Crap, I’ve got cancer This edition published to mark the first anniversary of Suvanna’s death, October 2014. First published 18 December 2013

© the estate of Suvanna Lisa Cullen

Cover and layout, Dhammarati Editing and typesetting, Vidyadevi

Incredulous Otters Press

We still can’t believe it iii Crap, I’ve Got Cancer Suvanna Lisa Cullen Suvanna cancer memoir definitely not depressing definitely The sad, somewhat funny, The sad, somewhat Crap, I’ve got cancer Crap, I’ve

iv Crap, I’ve Got Cancer v Crap, I’ve Got Cancer shines! everything from Petals by Rick Fields in the light of death in the light how Funny

vi Crap, I’ve Got Cancer vii Crap, I’ve Got Cancer x 3 1 7 xi xi 22 23 38 39 48 49 57 58 59 67 68 69 81 83 93 xiii Foreword, by John Wilson (Paramananda) Foreword, by John roller coaster Strapping into the Timeline of trouble the oncology department The albino tiger of Bodies really hurt! February What can I tell my bones? Opening the door March The human body at peace with itself The creative mind April The power of ideas Buddhism vs. the visceral responses Song May A kind of trust Song 2 (my animals) Expectations June An adventure in how things are Memoirs of observer and observed July The emotions of statistics The preciousness of life Thanks Contents Editorial note 2012 January

viii Crap, I’ve Got Cancer ix Crap, I’ve Got Cancer 95 95 173 175 184 107 109 123 125 138 139 146 147 162 163 163 February Hope and fear Separated Everything looks beautiful Cultivating the inner retreat These are not obstructions to enlightenment These are not obstructions Love Me and other people: September to face death The reason you have Embracing suffering October really know? What can we ever Ode to Jacques Cousteau November Heal thyself If you love animals December Die while you are alive Tolerance 2013 January 2012 August

ix Crap, I’ve got cancer x Contents 185 185 198 199 218 219 231 233 239 241 246 247 257 259 264 Constellations of kindness Constellations of kindness April Officially dying Hibernation May “dead soon” On being seen as Freedom on the inside June What is being me? Things as they are: fluidity and awareness July Ghosts in my throat The Matrix August The view from inside On conflict with friends September How much life? The Bodhisattva’s New Shoes House on fire 2013 March

x Crap, I’ve Got Cancer xi Crap, I’ve Got Cancer Suvanna loved poetry and often quoted on her blog the poems that her loved poetry and often quoted on Suvanna spoke to her on that day, so it seemed very important to include those those include important to seemed very it that day, so on her to spoke as far as I’ve I’ve written to all the copyright holders, poems in this book. been able to find out who they are, explaining the nature of this book poems. I haven’t heard back to quote the permission and asking their my thanks and appreciation in from all of them yet, but want to express advance of this private publication. Many thanks to Suvanna’s sisters, Laura, Kathy and Paulette, for their for Paulette, and Kathy Laura, sisters, Suvanna’s to thanks Many for giving getting this book printed, to Dhammarati generous help with for her this book, to Hridayashri care to designing so much time and and Padmatara to and photographs, the preparing and finding with help their support. Candradasa for all Thanks Thanks

xi Crap, I’ve got cancer She wanted to finish this book herself, and had very specific ideas were as they pretty much presented here are blog entries The terms to Buddhist names and Sanskrit smattering of a fair There’s about her approaching Suvarnaprabha never shied away from writing about how she wanted it to be, but in the end she had to leave it to her about how she wanted it to be, but friends to finish it for her. The book was to include some of her earlier today. An idea we had quite early on in your hands is her gift to you of months the between interspersed and poetry, both prose writings, and a gift for had a gift for saying things, She cancer blog entries. her to her in more lot had a clearly she them; and feeling them, meaning include as many as possible of her write, and we wanted this book to words. details have been cropped a bit, and a few Some of the medical written. many of want to stay, though seemed not to of the wilder digressions There’s a whole cast of characters the wildest kept sneaking back in. and family through their frequent – we get to know Suvanna’s friends appearances, and many doctors and nurses, both real and fictional, also to a rather than names, according feature (here they’re given initials considerate patient ...) cunning coding system devised by their past them as breeze just them, familiar with not you’re if – with contend name about her I asked her would advise. When Suvarnaprabha herself in an email, she said, “I’m Suvarnaprabha to Buddhists and Suvanna me Suvanna, Buddhists call some Buddhist company, though not in when but they’re not supposed to!” By the way, Suvarnaprabha is a Sanskrit Buddhist the Triratna ordained into she was when her to name (given Order in 2001) meaning “golden radiance”. one of the politer and more with the grim reaper, to use encounter but whatever process, that mysterious to referred she ways conventional In December 2012, Suvarnaprabha sent me an email: “I don’t know if “I don’t know email: me an sent 2012, Suvarnaprabha December In I you have heard but am cancer. I in fact dying of been writing have blog the like very much and would the last year, a blog for updates on it would be book. Many people told me they thought to be edited into a or moms or what- who don’t know me, as their sisters relevant to people (Or maybeever are reading it. me!)” And that’s they were just humoring herself found who one the Suvarnaprabha was began. book this how strapped she was as she put it, from the moment into the roller-coaster, myself as the of (“I like to think rare form of cancer diagnosed with a generosity she typical oncology department”) but with albino tiger of the took all of us with her for the ride, finding so many ways ofsaying the the (deeply) inexpressible. (horribly) unspeakable and expressing Editorial note Editorial

xii Crap, I’ve Got Cancer xiii Crap, I’ve Got Cancer Vidyadevi, November 2013 Vidyadevi, was going on and however she felt about it, through all the medical medical the all through it, about felt she however on and going was movie and journeys the Jackie, of Nurse and appearances appointments of sadness, the moments friends, good in delight her recommendations, drama stoicism, I’m of this story, as underlying theme and farce, the at all, but love. ‘cancer’, or ‘death’ agree, is not really sure you’ll

xiii Crap, I’ve got cancer A few months before she knew she was ill we were leading a month- A few months before she knew she For most of that time we both lived above the Buddhist center, she long retreat together in a field in Devon in the west of England. It was retreat, which we had planned to two years later, at the time of the same half of the people on that second do together again, that she died. About one I taught with Suvarnaprabha, retreat had also been on the earlier with some people who remembered and it was a comfort for me to be minds their in stuck what and memories, their of spoke People her. with delight to work between her and me. It was a the laughter all was Suvarnaprabha, who had become a very dear friend over the eight years in the nineties when I lived in her home town of San Francisco. on the top floor in a small women’s community, and I on the first floor in a small men’s community. We shared a deck and there was a great perhaps partly friends close became We all. us between contact of deal more but Buddhism as well as poetry of love a shared we because A few days after learning about Suvarnaprabha’s terminal diagnosis terminal diagnosis A few days after learning about Suvarnaprabha’s and found myself saying that it was with cancer, I was talking to a friend as a teacher. My friend said offer much to such a shame as she had so teaching. I don’t think I found those that maybe her death would be her they years two next the over but time, the at helpful particularly words how reflection, On prophetic. prove to were and often mind to back came embodied her Dharma could it have been otherwise? Suvarnaprabha she that imply to mean not do I way. deep unusually an in practice that she was more or less without was a ‘perfect’ Buddhist, but rather vulnerable, honest, profound and any front. She was in equal measure mind my through going little refrain a found I died When she neurotic. mouthed and big hearted’. She was which went ‘She was big boned, big an impression that stayed with you one of those rare people who made other are people ‘Most said once Wilde Oscar you. inspiring kept and people’. She was one of the rare exceptions. And did you get what life, even so? you wanted from this I did. want? And what did you to feel myself To call myself beloved, beloved on the earth. Late Fragment Late Fragment by Raymond Carver Foreword (Paramananda) Wilson by John

xiv Crap, I’ve Got Cancer xv Crap, I’ve Got Cancer We had many adventures together. I am sure she would not mind mind she would not together. I am sure adventures We had many this year. to have been able to visit her earlier I am very grateful writer she from a is foreword that heads this The ‘Late Fragment’ because we just naturally felt at ease with one another. Suvarnaprabha Suvarnaprabha another. one with at ease felt naturally just we because the and on to earth and down tough She was woman. a complex was was – she us both hand with the other always there was hand – other tired beautiful. I never vulnerable and smart and sensitive, incredibly and kindness. brimming with life as she was of her company a part Francisco, played with San that LSD, so associated me saying a in night at together swimming remember also I them. of some in sporting with dolphins Mexican bay sea in a moonlit phosphorescent to me now. many other memories come back close by. These and she was much enough to go out, and in many ways She was still well a new gravity to had changed was that there was her old self. What more fully in the of weight and care, of being her. A stronger sense very striking, the with those around her. It was world, more intimate her. She gave and in a sense also sprang from her love that surrounded towards herself her vulnerability, her sense of care courage through in building a a pivotal part over two decades and others. She played around the San close Sangha, or community, vibrant and exceptionally allowed people Center. She was loved because she Francisco Buddhist her sleeve and it was a big and open to know her, she wore her heart on gives a sense of what I am trying heart. Her blog, now published here, all the medical appointments to say. Her personality shines through and treatments. to me to express the teaching that introduced me to, and his words seem offers to you all. she gave all her many friends and now

xv Crap, I’ve got cancer 1 Crap, I’ve Got Cancer Strapping into the Roller Coaster Roller the into Strapping Buddhist practice is super helpful at times like these, and at many many at and these, like times at helpful super is practice Buddhist less diagnosis, my since life my of play-by-play a is follows what So strapped into that very partic- Anyhoodle. If you have already been Suvanna Lisa Cullen Suvanna Lisa Cullen Mexico D.F. November 2012 others. However I want to let you know that I am not going to be not going to be I want to let you know that I am others. However practice in this book. Thankfully explaining Buddhism or Buddhist do that. (Please consider buying there are thousands of other books that about heard US and in the are especially if you books, those one of Buddhism from your church!) part philosophy, and part medical than two years ago: part humor, created for friends and family who update. It is derived from a blog I others. On it, I wrote, drew, photo- have encouraged me to share it with graphed, reported, and reflected upon lens I am using to see, conjured by and outside. It chronicles the new what was happening,inside suffering and reflection upon death. All of whichsounds rather heavy, From another, it is just some- and it is from a certain point of view. something most of us are actively thing that happens to everyone and to trying currently am I something is It lives. our of most for ignoring embrace, though sometimes my arms fly up into the air, as they would on any roller coaster ride. is wish my – not have you if and – cancer is that coaster roller ular and help you to understand more that this book will both entertain you miracle that is your life. deeply and appreciate more fully the A vegetarian and a Buddhist meditator for over 20 years, I have enjoyed enjoyed years, I have for over 20 meditator and a Buddhist vegetarian A the last couple not enjoyed it nearly enough!) until good health (though fatigued, started around 47, I became increasingly of years. When I was dealing not every three weeks, and found myself having my period Then after too often, with devastating depression. very often, but way no to happen to tend that things just (really symptoms of increase an Stage 4b vaginal my age) I was diagnosed with small number of women formal introduction to the Grim Reaper. adenocarcinoma. A Introduction: Introduction:

Timeline of Trouble

May 6 2011 December 6 Normal annual gyn. exam. I thought they did not have a Perimenopause ongoingly real diagnosis and started seeing problematic, but not unusual an acupuncturist, who asked (frequent periods, fatigue, for medical records. Poking depression). My nurse prac- around online in my records at titioner suggested fluoxotine around midnight, I looked under for mood stabilization and “Ongoing conditions” and found helping with other symptoms of out I have cancer! Diagnosis perimenopause. dated November 21. I alternated between shock and denial. Was 3 Timleline of Trouble October 3 it a clerical error? Was the doctor Period starts, and doesn’t stop. insane? If it were true wouldn’t Experiencing a lot of fatigue. he have told me? I didn’t really believe it until I called the doctor November 4 the next day. Looking back on Same day appointment at my it, it was all rather obvious, but health plan with a new (avail- since I figured I’d be the last able) doctor. Many subsequent person on earth to get cancer, I appointments – which included a really needed to hear that word vaginal biopsy, a uterine biopsy, in order to understand. He said an ultrasound, and a CT scan. he didn’t want to alarm me. Yet The doctor didn’t tell me that I being alarmed is … appropriate! have cancer, or at least he didn’t Since I’m not naming names here, use that word. So I did not get it. I’ll just go ahead and say that his communication skills were appalling! December 21 to a two- Went with Padmatara class. Very hour chemotherapy from Dr R, helpful. Got this note cytology report the urologist, “The in the urine does show tumor cells talk to Dr as expected. You should the PET-CT K about this and about are available.” when those results December 22 Notes from conversation with Dr N (backup while Dr K is on vaca- tion): The tumor cells in the urine mean just that the cells are around, not that the cancer has traveled to the bladder. PET scan doesn’t show another origin; this test is not very specific – did light up pelvic bone near tumor – could just be mass itself. Should get x-rays just in case. (CAT scan didn’t show anything in bones.) Chemo usually starts 1-2 weeks after initial consult. Yes, usually gets worse/ more tired cumulatively. Is the tumor growing fast? She said if there was no sign of it in May and it’s 5cm now, that’s pretty fast!

December 20 PET scan (Positron Emission Tomography) in Santa Clara. They shoot you up with radioactive sugar (a quote from the nurse who explained it to me), leave you lying down in a dark room for about an hour, then spend about 20 minutes in a CT-scan-like machine which is a lot more sensitive. It finds areas of sugar = intense metabolic activity. December 16 December 19 Cystoscopy (‘cyst’, at least in this case, means bladder) with excellent urologist Dr R. Procedure some- times causes infection so was given antibiotics. After taking first one, broke out in super itchy hives. Note to self: allergic to sulfa drugs. Upcoming appointments: pelvic x-ray on my way home from Lake County, at Geary. Solitary retreat Dec 22-27 – yay! Meet with lovely gynaecological Meet with lovely gynaecological referred to oncologist, poetically K. “Tell me as a “GynOnc”, Dr approach. Pals everything” was my came with Julie and Padmatara appoint- me to this and subsequent various tests ments. Dr K ordered vaginal tumor is to ensure that the If it is, and no the primary cancer. it is “Stage other cancer is found, 2”.

4 Crap, I’ve got cancer 5 Timleline of Trouble

Will likely be 28 treatments of of Will likely be 28 treatments Effects of radiation take 2-3 He said, “bad luck”. He pointed out He pointed out He said, “bad luck”. my condition how extremely rare in my family is, and that nothing point to this history would ever happening. In general I am doing and am not in fairly well mentally, greatly helped physical pain … was up in Lake by a solitary retreat wonderful. County which was external radiation (each session (each session external radiation is short, 10 or 20 minutes). Next step is to get another CT scan so they can put little dot tattoos on me to start mapping out where the radiation is going to go. At first they were saying chemo is done to enhance the effect of the radiation. That is no longer the case – chemo is primary since the chance of cancer cells being elsewhere in the body is very high. There might be more chemo and/or internal radia- tion treatment after the end of the external radiation. weeks to kick in, and last 2-3 weeks after radiation stops. Possible short term side effects of radiation – UTI infection, diarrhoea, stinging urination, skin reactions (burning). Longer term: 15% chance of urethra blockage – can be corrected. Bladder repairs itself. Mild edema 20% chance. Radiation itself can cause new tumors. In addition, I will go through menopause within 6 months after treatment.

We were there for a couple of We were there for a couple of December 30 a lot of time Julie and I spent quite Dr O in with radiation oncologist He let us South San Francisco. scan and pelvic know that the PET cancer in my x-ray I got showed to the tumor. pelvic bone – next which appar- He called it sclerosis, It was also ently means scarring. When cancer in one lymph node. staging changes is in the bone, the to Stage 4. They have found ‘no distant disease’, which is the usual case with Stage 4 cancers. The way the oncologist put it was that they can’t cure cancer in the bone, so they start thinking in terms of ‘control’ rather than cure. It’s not possible to give enough radiation to bone, so they try to take away pain and protect the bone. He did say that my general health is very good and that is a very positive factor, and that there were no fractures or holes in the bone (the worst case scenario). The penetration into the bone seems to be minor. He said the cancer was probably there when I had my last exam in May, but was not big enough to feel in a pelvic exam – and pap smears test for cervical cancer only. hours, and I did get a chance to hours, and I did get a chance to ask the oncologist – even though I knew he probably wouldn’t have an answer – why this has happened.

January 2012 The albino tiger of the oncology department Jan 18: Room not really as divey as it appears here. Photo, Padmatara 9 The albino tiger of the oncology department The nurse nurse The on my bike bike my on

In any case. Today. The point today was to find out about internal I’ve asked the oncologists about my chances of being alive in five and meeting with an oncolo- This is what happens after every exam radiation which is going to be part of my treatment, in addition to in addition to going to be part of my treatment, radiation which is I had been told that internal external radiation and chemotherapy. there are two kinds, and I’m not radiation is very simple. Turns out the kind that is injected with getting the simple kind. I’m getting for. Why? Because my tumor needles, that you need spinal anesthesia in the pelvic bone near is big, it is deep. Because there is cancer not only got I why be must (which joint hip left my in but tumor, the January 3: 2nd radiation oncologist January 3: 2nd radiation with Dr L, drove to Santa Clara for an appointment Today Julie and I intra-operative world pioneers in brachytherapy and who is “one of the excellent getting am I that felt have consistently I therapy”. radiation view this meeting plan, but from a subjective point of care at my health with discoveries about my I thought I was done was pretty depressing. with more meeting tomorrow have one not. I but apparently condition, see what happens there the chemo guy … January 4, Medical oncologist/chemo Didn’t get any more bad news today, or none that I’m going to tell you – ha ha! Dr S did say that my condition is so rare that there is no good years. They say it depends on how the tumor shrinks, which they tumor shrinks, which they the years. They say it depends on how there are major cannot predict. Aside from issues of survival, for me, body my will of functionality level What life. of quality with do to issues The doctor told me that there have at the end of all these toxic blasts? of the tumor will leave a hole, is a ‘reasonable likelihood’ that removal both. or bladder, the vagina, the of wall the in fistula, a called me give they – scans and tests the all besides fourth my was this – gist fricking you Are think, I news. depressing super be to appears what strangely, Then, again. nightmare, total a like sounds It me? kidding I get used to whatever they said. As Shantideva says, If you can solve your problem, then why worry? If you cannot solve it, then why worry? this philosophy, I have philosophy. To practice That is pretty much my to live in the present, because I can’t know what the future holds. yesterday, went OUCH, and got off. It hurt my bones.) yesterday, went OUCH, and got off. to tissue healthy of ability the impairs radiation that said practitioner cause more problems repair itself. At that point, surgery is risky, can many months to let the healthy than it solves. So you have to wait then see what is possible. tissue return to closer to normal and My life now is deeply and intuitively precious to me. My life now is deeply I need to. I think I will be able to let it go when At the same time, more wholly in the present. I am able to live much and other people’s lives, as precious. I experience my life, in my life love being expressed by everyone There is a lot more (including me). to people. I feel very connected that I email, who asked me if I felt supported, I told a friend in an felt surrounded by love. money, without which I could My family has been generous with not take care of myself properly. simple. There’s just taking In a way, everything has become really care of stuff, and love. than feeling depleted/tired, Physically, I don’t feel so bad other (if not years). which I have been for many months - I will be getting cisplat with me today. and Julie came Karunadevi January 7: Chinese medicine night I went days, I do not feel tired! Last Wow, for the last, say four January 5: CT scan with tattoos tempera- a essentially is scanner CT A yesterday. scans CT two had I you of it, and around inside has a camera whirling mental donut that center, the into wheeled and table a on placed carefully very very, get the details of the procedure here as if you were the jam. Writing about would be rather too intimate even for me. Suffice it to say that I have even a tiny little dot tattoo, three dot tattoos now. Getting a tattoo, it would be. They are on either was way more painful than I thought help with navigation of radiation hip and below my belly button, to incred- so was radiation the with helped who today RN The beams. any getting be won’t I sorry I’m her. loved I gentle, and thoughtful ibly more CT scans, at least not for a while. I also got a lot of info about side effects of radiation. It’s finally sinking in that I’m going to lose my hair … I ordered some stuff today recommended by nurses and docs – special soap, shampoo and other things. I write these things not because I’m trying to be positive, but because thisI write these things not because I’m trying been very long – about a month. has been my experience, so far. It hasn’t Benefits of Cancer However, not. am I and optimistic, ridiculously be to want wouldn’t One things since my diagnosis: I have noticed a few data for treatment, survival rates, or … anything. As my sister Kathy Kathy sister my As anything. … or rates, survival treatment, for data the myself as think of I like to special! been I’ve always yesterday, said department. the oncology tiger of albino to is function primary its that meaning sensitizer’, ‘radio a inum, about He is not concerned of the radiation. the effectiveness enhance there is in making sure advised caution acupuncture – just herbs or blood thinning. the herbs that causes nothing in

10 Crap, I’ve got cancer 11 The albino tiger of the oncology department I have a lot of respect respect of lot a have I Yesterday I felt so energetic (relatively speaking) that I walked that I walked (relatively speaking) I felt so energetic Yesterday seeing started I (acupuncturist Winnie visit to there down went I She was very kind, and she knows a lot lot We talked for about an hour. She was very kind, and she knows a I haven’t been doing, mostly Her advice was to meditate (which to sleep at around 10, and woke up naturally at about 6:30. Must be be Must 6:30. about at naturally up woke and 10, around at sleep to the depletion/ off getting Also probably diet? my of changing because good It’s also it is fantastic. case, In any merry-go-round. caffeine before I my life a bit clean up some things I need energy to because start chemotherapy. on a strange experience and a half). Had (about a mile downtown and around, looked I point one At St). 9th (around Street Market sunny Sure, it was a nice, and happy. seemed really friendly everyone day. But it was the first time I can ever recollect feeling this way, that I should have by random people who were very kind. I was surrounded my eyes again … were still there when I opened blinked to see if they about cancer, and diagnosis), who lent me some books before I knew my is well known consultation with Misha Cohen. She then had my initial there for two or tough cases for many years. I was for working with to me wonderful. It feels deeply nourishing/healing three hours. It was not. does plan health my to going that way a in Meditation I meditated twice in the Buddhist Center this morning. First time I’ve been in there in about a month, which probably has not happened since I moved into the building in 1994. I don’t think I have meditated formally – maybe once – for a couple of weeks, which has also got to be some kind of record. I was nervous about making an appearance and it and there, people six around only were there but overwhelmed, being cushions and my fantastic. Started setting up it was in silence, so was about chemotherapy and radiation, even about my specific chemo drug. drug. chemo specific my about even radiation, and chemotherapy about intense. It’s hard to explain. I felt Then I had a treatment, which was also is it somehow body; my in around moving energy intense of lot a my in blockage of kind some about me asked She meditative. extremely yes, I have worked with blocked chest that she felt in my pulse. I said in a point near my lower shin heart energy quite a lot. She put a needle I felt it very strongly in my left hip bone, which was rather painful, but (where there is cancer) … painful sit bones). Re nutrition, because of extremely low energy and which I ordered last night. She she suggested I get Life Over Cancer, suggested fish (according to recommendations she said chicken causes some kind whey protein, organic eggs. I think on seafoodwatch.org), sprouts front, she said Chinese of congestion. On the alkaline/endless cooking all foods, though sanita- medicine recommends at least lightly tion might have been a big influence (it’s true – vegetables). But I often cook the cultures [outside California!] eat raw seems like very few like certainly I but food raw of tons eat can I like feel don’t I too. sprouts etc. having some – carrots and turnips for Chinese medicine and in the past it has been helpful, especially on especially on and in the past it has been helpful, for Chinese medicine doctors can’t help with. things that Western I feel intuitively that the mildly painful - sensa Please do not take what I write here too literally. Please do not take what I write here I mentioned that the lingo First we chatted in his living room. (I don’t know what he calls Then we went into his healing room I was saying to Julie yesterday as we were walking in Edgewood in Edgewood yesterday as we were walking I was saying to Julie around cancer is ‘fighting for your life’. I said I did not want to fight for my fight to want not do I and body my of part is cancer the that life, my He is. that of opposite the what out finding on working am I That body. agreed very much with this. to the shrine my intention for it). First thing he did was ask me to say level, some on that realize I did first. at easy so this find didn’t I healing. something like that I wanted to I do not expect to live that long. I said lying was I Then life. my of aspects all appreciate to able be to and heal I on a cot, and he did a little chanting and … again, hard to describe. had all sorts of images going through my head, but they were so quick I can’t remember them. My lower abdomen started to hurt, and my left - hip was throbbing. The pain was mild, it was more like intense aware ness of those areas, down to my toes. At some point he led me through a visualization, using the breath to go into the center of the pain and filling it with love and light. I spontaneously imagined a fire, and the January 9: Shaman does he what describes he website his On shaman. a is Alan friend My with engage to reality of states non-ordinary entering of practice “a as to develop relationships, solve the spirit helpers and the natural world balance”. Alan has also been a problems, perform healings and enhance 20 years. volunteer at SF Zen Hospice for almost January 8: Thanks for all your kindnesses January 8: Thanks my step-mom California) sent me a big check, My dad (in Southern daughters are car and paying for parking, and her is giving me her And me. to relief huge a such are things These insurance. the covering that people have come my way. I feel so grateful many other kindnesses do they course of think, might You live. to me want and me about care gratitude. … but … one feels I had cancer? I am happier than I was before I knew Park, is it true that (and more sadness I suppose there is more happiness How can that be? she took of me I wanted to post on the blog a picture and terror as well). Dead sweatshirt around my from the back … I’m wearing a Grateful to look at a plant, and it says DEAD waist, crouching over with a docent to give it to me, but we laughed across my butt. Julie is too sensible about it for a long time. tions I get in my left knee, and my right hip are cancer that is not is not hip are cancer that and my right in my left knee, tions I get It hip does, only subtler. same way my left yet. They feel the detectable was very interesting figuring out how to relate to this during medita- be. it letting just and pain, the about fear the but pain the only Not tion. this process. I deeply love then remembered that I can’t sit on cushions, so I got a chair – enjoyed enjoyed – chair got a so I on cushions, sit can’t I that remembered then sit Second the end. toward my joints to hurt it started but meditation I was lying on the floor.

12 Crap, I’ve got cancer 13 The albino tiger of the oncology department drinking diluted diluted drinking I have no idea why I got cancer. Five oncologists oncologists Five cancer. got I why idea no have I Afterwards he said the ceremony lasted about two hours, which I I which two hours, about lasted ceremony said the he Afterwards I am by and I was telling him how impressed We talked about death – you got cancer – seems to think that they know why 1. When someone of type the it’s sure They’re did. you something of because definitely it’s thoughts you had. Which isn’t food you tended to eat, or some poisonous the resisting am (I factor. a been have couldn’t things these that say to other also are there But not.) were they me for that show to temptation – and no doubt others we know possibilities – genetic, environmental peri- by caused body my imbalances in that theory is working My of. not factor. a were – blood of lot a losing depression, depletion, – menopause day, the of end the At tell you (or write books that say) 2. People who want to help you so they stage cancer - by drinking vege- that you can cure your own advanced or vegan, being singing, turmeric, eating juices, table So these are the things that are difficult. Also, it can be very very feel I that is fact The crying. and upset are friends when me for painful strongly that I have to be prepared to die. In a way this is what keeps me from being depressed every day. However, I don’t mean to suggest that that is some kind of precognition, or that other outcomes are not Free. Them Set Someone, Love You If song, Sting the of Think possible. But the someone is your life. January 10: Non-benefits of having cancer January 10: Non-benefits Here are two things that, at the moment, don’t appear to be benefits of people! you can see, they’re both about other having cancer. As have to be my fault? don’t know why I got cancer. Does it but not much.) Alternatively, hydrogen peroxide. (I’m exaggerating, etc., which is what will really that you should forgo chemotherapy foods, same Those patients. cancer for bad are foods Certain you. kill patients. It has been confusing. claims someone else, are good for cancer Chinese medicine according to However I have mostly chosen my path: recommendations from oncologist Misha Cohen, diet and other lifestyle health my alkaline), and that are more leaning toward foods (plus A Dr plan for chemotherapy and radiation. smoke rising from it. It was wonderful. The sensations changed into into changed sensations The wonderful. was It it. from rising smoke blissful. and spacious something is for of this disease part of the purpose He said found astonishing. was kind also said there handle death. He people how to me to show very vocal in expressing that I need to be in my throat, of a blockage but sure what that meant I wasn’t quite during this time. my needs an owl, with He said he communicated will emerge later. perhaps that me. or guardians around there are protectors and that to helping people his vocation, and his commitment him having found he would be we were both crying. He said heal. By the end of the session journey. It was incredibly comforting. there for me on my I can’t believe believe I can’t This reminded me that a couple of months ago I went to went I ago months of couple that a me reminded This A nutritionist spoke for a bit. Looked at the booklet Eating A nutritionist spoke for a bit. Looked Hints: So this is maybe related to “sugar feeds cancer”. I would add, Feeding would add, Feeding I “sugar feeds cancer”. maybe related to is this So a her give will I – stuff interesting some us told worker social A Before, During and After Cancer . Some of it was to do with Treatment for example, … but treatment, effects of side managing “Sugar Feeds Cancer” They consume “Tumors are gluttons for glucose. Quote from Dr A: this blood sugar at a rate tissues.” of ten to fifty times higher than normal Radiation 101 I went to a “Radiation 101” class Padmatara, Julie, Pasadini, Dawn and and huge machine made today. We saw the unbelievably sophisticated radiation; then there was a slide by a local company which delivers about their areas, including a show with several different people talking guy who “designs a treatment Medical Dosimetrist, a behind the scenes computation to determine a plan by means of computer and/or manual dose radiation prescribed the deliver will that technique field treatment dose-limiting structures”. while taking into consideration the January 11: MRI 11: January it inside and while is a tube, the MRI scan), a donut (CT than Rather - claustro you’re if beforehand ask they why understood immediately I pitches. sounds in varying of rapid banging there are a lot phobic. And me out, an hour they took After around half me earplugs.) (They gave about for in back me put then kind, some of dye a with up me shot too I was wearing hot inside that machine, It was kind of 15 minutes. lost Then I got slightly relaxed by the end. but I felt very many layers, corridor. sign gracing every bright red EXIT get out of there, a trying to the down stairs, the stairs but I could see that after Even tried to take me how to get out back up again. A kind man told they just went right ah, outside. of there – and eventually, and (a lovely place and very affordable) Works Community Acupuncture She craving. sugar intense having that I was Ninah I remember telling to this degree. this before. I said I didn’t think I had asked if I had had Of course this is probably true a sugar craving feeds the sugar craving. it, it may come back stronger. I of any kind of craving. If you indulge and now, sugar added with anything eat to desire no virtually have know that sugar is bad for me, but less craving for fruit. Not because I I’m interest. lost I two, or day a for it eating stopped I after because it’s not a struggle. really grateful for this actually, that call at some point to find out about classes for people with cancer and support groups. Would also like to go to the “Look Good … .Feel Better” how you tell They Society. Cancer American the by there offered class to draw eyebrows and other cosmetic stuff. It had only vaguely occurred to me that I won’t have any eyebrows, which almost seems worse than I’m much much to drink fruit punch! I’m they tell people losing their appetite more confident getting nutritional advice from the acupuncturist, who says to eat omega 3s, all organic food, very different.

14 Crap, I’ve got cancer 15 The albino tiger of the oncology department Last night I felt some pain in my pelvic bone and hip joints. I’m pelvic bone and hip joints. I’m Last night I felt some pain in my Bombarded with doom-and-gloom statistics, you may feel over- statistics, you may Bombarded with doom-and-gloom muster enthusiasm for life. So forget all the whelmed trying to to you. They do not apply All statistics, by talk of ‘survival rates’. Researchers use only to groups, not individuals. definition, apply works or not, and physi- them to determine whether a therapy different therapies. cians use them to help make choices among should not use statistics to But as an empowered individual, you dictate your chances of survival. I don’t really have any statistics to deal with, yet I find this very wondering whether my days of not having any pain are over! It might wondering whether my days of not having any pain are over! It might be from sitting in the car for hours, and in fact the last time I felt it was out worked haven’t I Also drive. long a after also County, Lake in up the challenge of how to sit in meditation. I was realizing today that it’s probably more painful because of what I think. It’s not just a sensation, it’s the thought of cancer. I’m pretty sure this thought makes the pain seem worse. So this is my next (mental) project, to try not to add to treatment once that say doctors The mind. my with pain physical the starts, it will help with the pain … January 14: A walk at Spooner Lake for a hike with Mike and Dawn It is lovely to be up here in Tahoe. Went were shore near the aspens the sun the bright In Lake. Spooner around of surface the to close flying eagle bald a saw We beautiful. particularly by us, amazing to see. the water. Eventually it flew right January 13: Optimism or pessimism? January 13: Optimism A, Dr oncologist the by written reading, been I’ve what of some is Here many, many people with cancer: who has worked with going you’re know you that mean doesn’t It encouraging. and sensible you’re going to die – it means to live, it doesn’t mean that you know you don’t know what will happen. And how incredibly difficult it is, to nor pessimistic, when there deeply not know, to be neither optimistic you do know is that you cannot is no objective cause for either. What control the outcome, and that what you do will have Anything can happen. some influence. January 12: A different diagnosis 12: A different January Here is my diagnosis from Misha Cohen’s office: Yin and Blood (Xue) Deficiency, Spleen and Kidney Jiao, Upper in Qi of lack with deficiency too bad, Doesn’t sound Mai Imbalance. Toxic Heat, Chong Heart Fire, Anyway I would say. than Stage IV cancer, sounds better does it? Well, during to see me 2x/week and they want plan is 5 pages, the treatment to want I which recommendations nutritional of lot a are There chemo. follow … losing the hair on my head … It was nice to be there with friends. It did did It friends. with there be to nice It was … head my on hair the losing it less scary. make possibly a

landed in We cedars. red western gnarly and Felt very loving toward the people on the BART train again, espe- again, train BART the on people the toward loving very Felt have given me money, which is I have received many gifts. People I tried to get a short haircut today, but the stylist had called in sick. but the stylist had called in sick. I tried to get a short haircut today, Disability, and getting a Handi- I signed some papers about State We had an excellent dinner and everybody went to bed. Time for bed. Time for dinner and everybody went to We had an excellent January 18: The movies I picked were crap (Chemotherapy) I felt nothing unusual when I was getting it injected into my hand. It took about three hours – an hour of hydration (water with sodium and January 15: Whale Beach Whale 15: January down Nevada, Tahoe in of Lake east side from the today, walk Wonderful towering path of wide a accent of some kind who asked me cially the man with the very strong way a in it pronounced (but Embarcadero to goes platform train which son. his with was He train. which then and understand), barely could I I felt very protective of them. emails, loving car, a books, mention to not relief, enormous an such company, nutritional socks, sustainably farmed tuna, groovy cans of vibes, and salads at Fresh Choice. And good solidarity, books, rides, there is the gift that I maybe understand a tiny bit more about the Buddha’s teachings on impermanence … The other one I tried was on vacation. Will try again at Grasshopper in Will try again at Grasshopper in The other one I tried was on vacation. doesn’t work, screw it – I’ll just wait South Park, 3pm Thursday. If that for it to fall out! borrow it!) Still need to get my car capped parking placard (no, you can’t parking other some out sort and permit, parking area an get registered, for the next while. Also I’m almost done changing the beneficiaries on security social people’s need I because while a taken has which IRA my Health Care Directive. So much numbers. Am also doing an Advance my living space a bit. I was told yet paperwork! Also trying to de-clutter kick in for about two weeks. I hope again today that side effects won’t done. it’s true so I can get some more stuff January 16: Lying on tables and other gifts January 16: Lying and one for a today. One at the acupuncturist’s, I’ve lain on two tables shoulder around to up jacked being involved which simulation, radiation gizmos other and arms mechanical crazy these all watching and height, 20 minutes. circling around my pelvis for around me to do that too. Sorry for the abject lack of philosophical content. I’m I’m content. philosophical of lack abject the for Sorry too. that do to me might be for the at the moment about how my life feeling depressed that so much. But I don’t want to write about next … however long. beautiful little cove called Whale Beach. There was no one else there. was no one else Whale Beach. There little cove called beautiful the wind the end of the afternoon or two. Toward for an hour We stayed in the and spraying waves were crashing up and the started picking are my every day. Pillows ache a little more sit bones seem to My sun. seem to do … it doesn’t favorite things to is one of my Walking friends. eleva- walk, but it is a high It was not a long pain either way. affect the and a lot of cold feet I think), and it was a lot of sun, tion (6,000 or 7,000 back. completely knackered when we got wind. We were all

16 Crap, I’ve got cancer 17 The albino tiger of the oncology department A few people have told me that it was upsetting to read that I am was upsetting to read that I am A few people have told me that it My life has become more unified. I realize how often in the pastI Had a wonderful acupuncture treatment last night. Beforehand my last night. Beforehand my Had a wonderful acupuncture treatment haircut if I didn’t have cancer Saying that I wouldn’t have gotten the Appointment tomorrow @ 2pm for the ever elusive haircut. Was Was elusive haircut. 2pm for the ever tomorrow @ Appointment shit done! treatment has started. Let’s get this I’m very glad the thinking about being ready to die. It is understandable. Being ready It is understandable. Being ready thinking about being ready to die. for prepared being because thing, positive extremely an also is die to be only can’t You live. to ready being as same the essentially is death ready for one thing, they are too much inside of each other. have felt subtle guilt about what I am doing (or not doing), or subtle anxiety (often about money, about the future). I have spent so much time planning, planning tomorrow, planning next year. Now, I can’t I nothing. Really: away. weeks two than think about anything more How Can Cancer At Least Occasionally Seem Like Such a Positive Thing? How Can Cancer At Least Occasionally meditation, tuning into the tender- I wrote a while back about sitting in of this now, not only of my own ness in my heart. I am acutely aware by it. Like my need to defend or tenderness, but of being surrounded down. protect myself has somehow broken lower gut felt like it was tied in a knot and I was having little waves of of waves little having was I and knot a in tied was it like felt gut lower standing up. The other times I’ve something like motion sickness from needles very intensely. This time, gotten acupuncture there I felt the abdomen. She said she was going all I felt was a slight pain in my lower the chemotherapy drug. It felt to work on the nausea, and circulating a deep, completely absorbed and like that’s what it was doing! I fell into that grateful so am I treatment. the of part first the during sleep restful I am able to do this. love it! And I’m a dyke magnet now might have implied I don’t like it. I though I’m a celibate heterosexual which I might as well enjoy (even must be said.) with a very messed up vagina!!) (It January 20: Another day January 20: Another the rain to the San Mateo then PT and I drove in Day 3 of radiation, car, my registered and placard, handicapped temporary a got I DMV. her husband are tomorrow. My sister Laura and which I am getting Because the Fresno and taking the train back. driving it over from meaning its main is primarily a ‘radio enhancer’, chemo I am getting getting a lower the effects of the radiation, I am purpose is to enhance Thanks to that, would who is just getting chemo. dosage than someone days or so. supposed to start for another ten the real trouble isn’t magnesium), an hour of cisplatin, and another hour of hydration. I also I also of hydration. hour another and cisplatin, of hour an magnesium), feel slightly bed now, In this morning. radiation during felt nothing side the main It’s for that. have meds get up – I whenever nauseated hours. I’m still going for a couple of nausea after I rested effect. No more see. The days, so we’ll anti things for three two different to be taking would radiation that the today me told O Dr oncologist radiation sweet pain in my sit bones. and decrease the stop the bleeding very likely if I can face a pixie. do. Don’t know a Michelle Williams pondering She said she she said She A couple of friends have suggested I get a second opinion about my my opinion about of friends have suggested I get a second couple A Today and yesterday, my guts are in painful turmoil and I am very painful turmoil and I am very Today and yesterday, my guts are in I do not feel that I am practicing, or trying to do, anything, but but anything, do, to trying or practicing, am I that feel not do I what it was? … well, could my life ever return to If my life returns If you are divided from your body, you are divided from the body are divided from the body If you are divided from your body, you other than you, or separate of the world, which then appears to be in which you belong. from you, rather than the living continuum Phillip Shepherd A Buddhist here who is a doctor has put me in touch with a treatment. A Buddhist here who is a doctor has put me in touch with a was working on ‘stabilization’ and releasing dead cells from the body. releasing dead cells from the body. was working on ‘stabilization’ and not does which time of amount indeterminate some for there lie I And and stimulates certain points with seem long. Then someone comes in it’s a burning ember and it smells a burning cigarette (not really, but was I there lying was I When moxa. called It’s fantastic. feels It good). very feel I time only the sick, feel not do I time only the is this thinking, deeply well. In fact the only time I can feel energy moving through my body, and at the same time I feel deeply calm, is when I am there. It’s the only time I can fully relax. I feel a lot of confidence in my western doctors, but I feel that what they are covering is a narrow band of my life. Going to Misha fills in everything else. Last night I saw Misha. She mentioned working with the FDA and doing working with the FDA and doing Last night I saw Misha. She mentioned to do with HPV and cancer. Then trials of herbal lotions – something maybe 20, mostly in my head, she put in the needles, I don’t know, legs. lower or feet my in couple a and abdomen, lower

tired. Has it really only been four days of treatment? tired. Has it really only been four days January 23: Life/A giraffe is very large January 23: Life/A to one in a forest. big a giraffe is, until I stood next I thought I knew how stand underneath to the top of his leg. You could My head did not reach wouldn’t feel if you felt like it, but you probably his stomach, I mean, Then walks. that house furry big a at up looking like It’s 5’9”. I’m it. like the giraffe isn’t there anymore, because five years we are small. We are a dot. We that was in another country. But still: have passed, and of anything, even our own body, can barely stand up beside the stature which is in some way king of it all. do not think about the future. It is too clear that there is nothing I can I can is nothing there that clear is too It future. the about think not do right now. about it know have not could I ways in simplified or away dropped have things certain I’ve been I feel that what complex. I feel less psychologically anticipated. practicing (or something) has flowered … into a caring and connected the street For example, on around me. friends and strangers feeling for crazed an at least slightly or chatting with petting a dog, I spend ages seems with, filled is world the that life the world, The person. homeless I am loved. I have ever known so deeply that magic. I don’t think other am able to expend some energy in Doubtful. But if someday I hope some part of to the other side of cancer, I ways, through somehow carry on. have made my life so sweet, will these threads, which

18 Crap, I’ve got cancer 19 The albino tiger of the oncology department

Presumably the title works for the woman who made the film, During chemo Julie and I watched the first episode of The Flying can have totally different Individual cancers, just like people, as you might imagine, vaginal Speaking of cancers being different, I filled out anAdvance Healthcare Directive yesterday with Dawn Nun, which will only register with Americans over a certain age. It’s Americans over a certain age. It’s Nun, which will only register with old) in San Juan, Puerto Rico, about a nun (Sally Field about 2 years And flies. frame, small very and headgear wing-ish her of because who, reminds me of my friend Kitty. We Ricardo Montalban and a nun who - also watched the documentary Crazy, Sexy Cancer. I liked it – inter people how too realize me Made journey. else’s someone watch to esting same the of kind all is cancer that – thought I ago month a and – think her liver and lungs that, eventu- deal. But this lady had 14 tumors on sitting there not doing anything. ally (spoiler alert as they say) were just cured – nothing to do but check Which is as close as she can get to being on it once a year. rates, respond to different personalities! Grow at drastically different is what sign, good a is what – for look doctors what Even treatments. – seems to depend on what body a bad sign, what is a perplexing sign that body part. For example, an part/s and what kind of cell within How is. tumor my big how with concerned not was he said oncologist deeply it has penetrated into the tissue is what is significant. I’m not have to see how it responds to sure what mine’s personality is. We’ll of treatment. what Dr A called the ‘attack phase’ cancer cannot be called sexy. Not that I’ve ever seen it what it looks virtually no vaginal pain trippy), and I’ve had be like (that would … but still, sexy? My movie would be called The Crazy Antichrist of Sexy. My married. getting up ends and NYC in actress successful a is who sex is what has cancer, so that’s very different, it probably goes without saying. Anyway. January 26: A nun flies through the chemotherapy room flies through the chemotherapy January 26: A nun oncologist, Dr O, radiation, and a chat with my main Yesterday: First, going well, which and Julie. He said the treatment is with Karunadevi (There are no means that nothing has going wrong! as far as I can tell to gut turmoil this treatment phase.) In response diagnostic tests during he suggested increasing fiber, and avoiding eating raw fruits and veg. intolerant during a possibility I will become lactose He also said there’s agreed that was a suggested probiotics, and he treatment. Karunadevi this kind how my doctors never seem to volunteer good idea. (It’s funny of info first!) and a talkative bald cancer patient as witnesses. You know, don’t keep keep You know, don’t patient as witnesses. bald cancer and a talkative drunk everyone to get I’m dead I want as a vegetable; when me alive etc. Spirit in the Sky, and sing - proac being not quite of edge the felt on I have C. Dr UCSF, at specialist But I I have. the appointments to all far, to add go this enough to tive forwarded. records in to get all my paperwork I got it. Today am doing get the records. when they call me for an appointment They will flown flown for $4.99, It’s interesting: what one thinks one is owed, or deserves, or maybe is owed, or deserves, or maybe It’s interesting: what one thinks one When I am at the acupuncturist, I visualize white light filling my We talked a bit about working with positive affirmations. I had had This week after chemo I felt In general, I’m doing very well so far. just what one is unwilling to give up, given a choice. You might say, up, given a choice. You might say, just what one is unwilling to give not have a few Chilean blueberries? well, she has stage IV cancer, why I feel that the sense of entitlement I don’t mean to labor the point, but – or perhaps it’s just an inner sense of lack – that millions of us have, - is what is heating up the earth, which will some day make it uninhabit is life My responsibility!) the all claim to or oversimplify, to (Not able. fricking easy, and compared to the kind of hardships that are available so, if cancer, but even dying of be I may been. Sure, life, it always has in that’s been pretty easy so far. nights ago I had a A couple of body. My lower abdomen often feels dark. all the way from Chile. That is almost 6,000 miles from here. Also, the 6,000 miles from here. Also, the all the way from Chile. That is almost at Walgreens. Where are the coco- eight different kinds of coconut water cracked coconuts on a beach some- nuts from? Is there a mountain of travel? where? How far do they, or the cans, January 31: Impact of blueberries my bed watching movies for hours. Very tired today. Have been lying on which are from Chile. That’s part Now I am eating excellent blueberries in San Francisco someone I think, that things, with wrong what’s of in January can eat a big thing of organic blueberries January 28: Sisters and perspectives and Sisters 28: January of two – well, sisters three my with Skype over conversation nice a Had kept getting geographically, the closest who is Laura, – last night. them life, exploring experience into exploring Cull and Po are both dropped. involved in Codependents Both have been and humor. with honesty my if me asked Kathy point one At years. of couple a for Anonymous thinking was I funny. very was It Auschwitz. like be to going is vagina you can’t can check in, but to visitors? Or you sense? Not open – In what I forgot to ask. check out? I noticed that noticing thoughts that day. an interesting experience make it would and I felt, how bad about think would bad, I I felt when I think that I later I noticed that when I feel good, it seem worse. Then not is that it of thinking was I how about something is there and – am thinking was how I because was it maybe that suggested Kathy helpful. true. is think this experience, and I direct the barrier to a was it about useful. and necessary both is that evaluate to way a is certainly There perspective, something that has, from my Buddhist But then there is between Which is as subtle as the difference a feeling of … stickiness. now” and “This is how it is.” “This is how it is right was a shocker. I attribute my well- better than I did last week – that (day week a twice acupuncture medicine: complementary of lots to ness naps, not every day, walking food, healthy after chemo), before and quarts of hydrating coconut water, having to work, no sugar or caffeine, got me. Yay! It can also change and later today, a massage that Tong wrenching never feel far away … quickly. Nausea/motion sickness/gut

20 Crap, I’ve got cancer 21 The albino tiger of the oncology department ‘The Poetry ‘The Poetry My friend in London ordered this poem for me at this poem for in London ordered friend My Cancer of the vagina deflate even the most Four words that could inspired of erections to whisper in the ear of a rapist Four words I want block capitals Four words I want printed in white on a skin tight vest made Four words to shout from a mountain entirely from cancerous breasts This is the opposite of testicular cancer dancer Cancer – the word that rhymes with I’ve got music coming from my vagina Dance with me Four Words the Festival for the Living. She says: “I told a rather nice a rather nice She says: “I told for the Living. at the Festival Takeaway’ hour an and cancer, your and you about bit little very a man young had two Given that he this poem aloud. back and he read later went felt even fact I In good … it’s pretty think before mine I do others to good enough to he read it. Not a masterpiece, but quite emotional when didn’t I Interestingly, it. have should you thought really and I send you, write some pretty are musical (or indeed that you mention that you good poems yourself).” dream about watching a show in an old, cavernous theater, trying to get get to trying theater, cavernous old, an in show a watching about dream pitch-black a was There tricky. was which over, was it before quietly out light the on turn to had you so staircase, huge a of bottom the at room descending. of the stairs before at the top I remembered a meditation experience from a group retreat many years its with poised was light, into turned body my minutes, few a for before: couldn’t I Tara. Green of statue a in as out, stepping of position a in ‘foot’ sustain this god’s body, and my awareness would come back body I into am the more familiar with, a painful transition. It was like falling down, back into solid form. And I could see, I could feel, how it painful is just to have a body like this. My awareness a went few back times, and forth between being a radiant mist-of-light and more substantial form. being It was in an amazing experience, this, and I remember bodies really hurt! thinking that, relatively speaking, wow, Bodies really hurt! open the dark’, August 2008 from an article, ‘Tearing

22 Crap, I’ve got cancer February 2012 What can I tell my bones?

25 What can I tell my bones? Then Pasadini and I drove in a lot of traffic down to Geary St for Met with Dr J, who is filling in for Dr S, who kind of vanished The oncology nurse made various product suggestions. They want want They suggestions. product various made nurse oncology The chemo. C (oncology nurse) was telling us very funny stories – he was very– stories funny us very telling was nurse) (oncology C chemo. And Tong stopped by for a chat.entertaining! I also really trust him. wethough burnout, movie have of kind movies, I any watch didn’t We entertainingan need do I view! nice the with room private the have did book to read. Bossypants was a tough act to follow. C also said my weekly blood tests are very good – he described them as ‘abnormally normal’. He said after the third week is often when hair starts thinning … without telling anyone why. (C, Pasadini and I determined that he is either in rehab or has contracted some big-time STD.) I will meet with him at the end of treatment, to find out the truth no doubt. AnywayI mentioned to Dr J that I am getting acupuncture twice a week and she encouraged me to continue! Medical marathon … state the out Turns O. Dr exam with at 8am, and an radiation for Went ‘normal’. He gave me some medi- far is thus and irritation of my dryness up so many times at night to cation that will prevent me from waking and tests should medications some other the system put in pee, and he I when develop. Realized later that I was a bit panicky an infection only stop radiation rarely, that it He mentioned that they talked to him. that since it allows the healthy has to be done sometimes but to consider allow the cancer to heal (or anyway, tissue to heal some, it’s also going to I think I want a break from the to grow). In other words, even though steady. it is when most effective radiation is don’t! The I really radiation, there to be as little medication as possible (interferes/interacts with with medication as possible (interferes/interacts there to be as little I know Dr O today, will see what he says. chemo). I’m meeting with bad really of case the in days few a for radiation stop they sometimes since I don’t have know if mine are going to rate, side effects. Don’t herbs to take and as usual I felt any infections. Misha gave me some was emphatic about eating more so much better after seeing her. She section, “The Treatment Support protein every day and suggested the Diet” from Life Over Cancer. February 1: Hostile takeover of abdomen February 1: Hostile take radiation of effects the said they when kidding weren’t they guess I I got up eight to kick in. The last couple of nights, a couple of weeks abdomen were the night to pee. It’s as if my lower or ten times during water supply. by hostile aliens who cut off the suddenly taken over Feb 12: Feb a part of like I was “I felt Paulette: special, something really something It didn’t and kind. loving incredibly the I couldn’t understand matter that words ...” Walked around the Mission doing some medical type errands and and errands type medical some doing Mission the around Walked have that I no longer I told a friend on Valencia Street, On the phone suggestion at it … my friend offered the helpful But as long as I’m pills putting ages spent then while little a for bed my on down Lay February 2: A late night better. The acupuncturists today My various symptoms seem much blood counts are etc. I feel so good were very happy with how great my until about 3am this morning and when I am there. Was wide awake that came with the Chinese herbs didn’t know why. Read the sheet Apparently some people get a (called ‘Marrow Plus’) I started taking. do not. I know which one I am – lot of energy from astragalus, some anymore! Laura arrived tonight, and that I’m not taking it at night station in Emeryville. I felt very chauffeured by Ben from the Amtrak a relief not to have to keep track of healthy today – but it’s going to be stuff so much! felt pretty wrecked afterwards. (Still, it’s good for me to walk around, around, walk to me for good it’s (Still, afterwards. wrecked pretty felt and I like it.) I feel emotionally fine, just very drained. inside I’m all right on the chemo. But very pale during started looking Apparently I somewhere. readers hope that my kind is vagina jerky. (I What I have now a vagina. the like more it’s Really exaggeration. gross a is this that realize will someone on boats until sushi sails around place where the sushi in that and start looking of them circle around too long picks it up, but some sauce on it, which Next time it comes around, it has all dry and nasty. that inventing trying to do. And I want to tell you is also what I am usual a isn’t vagina my of description of kind other any or humorous myself … ) stop myself! I do at least amuse pastime. I just can’t tonight suggested a name for my vagina. Someone that I come up with her error. It waitress type, and then realized Flo, as in the southern In was thinking something like Hyacinth McMullen. was very funny. I appar- also is it name, this of qualities excellent many the to addition folks, and also a deceased Catholic nun. I like irony, ently the name of aren’t. claiming things are ironic that possibly people, who take all kinds of in new dispenser. Was pondering elderly Taking right. it get to them for be must it hard how and medication, without or with days, of number certain a for times certain at things and not taking them all at food and with or without other medications, function that the same time. There is something about my cognitive or so. I very much enjoy writing but has kind of lowered this last month that I am easily confused. sometimes in conversations it seems

26 Crap, I’ve got cancer 27 What can I tell my bones?

What Can I Tell My Bones? from What Can I Tell by Theodore Roethke What can I tell my bones? Mist alters the rocks. trapped in a cave. My desire’s a wind itself to these rocks. The spirit declares loose in the shale. I’m a small stone, … Love is my wound scales; with horns, I prefer a serpent with Instead of a devil In temptation, I rarely seek counsel; eat than pray. A prisoner of smells, I would rather of opposites. I’m released from the dreary dance shields me; The wind rocks with my wish; the rain all directions; I live in light’s extreme; I stretch in Sometimes I think I’m several … into the realm of pure song. O to be delivered from the rational February 3: Three poems 3: Three February

Cancer Cells by Harold Pinter which have forgotten how to die” “Cancer cells are those Hospital) (Nurse, Royal Marsden how to die They have forgotten killing life. And so extend their I and my tumour dearly fight. I and my tumour Let’s hope a double death is out. I need to see my tumour dead A tumour which forgets to die But plans to murder me instead. But I remember how to die Though all my witnesses are dead. But I remember what they said Of tumours which would render them As blind and dumb as they had been Before the birth of that disease Which brought the tumour into play. The black cells will dry up and die Or sing with joy and have their way. They breed so quietly night and day, You never know, they never say.

28 Crap, I’ve got cancer 29 What can I tell my bones?

Cell by Margaret Atwood You have to Now look objectively. is beautiful. admit the cancer cell you’d say, How pretty, If it were a flower, and pink petals with its mauve centre pulpy thirties or if a cover for a How striking; sci-fi magazine, as an alien, a success, all purple eye and jelly tentacles and spines, or are they gills, creeping around on granular Martian dirt red as the inside of the body, while its tender walls expand and burst, its spores scatter elsewhere, take root, like money, drifting like a fiction or miasma in and out of people’s brains, digging themselves industriously in. The lab technician says, It has forgotten it wants is more how to die. But why remember? All To take amnesia. More life, and more abundantly. To keep on more. To eat more. To replicate itself. doing those things forever. Such desires are not unknown. Look in the mirror. brachytherapy, also known known also brachytherapy, This is based on data from studies studies from data on based is This While lying there with the needles, I kind of moved away from visu- from away moved of kind I needles, the with there lying While Laura asked when the post-treatment assessment happens. She said assessment happens. She said when the post-treatment Laura asked it will mean more pain after Anyway I’m glad we met her, though Went to a class today offered by volunteers for the American Cancer Cancer American the for volunteers by offered today class a to Went alizing light … Because of the radiation I think, which now that I think alizing light … Because of the radiation I think, which now that I think February 8: Utter contentment I thought, she’s going to stop Yesterday when I was with Misha, liking me. I thought I might have been a little whiney about things. (Something similar today with C, the oncology/chemo nurse.) A flash of the thought, Oh dear I am such a needy bastard in pain today, all kindsa pain … After the acupuncture and going to a chi gung class afterwards, I felt much better on all levels. Some of you are members of the Needy Bastards fellowship, in which case you might get this more. they usually do a CT scan a month after treatment ends. But because of of because But ends. treatment after month a scan CT a do usually they so scan, PET a up mess can it dies, tumor the as changes inflammatory the PET scan. This brings up all for three months is the amount of time will I But live. can I where and insurance medical about issues of kinds my staging was 4B (the highest think about that later. She also said stage you can get.) The doctors at my health plan never specified. This it heard of kind I’ve me. for than Laura for upsetting more possibly was all (even if I haven’t heard it!) treat- during exam an do to not be would thing normal (the exam the doubts any have really didn’t I painful). too it’s because partly ment thought it was a good idea. It about my doctors but lots of other people was nice to talk to women doctors. on cervical cancer, which acts similarly to what I have. (What I have is (What I have is which acts similarly to what I have. on cervical cancer, it seemed that the on.) She did an exam and said too rare to do a study she could say, not having seen the radiation was working (as much as after treatment tumor before). She said the radiation keeps working to die and the body absorbs stops. In other words, the tumor continues the dead cells. February 6: More pain February 6: More with Dr C at asking if I wanted an appointment Got a call last night been forwarded at 8am. My records have already UCSF this morning would treat me in her and, in short, she said she to her. We met with treated. being am I way the exactly February 5: Too much excitement much 5: Too February to continues region my nether and nauseated, tired and deeply I feel when is which Wednesday, about I am nervous glass. ground feel like Clara Santa to down straight drive then 8am, at chemotherapy for go I of session first my for drive) hour’s an (over tips and It’s pretty much … Feel Better. called Look Good Society. It’s Plus or eyebrows. any hair, eyelashes, dealing with not having tricks for was two It fun. was class the of Some makeup. donated free of a bag I went minutes, ten last me. By the for long too – long, however hours worried I might pass out. dead pale and was as internal radiotherapy, which starts with spinal sedation. starts with radiotherapy, which as internal

30 Crap, I’ve got cancer 31 What can I tell my bones?

The radiotherapy dosage today was the equivalent to what I get in the equivalent to what I get in The radiotherapy dosage today was After chemo today, drove down to Santa Clara for internal radio - internal for Clara Santa to down drove today, chemo After I had all sorts of things attached to me and tubes all over the place. place. the over all tubes and me to attached things of sorts all had I minutes in a chill out room, I However, even after spending 45 February 10: Meeting with Dr O chemo- the cisplatin, that us told O Dr communicative and cute The therapy drug I am on, isn’t necessarily associated with hair loss. That are chemos different, are cancers how again showing surprise, a was different, treatments are different. He said my immune function is not seriously low. My magnesium & calcium counts are high, my kidney a week of external radiotherapy. The device they used to administer device they used to administer a week of external radiotherapy. The device, covered with blood. it looked like some kind of medieval torture which were delivering high dose It involved 14 long hollow needles, The tumor. into the wires, directly radiation via things that looked like the nine minutes of treatment. They length of each wire changes during doesn’t actually have any nerve were mostly invading the tumor which less invasive than a normal endings/feeling, so this was apparently warned was (I now me from flowing are piss and blood of lot a But exam. feeling of ground glass seems to about this), as the pain returns. The Must talk to Dr O about alternate between three adjacent apertures. that tomorrow. Still, it was somehow a very positive experience! of it is essentially light, the sun being the major source of radiation. In In of radiation. source major the being the sun light, essentially it is of more to something I changed or hot. So … dry, feels too light any case, earthy, smokey. more watery, therapy. Suffice it to say, the fear wasmisplaced. It was the best thing there, a half hours I was of the four and Well, during most ever! Why? time. long a for in been not has it state a super-relaxed, was body my Mentally, contentment. utter felt I while). a been (also, pain no felt I At the said “I love you”. could think of and everyone I I went through incredibly felt but up, doped was I short, In lucid. very felt I time, same awake and happy. Three electrode things on my chest to get heart rate, a blood pressure a blood pressure on my chest to get heart rate, Three electrode things minutes, 5 every it/inflated checked automatically that arm my on thing a weird red neon thing on an index finger to check oxygen absorption, (which I think thing across my nose measuring CO2 a catheter, a tube They breathing). is, that exhaling, I’m if see to checking just it’s means a lot of the time) (there were 5 or 7 people around all seemed surprised They told me I to things, and had my eyes open. when I would reply everything. There anything, but I think I remember wouldn’t remember at bench the on of lying me reminded ceiling that the panels on were at the sky. Camp Double Bear and looking up in an excellent mood. My pelvis and couldn’t walk. But by George I was completely numb. Laura pulled possibly more importantly my feet were to managed and out me wheeled nurse awesome the and front in up to get take-out Chinese food (I get me into the car seat. We proceeded and eat it in the car (I couldn’t hadn’t eaten since the previous night) could back in San Francisco I time we were By the out of the car). get than they warned me about. walk. It took a bit longer to wear off in Sanskrit. Sanskrit. in has probably made it Although I have what is called ‘primary vaginal cancer’, my subjec- have what is called ‘primary vaginal I Although Saturday night was tough. Woke up many times in pain. I’d felt felt I’d pain. in times many up Woke tough. was night Saturday I forgot to say about the radiation treatment that they (necessarily) that they (necessarily) treatment say about the radiation I forgot to timeline. I talked about is the post-treatment Another thing we tive experience is not so much about the vagina anymore. The vagina tive experience is not so much about the vagina anymore. The vagina February 14: What is “Suva”? And music, or what passes for it February 14: What is “Suva”? And Someone mentioned that they figured “SuVa” was short for “Suvanna’s current situation, but to clarify my Vagina”. Of course that works for the version of my Order name. Other intention, Suva is simply a shortest of which grind on my ears for people seem to favor Suv or Sue, both including wrong, all of all. Of course they’re some reason. Suvy worst Suvanna. The name I was given when I was ordained in Tuscany in Radiance” “Golden means is Suvarnaprabha, which 2001 My attempts to simplify it for Western people (who tend to go cross-eyed when they hear a five syllable Sanskrit name) about. writing on planning was I what not that’s But complicated. more Had it makes me a little nervous. Had enthused about vicodin, but taking of weeks 6 to 4 takes it said who Danamaya, with conversation good a daily use to become habituated. February 13: Le weekend February 13: Le at the ritual at the Buddhist It seemed to me that were a lot of people and weepy for a while. Center on Saturday and I felt a bit overwhelmed (with some bells and a drum that We chanted the Aksobhya mantra meant cooling water and blue light. sounds like the ocean), which to me little guided meditation and ended It was very beautiful. Then we did a with the Heart Sutra and the gate mantra with offerings of lights and my normal meditation posture the beautiful orchids. I was able to sit in fantastic. Afterwards Padmatara, whole time without pain, which was spring rolls and we all had Pasadini and my sisters made Vietnamese two watched then Elaine, and Shantinayaka with downstairs dinner episodes of Nurse Jackie. function is very good, and I haven’t had any side effects from the chemo chemo the from effects side any had I haven’t and good, very is function still but are a lot gone down have counts My blood nausea. except the dosage of that my said somewhere I think I range. healthy within it isn’t. It’s the maximum he said today that drug is low – chemotherapy combined, not it’s (When radiation. with combined it’s when for dosage often.) dosage given less it’s a higher if especially over, is treatment the after Also, bladder. my punctured inside a tumor-sized hole may end up with is eliminated, I the tumor months. several take could but own, its on heal will it Hopefully, me. These ideas don’t bother me nearly as much as they did the first timeI heard them. my situation that on date x I would know what guess I had this idea I get a CT scan, to work like that. After a month is. But it doesn’t seem be a lot more info, I get a PET scan. Then there will after three months Happens What See a It’s provisional. somewhat seems all it still but kind of situation.

32 Crap, I’ve got cancer 33 What can I tell my bones?

Up until the day of my diagnosis I was planning on leaving San Up until the day of my diagnosis I was planning on leaving San Food preferences have shifted toward liquid – soup and protein/ Padmatara and I are not really good chemotherapy tourists any any tourists chemotherapy good really not are I and Padmatara Who forced it? I did, An excellent forced march with Shantinayaka. The Indian woman anesthesiologist didn’t dope me up as much as up as much as anesthesiologist didn’t dope me The Indian woman Lesson: If possible, do not take your piccolo for granted, or the breath breath the or granted, for piccolo your take not do possible, If Lesson: Francisco in a few months, probably to New York City for a while and Francisco in a few months, probably to New York City for a while and gotten really haven’t I possible. became that if London West to then my mind around the fact that if I leave San Francisco I will not be able fruit shakes (especially raspberries lately, so good!) I still eat and enjoy fruit shakes (especially raspberries lately, so good!) I still eat and enjoy other things of course (like Cameo cheese, yum!, and crackers) but find liquids much more straightforward for digestion. more, taking pictures etc. as if for first time on a foggy cable car ride. from the cafe, a visit with Tong, and Good egg salad sandwiches though a few episodes of Nurse Jackie … calendar. With the radiation I asked Pasadini to put it on the helping I’ve pretty much been on my back, thingy yesterday and chemo today, and up myself pried I So days. two last the chair, or car a in sitting or Dolores Park and back and I felt so we went for a walk up the hill past dire about was chat the of Most afterwards. energetic and better much expand conversation topics. medical situations. Note to self: Must the Russian man last week, which was fine. Although those in the radi- the in those Although fine. was which week, last man Russian the silence this week than last, poor ation room had to endure much more were a lot less trippy-looking. things. From my point of view, things with lead walls – full of men Just another room – this one no doubt with my vag, doing stuff that (some of them wearing ties!) and women who is apparently kingpin of it blissfully I cannot feel. Met the physicist the to talking were I and Julie When people. nice really all are They all. and asked how I got on last week. I nurse, Dr L came in and said hello just the drugs (since I loved him love him, and this proves that it’s not before the shot in the spine). February 15: Things weren’t as trippy as last time February 15: Things it like reason I the I think radiation. internal the getting of like sort I of amount large a pumping is doing are they what know I while that, is of being there, body via needles, the actual experience radiation into my relaxing when the of the drugs, is relaxing. It’s also no doubt because that the external really does not have the side effects drugs wear off. It has. is simply the provocateuse. Now the situation is more like a sad trio trio sad a like more is situation the Now provocateuse. the simply is cupboard. and airless in a hot to play forced and together crammed are tuners broken, are Strings violin. a and piccolo, a tuba, a is There time. water for a very long had a drink of musicians have not lost. The function. fulfil their designated continue to try to They each of an enormous amount seems to require it. My body now that drives level a cause peeing and Shitting management. pain and symptom rather trauma word the used have I past the (In trauma. physical of varies it pain, no with day per hours many have usually also (I lightly.) a lot.)

Had fluffy cornmeal pancakes for breakfast. With syrup! That’s what what That’s syrup! With breakfast. for pancakes cornmeal fluffy Had – today pulse my felt Misha shrinking. is tumor my say docs The Dr O clarified more about the immunity thing. Apparently chemo was great. I really love medita- Did manage to meditate today which to write about. My friend said Oh yes, I remembered what I was going Day 4, 10am Feel shaky, weak, and moving slowly. Dosed up on zofran and decadron to prepare for the ride to Redwood City for blood test today. I had some other observations about the retreat but I’m too tired to recall them. Did have a cool dream yesterday about a huge house way up in a huge tree. Day 3 of retreat hours so or 15 Sleeping difficult. also and wonderful, is retreat on Being is not right for me (forgot to give a day/night, and much of the food know for certain the causes. I was guidelines for food). Of course I never up without almost passing stand and couldn’t my room lying down in walk outside. before I could stand up and waited a couple of hours out, so Danamaya came back with me and was very helpful as always. February 21: A weekend retreat + medical Fat Tuesday February 21: A weekend retreat to get health insurance, which effectively means that I cannot leave leave cannot I that means effectively which insurance, health get to Affordable and Protection “The Patient Obama’s Unless Francisco. San to imagine. is hard which happens, Act” actually Care sausages (if you Quorn Also found out you can’t bring I call splashing out. off) from England are, never mind, you’re better don’t know what they great tragedy. risking a $10,000 fine. This is a to the U.S. without not wrist, your of edge the on fingers three is medicine Chinese in which very different, I – and said my ‘tumor pulse’ was about blood pressure the doctors said. weaker. I hadn’t told her what believe she said much is gone after obviously I guess, that the tumor So that’s good. I hope, Cancer treat- I don’t have to do any more treatment. three months, and to now, doesn’t leave you with ment, at least at the point I’m getting much of a life. really bad infections, pneumonia, patients can get very susceptible to slightly be might I that is level my said He cold. a catching from just etc., cold. more prone to catching someone’s regular much dropped the ball on it. I do a tion, it’s amazing that I have pretty lot of mindfulness practice and reflection, but now feel the need for the sitting on the floor again. formal stuff too, especially enjoying commented woman the that birth, giving woman a witnessed she when clam”. I know how she felt. that her vagina looked like a “terrible February 16: A terrible clam February is kind of challenging yay! Packing on retreat until Tuesday, I will be last night rough a Had brain. a half have and knackered am I since body My itchy. very very and 4am about until sleep couldn’t – night good. itching, felt pretty today, no pain, no However, full of tension. to change. Condition subject

34 Crap, I’ve got cancer 35 What can I tell my bones? was meant to be my main by. He was meant to be my main The formerly elusive Dr S dropped I have thus far successfully This brings up the whole area that Anyway, Julie and I had lunch at Udupi Palace and I splashed out I was trying to think of what the cumulative effect of radiation feels feels of radiation effect cumulative the of what to think trying I was February 23: Notes from the last chemo February 23: Notes room every chemo today at 8am. I’ve had a private Julie and I went to awesome. My oncology nurse C time I’ve been there, which has been new patients during the times I said I lucked out that there weren’t and entertaining. was scheduled. C has been both super-competent should have brought him a prezzy, Found out he is fond of toffee, really folks as well … thought that yesterday with the radiation the for him with met I after right month a for disappeared but doctor first time. There was mystery around He O. Dr oncologist radiation the or anyway, C not well – anyone tell what happened he did not – noticed I sad. little a seemed he and weight some lost have to seemed him met I when detect not did I which accent interesting slight very a but I suppose will not ask. He is my before. I’d like to know his story … brachy- main doc moving forward. Once I get my HDR (High-dose rate appointment for a CT scan and one therapy) next week, I will make an it. with him the day after to talk about for clear that to happen. It is going is about what avoided: speculation different drastically be to) (continue will life my reasons of kinds all from how it was a few months ago. And even though I’ve been incredibly related) things. Will I live in low energy, I am antsy to do (non-cancer be proposed and if so, will I do it? San Francisco? Will more treatment When I stop working for the Buddhist Center (I was laid off – given six regular a get I will diagnosis) my got I before shortly – notice months’ job? Will I move in with someone in my family?? Will the tumor be completely gone? What about the other ‘local metastases’? I do know all shows scan PET eventual the and gone is tumor the if even that clear, it doesn’t mean I’m done with it. with a mango lassi which I drank in about one minute. Balanced by Home at Last Home at Mardi a (with appointment radiation last my to me brought Karunadevi to the talked from the retreat. We also way home Gras theme) on the to the other health who was filling in for Dr O, then nurse and a doctor a UTI, probably test, which came out positive for center for a urine Then we had on the retreat. I didn’t do stuff of preventative because me to Misha’s at Fresh Choice. At 4 Robin brought an excellent lunch on the table and woes. Went into a very deep sleep where I told her my I woke up with no pain. felt wonderful when like. You don’t feel anything when getting the treatment – it’s like the the – it’s like the treatment getting when feel anything You don’t like. And burnt. getting yourself not feel sun and lie in the You can sun. and blis- is badly burnt this point – the skin it feels like at that’s what anywhere Which can feel too, and raw. the insides are burnt tered, and pepper with sprayed if (as burning to achy to itchy to neutral from razor blades … spray) to Cancer Has Made Me a I have become a lot less critical of myself since my diagnosis. This myself since my diagnosis. This I have become a lot less critical of I took my first Cipro this afternoon for my urinary tract infection. of writing this to having spent 30 of the minutes (I have to confess is at least partly from having somehow become psychologically a lot lot a psychologically become somehow having from partly least at is do what I need to do (say nine out simpler … but I notice how I can just of ten times!) and not feel conflicted or guilty. Now I want to lie down. canceling I’m Now day. the of middle the in movie a watching I’m Now something. Now I’m on retreat doing virtually nothing on the program! not but I’m not be great for me, may Now I’m eating something that going to sweat it … Possibly I don’t have as much energy for criticism more have I Once functions). complex psychologically more other (and energy I may pick it back up again, as if retrieving what’s familiar from a luggage carousel. Shallower to think that Person by Miriam Engelberg. It’s reasonable occasionally have I … complaints your about judgmental be would I more been has that think I but whinging repetitive with impatient been I hear a problem someone has, it the exception. These days, every time the Sure, empathy. more have I anything if think I bad. really sounds have cancer, but there are other complaints come from people who don’t about money; bad health; all the ills. Recent examples: serious concerns others and feeling threatened and pain around comparing oneself to relationship ending … insecure; worry about one’s kids; mental illness; many How are. us of many anxious and ourselves of critical how see I guilty about? How many at least vaguely that you feel things do you do even with cancer I’m still things are you worried about? Remember, Auntie Suvanna! True confessions: how I feel about other people complaining True confessions: how I feel about other book the in this about comic great a There’s really good unspicy creamy tomato soup. Liquid – yes. Blenders are my my are Blenders – yes. Liquid soup. tomato creamy unspicy good really a “Weekly with snackage excellent by more brought Rochelle friend. has illness my said She like! I things with out fill to me for chart Treat” she had. know she didn’t in her which the Jewish mother brought out soup and borscht-like some nice simple me! Pasadini made Lucky for both we which awakening”, an “2012: documentary, crap a watched we enjoyed. I’m and there is no blood. is not as bad Misha the pain Since I saw Also pain. of kinds different the with help that things the all learning and do, to stuff the all remember and it, do to energy the have to need taken much of the stuff with me. I haven’t I have when to make sure of I’m kind really needed it. felt I’ve mostly I haven’t all, vicodin at the needed, as Definitely medication. taking to comes it when minimalist a dark red and blis- in case’. My inner thigh skin is not so into the ‘just cancer blog self- to post a photo, but apparently my tered. I’m tempted places I look like I’m about limits. Certainly in some disclosure has its and say 500 years max. 5,000 years old. Or let’s not exaggerate electrocution. about careful Super water. bath warmish in sitting while at way stupid a in dying once, than more me to out pointed been has As be … unfortunate.) this point or possibly any point would

36 Crap, I’ve got cancer 37 What can I tell my bones? We went for falafels at this place Julie knows in San Jose from from Jose San in knows Julie place this at falafels for went We This is a bit off-topic but I do think I need to express my needs more more needs my to express I need think I do but off-topic a bit is This February 28: Last brachy in San Carlos last night, working Laura and I drove down to Julie’s which was this morning at our way toward my last cancer treatment time. No complaints, no pain. The 7:30am. Didn’t get the fun drugs this procedure but they’re mostly too nurse took some pictures during the did get to hear about a Bollywood depressing (for me) to post here. We where dancing was required. birthday party Dr L had with his daughters she had ever been to. The nurse said it was the funnest party Not pale. ghostly went nausea, then … shaky very felt I and college, were different. Anyway, back at sure if that was because the meds Julie’s, went into a deep sleep for hours. Feel fine now thoughstill about it since I am getting more little shaky. It’s hard to get excited a Still … tired and nauseated, and have an infection. February 26: Complaints about going out February 26: Complaints realize the degree wonderful yesterday, but made me My massage was than, say, half an hour, causes some to which leaving my house for more I do not have a is messed up so I have to pee often. anxiety. My bladder special gear I need or bowel control. Plus pain, normal degree of bladder that it’s getting car sick … My friend commented to keep with me, and to spend some time with Tong. was good Anyway it like having a baby! I also managed to get in my Costco fix, which I need around every two years. clearly. There are things about my experience that other people are not not are other people that my experience about are things There clearly. in be really can’t I that example, For out. it spell I unless get to going very am I way a In pain. me cause (later) can foods certain That sun. the fragile. People physically quickly, and am rather but tire very healthy, more. bit a it know to need probably I course. of general in this know many to or having so needs so much, used to communicating I am not to talk if you would like tell me your troubles to. Anyway, pay attention them to mine. I deeply prefer Most of the time about them. The difference between the pain of spiritual practice and the pain Real spiritual progress involves pain. Our limits must be acknowledged, acknowledged, be must limits Our pain. involves progress spiritual Real and pushed. People from every era and culture are deluded by common, something or Buddhism, that imagine We heaven. of dreamings spurious else, will bring us to a place where difficulties are eliminated, without our own effort. But this is not possible. Since we can no longer believe in heaven, we choose substitutes, and assign to them the attributes is easy and blissful. heaven – where everything of we’re accustomed to is that we can learn to appreciate the former – at least in hindsight. Because the pain that occurs as a result of spiritual a motivation, truly the pain regarded with some degree of insight spiritual and warmth, is a door to successive stages of We total may liberation. bang our heads against the door, and it may hurt, door but is opening, if however slowly the – what more can we ask? This process reason the is It known. ever have I feeling satisfying most the constitutes in Tibetan Buddhism that enemies and difficulties can be referred to as the ‘Tantric Guru’. Opening the door open the dark’, August 2008 from an article, ‘Tearing

38 Crap, I’ve got cancer March 2012 The human body at peace with itself

41 The human body at peace with itself Dr O and the nurse said I am ‘healing normally’. I told them all my normally’. I told them all my Dr O and the nurse said I am ‘healing I asked for some specific info about what the scans mean (the CT Camp Sawyer the at walk short a for went I appointment the After Healing marathon I seem to have switched from downing coconut water to eating oranges – at least three a day. Trying to keep up with the acidophilus twice March 6: Some useful toiletries and a meeting with a doctor March 6: Some useful toiletries night thinking about my employ- I was feeling really depressed last a package that arrived from ment/career/etc situation. Then I opened other lovely things included a Nora in Hawaii, which among many and I were laughing for a long bizarre bar of soap. Pasadini, Padmatara time. It definitely cheered me up. to do, eg, more astringent for my symptoms and they suggested things (if you must know, both kinds!) and peeling skin. The bathroom urgency couple of weeks. This is the biggest fatigue will probably continue for a want to leave the house. difficulty as it means I often don’t scan at the end of May). I had it scan in a couple of weeks, and the PET can’t check the size or existence pretty much totally wrong. The CT scan the in new something for looking basically It’s tumor. primary the of short, I’m probably not really going lymph nodes or bone structures. In cancer status for three months. He to know much of anything about my suggest probably would S Dr something find did scan CT the if that said a prospect that fills me with angst. chemotherapy within a few weeks, from water the with reservoir the is think I what borders which Trail, = again more walking start to need I Sierras. the in dam Hetchy Hetch more energy/less depression. It was a warm, pretty day. March 4: How am I? (update from my perch) March 4: How am lot of a shaky I feel Generally shake. hands good. My Pretty am I? How eaten for a long time, you haven’t you feel when like the time, kind of and when very quickly, easily, tire part. I bruise except the hunger … I did walk a few minutes to make it to a bathroom nature calls, I have overpass the to made it Dawn, yesterday with Peaks Twin toward up walk). That felt good. Then is about a mile I think (it’s a very steep which website. his for $5 on he is selling show C.K. we watched the Louis should be you haven’t heard of him. His nickname He’s a comedian if my future anxiety about of degree Some Philosopher. Disgusting The creeping in. So many unknowns. Trying to see it as an opportunity! March 20: March at acupuncture I took A picture

The net effect of it all was that I I that was all it of effect net The emails to catch up on, and I lost my my lost I and on, up catch to emails anxious. Lots of Lots anxious. Apparently I have a “vesicovaginal fistula”. A fistula is an “abnormal “abnormal an is fistula A fistula”. “vesicovaginal a have I Apparently I crave protein or twice a week. This is because I’m eating meat once I First yesterday. appointments health-related helpful three had I The human body at peace with itself Is more precious than the rarest gem. Cherish your body. It is yours this time only. The human form is won with difficulty. It is easy to lose. All worldly things are brief, Like a flash of lightning in the sky. of a raindrop This life you must know as the tiny splash being. That disappears even as it comes into Therefore set your goal. it. Make use of every day and night to achieve March 9: Support group – not I went to a support group yesterday in South San Francisco. Bad news even wasn’t I that worker social the told I up. showed me but one no is, sure what I wanted to talk about, just that I didn’t know anyone else with cancer … . Good news is we ended up talking for an hour and a she know) I as far (as cancer have doesn’t she While great. was It half. talks to a lot of people who do, and their oncologists. a day and other maintenance things I’m supposed to do, all of which which of do, all to supposed I’m things maintenance other and a day depressed, with feeling to do probably wayside, by the lately has gone and unmotivated internal between two body tissue, usually passage within tubelike so care about this vagina. I don’t such as the bladder and organs” – from it. since I don’t have any symptoms much at the moment effort to get a lot to eat a lot of it), and it’s too much (and have been told Also I am eating what through vegetarian sources. of, and varied, protein wonton soup. is oranges and sometimes is I crave, which sometimes what he did Seeing him was really great. Mostly saw Alan the shaman. I just felt all the … for me it was very, very simple. was help me relax relieved, and I felt in my body, then I felt it be various areas of tension Alan) a cheetah clearer, lighter. At some point (for that something was and excellent. Then I saw Misha the acupuncturist, appeared, which is door. next class gung chi the to went March 7: The human body of a poem by Tsong reciting part At Alan’s I ended up spontaneously from around 800 years ago. Alan Khapa, a Tibetan Buddhist master been a favorite for a long time. It suggested I recite it every day. It has is what I must remember. phone (going to give it a few days.) Going to pick up the moisturizing pick up the moisturizing days.) Going to to give it a few phone (going … so and meditation and walking acidophilus, supplements, again, the much maintenance. feel both more relaxed and more motivated.

42 Crap, I’ve got cancer 43 The human body at peace with itself I meditated today for the length of time it takes to burn a long stick stick long a burn to takes it time of length the for today meditated I One of the things I told her was that I wasn’t particularly afraid of of afraid particularly I wasn’t that was her told I things the of One bad tell their patients oncologists don’t said that sometimes She also March 16: No one knows when they are going to die I ate a spicy burrito by accident (I mean I forgot to say no hot salsa) and I had no ill effects, or nothing worse than usual. Which is cool, because March 14: Gratitude and underpants said the word ‘underpants’ in a I think that I have never naturally right. Even worse: panties. I sentence. I mean, it just doesn’t sound and ‘pants’ say England, they In guess I was raised on ‘underwear’. is a better system. Which ‘knickers’ to mean underwear, which I think I am wearing women’s underwear somehow brings me to my point … few months a for underwear been wearing big ugly men’s today. I have much more painful for someone now, which probably would have been I was pretty sick of it. who’s more of a lady than I am. Still, of Shoyeido White Cloud incense, my favorite, with one rain-spattered 11am ’til slept I nice. is air Francisco San warmish Rainy open. window and felt great when I woke up. Grateful I can sleep as much as I want. General advice eg. a stressful full-time job Don’t think about making huge changes, laughing, vacation Think about doing things I enjoy, friends, … money … stability Think in terms of … simple … de-stressed Vacations Take a vacation ‘between treatments’ Refundable tickets Not too remote (close to a hospital) Examples of good questions Examples of good always going to be on chemotherapy? Do you foresee I’m treatment, how long would I live? If I don’t do more if I don’t do it? – What is it buying me? What Re more chemotherapy of cancer look like? What would a decline with my type dying; my fear is more around quality of life and a potentially constant constant a potentially life and quality of around is more my fear dying; she by which people, that ‘spiritual’ She said cancer. with struggle about in a similar way meditate, all spoke who pray or meant people of which I say the word. All people can’t even said some other death. She average of touch with the I am fairly out but no doubt found surprising, were. Joe as it about asks the oncologist know. (But if she they say they don’t news, or are S) Dr (eg oncologists medical Usually her.) tell will they patient, a of the big picture they do it more and have more better at it because She said it helps to ask very a radiation oncologist. than, for example, specific questions, and if you get a bunch of different answers, to take they don’t know … All of my doctors have said something in the middle. don’t. it seems like they I am not eating super healthy food anymore. anymore. food healthy super eating not am I If you mention to a Buddhist that you don’t know how long you are you long how know don’t you that Buddhist a to mention you If say much; group today at Geary Street. I didn’t I went to a support lecturey advice giving. The social There was some of what I would call March 17: Down the rabbit hole set I so morning, this day practice a of part leading be to meant was I emits light rather than sound, for my alarm, which is one of those that angled for maximum light in my 9am, and put it on my magazine rack face, so there was no chance of me missing the wake up call. But when I woke up this morning, the clock said 12:15! Crap! I missed the part through slept I guess I happen? it did How leading! be to meant was I it or it didn’t go off. Crap! I went into the kitchen and Pasadini asked, Weren’t you doing the practice day today? I said yes, but I failed to wake up, I don’t know what happened, but I missed it. I was still very 12:20 was it again up woke I When bed. in back got I so somehow tired nightstand the on was watch My passed? had minutes 5 Only hmm. … general In food. spicy like noticed Ius knows. When I you that none of they may tell going to live, In one of the examples. often lately, this was irritated more was getting confusion be to do with of kindness, it might feeling like a lack addition to Ultimately, ultimate plane. and the relative between difference about the of us are already same boat. Relative speaking, some yes, we are all in the at sanghaour time bailing water. I led a meditation spending a lot of of coming home. I really enjoyed, had a strong sense night, which I really shrine. people. I got all misty saluting the felt so happy to see have dealt with fascinating. Some of those people listening was rather pain more lot a endured and year after year cancer of uncertainty the woman had had a lot of compassion for them. One than I have. I felt cancer five times, three different hospitalized for had bone marrow cancer and was (closer to my age) kinds of cancer! drugs administered 24 hours a chemotherapy – seven different chemo woman Another to wanted he month a around for pain much so in was he said guy A day. gotten her diagnosis in February tear off his face. One woman who had lady had had a tracheotomy. said she sometimes cried all day. One Bob tell of them, “Let’s let said to one point she good. At one was worker of letting People talked about the importance experience.” about his us that’s when being unhappy or crying just the emotions be what they are, how it is. These people lives, possibly have really fought hard for their language. my not maybe that’s just or of, I am capable than harder much with them. Almost all of them Mostly I did not feel I had a lot in common I realized I. than older many years generation, a different from were about their situation, and that no that none of them have any certainty say to me, Here’s what’s going to happen. The ever going to is oncologist no and time, of periods over suffering of lot a entail to treatment tends just the way it is. one knows if it’s going to work. That’s As evidenced by the half-pint of Ben and Jerry’s last night. I’m doing all all doing I’m night. last Jerry’s and Ben of half-pint the by evidenced As tired lately been more I’ve that maybe to me It occurred though. right morning a shake in the I used to have am eating less protein. because I again. to start doing that of protein. Going 20 or 25 grams which had

44 Crap, I’ve got cancer 45 The human body at peace with itself

I did the right thing in that I did not check that box, since there I did the right thing in that I did not check that box, since there I got a 120-page PDF file recently containing some of my medical I was down there by 10:30 … Then I didn’t grasp what time lunch lunch grasp what time … Then I didn’t there by 10:30 I was down March 21: Depression PS I felt that in the interest of I don’t want to overstate my depression. commonly very depression Apparently it. mention should I balance with it, it comes and goes. happens post-treatment. I am working is real progress – for example, no Looking over past blogs I realize there having to do chemotherapy … but more terrible clam. I have a fear of and being nauseated sounds way come to think of it, my hair falling out better than being burned by radiation. - isn’t anything they can do or not do about it. All it would do is poten tially mess up the massage! I circled both Medium and Strong. And this woman called Kai kicked my ass! She also asked several times whether - it was all right, which is partly why it was. When she stood on my shoul to hard was it lungs, my and blades shoulder my apart crushing ders, answer, Good. March 20: Hello, depression frus- growing than different something do to plan to me for time It’s expectancy life projected my out find to waiting Francisco San in trated … you think? March 22: Thai massage rocks a new place up the street I had a great day. Paulette and I went to They give you a sheet to write that offers traditional Thai massage. parts the circle and Strong) or Medium (Gentle, want you pressure the with section a also was There on. focus to them want you body the of as asthma, arthritis, and … cancer. checkboxes next to conditions, such records from my health plan. It doesn’t include a lot of things, such as of things, such as plan. It doesn’t include a lot records from my health apparently It’s mostly about the scans. Anyway, email correspondence. uterus”, so that’s something. I have a “mildly generous March 18: The left ischium etc. March 18: The left it would take was on this blog. Who knew that all This is my 75th post … prolific cancer to make me – it said 10am. Or was it upside down? Have I fallen down the rabbit rabbit the down I fallen Have down? it upside Or was 10am. said – it doesn’t really my clock out that Turns disoriented. I felt intensely hole? that home, even wasn’t since Pasadini and not upright, when it’s run first the up woke probably I and dream, a been have must conversation 10am, it. Now it was time, but didn’t know the right time at around with confused, was, I there and starting, was day practice the time the case of bed head. eyes and a severe smeared under my mascara Being a schedule for me. kindly wrote out though Padmatara was, even am I Perhaps me. upset of kind time about continually confused so to see people. bit too soon? Anyway, it was great jumping back in a a a and to discuss it; to A theme that is coming through lately is that to some degree I am is that to some degree I am A theme that is coming through lately my head. If the doctors told me But all this is just stuff going on in In another one I suspected that I was dreaming. So I asked myself, I asked myself, that I was dreaming. So In another one I suspected Big day yesterday. Brunch at Green’s with Julie and Morgan and and Julie and Morgan at Green’s with Brunch Big day yesterday. March 31: My senior citizen pelvis S Dr with meeting a scan; CT I had a Wednesday On expecting to die in the not too distant future. Of course, I’m also aware aware also I’m course, Of future. distant too not the in die to expecting I am more afraid of life than of that this may not happen. Sometimes that. I’m not depressed. Life has death. I don’t know how to explain had Having confusing. and relentless also is it but course, of joys many at the Center ending and my this cancer experience, with my tenure my medical situation, I don’t know travel options severely curtailed by which direction to move in my life. I was very likely to be fine and cancer-free forever, that would told me I am likely to die in a year, certain kinds of thoughts. If doctors cause predic- no far, doctors have So thoughts. kinds of other that would cause happens. Sometimes that means tions, and whatever happens is what subtly develop themselves. It’s potential scenarios unconsciously and difficult to see perspectives or mental there is some kind of thread that is linking them to the past, the future, states as temporary. Because to everything, they can seem substantial. Tomorrow I will perhaps know more about my prospects. P.S. I love the word labyrinth. March 28: Labyrinth poem in morning meditation. I have been reciting the Tsong Khapa am I that is anxiety of go let can I reason the of part or reason The and committed to enjoying my life. Kathy commented today how calm angry or depressed or sad. I said, happy I seem. She said I didn’t seem I am a bit sad, but that’s all right. How can I tell if it’s a dream? There is some question I need to ask I need to ask it’s a dream? There is some question How can I tell if is give-away the realized I up woke I When it. remember can’t I but had two I’ve also it’s a dream.) are asking, you (If that question. asking thought about in ex-husband Michael, who I haven’t dreams about my a together stayed only and believe I 1983 in married were (We years. longing. and of tenderness felt a great deal I dreams, few years.) In the March 27: Brazilian Jesus March 27: writing a super- dreams. One was that I was I’ve been having memorable most important All this stuff was happening but the important poem. thing was to finish mypoem. I only remember the first line, something Jesus”. like “Looking for Brazilian March 26: Greens and family and what’s next? what’s and family and Greens 26: March on a lot commented have short, people is now my hair because I think be we must suggested woman One I look alike. and much Paulette how she said, the stink eye so both of us gave her daughter and mother and I meant sisters! and departures. airport arrivals niece. Hotels and sisters and complete bone scan. Doctors are so geeky. They talk so fast, barrage you you barrage fast, so talk They geeky. so are Doctors scan. bone complete

46 Crap, I’ve got cancer 47 The human body at peace with itself In In Is the best way to to way best the Is live more than five years. On He also suggested I discuss my concerns about about concerns my discuss I suggested also He When I got home there was an email from Dr S: “The bone scan scan bone “The S: Dr from email an was there home got I When Well, I had 24 hours of thinking I would likely be free of scary drug I felt good after this meeting. It seemed like it was the first time I had had I time first the was it like seemed It meeting. this after good felt I Is local metastases better than distant? Yes, but likelihood of it it of likelihood but Yes, distant? than better metastases local Is There has only been one study of vaginal cancer, and it was only only was it and cancer, vaginal of study one been only has There shows the following (essentially involvement of the pelvic bones but of the pelvic bones but shows the following (essentially involvement words, other [in involvement) disease widespread of evidence other no I would recommend pamidro- metastases remains localized to pelvis]. back him emailed I discussed.” we as weeks 6 to 3 every infusion nate to with a few questions. His reply: “The changes in the hips are related arthritis according to the bone scan. The other findings are related to me know if with the prior PET scan. Please let in line and are the cancer you would like to proceed with the pamidronate infusions.” Cancer and arthritis. Grand. My pelvis is quite the senior citizen. - regimens for at least several months, but alas … I have a lot of ques don’t I crucial, really is it unless that thinking am I this. about tions want to do it. But we’ll see. I need more info. evaluate my primary tumor with a physical exam? Yes. I will make an I will make an tumor with a physical exam? Yes. evaluate my primary K. Dr with appointment Bone scan an injection of a radioactive A visit to Nuclear Medicine department, blog her write could Kathy so cafe wifi a and Walgreen’s to trip a tracer, down very still and watch a sort of post. Then back to the hospital to lie slowly very move it of middle the in crosshair a with plate white square still on a scanning table is, gener- from my face to my feet. Having to lie ally speaking, rather relaxing. gotten any info about my response to treatment, and about the future. future. the about and treatment, to response my about info any gotten happens.” If Let’s see what don’t know. “I all been it had then Before scan CT a get will I go. to good I’m clear, is May/June in scan PET the months. If the scan is every six three months for say a year, then every weeks for 18 weeks. not clear, chemotherapy every three planning my life and so on, with a social worker. planning my life and so on, with a social turning into distant mets is very high. Is cancer in the bone more life- more bone the in cancer Is high. very is mets distant into turning cancer. one as all it at look to best No, threatening? second thought I think it’s probably better not to have these numbers! these numbers! think it’s probably better not to have second thought I individuals. to relevant not are statistics of kinds these says, A Dr As survival data for I have said before, there is no any case, as I’m sure know if this is Six months from now I should vaginal adenocarcinoma. milestone. the PET scan will also be a major an aggressive cancer; with technical information. At least, all my oncologists do … But by the by the But do … oncologists my all least, At information. technical with with up we ended what questions, asked many I had Kathy and time was a best case scenario on my CT scan, which is that they didn’t find since is unchanged bone sclerosis (scarring) new. The pelvic anything very well to the treatment. I have responded In other words, November. was a that study, there valid I think). In (not statistically 20 people than cancer living more advanced stage of people with 50% chance five years. Women with advanced breast cancer have even worse odds, based on better statistics, only one third For myself, I think it’s good to waste some time. If this sounds really The creative mind does not necessarily find expression in ‘works of The creative mind is above all an aware mind. And being aware, or The creative mind is characterized by ceaseless interesting. productivity. I This think some is of us have a human beings if sense we are productive. But this is a different thing. This is that we are only worthy productivity that has absolutely nothing to prove. If we feel we always where is the kindness in that? need to prove ourselves, hard, probably all the better as something to try. Sangharakshita says, are yourself You useful. being by existence your justify to have don’t “You the justification for yourexistence.” What compels the creative mind is and simple but anything, avoiding or proving or existence, justifying not pure and free spontaneous energy. art’. You might think, Well what is it doing then? It can manifest itself in all kinds of areas of our lives. But a general point I want to make is don’t We life. to attitude playful a bringing It’s playing. is creativity that need to be martyrs. overflowing Bodhisattvas spontaneous a joyfully as this play regard can “One at says, Sangharakshita everything they do. the immediate situation.” of [their] inner realization, which transcends rather, being Awareness itself, the creative mind is also intensely and radiantly alive. The creative mind 3 February 2010 from a talk on creativity,

48 Crap, I’ve got cancer April 2012 The power of ideas

51 The power of ideas And as long as I am reveling in self-disclosure, I may as well add add well as may I self-disclosure, in reveling am I as long as And the last two weeks of April. In I may stay up at the SFBC land for April 3: Cancer helps me do nothing April 3: Cancer helps don’t. I fully plan I don’t have to get out of bed, I It seems that when an is like don’t. My bed I but right thing, the is it and know that to, do, to things lots of I have … that keeps me from traveling anti-siren now. You wouldn’t think that just nothing that has to be done right this But it. with issues have would morning all bed in lying someone mean this does Oh, like, thoughts edges the around noticed I morning the about thought I And caffeine? without live I can How depressed? I’m a find or walk retreat, solitary out figure Meditate, do. to ought I things thing that or this figure one, that or appointment this make class, yoga be doing something, unless it’s out. Fact is, I always feel like I should Sunday morning. protestant the of henchmen the that fear, of tinge a also is there that not I’m If coffee. good of cup a me serve and down swoop will ethic work I worry. to not decided I unified? bed, in lie just not why up, get to going around that example, For … stuff about thinking noon, until bed in lay involving pain. four days ago, taking a shit stopped I may end up in an eco hut on the spite of pondering Mexico and Hawaii, where- have the I don’t know if I northern coast of Oregon after that. Plus, I have a car. I am not in withal to set up anything more elaborate. no bucket list. I move slower than a hurry. I have no ambition. I have about worry people have to is it strange how about thought I to. used I friends distant influencing strange It’s you. bother to want not and you the you of me one’s disease. The me and and acquaintances by virtue of having cancer is not to be sniffed at. There’s a lot more to this, but alas, from words few a with you leave I bed. of out get to ready somehow am I Yoda: Try not. Or do not. There is no try. April 4: Busy (for me) day I’m sorry if reading my last post made you wish you could sleep in, or made you think I am lazier than you already thought I was. It’s April 1: Medicine Buddha April 1: Medicine is which London, West in “TKY” from mail the in arrived tube A 2001. I think she I was ordained with in Tuscany in Tarakarunya, who is very beautiful. it! There was no note with it. It must have painted Valencia, so I will framed by the super nice guy on Kathy is getting it April 12. Can’t wait! get it back around April 1: 1: April the Medicine of painting Tarakarunya’s San Francisco Notice Buddha. background! in the He said doctors have different styles; some rely totally on scans etc., some rely totally on scans etc., He said doctors have different styles; was it once that deep so was tumor the that concerned been had He our minds around this news. We Padmatara and I couldn’t quite get Today I did four things. Went for another consult with Misha and and Misha with consult another for Went things. four did I Today with The consult Such nice people. group was great. The support April 7: In or out of the world of cancer? I’m a little concerned that I am still so tired. How long will it last? Or I as much as sleep can I that just guy, next the than tired more no I am want to? How much energy am I supposed to have? I seem to have less but he relies on how it feels. He said I could get the PET scan, wouldn’t wouldn’t scan, PET the get could I said He feels. it how on relies he but be revealed from it, and it would hurt, but no more information would Bless his cotton socks! He has felt not affect future treatment plans. treated had he week this said He tumors. of thousands treated and … cancer in eye, prostate, and ovaries things back together. Surgery might gone I might need surgery to patch from scarring so, or year next the For future. the in necessary be still why scarring continues for so long radiation is a risk. (I have no idea urethra could become blocked by after treatment.) For example, my stretched open again. Also, scar tissue and would need to be surgically so that sex would not be possible, the vag could shut down as it were, possibility, reduce this help to do I can things are There or just painful. the urethra as far as I know. but nothing much to be done about went for veggie burgers and pinot grigio at the Beach Chalet. The water incredibly cold wind out there today. We watched was super choppy, para sailers zooming by. April 5: ¡Ay Caramba! tissue) in Santa painful exam (because of scar Today I had a somewhat radiotherapy. The the doctor who did all the internal Clara with Dr L, first thing he said was: “Beautiful, good.” Because my tumor is gone. doubt that it has a large tumor, and he has no He said that it was means in terms of I don’t know exactly what this completely vanished. the future but it would seem to be another, more significant best case scenario. When I first met him in January he told me that he was sure boldest state- away the and which was far tumor, rid of the get he could or since. I thought, “We’ll see.” ment any doctor had made at that time, (Hope and fear must be managed!) true that I have a great love of sleep, cancer or no cancer. (Apparently (Apparently cancer. no or cancer of sleep, love a great have I that true a sleepers’ gene has been identified. Around 50% of my family has it, it.) have all of them case in which at my house, they’re unless for a chatted with Tong for half an hour, with a social worker Elisa, met group at UCSF, support the weekly went to the “Sugar Bowl”, while at Pooped! at sangha night. and meditated Misha was also great. She did of couple a For Ack. OK. is Stevia sugar. little very or no especially emphasize anti-inflammatory foods, and was mostly anything with added sugar in it, months I didn’t eat not tempted by such things. This may be difficult at this point, but I’ll try.

52 Crap, I’ve got cancer 53 The power of ideas I crawled into bed and watched the documentary Aileen: Life and documentary Aileen: Life and I crawled into bed and watched the A few months ago I left my world and entered the world of cancer. of world the entered and world my left I ago months few A I want is a do you want cancer or not? What You might say, wow, April 9: Info Just had a chat with Dr S. He said there was some concern about my lungs from what showed up on the CT scan (also could be nothing). So progres- disease is there If May. in scan PET the do to want still they sion, there will likely be 18 weeks of chemo. If there is nothing, no chemo, and things will just need monitoring. Death of a Serial Killer. It was haunting and profoundly sad. I have had and profoundly sad. I have had of a Serial Killer. It was haunting Death but somehow I very deeply reso- very little physical violence in my life, extreme violence, especially against nate with the pain of situations of both of which are part of women, and the sad stories of the perpetrators, of a Cathar (early Christian her story. I remember reading an account that silly feel I time. long a for cried I alive. burned being woman sect) you that hope I day. all writing bed in stay to wanting about wrote I but only insofar as the present realize that what I write here is true, moment lasts. April 8: A visit, a tower of song and a serial killer April 8: A visit, a tower of song and a After York. New from weekend the for here is Savanna Delightful around Valencia Street, we went nice breakfast at Chloe’s and ambling at the Center. It felt like church to the Conspiracy of Beards concert sense. Or anyway, my kind singing in the most genuinely uplifting the voices brought out wonderful of church. The power and beauty of details in the poetry of Leonard Cohen. than other people. I think the docs did tell me that the fatigue could last last could fatigue the me that tell did docs the think I people. other than Hill to Bernal walk up for a I went afternoon In the few months. for a the up bar a Palm, Lone the at folks some met then Karunadakini, with home I beer. Walking I had a ginger celebratory libations. street, for refrained. cream but somehow stop and buy ice wanted to Now maybe I am or whether I don’t know out of that world. I’m coming but I don’t sclerosis, secondary cancer/bone I still have not. I’m assuming to ways I don’t want are. But in some implications of this what the know and my life, space in a lot of having keep to I want world. leave cancer am tired, I when and loving, and to be able to rest for things to be simple writing. lying in bed absorbed in my thoughts, and to spend hours sane, spacious, and reflective life. I dread my awareness thinning out for hungering starts then and things, many so in take to has it because group yesterday I don’t want the pain. In the support them … Of course, with cancer a website that seems to be just people someone suggested though even that there saw I lot. a learning am I issues. their discussing people get pelvic adenocarcinoma, many, many few people have vaginal identical treat- with cervical cancer gets a virtually radiation. Anyone end cancer beat who people the of some that saw I got. I what to ment because they lost or wrecked a up disabled from the treatment, either in constant pain. body part, and/or because they are Misha has told me that studies show more and more of a link show more and more of a link Misha has told me that studies I’m also eating a lot less meat (by which I mean, flesh of any kind), I realized something about Dr S. I had asked him to be direct. Based Based him to be direct. Dr S. I had asked something about I realized illness seems individuals have responded to my Anyway. The way April 16: Broken, or, the power of ideas I am on the first day of my solitary retreat at the SFBC land in Lake County. Most of this I wrote in my tent last night: The Power of Ideas sounds like a corporate marketing slogan. But the thing is, ideas are powerful. And slogans are often true. By an idea, I mean a thought. A thought like one I had today, my body is broken. By which I understood between sugar and cancer growth, so I thought I would go back to my my to back go would I thought I so growth, cancer and sugar between is simply because of the amount of zero sugar policy, but haven’t. This the jam I have has sugar. discipline and effort it takes. For example, water or a drink with sugar in it When I went to the bar, it was either than I would like to. … I am certainly eating a lot less sugar and discipline much how notice I frequent. less are cravings the as example, when you’re at an Italian effort it takes to be a vegetarian, for protein. little with starchy all are choices vegetarian the and restaurant tried to avoid such restaurants, or I suppose in the past I would have such an issue. Still, I’m around 95% maybe I didn’t feel like protein was am still to some degree prioritizing vegetarian at this point. I guess I I caffeine! craving I’m And of the animals. over the lives health my previous routine. I’m bringing no suppose I am wanting to go back to my sugar on my solitary retreat ... Feeling better brings new challenges ... April 12: Food issues group, that to going like I yesterday. group support UCSF the to went I getting rattled by people giving in spite of being really sensitive, and it’s when even of, full be to seems world the which advice, unsolicited very high-and-low still, also some- not directed at me. Energy-wise I am times unable to sleep. April 10: I didn’t think anyone liked me so much so me liked anyone think didn’t I 10: April to oblivious I was Or sweet? not I was Or before? sweet not people Were crap. gave a of no one, or most no one, like before It seemed affection? presumably. bucket the I kick me before talk to to want people Now for a cancer story going it. I should keep this me wrong, I like Don’t get time. looooong can be. I sure that he I’m not really of our conversations, on a couple but those from studies, conveying results can be direct about mean, he I meant by being direct. things aren’t what words, if they past experience of illness. In other to correlate to their cancer, etc., or or had a close friend with breast nursed an ill husband, sort of ‘here’ of illness themselves, then they’re dealt with some kind geographically people are not (even if they’re not in a way that other of illness, pain if you have had little experience here!) In other words, very is who someone with resonate particularly don’t you disability, or ill. This is not a complaint at all. (It’s exactly how I was around months ago!) five

54 Crap, I’ve got cancer 55 The power of ideas For example, I had a hot flash tonight. I have never had a hot flash and I think I am done One morning, say, I feel better, energetic, arthritis” and found more online I just googled “radiation side effects be a sexual word. It used to be a Vagina. Vagina. Vagina. It used to April 30: Trying to drink whiskey from a bottle of wine songs John Elton all are (or song John Elton old an from line a is This I weeks two many times during the through my head that went old?) spent alone at the SFBC Sugar Shack in Northern California. I wrote a few draft blog posts, none of which survived, because I felt they were too whiney, they were trying to drink from the wrong kind of bottle. myself to mean hurt. Very deeply hurt from the machine- and chemical- and machine- the from hurt deeply Very hurt. to mean myself - discov is re-thinking, thinking Part of it underwent. abuse generated you know even didn’t you that before, thinking were you what ering temporary, with temporary my treatment as I thought of were thinking. or so. away after a month effects would go O told me the side effects. Dr side effects abound. down the line, and it is, two months But here my Soreness in my gut. in deep pain stabbing occasional before. The I don’t by the radiation? … was it caused knees. Arthritis hips and urination. More about that as a possibility. Painful remember hearing I sleep 10 to 12 control. Some of my teeth are sore. gassy, less bowel inarticu- alone, be to need intense occasionally An night. per hours A dream a deer in the headlights. Confusion. late, can’t quite explain, around, home to get home, and everything moving about driving, trying Finding being away and the route more confusing. is getting further and trust and know I people even person, other one than more around after I eat effects from food. Like sometimes love, stressful. Strange with cereal breakfast like eat, people that foods normal foods, certain any sugar – my not normal because it doesn’t have wheat in it – but it’s the itching First anxious. me makes which while, for a itches vagina thought.) a also is (This again. cancer have you it know you before and Or sometimes my face will itch. to be non-linear. The next day I with recovery. But the change seems around March 22, all the pain and feel broken, weary. I thought that on over. And that thought keeps trouble would be over, or close to being some ways my body is irreparably getting friction. It seems that in In any case, my body feels different damaged ... or is that just an idea? aren’t They ago. months of couple a did it than – differently behaves – Grief coming from my body today, differences anyone would wish for. some of it out. Meditation feels crying and crying. It’s a relief to let emotionally healing. is a quote from a man who had forums from cancer survivors. Here “The collateral damage anal cancer and got 26 radiation treatments: has been enormous. It’s been over five years now since I had this done around as the years pass … I was and it is only getting harder to move radiation “aged” my body exponen- only 43 when this happened – the to going was body my badly how me tell anyone didn’t why Geez, tially.” yoga! be messed up? I have to start doing private word. Now it’s like Leonard Cohen’s broken hallelujah. New York people that recommends Times My tumor, the primary and biggest cancer, is gone. I was told by by told was I gone. is cancer, biggest and primary the tumor, My the of section health The re-entering the consultation On another note, I just sent my email the doctors and expected, and I suspect others expected, that my body body that my others expected, I suspect and expected, and the doctors suffering, be I seem to Yet was before. to how it go back roughly would spent the treatment. I than I was during or another, more in one way it is now, my body as getting to know among other things, two weeks, dreams many had is now. I it as body my know to get to wanting not and take to trying staircase, a ascend to trying pack, to trying frustration, of someone doorbells, and I also heard … many efforts thwarted. a shower (in my smelled incense in the house, and at the door, while knocking no one there! car) when there was Dawn next year, the prospect process to become a preceptor and ordain of which makes me very happy. with arthritis avoid staying in one position for too long. Which is a big Which is a big staying in one position for too long. with arthritis avoid I have mostly is, of course ... at least the kind part of what meditation going to take a lot years. Dealing with this change is been doing for 20 makes me is what it and a lot of creativity. Of them all of getting used to aged ten years. that in four months, my body has the saddest. I do feel helped my pelvic every day on retreat, and this I’ve been doing yoga the effects of I will do what I can to counteract bones feel much better. a year, but for the who knows how things will be in the treatment, and on, deeply depressing. moment it is, off and

56 Crap, I’ve got cancer 57 The power of ideas But in actual experience, in the business we all have of being alive – or or – alive being of have all we business the in experience, actual in But task satisfying somehow but Herculean the about is practice Spiritual The teachings, among other things, tell us to open up to the momen- The minute sense. you read makes about just mindfulness, it or some that other gut super-practical your in know you practice, Buddhist of aspect It may even seem that it explains your life. Buddhism is just and sensible accessible, especially modern expositions on it. You don’t have “suspend disbelief” to or perform mental contortions to be able to relate to expe- human of recesses dark the into down dug had someone if as It’s it. to want fully don’t but know of kind we things the all including – rience about it. It’s like turning a light on. know – and wrote it down, or spoke Buddhism of teachings the day, every of moment each in – be to wanting of course the in that so counter-intuitive, viscerally, even relentlessly, are over and over things same the of many discover may we practice of years again. We may learn something, we may think we’re ‘done’ with it, but then we carry on with the task of incorporating it at successively deeper and deeper levels. attempting In deed. into word and thought of realities the translating of it we are confronting the ongoingly challenging task of expressing what we already know through our way of living in each moment. Our prac- tice functions not to teach us new things ‘from the outside’, but simply to remind us what we want to be doing. It reminds us to apply what we It also somehow helps us do it. know to countless knee-jerk responses. tary and the abiding trials of everyday life, of every-moment life. our gut But doesn’t want us to do this, or at least our gut often doesn’t act enthused. We have to learn the thing over and over again. We have to have a thousand of the same Ah-ha moments. Maybe not a thousand. them. Maybe only ten. But I enjoy having Buddhism vs. the Visceral Responses Buddhism vs. the 27 August 2008 Song 10 February 2009 of being lost I marked the moments a longing and being lost was a song of rind left on my lips traces sounds as one hears train but no train I marked the moments of the song by being lost my compass as if, before entering a lake I took the clothes off my clothes marked the moments on trees I followed until I couldn’t see not even rabbits, not even loss, there was no trail, only longing and a song I marked the moments being lost was my song

58 Crap, I’ve got cancer May 2012 A kind of trust May 13: A recent photograph by me of a 1970s drawing by me of a 1960s photograph of me with my cat in the dryer 61 A kind of trust She takes care of a 91-year-old bed-bound Irish woman called Betty. Irish woman called Betty. She takes care of a 91-year-old bed-bound always is feel you who God a in faith complete have you if guess I Of course, meeting someone who has been unable to get out of bed It was nice to be around people who have/have had cancer. Most cancer. Most around people who have/have had It was nice to be She has a delicate face and manner. The most striking thing though The most striking thing though She has a delicate face and manner. about people who are suffering was how cheerful she was. She thinks and most of her time is spare, she and prays for them in her spare time, a feeling of peace and kindness and can’t really do much else. I got such lightness from her. to be pissed off about. Perhaps doing the right thing, there is nothing that principle basic the in trust complete be would version Buddhist the way a in which conditions, myriad on contingent is happens whatever similar but decisions, the all making being great a of opposite the is of all situations becomes possible. in that a kind of trust in the reality a deep sense of a lack of control, a Perhaps both attitudes can produce and conducive to happiness. letting go that is incredibly freeing, for 10 years puts one’s own suffering into perspective. You might say, well, she’s 91 years old, it makes sense that she’s very ill. A situation - might appear to be more or less tragic depending on one’s circum ever one suffering is suffering. Does the day, end of at the but stances, think that suffering is supposed to happen, that it’s the right time? There’s a degree of tragedy, at least for the person who’s got it going on. I’ve been feeling sorry for myself to some degree, and meeting Betty put that into perspective. May 4: Compassion way home from a solitary retreat, A couple of nights ago, making my many years of apartment after – my friend Lisa who to visit I stopped – now lives in a house in Novato, living beneath a freeway in Oakland at the north end of Marin county. of them are either disabled by/in pain from the treatment they had had they treatment the from pain by/in disabled either are them of over sometimes disease, the battling actively still are they or ago, years were they but group tight-knit pretty a like seemed They years. many and talking while I felt understood, and listening also very friendly. doodling is excellent. May 2: Doodles for recovery May 2: Doodles for part It’s cancer. with people for today thing art three-hour a to went I got it going on for Recovery program at UCSF. They of the larger Art There’s dance, to a therapeutic yoga class yesterday. over there. I went and open to the (cancer patient) public. pilates. It’s all free I left San Francisco motivated to be kind, to see behind the masks. masks. the behind see to kind, be to motivated Francisco San left I And then the internal conflict about applying for (social SSDI … for something that is not And seeing how I use food for comfort Especially lately, feeling And always, I should meditate more. Conflict is painful, and yet trying to get rid of conflict is to add The kindness that I cultivate for others must also apply to my own I would like to write more, but I must leave now for a week’s medita- Through Love all pain will turn to medicine. Through Love all Rumi She seemed genuinely happy and light-hearted, without denying denying without light-hearted, and happy genuinely seemed She to be more often, of other’s suffering me want to think Betty made May 24: Real things remind me of fake things … … like the clicky bugs at Spirit Rock that sound like a quickly shuffled George Orwell: “He wears a mask, and his face grows to fit it.” People they want something. We want do stuff, they can’t help themselves, loosen, tighten, half the time not something, we grasp, harden, soften, There’s confusion behind a lot of knowing why, what’s underneath. distracted deeply so be to not time a for try to resolved I So do. we what is compassion that see and mask the beyond look To appearances. by the only sensible response. security) which I finally did yesterday. Do I really want to? Am I sick if they don’t? Why didn’t I apply enough? Will they give it to me? What be, at this point, either very well, earlier? Because I thought I would scenarios, nor did they occur to me, or very sick. I didn’t consider other even once. Yes or no. Yes or no. technically what it is for. The conflict is some sense of, it shouldn’t –I shouldn’t – be this way. practice. Shoulda coulda woulda. disconnected from my formal sitting to be kind makes not being kind another layer of pain. In a way, trying more painful. And that’s OK too. failures, my own confusion, my own irritation, my own losing of my way. tion retreat up in Marin county. This post is about conflict. The conflict I felt when my mom wantedto I didn’t want, but she had just given me, which take back the stereo at nothing, at air, she would get rid of it. Irritation had accepted so that didn’t use it she’d air acts. She assured me if she at air acting the way not remember. it to me later. I assured her she would remember to give a windmill? Why start a sword fight with Why? Why be so linear? May 13: The mask what her difficulties were. She said, “I miss being able to do things.” She She things.” do to able being miss “I said, She were. difficulties her what care for the grateful She was her life. woman in busy been a very had And it. have not do who others many so of aware and getting, was she it accepted but age, her friends living no virtually to have she was sad engagement. striking grace and all with a kinder.

62 Crap, I’ve got cancer 63 A kind of trust Something’s always pointing to something else, especially words, words, else, especially to something always pointing Something’s The Rock. Spirit at retreat recent my little about say a to want I Rock is very similar to what The type of practice they do at Spirit One other thing about the retreat. The first day or two I felt this Dr S is leaving town again. So frustrating. I’m sure he has a good deck of cards. The sound of cawing crows outside the shrine room evoked evoked room shrine the outside crows of cawing sound The cards. of deck altitude to due partly ago, Years Birds. Angry Google’s of image an mountains. me of Disneyland reminded in Nepal a mountain sickness, at Cal, by a famous poet of plagiarism that, I was accused Before even as a cartoon character. of Brutus primarily I thought partly because Anyway. the most must be one of somewhere. Cancer leading you they’re always Where Cancer. it: Say language. English the in words fear-inducing another The word changes the body. Chemotherapy, does it take you? with longer I got ended up being far more painful, doozy. The radiation those words. but I don’t think radiation is one of term side effects, than I thought I was able to sit in meditation more main thing is that to stretch out an absolute joy. I did a lot of yoga I would, which was deal of peace so tight. One day I even felt a great my hips which are and doing yoga, the next day it all hurt (sitting in my body. But then night, my friend with my sacrum throbbing). Last lying in bed at night against advised and poses yoga simple some refine me helped Stephanie but which hurts down twist, which I used to love others (like the lying India, near Iyengar’s school, for now). (Stephanie has lived in Pune, ther- world training teachers of many years. She travels all over the something a tiny bit different from apeutic yoga.) She would suggest suddenly feel so amazingly right. what I was doing, and my body would happy. In general I have been in After a couple of minutes, I felt so is nice, since transitioning off very good spirits since the retreat, which for me. retreat often seems to be very difficult Community. Buddhist (“Three Jewels”) Triratna the to in used am I in that we do rituals and Ours it must be said is more ‘religious’ We also, I think, emphasize get funny names when we’re ordained. me) to seems (it whereas more, creativity and community kindness, their Equal wisdom. I loved meditation/ mindfulness/ they’re all about grateful to them. My last ‘retreat Opportunity shrine. In any case I am it retreat; the of most for paid center the for working from allowance’ moving retreats, on get to way a out figure to need I that me on dawned forward … day next The it. with touch of out somehow were I if as but sadness, taking a small amount (10 mg) of I stopped taking prozac. (I’ve been fluoxetine for about a year primarilyas a perimenopausal mood- stabi lizer. But the treatment has abruptly removed the peri … ) One is not supposed to just stop it, but I figured I am taking such a low dose it would be fine. And it was. I felt stopped taking the masses of supplements for one day, which helped my more in touch with myself. I also digestion. After that I cut down on a few things. My condition continues to improve, albeit very, very slowly. reason, but he can’t function well as my main/coordinating doctor if he’s The exam wasn’t as painful as I thought it might be. He said there is said there He might be. it I thought as painful as exam wasn’t The Over the last few years I considered, and eventually lost interest lost interest years I considered, and eventually Over the last few unac- simply I’m sexy. not Just not. am I bitter? sound I Perhaps a freckle-sized bit of scar tissue from the radiation which will probably a freckle-sized bit of scar tissue from the radiation which never go away. Or it could be dead cells that have yet to free themselves. and uses great communicator really a is He questions. of lot asked a We May 29: Exam, talk + brief maniacal planning May 29: Exam, talk + brief maniacal an had I today. center health the to went times, old like just I, and Julie gynecological oncologist (an impres- exam and chat with Dr K, who is a because that suggested surgeon. Dr O had a and sive ten syllables) to good be might it doctors, of posse my in gynecologist only the is he get a follow-up exam with him. He was the first oncologist we met, in January I think. in, the idea of becoming an anagarika (shorthand: a nun), at least in nun), at least in an anagarika (shorthand: a in, the idea of becoming angle … My but now I’m coming at it from a different doing so formally, a wad of symp- to feel sexy. More often it seems like body does not tend reddish freckles, yesterday, this sort of swathe of toms. For example, looks like a heat on both my shins. It almost a lot of them, appeared chronic either of degree some have I And aches. back lower My rash. and reduce laziness. In order to be less unhappy, fatigue or inveterate eating/ meditating, time of deal great a spend I discomfort, physical stuff with both doctors and alter- cooking healthy food, doing medical supplements and medicinal tea, native medicine, stretching, taking But you can’t say these things writing, and eventually, I hope, working. Leo Buddhist old 48-year income Low you? can or … ad personals a in menopause’. Otherwise, hopefully just learned a new phrase, ‘medical hot and cold like a broken fridge recovering from vaginal cancer, going to Care all. it about blogging and unemployed, be to soon tropics, the in swap suppositories? being in pain. I am not in a lot of customed to not being … hearty, and try I it? to used get I Will work. more lot a It’s time. the all not and pain, things I wrote before, the what to look back over I need not to complain. sister Kathy said last night that I wanted to remember about life. My it seemed from this blog that I am not angry or fighting the fact thatI that when she saw me. Geez, talk have cancer, and that it seemed like I’m not doing that. As the Buddha about adding insult to injury, at least into the wind. said, like throwing a handful of dust May 27: Worry and sex (not as interesting as you might think) as you might as interesting Worry and sex (not May 27: it felt was … well, really the recent retreat thought I had on Another live I thought, I cannot felt more like a vow. than a thought, it stronger cancer be, afraid of getting long that may of my life, however for the rest committed feel do I time, same the At that. do not will simply I again. food, getting of my body, eating more nutritious to taking better care consistently. regular exercise more away so much. So no meeting after the PET scan, but he has a backup, backup, a he has but scan, PET the after meeting no So much. so away be hopefully who I will he left!) last time sub as the same (not even Dr R results.) get the days to wait ten is to (Alternative to talk to. able

64 Crap, I’ve got cancer 65 A kind of trust Strangely, the most helpful thing he said – in response to my asking to my asking helpful thing he said – in response Strangely, the most ago, in ways that may or I feel a lot older than I did a few months the pharmacy trying to get the I had a very frustrating time at I’ve got possible plans bursting out of my sides, but will not reveal a lot of metaphors, which I like. For example, he said the distant disease disease distant the said he example, For I like. which metaphors, of a lot might ones other dandelions, the pick If you dandelions. is like thing to my question response In later. until don’t know you elsewhere, appear cancer, for risk high considered be ‘always’ I will not or about whether pass, any yet! As years and I don’t have is all based on history, he said it it if him I asked diminishes. risk perceived the clear, remain scans my if S is Dr the PET scan, since questions after all right to ask him would be on Dr S but that from now be happy to, He said he would away so often. been have that “he would and anyone else away any more than won’t be plot thickens … hadn’t had to leave last time”. The much happier if he patients report symptoms – was that many of his about my current years 20 or 15 say would I treatment. cancer after older years 10 feeling keep thinking all feel better because otherwise I … But it made me to feel so much going to end, that I’m not supposed these symptoms are stiff and creaking I get out of bed in the morning, older, especially when like the floorboards of an old house. When suddenly I need to the main things not make it to safety …Those are shit and I fear I will takea per night than I sleeping, say, two hours more I suppose, other than of out fricking are flashes hot the and yeah, …Oh ago. months few a did age, but certain of a women thing that happens to a it’s know control. I right now! I’m sorry to be a whiner. I feel that that is not the age I am at much as the idea that I have aged The idea of dying didn’t bother me as … 20 years (in some ways) in three months the cancer treatment. Of course may not have ever happened without out finding before dead be presumably I’d treatment cancer the without in my hips ‘naturally’ ... What Dr whether I was going to get arthritis helped me accept this situation, K said about his patients feeling older the away, all goes it if (Then it. not accepting feels better than that and of people have told me they didn’t better!) On a related note, a couple about my sister noticing that I understand the part in my last post it a criticism? No, it was a compli- didn’t seem to have any anger. Was by. I thought that was obvious! ment, something she was impressed I’m (tomorrow). scan PET my of morning the drink will I which barium, for menopausal symptoms. I have also going to start taking Estradiol take it for that long and see how it three months’ worth, I’m going to cancer is not estrogen sensitive so goes. Misha suggested it. (My type of test (Misha also suggested I get it isn’t risky.) I also tried to get a blood to have so fast, to supposed was I know didn’t but D) Vitamin for tested do it another time. which scan, tomorrow’s of results the out found I’ve after until them will show 1) whether or not the known cancer in the bones has shrunk, stayed the same, or grown, and 2) whether or not there is new cancer anywhere in my body. I will know by around 5pm this Friday. I have is everything and gone, be will cancer the that while last the for felt fine. When I was sitting for half an hour letting the stuff circulate, all all the stuff circulate, an hour letting sitting for half When I was at the same PET scans and CT scans are done Anyway, now that lot of faith in pharmaceuticals, These days, people seem to have a PET/CT scan machine in San My health plan does not have a bit a waning is scan PET the of results positive about confidence My have kindly reassured me about P.S. Since my last post, some folks May 31: An hour in a shaking trailer a shaking in hour An 31: May - dots repre on it. The dots of bright with a bunch a picture scan is A PET sent high metabolic activity, which means cells that are wolfing down because show up clearly tract will Also the digestive glucose (sugar). minutes, 25 about takes itself scan The drink. banana barium the of circulate. you up with to tracer they shoot the radioactive after allowing get over relaxing after you actually pretty the donut tube is Being in about moving. worrying EXIT an and function, unknown of machine a was at look to was there that there was an front of me. I thought it strange sign on the door in I remembered no larger than a closet. Probably a law? exit sign in a room OUT, which is a underground – they say WAY the signs in the London must come from saying it in English, whereas EXIT much older way of to think about. like, and no doubt is, a strange thing Latin. It may seem English) words. am interested in Anglo-Saxon (Old For some reason I of map. One gets of bright dots comes with a kind time, the collection rather were scans PET the development this before that impression the hard to interpret. Also according to common before CT scans. It was exploratory surgery was much more the self-identified technologist, going on. the only way they could see what was for but … delivering of capable be might chemicals the what beyond I am intensely grateful. At some certain aspects of modern medicine, medical response to my condition point in the not too distant past, the with along tumor, the remove surgically to been have would probably of my pelvis. Whatever health some of the rather important contents they do not involve carrying around problems I have now, at this point pee and poo. Allah be praised! trailer. a to outside go to have you and out, contracted it’s Francisco; those San Francisco wind corridors, From inside it seems to be in one of and when you stepped outside onto you could hear the wind howling, down, you could feel the blast of an the little platform that lowers you off my list of places I might like to arctic gale. I’m going to cross that end up working! gut and back, can I really know that ... The aches and pains in my lower one more day to find out, I hope ... the cause of them is not cancer? Ah, my own sexiness. In that post (about not being sexy), I was writing not about how I think I look or am being perceived, but about how I feel on the inside …

66 Crap, I’ve got cancer 67 A kind of trust Song 2 (my animals) 18 March 2009 we are each a zoo perimeter of cages full of moving, fur these days my animals, edgy, restless, realize where they are rubbing against the absence of bars they resound still looks like the same zoo charging the same prices, the same morning, still looks like visitors, are staying on the pathways mostly trying to reach through, leaving behind more or less trash the morning looks the same but here surrounded by blue night without audience my animals sing Deep Survival which One of the points it made was that there aren’t any accidents. Systems Systems accidents. any aren’t there that was made it points the of One One thing that isn’t an accident is sickness. Sickness is an intrinsic his of one that teacher her told she where story a had Chodron Pema and do, can you what Doing Engaging. results. to attached being Not I read a fascinating book a few months ago called aren’t perfect – they are guaranteed to break down. The people who can cope with changes in plans and actively work with them lives. daily our to are well as just applies principle this think I survive. who the ones much of which is self-induced. For example, we can be killed by stress, part of the human form. No one on earth has ever escaped it. age. to not expect We Yet, sick. get to not expect we that our such are expectations Expectations are mostly unconscious. students had relapsed and that she was really disappointed in him. He told her that her disappointment was a form of what he needed aggression, was kindness, not her judgments about him. Relapse and is that things on back go all we – obvious pretty be should It system. the of part Why be surprised? we say we’re going to do all the time. letting it go. Expectations Gay Buddhist patience given to the San Francisco from a talk about 2008 Fellowship, November studied why, in certain extreme situations, some people die and psychological reasons. people live. Mostly some

68 Crap, I’ve got cancer June 2012 An adventure in how things are June 7: Walking around SF with my old pal Jeff. A lady walking by wanted to take our picture in front of this heart, even though my hair looked like this. 71 An adventure in how things are A few days ago I asked Dr K if he would be willing to do some backup some do to willing be would he if K Dr asked I ago days few A it that said He pelvis. my in cancer the about ask eventually did I Later today, I get the news that will have such a huge impact on my my on impact huge a such have will that news the get I today, Later for Dr S, since Dr S has been away so much and my post-PET phonefor Dr S, since Dr S has been away never met. So about an hour beforeappointment was with someone I had theabout talk me to Dr K called appointment today, the scheduled phone he said was, It is not good news. results of the PET scan. The first thing the of rid get could he saying L Dr remember I gone. completely all is tumor, but that it was the “rest of it” he was worried about. There are 8-10 small metastatic tumors in my lungs. These were spotted on the CT scan two months ago, but were too small to evaluate. They have called isn’t this way, the By scan. PET the up lit apparently and grown, lung cancer, or even secondary lung cancer. It’s “primary vaginal cancer 10 in back gets S Dr until know won’t I lungs”. the in metastases with days what this means exactly, but chemotherapy for several months seems certain. Before ringing off I told Dr K that I had repressed hope during treatment, but this time I had had hope … but I suppose that June 2: “Sell your cleverness and buy bewilderment” (Rumi) 2: June to plans were tentative. I wanted At least this time I tried to act like my Spanish course before the Order go to Mexico and do a 6-week intensive Based Stress Reduction (MBSR) convention. A summer Mindfulness on Love and Death … course. Teach a series at sangha night life. In a way, I have gotten used to waiting, and have been mostly so waiting, and have been mostly so life. In a way, I have gotten used to optimistic and happy … June 1: Brazil Center Zen at lives who Kee Lisa visited I happy. so feeling been I’ve caramelized of kind some mention to (Not there. lunch had and now I sat in our Center Coffee in Hayes Valley. Mmmm.) macaroon at Ritual chat- and outside stuff selling $67 made boxes, veg their people giving to introduction drop-in the taught then by, wandering people with ting personal trainers Ended up talking to two Brazilian meditation class. talking since the The guy, who was doing all the for an hour afterwards. light”. He had a any English, said that I “transmit woman didn’t speak limitations, vocabulary with do to possibly speaking, of way poetic very had a lot of questions. I loved them. but some stuff came through. They this had I’ve Brazil. visiting about thinking am I now surprisingly, Not You’re trying to communicate with kind of experience several times. you then but basics, severe to down it keep to have you and someone, feel … love. : I had put an Estradiol patch on my shin that morning. (Misha had shin that morning. (Misha had I had put an Estradiol patch on my They admitted me immediately to my first emergency roomthat The pain was really rather amazing. I told myself that once I wasn’t June 5: Emergency Room June 5: Emergency Cafe” Fail Can’t “Rudy’s at breakfast porker’s real a to out me took Tong that except a great place (challah french toast!) Emeryville. It was in I started getting cooked well. Two hours later my poached eggs weren’t kept getting abdomen, below my heart, which cramps in my upper relieve the pain, throwing up, which I expected to worse. Then I started I tried being mindful of the pain, at least temporarily, but it did not. which definitely changed the sensation, but I couldn’t is trying to eject itself from your It’s hard to relax with something that do long. it for pain takes a lot of training to body. Or probably any kind of intense stay with. and osteoporosis.) We looked suggested it for menopausal symptoms up side-effects. I seemed to have all of the following: cramps; flushing; and bloating stomach carbohydrates; to tolerance reduced nausea; procrasti- after 6, about By 4pm. about at patch the removed I upset. shaking, me, took Tong car, a in getting dreading was I as some nating which was pretty quiet. Nurse to the emergency room in Oakland, Jackie wasn’t there. do is see if they can rule out the wasn’t on television. First thing they worst case scenarios. For me that was an inflamed gall some bag, barf plastic blue a me gave and blood drew They attack. heart bladder a or up to an IV. Before I got wheeled Zofran (anti-nausea), and hooked me use the blue bag. There were people to a private room I had occasion to I could barely move. I thought about around. What was the alternative? a retching make to be, must that difficult how and barfing acting actors sound that seems to originate deep in your soul. in pain anymore, I would really appreciate it. This is the second time I have asked for pain medication in my life. (The first was after a few weeks of radiation.) They don’t exactly flow freely with the narcotics, do they? You have to ask, which makes me worry that they think I’m the use to you ask people Different drugs. get to there just junky a ‘rate your pain 1-10’ scale. I said 7 and 6. First they gave me Percocet A few positives region! from my nether has moved away The disease it forward to, at least something to look isn’t While chemotherapy shit- out, no more As Julie pointed radiation/burning. doesn’t involve blades! ting razor feeling great the in any pain, in fact I’ve mostly been My lungs are not last few weeks. so it seems likely very well to treatment last time, My body responded … that it will do so again was good because it meant in the interim I was in a much better mood! mood! better much a in was I interim the in meant it because good was my situation, in found himself if he ever was that he said last thing The I have. poise that the same with respond he could he hoped

72 Crap, I’ve got cancer 73 An adventure in how things are Healing Into Life and Death) ( My interview the other day at the Social Security Administration, Administration, Security Social the at day other the interview My been much pretty I’ve that fact the on lately tripping been I’ve I think what I had was a combination of food poisoning and side side and food poisoning of combination a was had I what think I Each unique path led to a common goal … a deeper seeing of life, a … a deeper seeing of life, a Each unique path led to a common goal of deep investigation and deeper participation. Some took the work the cultivation of such qualities as loving kindness and mercy as a lost child might, an open path through the woods … For years our work … has been an encouragement to open fully to this moment in which all of life is expressed, that the optimum preparation for death is the whole- hearted opening to life … June 10: A third opinion and more Kafka Various people have suggested I get a second opinion, again. Apparently in which the reincarnation of Franz Kafka would have felt perfectly at Kafka would have felt perfectly at in which the reincarnation of Franz info gathering. Navigating these home, was OK. It was mostly about acronyms: SSDI (Social Security must know one’s strange skies, one Security Income) and SDI Disability Insurance) and SSI (Supplemental (State Disability Insurance.) cancer (that is, much of the time.) happier since I got diagnosed with Levine books. Found Healing Then I came across some Stephen Into on our shelf. Levine Live to Year Death at Julie’s, then found A and Life and the way he writes about it is works with people who are dying, beautiful. Like so many of us, Levine at first thought of thosewho live those that died failed to heal, but as ‘healed’ and successful, whereas this view changed for him over time. He broadened healing. He says: his definitionof June 7: Acronyms having a great days walking around San Francisco I spent the last few at haven’t seen each other hardly my old pal Jeff. Though we time with of the few people on earth with all since we were teenagers, he is one whom I can totally relax. (oxycodone), which did almost nothing other than making the room room the making than other nothing almost did which (oxycodone), for more, and asked red button the I pressed After sort of weird. seem by the pain reduced It was awesome! which Dilaudid, gave me they it about care don’t you relaxed, so you’re is, thing the but a third, about At stops being important! it just The pain is not eliminated, anymore. that but I was concerned could discharge me, they said they about 9pm, the drugs again as soon as retching in pain home and start I’d just go sort they then and try to crackers and drink a me gave They off. wore because After an EKG got really busy.) (I think things of disappeared. 11pm, around at released was I 46), to down (got low so was pulse my my pain at a ‘2’. gall bladder. The Estradiol, plus maybe a troubled effects from the I can talk to my not use the Estradiol any more until doctor suggested I morning, this up woke I When me. to excellent sounded which doctor, I felt fine, no cramps anyway. I’ve felt very happy, tired not being in pain. … but very much appreciating emptied out somehow and kind of Second question: Why is it important that I have ‘vaginal cancer that I have ‘vaginal cancer Second question: Why is it important Chemotherapy will be every three weeks (last time was weekly). shouldn’t but nausea have might fatigue, is week First effects: Side Had two healing sessions today. One was some restorative yoga with yoga with today. One was some restorative Had two healing sessions In general I have been slack on the healthy food and taking all the all the food and taking on the healthy I have been slack In general metastasized to the lungs’ rather than ‘lung cancer’? Answer: Treatment Treatment Answer: cancer’? ‘lung than rather lungs’ the to metastasized about data isn’t great there of this, Because origin. of is based on cancer vaginal adenocarcinoma. Have to how well this chemo will work with just see how it goes. Carbo and Taxol are also used to treat lung and ovarian cancers. scan to see how it’s going. If cancer is not After three cycles, I get a PET cancer is the cycles six after If drugs. change to will need responding, still there, might take a one month break and start on different drugs. actually vomit. Can use percocet or marijuana. (Wow, someone finally June 13: Chemo info with me to meet Dr S today. It was Lisa Kee, Padmatara and Dawn came Here too. helpful very was it recording and there, them have to great emphatic was O Dr question: First about. talked we things some are Why did it go away? Answer: about cancer in the bones being incurable. are not curable, unlike, for Gynecological cancers in the bone generally which is very sensitive to chemo example, metastatic testicular cancer, this think (I patients cancer gynecological of 25% rate). survival (90% with often that’s and years, five to it make don’t stage) advanced means still be in the bone, but it’s not continuous treatment. The cancer could every six months you would have detectable now. With serial images more information. Dayamudra. She sets you up lying on the floor with various body parts 15 minutes, and over the time you propped up here and there for about parts releasing tension. It body certain feeling of a very tangible get which is kind of hard to with Alan felt great. The other was a session summarize. June 12: Healing and choices June 12: Healing the energy seems of feeling very happy and energetic, After a few weeks the things jobs and I was thinking about When have gone away. to stay alive. Which to me that my job now is to other day, it occurred as much putting myself, which I haven’t been of means to take care energy into lately. the only organization in the U.S. that provides this service for cancer cancer for service this provides that U.S. the in organization only the on to them some forms faxed off So I Francisco. is in San for free patients Friday. Social Security sent me a stack of stuff to fill out,work history summary time. Also the goes back a long 10 jobs, which for the last what sure Not wrong. was that stuff of bunch a had interview my from for paper- of my capacity to reach the limits Might be starting matters. can help. if R the social worker week I will see work. Next I have much work. And It all feels like too supplements, etc. teas and going to feel like Strangely though, knowing I’m massive sugar craving! been feeling great lately on all levels. shit very soon, I’ve

74 Crap, I’ve got cancer 75 An adventure in how things are I’m liking the online Cancer Survivors Network. Though many many Though Network. Survivors Cancer online the liking I’m anecdotal on exclusively rely about read have I ‘cures’ the All medicine of poles different the from reactions knee-jerk Anyway, June 16: Chemo appointment and support group and I will from today. Padmatara a week chemo starts new round of My of the stories are horrible, the people are very encouraging, and it is and it is horrible, the people are very encouraging, of the stories are I do not believe anyone who claims lived experience rather than data. and – things unusual doing by that doubt don’t I cancer. cure can they recover. But I think it is very against all odds – some people completely difficult to identify the exact reason for necessarily isn’t solution person’s one why, exactly say to possible were the recovery. Andeven if it another’s. death. So all these miracle treat- evidence, but fail to mention, well, of kinds of hundreds the of each for rate success 100% a with ments cancer have simply been crushed by the FDA? I might have confidence real data. Which reminds me in alternatives if there were real studies, of kinds “There are many Rock: on 30 Donaghy says something Jack of intelli- actual uh, there’s, then And emotional. Practical, intelligence. (I love that show!) gence, which is what I’m talking about.” to go to a healer who is against seem to kick both ways. It’s confusing diag- my before to went I acupuncturist The way. some in chemotherapy likely to kill you than anything nosis seemed to think chemo is more about Misha Cohen. She really else. That’s one thing that’s so great do for people with cancer and how to understands what Western doctors are oncologists some And harm. minimizing while process that support not sensitive to whether they may be creating a situation in which the - medicine creates more suffering than it alleviates. Alternative treat ‘complementary’ of idea The disabled. you leave to going not are ments medicine seems more useful than ‘alternative’, in that you hopefully get the best of both worlds without totally relying on either. June 14: Cancer cures + I stopped eating sugar, again cures + I stopped eating sugar, June 14: Cancer again shakes protein whey organic fruit/ fresh my drinking started I’ve feel better all day. raspberries – which makes me – this morning with the at yesterday homies the with breakfast my with biscuits have did I Pork Store (the name says it all) which are all refined flour Working on it! made hummus yesterday. … But I mentioned marijuana!) About ten days out, immune system at its its at system immune out, days ten About marijuana!) mentioned - get a (neutro If you people. sick to be around not so important nadir, room. to an emergency to go apart, have hours 100.4 two fever – penic) around that doctors will be in the week so infusion early Suggest doing cultures. tea, or live don’t drink Kombocha comes up. (Also, if something road trip He said a during chemotherapy.) take antioxidants And don’t and are, the hospitals where know as you always long as OK would be I’ve So, clots. blood prevent to hours few every walk and out get you decided not to go to Montana. If something happened during my first don’t I doctors. my from away far far, be would I chemo, the of round 16-24. I will go to the retreat June want to risk it. However,

i When Julie, Morgan and I went to Tanzania, I noticed we all had had all we noticed I Tanzania, to went I and Morgan Julie, When Support group today – it was really good. Other than the emotional than the emotional really good. Other today – it was Support group choc- with Shortbread cookies. tasty-looking really these were There and also me about the Women’s Resource Center Two women told Chemotherapy with Carbo and Taxol: After you first get it, you’re Don’t let your throat tighten with fear. Take sips of breath all day and night. Before death closes your mouth. Rum A few days ago my cousin posted a blurry but cool-looking photo of an owl but cool-looking photo of an owl A few days ago my cousin posted a blurry night. The posted responses, except he had startled in his backyard one mine, were all along the lines of “Scary!” which surprised and baffled a human being have to fear from an me. Owls are beautiful! What does Lots. being? human a from fear to have owl an does What Nothing. owl? animals, fear people suburban or city most that was explanation Mike’s friend told Another cities. fear people country And country. the etc., in he dying, was he As cancer. lung had who son-in-law her about me would not speak of death, or allow anyone else to speak of it. Fear. she was only of insects (granted afraid fears. Morgan was different 9 at the time). Jules got very nervous flying. I dove underwater with else’s can really understand someone Who panicked. and snorkel my you, kill can bugs some Sure, sense. any makes really, it, of None fear? is there but … drown certainly people and crashes, plane in die people all guarantee you’ll live through it. It’s no activity you can do with a June 21: The idea of an owl leave the retreat early, which is sad for me. Viveka was encouraging us us encouraging was Viveka me. for sad is which early, retreat the leave but like to, know. I’d I don’t Sunday.) ends (The retreat back. to come after Misha I’ll go see doctor. from a drive an hour’s is at least Jikoji the chemo. - actu who people from tips and advice get to great it’s things, of level what I or anyway are some highlights, useful things. Here ally say remember: people know This is San Francisco, don’t these olate. I asked myself, craving them, sugar? (I thought I might go mad with they shouldn’t eat but I didn’t.) I asked who in the group did not eat refined sugar, social workers. their hands, including the two almost everyone raised and no one had eaten the cookies. And I noticed that one and they style free wigs and they help you pick UCSF where you get wearing a check it out, though I can’t imagine it for you, etc. I might the time. wig, I am so hot all of the white blood so you feel OK. Then the crash sort of drugged up week is sort of OK. So this seems cells and you feel bad. Then the last word the punch a of much how of today aware so I’m cycle. the be to Will the reality hit as hard as the chemotherapy packs, just as a word. word suggests? I doubt it.

76 Crap, I’ve got cancer 77 An adventure in how things are I am possibly more afraid than I have ever been in my life. I am afraid I am afraid my life. been in have ever than I more afraid possibly I am else. place to deal with fear, and everything A retreat is a great You think stones are food and you eat them; then you suffer, then youYou think stones are food and you eat food then you don’t suffer,have a great stomachache. But if it is real by ideas that don’t go withthen you are satisfied. Suffering is created coherencea is Bliss reality. with go which ideas by created is bliss reality; a dichotomy, a division betweenbetween you and the truth; suffering is with truth, you are in hell;you and the truth. When you are not moving in heaven – that’s all.when you are moving with truth, you are June 23: Information onslaught was it time This do. often days my as pill a with started Yesterday the to reaction allergic an prevent help to anti-histamine an cetirizine, chemo. Padmatara and I were at the Infusion Center by 8:30am. We got 15-minute a with Started great. was which again, nurse oncology the C infusion of something that sounded like pepsis and an anti-nausea thing which I think was dexamethasone, plus two anti-nausea pills. - Then wait 15 minutes and start the three hours of Taxol. They gradu ally increase the rate while looking at you to see if you’re having an allergic reaction, which apparently involves turning pink. I did not turn I want to think of chemotherapy as an adventure. An adventure in how how an adventure. An adventure in I want to think of chemotherapy as things are. irrational and yet … it’s real in the body, and must be paid attention to. to. attention be paid must and body, in the real it’s … yet and irrational now). (until very little to do this I’ve had grateful I am on intravenously taking voluntarily am I chemicals super-toxic the of add more confusion.) sentiments people’s anti-chemo Friday. (Various keep I like finite being up end won’t situation cancer this that afraid I’m Well. chemo? from fear to anything have truly I Do be. will it thinking cancer I do it. As with know how it is until I won’t Maybe. Probably? The of chemotherapy. different kinds are a lot of totally itself, there Streep, skeletal An image perhaps of Meryl word is strongly evocative. advantage, a But overweight people have a cancer in a hospital bed. lose can we that sense the in except true not (Actually, fact. known little discomfort/pain like an animated skeleton.) So weight without looking unlikely. Worse possibilities. Death at this stage very and death are the right now. The even imagine now. It’s all just ideas things, things I can’t It’s the idea of an owl … or a rattlesnake. reality is not known. retreat was the Heart Sutra, a great love of mine The theme of this Also Perfect. projections. Mental Fear. is. What reality. is subject whose pay attention. But feel more on retreat, when you terrible, because you a ritual to Perfect Wisdom led I it to change. what allows also that’s which I really enjoyed. Among (Prajnaparamita) Wednesday night, read relevant teachings, including many other things, people chose and thing whole the readings, the to Listening poem. Rumi style mob flash a fear leave me … not really leave really, was healing for me. I felt my Here is what I read (from Osho’s me, but relax the grip on my heart. commentary on the Heart Sutra): Side effects of the three anti-nausea drugs include constipation include constipation anti-nausea drugs of the three Side effects Other than anti-nausea pills, I was also prescribed a filgrastim for six hours, off retreat and sat in a small room Having just gotten Oh, I could take it or leave it, life, I thought before this happened. before this happened. Oh, I could take it or leave it, life, I thought these heaving lungs, these What’s so great about this beating heart, and signs its name? But threaten eyes through which the world enters What pleasure in every heart- to take it away and see how I change: in the color of a rain cloud! O beat and every breath! What complexity lose life and then to get it gods of chlorophyl and proteins: to almost back! How bright this earth now! How beautiful these faces! I stop at every stop sign and look around to see what new miracles there are. I have to confess to things seeming not quite as miraculous for me, six I have to confess to things seeming not quite as miraculous for me, six months into it. However, I’m still doing all right, so far. I’m learning need, I levels, ask for what better on multiple to take care of myself how not and life, my appreciate ways, certain in understanding expect not get too angsty about stuff. June 24: Cat naps of subject the on touch who like I writers of couple a across come I’ve cancer. One is Stephen Levine (Dharma author Noah Levine’s Punx local who writes the advice column father). The other is Cary Tennis, a Looks like he had a cancer ordeal “Since You Asked” on Salon.com. know don’t I so 2010 in written was it though weeks, seven lasted that wrote, he something found I Anyway then. since happened what’s Having cheated death, I feel alive, that I related to: pink, which surprised me, since I often do. Then the last half hour is the the is hour half last the Then do. often I since me, surprised which pink, ache. to hand started on my site the injection the end Toward Carbo. food starts is why which platinum, heavy metal the Carbo contains The platinum, gone I’ve golden, longer no am I So weird/metallic. taste to for a while. Dorothy I be saying, like forward to. (Or will kind of looking which I am this?) fresh hell is Parker, What Day on starting week a for self-inject to supposed am I which injection, to counteract for bone marrow stimulation, 4. It’s a growth hormone it is also reduce the risk of infection. Unfortunately neutropenia and can that things few a are There pain. bone-crushing cause to known it do not experi- S said 50% of his patients who take help with this. Dr Glutamine, an also vitamin B6, and powdered ence bone pain. There’s help. amino acid, that can but we made it to Francisco seemed very strange, driving across San changing regimen the take, to (pills) herbs of loads me gave She Misha’s. plan. She has new treatment phases of chemo, and a with the different seen people in terrible pain from the filgrastim injections and asked if tests often to make sure my blood I could try not taking it but get blood they If Monday. on about this C and S Dr to I’ll talk OK. counts are I Anyway, day. that injections the with start to have I’ll it for go don’t great afterwards. had a treatment from Misha and felt

78 Crap, I’ve got cancer 79 An adventure in how things are I managed to get to Rainbow Grocery and among many other things and among many other things I managed to get to Rainbow Grocery (which actually takes very little For lunch I made sprouted hummus I feel weird but it’s hard to say exactly how. My hips seem to be I got my award letter today for disability which will start in August, today for disability which will start I got my award letter Other than two sun hats, the hats I have are going to be too hot once once hot too to be going are I have hats the hats, sun two than Other buy two big Turkish figs. But then, it was as if I had gone to Mars and you if find might you one but perhaps, fig Martian real a Not fig. a eaten Everything descriptive. sufficiently that’s hope I Who. Doctor with were tastes only slightly like itself. skyr, Icelandic-style coconut- effort) and cucumbers. Also had some flavored yogurt, in honor of my sister, brother-in-law and as close as I’m going to get to who are now in Iceland. It was good, step-mom and ice cream. Later I made miso soup with soba and a few beet greens. So I seem to be getting back into the mode of self care. or enough, around moving not I’m because either is which more, aching because the chemo is making my arthritis worse, or both. I did manage to take a little walk and do some yoga today. Seems like it’s going to be of lots eat, to manage can I food healthy finding digestion, the about all liquids, and getting enough rest and movement. Food on Mars it’s all right not to do the shots and Dr S called this morning and said Without the shots, there is a 20% just see how the next blood tests look. means neutrophils are below a chance of neutropenia, which I think an ‘Area User Curve’ of 5, what- certain level. He said something about huge relief. Misha was pleased to ever that means … Anyway, it is a low we can up the dose of Marrow hear it too. She said if the counts are Plus (an herb blend) I am taking. so I need not worry about being a burden on anyone. It’s less than whatthan less It’s anyone. on burden a being about worry not need I so little … still, it is for the Center, which was very I was making working all right in the the pattern seems to be that I feel a great relief. So far eveningThis that. after crash then even, energetic positively mornings, was surreal – the blooming plants,on a walk with Padmatara, everything blasting from a parked car.the architecture, the Led Zeppelin song June 26: An actual cancer patient An actual cancer June 26: seen myself, I had never becoming one to me that before It occurred like look usually They movie. a in except chemotherapy on someone oncologist and and they usually do. Dr J, medical they’re about to die, So went my called this morning. director of thesecondopinion.org, I am getting the As last time with Dr C, he said second second opinion. I didn’t get considering the rarity of my condition. standard treatment I have. What are commented on what a good attitude much new info. He that he talks to? I have no idea. the other people like my hair falls out. I will get a wig I think (special occasions?) but wigs wigs but occasions?) (special I think get a wig out. I will falls my hair may I lightish scarves. some need to get probably I will hotter! are even less and (upbeat of lots is there see I see. we’ll too, look bald the try just the video to make sure You sorta want on YouTube. upbeat) tutelage of hair look different. scarves on heads person, because has a bald And I started feeling weird, something but not quite like my body but not quite like my body And I started feeling weird, something oriented treatment cancer new my of one from chard some made Cull Good god, endlessly talking about food and my health etc. is so Shall I reveal what happened afterwards? Well. I pretty much much Well. I pretty afterwards? what happened Shall I reveal being wired up and weirdly drunk at the same time. With random pains pains With random time. same the at drunk weirdly up and being wired was a little high. For a coming and going, and chills. My temperature few moments I thought: Oh my god, I cannot take this for five months! into now, which can only be itself. Then that thought kind of merged wonton beef and ibuprofen, of mg 600 and while, a for down lying After soup, the elixir of the gods, I felt fine. I might try marijuana at some point and see if it helps anything. very good. I will start eating less cookbooks by Rebecca Katz today, pretty much a laxative, it’s but now It’s so awesomely tasty right fruit. every other day, and not doing and has a lot of sugar. I’ve been walking at the chemo sheet nurse C gave very much yoga, alas. Also I looked on me told nurse another what unlike sensitivity, sun found and me how when you ask someone a ques- the phone the other day. You know but that they’re going to answer tion, and you can tell they don’t know, anyway? So, sunscreen. boring. But I carry on, it’s all I got. How am I? I can’t answer that question in a general way. I feel great when I wake up. Before I lay my head down again, a kind of fog will slowly settle in, and my body will watching off the night Capped change. will then which things weird do some Louis C.K., which was great. June 30: Uncomfortably numb June 30: Uncomfortably movie with Cull popcorn yesterday watching a While horking down go numb – also my feet and hands started to about male strippers, warned was I chemotherapy the of effect side a – neuropathy as known it is reduce your dosage next time, about. I think all they can do about goes unchecked, the nerve damage or change drugs. If it gets too bad or to do about it is let my doctor know, can be permanent. All I’m supposed only on weekends. but these kinds of things seem to happen June 28: How much to reveal? to much How 28: June this UCSF class at Movement Restorative to a Feldenkrais Went the is kind of which nothing, did almost We fantastic! It was morning. At movements. small very involving practice awareness an is It point. firstI felt all tight and trying too hard. Forty-five minutes later, much and spacious. more relaxed I had my house. Last night could get back to myself before I diarrhea’ed night. I through me all thai, which blasted slightly spicy pad rich and get I chance every toilet the use to remember Must done. was it thought pretty rough all before I get in the car! Felt when I am out, especially energy level, gut of bed. How I feel, what I can do, day, hardly got out 147 days of chemo change quickly. This is Day 6 of situation, seems to effects, at least. My first round of treatment, during the radiation and important to be prepared to die. It still feels chemo, I was mentally living. time, though, I am planning on prepared to die. This

80 Crap, I’ve got cancer 81 An adventure in how things are Things aren’t more colorful or happy or what you might think of as there ourself, about something especially something, observe we When When you first start, and later too, you’re mostly as-if. Everything But everything’s set up for this now. You go against – which means from separate I am why but ... message pain their send knees my Still, spiritual, in fact there is a completely sponge, sea trim a is mind of my and fascinating, quietly sadness nonetheless to them all. But they are drenched with lucid clarity. Sometimes observed. is what as well as observer an of sense a usually is way other the it’s sometimes ‘real’, more the be to seems observed is what around. Say you notice there is thinking. Where is the energy, where is A bright afternoon, outside, loving the tree stumps. A bright afternoon, outside, loving the Sitting here together, we are each watching the mind, feeling the body, living the senses. These aspects of me respond in various ways to of evolution. situation, in which we go against aeons this is buzzy. That’s why you don’t want to do it, to disturbing go creaking sounds. The body against. cries out to There be heard, like are a baby that keeps pretending to be hurt. you just stand there, you get swept away, you recover The direction. other and the flowing starts stand and up gives river some the then – more senses lose their hunger and become a very large orchid that flourishes pass. and dies, flourishes and dies. Hours to trying knees my Are opposition. creates It away? far so Why knees? my pick a fight? Why is the situation like this? Not much happening in the way of answers. Rabindranath Tagore The song I have come to sing The song I have come this day. remains unsung to I have spent my life stringing and unstringing my instrument. Memoirs of observer and observed Memoirs of observer 25 March 2010 I guess I’m still seeing some things, seeing that this is the way it and waves, in pass emotions emails, reading am I when that notice I again myself subsume will I that certainty, the idea, the like not do I Now, Now, here, the observer is so large and lucid and absorbent that it I see a motion picture of myself doing the next potential thing: killing I’m think, I is. ground the soft how notice and walking begin I It’s sad. I watch her thrashing. I wonder about staying with her ’til moment Each view. of points and responses of spectrum the contain I usually is. But now, it hurts. The observer observer is no is longer the a world’s largest shrunken sea sponge. head. Habits are The a blue whale with a barnacle on it that observes. I usually do not take time to acknowledge them. Things get tangled up. People shrink to fit insidemy screen. My affection for them shrinks as well, unless I pause. But myself. release to retreat next the for wait and habits, of world the in off-white. gray, dark rather, but white, and black so Not is. it how is that Now I am drinking beer with an old friend and it is nice. I start to get adds another point of view. I realize a minor version of the spins, which the in caught But moment. every in aware be to is want I that everything habits and complexities of daily life, the moments are lost, in movement mistaken for meaning, in production, in resistances that rise and fall, noticed and unnoticed, in the idea of time that rules my days, in trying to put a patch over the vacuum, in the essentially painful chore of being someone, needing. the life force as it were? Maybe the muscle is in the thinking process, and and process, thinking the in is muscle the Maybe were? it as force life the what maybe Or weak. relatively seems thoughts the noticing is whatever spaciousness. in the tiny blips are just thoughts and the is vast, notices sort of envelops what is being observed. Both are in a way exactly than we think. and more huge, are both smaller, same; they the climbing up that tree. My next move is projected before me, as if I living am a movie that shows short clips of my thoughts about what to do next. I can hear electricity. It’s like being a child again, or an acid trip ... but really it isn’t like either. It’s further inside, and it’s the result of conscious effort, trying to stay upright in the stream, subtler and deeper. essentially different, which makes it things here. Jains sweep their path before walking to to remove reduce death. I walk a insects, short distance; there isn’t really a trail. When I turn around and stop, I hear leaves rustling. There is a small skink under the leaves. to side. I must have stepped on it thrashing from side die? to time long a takes she if What die? doesn’t she if what But dies. she I’m not going to squat there for 12 hours. Or even one. Am I heartless or lizard. the to kindness loving send I neither? or both, Or sentimental? ... I cannot tell which. is very clearly either tragic, or insignificant.

82 Crap, I’ve got cancer July 2012 The emotions of statistics July 28: Did I say anything about my talk at the center? It was intense for me, but I did enjoy it. Photo, Kathy Cullen 85 The emotions of statistics Though my hair has started falling out today in great swathes, and and swathes, great in today out falling started has hair my Though The lady who teaches pilates for cancer patients at UCSF called me called me pilates for cancer patients at UCSF The lady who teaches off downtown and headed for Then we picked up Po, dropped Lena I am very tired (of course it’s also 1:30am), I have felt remarkably well I am very tired (of course it’s also 1:30am), I have felt remarkably well for the last week or so. Paulette was here doing a lot for me – laundry, the to taking her I’m awesome. it was – errands cooking, cleaning, airport in a few hours. House will be empty for just a day or two, just me and the kitty before Jeff arrives. July 6: My hair’s falling out shower, my after and morning, this with Dawn hill the up a walk took I of hair fell out. So far I have I brushed my hair forward and a bunch patient, because I look healthy, managed to avoid looking like a cancer cancer patient to be. But the sight and I am fatter than you expect a “cancer patient”. I shall have to of a bald woman pretty much screams myself, which I sort of have to be. get used to that. I’m very focused on energy to think of others more. I’m also thinking about using my spare really great org that among other I told Nancy from Nancy’s List (a I things offers free sails around the bay to people with cancer) that would help with looking for funding. Hopefully I will have the energy next week to spend a few hours at the Foundation Center downtown. back – she was encouraging me to keep up the exercise. She said more She said more me to keep up the exercise. back – she was encouraging a huge difference. is showing that exercise makes and more research treat- the of tolerance is in difference the if sure not think of it, to (Come of how I feel, it makes a huge ment, curing cancer, or both.) In terms the and move, can I the less move, I less the like seems It difference. To an extent. more I move, the more energy I have. another moxa tutorial, this time Misha’s, where poor Jerome had to give we both then forgot about it). They for Po (last one was for Kathy, but same principle as the needles, but want me to do it every day. It’s the of vaguely smells that cigar a holding like It’s instead. heat applying or so away from the skin at certain marijuana (but is mugwort) an inch heat feels great. points in my abdomen and feet. The July 5: A good day to have cancer July 5: A good day I ate like a cochon say, what a great day I had! Mon Dieu, as the French walking around Spent the morning at Lands End … and I felt great. I haven’t seen in a my wonderful friend Lena who and catching up with splashed really I Chalet. Beach The at lunch deluxe a Then time. long the duxelles and and a decaf coffee. Not to mention out, having iced tea the debauchery? mache. Can you imagine But we rely on these numbers. On an almost instinctual level, high an almost instinctual On on these numbers. But we rely take care of I think, that the current chemo will I realize now what more subtle in the eight months My thoughts about it have become to acknowledge fear. I think Denise said she takes time every day Then what I am afraid of comes. Then what I am afraid of comes. I live for a while in its sight. What I fear in it leaves it, and the fear of it leaves me. It sings, and I hear its song. Wendell Berry, from ‘I go among trees’ July 8: The emotions of statistics of emotions The 8: July to I am going or that to live, am going tell me I anyone had I haven’t odds about Or any not work. work, or will treatment Or that the die. to help on studies are estimates based As I have said before, anything. They individual patients. treatment for decisions about doctors make had who Denise, patient. particular a for prognosis to relevant not are her was prediction for other day that the said the twice, breast cancer up in the 2%. rate. She ended 98% success helpful more Is it relaxing. are positive outcomes) (suggesting numbers be part of the statistic will one that to tell oneself the positive, on to focus does it. “Positive I suppose it depends on how one that lives/thrives/heals? positively, try to think I don’t and aggressive. be avoidant, can thinking” filled in. more that blanks automatically get or negatively. It’s that. There is lungs, and I’ll be done with it all after the cancer in my last treatment to well responded I True, view. this for basis no virtually unknown. I care of myself. But the outcome is totally time. I take good harder be would it think I with. myself trick to odds any have even don’t 70% chance of were numbers: 30% chance of this, to do this if there that. I fill in the blanks in my own way, mostly not consciously. AndI fill them in in the way I do probably because on some level I still don’t a candidate for cancer. This whole think of myself as someone who is screen of my life.. ordeal has got to be just a blip on the since my diagnosis. At first and for some time, it was: I’m either going The possibilities. other of aware not was I die. to going I’m or live to either going to struggle with cancer/ subsequent dichotomy: if I live, I’m treatment was over and I wasn’t treatment my whole life, or not. After the by disabled be but cancer, without live I Will quickly: recovering a great deal of fear about what treatment? Then most recently, I had to fear of lot a There’s body. my to do would cancer, not chemotherapy, deal with, all to do with future possibilities. she lets it all happen. Then she she said in the shower after swimming, time. If fear comes up during the puts it in an imaginary box until next creative A box. the open to time the for wait to herself tells she day, is just try to be aware of thoughts, way to deal with fear. All I do really this happens? What if that happens? particularly of speculation. What if see the suffering in this, and let Slowly I see myself creating scenarios, and the freedom that brings. them go. I’m getting better at not knowing There’s always a new thing not to know.

86 Crap, I’ve got cancer 87 The emotions of statistics The nice thing about meeting Dr S is that chemotherapy becomes is that chemotherapy becomes The nice thing about meeting Dr S For example, normal range Blood counts came back and look good. Did my community service for Nancy’s List (looking for potential (looking for potential for Nancy’s List service Did my community of the 21-day jetlaggy, spacey. I think my version Starting to feel very July 12: Things to do for your cancer patient pals get can cancer with people of family friends and that lot a heard I’ve was I do. to what know don’t but help to want they because frustrated thinking of making a list of idea … BTW, if someone says to me, Let I me know if you need any help, they will never hear from me, because don’t know what they’re offering, or if they’re just being polite … and run-of-the-mill. It’s totally normal to him, and he’s funny. You deal with with deal You funny. he’s and him, to normal totally It’s run-of-the-mill. emergency my about briefly talked We work. it make and symptoms the sick. and didn’t get the same eggs that Tong ate room visit. I mentioned immune compromised, could be He did not think that meant I was more in them and his did not. just that the bites I took had bacteria and red count blood cell White Mine is 62%. is 41-81%. for neutrophils but still in normal range. I wish I blood cell count are on the lower side could see what they would be if I weren’t taking all these bloody pills! July 11: Who’s the fat old bald man in the mirror? July 11: Who’s the fat old bald man there is nothing wrong at all with I hasten to point out that of course think I was one. Until today. old men. The problem is that I didn’t It afternoon. this hair my of most off buzzed kindly Shantinayaka – everywhere hair my of bits seeing and weird, look to starting was right now, or in my food – was for example, on my computer screen hair 15 or so years ago, you could driving me crazy. When I buzzed my 20% density. It will be easier not see my scalp. Now I have around which I imagine will be soon. I to take perhaps when it is all gone, Cancer Society to do a wig have an appointment through the American fitting tomorrow morning. Or, as it is I that. bald. There’s still plenty of time for thought I might being enjoy July 10: Continuing hair trauma hair Continuing 10: July like I looks it still out. I mean, is falling my hair yet that can’t tell You have I day. all eyes my into out falling it’s But hair. of head full a have am I that is Fact out. run to got it’s point some At hair. fine very of lots costume. cancer patient mandatory bald my imminent and dreading a full for eight months with had a good run get used to it. I’ve And I will head of hair! an email I was there got Center) and while the Foundation funders at after funders for look to me need really didn’t she saying Nancy from all! I did finda few places that might give me a writing grant. It was Social my appealing of thinking also I’m different. something doing fun me help to lawyer the getting is, (that August in starts which Security back to January). get the back pay going Must-have 19. end. Today is Day toward the cycle is feeling ass-kicked changing my all of today schedule complicated a made I nap. afternoon six days, I take 30 the 21 days. In this phase of pills etc. I take during up the walking every day. per day. I’m keeping

How To Behave With The Ill With To Behave How by Julia Darling not to us assertively, try Approach fearful. sidle, it makes us cringe or smile. straight up and Rather walk invited, Do not touch us unless squeeze upper arms, particularly don’t hands. Keep your head erect. or try to hold our or lower your voice. Don’t bend down, say Speak evenly. Don’t an underlined voice. ‘How are you?’ in that you were very ill. Don’t say, I heard paranoid. This makes the poorly your cancer?’ Be direct, say ‘How’s well we look. Try not to say how you met in Safeway’s. compared to when Please don’t cry, or get emotional, and say how dreadful it all is. Also (and this is hard I know) try not to ignore the ill, or to scurry past, muttering about a bus, the bank. last Remember that this day might be your us and that it is a miracle that any of stands up, breathes, behaves at all. zero emotional intelligence. I My point is that sometimes I have it’s difficult to ask for help anyway. I am too tired now to write this list. list. this write to now tired too am I anyway. help for ask to difficult it’s in the meantime: enjoy you may a poem So here’s write very directly, and regularly do not anticipate any subtlety in how it may be received. I do this not because I want to be harsh, but because please So critique. a as taken be may it that unaware completely am I imagine I am saying the words in a kindly voice. If I make a suggestion, I am sincerely trying to be helpful, and if it is not helpful, please feel free to ignore it, or tell me how it affects you, or read it again hearing it in a kindly voice and ask yourself if it really applies to you. There is no need to be nervous about saying the wrong thing to me. I love you for July 14: No need to be nervous and realized that I write certain I was pondering this blog today don’t actually mention that. I may things here for certain people, but usually else someone then … write I when person one of thinking be a very close friend – after writing about/to them! Like I was if asks ask her for help when reading yesterday’s entry – asking me if I don’t too. Sometimes I can’t anticipate I need it. This happens in person, I assume that everyone to whom what someone will take personally, in hindsight, it seems obvious it doesn’t apply will know that. Then be well could me to obvious are that things because wouldn’t, they that coming out right … obvious only to me … this isn’t quite

88 Crap, I’ve got cancer 89 The emotions of statistics

Julie offered to to offered Julie

As you may have gathered, having clumps of hair falling off my off my hair falling of clumps having have gathered, may As you masses pack and out sort to had I Julie’s at night the spend to order In I’m giving a talk next Weds at the Center about my experience of I’m giving a talk next Weds at the Center about my experience of Had a great time yesterday catching up with my old friend Sara who up with my old friend Sara who Had a great time yesterday catching Factoid: The widely-used chemotherapy drug Taxol was discovered was discovered chemotherapy drug Taxol Factoid: The widely-used head and making my scalp all patchy and cancer patient-y has been been has patient-y cancer and patchy all scalp my making and head healthy, to seeming become very attached Apparently I have disturbing. normalcy of months eight After not. am I technically though even to a shorn radio blasting suddenly became word), my head (not a real grim even a modern that I am possibly that I have cancer, everyone think I hurt. to scalp is also starting my me out, and freaks reaper. It a picture of the help. Then I can just carry around shaving it all off will in an emergency. Pope and tear it up heat degree 20 a for Clothes sun. for including coverings Head things. of glasses. And book of notes for blog. Erg. Keyboard, increase, laptop and Camera battery crucial Ativan and psyllium husk. I forgot the rather charger. Book. Flip flops. Hiking shoes, but I think I forgot those too. mail. Snail Calendar. pencil. Eyebrow bottle. Water help me gather my things, I really should have taken her up on it. things, I really should have taken help me gather my I wish I were able able I were I wish this. reading are you that including reasons many be any doubt. never there could that that, such communicate to always July 19: The 18-week marinade On Friday morning when I asked C if it was time to start the chemo, he marination the And first. more little a marinate to needed I that replied has continued. Have felt so very drugged … and now coming down, way having cancer. It’s so personal I don’t quite know what to say. Thinking having cancer. It’s so personal I don’t quite know what to say. Thinking of themes: Preciousness of life, impermanence, anxiety, and love … I haven’t seen in about ten years. She’s just finished nursing school.I trusted my doctors, and also how noticed that I told her how I really some serious medications twice, my doctor has wanted to give me either of need that I didn’t really when upon further inquiry it seemed them. After my first treatment, he wanted to put me on Pamodrinate if he thought I was particularly to prevent fractures, but when I asked Then after the second treatment/ vulnerable to fractures, he said no. to combat neutropenia, even though chemo started, the Neupogen shots and the risk is only 20%. Sara my blood counts have been very high, of loads you give to wants just profession medical the that mentioned true. drugs, which certainly seems to be July 17: Chemical cocktail Mostly of the pick-me-up My body seems to be raging with chemicals. wah-wah, jet-laggy spaciness. And variety, but there’s the occasional long long, a me takes it And toes. numb and pains, and aches odd the which I have been every night time to go to sleep, unless I take Ativan, 5am!) until bed in awake stayed and Julie’s at was I when for (except tired. Still, I would rather be energetic than on my birthday! Exactly one year before the day I was born: August 21, August 21, born: one year before the day I was birthday! Exactly on my 1962. But then then But

death. and life of matter great the perfuming

Today I am far inside myself, dreamy. I am seeing people through through people seeing am I dreamy. myself, inside far am I Today The other day someone grimly commented that a lentil soup I had The other day someone grimly commented that a lentil soup I had Kathy referred to me as a eat. Kathy referred to me as a People are often surprised that I can Now I am assuming that the cancer in my lungs – or must I use or must I use that the cancer in my lungs – Now I am assuming week. Feels like getting into Don’t know if I can give the talk next I’m assuming means they’re P.S. My eyebrows hurt today. Which I was reflecting abouthow my Buddhist practice has changed. Now July 28: Tripping and nose hairs I’ve had a runny nose for some time now and was wondering if I have a - made looked “healthy”. I’ve noticed that people who use that designa least at or … vegetables with unfamiliar way some in be to seem tion not on speaking terms. It kind of feels like they’re insulting the food you made, like a fashion designer calling a pair of shoes “comfortable”. gourmet cook this morning, because I was eating eggs with chard and I was eating eggs with chard and gourmet cook this morning, because mix) organic an from (made pancake a and cheese), (Spanish manchego I made up a recipe for wontons: with fresh currant sauce. And last night sausage, and oyster mush- minced water chestnuts, garlic, vegetarian rooms. (Although using our shitty teflon pan wrecked some of them.)I often I hand. on stuff and energy, and time the have I when cooking like a bit hit-and-miss. do not use a recipe which makes it July 24: Side effects a person skinny. In our minds. In Chemotherapy is supposed to make the last thing it’s supposed to do. the minds of medical people, that’s you, the more likely you are to die, The skinnier chemotherapy makes tolerate the treatment. Which is because it’s predictive that you cannot skeletal people and death. maybe why we associate chemo with the cursed word nodules? – will be crushed by the cytotoxic tsunami in tsunami in – will be crushed by the cytotoxic the cursed word nodules? about that marinates … and if it doesn’t, angsting which my body now most I knowing: not there’s Sure, it. for me prepare way no in will now of the outcome, But there is always some sense certainly do not know. don’t I it. about think have to even don’t I things, affects it there, it’s it happen, things positive makes necessarily attitude positive a think flesh. feel like less of a thorn in one’s just makes everything a car accident and trying to give a talk just doing what I can, that that is windshield … Danamaya suggested as you’re flying throughthe enough. She is probably right. about to fall out. any degree of certainty and the future disappeared. And I thought for for And I thought the future disappeared. of certainty and any degree only not know. I possible to be neutral about that, to a time that it was see now that I was still filling in blanks, to some degree – mostly with death. it seems to be all about noticing and reflecting on my I used do more than that. I used to people, and writing. talking with mental states, was out the future. There I used to map every day, and to meditate least an a future, or at to be, somewhere, always seemed always, there future imagined a telescope. down.

90 Crap, I’ve got cancer 91 The emotions of statistics I drove to the health center twice today. Fasted overnight, went to Fasted overnight, went to I drove to the health center twice today. I’ve been tripping a lot lately. Not in the usual sense of the word word the of sense usual the in Not lately. lot a tripping been I’ve Feldenkrais/restorative movement, had pre-chemo blood drawn this had pre-chemo blood drawn this Feldenkrais/restorative movement, thingy recovery in art the to go to Wanted S. Dr with met and morning, instead. asleep fell and home came but there, down was I as long as meeting after tonight Center the II at talk cancer gave informal Also reading! My head is kind of spin- someone for dinner and getting a tarot some more down time. ning. Need to figure out a way to get July 30: Spinning head is going well. For those of you My process of becoming a private preceptor it’s not that easy to explain. The who aren’t familiar with this process ordained for ten years, someone short version is that once you’ve been which means that you will ordain can ask you to be their preceptor, a lot of people agreeing that it’s them when they are ready. It involves OK for you to do it, that there aren’t any major or unresolved conflicts else involved with this Buddhist with any Order member (or anyone know you best to write feedback, community). And you ask those that of challenge. There are some more areas you are skillful in and areas a wonderful process. steps to come but so far it has been cold, though it didn’t seem like it. So the big news is that this happens happens this is that news the big So it. like seem it didn’t though cold, I’m in hair. Revelation? any nose have I don’t apparently, because, Central sizzling the (in sisters three my with weekend the for Fresno Can’t from San Francisco). or so hours’ drive California, three Valley of more those of one scratching She’s either. sleep can’t Laura sleep. about my mom And we talked with a quarter. lottery tickets involved later, melatonin of milligrams Nine terrible. it’s Alzheimer’s; has who … slumber pilates class strange or interesting. In the cancer (when I use it) of exercises. type few balancing a did we great, was which yesterday, bathroom the to go to up getting Then balance. good have I Generally guess it’s from the numb feet. fell over. I can only I tripped and almost reduce my chemo it on Weds and maybe he will I’ll tell Dr S about it’s a bit tired. It’s not exactly sleepy, and dosage. I’m getting more (but sweets and coffee for craving causes It time. same the at wired Laura said to me getting used to the hair situation. not too bad). I’m my scalp has beautiful and it doesn’t matter what yesterday that I am like that. It was nice. on it, or something My time, by Leonard Cohen My time, by Leonard out My time is running and still I have not sung the true song the great song I admit that I seem to have lost my courage a glance at the mirror a glimpse into my heart makes me want to shut up forever so why do you lean me here Lord of my life lean me at this table in the middle of the night wondering how to be beautiful

92 Crap, I’ve got cancer 93 The emotions of statistics Part of my process is accepting this aspect of myself, not trying to To see the preciousness of life, we have to stop focusing on what we Seeing the suffering in life and not turning away from it. From our This is one way that we free up creative energy, by engaging with Wallace Stevens wrote: “The way through the world is more diffi- One aspect of creativity is appreciating things, affirmation, being in the touch essentially with is the “art that said Nietzsche life. of preciousness the blessing, and the deification of existence.” This is very interesting to me personally. I think I naturally have a great love and of appreciation the preciousness of life. I also have this deep kind of hatred of life. I don’t know what is underneath what. I would like to think that the love is underneath the hate, and I think the odds of that are pretty good, but just based on my experience, I do not know for certain. I just know that I get overcome occasionally, sometimes only for you’ll if a is, everything point, no few is there care, not do seconds, I of sense bodily very with a pardon the expression, completely fucked. change it because I can’t, although it may well change. I don’t need to make it into a problem, just know that this is part of what informs the appreciation is also part of that. way I experience or interpret life. And think is wrong, and obsessing over how to overcome what is wrong and is, it what for suffering see to have We met. standards and needs our get see into the heart of suffering, see it even if it is covered over or cloaked by an angry or indifferent face. This is part of the reason our life is so precious, because of all the difficulties, and the fact that whatever good not be here tomorrow. conditions we may have today may own suffering and the suffering all around us. Seeing the suffering in our entrenched relationships and working on them. Which are possibly some of the most ‘reactive’ connections we have, perhaps with people in our family. have all we think I relationships. human tangled-up our untangling and them. (If you don’t have them, then you perhaps available!) have a lot of energy cult to find than the way beyond it.” Very true, very beautiful. As we go how deeply see we is, there difficulty much how see we world the through day. every it feel We is. life this precious how is, opportunity this precious How lucky we are, and our pain, and what is made by the combination of the two. The preciousness of life The preciousness February 2010 From a talk on creativity, Trungpa agrees: “Genuine inspiration is not particularly dramatic ...... dramatic particularly not is inspiration “Genuine agrees: Trungpa Trungpa also says, “We have to be honest, real, and very earthy, and in locked felt I when day other the lines these along shift small a felt I Non-aggression means whatever is not aggression, which suggests We don’t ordinarily think of associating Buddhism with love. It has It comes from settling down in your environment and accepting situations situations accepting and environment your in down settling from comes It as natural. Out of that you realize you can dance with them.” He also says that “Genuine art – Dharma Art – is simply the activity of nonag- is Aggression aggression? by here meant is What Fascinating. gression.” reactivity. Aggression is unaware stress, confusion, suffering, shutting not seeing life, not appreciating life. down toward life, things as they are.” we need to really appreciate stress and went for a walk up the hill and saw three beautiful Siberian huskies. There was a lot to appreciate before I saw them but after I saw everything else. them I was more able to appreciate love. Which brings to mind that saying, “The creative mind loves where there is no reason to love.” The creative mind takes Rumi’s advice, who tells us that “our task is not to seek for love, but merely to seek and find is this So it”. against built have we that ourselves within barriers the all mind. part of the work, the play of the creative kind of a rational, mental connotation in the west, where many fear of hocus pocus. us I think we need to start associating Buddhism with love. Ideally people who meet us would automatically start to associate are. Buddhism with love just by how we

94 Crap, I’ve got cancer August 2012 These are not obstructions to enlightenment

97 These are not obstructions to enlightenment It’s true that I have spent spent have I that true It’s However, I certainly enjoy a enjoy I certainly However, The onc. nurse I had today was surprised I was taking the taking I was surprised I had today was nurse onc. The The chemo session was unremarkable, except no C and we were with no C and we were except was unremarkable, The chemo session sadly which Friday of instead Monday to day chemo my changed I trippy. very chemo, from Misha’s to quest cross-town the Again August 4: “Don’t worry about flaking out” August 4: “Don’t to part of chemo SF today for a short visit, and went Savanna came to had croque we Afterwards and acupuncture. and I, with Padmatara to meet at 9am at Tartine. We arranged monsieurs with mushrooms to New York. I head to a play and she heads home tomorrow before She said something like, “Don’t worry about flaking if you’re too tired it was delightful I am very unlikely to cancel but or change your mind.” understand. would she did, I if that, hear to other folks in the bigger room. I should have asked for the private room, in the bigger room. I should other folks but my chemo sessions are long now, minimum of five hours, so getting Actually it was interesting a free room will be more of a challenge. people cycled Different longest. the there people. I was other with being Dr dexamethasone – oral the halved they And chairs. other the through way better. I am prone to some was S must have talked to them – and it better to say just occasionally mania … or maybe it’s of sub-clinical kind - In any case this chemo and accompanying Rx greatly ampli high-strung. fies that and I was starting to find it kind of torturous. Talking tothe because example, I embarrassed myself day, for other the worker social pretty I felt like I was talking too much but couldn’t shut up! I much than a lot of people, perhaps I am much more sensitive to drugs think etc. organic, that I’ve gone now more even my for better much works it but anymore, C have won’t I means days- the in wrong very goes something if means also and schedule, after I can call the oncology nurses or my doctor rather than deal with a general advice nurse and go to the emergency room. Misha was impressed that my oncologist didn’t get miffed about the herbs … I see that I have an appt with Dr M on Sept 17, before my fifth chemo. I’m not sure if that’s a mistake, as Dr S said he’d be away for two weeks, not five. If it’s not a mistake, I may consider changing a (relatively) colossal amount of time with people for the last … yeah, I the last … yeah, I amount of time with people for a (relatively) colossal enjoyed all of be at least a month or two now. I have don’t know, must almost overwhelmed. (I have all it, but it is a lot, and sometimes I feel great.) day Sunday unscheduled so that is mild boost. anti-nausea stuff for five days – she said it was supposed to be three – (It’s three days plus one what it was. but then I couldn’t really remember seems to be the problem.) morning on the fourth … the dosage Aug 8: Aug like. robots looked the I, Robot What how at I’m surprised Sometimes I am. euro-looking north psychic-revelation.com, psychic-revelation.com, the ‘final outcome card’ in my reading Playing with various sleep aids. The Ativan Playing with various sleep aids. The pretty much doesn’t work ocean which the by I’ve walked days. couple of the last sunny been It’s Ever since I said in my talk that things are simpler, I don’t feel guilty guilty I don’t feel that things are simpler, I said in my talk Ever since The 6 of Wands is a very positive omen. It can indicate that despite the that despite the a very positive omen. It can indicate The 6 of Wands is out on top. facing, you will overcome them and come challenges you are things toward literal or metaphorical movement; This card also points about happiness positive way. In general, the 6 is are changing, in a hard work are about to see some results for your and celebration. You way. You a break or treat yourself in some and efforts. Give yourself about health, relax. it. Health: If you’re worried have certainly earned that you’re asking about as Things are not as bad for you or the person strength that will sustain you fear. There is an underlying, spiritual about. Take heart. the health of the person you’re asking anymore so I’m going to try to stop taking it. I’ve gotten higher-dosage it. stop taking to to try I’m going so anymore it (650mg), and marijuana (I used to call melatonin (10mg) and valerian anxiety for edge of an is apparently). There marijuana it’s now ‘pot’ but I feel with. all I’m working a part of me about addiction but that’s just at my desk to type Trying sleep. I get enough when completely different days and the as – issue an is Posture bed. in than rather now sometimes Will become concave. front, move together in my shoulders pass, months try sitting on the yoga ball too. It might not sound like a cancer issue but it is, because I’ve been hunched over this laptop for months in bed. I hardly ever do – with Viradhamma at really doesn’t pedometer My yesterday. S. Lisa with Funston Fort and Rockaway Beach (Pacifica), work so haven’t been logging the miles, but I can feel them. Walked up to Bernal Hill today with Elaine, Lisa Kee and Lauren. Feldenkrais August 8: Tune-ups couple of days, in the morning and I’ve been feeling depressed the last talks those gave I general. in more complaining be to seem I night. at super- me makes almost It crash. then, is, all it enlightening how about going to be OK, or that everything stitious, like if you say everything’s low the about Something down. you strike will god/s the then OK, is the clarity. Reading that follows the high, the confusion that follows this morning. meditating was As helpful. was night book last Sumedho’s cancer have still I if make to decisions have will I that me to occurred It have to make those decisions. come November. I hope that I do not oncologists. I love Dr S but someone more consistent would be fab too. fab too. be would consistent more someone S but Dr I love oncologists. during be to seems always it and doctor, backup third my be will M (Dr the most.) doctor the same I want is when scan which some I How’d that happen? feeling guilty more. etc., I notice myself so much, it. guilty about slightly feel blastit I do dag but mind so much wouldn’t far away mostly in for next year – retreats, are cooking up Some plans yesterday Tarot reading very long. And my a couple of them places, and travel, healing, prosperity, cards suggesting of strong, positive had a lot potentially uber- So there. According to the strength and meditation. reliable has this meaning:

98 Crap, I’ve got cancer 99 These are not obstructions to enlightenment Being born as a human being is a real challenge in terms of how challenge in terms of how Being born as a human being is a real Flickering sensations of pain: stabbing, sore joints. The tension The joints. sore stabbing, pain: of sensations Flickering From Ajahn Sumedho: I had a carne asada burrito for lunch. It’s not very healthy, don’t don’t healthy, not very It’s lunch. for burrito asada I had a carne Notice how irritating it is just to be able to see, hear, taste, smell and to see, hear, taste, smell and Notice how irritating it is just to be able isn’t quite right … Just consider touch. There’s always something that and thoughts. One can say how sensitive we are in relation to words a certain tone of voice … We things and upset everybody just through because of mistakes, fail- get a lot of guilt and remorse or self-aversion we remember … ures or unskilful acts in the past that experience, this sensitive state to use this experience of birth, human that we’re living in … It can be so utterly depressing that we think it’s better to kill ourselves. Or, as the Buddha encouraged us, we can wake up to it, learn from it, see it as an opportunity, as a challenge, as some- thing to learn from. We can develop wisdom in terms of the conditions and the experiences that we have in this life – which are not guaran- teed always to be the best. Many of us have had to experience all kinds of frustrations, disappointments, disillusionments and failures … Of course if we take that personally, we want to end it all very quickly. collects in my heart, like a sentry that gets called every time I start to time every called gets that sentry a like my heart, in collects off, then a small jolt in my chest. It relax. Lying in bed at night, drifting and unify myself, when it is not causes me to pay attention to my heart in my body, I feel utterly alone. dividing me. Sometimes with the changes my mouth. in sores I expected. No than energy more least I have at Still, drag me to that start predictions, usually I am vigilant about thoughts, we with Nancy, talking about how down. I had a great walk and chat of Tania. One with session and a reiki Misha, bodies. Then our deal with was that I am not alone. the session during that came to her the things guardians, protectors … She said she saw me surrounded by August 10: Bodily changingness August 10: Bodily sour and toxic body produces, liquid or solid, smell Substances that my and familiar so once at be can body my that strange It’s burn. and me, to so unfamiliar. I think: This is only the first half of it. What next? My lighten. Which my face. My eyebrows fall out and legs are numb, and beings tend to deal in itself. It’s just that human isn’t that big of a wear I unless else, something like look me makes it so eyebrows, have that I think of gets into and irritates my eyes (now makeup, which then to protect them). there are only a few eyelashes left it, probably because of hair as protection. I didn’t used to think this morning: all kinds of fleeting stabby achey feelings, and occasional occasional and feelings, achey stabby fleeting of kinds all morning: this are My feet or knees. hip joints or in my pelvis deep in my Mostly chills. my face. strangely, and, numb today, very over the to have gotten At least I seem I was thinking. know what bonbons over coconut Someone brought for the moment. sugar craving and there were cookies from Hawaii. I foot me an awesome Lisa Kee gave me. are bad for that things about love not feeling any conflict off, bliss … this afternoon and I drifted massage

. But if we put it in the context of knowing the world as the world, we we world, the as world the of knowing context the it in put if we But even the from to learn abilities have incredible We anything. can take are not These conditions. and nasty painful miserable, unfair and most them to we use is whether issue this enlightenment; to obstructions not awaken or A couple of days ago I wrote about how crap everything was. Most A couple of days ago I wrote about how crap everything was. Most There are at least two different approaches to illness and discom- different approaches to illness and two least are at There the to related perhaps is drug-taking pharmaceutical to approach My They had a party for August Yesterday’s pilates class was so fab. shot being am I While toxic. as myself of think to not ought really I August 16: Shaky trailer II aside from You have to fast today relaxing. Strangely, I found my scan of that has since changed. No more burning pee, and I’m sleeping much of that has since changed. No more burning pee, and I’m sleeping much 15%) (say still are face and feet My depressed. feeling not and better chemo a of end or middle the toward away week a plan to Need numb. cycle … sick of the city … August 12: Chemo dates changing was causing other hassles. I changed back to Fridays, because after the last one. I thought it was Plus I had a huge bruise on my hand Weds-Friday. worth sticking with C, who only works fort. One involves taking all the recommended drugs for each emerging for each emerging taking all the recommended drugs fort. One involves are the primary diet, acupuncture and exercise symptom. I feel that (yet). Of chemotherapy the by been devastated not have that I reason these days. I of that. My diet is not very strict course I can’t be certain spicy Thai food and no sugar. Yesterday I had very try to eat a lot of veg it seemed all right. (tofu and veg) and certainly She Adventist. Day Seventh a as up grew mom my that fact after 15 years of depression, resists prescription drugs. (For example, frustrating.) She says she which my sisters and I have found incredibly what I say. Of course when I say will work it out herself. This is exactly Maybe some people conceive of I will work it out … I actually do. Yes? of them as potentially solving prob- drugs as solving problems. I think Chip off the old block. I think this lems, and causing other problems. causes more, who knows). saves me a lot of trouble (but maybe was really fun. Also picked up my birthdays so I was crowned, etc. It Amy with Went week. this scan my of advance in drink I which barium Yerba Buena. It was great. to see David Shrigley’s exhibit at the things every three weeks, the toxins up with heavy metals among other my body is 99.99% functional. also weaken over the three weeks. And August 11: The influence of Seventh Day Adventists of Seventh Day The influence August 11: feel me make night at valerian and melatonin taking that think I depres- isolate factors with It is very hard to during the day. depressed depression, which anything for a few days, and the sion. I haven’t taken the during awake more felt have I gone. is body, my in strongly felt I the last few for an hour a day. Anyway, day. I’ve also been walking them. nights I’ve done without

100 Crap, I’ve got cancer 101 These are not obstructions to enlightenment Even though though Even The pilates class was great this morning. We walked to Japan morning. We walked to Japan The pilates class was great this There was a lady with a cane on the lift with me up to the trailer to the trailer with a cane on the lift with me up There was a lady After a ‘Castro Omelette’ breakfast at the Squat and Gobble in the You have to lie completely still – very comfortable – on the scan- the on – comfortable very – still completely lie to have You my above arms my having from hurting shoulders my than Other Town – about four blocks – and had lunch at Izumiya, then returned lunch at Izumiya, then returned Town – about four blocks – and had which was fab. Laura liked it. She to go to the monthly support group, about my mom. A couple suggested in the group that I say something calling not her about crabby feeling was I that noticed I ago weeks of years, if ever. I got in touch with me, which she has not done for many this longing for my mom to reach out to me, and I was getting more and more annoyed. I have been calling her once a week or so for many years. I didn’t so much feel like talking about it in the group, I feel to some degree at peace with it. I need to be aware of this longing, a longing that will probably never be satisfied by interacting with my mother, or people Many cancer. have I because mom’ a like ‘act to her expecting shared their feelings about their mothers. The case worker suggested other ways of being nurtured, for example, by being in nature. I was August 18: No scan results yet over looked I Center, the at ceremony (friendship) KM Dawn’s During I thought, Why on earth would I at some folks making offerings and people? ever want to leave this place, these (apparently people injure themselves on the stairs). She said last time She said last time injure themselves on the stairs). (apparently people she was fine, but she had gotten really bad neuropathy (numb feet) so know don’t side, the older of on She was sort well. walk as she couldn’t that bad … geez, I guess my neuropathy isn’t how old. I thought, seems, it and, it, enjoyed I Ness. 1000 Van at Total Recall saw we Haight, I haven’t Farrell is terribly hunky. anything post-apocalyptic. Plus Colin been eating at home at all, it’s probably In fact … had popcorn very bad. fake probably has that butter which at the theater with that super-fake had we and it did. (Thankfully fat stuff reputed to give one diarrhea, anything.) Probably radioactive been early for the movie so I didn’t miss stamina. astonished by my own but that might be TMI? I am diarrhea, the on I was like start to feel would I much do this I would past if the In a movie … But I feel fine. verge of a breakdown. Even going to it’s in this weird trailer in what seems to be some kind of San Francisco of San Francisco in what seems to be some kind it’s in this weird trailer trailer. Though sorry for the folks that work in that wind corridor. I am two days a week, paid well, and they only work in SF I’m sure they get they no doubt get to milder micro-climes. the rest of the time this nasty (not as bad bad as (not nasty this After drink. barium herbs) medicinal Chinese as for a room in alone sit still, you sugar, radioactive with up shot you get I think blood sugar. fasting your check and they yeah, Oh an hour. half wind. a bit from the The trailer shakes something like 58. mine was two first The times. three tube the through you moves which table, ning to go the sort of map scan which provides the CT AKA ‘Cat’ times are on minutes four spends it through, time third The scan. PET the with down your body. as it makes its way each area meditative. and relaxing amazingly was it long, so for head After looking it up I feel that it prob- it that feel I up it looking After if she’s cool with the acupuncture and herbs, herbs, and acupuncture the with cool she’s if scan shows that two of the small lung tumors have about lung tumors two of the small that PET scan shows I sent a thank you to Dr K for the info about my scan and he replied: about my scan and he replied: I sent a thank you to Dr K for the info Tong and I went for a walk up on Mount Davidson (with the big cross I was at UCSF hospital yesterday visiting a friend of Karunadakini’s a friend of Karunadakini’s I was at UCSF hospital yesterday visiting “You’re welcome. Best wishes going forward. Dr M is a very good doctor doctor good very a is M Dr forward. going wishes Best welcome. “You’re about Dr M, after as well.” I started off with kind of a bad feeling me the scan results until meeting hearing that she didn’t want to give had to wait a week for them. I hope me, even though that would mean I Among simple. most be would her to switching as person, in her like I ask to need I things other on it – you can see the hill but not the cross from Twin Peaks, weather the go to cold we had to abort and permitting) but it was so muddy and where knows who local a with about going nice It’s museum. Randall stuff is. (Tong grew up in San Francisco.) ably is. The main dietary guideline is not to eat sugar … hmm. Going is not to eat sugar … hmm. Going ably is. The main dietary guideline apple cider vinegar and probiotics. to try some home remedies like raw and see what they say. Will call the oncology nurses tomorrow as I feel that is important for me. August 20: Food diet, perhaps a veg-intensive whole grain vegan Ideally I would have with some sustainably-acquired fish. But I’m not doing that, at least it. Eliminating very sweet foods not all the time. I’m also not sweating is very good for me, and the rest is my main food project, and I feel that am exercise regime, which I my in spite of good enough. However it is of lately. inch an about grown has waist my from, benefitting and enjoying too much eating no doubt! I just Too much eating out combined with It felt great. had a pot of veg with seaweed and miso. I chat. great a had We myeloma. multiple for treated being is who “Dex” (short for dexamethasone, remember how fondly she spoke of mouth started hurting, mostly my the steroid). Since then my whole something at the hospital. A tongue. I was wondering if I had caught thrush. be could it if asked friend Preliminary scan results Preliminary The they are not to where ones have shrunk signal, but the other the same tumors. new no are There larger. any not are signal with two The visible. what to chemotherapy. I’m not sure been response there has Overall, on the scan? … I suppose it’s to do with brightness ‘with signal’ means my in all the tumors tumors anywhere, detected are no new there So, disappeared, lungs but two have the ones left are the same size they and larger than that the scan can only detect things Keeping in mind were. MRI?) it the is stuff, the smaller shows scan which 1cm (I forget around So worst case be there still, but too small to detect. the tumors could all … it’s good news way, – either smaller gotten have only that they still is interested in that because I usually think of nature-time in terms of of in terms nature-time of think I usually because that in interested feel that. I do it than more to there’s perhaps city. But sick of the being My sisters in my life. people and activities nurturing I have many that wonderful. have been

102 Crap, I’ve got cancer 103 These are not obstructions to enlightenment

And make sure I walk every day. It It day. every walk I sure make And today about dealing with insomnia. She said many with insomnia. She said many We asked Dr M today about dealing Thai a meeting, chapter great a – yesterday day mellow nice a had I She’s not as great! met with Dr M today. She was Paulette and I About the types of scans. The regular CT scan shows you the size So much of how well or badly I think I am doing is really just a a just really is doing am I think I badly or well how of much So August 23: People say I don’t seem tired People say I August 23: to (due today wrecked and yesterday, of most for tired really was I energetic how People continue to remark about 3:30am). waking up at or is it the Could the steroids still be functioning, I seem. Why is this? I don’t seem tired Last night I asked Po, So chemo, or the makeup?? It’s strange. now? She said no. or chemotherapy, it, but it is not from the steroids chemo patients have of weeks after these are functioning much a couple because neither of be that it is stress/thinking, to seems assumption the infusion. The main feel like my body that’s not the cause for me. I but I’m pretty clear She suggested no reason, or for no mental reason. just wakes up for alternate can I figure I else. anything for her ask didn’t I and Benadryl, melatonin and valerian (not in between Ativan, marijuana, Benadryl, it! cover oughta that and order) that that Karunadevi and Singhashri massage, and a lovely little dinner gift a and Kindle a me bought and in pitched folks of bunch A made. certificate from Amazon which I was exploring last He is making saw Woody Allen! I yeah, and Dayamudra and hours. Oh nightin the wee (20th and Lexington) and was a movie about a block away from here standing were folks Various someone. with chatting outside standing said lady A uncool. being without a glimpse get to trying on the corners she saw Cate Blanchett the day before. in the useful, was more she gave or funny as Dr S, but the info warm sense that I could understand it! She gave me a copy of the PET scan we talked for about 45 minutes. report and showed me images, and weighs who assistant medical the to mentioned I M, Dr meeting Before of lot a lose to you expect people that etc. pressure blood takes and me on chemotherapy. She said in so weight, have nausea, etc., when you’re many words that this is an outdated view. The main problem used to be nausea, people couldn’t eat, but there are now drugs to control nausea. of things. The PET scan shows glucose uptake/metabolic activity. Regarding size, the PET scans are harder to compare, because the next change for trials clinical In tumor. the of part different a hit may scan to be significant it has to be 25% or above. The reason I got a PET scan instead of a CT was to do with my pelvis more than my lungs. For just August 21: 49 today August 21: of days sleeping was bad, and on wasn’t lost on me that the last couple those days I didn’t do my 4k steps. comparison to someone else – without even knowing I’m doing it – it – doing I’m even knowing without else – someone to comparison than worse off seem people who or sick sick, who aren’t to people either could I wish just I is. it what exactly always is health my yet, And am. I and for all … point of view once sort out my The long and short of it is, because the tumors started started tumors the because is, it of short and long The C takes his time putting the needle in my hand. He wraps a heating heating a wraps He hand. my in needle the putting time his takes C After PT went down to the cafe to get us an egg salad sandwich, Griz I don’t think I explained the diff. between a PET and CAT scan very very scan CAT and PET a between diff. the explained I think don’t I the Norwegian The Blair Witch Finally, don’t watch Troll Hunter, The actual scan. There is one detectable nodule remaining in each each remaining in one detectable nodule scan. There is The actual pad around my forearm for around ten minutes, touches the vein and and touches the vein minutes, ten around for my forearm around pad follows it with his finger a few times (not sure what he’s doing there!), taps the vein. He’s very slow and methodical which I really appreciate. Others just stick the needle in. yelledwho nurse, alarmed the to according and, chair his in over slumped August 25: Chemo IV with a dramatic interlude August 25: Chemo IV with a dramatic didn’t bring the whole house of food, Chemo today with Padmatara. We proud. Unlike what you might movies, electronics and books. We were to it, or at least not dreading it, expect, I was kind of looking forward wasn’t There chemo. with done halfway than more now am I because up in the group room with just a private room available, so we ended some point she left and Griz and one other person who was asleep. At and referred to himself as “an old his wife came in. He was a big guy, then but first, at across, come I’ve patient friendliest the was He hippy”. a movie watched much. We talk didn’t he and in kicked Benadryl his (Son of the Bride, Argentina, it was pretty good). August 24: Answer to my last question August 24: Answer healthy- how at shocked are people wig, a and makeup wear I When eyebrow an Got much. so not don’t, I When am. I energetic and looking in fill to want I sure not I’m But today. Dawn and Dhivajri from tutorial than I do. Oh, It makes people think I feel better the eyebrows anymore. and I found out that “Steam Punk” is a thing. I do not have my finger not even pointing culture, apparently. It’s on the pulse of contemporary to the pulse. well. Suffice it to say, one means domesticated animals in general, and the other is a specific kind. Chemo tomorrow. I’ll be done in six weeks. Mexico for the retreat that starts I suddenly thought I’d like to go to her if that seems reasonable. Why November 1. I wrote to Dr M asking it if What later? horrible really be could chemo Because not? hell the Lanka with Kathy in December? isn’t? And maybe I should go to Sri is not as good as it sounds. Project, but with red-eyed trolls. It off so small and because of the nature of the particular scan I got, things things scan I got, the nature of the particular and because of off so small is therapy the So, K. Dr from coming sounded they as definite as aren’t are other potential It occurred to me again that there probably working. end of the chemo, “I have/don’t have cancer.” At the scenarios besides … tumors – ones that aren’t growing there could still be my lungs, a diagnostic CT scan would have been better. (The CT scan scan CT (The better. been have would scan CT diagnostic a lungs, my The not diagnostic.) kind – it’s different scan is a the PET goes with that . soft tissue area, often at a specific look is for a detailed MRI section of probably a little see what was also said she could lung. She cigarettes lungs. (I smoked of one of my toward the bottom emphysema time.) long a for

104 Crap, I’ve got cancer 105 These are not obstructions to enlightenment So many pills and potions today. Glutamine powder (for neuro- I looked outside the door and Griz’s wife was standing there looking looking there standing was wife Griz’s and door the outside looked I Once the burly guys (paramedics and the fire department) showed putting a lot of needles in my Acupuncture was great. Misha’s been mixed with water 3x/day, ten or so herb pills taken not with food pathy) mixed with water 3x/day, ten or so herb pills taken not with food 3x/day, dex and zofran in the morning, and zofran in the evening. The last two have to be taken with food or they will give you a stomach ache, August 26: Pills and potions life strange? Is there anyone who My life is so strange. Is everyone’s “Yes, my life is perfectly normal”? can say, with any degree of sincerity, I’ve that only it’s that, say can who people of plenty are there Perhaps fallen in with the wrong crowd. Of course I’ve been abnormal for so long, might be mincing things. Not normal looks rather suffocating. But I sure if I’m talking about cancer anymore … “Help!”, stopped breathing. He had no pulse. Suddenly four more peoplemore four Suddenly pulse. no had He breathing. stopped “Help!”, who haven’t of you to those Apologies and Dr M. C including appeared, is my It it frequently. I refer to feel that I Nurse Jackie. the show seen this difference The hospitals. of that, it call may I if experience, main courseOf emergency. an in are show the on folks the calm how was time super stressed room. But Dr M seemed is an emergency their context the infusion center. thing very often in see this kind of out. They don’t few long eyes met for a sad. Our welled-up freaked out and completely closed the curtain led her out of the room. They moments, then someone people closest to I, so all I could see was the feet of the between Griz and we need to get said several times, “He’s not breathing, the curtain. Dr M him on the floor” [for CPR]. At that point, there were only two diminu- they no way was a huge guy, so there was he and women there tive could move him. Then they couldn’t find the epinephrine! (Apparently it back.) put week before and someone hadn’t the there had been a drill Then they couldn’t find the mask that went with the oxygen bag. I’m writing this. They would be very unhappy that I am sure their lawyers very quickly! did find the stuff he started breathing again. All up, they gave him epinephrine and “What’s his name?” “Griz”. “Mr. these different voices kept saying, you are?” Griz’s nurse: “Miller, his Griz, you’re OK, do you know where you hear me?” He was still very last name is Miller.” “Mr Miller, can the then and minutes 20 about in over all was It Benadryl. from groggy (Dr M, another doctor, C, and room was empty. Four different people up to me at various times after someone else I can’t remember) came side other the on alone was I OK. was I if asked and over was crisis the in my eyes. I felt calm, but I was of the curtain with tears welling up stress, and Griz being pretty much listening to an enormous amount of for the things they needed to dead for a while and the nurses searching back PT let wouldn’t they Apparently upsetting. of kind was him help anyway). Someone then went in (there was no room for another person let her back in. out and told her what happened and through my feet, and I went feet, which sends all this energy pulsing into a very deep sleep. - This time, the exam was not painful and he said there is no no is there said he and painful not was exam the time, This So now there’s just my lungs. I’m going to drive up to Seattle with Tong and fly back Thursday. There’s also the burning mugwort (not to be confused with Hogwarts) Hogwarts) with confused be to (not mugwort burning the also There’s guilty about of I felt kind I noticed pot last night. I smoked some A note from Dr M I think it would be great for you to get away and have some nice vaca I think it would be great for you to get tions. You have chosen some interesting sites. Based on seeing you tions. You have chosen some interesting the trips sound very feasible once and the status of your cancer, I think the trips. If for medical reasons and that you should go ahead and book a letter for you (as well as any you are unable to go/fly, we can write to get your money back for the companion) that will typically allow you though, are harder and flights. Hotels, cruises and other arrangements, insurance. Have fun planning might justify purchasing some travel for the excitement associ- P.S. Again, I am sorry you had to be present FYI: The gentleman is doing ated with the treatment reaction. Just and called on Monday stating very well – left the ER after a few hours he felt fine. August 29: “A complete response to treatment” I had another gyn exam with Dr K today. I think my last exam was was exam the (and tissue scar some was there said he when June, in painful). scar tissue and I have had “a complete response” to treatment. In other words, there is no residual cancer, and it is unlikely to recur there. which also happens if I forget to take them. Then the more standard: standard: more the Then them. take to forget I if happens also which dexi- by caused constipation for Senna Complex. B oil, fish calcium, D3, tea Ginger that night. taking aid I am sleep whatever plus methasone, dosing out on probiotics, Green tea. I’m also and digestion. for fatigue less me feel a lot better, eating, which makes an hour before ideally half alcohol, no processed food, a little stevia, added sugar except weird. No of to only word I can think … Sometimes the green tea) caffeine (except - some with up come to out spaced too I Am ‘weird’. is feel I how describe point. isn’t a reference perhaps there just articulate? Or thing more my hips and the dealing with the tightness in stick, yoga ball exercises, walking at least shoulders, keeping my feet warm, hunchedness of my - acupunc juggling, appointment medical Support groups, day. a hour an track of all the yoga I’m not doing. Keeping ture, pilates, feldenkrais, things to wear on keeping them stocked. And the pills and supplies, … Anyway. caps, scarves, scarf-tying techniques my head: wigs, wig My pill and potion regimen is most intensive the first couple time. Lethargy both tired and not-tired at the same after chemo. I am of days the inside, mania Lethargy/fatigue mostly stays on married to mania. comes out. The routine changes after four days, ten days, and fifteen spreadsheet. days. I have it all written up on a complicated It it also makes me feel even weirder. though me sleep, it, but it helps the stoned world I lived in worlds: makes me feel like I am occupying two 49-year-old world, of my current when I was a teenager within the shell each moment of my life. coping in different ways with having cancer

106 Crap, I’ve got cancer 107 These are not obstructions to enlightenment But with men, it’s different now ... I experience them as men. Before A further irony is that along with this thirst is the conviction – yes I precept. anagarika the taking about thought sometimes I’ve years For situa- a into falling thing, same the doing keep to not determined am I There is a path from me to you that I am constantly looking for, so looking for, so me to you that I am constantly There is a path from and still as water does with the moon. I try to keep clear Rumi they were people first, and men somewhere in the second or third degree of observation. Now, through the emergence of some neediness, dark they’re and men, dusky and in single. is man the that an is requirement only The entirely love. their want somehow non-willed kind of very be will dynamic way, the though him, I to attracted be to have even not do I thirst, of expression salient most and new the is this So not. I’m if subtle in the Buddhist sense, in my life. think I can call it a conviction – that the nature of sexual relationships, at least for me, is dukkha, suffering. This means that even if I feel very happy, this way of relating to men, to whatever degree it is happening, gives a corresponding sense that I am embarking upon a path of pain. So there’s this slight movement inside me toward the thing I harbor the deepest suspicion of. I can do nothing about all the ironies watch and be amused. really but incompe- ultimately such have I because simply be it would did, I if But tent taste in men and figure, what is the point of carrying on? (Not that all my partners haven’t been lovely, just that I could not be happy with them for long.) Obviously I will need to resolve this degree, regardless of whether or not I decide to become an anagarika. question to some unknown by guided with, is it who or really, is, it what knowing not tion My relationship of the last seven years ended in October, has and changed drastically my since then. life Not how it looks or operates on the outside so much, but how it feels, how it looks, how it tastes. The main area that has changed is my experience of myself in people. Of course I felt sad at the ending of the relationship. But I think relation to other in general I feel more loving and open. More vulnerable really even. good. I It feel a lot feels of love for people. I wish it were more; I wish it were all the time. (Being loving all the time toward everyone including Buddhist practice.) myself is the essence of my interest in Me and other people: Love Me and other people: 4 February 2009 All of which might sound bleak. I am enjoying these realizations. I am noticing how much notions of self-view and self-worth are tied I know that pain cannot be what’s noticing just am avoided, I it. of more cause simply pain avoid to and attempts that much of the time our going on, which is to a large degree about my regards own to tangled-upness sexual relationships, in and noticing my subtle (I hope) needi- ness around some men. up with sexual relationships. I am noticing that these aren’t things I’m just are They me. on done being are they like more Seems do. to deciding around twirl they as loving and aware be to trying am I and happening, and inside me. The Brain that Changes Itself) (The Brain that Changes recently read I book A trash. samskaric said research has revealed that ‘falling in love’ and cocaine affect the brain in very similar ways, and in certain ways the neurally ending indistinguishable of from love drug is withdrawal. So I know all this, and I think I’m going to be sensible about it all, but then the hormones point some at up wake I and in, kick (endorphins?) are they whatever or of. out way my claw to trying I’m that myself for hole another dug having The determination not to do this again seems stronger now than it has in the past. But one never knows. In the face of some things I am quite helpless.

108 Crap, I’ve got cancer September 2012 The reason you have to face death Sept 25: Another example of what I don’t look like. 111 The reason you have to face death September 1: Hairless, by Jo Shapcott September 1: Hairless, The nature of the skin says not: Can the bald lie? erection-tender stuff, it’s newborn-pale, – pure knowledge, every thought visible, through the skull. mind in action – shining hairless absolute, cleaning. I saw one, a woman, floor, dusted bookshelves, She mopped the green Queen of the moon. all cloth and concentration, the bald, that the air You can tell, with their heads speaks to them differently, touches with exquisite expression. As she danced everything her laundry dance with the motes, scalp. she ever knew skittered under her her head, It was clear just from the texture of the sky; she was about to raise her arms to sing, roar, I covered my ears as she prepared to room. to let the big win resonate in the little Cancer is not only part of life, cancer is its own life. A friend wrote wrote own life. A friend life, cancer is its not only part of Cancer is OK, is life if So separately. affirmed or denied be can’t death and Life Why shouldn’t everything that interesting? Across is horrible also be Because of the sores in his mouth, the great poet struggles with a dumpling. His work has enlarged the world but the world is about to stop including him. He is the tower the world runs out of. Dean Young, from “Elegy on Toy Piano” September 2: The reason you have to face death face to have you reason 2: The September is to only alternative that the is to face death have reason you The and it, fighting you’re and cancer have you If fear. by down locked live option, Dying is not an I’m not going to die. “I just can’t die. thinking, You you cannot control. in fear of something you have to live NO!” then You have unreal. is what is real that pretend You have to hide. have to choice. life is an absolute that choosing you have a choice, to act like is simply an openness. choice life, but that we can choose It’s true that and am hearing taking a therapeutic yoga training to me recently: I’m to addition in stories, healing miraculous and wonderful of sorts all me of you when I heard one today that reminded practicing the tools. with woman older An body’. your fight to wanting ‘not about talked you basis. She told talk with her cancer on a regular cancer had a little it was simply too problem coexisting with it, but it that she had no that and too, die would it then died, she and over took it if and big, know you and shrink, to it asked regularly she So anyone. help wouldn’t no chemo, just alive and well years later, with the punch line! She’s this like I small! very staying are tumors that see to ups check regular her talks with cancer did not necessarily approach. (It’s also true that cause her recovery.) my glad I’m course Of oneself. for else, someone for Not … OK is death to die! But none of us has a choice friends and family do not want me either. It’s life’s choice. We can influence life. It’s all about the differ- ence between control and influence. I constantly mistake one back to not wanting to die. Social other. And trace it all, or much of it, the for love, want: we Everything on. hold to wanting everything, Losing death. stability or excitement. Symbols power, agency, prestige, talent, money, we use to control life … I saw two little mice lying on their sides on a the street from Misha’s, piece of paper on the pavement. How’d they get on the paper? (The piece on it. I looked it up and it said, of paper with the mice said ‘Catchmaster’ products”.) One of them was “Manufacturers of adhesive pest control paper with about moving this the way. I thought dead, the other was on better than be dead somewhere die or they could it so on poor mice these So them. I left so more them disturb that might seemed it but curb, the At least from awful. spite of what I wrote above, death is in I thought, of view of the dead, being covered the outside. I suppose from the point The time for concern no concern. is of blood or shit or lying on a curb with about dignity or appearance is over.

112 Crap, I’ve got cancer 113 The reason you have to face death I was lying there with all the needles in me, thinking about how I in me, thinking about how I I was lying there with all the needles that people tend to share their When I was in Seattle, I noticed Melissa told me about some studies done in Japan on ‘Forest ‘Forest on Japan in done studies some about me told Melissa might describe how it feels. It’s not easy because there isn’t anything easy because there isn’t anything might describe how it feels. It’s not more something there’s like it to. It’s energy, compare to of think I can energetic, it doesn’t make you want alive about one’s body. But it’s not get from, say, caffeine, or even to do something, not like energy you intense. I’m sure it doesn’t look meditation. It’s subtle but somehow gives It wonderful. feels certainly it though outside, the from wonderful of my body. Today, very me a completely different, joyful experience last the for missed I’ve which pilates, of instead bed to back Went tired. because I’ll be at chemo. The guilt two weeks, and will miss next week at noon. was subtle. I felt great when I got up he’s said me) than younger is (who friend My me. with problems health his how and remember, to able be to going he’s what about worried as people age they spend more and eyesight has gotten very bad. And – have I ones same the of many issues, health with dealing time more fatigue, memory loss, hair bowel issues, lady parts, insomnia, cancer, loss, and more … I did read about a study on exercise in middle age and how it can help (other people anyway!) The results show, in essence, to likely is someone that time” the “compresses fit physically being that - spend being debilitated during old age, leaving the earlier post-retire ment years free of serious illness and, at least potentially, imbued with a finer quality of life. By ‘exercise’ it doesn’t mean doing a marathon, but simply walking for half an hour a day. September 7: Needles in my face (yay!) September 7: Needles acupuncture. I’ve yesterday and went straight to Got back from Seattle well, only on the has gotten small sores on it as got a numb face which of one feet, my in and face my in needles of lots put Misha side. left Some table. the off jump practically me made in, it put she when which, them in but it’s the kind of pain I of them are painful when she puts (herpes shingles wasn’t thing face the hoped she said She mind. don’t I’m wondering now if zoster), which people can get from chemotherapy. much sun in Seattle. It was sunny it might be simply from getting too and hot and I went for many long walks. September 4: Seattle (chemo day 12 of 21) of 12 day (chemo 4: Seattle September I was super-tired yesterday, which landed within the five days of my walk of a longer-than-usual because could be Also nadir’. ‘immunity My friend sleep a bit more. side, I am able to On the positive yesterday. secret? his What’s imaginable. futon guest comfy most the has Oscar sunny really been it’s … here people few a with together gotten I’ve most the of case a have Debbie and Oscar weather. perfect mild, and ripe peaches. delightfully had a 50-percent took two-hour walks in a forest bathing’: men who increase an found study Another cells. killer natural of levels in spike phytoncides to exposed women in week a lasted that cells blood white in get to feel, I how than other motivation, more is there So air. forest in often. out of the city fairly Some of my fillings are ancient, so Some of my fillings are ancient, so ’Cuz in this life/possible dream I’ve been feeling a lot of fatigue and been feeling a lot of fatigue and ’Cuz in this life/possible dream I’ve In general, I’m feeling hella bored with cancer. Ten months! In general, I’m feeling hella bored with Two anecdotes: as ‘young’. with Dr K, he referred to me, again, At my last exam anxiety if asks who doctor, her visits pains stomach with Someone September 12: The doc’s point of view Dr M is my main oncologist now. Manner-wise, she’s uptight compared to Dr S. But I guess being entertaining probably isn’t the main thing one should look for in a doctor. In any case Padmatara noted that I have improved whatever the patient side of bedside manner is. Well. She didn’t say improved. She said “more assertive and clear,” I think. craving, and ate four – or was it six? – very dreamy Dilettante dark – very dreamy Dilettante dark craving, and ate four – or was it six? a bar of Seattle Chocolates Dark ganache chocolates. Yesterday half Chocolate Coconut Macaroon Truffle with brought them back from Seattle, was planning on giving them away … Sea Salt. Having Mmm. September 11: A toothless dream? part Foods, Whole at folks fine the to $140 giving from home way the On I didn’t even know it until of one of my back teeth fell out, painlessly. According to a random internet I felt the gap in the back of my mouth. molar, or you may simply call it “15”, tooth map, it’s my upper left second I’ll talk to Dr M about it tomorrow. kind of like Agent 99 on Get Smart. some problem with getting dental I seem to remember that there is work while you’re on chemotherapy. unless it’s somehow it’s not necessarily related to cancer/chemotherapy, of my face’ syndrome. Or maybe related to the ‘weirdly numb left side all my teeth fall out. Perhaps it’s part of one of those dreams in which be awesome. I’ll wake up some time soon, that’d September 10: Countdown days from 24 anyway, is session, for this round last chemotherapy My the at talk a giving time fab a Had Friday.) this is (Penultimate today. What lovely guys. It’s one thing to Gay Buddhist Fellowship on Sunday. give a talk that people find useful, or moving or whatever. At this talk, that was. I felt people’s hearts open, how delightful September 9: My disease sounds bad sounds disease 9: My September - develop been positive have But there Vagina”. of the 4b Cancer “Stage (‘rapid metastatic have I Currently diagnosis. initial the since ments left side of numb feet, numb plus insomnia, in my lungs, transit’) cancer looked), we time (last count cell blood immunity/white low slightly face, diarrhea with tissues’) body of (‘constriction constipation alternating (‘flow through’), and alopecia(‘fox mange’). I also have the vitality for a dialoguing amount of perambulation, fair with fidus Achates, disease notifications. and inscribing these management, and symptom other your to compared young me makes exactly what “So asked, I not 85.” not 70?” He said, “No, that you’re patients, that I am afraid of dying of The patient says, “Well, I am might be the cause. cancer.” replies, “We’re all going to die of cancer.” The doctor

114 Crap, I’ve got cancer 115 The reason you have to face death I have been very tired since we got back and have done the thing thing the done have and back got we since tired very been I have of Instead sex). (or sleeping for bed one’s reserve to supposed is One M assured me appointment tomorrow at 5:30. Dr I have a dentist’s to talk oncologist, I wanted my primary Dr M as Before switching to about herbs, etc., was skeptical doctors being I had thought that Here are a few other things I talked to Dr M about: Neuropathy – – Neuropathy about: M Dr to talked I things other few a are Here September 15: Optimism on steroids I got a ‘resin composite’ temporary filling yesterday – a layer of acid to help with bonding, a layer of bonding, and a slightly colored top mild layer, with no anesthetic. It hurt a bit, that searing, nervy coldness you can feel only in your teeth at the dentist, and it is only at the dentist you when mouth your of inside the of part any move mustn’t you that that a person with sleep issues is advised not to do (in fact was advised was advised do (in fact not to is advised issues with sleep a person that have would past I In the … six hours. for in bed lie do): to not today or – habits sleeping my because But up. gotten then and asleep fallen bed for a I can lie in drastically changed, capacities? – have are they is good. Still, resting without falling asleep. long time the and watched into my laptop my new JLab speaker both, I plugged a lot to be accumulating Galactica. I seem 2 of Battlestar end of episode essays. old, a collection of sweet getting is half of This of gadgets. I read Francisco and is a by Peter Coyote, who lives in San I listened to a talk with kale, potatoes and goat’s cheese. Zen priest. I ate chili that you don’t in such a case is good. It’s just that going to a dentist during chemo. to schedule your regular checkups necessarily want that’s says (She germs. own your to yourself exposing of issue an It’s germs come from, not other people.) usually where the The bad! that isn’t it apparently worse, getting mine’s though even that the worse it pain and losing balance. She said danger signs are after chemo ends, in which case I is, the more likely it is to continue Misha sticks a needle in them. am screwed. My feet don’t hurt unless down stairs. But I do sort of worry I just need to be careful of hurrying disabled being is much, pretty worry, one My neuropathy. the about that I am repeating myself, after treatment. (I suspect fairly regularly mine, then we’re golden.) but if your memory isn’t better than isn’t going she sure and make medicine her about complementary to to protest. When I first brought it up she was somewhat skeptical. She for problems caused by herbs. After mentioned being blamed by patients in studies at UCSF and checks the I told her that Misha participates to relax, and said if it’s worked interactions very carefully, she seemed for me for this long it’s probably fine. today but school, medical in up pick they prejudice of kind some simply experience of people taking it seemed to be more about her practical interactions), and about causing herbs adding work for her (to check which the prescriber perhaps bad interactions with the chemotherapy told her I also acupuncturist. typical understand. Misha is not a doesn’t my blood counts have been so that Misha is convinced that the reason Marrow Plus, an idea she seemed high is due to an herbal blend called receptive to. Apparently Apparently my tongue had been flying all This morning, my alarm clock did not make any noise, so I randomly so I randomly alarm clock did not make any noise, This morning, my and I decided center on my own today. Julie is sick I’m in the infusion had been diag- Pasadini, who Yesterday I had a Skype call with about white blood cell counts. The nurse gave me some more detail feel it. I think when he was doing the acid, he told me not to move my my to move not me told he acid, the doing he was when I think it. feel tongue, which was difficult. to get leave to to supposed was before I ten minutes 8:35, at up woke rally the various more than ten minutes just to chemo. It takes me like being late I have going these days. I don’t aspects of pretend-hair for appointments. on various things on my own so I could catch up to use the hours here in my laptop or in the group room, mostly buried I need to write. I’m men, except one other patients are primarily older a magazine. The room. That’s one her friend just went to the private woman, ah, she and replaced them someone with me! The woman who advantage of having coming up, so it’s not all oldsters, mentioned that her 50th birthday is the definition of oldsters being, of course, older than my current age. for which she got radia- She has multiple myeloma in her mouth/teeth, tion, horrible! that very day. She’s a good friend thyroid cancer on nosed with follicular cancer with to someone about talking something anyway, but there’s hasn’t talked to an oncologist yet; that is additionally satisfying. She I hope to have the lump removed … need surgery only will possibly she actual the than heavier far is ‘meme’ cancer that the me to seems It so. have often people?) people, unhealthier But people (older experience. always is effects side of severity that the think I I. than trouble more bad you imagine it to be. I to how going to be relative, to some degree, I was in a lot of For several weeks thought I was going to be deathly ill. I have many and outside and in, pelvis burnt pain from having my entire too severe. In this nothing round, side effects, but so far, especially this If you don’t have money/medical insurance. is the biggest issue country ruin. – of kind other no if – financial it’s insurance, shitty have you or it, The five different kinds of white immature, so they bode well for the maturity. Neutrophils are the most blood cells correspond tolevels of future! But my overall white blood cell counts dropped a lot in three - weeks. If the “absolute white blood cell count,” calculated by an algo rithm using total white cell count and neutrophils, is less than 1.5, they usually postpone chemotherapy. Mine is 1.4, dang (but of course Dr M said I could go ahead, which is why I am here, yay!) So I’ll be giving (hope- bone-crusher the time, this (Nupogen) shots daily the myself fully not), to help with blood counts. I might have to do it after my last chemo also. Last round, I kept wanting the treatment to be postponed. It’s so incredibly awkward having someone plumb the the plumb someone having awkward incredibly It’s so the place. over sounds, equipment, weird all that weird your mouth – with depths of and only thirty minutes, whole deal lasted pain. Anyway the smells and it has less sensitive than mouth feels way left side of my now the upper for a long time. I will need to get a crown eventually, by my man. He seems upset is a very sweet years. My dentist will last but this filling about it. to know nothing cancer, and

116 Crap, I’ve got cancer 117 The reason you have to face death However sick I am, I do not want to look look to want not do I am, I sick However “Cancer patient”. “Cancer Later Mary and I went to the Rigoletto simulcast at AT&T Park – – Park AT&T at simulcast Rigoletto the to went I and Mary Later products on two different web This morning I got ads for hair loss I smoked some weed tonight, which made me ravenously hungry me ravenously hungry which made some weed tonight, I smoked it was great, but hella cold – and I mentioned the conversation with I mentioned the conversation with it was great, but hella cold – and issues, agreed that she doesn’t Vicky. Mary, who also has some health too, the downside of being sick but want to look sick either (knowing, not looking sick … ) do with hair for quite a while, but I pages. I haven’t googled anything to have been talking about it … Has to be a coincidence, right? September 17: Sleep ‘n’ drugs of most week, last meeting our at tips sleeping some me gave M Dr in early day, caffeine the in early exercise doing: already am I which the day, drink warm milk, go to bed at same time every day, don’t take but this of guilty (definitely bed in etc., TV, watch or work do don’t naps, I have since moved my computer to the desk …) September 16: More on the subject of “looking sick” September 16: More with Vicky, for a forest bath in the Botanical Gardens Yesterday I went instructor yoga Iyengar an and Center Zen at over teacher a is who the wearing about asked she lunch At things!) other probably (and want to walk around with a head wig. I remember saying that I don’t screaming strangers. (Although not sick before opinionated, even concerned, some disadvantages. For example, looking sick when you are also has but healthy perfectly look you that jealous be to seeming someone to acupuncture or Feldenkrais somehow get to spend a lot of time going in some bad accidents and classes, etc.) She – having been involved – agreed that she doesn’t want to dealing with a lot of ongoing trouble that when she had shaved her head look sick either. She also mentioned lots of people on the street staring – part of Zen tradition – she noticed had she thinking doubt no look, shocked and concerned strangely a with cancer. My wigged head felt affirmed. This time, having reached my potentially penultimate chemotherapy chemotherapy penultimate potentially my reached having time, This I get so it happens, make sure to do to I need do whatever I will session, weeks! for three go to Mexico and to finish is not for a while, that to lay off the stuff So I’m going and not sleepy. marijuana to Singapore. me not to bring Kathy warned what I need. card, marijuana medical a across come they whenever Apparently they set it on fire. Putting together my upgraded bed, I was reflecting with tonight. I spoke with Kathy earlier conversation on my Skype optimism about this round of treatment, and my great ardor about either because of how odd it feels to be optimistic, outcomes. And about experienced having from perhaps or tendencies, nihilistic formerly my optimistic about much forced optimism. I feel very as an American too now. I wonder all this optimism is on steroids right Pasadini, too. And cancer, how many the US who get whatever kind of of all the people in cancer, from recover people many great A years? five within die them of isn’t the only one … Lance Armstrong a lot, lot, a I have since looked it up and seen that it is is it that seen and up it looked since have I

Dr M to go to sleep a few times. Dr M Smoking marijuana has allowed me I wonder if any of these things really apply to me? It’s not that I’m I’m that not It’s to me? apply really things of these any if I wonder by to Trazodone, recommended to me I asked her for a prescription Some background Californians first approved the use of medical marijuana for the seri- remains illegal under federal law ously ill in 1996. While marijuana store- view, same the take officials enforcement law and cities some and the state Legislature in 2003 and front collectives were approved by by then-Attorney General Jerry operate under guidelines published Brown in 2008. September 18: Swimming in a pharmaceutical soup I gave myself my first shot yesterday. It wasn’t hard to do, nor was it painful, but afterwards I felt like a bona Total Padmatara. with hill the up schlep hour’s a after improved Much fide, dazed cancer patient. today: 11,400 steps. Now I get to lie in bed! Two days after I fixed up my bed so I stop being too hot, I was freezing cold almost no matter how bought a heating pad today to blankets I had. I many piles and layers of wrap around my numb feet. said, as I suspected she would, that smoking a small amount isn’t going smoking a small amount isn’t going said, as I suspected she would, that also said most of her patients use to affect the tumors in my lungs. She want don’t I and it, smoke rather I’d But it. eat they and nausea, for it put it in. Last Tuesday night, no to eat brownies or whatever it is they ashes, and then I fell asleep. But pills, just a couple of puffs of mostly me at all sleepy, only ravenously last time, after chemo, it did not make it, recreationally speaking, for hungry, which is why I haven’t liked also part of what I didn’t like, but decades! Of course the lethargy was now I’d like only that part please. an anti-depressant that makes you sleepy. It’s supposed to be non-habit non-habit be to supposed It’s sleepy. you makes that anti-depressant an feel like I’m much seemed dubious about that. I don’t forming, but Dr M not narcotic/less but I’d prefer take something of a risk for addiction, I feel seems that other hand, it the day. On next me the affect to likely to take half? Even I take the Traz. Perhaps I’ll try sleepy the day after makes me feel depressed the next melatonin (10mg, kind of a big dose) day, so I have stopped taking it. not sleepy, I lie in bed very physically and mentally tired, get to the the to get tired, mentally and physically very bed in lie I sleepy, not either body my but asleep, be ordinarily would I which after just point of out and up slides often, more or, state asleep’ ‘almost the in stays without hours for down lie can I day, the during tired I’m If again. it to Dr M, new. According are entirely All these things falling asleep. insomnia, other causes that itself chemotherapy about there’s nothing couple other than the last feel stressed (well, stress. I don’t than mental slept I Jan/Feb, in treatment of round first my during Yet days!) of aid. sleep a as people two especially toward the end, ten or twelve or more hours. And before this this before And hours. more or twelve or ten end, the toward especially anymore, it enjoy even don’t I sleeper. champion a was I began, ordeal of kind It’s deep. very not or drug-induced usually it’s because possibly like a job now.

118 Crap, I’ve got cancer 119 The reason you have to face death skep-

these kind of trend-setting events have been infre- been have events trend-setting of kind these not remembering how I got there or what I had done. I I done. had I what or there got I how remembering not Dawn practiced some craniosacral on me last night. So relaxing, and me last night. So relaxing, and Dawn practiced some craniosacral on Padmatara came with me to Feldenkrais this morning and loved I’m not saying any of this has anything to do with cancer, and I’m I’m and cancer, with do to anything has this of any saying not I’m right to break free the earned I’ve “I think And from Susan Moon: I’m seriously considering not saying ‘dude’ anymore. On a crowded crowded a On anymore. ‘dude’ saying not considering seriously I’m had the thought at some point that I need to just go with it, that if all all if that it, with go just to need I that point some at thought the had this crazy shit was going to happen, there was no point in fighting it. kind of phase in and out of knowing And things got easier. But I would Finally, I went into a Tibetan gift that, and wake up in another place. counter if she’d be willing to help shop and asked the lady behind the was she first At around. wandering me see to happened she if me some- said she end the At release. and vibration – too energy, much so thing like that the left side of my body seemed less alive. This felt true to me, too. I should clarify that the night of having slept deeply is more likely due to the craniosacral than the Trazodone, which doesn’t work that reliably and, so far, makes me groggy the next day. it. She said it was like going on retreat, so true. It is a wonderful, subtly transformative mindfulness practice, and I keenly feel the change, almost a softening of the nerves, by the end of the class. At September 19: Subtle stress presumably the Traz is the reason Wonderful sleep last night, though dream, or sequence of deeply realistic vivid, for the astonishingly sensa- physical cancer-related exact the feeling remember I dreams. in conscious becoming or up waking kept I life. waking in have I tions place, new a still thinking it had tical, but then she agreed. I woke up disoriented, this time I had managed to land all happened (perhaps it had), but that wonderful feeling of having slept in my bed. Still, I had that rare and deeply. not saying it doesn’t. However, as even John Muir would have to agree, have to agree, However, as even John Muir would not saying it doesn’t. when we try to pick out anything by itself, we find it hitched to- every thing else in the universe. thinking.” from the imprisonment of sequential quent in my life. Still, fiftypercent of Wichita bankers are reported to Beach. Thanks, origins on surfboards in Newport have accents with derive entirely a second. Does my way of speaking Hollywood. But wait parroted have myself I Might 1976? circa California, Southern from I’ll see if it’s Simpsons and South Park? Still, maybe some of it from The day at a time … and saying like, just one possible to stop exaggerating tram the other day I listened to a couple of young white women talking talking white women of young a couple to day I listened the other tram they sounded is to say, Which idiots. frankly, like to me, sounding, next every if as hyperboles, and superlatives many So me. like lot a quite embrace happen. I used to thing ever to the most important feeling were know but I just don’t California idiom, roots in Southern my righteous hanging a grade when I started in the 7th It’s like the time anymore. around months within and earrings, hoop my of one from heart silver dangling without a heart was nary an earring School there Davis Middle Admittedly, it. from which made me tear up a few few a tear up me made which I skipped the pilates today though and stayed in bed watching a a watching bed in stayed and though today pilates the skipped I doesn’t lady One regulars. many as Not good. was group support The September 23: Grease head All right. I have identified that that was making me more shots I am giving myself. It’s the Trazodone my trouble is not coming every depressed and body, my of rest the in and guts my in lethargic, from the day. I wish I had gotten Ambien. At this point I don’t care about the potential addiction, and with other drugs I have taken, it is not an issue. better. so much feel I didn’t take it last night and already I Traz is crap. Neupogen and Trazodone both of effect side potential a is Constipation (the shots). That’s gotten a lot better, too. Today I developed a reddish bump on my forearm above my wrist. Folks thought it was probably a spider bite. I’m going to take some Benedryl tonight, see if that helps. the beginning of the class I am aware of the subtle stress – this sort of of sort this – stress subtle of the aware I am class the of beginning the the focus of end. The by the out that smooths my body – in jerkiness End Lands Then was fantastic. eyes. It of the softening was the lesson the shots to walk. I think to force myself though I have was exquisite, add, and if I might (just from walking) me motion sickness are giving more drugs to counteract I could take yet bowels to rock. turning my leftovers home and had drugs. So I came counteracting the the drugs on my new heating pad many hours with bed for and wrote in for dinner Alabama, Home Sweet Watched feet. my three things September 21: Only per day. things to pare down my calendar to three need I’ve decided I acupuncture, and Skype call with Pasadini, For example, yesterday: pilates Today: Julie. and Danamaya with Cinema Foreign at dinner and Skype call with Kathy. class, support group, movie, Walking Tall, recommended in a nonfiction book I am reading. book that Wayne the incarcerated ladies in my I must agree with Johnson, who hails from Hayward, is super fine. It was a good movie. or how many times, during My barometer for that is based on whether, That doesn’t work, or What a shitty the movie, I think, That’s dumb! or about a guy who always actor. It’s pretty much a violent vigilante movie ladies in the West Virginia prison does the right thing. (Apparently the didn’t care for Lost in Translation.) free gastric bypass surgery but have a stomach. (I almost said, Wow, on tumor a from speech slurred with guy new A it.) against decided walk to the bathroom and passing his tongue told us about trying to tracheotomy a with one including – women Two apartment. his in out and yet they attend this group – had been clear of cancer for six years, can you shot a is there that heard I And there. been I’ve time every times seven to opposed (as once only do you which counts blood for take might counts blood their that me to occurs It doing!) am I one the like of the kind of chemo they’re doing? have needed less of a boost because shots again after the next chemo, Anyway if it’s suggested I do the daily I’ll ask about it. times even though, or because, it was so sentimental. or because, it was so sentimental. times even though,

120 Crap, I’ve got cancer 121 The reason you have to face death For the last couple of days I’ve been feeling pretty healthy. Bowels feeling pretty healthy. Bowels For the last couple of days I’ve been In terms of media, last night I enjoyed The Reader with Kate Winslet I still have a lump just above (anterior to) my wrist. The swelling’s to) my wrist. The swelling’s I still have a lump just above (anterior I used to have oily hair. Now I have an oily head. Makes sense, sense, Makes head. oily an have I Now hair. oily have to used I seem to be embracing the Middle Way between the extremes of nihilism between the extremes of nihilism seem to be embracing the Middle Way replaced been have they like feel occasionally feet eternalism. My and but they don’t hurt, so far. I by padded 2x4s. They are very alien, 45 minutes at what is for me a walked to Misha’s today (takes about fairly brisk pace). The first while after chemo #5, probably because of in too, low were counts blood my because maybe drugs, other various addition to the specific issues I was having, I felt really weird, andI don’t any more. Shallower A Me Made Has and a cute German kid, and reading Cancer Person, again. It’s very good. I’m sorry its author and illustrator, Miriam Engelberg, did not survive. Before she died, did she think, Will people read my book some time in the future and be sad that I’m dead? I wonder. September 27: Round two slooooowly draws to a close September 27: Round two slooooowly near the end of and treatment, of end for the it’s common Apparently whatever treatment, to be hardest. Amen. Beneath everything, beneath I am doing, whatever I am saying, I am waiting, waiting to find out if the question, the waiting. These I still have cancer. It’s always there, cricket’s wings. days they’re rubbing together like a gone down and it hurts less, not sure I can be bothered to get it looked looked it get to bothered be can I sure not less, hurts it and down gone more challenging, so little real hair at. Daily eyebrow creation is getting ends up above the other and I left to guide the pencil. One sometimes Drawing symmetrical things has have to erase and start over again. always been challenging for me. September 25: An issue of bilateral symmetry 25: An issue September amazing graphic aid, after reading much of the Slept last night without Bechdel. Her angry, sad (ironic), by Alison memoir called Fun Home sad. Sad that my dreams … And I woke up feeling father appeared in in dealing with with cancer, and isolated in my body I am still dealing this morning to be happy about, too, but the feelings it. There is plenty it so much, but Fall in San Francisco. You don’t see were bittersweet. they’re tired. I’m it in your body, and everyone says you very much feel of the reason for tired as tired of. I wonder if part not feeling so much I Prozac. be could optimism and/or equanimity eternal apparently my (Actually these amount, and every other day, but still. take a very small to take it. Hence the sadness?) days I’m mostly forgetting doesn’t it? My head has a kind of muskiness that transfers to my head head to my transfers that of muskiness a kind head has it? My doesn’t head covers one-step to favor I seem I take precautions. unless covers sent me the one that Nora these days, like needs for around-the-house using the sent. I’m that Dhammagita and a few buffs from Hawaii, My head. my around them wrapping not but mostly too, scarves, pretty hasn’t changed. a bit numb, that face is still

We talked some about our teenage years, which were remarkably remarkably were which years, teenage our about some talked We at Relax Feet. Getting P.S. Got a massage yesterday up the street I have terminal cancer. I’ve never been in a relationship that was satisfying. I’ve never been in a positive about any of them. I can’t think of anything I mostly never see anyone I’m attracted to, except sometimes in movies. in except sometimes to, attracted I’m anyone see never mostly I similar, happening as they did at opposite ends of the country (Southern (Southern country the of ends opposite at did they as happening similar, the subject of my past relationships, Cal. and Maine). It seemed that on been feel I’ve that I not It’s say. to anything positive have I often don’t harsh. sounds It idiot. an been I’ve that just mostly misled, or abused There though. happened, has what it’s way; this feeling justify can’t I I miss sometimes. Anyway, even are things about relationships that kind topic this find I Cancer, of Blog Confessions True my is this though of embarrassing, so never mind. stressful, my body being unpre- a massage these days can be slightly the cancer because then I get a dictable, and I don’t tell them about was great, except the part where shitty massage. Anyway the massage the masseur rubbed off my eyebrows. For some reason, it isn’t nearly as funny writing this as it was saying it. as it was saying it. isn’t nearly as funny writing this For some reason, it a J and read it again? Maybe you could smoke September 28: Personals ad #2 ad Personals 28: September hours, many for talked and tonight together got I and Mike friend My a and smoked OK, for dinner. House to Thai and went on wigs, tried him for weed. I’ve known necessary of strictly medically small amount around twelve years and it was a first. Wewere talking aboutrelation- on some one topic). Based could focus on the extent that we ships (to start to following excellent put together the said, he things I apparently ad for me: a personals I thought for effect it would be good to add: it would be good to add: I thought for effect

122 Crap, I’ve got cancer 123 The reason you have to face death So one problem is being tricked into thinking a problem is coming Sometimes knowledge is unable to serve its function, it just tortures So there’s the suffering of, say, my 78 year old mom, who is angry The most basic suffering perhaps is that, again and again and The human body at peace with itself peace with itself The human body at the rarest gem. is more precious than from outside. For example, my partner drives me bonkers. (Or dating. Or Or dating. (Or bonkers. me drives partner my example, For outside. from not dating.) Or something like what happened recently, a waiter spilled know to suffering of kind another It’s leg. my on dressing salad of) lot (a drive the lack to and that see to outside, be cannot cause primary the that or discipline to act on that knowledge. your life, your of core the with link cannot it it, with align cannot you you, soul says no. Then knowledge stays on the surface, making some experi- ences seem right and others wrong. It makes you want to do something with your life, improve things, be busy, tackle problems, gain insight. Or feel like you should. We build a castle of our desires – even spiritual ones – then lock ourselves inside it. that her brain is shutting down. There’s the suffering of having the seeing someone you love deny reality. There’s the suffering of witnessing life that you want but being somehow or at least occasionally unable to wrong. something there’s thinking of suffering the There’s it. within move There’s the suffering of looking around and feeling that you should be way our think compulsively to trying of suffering The happier. or happy, out of pain. aren’t There be. to supposed are they think we how not are things again, death, us, disappoint to supposed aren’t people lines, long be to supposed cancer, depression definitely shouldn’t happen. We get buyer’s remorse, we rationalize, we do things we think we shouldn’t to and ourselves then or explain others why ... focused internally or ourselves externally. why things We don’t tell match up. “I’ll start tomorrow.” “Traffic is So says the great 14th-century sage Tsong Khapa. But even if you know this, even if you know this with a large part of your heart, difficult,life at minimum,is sometimes. still It seems that we often don’t want to be at peace, or we can’t, either because our inside world or the outside world will not let us. However, if you look at the ‘outside obstacles’ for ones behind them. long enough, you might find internal Embracing Suffering 29 July 2011 The thing I come back to over and over again: Whatever is happening happening is Whatever again: over and over to back come I thing The It’s appropriate because it means we will stop fighting. Rather, we Because we want to relieve suffering, because we want to progress – A flower falls, though we love it; love it. and a weed grows, though we do not Dogen now is how things are. It might be painful, but it is not a mistake, not an accident. It’s life. The only appropriate response to how things are is an embrace. will accept and then in some way we move put down the toward sword, we take positive off the blinders change, and the many-colored but glasses and the veils. We shift the balance a things little are, more what we toward are, and what a little less toward what we simply wish them and ourselves to be. doesn’t mean there is anything wrong. We must act and change things from the foundation of ‘nothing is wrong’. And from that place we find body at peace with itself. – for at least that moment – the human bad – maybe there’s a football game.” “I could never do that.” We explain explain We that.” do never could “I game.” football a there’s maybe – bad blame, or deny. it’s OK to lie in this case. We justify, to our friend why the addiction, ultimate the is life of reality continuous the accepting Not dissonance. ultimate cognitive

124 Crap, I’ve got cancer October 2012 What can we ever really know?

127 What can we ever really know? I got some more info yesterday – nothing about prognosis of course – I got some more info yesterday – nothing about prognosis of course – My cancer staging has changed to “Metastatic Stage 4,” upgraded I went outside yesterday and today with just a scarf on my head. It my head. It with just a scarf on today and I went outside yesterday Your hair keeps the flow of mucus produced by your from head growing again after about a Seems like my hair is likely to start about how things will progress, and what Dr M thinks about it all. The about how things will progress, and what Dr M thinks about it all. The main thing is, she complimented my eyebrows. from “Stage 4b” (because now it involves only one organ, the lungs). My blood counts were better. Statistically, the odds that the cancer is, October 4: Prevalence have cancer, according to the Twelve million people in this country American Cancer Society. Around five million of thosehave breast or was I that of cancer kind the have them of or three Two cancer. prostate while me a It took vagina. the of cancer December: in diagnosed with cruel joke. But that’s gone now, like a be able to say that. It sounds to as treatment to well as responds lungs my in cancer the hope I and doesn’t chemotherapy hope I And did. bones pelvic bladder/ vagina/ my dead insomnia, of terms in – giving on keeps that gift the being up end nerves, and a loose cannon where there used to be bowels. was 90-something degrees (34C), way too hot for the rug. You don’t know know don’t You rug. the for hot too way (34C), degrees 90-something was For one thing, hair of your hair until you lose it. about half the functions your arms, every- on your skin – on your face, on softens the aging signs of the hair is gone and wrinkles where. You notice this when all or most world. outside the and skin your between buffer a is Hair out. shout naked. I remember reading The Your skin feels things more, it is truly Naked Ape when I was in high school. That’s me. It keeps particulates out of your constantly dripping out of your nose. lungs. Eyelashes keep crap out of eyelashes. have you pretends that eyelids your on put you crap the your eyes, including flakes from other than I, Robot, maybe, Eyebrows make you look like something even, a human being. another bought I meantime the In … mid-November maybe – month except a little darker and redder. wig, identical to the main one I have October 2: Functions of hair October 2: Functions how astonishing It’s people’s eyebrows. other at fascinated, I stare, better than they My eyebrows probably look much they move around. finger. my with hairspray some on dab I them, creating After have. ever eyebrows. hair pass as They so they last all day. It shellacs them down around, too. Maybe I move them Oct 17: Oct I got drawn before of view, My point news. the bad Back home, Karunadevi made It was a nice day, didn’t pick up the laptop or a book the

I have an appointment with her on October 22, so some time before before time some so 22, October on her with appointment an have I I have chemo tomorrow, which in one sense is too bad because my feet sense in one which I have chemo tomorrow, has been that, before any The chemo/drug routine before today I stopped taking prozac a couple of weeks ago. One less pill in my or will appear, elsewhere is high. That is to say, the chances of wiping wiping of chances the to say, is That is high. elsewhere appear, will or of advanced think why they low. That’s cell is cancer single out every It is recurrence. a chronic or rather, illness, as a chronic cancer stage back. it doesn’t, or it comes in many cases to go away, and not expected She away. go did mine if surprised be wouldn’t she said M Dr However, on the could have waited are so small, they my lung nodules also said very She seemed mean a long remission. doing it now might chemo, but cut She me. to comfort a was which issues, life of quality to in tuned drugs get before the chemo (steroid) I dexamethasone the intravenous before 4am. I’ll be able to sleep tomorrow night in half. Yay! Maybe if determine to able be will which lungs, my of scan CT a get will I then grown have they whether so, if and lungs, my in tumors still are there a full PET scan, the same. In about four months, or shrunk or stayed stays clear, of any size, anywhere. If everything which looks for cancer four months for a sure which kind) every three to I will get scans (not year or two. October 6: Smoothish sailing andwhile a in Bill seen hadn’t I at chemo. me with Bill were Laura and aboutis done (actual time were we in no time chat, and we had a great five hours). have come back to life, and my digestion seems to be working normally, working life, and my digestion seems to be have come back to too. Dr M advised anymore! I’m fairly energetic, and my face isn’t numb Sodium) against consti- Docusate (Colace or preemptive meds me to take something very different to me than it did means pation, a word which body your like to feeling an inconvenience formerly a year ago. That is, blog, this of name the Despite way. a torturous in down mostly shut has my but it’s part of it), of lack (or about shit talking like I don’t really be my last chemo ever? experience now, so there it is. Will tomorrow thatfeel didn’t while a for chemo last the was it that fact The time. whole infusion isn’t where things end. significant. I suppose it’s because the dexa- oral 8mg things, other among given was I chemotherapy, actual By request, today I received no methazone, and 20 mg intravenously. different experience, much oral, and 10 by infusion. It is a completely I was this time than last time. better. Kathy commented how different the buzz I usually have, that keeps I am very tired, but it is better than wrecked that at Misha’s I fell into me awake most of the night. I was so a deep asleep in less than five minutes. life feels good. I didn’t use an estrogen patch for a week, but the world flashes hot say people know (I week. a for reapplied I so again, up heated meno- medical is this And cancer. is so again, then but natural, are 1, the pause, so it’s not natural.) The further away I am from chemo day I better I sleep, even occasionally without pharmaceutical or herbal aid. or digest, to difficult too are they Sometimes herbs. the of tired even am Laura and I an excellent dinner and we watched a movie.

128 Crap, I’ve got cancer 129 What can we ever really know? Arrested Development Development Arrested and Peep Show of Peep each episode an Social Security requested a document from me – one I don’t have – – have don’t I one – me from document a Social Security requested I tried to figure out if my right headlight doesn’t work because of I started a third. I composed So having not completed those two tasks, occa- with numb turned feet my and me from drained energy The get they – have I symptoms same the have people of lot a know I I’ll take so I can sleep tonight. Now I am thinking of what substances October 8: Second half of today was crap 8: Second half of October for about a mile to Chloe’s (walking with Lo active morning After a fairly station), and attempting her to the train and back, and taking breakfast after- hardly move this off no longer, I could I decided to put a few tasks sleeping, eyes closed, not hours with my in bed for many noon. I lay then watched it is too much fiber, and there are so many of them. I’m supposed to take take to supposed I’m them. of many so are there and fiber, much too is it sick of drugs. I am so or one. do two but I often a day three times them October 10: Chemo lashes right of my the middle are 1-2-3-4-5-6-7-8 eyelashes clustered in There eyelid. This is chemotherapy. Feldenkrais this morning was good. All by and gentleness also was there but there, were soreness and pains the the end, some moments of happiness. so I called Social Security (a different part) today to try to get a copy of of copy a get to try to today part) different (a Security Social called I so it. Four or five times I listened to a message that said something like, super busy, so calls. Mondays and Tuesdays are “There are too many Wednesday on & 2pm 10am between call don’t also and then, call don’t through Friday.” another car. After the fusebox map seemed to be for a blown fuse, but pulling out around half of them, I couldn’t even find the right fuse for the one that works. Center in Illinois, requesting a letter to the National Personnel Records and France in 1963 to see if my mom’s medical records from Germany was a ‘drum she was given DES during her pregnancy. But then there print … On the positive side, I tried issue’ and only half the letter would … to do the things I’ve been putting off up occasionally. I feel completely sional needle-like pains. My guts cramp wiped out. drenched in sweat, slowing down, super tired but can’t sleep, they are hell, to going eyesight places, wrong the in growing or out falling hair spaced out. These are some typical digestion doesn’t work, aches, pains, blocks, of a human body building blocks, or shall we say breaking-down even to people younger than I, aging. Apparently it can happen quickly, I like healthy were I and cancer have didn’t I If cancer. have don’t who know this much about other people. thought I was a year ago, I wouldn’t and people tell me their problems, But now I’m Sick with a capital S mostly been blissfully free from my problems the likes of which I have entire life. I’m glad I know now. Ten mg of melatonin combined with Benadryl or something else sounds good. Heating pad on my feet, mmmm. and played Facebook Jeopardy. and played Facebook peach kernel pills, which which pills, kernel peach Others don’t seem to be interested in my complaints. complaints. my in interested be seem to don’t Others People have different responses to me complaining. Most people are are people Most complaining. me to responses different have People On Oct 18, at 11am, I will have a chest CT scan. I’ll find out, again, Today Misha asked, as she usually does, what day (since chemo) it is. it is. day (since chemo) usually does, what asked, as she Today Misha October 14: Navigating a shitty mood October 14: Navigating a shitty 24th Street this evening, up occurred to me as I walked Some things complaining been I’ve that me to occurred It pink. turn sky the watching linked somehow is This attitude. shittier a with generally lately, more in limbo land. It further occurred to frustration with waiting, with being The scan I will get only provides to me that there is nothing to wait for. infor- Any information. all like is it way, that In information. temporary one of the slow lessons of is now. This on light mation one gets sheds very little in the way of certainty, cancer. Slow for me anyway. There’s breakfast at Radish with Anushka, of 0’s and 1’s. This morning I had sneaky is Cancer last. doesn’t get you info The this. of me reminded who of life. and subtle, as are lots of other conditions thinking – whether they actually say it or not: Yeah, you have fucking sucks cancer because complaining, you’re right damn you’re cancer, I should have gotten it because I and you shouldn’t have gotten it. am a sickly bastard who does not take care of him- or herself. But you’re the one who got it, and you’ve had two rounds of treatment, you still don’t know what your status is, and all that sucks. Of course of it. sick you’re October 12: An optimistic thought have don’t I Wow, thought, I eyelashes, my counting of instead Today managed I matter. that for hair, toe Or cool. with, deal to moustache a reiki a had I Later morning. this class pilates/cancer Jane’s to go to I’m when feel I how to similar very great, was It Tania. from session is What scan. body a doing or Misha’s, at needles the with resting about a deeply nourishing healing? Who knows. But there’s something rest that seems to be part of it. whether the treatment worked for a particular area of my body. body. my area of for a particular worked treatment the whether no matter what optimism/ pessimism issue: Since Regarding the whole the even or forever, about anything mean doesn’t it shows, scan this next six months, the significance of it has waned, in my mind. It’s just I get in the next truly predictive are all the scans another step. What’s 5-10 years. immediately solved my digestive problem. She also suggested I see her her see I suggested She also problem. digestive my immediately solved I will do. the suffering does not abate, which twice next week if October 11: What is truly prognostic truly is What 11: October word to the Sanskrit related it is because prognosis the word I like what is of to knowledge referring were the Greeks whereas . But prajña (This knowledge. precedes what in interested were Buddhists come, to .) on the Heart Sutra Pine in his book is courtesy of Red knowledge left a Day 400. Laura only it was around Honestly, I thought It’s Day 7. another chemo. Perhaps a week since I had ago. It’s only been few days suffering a few days my Or not. But for I’ll be ship-shape. week and suggested she Anyway, eternal. be to seemed

130 Crap, I’ve got cancer 131 What can we ever really know? But one cannot I’ll find out the results of my I miss my hair, and am looking forward to its return, though I prob- I miss my hair, and am looking forward apply to regular life, too. It’s Cancer gives me lessons, all of which I had a chat today with B, who is a social worker in palliative care. It seems to me that there is no point in waiting. What can we ever we ever What can waiting. point in is no that there to me It seems in with his family Trebor, who is living I talked to This morning scan. It will be one milestone in the series of cancer-related milestones series of cancer-related milestones scan. It will be one milestone in the that structure the current configuration of my life. October 16: Hold your breath for nothing October 16: Hold your breath for still a bit numb, but who cares? It’s OMG I felt great today. My feet are There is nothing to wait for. And because I have decided to stop waiting. end-of-treat- the of cycle the broken have I Yeah! it. for wait to one no ment blues. On October 23, a at 11:30am, ably have at least another month before it even starts. All kindsa crap it even starts. All kindsa crap ably have at least another month before I lack the hair shield. Hair is is getting into my eyes and nose because awesome. me, because uncertainty, imper- just that they have been forced on folks the Like reality. into theory of out dropped death and manence, vs. the folks learning to meditate learning to meditate to reduce stress has told them their life is pretty because they are in jail, or a doctor much over. And there are also smaller deaths … Like one’s identity as a healthy person. Like the sense of oneself as productive. Like whoever you are when you have hair, you’re someone else, kind of, without it. – now right are they as things that assumption unconscious the Like health, or sickness – last forever. Basically for dying people, part of an advanced illness coordinated care so program, which I qualify for because of my staging (Stage 4). I felt What to recommend or get for your female pals with cancer What to recommend dark in turban” “sleek a got I ugly. is patients cancer for headgear Most you buy a Sleek Designer Headwear. It’s cute. If blue, from Jazz Up color plain a in one buying with start cancer, with pal your for Turban if it works for her. colors she tends to wear, and see that will match the created with room wigs and hats is they all seem to be The problem with space, or they’re if you don’t have hair there’s extra for hair in them, so work for someone that the Sleek Turban might not droopy. Point being in fill to something ‘em get could you Or mine. than smaller head a with how people do that, but no doubt the empty space with. I have no idea there’s some kind of gadget. is too much missed, even when hold one’s breath for milestones. There nothing is happening. Strangely, when people are sympathetic, I don’t notice as much that I I that as much notice I don’t sympathetic, are people when Strangely, am complaining. later being an imaginary moment for not Why resent this really know? moment? a long little girls in such I haven’t seen his a year. I’m sorry Berlin for time. Rosa turned five today and the other, Emma, is one. One thing ideal in you’re that realize can you sometimes how is about talked we things. the grousing is not really about external conditions, and that

physical healing. Lungs getting scanned tomorrow. scanned getting Lungs healing. physical , an excellent Dharma book about about book Dharma excellent an Out, Inside Suffering Turning P.S. I looked it up and I am in the ‘nadir’ part of the chemo cycle. ‘nadir’ part of the chemo cycle. P.S. I looked it up and I am in the I think a lot of the trouble I have had came from not being able to to from not being able I have had came lot of the trouble I think a From my experience with my own body and from observing other and from observing other From my experience with my own body that there is some biochemical people I teach, I have come to believe attempts to heal ourselves, concomitant of active, conscious, deliberate that seem to enable us to pick beginning with relaxation techniques of goal-oriented thoughts and up the body’s signals through the garble panic over our condition. Which seems a bit complicated. I guess what’s she’s saying is that (she (she that is saying she’s what’s guess I complicated. a bit seems Which relaxa- with begin which self-healing, at attempts conscious believes) by followed are tion, Shaman II Alan shaman. the Alan friend my see to went I ago weeks of couple A had said some things last time I saw him (June) that didn’t sit well with me, about various things including what caused the cancer that I have. This is one of the things I followed up with him and we had a great talk for about an hour and half. Alan has no interest in or faith in (or much knowledge of) science, genetics, etc. He said his views are what allow how different people have It’s interesting does. him to do the work he a ‘science’ or ‘spiritual’ orientation. I think I have a combination of both. there and things, to causes physical/biological purely are there think I Amen. suffering. Here is a section: October 17: Symptoms/nadir a walk to Stayed in bed much of the day but managed Very tired today. According Valley to give my regular donation. Whole Foods in Snowy mouth on the left, 1.8 miles roundtrip. A sore in my to Google maps it’s also numb off and of my facial symmetry, which is the problematic side Sacrum/hip away. gone have to seem pains stabbing but feet, Numb on. class Friday. And that’s about it, joints very sore, possibly from pilates for you. Today I was reading not too bad. I wish I had more philosophy of more - some her give to her, I spoke when worse feel to not sorry I was happy, things. a lot of different people with helps She it was cool. to do. But thing important What is list’: ‘the bucket take on had an interesting She to to and ways important, is what around planning with helps She me? about them. Awesome. communicate decisions, and make difficult haven’t something I the weekend, over wonderful naps two sleep. I took that time. I’m convinced like a very long to do in what feels been able it if know don’t I but day, my wrecks sleep to order in anything taking is mostly about than not sleeping does. And this wrecks my day more in pills the on down way cut I’ve Anyway aids. sleep non-prescription patch, so now meant I stopped using the estrogen general. Sadly this it again over a hot again, bummer. I started using the world is boiling temperature remains tropical. week ago but the

132 Crap, I’ve got cancer 133 What can we ever really know? I’m assuming that chemotherapy is what western medicine will have what western medicine will have I’m assuming that chemotherapy is It now seems much more likely At this point the prospects seem dire. I figured the reason I’ve been so tired and cravey is because of the I have a lot of respect for Alan in his vocation as a healer. Last time Last time a healer. as in his vocation for Alan respect a lot of I have Ms. Cullen – doing so the results of your CT as you have been I was surprised by are larger the CT suggests some of the nodules well. Unfortunately, for your a few new nodules. The report is attached and that there are next week. I you a paper copy when we meet review and I will given trip in prompt you to change your upcoming do not think this should in December/ We can discuss the pros/cons of travel October/November. January when we meet. M to offer at this point, which is crap. Well, if it works it’s not crap. Mine Well, if it works it’s not crap. Mine to offer at this point, which is crap. all. Come to think of it, what my seems not to have had any effect at body responded to so well in the first round of treatment was radiation (chemotherapy aspect was minor). permanent (as it were) parts of my that cancer and chemotherapy are get used to Presumably I’ll articulated, blows. life. Which, as already Not sure about that. I’m remem- the idea as I have everything else? someone who had lived for ten bering the social worker talking about gynecological cancer. And been years with some kind of advanced stage on chemotherapy the whole time. Yuck. info, I think back to December of chemotherapy. But in light of current crav- sugar crushing having was I diagnosed, first was I when year last ings, and a lot of fatigue. That was because of cancer. Maybe this time, too. Maybe it seems fairly normal to have sugar cravings, everyone has expe- have I others any than intense more are cravings these But them. cancer, related to be not it might that also true It’s my life. in rienced not may or may related to fatigue, which also be just Could knows? who be related to cancer. October 19: Rather shocking in an email today, Shit, that blows. As a friend excellently summed it up least of all, my oncologist and I. Everyone seems to be surprised. Not Will I go to Mexico on October 30? How do I want to spend my time? by Tuesday when I talk to the doc. It’s all up in the air now. I’ll decide Bad news She replied: about the results of my CT scan. I wrote to Dr M asking are also mental or karmic causes. It is difficult to determine causes, but but causes, determine to difficult is It causes. karmic or mental also are my favor! in working of conditions the types to get all I try be more the ball’ again and to ‘pick up I was more motivated I saw him of me. kind and supportive has been very what I eat. He careful about - a relaxation/visualiza guided me through and last time, he This time, very grateful and to me. I left feeling emailed the recording tion and deeply relaxed. Tenzin Palmo, who did a 12-year solitary retreat in a a in retreat solitary 12-year a did who Palmo, Tenzin I remember one spring when the snow melted and the cave became cave became when the snow melted and the I remember one spring I was feeling and soaking wet. I also had a cold. completely flooded what they and I was thinking, “They’re right extremely not well, wet caves. Who wants to live in this horrible said about living in and still horrible, it was cold and miserable place!” I was feeling “Are you still looking for snowing. And then I suddenly thought, Buddha say something about happiness in samsara? Didn’t [the] that, I suddenly thought, dukkha, suffering?” And when I thought matter. Samsara is dukkha “Yes, it doesn’t matter, it really doesn’t expect happiness? If happi- so it’s fine, there’s no problem. Why happiness isn’t there, what do ness is there, happiness is there; if matter!” When I felt that – it you expect anyway? It really doesn’t at all, it was really in my heart was something not just in the head hope and fear. We’re always – this whole weight just went away: somehow, we’re always hoping that everything will be pleasant moment the whole thing fearing that it won’t be. And in that This was an enormous dropped away, and it just didn’t matter. relief … mind My relief. that experiencing not am I that noticing been I’ve Based (Mindfulness MBSR teaches sick) you’re when (even well being I think I’ll go to Mexico. There’s an eight day retreat for women who’ve Jules came up last night and we watched two good movies: The The two good movies: and we watched up last night Jules came what Here’s cycles through ‘realistic’ hope- or fear-induced scenarios and plans, plans, and scenarios fear-induced or hope- ‘realistic’ through cycles like this, Sartre’s comment, “Hell creating suffering for itself. (On days another spins wheel The insane.) completely seems people”, other is in its pure state can be a great time and lands on Uncertainty, which relief. Or it sinks its teeth into my lungs. Stress Reduction) specifically for people with cancer. I found some of it boring, some of it good. I like the stories about the author’s own life dealing with cancer. In general, I can dig a good cancer memoir. It’s not as and maybe entertaining group, only more support in a like being useful in terms of practical information. requested ordination, on the theme of the “Mythic Context.” If it were any other theme I don’t think I’d go, but that one is right up my street. cave near a Tibetan village, said in an interview about my two best best two my about interview an in said village, Tibetan a near cave and Fear: friends/foes, Hope October 23: Random thoughts and questions and thoughts Random 23: October What’s Jones. Lee Tommy of skin the see and today mirror the in look I abnormal both tumor? They’re and a a nodule between the difference Tumere means ‘knot’. Nodus in Latin A nodule is smaller. swellings. swell.’ means ‘to about sweet documentary an excellent very funny, and Senna, Dictator, Egypt. want to visit Brazil. Ayrton Senna. I race car driver the Brazilian of weeks Two treatments? alternative about What I? do Or Norway. in India? … grass in Mexico? An Ayurvedic retreat veg. juice and wheat list (what is important) – What is on it? Or what? My bucket

134 Crap, I’ve got cancer 135 What can we ever really know? never gave a total detected number. In five The 8-10 nodules I talked about before were I think Dr Dr think I were before about talked I nodules 8-10 The at the time of my original treatment back in January I probably probably I January in back treatment original my of time the at I had thought that it wouldn’t be possible for me to get radiation I had thought that it wouldn’t be possible for me to get radiation I have a very rare type of cancer, type of cancer, since Day 1, I have a very rare As I have been told She’s going to take the time I’m in Mexico to figure something out. and grown have nodules the while lungs: my of condition the to As I went for a three or so mile walk with Tong in Tilden Park. It was was It Park. Tilden in Tong with walk so mile or three for a I went again, but apparently that depends on the body part. For the lungs again, but apparently that depends on the body part. For the lungs it would be fine, though she spoke of it in terms of “symptom control” more growing started example, for nodule, one If survival. than rather of shortness for: out look to symptoms. Symptoms causing and quickly breath, a cough, fatigue, or weight loss. I remember a main complaint doctor, a to go to moved was first I when year, last of November in back was fatigue. or six months the width of a nodule in my left lung grew about 3.1mm, about 3.1mm, grew lung left my in nodule of a or six months the width bigger ones. Dr M said, “There is a or 1/10 of an inch. This is one of the is a slow-growing cancer. (Misha huge amount of normal lung.” So this resistant to chemotherapy. Need to says slow-growing cancers are more cancer? The size of a small-cell ask about that.) What is a fast-growing weeks. lung cancer tumor could double in two about which data is scarce. My treatments so far have been based on been based on is scarce. My treatments so far have about which data or cervical – which cancers – uterine, ovarian, similar gynecological to me how (same cell type). She explained are also adenocarcinomas “plat- about me, something sense for I just got made the chemotherapy of how much to me just brought home cancers. It sensitive” gyn inum She also said game all this is for the oncologists. an educated guessing that was saying about that. Something I could barely understand what she tissue from the biopsy, looking about doing various tests on the original specifics the to listen most of the convo which was very for ‘markers’. Padmatara recorded to now right tired too am I but this, writing in handy do. Listening to the recording again about the kind of research she will seem to talk fast. However really helps in general though. Oncologists doctor and communicator she is. Danamaya commented what a good all still very small and seem to be there are more of them, they are small, and 3-4 that growing slowly. There are 3-4 nodules that are very see. to easy are October 24: (A bit) better news 24: (A bit) better October on up me dose to want she’d figuring was I M. Dr to talking great was It has she is, Fact December. in maybe possible, as soon as chemotherapy actual any have don’t I me, give to chemotherapy of kind what idea no breaks. of importance the knows she anyway and yet, symptoms cancer She says that no one knows or has anything definite onwhat will work for my type of cancer. lungs. already had micro metastases in my K’s guess; the scan reports beautiful. It felt good to walk on dirt rather than cement, but toward but toward cement, than on dirt rather to walk good It felt beautiful. tired. very got I and lot) a tripping (was numb very got toes my end the she that Before End. Lands at Lisa with today happened thing Same which was awesome. do some errands, helped me Dr M mentioned, in passing, “CyberKnife” treatment. It’s super- in passing, “CyberKnife” treatment. Dr M mentioned, I will get an x-ray in early December. (Apparently x-rays expose you you expose x-rays (Apparently December. early in x-ray an get I will the to gave I talk the of recording the to ago days few a Listening Palliative care It was a very good meeting today, very interesting. However, I don’t described the have the energy to write it all up. I will say that B - ‘marker’ mystery as genetic markers that can suggest or predict some one’s response to a particular chemotherapy. (That it won’t work at all, or which ones might be better for a particular person.) Misha and juice fasting and wasn’t taking the herbs as I told Misha I’d gotten discouraged growing are nodules the reason the be might herbs the said She much. about me doing a juice fast. She slowly. I asked her what she thought say no, but for me she thinks it’d said for 90% of her patients she would according to Traditional Chinese (It’s because my condition be all right. ‘deficient’ are people most whereas ‘heat’ and ‘excess’ involves Medicine She suggested I consider consulting and ‘cold’. Raw vegetables are cold.) Medicine near Chicago. Not with Dr A at his Center for Integrative be very expensive and don’t feel psyched about that just because it will confident that it would help. At least from the Western medical point of view it’s treatment for my specific cancer that about that than my oncologist presumably he doesn’t know any more is mysterythe and things that could be helpful. Just does. He might know some general not sure I need to go to Chicago for that. precise radiation, “a pain-free, non-surgical option for patients who option for patients who precise radiation, “a pain-free, non-surgical tumors, or who may be looking for have inoperable or surgically complex to look for clinical trials. Most an alternative to surgery”. I am starting I am not at all enthused about. of them seem to be for chemos, which radiation since promising, more much seems CyberKnife point this At for me, is such a crap shoot. worked so well already, and chemo, October 25: Cyberknife to seemed she S, Dr did As M. Dr with meeting the about more little A think they expect she saw I had two pals with me. I panic a bit when to be detained by random inane questions. The first thing she said was but this time quite a lot of time with me before that she had spent to, but then she minutes, she had a meeting to go she only had twenty friends are cool? don’t doctors just know that my stayed for forty. Why What about travel? Depends on on Depends about travel? scan.) What of a CT radiation the to 1/1000 and new drugs, trials for clinical for will be looking I feel. She how costs of plan will cover well. My health I look around as suggested (Phase 1 just determines Phase 2 trials. in U.S. based participating My near a support system. a location She suggested choosing dosage.) to choose require one most questionnaires showed that initial search of the options. type is not one type, and my cancer the cancer know don’t still I attitude! my changed completely Fellowship Gay I can still enjoy my life … what’s going to happen.

136 Crap, I’ve got cancer 137 What can we ever really know?

vague feeling that I am taking advantage of of advantage taking am I that feeling vague Must try not to fill in the blanks about what will It’s been three weeks + 1 day for the since my last chemotherapy. And We have all heard of the stories of people with cancer being grateful with cancer being grateful We have all heard of the stories of people is important. I read in your that they have been able to focus on what on your attitude while having blog of a friend who commended you had cancer, you were already cancer. The problem is that before you in the worst of times than anyone able to have a more positive attitude that because you already had I’ve known. You didn’t need cancer for What I see is the strengths you that. Maybe you see internal growth. my view from the cheap seats. already had serving you well. That is October 30: Crap. About. Cyberknife. I got a bummer email from Dr M (though I am glad to have the info!): I “You have too many lesions for Cyberknife to be a good option …” seems it when especially again, chemotherapy do can I like feel don’t so unlikely to work. I like the last line. Anyway, aside from horn blowing … I’m noticing from horn blowing … I’m noticing I like the last line. Anyway, aside how often when someone helps some things about my psychology. Like a get I way, some in me perhaps invulnerable. them – a very strong need to feel independent, my friend above says. It’s also true I often have a positive attitude, as Seems to be hard for me to accept that when I don’t, I feel that I should. my own sadness. happen or what I will do. That will be my practice for the next month. An email I got this morning last two nights I have been able to sleep, no problem. Yay! My feet are no able to sleep, I have been last two nights my hair is still falling out, and there are still numb (maybe a bit less), various other issues. Boooo! I’d love not to have any more chemotherapy. October 28: Hasta la vista, baby October 28: Hasta yesterday OC the to here down drove I Tuesday. on Mexico for leave I while listening to Wicked (although tape #11, which is when she meets Smith’s Patti to and then broken) tragically was last, at Dorothy life with Robert Mapplethorpe, Just memoir about her . The seven Kids hour drive south flewby. It’s nice to visit my dad and Chris in this big popular culture things, they are out of touch with house. Among other than I am. in different ways Online forums Online for forums online reading I’ve been plan, not my it was Though had to CyberKnife experienced who had folks everything Almost hours. usual’ there were ‘the woman mentioned it was positive. One say about the only One guy said say what they were. but she didn’t side effects can’t live in places they Many people he had was fatigue. side effect radia- pay for it. Then the insurance won’t apparently some get it, and why that’s think I angles, different these all from delivered gets tion to is being delivered When radiation tissue isn’t damaged. surrounding breathing. the tumor and moves with your lungs, the beam locks onto be true … Cool. Seems too good to Ode to Jacques Cousteau Ode to Jacques 16 February 2009 it’s hard to imagine dark days how we survived the before the internet. cousteau but we had jacques children, who brought us, just with him on his adventures who spoke english to us though it clearly tortured his throat. jacques cousteau was my pied piper. i am sinking with him down & down & down into a dark world where we will shine our lights.

138 Crap, I’ve got cancer November 2012 Heal thyself Nov 25: A dead pelican on Newport Beach (and me) Photo, Jeff Perrin 141 Heal thyself Kathy Kathy sitting in my little enclosed patio. enclosed little my in sitting

The retreat was wonderful. There were over 50 women, around half over 50 women, around half The retreat was wonderful. There were to chat with folks on the Trying to speak and understand Spanish tomorrow morning. Las cosas Heading for San Miguel de Allende November 13: The witch of the Mexico City Buddhist Center November 13: The witch of the Mexico like looks sorta it point this At awesome. is it back, growing is hair My pattern, but that’s OK, I’ll take it. weird white fuzz in a bald man’s hair Allende de Miguel San in I’m November 11: In Mexico, tuna is a fruit November 11: In Tecamachalco. in Maya’s and Lena at staying City, Mexico in am I last night! Georgian food (fried Maya made us the most amazing dinner and vegetarian sushi. eggplant rolled up with walnut paste) Mexican women, at a beautiful and from the US and Canada and half very felt I Chintámani. called state, Morelos in center retreat spacious it, welcome to tried I days. of couple first the easily, cried least at or sad, of Day the was retreat the of day first The year. this little so cried have I weepy to participate much. I very the Dead, which I love, but I felt too puja (ritual). much enjoyed leading a Vajrasattva (For events everything was trans- retreat was a bit frustrating for me. come back a bit. I have been told I lated.) By the end my Spanish had unfortunately I don’t know many have a good accent in Spanish, but tense. words and am trapped in the present como son. November 1: Alternative therapies (post from México D.F.) therapies (post from México November 1: Alternative time this during treatments alternative out seeking be I Should but obsess over rather than traveling? I can’t help “between treatments” something else others. But the retreat will give me this question, and and one day meantime I’ve had a lovely two nights to focus on. In the Dawn arrived tonight. here in Mexico City. And with Lena and Maya retreat. Lena, Dawn and I will head to the Tomorrow morning and I managed a Skype call last night. She was wondering why I’m and I managed a Skype call last night. She was wondering why I’m so anti-chemo (she didn’t put it that way). In case that is not clear to others: it is not that I am against getting more chemo per se, more work, to going was one last the not or whether idea no had they that an is It either. will one next the whether idea no have will they and educated craps shoot. And it’s not like you just go get a shot that may or may not work. Your veins get hooked up to an infusion machine for a total of about 30 hours, and the whole treatment (which I will remind five between took effects!) side cause than other anything do didn’t you, Having a great time writing here. I wish I were staying a couple staying a couple wish I were I great time writing here. Having a I have five full days here to focus on writing. It’s ideal conditions on the about the time I spent with Dayachandra I wanted to write they become cancerous? Did But if my cells are healthy, how did Kathy myself. heal to try to mind my use to motivated am I of weeks and I’d take some time to look around. I stayed at the public public the at stayed I around. look to time some take I’d and weeks of library all day yesterday and got a lot done. Well, I didn’t get a lot done, more or five for it on worked anyway, but me, for slow rather is writing hours. And had a burrito there for lunch, possibly the best I’ve ever had, and a nice salad with shredded raw beets. I know one is not supposed to eat raw veg here, but I am not cautious, that’s probably why I have cancer. (Joke. Broma.) November 15: Post from San Miguel other the all if So yay! preceptor, Dawn’s as yesterday approved was I Spain in May to ordain her. ducks get into a row, I’ll be flying to and six months. And you may have some of the side effects for the rest rest the for effects side the of some have may you And months. six and I if or when again start chemo want to M will guess Dr life. I of your even short, In bigger. get nodules the if and/or symptoms, getting start blows. ago, chemo still it was 25 years much better than though it’s work. When it doesn’t buy is the fresh food you bread, no veg, and the food. White except for awesome Eating the way to exact revenge. Montezuma as a used by stuff at I bought some was much easier! or at Maya’s food on retreat with hot green including carrots which I rinse a grocery this morning, tea. ago, I think her time I was in Mexico, over a decade retreat. I met her last Spanish more spoke I and English no spoke She then. Cecilia was name been always had we if as other each loved we Somehow now. do I than time was at the delighted to see each other. Last friends. We are always some English; the UK. Thankfully she had learned Order reunion in a lot of what she complete crap. Turns out she does my Spanish was of a shaman. We She seems to be something calls “energy therapy”. told She Spanglish! speak both now we conversation; wonderful a had revert to them ask To intelligent. are cells that cells, my to talk to me They are my friend. She also to their healthy state. They will respond. and a human body that I didn’t drew a diagram involving two triangles understand at all. kinds these Although choose? to get they do so, If them? hijack cancer to this kind of conversation, it’s how of questions are perhaps irrelevant sense makes that it on angle an have to need I it. help can’t I think, I my cells to breathe, to go back to to me. So I’ve been doing it. I ask do it also, from a distance. She breathing. Dayachandra said she would also said I would be all right … doctor the that virus a had son old year four her when time a mentioned her to put her hands on his knees didn’t understand. A friend advised revert to lungs my ask I too. that do I So Thyself. Heal silently, say and is a state of breathing, of transfer- to their natural healthy state, which Thyself. ring oxygen. I say, Heal Thyself, Heal

142 Crap, I’ve got cancer 143 Heal thyself

The taxi driver said they call San Miguel “Gringolandia” “Gringolandia” Miguel San call they said driver taxi The The link between thinness and longevity, and obesity and a shorter and obesity and a shorter The link between thinness and longevity, consideration in other lifespan, is concrete. Another important restriction have an addi- animal studies is that fat and protein Apparently, higher fat and tional effect on lengthening life span. production, speeds up higher protein intake promotes hormone of aging, and promotes reproductive readiness and other indicates excess protein intake the growth of certain tumors. For example, growth factor (ICF-1) levels, has been shown to raise insulin-like prostate and breast cancer. which are linked to higher rates of Should I stop saying my toes are numb? Perhaps I’ll let you know let you know my toes are numb? Perhaps I’ll Should I stop saying The notes reveal that some of these studies were around hormone hormone were around of these studies some The notes reveal that effects from the radiation are The last few days I’ve felt that the side November 18: Radiation redux? November 18: Radiation I am reading Eat to It makes sense. Well. Live by Dr Joel Furhman. your with concerned particularly are you if interesting be only may It health problems he mentions are health, or with losing weight. The diet’ (MAD) which I have not mostly a result of the ‘modern American problems other than cancer, but I had for a long time, and about health thought this was interesting: November 17: WAH-na-WAH-toe 17: November city. It was year old a 500 yesterday, Guanajuato trip to short day Did a like being in Spain, only with brighter colors, graffiti, mariachis, and food! Mexican Australian square an main In the writing. and quiet for good … but it’s woman gave me a flyer for an Indian restaurant, where I went to eat. sugar in said it had no from them. She some sprouted bread I bought I’ve had anything else it was better than it. Anyway it but I doubted lately. double wool socks whenever I can. if they’re ever not numb. I wear I walk down numbness is only noticeable when (Wondering if the help (don’t know if the glutamine that’s supposed to stairs.) Sadly I left effect the yesterday, blood shitting was Also, home. at does) actually it of eating little fiber on my irradiatedto include a kitchen. holiday will have guts … I think December my November 20: Cheeseball cancer movie I’m in the bigger upstairs room at my dad’s, watching a not-great but sensitive cancers (not what I have.) I have certainly been increasingly I have certainly been increasingly sensitive cancers (not what I have.) to say “caused” my cancer, but overweight, which I’m not prepared to get with the Fuhrman plan OTOH it couldn’t have helped. I want once I get back to my dad’s. stretch to try I when and sore, and tight very feel hips My re-emerging. them a bit, they hurt more later. I am also very tired the last few days. Is it from the food? Dr Fuhrman might say yes. Actually I think another factor might have been the writing, or at least, sitting still for hours at a time. Argo with Jules. I I Jules. with Argo Saw the excellent the Saw OK, time for bed. Getting up at 4:30am to drive home missing rush to drive home missing rush OK, time for bed. Getting up at 4:30am Today I got up early and drove to Banning to pick up my mom for my mom for and drove to Banning to pick up Today I got up early issues, aren’t there that not here, got I since energetic rather felt I’ve potential tumor-reducing the about some info me emailed Laura I was going to transcribe a bunch of quotes from Dr Fuhrman’s book, book, Dr Fuhrman’s bunch of quotes from to transcribe a I was going I was thinking about all the bad news I got arrived home this morning. I was thinking about all the bad news I got got I doctor new a to went I time Every ordeal. this of beginning the in November 27: How I am now Monday I didn’t count steps, was mostly driving, but probably there were very few. Also ate some crap food (popcorn, Trader Joe’s cheetos, it!) in sugar fake with stuff and hour in L.A … hour in L.A … November 25: Fuzzy and numb be will toes my that worry I improving. slowly is health My has passed since I had chemo- cold forever, but very little of forever I sleep well, just like I did before therapy, so maybe not. Wait and see. fuzzy with hair, but not in all all this came to pass. My head is getting my head. Like in the female side- the places that hair used to grow on burn area, there is nothing. Thanksgiving. She is doing well. She seems in good spirits and her her and spirits good in seems She well. doing is She Thanksgiving. down slowing is dad My is. sometimes it as bad as seem doesn’t memory a lot. a bit crabby today for some reason, but having energy is cool. I also felt days due to early morning duties. possibly from not meditating in three (virtually equivalent to Fresh Dinner tonight was at Souplantation a big salad with lots of different Choice in Northern California). I love veg (no bread, dessert or pasta!) trial for brain cancer at UCSD. It’s of cannabinoids. There’s a clinical interesting but I don’t feel hopeful about being able to find today. OK. Friends and 30 trial. Logged 8,000 steps on my pedometer a clinical Rock reruns or bed … November 21: Gramma’s squash pie November 21: Gramma’s Man with the watching a James Bond movie, The I’m at my dad’s Tattoo on Fantasy Currently the midget who played Golden Gun, 1974. I just made a Moore with bottles of champagne. Island is pelting Roger potatoes, some of potatoes. All I put in it is peeled huge pot of mashed them in, and garlic. Don’t tell anyone. the water I boiled cancer movie called Living Living called movie cancer Channel Hallmark tear-jerking nevertheless hair lose the only in movies patients that chemo notice Loud. Ever Out eyebrows. hair-based perfect They have head? on their again. The I’m a vegetarian Anyway, have the wherewithal. but don’t nutrition, related to of about 2,000 studies a summary book is basically program. nutritional and fruit intensive fresh vegetable and a suggested but not – especially fat and protein numerous links between He cites most am already avoiding – and disease. (I fat and protein only animal veg.) he suggests but not eating enough of the types of foods

144 Crap, I’ve got cancer 145 Heal thyself Just Just

I realized that this time it’s taken me several weeks to get used to to weeks to get used taken me several that this time it’s I realized I suppose in my life I have kept my distance from friends and family and family I have kept my distance from friends I suppose in my life so much love for him, more It’s funny lately how in dreams I have the news that the last round of chemotherapy didn’t work, and that the that the didn’t work, and of chemotherapy that the last round the news my in cancer the maybe now that and unknown, totally is forward way lungs will kill me. The odds of finding a clinical trial seem that I was is more real now. I said in the beginning prospect of my death slim. The not sure about that’s what was going to happen. I’m OK with dying if I’ll know when it happens. that now. I guess in some way. I remember telling someone years ago that the reason I I reason the that ago years someone telling remember I way. some in this to tied be to want didn’t I that was children have to want didn’t feel like having a a conscious philosophy. But I earth. Mostly it wasn’t me to be more full of question marks has caused kind of cancer that’s potentially being and feel more of the pain of connected with people, separated from them. the deal? Is it some early part of than I ever loved him in person. What’s that came from that relationship? myself? Am I dropping the jadedness Am I begging myself not to die? November 29: Lifeguard I had a very strong dream last night about my first husband Michael. An influence in the dreammust have been Patti Smith’s memoir Michael and I were young, in Kids, which ended with death and AIDS. had AIDS. The only thing about the a relationship, and he found out he non- In him not to die. begging crying, and is remember I really dream would do. It’s more human in some dream life, this is not something I way, more unrestrained. more bad news. First there’s a tumor, then it’s in the bladder, then it’s it’s then bladder, the in it’s then tumor, a there’s First news. bad more stage then it’s stage 2, then it’s bones, it’s in the then node(s), in lymph - treat about information no almost is there and 4b, stage it’s then 4, I’d disease, the of extent the about info new hear would I When ment. things It would pass, and or a few hours. for a few minutes, be shocked feel “normal”. would somehow So I ask that you bring attention to this area of your life. The deci- sion is not necessarily ‘do I become a vegetarian?’, but ‘how can I bring more awareness into eating?’ Do I eat meat when I could just as easily and happily make a vegetarian choice? How can I be more ethical and compassionate in the food I choose? Many people, because of the influence of the dairy industrythink that they cannot get enough protein without eating I suspect, animals. This is just a lie. Our diseases are diseases of affluence – obesity,heart diabetes, disease. All these have been linked with meat-eating. The cattle industry is also a large factor in climate change. It has been estimated from livestock. up to 20% of greenhouse gases come • If you love animals, the greatest single thing you can do for them is to stop eating them and supporting the industries that cruelly. treat them so • Everything that lives, with the exception of some very unhappy people to us for right it Is living. continue to wants lemmings, some maybe and to Or us? for necessity a not is it when life their of being another deprive corpora- multi-national huge a indeed or else, someone to money our give tion, depriving beings of their life? • Do you think you could slaughterhouse? continue eating example, for from, animals different totally as fish a or if cow a eating of think you We • visited a essentially the same? eating a dog. But aren’t these things Vegetarianism is a subject even I don’t particularly like. But I would like like would I But like. particularly don’t I even subject a is Vegetarianism to say the following: They are not brethren, they are not underlings. They are other nations, are other nations, they are not underlings. They They are not brethren, prisoners of the in the net of life and time, fellow caught with ourselves of the earth. splendor and travail Henry Beston If you love animals 30 September 2008

146 Crap, I’ve got cancer December 2012 Die while you are alive

149 Die while you are alive - - December 1: A Homecoming, by Wendell Berry December 1: A Homecoming, Two One faith is bondage. are free. In the trust shows of old love, cultivation a dark graceful wilderness at its heart. Wild we roam in that wilderness, faith, the distances of our safe beyond the bounds of what we know. O love, open. Show me my country. Take me home. ing a Sunday wander around the neighbor around Sunday wander ing a warm. wonderfully which was hood, April 28: 28: April dur with Daya-mudra a nice photo Here’s I I to go through this because easier to go through this because Going back to Mike’s question: Is it Here’s my email version of a “disease elevator speech”. Everyone My friend Mike asked me, “Do you think it’s easier to go through this go through this me, “Do you think it’s easier to My friend Mike asked r r do whateve dead, then and be absolutely are alive you Die while you want. Bunan Zen Master I actually want to die (or at least because I have spent a fair amount of I have spent a fair amount of I actually want to die (or at least because time wanting to die?) Probably. And in ways not related to depression it let to ready length, arm’s at life kept somehow have I suicide, and unable to fully embrace life. And I go. I have been jaded in some way, life – my taking or leaving of life – always thought of my resistance to part the now But decision. my being as consciously, not probably again, because life, now, is obviously about having a choice has been removed, way a in it and appreciate love me That has made charge, not me. in that before was mostly theoretical. should have one! I composed it yesterday when asked about my health in course a offering are I and (Bill landlady venue MBSR our by February). A year ago I had canceled my reservation with her, told her I had Stage 4b cancer. contemplated suicide during periods of severe depression. That time of severe depression. That time contemplated suicide during periods years. self-medicating AKA taking drug my to corresponds roughly also so prone to had been slowly weak- Until recently the depression I was for shorter and shorter lengths ening. It was getting milder and lasting Then when I was about 47, and of time, sometimes only a few hours. before, it kicked in again with a by some measures happier than ever that cause psychological a find not could I surprising. was It vengeance. both!) (or hormonal or karmic either was origin the figured I sense. made dosage of suggested a low practitioner Long story short, a wise nurse perimeno- several with helps apparently which Prozac) (AKA fluoxetine pausal problems including mood swings. And from the first day I took not am and it taking stopped since have (I over. were troubles those it, to medical menopause.) depressed anymore, probably thanks because on some level you actually want to die?” This was a brilliant was a brilliant level you actually want to die?” This because on some mid-twenties, my to old years ten about was I time the From question. - specu It’s reappeared. has it and ago, while a me to occurred thought A it is. patient – but there mark cancer hell for the question lation – pure not would I are chances recently, active sexually been had I If thought: I sex would have I am in. This is because penetrative be in the situation could have discov- I would have gone to a doctor, and been painful, and put me, now, in a much earlier stage. Which would ered the cancer at a much less smelly kettle of fish. Obviously, it does not help to think in be true that if I I can’t resist it. It might also this way. Still, sometimes cancer at all. or visited Y, I never would have gotten had never done X, all there really is. how it actually happened. That’s But then, there is fully get that. Part of me cannot December 2: Die while you are alive are you while 2: Die December

150 Crap, I’ve got cancer 151 Die while you are alive

He said 1-2% of patients who receive radiation treatment develop develop treatment radiation receive who patients of 1-2% said He Deepening one’s spirituality Trusting in intuition regarding health decisions Releasing negative and/or repressed emotions Feeling love/joy/happiness Changing one’s diet Taking herbal/vitamin supplements Currently I am feeling very healthy. The original cancer that I I that cancer original The healthy. very am feeling I Currently 4 have stage gone. I still is totally of it – was a lot and there had – (or killing me end up which may lungs) in my (metastases cancer from just recovering now, symptoms have any but I do not not!) I don’t So again of course, didn’t work!) of chemo (which, last round time that helps me – but much of the long I have to live know how people more, so it’s of myself, and love life, take good care enjoy my all right. When I read stuff like this I think, What about the people who did When I read stuff like this I think, What about the people who did these things who did not experience spontaneous remission? What December 6: Sitting with uncertainty she cites a study done by a PhD On a cancer blog by Bonnie Gintis remissions of cancer. Six candidate at UC Berkeley about spontaneous things were found in those who thrived: December 5: My heart hurts December 5: My how fast he talks. Dr O yesterday. I remembered Julie and I met with heart my that is them of One symptoms. current my about him told I should I thought emotional, but not certain it’s not kind of hurts. I’m longer term side- my recurring pelvic troubles are mention it. All of lists of short I remember a worksheet with effects of the radiation. column. term long the read didn’t I side-effects. term long and term on for so long he said it’s not really When I asked how scarring could go scarring. It’s fibrosis, a late effect of radiation. It means that the fibers stretching. It would seem that my stiffen and contract. So I need to keep tight. hips will now always default to being of 8-10 years. So lots of cancer cancer in the radiated area in an average He said they didn’t do full-on treatment isn’t curing, but postponing. again for pain relief they could radiation in my bones so if it is needed do more. The specific reason they can’t do CyberKnife (focused radia- kills part of the lung tissue, so if tion) in my lungs is that the radiation shortness of breath your whole it’s all over your lungs, you could have a Such radiation. about questions have I if him email to said He life. lovely man. I think it’s a pretty good summary, although maybe a bit too rosy? For a bit too rosy? For good summary, although maybe I think it’s a pretty instance, it doesn’t always help me enjoy my life, it sometimes fills me I list: bucket my on thing one only There’s confusion. and sadness with memoir as a book. want to finish this specific info about about info specific My hair seems to be coming in at very different rates in different different in rates different very at in coming be to seems hair My

While feeling the contact with my body and the slow relaxing, images I went to an “Entheogenic Wellness” meeting and panel recently with recently with Wellness” meeting and panel I went to an “Entheogenic P.S. get a foot massage! All in all, not great news. I’m off to and thoughts appeared. My mind went to my chest, how it hurts like how it hurts and thoughts appeared. My mind went to my chest, grief, like a regular heartache, but is cancer. So finally it is heartache me, was me. Again, I feel like no one, doctors, friends, that will kill December 7: Uncool update in my lungs appear to have grown I met with Dr M today. The nodules significantly since the last scan. simply emotions (the feeling in the pains, though I couldn’t tell if it was I have been getting chest (minor) where tumors showed x-ray the at Looking same.) the exactly is chest open to doing more me if I was pain. She asked I have been feeling they will essentially have no idea chemotherapy (keeping in mind that doesn’t mean getting rid of the whether it will work, and “working” I bit smaller). a maybe or same the things keeping cancer, it means of chemotherapy curing it that said the fact that there was no hope long how her asked I moment. the at me for deterrent biggest the is no further treatment. She said she thought I’d be likely to live getting more give will scan CT the but years, few a to months December 8: Heartache Dr M and sad falafels with Tong, After the meeting yesterday with awesomely named Relax Feet for a Jules and Candradasa, I went to the but summer, the over me got Kathy that left coupon one had I massage. badgered lady The anyway. $30 cost only they but it, bring to forgot I badg- be won’t I Ordinarily months. three for $180 spending into me ered. But it was a great deal! And why not live a little? - sponta experienced who things these of none did who people the about of the study. subject the people weren’t Those Well. remission? neous though bullshit, is cancer about hears one what of lot a that think do I drank kale smoothies/ A friend of a friend on purpose. not necessarily I’m that isn’t It cured! completely was and drops/____ lemon of lot a ate complete have they that believe don’t just I people, these for happy not the actually was if it What them. cured exactly of what understanding they did of things or some combination they were given, radiotherapy cured for certain what did somehow know do? And even if they or didn’t me. them, they’re not they might be a and Jessica. I frankly suspected Lisa S., Candradasa but appar- yahoos (I’m working on the cynicism, bunch of drugged-up interrelationship Some of it was about the ently not very successfully). some science. and plants, and there was between human physiology disease. nothing about treating physical However, there was places, which is fine by me. Main things werethe issues with my eyes I remain without the last few weeks have resolved. and nose, which for which is fine. hair under my arms, size (how much it’s grown since the last scan) and also look for cancer in last scan) and also look for cancer in size (how much it’s grown since the place cancer likes to go”. my liver which apparently is “another

152 Crap, I’ve got cancer 153 Die while you are alive I spent much of yesterday selecting books off my shelf to get rid rid get shelf to my off selecting books spent much of yesterday I What does it mean to “never give up hope”? That’s the consistent Dr M suggested not being away for more than two weeks, primarily more than two weeks, primarily Dr M suggested not being away for I’m planning to live for around In any case I need to have a plan, so Recently I looked up the questions the SSF social worker advised me advised me up the questions the SSF social worker Recently I looked Do you foresee I’m always going to be on chemotherapy? Do you foresee I’m how long would I live? If I don’t do more treatment, I don’t do it? – What is it buying me? What if Re more chemotherapy with my type of cancer look like? What would a decline of. Probably around 40 books. And a few more this morning. It was a few more this morning. It was of. Probably around 40 books. And be very nourishing. Sometimes I relaxing. Time alone on a project can need a break from, among other things, other people’s sadness. cancer advice. Does it mean never give up hope that you’ll be cured? means simply it Maybe denial? into merge hope does point what at But despair isn’t good. I seem to have an extremely rare, probably incurable at this point in time, aggressive cancer. Is it separate from my body? Is - it an accident, or wrong? Some Buddhist texts use the word “adventi tious”. Cancer could even be described as an “adventitious defilement” December 9: Climbing Mount Everest her was M Dr with meeting the in factor big a that today realized I anxiety. She seemed truly alarmed by my x-ray. I feel very healthy they emerge. I feel very healthy so they can deal with symptoms when radiation-reduced some and pain chest minor (with energetic and complementary medicine, walking, functionality in my pelvis). All the eating no sugar … did it help working with my mind, shamanic healing, I was thinking yesterday, My anything? It makes me feel good anyway. cancer is incredibly robust. body is finishing up with living. The points. Or maybe I’ll start living another year. After that is just bonus to me for hard it’s but everything, cure will that and smoothies kale on anymore. believe anything remotely like that I would add: What is the hoped for benefit of chemotherapy and what Dr ask did I S that. Dr had asked wish I I possibilities? the other are M #2. Next time I need to ask #4, although I think I know the answer I’m thinking must eventually – fatigue and shortness of breath, which it lead? Or maybe they have some lead to suffocation. Where else could in a more pleasant manner. way of helping one leave this world expecting it to go this way. But it keeps going. For the last few months, months, few last the For going. keeps it But way. this go to it expecting get to seems direction different a in go might things that possibility the - treat to resistant are cancers some said She remote. more and more I didn’t mine, and pancreatic. ment, like that reputation. know mine had Or maybe x-ray is a less in particular. An about mine she was talking specific and less toxic way thanthe other scans to get a feeling for how in one largest The growing. obviously are nodules The going. are things Conceivably could I than 42 mm (1.7 inches). lobe is more the left upper (Dec. 27). before going to Hawaii of radiation get two weeks to ask the oncologists: she says, “common “common says, she

Top Five Regrets of the nurse Australian an by written was Dying That’s all I can think of, though there are possibly myriad minor I was also thinking of the difference between thinking “as if” you’re if” you’re “as thinking between the difference of also thinking I was is that last? The idea this day were your about living as if And what rid of most do (or not do) in the next year? Get What do I want to in staying not regret I suppose I regrets. those of any have don’t I who spent several years working in palliative care, with patients in the palliative care, with patients in the who spent several years working in questioned about any regrets last twelve weeks of their lives. “When differently,” do would they anything or had they regrets. In any case, all of this was the best I could do at the time, and December 11: Picking turnips with a step ladder December 11: Picking title The you-can-be-funny.com. on death for euphemisms up looked I charming. also – turkey” formaldehyde the “Baste fave. a is post this of I had preferred love interests based 1. I wish in the fairly distant past height and looks. on kindness and humor rather than 2. I wish I hadn’t smoked cigarettes. (Probably unrelated to my current predicament, but still seems totally horrible from here.) 3. More recently, I wish I hadn’t complained as much as I apparently of most be to (Seems Center. Buddhist the of director was I when did what some people remember about the eight years I was director, which makes me sad.) of the body. But the cancer is now part of my body. My body produced it. it. produced My body body. of my part now is cancer the But the body. of be an accident? really there ever Can actually not being one’s life around planning in a year, and going to die some- imagining Apparently, neurologically, a year (or less). around in different Yet, these two as experiencing it. almost the same thing is very different! of imagination feel varieties already were you what from different radically something do might you the with communing not it’s if What that? like not it’s if what But doing. What if what you or climbing Mount Everest? lemurs in Madagascar nice? walk around for a while somewhere wanted to do was law? How to Oregon where they have a euthanasia of my stuff? Move a box of questions don’t know. The news has opened many retreats? I of open box life. The of my remains what spend to want I how about far. Emotions go so freeing in a way. No answers, questions feels very hurts more now. same way they always have, it just to my chest in the life the not myself, to true life a live to courage the had I’d wish I 1. others expected of me. 2. I wish I hadn’t worked so hard. my feelings. 3. I wish I’d had the courage to express my friends. 4. I wish I had stayed in touch with 5. I wish that I had let myself be happier. the years, traveling, etc., but I touch with some people I’ve met over list. Let’s see … don’t think that’d be at the top of my themes surfaced again and again.” To wit: themes surfaced again and again.”

154 Crap, I’ve got cancer 155 Die while you are alive “the condi- “the Apparently my health plan will pay for treatment if they can’t can’t they if treatment for pay will plan health my Apparently It also occurred to me that I could start some kind of chemo, and stop Currently I don’t have an appointment to talk to Dr M, so I don’t don’t to Dr M, so I appointment to talk I don’t have an Currently my ‘upper Misha telling me last week that I was thinking about are many other sisters is totally fucking sad, as Talking to any of my what I’ve done La Boheme) to write, but much of I came here (Cafe provide it. Misha suggested that I convince my doctor that I need to convince my doctor that I need to provide it. Misha suggested that I experi- does and clinic cancer gynecological a has which UCSF, to go call Dr A and The Second Opinion mental treatments. I also need to hang must you says everyone that hope the that I realized again. folks well, I suppose the opposite of ‘I’m on to when you have cancer is … anymore, just going to wait to die, not going to do anything proactive at some which should be soon.’ Perhaps that attitude is appropriate of me reminds It I am. like healthy feeling is one when not but point, as defines wikipedia which helplessness’ ‘learned of idea the as it of thinking been had I anymore. it worth wasn’t it like felt I when 18 weeks of chemo or zilch, but there might be something between … December 13: What hope in this context means December 13: What hope in this with Karunadevi, Skype call with Yesterday: Breakfast and meditation hips, sore my on good felt which class Iyengar gentle a Berlin, in Trebor and watching Homeland (second to and an hour meeting with Misha … main thing I took away from the movie Ted. The last episode), and the hopeful or at least suggesting the meeting with Misha was that she was possibility that we could find some kind of treatment (not necessarily chemo) that might prolong my life. learned to behave helplessly, failing tion of a human or animal that has by itself help to it for opportunities are there though even respond to avoiding unpleasant circumstances or by gaining positive rewards. and depression clinical that view the is theory helplessness Learned related mental illnesses may result from a perceived absence of control is for. what the hope Still, I can’t say over the outcome of a situation.” Perhaps one can remain proactive while dying. besides that, everyone makes mistakes, so why regret? But one does. I’ll I’ll does. one But regret? why so mistakes, makes everyone that, besides try to let it go before I get in the horizontal phone booth. (I find these you do, too.) I hope funny, very expressions I have my suspicions. the CT scan, though was found on know what her an available. I sent no appointments there were When I called, to Dr O of the scan, and one about the results morning asking email this of breath was shortness that unless there onc). Dr O replied (radiation or pain coming from a very specific location, it wasn’tworth destroying from Dr M. So I guess I’ll wait to hear lung tissue with radiation. does not mean the heart) pulse was very weak. (This burner’ (basically, it means actu- that my heart is weak. Not sure what in western terms my in issue vitality serious of kind some noted she obviously but ally, with Misha tomorrow. chest.) I have a consultation future. the way it is now and for the foreseeable interactions. That’s for death, and suicide, euphemisms so far is look up physician-assisted this felt good. I feel confused, though writing answer some emails.

It is always hard to predict how a person will do, particularly predict how a person will do, particularly It is always hard to Since the meeting with Dr M last my days are full, vivid, a roller Since the meeting with Dr M last my days are full, vivid, a roller someone as young and otherwise healthy as you, and with you looking you looking and otherwise healthy as you, and with someone as young time you will now. I, though, suspect that over as good as you do right be issues. that cough/shortness of breath could become weaker and or do not respond to chemotherapy, If you do not do chemotherapy, does radiation. Your pace of disease, though, you may benefit from a relatively has been significant progression over worry me as there will likely be Thus, I am concerned that survival short period of time. start a “count to maybe a year. But, please to not measured in months goes on and we work together down” as this is just a suspicion. As time to what I am seeing. Also, I think I will certainly be honest with you as on and have a good sense of you will be able to judge what is going when time is becoming much more limited. I just heard from Dr M: Dr from heard I just – Ms. Cullen - There has been progres CT scan report. a copy of your I have attached some lymph nodes and you also have disease in your lungs sion of the are “pressing” on any None of the findings of your chest. in the middle I do right now, but with radiation that warrant proceeding structures There is no cancer to the progression. the “ache” is related wonder if - areas. The bone find glands or other in your liver, adrenal apparent on the report, interpret, as the sclerosis mentioned ings are harder to can be from bone healing. coaster ride of contentment and sorrow. Again, I am adjusting to my coaster ride of contentment and sorrow. Again, I am adjusting to my December 15: Needs worker. social care palliative the B, with session a had I day other The ‘needs’. I’m not used to having was emerged The theme that eventually expressing them. I’m used to being needs, or at least I’m not used to and mine there, be needs letting just is then experience my of Part ‘fine’. other people’s, and letting mine be known when that is helpful. They don’t have to be the same and they don’t have to be in conflict. It’s all super basic, but new to me in the situation I now find myself in, navi- people other that and through, going I’m process mysterious this gating are going through in relation to me. Yesterday, Misha and I talked a bit about alternative treatments and and treatments alternative about bit a talked I and Misha Yesterday, that people don’t give real- how quack-ish they can seem. I complained istic info about what they can do. She said she figured the reason they to you unless you say you can cure don’t is that many people won’t go Hep C patients that she can cure them. For example, she doesn’t tell away take can they says who acupuncturist another to go they so them, options, for around looking worth it’s thinks Misha Anyway, virus. the folks at thesecondopinion.org can’t trials and second opinions. But the docs that deal much with cutting help. They say: “We just don’t have be a waste of your time.” They edge treatment or clinical trials … would and Stanford who I could consult. recommended some doctors at UCSF

156 Crap, I’ve got cancer 157 Die while you are alive Misha is going to make me an herb formula, don’t know if she’ll get get she’ll if know don’t formula, herb an me make to going is Misha (McCormick) in Colorado: Here’s a poem by Buddhist friend Leslie It’s Not Funny shiny red nose, She faces the words stage 4 with a clown shoes on, and dukes up. Cancer may win her body, but she’ll be damned if she lets it take the shoes. There are lots of things – well, it’s been greatly reduced so let’s say so let’s say reduced greatly it’s been – well, of things are lots There December 19: The profound lesson of reception lunch delightful a was Fellowship, Buddhist Gay the from Jim, companion at Osha Thai the other day. He is a hypnotherapist. Of course he helps a lot of people quit smoking, etc., but he has also worked with people who are dying and afraid. I asked him what he does with them. Not sure how he does it of course, but he somehow shows them how to separate their consciousness from their body (so that they can see their body from above). He helps them have an experience of themselves that December 18: Benefits of cancer II December 18: Benefits of cancer family) give me money or want to 1. People (mostly, but not only, my give me money. mad at me. 2. I can do whatever, and no one gets 25x more often than I 3. I hear, and say, “I love you” approximately used to. to it before I leave. She’s going to have it pre-made so I don’t have to boil boil to have don’t I so pre-made it have to going She’s leave. I before it to etc. I’m looking forward to being mountains of nasty leaves and bark, getting a small tattoo in Bali – warm for a few weeks. Thinking about Buddhist Real A post, (Jayarava’s picture. a or Words heart. my over Sanskrit words!) Tattoo, put me off the idea of using December 17: Canceling everything December 17: Canceling a way, I probably I have been feeling happy. In The last several days travel plans I about than you do! Almost all the 2013 have less to worry I’ll be After I get back from Bali in mid-January, made, I have canceled. about happy Very month. a least at for ordination Dawn’s on focusing 24 with my I may go to New Orleans week of March this. If I am able out in early April. Jeff. Paramananda may be coming sisters, Julie, and current situation. I often wake up feeling happy, and my time with with time my and happy, up feeling wake often I situation. current said. is being what no matter poignant, sweet and is very people be alive how long I will to do. I don’t know – I would like a few things I want that I do the things suggested do them. Paramananda enough to do them, enough time to whether I have not worry about to do and time and spend Dawn are to ordain good. My priorities sounds which rid year/this blog. Getting memoir of the last and to produce a with her, a lot I will be spending be grand. Of course of stuff would also of a bunch going to Hawaii people besides Dawn, too. BTW, not of time with other Cull in Bali on December 25. anymore. I’m meeting that is here; My first thought about this was,Oh yeah,convince someone that phone the on talked I and London) (in Jayacitta day same The but as a big change. To I don’t see death as a stopping of everything, I find it astonishing how not-sad I am lately. It’s important thatI I believe that much unseen is also here. I believe that much unseen is also here. Here the profound lesson of reception, nor preference nor denial. Walt Whitman, from Song of the Open Road You road I enter upon and look around, I believe you are not all You road I enter upon and look around, December 20: Just the facts, Ma’am Lisa Kee, Padmatara, Julie and I met with Dr M today. The best case and symptoms are there that is ideal The chemotherapy: for outcomes are there If cancer. the shrinking by them relieves chemotherapy the currently no symptoms, chemotherapy would delay the symptoms is different or apart from their bodies. He said they’re less afraid after after afraid less they’re said He bodies. their from or apart different is at all. or not afraid this, they then because they lose the anxiety, after death and there is life that. I more to it than on living. But there’s they will keep think that think it’s more that we have solidified (or in the excellent words of the SF county jail: thingified) things-as-they-are-now to a degree that we other some be could there that perspective, different a from off cut are we box the outside anything is there imagine can’t We kind of reality. favorite Chinese we cling to the walls of our box. (A are sitting in, so … ) in the well cannot speak of the sea proverb: The frog way The mind. ‘reality’-creating or grasping the around relaxing about with working were we like feel me made meditation about talked she I try to know The main difference is that when exactly the same things. which I want to be known, or cling to some form to things that can’t stay affixed, it is waymore painful these days than it was before I had to accept things much trying, and sometimes able, cancer. I’m very and love. I not with resignation but with creativity as they are, and embrace’. in a talk I gave as ‘the complete referred to this once see it as a final end sounds kind of crazy to me. (But then again, who I have had a strong sense of having the hell knows?) Since I was a child of having done all the sorts of been around a long time. I have a sense do, many, many times. And I don’t things that both men and women bonkers you’re think people many because that, saying around go just Buddhists!) or that it’s just some when you say it (even other western doesn’t it But truth. the of fear your quell to constructed you fantasy a belief. Intuitively and deeply, in make me feel better. It’s not even seems more plausible to me than light of my own experience, it simply be can’t our brain in everything that happens if As scenarios. other has proved it. My mind has been taken at face value unless science than science. around, in one form or another, longer but dammit, I am enjoying it. I don’t expect that of myself all the time, Out with a bang not a whimper also feel very healthy, very much alive. I suppose.

158 Crap, I’ve got cancer 159 Die while you are alive Signs Signs I will talk to the social worker about hospice care. hospice about worker social the to talk will I Gravelly voice, my mouth totally parched, very thirsty, and thirsty, very totally parched, my mouth voice, Gravelly I won’t be available on Feb much until after Dawn’s public ordination – they were starting to Many errands yesterday. Got my eyebrows I don’t know where the line is between realistic optimism and I have written to Dr A asking the potential benefits of consulting December 22: The demon alcohol I drank a glass of wine last Friday. I I haven’t felt well, possibly because or little (no matter how alcohol sometimes get ill a few days after I drink kind). what December 21: Brick shithouse December 21: Brick a silly movie it of Little Big Man tonight. For such Watched the rest Madagascar. Then an hour of David Attenborough’s does get really sad. three things a day rule. Every day. Wonderful. I have been breaking my And sleeping a couple of hours less than I usually do, but it seems fine. have the energy for it, I guess. My Not doing a lot of napping either. I anything see can’t I days. few last the in crap really gotten have eyes (where, by the way, Tong and I unless it’s pretty much across the street get more suitable glasses before saw a raccoon recently). I wish I could on my phone. leaving town. I can hardly read what’s about visiting or have some other ques- if you are thinking 9. However, You will know by reading this tion for me, please contact me directly. hard time blog when I am weak and having a breathing – that will be please remember this very important and a different matter. For now, still built like a brick shithouse. up-to-the-minute fact: I am alive, and 2pm and feel better. Might be time I slept until completely knackered. I haven’t been resting enough. to my three-things-a-day to get back rule. Tried painful. astonishingly was which waxed, – caterpillars resemble probably not blinking, on but light (emissions at car looked my get to not a big deal). Also went to my health plan to get my records forwarded to Dr A in Chicago. I figure if I do a phone consultation with him, I’ll want to do it soon after I get back from Bali. chasing down snake oil. Or, put another way, accepting death without being resigned to it. Where is the point at which a plummeting quality of nearing the end include getting weaker and fatigued. Dr M said I will will I said M Dr fatigued. and weaker getting include end the nearing of getting short. know when time is developing. She said she didn’t think chemotherapy was worth it if it it it if worth was chemotherapy think didn’t she said She developing. I don’t to suck, starts until it try it, I might slows progression. only They better tolerated. to be are known ones that give me She can know. else! worse than anything work any won’t necessarily by them, being treated won’t cover (since my insurance with them a place I get treatment in a good idea to doesn’t think it’s and Dr M months. I time is 9-12 metastatic survival anyone). Median don’t know kind of Overall cancer? My stats apply to. know what those don’t really median means … treatment? And I forget what cancer with or without nodules. The only since we first found out about the It’s been six weeks if I would even- that was intense for me was asking part of the meeting short- works well for dealing with tually suffocate. She said morphine breath. of ness for a potential phone phone potential a for Last night I had a coconut, lime, Last night I had a coconut, questionnaire

In packing. In of instead this writing I’m why That’s

Cull brought me The End of Your Life Book by Will Schwalbe. Club I am enjoying being alone in my apartment since Saturday. Spent Spent alone in my apartment since Saturday. I am enjoying being I know I’m supposed to be optimistic, but I am not. I also do not do not not. I also but I am to be optimistic, I’m supposed I know His mom had pancreatic cancer. over- is It garden. green super a of front in porch our on sitting I’m 3. You don’t have to talk all the time. Sometimes just being there is is there being just Sometimes time. the all talk to have don’t You 3. enough. December 27: The End of Your Life Book Club December 27: The End of Your Life before, been here spite of having and in Love notwithstanding, Pray, Eat, sort of place Bali is. And how I had forgotten what a spiritual, healing door- on offerings, and little art everywhere, is that there is, it beautiful or Had an excellent lunch steps, and sculptures and “family temples”. yesterday. It dinner or breakfast, whatever it was, involved fresh spring problem any be will there I don’t think … peanut sauce with tofu rolls, getting healthy vegetarian food here. (while wide awake at around 4am Here’s something I was struck by be all right, everything would be this morning): “Everything would or averted, as long as we all kept possible, anything could be salvaged running around.” He quotes The Etiquette of by Susan Halpern. Illness book: His version of the advice from that 1. Ask: Do you want to talk about how you’re feeling. 2. Don’t ask if there’s anything you can do. Suggest things, or if it’s not intrusive, just do them. consultation with Dr A in Chicago. (I answered all the questions, but the questions, but Dr A in Chicago. (I answered all consultation with It’s shocking how what kind of dental floss I use!) wonder why he cares in the last two weeks. I will need to much my eyesight has deteriorated overwhelming. travel to ready getting find I back. get I when glasses get I have so much sick person I always have, but it’s worse now because me. with bring to gear Where is my passport? any case, leaving for Bali tomorrow. yay! mint, and lichee juice. They don’t add sugar to the fruit juice, hours last night on the 17-page the on night last hours December 24: Disarming bombs vs bodily scans December 24: Disarming featured The Hurt Locker recently. Both Watched Frankenweenie and his dog, and the and love. One between a boy and themes of death bombs. defusing of act the about something and man a between other way My mortality. one’s face may one ways different the Interesting on a screen. abstract: mostly impressions lately has been relatively - medi for search the does point what At living? worth not becomes life of no answers. I have distraction? become a cine believe it changes anything. After all, when I Then to treatment. had a complete response and yet I was not hopeful, was first diagnosed, I ended were found, but that the lung mets optimistic when I was pretty be would that change, everything should However, groundless. being up fine. I can’t bring myself to count on it. It’s better for me to prepare for is a bonus. love that happens all the life and death, then cast, the hum of insects is constant. A fly is walking around this screen. screen. this around walking is fly A constant. is insects of hum the cast,

160 Crap, I’ve got cancer 161 Die while you are alive Then it rained buckets buckets rained it Then wasn’t so much a cremation – at least least at – cremation a much so wasn’t On an unrelated note, suddenly I have an astonishing amount I have an astonishing amount On an unrelated note, suddenly We were talking about Kathy and I went to a lovely spa yesterday. I wanted to add a thought to the three tips from The Etiquette of We waited around for hours in the boiling heat for the procession the procession for heat in the boiling hours around for waited We of hair (white hair, but still) on the side of my face. Given the right side of my face. Given the right of hair (white hair, but still) on the mistaken for Hugh Jackman’s AKA light my sideburns could easily be back growing is hair my that be could It Avengers. The in Wolverine’s my of perks many the one of just it’s maybe or chemo, after weird lady club. newfound membership in the middle-aged I have a hard time accepting is acceptance. I was saying the only thing I’m “too young” to have. As I have certain physical changes I feel like I have are shared by many mentioned before, some physical problems who are just dealing with them people (older, my age, and younger) physical problems so I imagine anyway. I am simply not used to having while a in once every Like are. they than hardship a of more be to them sitting on my bed and can’t lean I bash my foot on something … or I’m is actually rather close … that to reach something forward far enough all in all, not a big deal. Illness I posted last time. I post things like that because I done have who people The think, I them post I after then interesting, find them the things advised against in that list, do they think I am chastising them in some way, or upset when they ask me if they can do something? worry not you need perhaps list, that read you when that thought you If so much about saying the wrong thing. and the air cooled down quite a lot. We had a big umbrella, and random random and umbrella, big a had We lot. a quite down cooled air the and why would, they course Of it. under stand and come just would folks was a huge bright in the west wouldn’t do that. There not, except people tall, feet 25 around genitalia!) realistic astonishingly (with lion red it, and hundreds grid that was used to carry standing on a bamboo walking, some some on motorcycles, most of people, some musicians, a while we ended up in a park carrying offerings. After walking for an awning; then a big pipe full of where the huge lion was put under gas was shot at the lion and it all went up in flames. The whole event ‘relational’ other cultures are, how made me think of how much more find personally I though lovely, is which day, all chatting around sit you it kind of exhausting! When explaining the communal aspect, she said, “Some day I day I the communal aspect, she said, “Some to start. When explaining help.” to people need will I and die, to going am December 29: Cremation parade 29: Cremation December invited around, us shows and here room our cleans who lady the Kadek, a crema- people to You just invite random Really? us to a cremation. be amaz- here seems to toward death to say, the attitude tion? Needless itself event The different. ingly include a that series of rituals – as a cremation a as think of what I not but that, after things maybe and cremation, a and parade a party, huge stayed. that’s how long we Roosters crow all night. We’re telling ourselves we should go out now now go out should we ourselves telling We’re night. all crow Roosters here … sitting we’re still hot, but it gets too before (9am) What’s one of the items on your list? going aren’t who people including people, of kinds all hosts world The So, the list of “how people should be” has to be overcome. It is too I got really annoyed with someone yesterday. Fortunately I had a chance chance a had I Fortunately yesterday. someone with annoyed really got I to reflect a bit afterwards, and I got to thinking about standards. I was wondering whether everyone has a list – an unconscious list – of all the things “a person just shouldn’t do”. A lot of things on the list have to do with sharing space, which is why living communally can be so difficult. Items on the list also include prohibitions to do with time, hospitality, ethics, work, friendships. going aren’t only not who people including much, contribute to able be to to contribute much, but who may only bring their own needs to a situa- tion. People who might even criticize you for what you are contributing, or for not going out of your way to meet their needs. The world includes all kinds of people, who are ‘created equal’ in a certain sense. But being can everyone mean doesn’t it but potential, even or rights, to refers equal contribute equally to a situation. They Confusion anything. of cannot. much do Some won’t people people some take, will will people some give, about what’s fair and what’s right gets mixed up with this basic situa- of people. tion, that the world includes all kinds narrow for us. Believing the list is like not having walking good around eyesight without and glasses bumping into things, some are of spiky. If which we put on our glasses we see that us toward them pull standards things our them; to attached are aren’t we that It’s us. attacking like a magnet, to switch metaphors. This is why we cultivate kindness, to stop punishing ourselves. When we practice kindness and tolerance we desist from picking up the proverbial hot coal with our bare hand. In this virtual metaphor smorgasbord, I say, finally, that to do this - to cultivate tolerance and love - is a lot of work, and is the final frontier. Tolerance 21 September 2008

162 Crap, I’ve got cancer January 2013 Everything looks beautiful

165 Everything looks beautiful It’s the rainy season now, or one of them. The first coupleof days, it Kathy has recovered from Bali Belly. We are in a very different I’ve been feeling energetic and healthy, except in certain kinds of except in certain kinds of I’ve been feeling energetic and healthy, poor thing! moment, the at Bali Belly Also, Cull has some kind of would rain for an hour in the afternoons. Now it seems to be raining all would rain for an hour in the afternoons. Now it seems to be raining all roof but no walls, it the time. Part of where we’re staying is outside (a is very swank). I walked out of my bedroom this morning into a deluge. town now, Seminyak. Walking isn’t much of an option, especially in the pouring rain. Balinese people seem to be consistently lovely. Tonight some special white mushrooms I’ll hopefully be making soup with January 2: It’s raining in Seminyak good. And to clarify, the coffee I forgot to say: The luwak coffee was beans after having been partly is not technically shit, it’s the whole digested by the luwak. light when I can see all the blond wolverine fur on my face. That’s a wolverine fur on my face. That’s a light when I can see all the blond away. gone have to seems had I that pain chest minor the But shocker. gourmet coffee at a luwak coffee I felt it again when I drank some super luwak kopi is essentially mongoose plantation the other day. By the way, locally called a luwak, eats the poo. Seriously: A mongoose type animal, cleaned and brewed. We saw a sad coffee berries. Their shit is collected, forest collect it from the they just restless luwak in a cage, but mostly in London for £70. But the original floor. Apparently you can buy a cup chest my makes kind any of coffee drinking that seems it that was point hurt. I’m so done with that. a down to I’m heading in bed since yesterday afternoon. She’s been meet Kiranada, a friend who comes restaurant in town, Casa Luna, to we’re headed to Changgu which every year from New Hampshire. Then is in the west and I think at the beach. January 1: Mongoose poo January 1: Mongoose how remember me made has Bali in here being now and Mexico in Being most of everyone me to suddenly be rich relative to awkward it is for the other day, temple in Sidemen (SEE duh men) else. At the big Hindu girls would ask stream of excruciatingly cute little a seemingly endless Ubud, where we buy postcards. Men standing around us very sweetly to anyway, one when you walk by. In touristy places are now, say TAXI? saying not I’m feels. it how that’s or money, of bag a objectified, becomes me makes it that just hardship, huge a it’s that or sense, make doesn’t it of gorgeous when I feel irritated by the persistence feel bad, especially being the poor one. children. I’m much more comfortable 25: Jan go on retreat: ready to Getting do, post-chemo go with the really the robes the sideburns. mind yes? Never End placed on a bed like a boat Eventually, I was with sky filled windows, in an empty room the leopard-like quilt. with azure blue pillows, time, with the kind of light It was English tea ordinary. It had just stopped raining. that electrifies the glass glittered like secrets. Beads of water on mulling wine. In another room they were baking, demerara, I was warm with cloves, melting butter, and wearing your pyjamas. My felt slippers opened waited on the floor. Then the door soundlessly, and I climbed out of bed. a horse, It was like slipping onto the back of story and the room folded in, like a pop up the songs then the house, and the Vale. Even grooves and prayers tidied themselves into its chimneys and the impossible hospital lay down room chairs. its sluices, tired doctors, and waiting And I came here. It was easy to leave. January 3: End January a writer website. She was to Julia Darling’s sent me a link Ratnadevi her blog: a great poem from of cancer. Here is who died (“Highland white fungus”) Cull brought from Singapore. They’re They’re Singapore. from brought Cull fungus”) white (“Highland in though too up messed are lungs (her lungs for good be to supposed is handy. which about cancer, to be forgetting I seem way). a different

166 Crap, I’ve got cancer 167 Everything looks beautiful The End of Your Life Book Club, in which the guy takes his I sorta feel that I want to take care of myself in other ways and let let and ways other in myself of care take to want I that feel sorta I doesn’t quite get to it either. But saying I want to do what is ‘natural’ have I and Chicago in A Dr to sent been have records my all Still, We got a motorcycle, it’s really the only way to get around. More More around. get only way to the really it’s motorcycle, a got We for lungs) was with white fungus (reputedly good The soup we made nature take its course. But I can’t really say that until I am responding responding am I until that say really can’t I But course. its take nature chemotherapy about talking was M Dr ago while A proposal. specific a to life. She is going to consult with as if it might add a few months to my 15, at which time I guess I’ll Dr C at UCSF before we meet on January find out what chemotherapy she’s going to suggest. (She won’t suggest having symptoms.) She will not actually starting anything until I start since, at least based on what be surprised if I refuse more treatment, func- away take reliably more will offer on what’s before, me told she’s tionality than add time. I don’t always choose ‘natural’. My life, and probably yours, revolves around tasks, buildings, modes of transportation, and technology that avoid to want I thing the realized I fabricated. man-made, artificial, are feeling is ‘force’. I don’t want to feel like I’m forcing my body to live. written to them asking if I can do a phone consultation with them the week I am back. Also, Nancy found a contact for me at UCSF clinical trials who I’ll hopefully be talking to in February. January 8: The destroyer and the creator January 8: The destroyer is how much chemo- looking at an oncologist is always what like Seems how much of you it will destroy. therapy might prolong your life vs. (though it has improved a It adds time and takes away functionality thinking about this when I was great deal over the years). I started reading books. She had pancreatic cancer mom to chemo and they talk about longer than she would have, prob- and lived around 18 months (much time she did a lot of things. She ably, without the chemo). During that at best, and at worst, miserable. also spent much of it inconvenienced She stayed alive as long as she could. January 5: Easy rider (not) rider Easy 5: January of the jailers one in jail because I was in which a dream after On Friday I felt the day. much of and slept of energy sapped I felt like me, didn’t next day. better the chaotic rain, relatively in the torrential Driving around of a scooter. traffic,navigation, and (for me) switching sides of the road, was rather to to get where we wanted cool to be able though it was nerve-racking, go without a taxi. (I guess!) I drove for the first minute and once I had Japanese good a had We drove. Cull and stopped I traffic, into merge to at Supermarket around, did some shopping lunch and wandered a bracelet that is (1 hour.) Also Kathy bought Bintang, got $9 massages we’re not sure. either silver, or “silver,” of because I thought it was fungus; because of the it’s foul. She thinks but energy, of amount fair a have still I general In made. I broth veg the Was wondering and I’ve been coughing a bit. my lungs feel congested the other thing. by the air conditioning … or if it’s if they’re irritated only difference you would notice is is notice would you difference only I don’t want to complain, but I don’t want to be vague either. This This either. be vague to want I don’t but complain, to want I don’t The hair growing back after chemo is surprising. The way my hair is that even though I seem to have The main point I wanted to make is the sweet and nice and lovely how day other the pondering was I I was reading Stephen Levine’s Who Dies? last night. There’s this is a lovely place, and I am enjoying it. I think it’s hard for people to get get people to hard for think it’s it. I am enjoying and I place, is a lovely I and not feel sick, So far I do person: in aren’t together when we this the me saw If you sick. look not do Her boat is empty. perfect person. 10: Such is the January aging body my of result the are which complaints physical minor have I not in pain. am I as a result of cancer treatment. I think 10-15 years in my lungs. I are rapidly multiplying cancer cells Apparently there coughing been I’ve breath. of shortness have I do nor them, feel cannot in the sure it’s from the super dry air conditioning some. I’m pretty it. I turn it off the I seem to be getting used to room I sleep in although I wasn’t doing before. rest of the day which are back in very short, and way grayer. Eyebrows on my head is still their full glory. And as I may have mentioned before, I have very fine with perceived and subtle of sense the in and awesome, of sense the (in some difficulty) blond hair growing where men have sideburns. On the is there right the On down. straight points hair the face my of side left like a wolf. Or, perhaps, a super- less and it sways in toward my nose, hero wolverine. Hello Hugh Jackman. Another sick. feel currently don’t I grave, the in planted firmly foot one is that I’m much pickier than I cancer change, again relatively minor, used to be about food. I used to be more flexible, more working supplements other various and class. pills anti-inflammatory four take I Now every day. I try with varying degrees of effort to avoid occasionally some dark chocolate eat almost nothing with added sugar, white flour.I miss it though it’s a pain reading or a bite of something. I don’t really eyes don’t work as well (unrelated ingredients, especially now that my everything. to cancer, I think) and there seems to be sugar in almost I don’t desire it anymore. Avoiding it for so long, most of the time got I before that said have wouldn’t I mean I are. life my in people bastards, but of course because cancer, not ’cuz I thought they were me what they think I should do, things have changed. No one tells unless I ask. It is lovely. know if image. I don’t Taoist a empty boat, about being an part great that’s enough of an explanation, but I find it an inspiring idea. As an example of not being an empty boat … There is a sort of touchy issue for me, it doesn’t come up very often but it does come up. It’s when my even, or, dead already I’m if as acting are people thinking to goes mind someone just It’s all). at sick feel not do I (when something do to sick too I doing something nice for me or taking something off my hands, and and it over get of sort I Then yet! dead not am I man, god Good think, point the from Perhaps process. a be kind. It’s to trying are they realize that my hair is very short. I have been described as “full of life” – that – that as “full of life” I have been described is very short. that my hair has not changed.

168 Crap, I’ve got cancer 169 Everything looks beautiful very very today. It’s It’s today. (didn’t like it thatit like (didn’t enjoyed Dawn’s send-off this afternoon: Sevenfold Puja Puja Sevenfold afternoon: this send-off Dawn’s enjoyed Extremely Loud and Incredibly Close Incredibly and Loud Extremely Talked to the social worker – about travels, a Living Funeral, my travels, a Living Funeral, my Talked to the social worker – about I’m wondering about doing a Celebration of Life or a Living Wake or As to me I know of nothing else but miracles. As to me I know of nothing else but Walt Whitman Back in bed, yay! The cold hasn’t bothered me like I thought it it thought I like me bothered hasn’t cold The yay! bed, in Back In any case, any In We watched We Mind on Cancer, and On the Occasion of myCancer, and On the two poems: Mind on I’m writing Advance Health Care Directive (I’m going to do a new one). Then walked Advance Health Care Directive (I’m going to do a new one). Then walked were there and sunny, and beautiful was It Beach. Ocean at whatever when Paramananda is here in early April. I had asked him to 7:30pm and I will try to stay awake long enough to do this. It’s nice not long enough to do this. It’s nice not 7:30pm and I will try to stay awake screen. having ants crawling on my computer cute little birds. If I were naming them I would call them Running Fat Cutebirds. I am as enamored with San Francisco as I was with a on beach the at Look traffic. of lack astonishing an is Here Fact: Bali. Monday, hardly anyone there! My days filling up and I’m hella jetlagged and coughing a lot a coughing and jetlagged hella I’m and up filling days My January 14: The beholder’s eye would. I like it. with ‘rejoicings in merit’, then offerings of a poem and a song which of a poem and a song which with ‘rejoicings in merit’, then offerings I should point out for Americans were both great, and ‘cream tea’, which and jam. Dawn will leave for her means scones with clotted cream retreat on Monday. much, needed more editing), had half a Jay’s seitan cheesesteak and wentand cheesesteak seitan Jay’s a half had editing), more needed much, to bed at ten. At around noon when I woke up briefly I… Myhour one … more … … just maybe … but … lot of sleep, that’s a thought, Wow, joints were sore and my guts were painful. I finally managed to extract 36 hours in bed. I don’t feelmyself from bed at 10 am after an impressive combined with jet lag? too bad now, just a bit weak. Food poisoning January 13: Everything looked beautiful January 13: Everything Everything me up from the airport Friday afternoon. Padmatara picked orange of kind this with afternoons clear those of One beautiful. looked light, the tops of … even from the plane, the light shining on everything the clouds were beautiful. of view of the full boat, there’s always going to be the right kind or the the or kind the right be to going always there’s boat, full of the view of my with happy very very, am I time the of Most kindness. of kind wrong It sounds funeral. have a living I suggested Vimalasara circumstances. know what it is. I don’t really groovy though some for days these poems finish really can’t I Massage. Balinese Seventh daysten the for up set appointments of lot a have I … try will I but reason social with Dawn. The going on retreat to be at home before I’m going worker, Dr M, three phone appointments with Dr A’s officein Chicago, set up for me. clinical trials lady at UCSF that Nancy and on Feb 11, the any mangosteens. cold and rainy, and there won’t be And it’s going to be Talked to Dr M with Jules and Padmatara. She (M) must have had had have must (M) She Padmatara. and Jules with M Dr to Talked I symptoms developing start I when says she hand, other the On My looks. it how Thursday on her from hear will and x-ray an got I in are If you “EGFR mutation.” the for results on waiting still We’re I am feeling overwhelmed with things to do. My calendar (for the Everything looks really beautiful. Is it in my eyes? Is it the light? light? eyes? Is it the Is it in my looks really beautiful. Everything a nice holiday herself as she seemed much more relaxed than usual. I than usual. I as she seemed much more relaxed a nice holiday herself a is it because perhaps, anything mean doesn’t this and feeling, the get as enthused as else is thinking, that she is about guess at what someone so. She mentioned more chemo. Perhaps even less I am about me doing chemo, and more refused and cancer liver of dying was who a patient of mushroom. remission from taking some kind went into complete lungs sound very quickly. At the moment my should start treatment healthy. Healthy people are much more likely to tolerate and benefit the earliest I could start and she from treatment. I said mid-Feb is seems to be leaning toward a drug thought that was reasonable. She (geez, who are the crackheads called CPT-11 possibly with Cetuximab six within know would we said She names?) drug the with up come who is, I can maybe deal for six weeks if the drug is working. (My thinking weeks.) [Q: What is the difference between fantasies tell me that the nodules is smaller.] have stopped growing, a nodule and a tumor? A: A nodule my-lungs- vague sense of the break from a would give me ’cuz that the make to having of me relieve that, than more and, as-time-bomb haven’t. probably they But chemo. more do to not or whether decision (a phrase my dad used to They’re probably growing like gangbusters better) apparently isn’t a cancer use). My cough (which has gotten much may include blood. If I do more cough, which is lower, persistent, and is reasonable. chemo, domestic travel for two weeks or less some of you will be helped need of a mnemonic device to remember that, out comes it mutation.” If Refuge for “Effective Going of by thinking is effective 80-85% which of the positive, she will want to try Tarceva, lung cancer patients (keeping time for EGFR mutation positive primary drug this of the sound patient!) I like cancer a lung that I am not mind in tolerated” and I believe I heard that it doesn’t it’s “well it’s a pill, because cause hair loss. So I vote for EGFR mutation positive, and Tarceva. next week or so) is filling up fast. But today because I did not go to Art around putter to get I sick), (he’s dinner canceled Mike and Recovery for try I and calls and emails of lots laundry, sheets, changing stuff, doing to meditate while I am doing them, so I’m feeling a little calmer. January 16: Tsunami brain January Potential plovers. are called piping beach the at the birds Apparently I what of idea Zero Life: of Funeral/Celebration Living with problem or be done. would want to do, officiate atmy funeral butperhaps it makesmore sense to do it while for places up some also looked alive! I I’m still and here anyway he’s burials. natural and cremations Am I dead?

170 Crap, I’ve got cancer 171 Everything looks beautiful getyour- But no one no one But I’d pay it back! How can I think of my life in terms of how much money it’s worth? of how much money it’s worth? How can I think of my life in terms Saw Misha today and she gave me a big bottle of foul and nasty nasty of foul and gave me a big bottle today and she Saw Misha 20 or likely to be April Party, it is Living Funeral/Death If I do the The second bummer thing, though not surprising, was the answer answer the was surprising, not though thing, bummer second The various things, and of course I He’s going to get back to me about January 20: How much money for some life? January 20: How oncologist the with the talk focus here to the down narrow to have I’ll like other oncolo- I noticed was that he didn’t talk Dr A. First thing They way they to. He sounded like a regular person. gists I’ve spoken “chronotherapy” – it’s adminis- do chemotherapy at his clinic is called rhythms and reduces side-effects tered somehow in line with circadian neuropathy with cold lasers. by 40-80%, he says. They treat peripheral Germany, and Korea doing He knows of clinics in Israel, Cabo (Mexico), to spend on it that’d be experimental therapies. If I had $100-200K to look into – Anvirzel, an extract groovy. He did mention a few drugs Honduras, and the diabetes drug of oleander that you can only get in with ovarian cancer. Metformin, which has done very well for diabetics a lot! Curing my condition would be worth (Life and Death Planning). They even have a checklist, They even have a checklist, shittogether.org (Life and Death Planning). to think about I might have waited a bit too long which is awesome. doing this stuff. January 18: Senior citizen pelvis citizen Senior 18: January door open the only car I could to move my outside I went night when Last even hardly is door side driver’s the to next dent The inches. six about Not that passenger side. do is get in on the … all I have to noticeable into a lake it’s curtains. Plus if I drive senior citizen pelvis. easy for a steps, day. Around 8,500 four times per add to water and drink liquid to recent history. a record in 21. On the fence about it now, but currently frying other fish, to motivated to do it to think about whether I am really metaphors. I have mix to link a me sent Candradasa be. would reasons the what and January 21: Meditation and gun jumping I was thinking about how people who can accept a big learning curve for meditation about exception an make to seem tasks new of types many to my question about whether there could be effective alternatives to could be effective alternatives to to my question about whether there seaweed fungus, or whatever. He chemotherapy – tomato enzymes or some kind of chemotherapy. said my cancer is too far gone, I’d need have other irons in the fire. I haven’t heard back from Dr M yet, and I still have the other consult at UCSF in Feb. I was thinking today though that even though my pelvis is messed up in multiple ways that make me feel old, at least the radiation got rid of all the cancer there. So that was worth it! Right now, I don’t want to talk to any more doctors. possible one or three years a possible one or three years thinks that’s going to happen. Is adding I could get my my life worth $100 or $200K? Never mind whether to the question depresses me. Perhaps hands on that much money. Asking ask. (Or, better, forget about the there is a different question I should whole thing!)

Re the Center in Chicago, I think they are very innovative and want want and innovative very are they think I Chicago, in Center the Re of my car for free so I can now Viradhamma got the dent pulled out night. Seems like the nodules I got the results of my last x-ray last to two weeks be gone for and will morning retreat this I’m going on I am looking forward to many things about the retreat. One is that I sorta jumped the gun on the Living Funeral thing because Funeral thing because on the Living jumped the gun I sorta to help people, and also what they offer, including a whole range of a whole range of also what they offer, including to help people, and Is it better to buy to be astonishingly expensive. supplements, seems Vitacost. (If I’m I don’t know. I opted for Sears and their supplements? they do phone know why.) It did occur to me that dead in a month we’ll stuff. But I suppose if the stuff consultations in order to sell people with it. I’m sure their expenses are helps people, there’s nothing wrong substantial. open the door. were on the previous scan. Looks are not growing nearly as fast as they assuming here that they list the like increase is 30% and 5%. (I’m not think “this is how it will be nodules with the most growth.) Hard more not to think in that way. From from now on” but I’m learning a bit with Stage 4 cancer over a year my point of view, since I was diagnosed said also M Dr months. few every changes completely situation my ago, test can’t be done as there isn’t she found out that the EGFR mutation results would give enough info to enough tissue. She didn’t think the make it worth doing a biopsy. I can’t write be with and ordain the lovely she-who-is-currently-Dawn. super that are elements it involves because about that process much I have to spend time unless to post from there, am unlikely I hush-hush. at with Sanghadevi, my the cafe for some reason. I had a helpful chat medical conversa- having suggested not who morning, this preceptor, idea. is an excellent I think which the retreat if possible, during tions retreat. the proposal during chemo M’s Dr to know great rush no is There be holding not hand and at task the on fully focus more to able be will I so many threads. Though I do seem to cough a fair amount, I am very say, did, I that fact in healthier Way healthy. feel still I that grateful off drops calendar The plans. no have I April after Still, ago. years two like a coastal shelf. January 25: The accountant and the preceptor 25: The accountant January things record to – wants biographer the or – me in accountant The Like talking time to write about them in any detail. whether or not I have for meeting Board final my attending and hour, an for nutritionist the to some addressing finally and resigning officially Center, Buddhist SF the thing since my have been kind of hanging over the painful issues that of a relief. a year ago. Suffice it to say: something last meeting over as something they simply won’t be well suited to or can’t do. I thought thought I do. can’t or to suited well be won’t simply they something as - experi as a learning about meditation a talk to while listening this good talk. It’s a Fronsdal. by Gil ence sense to it makes no here in April. Realized is going to be Paramananda Dawn’s in Lake County at now … I’ll be up that kind of thing me to plan about two weeks. or Friday for retreat on Thursday ordination

172 Crap, I’ve got cancer 173 Everything looks beautiful Truth is, I love life when I am on retreat. Everything is perfect, even But getting home is another matter. Life floods in, fills oneup to I started wondering: are retreats really that great? Do they really Why go on retreat? On the last retreat this summer, we lutely beautiful double saw rainbow and turned around to an see this gorgeous abso- golden light filling the sky. It was magical. Most ofit’s thenot time magical, however most of the time it’s what might look like a big You drag. file here and file there like Marine,a andyou sit in a cold roomin the morning (not that early, we are not of the Buddhism) focusing on your breath for example. Early From the point of view Rising School of of the Average Joe, what we do doesn’t sound like some kind of sound punishment. Or just boring. For some it is very very good, might even much an acquired taste. pain, even difficulty withsomeone, feelings coming or painful up during emotions meditation. There is or physical everything. spaciousness Even being annoyed around at something is amusing. No constant chatter. No advertising, no news, no internal external ones distractions however). (plenty We of walk, a job, small live a meditation, Food, simple. very is communally, Everything simply. cook communally, live few a after especially beautiful, are People do. to is there all that’s – sleep days. Clear eyes, smile on the lips or tears in the eyes, simple, nothing to blame. Just a way to notice spontaneous kindnesses literally nothing else to do. You can go down to the little water hole and when there is count 36 rust-colored newts floating around like idiots. You can wonder whether they’re newts or salamanders. the gills, and further. The structure is gone. appear longer no meals vegetable-intensive The Yummy gone. are people tive happy, calm, recep- like clockwork; they are replaced in part by hastily prepared, or solitary greasy restaurant meals. The circus of American politics grinds on. People don’t have time to reflect much, living from knee-jerk reaction to knee-jerk reaction. And I become more like those people; and to do so is painful. I get swept away with work. Not every or week time. a lasted Sometimes I time, This I while. a quite can for going vibe retreat the keep two. After that, I started getting wrapped up in work, skipping medita- tions, and feeling irritable and anxious. prepare one for regular life, or are these entertained the seriously never ignoramuses I Honestly, correct life? from who escape an think are they Cultivating the inner retreat Cultivating the 14 September 2008 questions. However, sometimes transitioning back from retreat is diffi- transferable. I of contentment does not seem at all cult, and the feeling can’t seem to immediately take up personal responsibility and match it up with ACTION. But I wish I could. I wish I could more often achieve “inner retreat” here in the city, responds and that for me longer. of part An the inner with retreat connecting means fully means It unified. being positively to a variety of situations, that simply does what needs to be done, rather than wishing it were otherwise. It means the conditions for retreat are inside my body, my connection with nature is inside myself, am. Ah, a dream ... no matter where I

174 Crap, I’ve got cancer February 2013 Hope and fear Feb 5: Hridayashri and me, the day after the private ordination. Photo, Padmatara 177 Hope and fear

Wow. All that meditating. Now let me think … I have been here been here Now let me think … I have Wow. All that meditating. confines narrow the above, rise or drop, to able being case any in And concep- the through see You don’t. you but that, about thought you If But “astonishing” is an epithet concealing a logical trap. We’re aston- ished, after all, by things that deviate from some well-known and universally acknowledged form, from an obviousness to which we’ve grown accustomed. But the point is, there is no such obvious world. Wislawa Symborska February 8: Things I don’t know The public ordination is tomorrow and I have much to do still. But this seven full days. Including morning pujas and sitting meditations, I’ve meditations, I’ve morning pujas and sitting seven full days. Including 30 hours since I’ve been here. I had meditated … 260 minutes a day. So hour an half around for say today, experience one rewarding meditative good odds? You can’t even know for or an hour. Is that a good reward, for meditate can You to happen. going that is like anything that sure was it of rest the course Of (potentially). happen doesn’t it and years it were I couldn’t spend 30 hours good. It’s not like it was torture. If a of direction a in leaning or – being of kind a It’s it. doing voluntarily kind of being – that is its own reward. … of the way I usually experience myself for a few minutes is worth whatever. It is the most subtly liberating yet undefinable experience. like … normal. The rest of your life, And when you’re having it, it seems meditating, those are the hours that plus those other 29 hours you were are weird, that don’t make any sense. are: pain fantasies through which tions of world and self for what they used. been has metaphor possible single Every filtered. gets experience experi- an convey can Nothing are. really they as Things etc. veil The delu- from temporarily, however free, are that heart and mind of ence create, explain. Nothing, even, sion. Nothing to defend, destroy, protect, to understand. February 2nd: On retreat February 2nd: On Am I young or be fading a bit. I thought it might. Identity seems to meditator or not? Weak or strong? Rich or poor? A old? Sick or healthy? irritable? These Anxious or calm? Tolerant or Worthy or unworthy? anything. sharp relief as words that stop meaning identities come into that angsts, that is my self? Who is the self Who is my self? Where like me. They feel into the future? They don’t feel narrates, that projects like something happening. coaster We had a great time. It was exhausting, too, but not too bad! There There but not too bad! exhausting, too, great time. It was We had a reflections useful some were there retreat, on weeks two the During by of supplements, some of those recommended I’m taking loads (more). I did plenty of coughing Turns out chanting makes me cough important things, another The retreat was, among many other Yesterday, Nancy, Trebor and I talked to the director of early phase Yesterday, Nancy, Trebor and I talked to the director of early phase clinical trials at UCSF, Dr L. It’s hard to know what to say about it, partly because initially she was so intense, and not in a pleasant way. (Oncologists are amazingly stressed out. I would love to teach all my - oncologists to meditate!) The operation also seemed rather disorgan blood preliminary the During related note: non-cancer ized. On a February 12: Dr L on the roller February 10: Whew someone (especially in another It is a very interesting process naming became Hridayashri. Dawn ordination, public language!) Yesterday at the was It means “Radiance were there, which of the Heart”. Laura and Jon simple. I don’t it. It feels I like robes. It’s also interesting wearing nice. hazards. Like walking upstairs how to do it, so there are really know them so tight that I can’t sit on the and tripping over them, or wrapping out for the ceremony. floor! I had it pretty much figured – and I I and it – reading is who are you whoever as are – friend my is blog seem it would when even sometimes, with you check in have to simply else! to do something sensible more into such planning goes lot of activity. Much of stillness and a was a lot at some appeared and Danamaya Karunadevi, Padmatara a thing. to have ways. It was lovely each in different a few days to help, point for beautiful a deeply moving, private ordination, Then the them there. experience. which I am living I became aware of the degree to on my life and death. certainly none a future, having no plans after April, as if I don’t have neutral. it’s sometimes me, for sad is this Sometimes year. next for freed mind in my like there is space of liberating, it’s kind Sometimes packed out with ideas about the future. up that used to be a day. I still feel Misha’s gross potion four times Dr A, and drinking told was I months. few a than longer live to going I’m guess I healthy. been two months up to a year” on December 7. It’s “a few months to feel sick. But I do cough a lot, I do not otherwise since then, and while know” is much target. “I don’t moving the prognosis is a perpetually simpler and less jarring. tired. Something else I managed was I on the retreat, much more when the cough is caused by cancer. A to stop speculating about was whether but I’ve coughed a great deal since few weeks ago Dr M said it wasn’t, know” which felt so much freer then. Again, kept landing on “I don’t of answer. than always having to have some kind speaking, I hardly thought cancer holiday, during which, relatively and chemo at all, which is very about cancer and doctors and choices restful for my mind.

178 Crap, I’ve got cancer 179 Hope and fear are usually specific to certain types of cancer, which in If/when it gets to the point where I’m choosing a chemotherapy, I’m choosing a chemotherapy, If/when it gets to the point where biopsy. One reason is that the Dr M said she would do a new And now, back to the malignant main event. Dr L was convinced that that Dr L was convinced main event. back to the malignant And now, encouraging, my “rapid growth” status was The canceling of memory. But may be based on my faulty So some of her assessment trial, unless someone can I do not see any reason to do a clinical clinical trials unless a drug for metastatic vaginal adenocarcinoma miraculously adenocarcinoma miraculously unless a drug for metastatic vaginal with the fewest potential debili- appears, I’m going to choose the one be neuropathy. I haven’t heard of tating side-effects, none of which will in my particular case, any better criteria for choosing a chemotherapy anyone’s guess. since what might work seems to be the on those from different be can metastases the on markers genetic (Lung biopsy carries a small risk original tumor, which I didn’t know. – .5%? – of collapsing a lung. Danamaya says they couldn’t remember what the results of my tumor sequencing had been. can fix it!) I also that remembered Nancy either. records my in wasn’t that Apparently the original tumor is “HER2 negative” which is to do with hormone - sensitivity. I didn’t remember “positive for EGFR immuno-histo chem istry.” They can do tumor sequencing on 300 common mutations. Of course when I asked if the genetic info about each of the mutations is actually useful, she said no. effect eliminates me, and Dr M said there were practical disadvantages there were practical disadvantages effect eliminates me, and Dr M said phase 1 trial. She said something to having a rare type of cancer in a against nothing.” Have a vague like, “You’d be likely to be randomized sound good. sense of what that means, but it doesn’t pressure tests etc, I found out I am an inch shorter than I used to be! be! to used I than shorter inch an am I out found I etc, tests pressure start to was supposed that I thought me out. bummed totally Which Yoga! Yoga! Yoga! 70. you’re around when can growing” at one stage, been “rapidly while it may have my cancer, I still have no symptoms. this way, because be described in no longer the have continued having I did must that the chemotherapy She said things I think that other I am inclined to the growth. effect of slowing way. no proof either Of course there slowed the growth. was doing from scans of recounting my on degree some to based was it however, - deci to seem not could they as confusion, some There was memory. the report from records, they apparently did not get pher my medical correctly when and I cannot necessarily remember the January x-ray, x-rays. The scan. Plus, Dr L appeared to despise I got what type of meeting the before if satisfying more lot a been have would experience needed, or if I in with me about what info they someone had checked had proactively inquired. apparently. My in their lungs can go down quickly people with tumors her told I year. last the for been it’s as same 98%, is absorption oxygen scan (from memory) how much the nodules had grown in the January as growth. (Only a 20%+ increase and she said it doesn’t even count tell can’t you that emphatic also was She anything.) means size in from x-rays. anything about the growth of nodules anything else. Also, Phase 2 or tell me it’s likely to work better than 3 rapid-fire science brain brain science rapid-fire massive I got a copy of Dr L’s (UCSF) report from Misha, my acupuncturist. from Misha, my acupuncturist. I got a copy of Dr L’s (UCSF) report Misha thinks my cough might be do to with allergies, which kind of It is astonishing to me the amount of information someone with with someone information of amount the me to astonishing is It ago, said they lungs and, like Dr M a month She listened to my interesting very nice and friendly. It was very By the end, she was very cautious about getting back In any case, it was good news. I am (She’s in their system and they sent her a copy.) They also sent it to Dr her a copy.) They also sent it to Dr (She’s in their system and they sent course, to me. It was good to read. M, my main oncologist. But not, of A few things in it aren’t true; as I mentioned, they are based on what I could recount from memory about scans. Some odd things in it too. Like under drug history, it says “whatever was available”. I must have written that on the intake forms! That’s not true either. makes sense to me, as it comes with allergy-like fatigue and no other symptoms. She was also wondering about “black mold” since it seems and unfortunately about that worse in the morning. I’m not sure be to February 15: Layman’s terms I talked to the medical assistant from Dr A’s office. I had called them would be rolling in … turns and asked when their recommendations to call me, and she thought Dr out Dr A thought that she was going on going to Chicago to get A would. She also thought I was planning short version: treated. Alack. Here are their chemo recommendations, Gemzar. and Taxotere called drugs are recommendation primary Their I hope I never need to. The two I didn’t think to ask about side-effects. a targeted therapy – not chemo, drugs could also be supplemented with signal called VEGS – called it’s an antibody that turns off a growth cancer and some good info about Avastin. It’s FDA approved for cervical weeks. it has come out just in the last few cancer, or anyway someone with a rare cancer, is expected to retain and and retain to expected is cancer, rare a with someone anyway or cancer, a like is oncologists to Talking analyze. hour and a half Her basic message after an clear and healthy. sound get outta here. was pretty much, You’re healthy, of talking about stuff six month period, can bring CT scan images over a Come back when you to go with them! and cancer symptoms I don’t view on my case; however, point of different getting a completely to her I’d make back to her. Of course if I did go back imagine I will go surly. less much be likely she’d and row a in were ducks the all sure They have has, or professes to have, “the answer”. Fact is, no doctor have roughly the and approaches, but they all different personalities same data. All coaster. roller fine” not is “everything and fine” is “everything the on maybe the next month or two. But information applies only to now and a bit more time than I thought. it seems at this point that I maybe have dump in which they give mountains of often undigested information information undigested often of mountains give they which in dump Trebor’s A friend of sense of it somehow. is expected to make and one decisions, you with the they would help internist said ideally who is an UCSF/SF at teaches He decisions. the with help can they how ask or sure is a hospice and I’m care and and works with palliative General doctors. patients and communicator with wonderful

180 Crap, I’ve got cancer 181 Hope and fear I’m working on a poem I started on Hridayashri’s ordination retreat, Hridayashri’s ordination retreat, I’m working on a poem I started on at around 8pm every night, Healthwise: On the retreat I crashed to another doctor, I made As much as it pains me to think of talking Life lasts but a few scratches of the claw in the sand. of the claw in the but a few scratches Life lasts Wislawa Symborska February 22: Roller coaster awareness and a different doctor February 22: Roller coaster awareness It started at 10:30 at my health Thursday was a long, long day, so tired. B. worker, social care palliative the with meeting helpful super a plan, the shorter/longer life expectancy One of the things we talked about was suggested She it. of off get to want I that fact the and coaster” “roller Very it. on being of aware be to trying it, of off get to trying than rather Buddhist advice I must say! We also talked about financial attorney, and the advance health directive. Beware of language such power of as “do what is necessary to save someone’s life”. It is very misleading. article useful the read had talked to have I people medical (Several ‘How Doctors Die’.) Unless they’re given other instructions, doctors have a legal obligation to keep someone alive, no matter how damaging, painful and ultimately pointless the methods of keeping them alive are. “House on Fire,” which I read during the final ritual. “House on Fire,” which I read during at-8pm-you-will-turn-into-an- old the placed had evil-doer an if as about the same. I have hacked up, achey-old-lady hex on me. Cough is to According phlegm. worm-shaped red, bright very small, some twice, internet entitled ‘Snot and Mucus an article from the ever-omniscient it could be a sign of bronchitis. Decoded: The Meaning of Snot Colors’, of causes usual the that says website Physician Family American The bronchitis and lung cancer. blood in phlegm in adults are pneumonia, week. He’s actually a cool guy, he an appointment with my GP for next a few years. meditates. I haven’t talked to him in I had a great time at the retreat this weekend. Friends came from came from at the retreat this weekend. Friends I had a great time plus locals. Some New York and Canada, Seattle, Hawaii, Missoula, this retreat for 20 years. I led the most excellent of us have been doing aston- an felt I it!) in people the of because mean (I ever group study appoint- doctors’ how many I thought of gratitude. ishing amount of to with me. One afternoon Dayamudra set me ments Julie has gone my room at the yoga postures. Elaine swept up with a few restorative thinking of but remember the other things I was end. I can’t actually was enormous. from my heart; the sense of gratitude they were pouring there, I felt time, well, many, many of the hours Almost the whole the verge, or over calm, happy, and grateful, and on intensely present, that I have, to do what I do, to know the verge, of tears. To have the life the people that I know. February 20: Gratitude February - what or allergist, an to go Should expensive. super is it for testing with retreat a Co-leading … and optometrist, an Plus called. that’s ever Tuesday. ’til Karunadevi fear in the OC Also, I am thirsty, it seems, all the time. There seems to be some Also, I am thirsty, it seems, all the time. There seems to be some Had a good chin wag (I love that expression, British) yesterday with with yesterday British) expression, that love (I wag chin good a Had but I do get very tired, espe- I say that I don’t have any symptoms, me Lung nodules sucking the life out of of virus Allergies or bronchitis or some kind this year) Being vegetarian (started that again and having visitors. Ordaining someone and leading retreats B saw on my medical record that I had sent an email to Dr M (re (re M to Dr email an sent had I that record medical my on saw B the As I suspected, haven’t seen in years. GP, Dr G, who I I like my February 28: Hope and This morning I arrived at my dad’s in Costa Mesa. I’m making him a better doing is He tomorrow. birthday 83rd his for tart walnut lime blood in my lungs, although I am pretty sure I am coughing less since blood in my lungs, although I am pretty sure I am coughing less since starting the antibiotics. (At one point after her retreat, Hridayashri was just as tired as I was!) Elvin at Que Tal cafe. At the end he encouraged me to be more assertive assertive more be to me encouraged he end the At cafe. Tal Que at Elvin advice. I will need to get a CT with my doctors, which I think is good I am not in a hurry to get scan at some point. Dr M is uncommunicative. what will it show? another one. It’s a lot of radiation. Plus cially in the last week. Possible reasons: February 25: Thirst, fatigue, writing will do chi gung/tai chi with me I seem to have found someone who It feels great. He’s not particularly almost every day in Dolores Park. pep talk a He gave me him! bless willing, and available but he’s gentle, him doing a handstand against the today. I wanted to take a photo of so didn’t. (He just laughed fence but couldn’t tell if I had his permission when I asked.) red worm-shaped thing I’d hacked up) and hadn’t gotten a reply. She She reply. a gotten hadn’t and up) hacked I’d thing worm-shaped red ask and GP the to over I go suggested who assistant, to Dr M’s talked Monday. than rather now him see to better it’d be thinks him if he hours five about for center health the at was I meaning up ended Which caused That purse! my forgotten had I (Also pharmacy.) the (including out of.) Tong bailed me which thankfully most of some complications, bron- the of shape the in are they because worms resembles phlegm red and asthma in ejected from. Since I have allergies chial tubes they are or bronchitis. my cough could be caused by either, my family, he said I am taking antibiotics for five days. If which two, other the of one be to seem would it doesn’t, it If bronchitis. coughthe goes away, it was saying my a ‘cure’. Dr G questioned my oncologists’ I guess don’t have that, he asked? (I to cancer. How can they know cough was unrelated by constriction in my cough is not directly caused wonder if they meant unre- it’s saying from different is Which tumors? the to due lungs my to Dr G and and spaced out by the time I talked lated.) But I was tired up with things in some of his questions, or keep couldn’t really answer general.

182 Crap, I’ve got cancer 183 Hope and fear Whenever Whenever I had a wonderful day yesterday. It started with an hour of chi of chi with an hour It started wonderful day yesterday. I had a being healthy, healing my lungs at Misha’s, I visualized On the table to do this all the time: Maybe While there I thought, Ah, I ought are we that know I interesting. is course MBSR the Co-teaching after myself in various ways. I spend much of every day looking I cough or I’m tired or whatever, some small voice in me is saying, Is small voice in me is saying, Is I cough or I’m tired or whatever, some What if I went into, or am says, it it cancer? Is it happening now? Or yet another part of me hovers some- in, remission? What will I do? And where else, immune to hope and fear. than I thought he was. He is sometimes repetitive but in other ways he he ways other but in repetitive sometimes is He was. he thought I than night tomorrow L.A. for head will I and Laura sharp. mentally pretty is to New Orleans. the train and fatigued nap upon my Teng How, a short tennis court with gung at the co-teaching I’m course MBSR the and acupuncture, for Misha’s return, it makes the chi gung but body is sore from and Allison. My with Bill me feel great. energy coming to me from the universe, and briefly White Tara- (arche my above appeared things) other among wisdom and life long of type to do moxa and with the guy, Drew, who came head. Then I bonded let I that asks moxa doing person the Usually needles. the out take because of too hot, but it never does, I’m assuming them know if it gets there is feeling … does it mean it did get too hot numbness. This time They do seem feet? Or was he simply less timid? coming back to my to say. But I felt changed it is very slow so it’s hard less cold. If it has Drew, who gave I was there and had a great chat with very happy when there, gotten ever I’ve that least (at massage foot best all-time the me possibly ever!) find a photo of healthy lungs and visualizethem all the time, imagine we “scoop up the energy” doing chi same way that healthy energy, in the course I haven’t done it since then gung, descending into my lungs. (Of but thinking about it was damned inspiring.) anyway. task the to up are who people well, deal, great a people helping What’s interesting is how my confidence in myself waxes and wanes. and fraud a or fuck-up a I’m if wondering between alternate of sort I doing are we how (and doing are we what by inspired incredibly feeling late for me, and the second half it.) The class however is incredibly at around 10pm. Anyway, I’m especially I was very tired. I got home here now. including me, have very strong opin- People, including doctors, no doubt not. or helped, that done, have or doing, I’m what about ions Separated 18 March 2009 Separated from love, I access only Other people’s words. Mine are locked up agency Perhaps in imagined to say As if to open, and The word “opening” Were the same. Deepest longing Cannot be uttered, but Only painted As a window shutting Out rain. Like others divided I stare mutely skyward, The wish sticks to my tongue. Water slides over my eyes. I would like to say But won’t, that It’s unbearable, This centrifuge, This disease. Yet I remain. Seeking what is essentially Gravel. Painting it. Raining. Rising and falling From this canopy Of fictions, Landing Safe and unsound On the ground.

184 Crap, I’ve got cancer March 2013 House on fire March 4: Paulette, Dad, Laura and me. Dad is modeling the jacket I gave him (and got all OCD about ’cuz I was worried it’d be too small) 187 House on fire House on Fire I. It takes a while To see the simplicity of A sooner not later Goodbye life Ah, but here are Alternatives to simple As when one lies down In a closed room And smells smoke Do I open the door? Finish the book? Scream for help? How to overpower My bewilderment Again and again, I wake up. The walls are hot. No crashing, no sirens Just a kind of wrongness Unnoticed by Public servants The greatest Nightmare is this, here Watching the one episode That burns, that gnaws White sheets … red eyes … Now is too much to bear. Lotus Sutra. March 1: House on fire March 1: House Here’s the poem I wrote recently. Some of its influences include:flat and our its occasionally disabled smoke alarms, the carbon monoxide Sutra”, and center, John Giorno’s poem “Suicide detector at the retreat the II. choices. are two Here them do one of us must All of world is pried Either the fists From our go Or we let a sense of control If only: of choosing my fate If only: of I can find In every now that of The thing to let go Is me One of the other things Is you III. My house Caught fire I stroll outside With the sky Having a cold drink or sorbet makes me cough for about an hour.Having a cold drink or sorbet makes A point I may have made before: Lots of other people are already Strong scents, detergents – things other people wouldn’t notice – make– notice wouldn’t people other things – detergents scents, Strong Well.now. is body my how for word a That’s Touchy. cough. or sneeze me … tight. Scarred. Temperamental?My upper body. My lower body is a big deal in the grand scheme ofMaybe it’s all touchy. None of it is beenIt’s anyway. adjustment an or me, to deal big a is it suppose I things. having a body that protests so muchover a year but I do not feel used to heat). or conditioning air smells, (food, situations response to ordinary in - dealing with what I deal with now. I did not have access to this infor mation before; apparently there are secret societies in which common health complaints are shared. People my age and younger, and of overac- bowels, uncooperative backs, lower achey have too, older course tive bladders, numb and cold feet, inflexible hips, problems with lady parts, and/or allergies and coughs and environmental sensitivities. The March 4: On the Sunset Limited to Louisiana March 4: On the Sunset Limited I have missed some key parts Taking the train was interesting, though needs One exercise! and meditation, naps, as such routine, usual my of to have, I than creativity more or space, physical of amount certain a slept in and I went to breakfast on do these things. This morning Laura communica- on seminars does who woman a from across sat I own. my very cool. We talked about brain tion between men and women. She was exercise has an effect too! plasticity and she pointed out that imagining Grandparents the dining car. with people in interesting chatting It’s cowboy a Bought Oregon. Salem, from vegetarians Wisconsin, from type hat with a wide brim in El Paso.

188 Crap, I’ve got cancer 189 House on fire

It seems like people tell me these stories about outliving the doctors’ about outliving the doctors’ It seems like people tell me these stories He did talk in terms of “when it is your time” which I find kind of My favorite thing yesterday My favorite thing run by a white the Voodoo Museum, was me that 30 years ago he had been We got into a conversation. He told It was fun being at dad’s for his 83rd birthday. He is a sweet old guy. old sweet a is He birthday. 83rd his for dad’s at being fun was It predictions because they want to inspire hope. It sometimes seems like hope. It sometimes seems like predictions because they want to inspire therefore it will happen to you. they’re saying, This happened to me, outlive a grim prognosis, this angle While it shows that it’s possible to nothing absolutely says it because me for inspiring not is things on about the odds that I shall do so. What seems much more a sign for me, in particular, is my continuing good health. Though even that has only been three months so far (since the grim December CT scan). comforting. Not in a deterministic kind of way, i.e., that 4pm on some particular date will absolutely be my time, more that at some point one’s body is going to need to die, and no amount of juju or chemistry is going to change that. And, if it doesn’t need to happen, it won’t. guy/voodoo priest. He gives a little introductory lecture on the way in, the on lecture a little introductory gives He guy/voodoo priest. debunking all information formerly and erroneously possessed. At first offerings, carvings, of full little rooms two seemed like just museum the etc., plus dirt of Voodoo, Marie Laveau, gris-gris, framed explanations time. some for and I lingered there in something I felt But then and dust. all done and sitting outside) but I was alone (the gals were For a while I made a there. I felt good in alone. I was like some way I did not feel in some in wrapped dusty tree stump – a wish into a gnarled offering ritual I way out. the on (mostly handmade stuff) a little store There’s coins. would think of as a voodoo doll, but picked up something like what you wish for charms they are meant as of moss, Made mostly out wasn’t. fulfilment. I felt drawn to one and picked it up – the man said the one for someone who is terminally ill. I chose was for impossible situations, detectable so is cancer Because cancer. brain terminal with diagnosed bodies human in goes and comes just that thing a it’s if wonder I now, often so hear you why is which about, know don’t doctors that way a in live, etc., and minutes to two told she had was cousin My things like, early detection for breast cancer it’s been ten years. You also hear about some of whom don’t need it. causing more people to get treatment, March 6: “Belief in” and voodoo “Belief in” and March 6: I – in a Julie, Laura and now – Paulette, in New Orleans We’re all Street Canal the to next right Midcity, in house old restored groovy though it, of smell the just Even revolting. is Street Bourbon streetcar. if it can be called smell is. It’s an intense culture, I can’t say what the standing outside sex and booze. Eg. an old guy that, of in-your-face “My Tongue into a bar had a t-shirt on that began, trying to get people other day said she bartender at the absinthe bar the & Your Clit ...” The taste of it. One is drunk because she doesn’t like the chugs alcohol to get Big Sleazy instead of The Big Easy. tempted to say The - main requires between, time or some or early, in life, late either body, the mind, pile before into a crumbles forethought, demands tenance, it. to acknowledge the mind forcing that do not that do not (in the sense of seeing physical matter matter physical seeing of sense the (in I know that many people think in terms of “believing in” something, something, in” “believing of terms in think people many that I know rooms few dirty the voodoo museum was a of view, point one From mind, overdeveloped in many of Anyway. In addition to the rational I suppose that’s called animism, I want to relate to the world as alive. or not. For instance, you could conclude, because I connected with the the with I connected because conclude, could you For instance, or not. in” I “believe that museum, the voodoo are at they or whatever icons any in spirituality of can’t think people Some magic. or voodoo saints to strange very language is of kind This besides belief. framework other - or voodoo or bodhisat in” God or saints it mean to “believe me. What does most people tvas? For them to be that one considers I think it means I’m say, to a chair. in a similar way, existing’ real, ‘independently sure God.” says, “I believe in when someone what is meant this is usually metal. That was of inanimate lumps of wood and containing a bunch I and that way it see to it makes sense view, though of point my not to is point this at me for natural and right feels What that. understand of some a presence had they if objects – as – plants, world the to relate “materialist” a being Not kind. forces. … also are there culture, materialist hyper-rational, our by us – these are forces that Desires, instincts, hatreds, the unconscious as within us – or beyond us – but simply exist. They can be thought of this in is (It mind. rational the of part not mostly are they case any in causes of the idiocy mentioned a realm where we perhaps discover the other states of mind and attitudes few sentences back.) There are also the surpassing words, beyond move that – clarity love, equanimity, – not to be disparaged; it is an impor- rational mind. The rational mind is everything. As Hamlet tant level of experience. It can’t understand are than Horatio, earth, and in heaven things more are There says, dreamt of in your philosophy. which will, again, be defined in terms of beliefs I don’t have. There are a self-centered, literal, contracted energies that are not accessible to and in cultivating a mind that mind. I am interested in those energies I what if care don’t I influence. can they Sometimes them. to receptive is it doesn’t matter. What I believe am relating to is ‘out there’ or ‘in here’; is that the jumble of thoughts and beliefs that zoom around in our heads own are in fact hypnotized by our We importance. primary not of are thoughts, many of which don’t do us any good at all. In fact they often make things more difficult than they need to be. I believe that what’s what motivate that states mental the and do, we what is important we do. Everything else is, perhaps, as the Hebrew Bible says, vanity, striving after wind. as the only reality, that everything can be explained in terms of matter matter of terms in explained be can everything that reality, only the as in” ghosts or rebirth doesn’t mean I “believe and physical phenomena) realities I do have a strong sense of felt or Apollo. However We beautiful. is mind rational The science. of purview the under exist complex and many things, we can have extremely can understand so a is this and strategize, and situation a evaluate can we ideas, useful human (though in many ways large part of what makes us uniquely collectively speaking we are also idiots!)

190 Crap, I’ve got cancer 191 House on fire Teaching the Stress Reduction class with Bill and Allison last night with Bill and Allison last night Teaching the Stress Reduction class My mom, who has Alzheimer’s and lives in southern California, Lots of “Buddhist converts” get weirded out by ritual practices that practices that converts” get weirded out by ritual Lots of “Buddhist wake up tired! last night, and finally I do not Note: 11 hours sleep Orleans New yesterday: tour from (Quote fun. having are We Note: March 14: Hair and darker. I owe it all to chemo- My hair is slowly getting thicker short. so still it’s ’cuz tell really can’t I too. wavier, be Might therapy! hair Last time I got a haircut was 14 months ago. It’s delightful having again, and I think it’s better short. was good. I was really enjoying Bill’s teaching. The class is 7-9:30 pm and I felt so tired during most of it I could barely function. (I don’t think it’s about how much sleep I get, because I get plenty and take naps well.) very think can’t I time. the it’s somehow think I to. need I when I have been thinking about looking into offering a class in the fall, but wonder if I’ll have the energy for it. Thankfully was hurt. one no Thankfully window. storefront a into drove March 11: Back by the bay I didn’t like New Orleans. I loved Some people got the impression that I loved the food (just that it is it. I liked the culture and the history. museum, voodoo the loved I vegetarian!) not and fattening, unhealthy, our bicycle tour … It’s good to be the street car, wandering around, and with their bucket lists. How do they home, too. All those cancer patients find the energy? Loads of summer plans floating around, which I won’t A couple things I have said in go into until some of them settle down. as myself of think now I that realize me made have days few last the more years. A change I will regret? someone who’s going to live for a few idea or another about a life expec- Can’t do anything about having one CT scan. tancy anyway. Except, maybe, get a March 8: Notes March two Americas are that there to mention I forgot “belief”. notes on More in terms of childhood influences. One America ascribes to the religion or reliance on science, of any kind, mind, no spirituality of the rational belief America, another For science. of version media’s popular the on of mode this In primary. is general, in belief say would I and God, in judge, omniscient an in belief on reliant aren’t that systems thinking, of the was more My background general, are unfathomable. or belief in to say. probably don’t need former, I ‘rational’ or, on either because it’s not remind them of Christianity, This is level, because it has negative associations. a more emotional elements and in the west has removed ritual why much of Buddhism (who think secular, to the degree that people appears as completely a religion or a must often ask, “Is Buddhism they are being original) aren’t inherently other hand, devotional practices philosophy?” On the one’s state of mind is primary. useful; in Buddhism rented We Louisiana. in day last our is Today ‘funeral’!) in ‘fun’ the puts Park. a car and are driving to Jean Lafitte

I was coughing like crazy this morning, finally hacked some up Renunciation, or letting go, has long been an important part of the been an important part of the Renunciation, or letting go, has long not sound exciting – perhaps Buddhist tradition. While the idea may want to renounce – the practice reminding us of all the things we don’t we let go in some way every is intrinsic to spiritual practice. Really, in some small way, into our time we meditate, each time we see, even how we know – and can relax in relationship to our world. It is part of – are ours. Letting go, releasing the knowing – that nothing and no one to truly grow, give, understand, our clenched fists, is what allows us and love. and bodily exploration of The day will be a mostly silent meditative some of which will be lightly letting go. We will do sitting meditation, as a body awareness, chanting, guided, and other useful practices, such and gentle movement. in renunciation, relaxing, Suvarnaprabha has been deeply interested since she was diagnosed with and letting go for a long time – especially has taught courses and retreats metastatic cancer over a year ago. She as internationally and at SF at the SFBC for over ten years, as well for stress reduction in the County Jail. She also teaches meditation a memoir of the last year, wider community. She is currently writing this practice day’s themes. exploring, among many other things, March 17: So many ways of being old I have felt unhealthy since I got back from New Orleans. Again, all the plans I was making, especially teaching an MBSR class on my own, I’m sure that now I don’t have the energy for them. I cough a lot and it hurts my head. I am tired, whether or not I can sleep. Of course my diet health in change The enough. exercising been haven’t I and south went Singapore in Cull with Skyped I When this. of because simply be could the other day, she was hacking her little head off too – allergies. Last night I took a Claritin before going to bed and I seem to feel better this March 16: Day retreat – renouncing and relaxing: – renouncing and relaxing: March 16: Day retreat led by Suvarnaprabha bloody phlegm. (Very little blood, like one drop.) It’s hard to cough up cough up It’s hard to blood, like one drop.) (Very little bloody phlegm. to me that at it takes a lot of coughing! It occurs blood, it feels thick, for: fatigue, to look out was meant I symptoms the the moment I have loss and short- were weight (Other ones blood. coughing, and coughing tired, they’re says to talk I everyone hand other the On breath.) of ness traveling? I’ve cancer, teaching, dust allergies, too. Am I tired from It’s all guesses. since October. I don’t know. been traveling continually my cough stays this bad for a while. I’ll go to a doctor if March 15: News in the last two days News in the last March 15: and friend’s mom. Allison as did another went into hospice, Bill’s mom wife of Chris, my dad’s class Wednesday. teaching the MBSR I will be biopsy on Monday. is getting a lung 30+ years, again, Laura’s going to make sure she doesn’t drive anymore. Whew. Whew. anymore. drive doesn’t she sure make to going Laura’s again, May. in 80th birthday for her there going down We’re

192 Crap, I’ve got cancer 193 House on fire My latest development in the decade+ of aging that has taken place place has taken that decade+ of aging the in latest development My My fingernails and toenails were also chipping and falling off ina It wasn’t perfect, but it I enjoyed leading the practice day yesterday. Someone gave me the book The China Study, which essentially I I’m Tomorrow about allergies/asthma. Danamaya with chat Helpful as you had hoped. Tired. Sorry if this post wasn’t quite as riveting March 18: Some relief today for an hour and a half. I spoke with the palliative social worker Health Care the Advanced about form, POLST talked about the We that mentioned I plan. health my at works hospice how and Directive, I don’t think my recent intense coughing is from cancer, but that one - always wonders. One of the things she suggested is calling Dr M’s assis tant and asking her if there is a way I can tell the difference between a a was That else. something by caused cough a and cough cancer-caused good idea (though there might not be an answer). That social worker is worth her weight in gold! morning, but who knows. There is a lot of construction around my house house my around of construction a lot is There knows. who but morning, I (However, to. I am allergic which lot of dust, been a there has and started real coughing again my Then too.) other places while in cough … next door they started construction or close to it, that on the day, healthy always had very is my teeth. I’ve in the last year in my body in six me not to come back my dentist told couple of years ago teeth. (A receding can see my gums a year.) Now I a cleaning, to wait months for different, totally is mouth my in taste The discoloring. teeth my and my of out taste the get to is time the all thirsty am I why think I and Short version: happens though it does get diluted. mouth, which never Whole with my teeth have gotten old. Healing in the last three months, morning. with baking powder, which I did this Foods advises brushing My mouth felt better. what aging is, At least I have groovy hair. Is that new way for a while. is full of it? For maintenance until your entire day more and more body occasionally, then to do is take a shower and eat a while all you have and hair on your toes and yoga and teeth problems it’s medicine on the and herbs and and asthma and medicines and teas face and allergies and that … it takes all frickin’ day. supplements and exercises for this is something about teaching which was what I was able to offer. There I really enjoy but I also find very challenging. It’s not exactly the same to be liked. Yesterday I was as, but is perhaps derivative of, wanting I enjoyed being outwardly focused. not at all nervous which is unusual. while I don’t think there’s any think says to be vegan. I realized that useful or news to me, I certainly more nutritional info that would be of diet. Keeping very strictly need to be reminded about the importance whole grains – low fat might be low glycemic index – vegetables – yet, these things are likely a big beyond my capacity for discipline. And relatively healthy. part of the reason I am still alive and off with bleach (they my windows and wipe going to buy a mattress cover started vacu- Also and see what effect that has. the inside), are moldy on gotten to my room yet. uming and dusting today but haven’t (And of course I don’t think most of what that person person that what of most think don’t I course of (And

Anyway. Whatever I know in my head does not necessarily translate does not necessarily translate Anyway. Whatever I know in my head I’m back home now. I still want to wash curtains, remove a layer of Many of us are very opinionated about food, thinking that what about food, thinking that what Many of us are very opinionated After talking to her and having falafels with Tong, I felt completely completely felt I Tong, with falafels having and her to talking After feel I could for help cleaning, but didn’t really I could have asked into what I feel like eating, or what I am willing to prepare for myself. I am willing to prepare for myself. into what I feel like eating, or what I’m hoping Junger’s program will get me on track. I want to ‘reset’ so that I start craving things that are actually good for me again. This to me is the motivation to do a ‘cleanse’ or a special diet for a while. carpet, and dust more but so far the crazy coughing in my somewhat something feel still can I OK. be to seems bedroom moldy and dusty less when I am in this apartment … maybe congestion but not to the point of coughing … eats is actually food!) I’m sure I am just as opinionated as ‘the next guy’, just as opinionated as ‘the next guy’, eats is actually food!) I’m sure I am what other people eat. Really, but I do try to reserve judgment about ideas about it that we get tangled it’s none of my business. It’s more the another asserts is not … And up in. What one person says is healthy, we are confused about what the preferences are intense. As a culture habits good and the bad of eating eating. Ideas about the we should be sweep through America in waves. other people eat, or their ideas about health, are simply stupid. A friend health, are simply stupid. A friend other people eat, or their ideas about eat not just meat”. Why “fake who like us those of recently scorned friend a noticing before mentioned I’ve asked. testily rather was tofu?, on the food I’m eating as “Hm. commenting (without joy, let us say) healthy.” Looks March 20: Thoughts about food a ‘cleanse’ I’m reading Clean by Alejandro Junger, MD, which describes recom- it and done have friends possibly soon. Two do to am going diet I Master Cleanse” but I feel that, mend it. Some other friends did “The gentler than that. considering my condition, I want something wrecked. wrecked. (In truth I have felt wrecked for the last five daysor so. I can - a hypoal and bought Beyond Bath and to Bed, I drove function.) barely my bed home and lay on covers. I came mattress and pillow lergenic cover was challenging! on the mattress move much. Putting unable to crap in edges, geez so much and shelves and my carpet And I vacuumed away yet! I pulled stuff from New Orleans even unpacked there, haven’t careful being super them with bleach, windows and washed from the dark clothing. bleach on my perpetually not to get and otherwise out my crappy old carpet-layered ask someone to clean if I will be able dusty moldy room. I do wonder cramped and cluttered to go on for The construction next door is supposed to keep living there. sills is “toxic that the mold on my window a year. I’m also concerned it, it’s still bad for say that even after you kill black mold”. The websites are lungs compromised and allergies with those that say also They you. terrible in that … I don’t know what it is, but I feel the most affected make my eyes few days. Now I’m at Julie’s. Her cats house for the last I have hardly new) but other than that I’m golden. itch a bit (that’s also I got here. coughed at all since

194 Crap, I’ve got cancer 195 House on fire class last night. It was a big yet subtle change change subtle yet big a was It night. last class At the practice day last weekend, I almost completely dropped it. It’s completely dropped it. It’s At the practice day last weekend, I almost degree of fear or nervousness Over the years I have often had some (Mindfulness (Mindfulness when I was walking to the MBSR Something happened so simple (but I assure you the process of getting there isn’t!), but I felt felt I but isn’t!), there getting of process the you assure I (but simple so a little underprepared. In some way I felt quite baffled aboutwhat to no fricking idea. It just happens, do. How to help people let go? I have it was on the Center calendar, a you can’t make it happen. But there letting go. While leading it I knew description of sorts about a day of I was simply offering what I can there was nothing to worry about. that I can do. There were a few offer, since there is nothing more than arose, this is not good enough, times during the day when the thought of a cage. Several people have told but I let it go. It felt like stepping out got a lot out of it. I’m happy that me they really enjoyed the day and some people feel they benefitted from it; in a way, my attitude toward it stays the same. of habit a with Coupled situations. some in least at teaching, around to opportunity little been has there ahead, plowing and fear ignoring examine it. So walking to the MBSR class, there was a paradigm shift. some- offering of gift, a giving of terms in class the of think to resolved I gift the whether about now right do can I much nothing is There thing. is accepted, or even the quality of the gift. The gift is something about practice, based in my own experience, that I am trying to communicate. The experience of teaching, or probably anything, is painful (some of with mostly wordless content that isn’t really possible for me to for me to content that isn’t really possible with mostly wordless I noticed that try to articulate … During the walk describe, but I will every class I usual dread and resistance. And after I was feeling the time, but literally so glad I did that. Not just this think, that was good, same change of feeling. Suddenly for years, this same feeling, and the I everything much pretty before happens It this? is what … thought I is it? And something unraveled. teach, almost a feeling of doom. What being about Something thing. unconscious and murky and deep A an energy below the surface, good, or good enough. Though it is subtle, is tight and dark and completely I felt the locked-in quality, how it self-absorbed. March 21: Discoveries 21: March what From Dr M. works with who to the nurse I talked morning This dust, out (clearing them helps what and symptoms my of described I allergies it sounded like she agreed that taking Benadryl) mold, and cancer and that acknowledging While me. plaguing been have what are fatigue, (in my case, the same symptoms can share some of allergies asso- kind of symptoms she said the and coughing), chest congestion ciated with cancer are: perpetual difficulty catching breath, difficulty kind of trouble with any and a lot of because of coughing, lying down send an email I do not have any of this. She said she’d physical exertion. don’t sound I know that to most people, allergies to Dr M and my GP. rather been has really It cancer. to compared especially anything, like a got and bit a up things I cleaned since better it’s though debilitating, mattress cover. Reduction) Stress Based

biology of beliefs The murky I’m-not-good-enough attitude was fascinating to explore. fascinating to explore. attitude was I’m-not-good-enough The murky ology environment and your biology Beliefs act as a filter between the real to select genes that are inappro- … If your beliefs are off, you’re going the beautiful part: we can remove priate for the environment … Here’s the filters that interfere with our lives. March 26: The March 25: Oncology avoidant no more March 25: Oncology We are in the from Singapore for spring break. Kathy and Paris came Monday on clinic allergy the with appointment an have I mountains. out my cough M on Wednesday. She wants to check and one with Dr At panicky. little a feel me makes It Yikes! x-ray. an get to me for and That was sweet! for a few months. least I got to be oncology-avoidant that One suggestions. and video book, movie, of amount I get a fair of Beliefs (on was the documentary The Biology caught my eye recently Youtube) with Bruce Lipton. After a detailed and well-illustrated delving environment. genes get activated by their how shows biology, he into cell how the content of that environ- He then moves to, but does not show, ment must be comprised of one’s perceptions lack were cells for a bad environment mentioned that create he factors or beliefs. The specific from near the end of the film: of love, and stress. I transcribed this ) to the exact degree that it’s about about it’s that degree exact the ) to dukkha term, the know will you care don’t you that Not level. any on or kind any of affirmation needing that brings in a way you care more that out of it; get something if people more freedom. occurred way of being. It left a much freer under scrutiny and It melted have I ego, as same the is Buddhism in which anti-ego, much how me to It seems all these years. some of the time, teaching, at least brought to being. at least for the time has changed a bit, that this The explanations of cell biology were excellent, and I liked the emphasis excellent, and I liked the emphasis The explanations of cell biology were can on the power of the mind. His angle on it is very positive: you change your cell environment. But change your perspective and thereby is attitude bothers me. I don’t the implication that the cause of disease the by degree some to cured, and caused, are diseases some that doubt caused to some degree, and mind. I don’t doubt that there are diseases them. of medicine, or lack activity, and nutrition, physical by cured, environmental toxins, genes. I Other factors I can think of right now: people for getting sick, but rather don’t think the guy is trying to blame encouraging us to be more aware of the effect of the mind. However, the implication is there, and it yanks my chain. Surely one’s beliefs cannot be the sole cause of disease. March 31: More things people say a drinking I’m great. really sounds It downpour. Sudden pm. 1:17 I smoothie made of berries, mango, kale, spinach and misc. powders. haven’t done the full-on cleanse yet because I haven’t read the book.

196 Crap, I’ve got cancer 197 House on fire bed.

From my point of view, this this view, of point my From

The issue of whose fault it is being sick, or assuming anything has anything has fault it is being sick, or assuming The issue of whose say to someone who’s dying or On the other hand, what does one for to married been has dad my who Chris, stepmom my Sadly, Bill and with We did the MBSR daylong yesterday. It’s great working I realize that I am waiting for one of two things: of two one for waiting I am that I realize Either could happen. #1 more likely? It’s very limbo-like, and not in other Among England. in friend a from mail the in card sweet a got I psychosomatic causes, is touchy for me. I am surrounded by very kind by very kind is touchy for me. I am surrounded psychosomatic causes, my own cancer, not to accuse me of having caused people who tend they know why I do notice that people assume however sometimes through his (he got the attention that he wanted someone got sick so quickly she really have developed symptoms illness, or how could the cause of Or ideas or models that attribute after getting diagnosed?) upsets way this in illness else’s someone Judging mind. the to disease me, it doesn’t even have to be my illness. and story, Dickens a of out if as selves future our at look We sick? There is a Buddhist ceremony maybe start babbling to the spectre. won’t go which I about spiritual friendship) or kalyana mitrata (called two Order members. In my case, into detail, but just say that it involves Order members, which I’ve never it was suggested that there be three plan for when I’m dead! I decided heard of before. Obviously a backup it’s way a In so. do to tempting was it though personally it take to not as much about the effect of my better for me too, then I don’t worry death on other people. cancer. She is feeling very poorly 33 years, was diagnosed with lung my dad, who needs a lot of help now and having a hard time managing and possible treatment is still these days. Much about her condition know to me helped however, has, It upsetting. very is it but unknown, see to like would I example, For me. about felt have people how more she needs. What she needs is help, her, but I’m sure that is not what some (Perhaps sick. is she because visit to moved are who people not and it depends on how much of an people who are sick love visiting, energy drain it is for the particular person.) Laura’s going to be down some that do can I hope I days. few a for out them help to tonight there commitments. other and visitors energy, own my on depends it but time were people’s faces changed how seeing part was best and the Allison, gentler and more relaxed. But I just barely, if at all, at the end, so much what I did.) Today, is had the energy to do it (or around 1/3 of it, which my head hurts when I cough and I am spending a lot of time in is like hearing, “After you cease to exist, blah blah blah blah.” (I was blah blah.” (I was you cease to exist, blah blah is like hearing, “After people things the of some fascinating, It’s that!) wrote I when laughing any case, I love getting letters. say/write to me. In 1. To develop symptoms, which will escalate for a few months until they they until few months for a will escalate which symptoms, develop 1. To or, kill me; partly Trinidad (but maybe game you play in of the fun dance the sense like that?) you.” miss really will “I said, it things, 2. To not have developed symptoms for the number of months that indi- of months for the number have developed symptoms 2. To not know that number). in remission (don’t cates I’m Awareness and kindness correspond to the two main ideals in Because there’s so much pain in the world. This has not changed So in our quest for kindness and understanding, we need to get in I am very aware when I am not feeling kind or I am having uncharitable uncharitable having am I or kind feeling not am I when aware very am I thoughts. It’s a definite physical sensation of hardness or tightness in my heart. Take a minute and think about where you feel non-kindness. you are not feeling kind? What is a sign that Buddhism: Wisdom and Compassion. The Wisdom and Compassion of a Buddha are perfected and unified, meaning that they are an intrinsic part of each other. Wisdom is not compassion divorced from wisdom wisdom is not without compassion, or compassion, at any rate and it awareness of terms in more thinking But compassion. Buddha’s a not is and kindness can bring things down to a level we can relate to. We may more little a be always can we but wise, or compassionate perfectly be not aware, a little kinder. This is how we plod along in our practice, with a most the is this that think I love. more little a understanding, more little important, seem doesn’t it when even do, to world the in thing important perhaps especially then. since the time of the Buddha. People insecure being hasn’t changed. Things confused are more organized now, and the numbers angry and other, each and nature from alienated more probably are We bigger. are could people dreamed ever Buddha the that self-loathing more have and have. This is why Naomi Shihab Nye’s poem tells the as us sorrow know must you inside, thing that deepest the as kindness know ‘Before you other deepest thing.’ separate- of sense own our of form the in especially suffering, with touch away shrinking not least, At it. know to Get craving. or intolerance, ness, from it. We retrain our impulses by bringing This them is into an mindfulness. important part of kindness. And we realize, Ajahn Amaro says, that even a headache has its place in nature ... eventually, as Constellations of kindness Constellations of 20 September 2008

198 Crap, I’ve got cancer April 2013 Officially dying April 4: Needle face. As you can imagine, it is not easy (or sensible) to take these photos with needles in my wrists! 201 Officially dying touchy. I can’t be around people wearing The allergy tests were extensive. I seem to have fewer allergies than to have fewer allergies than The allergy tests were extensive. I seem of cedar trees, certain grasses, I am moderately allergic to the pollen of shortness for (one inhaler of kinds different two me gave She So: my lungs are officially perfume or cologne, cold air, I can’t tolerate incense or any other kind perfume or cologne, cold air, I can’t tolerate incense or any other kind of smoke, so many things to which the lungs, as Nancy Reagan used to suggest, Just Say No these days. Yet, I had a Hagen Daaz chocolate ice cream bar today. It was good, and it did not make me cough. I had 20 or so years ago when I received a much simpler test. And, even a much simpler test. And, even I had 20 or so years ago when I received believe don’t almost I mold. or dust to allergic not am I shocking, more and an allergen. irritant an distinction between made the The doctor it! People symptoms. increases quantity the irritant, an with said, She don’t tend to be as sensitive specifically to the quantities of allergens. will set you off. I don’t know. Still, (Almost) any amount of an allergen plants. I may get them out of my dust hangs out on books and house room anyway, because it is definitely an irritant for me, as are many other things. of pollens tend to be around from and ragweed. That’s it. These kinds months that I’ve been coughing April to October, exactly not the aller- by caused not probably is cough my said She present). to (January but this would explain why it’s gies. It isn’t in any way a bad cough, when it gets worse!) about the same all the time (except something … and spray, nasal day), a twice use to steroid one breath, what see and me, gave Misha rinse nasal the with start just may I else. that does. If my cough isn’t caused by allergies, what might I hope to gain from taking all these meds? April 1: Allergies please April 1: Allergies lung blah-de-blah four hours getting allergy and Today I spent about each one) and a wait at least 15 minutes between tests (you have to beautifully a read I periods, waiting various the During x-ray. chest Death”. Peaceful a of Making “The called long), (kinda article written am grateful for.) values with my siblings, which I (I think I share have don’t probably I so (FEV1=98%), normal is capacity lung My tissue between told me the nodules may be in the asthma. Danamaya still appears to be the case. The doctor said my the airways and this from now. After as I hope Dr M will say two days lungs sound clear, increased to 106%. (Don’t ask me inhaling albuterol, my lung capacity feel irritated, and I imagine it’s how this is possible!) Now, my lungs be seriously short of breath to use the albuterol so I’m going to have to that stuff. Because she’d heard I had talked to the social worker, and my GP, GP, worker, and my talked to the social she’d heard I had Because People Well. healed? or cured, be to going was I think really I Did healthy eat I Well, loss. weight my about concerned was she first At same suggested roughly the who She did talk to Dr C at UCSF, Do I want to do chemotherapy? If only I could find out exactly why April 3: Was that good news or bad? or news good that Was 3: April they say that isn’t to Which life again. to my attached I got all Crap, that … just like that anything or of a watermelon the size a tumor found gotten a seem to have x-ray, the nodules the somewhat fuzzy based on to be is that there seem that kills me (yes) But the part little bigger. new ones. expected. M Dr than healthier much am I cough, a about nurse, the and She had. they than more grown have to nodules the expected also She And yet the same so healthy, etc., I made her day! said that, by looking depends on what mine. Just goes to show, it all info seriously unmade the stayed have to nodules the for expecting was I expecting. were you (maybe, the CT slightly. I was right about that same, or to have grown that there would sure), but it never occurred to me scan will show for be new ones. A few hours after we left her office, it hit me like a ton of again, stage right. bricks. Enter Death, But candidate. reasonable a like seem I time. the all happens it me tell that’s not the I remember that almost all the time, dammit, why didn’t like saying, Hey, why odds are odds. Really it’s way it ends? That’s time! You’ll win the lottery, happens all the that as much before, so why not? food and exercise, and I wasn’t doing they sometimes but appetite, their lose patients sometimes said She anyway, ’cuz their bodies can’t eat a normal amount and lose weight weight. lost I’ve why is cancer Maybe food. the with anything do to seem are teeth my and dry is mouth my Why cough. I Why tired. I’m Why seems why, but today not sure I’m one knows. not. No Or changing. to die. much more than before like waiting Avastin which was just approved drugs as Dr A. Especially one called ‘targeted agent’, something about it by the FDA for cervical cancer. It’s a with people think I studies, the In tumors. to supply blood the off cutting three months longer than those ovarian cancer who took Avastin lived all that great! She explained, without. Which we thought didn’t sound than longer lived some So group. the for mean the is months three that statistics here. She guessed chemo that, some less. Tenuous grasp of that the cancer decreases in had a 15-30% chance of working, meaning is response’. Come to think of it, size by a certain percentage AKA ‘there or a guess for me in particular. Alas. I don’t know if this was an example do to want I Do that. of more do and slowly growing are tumors my this (love botheration the where point the to up only but chemotherapy word, possibly coined by Danamaya) ceases to be worth it, then stop? She said most, if not all, of her patients want to be on chemotherapy all treatment any get not and etc., relax, just to wanting my that time, the makes me “one of a kind”. Really? More comfortable on chemotherapy? go people? Anyway. I don’t know what to do (other than are these Who buy a mint IT’S-IT from the corner store.)

202 Crap, I’ve got cancer 203 Officially dying to be fine, that is problematic, appear fine, or I want to Today for the first time Misha’s,at she asked me how am, and I Need to finish all the damn paperwork, that will be a great relief. today. Danamaya came over I had some very sweet conversations what it will be like. I don’t know I can’t imagine dying. I don’t know I’m glad I didn’t think to ask how long she’d guess I have to live. I’m I’m live. to I have guess she’d long how ask to think I didn’t glad I’m Hoaxes and gumption going Hopkins Johns to attributed cancer about email hoax a There’s around. It’s a mix of ideas from science and alternative medicine. Overall, it’s mostly sensible advice. For example, it says not to eat meat/ animal products, and to eat lots of vegetables. Don’t eat things with and chemotherapy radiation says that also It sugar or aspartame. added evine’s suggested Levine’s tears. She was really sweet. She my eyes filled with it back. Also perhaps recording myself, then playing womb meditation, for the dying. Kubler-Ross about the stages of grief books by Elisabeth I felt very calm after the acupuncture. about a world that doesn’t include Perhaps I do have some imagination about chemotherapy. I’ve done it me. There is no point in worrying do it again, to take a gentler path, twice. I very deeply do not want to but that decision is for later. the hard how and help, receiving and help giving about talked we and latter is sometimes, and how being self-sufficient … leaves something dying, what it might be like to die in major out of experience. And about this flat that I’ve lived in for 19 years. way, or indeed how that might what it’s like to be cared for in that that I needed, much help, happen. I haven’t needed, or acknowledged 5 and 10 years old. I’ve never possibly since I was somewhere between My cough seems to be getting even stayed overnight in a hospital. to never cough when I was lying more frequent. For example, I used reasons for this but at this point down. Now I do. There could be other at least part of it. Though I’m still I’m going to assume that cancer is am tired, every day. Some time in getting some amount of exercise, I I time, of period a over sick very get will I future, near relatively the knew? die. Who helpless at some point, and I will quite will perhaps be cataclysm word cataclysm apart has got to become OK too. The habitual. Falling springs to mind. April 4: 24 hours later April 4: is there Sometimes death cancer patient. to be a model I don’t have like a kitten purring on my lap, and it is fine. Atother times, it’s very life my of go let have I same. the stays nothing is, it way the That’s sad. momen- again; then just a have picked it up Many times I many times. down are running streams and away, be taken will it tary thought that my face. Being fine can be being fine, or it can be fine am I a fence,shift. paradigm a need I though, orSeriously mask! fencing a Or a mask. deep feeling that Or not that, as much as the rather perhaps too often. I want to be not going to ask that anymore. No one knows. Even Dr M says cancer is is says cancer Dr M Even No one knows. that anymore. to ask not going for everyone. coaster, a roller I seem seem I (bargaining, depression, depression, (bargaining,

Questions and Answers about Death and But the detailed ‘science-based’ debunking of it is also not completely also not completely is debunking of it ‘science-based’ the detailed But expe- my with fits system immune the about says rebuttal the What mostly have and myself to house the had I’ve days few last The book, short a Found to have skipped three out of five stages of grief of stages five of out three skipped have to by Elisabeth Kubler-Ross, in Noe Valley yesterday. It’s inter- Dying by Elisabeth Kubler-Ross, in Noe caregivers. on focused all almost it’s unfortunately but esting, scars and damages healthy tissues and organs. Some of it is obviously is obviously it of Some organs. and tissues healthy damages and scars killer body’s the “allows meat eating not how like science, on based not very would be that all it took, (If that’s cells”. the cancer to destroy cells cool.) It says my experience. accurately describe anyway does not factual, or damage, permanent cause not do radiation and chemotherapy that though in my feet, (nerve damage just a lie! The neuropathy which is gave me Radiation chemotherapy endures. caused by it is not painful) the main reason Don’t get me wrong, radiation is arthritis in my hips. the effects are now, but still, it is false to say that I am alive right temporary. immune the and cancer on focus to seem types medicine Alt. rience. don’t x-ray my system is fab and as long as you system. My immune are healthy. be healthy as a horse, if indeed horses lungs, I appear to you if that thinking is not, or ‘scientific’ view, of point any of danger The or aggressive cure you, whether it be juice fasting do one thing, it will I’d meld I had longer to live and more motivation, chemotherapy. If from the point be the correct parts of both articles, what I consider to successfully fairly who cancer, stage advanced with someone of view of medicine. relies on both conventional and complementary I had a long wander around the stayed in bed, although yesterday on solitary retreat today, but don’t neighborhood. I was planning to go it is the gumption – a word I’m sure really have the energy, or perhaps many terribly the transport and up gather to – before used never I’ve may I hours. three for drive and gas, get me, with bring to need I things still go. But not now. for the dying. I mostly stick to acceptance, anger, denial, acceptance) for the dying. I mostly stick to acceptance, with occasional bouts of denial.

204 Crap, I’ve got cancer 205 Officially dying Vanishing Lung Syndrome Vanishing Lung by Miroslav Holub fights for breath. Once in a while somebody in everyone’s way. He stops, getting around, muttering The crowd flows crowds, about the flow of for breath. but he just fights be growing Inside there may a sea monster within a sea monster, a black, talking bird, a raven Nevermore that can’t find a bust of Athena to perch on and so just grows development, like a bullous emphysema with cyst fibrous masses and lung hypertension. Inside there may be growing a huge muteness of fairy tales, everything, the wood-block baby that gobbles up father, mother, flock of sheep, dead-end road among fields, screeching wagon and horse, you, I’ve eaten them all and now I’ll eat while scintigraphy shows a disappearance of perfusion, and angiography shows remnants of arterial branches without the capillary phase. Inside there may be growing an abandoned room, bare walls, pale squares where pictures hung, a disconnected phone, feathers settling on the floor the encyclopaedists have moved out and Dostoevsky never found the place, lost in the landscape where only surgeons write poems. April 6: 6: April rela- Her Someone gave me an air purifier which has been blowing dust all My fears or reluctance about chemotherapy are many. One has been been are many. One has about chemotherapy or reluctance fears My things I’m doing are probably While it’s also true that the other I talked to Jules yesterday about chemotherapy. She pointed out out She pointed about chemotherapy. to Jules yesterday I talked over my room for the last few days. So I need a new filter for that, but the amazing thing is that Shantinayaka gave me just a regular dust mask, you know, for construction workers or whatever. I wore it the whole time I was in the clutches of vacuuming madness. Along with my Laney College goggles of yesteryear, it helped a great deal with the April 10: More from the dusty frontlines Hridayashri found the HEPA filter in the vacuum apart a bit to clear it cleaned and put back in. Then I took the vacuum cleaner, I which the layer of dust I created by vacu- out, and tried to rid my bedroom of uming the super dusty ‘picture rail’ (I think it’s called) yesterday. The HEPA filter is tiny. Does it really do anything? that it will decrease my life quality, possibly permanently (for example, (for example, my life quality, possibly permanently that it will decrease my life. And Dr gets worse), and do nothing to prolong if the neuropathy work, would what idea no had she that times many said has herself M didn’t want to do it. Ending up in and that she would understand if I by chemotherapy. I’m very aware the cliche cancer bed, dying, wrecked interventions that don’t help, these days of various kinds of medical too, of it, suffering. Part cause life, that of quality consider do not that super injecting periodically about think I when get I feeling the just is toxic chemicals directly into my bloodstream. seems the only hope for actu- slowing the rate of growth, chemotherapy my life. I remember what Dr ally shrinking the nodules and prolonging of treatment A told me, that the disease was at a stage where any kind Perhaps I will agree to do it for would need to include chemotherapy. M about choosing the drug that three months. Perhaps I will ask Dr First let’s see what the PET has the lowest instance of neuropathy. was no clear data as to whether scan this week shows. She said there that is now know I thing only The results. better gives earlier it starting tank. I want to start before I need an oxygen tive who lived for 30 years with an 18 month prognosis was on and and on was prognosis month 18 an with years 30 for lived who tive or stabi- of remission time, with periods the whole off chemotherapy relative or others. I did not know this, about her lization. Somehow He had also in New Orleans in the voodoo museum? What about the guy I chemotherapy? done he Had tumor. brain a with years so or 30 lived tell to not doctors advises Kubler-Ross Elisabeth BTW not. assumed it, think of are expected to live. Come to they long how patients their They gave volunteered life expectancy numbers. my doctors have never only when pressed (by me). them reluctantly and April 8: Thoughts on chemotherapy Thoughts 8: April into me sent nodules lung new of news recent the that say to safe It’s different very is which dying, of theme the on tailspin a of something death. theme of apparently easier-to-take from the odds the overcoming about stories’ ‘miracle the of most, not if some, that chemotherapy. done had who people about were cancer with

206 Crap, I’ve got cancer 207 Officially dying

for over a a over for Robin left me some lentil-potato-kale soup yesterday. Yay! Lately, I I Yay! Lately, soup yesterday. me some lentil-potato-kale Robin left Misha was wonderful this morning. She put a lot of needles in Misha was wonderful this morning. She put a lot of needles in usually am I since but metastases, more were there suspected I As in anti-smoking campaigns, a federal effort should be launched effort should be launched As in anti-smoking campaigns, a federal Traditionally, glucose and fructose have been considered as inter- Traditionally, glucose and fructose have been given to sugars other than changeable … and little attention has increased dramatically in recent glucose. However, fructose intake has and fructose uses distinct trans- decades and cellular uptake of glucose cells can readily metabolize porters … these findings show that cancer have major significance for fructose to increase proliferation. They fructose consumption. cancer patients, given dietary refined April 11: Sugar two hours. It was E talk at the library for almost Jules and I saw Dr me up beforehand been improved if he had called great. (Would have sugar used to his slides!) He talked about how to help him simplify of sugar we did eat 20 times the amount be special! Now Americans nature that are there are no sweet foods in 100 years ago. (Factoid: sugar added little very eating been have I Because poisonous.) effort), seeing him in the beginning this took some year now (especially and sugar about asked I talk, E’s Dr at Q&A During affirmation. an was study, which I looked up; it says: tumor growth. He mentioned a UCL coughing. I coughed maybe once or twice total, less than I have coughed coughed I have than less total, twice or once maybe coughed I coughing. of best part the isn’t breath your own breathing Though time. in some should I that suggested have friends Some it. to used get you but that, which dust-defying tasks, do these (ideally) other people ask (or pay) there is with the mask, using a mask. But when I am not makes sense alive, these days is staying it. If my main job for me not to do no reason for it. and I have the energy me do that, this is helping to amazingly unmotivated things, and motivated to do certain am very balance got cooking or food shopping. Also my PayPal do others, such as is very handy. later someone gave me $250 which to ‘0’ and a few days my upper chest, front and back. My lungs opened up, and I stopped my upper chest, front and back. My lungs opened up, and I stopped again, coughing I’m out walk I as soon as But great. so felt It coughing. though it probably won’t be back in full force until tomorrow. I slept for an hour there, and I slept when I got home. I am much more tired lately. wrong at such guesses, I placed no wagers. But I was right. As with the new mets in my lungs, the reality went beyond my imagination. April 12: OK, I’m officially dying now April 12: OK, I’m officially dying realistic. Not to be melodramatic, I think it’s to reduce refined fructose intake, the study said. BTW, table sugar is points out that the problem is not half fructose and half glucose. Dr E be to seem fructose of amounts Large sugars. all it’s fructose, with just damage, insulin resistance, fatty particularly pathogenic (causing cell about anything is toxic when highly liver, and more). He noted that just I’m getting a PET/CT scan today. concentrated and taken in large doses. Padmatara made an announcement at the retreat. I wasn’t there so at the retreat. I wasn’t there so Padmatara made an announcement in South SF, tomorrow about I hope to talk to R, the social worker of a Peaceful Death’, the In that story I read recently, ‘The Making I have a busy week with Paramananda here, Jeff coming tomorrow, Dr M called at around 4:30. We didn’t even talk about my lungs. lungs. my about talk even didn’t We 4:30. around at called M Dr did I chemotherapy. of idea the to bit a up warmed had I M Dr told I ask her: Next week I will also condition? look like for someone with my 1. What would a decline point? to gain from chemotherapy at this 2. What can I hope the phone call that I couldn’t talk about I had to tell Paramananda don’t know exactly what she said, but people were just friendly to me, me, to friendly just were people but said, she what exactly know don’t scan, which is exactly what I needed. and no one asked me about the PET by surrounded was I Really, best. the are kindness and Friendliness for that. cool and loving people. I am so grateful She told me a year or so ago that how to ask questions of my doctors. I don’t. often patients their whereas doctors from story full the gets she think it applied to my doctors, but thought I didn’t believe her, or didn’t remember it vividly now and want something stuck with me because I her advice at this juncture. participate to him wants doctor the because chemotherapy given is dad in a clinical trial, and the brother wants him to keep up spirit. It causes him a great deal of suffering, does not prolong his life, the fighting and he dies in the hospital completely wrecked and confused by drugs. of My fear of natural death pales in comparison to my fear of this kind death. On the other hand, what if chemotherapy could prolong my life for a year? It seems so unlikely. I need more info. and Paulette coming Friday. These people are among those I love the most, and yet, it feels like too much. April 14: Coming home much. My situation is much more I cried on the freeway a bit, not had I myself. to relation in is it than people other to relation in painful a Thousand (Unwanted) Divorces. the thought on retreat, Dying Is Like There is a 2 cm tumor in the left lobe of my liver, and disease in my spine, my spine, in disease and liver, my of lobe left the in tumor cm 2 a is There certain totally not – ‘spots’ also are There sacrum. the to back mid-upper to my adrenal glands. spleen and next are cancer – in my that they the one I’d like us to pick for chemo, various options available say of the are Topotecan and Avastin She said with neuropathy. least associated C at talking to Dr after anyway mind in had was what she good, which to start it would be good to do treatment, said if I am going UCSF. She week. two. I told her I’d let her know next in the next week or at Jikoji now, it and we were in the car. I’m until I was done packing is very beautiful. But trying to figure out how to they see me, after will automatically say when people, many of whom navigate among 30 terrible quite really is which you?” are how “Hi, fashion, American the say! But I’m pretty sure at our for me. (I know that it’s just what people not to.) brief check-in, I’m going to ask them

208 Crap, I’ve got cancer 209 Officially dying An Adventure by Louise Gluck 1. night as I was falling asleep It came to me one with those amorous adventures that I had finished been a slave. Finished with love? to which I had long profound To which I responded that many my heart murmured. discoveries asked at the same time, I would not be awaited us, hoping, that belief the But them. name not could I For them. name to they existed— surely this counted for something? 2. The next night brought the same thought, the nights that followed this time concerning poetry, and in were, in the same way, various other passions and sensations heart set aside forever, and each night my favorite a of deprived being child small a like future, its protested toy. way of things. But these farewells, I said, are the territory And once more I alluded to the vast And with that phrase I opening to us with each valediction. became sun, and my heart a glorious knight riding into the setting became the steed underneath me. 3. the kingdom of death, I was, you will understand, entering though why this landscape was so conventional I could not say. Here, too, the days were very long far over the sank sun very short. The were while the years mountain. The stars shone, the moon waxed and waned. Soon faces from the past appeared to me: my mother and father, my infant sister; they had not, it seemed, finished what they had to say, though now I could hear them because my heart was still. 4. the precipice At this point, I attained I saw, descend on the other side; but the trail did not, out, it continued at this altitude rather, having flattened see, though gradually as far as the eye could supported it completely dissolved the mountain that – riding steadily through the air so that I found myself were cheering me on, All around, the dead them obliterated the joy of finding to them – by the task of responding 5. As we had all been flesh together, now we were mist. shadows, As we had been before objects with chemicals. evaporated form, like without we were substance now Neigh, neigh, said my heart, know. or perhaps nay, nay – it was hard to 6. bed, the morning sun Here the vision ended. I was in my contentedly rising, the feather comforter body. mounded in white drifts over my lower You had been with me – there was a dent in the second pillowcase. We had escaped from death – or was this the view from the precipice?

210 Crap, I’ve got cancer 211 Officially dying were all normal except it contains hemoglobin. An An hemoglobin. contains it except normal all were urinalysis Paramananda, Padmatara, Julie and I talked to Dr M today. It was Dr M today. It was I talked to Paramananda, Padmatara, Julie and would refer me to hospice. Even If I decided not to do treatment, she In more recent news, peeing has been painful for the last several for the last several has been painful recent news, peeing In more at tomorrow M Dr meeting are I and Padmatara Paramananda, more cancer. a new self image that includes a lot Just to say: I have ‘letting go’. And the reason In Buddhism we talk very freely about a good conversation. It made me feel positively cheerful. I told her about positively cheerful. I told her about a good conversation. It made me feel ‘get it’. She said she didn’t know my fear of chemo. She seemed to totally my point of view is. if I could fully appreciate how unusual though things seem to be spreading all over the place, the primary around revolve probably will decline my and lungs my still is concern them. There are so many ways things could unfold you can’t really know all the scenarios. Bone pain can be dealt with in various ways including radiation. It’s funny thinking about the psychology of it all. For me, the disas- seem mets other the all anymore, important that aren’t lungs ‘still moment, the at are, lungs the view, of point medical a From trous. the main issue’. April 17: Feeling betterish did, or should have done, your I feel sorry for all you Americans who it doesn’t matter! taxes on April 15! I didn’t do mine and April 16: Inside my thorax my Inside 16: April was which report, scan in the PET/CT words lot of the up a I looked a than other was, thorax a what sure even wasn’t I mistake. a probably Seuss character. possible Dr because center (mostly again, at the health hours today, days. Spent bottles I drank two large pee even though ages to have to it took me results The Tong. with lunch and test, urine exam, an for water), of the of yesterday about talked I and R what you with share could I wish I 1:30. for doctors to talk to need or cancer have you if useful be might it – checked also I and Jeff much. too is there but – reasons intense other Mill Valley. a beautiful “green cemetery” in out Fernwood cemetery, now either! Can’t go into that for time the that feel I anymore. eat I what about bothered so not I’m is important!) It passed. (However, what YOU eat being careful has normal life, but for me. In a way no different from is an intense time changes seem to be all about life heightened somehow, and my mood In the past I have sometimes and death and my views about them. as a walking reminder of death. seen myself, in groups anyway, people I know personally, there is Paramananda pointed out that to the goes beyond the abstraction. Truly, a depth and a tenderness there that the tenderness is incredible. physical our of aspect every that is goal, a as it have to or go, let to and even our body, is borrowed. experience in this world, what we own including one, loved a of go letting Yet this. know we level some On just it’s maybe Or difficult. tremendously is oneself, is person the when thinking about it that’s hard. internet search shows an association with cancer in the kidneys. Alas. an association with cancer in the internet search shows Bevacizumab (Avastin) (Avastin) Bevacizumab Yesterday was “Dutch Day”. Viradhamma and I had a great time at at time great a had I and Viradhamma Day”. “Dutch was Yesterday So So the drugs on the table, at first, were the chemotherapy drug, longer once told me that people tend to live R the social worker not important), about food last time (that it’s To clarify what I wrote I wonder if once I get ill, I could maybe sublet a ground floor studio the De Young with the Vermeer and the Rembrandts, then later Tong the De Young with the Vermeer and the Rembrandts, then later Tong - and I went to see the primatologist Frans de Waal, who studies compas - sion and other moral behaviors (reconciliation, fairness, empathy, coop footage. Elephants had great and he eration) in primates. He was funny, doing puzzles that can only be solved cooperatively. A capuchin monkey gets monkey another that time same the at slice cucumber a gets (who a grape) throwing the slice back and banging his fist on the ground.A had gastrointestinal complications, fistulas, perforations, etc. Four of within one year. I must ask Dr M these patients died of the perforations what her experience with this is. April 19: Chemo lite? I had in mind wasn’t exactly Misha let me know that the treatment apparently, can have very “Chemo Lite” as I had supposed. Avastin, it’s (ideally) Because it. taking stop serious consequences even after you it messes with your blood. Looking stopping the blood supply to tumors, much of them I can’t understand. at the studies is frustrating because on patients cancer ovarian 11 all says study One Topotecan, and the targeted drug, Avastin. The Avastin is pretty is pretty Avastin The drug, Avastin. the targeted and Topotecan, chemotherapy of a variety with be combined and can straightforward every go to my health plan mean I’d have to Topotecan would drugs. The would fall and all my hair every three weeks, days in a row day for five to lose I’d be sad came up and I mentioned when the hair loss out. But drug to one of the other we could switch new ‘do’, she said my curly loss, and doesn’t cause hair It (jem-SITE-a-been). options, Gemcitabine said She weeks. three of out two for week a once only administered it’s before had I what than tolerated well more much be to tend drugs these six weeks (last that we’d do a scan of some kind after (CarboTaxol), and it all seems very said after two or three months). So time we talked, she won’t it probably like it seems so bad, and If it’s not doable to me now. a few more months of life. be, it could buy me and I probably will, I won’t be in If I do the chemo, they’re in hospice. isn’t in line getting scans and stuff, which still be hospice, because I’d will happen. I principles. Once I stop, that is what with the hospice things. one of these days and chat about need to call the hospice food thing, although I seem to I’m not completely ditching the healthy eat to want still I healthy!) that isn’t (which lately home at eating not be want to balance a bit more eating food that makes me feel good, I just few a had I eat. to me’ for ‘good is what with eating like feel I what I really enjoyed. Haven’t done glasses of red wine the other day which that in probably a year. apartment This nearby? or Francisco, San of part leafier a in apartment but else, somewhere be to like would I that think I plus, steps, 31 has close by. I hope that can be worked out …

212 Crap, I’ve got cancer 213 Officially dying for calling her. It was nice to talk to to talk to nice was It her. calling for times few a Brilliant meditation practice day with Paramananda yesterday. If yesterday. If practice day with Paramananda Brilliant meditation In the to me that my body is self-destructing. Anyway, it occurred probably is people other for which yesterday, me called mom My “The sounds of an MRI” would be an interesting post. Suffice it to It’s funny how used to it I am now, people doing things to my body, I notice magazine articles often begin with sentences like, “Sam I’m in much less pain after taking antibiotics for the bladder infec- for the bladder taking antibiotics less pain after I’m in much I choose the right cocktail of lying down, sitting in a chair, and sitting sitting and chair, a in sitting down, lying of cocktail right the choose I floor, the on sitting comfortable super be occasionally can I floor, the on bones pelvic my and sore is sacrum My pain. some is there when even are not happy. would convey the mission, and old Mission Impossibles, a tape recorder start getting all smokey. It’s like then announce its self-destruction and took around 50 years. What that with my body, except the self destruct was my mission? me around once a year, which has not that unusual. But my mom calls Apparently Kathy told her to! bummed me out a bit over the last while. me thanked she Then machine a of a laundry room, the sounds combination of say that it’s a a BA-BA-BA-BA-BA-BA t-t-t-t-t-t gun, and a buzzer. At the end it was and response. It was interesting BA-BA-BA-BA-BA-BA t-t-t-t-t-t in call though a soft one). to listen to (with my head in a vice, shooting me up with “contrast”, asking me about allergies, wheeling me into tubes, prodding private or public parts. As I have said before, kept I relaxing. quite be can scanned being while tubes in still keeping thinking today: How the hell is this thing looking in my brain? Smith was struggling with stage 3 prostate cancer … “ This is a case by cancer, is cured of one person if But interesting. and may be study April 21: “This message will self-destruct in five seconds.” will self-destruct “This message April 21: some with place quiet a to moving about lot a quite thinking been I’ve bigger factor now be expensive. But actually the trees around. It would that’s place a in be to like I’d place. a find to take would it work the all is in terms of my far away, but it might be too late quieter but not too for it. energy level to look people in her family are long-lived her. She said more than once how There wasn’t much I could say and that she’s going to live a long time. was, I said that my body is full of to that. When she asked me how I that. I said it was awful to tell her, cancer. She said it was awful to hear It kinda helped me realize how she then she moved on to another topic. Her 80th birthday is next can’t deal with the reality of my situation. to see her, probably for the last month. I’m going to try to get down intense that’s going to be. time. I can’t imagine how weird and three year old chimp looking thoughtfully through glass at a three year year three at a glass through thoughtfully looking chimp old year three actually). portraits Rembrandt of the me of reminded (kind old human between relationship the of all things, about, info had amazing He also It was cool. empathy in general. yawning and sympathetic tests did saying that the from Dr M today an email though tion. I got Who knows! infection. that I have a bladder not indicate

Fuck You Cancer, Rick Fields God is extra I is extra Extra is extra Funny how in the light of death everything shines! Ensure for food Morphine for pain Marinol for appetite Kytril for nausea Advil for sleep Sit on the toilet Shit and vomit at once O This is ridiculous And still I’ll sing my song. from I know this is a lot of random points, but I just want to say that I do do I that say to want just I but points, random of lot a is this know I April 22: Extra, by Rick Fields April 22: Extra, familiar with the not ‘get’ this poem unless you are Note that you may Suzuki. writing of Shunryu Also like these lines: April 23: Brain mets for anyone else. These kinds of of kinds These else. anyone for anything mean doesn’t really this itself things fill people with hope.A revolutionary new treatment was tried many times, have said As I cancer-free! she is and now Johnson on Jane experimental the how you tell to people dead the for difficult terribly it’s try to any articles that And I haven’t seen worked for them. treatment I guess. would be too depressing point of view. It show their felt very Tonight my chest little ones. symptoms, perhaps have cancer no like there is weird. It feels weaker, and my voice seemed congested for the last several days. I have My sacrum aches space in my chest. Finally bought I did when I was on chemo before. less energy even than at cough don’t (almost) I them. of use make will I today. masks face don’t symptoms infection bladder my Hoping on. one have when I all about Avastin and to Dr M and said I have concerns come back. I wrote Paulette and personal experience with it. My sister asked her about her by Julie’s pool. still here. We had a nice time today Paramananda are

214 Crap, I’ve got cancer 215 Officially dying

A friend told me that I seem more grounded since I was diagnosed, grounded since I was diagnosed, A friend told me that I seem more away the bladder pain (similar Drinking lots of corn silk tea to keep got my car detailed so now it’s Just took Paulette to the airport. She lectures entitled “The Secret Just got to the section in the wonderful I was going to write about how cool it was talking to the social worker worker social the to talking it was cool how about to write going I was radia- getting chemo, the about me to up everything left she Though it now. The big of the report but I can’t quite face She sent me a copy this really be changes things. You think, Can In a way, this news April 25: One thing, another, or both Waking up at 5 this morning I thought of Roseanne Roseannadanna ain’t it “If say, would She shows. Live Night Saturday old the from one thing, it’s another.” Too true. Lately, seems like it’s both things. Probably was both at some point for the comedienne, too, who died of ovarian cancer. which is probably true. I feel for people who are dying who can’t face can’t face who are dying who people is probably true. I feel for which it. They are missing a lot. their own death, even to talk about effect to D-Mannose.) And taking citrus flavenoids. Both suggested by some yoga poses yesterday. I think Misha. Prasadacitta helped me with my lungs feel, it’s hard to say, I need to do them every day, or else extent that it changes my voice smaller I guess, less spacious, to the slightly, a bit higher, shallower. a cough-free-zone. it yet but it’s about war metaphors Life of Words”. I haven’t listened to used in reference to disease. April 24: Great Scott! I looked at the MRI report, and decided not to post it. Suffice it to say, appointment with the radiation the stuff in my brain is not minor. The oncologist is Monday afternoon. yesterday, and some details about the areas she helped me with, which with, which helped me she the areas about some details and yesterday, other and For that lifted. had been a burden me, like huge for were Which happy. profoundly feeling morning this bed of out got I reasons, this at Rainbow Grocery Po and I were thing, because when is a good metas- MRI showed brain told me that the Dr M called and afternoon, tases (several). her I’d do I told a strong recommendation. brain came with tion in my strange, very always is which yet, as symptoms no have I course, Of it. want me to She said she didn’t the alternative. about think until you main things kinds of symptoms. Nor do I. Three start developing those Damn, I’m only as she was telling me, I thought, to look out for, and has come to pass: remember two of them. And so it going to be able to that the third balance … Paulette and I conjectured headache, losing memory loss! one was probably lose my groovy my point of view is that I will in fact bummer news from choice. I don’t feel that there’s a real hair with the radiation. way, my overall situation is happening? Really? To me? But in another riddled with bits of cancer, and the largely the same: body astonishingly biggest bits are still in the lungs. The space in the middle [between double rainbows] is called rainbows] is called The space in the middle [between double by that when I first discov- ‘Alexander’s dark band’. I was very struck that I am in Alexander’s ered it years ago, and have felt so often which is darker than all the dark band – the space between rainbows probably been feeling a bit surrounding sky. Thought then that you’ve about the cancer in the brain. dark-bandish lately, especially hearing in that dark band that there It’s very hard to remember when you’re photo is to remind you that are rainbows all round you. So the last there are rainbows. Big glorious glowing rainbows. I was telling Julie the other day that sometimes I feel as if I have the other day that sometimes I feel I was telling Julie from a friend in London: This morning, this came in an email Did I mention that when I talked to Dr M she was emphatic about about emphatic was she Dr M to I talked when that I mention Did April 28: Minor updates Friends have found some great sublet options. One hold-up is I don’t know if I will need to be relatively close to South San Francisco where hope I many days? how for ... possibly daily happen, radiation will the to know much more tomorrow. Feeling more congestion in my lungs. There is stuff I can do about it, but not motivated the last few days. some kind of contract or agreement with people that I am going to be to going I am people that agreement with or contract of kind some with you on this or that retreat in around at some later date. I will work be there to help you with something, two years, or in several years I will say what even I couldn’t little things. a hundred ... do some project or they are until I’m I was with the person and I am reminded of what all these I feel that I am bailing out on Then planning on being there for. bad, even I feel and nowhere, of out coming suddenly RSVPs assumed do about it. Not that hardly any though there’s not a damn thing I can a bit sad today and that is probably I’m feeling is even conscious. of this foggy on and not leafy somewhere sublet get a to I’d like here. out coming I’m going to be able to manage to but not sure a month, for the peninsula it seems that it is too late. look for and/or find one. Sometimes April 27: A kind of goodbye April 27: A kind the evening to the airport yesterday, after spending Took Paramananda about death Moon Bay and Pescadero. We talked and half a day at Half easy kind of being not a lot. It was mostly just the some, my death, but sweet- and the subtle friend, close a happens with conversation that and time. knowing that it is probably the last ness and sorrow of me picking up a prescription for steroids (dexamethazone) that day? She She that day? (dexamethazone) steroids for a prescription up me picking That wasn’t Wait. player! baseball a professional become me to wanted swelling, associated with brain mets being something about it. It was radia- hrs before getting be taking them 48 that I’d need to and also you give they because happy kinda was I and them, taking I’m So tion. isn’t as just that relaxing you’re still tired, much of the time energy, but is good. though so that getting more exercise I will probably be relaxing. calendar) because of losing documented (but did not have Remembered on Sunday! a talk at the Gay Buddhist Fellowship that I am giving something! of a big deal. I will come up with Which feels like kind

216 Crap, I’ve got cancer 217 Officially dying Dr O asked me to do all sorts of things to test balance, etc., and I to test balance, etc., and I Dr O asked me to do all sorts of things Memantine for six months He asked if I want to try a drug called I went over to Oakland today and got a shamanic healing from Alan. If you are reading this, I love you. If you are reading If you ever get a chance to give a talk at the Gay Buddhist Fellowship, Fellowship, Buddhist Gay the at a talk give to chance a get ever you If passed it all with flying colors: no symptoms of brain mets whatsoever, MRI. And yet I am taking steroids and no swelling showing up on the like a vise grip, and that’s with (reduces swelling) that knot up my chest a After days. few last the for to supposed I’m what of half taking only swelling, I can stop taking them. I week of radiation, if there is still no Primarily skin side-effects. possible detail on the won’t go into too much – mostly pattern” – awesome irritation, hair loss (in a “reverse Mohawk some loss of cognitive function. after the radiation is finished), and ten days!) It’s a drug developed (remember the radiation is only for radiation. whole-brain from decline cognitive reduces that dementia for expects that I might actually live He suggested it for me because he function. cognitive reduced have I whether matter to it for enough long this. I suppose that I still seem We were all a bit surprised to hear to think this means something! In very much alive, and doctors seem it – it handle couldn’t to the drug give tried to patient he one case any about my lungs going wrong made her dizzy. I told him I was worried start conceivably could I said He stuff. brain the on working we’re while chemo a week after radiation is over. Kind of wonder if I’m going to have the stamina for that, but maybe that will depend on how my lungs feel. It involved a lot of sound, and it was really wonderful. It brought me back to my heart, which is easy to separate from now that it feels so - amazingly tense. It brought me back from the realm of the purely prac love. and tenderness relaxation, deep of feeling a to anatomical and tical April 30: Anatomy and non-anatomy April 30: Anatomy that there are than three brain mets, the risk When there are more why they are to detect is very, very high. That’s other mets too small tiny, are which of some 15, about have (I thing. whole the zap to going – is lower, and The dosage – or is it voltage? and one is 3cm wide.) of weeks five the than problematic less be could it like sounds it overall pelvic radiation I had before. April 29: Brief April 29: tomorrow Will write more am bushwhacked. day today, and I Super long radiation with Dr O, the is that we met the short version but for now, exactly isn’t which – radiation” brain “entire getting be will I oncologist. to parts that are important it misses the radiation because entire brain actually It’s weekdays. ten next the for Wednesday this starting – miss with this shit all you talk to the doctors who deal much less scary once and room this of out moving about again Thinking normal. it’s like day, I thought, almost I’m realizing is a bigger deal than this building, which a small death in itself. do it. Such lovely men! men! Such lovely do it. Hibernation 29 October 2010 I wake up in Blackness. I have fallen out with the world. My body swaddled In caves. Yet the pace Does not slacken. Yet I’m starting to freeze. Light shocks My face, Heats the liquid Of my eyes, All this is overdone, Overwrought. Full of moves. All I need is A source of water, High-roofed caverns, Light reflected off Marigolds. No reaching. No digging. No linking. No rumbling machines. There is no need. It’s all here.

218 Crap, I’ve got cancer May 2013 On being seen as “dead soon” May 8: One of the technicians took a photo for me today, Day 7/10. This is what it looks like, which comes as a surprise to me, too, since I can’t see anything from inside that net. 221 On being seen as “dead soon” against potential brain swelling. Dr O just called and and called just O Dr swelling. brain potential against Besides whatever is caused by the brain zapping, the chemicals are Besides whatever is caused by the brain zapping, the chemicals are a on is Francisco San is. peninsula” “the what me Someone asked Upon removal of the ratcheted mask I looked like a Star Trek char- ratcheted mask I looked like a Star Upon removal of the in, two bedrooms, on the penin- I’m going to look for a house to live Ambien (zolpidem) for sleep, Memantine (namenda), an Alzheimer’s Ambien (zolpidem) for sleep, Memantine (namenda), an Alzheimer’s - drug used for retaining more brain power after radiation, and dexamet steroid a hazone, peninsula, yes? The part that’s just underneath (south) of San Francisco May 3: Yesterday, and rental criteria Dhivajri’s with people you may not Very nice time last night, dinner at food, and I surprised myself being know, but it was relaxing with great Misha’s on lying Earlier, conversation. of level some on carry to able table, I was reminded of that scene with open, it comes pouring out in slow The Shining. When the doors slide the blood-filled elevator in image, corridor. A violent wide down the a river motion, pounding out that seem to be pounding it was more about the chemicals but for me strange a such It’s mind. my impacting hugely and body my through begin to describe it. It does involve experience of myself, I can hardly a and energy, optimistic somewhat possibly and manic of Lots energy. kind of bodily confusion. haven’t gotten a headache or anything after this weekend, I can if I said stop taking the steroids on Monday. (Tapering down until then.) acter; felt a bit like one, too. Then multiple snafus trying to get prescrip- one, too. Then multiple snafus trying acter; felt a bit like bust. a was which there, down pharmacy “convenient” the at filled tions term from World War II? It meant Did you know that snafu is a military “Situation Normal – All Fucked Up.” until after this weekend. The sula, but can’t really look at anything probably get something twice East Bay is a lot cheaper and I could Marin seems good for what I’m as big, but right now it feels far away. and no train. Need to see what’s looking for, too, but even further away, we seem to have a mental barrier available. Here on our little peninsula to crossing bridges, or some of us do. May 1: Radiation was weird May 1: Radiation doing started people nice and 4-8am, sleeping after there in Stumbled I could feel the most of which I couldn’t see, but things to my head, noises, whirring table, and machines making a ratcheting down onto when I am essen- posing cheerful questions to me around, and people it seems, ‘til after is not much effect or side effect, tially gagged. There it’s over. Parts of it are like the Russian steppe with strip malls, malls, strip with steppe Russian the like are it of Parts It is unclear whether or not my scalp will actually end up being will actually end up being It is unclear whether or not my scalp The there. way half so Karunadevi, with radiation of five day thru Got a single can of tomato soup Grocery there wasn’t At Rainbow I asked the other day to become what is called an “anagarika” (anna- I did get a headache yesterday and still had it today, which is disap- yesterday and still had it today, I did get a headache But 3mg of dexamethazone later I feel fine. I’m sitting out on the Friday. Lying on the way here Springs on Hot Stopped at Harbin burned. My guess is that it will. I just have to decide between a burned burned a between decide to have just I will. it that is guess My burned. cutting it, which would help with head, weird waxy hair, or prematurely more bald patches later. Tonight the burn cream but potentially show I think will mean a lot less ending which Hridayashri put it on my head up in my hair ... I mentioned this to the techni- mask seems to be getting tighter. When making my face puffy. cians, they said it’s probably the dexamethasone without added sugar. It’s not that I am not eating sugar. I’ve gotten more lax with that – it just bugs me now, unless I’m eating a piece of cake. Looking up Campbell’s tomato soup I see that one can contains the same amount of sugar as a Snicker’s bar. GAR-ika) in our Order, which means taking an extra precept. Literally it means “one without a home”. It pretty much means adopting a more monastic or simpler type lifestyle, or in my case making formal what May 6: Waxy and puffy over all cream burn herbal preemptive her put I Misha’s advice, Taking out. come not did it morning; this times five hair my washed I head. my leaves an orange stain. Ah, and a Looks like it’s full of “product” and brief look at ingredients reveals: beeswax. is called “the [rest of the] peninsula,” the pink part on the map. The The map. the on part pink the peninsula,” the] of [rest “the called is there. is airport May 5: Quiet here. up wonderful is It Hridayashri. with County Lake in up I’m overcast. much cooler and sunny, today is was very hot and Yesterday cries tonal the to listened and bog the to down walked we morning This of redwing blackbirds. not sure, I’ve had is just how headaches are, I’m pointing. Maybe this It’s that my head that there is an ache in my head. very few. It’s not just ordinary things and it doesn’t want to do anything; feels sore and tired by my body. it’s somehow barely being held up seem a strain. And few a quiet, very is It trees. oak and cedar pine, by surrounded deck, dogs barking in the distance. A crow flies by loudly it seems, the beat of the wings. and I hear, can rather sides of my both touching I started a little cove, in down on a bench there is very good for me. I need to come head, and I burst into tears. Which as a maze of unpredictable symp- back to my body again and again, not friend. hurt as a as it feels, but as it is, and pains, toms and speculations parts are rather urban, parts quite rural and hilly, like where we go go where we like and hilly, quite rural parts urban, are rather parts and different topographies it. Very Belts of fog criss-cross on retreat. on the peninsula. climates

222 Crap, I’ve got cancer 223 On being seen as “dead soon” I I My hair looks really awful, like it’s dripping wet, but I’ve been dripping wet, but I’ve been My hair looks really awful, like it’s Today we did talk to Dr O, who is a lovely sweet man. Might be the lovely sweet man. Might be the Today we did talk to Dr O, who is a Funny how in the light of death everything shines! What with my radiation and acupuncture schedule, getting out to out to schedule, getting acupuncture my radiation and What with incredibly blessed. Overall, today, felt enjoying friends putting the burn cream on my scalp in the evening. the in scalp my on cream burn the putting friends enjoying May 9: Fatigue (steroid to counter brain I said that I’m taking 3mg of dexamethasone Make that 6. I am math chal- swelling headache caused by radiation). medicine bottles. Anyway, I had a lenged when it comes to reading yesterday and no headache this wonderful reiki session with Tania feel more like myself again. Misha morning so only took 1mg, and I It pushes me out of my body. mentioned today that dex. is very strong. last time I see him. Hope so! Or there could be some ‘gamma knife’ (very could be some ‘gamma knife’ (very last time I see him. Hope so! Or there my future, to my lungs or brain or focused high intensity) radiation in somewhere else ... May 11: She’s not there [again from Rick Fields] May 8: What it is, or looks like May 8: What it is, is Day 7/10. This took a photo for me today, of the technicians One to me, too, since I can’t see comes as a surprise which what it looks like, they line up the that net. After they bolt me in, anything from inside how they get my the bits of tape on the mask. That’s laser crossbeam to leave the room same position each time. Then they skull in exactly the a minute, for that side of my head on buzzes machine and the arm of the the same. Today over to the left side and does then whirs they ‘took some a few took it so I think, setup the confirming means, that whatever film’, usually takes about three minutes. minutes longer, but the whole deal it will keep my hair from falling hope, but am trying not to expect, that up out, or help less of it to fall out. Fatigue currently crashing its way to the symptom front lines ... I am already doing. Another way of putting it would be to say making making say to be would it of putting way Another doing. already I am all in contentment and simplicity to stillness, commitment a formal are various There a work-in-progress!) know, as life. (You of one’s areas there that including country, this in ceremony the doing to obstacles have to (It doesn’t in North America. in our tradition are no anagarikas and if it to me, sense makes what that’s anagarika, but an be done by I don’t mind.) doesn’t happen brief A mind. my on still it’s though challenging, is live to places at look are around in the city reveals that one-bedrooms sweep of Craig’s list to be further afield. $2,500. Going to have Dhammapada says: Had a great chat last night about a variety of stuff with my uncle with my uncle last night about a variety of stuff Had a great chat on death is there when how funny it’s but point, obvious an is This The There are those who do not realize that one day we all must die. one day we all must die. There are those who do not realize that quarrels. But those who do realize this settle their life is a lot of choppy water (it’s It’s essentially this: the content of I’m down at my dad’s, which used to be “dad and Chris’s” but is not not is but Chris’s” and “dad be to used which dad’s, my at down I’m anymore, and will not be again. Absence is the first noticeable thing. For many gone wrong. has somehow dad’s hair My dog is manic. The - every of care took and us, of any than energetic more was Chris years, her in the I’m speaking of and intelligence. a quiet kindness thing with and her not here, is so suddenly, somehow, just because she past tense her by Diego San in for well-cared very being is She felt. so is absence we pick see her today once be able to We will hopefully two daughters. time. now most of the she is sleeping at LAX. Apparently up Kathy They have who drove down from San Antonio. Roger and aunt Bev how hear. That’s to glad very was which I problems, health no virtually family, I family. Of course lately, in our immediate it often is in my seem to have founded the first metaphorical leper colony in an other- ... and some others seem to be joining wise healthy clan, a lot, naturally. I sense of what’s important shifts the horizon, the felt doing of sense the in change’ ‘conscious with familiar pretty I’m guess aware (that’s bring about changes or become more certain things to things natu- practice is) and then of course essentially what Buddhist You see how in a few rally shift ... but this is ... entirely circumstantial. leaves it fissure looming the and down, shuts just life someone’s months amount of time will limp along in their world, a world that for some without them. For me it’s something about superficial discomforts, a certain automatic amplification of certain signals someone, or getting weirded out in being a little uncomfortable around in the Say, mind. some way by what they say ... even disagreement or conflict, however subtle or chronic. May 14: On being seen as “dead soon” I I seem to have a different projection for myself in terms of how long might live. Sure, I have cancer in a variety of shapes and sizes – from a few centimeters down to a few millimeters and no doubt more that’s too small to detect – in my lungs, brain, liver, spine, sacrum, and hip the day for finding the right metaphor!) and when you’re in a boat and one’s fills it deal, the is water choppy that at, look to else nothing there’s one is aware of ... the vastness experience, it is important. But when any time, one is not so distracted beneath and how anything can stop to have placed themselves into by patterns on the surface. They seem perspective. They start to feel friends and family dying off over healthy people deal with it, with their superficial, inconsequential. How do death? and life into insight there Is sadder? just they Are years? the Does it make them more loving, more appreciative, or more bitter?

224 Crap, I’ve got cancer 225 On being seen as “dead soon” with with burning

My daily experience is completely different from this, quite the oppo- this, quite the different from experience is completely My daily My forehead is bright red. Unfortunately they didn’t tell me that that me tell didn’t they Unfortunately red. bright is forehead My Half-dose of the dex. for five days. Time to start feeling crap! I have very itchy ear canals and throat, maybe from allergies or or from allergies maybe itchy ear canals and throat, very I have which I will start tapering off Today is the last day of radiation, after It’s also true that more than a year or two out, I have no future have no future more than a year or two out, I It’s also true that bones, spleen, and adrenal glands. This is what the mechanical eyes eyes the mechanical is what This glands. adrenal and spleen, bones, on on paper, It’s all television. onto the project my body see into that screens. But in side-effects. with drugs and treatment I am dealing site actually. because of it, and perhaps because or no doubt sometimes spite of that, positively am I in, myself find I conditions excellent the of was part of the deal, so I haven’t been putting the burn creme on it. was part of the deal, so I haven’t been putting the burn creme on it. (He apologized!) My inner ears itch like crazy. He looked in them, said they’re just irritated. The urinary pain from the last radiation I got. I just have to decide if it’s bad enough for is probably scarring/fibrosis me to want some intervention, or if I can live with it. May 14: Surface tension the by caused are yesterday listed I symptoms the of most out Turns I was supposed to talk to seemed to radiation. After noticing the nurse Dr O. Apologies for the pangs of I ended up seeing be leaving for lunch, ladies. with the popular O is Dr that. reading got you of some jealousy go through medical school and It is hard to understand how one could so sweet and sympathetic. have the job that he has and still be radiation, or both, a sunburned forehead, heartburn from the alz. drug drug alz. the from heartburn forehead, sunburned a both, or radiation, (could urination painful somewhat and happening), that of chance (.05% be fibrosis from previous radiation). I sleep hours less per night than even when I take Ambien, which usual, and wake up every hour or two, hair is starting to fall out. I used to think was strong. And my with the nurse afterwards and steroids and get very tired. I will meet hear her suggestions. Side effects update to do an “easy” from Orange County I wasn’t able On the plane back sudoku. It seemed really difficult. Then I started a “moderate” one and up being wrong. There could be got more numbers, but many ended but it makes me nervous. other reasons for this, like lack of sleep, thoughts of myself stored in the “largely unconscious projections about about projections in the “largely unconscious stored of myself thoughts lot more content. of my brain, which used to have a the future” section I manage side- not feel, physically, like I am dying. But for now, I do clear to me now feel sick. I know that I will. It is not effects, but do not that that will be soon. life. I think I may have another year or two in me yet, because of my of my in me yet, because year or two I may have another life. I think Dr O, or more subjectively in the words of status” “high performance I do feel sick cancer symptoms. The degree to which because I have no not disease. is due to treatment, She was a wonderful wonderful a was She ; however we we dreadful; however The roots of my hair are very sore, and hair is vacating rapidly. rapidly. vacating is hair and sore, very are hair my of roots The 15. June Day Order the for scheduled is ceremony anagarika My in itch the example, for ways, various the in today horrible less felt I hairdo necessarily operates in She also buzzed my hair. Since the It actually feels good to do something with the mess that is my skull. May 17: Flights of angels sing thee to thy rest May 17: Flights of angels sing thee been yesterday morning – I had a This morning – or it might have being semi-asleep and hearing my dream, or really it was more like I knew that Chris had passed. I sister Kathy’s voice. She asked if figured it didn’t mean anything since I would have heard about it ... Our dark joke was that she but turns out she did die this morning. did go fast, two months since the was winning the race. She certainly over. is suffering her that relieved am I diagnosis. P.S. A few people have assured me that “easy” sudokus on airlines are that “easy” sudokus on airlines are P.S. A few people have assured me hard! May 16: Side effects galore effects Side 16: May - both be can I if know don’t I that on going effects side many so have I ear canal. is the itchy Most distressing of them. about all to write ered parts there were so many too. Who knew back of my throat, Way in the At night so there’s that. My eyes don’t hurt, to get chafed? in one’s head probably time, a at so or hour an than more for sleeping not mostly am I zombie-like. Overall I feel rather the bladder issue. because of much weird, though It looks totally fricking me a Mohawk. Elaine gave saying this, but bald circles. I can’t believe I’m improved over the the hair is a big I had was better! Overall, losing the chemo hair loss is part of normal, long, for a lot of women anyway, deal. Hair, short or healthy, alive. provide a link out for a long weekend. I wish I could Parami is coming Order, but I can’t explains what this means in our to something that find anything. However, a few years ago I put together some writings Amazon on book form in it will be available well all goes if it, and about in the next few weeks. And I’m not as tired. Visited my ear canals wasn’t actually pulsating. QUORN SAUSAGES FROM WHO BROUGHT some with Dhammagita “vegetarian protein” with a lot of ENGLAND. She claimed they were look at them, surprising. other food items. Customs didn’t even head, it looks my of state the with conjunction Will I go outside like this or will I cave and wear the wig? Will I wear the wig to the lunchtime meditation class I’m teaching downtown next the veneer of healthy-hair- about not applying Tuesday? I’m thinking look over it this time, but not sure I want to deal with the reactions either. In any case, ’til the burns heal my head isn’t going to be seeing the light of day much. person. which is a very messed up, burnt, are working with what we have here, cranium. hair-growing-in-moldy-jagged-patterns-looking

226 Crap, I’ve got cancer 227 On being seen as “dead soon”

I taught a lunchtime stress reduction/ meditation class today. It went Now is the season to know that everything you do is sacred. Now is the season to know that everything Hafiz I had two bodywork sessions today: a reiki from Tania this morning morning this Tania reiki from a today: bodywork sessions I had two two poles – that “how I am” moves between I was thinking today ways by essentially being assaulted in bizarre When my body is lots of dark head stubble, an My ‘look’ now is tougher and includes heat. The burn on my fore- I noticed yesterday that my skull emits very well. It’s at a groovy shared workspace type place on 2nd street.2nd on place type workspace shared groovy a at It’s well. very Saw Misha and counted the needles in my head: 22. Got some weird weird head: 22. Got some my in Misha and counted the needles Saw I which helper), (brain prescription up pick to Tong Asked pictures. did so and left it in my mailbox ran out of over the weekend. He kindly (for silk corn some up me picking is Trish later. it retrieved I where I tea) from Rainbow. I lost what I had (twice actually) and Misha says should have it every day. And Dhammagita did some breath work with me this morning which increased my lung capacity, awesome. She also has a faint things, like a rubber baby’s head that brings me delightful but unmistakable Mohawk. May 21: Needles counted, help, class taught, and partly fine May 21: Needles counted, help, class May 20: Redaction 20: May ain’t ’Cuz it with life. burning that I am said have I never should Now the in especially Sometimes, the time. much of or not anymore, true horizontal the and slow, very it’s do I when and move, barely I morning, steroids of amount tiny the taking if wonder I joy. with me fills position possible eventually it makes what is today taking stop to supposed I’m get out of bed. for me to the in back afternoon this Dhammagita with shiat’su a and Julie’s, at and sinking back in different ways sent me relaxing city. Both of them into my body. my body. The and fully or more fully occupying one end being relaxed different the all on everything “manage” to trying about more other of side-effects (actually, symptoms pills, herbal and Medications levels. appointments, medical of), know I that symptoms no have I treatment, classes, and appointments medicine’ ‘complementary tension, bodily decisions, analyzing. ensue, the body kinds of management strategies treatment, and all feeling that means which thing, a into turn to degree some to begins Basically, more of the life force is replaced by management strategy. call it, moves to my head and with- or awareness, I’m not sure what to to a feeling that I can just be in and draws from my body. Coming back a great relief. directly experience my body is always temporary ones. The hair down unorthodox Mohawk, and tattoos, albeit tail is smaller since more hair my head that looked like something’s has fallen out. I find that normal facial expressions look harder, more factor too. angry. Maybe the red forehead is a head seems to be dimming a bit.

I did stop taking the steroids, and life is much better without them, them, without better much is life and steroids, the taking stop did I to a fund to get Parami out here Apparently many people have given Have an idea for an art project. A Wheel of Fortune with a symbol for for with a symbol A Wheel of Fortune idea for an art project. Have an chant healing monks with their super low voices Listening to Tibetan to new one level, and it is challenging responding I feel like crap on • An overbed tray table (for eating in bed.) • An overbed tray table (for eating days but that seems to have • I was craving dill pickles for two • A few cute, light hats that are not weird to wear inside. Trilby is weird to wear inside. Trilby is • A few cute, light hats that are not May 29: A homeless guy called me “sir” Maybe obvious. more rather is female being women, many for Perhaps it’s the delicate bones or facial structure. But for me it’s all about my am fairly tall, I dress. a wearing I’m not or whether earrings, hair, or when much so me annoys why it sure not I’m shoulders. with broad someone calls me “sir”! very spicy jar last night. (I ate passed. Tong brought me an excellent, four of them!) other to more similar that’s energy have me help probably they though and forehead much less burnt. people. Itchy ear canals have stopped, 1-3 hours available per day of However, so far I seem to have around today I was NOT lying down or non-lying-down-activities. For example, mental adjustment, realizing that I asleep from 5-8:30pm. It is a huge in bed. am able to do almost nothing but lie YOU THANK YOU THANK to do my anagarika ceremony. THANK YOU.

However, it is fucking crazy that I am teaching this class at this time – time this at class this teaching am I that crazy fucking is it However, or last seven in the a low point probably of it is I think now that which - is the short stupid, a little bit is, I’m Fact if not longer! months, eight like way, any in taxing as noticed have wouldn’t you Things Yes. hand. justsomething for bed the across reaching kind, any of decision a making out of reach, navigating anywhere, a flight of stairs, planning anything, hours of But after many I can do lying down. ... blogging driving, talking an hour or two. normal energy for I can have fairly lying down, and remedy. seem to do something of a rotation) each side-effect (they Or brain. with many hands. Inside of a body. Or maybe a clock it. Chants of Tibet), I’m really enjoying verses (Sacred Healing or weeks, few a for them have will I if knowing not (and limitations at wrecked not fine, is that me of part some also There’s months). many feel I aches, body my and sleepy very am I now right though Even all. to sleep. in touch with it. Time now I hat?) bucket canvas hat, (Fishing brim? short Canvas kind. one fairly neutral, would be fab. I will have two in beige. A couple more, grows back. need them for months until my hair May 22: Handy Even Dhammagita, who gener- Here’s what I wish I had RIGHT NOW! her future, in the in or now need, ever you everything has speaking ally which drops, cough good few a have did (She them! have doesn’t purse, candy.) is how I found out they’re all not like

228 Crap, I’ve got cancer 229 On being seen as “dead soon” (albeit with a very large large very a with (albeit

My experience of the Order now is largely one of love and friend- love one of Order now is largely of the experience My of death brings out love. Because in my experience the prospect delightful ten days or so with On a related note, I just spent a most Taught the second class downtown today. I enjoyed teaching the the teaching enjoyed I today. downtown class second the Taught down- I had to go then seeing Misha with the class and Yesterday Many people think of me as a dying person. This is mostly not how person. This is mostly not how Many people think of me as a dying ship. Having ended eight years of working for the Center, and, in a way way a Center, and, in for the of working ship. Having ended eight years without the distractions of the difficulties that come up working with left is this very strong sense of people and getting tasks done, all that’s arises for people, not just people of love that connection, and the feeling here, everywhere. I’m finding it amazing, had the idea in the first place. created this Order, but that he even not so much Bhante that but even that makes me realize Much of the love is tinged with sadness, I loved. be to and people, many so love to able be to is it gift a what probably I that knowing to prior this of aware not was I that confess to expres- have a terminal illness. Of course some of the usual barriers more gets said than it might have sion have been removed, too, so much be part of this Order. BC (before cancer). I feel blessed to Dhammagita. Not only was it fun but she completely barraged me with ghost hungry a like up sucked I which gifts, Dear friends, After receiving ten days of radiation to my brain (yes, it it (yes, brain my to radiation of days ten receiving After friends, Dear is very sci-fi). I’m also taking Alzheimer’s medication (in a very recent radiation.) So to reduce cognitive decline from brain study it was shown and me, saw you time last the than dumber bit a least at probably I’m day is a good time And lying in bed most of the the fatigue is intense. who have wished Shabda! Thank you to those to catch up on reading me well. class and think it’s good, but it takes an enormous amount of energy of energy amount enormous takes an but it it’s good, and think class - is ridicu an hour” “it’s only that saying realized state. I current in my one. a longer than work more is actually a shorter class lous, because teaching even more Makes me appreciate half way through! Anyway, is coming Padmatara holding the reins. with Bill, who was that class much feel me makes that so it, do can’t I if backup be will and now better. there tired really get I When difficult. extremely was which twice, town that I do feel reju- and coughing, but the good thing is is much more pain to Shabda, for a while. I took some time writing venated after sleeping, I wrote: “reporting-in” journal. Here is what our monthly Order I think of myself. It’s true that a year or two more of living is probably probably is of living more or two It’s true that a year of myself. I think the most I can expect, that recent scans of my body (plus a routine brain scan) in the last month surprised everyone by showing cancer all over the place, even though I have no cancer symptoms. In terms of my daily experience, I am focused on life. The direction that my energy takes has completely changed to sort of interacting with my body, - which is to say, mitigating the physical side effects of cancer treat all-encompassing an is It well. as effects spiritual or mental and ment, task. In general, my orientation has almost completely changed from throat). Sad to say goodbye yesterday.

into into Crap! I’ve got Cancer! Celibacy and Buddhism: Bits and Bobs on Sex and the Divine My anagarika ceremony will be on our Order day on June 15. Parami 15. Parami will be on our Order day on June My anagarika ceremony for the last year and half, so I’ve spent a lot of time writing the blog to write, As my paternal grandmother used Armfuls of love, Suvarnaprabha Working with Vidyadevi to turn my blog my turn to Vidyadevi with Working is flying out here to do the ceremony. (Fundraising for that initiated by by initiated that for (Fundraising ceremony. the do to here out flying is pushed has illness My socks!) cotton her bless York, New in Savanna focus on my body that way of life (simplicity, and a me a bit more into something that’s feels like it so not sexual) is naturally that way a in already been done in a way. to write have written into Shabda maybe twice I think. I’m going to try in more. a book. Also, I will self-publish soon, also with her help, a collection collection with her help, a soon, also I will self-publish a book. Also, on brahmacarya Bhante and other Order members) of writings (from called time ... or else be on the best seller list in no Life. I’m thinking it will it. If anyone out source of info for those looking for hopefully be a useful is much more that a second edition sometime – there there wants to do – please do. could be usefully added the future to now. I am still, at least sometimes, very much full of life, of life, full much very sometimes, at least still, am I now. to future the is in writing. than it in person more apparent will be of course which in treatments many different but after cancer-symptomless, I remain own way, the side-effects assaults in their and a half, all the last year kinds different the all side-effects the in include I up. piling be to seem is beyond in a way that mostly not visible, body has done, of aging my my 49 years.

230 Crap, I’ve got cancer 231 On being seen as “dead soon” Some people take to loving-kindness meditation like fish to water.I to him, “I’m sorry I got mad.” The guy on the other side of him says I tell him he can be kind to himself about having had that experience. Someone said he found the meditation very difficult, which I took to I remember when I started, against my will it seemed, to become “I really want to change,” an African-American guy says, another After five minutes I ring the bell and the chanting fades. We cultivate an attitude of kindness towards ourselves, and then towards all beings, meditation the Is in. back creeps nervousness The enemies. our including too long? There was some shifting around but during the last stage, in three bell the ring I down. settled everyone beings, all on focus we which last a long, long time. times … the reverberations understand these people. They look beautiful after they meditate, like they just got back from a retreat. The skinny new guy’s eyes when they open look like he is in love, sparkling. I am careful not to stare at him. The white guy next to me says, “I’m sorry I was laughing, I didn’t mean any disrespect. I’m sorry. I don’t know what was going couldn’t stop.” stop, I didn’t mean any disrespect. I on, I couldn’t kind. so looks Everyone say. all they fine,” it’s “Yeah, us. of all with fine It’s mean that he couldn’t engage with it. He said that during the difficult person stage, so many people flooded into his mind so and angry, was he thatthat angry get would he hethen it, about angry really would get changed had people with interactions his that said he class later a In on. people seen actually never had He once. only practice the done he’d after doing started had he and be, to them wanted he what of outside people as that have to suddenly — painful tremendously seemed change The that. kind of awareness, to realize how it’s been before, and to see how much painful work one has to do. acquainted with the violence of my own mind. I was on my first week- experience, whole my sessions, meditation the of one in and retreat, long my whole being and sense of myself, sort of filled up with awareness of hatred, and I saw with an indescribable immediacy what was under- neath so much of my experience. I saw how at some level I hated myself and other people. Of course I also subse- many loved were as people, excruciating, was but retreat I That now. didn’t them love love I how them quent retreats. The path to happiness can sometimes be sad. one who looked blissed out after the meditation. “Thank you for coming Freedom on the inside: teaching meditation in prison Freedom on the Publications 2006 , published by Windhorse from Challenging Times The guy with toothache says his pain’s gone. Another guy says his Everyone looks so kind. There is love in the room. I press the Transracial, button and a man looking at me on a screen in a booth headache has gone. Another guy throws his crutches across the room, – about that last thing. stands up and walks. Just kidding kind you can’t actually define. transpenal, trans-sectarian love – the presses a button. The door buzzes and we are outside again. When I get home I am so happy I can’t sleep. here, thank you,” he says. People are very beautiful: I have to stop myself myself stop to have I beautiful: very are People says. he you,” thank here, from looking at them. Some people end up getting out of jail and losing it – stalking their ex-wives, taking drugs again, both. Some of the yoga doing figure, I Yet, happens. this when upset get teachers meditation and some productive time isn’t going to be enough for some people, perhaps while But violence. and addiction of lifetime a transform to people, most we’re in the class, there is something else in this world. that seems to be rare – anywhere acceptance, something going on, about peace and

232 Crap, I’ve got cancer June 2013 What is being me?

235 What is being me?

Ideally I would be drinking more corn silk tea and putting more putting more drinking more corn silk tea and Ideally I would be on June 15. Unfortunately BTW my anagarika ceremony is 10am me out a lot while I mostly Jules came over yesterday and helped winter rain people have been so kind my eyes fill with tears Santoka June 5: Skinhead and allowed your skin to get younger when you were You know how super burnt in the sun? And a few days later, in passing your hand across it, wherever it was, flakes of dead skin would wad up. My head is like that today, many layers of skin are coming off it. I took a bath and was astonished at how much skin was left in the tub. All part of the guessed have I could ago years of couple A suppose. I process healing that I’d be writing about dead skin in the bathtub on a cancer blog? moisturizer on my leathery forehead and skull, and doing some rudi- leathery forehead and skull, and moisturizer on my day. I’m very I’m doing a bit, just not every mentary form of movement. Sometimes I only want to eat a thirsty, and I am eating very little. I when Especially watermelon!) or pizza, pickles, dill (like thing specific disgusting. get very tired, food sometimes becomes the Ten (Order) Precepts. Hm, I it’s “Order only” because of chanting night that involved some kind of just remembered I had a dream last well, might as well do it before the threesome. I remember thinking, oh ceremony! Yes, things have gotten a bit sexier as I figured they might. into sex. It’s funny how in my dreams I am really cut up watermelon for me and took laid in bed. She brought food and too big or conservative) that I had away stuff (mostly clothes that are looked up “whole brain radiation in a pile for a month or so. She also only lasts a month, which is fatigue” and reminded me that it usually two and a half weeks. great news that I forgot. It’s been about June 3: What I’ve been up to June 3: What I’ve Sherlock, a BBC watching all available episodes of Not much! Enjoyed don’t I Cumberbatch. Benedict named impossibly the starring series how doing I’m glad about. I did not anticipate feel depressed, which such take could – up standing involves that anything – things ordinary putting on my of effort. Like standing up and an enormous amount ten steps. It’s a huge mental adjustment. jeans, or say, walking June 16: June led by ceremony my anagarika I had for me, moving It was very Parami. time the whole bit worried I was a although stamina I would have the about whether for it. Photo, Dhammarati with Dr M, who who M, Dr with yesterday appointment 8am Life at this point seems to be a big chore, or more accurately an to be a big chore, or more accurately an Life at this point seems Dr M asked me if I was still interested in doing the chemotherapy I seem to be getting more tired, rather than less, which is disturbing. is disturbing. more tired, rather than less, which I seem to be getting only on my back, which means When I’m in bed, I started lying now! All right, well, that’s all I got right And occasionally coughing like crazy, tonight to the point of throwing throwing of point the to tonight crazy, like coughing occasionally And be too would probably overweight, I started out being If I hadn’t I doing. am I how asking today K Dr from message sweet a got I endless stream of chores, many of which I used to take pleasure in (or endless stream of chores, many of which I used to take pleasure in (or barely notice). that we talked about. I replied that I was still planning on it but I had also been planning on feeling a lot better than I do now. I wonder if I’m going to have to change the game plan on that. What if I don’t regain my energy? Unknown. June 12: Prosaic update an made and here Laura’s simply be cancer, or it could be said the reason for my fatigue could or dehydration, or other things a prolonged side-effect from radiation, her for a while and then did various that I don’t recollect. We talked with Chest wheelchair). a in around me wheeled (they floors various on tests a trying time with a nurse trying x-ray, and an hour of hydration, and times. Finally she tried another to get blood out of a vein three different vein and it was fine. The nurse called later and said I have a bladder seven days of antibiotics for. I’ve infection which they want to give me getting used to it. I might have been had it for two or three months, was tea. But I didn’t. Botheration. able to get rid of it drinking corn silk I’m sleeping more, and the amount of time I am able to stand up or even stand up or even and the amount of time I am able to I’m sleeping more, that hope and more eat to effort an making I’m shorter. is chair a in sit will help me regain some strength. Golden Throat way less coughing. Dhammagita says I might like these got She do! please them, try can I so pack a me find can you If lozenges. cough drops, even the sugar- them somewhere in Chinatown. American free ones, are too sweet for me. June 9: Golden throat lozenges June 9: Golden throat Richard about documentary a and series) (HBO “Girls” Watching Attenborough. up. There are simple things I can do that help this, like drinking hot hot drinking like this, help that do can I things simple are There up. evening. a bit this I did points. acupressure and using water get past a in again before I appetite will kick Hopefully the skinny now. it’s with weed (actually me some cornbread A friend made certain point. I must one small bite and in weed). I tried that is cooked only the butter it doesn’t in a way that felt my body relax quite a while) I say (after a slightly too. Today I had with my appetite I think it helps otherwise. not remember talking to Padmadharini I could larger bite and later of a sentence. about once I got to the second half what I was talking afterwards. nap excellent an had I well, Oh times. three happened That in quite a while. haven’t seen him

236 Crap, I’ve got cancer 237 What is being me?

But, I don’t feel that tired anymore. I can do a few things. I started But, I don’t feel that tired anymore. I can do a few things. I started I told her I would not do chemo unless I start feeling a lot better better lot a feeling start unless I chemo do not would I told her I 8. I’ll leave the retreat July 6, My next appointment with her is July hasn’t totally sunk in. It was a sobering visit, which probably The brain MRI was checking for ‘disease progression’ only, since an progression’ only, since an The brain MRI was checking for ‘disease On other fronts, energy is variable, but mostly low. Some days I can days I can is variable, but mostly low. Some On other fronts, energy manage to go to be seen is whether or not I can Now what remains Having said all that, I feel a bit more energetic now. I got the Chinese Chinese the I got now. energetic more a bit I feel that, all said Having taking 2mg of dexamethazone (steroid) yesterday but I had more energy taking 2mg of dexamethazone (steroid) yesterday but I had more energy before that. I’m still lying down most of the day, but I’m not sleeping June 21: What is being tired? What is being me? June 21: What is being tired? What the idea, for example, to open, or For the last few weeks I would get in Lying away. feet ten about are which room, my in curtains the close, my bed, I would think about it, off and on, for say an hour. Then I might decide not to, thinking it’s really not worth the effort. Or I’d do it, and in out this lay I recover. to heavily, breathing afterwards, bed into fall ‘the understanding time hard very a have myself I because detail some new tired’. than I do now. She said she’d put me on hospice but since I’m going to to going I’m since but hospice on me put she’d said She now. do I than I do decide to do chemo she’d take be away she’d wait ’til I get back. If start and stop it like that). me off hospice (apparently one can be my last retreat. if not earlier. I imagine that it will accurate scan can only happen 2-3 months after radiation. Some of the months after radiation. Some of the accurate scan can only happen 2-3 some is there but shrunk, has one largest the and gone are mets smaller a low dose of steroids to help swelling around it. She suggested taking and see how it goes. Cyberknife with appetite and energy (and swelling) kind of radiation treatment for could be an option – it’s a super focused to talk to Dr O about options. the brain and/or lungs. She’s going June 19: Dr M in the morning June 19: Dr M in was I which ago) week one (around last her saw I since 4lbs lost I caught a glimpse I’ve been eating a little more. I surprised by, because left lung lobe They revealed that mets in my upper of the lung x-rays. distressing but at least explains the have caused it to collapse. Which is just with live can people Apparently weariness. and breath of shortness a half. one lung. At this point I have one and hardly get out of bed and don’t want to eat anything, other days the other days the bed and don’t want to eat anything, hardly get out of Overall, things. few a do can I and degree some to rejuvenating is sleep be improving. it doesn’t seem to weeks on June 22. on retreat for two June 17: Ceremony June 17: very was It Parami. by led yesterday, ceremony anagarika my had I about the whole time I was a bit worried me, although moving for stamina for it. I would have the whether lozenges. They are very strong but not too sweet. If you have emailed emailed have If you too sweet. but not strong very are They lozenges. have I replied. haven’t I if me forgive please something, me given or me, things. able to keep up with not been

How do I feel? A prisoner of my body, which is going to stop, and a a and stop, to going is which body, my of prisoner A feel? I do How June 22: On retreat latest I’ll be back, the next week or two. July 6 is the I’ll be at Jikoji for to you all. could be sooner. Love as much. You know what else takes energy that I never noticed before? before? noticed I never that energy takes else what know You much. as to make It’s impossible sick. you’re really know when you That’s Humor. for to do much being able Not laugh. making people enjoy I really a joke. recognize I can hardly able to make jokes, often not being myself and in not cooped up somewhere else, I might be happier myself. People say here. everything I need up? Not me. I have But who’s cooped this room. days will retreat in a few stressful. Going on is somewhat Going outside (but thing same the much do possibly I’ll there get I once because fine be options). and meditation place, with help in a prettier swimming, scan- of that. A lone polar bear certain level of acceptance to used get to Other people’s sadness. Trying land. for ning the horizon Eyes closed and or maybe just a different body. being a different person, A clock. A future in a drawer for something lost. a hand feeling around suit. Looking at the ocean. Taking off the hazmat goodbye to myself.

238 Crap, I’ve got cancer 239 What is being me? All of which is beautiful, however, a bit abstract. In Buddhist circles circles Buddhist In abstract. bit a however, beautiful, is which of All moti- the But wiser. and calmer, kinder, one makes aware more Being We all have mixed motivations. But I have found that when I want They said, “You have a blue guitar, They said, “You have as they are.” You do not play things “Things as they are The man replied, the blue guitar.” Are changed upon “But play, you must, And they said then, A tune beyond us, yet ourselves, A tune upon the blue guitar Of things exactly as they are.” and books, one hears a lot about ‘being with things as they are’. What does it mean here? It means that you don’t practice Buddhism or medi- tate to become calmer, or because you told someone that you think you should meditate, or because you want to slow down thoughts, or lower your blood pressure, or even because ‘things know you to aware, want more be to to want be we because kinder meditate We or life. your change sense, deepest the in on going what’s know to words, other in are’, they as inside and out. the and aware, being practice to practice, the aware, more be to is vation action is being aware. And the more we hide or ignore certain realities of our experience, in meditation or in our ordinary is life, to cultivate the awareness. harder The more it deeply aware we become, the more natural, the easier, the purer our wish to be aware. the results of meditation but do not feel – interested a process in of it being as aware – a it process becomes simply another way to suffer, I am in love with this poem poem The are’? they by as ‘things are exactly what question, the begs things Wallace Stevens, which among other shows us that ‘things as they are’ are not solid, but mutable, fluid; not objectively frozen out in space but perceived by someone, by experience. And that experience, that fluidity, is a conversation, with both an active and a receptive flavor. That experience is both ordinary and extraordi- nary. It is a tune beyond us, yet ourselves. Things as they are: fluidity and awareness Things as they are: 4 September 2008 however apparently subtle or noble. And meditation of we can cultivate course awareness every moment – outside we do not of have sitting to have special conditions for that, though mainly But useful. are sit to place quiet relatively a and cushion A help. some conditions certainly the all, of most and friends, spiritual guidance, little a are needed what’s desire to be aware.

240 Crap, I’ve got cancer July 2013 Ghosts in my throat

243 Ghosts in my throat Dr M M Dr

I was surprised to hear her say,

The retreat was wonderful. Because I got a chance to really take in really take in Because I got a chance to The retreat was wonderful. Right now, breathing in sounds incredibly wheezy, like there are wheezy, like there are Right now, breathing in sounds incredibly actually made small talk for the Dr M was being very friendly. She My appetite is back, and I am sleeping much less. The coughing much less. The coughing My appetite is back, and I am sleeping Meeting the hospice lady today. (She had to reschedule to later my current physical situation, not to say predicament. And because my And because my situation, not to say predicament. my current physical day, a meals three me brought there, me of care excellent took friends with a chair so walked with me up to the shower gave me massages, so. I have never catch my breath every 15 steps or I could sit down to as far as I can recollect. so much kindness before, been the object of an environment used to! It’s so nice, too, to be in It takes some getting how and own, one’s really, existence well, ... on is focus the where again one interacts with it. July 6: Sad elephants say a few things. the last two weeks, but maybe I can I can’t summarize ghosts in my throat. Or sad elephants. first time ever. As we were leaving July 9: Learning how to do things slowly July 9: Learning how to do things see to me with came Paris niece and Kathy sister my and Jules wheelchair, which helps a lot with yesterday, wheeling me around in a Still, just getting dressed to go the breathlessness I get from walking. I am learning how to do things out continues to feel like a lot of work. around. more slowly, after a lifetime of zooming but really meant she what sure not I’m person.” amazing an “You’re palliative options. She gave me I’m glad she likes me. We talked about can help. If it doesn’t, some a load of cough stuff to see if something a CT scan would be an option. lung radiation (not Cyberknife) after the moment, I’m disinclined to do Chemotherapy is off the menu. At either. July 6: July in now, breathing Right wheezy, incredibly sounds throat. in my are ghosts like there Or sad elephants. July 13: Hospice first impressions Met with some of the hospice folks this week – an intake person and to changes focus the Here people. cool super are They worker. social a bothers me, and some hip pain. The most disturbing thing is not being most disturbing thing is not being bothers me, and some hip pain. The back Thinking time. the of much so down lie to having or walk to able reduced my how exhaustion somehow ceremony I see my anagarika to personality to the bare minimum. I guess that was radiation fatigue. because of the recent plane crash at SFO.) I miss my retreat massages. If anyone knows a good masseuse who makes house calls, let me know! a young cancer patient) tend to live live to tend patient) cancer young a am “young people” such as myself (I’m 49, I don’t think of myself think of myself don’t I 49, as myself (I’m such “young people” I’ve never moved my body so little. I’ve lost muscle tone. My skin skin My tone. muscle lost I’ve little. so my body moved never I’ve Various people have suggested getting oxygen. It might not help oxygen. It might not help Various people have suggested getting The hospice provides various visitors and some kinds of equipment, kinds of equipment, visitors and some provides various The hospice looks and bed a few nights ago. It’s small, They delivered a hospital around by my niece Paris, and the catering Just got my feet rubbed is different. My body feels like a different body. Generally, my feet are are feet my Generally, body. different a like feels body My different. is my on pad heating the put I If warm. are neck and head my and cold, feet, it will feel good for a while, then my upper body starts to sweat. regulation temperature have patients cancer many said nurse The issues, so it’s not hormonal as I thought. I have written for so long that I have no actual cancer symptoms, that all my symptoms were from treatment. Of course that has changed. beyond the six months estimated once someone is in hospice. beyond the six months estimated once I will bring it up with the nurse next week. She mentioned last week. She mentioned last but I will bring it up with the nurse next that week I but young, particularly as July 24: Somewhat stream of consciousness I’m finding itharder to describe my experience. Partly maybe because I am that wears me out, but the day. Not that I’m talking much of I used to, by necessity. There are spending much less time alone than seems that and days, these own my on manage can I things few so my thought I ago days few a example, For day. every bit a change to to walk a bit further. I was able to stamina was improving, I was able two days though it’s gone the other take a shower standing up. The last lie on my bed panting and steps I direction. After taking maybe ten wheezing for a few minutes, then I feel fine. Sometimes I cough a lot the and speaking) (relatively day one energy have I or all, at hardly or next day I have next to none. keeping one relatively happy and comfy, rather than merely alive. Also, Also, alive. merely than rather comfy, and happy relatively one keeping the on available and they’re is AWESOME, me, which come to they or Tuesday. Monday on the nurse 24/7. I’ll meet phone workers. aids, Caregivers, them. call to what know don’t I ... but no going to other people are nurse and some words, the hospice In other visit at specified intervals,once a week or whatever is decided, to help not going etc., but they’re issues that arise, with medications/pain/any (They morphine. administer or stories me read and hours five for stay to which I would pay for.) can arrange this, well on it ’cuz of and plasticky. I didn’t sleep that smells very hospitaly that pockets sort of It has these mattress. of the top this layer that’s on fill with air ... it’slike lying on a carpet of hacky sacks. I deflated it a which is why I able to easily sit up in bed is great, bit, we’ll see. Being wanted it. spinach and Kathy has made spring rolls, here has been excellent. a have I that feeling I’m quesadillas ... plates, hummus ravioli, ricotta longer. little a vertical stay can I that meaning stamina, more bit little last the in on gone what’s of much Perhaps dry. so not seems mouth My rather than a sign that I have few months really was radiation fatigue, eight toes in the grave.

244 Crap, I’ve got cancer 245 Ghosts in my throat I woke up yesterday morning wheezing with my sacrum throbbing in in throbbing sacrum my with wheezing morning up yesterday I woke sorted my bed got last week (felt great), for acupuncture Saw Misha was good. were here from the four corners. That My three sisters pain. Before that I had been spared dealing with the shortness of breath of breath the shortness with dealing been spared I had Before that pain. like dopey It wasn’t morphine. of the sublingual some I tried at night. deeply most the is breath of Shortness mild. rather actually expected, I up brings It journey. on this with deal had to have I thing unpleasant down slower and sitting in my body. Moving feeling of panic an instant of but after a lifetime than a few steps helps, to walk more when I have adjustment to make. around it’s a hard zooming outside. go to desire little have Still now. wheelchair a have I and out, things. Mainly I much desire in terms of doing In fact, I don’t have stepping outside newfound challenges inherent in want to avoid the Not at all. thought I might be more adventurous. this apartment. I old drawings (most are sweet. I gave them all my They are all super seemed to make which was a relief to me but dated 1979 or 1982) for another while and at the Laura’s going to stay everyone else sad. day a for California southern from up mom my bring week, this of end finish some paperwork. or two. Also help me She She So I was wondering: Am Am wondering: was I So recognize many Buddhist principles, principles, Buddhist many recognize And I’ll let you in on a secret: meditation is great fun! Often we forget forget we Often fun! great is meditation secret: a on in you let I’ll And But let me venture a guess here a minute: instead of the above-docu- My Dear Auntie, me. with Matrix The film the watched she and seven, is daughter My The Matrix Buddhist’ solid gold advice for today’s from ‘Ask Auntie Suvanna: too. me with sequel the see to wants and it, loves Dear Conrad, Dear Conrad, your with do to going you are else what question, first your to reference In daughter, take her to the opera? Be warned though that she will have a very hard time following the dialogue in Matrix Reloaded. Not that it matters. to tell people this. To prove it, I will recount an experience I had. Once after many days of meditating in silence, I walked into the and bathroom saw that the wall was covered with ants. (It was the Sierra.) The ants were moving in fascinating patterns. I was riveted hot – spring in – and stood there like a zombie, contemplating staring at them for various a long time. Now implications, doesn’t that sound like fun? Plus, it was free. mented fun of sitting for hours and hours special violent watching daughter your with hours those spend to prefer and hours in silence, you effects, right? Tell me Conrad, how long do you think it’ll take get enlightened that way? you On the other hand, if to you stick to The Matrix what on attention your focus just – Buddhist a be still can you (original) Morpheus says and watch your breath. I a bad father? The other thing is, I is, thing other The father? bad a I such as the four noble truths, but I don’t want to be a vegetarian, and Buddhist? Can I call myself a meditating is no fun. Conrad Thanks in advance,

246 Crap, I’ve got cancer August 2013 The view from inside Aug 3: Mom and me 249 The view from inside (2013 edition; first published published Things to Do (2013 edition; first Cancer: 50 Essential Then Anderson urges his readers to “Seek the gift in cancer. It’s the gift in cancer. It’s Then Anderson urges his readers to “Seek fluke; the cancer-as-gift Anderson’s way of putting things is no diagnosis of a rare form In the two-and-a-half months since my will appear sometime in But maybe the gift is yet in hiding and thing: The hundred ways, I don’t think so. And let me clarify one Ehrenreich is one of my guides on this topic. She concludes her “Breast cancer, I can now report, did not make me prettier or Is Cancer A Gift? by Barbara J. King Anderson’s It says so right on page 203 of Greg There’s a gift in cancer. book as saying this the singer Olivia Newton-John 1993). Anderson quotes “I see it [cancer] as a gift. about her “journey through breast cancer”: think I would have grown in the I know it sounds strange. But I don’t areas I did without this experience.” there.” used it in writing for the trope is all too popular. Mark McKinnon does not buy into) Daily Beast, and Barbara Ehrenreich reports (but . other examples over at the Guardian locating any gift in cancer. I of uterine cancer, I’ve not succeeded in love and support of family have discovered that, with the steadfast of extensive surgery and of and friends, I can deal with the effects related to the removal of chemotherapy, ranging from discomfort lymph nodes and intense pain in various bodily structures including 29 people) an infusion of carbo- muscles and bones that follows (for some oral thrush. It’s hard work, this platin and taxol drugs, to fatigue and recovery. regime and, later, radiation the next six months as the chemotherapy continues? and emotional support from large and small, that I’m shown logistical those who care about me is because of the generosity of the people in my life. In no way does cancer get the credit for that. essay on “the bad science of positive thinking” this way: stronger, more feminine or spiritual. What it gave me, if you want to call this a ‘gift,’ was a very personal, agonizing encounter with an ideo- logical force in American culture that I had not been aware of before – one that encourages us to deny reality, submit cheerfully to misfortune and blame only ourselves for our fate.” August 1: Is cancer a gift or a battle? August 1: Is cancer “Is Cancer a on NPR (National Public Radio), This short blog post to being told that cancer is It’s about a reaction Gift?” was interesting. a gift. Another of my guides is Lisa Bonchek Adams. Adams, also a writer, a writer, also Adams, Adams. Bonchek is Lisa guides of my Another to share. something you want “A gift is to someone else. you want to give “Something need to give a say ‘Next time I [about which] you “Something not that thing. “Cancer is “Language matters. are to describe illness, death, and emotion “The words we use Language matters. How right Adams is: to 50 Essential Things to Do, urges patients Anderson, in Cancer: with these last two affirmations to people It’s no gift to suggest cancer. There is no gift in Perhaps earlier, more inspired phases of this blog would have driven of this blog would have driven Perhaps earlier, more inspired phases Which is the opposite of a fight, or a battle, the popular language things is a problem. The point I Telling someone how they should see and a person with stage IV metastatic breast cancer, is a friend of mine of mine is a friend cancer, breast IV metastatic stage person with and a is a only, she media social other through know each we – although - post some in a blog writes she cancer-as-a-gift, On nonetheless. friend resonated with me: thing that I want to give.’ I care, this is what to show someone special gift choose them carefully.” important — we should rather and see it as “an inspiring challenge “reframe” their disease the patient, also suggests some affirmations for than a threat.” He out perfectly filled with hope to This is going to turn ranging from I am of my cancer. and I am in charge cancer. August 3: Visitors galore The last few days I’ve felt better when I wake up, which is to say, not horrible. No more dizziness. And I am able to walk a few more steps than appropriate (more less eat to trying been I’ve changed? What before. by caused digestion slow with little very moves who someone for amount meds), and I started watching the British TV series Shameless. Those the woman who wrote that article crazy. I don’t feel that cancer is giving I don’t feel that cancer is giving the woman who wrote that article crazy. a certain point of view ... whatever me a lot of gifts now, although from a more useful way to look at it, life doles out is a gift, or at least that’s some there is assumes this guess I alternative. possible, than the when whatever it delivers. I think of in human experience, potential value in of those in other religions who this as roughly equivalent to the views strive to live with ‘God’s will’. One model is rather more passive, these days in talking about disease. agent of my own destiny, I shall or receptive. The other is, I am an in mortal combat, and I shall think positively. Cancer and I are engaged failed). conquer it (and if I do not, I will have to other people, without our suppose is to learn how to be truly sensitive reminds It do. to easy not is It way. the in getting advice or views own gift greatest The like, something said who teacher Buddhist a of me to our friends by understanding we can give is to be less of a problem ourselves.’ Communication is a sensitive thing, I suppose for everyone. How much much How everyone. for suppose I thing, sensitive a is Communication involved. are discomfort, vague just or grief, or fear when difficult more

250 Crap, I’ve got cancer 251 The view from inside

NYT in the morn- life easier (though I sort of hate them, them, hate of sort I (though easier life

The Earthsea Quartet. Can’t really engage at the mo. with at the mo. with Gods. Can’t really engage American

Celibacy and Buddhism: Bits and Bobs on Sex and the Divine I haven’t actually seen it yet. I hope I remembered to get permis- I haven’t Mom. Oscar from Seattle. Brothers-in-law. Seattle. Brothers-in-law. week. Mom. Oscar from Visitors galore this Jayacitta in supposed to be co-leading with The retreat I was On another note, here’s the brilliant convocation speech George On another note, here’s the brilliant convocation speech George I’m turning 50 in a few weeks. Don’t know quite how I feel about know quite how I feel about I’m turning 50 in a few weeks. Don’t they can do for me, and up until People often ask if there’s anything It’s Amazon. on available is edited I writings of compilation The When I seem to be experiencing an upswing in general, it could it could general, in an upswing to be experiencing I seem When Guin’s Le Ursula Reading August 7: Caffeine, soup with Hridayashri, my body Had a cup of black tea and meditated good to meditate, which I’ve done buzzing with caffeine. Still, it was weaker. For example, the effort little of since cancer. I think I’m getting have previously noticed is a to stand up from sitting on what I wouldn’t for the shower, and a toilet seat low chair. So, gadgets. Namely, a chair make things these Both raiser. Many folks passing through on their way home from the retreat. Old Old retreat. the from home way their on through passing folks Many us an omelette ... (from So. Cal.) currently making pal Jeff is here now was Paramananda stellar the Thankfully yesterday. started Scotland For them! I’m so that worked out very well. Well. able to replace me and cooking and zooming around, sorry not to be there. I miss walking Friends, having lives in the world although in a way, not that much. I which email, on and person in news, their me bring room, this outside much energy you have. enjoy. You people have no idea how ings. Also: St. Lucy’s Home For Girls Investigates. Singh Raised By Wolves. Inspector weighty topics. Also enjoying music – a French radio station, fipradio. fr, and Pandora shuffle. Saunders gave at Syracuse. I read somewhere that he is a Buddhist Saunders gave at Syracuse. I read somewhere that he is a Buddhist which is not surprising. sion from everyone for reprinting! I need to get back to this book project sion from everyone for reprinting! I need to get back to this book project before I run out of energy entirely. Life. that. Perhaps not overly celebratory. I had wanted to go on a cruise in I had wanted to go on a cruise in that. Perhaps not overly celebratory. a lot since then. I guess I need Norway. Things have scaled back quite to have a plan of some kind. But I have lost a lot of function- the present there has not been much. would that sometime lunch some over bring to like you’d If lately. ality be great. called too). are the only things I can think of! I did introduce a small amount of of amount a small introduce did of! I think I can things only the are I’m enjoying. diet which into my back caffeine just could also it but while, a for improving are etc., stamina, my mean don’t I disease! My disease. my of progression non-linear the of part be a do to able being enjoy I Anyway before! that said ever I’ve if know back! walk and room another into walk (like myself for more bit little Have a shower without needing to somehow build up the energy first.) often a surprise. Tomorrow’s And I intend to respect that tradition. to respect that And I intend to in addition do with an old person, useful thing you can Now, one really. Being poor from time to time? Not So: What do I regret? But here’s something I do regret: our class. In the interest In seventh grade, this new kid joined and was mostly So she came to our school and our neighborhood, alone in her front yard, as if Sometimes I’d see her hanging around End of story. Now, why do I regret that? Why, forty-two years later, am I still But still. It bothers me. So here’s something I know to be true, although it’s a little corny, What I regret most in my life are failures of kindness. Those Down through the ages, a traditional form has evolved for this type of type this for evolved has form traditional a ages, the through Down over him, who, behind best years old fart, his is: Some which speech, made life, has of his the course (that would mistakes dreadful a series of young energetic shining, group of to a advice gives heartfelt be me), (that would be you). years ahead of them all of their best people, with do one of their old-time or asking them to money from them, borrowing what ask: “Looking back, while laughing, is so you can watch, “dances,” as you know, they’ll you. Sometimes, And they’ll tell do you regret?” you’ve specif- haven’t asked. Sometimes, even when tell you even if you not tell you, they’ll tell you. ically requested they (And like “knuckle-puller in a slaughterhouse?” Working terrible jobs, Skinny- that entails.) No. I don’t regret that. don’t even ASK what up and Sumatra, a little buzzed, and looking dipping in a river in into the sitting on a pipeline, pooping down seeing like 300 monkeys open, naked? I was swimming, with my mouth river, the river in which the next seven ill afterwards, and staying sick for And getting deathly Like Do I regret the occasional humiliation? months? Not so much. girl I really in front of a big crowd, including this once, playing hockey weird while falling and emitting this liked, I somehow managed, while also sending my stick whooping noise, to score on my own goalie, that girl? No. I don’t even regret flying into the crowd, nearly hitting that. name will be “ELLEN.” of confidentiality, her Convocation Speech blue cat’s-eye glasses that, at ELLEN was small, shy. She wore these nervous, which was pretty much the time, only old ladies wore. When of hair into her mouth and always, she had a habit of taking a strand chewing on it. taste good?” – that sort of ignored, occasionally teased (“Your hair remember the way she’d look thing). I could see this hurt her. I still a little gut-kicked, as if, having after such an insult: eyes cast down, she was trying, as much as just been reminded of her place in things, drift away, hair-strand still possible, to disappear. After a while she’d school, her mother would say, in her mouth. At home, I imagined, after and she’d say, “Oh, fine.” And you know: “How was your day, sweetie?” and she’d go, “Sure, lots.” her mother would say, “Making any friends?” That was it. No tragedy, no afraid to leave it. And then – they moved. next day she wasn’t. big final hazing. One day she was there, thinking about it? Relative to most of the other kids, I was actually pretty nice to her. I never said an unkind word to her. In fact, I some- times even (mildly) defended her. and I don’t quite know what to do with it: moments when another human being was there, in front of me, suffering, and I responded … sensibly. Reservedly. Mildly.

252 Crap, I’ve got cancer 253 The view from inside Or, to look at it from the other end of the telescope: Who, in your your in Who, telescope: of the end the other it from at to look Or, bet. to you, I kindest who were Those implement, but I’d certainly hard to facile, maybe, and It’s a little Why aren’t What’s our problem? million-dollar question: Now, the I think: Here’s what - that are prob of built-in confusions is born with a series Each of us we know believe these things – intellectually Now, we don’t really How might we DO So, the second million-dollar question: Well, yes, good question. left. Unfortunately, I only have three minutes You already know that So let me just say this. There are ways. – it starts out all rainbows Because kindness, it turns out, is hard kinder” happens One thing in our favor: some of this “becoming And so, a prediction, and my heartfelt wish for you: as you get life, do you remember most fondly, with the most undeniable feelings feelings most undeniable with the fondly, most you remember life, do of warmth? Try to be kinder. do worse than: in life, you could say, as a goal we kinder? the universe These are: (1) we’re central to ably somehow Darwinian. story, story is the main and most interesting (that is, our personal (there’s (2) we’re separate from the universe the only story, really); and all that other junk – dogs and swing-sets, US and then, out there, know, other and low-hanging clouds and, you the State of Nebraska – for you, but permanent (death is real, OK, sure people), and (3) we’re not for me). and they them viscerally, and live by them, better – but we believe even our own needs over the needs of others, cause us to prioritize selfish, more want, in our hearts, is to be less though what we really more open, happening in the present moment, aware of what’s actually and more loving. open, less selfish, more this? How might we become more loving, more present, less delusional, etc., etc? High Kindness periods and Low because, in your life, there have been inclined you toward the former Kindness periods, and you know what good; immersing ourselves in a and away from the latter. Education is good; a frank talk with a work of art: good; prayer is good; meditation’s spiritual tradition dear friend; establishing ourselves in some kind of really smart people before – recognizing that there have been countless and left behind answers for us. us who have asked these same questions … well, everything. and puppy dogs, and expands to include matter of attrition: as we naturally, with age. It might be a simple it is to be selfish – how illog- get older, we come to see how useless thereby counter- ical, really. We come to love other people and are get our butts kicked by real life, instructed in our own centrality. We us, and we learn that we’re and people come to our defense, and help see people near and dear to us not separate, and don’t want to be. We dropping away, and are gradually convinced that maybe we too will drop away (someday, a long time from now). Most people, as they age, become less selfish and more loving. I think this is true. The great Syracuse poet, Hayden Carruth, said, in a poem written near the end of his life, that he was “mostly Love, now.” older, your self will diminish and you will grow in love. YOU will gradually be replaced by LOVE. If you have kids, that will be a huge moment in your process of self-diminishment. You really won’t care what happens to YOU, as long as they benefit. That’s one reason your e e – to find out if we’v – understandably we’re anxious When young, that OK. If we’re going to become kinder, And this is actually that is unreliable. “Succeeding,” whatever Still, accomplishment your life advice: Since, according to me, So, quick, end-of-speech things – travel, get rich, Do all the other things, the ambitious you great happiness, all the Congratulations, Class of 2013. I wish parents are so proud and happy today. One of their fondest dreams has has dreams fondest of their One today. happy and so proud are parents e that and tangibl difficult something have accomplished true: you come from here better, your life will make and as a person you has enlarged the way. by Congratulations, forever. on in, a viable life for Can we build it takes. Can we succeed? got what generation – may have you, of this But you – in particular ourselves? do well in high- to ambition. You certain cyclical quality noticed a in the you can do well a good college, so hopes of getting into school, in in so you can do well getting a good job, in the hopes of good college, can ... the good job so you as accom- taking ourselves seriously – as doers, process has to include selves. We have to do that, to be our best plishers, as dreamers. renews is hard, and the need to do so constantly might mean to you, of you as a mountain that keeps growing ahead itself (success is like will the very real danger that “succeeding” you hike it), and there’s life, while the big questions go untended. take up your whole more loving: process of becoming kinder and is going to be a gradual in each along. Start right now. There’s a confusion Hurry up. Speed it But there’s also a cure. So be a of us, a sickness, really: selfishness. desperate patient on your own good and proactive and even somewhat anti-selfishness medicines, ener- behalf – seek out the most efficacious getically, for the rest of your life. make and lose fortunes, swim get famous, innovate, lead, fall in love, having it tested for monkey naked in wild jungle rivers (after first you can, err in the direction poop) – but as you do, to the extent that you toward the big questions, of kindness. Do those things that incline you and make you trivial. That and avoid the things that would reduce personality – your soul, if you luminous part of you that exists beyond that has ever been. Bright as will – is as bright and shining as any as Mother Teresa’s. Clear Shakespeare’s, bright as Gandhi’s, bright from this secret luminous away everything that keeps you separate it better, nurture it, share its place. Believe it exists, come to know when you’re 100, and I’m fruits tirelessly. And someday, in 80 years, we’re nearly unbearable, drop 134, and we’re both so kind and loving been. I hope you will say: It me a line, let me know how your life has has been so wonderful. luck in the world, and a beautiful summer. August 12: The view from inside Today I was thinking about the book Dying: A Natural by Passage - Denys Cope, which a bunch of us were reading recently. It’s an excel lent book – short, super informative and also comforting somehow. But it is from the point of view of the caregiver, as are all the hospice books, give a to try I’d thought I me? for it like What’s reasons. for obvious of time staring length some for bed my I was lying on Tonight glimpse. into space with the following list in my head:

254 Crap, I’ve got cancer 255 The view from inside

1. Throw away the used dental floss in my hand. in my floss dental the used away Throw 1. if poss. a crap 2. Take cough. infernal with this to deal morphine some 3. Take puffing and huffing while a there sit I toilet. the to trek a rest, a After Yesterday I like crazy for the last few days. I’ve been coughing So that’s a snapshot. many tasks that often take me Getting up in the morning involves dreadful, low energy, and can’t Some mornings I wake up and feel very nice food. Hot soup Friends have been bringing over lunches, Now it’s around 10pm, and I’m trying to finish this post before bed, The trash can for throwing away the floss is a fewfeet from my bed, by moving Sometimes, movement. require it does But far. not accounts, all – no idea So I lie here an enormous effort. inches feels like even a few over, I laboriously turn some unknown force it is – ’til due to how long to (possibly floss dental the toss and closet, my on curtain the back pull if I miss!) the floor little garbage knock over the walk. Inadvertently recover from the to from it. Do I just toilet seat I’m about a mile away bin. With my raised put the spilled nasty. I manage to kneel down and leave it? No, that’s successful set it upright. Rest a while. Crapping contents back in and constipation, cause taking am I meds (multiple painful always though case, my digestion relieve it to some degree). In any though other ones happens very slowly. a few weeks thick brown goo. The doctor that came coughed up some on the cough, I might be less tired if I got a handle ago suggested that the morphine taking about hesitant so Not do. to trying I am which coughing, the stop will that thing only the been has which anymore, Sometimes the cough syrup besides making me feel super relaxed. works fine. a long time. Sometimes I fall asleep between things, and when I wake wake I when and things, between asleep fall I Sometimes time. long a is drenched in sweat. My body is up my upper body, my neck somehow, full of surprises! a such like seem don’t things easier, it’s others On all. at much manage chore. I feel better when I eat less. love to write about some visitors I’ve lately has been hitting the spot. I’d anymore. detail of kind that for energy the have don’t I but lately, had this blog) and it is hard to work on Also, I’m working on my book (from both. but I probably won’t. My laptop and I am lying on my bed is on my table, ... Pandora on guitar flamenco to listening hand, left my with this typing August 14: By way of contrast Woke up feeling rather chipper this morning. Everything not such a slog. Possible factors: Hydration – been drinking lots more. Had been getting super dehydrated at night (partly due to drugs.) Recovering stopped have forehead and Ears May? in radiation brain from more peeling also. It’s not about eating less, as I ate like a sow yesterday. Or - was it Laura’s awesome foot massage? Reasons perhaps are unknow able, but I am enjoying it. I’m not going to agonize about it. For the moment I’m just, as Rilke the moment I’m just, as Rilke I’m not going to agonize about it. For Had a good chat with my dad today. Ordered some Dutch and Finnish licorice online. Laura is a fan, too. So many things to let go of. than I thought I would want My birthday was fun, saw more people Then my hips started aching. Took two ibuprofen and a little while while and a little Took two ibuprofen hips started aching. Then my a doctor came and Laura are here. Mary Jo and Jules, Padmatara says, “living the question”. August 23: What is a waste of time? Every day I look at Facebook, which usually means finding out what less or more a clicking about, thinking they’re what today, did someone I don’t post anything myself. I interesting link, or looking at photos. look at Twitter and the New York . I play Bejeweled Blitz (a one Times doing these things, but do I want minute game). I don’t spend all day Saunders’ like gem, rare a is there Sometimes all? at them doing be to speech the other day. to! August 22: I don’t recognize my arm August 22: I don’t body. Mushy would be one way to My body is turning into a different and muscle tone – and it reminds describe it. I look at my arm – the skin who died many years ago. And me of the arm of my grandma Bruun, somehow makes me feel worse, even the most mild physical activity wheeze for a while. What my body makes my lungs ache and pant and it seems from my current point of wants, craves really, is to lie still. But digest can you reason the It’s alive. you keeps what is moving that view falling. food and get tired and walk without August 18: Pharmaceutically-enhanced living Pharmaceutically-enhanced 18: August I am when do much I can’t medicine. for modem grateful I was Today up myself barely pull I can my body. hard on it’s very a lot, coughing 2mg sublingual morphine, syrup, I took bed. After trying cough from my even isn’t difference The stopped. cough my later minutes few a and - exhaustion/tension/restless It’s coughing. not vs. coughing primarily very getting are lungs my like feels It relaxing. vs. panic ness/slight away. tightness melts almost, then that small for breathing small, too the treatment I Come to think of it, I guess without later, I feel great. did, it which longer, alive you keep to supposed It’s now. dead be I’d got, suggestion to try with a high quality of life. Got the in my case anyway, complicated of morphine. It seems actually rather marijuana instead use best the (i.e., marijuana medicinal of what and how the out figuring for me, if any). helpful. be would get that could I kinds of equipment this morning. All them. I’ll probably wait ’til I can’t do without Though I am weak,

256 Crap, I’ve got cancer 257 The view from inside Dhammapada, transl. Buddharakkhita) There are those who do not realize that one day we all must die. do not realize that one day we all There are those who realize this settle their quarrels. But those who do ( Sometimes irritations fade away on their own. And sometimes we And so it builds into a burden. Each time the thing happens, the What can be done? We can learn the basics of Nonviolent Communi- 1. If there is some issue or resentment that keeps point of bringing it up with the person when things are harmonious. coming up, make a 2. Look deeply at your motivation for bringing it up. 3. Though it may end up helping the other person, do not think of that as the purpose. Think of it as a way for you to practice engaging more honestly and effectively with friends. My advice to myself is: Many of us have virtually no experience of response to disharmony. We have known too much criticism and blame. honest communication in speak we anything, say to manage we If models. no training, no have We in sweeping generalities, or inadvertently assassinate someone’s char- acter, or seem to just want to be right. We are afraid to share clear and affect us. We fear losing love. kind information about how things rationalize failing to respond honestly to a repeating situation. Maybe we think we should be able to resolve it that excuse the on have we or states’), mental our one’s for responsibility ‘taking own (a near enemy to the other person can’t handle honesty, or we are sure they won’t change so there’s no point, or our of fear we decide to avoid the person ... or we Any of these sound familiar? just try to say something and can’t. situation becomes more entrenched. We’re too annoyed or exasperated to bring it up. And when things are good, bringing it up appears to be totally unnecessary. cation and practice it. If we don’t want to do formal NVC, we can keep been has me for ones useful most the of One principles. basic the mind in using very specific examples. Consider potential responses to “When you closed the door last night, it woke me up.” vs. “Why are you so inconsid- erate and always slamming doors?” On conflict with friends On conflict with 25 May 2010 4. If you think it will be hard for you to articulate it skillfully, practice first until you are more comfortable. with someone else 5. State the reason for bringing it up. Example: “I have noticed I have some resentment toward you, which I feel is kind of a barrier between us. I was wondering if it would be ok with you for me to through.” try to talk it use concrete examples. 6. Don’t speak in generalities; 7. Remember it is not the other person’s fault that you feel how you feel. awkwardly perhaps trying are you and influence, an were they However, them how things are for you. at first to share with 8. Is there a specific request? If so, be clear about what it is. Don’t ask someone to overhaul their personality. They can’t. Let them something know do to willing how are they if ask and you affects specific something say no. specific related to it. They are free to conversation the reaction, bad a has person the if even that Remember 9. at least you tried! still may have some benefit. If it doesn’t, 10. If misunderstanding increases, re-state that the reason for bringing it up was to connect more deeply, and apologize for any unskillfulness on your part.

258 Crap, I’ve got cancer September 2013 How much life? Summer retreat sunset 261 How much life? How much life? : Part of the cause of all the sleeping is that typing on my laptop in my laptop in of all the sleeping is that typing on Part of the cause been in. My body has been so I wish I could explain the states I’ve came over with some great A couple of weeks ago several people tomorrow. Misha seeing be may I muffins. some by dropping is Helen OK, I better write the rest in another post! September 5 bed is so unergonomic that it was causing new pain in my side, the way way the side, my in pain new causing was it that unergonomic so is bed with one hand. So then I didn’t I’d prop up on one side for hours typing is (and pounds of hundreds weighs which laptop, my out get to want the phone is pretty handy but usually a hundred miles away!) Using But my point was, doing computer you can’t do everything on a phone. I feel I need to do. I did make a stuff also keeps me occupied with what which game, computer/phone inane my against vow one-day-at-a-time I’ve kept to for ten or so days so far. since moving often evokes at peace it doesn’t want to move, especially a coughing fit. Anda soup of swirling images. A sound-bite will merge into something visual, to a memory flash from yesterday, to something seen haven’t I show TV a from scene a to tomorrow, happen might that see an image of somewhere I went in a month. With my eyes closed I’ll do to what of thinking of thinking bed in lying I’m realize Spain, in wonder is it a time to take a pill?, next, then wake up (an exaggeration), hours later with the pill still in yes it is, then I doze off, wake up two due to different before but, lost it hand ... I tried dictating this once my Kathy and Paulette are coming to devices overwriting each other. Both think. A lot of times I am looking at visit this month. It’s hard for me to something, not really looking at anything. lunches! I updated my food tab if you are thinking about that – simple things that are easy for me to digest. I seem to be winding down on that body my maintaining with occupied so am I because perhaps though, etc. aches, coughing, arise, that issues other or pain, with dealing – Talking can also be a strain because it makes me cough more. Yesterday I was talking to Danamaya and counted four times that I forgot the far.) so again, it find always can I (Thankfully sentence. a of half second Changes in the last week or two such that I’m not sure where to begin. where not sure that I’m two such or week the last Changes in pain and and ibuprofen for it was suggested I take morphine Monday On standards it’s rather than “as needed”. By medical coughing regularly in my hip bones So I did. Result has been no pain still “not that much”. day. I’d of sleep all and out And dozing in coughing. and less and knees, haven’t simply I but week, this day each paperwork my finish to resolve – was helping. Laura – bless her cotton socks had the mental ability. Laura arrives back tonight, so the four sisters will be together for a Laura arrives back tonight, so the four sisters will be together for a Some people at the Buddhist Center will be organizing meditation meditation organizing be will Center Buddhist the at people Some Take care of yourselves and each other. The hospice nurse visited yesterday, and some of you know or you know or visited yesterday, and some of The hospice nurse times, many said been has as and, family her by surrounded is She I had crazy dreams, not creepy ones, crazy – I was dreaming – I was at crazy – I was dreaming – I was at I had crazy dreams, not creepy ones, musicians were real. Ivor Cutler. the seaside – but I wasn’t sure if the matter where they’re I’m not sure whether – I suppose it doesn’t coming from or going at this point. little while. September 23: Much quieter After a couple of days of being wide awake and commenting on everything she saw, Suvarnaprabha became much quieter yesterday afternoon, at communicating hardly is she morning this now and sleepy, more and all. She is very weak and can’t swallow food. September 22: Crazy dreams a awake and talking – wide Things were different again this morning best I can. lot. Thought I’d share a snippet as and chanting at various times in the next few days – I’ll post the infor- the post I’ll – few days next the in times various at chanting and mation here. September 21: Curious and surprised commenting world, own her in more and more seems Suvarnaprabha we could). It is increasingly wish see (though I we can’t on things that curious and surprised, but not hard for her to communicate. She seems a lot more help as time goes on, particularly worried by this. She needs she accepts it now with grace and mostly from her gentle sisters, and humor (mostly). September 20: What she see is quite lovely quite is see she What 20: September has She for Suvarnaprabha. fast are changing Things Padmatara: From but friends to see her she loves while – for a visitors not to have asked she will, the books tell us to be doing what tiring. She seems it is very visioning – they call it sees things inward. She sometimes going more beautiful is quite lovely: and what she sees common – and it’s pretty at down looking friends her and her with bridge a ceiling, the on trees hard for but it is can still talk beautifully kind of thing. She her – that now. isn’t happening right anything that and speak about her to think unlikely it’s but published, blog this get to her for important very is It and Vidyadevi are much more herself. Candradasa she will contribute working on it. guessed this already, but it seems the difficulty speaking and thinking progressing, disease the just but morphine, of taking result the is not just appetite, little very has She process. dying natural the and fatigue, now and then. a bite or two of food and her love all you knows She imagine. to possible it’s than love more she loves you back.

262 Crap, I’ve got cancer 263 How much life? The Center is commencing a 24 hour program of collective practice of collective practice a 24 hour program is commencing The Center an begin we will the morning at 6:30 in starting Sep. 25, Tomorrow, in the the beginning of each hour of practice, You can arrive at will let you news of memorial arrangements we As there is more (Walking shoes will be helpful as we are walking to her plot up a hill. hill. a plot up her to walking are as we helpful be shoes will (Walking what we’re saying!) Leave your Jimmy Choos behind is to place on her grave, please do. If you would like to bring a flower to welcome all of you who would The Buddhist Center doors will be open like to gather after the service. Please join us on Friday, Sept. 27th from 1pm-3pm at Fernwood 27th from 1pm-3pm at Fernwood Please join us on Friday, Sept. Cemetery, Mill Valley We are planning to come together to help each other say good bye to our help each other say good bye to our We are planning to come together to extraordinaire, Suvarnaprabha. dear friend, sister, mentor, and woman Dear Friends, September 25: Woman extraordinaire September 25: Woman to support Suvarnaprabha and her community of friends and family in family in of friends and and her community Suvarnaprabha to support this transition. night class. that will end with our sangha hourly cycle of practice 5:30pm. to up day the through on so and 8:30, 7:30, 6:30am, morning We’ll end with sangha night together from 7-9pm and a final transfer- imagine and day the through straight practice will We merits. of ence in places near and far. people joining us has been and is now, beyond description. know. Suvarnaprabha Dear friends of Suvarnaprabha, friends Dear Julie and Padmatara with her sisters, died at home, Suvarnaprabha hearts yesterday. Our right up through She was conscious right by her. grieving. all those who are go out to September 24: Transition 24: September The Bodhisattva’s New Shoes The Bodhisattva’s 11 October 2010 cabrones: Mark these words and again I will come back again chase me and loving dogs will yapping and jumping. robe I’ll come not in a saffron from but in boots made titanium car tires, recycled and a cowboy hat when it’s raining. Not clinging but singing a hill) (a virtual Julie Andrews twirling on straddling a bike with leaking fork seals (Europe and Asia’s waited-for beginner mind) (and loving dogs will chase me) The occupants of this this this world however it is will be my lovers the pigs the birds hedgehogs foxes bald people in hospitals devas Anonymous Sex and Love Addicts whispering behind walls

264 Crap, I’ve got cancer 265 How much life? Todo el mundo sera mi amante, señores Todo el mundo sera teach it anything, ever, and I won’t try to (I will only love it) in Dolby) (a howler monkey joy from my laughter (the vibrations of in the hell realms) will soothe the psychoanalysts A gentle kiss pure love steaming out the front end of a vehicle which is the unadorned body the soft strong body (think of loving dogs) like this like steam, like the sweet smoke of a down, Cuban cigar, radiating up, sinking in this this this world returning again coming back forever