My Truth: Women Speak Cancer

MY TRUTH WOMEN SPEAK CANCER

REBECCA A. HOUSEL

Ph.D. in Creative Writing 2007 Housel ABSTRACT:

1) My Truth: Women Speak Cancer is a creative nonfiction based on three years of interviews with twelve survivors told through the lens of the author's experience as a three-time, sixteen-year survivor of multiple cancers. Each chapter features a different survivor and her story; the cancers discussed include non-Hodgkin's lymphoma, Osteosarcoma, Melanoma, as well as brain, ovarian, breast, and thyroid cancers. Current definitions, treatments and statistics are included at the end of each chapter. The book ends with a comprehensive After Words, combining poetry and prose, taking the reader on a further journey of introspection on life, love, friendship, and loss. 2) The Narrative of Pathogynography is a critical exegesis using established theory in the fields of creative writing, sociology, ethnography, literature, and medicine to examine and further define the sub genre of the theoria, poiesis and praxis involved in creating women's illness narrative, or what Housel terms, pathogynography. Housel develops original terminology to define yet undiscovered spaces based on her work in My Truth: Women Speak Cancer.

KEYWORDS: Pathogynography, autopathogynography, embedded autopathogynography, entrenched narrative silence, ethnogynography, meta- ethnogynography.

For all women who have suffered and grown with cancer, as well as their families and friends.

Acknowledgements

First and foremost, my thanks go to the women of this book, eleven individuals who generously shared their stories, their truths. The help of their families and friends is also greatly appreciated. For my own part, I must thank my husband,

Bob, and son, Gary, both of whom gave me unending support and joy, allowing me to have the courage to sit in my red room and write for three years. Suzanne

Eggins and Anne Brewster, at the University of New South Wales, receive thanks for their supervisory support and expertise, patience, careful editing, and last but certainly not least, friendship. Bill Ashcroft, Peter Alexander, Paul Dawson,

Soren Brunkhorst, David Choe, and Simon Watson at the University of New

South Wales also deserve gratitude for their help and consideration. Ethan

Schwartz, my brother, receives my appreciation for making himself available to listen, and also, to help find resolutions when a problem needed solving. Many of the interviews for this book took place at Tastings, a neutral zone that provided both good comfort and hospitality—my thanks to Deb, Jill, Kelly, and

Nicole. Jean Lourette and Amy Libenson Shulman receive thanks for editing efforts and friendship. Chris E. Arnold is acknowledged for her part as a friend and supporter, as well as a person who helped me to locate a very special person

to interview for the volume. My mother, Marguerite Thomas Schwartz, as well

as Eva Schwartz Barson and Mary Conley Thomas, my grandmothers, are

thanked for instilling a love for all stories. iv

Table of Contents

Acknowledgements...... iii Table of Contents...... iv 750 Words about Cancer...... 1 A Prologue, Written in Eight and Eight...... 4 Marina’s Story ...... 11 Sue’s Story...... 26 Stephanie’s Story ...... 46 Teri’s Story ...... 63 Jacquie’s Story...... 85 Ivy’s Story...... 103 Alanna’s Story ...... 116 Joan’s Story...... 131 Maxene’s Story ...... 146 Kathryn’s Story...... 163 Rebecca’s Story ...... 190 After Words … with commentary ...... 210 These Words ...... 210 For Stephanie ...... 211 Saying Goodbye...... 211 Unstoppable Woman...... 212 String Theory ...... 213 Wait for Me...... 213 Special Relativity...... 215 My Friend Sue...... 220 Questions...... 221 SHaKeSPeaRe...... 222 Ode to the Young...... 229 For Always...... 230

750 Words about Cancer1

The ceiling creaks with every step. My family moves in clandestine patterns

while I type at the computer in my red‐room below. The room is red for a reason, not just because I enjoy the color, though I do. The red is for passion, the

kind of passion that can take a person to the extremes of joy and pain. I’ve been

marked by both, and so paint my writing room red, to remind me.

I seek the shrouded truth of Vedanta, the light of God in Christianity, the

sechel, or reason, in Judaism, and the compassionate wisdom of Buddhism. All

keys to the universe, just not mine. As a cancer patient, there is no single key.

How can there be? The universe is a large, complex place with many white‐

coated gods in sterile hospitals. Mine is a polytheistic world.

I have survived three cancer diagnoses in the last fifteen years, two brain

tumours and Melanoma. I’m thirty‐four. Is there sense in sensibility? Is there

brevity in wit? And what about the soul? Lots of questions, very few answers—

that’s something you get used to. You have to.

There are a great many “have‐to’s” when you face cancer. You don’t want to

have your skull drilled full of holes, then, listen to doctors play connect‐the‐dots

with a surgical saw, and lift out your skull, exposing the fragile gray matter

beneath. You don’t want to be awake with a valium drip for the seventeen‐hour

surgery. You don’t want to recognise in hour‐ten that you cannot move the left

1 This piece was first published in Brevity: A Journal of Concise Literary Nonfiction in September 2006 and reprinted in Survivor’s Review, January 2007

side of your body in panic and fear, and have an anesthesiologist named Surriel

tell you to not be upset because you are going to sleep now. You don’t want any

of those things, but it doesn’t matter what you want. You have to.

You have to face weeks in a rehabilitation hospital with nurses who disguise

bullying with care. You have to go on to endure nine months of intensive

chemotherapy where you lose ninety‐pounds, your balance, and your

feelings…about everything. You have to consider the unthinkable: What will

happen to my family if I die? What will happen to the $60,000 in student loans?

Will my husband have to repay that, if I die? Will my son grow up to be a good

man? Will my husband find a new wife? Will anyone remember I used to sit in

a red room and write? Lots of questions. No answers.

I’ve made a discovery though, now being an expert on questions without

answers. The question of why is always irrelevant. The only true question is

why not. Why not? Why not get sick? Why not die? Why not get well? Why not travel to Australia? Why not live every moment to the very fullest? Why not? Not why.

The language is important. You predict the future with your words.

Coelho’s conspiring universe will help, too. You’re like an alchemist trying to

turn lapis exillis into gold. But there is no holy grail—it’s a stone called

Moldavite, found in Moldavia.

The words you avoid are statistics and numbers. They deal in absolutes, and

the universe is nothing more than string. Wave‐like particles entangling with

stationary particles…and then, anything is possible, at least at the sub‐atomic level. But isn’t that where cancer starts? 3

There are one‐hundred and twenty varieties of brain tumours. Brain cancer

is the third leading cause of cancer death. If you live in Australia, Melanoma is

the number one cause of cancer death. Over 190,000 people will be diagnosed

with brain tumours in the United States in 2006. One‐third of the female

population of New York State is diagnosed with cancer each year. It’s good to avoid this kind of language. Better to use the more fluid language of creativity.

We are not diagnosed with a deadly disease, we are merely interrupted, as

if in the middle of an engaging phone conversation, and then, a child tugs at the

hem of your blouse to ask an absurd question that has no answer; the question is

being asked purely to distract you from the current call so you may pay more

attention to the child. That is it. That is cancer.

You don’t believe my words, my language? Maybe you don’t want to

believe. Belief can be suspended to let truth peek in under your skull and into your gray matter, the surgical saw still buzzing in your ear. Why? No, no—it’s why not.

A Prologue, Written in Eight and Eight2

When I first conceived of this research, my heart grew heavy. I knew the work

would be sad, even devastating at times, and it has been. But what seemed more

important was getting the truth out there. At times, I felt a bit like the obsessed

character of Fox Mulder played by David Duchovny from the television series,

X‐Files, who would do just about anything for the truth—even to his own

detriment.

Truth is such an interesting concept in our postmodern world. Everyone has

their own. It’s all about perspective. And so, when I started writing, I wasn’t

really looking for the truth, I was looking for validation of my own perspective,

my own truth. I discovered, to my surprise, much, much more.

Each chapter contains the story of an individual woman with a cancer

experience. All of the women interviewed are connected to my life. I met Sue through her sister, Amy, who was my physical therapist as I relearned how to walk again after my 2001 recurrence of a brain tumour. I know Maxene from my

life in Boston, where I grew up. I know Joan through our children. Teri was my

son’s guidance counselor in grade nine. Stephanie’s mom, Linda Lagree,

introduced me to her daughter after we worked together on a community service

initiative at Rochester Institute of Technology (RIT). Jacquie is a friend I met

through my husband, and so is Alanna. Kathryn is a connection through my

dear friend, Christine Arnold. Marina found me through a mutual friend, Mila.

Ivy was my great‐aunt—the first woman I knew with cancer. And Judy was an

2 From Shakespeare’s A Midsummer Night’s Dream; the character of Nick Bottom awakes from what he thinks was a dream and expresses that he would like Peter Quince to write the dream for him in a prologue…. 5

acquaintance through friends made when my son, Gary, was in pre‐school; after

a decade of being acquainted, Judy and I finally got to know each other better—

thanks to this project.

Throughout the chapters, as each woman’s story unfolds, so does mine.

Small threads of my sixteen‐year journey with cancer are woven throughout, coming to completion in the final chapter—my truth.

Some of the women were open and honest, some were not. It was my job to

try and get each woman to comfortably open her life to my pen. It was not as easy I thought it would be. With each interview, I felt more and more like a

voyeur, an interloper, someone who shouldn’t be there. The solution came

naturally with the growing friendship that developed with each woman. One

cannot simply set out to write about real people’s lives and not plan on getting

involved, especially when we all share a common experience, our cancer.

It should be noted, too, that more than the eleven represented volunteered

their stories. However, while every woman interviewed felt better for having

had the opportunity to tell her story—to be able to organise her thoughts on an

experience that in most cases, spanned years and years of time—not every

woman wanted the unknown masses to read about it.

The seeds for this book began when a reporter for RIT University News did a

story on me after my recovery from the 2001 brain tumour recurrence. That

reporter’s story picked up the interest of the local newspaper in Rochester in

2003, the Democrat and Chronicle. The reporter for the Democrat and Chronicle,

Chris Swingle, sat patiently and asked me questions. I didn’t quite know what to

expect from the experience. I thought the article would be a few brief

paragraphs, barely noticeable. I was quite shocked to see my story take up most 6

of the Living section in the paper with a foreword on the front page of the

Sunday edition. Every person in the three surrounding counties around

Rochester had access to the story—that equals something close to half of a

million individuals. This realization made me quite queasy, uncomfortable even,

but those feelings subsided when I began to receive the letters.

Letters, from people all over western New York started pouring in. People felt a connection to the story. Some had experience with cancer and some didn’t.

I realised that my particular story was not important. The important thing was the connection to other people, the awareness that the story raised and the

closeness it then provided.

Shortly after the newspaper article appeared in October 2003, I published a short essay in the Rochester Review. Molded by an unyielding editor at the local magazine, the piece became an ode to my husband, Bob. This was not my full intent for the piece, but I was happy to have Bob’s contributions to our cancer experience recognised. The Rochester Review is the magazine for the University of

Rochester and is sent to all alumni, of which I am one. And so was the assistant editor at Redbook magazine, who picked up the essay for the August 2004 issue. I went from having about half a million people read my story to possibly tens of millions of people reading the details of my experience. The details are not pretty and neither am I in light of some of my actions urged on by my cancer experiences. I use the plural, “experiences,” because I’m a three‐time cancer survivor, as indicated in 750 Words About Cancer. But I found my experiences to only be valuable when it helped others. If I expose my experiences and the emotions those experiences rendered, then perhaps others may feel free to do the same—maybe not to millions of people, but with the same therapeutic effect. It all boils down to the one thing every human being craves: Acknowledgement. 7

When a person, any person, is diagnosed with cancer, it is going to change that person’s life forever. Maybe that person will survive with luck, good medical care and family support; and maybe that person will not. Either way, anyone who goes through a cancer experience has gained survival skills and insights beyond what anything but that experience can teach. You can read about. You can even imagine that you relate to it. But you can never truly understand what a cancer diagnosis means to an individual’s life unless you’ve lived it yourself. I’ve lived it, three times over. And I’m thirty‐five as I write this.

Most people have had experience with cancer, if not directly, then through a relative or friend. According to the American Cancer Society, approximately one‐third of the female population in the United States is diagnosed with cancer each year.

Our population continues to grow, but that doesn’t seem to make the odds any better. And though cancer‐related deaths have decreased in recent years, it is only because of the improved medical technology, not because fewer people are being diagnosed. So, it seems that there is a need, a great need, to understand as much as possible about the cancer experience: what it means to be a cancer patient, what cancer means to that patient’s family and friends, how life goes on while living with the disease—what cancer means to the individual’s work, relationships, and quality of life, and finally, what it means to live with cancer‐related death.

Acknowledgement.

My intent for this research is to show a brief window into the lives of women

with cancer, to see the nuances of the condition, the pain, the suffering, the joy, 8

the fear, the anger, the denial, the humiliation, the shame, the guilt, and the fevered desperation. Oftentimes, survivors will speak of how they are better people for going through something like cancer, and in a sense, that can be true.

There is nothing quite like facing mortality to bring about transformations of consciousness. However, I’m not sure I would make that claim myself.

The titanium mesh plate in my skull speaks of a raging Staph infection

that almost killed me. The brace on my left leg and the walker I use for mobility

both tell the story of the paralysis sustained after surgery to remove a second

brain tumour. My Diabetes is a babbling brook of experience after having two

surgeries in quick succession (in fall 2001) and, therefore, two mega‐doses of the

steroid, Decadron, which can have the effect of Diabetes on people who are

predisposed. My third cancer experience, Melanoma, also speaks of that same

period in 2001, when the steroids not only induced Diabetes, but also darkened

existing moles and created new ones—several of which were discovered to be

the deadly skin cancer. All of the above health issues will haunt me for the rest

of my life, and that does not include the shadow cast by the brain cancer itself.

The last tumour, an Anaplastic Oligodendroglioma, is equivalent to a stage three

cancer. That’s three out of four stages, because the fourth stage is the last.

Aggressive in nature and prone to recurrence. And interestingly enough, the last

brain cancer recurrence was probably a result of radiation treatments received

for the first diagnosis in 1991. In a recent study3 on metastasized Leukemia to

the brain, it was shown that after treating the metastases with radiation, ten to fifteen years later those same patients were diagnosed with primary brain cancer

in the area of the brain where the radiation was focused. My first brain cancer diagnosis was a tumour called an Astrocytoma, Latin for “star tumour” because

3 Available at the American Cancer Society; See acs.org 9

of its star‐like tentacles that worm their way into your brain. It’s similar to what

John Travolta’s character had in the film, Phenomenon, only without the special

powers. An Astrocytoma forms in different cells than an Oligodendroglioma—

the two are not related, except that my Oligodendroglioma began to grow from

the same location as the Astrocytoma, the tumour I received radiation for in 1991.

Of course, all these problems are only a part of my story, a fraction of the total

picture of a cancer experience.

Psychologically speaking, I was a wreck for a long time. So caught up with fear at the possibility of a recurrence, that I went straight into an enormous amount of debt in an effort to plan for a future I may not be a part of. A literary irony, like that of tragic Oedipus, moving straight toward the thing I wanted to avoid. My personality is Type‐A, which, molded by my cancer experiences, made me more focused—rhetoric for unbending and hard to deal with. This was not too much of a problem as a writing professor, but it has certainly affected my relationship with colleagues, neighbors, and even family. For years after my recurrence, I couldn’t go more than a day without some kind of verbal altercation with an individual. The problem was that I had become a fighter. Everyday I had to fight to live, and once the immediate danger of the cancer had passed, I couldn’t stop.

Am I better for having had cancer? It’s a question I cannot really answer, but

I am a better person for having known the women in this book. Cancer might

force you to adapt for survival, but under the shadow of death, a person can

discover the meaning of life. And that is how I feel. I get it now. Though I still

fall into the habit of taking things for granted, I only need to take a step to be

reminded of what I have, and what I don’t. I learned to not ask why, but why 10 not. I learned that death does not stop an unstoppable spirit, like that of

Stephanie, Ivy or Judy. I learned to be courageous, even when I don’t have to be. Marina’s Story

“The doctors think that I’m stupid or something. I studied chemical engineering. I know what radiation does—the northeastern region of my country was affected by nuclear radiation after Chernobyl. I know what poisons

are in chemotherapy...such a word, chemo‐therapy! The doctors think that by

putting the suffix “therapy” in the word that it fools us into thinking it’s a good

thing!”

Marina speaks passionately about her treatment options after learning in

February 2005 that her brain tumour, something a local doctor had diagnosed in

2003 as “no big deal” because it appeared benign on the scans, was discovered to

not only be malignant, but the highest level of malignancy, a Glioblastoma.

That’s like getting a do‐not‐pass‐go card in Monopoly, except that having a brain

tumour is no game.

Marina came to the United States fifteen years ago with her young son, daughter and husband. The family lived in Ukraine, a country dogged by political strife for centuries. Ukraine is strategically located at the crossroads of

Europe and Asia and is the second largest country in Europe. Its fertile plains,

Crimean coast and Carpathian Mountains have always drawn the eye of political powers in both Europe and Asia. After World War I, Ukraine was again torn by politics. Two‐hundred thousand Jews were killed in pogroms there in 1922.

Marina and her husband, Leonid, are Jewish. Though Ukraine became independent after the fall of Soviet Russia in 1991, life there was almost unbearable for Marina and her family. A friend helped her to enter a lottery for a

U.S. visa. Marina won. She and her family settled in Rochester, New York. 12

Marina, educated at a Ukrainian university, came to the United States with a

degree in chemical engineering. Her husband, Leonid, also has an engineering degree. Marina was unable to get a job as an engineer, not because she lacked the qualifications but because she had a thick Ukrainian accent—potential employers would say that she was not a good fit because of the high level of verbal communication skills needed. Marina always thought this was ironic, being able to speak six different languages and not having a high level of verbal

communication skills. However, her husband, who also has an accent, was able to get an engineering position with the home‐grown company, Kodak. Not one to sit around and wait for favors, Marina began to research jobs that wouldn’t judge her for her gender or her accent. She went to school for aesthetic training and began working in the field at high‐end salons as a nail technician, where it seemed to Marina that her accent was praised as somehow exotic and she found herself accumulating more and more clients over the years.

In 2001, Marina partnered with two other women and opened her own

salon, Jolie. The name means “pretty” in French and features a full‐service salon

with a spa, offering massage and body wraps, manicures, pedicures, waxing, and

hair styling. The salon is positioned on prestigious Monroe Avenue in Rochester,

a street rich in history that runs across the city and into the eastern suburbs of

Brighton and Pittsford, where the median incomes per family range from

$100,000 to $500,000. Like any real estate, it’s about location in the beauty

industry. The salon opened and did extremely well; the three partners all

brought their loyal clients with them, and from there, positive word spread.

“It was just a few years after we opened (the salon); I thought I was

suffering from Lupus and Muscular Dystrophy—both were misdiagnosed. My

compromised mobility and the Lupus symptoms were both caused by the brain 13

tumour. When I learned of the tumour, because my doctor thought it was

benign, I decided to try and treat it with alternative medicine, you know, macrobiotic diets, meditation, and things along those lines. We researched and found an institute in the Berkshires in Massachusetts that claimed to have had positive results from diet change on all tumours, including those in the brain.”

Marina and her husband would travel six hours by car to Massachusetts and spend time and money at the institute claiming to cure cancer through diet.

Her diet became very strict, only organic foods, fruits, vegetables, very little carbohydrates, and, only unprocessed whole grains. She was also instructed to take capsules of flaxseed oil and other vitamin‐enriched supplements, as well as to decrease her intake of red meat.

“I wanted to believe in this method. It’s natural and not invasive, and I

did feel better…until I began having seizures.”

Marina began to experience seizures in late 2004. Her doctor tried to convince her to undergo a biopsy for the tumour, but Marina refused. She was being treated with seizure medications; the medications provided only minimal help for the seizures and began to cause other complications, like weight gain and exhaustion.

“I was so tired all the time; it was impossible, impossible, to keep up with work and family. I felt worse and worse from the drugs. I knew I had to do something…soon.”

Marina decided to consult with others in the local brain tumour community

about treatment options, and that is how she and I met. I received a phone call one evening and heard a soft yet strong voice on the other end, a voice 14

interspersed with a familiar accent, like that of some of my older paternal family

members. Marina knew that I was a brain tumour activist, someone who raised

awareness and researched clinical trials and better treatment centers for western

New York brain tumour patients. Our conversation was long, but at the end,

Marina decided to at least get a consultation at the Brigham and Women’s

Hospital in Boston, Massachusetts—a place where a collective brain tumour

research group comprised of doctors from Harvard, Massachusetts General, Beth

Israel, and Brigham and Women’s hospitals gather every Friday to consult with

brain tumour patients from all over the world. I even referred Marina to my own

neurosurgeon, Peter MacLaren Black, at the time the chief of neurosurgery at

both Brigham and Women’s and Children’s Hospitals in Boston.

Dr. Black was able to help Marina. After viewing her scans, he and his

team performed neurosurgery in an MRI unit designed specifically for brain tumour patients to help surgeons locate the exact affected areas to avoid removing unaffected, normal tissue areas. This is particularly important when

dealing with brain tumours as the tumour is almost always located in sensitive, sometimes eloquent, areas of the brain. If a surgeon were to take even a

centimeter too much, a patient could suffer any number of permanent side‐ effects, depending on the location of the tumour. Marina’s tumour had had two

years to grow while she attempted to treat it with alternative medicine. Though

she thought the tumour was benign, it wasn’t. Benign tumours may also grow,

like malignant, or cancerous, tumours. The difference is that a malignant tumour

can spread. A benign tumour will generally stay in one area of the brain.

Marina knew that a surgery would mean compromising her life in perhaps irreparable ways. Unlike other cancers, because a brain tumour is situated in an area that controls every part of the body, removal of a tumour can 15

cause impairments to memory, mobility, large and small motor functions, and

more. Oftentimes a brain tumour patient can experience a personality change

after surgery. Though such change is usually temporary and may disappear

after swelling in the brain is reduced, the change may also be permanent.

At this moment in time, Marina is still unaware of the exact nature of her

tumour. She elected to not know by not asking. Her husband, Leonid, however,

did:

“Dr. Black said the tumour was very large, so very difficult to remove

completely. He feels he got at least 95% of it. After the pathology came back, Dr.

Black told me that the tumour was not benign, but a Glioblastoma—a very

aggressive tumour. At first, I didn’t know what this meant, but then he

explained. Since Marina did not ask, we didn’t tell her. She has never asked

since, but she must know the tumour is not benign because of Dr. Black’s

recommendation to continue treatments with chemotherapy and radiation.”

A Glioblastoma is one of the most serious brain tumour diagnoses to date.

There are over 120 varieties of brain tumours; brain tumours are listed as the

third leading cause of cancer‐related death in the United States. One‐hundred

and ninety‐thousand Americans are diagnosed with brain tumours each year.4

Marina was not alone. Her Glioblastoma is a difficult diagnosis as it means the final stage of brain cancer: the stage where the cancer has become so pervasive, treatment will not do much good for very long, if at all. Still, I have met others also treated for a Glioblastoma who have survived eight years after diagnosis, a respectable window of time in the cancer community. But how is this possible?

A positive attitude really seems to make a difference, but how is that possible?

4 See the National Brain Tumour Foundation website, nbtf.org 16

The mind‐body connection is being vigorously explored on all medical fronts

today. There is strong evidence to suggest that perhaps laughter is truly the best

medicine.

New findings from the New England Journal of Medicine5 show a very real

connection between negative emotions and heart attacks. It’s called Broken

Heart Syndrome and doesn’t just manifest in people who have broken hearts

from lost love, but indicates that serious emotional stress on any negative front

leads to irregular heart rhythms that can cause a heart attack. The study shows

that those individuals with relatively low stress who reported feeling mostly

happy and satisfied with their lives had a more regular heart beat; those individuals with high stress, reporting life difficulties such as depression, had a much less regular heart beat, a sign of possible heart trouble. A 2006 article released in the Journal of Neuroscience6 suggests that when we are happy and laugh, the sound activates an area of the brain in the premotor cortical region, and that it does the same for others who hear our laughter as well. Basically,

both articles show how emotional happiness and less stress are imperative to

good health; when a person suffers from depression, negative emotions and high

stress, that person is more likely to have physical problems, including an increased risk of heart attack and possibly other medical conditions, like cancer.

Of course, if a person maintains a positive attitude and feels happiness, the opposite can be true.

Marina is no different from anyone else. Before her brain tumour was first found in 2003, her family had suffered a number of difficulties, all of which added heartache to Marina’s life, leaving little room for laughter. Her husband

5 See msnbc.com for more information; report made by Ann Curry on Today, Thursday, January 26, 2006. 6 See the Journal of Neuroscience, 12 December 2006. 17

had lost his job at Kodak. Though her salon was doing well, it wasn’t bringing in

much profit. Marina’s family relied on Leonid’s job for not only half of their

income but also for health insurance. The loss of Leonid’s job meant that Marina,

who was self‐employed and had no health insurance, had to then pay for health

insurance, something the family could not afford to absorb with only half of their

previous income.

In the Rochester area, small business owners may purchase health insurance

for themselves and their families. There are multiple health insurance providers

to choose from with a variety of packages that also fluctuate in price, depending

on the package chosen. A typical family of four can purchase health insurance

from Blue Cross‐Blue Shield7 at an estimated rate of approximately $600 to

$1,000 per month, depending on the specific insurance package purchased.

That’s an annual rate of anywhere from over $7,000 per year to $12,000 per year.

And that doesn’t include dental insurance. Marina was feeling the squeeze both

financially, as well as personally. Her college‐aged son had returned home after

failing his first year, shortly after Leonid lost his job at Kodak.

“It was like everything happened at once. I didn’t know what to do or where to turn. We had some savings, but not enough to get us through more than a few months. The salon wasn’t really showing a profit. My two partners and I were only taking home our tips to live on, the rest went back into the salon.

The rent is so high where we are—and I was working everyday, long days. I felt

like I didn’t have the time to take care of myself….”

7 The insurance estimate is an approximation provided by Benecare, a local insurance umbrella for small business associations in Rochester. 18

Marina’s frustrations were apparent. She was being pulled in multiple

directions, as we all are in twenty‐first century society, but Marina was about to

be pulled in yet another direction, a direction that would change her life forever.

“My son, I was so angry at him! He did nothing, nothing! I asked him why

and he had no answers for me. He then told me he wanted to go to into the

army—can you believe this kid? We (Americans) were fighting in Iraq, and he

wanted to sign up for the army?!?! I fought and fought and fought, and finally, I

told him to do it. I didn’t want him to sign up, but I was exhausted. I wasn’t

moving well from what we thought was Muscular Dystrophy and I was having headaches and getting rashes, which we thought was from the Lupus. I was

seeing so many doctors, we had no insurance, (and) the bills were piling up.

Leonid was not having luck finding a job. We were contemplating selling our

home. It was just too much, and then, we got the news about the tumour.”

There is a cliché phrase commonly used in American speech: “When it rains,

it pours.” This is what Marina was facing, a torrent of uncontrollable forces

beating relentlessly at her from all directions. It was as if the tumour diagnosis was something Marina just couldn’t deal with in a real way until things became

physically unbearable two years later. During those two years, her son had not

yet returned to college and Leonid had not yet found new employment. Marina,

however, had begun to have seizures.

“I didn’t know what was happening. I’d get these horrible pains in my head

and then things would go black. Sometimes I’d begin to shake

uncontrollably…it was awful.”

Though Marina was taking medication to control the seizures, there was no real relief from her suffering. Her doctor pleaded with her to at least let him 19

biopsy her tumour, but she refused. She finally elected to have surgery at

Brigham and Women’s Hospital in February 2005. This would be the beginning

of a new world for Marina and her family. Radiation would follow surgery then

twelve long months of chemotherapy. Luckily, Marina’s chemotherapy

treatments would be based on a newly approved drug called Temedor, a pill

taken five times each month for twelve months. Temedor is proven just as

effective as more traditional chemotherapy drugs, but much less toxic. Temedor

does not cause hair loss and does not have a severe affect on white‐blood cells.

The more traditional chemotherapy was typically taken for six cycles or the

equivalent of nine months; though a shorter period of time, the more traditional

drugs would devastate a person’s immune system and because of their high

neuro‐toxicity, could affect balance, memory and other necessary bodily

functions. Hair loss was also typical with more traditional chemotherapy. I

know, because I suffered all these things.

My run with chemotherapy for brain cancer in 2001–2002 was the full nine months, but I wasn’t able to complete six full cycles. After my fourth treatment,

my blood counts were so low that I needed nine different blood transfusions or I

would have died. I also became highly allergic to one of the three drugs given in

the combination called Procarbozine; this drug would be discontinued in the

fifth cycle because of my allergy. After the fifth cycle, one of the two remaining

drugs, Vincristine, would also cause physiological problems and be

discontinued. By the time I reached the sixth cycle, I could barely walk. I was

unable to digest much more than two cups of Cheerios each day. I had also lost

ninety pounds. My hair had thinned from the chemotherapy, but blessed with

extremely thick hair, I managed to keep about twenty‐five percent of it. I

thought Marina was lucky to have been prescribed Temedor; it was just four 20

years after my recurrence in 2001, and the medical community had already

advanced their treatment of brain tumours.

Somehow, this sense of joy and relief for Marina seemed perverse. How is it

that joy and relief can be found in something as toxic as chemotherapy? Cancer

twists life out of shape so that your perspective becomes skewed, something

strangely strangled and tangled. Marina would feel something similar as she

embarked on her radiation treatments in Rochester. A man named Dr. Okunieff

would treat her. He wanted to treat me, too—but after an initial consultation, I

refused to be treated by him.

“He was so mechanical, like I was a machine, and sometimes I even felt like I

wasn’t in the room when he would talk. He would speak into this little black

tape recorder and call me a “subject.” It made me angry but what could I do?

Dr. Black recommended radiation and I couldn’t get the radiation in Boston—we

couldn’t afford to stay there for that long.”

Marina’s younger daughter, just beginning middle school, needed her

mother close to home, though she was dealing with the situation very well, according to both Marina and Leonid. A family friend, Mila, also from the

Ukraine and one of Marina’s business partners, felt similarly:

“Marina’s daughter acts so normal—I think, what is wrong with this child?

Why (is) she not affected by all this going on with her mama? It’s strange, no?”

Mila said in an informal interview in the salon.

I have known Mila for fourteen years. We have become good friends over

that time. We both have children the same age. It was Mila who suggested

Marina contact me for advice on brain tumours. When I was going through my 21 chemotherapy treatments from December 2001 through August 2002, though too sick to eat and unable to walk, I would faithfully go to Mila at the salon for paraffin treatments. I had little hair to style and was bloated from steroids. I hadn’t the energy or strength to even apply make‐up, but no matter what, I had to have my monthly paraffin treatments at the salon. It was one of the only threads of normalcy I could hang on to. Mila would generously meet me at the salon during off hours, when I didn’t have to see others, and they didn’t have to see me. Because of the chemotherapy, my skin was extremely sensitive and the waxing was incredibly painful, but I didn’t care. My will to continue in as normal a fashion as possible over‐rode my pain and discomfort. When I think of it now, I recognise how remarkable that was. I was not a perky patient—I wasn’t depressed, but I was, well, rather surly. I felt angry at the situation, and that anger is partly what pushed me to trudge to the salon in my wheelchair, after throwing up all night, feeling so weak and tired, I wasn’t sure I could remain conscious—but none of that mattered in the face of having my “normal” waxing.

Part of being accepted as a woman in current society is to have all sorts of hair on your head, but not to have hair anywhere else. I would have my underarms, legs and bikini area waxed every month, as I had been doing my entire adult life. No one was going to see those areas of my body—I didn’t need to be waxed. I wasn’t even looking! But it just didn’t matter. It was a part of my normal routine, something I always did, and always will, as long as I’m alive—and that was, and still is, strangely reassuring.

Marina, though, suffered permanent hair loss from the radiation treatments.

Because the treatments were relatively focused in the area where the tumour was, she still has hair, just not on about half of her head. She typically styles her blonde hair brushed to the side, and artfully places a beret or some other hat or 22 scarf on her head. With her extremely blue eyes, pale, clear complexion and blonde hair peaking out, Marina is stunning. She pays close attention to fashion and wears some of the most beautiful clothing I’ve ever seen. The day we met, she wore black leather boots that reached just below her knee, which was gently swept by the sway of her askew hemline from a richly embroidered black leather skirt. Her sweater was also black and obviously cashmere, two‐ply from the look of the intricate cabling along the front and sleeves. She wore make‐up and had distinctive red lipstick on that perfectly matched the red paint on her well‐ manicured nails. She moved in graceful, long gestures, her head slightly tilting in positive acknowledgement to questions, her arms and hands waving in a flowing motion at the same time. Her movements, if set to the right music, would have been considered ballet‐like. Her eyes, though a bright, clear blue, had the same expression that my eyes had during my acute periods of illness.

She was animated and talking but her eyes looked dead, open, yet dead. It was something about the expression, unchanged with no dilation, just gazing out plainly as if there was nothing new to see, or ever would be again. When I look back at pictures of myself during my 2001 recurrence, pictures I didn’t want taken, I see that same expression. It haunted me for a while; I grieved about it, and sometimes still do. To know the depths of such darkness that you feel there is nothing left to see is one of the most terrible pieces of human knowledge in our limited existence. Marina had found that dark place, too, and I grieve for her, even now.

*****

Marina began to work again after she completed her radiation treatments.

She felt well enough to go out and even take on a few of her more loyal clients. 23

The day I met her for her interview, she was at work in the salon. I watched her

sit at the manicure desk from the reception area. The gas fireplace was alight. I

could feel the heat, and noticed the reflection of the flames in the highly polished

hardwood floors. Marina meticulously worked as her client, a chattering woman

dressed in sweat clothes, sat mindlessly jabbering, unaware of how difficult it

was for Marina to focus on her work with all the noise. Marina’s eyes were

squinting. She was biting the corner of her lip as she tried to maneuver the

woman’s hand to expose the unfinished parts of the claw‐like nails hanging out

from the ends of the wrinkled‐skinned fingers; she expertly moved to and fro, all

the while nodding, smiling and filing. When she finished with her client, we

talked:

“I don’t know what to say, Rebecca, I am tired, I am sad. I’m not depressed,

but I sometimes can be. I’m taking medication to help with that, and so is

Leonid. My son is working, finally. He is taking classes at the community college and seems to be happy. I still worry, but what can I do? All I can do is what I can fit in the space of each day. I can’t worry about anyone anymore but myself. My daughter is fine. She is very…,” and Marina paused here, perhaps to find the English word she was looking for, or, perhaps struggling to speak the reality out loud, “…adaptable. Leonid is doing his best, but it’s a struggle. He’s home, I’m working. It’s like everything is backwards—like we are looking at a mirror of our lives and not our real lives at all. I don’t know if I’m explaining it right, but it just feels strange everyday.”

Marina worries that she’ll never feel “normal” again, and she may not.

Normal shifts in the face of cancer. The sense of freedom, that sense we all seem

to feel entitled to as if each of us were granted one‐hundred years on earth, is lost

after a cancer experience. I long for that same sense of freedom which has now 24

been lost. Though, I refuse to believe in my ever‐hopeful, somewhat naïve pose

that I will not somehow earn that freedom back—as if it is a thing that can be

earned, or bartered. I told Marina about the mind‐body connection and the findings over the last thirty years of research in psycho‐oncology. Here was her

response:

“I believe it is true. You can live forever if you believe in it. If you don’t, then you die. I know that I’ll die someday. I was worried my whole life that I

would die like my mother did when I was only ten, before my own daughter

turned eleven. Well, I didn’t. I’m still here, and God willing, I’ll still be here

when my grand‐daughter turns ten, too. It’s hard to be so hopeful and

sometimes I get mad thinking such ridiculous things, but then I remember that

it’s not ridiculous if I believe it. I can believe whatever I want, and I do.”

*****

Marina’s decision to not learn of her diagnosis beyond the simple fact of it being a brain tumour reminds me of a cartoon character, Wyle E. Coyote, a creation of Mel Blanc and Warner Brothers. Wyle E. Coyote was always chasing after the Road Runner, and sometimes in his mad‐pursuit, he’d run right off a cliff! But he didn’t fall when he ran off the cartoon cliff; he would continue running in pursuit of the Road Runner, as if he were running on solid ground.

The only time he would fall was when, upon looking down, he realise he was walking on air.

Can it be the same thing for us, too? If we refuse to recognise the prescribed

reality, prescribed by mathematical statistics and science, then can we keep 25 running as long as we don’t look down? There is more and more evidence lending positive credit to the idea. And Marina is no exception.

Almost eighteen months after her 2005 surgery, Marina is doing exceptionally well. She completed her chemotherapy and her most recent MRI scan shows no growth.

“It is what it is. I am happy I am here.”

Sue’s Story

Before Sue’s story begins, it should be noted that Sue’s chapter is unlike any other because both Sue and her family generously allowed me in to their lives for an extended period of two years, from 2004 to 2006. From August 2006 Sue was unable to see visitors beyond immediate family, when the cancer grew relentlessly and Sue agreed to begin yet another new course of chemotherapy for the third time in two years. And now, Sue’s story begins:

In April 2004, I met with Sue to interview her for this book. Sue and I were introduced by her twin sister, Amy, who had been my physical therapist in the rehabilitation hospital after my 2001 neurosurgery, an experience that left me paralysed. I had kept in touch with Amy since then, and when she heard about the book, she asked if I would interview Sue. I was only acquainted with Sue; I had seen her at a few parties at Amy’s home previous to our interviews. Sue and

Amy are identical twins and the first time I saw Sue, I thought she was Amy.

She greeted me as Amy would have greeted me, even the pitch of her voice was the same. Her movements matched Amy’s movements, so much so it was uncanny. It was only after five minutes of talking to this woman who I thought was Amy that the real Amy walked over. A bit embarrassed and determined never to make that mistake again, I spent that evening observing both Sue and

Amy, looking for the “tells,” to use a poker term, that would give me clues about their individual identities.

Sue was much quicker to smile then Amy; she didn’t think before doing it, whereas Amy would often frown before a smile, as if first having to consider carefully whatever occurred in that moment. Sue’s hair was also darker, still 27

strawberry blonde but more strawberry, and it was also less frizzy. I noticed that her frame was less muscular and her skin had less freckling. These differences were all due to exterior influences. Amy, an avid runner, was always outside, which explained the differences in hair texture and skin tone. Being a marathon runner and tri‐athlete, Amy had developed a muscular frame while Sue was clearly not an athlete with her slender arms and legs. Their personalities were different, too. Both sisters shared many sensibilities, like generosity and kindness, but Amy was more of a worrier. Sue just had this air about her. She seemed…fearless. It was something about her easy smile that gave it away, like she knew that life was fleeting and wanted to take in every ounce of joy she possibly could. Amy was more serious. Concern ruled her world, evidenced by the prevalent worry lines across her forehead, a trait Sue had not developed.

And once I began to interview these twin sisters, I learned why the two differed

in these ways.

Sue’s Brush with Death

It was fall 1997. Sue, and then fiancé, Scott, were visiting Amy who was living in San Diego at the time. The sun was always in the cerulean sky over the

west coast city. San Diego was like a different world compared to Rochester,

New York, where Sue lived. The vegetation was lush and green with palm trees

lining the streets. Houses were on postage‐stamp‐sized lots, a big difference

from Rochester, where most homes are built on at least half of an acre of land.

And the biggest difference of all, the glimmer of azure that was the Pacific Ocean

was no more than a short car‐ride from Amy’s home in San Diego. In Rochester,

the closest ocean is at least 500 miles away. Rochester boasts being near Lake 28

Ontario, but as someone who grew up in and around the Atlantic Ocean (of Cape

Cod, Massachusetts), Lake Ontario is not much more than a land‐locked and murky green wash, with a rather unpleasant odor, too.

During the San Diego visit, Amy had taken Sue and Scott to the beach, to

Sea World, and to tour La Jolla, which means “the jewel” in Spanish—a part of

San Diego that lives up to its name with sprawling multi‐million‐dollar beachside manses that equal the expanse of approximately twenty average houses in the San Diego neighborhood of Coronado, where Amy lived. The entire time that Sue and Scott were enjoying the sun and fun of southern

California, Sue felt this nagging pain in her right side. It wasn’t so bad that she felt she should cut the trip short, but it concerned Sue, a nurse by trade, that it was a consistent pain that had not yet dissipated over the course of the week‐ long trip. During our interview, Sue admitted that she had the same pain before leaving for San Diego, but desperately missed her sister and felt the trip was too important to put off.

Upon her return from San Diego, Sue made an appointment to see her

internist about the pain. She had an ultrasound that day. This would be a

moment which would shape and define Sue’s life. There was a mass on her

ovary. The doctor wanted to perform surgery to remove it and run a pathology

test because, though the doctor wasn’t certain the mass was cancer, Sue was told

it was a good possibility.

Cancer. The word itself brings fear into the hearts and minds of countless

individuals who have had previous experience with it. To those who haven’t,

the general thought is that after a stretch of various treatments, a person goes

into remission—a word that many believe means ‘cure’. However, there is no 29 cure for any cancer. Cancer comes back. It’s implied in its very nature. Mutated, malignant, metastasis, mass, these are all words associated with cancer and none of them sound particularly hopeful. Ovarian cancer, the diagnosis Sue was facing, is the fifth‐leading cause of cancer death in women 35‐74 in the United

States8. One out of every 58 women will develop ovarian cancer in their lifetime.

The American Cancer Society estimates that in the year 2006, over 20,000 women will be newly diagnosed with ovarian cancer. Over 15,000 women will die in

2006 of ovarian cancer. The statistics in 1997 were similar. Sue was terrified:

“I called Scott at work and told him about the test. He came right home. I just wept in his arms, afraid of what the future might hold, but more afraid that there might not be a future. I had been married to my college sweetheart. Our marriage had ended about eight months before my diagnosis. The marriage was not an easy one. Things spiraled downward quickly after we got married. I wanted children. He didn’t. At some point, he stopped having sex with me. I would cry and cry and cry trying to cope with the pain of rejection, rejection from the person I loved most in the world. It was so bad, I almost thought that he was gay; I just couldn’t imagine how he could go from wanting me, to not wanting me. My deep sadness occupied the last five years of our marriage until the divorce. Meeting Scott was such a Godsend; he was so kind and generous.

He has a tremendous heart. He stuck with me, despite the diagnosis. We even got married while I was in the hospital on chemotherapy! I had an IV stuck in my arm with a pole and several bags of fluid trailing behind me and no hair whatsoever, but we got married!”

After an initial surgery, the diagnosis was stage II ovarian cancer. Most cancers are part of what is called a staging system that determines the level of

8 From the National Ovarian Cancer Coalition, see www.ovarian.org 30

malignancy. Stage II is considered a low‐level cancer, but Sue’s low‐level cancer

was stubborn:

“I was so disheartened. After nine months of chemotherapy, the cancer

was still present. My doctor recommended I do another six cycles, or nine

months, of chemo. My hair had just started growing back. I was looking

forward to starting my life with Scott, though we were already married, I wanted

some time with him outside of hospitals, and preferably, with a full head of hair

again. Being a nurse made the whole thing worse because I knew that after all

that chemo, some really toxic stuff, the cancer was still resistant—meaning, the malignancy was worse than expected, though the tests never confirmed this.”

Still, Sue and Scott remained positive as they faced another nine months of

chemotherapy. Scott shaved his head to match Sue and the two made various

plans for travel for after Sue completed her treatments and got back on the road

to good health.

“I couldn’t wait to get back to life after I finished everything. My hair

grew back and I started to regain my lost energy. I couldn’t wait to go back to

work—so strange isn’t it? People always want to get away from it and I was

dying to go back! Even small things, like wind blowing in the grass or

accidentally burning my tongue on hot food, meant something (to me).”

*****

Scott also agreed to an interview during the summer of 2004. He told me

about the first time he met Sue. He was a patient of the orthopedic doctor she

worked for. He came in with a sports injury—Scott was an avid softball player,

and still is. At the time, he was engaged to another woman and Sue was already

married, though her marriage was serendipitously soon to end, although Sue did

not know this at the time.

“Rebecca, as soon as I saw this woman, I knew. She was the person for me, my soul mate, and that was no light recognition because I was engaged. I asked Sue if she wanted to get together for coffee and she declined, showing me her wedding ring. I told her then and there that if anything ever happened, to call me. I was dead serious. It was this gut feeling, like an instinct, this woman

is who I’m supposed to be with. The rest is history. When she was diagnosed, I

felt this burning urge to marry her as soon as possible. We were already

engaged but I just didn’t want to wait—I guess I was worried that something

might happen before we got married, and I couldn’t see my life without Sue.”

Scott, a computer salesperson and technician, is a mild‐mannered guy

with an easy smile, like Sue. He is very friendly and made me feel comfortable instantly with his gentle demeanor. Scott was adopted as a child, and has strong

family values—part of what attracted him to Sue—and is something he learned

from his mother and father, who sacrificed a great deal to send Scott to college.

He grew up in Rochester in a surrounding town called Greece, a large

commercial area that is home to the famous Eastman‐Kodak factories—Scott’s

father worked in one of the factories. His mother stayed at home with the family. His parents were of Italian ancestry, hardworking people who believed strongly in education and their Catholic faith. 32

Sue was also from a Catholic family, though unlike Scott, she was raised in the country‐like setting of Elmira, New York, about 120 miles from Rochester, on

her parent’s horse farm. Her mother was a teacher and her father was a

pharmacist who owned the local shop in town. Sue went to college in Buffalo,

New York, about a three‐hour drive from her home in Elmira, and got a job after

graduation in Rochester at Strong Memorial Hospital.

As Scott continued to speak to me, remembering the trauma of Sue’s 1997

diagnosis, he began to get tears in his eyes. He didn’t turn away from me when

this happened and I was surprised. He just smiled and said, “It still hurts, you

know?” with a shrug and continued to tell me what was on his mind as I handed

him a tissue:

“I (felt) completely devastated…my heart felt like it stopped (when Sue

told me about the cancer). I couldn’t breathe…I…went through a whole realm of

emotions—anger, frustration, pity, sadness—both for me and for Sue. I thought

(that) her diagnosis was a death sentence. But now, things are so much better—

the future looks great! I’m looking forward to taking our next step in life

together…we’re adopting a little girl this year. Sue will be the best mom in the

world,” Scott said, his voice trailing but not before adding, “Yeah, I trust Sue.

She knows her body.”

Sue had wanted to adopt a child when she finished her final chemo

treatments in 1999. Scott did not. Though Sue was clearly the love of Scott’s life,

Scott was afraid of the cancer’s return. After watching his wife struggle through

eighteen months of chemotherapy from 1997‐1999, he knew that if the cancer

returned, treatment would be that much more difficult to tolerate. Sue, on the

other hand, was desperate to achieve her dream of motherhood, a dream she had 33

since her first marriage. A dream she thought had vanished when she was diagnosed with ovarian cancer. But Sue survived, and after surviving her ordeal, she wanted to live life to the fullest, and to Sue, that meant becoming a mother:

“I was so frustrated, so frustrated. I was to the point where I was going to

put in the adoption application myself, regardless of what Scott wanted.

Thankfully, we put in our application in 2003 to adopt from China. It takes so

long to process though. We hope to hear news about the baby by fall. We have

to spend two weeks in China before we can take her home. She’ll be at least one‐

year old by the time we get her. But I don’t care at all about that. I just want to

be a mom and there’s a little girl in China who needs a mom, so it’s perfect.”

Scott ultimately agreed to the adoption because he felt like Sue was a

strong person, his “hero.” Scott also felt that with Sue’s courage, even if the

cancer returned she would face it and win, “I’d like to think that I’d have the

same courage in a similar situation, but in my heart I don’t think I could.”

*****

In December 2004, Sue, Scott and Amy traveled tens of thousands of miles,

over twenty hours in‐flight, from the northeastern United States to China. After

a little over two weeks the three brought home Megan, Sue and Scott’s daughter.

Megan is a beautiful dark‐haired girl with large round eyes, like Scott’s. The

agency matched Megan to Scott and Sue because of this similarity. I got to meet

the new family in January 2005 and everyone was adapting well. It was hard for 34

Sue to go back to work in March 2005, after her family‐leave9 ended. She didn’t

want to put little Megan in day care. She wanted to just cling to her new baby every moment of every day because she knew how precious each moment was.

And the moments were even more precious than any of them could have

imagined.

Amy’s Thoughts on Sue’s Brush with Death

“She has beaten the odds at almost seven years cancer free!” was Amy’s response to a question about Sue’s continuing health in a late spring 2004 interview.

It was interesting to me that Amy said “seven years.” Sue was diagnosed

in fall 1997. She had treatments that took her into 1999. It was only 2004—five years later. But Amy was referring to the standard rubric for survival. A patient’s survival is measured from time of diagnosis forward, making Sue’s survival a deceptive seven years when in fact it had only been five from her last

treatment. Most cancers return within five years. With the prevalence of early

detection, certain cancers, like breast cancer, can give patients perhaps decades before the cancer comes back. This leads to a general confusion about cancer.

There is this mode of public thinking that does not see cancer as a great threat.

Watching a popular ABC news show the other evening, the reporter boasted that

most people don’t die from cancer anymore—he even went as far as to claim that

9 US Federal regulations allow all mothers, including adopted mothers to take a “maternity” leave. The time frame usually varies by company, but can be up to six weeks. Many American mothers-to-be anticipate their leave and ecru vacation time to add to their leave. There is no standard for vacation time but most companies give one to two weeks per year. 35

it was a myth—because, according to the reporter’s rationale, the number of cancer deaths have decreased in the United States. Yes, cancer‐related deaths have decreased, but it’s not because people are no longer dying from the disease.

Statistics are averages—based on selected groups—and are not necessarily

representative of reality. Treatments are improving but there is yet to be a cure.

With improved treatments people may not die as quickly; perhaps their

windows of survival have been extended—but to claim that cancer‐related death

is a myth? It would be nice, and while I do feel that medicine is approaching the

early stages of a cure that may possibly manifest in the next twenty years or so,

people still die from the disease. It’s no myth. And people, like that reporter,

make the rest of us feel we are somehow crazy to be so afraid. But it’s not crazy,

not when you’ve lived it. Not when you’re the one facing a cancer diagnosis. To

fear death from the disease as a patient, or as a family member or friend of a

patient, is a legitimate fear to have. Amy’s fears for Sue were not silly. They

were all too real.

*****

Amy said in her 2004 interview, “After Sue’s diagnosis, I would lie in bed at

night and believe I had cancer, too—I could feel it—a tumour. I wanted to have

surgery so the doctors could remove whatever necessary so this would not

happen to me…. I’ll never be comfortable with Sue’s diagnosis—(it) scares the

hell out of me….” 36

Amy had moved to Rochester after hearing of Sue’s diagnosis. She left

her life in San Diego behind, her job, her friends, her house, her lover. She gave

up her life to be with Sue and in the process, made a new life in Rochester. But

Amy recognised the affect of Sue’s diagnosis on her life:

“On some level, I don’t want to get married,” said Amy, then 40, who had

been engaged twice in the last ten years but broke off both engagements, “I want

a family, I want children, but I don’t want to lose my focus on Sue. I don’t want

to miss a moment.”

Sue Meets Cancer, Again

It was late March 2005. The new family was doing well. Sue had started

working again. She was a nurse manager for an orthopedic doctor. The job was

stressful and required Sue to coordinate staff as well as current research efforts.

This all took too much time away from her new family and Sue wasn’t entirely comfortable with this:

“I don’t mind working, but it’s just really difficult to do it all—to take care of the house, to take care of my professional responsibilities, to take care of Scott, but most importantly, to take care of Megan. She’s changing and growing everyday. I hate when I miss something that I should have been there for, you know?”

In the midst of all the newness of motherhood, Sue began to have a familiar

feeling, and not a welcome one. She felt an ache on the right side of her 37 abdomen; she recognised it right away and made an appointment with her doctor.

The cancer had returned.

By early April 2005, Sue was preparing for surgery to remove the cancerous tumour. Though her ovaries had been removed in 1997, along with all of her reproductive organs, the cancer cells from 1997 managed to somehow escape the surgery and the following eighteen months of chemotherapy. This is part of the myth of remission. “Treatment” is a means to put the cancer cells into a long sleep—radiation and chemotherapy can kill some cancer cells, but there are always a few undetectable cells that remain behind. Cancer doesn’t disappear because we marinate the cells in toxic chemicals or focus high levels of radiation on it. Cancer doesn’t go away because we want it to. It doesn’t go away for any reason. When cells mutate, they become unpredictable. There is no way to tell how a cancer cell will act. Yes, most cancer cells in most people respond to chemotherapy and radiation, but define “respond”. Does respond mean kill?

Does it mean put to sleep? As with Sue, cancer responds differently with different individuals. In my case, I have an abnormal gene—a good thing when it comes to cancer. This abnormal gene contributes to successful chemotherapy treatments—successful in this case means giving the patient periods of survival on an average of ten years before the cancer returns. And as I sit and write this, five years from my 2001 diagnosis, four years from my last chemo treatment, a stabbing headache on the right side of my head where the tumour used to live, haunts my thoughts, reminding me that it’s still out there. 38

Sue survived the April 2005 surgery with a bravery that is something usually

seen only in the movies. A new sixteen‐inch incision was made, slightly longer than the original incision from her 1997 surgery.

During one of my visits to Sue in the hospital, she showed me her new linear

scar, lifting her blue‐gray jonnie and exposing herself without hesitation: “How

many staples did you have the second time around?” Sue asked, looking right in

my eyes, almost like a challenge. I couldn’t help but feel that this act was something akin to the stereotypical scene of men in locker rooms measuring the length of their respective members, and let a giggle escape as I answered:

“Oh, well, I think it was something like twenty—you look like you’ve got me

beat, though,” I said while smiling.

Sue smiled, too.

*****

In a few weeks, Sue would be out of the hospital and resting at home. She would begin to prepare for radiation treatments, followed by several months of chemotherapy. All tests were showing good results and Sue seemed to be on the road to health, again. During this time, Sue wanted to continue our interviews, saying, “It’s another cancer experience, isn’t it? Won’t it help others who read this to know what to expect?”

I couldn’t argue.

We would meet in Sue’s home, and interview while usually sitting together on her country‐pattern maroon couch in the family room, a large stone fireplace

sitting across from us. Many of these conversations took place in the presence of 39

friends and family. Sue was never alone during this stretch. The mantle of the stone fireplace was covered in cards, balloons and flowers. Even a few stuffed bears were seated amongst the cards, sweetly peering down, cheering Sue on.

In the middle of talk about her upcoming treatments, Sue asked me if I

wanted to see her old wig, used during her stretch of illness from 1997–1999:

“Hey, do you want to see the wig and hair pieces I used…they’re really pretty.”

Her mother, Peggy Steed, a stick‐straight woman with a sober face that

resembles Sue’s, got up from her seat in the family room and about ten minutes

later, brought a flowered hatbox from the basement. She placed it next to Sue. “I

could barely find it down there. It was behind a whole bunch of junk; you

probably never thought you’d need it again.” She spoke with a mother’s sadness.

The pastel hat box matched Sue’s pajamas and I remembered thinking it was

ironic in some way, though I forget now why I thought so. Both the pajamas and

the hatbox were in striking contrast to the dark colors of the family room and

especially, the maroon couch we were sitting on.

“Check it out,” Sue said with a kind of glee that I found puzzling

considering we were looking at artifacts from her cancer past, as she pulled out a

frizz‐laden but curly wig that was more blonde than Sue’s natural strawberry‐

colored hair, though a good match overall. “What do you think?” she asked,

combing the curls with her fingers then fluffing the front bangs a bit.

“Wow, it’s beautiful—did you wear it often?” I wondered aloud, noticing the stiff under‐cap. Sue answered me quickly: 40

“No, actually. It was kinda uncomfortable. I more used these pieces,” and

Sue extracted a small hair piece that looked like blonde bangs and a longer,

curled pony‐tail hair piece, “I would use them with a baseball cap—I’d put the sweetie cap (a knit cap) underneath the baseball cap and just Velcro these…,” she said while holding up the pony‐tail hair piece in one hand, the bangs in the other, “…under the baseball cap.”

After a few minutes of chit‐chat about natural hair versus wigs, I asked Sue if

I could read her a quote from her 2004 interview:

“I remember telling (my fiancé) Scott about the appointment. It was like

someone else was speaking, the words were not mine. I was terrified, in a state of disbelief and denial. I thought, ‘This can’t be happening to me, I’m too young.

This can’t be cancer. What about all my plans? Why me? This is so unfair,’ my mind felt like a bottle top spinning out of control. I remember telling my doctor

as I signed the surgical consent form, ‘Do whatever you need to give me my life

(back).”

“Do you still feel the same way? Will you do anything recommended by the

doctor? Because, I felt like this during my first diagnosis in 1991 but that changed

the second time around. I refused radiation—which was a rather unpopular

decision among my doctors and family alike,” I asked, though very carefully.

Sue thought for a moment before answering, “You know, I think I do still

feel the same. I don’t feel as scared. I feel more confident that I can beat it,

though the things I am scared about are the things I’ve already been through.

I’m still scared of those things because I know exactly what they mean. I’m willing to do anything to live. I have a daughter now—she needs me.” 41

*****

On April 20, 2005, Sue endured her first radiation treatment. She would go on to have twenty‐nine more treatments over the next six weeks.

“As long as I don’t think about what’s going in my body, I’m okay,” says Sue

as she lifts her cotton T‐shirt to show me her new tattoos deeply embedded in

her pale, befreckled skin. Like a grotesque compass pointing to a sinister

treasure on a map, Sue had dark green tattoos inked in stark contrast with her pallid hue for the purpose of guiding the radiation, “I had to sign a paper saying

I understood that the tattooing may be permanent—I’m not happy about it, but

there’s nothing else I can do. I’m stuck.”

I had told Sue about my refusal to endure radiation treatments for a reason.

Radiation is one of those treatments used as part of the holy trinity of cancer

treatments: surgery, radiation and chemotherapy. Think about it, just for a

moment—would you ever deliberately focus radiation into your body, for any

reason? Do you know what one of the primary causes of cancer is? Radiation.

Nuclear radiation has a half‐life that lasts thousands of years. In the United

States, “underground” nuclear testing took place, as it did in many countries the

world over before, during and after World War II. Where did the nuclear

radiation go after the testing? Did it just evaporate? Unfortunately, it didn’t.

And nuclear radiation and waste are two of the leading suspects in cancer

diagnoses today. 42

The fun of radiation doesn’t stop there. For Sue, the side‐effects during treatment were minor, some itchy, dry skin, a bit of fatigue. She was able to go on to her chemotherapy treatments as planned. But it wasn’t long before radiation‐induced scar tissue began to build in her already fragile bowels.

Radiated areas of her intestine shriveled. Permanent perforations formed in her intestine and bladder. All caused by the radiation. This is beyond debate.

Sue began to get colon‐blockages that would last weeks. She was unable to process any food because of the blockages and, ultimately, was unable to eat.

During an abdominal CT scan in August 2005, a technician would aim too high and catch a glimpse of Sue’s liver, revealing undiagnosed spots of metastasis— the cancer was starting to spread. Another scan showed that there were also spots on her lungs. Sue’s cancer was elevated to a stage IV, the final stage of any cancer in the staging system because it means that the cancer has spread to other

areas of the body—when this kind of multi‐level attack occurs, it is difficult for doctors to arrest the cancer, and can eventually lead to the patient’s death. That’s why stage IV is considered the final stage.

It was now late August of 2005. Sue was spending blocks of days in the

hospital to try and get the blockages in her intestine under control. By late fall, she was ready for surgical solutions, but because the doctors were working with

radiated tissue, tissue that could not heal, there were risks. And I just kept thinking, as I listened to Sue tell me about her trials, of her words from her last interview, “I’m not happy about it—but there’s nothing else I can do. I’m stuck.”

Sue would be on weekly chemotherapy for the next nine months. This

would lead to many more stays in the hospital, often for a period of weeks at a time. Scott was doing the best he could, managing to still work full time, care for 43

Megan, the house, and Sue. He decided to begin some medication to help with depression that continued to creep in to his psyche. He couldn’t afford to get depressed now, not now, when Sue was so close to her final chemo treatment.

May 2006—Sue was released after completing her final treatment. She was

quite ill, unable to walk because of neuropathy, or numbness, caused by the chemotherapy. She was highly immune‐suppressed and was very prone to any cold or germ that she came into contact with, slowing her healing. But Sue was strong and stayed the course, working with a physical therapist and taking

Avista, a drug used for ovarian cancer patients that resembles Glivak, a drug for stomach cancer patients. Glivak and Avista keep cancer at bay—it’s an oral medication, not considered chemotherapy, but often with the same type of side‐ effects. The drugs maintain a chemical balance that prevents the “feeding” of cancer cells—it does not get rid of the cancer, but the cancer usually doesn’t grow either—usually.

By July 2006, Sue was told that the cancer was back, again. A third chemotherapy was recommended, as Sue’s cancer was resistant to the other two

she’d had over the last year. By the end of August 2006, Sue was in the hospital

again with more intestinal blockages.

Sue would remain in the hospital through January 2007, the current date as I

write this. And though I hate the thought, I’m not sure Sue will ever go home

again. Sue weighs less than eighty pounds10 now. She has had a series of

infections and abscesses that continue to plague her recovery. She is no longer eating solid food. She cannot walk, so swollen are her joints from the chemotherapy. She has not been allowed visitors since September because she is

10 Approximately 36 kilograms 44

prone to outside infection. She is not allowed to have flowers in her room because of this, too.

Sue faces a second surgery to undo the intestinal bypass performed in 2005.

Because of the perforated tissue in her bladder and intestines, Sue has permanent urostomy and colostomy bags. Remarkably, the body still produces waste, even

if there is no food entering the stomach. And, if Sue manages to make it through

this next surgery, beat the infections and abscesses, and regain enough strength

to eat and walk again, she still faces at least four more chemotherapy treatments.

Though Sue has been laid up in the hospital, the cancer, the reason for the

radiation that has riddled Sue with constant health issues, still grows. It has been

five months since Sue has had any chemotherapy. The doctors have not even

taken new scans of the liver and lungs to check. Why would they? Sue is not

well enough to attempt chemotherapy anymore.

*****

Meanwhile, life goes on. Sue’s daughter, Megan, is now three. Sue tells me that Megan asks Sue with every visit to the hospital, “Mommy, when are you

coming home?”

Scott has had to take unpaid leave from his job. In the States, federal

regulations allow for an individual to take unpaid leave for up to three months for such situations and still expect to have a job to go back to at the end of that time. Not all businesses adhere to this, but Scott has been with his company for 45

over a decade. He is good at his job and the situation is such that not even the cold heart of business can ignore Scott’s reality.

Amy, Sue’s twin, adopted a daughter from China in March 2006. When we talk, Amy often becomes teary and confides that she is nervous about Sue’s health. Amy is rightly concerned, and it seems she always was. For Amy, whenever she sees her sister, she sees herself. We all do this to some extent, relate to others by imagining ourselves in their place. Amy looks in a terrifying mirror when she sees Sue: “Part of me is scared for her and always has been.

Part of me is terrified at the thought of having to go through the same thing. I don’t want to—not that Sue wants to either. No one wants to. But I almost feel guilty that I don’t. Sue and I shared everything. We spoke on the phone everyday. When she’s sick, I know it because I feel sick, too. She’s my other half, literally. I don’t want to think the unthinkable, but what will I do…what will I do?”

My only answer comes from Sue. We interviewed in her hospital room in

March 2006. Scott and Megan were dozing, sitting in the corner chair of the

dimly lit room. It was one of the last times I saw Sue in person. Our contact has

been limited to letters and phone calls since then because of her suppressed

immune system.

“I’ll do what I have to—that’s all,” she said, glancing at her sleeping family,

a smile, something I hadn’t seen on Sue’s face for quite a long time, spreading

gently on her lips.

Stephanie’s Story

“How can God do this to me? What have I done to deserve this? And how am I going to carry this child to term through all the treatments?”

These were Stephanie’s first questions when she was diagnosed in early

January 2003. Stephanie was seventeen weeks pregnant when she was told she had breast cancer.11 Stephanie, already a mother of two children under five, was

terrified, but not of the cancer.

“I was so scared that I would have to terminate my pregnancy. That was

NOT something I was prepared to do; when I told my oncologist how I felt, I was

surprised by his answer. The doctor told me he had had patients in similar

situations, all of whom were able to carry their babies to term. When he told me

this, I knew what I had to do: I had to do everything in my power to make sure I

had a healthy baby.”

Stephanie’s self‐possession and determination would be put to the test

early on. Her diagnosis was a Stage II Infiltrating Ductal Carcinoma—a later‐

stage of malignant breast cancer. After twelve weeks of chemotherapy,

Stephanie was asked to get into an MRI machine12—at the time, she was twenty‐

nine weeks pregnant. Because of the pregnancy, Stephanie could not lie on her stomach, a requirement for the scans. Instead, she had to position herself on her

11 According to the National Cancer Institute, breast cancer can occur in pregnant women ages 32–38 at the rate of one in three-thousand pregnancies per year. See www.cancer.gov 12 An MRI or Magnetic Resonance Imaging machine is a long, closed tube that a person enters via an automatic sliding bed. When in the tube, a person must be very still—even blinking can change an image. If lying on your back, the top and sides of the surrounding tube, once in the machine, are no more than inches away. The tests can range from minutes to hours and are typically accompanied by loud knocking sounds. 47

hands and knees for over ninety minutes with an IV that fell out of her arm four

times while she was in the machine. As if the difficulties with the IV were not enough, the machine broke down during Stephanie’s exam. Stephanie was asked to remain in position while the technicians hurriedly worked to correct the

problem. Her knees hurt. Her arms were tired. She was exhausted from the

months of chemotherapy, as well as from carrying the baby inside her spent body.

Stephanie’s body was to endure even more. The results of the MRI and mammogram showed no sign of the cancer. However, Stephanie’s oncologist, afraid the cancer would grow back, felt she should continue with a less‐toxic,

weekly treatment for another twelve weeks. The oncologist said the drug would

be “less stressful on the baby but more difficult on the mother,” and that was no

lie. Stephanie described some of what happened to her during the next few

weeks:

“After three weeks of treatment, my nails began to turn yellow, then

brown. They had become infected (from the chemotherapy) and a thick crust

formed under each nail. At times, my nails would ooze a grotesque, yellow

puss.”

Stephanie was bald by now, her hair completely gone from the extended chemotherapy treatments. She remembered trying to explain to her now three‐ and five‐year‐old children that “Mommy had a boo‐boo and was taking bad medicine that would make her feel better.”

I marvel at what Stephanie said to her young children. When I was first

diagnosed in 1991, my son was twenty‐two months old. There is no good way to

tell your child that you have cancer. How will they understand? How can you 48

explain to such a new person—a person who you are supposed to help positively

adjust to life—that you are now dying? You’re dying, and the medicine you take

may or may not help you—but it will definitely hurt you, in fact, the medicine

can sometimes even kill you. At thirty‐four, I barely understand the concept of giving poison to sick people. How does a child understand? It seems there is no perfect way to help young children digest the horror that is now their reality.

Who could tell her child, “Mommy might die, and you’ll be alone with daddy, and though your life will go on, it will never, ever be the same for as long as you

live.” A cancer diagnosis is difficult enough as an adult without having to

explain the inexplicable to children.

And then, Stephanie’s baby was born.

“I had Michael on August 12th. I wish I could say that he was born healthy

and perfect, but he wasn’t. I thought it was something I had done, though the nurses soothed my fears and told me it had nothing to do with the chemotherapy.

“I had developed a fever during delivery, and Michael was rushed to the neo‐natal unit for an infection check. He had pneumonia—one of his lungs had collapsed. When I finally saw my little boy, he had every tube imaginable in his

tiny body. I thought I was going to have a breakdown.”

Stephanie speaks of the day with great sorrow, but also, with tremendous

joy. Michael was seven pounds and one ounce at birth. Stephanie remembers

that she thought he was “beautiful.” She calls Michael her “miracle baby.”

There are layers of meaning in that simple phrase. 49

In the weeks that followed Stephanie would resume her weekly

chemotherapy. After a treatment, she would run upstairs to the neo‐natal unit to

feed Michael his bottle before the nurse could do it. Stephanie was exhausted

from the delivery, from the continued chemotherapy, and from now having a

sick child in the hospital, as well as two others at home. Her husband, Mark, was

as supportive as possible, but had to work four, twelve‐hour shifts a week.

Stephanie relied heavily on her parents for help:

“My parents were…I don’t know how to explain it…I would have never made it through this without them. My dad watched the kids when Mark was working so that my mom could go to all my many doctor appointments—and I had a lot of appointments! I had an oncologist, radiologist, gynecologist, surgeon, and even an eye doctor—my eyes began constantly tearing after I’d given birth. Apparently, it was a side‐effect of the chemotherapy. Not one time did my parents ever complain or say they were too tired. There were days that I

was not sure I could care for the kids because I was so incredibly tired all the

time. Any extra energy I had went to taking care of the baby. My mother came

with me to each and every appointment; she rearranged her work schedule to be

with me. My parents also listened when I felt so scared I didn’t think I would make it; they let me cry when I needed to, and left me alone when I needed to be

alone. I’m their only child. I must make sure that I’m around to care for them when they need it….”

Stephanie’s words touch me in a particular way. Though my parents were not as helpful as she describes her parents to have been, I, like Stephanie’s parents, have a single child. I’ve always been thankful that I’m the one who gets

cancer—in my mind, I want, even need, to believe that it comes to me instead of

my husband, and instead of my son. And I truly mean it—kill me, take me, just 50

leave my family alone… I talk to no one in particular, perhaps God, perhaps the

cancer, perhaps both. The situation is intolerable, yet must be tolerated. It’s like

some perverse cosmic irony—a Greek moral on patience, but Sophocles is not the

author of this tragedy.

Stephanie’s perseverance and courage paid off with her miracle baby,

Michael. Today, he is healthy, walking, talking and perfect in every way.

Michael truly is a miracle—but all miracles have a price. Stephanie was

diagnosed again in March 2005. Her cancer spread to her bones, liver and lungs.

Only twenty‐six months stood between her original diagnosis and her

recurrence.

This somehow seems cruel and/or unusual—but it’s not. In fact, malignant cancers can typically return anywhere from two to four years after

diagnosis. Somehow, that doesn’t appear to equal out when considering the

lengthy and difficult courses of treatment. One year of treatment for one year of

life? No person would classify that as fair. But the question is never why. This

is no game. There are no rules. I’ve discovered that the perfect question is not

why but always, why not.

“I feel that I was given cancer for a reason and I must do something positive with this experience,” Stephanie tells me, “Through the Breast Cancer

Coalition, I’ve started a group with several other patients I’ve met during treatment. We put together bags for newly diagnosed women. Each bag contains useful items and information. It really helps me to do this. Our group has named our project, ‘Sister Sak’.”

Again, Stephanie and I share common bonds beyond having cancer. I,

too, decided that my cancer experience was, while not fatal, fated. Strength and 51

courage are great characteristics—so what do you do with them when the fight is

over? For me, it meant starting a not‐for‐profit fund for brain tumour patients.

Each year, I host a walk‐event to raise both awareness and monies for the cause.

In the last two years, the effort has raised over $15,000. The money has helped

multiple families pay for clinically‐based costs not covered by health insurance.

Sounds pretty heroic, doesn’t it? Not really. It was actually one of the most

selfish things I’ve ever done.

One of the writers for the Superman comic book, Mark Waid13, answered

the question about why Superman does what he does. Waid felt that

Superman’s reasons were mainly selfish. Superman used his super‐human

abilities to benefit the people around him, including himself. By helping others

in his community, Superman, an outsider, was able to feel as if he were a part of

that community. Also, Superman, like all of us, was searching for happiness.

Waid used Aristotle’s idea about the root of happiness growing from the human

need for personal excellence.

This is the case for me, and for Stephanie. As a cancer patient, you

suddenly feel cut‐off from the world, isolated. You go through all these trials,

only to return to regular life. The problem is that life is never “regular” again—

like Campbell’s theory of the hero cycle14, each hero has a transformation of consciousness. This is just as true for women with illness.

We were, and are always, close to death. While things can change very

quickly during the course of life, there are no second chances after death. In a sense, you feel as though you’ve been given another chance at life—and maybe like me, it’s your third, or even fourth, chance. Why sit around? Life is not a

13 See Superheroes and Philosophy, edited by Matt Morris and Tom Morris (Open Court, 2005) 14 See The Power of Myth, edited by Betty Sue Flowers (Anchor Books, 1991) 52

luxury for people like us—we’ve bought each day with blood. It’s an expensive

price to pay. I guess you might liken it to paying for a Mercedes, but without the

luxurious options that come standard with being healthy. You must make the

very most of each day…there’s just no other option. You’ve paid the price, now

it’s time to drive, even without any luxury‐features.

As I began to feel well again around fall of 2002, one year after my

recurrence, I began to get angry that others, people I knew, or people my

husband knew, or people who knew what was happening in general, never

offered even a kind word. There were just so many. Not just friends, family, too.

I could not comprehend (with my new perspective) how people could be so

foolish, so ignorant, so…selfish. Stephanie had similar experiences:

“It’s an odd thing, but I noticed several friends avoided me during my

pregnancy and treatment. At first, I was fairly annoyed; though I kept it to myself. However, after considering it further, I realised that these people just did not know how to deal with sadness and illness. For some, it was too close to home—I was their age. Mark’s brother, Brian, ‘couldn’t be around me because it

was so sad.’ My best friend, Michelle, called a few times, but always centered the conversation on her own life to avoid talking to me about mine. My aunts were of no help at all. My sister‐in‐law (has) helped only three times over the course of the eighteen months that I (have been) ill. I get a little sad thinking about it because, if she were sick like me, I would have been there every day.

And you know, I couldn’t go out much—it was bad enough to take the kids to school in my wig, feeling self‐conscious—it was as if the people I saw knew I had no hair. I just felt safe at home, but I could have used more friendship.

Surprisingly, my neighbor, who I barely spoke to before, arranged with her 53

Bible‐study group to deliver thirty‐seven meals to my family during my

radiation treatments. She is truly an angel.”

I wish I could say my experiences were different from what Stephanie describes. My husband, Bob, comes from a large family. He is one of six siblings. When together at Christmas, between spouses, siblings, nieces, nephews, and my in‐laws—there are thirty people. Everyone lives in our area, except for one brother and his family. There were twenty‐five or so immediate family members available during the lengthy course of my illness, and no one, not a single one, helped us. As with Stephanie’s best friend, my good friend,

Sally, called after hearing that I’d returned home from my first surgery in 2001. I was too sick to speak to her, so she talked to Bob. After the call, Bob was incredulous as he told me that Sally asked him, in all seriousness, if I enjoyed my trip to Europe. Europe! Apparently, Europe is code for cancer to those ostrich‐ like individuals who can’t “deal with sadness and illness,” as Stephanie said. I wish I were lying. I wish it was not true. But it was true, and still is. With friends who disappeared, it’s easy to move on because I just don’t see them anymore. But family, now that’s another matter. While I don’t see them often—I still do see them. It took me about four years and lots of Buddhist meditation on compassionate wisdom to feel okay with what didn’t happen when I was ill.

There’s just no excuse—and again, the question is never why, it’s always why not.

Why didn’t they help? Ultimately, it doesn’t matter. But I think Stephanie was on the right track about why people don’t help. Too sad and too close to what could be them. Actually, it’s not what could be, it’s more likely what will be— and that’s the main reason why most people avoid those with illness. 54

A Meeting of the Minds

She walked into the bagel shop, smiling and striding confidently with

strength in her every movement. She looked beautiful, as all of the women I’ve interviewed do. Her auburn‐brown hair was styled just above the shoulder with

wispy bangs and long layers—the Jennifer Anniston look. Her complexion was smooth and pale like porcelain or fine bone china. Her green eyes had a gleam that spoke of a mischievous energy. She smiled wide as she recognised, not me, but my four‐wheeled, purple walker—my signature trademark for the last four years:

“Rebecca?” Stephanie stretched out her hand.

“Yes. Hi, Stephanie—it’s so good to meet you.” I grasped her cool,

slender hand. She looked no different from any other suburban mom in the bagel shop, in her jeans and a twin‐set. She looked…healthy. We sat down at a small table near a window to talk. Stephanie was in the midst of a weekly chemotherapy treatment for her 2005 recurrence. She was about to tell me something incredible.

“Well, the doctors think that I may be able to go down to bi‐monthly or even monthly chemo if this next scan is a good one. I tell you, I’m ready—it’s so exhausting, and I really want my hair to start to grow back. I’m sick of this

wig—it’s itchy!” Stephanie smiles while adjusting the tawny‐colored wig a bit,

fluffing her bangs, rolling her eyes then grabbing her coffee cup and taking a

quick sip before looking up again. 55

“That sounds great.” I look directly at her, but for the next question, my

eyes immediately fall to the floor, “How’s the chemo been going so far?” I ask

carefully, though Stephanie’s last comment was optimistic.

“Of the fifteen spots we started with, only three remain. There’s a few still

on my bones, but the doctors don’t think they’re a problem. There’s one on my liver and two smaller ones on my lungs. I’m hoping we can do some radiation on the lungs, and there’s this new procedure for the liver that literally burns the tumour right off,” Stephanie said with, in my opinion, incredible optimism.

I marvel, once again, at Stephanie’s attitude. While not curled up in a ball

waiting for death, I was not exactly peppy or energetic. It was rare that a smile crossed my lips during my year of treatment after my August 2001 recurrence. I

was frankly angry much of the time—being interrupted for the second time

made me furious. There was also a numbness that seemed to suppress my

emotions. I found no humor in things I’d laughed at before. I cared very little about appearance, clothes, hair, make‐up—it just didn’t matter.

Stephanie seemed to maintain an almost insistent self‐pride and self‐ esteem, something that surprises me about Stephanie, and most of the other women interviewed; all seem to have such a sense of it, even during what will certainly be the most difficult and demanding periods of their lives. It’s incredible, but I think I’m beginning to understand why not.

Psycho‐oncology, an emerging field in cancer research, deals with the

mind‐body connection. It’s from psycho‐oncology and the recent studies within

the field, that my understanding of Stephanie is complete. 56

Cancer will replace heart disease as the number one cause of death in

America in the next few years. According to the Center for Mind‐Body Medicine is Washington, D.C., within five years, one‐point‐two million more Americans will join the existing eight million already diagnosed with cancer. At a 1998 conference exploring the mind‐body connection in cancer patients, a panel of experts discussed how an increase in quality of life can affect the quantity of life in most cancer patients. The session was called, “Mind, Body and Spirit to Treat

Cancer,” and focused on how mobilizing all three was imperative in extending the life of cancer patients. The session of experts was made up of top researchers in the field, like Dr. Julia Rowland at Georgetown University, co‐author of The

Handbook on Psycho‐Oncology. Dr. Rowland cited the work of Pettingale in Great

Britain, who showed through his research that women (with breast cancer) who have a “fighting spirit,” or active coping style, survive longer than those women who feel hopeless and helpless about their disease. Much of the current interest in psycho‐oncology stems from the work of Irving Yalom, who developed research on group therapy with cancer patients in the 1970s, and how that therapy helped those patients live longer than the statistical odds. Dr. Rowland also discussed Fawzy and his work at UCLA developing a psycho‐educational approach to help cancer patients cope. Fifty‐percent of the participating patients in Fawzy’s study lived longer after being educated about the disease, methods of prevention, stress management, relaxation, and counseling.

Being a fighter, being positive, being proactive—all of these traits have

been proven to promote survival in cancer patients. That’s why I know, beyond

reason, beyond science, and beyond doubt, that Stephanie will survive…as long

as she has the will to. Though, I would learn later that having the will to live is

not always enough. 57

Positive support, whether in the form of group therapy, or from family

and friends, seems to be an inextricable part of cancer patient survival.

Stephanie describes a great deal of parental support for herself and her family, but lately, she’s not been getting the same level of support from husband, Mark.

“He sometimes gets angry, frustrated, with me. You know how a chemo‐

brain works, you forget things. Well, the other day Mark went berserk because

there was expired food in the pantry. I was like, ‘What’s your problem? Just

throw it away,’ but I know Mark’s anger had nothing to do with expired food.”

Stephanie described the incident with husband Mark as a prelude to

telling me he will not participate in the interview. Mark was given about six

questions to answer and several months in which to answer them. Stephanie,

with her positive attitude, described Mark as being “too busy” to look at the

questions, and apologized on his behalf (and I regret that Stephanie felt she

needed to explain anything to me, or anyone else). Stephanie also mentioned

that Mark lost his job at Eastman Kodak, a local company that provides a good

deal of economic support in our corner of western New York. Mark had been

out of work for four months when Stephanie and I met at the bagel shop in

September 2005. His frustration and anger was being directed at the one he loved most, and ultimately, would be the most expensive emotional venting of his life.

As Stephanie talked about Mark’s negative behavior, her face visibly fell.

She was still smiling politely, though only slightly, and I began to notice grayish circles develop under her bright eyes, now glazing in a sort of disappointed indifference. Her voice became softer, lower. She no longer looked in my face and eyes, but looked down at the brown laminate table. Her shoulders slumped 58

down a bit as she continued speaking about the ongoing problem with Mark.

Mark was “getting tired of it all,” meaning, he was tired of dealing with her

prolonged illness, treatment, and extended care he must now provide for their

three growing children. An understandable reaction.

My husband, Bob, fell into Dr. Rowland’s denial group, though he wasn’t

a patient. According to Dr. Rowland, cancer patients who opted for the denial

approach survived at relatively the same rate as those patients with a fighting

spirit. “It’s not a significant difference,” said Rowland. While my husband was

never the patient, he was dressing, bathing, feeding, medicating, and caring for one. He never once cried, never once broke down, never got frustrated, never considered that I might not make it. Seems incredible and it was. My husband,

as in the years before my 2001 recurrence, never fully acknowledged the

meaning of having a chronic disease like my Anaplastic Oligodendroglioma, a

high‐level malignancy. That’s a mouth‐full, and it’s as complex and dangerous

as the name indicates.

It was amazing; Bob and I would attend the same doctor appointments

and hear completely different things. Stephanie and Mark had a similar issue,

but instead of Mark hearing only positive things like Bob, Mark tended to pick

up on the negative:

“It got so bad, that I started to bring a small voice recorder to my doctor visits,” Stephanie tells me. “At first, I thought it was me, that I misunderstood.

But that wasn’t true. Mark just heard things…differently.”

I feel quite sad for my now‐friend, Stephanie. I know that my survival

had everything to do with Bob’s unwavering support. Bob wasn’t perfect; in his

denial, he diligently pushed me in my wheelchair to grueling ten‐hour teaching 59

days during my chemotherapy. I was in a wheelchair and would be unable to leave the classroom to go to the bathroom because of my weakened, paralysed state for sometimes up to four hours, until Bob would return to push me to the faculty lounge, bringing lunch with him. In Bob’s mind, I was fine, so it made sense to bring me to work, despite my constant nausea, vomiting, difficulty with blood‐sugar levels, and compromised mobility. How I actually taught the two‐ hundred and forty students I came into contact with during that period (twenty weeks, or two quarters, of teaching, but nine months of chemotherapy altogether) is astounding. How I never contracted a single cold from the brood of germs I came into contact with is equally astounding. During my months of chemotherapy in the 2002 winter and spring quarters at Rochester Institute of

Technology, I required nine different blood transfusions because my white blood cell counts were devastated. I think of all this and marvel at how I managed to survive. But in my numbness, I was willing to follow any lead. My leader was

Bob, as blind as Oedipus, with just as much good intent but thankfully, without the tragic ending. So I would agree with Rowland and Pettingale, denial can be a good thing when dealing with prolonged and difficult illness.

******

Stephanie opened her gift. I give all the women I interview a thank‐you gift, something different for each of the unique personalities who so generously share their experiences. Stephanie’s face was alight matching the luster of the pearl strand she carefully placed around her neck with as big of a smile as I’d

ever seen. She likes jewelry, and was also wearing several fine‐gage, gold chains

of varying lengths, to which she added the thirty‐four inch baroque pearl strand.

Almost opera length, classic with a strong presence, like Stephanie herself. 60

Stephanie’s story does not end there. She continues on her journey

through more trials with more chemotherapy, and more radiation. Though her

husband, Mark, is not always chanting positive mantras, he is still a good

support to Stephanie. She looks forward to her parents taking the two boys, and

her mother‐in‐law taking her daughter, so she and Mark can get away for a

weekend to reconnect and be alone:

“We need to get away so badly. We can’t afford much, but we don’t need

anything fancy. Just the two of us and just for a few days. We’re not running

away from our life, we’re trying to celebrate it.”

Throughout her ordeal, Stephanie has maintained the belief that she will live, to care for herself, her children, and, her parents. That’s a tall order for someone in her position. She maintains confidence and composure in the face of

death. The name fits her—survivor. She has survived and will continue to do

so. She not only has the will, she knows the way. In the face of fear, horror,

devastation, and disease, Stephanie greets each day with a smile. She cries when

she needs to, feels angry when she needs to, but maintains:

“I’m not going to die, I can’t. It’s just not an option. I understand this is something I may have to live with for the rest of my life, and while I’m not exactly excited about that, I am okay with it. It’s what I have to do to see my kids grow up. They’re counting on me.”

***** 61

According to the U.S. National Institutes for Health, though cancer deaths

are on the decline from early detection and better treatment options, breast

cancer diagnoses are still rising. One out of every eight women will be diagnosed

each year and the latest statistics from the National Cancer Institute recorded

that approximately thirteen percent of girls born in the U.S. in 2005 will get

breast cancer in their lifetime, a number that has not had any significant change

in the last eight years.

Stephanie’s scans in October 2005 did not show what she had hoped. The

cancer was no longer arrested and had actually increased in size and volume on

her liver. She is now on her “last‐hope” chemotherapy drug as her cancer

continually adapted to each new drug she was given. Stephanie is no longer a candidate for surgery or even radiation; the cancer is too prevalent. The current chemotherapy drug Stephanie is taking has shown in studies with other patients

suffering from virulent strains of malignant breast cancer, like Stephanie, that the

cancer adapts and begins to grow again after an average period of five months.

Stephanie, as of January 2005, is in her third month of the new treatment.

*****

The Death of My Friend

Stephanie died in the early morning hours of Sunday, March 19, 2006. She was at home, surrounded by loved ones, including her mother, who moved in with Stephanie and her family after Stephanie was given her final prognosis at

the end of January 2006. I was allowed to visit with Stephanie at least twice a

week every week before her death. Though my gaze fell upon the incremental

but steady failure of Stephanie’s body as she approached the end, I will not

recount it in any detail. It is too personal, too private. It must be sufficient 62 enough to say that Stephanie, as she lay in wait for the final stage of her life, met each new change in her body with the epitome of courage, beyond any articulation that I might muster here.

I miss you, Stephanie, I miss you…. Teri’s Story

She was thirty‐three when first diagnosed. My age as I write this. I try to

imagine what the last fourteen years would have been like without cancer in my

life. Simply impossible! Even as I sit typing, my right hand dominates the key

board while my left sits helpless and still, waiting to receive the concentrated

neural command to hit the shift key when I need to capitalize a letter—part of the

neurological injury sustained after the first of two surgeries in 2001 during my

recurrence of brain cancer. I was thirty in 2001. Teri is now forty‐nine.

“Please let it be fixable, please let it be fixable,” was Teri’s first thought on

August 1, 1989 upon hearing her initial diagnosis. Ovarian cancer. Surgery was

necessary, but Teri did not know what to expect beyond that. Today, Teri knows

all too well what to expect because Teri’s cancer returned in 2003.

“When I found out the cancer had returned I let out this guttural scream…,”

she said, looking down at her desk as she spoke.

I could only see the top of her short, curly, salt‐and‐pepper colored hair, but

knew without seeing that her eyes were welled with salty tears, still grieving

about the painful interruptions in her life. I knew, because I do the same thing.

Teri sits in her office. She is a guidance counselor at a high school in

western New York. The space, about fifty square feet, is full of family photos

and memorabilia, including things about cancer. Purple is the color for ovarian cancer awareness. A purple ribbon‐shaped bumper sticker is tacked to the wall‐ sized bulletin board behind her large tan‐steel desk; all around the ribbon‐ 64

shaped bumper sticker are photos of Teri with groups of people that must be

family and friends.

“They’re my pictures from the 2004 Relay for Life—an event the American

Cancer Society holds every year,” Teri tells me as she notices my glance at the photos.

Teri begins to discuss her 2003 recurrence, but I wondered, as she spoke, why she was not talking about her initial diagnosis. Part of the reason why I

chose to interview Teri is because of her fourteen‐year survival between

diagnoses. I want to hear the whole story and interrupt her to ask:

“Can you tell me about your life before the first diagnosis in 1989?”

Teri’s genial smile, the one she wears for her students Monday through

Friday, disappears, though it is still Monday.

“I’d rather not talk about that; well, if we do talk about it, I don’t want it in the book,” Teri looks hesitant as she speaks.

The ethics release form she signed sat inches away from her, but in front of me, on her paper‐ridden desk. Her eyes dart to the form quickly, then back to me.

“I won’t put anything in that you don’t feel comfortable with…,” I say,

hopeful to reassure her.

The look of acceptance masked the moment of inner conflict as Teri breathed

out her anxiety and spoke as she exhaled, “Good—thanks.” 65

“So, were you and Bill married at the time of your initial diagnosis in 1989?”

I ask as nonchalantly as possible, looking at my notepad and continuing to make

notes about the intriguing artifacts in and around Teri’s office.

“I hoped you weren’t going to ask that question. No, I was not married to

Bill,” Teri answers with a resigned expression to tell the truth and nothing but the truth, so help her God. “I was married to someone else, the father of my daughter and son. It was not a happy marriage, though we have two wonderful children. I was too lazy, or maybe too scared, to make a change until I began to recover from the first surgery.” She hesitates, not wanting to continue, but with an obvious resolve to tell her story. She decides, after a thirty second pause, to keep going, “Now, I really don’t want this to be in the book, okay?”

“That’s fine…you don’t have to tell me anything you don’t feel comfortable with,” I add, hoping Teri would still choose to reveal whatever difficulty may have caused what I knew she must have experienced before her original diagnosis, extreme pre‐diagnosis stress. And I was right.

“In 1991…,” she begins slowly, her blue eyes flashing with determination as

she proceeds with what must be uncomfortable. Her shoulders drop

momentarily, then straighten as she continues, “…I met Bill. We were at an educator’s conference. We just sort of hit it off; it felt like fate. After some time

passed, we realised we needed to be together. Bill was married with two

children as well. We each left our families to begin our life together,” and Teri

stopped speaking again.

***** 66

Teri and Bill married soon after. Teri did not divulge further details but she

did tell me how difficult it was to be away from her children. She saw them at

regular visitation intervals, but would never be a full‐time mom again. Recently,

Teri’s daughter married. Teri describes the wedding as “wonderful” and a time

of “joy, healing and closure.” Teri’s first husband never forgave her for their

divorce, and neither did his family. During her initial diagnosis in 1989, her first

husband and in‐laws didn’t seem to forgive her for being sick either.

“It was very strange, but no one really helped out after the first surgery; no one showed much concern at all. Life was just supposed to go on, I guess. But things had changed for me. I realised that life was short—too short to not live everyday to the fullest. It wasn’t enough anymore, my life. It was like I knew I needed more, but didn’t really understand what that ‘more’ was until I met Bill.”

And I interrupt, “When you met Bill in 1991, two years after your first diagnosis?”

“Right. Bill and I started to talk after one of the conference sessions. We

talked about life and happiness, and realised we both missed the same things in

our lives. Bill is an extraordinary man. (He is) very loving, thoughtful, kind,

protective…like no one I’d ever known,” and Teri’s smile returns to her face.

As she spoke about Bill, Teri’s eyes mellowed exposing touches of green and

grey, bringing new light to her face. Teri has a kind, befreckled face. Her entire

expression softens as she speaks, the wrinkles in her forehead and creases

between her eyebrows disappear and her face takes on a more rounded shape as

she smiles. She glances down briefly at her left hand; her ring finger is adorned

by a yellow gold band set with multiple, brilliant‐cut, bezel‐set diamonds. 67

“Did Bill give you that ring? It’s gorgeous,” and I truly did marvel at the

contemporary design, guessing that the beautiful ring was a gift from Bill, Teri’s

husband.

“Yes, it is. It’s an anniversary ring. Bill gave it to me after we got through the last bout of cancer.”

Watching Teri smile and look at her ring reminded me that I also have an anniversary ring that my husband gave me after we finished with treatments for

the brain cancer recurrence. Mine is a three‐stone ring, symbolizing our family

(my husband, myself and our son) as well as our past, present and future—the idea for which was spawned by a cleverly designed DeBeers diamond campaign that talks to everyone’s subconscious, regardless of gender. The center stone is the most prominent, symbolizing our present lives. After the difficult years

following my second diagnosis, both my husband and I felt that living for today

was the most important thing we could do. Similar to what Teri felt after her

initial diagnosis about life being short. Teri’s ring reminded me that not only do

we share a common cancer experience, but so do our husbands. The terror of

losing someone you love, and the consequent relief of not losing that person,

results in the same extreme emotion—extreme enough to purchase diamonds.

Next, Teri gets into the nitty‐gritty, the dark corners of illness that no one

wants to know or imagine, but what must be told:

“I needed surgery again in 2003, what’s called a laparotomy—a sixteen‐inch

incision to open up my abdomen and pelvic area for a thorough search for

tumours. (Before) the surgery I needed to have a barium enema and a

colonoscopy—two rather grisly procedures! I drank whatever disgusting things 68

they gave me and endured the indignity of the procedures because I would do

ANYTHING they asked of me.”

Teri’s description hits home. She is right to use the word indignity.

Everyone saw me naked while going through my 2001 recurrence, and I mean

EVERYONE. Not only did everyone see me naked, but I also had a shaved head

and a long, sick‐looking incision tracking across my already heavily‐dented skull

from previous surgeries. There were so many tests to endure, so many doctors to

see—after a while, you begin not to care much about dignity. All that matters is

making it through the day.

“I didn’t want to die…truly, I would have done whatever (the) doctor told me to do,” says Teri, and I agree.

As a cancer patient, you are forced into a world that is foreign and strange.

Discomfort and indignity are just the beginning of the hardship, if you’re lucky.

Teri’s responses seemed to acknowledge this, and yet, I was somewhat amazed at her incredulously positive attitude; her accounts of how everyone was extremely supportive and the joy she reported to feel, even during chemotherapy treatments—it just didn’t make sense. Something was missing. Teri was leaving out certain details, like when I asked if she lost friends during either of her experiences. Teri’s response was that everyone was supportive, and yet, in almost the same breath, she admitted that “some people did disappoint” her.

When I asked her what her children’s reactions were to her second diagnosis she immediately mentioned her daughter beginning to cry and rather breezily mentioned that her son was “trying to act cool.” Her son was five years old when she was diagnosed in 1989. He was seven when Teri remarried Bill. Her 69

daughter, who was engaged to be married in December 2004, had been older for

both traumas.

Things became clear as we broached the topic of her daughter’s recent

wedding, a wedding where Teri would need to face her ex‐husband and his family—all of whom, she confided, never even acknowledged her after the divorce:

“I felt a pain in my left hand; it was just like the feeling I had when receiving

the initial surge of chemotherapy—that was just before we arrived at the

wedding. I was so nervous. You have to understand, my ex‐husband and his brothers hate Bill. The family was very male‐oriented, a traditional Italian family.”

And I ask Teri a question here:

“What do you mean by male‐oriented?”

“Well, my family was the same way. The men run everything, and the women are just there, expected to be supportive of the men,” says Teri as natural

as any reflex.

Now things were beginning to make sense.

“You haven’t spoken about your family, mother, father…were they

supportive of you over the years?” And again, like an expert skater on newly

swept ice, Teri practically glides over the question:

“It was hard for my family to see me so sick. They visited me, but we didn’t

see too much of them,” Teri looks at me. The crease between her eyebrows 70

deepens. The genial smile that she uses Monday through Friday with students is

also gone. One of Teri’s defense mechanisms is denial.

Earlier, Teri mentioned that her husband, Bill, called her a “Polly‐Anna

type” because of her tremendously positive attitude, or as Teri phrased it, being

like a “perpetual cheerleader.” Though Teri said no more about her parents and

siblings, the reason why was clear: There was simply nothing more to say. They

had not really been there for her, much like her son’s lack of response upon

hearing her diagnosis, or the supportive friends who did, in fact, disappoint.

As a survivor, it is difficult to acknowledge when people do not treat you

appropriately. It’s not just a difficulty for survivors; it’s hard for everyone really.

But as a survivor, in your heart, you understand that your life is forever altered and though you may see good in some of the alterations, it’s only because you have to. Cancer comes back—so what survivor languishes on negative feelings?

None do, it’s impossible to live the way every survivor understands life must be lived after such an extreme interruption. Perhaps there is reincarnation, as the

Hindus believe, but as far as anyone truly knows, no one has come back. You have one life and it’s relatively short. If you’re a cancer survivor, your life will be interspersed with periods of high difficulty until there is a cure or until your death. Three‐hundred and forty‐two women out of one‐thousand in New York

State are diagnosed with cancer each year, according to the American Cancer

Society. Taken to a larger scale, that figure relates to roughly one‐third of the female population in the United States. So many have died already, it’s hard to imagine that a cure will come before death does—regardless of the variety of cancer. 71

“…I find myself practicing this (one) these days…to remember that people

will remember how I made them feel.”

This statement was one of the final clues to Teri. Though she faced death

and endured near‐torture through her cancer treatments, Teri still worried about

what others thought. When I first heard Teri say this, I felt almost angry at her—

she should be primarily worried about herself, not others; what I missed was that

she was thinking of herself.

Cancer is not always a death sentence. But cancer is still not an easy disease

to deal with. Survival depends upon a number of variables, including genetics, psychology, early detection, available treatments, even where a person may live when diagnosed can be important. The thing about survival is that the diction says it all. A person survives cancer. It’s not like the flu where you’re sick for a few days and then you’re better, and back to everyday life. The treatments for cancer are highly toxic and have contributed to the demise of innumerable patients. So, to survive something like cancer almost always results in a personal shift in perspective—some feel like it’s a second chance to handle life better than before their diagnosis.

Teri’s perspective shifted to focus on others for their benefit, as well as her own. Why? It’s classic superhero philosophy. Take Superman, the Man‐of‐Steel.

He’s isolated from the human community, being an alien from another planet,

Krypton. How can he possibly fit in? Superman used his super‐human powers

to help the human community he felt isolated from. As he helped others, he also

helped himself.

Think about it: Don’t we all do something similar when we write a check to a charity, or when we decide to volunteer, or donate clothing to Good Will? Yes, 72

it’s to ultimately help others, but we also help ourselves—we feel good when we

help others. Maybe it’s to balance out karma, or to be a good role model but no matter the reason, we benefit from caring for other people. Selfish is a word that tends to have negative connotations, but it doesn’t have to, not when being selfish can help others, too.

My first diagnosis in 1991 terrified me; I didn’t feel liberated, but trapped. I

was driven to do everything I could before the cancer returned, though I was

told the disease may not return for up to ten years, I was only twenty years old.

Ten years meant I may make it to thirty—not enough time to do everything I

wanted, but perhaps enough to see my son through the majority of his

childhood. After my 2001 recurrence (at age thirty), I at first felt invincible—like

I had walked through fire without burning any flesh. The invincible feeling

melts away with each passing year as the statistical average on survival for my

particular cancer draws nearer, and nearer still. I don’t feel liberated exactly,

though what other’s think and do are of very little concern to me now. I lack

patience when it comes to people at times; it infuriates me to see squabbles over

petty ideas when life is waiting all around. I suppose this latest evolution is best

described as an extreme intensity…about everything. I realised that Teri and I

had similar shifts—though I did not immediately recognise this parallel.

While I’m not terribly worried about what people think of me when doing everyday tasks, like grocery shopping, I do want people to know I care. After my 2001 recurrence, I started a non‐profit fund to raise awareness and monies for local brain tumour patients. It took a tremendous amount of personal, emotional and financial resources to start the initiative, but I did it. To an outside observer, my actions would have undoubtedly looked like madness. In three months, I

organised volunteers for the fundraiser, handled all the publicity, found and 73

reserved a place for the event, paid the liability insurance, raised close to $4,000 in corporate sponsorship, solicited food and bottled water donations, as well as sixty other individual donations for a raffle, and much more…in just three

months. And I did it all while working full‐time and caring for my home and

family. It sounds crazy, even to me! The event raised $10,000, which went directly to benefiting brain tumour patients. The money helped multiple families

deal with staggering clinically‐based costs not covered by health insurance— something I understood first‐hand. I never stopped to ask myself why I was

doing it—I just did it. But why did I do it?

I’m not particularly kind, patient, understanding, or caring—I mean, I’m not

devoid of those characteristics, but they are not, and were not, my primary

motivators. My need to contribute to society in what I perceived to be a

meaningful way, and in the face of an escaped death, and in recognition of

renewed life, and in acknowledgement of a future that would see, yet again, the

return of what is, beyond doubt, a monster (that will enable my ultimate

demise)—all contributed as primary, selfish motivators…just like Teri. When

selfishness helps to ease the suffering of others, it’s never a bad thing.

Teri is a remarkable woman; she shows this daily in her chosen profession,

guiding teenagers to a positive future, despite their raging hormones and still‐ growing brains. She said, “Having cancer has stripped away some of the

superficial layers.” A more accurate statement could not be made. In her first

diagnosis, like all heroes, Teri accepted the call. Heroes can be reluctant,

especially when facing a daunting task like cancer. But heroes typically have

companions to help along the way. During her first diagnosis, Teri described a

very lonely period, a time when she felt isolated from the people she cared about 74

the most. And yet, she still succeeded in completing her early trial with cancer.

Not many of us could go it alone in similar circumstances.

My husband was there to support me for all three diagnoses, the brain

tumours in 1991 and 2001, and the Melanoma in 2005. I would not have

survived without him. Teri survived on her own during her 1989 diagnosis; if

that’s not heroic, I don’t know what is. During her recurrence fourteen years

later, she would have more support to help her through the next trial.

Teri described using several talismans to help her get through the difficult and lengthy rounds of chemotherapy during her recurrence: a stuffed bear (a gift from a friend) and a photo bracelet. Teri had the bracelet available at the interview. I had never seen such a collection of cancer memorabilia; usually, people collect mementos and take pictures to remember family vacations or parties, to commemorate happy times, not cancer. The bracelet was silver‐tone and fashioned in a Victorian slide‐style bracelet with miniature frames along every half‐centimeter or so of the bracelet. Each frame held tiny pictures of Teri’s children, step‐children, and of course, of Teri and Bill.

“Before going to my treatments, I would jump in a circle three times and say,

‘Bunny, bunny, bunny time.’ I know it sounds silly, but it became almost like a superstitious thing where I felt I had to say and do this little bunny dance, as Bill and I came to call it, before leaving for treatments. When I was really feeling badly I would say to Bill, ‘Do we have to go to chemo? Can’t we just go to

Disney World?”

Teri’s face glowed, like a young girl who revealed a secret, as she recalled

these very personal memories of her cancer experience. My memories included lots of vomiting and illness, watching the horror of 9‐11 unfold on television with 75

no feeling, emotionally or physically, as I lay paralysed in the rehabilitation

hospital, not being able to shower, dress or feed myself—and a list of other un‐

pleasantries too long and tiresome to review here. Looking at Teri and hearing her story almost made me feel ashamed that I had not met my own cancer‐ enemy with the same light. But for me, I needed to fight with anger and determination—I was like a soldier in war, where there can be no light.

Cancer strips away the illusion of control, as in the ancient Indian philosophy of Vedanta. Vedanta describes the world around us as Maya, or cosmic illusion. There is no real control. There are only vague guesses and glimpses into what is perhaps your future, if you have a future at all. And this is no way for a human being to live. Psychologically, a person, any person—male or female—must regain some semblance of control, or at least personal agency, over what they consider to be their life. Teri seemed never to have had that personal control or agency when considering her life before 1989. It often takes an extreme experience to illustrate what is missing. Teri realised rather quickly what she was missing, and through Bill, managed to reclaim some agency over her life again. However, as Teri’s interview continued, she allowed me to see when and where she felt she lost that agency again as the years went forward:

“I was known as the ‘first lady of Brighton’; Bill was a highly regarded principal of the Brighton School District. He was so wonderful at his job and so

many people knew him and respected him. I was very involved in his

professional work, joining him for school plays, sporting events, district

dinners—but I began to feel like I was losing some part of myself,” says Teri

regarding the year before she learned of her second diagnosis. 76

Teri felt she could not discuss this “loss of self” with Bill—after all, he wasn’t

directly doing anything to make her feel this way, like her first husband did. So,

the stress and pressure continued to build, then, more stress: Teri’s daughter got

engaged. Typically, a wedding would be a joyous occasion for any mother‐of‐

the‐bride, but for Teri, it meant facing her past…something she was not

particularly excited about. Teri also feared that Bill would, at the very least, be

treated poorly by her ex‐husband and his family at her daughter’s wedding.

Teri’s anxiety over losing herself and the impending wedding took a toll in

December 2003 when her ovarian cancer returned. Her cancer was something that defined her life; it was the thing that brought her to independence, happiness and fulfillment with Bill in 1991; in 2003–2004, the cancer recurrence would help Teri and Bill find each other anew, and again, give Teri the agency to reclaim her own identity and happiness.

After her diagnosis became public to Bill’s colleagues in Brighton in early

2004, Teri was no longer known as “the first lady of Brighton” but finally by her

first name to all the concerned parents, teachers and staff from Brighton School

District. The support from the district was overwhelming. Teri received cards

and gifts daily for over six months, including things like a portable DVD player

stocked with new DVD’s and CD’s, porcelain dinnerware, jewelry, and more.

“I was amazed by the outpour of concern; some people I had known for

years and others were complete strangers. It was really wonderful,” Teri says of

the supportive response from Bill’s school district. The next thing she had to

worry about was her daughter’s wedding.

The wedding happened in December 2004. Teri had completed her

chemotherapy treatments in March of the same year. Teri had again not received 77

any acknowledgement or support from her ex‐husband or his family, but her

daughter revealed that several aunts had asked about Teri during her 2004

treatments. Teri now had hope that the impending wedding did not necessarily

mean impending doom.

Teri happily described how her ex‐husband and his family met her and Bill

with open arms at her daughter’s wedding, congratulating Teri on overcoming

her illness and even thanking Bill for being such excellent support. Teri said that

her ex‐husband’s family treated her very well—much better than they had

during her 1989 illness. Both Teri and Bill were delighted by the unexpectedly

warm reception at the wedding, but did the anxiety about the wedding,

combined with increasing feelings that she was disappearing, contribute to the

2003 diagnosis? If a positive attitude can help a patient survive, why can’t a

negative attitude contribute to cancer itself?

While her first diagnosis allowed her to reclaim agency over her own life,

Teri’s recurrence allowed her to reclaim agency through the actual disease itself.

The cancer seemed to be the solution to all of Teri’s anxiety previous to her diagnosis. In fact, this stress is apparent in another, non‐cancer diagnosis she received before the cancer was rediscovered.

“I had developed a pain in my upper right quadrant, especially noticeable

after I spent Father’s Day planting flowers (for Bill), bending over and crunching

up (my abdomen). After school was out (in June 2003) I went to the doctor who

sent me to diagnostic testing, everything from ultrasound to CT scan, even

nuclear imaging. My husband and I didn’t tell anyone—we didn’t want anyone

to worry. The diagnosis was a porcelain gall bladder—a relief that it was not

cancer.” 78

But it was cancer.

After Teri had surgery to remove her gall bladder in mid‐September of 2003,

the surgeon had told her he found some suspicious areas.

“All I could say to Bill on the phone was, ‘It’s not good news,’ before

beginning to cry uncontrollably. When he got home, all I could do was apologize for what I was about to put him through….”

On some subconscious level, did Teri want to have the cancer back? It

would not be so unusual….

Since my recovery from the 2001 recurrence, I, too, have been busy

reclaiming as much agency as possible. All this reclaiming of agency has found some dips in the road, however. Difficulties at work put so much stress on my life that I began to wish, in some very small way, that I was dealing with cancer again instead of the absurd politics in my professional sphere—it would be more

straightforward, and in that way, a bit less difficult to deal with—at least in my

mind. Less than three months after this first horrible thought was born, I was

diagnosed with Melanoma—physically easier on my cancer scale next to my

experiences with brain tumours, but just as terrifying, if not more so. Melanoma

has no cure but complete removal, and if the cells have entered the bloodstream,

the cancer will metastasize into the liver, lungs, and/or lymph system—not

surgery, nor radiation, nor chemotherapy has proven effective on Melanoma.

Did I give myself cancer? Did Teri give herself cancer? The question is too

terrible to consider—and yet, we must consider it. There is yet no physical

measure for such a mind‐body connection—but still, we know it exists. 79

How often have you faced down a coming cold by adjusting your attitude,

“convincing” yourself, and possibly others, that you are not sick, and in fact, the

cold never completely manifests? It comes and goes, unnoticed by all, except for

you. I do this all the time, and though my immune system was pummeled by chemotherapy, I’ve never been sick since—it’s been years. Of course I’ve felt a cold coming on once in a while, but I adjust my attitude—decide not to be sick, and continue with life and work. Staving off a cold is not exactly the same thing as preventing cancer—though I wish it was. A new study from a California‐ based laboratory has shown that women with more stress, such as family, work and other involved activities, actually age faster than women who do not have the same intense level of stress in their lives.15 It’s microscopic, at the cellular

level actually. When we cry, how often do we feel some physical pain from the grief we are experiencing emotionally? How many individuals feel stomach pain or get headaches during a stressful time? These are common enough occurrences in all people.

While one may stop crying by examining more positives aspects of life, or cure head‐ and stomach‐ aches by removing the stress through a day‐off or vacation, it’s not that easy with cancer.

Cancer is not a virus. It’s a disease that develops in all humans, regardless

of gender, ethnicity, or age. And there is no medical cure for cancer. Some people receive successful treatments, and if the cancer is caught early enough, may live long, relatively healthy lives. But this is in no way the case for the

majority of cancer patients. Cancer cells are like guerrilla soldiers; they sleep, or

remain dormant, after treatments like chemotherapy or radiation, until one day,

15 See msnbc.com 80

for whatever reason, those soldiers decide to begin another battle—for some

people, it can mean the final battle.

Dr. David Korones, a local oncologist in western New York, discussed how stress may affect cancer, “There is often high stress surrounding a patient’s

diagnosis, though there is no way of really knowing why cancer manifests in

certain people. Not all cancers are genetic or familial; some seem to come from nowhere. Dealing with extreme stress seems to negatively affect a patient’s course of treatment though. Patients who tend to be positive and more upbeat about their prognosis generally do better than those patients who feel cancer is the end. It’s a very difficult diagnosis; no matter the type of cancer, there are no

“cures.” We are getting better at treating cancer; early detection and better awareness, regular check‐ups, talking to your doctor—all are helpful in terms of surviving the disease.”

Could stress be more of a factor in cancer diagnosis and recurrence then anything else? The environment, what we eat, heredity—these are all factors as well. But the question still remains, how much of a factor is stress? It is evident from the studies that do exist, and our basic knowledge of biology, that what we think and feel does affect our physical selves.

*****

“Bill is my rock and I do not know what I would have EVER done without

him during this most challenging time…he attended every doctor appointment

and was my superior listening ears. He even stayed in the room during internal

exams—there were a few awkward moments in the beginning, but it was easy to

get over,” 81

Teri describes Bill’s support with her typical joy. She is relaxed and moving

more, using her hands and being freer with her facial expressions:

“Bill would pack a neat lunch for us each time we went off to chemo. My comfort food was egg and olive sandwiches, which he dutifully made, as well as

peanut butter and jelly. He sat through those six chemo treatments in the

(uncomfortable) straight‐back chair doing crossword puzzles while I slept!”

Bill is Teri’s world, and Teri is obviously his. How and why the second

diagnosis occurred is unclear and ultimately, is of no matter. What is clear is that

today Teri’s healthy mind and body are both keenly connected to her husband,

Bill, and his support. And it is the same for me.

*****

My husband was there for all of my diagnoses. It was very difficult for him

to see me so weak. After the 2001 surgeries, I was paralysed—he had to bath me,

dress me, feed me, help me brush my remaining hair, help me sit in a chair, help

me with every single thing I had to do…even going to the bathroom, and this

was not for a period of mere weeks—because my injuries were so severe, it was

closer to one full year of constant care. My husband, while caring for me

constantly, was also working, running his real estate business, caring for our

eleven‐year old son, coaching our son’s soccer and basketball teams, cooking,

cleaning, and caring for our home—he was amazing. Never once did he falter—

at least not with me. His attitude was always positive. He never showed

frustration. He also never once felt I would die. And that constant confidence

and support kept me from falling into the shadowy dark as well. It’s not just a

patient’s attitude that matters, but her family’s attitude matters just as much, if

not more. 82

*****

The American Cancer Society (ACS) ranks ovarian cancer as the fourth

leading cause of cancer death. Twenty‐two thousand, two‐hundred and twenty

new cases of ovarian cancer will be diagnosed in 2005 according to the ACS;

sixteen‐thousand, two hundred and ten deaths will occur due to ovarian cancer

in 2005. The death rate for ovarian cancer has not changed in the last fifty years.

The statistics are frightening for those without ovarian cancer, imagine what

someone like Teri must feel:

“I don’t pay attention to statistics—I’m an individual.”

*****

Teri’s story doesn’t end here. Her life, ever‐evolving, continues on. Just after our interview in June 2005, Teri emailed that a recent blood test to indicate

the risk of ovarian cancer showed an increase in her blood level for the potential

of recurrence. An increase in blood levels means that the cancer may be

returning, though it is common for there to be shifts both up and down in blood

levels for no apparent reason as well.

Dr. Cindy Angel16, an oncologist who specializes in reproductive cancers

(and also the physician who treated Teri) remarked on ovarian cancer:

“Cancers, especially ovarian cancers, absolutely follow patterns of return.

Statistically, patients may experience multiple recurrences in their lifetime, depending on age and a number of other individualized variables. There’s no way to know who will suffer a recurrence and who won’t—many do. Most

16 Dr. Angel also treated Sue as well. 83

cancers, especially in advanced stages, while treatable, are not yet curable. It can

come back—the cells may even sometimes evolve and render treatments useless

that may have worked previously. Because of improved technology and drugs,

depending of course on the person, treatment can be successful for two or three

recurrences, or perhaps more—this is relatively new for ovarian cancer, which

was one of the most deadly cancers among women, and still can be without early

detection—which is not to say that early detection is a guarantee of no

recurrence. There is nothing definitive with cancer, except of course, that no one

has been successful yet in finding a cure for the disease; though there have been

some recent strides that help physicians to remain hopeful.”

Dr. Angel’s comments highlight the depths of Teri’s particular cancer

experiences. Though Teri, like the rest of us, must live with her cancer, she is

now truly living. As cosmic irony would have it, it was her cancer that helped

Teri start to live after introducing her to death.

Teri, and her now‐retired husband, Bill, sent me a postcard over the summer.

The postcard was from Disney World.

*****

As of February 2006, Teri received a third diagnosis of ovarian cancer. She

has endured more surgery, chemotherapy, and this time, radiation. During her treatments, Teri contracted an infection in her brain. The infection caused Teri to

suffer seizures. Both the infection and seizures affected Teri’s ability to

articulate. She has trouble “finding” words and is unable to tolerate tasks such

as reading. Teri will complete her chemotherapy in September 2006. If her scans 84

show no growth, she will have a window of time with no chemotherapy. If the

scans show growth, she will have to go to weekly chemotherapy treatments.

Despite it all, Teri remains positive and hopeful. Jacquie’s Story

It was January, just after Jacquie’s thirty‐first birthday. We had met for lunch to celebrate. It was so fast, one moment we were laughing and talking about babies—Jacquie had a ten‐month old—and the next moment, we could barely speak. Jacquie had been diagnosed with thyroid cancer. It was malignant.

The treatment was removal of her thyroid, then intravenous injections of liquid radiation for a solid week, during which Jacquie would reside in the hospital to avoid contact with, and contamination from, her family and friends.

The toxicity would be such that she could not touch her baby or anyone else during that week. It would be at least another two weeks after she was released from the hospital before she could handle her son, and at least six weeks before her husband could touch her again. A very lonely time for someone who already felt isolated by the disease itself.

“I felt like no one really understood what I was going through,” Jacquie tells me. “Not even my parents, or my husband—it was lonely, which made everything scarier.”

Cancer does that—it isolates you. You look around at your neighbors, co‐

workers, family, and friends, and everyone seems to be living a normal life.

When you get the courage to share your diagnosis, those same people who

would smile with ease and wave, or who would share a lunch break and

pleasant conversation, will now no longer look up when you pass, nor share a

conversation. The reason is pure fear. Fear of somehow “catching” the disease, 86

the negativity, the bad karma, the downward trend in fate, the curse, whatever the psychological, superstitious label placed upon the disease that is behind the illogical fear. At first, I didn’t understand this reaction by people when I was diagnosed in 1991—at a time when you are weakest and need those same individuals the most, they back away. When I first met one of my four sisters‐in‐

law, she asked me if the doctors had isolated the virus that caused my cancer.

When she asked me this, she physically backed away several feet while still

facing me, and politely coughed, covering her mouth. When she stopped her

polite coughing, she did not take her hand from her mouth. Despite my own

familiarity with the hurt of feeling isolated from others during my cancer

diagnoses, I was guilty of doing the same with Jacquie.

When she called me to tell me her diagnosis in January of 1999, I listened

and responded, conveying my sorrow for her situation, asking if she needed

help, meals, babysitting, anything at all. I later went to her house bringing a

meal and a gift bag full of magazines like Glamour, Redbook, and books that

Jacquie would enjoy during her hospital stay—some romance novels, light reading for her time alone. I’d also included some body products like creams and body gel as well as some chocolates and tea. All of this sounds lovely—and it was. But that was where it stopped for me, though Jacquie still had a long road ahead to endure … alone.

I never visited with Jacquie while she was in the hospital. I called her

once during her week in the hospital, but it was a brief conversation prompted

by my husband who had called to check in on Jacquie and handed me the phone

(a chivalrous act—he was undoubtedly trying to save me from myself). When

she got home, I spoke to her on the phone a few times, but it was many months 87

until I could see her again, not because she was angry at my obvious absence, but

because I couldn’t do it. And here is why:

In February 1998, I began to have seizures everyday, ten times a day (even with enough medication to put an elephant to sleep) because my tumour was

“changing.” My doctors (four, in two different states and three different

hospitals) could not tell if the changes were due to growth in the tumour because

I had had radiation. Radiation leaves an indelible signature on any future MRI

scans, making those scans more difficult to read. And they call radiation a

treatment! Though I have no excuse for my poor choices during Jacquie’s illness,

my reason for staying away was because I was terrified of my own cancer. It’s always about personal fears. I knew in 1999, though none of the doctors did yet,

that my seizures had returned because the tumour had also. This would become

apparent in 2001, just days before my 30th birthday, when I would also learn that

I needed to have my first root canal—clearly, 30 was not a good year for me.

When you’re first diagnosed with cancer, you’re scared because you don’t

really know what will happen. There is a modicum of bliss in this ignorance.

The second time, I knew. And what I knew was unspeakable in its level of terror—we’re talking way beyond scared. Paralysis was more than a possibility, loss of speech, memory, and death. I just couldn’t see Jacquie in the hospital—it

was terrible and I regret it, but I couldn’t do it, much to own dismay and shame.

Jacquie would later be one of my biggest supporters during my 2001

diagnosis. She would offer to organise my bills, paint my toenails, even take

over the planning of my son, Gary’s, bar mitzvah, scheduled for November 2002.

Jacquie visited with me while I was in the hospital—a grand total of eight weeks

over three months. She would bring me food and always had a smile. She 88

would let me cry when I wanted to, and helped me laugh when I needed to. A better friend I could not have asked for, though I was unworthy of such friendship.

*****

Jacquie’s pregnancy with Zachary was difficult. It was her first and

would be her last. She had wanted the pregnancy for a very long time. She and

her husband married in 1994 and for four frustrating years, Jacquie tried to

conceive. When it finally happened, she was beyond thrilled. But as the

pregnancy progressed, Jacquie’s health began to wane. She had developed

gestational Diabetes—a common occurrence in pregnant women. The mother

becomes diabetic during her pregnancy, but after delivering the baby, never has

a problem again with the disease. But during the pregnancy, especially for

someone like Jacquie, Diabetes can be a rather daunting difficulty.

Jacquie is an accountant, but her hobby is cooking gourmet food and baking

grand desserts and cakes. She is a fantastic cook with a real talent for baking as

well. Food is a passion for Jacquie. She creates delectable dishes with a level of

concentration one would expect to see from a performing heart surgeon.

Detailed, mindful, and precise. Her talents became so well known that

acquaintances, friends and family members alike began to ask Jacquie to bake

cakes for their special occasions. I hired Jacquie to make a 40th wedding

anniversary cake for my in‐laws. The cake itself was a layer of moist French

vanilla with a raspberry filling between a layer of chocolate ganache,17 followed

by a dense layer of chocolate cake. The exterior was frosted in a whipped French

vanilla butter‐cream that was literally woven like a basket on the top and all

17 Ganache is a thick fudge-like frosting made by melting blocks of chocolate in whipping cream. 89

around the sides of the cake—quite a feat to perform in frosting. Jacquie had

placed a cluster of red‐tipped white roses, also made of French vanilla butter‐

cream, in two opposite, diagonal corners of the cake. In red icing, Jacquie had

piped, “Happy 40th Anniversary, Carolyn and John.” The one aspect of the party

that all the guests raved about was the cake, and not just the meticulous detailing, but of the mouth‐watering flavor as well. A person like Jacquie cannot

be diabetic and happy.

I’m diabetic but have no feel for food whatsoever. My family is lucky if I assemble a meal from bags, boxes and cans once or twice a week. Diabetes is still no picnic, but I don’t have a passion for food, if I did, I can’t imagine how difficult and unhappy life would become. Though Jacquie’s Diabetes would be temporary, it was hard for her to stick to the low‐to‐no carb diet. That is why she became ill, and that is why her doctor prescribed, just after her 30th birthday, three months before Zach was due, complete and total bed rest for the duration of the pregnancy.

“I felt so frustrated. I wasn’t supposed to clean or do any household chores, but I was the only one who ever did anything around the house. There was no way I could have just laid in bed all day, and I didn’t.”

Jacquie was not happy at all. She and her husband needed both incomes to

make ends meet. She could take sick‐leave, but would not get her full salary

during her leave. This would also shorten her available maternity‐leave at work

after having the baby, something Jacquie did not want to give up. But the doctor

warned Jacquie that the baby was in jeopardy of early delivery and listed all the

potential problems this may cause for both Jacquie and her unborn son. She 90

agreed, but this began a period of stress in Jacquie’s life that would continue for

years.

Jacquie did not receive the full emotional and physical support she needed

from her husband during this trying time: “Bob wouldn’t look at me the same way while I was pregnant. He wasn’t eager to have sex either. And this was never a problem before. Then, when I got sick during the pregnancy, he barely came near me. After I had Zach things got better but only briefly because of the cancer diagnosis nine months later. I realised then that Bob was like an empty shell—he’s vacant, robotic—doing things automatically, with no feeling. We haven’t shared any intimacy since then.”

Though Jacquie recovered well from both her pregnancy and the cancer, her

marriage did not.

Jacquie prefers that I not discuss the finer details of her marital issues—but stressed that she is committed to the relationship for the sake of their son,

Zachary. Zachary is their only child, and like me, Jacquie pours everything she has into Zach.

“Zachary is like the air to me. As he gets older, it gets more difficult because

he’s constantly moving towards other things. He loves school, his friends,

baseball, hanging out with his grandparents, and me, too—but more and more,

I’m being replaced with play‐dates, and more and more Zach tries his

independence, most likely because he senses my desperate need for him—that’s

why he pulls so hard in the opposite direction.”

Zachary is an intelligent boy with gobs of endless energy and questions. As I

sit typing on the computer, writing this chapter, he incessantly asks me what I’m 91

doing, why I’m doing it, and could he help. At the moment, Zachary is seven years old and in second grade. He is in constant motion and runs the circle from my office, through the kitchen, entryway and back into the office, chasing my

little nine‐pound dog until she runs under my desk to hide. But I can’t hide,

unfortunately. He has a quick smile and easy laugh—something I interpret as a

nervous reaction because he does it so frequently, almost like he’s trying to fill in

awkward spaces in the best way a seven‐year‐old can. I have a feeling he has

developed this habit at home, where there are plenty of awkward moments.

*****

“I was so scared. I could see the bright green liquid moving slowly through

my IV—I knew what they were putting into me, and though they told me this

was going to help, I found it hard to believe or understand. I felt so sick during

that week and for the next three months at least. It took forever to get that stuff

out of my system. It was like it wasn’t really happening to me—and as soon as I

felt better all I wanted to do was to go on with my life and forget about the

cancer.”

Jacquie’s description is familiar. I would lie on the radiation table, head strapped into position, watching the green light beam into my head (it was a

guidance beam—the radiation was not visible), feeling like the whole thing was a

dream—that while it was real—it just couldn’t be reality. I would go into a mental fog during the treatment and when finished, pick up Gary from the play

room where another mom whose son was having cancer treatments would watch 92

Gary during the thirty minutes or so of each treatment over thirty‐two days. I’d

drive home after the daily treatment as if I’d just been shopping, or to the library

or completing some other mundane task. I’d quite literally walk away and get

on with my life. It’s called denial, but it saved me during the hardest points of the first diagnosis. The thing about denial is that it catches up with you, as reality always does.

Reality caught up to Jacquie, too. “You know the debt I had from my college

years, right? Well, try double that now. It’s out of control. I can work for the next ten years and only be working to pay off the debt I’ve incurred. I spend a lot of money on Zach. When he asks for a toy or video while we’re grocery shopping or just out at a mall, I always buy it. I never say no. I want Zachary to

remember me like this. I want him to remember how much I loved him and how much I gave him.”

I did the same thing with my only son. I gave and bought until I had spent

more than a year’s worth of my current salary—which isn’t considered much in terms of a salary, but is considered colossal in terms of accumulated debt.

Perspective is such an intriguing part of the human experience, isn’t it?

Jacquie is no different. After cancer, your focus becomes intensified. Life is

never the same, usually translating into extreme behavior because you’ve looked

death in the eye and walked away. And that’s where the problem lies. You

walked away…this time, but what about the next time? History repeats itself— it’s an old phrase used to describe the need for people to understand their past in order to have more ownership over their future. But as with cancer, people want to deny history, and it always catches up to us. 93

Jacquie does not like to talk about her cancer experience. She feels it is taboo,

as if talking about it will invite the beast back. That’s how I used to feel, too, and

sometimes still do. Writing this book is at once therapeutic but also terrifying.

For my entire adult life, from age twenty until my death, I will have to live with

the shadow of this disease, knowing that the shadow will one day overtake my life and I will die from it, if not directly, then from a hospitalization or

“treatment” related to it. It’s a grievous thought that makes me cry and scream, sometimes silently, sometimes not. I hate it. I’m furious that I feel like this, but this is reality. This is living with cancer. Every day, I know what it is. And I live each day to the fullest, not because of it, in spite of it. Jacquie is merely doing the same:

“I don’t like to talk about the cancer, but I think of it every day. It’s hard not

to.”

Jacquie works nine‐hour days, five days a week. She works hard for an average salary that, as she confessed, is already spent for the next decade. So

when she takes Zachary grocery shopping and he asks for a matchbox car, she

buys it for him, despite the fact that her hard‐earned dollars are already spent.

Every year, Jacquie goes to a Buffalo Bills game with her husband and some friends. The family goes to a marine park in Canada each summer. Jacquie eats

out at restaurants often. She buys the things she both needs and wants. She

loves hand‐made crafts like dried floral wreaths and pottery, and loyally attends

local fairs each year to continue her collection. She eats what she wants and

enjoys every morsel. She works out four days a week and maintains balance

between eating and exercise: 94

“I’ll never be skinny, but I’m not exactly fat either. I’m average and I don’t care if that means I’m fifteen pounds heavier than I should be. Life is short. Eat

chocolate…and other desserts, too!”

I couldn’t agree more.

Jacquie deals with her disease in other ways as well. She supports local cancer efforts by participating in events and collecting thousands of dollars for the cause. Each year, Jacquie has raised more than ten percent of the total proceeds for my brain tumour walk. A typical year for the walk effort is

anywhere from $10,000 to $15,000—Jacquie usually brings in corporate

sponsorship totaling at least $1000 each year. On top of her corporate

solicitations, Jacquie enlists her entire family, her office‐mates, and her friends to

participate in the event and also give generously. Jacquie, like all the women

interviewed, and others who have not yet had a chance to tell their story, is an

amazing woman, an amazing survivor. She may be private about her experience

and the hardship it has caused in her life, but she gives with an open heart

anyway. She doesn’t want acknowledgement; she doesn’t want attention for her

good deeds—she doesn’t need it. This is so different from my own feelings for I

crave acknowledgement to help salve my cancer wounds.

*****

At first, my craving for acknowledgement was to tell the people who

disappeared during my illness what they had missed. I wanted those people to read my story in the newspaper, in magazines, hear it on television, and feel guilty. I wanted revenge, and I got it. I received at least a dozen letters pleading for absolution after the media attention for the first brain tumour walk in 2004, 95

confessing sins and expressing insincere apologies smeared across the card or

letter like so much black grease. I could give them no such thing, and even if I

could, I wouldn’t have. Now, I would, and do. But I still want acknowledgement. From the anonymous masses, from those with names, too—it matters not. And while their names don’t matter, their knowledge does. I desperately want to include the community in my experience. I want them, whoever “they” may be, to at least imagine what happened and think, “Thank

God that’s not me,” or “Isn’t she incredibly brave?” Though, I’m not really brave. If I was, I wouldn’t ask for any acknowledgement at all. Not all heroes are humble heroes, but the truest ones are. Jacquie is such a hero.

Jacquie inspires me. Though terrified by the many difficulties from, and with, her cancer experience, Jacquie reclaims agency over life by acting with love—no matter what. She even does things she doesn’t particularly enjoy, like participating in cancer awareness events like the brain tumour walk, because she will not let her negative experience keep her from helping others. Once again,

Jacquie’s unusual, selfless spirit puts me in a position where I feel both dismay and shame.

No one is perfect, especially when cancer is involved. The phrase, “life‐ changing” doesn’t even begin to describe the physical and psychological shifts that cannot be avoided with any cancer diagnosis. But what keeps people like

Jacquie so solid and steady, so generous and giving? For Jacquie, Sue, Stephanie,

Teri, Marina, and for me, as well as all women the world‐over with cancer, whether brave or not, in denial or total acceptance, the thing that upholds us is love. Jacquie has the support of her parents, brother, friends, and the love of her son, the light of her life, Zachary. Love, like cancer, can cause extreme behavior, but also like cancer, almost requires extreme behavior. Love is an extreme 96

emotion after all. It is for love that people kill, go to war, bomb cities and airplanes, write horrible poetry (and some decent stuff, too, like Shakespearean sonnets or the Romanticism of Robert Browning and his wife, Elizabeth), or buy

outrageous things, like years and years worth of toys and clothes for their

children and diamonds for their dying wives; people will take unnecessary

expensive vacations, and most extreme of all, get married!

Love is a kind of madness, something wild and unpredictable. People get it

wrong when they believe faith leads to love. It’s actually the opposite: love leads

to faith. Because Jacquie loves Zachary, she will not surrender her life to her

cancer. She will not wallow in grief and sadness and fear. She will, however, eat

heartily, enjoy beauty and indulge the object of her affection in every way

possible. She will not dwell on difficulties that resulted from her illness, like her

marriage—she does not ask why, she understands why not.

The question of why not is something I still don’t fully understand but have started to at least acknowledge. The question is never why—it can’t be. ‘Why’ doesn’t matter, though it’s an irresistible question that when tempted, can lead to the worst of all sorrows.

“I’d love to have the ideal or perfect marriage, the perfect house in the suburbs, the perfect job where I don’t have to work so hard and so long—but what is perfect? No one has it just right, and the people who you think do, the people who look totally happy, live in the perfect suburban bungalow, have those 10am to 2pm jobs—they have their problems, too. It may not be visible on the surface, but it’s there. Believe me, it’s there.”

She’s right. So, Jacquie accepts her own imperfections, the imperfections of her life, including her cancer, through love and compassion. In Buddhism, the 97

ultimate measure of enlightenment is grasping compassionate wisdom, the understanding and acknowledgement of the misery in others, and therefore

holding no grudges because of uncivil talk or actions—understanding that in their suffering, people do dumb things and that’s okay. What people think about

Jacquie, what people might say or do, just doesn’t matter. All that does matter to

Jacquie is how she feels about herself. It is Jacquie’s motherhood that defines her

courage, as with Sue, Stephanie, and the others.

Motherhood is another extreme, like cancer. As Jacquie’s son grew in her

uterus, so did her illness elsewhere in her body. Her doctors even believed that

the cancer may have developed during her pregnancy. The two, then,

motherhood and cancer, are inextricably tied together for Jacquie. She cannot

have her motherhood, her beloved son, without the cancer. This is the same for

me.

Like Jacquie, I was diagnosed with my cancer when my son was still a baby.

The two are related, the baby and the disease, so there is this strange blend of joy

and fear, but ultimately it is the resulting love that forces the female cancer

patient to fight.

People like my ninety‐year‐old grandmother, who has been relatively

healthy her whole life, outliving two husbands and three siblings, will say things

about the shame of such a young person getting cancer. This kind of comment

immediately pulls me back inside myself where I wail and weep for my hard‐

earned life. Watching silly films like Terms of Endearment, Sleepless in Seattle and

Wit also pull me to that place. I’m like Woolf’s, then Dillard’s, moth to a flame

that way. But Jacquie doesn’t let such dribble affect her. She’s no longer sick and

doesn’t carry the memory of her illness with her either. She’s healthy. It has 98

been seven years since Jacquie’s original diagnosis. She gets checked every year,

but doesn’t make a big deal about it. She doesn’t fret over statistics or worry

about the latest research for her type of cancer. Is she in denial? Maybe, but if

she is, it seems to be working for her. No, her life isn’t perfect, but it doesn’t

have to be. She gets to live and live with gusto:

“I wouldn’t say that I have everything though—I’m not really as brave as

you think. Everyone does what they have to because there is usually no other

option, especially if you’re a mother. When you have children, you can’t afford

to sulk over illness—I mean, I’m no saint and I’ve cried plenty. I’d love to say that I don’t feel some resentment with my marriage. But we’re together—we’re not crazy in love, but we’re together. I have what I need and that’s enough.”

And there is where the difference between Jacquie and I rests. Nothing is

ever enough for me—I expect a great deal from myself and from everyone else

around me. I am compelled to act, to produce because I need to, not because I necessarily want to. In fact, most of the time, in the midst of all my doing, all I really want is to sit with my little dog curled on my lap while listening to music and watching the pines in my backyard sway in the coming winter winds. It’s like what Australian writer, Helen Garner, said about writing and writers in her book The Feel of Steel: As a writer, you’re almost a captive to your craft because if you don’t write—it threatens you. That’s what my drive is like—if I don’t do whatever it is I’m driven to do, like writing multiple books and articles each

year, teaching full‐time, running a student writing club and scholarship,

completing Christmas shopping in October, planning vacations, purchasing all

major and minor household needs, helping my teen son with homework and

driving him to his various events, spending quality time with my husband,

taking care of myself by making time to work out five days a week, running two 99

annual cancer walks and administering funds for each as well as handling

publicity, and that’s not even the half of it—if I didn’t do all of it, I think I’d die

of boredom. My brain would seize and freeze and my diction would be the

equivalent of whatever I could glean from the latest Jerry Springer shows. I’m

never satisfied and I don’t have any immediate plans to be either. It’s never

enough. And I’m glad because it distracts me from the looming fear that is, for

me, ever‐present.

Looking at Jacquie made me wonder if I’m still just a captive of my cancer, and not really a survivor. Are my actions really my own? Or is it because I’m driven, like prodded cattle, to run in a certain direction because underneath it all

I’m afraid I’ll run out of time?

Unfortunately, because cancer has shaped my adult life, I’m not exactly sure.

My ambition has always run my life, even as a child. At six years old, I wrote stories and hand‐wrote two or three copies of each, placing them in an old leather briefcase my father had discarded. I went door‐to‐door in my neighborhood selling the stories for ten cents each—that was 1977. It’s 2005, and

I’m still doing the same thing, except I’m not exactly going to door‐to‐door. I

don’t want to believe that I’m driven by fear alone. I’m willing to admit that the

fear exists. But part of the intense drive is just my particular personality. Maybe

best described as Type‐A by psychologists….

Buddhism is a difficult discipline for people like me, but a necessary

philosophy to consider. I’m a fighter, not just with cancer, with everything—and

again, that has been evident my whole life. Jacquie, though brave and graceful in

her compassion, is not a fighter like that. She doesn’t gnash her teeth and scream

into the wind, “No, this is not going to happen!” She doesn’t try to regain 100

control. She accepts things as they are; people as they are. I haven’t been able to

do that—I won’t do that. A common phrase in my household is, “That’s

unacceptable,” in reference to everything from lack of homework from my teen

son, to poor attitudes displayed on television, to my dog deciding to bark at

some poor child haplessly wandering into our yard for a ball that went astray.

I’m judgmental of everyone, including myself. I need to measure and weigh, like

a true consumer, a real American. Though I don’t think one way is better than

any other. I believe that people must do whatever works for them to both

survive and thrive. For me, that’s being ridiculously driven and ambitious. For

Jacquie, it’s being satisfied with what she’s got and doing the best she can. There

is no single right way—the question is never why, it is always why not.

*****

Jacquie’s life is as complex as the next person’s. Her husband, Bob, declined

to answer questions, like many of the husbands of the female survivors

interviewed. My fear for Jacquie is that somewhere inside she does want and

need, and that she has started to feel helpless and hopeless about parts of her life.

According to mind‐body studies, those survivors with a proactive, fighting spirit

lived six years longer than the average patient with the same cancer. Those who

dealt with the disease through denial also lived longer than the average patient,

but not as long as those patients who were classified as fighters. This is the space

that cancer crawls through. The space where the sleeping soldier‐cells awaken,

then feast and begin to expand, to multiply. That’s the part of Buddhism that

bothers me—I sometimes feel it can be a type of surrender. Though a truly wonderful philosophy, I can never fully embrace the idea that leads to what I

consider surrender. I don’t want Jacquie to surrender to her situation, to stay 101

with a man who does not show her the love she deserves. It is an easy thing for

me to say in my position but it does not negate the fact that children grow up.

Jacquie remains in her loveless marriage for her son. What happens to Jacquie

when Zachary goes to college? Jacquie will then be forty‐eight years old. Will she wait until then to live her life? Women have done so for years, forever. And

women have done so because of motherhood, like Jacquie.

According to Harvard psychologist, Carol Gilligan’s, definition of female ethics, or “care ethics,”18 women tend to make decisions based on relationships and emotions, rather than on an abstract idea of duty, the basis for most male morality. Motherhood is then the basis for ethical decisions for women like

Jacquie and me. Motherhood is something completely female—and is a joyous thing, but does motherhood hold us captive? It’s never a good idea to make a decision while in the midst of extreme circumstances, but life tends to be full of extreme circumstances. There is no way out and even if there was, we don’t want it.

Jacquie’s wisdom ends the debate, at least for the moment:

“I can’t regret anything. Do I wish I never had the cancer? Absolutely. But

it happened, and I guess it could happen again. If it does, I don’t know what to

expect from Bob or Zach. I don’t really worry about Bob anymore. I just hope

Zach doesn’t adopt his father’s emptiness. I hope I’ve imprinted more traits, but

it’s tough to beat genetics. When it comes to life, cancer, marriage, motherhood,

the best any of us can do is whatever it is we’re capable of.”

*****

18 See Carol Gilligan’s book, In a Different Voice: Psychological Theory of Women’s Development by Harvard University Press (1982). 102

As of August 2006, Jacquie and her husband, Bob, have separated.

Divorce is imminent. The two share custody of son, Zachary. Divorce was one of Jacquie’s biggest fears, and now that it is happening, she is isolating herself—

at least for the time being. Though I’ve a feeling Jacquie will again emerge

victorious, like with the cancer—which has never returned.

Ivy’s Story

The woman you’re about to meet is Ivy, my great‐aunt. Her portrait hangs in my living room. Though she was married twice, she had no children and considered me like a daughter. Ivy had ovarian cancer, first in the seventies, then in the eighties. I was with her in her final days, and though only seventeen, I was already a writer. She asked me to tell her story one day, and that is what I am going to do here. Ivy’s story begins:

She looked ethereal, almost like an angelic vision, lying in the billowy white sheets, wearing an ivory‐silk robe, in the light of her cream‐colored living room as she lay in her hospital bed, a “gift” from a doctor friend. The bed was in the middle of her living room—yes, it was strange to see her dying in the living room, and only added to the surreal nature of her image at that moment. She had been given mere months to live. It was October of 1988, just one month before her sixty‐third birthday.

My uncle, Ivy’s husband, a rough‐around‐the‐edges man though with a

soft heart after years of hard toil, had just placed a gold bracelet and matching necklace on her porcelain skin. The gold seemed to light up her face with an

upward glow that highlighted her chestnut hair and the gold flecks in her hazel eyes—the same eyes that my son has. Her portrait, now hanging in my living room, was painted in the 1960s, before her first diagnosis. Her hair was black against her fair complexion. She also wore gold in the portrait, which had the same effect on her skin and eyes as the jewelry my uncle had placed on her that day in late October 1988. Looking back now, as I gaze at the portrait, it is remarkable how beautiful she looked that day, not much different from the portrait painted over twenty‐years earlier. It is all so vivid in my memory. 104

Ivy was born to Russian immigrants, Rebecca and Max Meisterman, in

Boston, Massachusetts, during the roaring twenties. Max was a brick layer, a

mason. He helped to build some of the buildings still standing in the city of

Boston today. Ivy was the youngest of five siblings. My grandmother, Eva, was

her older sister.

The next several decades would hold great sorrow for the family. When the

stock‐market crashed in the 1930s, Max lost everything. He wasn’t a stock‐

holder, but he did have his life savings in a bank, a bank that lost everything in the stock‐market. His life savings were not much more than three‐hundred dollars, but at the time, it was a great deal of money, especially to the family of seven.

Another decade would pass before Max would die at age forty‐four from an

unknown cancer. According to my grandmother, Max was feeling sick, as if he had a very bad cold. The illness persisted, and finally Max went to the hospital.

The family had no health insurance and could not afford the expense, but Max

was terribly ill. Doctors decided to do some exploratory surgery, and upon

opening Max’s chest, discovered cancer all over the interior on his lungs and

liver. The type of cancer was never revealed, probably because the doctors

didn’t feel the need to find out. Our best guess is that the cancer was most likely

derived from chemicals and dust inhaled on construction sites. At the time,

cancer was a relatively new disease to doctors and hospitals, and Max, being a

poor immigrant who spoke little English, did not receive any special care. Max

died in the hospital, leaving his wife, Rebecca, and five children behind, and penniless. 105

Max had given Rebecca a diamond ring when they married. Rebecca sold

that ring to help support her family. Most of her children were of working age and had factory jobs—the war had begun. World War II provided financial hope for people like Rebecca and her family. Factories opened to make ammunition and other supplies for the war effort, and women were being hired to work, as men were being sent to fight overseas. Rebecca’s two sons were both sent to

Germany. One returned, the other didn’t. Ivy was only sixteen when her brother, Nathan, was sent overseas. Her high school sweetheart, Saul, or Sauly as Ivy called him, had also been drafted. The two married before Saul was deployed. It was not long after when Ivy and her family received letters about their soldiers.

Nathan, or Natie, was killed while helping another soldier. He managed to save his friend from the hail of bullets, but Natie died in the effort. Saul was also killed by enemy fire. He was a gun‐man who volunteered to retrieve a fallen soldier mere feet from the gunners. Saul was successful. He managed to pick up the unconscious soldier and began carrying the man back to safety. However, fate was about to step in for both men. An undetected land mine was placed

close to the gunners. Saul stepped on the mine as he attempted to run himself and the other soldier to safety. Both men were killed instantly. At least, that is what the letter from the army said. It was a double‐blow for a family already thrown into turmoil.

Ivy had to face the unthinkable when her husband was reported dead. She was currently living on an army base in North Carolina, where Sauly had left her before shipping out. Home was seven‐hundred miles away. She was alone, though surrounded by hundreds. 106

Life was good, until it wasn’t—until Sauly’s death. But before his

deployment to Germany, the two lived blissfully together in North Carolina. Ivy

wrote in a letter to her family before Saul was deployed:

We are living in this little farm house; the people next door actually invited me over

to help make head cheese. Can you believe it? Head cheese? And then, can you imagine

me making it? I’m wearing a house dress and I love it! We’re very happy here.

When Saul left for Germany, Ivy had had no prior knowledge of it. He left for the base one morning, as he had done every morning for the previous three months. When he didn’t return home that night, Ivy contacted the base and discovered that Saul had been sent to Germany ten hours earlier. He was gone.

The two never had a chance to say good‐bye. Ivy packed and returned home to

Boston to wait for Saul’s homecoming from the war. The two corresponded regularly. Saul wrote in one of his letters:

I saw a family today, a mother and two children. It made me think of you. One day,

we’ll also have little children of our own—beautiful children, like their mother. Won’t

that be wonderful? I think about our future together and that is what gets me through everyday. I love you.

After two years, Saul was killed. When Ivy received the letter of notification,

she refused to believe it. She continued to write letters to Saul, but all were

eventually sent back. Ivy kept the letters in a shoe box, something her second

husband, Sid, gave to my grandmother after Ivy’s death in April 1989. My grandmother was wary of letting me read the letters. She cried as she handed me one she selected from the box, the only one she ever read. The rest, she says,

is between Ivy and Sauly: 107

They tell me you’re dead, but I don’t believe them. I feel you’re still alive. I feel you,

everyday. Remember when we talked about having children? Well, just like you, I keep

thinking of our future together. I know you’re alive. Please, God, tell me you’re alive.

Write back and tell me it was a mistake. Write back and tell me how much you love me.

I miss you, Sauly. I love you, and, I always will. We never said good‐bye. It’s not right

for me to have to say it alone. Write me, I know you’re there. You’re not dead, please,

just write.

Of course, there was no response to Ivy’s letter. The only response was her unopened, returned correspondence. Saul was dead. Ivy had to move on, but she never fully accepted his death.

*****

Ivy would begin a life of relative solitude. Her heart was forever broken by

the prolonged sadness that the first decades of her early life brought. She would

go on to a factory job, like her sisters, though it was not long before Ivy’s beauty

would send her in another direction.

Ivy had creamy smooth skin, the perfect bisque color. Her high cheekbones

and full lips lit up her eyes when she smiled, hazel eyes with large flecks of gold,

as if someone had applied gold leaf to her very pupils. Though from a poor

home, Ivy had beautiful clothing. My grandmother, her sister, Eva, was a self‐

taught seamstress. And Ivy shined in the clothing Eva would sew for her. She

was noticed everywhere she went. People on the street would think she was a

movie star in her heels and fashionable dress, long, dark locks done up in a sophisticated style, highlighting her Hollywood features. She was noticed by a make‐up sales person in a department store one day. Ivy would soon become well‐known in the Boston area for her work in cosmetics. She sold cosmetics in 108

high‐end stores, but she also had a talent for applying those cosmetics. She did well in her new line of work, but that was only on the outside. The make‐up could not hide her inner sorrow.

Ivy would turn down multiple marriage proposals throughout her twenties,

thirties and forties. She always maintained an impeccable outer appearance with

make‐up, hair, clothing, jewelry, and shoes. She truly did look like a starlet of

old Hollywood. She wore luxurious, long minks, and was always dressed‐up in

heels and a skirt. My favorite Ivy‐outfit was debuted at a holiday meal at my

grandmother’s house in the mid‐1980s. Ivy arrived, fashionably late, arms full of

brightly wrapped gifts for the children, wearing a long white fur that flapped

open to reveal a soft‐gray satin lining. Under her coat, she wore a button‐down

silk blouse of Madeira gold with an open collar revealing a beautiful royal blue

sapphire neckpiece. I wish I could recall the details of the piece. Were they

marquise‐shaped stones? Were there diamonds? I just can’t remember. The

blouse was tucked into a royal blue suede skirt that swept just above her ankles.

The contrast between the gold silk and royal blue suede was aesthetically

stunning. She had nude‐colored stockings on her legs, leading to the exact same

color of royal blue suede pumps, the heels of the shoes studded with royal‐blue‐

colored Swarovski crystals. Her makeup mimicked the colors in her clothing.

Her hair was styled in a short but full cut that took advantage of the curl in her

voluminous, thick hair—an eighties style typical of Sheena Easton and other pop

divas of the time. Her earrings and bracelet matched the neckpiece set in yellow

gold with richly‐hued Kanchanabury sapphires from Thailand, my aunt would

tell me later that night. To me, only about twelve at the time, my aunt was the

ultimate vision of beauty and sophistication. From that moment on, I wanted to

emulate her. 109

In her late forties, she finally married. She had traveled the world alone for

over twenty years, and the loneliness was becoming unbearable. She had told

me once that she wanted to get married and perhaps own a little house on a

quiet street. Her life had been fast‐paced and full, with travel and being a part of

the Boston socialite‐scene. Her apartment in the city had become tiresome. She spent little time there because she hated coming through the door to no one.

Ivy met Sid, her second husband, during her travels. She loved the exotics and so did Sid. The two met on the island of St. Lucia under a waterfall. He had

been married and divorced with two adult children. Sid owned a sign‐making business in Boston, where he had grown up. The two married in a small family‐

ceremony, then moved into a condominium in Chestnut Hill, a wealthy area of

Brookline on the fringes of Boston and Jamaica Plain—very close to Longwood

Avenue, the street of hospitals in Boston.

Though I do not know what my aunt was feeling at the time of her marriage,

I can surmise from the circumstances of her life that it was not a typical, joyous day for her. My grandmother, her sister, fills in the gaps:

“Her life was so hard, alone. She always looked beautiful and tried to be

social, but the death of Saul haunted her forever. The two of them were a gorgeous couple, gorgeous! He, with his blonde hair and big blue eyes, and her, well, you know how beautiful she was. She did her best, but could never commit to another relationship. It scared her. She didn’t want to lose Sauly, I think.

He’s buried near our parents in the cemetery in Everett—his body is not there of course, but we have a stone for him. When we would go, she would wander off to his grave site and kneel, and cry. She always put on a brave face for us, but 110

we knew what she was doing. She was talking to him. They were soul‐mates; she felt like a half‐person without him.”

My grandmother’s description helps me to imagine what my aunt must have

been feeling when she finally decided to marry in her later forties. The long‐time

suffering and fear of further loss was taking a toll, but it must have been even

more heart‐breaking to decide to let that all go.

Ivy seemed happy with Sid. The two continued to travel and were seemingly great companions. Sid would look at Ivy with his large brown eyes, and I could see tears well up in the corners and along the pink line of his lower lashes, even before my aunt was diagnosed. He always seemed on the verge of tears. It sounds cliché but I believe, looking backward, that his tears were tears of joy. He would often take me aside and hand me a fifty‐dollar bill, telling me that it was because I looked so much like her, Ivy. And I do, though I’ve never been mistaken for a Hollywood star.

Ivy would take me places, to lunch, to fancy stores, Newbury Street in

Boston, showing me fine clothing and jewelry. She showed me how to apply

make‐up, how to dress, instilled a love of beautiful things, and also showed me that it was okay to love and buy beautiful things because life was short. She

would say, “You should always do what you love because there is nothing else you can do in this world.”

I’ve often thought about those words since her death in April 1989. I don’t

think she meant follow your passions in the larger sense, but to just fill the gaps

of your life with whatever it was that you loved while you could. In many ways,

I do just that. My aunt was a role model for me. The first person who took me

shopping in a store that wasn’t a Bradlees or Caldor—the Walmart stores of the 111 eighties. She showed me what fine dining meant. She showed me painting and sculpture. She told me stories about exotic locales, and the men who would ask in vain for her hand. One of those men, named Walter, gave my aunt an onyx ring that she gave to me before she died. The ring is a squared‐off, faceted piece of onyx set in gold with a tiny diamond chip delicately placed in the center.

Everything about her, from her tales and experiences, to my family’s reactions, made me feel like she was a special person, special enough to give expensive jewelry to, like the onyx ring. She wasn’t formally educated, but she knew so much from experience. She was that person in my young life who showed me what was beyond my small, limited sphere. I suppose it was from Ivy that I learned to dream big.

Her jewelry was always something spectacular, larger‐than‐life, beyond that of what was in my immediate family circle. After a family dinner party with Ivy in attendance, the topic of conversation for weeks, even months and maybe longer, was her exquisite jewelry suites. She was like a celebrity in our family.

Her entrance was highly anticipated. What would she be wearing? Where had she traveled to? And what would her latest jewelry acquisition be? “Ivy has such beautiful taste,” was a common refrain in my home as I grew up. So, when

I learned of my beloved aunt’s illness, it was a heavy blow to my young mind.

*****

It was in 1986 that Ivy was told after a routine annual exam that her ovarian cancer had returned. Surgery was recommended, followed by chemotherapy.

Ivy put on her game face and proceeded with the recommended treatment, “You have to walk in like a soldier and then walk out like a soldier,” was what she told me then. The surgery was difficult, and because of Ivy’s prior surgery and 112

radiation in the 1970s, Ivy was prone to intestinal blockages, a common side‐

effect from both treatments. After surgery in 1986, Ivy suffered from the same

blockages. She had started her chemotherapy. It was called Cisplatnum and is

still used to treat ovarian cancer today. Ivy lost her hair, but that was the least of

her problems. The chemotherapy only exacerbated her body’s inclination to

develop intestinal blockages. She was hospitalized, and ultimately, released to

go home and die. The doctors felt there was nothing they could do for her. Ivy

was hooked up to a feeding tube. Because she was unable to have a bowel

movement, it was the only way to get any kind of nutrition…but that wasn’t

exactly true.

*****

Beyond the scope of the doctors and day‐nurses that would care for Ivy was

my grandmother. My grandmother is a typical Jewish mother, proficient at all things food. She made Ivy chicken soup, also jokingly referred to as “Jewish

Penicillin.” But it’s no joke.

“We started with just a teaspoon of the soup. I said for her to just swish it

around her mouth if she was afraid to swallow—you know, just for the taste.

You know, Ivy though, she said, ‘I’m not going to swish it around my mouth—

I’m going to swallow!’ And she did. I would bring her more soup every day,

and every day she would eat a little more. After two weeks, she called me one

morning and said, ‘Eva, I’ve had a bowel movement!’ We were so thrilled, and then, we laughed for hours at the thought of being so happy about poop!”

It must have been strange for my glamorous, socialite aunt to go from

fabulous Boston balls to worrying about bowel movements. However, coming 113

from a poor immigrant background, though Ivy enjoyed the good things in life, she never took for granted her place in life. She was still gracious and graceful, but was not above her current circumstances and never pretended to be:

“You can’t help such things. Life is unpredictable and that’s good. You have

to take the good with the bad, or in this case, the bad with the good,” was a piece

of wisdom about dealing with cancer, and bowel blockages, too, that my aunt

imparted to me before she died. I’d almost forgotten she said it, but my

grandmother kindly reminded me as we spoke about her long‐dead sister.

Helping Ivy live those last years is something my grandmother considers to one

of the crowning achievements of her lifetime.

My grandmother would continue to feed Ivy chicken soup, then, pureed

chicken, carrots and celery, and then, actual chicken, carrots and celery, though

cut up very finely. The doctors gave Ivy less than six weeks to live, but two

years later she was very much alive. In her last years, she was able to build

enough strength from my grandmother’s feedings to dress up one last time. Ivy

and Sid attended a Boston socialite wedding in 1987. Ivy was thrilled, though

she knew that it would be her last event. At the time, she never showed those

bittersweet emotions. As I reflect on her, I remember most her regal air, her

command of the visitors in her living room as she lay dying, like a dowager

queen with her loyal subjects. Watching black‐and‐white movie footage of my

aunt from a 1959 family event brought vivid memories of her elegant stature

back in full. The way she held her head, the gaze of her eyes, the flow of her

arms, the swing of her gown as she danced, those are the things I’d forgotten,

now remembered again. 114

The memory of my aunt in ivory silk from that day in October 1988 was just

six months before her death. The cancer had become too aggressive to treat

anymore. My aunt maintained a positive attitude and was able to remain in her

home until a few weeks before her death. Doctors recommended that she be

placed in a care center for terminal patients. Her needs were greater than what a

day‐nurse could provide at home in those final weeks. Sid reluctantly agreed.

After one week, he was heart sick and wanted Ivy home. Ivy wanted to go

home, too, but she wanted to go home to die. She knew the end was near. I

visited her at the care‐center one afternoon and walked in on something I will

never forget as long as I live.

Ivy was in her hospital bed with tubing coming from her arms and from

under the bed sheets. My uncle was lying on top of her, his head on her chest,

arms around her shrunken shoulders. His body heaved and shook as he wept

aloud. Ivy was stroking his head with silent tears glistening on her perfect skin.

The two noticed me only after about sixty seconds. I stood there open‐mouthed

in the doorway, frozen. My uncle turned around and looked at me, still

weeping. My aunt said, “We need to be alone.”

I left, stunned. I didn’t even utter a word and just backed out of the room, closing the door behind me. That was the last time I saw my aunt alive. It was after that moment that I finally knew she was really dying. I didn’t quite understand though and kept thinking, hoping, that my grandmother could whip up some of her magical soup and bring my aunt back to health again. It never happened. One week later, my aunt passed away.

In one of the last visits with my aunt, she asked me to bring paper; she wanted me to record some of her story to tell it one day in a book. Even then, 115

she knew more about me than I knew about myself. I promised her I would do

it. But it was one of those promises you make to the dying, never really

intending to keep it. Well, I’m finally keeping it, though now almost eighteen years later.

The last day I saw my aunt, the day I witnessed my uncle grieving in the

hospital room, I wanted to tell her something. I had found out only the night

before, and I was terrified. She was the first person I thought to tell. It amazes me to think of it now—how very selfish I was then. I wanted to confess to a dying woman so I could feel better, but no, that’s not entirely true. I trusted her

and badly needed her advice. I was pregnant and seventeen, graduating from

high school in less than two months. I never got to tell her about my son, but I

know she somehow knew. I was never sure until my son’s Bar Mitzvah date was

given to me; the dates were randomly generated by the temple based on availability. To my utter surprise, the date given was November 23, 2002—Ivy’s

birthday. My son is named for her—his Hebrew name, Chaim, is the male form of the name Chaya, which was my aunt’s Hebrew name.

Chaim means life. Ivy was full of life and taught me how to live it well through grace, courage and an indomitable spirit. Why die, why not live…on chicken soup and make it to one last dance, wear one more gown, and drink one last toast…to life.

Todah rabbah…v’ani ahavta.19

19 Hebrew for “Thank you…and, I love you.” Alanna’s Story

I thought it important to include not just women with cancer diagnoses but also women who must deal with the diagnosis of a spouse to get the full gist of the female cancer experience. Coming from the view of the patient, I wondered how it was on the other side for women who are not the patient, but the primary care‐ taker. How do such women handle having to care for every detail of family life, and worry about the future?

In America, though most households are two‐income families, men still make higher salaries. What does a woman, who must face long‐term care needs for a spouse with a cancer diagnosis, do? For my husband, as well as for the other spouses of the survivors in the book, money is not a primary concern as the primary earners in a household, but it would be for me if I were not the patient and my husband was. I make at least $20,000 less than my husband and would simply be unable to maintain my home without his income. And it’s not just finances, how does having a heavy burden like that affect the health of a woman in such a position? There were many questions in my mind about this side of the female cancer experience that needed to be explored and this is where Alanna’s story comes in:

Alanna was thirty when her husband, Tim, was diagnosed with thyroid

cancer. It was August 2003, just after Alanna and Tim welcomed their second

child, Benjamin, into the world. The couple had become parents just two years

before with the birth of their first son, Evan. Both were overwhelmed by the

circumstances:

“I really didn’t know what to do; Tim’s family seemed very relaxed about

it, and I was like, ‘Hello? What’s wrong with you people? My husband, your

son and brother, was just diagnosed with cancer….’ It was tough, but we made it

through, at least until we found out that the cancer wasn’t gone.” 117

Alanna and Tim were to endure the terror, confusion and uncertainty of another two and half years of treatment and scans, until finally, in April 2006,

Tim was told his scans were clear.

“This type of thyroid cancer is very treatable—if you can believe it, the

doctor told us it’s the type of cancer you’d want to have. Isn’t it absurd that

there’s such a thing as a cancer a person would want to have? How about none,

thank you very much.”

Alanna uses humor to deflect the pain that has grown since Tim’s

diagnoses. In the role of supporter, Alanna faces many challenges. My husband,

Bob, who supported me during my diagnoses, puts it best:

“It’s hard because all you can really do is watch the person you love suffer. You can make them comfortable, but that’s all. The doctors, usually total

strangers, and the patient, are the only people who seem to be able to act against

the cancer. It’s incredibly frustrating, and also, incredibly frightening.”

Alanna, having felt much the same way, describes her own feelings on being

a spousal supporter:

“Do we have more kids because Tim is sick and might die, or not? Both seemed the right thing to do. It was horrible to consider life without Tim, but that’s what the diagnosis forced me to do. What would life be like? All I kept thinking was that I wanted to preserve as much of Tim as possible—even it meant having a third while still facing cancer.”

In April 2006, Tim’s scan finally showed he was clear of cancer. Only two

days later, he and Alanna learned that their third child died in‐utero at twelve

weeks. Alanna endured two separate procedures to “clean out” the remains. 118

Afterwards, she felt both tired and sad. The moment that had brought her

incredible relief and joy was the same moment she lost their baby. The following

week, Alanna’s grandmother died. Amidst all of this incredible stress, Alanna

developed a blood‐clot in her leg, and this is where Alanna’s story really begins:

“I was nineteen when it first happened. My father, who had divorced my

mom and quickly remarried (you can read between the lines there), had told me

he didn’t want me to come live with him. I had asked him if I could stay with

him while attending school—it was just before my sophomore year in college.

My step‐mother, his wife, told me I was selfish, among other things, and insinuated that my mother had only kept custody of me for the money, that she

and my father didn’t want me there. At nineteen, I was a new adult and naïve. I

was incredibly wounded by this, and naturally, sought my mother for advice.

The moment my mother heard about what happened, she called my father, then,

his new wife, and then, a ten‐year silence between my father and me followed. It

was heartbreaking for me. That was when I was diagnosed with my first blood

clot.”

Much like me, and other women diagnosed with cancer, Alanna suffered a physical result of consistent, constant emotional duress. Alanna’s personality would probably be considered an A‐type of personality—similar to mine. She is focused, self‐directed, competent, creative, and also, internalizes her emotions.

Difficult doesn’t even begin to cover the hardship of having feelings that are not

acknowledged by the people who matter to you most. For Alanna, her father’s

rejection and subsequent siding with his new wife hurt her to her core. This pain

left a space where chaos could and did enter. It’s a pattern repeated throughout

her life, one that has now resulted in a Lupus diagnosis at age thirty‐four. 119

*****

Alanna grew up in a middle‐class suburban home on Long Island, New

York. She attended college for speech therapy at the State University of New

York at New Paltz, where she lived and loved for four years. After the blood clot diagnosis at age nineteen, Alanna lived a relatively healthy life. At the time

(1991), her doctor had told her that young women can sometimes get blood clots, and that Alanna needed to go on birth control pills as a result.

Her doctor’s advice rings incredibly close to my own first encounter with a doctor regarding seizures in 1990, though in Boston, Massachusetts. At age nineteen, I was having focalized seizures in my left arm and leg, but I didn’t know it.

I had just moved into my own apartment and quickly realise I was going to have trouble making rent if I didn’t find a room‐mate. After asking around, a friend referred me to another single mother who we’ll call Christine. At 19, I was a single mom with an infant so wanted someone who would understand the rules of my home and my life. She was older than me, 26, and divorced. Her son was six but lived with his father. Christine was German. She had met her ex‐ husband while he was stationed in Germany with the US Army. They married there, and when his tour was complete, moved back to the States. According to

Christine, her ex‐husband was abusive to her and that was the cause for their

divorce. Because she had no family, she had no where to go and was unable to

provide for her son. It was a sad story and, being 19 and in a position where necessity overruled logic, I believed her. Christine was lying, of course, but I

wouldn’t discover this until about one month after helping her move in. While

helping Christine move in to the apartment, I experienced my first seizure: 120

The car was a hatchback, I forget the make and model, but it was very

small. I had squeezed into the back to maneuver out an awkward chair.

Without warning, I was frozen in place. I felt tremendous internal shaking that zig‐zagged up and down my left arm and leg. I was scared, but knew panic was not an option. The whole thing lasted no more than a few minutes. Christine had come out of the building to continue to unload. I was bent over inside the small trunk area with my arm outstretched against the back window of the hatchback, frozen. Christine said something I couldn’t make out, seemingly unaware of my predicament and continued shuttling various items from her car into the building. During the seizure, I continually attempted to focus my mind

and unlock my body. After the seizure was over, I let my arm relax. Then, I

pushed the chair out of the trunk area, swooping down and around in time to catch it in my arms and carry the furniture up the three flights of stairs to the apartment. After Christine was moved in, I remarked that I had a “weird feeling” while moving. Christine suggested that maybe it was a pinched nerve— it sounded good to me, and, being a single mom with no money and no health insurance, I let the incident go. But I wouldn’t be able to ignore this “weird

feeling” for long.

About two months later, I had my second “weird feeling” while swimming in a pool at a family party. I was holding Gary with both arms, letting him enjoy the freedom of weightlessness in water, when my left arm seized up and froze. The same internal shaking began to zig‐zag up and down my left arm and leg. I supported Gary with my right arm and rode out the seizure. My brother, then only twelve years old, saw what happened. He was also in the pool, just a few feet away. He noticed the terror on my face and asked me what happened. I told him it was a pinched nerve and not to worry about it. 121

But he was worried and told our mother. A few days later, my mother called me

while I was at work. At the time, I was working for a third‐party appraisal firm

in Boston that handled relocations for companies like Xerox, Kodak and Kraft. I

was in the midst of reviewing an appraisal on an old Victorian home when my

mother called. I vividly remember the picture of the yellow clap‐board home

trimmed in white with hunter green shutters tucked on the first page of the

appraisal, the address of the property listed just under the picture.

My mother’s voice was concerned, “Ethan mentioned that you have a

pinched nerve. You should go have it looked at. I can watch the baby when you

go….”

My parents and I were somewhat estranged at this point in my life because of my decision to go through with an unplanned pregnancy, and then, to keep the child. For my mother to call and offer to baby‐sit was extremely unusual. I decided that I couldn’t ignore my “weird feelings” anymore. That afternoon, I called a hospital close to my apartment in the small, South Shore city of

Brockton, and scheduled an appointment with a neurologist there. Our meeting was brief. The short, dark‐haired man in a blue oxford shirt with a navy knit tie, seemed highly distracted as he listened to my description of the pinched nerve while jotting down notes (at least I think they were notes, but really, he could have been doodling on my chart for all I know). He looked up, but not at me, after I finished my description of the two incidents:

“Ms. Schwartz, young women of your age are prone to seizures sometimes.

I recommend we start you on birth control pills and go from there….” He ripped

off a sheet of paper from his clipboard, handed it to me and left the room, his

voice trailing, “Be sure to make a follow‐up appointment at the desk.” 122

Incredible.

As Alanna described her experience in 1991, I fell back against the slatted,

wooden chair I was seated in, paralysed by the memory of what sounded like

another incident of medical incompetence fueled by sexism. Alanna was also

shocked to learn we each experienced the same thing, despite the 500‐mile, one‐

year difference between incidents. We would both learn that we had even more

in common as we continued our interview.

*****

“I met Tim after graduating from New Paltz. He was working on Long

Island; we met through friends. I was sort of rebounding from the man I dated while in college—he was a police officer. Tim and I hit it off right away. I had started a graduate program and was also working full‐time. Things were still tense in my family and I ended up having to move into the city to be closer to work. I was living in this little, dingy place. I hated it. Then, Tim got his job (in western New York) and had to relocate. I was devastated when he left. That’s when I got my second blood clot.”

Alanna is able to trace every significant medical problem in her life to

moments of sustained and intense stress and pressure. This is something that

Dr. Peter Black of Brigham and Women’s Hospital in Boston, Massachusetts, says

is common in the cancer patients he sees:

“Living a good life is important. It is hard to measure the mind‐body

connection; people need to try and live the best life possible. It’s not as easy as it

sounds.” 123

For Alanna’s husband, Tim, it is more difficult to find a pattern. Tim’s sister

was also diagnosed with thyroid cancer—the very same type. She fared better

than Tim with treatment, though Tim is healthy today—he still had to endure

years of treatment before seeing a clear scan. Alanna relates some of the pressures she and the family faced:

“Work is great. Well, it’s good. I just feel like I’m running all the time.

While Tim was sick, it was like we had this big cloud hanging over us. I tried to

keep everything together at home, at work, with family and friends. Laughter

helped, but it was still hard. Most of the time, I just wanted to cry, but couldn’t.

If anything happened to Tim, I needed to be able to maintain the house, my job,

and the ties with family and friends. It’s hard to talk to people about something

like this. If they’ve never experienced cancer, they just kind of look at you like, ‘I

don’t get it,’ through smiles and nods. I feel like people really don’t want to hear

the gory details anyway.”

Luckily, Alanna and Tim have not had to bear the dissolution of friendships

because of their cancer experience, but it is a common effect as shown through

the experiences of women like Stephanie, as well as my own rather unfortunate,

experiences with friends who would prefer to believe I was in Europe than

acknowledge life‐threatening neurosurgery to remove an aggressive brain

tumour.

“People were great; some were better than others. The one thing about cancer is that you definitely know who your friends are.”

***** 124

Alanna sits across from me. We’re in a restaurant as we complete our

interview. The white linen tablecloth is littered with plates and silverware, her steak salad is half‐way gone; my black truffle macaroni and cheese is barely touched. I continuously write on the yellow legal pad while servers float around

us, refilling our glasses, placing delicate paper menus in front of us for coffee

selections. The lights are dimmed in the restaurant for dinner. The silk

aubergine curtains that form a backdrop behind us glow and flow in the wind

swept up by the swift movement of the wait‐staff and other diners moving in

and out of tables, or, to the bathrooms in the back. Frank Sinatra sings above us,

“Strangers in the night, exchanging glances….” But we don’t feel like strangers.

We feel intimate, our friendship cementing over foamy café lattes: mine is decaf

with skim milk.

*****

Alanna and Tim live in a suburb of western New York, the place where Tim

relocated in 1997 when Alanna was diagnosed with her second blood clot. Now,

in 2006, Alanna faces her third diagnosis of a blood clot. All the blood clots have

been in her leg. Tim is well at last, but Alanna, under the years of stress from

Tim’s cancer diagnosis, is now having her own medical crisis.

“I’m going to a rheumatologist in New York City. No one can seem to give

me a definitive answer on what is going on. Apparently, blood clots can be a

symptom of Lupus…good times,” Alanna says wryly with her typical sarcasm,

unveiling truth through humor again.

“I really, really wanted to keep trying for a third. The cancer is gone, and even if it comes back, the doctor says that it’s treatable. Tim isn’t going to die,” 125

she pauses, takes a sip of her coffee and continues, “I just need someone to tell me if I can have another baby, safely.”

Once again, my experience parallels Alanna’s:

After my husband, Bob, and I married, we hoped to build our family. At

that point, in 1993, I’d already been diagnosed with a brain tumour and had gone

through surgery and radiation. I wanted a definitive answer on whether or not a

pregnancy would affect my now‐gone cancer. No one would, or perhaps even could, give me a straight answer. Today, I know why. Harvard did a study that

I read in 2003, two years after my recurrence. In the study, researchers found

that a small percentage of women (approximately one percent) of child‐bearing

age would develop an Astrocytoma, the same tumour I was diagnosed with in

1991, during or just after pregnancy. My first signs of the brain tumour occurred

in 1990, the “weird feeling” or pinched nerve, that manifested when Gary was six

months old. Bob and I struggled with the decision. We wanted to build our

family, as any new couple does. But the risks were too great, even without any definitive answers from doctors. We attempted adoption in 1997, after making a final decision that it was too risky for me to carry another child. I was still on seizure medication, which could also cause birth defects to the fetus. We felt as though our desire to have children was selfish. We already had Gary, whom Bob adopted. In many ways, the struggle was my own, as Alanna’s struggle is hers:

“I feel guilty. Tim is finally well. We can finally have a pregnancy without

fear or worry, and now, I’m not healthy. It’s so unfair.”

I felt guilty, too. It seems silly to me now to have wasted so much time and

energy on something like that. Bob loves Gary as much as any father loves his

son, sometimes more, I think. Bob is a better father than most simply because he 126

does not take for granted what most parents do, a biological connection. Parents

tend to rest on biological laurels too often. Just because a child shares

chromosomes with a mother and father does not mean that child has to relate to

either parent. Like any relationship, a parent‐child relationship takes

tremendous work. Bob has never faltered at being diligent concerning Gary and

their relationship. It started when I was first diagnosed in 1991.

Bob and I were not yet married, and had only just started dating three months before my surgery to remove the tumour. I was living in Boston; Bob was five‐hundred miles away living in western New York. He took a week off of

work and stayed at my home to care for Gary while I was in the hospital. I had

the surgery on a Monday and was released on a Wednesday. Bob brought Gary

to the hospital everyday; he brought me home when I was released, cooked

meals, entertained Gary, cleaned, bathed and dressed him properly (Gary hated

changes in season and struggled relentlessly against putting on pants and jackets

in fall after a summer of less clothing; my surgery in 1991 took place in fall…)—

but more importantly, Bob was there. He even helped me through the difficult

task of telling Gary about my cancer—not an easy feat when talking to a toddler.

Alanna and Tim also struggled with how to tell their young children about Tim’s

cancer, and now, Alanna’s health issues:

“I told Evan that Daddy had a boo‐boo. Tim had a bandage on his neck after

surgery. We had told Evan that Daddy had a business trip. Tim came home

wearing a T‐shirt Evan and I had made for Tim that Father’s Day. Evan’s a

sensitive kid so we didn’t want to burden him with that kind of thing. Ben was

too little to talk to—just a baby. 127

Evan was really disturbed to see the bandage on Tim’s neck. Tim was

unable to play with Evan after coming back from surgery and that’s when Evan knew something was up. Ever since, Evan becomes sullen on Father’s Day. I think it has to do with the T‐shirt. He’s old enough to know now, but we still haven’t told him. We’re waiting for him to ask.”

I disagree with Alanna’s approach, but understand her instincts. It is an

impossible task to convey to your children with confidence that though a parent

is very sick, everything will be okay. Stephanie also struggled with this aspect of

her illness, as did I. Alanna hasn’t told Evan or Ben about her own illness,

though both know that she is sometimes unable to play them because she has “a

headache.”

Jarrod Goldstein, a therapist who works with traumatized youth in Daytona

Beach, Florida, suggests that parents be as honest as possible with children, “It is

hard, more often for the parent than for the child, to discuss trauma. Everyone

must do what is best for their individual child, but honesty is usually the best

policy, just be sure to speak to your child at the appropriate level (for your

child’s age).”

Alanna confesses that she’s afraid Evan will not trust her if he finds out about Tim’s cancer. She feels that Evan may not fully understand what has happened to Tim over the last several years, but that he does understand that

Daddy was not actually going on business trips whenever he would go into the hospital for cancer treatments. For Alanna, it is clear that her role as supporter has been exhausting. The fear, anxiety, and loss of control wear down both patient and primary supporter. 128

“I’m just so tired. We’ve had so many losses lately. I made a recent decision

to step out of my full‐time role at work, and requested a part‐time position. Life is short.

“I’m a mess. I need to rest, but more importantly, I need to spend time with

my kids. I need to spend time with Tim. After working a full day, I barely have

time to sit down before it’s off to bed, and then, another full day. Weekends

aren’t really weekends. We’re either cleaning, or doing yard work—fixing the

house, grocery shopping, maybe we’ll get together once in awhile with friends,

but it’s hard. Both Tim and I work full time; I just feel like everything is a little too out of control. I need to stop working, but we can’t afford that. I like working, it’s not that—I’m just exhausted from…everything.”

As Alanna puts down her over‐sized white porcelain coffee cup and sighs,

foamy drips of brown coffee, once dried, wash away with new foamy spill‐over.

She looks tired. Her eyes are heavy, wrinkles have started to form and crease the

thin, sensitive skin below the lashes. She is young, younger than me, but shows

gray in her dark hair. Her easy smile lights up her face, but our conversation has

taken a toll, and so has a life lived with cancer:

“I’ve gained weight. I figure, I’ll eat some chocolate—I deserve it. It’s

impossible to find time to work out. My work out is going grocery shopping. I

know, I know—I’m using food as therapy, but I figure it’s better than shopping…though I do shop a bit too much also. What can you do!” Alanna

says with finality. It’s not a question. It’s an exclamation. The statement is her

current solution to the cancer problem.

What can you do? The answer is not easy. There is nothing you can do when

cancer has entered your life. Is it depressing? Hell, yes. Is it scary? You betcha! 129

Will it get better? Maybe. With recent technology and improved research, most

cancers can be treated with moderate success. There’s never a guarantee that

cancer won’t return. In fact, most cancer can. So, what’s the good news? The

good news is that you’re alive to read this. The good news is that you have the opportunity to reflect, to ask those philosophical questions you should ponder but don’t because you’re too busy going to work, dropping off children at school, driving to soccer practice or play dates, grocery shopping, cleaning, making house repairs—doing the things we all have to do to survive, but survival is not enough. To survive and thrive, that is what we all wish for. Cancer doesn’t

improve your chances at a better quantity of life, but it is possible for cancer to push you towards a better quality of life. It seems backwards, and it is—but

what’s wrong with backwards?

*****

Tim’s cancer, thyroid cancer, can be either familial or occur from environmental DNA damage.20 According to the National Cancer Institute21 275

men and 268,149 women in the United States have a history of thyroid cancer. In

2006, 30,180 men will be diagnosed with thyroid cancer; 1,500 men and women die from thyroid cancer each year. Though the statistics would seem to indicate

a high survival rate, the variables that aren’t talked about involve how many of those diagnosed go through years and years of treatment, like Tim did; how many of those individuals who do not die in a given year, survive another five?

Another ten? Statistics can be tricky but are valuable in showing the prevalence

of the cancer itself, if not accurately showing all the details of having the disease.

20 See American Cancer Society—www.cancer.org 21 see www.seer.cancer.gov 130

Thyroid cancer affects more women than men.

*****

The Lupus Foundation of America estimates that there are 1,500,000 cases of

Lupus in the United States; 16,000 Americans are diagnosed with Lupus each

year. Ninety percent of the individuals with Lupus are female; eighty percent of

those developed Lupus between the ages of fifteen and forty‐five.22

Lupus is an autoimmune disease where the body turns against its own

tissues through a variety of means, like rheumatoid arthritis. There is no current

cure for Lupus. Though the disease can be treated with medication, the side‐

effects from medication are acute and can cause fatalities. Most people with

Lupus can live with the disease; it is not typically an immediate killer, though it

does make living a full life very difficult.

*****

Since our interview in summer 2006, Alanna has decided to pursue her

dream of having a third child:

“If I don’t do it now, when? We know, all too well, that life is short. Life

doesn’t wait for you, you shouldn’t wait for it.”

And on December 24, 2006, Alanna proudly announced that she was three months pregnant with her third son.

22 See Lupus Foundation of America—www.lupus.org 131

Joan’s Story

“For three weeks, I sat in my house and did nothing. Then I said to

myself, ‘This is stupid; if I’m going to die, I need to live!’” says Joan about her initial reaction after her Melanoma diagnosis in 1995.

Joan has been a good friend for many years. We met through our children

who attended the same school and played on the same sports teams. Joan and

her husband, Ken, even helped during my 2001 brain tumour diagnosis,

installing a double railing in my two‐story home so I could access the upstairs

where my bedroom is, as well as the only full‐bath in our home. As long as I can

remember, Joan has always made efforts to stay out of the sun. Joan told me

about her Melanoma years ago, but she never made a big deal about it. I didn’t

realise how serious Melanoma was until my own diagnosis in January 2005.

Melanoma begins in darker‐pigmented skin, like moles or freckles.

Typical treatment is surgical removal of the affected‐area as well as the

surrounding areas up to three centimeters. Sounds simple, doesn’t it? The

problem with Melanoma is that once it hits the blood stream, it can then manifest

in the liver, lymph system or lungs. Radiation and chemotherapy do not work

well on Melanoma. Once Melanoma spreads, there is no stopping it. Melanoma

is one of the deadliest cancers and is on the rise as the number one cancer among

Americans ages 20 to 30, and is also the number one cause of cancer death in

Australia.

“Any little freckle, anything at all, and I have it removed right away,”

Joan says during our 2005 interview about her cancer experience. Joan looks

down at the floor, then up, moving her head and eyes upward to the ceiling, 132

“But you don’t want to hear about that shit,” she says, and I can’t help but laugh

at her abrupt vulgarity. Joan is infamous for her use of foul language. She’s a

fighter and she’s fighting, even now.

“I do want to hear about it…all of it. It makes sense to have anything

suspicious removed,” I respond, trying to make Joan feel more comfortable in the

conversation.

“No. Not just anything suspicious—everything. I feel unsafe if a new freckle or mole appears and have it taken off as soon as possible. Health

insurance only pays for five removals a year, but I don’t give a shit—this is my life!” Joan declares, her dark eyes becoming larger with the zealousness of her expression.

According to Joan, she was on a cruise in February 1995 with her family when a dark spot appeared on her buttocks. This same area was used by Joan’s

doctors for steroid shots during her earlier pregnancies—Joan is the mother of

four children and also experienced four miscarriages.

“It always happens in a weak spot,” she says fidgeting with her brightly painted acrylic nails, “I knew those damn doctors didn’t know what they were doing!”

“What do you mean?” I asked, intrigued by Joan’s comment.

“You know, like with your cancer, it always happens when you’re under stress,” and Joan looks at me with a twinkle in her eyes and an impish grin, “But

don’t worry, you’ll be around for a long time. Jesus doesn’t want you until you

accept him as your savior.” 133

Joan is a devout Catholic and loves to tease me because I am not. Joan

fights for every cause she feels strongly about—even for lost ones, like me. We laugh and continue with our conversation for a bit. Joan is not sitting; she is full

of energy and flits about her oak country kitchen while we talk.

Ken, Joan’s husband, remodeled the kitchen. Though he is not a carpenter

by trade, Ken studied with his carpenter‐father to learn the art and craft of

carpentry. It shows in the kitchen. Even the counter tops are oak, finely sanded

and highly polished with a thick, glossy layer of polyurethane to protect the beautiful wood. The cabinets are a simple style, also oak. The floor is wide‐ beam planks of red oak that gives the room an added warmth and charm with an

antique flair. Joan loves antiques and the dining set in the kitchen includes spindle chairs, also made of oak, paired with a heavy oval table‐top and a thick,

substantial pedestal for a base. Joan used nineteenth century‐style stenciled

prints in burgundy and hunter green on the wall to coordinate with the green ivy

theme in the kitchen. It is a room where Joan’s family gathers for meals, and a

source of pride for both Ken and Joan.

Joan speaks with a heavy New York accent, having grown up on Long

Island and also living in the New York City area during her early adulthood.

She moved to Rochester with her first husband, Jim. In Rochester, Jim and Joan

had two daughters, Tiffany and Michelle, but then, Joan divorced Jim after ten years of marriage. Joan, always as fighter, decided to return to college and get her degree—especially now that she was to support her family as a single parent.

While taking a business course at St. John Fisher College, she met Ken. The two

fell in love and married. Over the last seventeen years, Joan and Ken have built a comfortable life together with Joan’s two daughters, now adults, and two younger sons, Orin and Kenny. 134

I had never met anyone like Joan before. The word “tough” does not even

begin to describe her. Joan is physically quite striking with flawless, almost

porcelain‐like skin, dark eyes, and a huge smile that reveals perfect, and natural,

white teeth. She is slim and dresses in youthful clothing—the other day she was

in a tank top covered by a long sleeved unbuttoned white and blue pinstriped

shirt (a staple with Joan, who never exposes her skin to the sun) and crop style

jeans with side shearing and Converse low‐top sneakers. Her dark hair is styled

in a short, punky cut that gives Joan an even younger appearance. Joan will not

tell me her exact age, but her oldest daughter, Tiffany, is in her early 30’s and

Joan had Tiffany when Joan was 21. Joan is in her early 50’s, though such a fact

could only be determined through mathematics as Joan physically looks much,

much younger. Even Joan’s attitude is youthful. She is always laughing and

smiling and loves practical jokes.

At a pool party hosted by Joan several years ago, Joan started squirting whipped cream at everyone in her immediate vicinity. It was quite a food fight; retaliatory attempts took place, and there was whipped cream all over her prized kitchen, and Joan. But Joan didn’t care about the mess, she laughed as she started to clean it up, saying to me, “I knew I’d get you to laugh.” Apparently, the whole thing was staged to cheer me up—it was during my final chemotherapy treatments in 2002 when I was not smiling too much.

Joan is unpredictable. She says what she wants. She can be abrupt, even

rude at times. She doesn’t take any “shit,” as Joan would say, from anyone. And

at the same time, Joan is the most caring, loving and loyal friend. Despite her

constant chagrin at my refusal to accept Jesus as my savior, she is always there.

Not just for me, but for my family as well. It’s hard for me to imagine Joan, such

as she is, hiding in her house for three weeks. But cancer can do that. It humbles 135

you. To realise you can’t fight everything, especially for someone like Joan, is

quite a blow:

“I couldn’t get out of bed. I was terrified by what was happening. I kept

asking, praying, ‘Why me?’ but would never get an answer. Kenny was a baby and Orin was in kindergarten. The girls were older, but still…I didn’t have time for this. But it was here and it frustrated the hell out of me that I couldn’t do anything about it,” Joan recalls.

As Joan speaks, she is in constant motion. Her hands are wringing a napkin

from the table. Her eyes are darting from me, to the table, to the floor, and back

again. She does not want to talk about this.

“Do you think the cancer changed you?” I ask, though I know the answer.

“Yes! Life is too short to put up with other people’s shit—I don’t care!”

Joan exclaims as she sees my disapproving expression at her unnecessary use of expletives, “I can’t do that anymore…I have enough to worry about without dealing with other people’s problems,” though she does not mean this.

Joan, whose own parents passed away years ago, helps Ken’s ailing parents,

“mom and dad,” all the time. She will drive to their home, located more than an

hour away, to help with groceries, doctor appointments, even household tasks.

She makes efforts to see that “mom and dad” are included in family life,

frequently taking Orin and Kenny to see their grandparents, despite busy school

and sports schedules. She and Ken are even saving money to help purchase a

new one‐level home for “mom and dad” nearby, so she can help them even

more: 136

“I just can’t stand these petty people who don’t understand,” Joan continues, she is determined to complete this thought, “No one understands until they get sick, too. My cancer wasn’t even as bad as yours, but it was still terrifying,” and she stops.

We stop the interview for now. Joan hops up and skips up the stairs, yelling

behind her, “I have to get ready to pick up Kenny; we can talk more (about this)

later.”

Time for me to go.

Joan, like the other women in the book, is a hero. She completed her cancer journey ten years ago, but the incredible emotions derived during that

journey are so strong that my strong friend, Joan, is still reeling—even a decade later.

*****

Joan saw her dermatologist after the 1995 cruise: “I had a dream when we

got back; it was my father. He told me I had to look in the mirror and had turned

around, like he was showing me something. The next morning, after my shower,

I looked in the mirror and turned like my father had in my dream. I had a black

spot on my ass!” Joan declares, as if newly surprised, though the story is ten

years old.

“My father told me about the cancer. I had it removed right away and the

pathology showed Melanoma. We scheduled removal of the surrounding area

with a plastic surgeon. I don’t care that it was on my ass—who wants scars?!?!”

Joan exclaims. 137

Even still, I cannot picture this fiery woman before me, a woman I’ve seen

take on burly‐looking hockey coaches, sitting in her home in bed for three weeks.

So I ask her directly, “What were your days like during those three weeks after

the initial diagnosis?”

At first, she looks at me as if to say, ‘I’m going to kill you for asking me that,’ then she begins:

“I felt like my life was over; my body was failing me. I wanted so badly to

find a reason why it was happening to me. After all the shit I went through with

Jim—I felt like my life had just started again, and then being diagnosed with skin

cancer? I was beside myself.” Joan stops there.

Still fidgeting with her nails, she gets up and starts shuffling through some papers on a nearby desk in the kitchen, “It was hard,” she says after a few minutes, “All I wanted to do was lay in bed; I did nothing. Finally, I got pissed and that’s when I got up again. Why it was happening—I couldn’t even begin to know…but what I did know was that time was shorter now, and I was not going to sit on my ass and wait for death—to hell with that!” Joan laughs.

Her smile lights up her face and spreads into the room, making the

inanimate objects around her suddenly seem touched with light.

“This is why you won, Joan,” I say quietly.

“I know,” and she smiles then turns to the dog, “Want to go out, Molly?

C’mon, Mommy will let you outside,” and she leaves the kitchen, following the

plank wood flooring down a narrow hallway to the screen door, letting her

Wheaten Terrier, Molly, out into the yard. 138

I understand that for Joan, my Joan, who cannot sit still and is yet still haunted by her experience with cancer, letting Molly out was her way out of the conversation.

*****

There is no question that cancer is an ego‐shattering experience. We have

the illusion of control; we believe we have free‐will to make, or not make, all

decisions. But cancer is where such logic ends. No one chooses cancer—it just

happens to you; you have no choice, no free will. The very fact that cancer can and will occur whenever it wants, to whomever it wants, is terrifying. All that we hold dear as reality is soon revealed to be no more than illusion. Reality is not what we believe it to be, which means we are not what we believe to be either—hence the shattering of the ego. Joan’s path was already difficult, strung with loss through the death of her parents then the devastation of divorce, and still finding the energy and strength to rebuild all she had lost and come out from beneath the shadow of abandonment. Joan had relied on the mercy of her father, God. But where was God in all of this cancer mess? Why had God allowed this to happen to her? Everything Joan believed in dissolved before her very eyes with her cancer diagnosis. She was left with nothing.

I would have stayed in bed for three weeks, too.

Joan managed to abandon her ego at the end of her three‐week depression.

Joan’s acceptance that she could not control the situation, leaving her ego behind

and using her faith to pave the road ahead, helped her to successfully complete her cancer trial by rejoining her present family. Joan said she had gotten

“pissed” and that is what helped her come out of the darkness. Anger is an 139

excellent motivator. Joan had to explore the probing questions on God’s

whereabouts. Joan reasoned that her experience was a lesson from God helping

her gain perspective for a deeper appreciation of life. For me, Joan’s experience

means much more.

Joan’s chapter is shorter than any other. This is because Joan’s cancer

experience is limited, but the meaning of that experience is certainly not. When I

attempted to ask Joan about her thoughts on a recurrence, she declined to

answer. This was perfect—perfectly Joan. Why answer a question you do not

have the answer to? I have to admit, I don’t want to think of recurrence either.

A recurrence of Melanoma is not something you live through. It’s something

akin to the villain in the Harry Potter series by author J.K. Rowling referred to as

“the one who shall not be named.” A deadly foe, even if absent, still has a

terrifying hold on the victim’s heart. But this is why Joan is heroic. She lives life

under layers of sun‐protection and specially‐treated SPF clothing, but she lives.

She seizes each moment of each day. I have never witnessed anyone so possessed with life, so driven to live every single second to the fullest.

Joan’s youngest child, Kenny, is a hockey player. For Joan, giving her

children everything she has is the most fulfilling thing she can do with her time

on earth. Kenny has been playing hockey since he began to show interest at the

age of seven. Joan immediately signed him up for a team and as Kenny became

more adept at the game, Joan continued to support Kenny’s interest by signing

him up for travel teams. Let me now explain what this means:

Travel hockey is an extracurricular activity where a group of children play

an inordinate number of hockey games, up to fifty in a season, and travel all over

the county, state, even to other states or countries, to play. Travel hockey teams 140

are not publicly endowed, supported by schools, or government funding. Travel

teams are solely supported by the families who participate. This includes purchasing of expensive equipment, uniforms, ice‐time, and of course, travel expenses. At this moment in time (2006), gasoline prices are extraordinarily high. Parents who participate in travel hockey, like Joan, are paying for trips that may be hundreds of miles from home, thereby hundreds of dollars in fuel costs alone, and then there is the cost of hotels and meals as well. Joan is not rich. She stays home to tend to her house and family. Her husband, Ken, is an accountant.

The family lives on a single income in a modest home on a busy main road in a suburb of western New York. They do not take fancy vacations, loading the family in an RV and driving to a location, usually somewhere in Canada, where

Kenny can benefit from a hockey camp or meet a hockey coach to work on technique. Joan has an older son, Orin. Orin is not left out here—Joan is equally intense with Orin’s interests as well.

Orin enjoys crew club. He started rowing a year ago after choosing to leave

hockey and baseball. Orin travels with crew club, too. Joan purchases his

equipment and other crew materials privately. She pays for lessons and private‐

time at the local boathouse for Orin to get more practice. Joan invested in a

sports psychologist for both Orin and Kenny to help the boys learn how to deal

with the sports culture more effectively. These sports and related events are not

merely after school activities; for Joan, it is her very life. And she spends much

of her life shuttling both Kenny and Orin to their various games, lessons, and

appointments. We are talking about serious commitment, or are we?

Joan, as is apparent from her 2005 interview, is an extreme personality.

When she laughs, it’s with everything she has; when she cries, it’s equally

intense. Joan’s transformation of consciousness from her cancer experience has 141

helped mold her intensity. It’s not enough to just live and get through each day;

Joan must live, must do, must mother, with ultimate gusto. It’s almost with wild

abandon that Joan embraces everything important in her life—mainly her

children. She is equally intense with friends, loyal to a fault. Joan is an

amazingly courageous woman and yet, I have seen this all before.

During my first decade as a survivor, I also embraced motherhood with equal intensity. It’s really all you can do to survive the psychological damage wreaked upon the fragile human mind. By throwing yourself into family, or

work, or whatever your passion may be, you lose yourself and the ever‐present fear of death that hovers like a dark rain cloud about to burst. Will lightening strike you? No, how can it? I’m moving too fast…it’s basically avoidance.

There is no fault in this action, but the transformation of consciousness is not

complete, nor should it be. It is part of the human life cycle. The human mind

experiences constant evolution. However, so does the cancer inside of us. The question is whether or not we ourselves can achieve a sense of enlightenment

before the next battle begins, a battle that ultimately ends when we do. To be, or

not to be, that is the question—Shakespeare was quite correct in his ultimate

drama, Hamlet, whose hero falls to his death after several searing trials, only

glimpsing a transformation of consciousness before closing his eyes on the world

forever, leaving his best friend, Horatio, the first CSI detective, to tell the tale.

Joan is living her life well. Despite her fears, she smiles, she laughs. Her

courage and strength are apparent every day, reaffirmed by helping her family

with every ounce of energy she possesses. Though Joan felt she was “unworthy”

of being included in the volume because she did not suffer through chemotherapy and radiation, her struggle with her own experience is incredibly 142

valuable. Her illness narrative shows that a cancer diagnosis, no matter how big

or how small, greatly affects everyone. In the midst of living a full life you are told, unequivocally and with little room for negotiation, that you will suffer greatly, perhaps so much so, that your life may end. Faith in God is not always

enough. You must also have faith in yourself.

*****

Dr. Brett Shulman, a dermatologist and skin surgeon in western New York, feels that Melanoma will quickly become the number one cancer killer in the

States, as in Australia. “People take the sun for granted. The sun’s rays are much

stronger today than twenty years ago. That’s part of the reason why Melanoma

has increased in the last twenty years. Also, ignorance about what Melanoma is

and how it’s treated can be a factor. A full body check by a dermatologist is

imperative every year. Removal involves cutting away the lesion with this,” and

he holds up what looks like a tiny, stainless steel post‐digger, something I’m

already too familiar with.

“Melanoma is probably one of the deadliest of all cancers, but if caught early

enough, can be cured by removal alone. There is current research for alternative

treatments to Melanoma metastases, but it’s still in the experimental phase.”

Dr. Shulman provides me with literature on Melanoma from the American

Cancer Society. The pamphlet states that there is a 1/3000 chance of developing

Melanoma in typical, or ordinary, moles. However, there is a 1/100 chance that

Melanoma will develop in atypical moles. Thirty percent of Melanoma cases develop in pre‐existing moles; 60% of Melanoma cases develop on clear skin. 143

Melanoma is also known to develop in the eyes, mucous membranes, and under

finger‐ and toe‐ nails.

“Typical moles will be round or oval shaped with a uniform, brown color,

less than a quarter of an inch wide, with sharp and even borders. An atypical

mole will have an irregular shape with fuzzy, uneven borders and two or more shades of red or brown, and are also more than a quarter of an inch wide.

Melanoma is the deadliest form of skin cancer. People need to be vigilant about

getting checked. It’s estimated that everyone living in Australia will be

diagnosed with Melanoma in their lifetime. We’re on the same road here in the

States, too,” says Shulman.

Brett Shulman oversees research trials for skin cancer. He attends national conferences in the States, and has spoken about the disease on radio and television, writing multiple articles on the subject for newspapers and magazines. In short, Dr. Shulman is an expert. He also says that being in the sun is necessary for good health:

“It is necessary for people to be in the sun. The sun helps the body to manufacture Vitamin D, a steroid hormone that can prevent rheumatoid arthritis, Multiple Sclerosis and osteoporosis. However, and this is a big however, that doesn’t mean you should be in the sun, unprotected, for hours.

Fifteen minutes with a good sun block each day should do it for most; it can take

longer if there is more melanin in your skin. I’m not advocating prolonged sun exposure. Even in your car, through your windshield or other windows, even through clothing, you can be exposed to ultraviolet rays. A diagnosis of

Melanoma is serious, but you can’t, and shouldn’t, hide from the sun.” 144

Dr. Shulman’s parting advice is of particular interest in Joan’s case. Joan,

having stayed vigilantly out of the sun for over a decade, has had trouble with rheumatoid arthritis and has also developed the early stages of osteoporosis:

“I just can’t believe it. I stay out of the sun so I don’t die, and then, this

happens,” says Joan in disgust regarding her arthritis and early osteoporosis

diagnoses. “At one point, several years ago, I thought I might have gotten Lupus.

After lots of tests and doctor appointments, and then, with the recent

osteoporosis, they finally put the pieces together. It’s just not fair, but nothing

is.”

Joan experienced a serious back injury after a camping trip with her family

in 2005. After weeks of pain, Joan realised that the problem was more than just sleeping on a bad mattress. Joan is upbeat and proactive, taking calcium supplements, medication and doing everything in her power to meet these new health challenges head on.

What is happening to Joan is a relatively new phenomenon that many

hospitals all over the world are encountering. Mary Ann Dever, the director of

patient funding at Strong Hospital in Rochester, New York says that dealing with

the problems of cancer survivorship is a relatively new but welcome issue in

hospital culture:

“While more people are being diagnosed with different cancers every year, less of them are dying because of advanced research and treatment. But survival leads to a host of other health problems, usually stemming from treatment of the

cancer. We are working to develop more programs and awareness about issues of survival. It’s a good problem to have, but it’s still very difficult (for the patient).” 145

I can relate to this problem. As a 16‐year survivor, I’ve dealt with weight‐ gain, Diabetes, paralysis, infections, and a number of ongoing health issues related to my cancer treatments throughout the years. The frightening part in light of all these ongoing health issues for me, at only age 35, is looking forward.

As I age, and I hope I do, what will happen to me? Good health becomes harder

to maintain as we age. Our metabolism slows, our hormones change, our muscle

begins to diminish—so what about people who are heading into their senior

years with less than full health? What about people like me, and Joan, who are

looking at pre‐existing health issues that will only compound and become worse

with age?

Good questions. Only time will reveal the answers. As Dever suggests, it is

a good problem to have, however difficult.

*****

“I’m not perfect. I wish I spent more time with Ken. But I need to keep

going with the kids—they’re my life. And now, with my new grandbaby, Rocco,

life means something more. God works in mysterious ways, Rebecca. We know

each other for a reason,” says Joan resolutely, sitting in the orange‐vinyl booth,

her red nails clicking on the melamine, faux‐wood table‐top at the coffee shop.

She flashes me a big smile before reaching for the cup of coffee while baby Rocco,

with the same eyes and cleft chin as Joan, coos in his highchair, playing with

plastic multi‐colored rings.

“You girls want anything else?” interrupts the waitress, holding a glass

coffee carafe.

“No,” says Joan, “We’re perfect.” 146

Maxene’s Story

“Cancer isn’t a death sentence, it’s a turning point. My life has changed for the better. Nothing scares me anymore.”

Maxene was diagnosed in 1996 with stage I non‐Hodgkins Lymphoma, a cancer that travels through the lymph system and therefore may manifest in any part of the body. She suffered a recurrence in late 2001, but the cancer evolved from the lower level of malignancy to a stage III. There are only four stages of cancer. The fourth stage is the last because the cancer will then typically metastasize, or spread to other areas of the body, as mentioned in earlier chapters. Though many people may live years after being diagnosed with stage

IV cancer, for most of us, it would mean the end of the line.

“After the first diagnosis in 1996, I felt like I wanted to live my life to the very fullest. I wanted a family and children, and nothing was going to stop me.”

Maxene is a self‐described fighter. She is proactive and doesn’t shy away from a challenge, something her family has understood about her for years.

Maxene grew up in a first‐generation, Russian‐immigrant family. Her father was born in America, but his parents were not. They were from a small village on the Russia‐Poland border and immigrated to America in the early

1900s. The family was educated, but not formally. Maxene’s father, Morris, spoke three languages and was an avid reader. He worked as both a taxi driver

and a real‐estate salesman to make ends meet. Maxene’s mother, Bertha, was

also a first‐generation American from a Russian‐immigrant family. Bertha was a

homemaker, caring for her four children and their small family home in 147

Brookline, a suburb of Boston in Massachusetts. Maxene and her three siblings

enjoyed close family ties with both immediate and extended family alike. No one

in the family had ever left the relatively limited area of Boston. Not an aunt, a

cousin, no one. Maxene, however, was not a home‐body. She felt compelled to see the world, to experience everything it had to offer. After college, she spent time in Europe, Russia, and even traveled to Australia. In fact, Australia is where Maxene chose to make her home for over a decade before returning to

Boston in the early 1990s.

Maxene was a teacher—special education and reading. She helped

students who did not fit the typical mold to learn how to read and write. This was also her job in Australia. She lived in New South Wales, a state‐region of

Australia that includes Sydney, where the famous Opera House lives. From her harbour‐side apartment she could see the Pacific Ocean, an expanse of wide, azure waves blowing in the Australian head winds everyday. Ferry boats and water taxis would sometimes cross her view, but for the most part, the view was all open sea. She loved it there, in Australia. But Australia is halfway around the world from her close family in Boston. Her parents visited Sydney once, but

being older and retired, had difficulty with the expense and long flight to

Australia from the northeastern coast of the States. Life in Australia was like a dream of paradise to Maxene, with temperate weather, never very far from the ocean, and tremendous sunshine almost daily, even in the middle of winter! Yet paradise can take a toll when the heart yearns for the comfort and familiarity of home. 148

Passion

Maxene returned to Massachusetts for five years. She taught at a private

school in Marblehead, a coastal upper‐middle class town just north of Boston.

Marblehead, like Sydney, is built on the coast. Maxene could see the ocean

everyday again. Things were good; Maxene was able to reconnect with family, a

part of her life that she sorely missed while in Sydney. But in 1996, only five

years after returning to Massachusetts, Maxene was diagnosed with non‐

Hodgkins lymphoma. Non‐Hodgkins lymphoma, or NHL, is more

unpredictable than Hodgkins lymphoma, first discovered in 1832 by Dr. Thomas

Hodgkins. Because NHL is less predictable, it’s harder to treat. According to the

American Cancer Society, 50,000 people are diagnosed with NHL each year in

the States with over 25,000 yearly deaths caused by NHL. Maxene was terrified,

as anyone would be:

“You know, I often wonder if I caused the cancer. I’m a fighter, but sometimes I think I fight too much. Nothing rolls off my back—I internalize

everything. David is good for me that way, when I start to get all riled up because of some problem at work or at school with (our son) Doryn, he just says,

‘Let it go—it doesn’t matter,’ and he’s right.”

Maxene married in 1997 after returning to Sydney. She beat the 1996

lymphoma diagnosis and decided to stop living for others; she needed to live for

herself. She began to meditate and paint. Painting was a passion. Her work was

featured in galleries and even won awards and then, she met David.

David was a businessman, divorced with a teen daughter. He was a native

Australian, who lived most of his life in Sydney, residing in a nearby harbour‐ side Sydney apartment. Maxene maintained her Sydney Harbour apartment, 149

even when she moved back to the States in the early 90’s. She always knew she

would return to her home away from home, the country that she fell in love with

as a young woman—the city half‐way around the world that stole her heart.

Maxene was in her late forties when she met David. The two had much in

common. Maxene desperately wanted a family, and with David, it was ready‐ made. David’s daughter was a teen when they married, but Maxene still enjoyed playing mom every other week when she saw her step‐daughter, Nikki. Nikki even traveled with Maxene to the States to visit family. They were fast friends, but Maxene still wanted more; she wanted…a baby.

Because Maxene was almost fifty years old, she was unable to go through

conventional adoption methods in Australia. Her health history did not help

either. She decided to go with an American adoption attorney based in Hawaii.

It was still about a nine‐hour flight from Sydney, but it was the only thing

Maxene could do to make her dream happen. The cost of doing a private

adoption was exorbitant. Maxene and David would spend more than $50,000 to

adopt their son, Doryn, in 1998.

“It was totally worth every penny,” says Maxene, who describes herself as a

“passionate mother.” And I don’t doubt that for a moment. Maxene and I get

along well because we share the same kind of will, the same kind of passion. We

are unstoppable women, until we get cancer.

Doryn was three years old when Maxene was diagnosed with the recurrence

of NHL. “Doryn became number one to me; David, well, David was

second…and still is. David didn’t deal well with the illness. I was still taking

care of Doryn, working, taking care of our home and David was going about his

work as if nothing were different, as if I wasn’t sick from the chemotherapy 150

treatments. I was quite frustrated. My sister flew in from the States to help me for six weeks during the worst of it. Thank God for her—if she didn’t come, I don’t know what would have happened.”

All women with cancer struggle with how to tell their children, especially

very young children, about the disease, the treatments and the sometimes

terrifying side‐effects of those treatments. Maxene told Doryn she had cancer.

She explained she was going to take “chemo” to fight the cancer because the

cancer was dangerous, but so was the chemo. She told him she would be very

tired and that her hair would fall out but that in about a year, when Doryn turned four, she would be feeling better.

This is the way I chose to tell my young son, not quite two yet speaking in

full sentences, about the cancer and treatments during my original diagnosis of brain cancer in 1991, just four years before Maxene’s first diagnosis. I’ve known

Maxene for years. We knew each other during my 1991 diagnosis. She was a lovely friend, very supportive, bringing me helpful books to read when she visited. During my recurrence in 2001, Maxene was in Australia. It was mere months after my surgery in 2001 when Maxene was diagnosed with her recurrence as well. Our treatment paralleled each other, except that Maxene’s

surgery was almost a year after mine. Her surgery was a bone marrow

transplant after completing chemotherapy. Though Maxene had one viable

match with a sibling in the States, she chose to use her own bone marrow for the

transplant, a long and painful process.

“The first cancer experience made me want to absorb life. I was prolific in

my art, traveled everywhere, did what I wanted to do with abandon. When I

finally got Doryn, my mothering was no different than anything else in my life. I 151

was very intense about it all. And when I got sick, I kept pounding into Doryn’s

head ‘Mommy loves you,’ every chance I got. I was so scared that he wouldn’t remember how much I loved him if something happened. But I’m better now.”

This was my reaction, too, after my original diagnosis in 1991. I would

buy clothing, shoes, coats, even toys, at least three years in advance for Gary, my

son. My husband, Bob, could barely keep up with the bills during that period.

In fact, we couldn’t keep up with the advanced spending and became buried by

the accumulated debt. I’m not proud of it. It’s one of my biggest regrets. For

me, at that time, buying clothing and other necessities for Gary was the best and

only way to deal with an uncontrollable situation. I had to reclaim some agency

over my young life, despite the financial harm we suffered. From what I can tell,

cancer makes you see the big picture but in a small way because everything

becomes incredibly focused. Life is short—that’s the big picture. Now, for a

moment, imagine that it’s your life which is short and let the tunnel vision begin.

Filtered through an individual’s personal experience, the idea that life is short

can become a dangerous one—like all extremists with extreme ideas. Maxene

faced this same scenario, but after her recurrence.

Gary was my absolute focus from 1991 to 2001, the first leg of remission between my original diagnosis and recurrence. Doryn is now Maxene’s absolute focus. David is out:

“Since I met David, I’ve stopped doing things for myself. I don’t like that,

but then Doryn came, and I put everything into him.”

Maxene goes on to say that after she and David adopted Doryn, she began to

feel some resentment towards David. He didn’t understand her ferocity. Still 152

doesn’t, according to Maxene. But Maxene admits that though David has some trouble showing emotion, during her illness the two shared tender moments:

“After the transplant, I remained in the hospital. David would come in

and we would lie in the tiny hospital bed together. It was so intimate. He would

massage my feet, and tease me about my lack of hair—he made me laugh when

no one else could.”

Maxene’s love for David is obvious as she speaks, “I never used to listen to David, but I do now,” she adds softly, her voice practically a whisper.

The transplant in 2002 took place after Maxene successfully completed her

chemotherapy. Doctors had to deplete Maxene of her white cells by inserting a

needle into her groin. It was an eight‐hour procedure. The blood was cleared

out, then treated and returned. Maxene recalls having a “big stick” in her leg

during the procedure. The return of her improved marrow took about an hour

and was done intravenously.

“It was incredibly painful and difficult for me but you do what you have to do,” Maxene sighs as she finished her description. She seems tired as we talk, and I can sense that perhaps Maxene has had enough of thinking and talking about this harrowing period of her life.

Mind, Body and Spirit

Maxene had several rounds of chemotherapy. She also took steroids and a

new drug for lymphoma developed by a German doctor. She doesn’t remember

the name of the drug, or the name of the doctor. Maxene is fuzzy on many

details of her most recent cancer experience: 153

“You know, I really didn’t want to know what was going on—that wasn’t

important. All I knew was that I was going to have to help myself. I told my

doctor, ‘You get me to remission, and I’ll cure myself’.”

Strong statement from an even stronger woman. I could practically see

Maxene strapping on her breast plate and getting into the “En garde!” stance that

fencers use before beginning a duel.

Maxene felt that her recurrence was not actually a recurrence but still the primary cancer from 1996. She intuited that not all the cancer cells were destroyed during her first treatment, and she was quite correct. Malignant cancer of any kind comes back, there doesn’t have to be any more reason than that. It’s the nature of the beast. Cancer treatments, like radiation, surgery and chemotherapy, may stop the cancer from growing and certainly can kill many, if not most, of the cells, but there are always a few rather virulent cells that manage to just sleep, go dormant, or worse, travel somewhere else in the body and wait to awaken there. Doctors will say after a five‐year period with no recurrence that a patient is in remission. This is just medical rhetoric—a sales pitch, if you will.

People may not want to hear the truth, but patients who ask deserve to know.

Maxene wasn’t interested in doctor‐speak; she felt that she was the reason for the cancer cells wake‐up call. She takes ownership for her cancer. Something I found entirely amazing though the idea is not new.

The idea of psycho‐oncology has been continuously explored in the last

thirty years since Irving Yalom’s early studies with cancer patients in the 1970s, described more fully in Stephanie’s chapter. Yalom’s studies, along with the efforts from other institutions like UCLA and the National Institute for Health

(NIH), have attempted to find some measurement of the mind‐body connection. 154

Maxene is not the first to consider her own part in her illness, but she is one of the first people I’ve met to truly believe that she has the ability to cure herself.

I would love to believe the mind‐body connection is so strong that a

patient could, in effect, cure themselves along with the help of more conventional

methods. This thought is dangerous though. If a patient has the ability to cure themselves, then it must be true that the same patient also has the capability of being the impetus for the disease as well. I find it difficult to accept ownership for my cancers. Am I killing myself? It’s a question I’ve asked before, and I’m not sure I like the answers being revealed.

It’s a good possibility that, like Maxene, my internalizing has contributed to my illness. Though it’s been four years since my 2001 neurosurgeries, I can still feel searing pain along the incision line. It feels like someone is cutting the skin to peel back the scalp and create a game of connect‐the‐dots with my skull using a surgical saw and drill. It feels like that because that’s actually happened—three times in the last fifteen years.

My oncologist says that the pain is not uncommon and is possibly a re‐ knitting of the nerves in the scalp. No one told me this would happen. I feel betrayed, like after my Melanoma diagnosis when I was told by a doctor who is also a friend, that heavy use of steroids, like Decadron, can darken or even create new freckles or moles on skin—and that this is why I was diagnosed with

Melanoma (in 2005). I had two neurosurgeries in 2001, one on August 27th and another one‐month later on October 1st. I had taken Decadron in quick

succession to help reduce brain swelling after each of the surgeries. Apparently,

this is what was meant by the patient waiver I signed before receiving treatment,

“some aspects of treatment may result in developing other types of cancer.” 155

Between it all—the treatments, life, and the cancer—I feel a sense of

certain doom. I often find myself wondering if I’m built to last, like my

American‐car counterparts, who are built to last not much more than a decade.

Maxene believes that the solution to it all is in the mind…whatever it is a person

believes:

“We can still take it for granted, you know. We beat it, so we forget how

it all happened as we try to live as much life as possible, but we need to

remember that we did beat it, and if necessary, we can do it again.”

Maxene’s confidence is astounding. And yet, she is still vulnerable:

“I was trying to do all the right mother‐things, joining play groups and trying to keep up with my growing toddler by taking him to parks. I’d sit with these women who were at least twenty years younger than me, and I’d feel a bit inadequate. I had lived two lifetimes over them, and yet, I’d feel inadequate! It was awful, and then when I got the cancer, the other mothers would look at me

and each other as if to say, ‘We knew this would happen—she’s too old.’ And I

did feel ‘old’ during the chemo. I was just so tired…I wasn’t very happy.”

Maxene describes life previous to adopting Doryn as hectic, but fulfilling,

except for the part about wanting, no needing, a baby in her life. After adopting

Doryn, she felt happy as a mother but dissatisfied with her marriage. In

America, fifty‐percent of all marriages end in divorce within the first seven years.

Money is usually the main reason, but the underlying truth is that marriage is

hard. I often think that you must be young and naïve to do it—otherwise, who

would be willing to engage in such an activity? You have to share everything,

like money, but also, like debt. You knit your life to another’s and if the other person isn’t completely committed (which is impossible to ever really know 156

unless you’re telepathic), your life can be turned completely upside down at any

given moment. It’s not just you who has control over your life; the other person

has almost equal billing. It’s hard enough to deal with your own problems, after

marriage, you multiply those problems by two. And then, children enter the

picture—now you’re really juggling. It’s hard, but worth it if you have a good

life‐partner. Everything that’s worth doing in life is always hard, including

reclaiming life after cancer.

Maxene decided to move. The schools in Australia were excellent, but she

wanted Doryn to have more. She began researching private schools in the States,

and found the answer to her problems. A private preparatory school in Concord,

Massachusetts, with a history as long and deep as the town it resided in, was

looking for a teacher. Maxene was a teacher. The school was also offering free

tuition for the children of teachers. Doryn needed a better education; Maxene

was a teacher; it all seemed to add up. The only factor missing from the equation

was David.

David is a native Australian. He lived in Sydney his entire life. His

parents, two siblings and their families also all lived in Australia. And besides that, his one and only daughter, Nikki, lived in Australia, too. David was not keen on the idea of moving. Not to mention the more practical side of things:

David not only lived in Australia, it was where he worked. He made a good

living. Both he and Maxene owned property on Sydney Harbour, very valuable

real estate. David loved playing rugby with his mates each week. He was on a

local team. He had never encountered snow or temperatures much below forty degrees Fahrenheit. Concord, Massachusetts was a long way to go for the possibility of better schooling for Doryn. He loved Doryn just as much as 157

Maxene. He didn’t begrudge his son anything. But moving half‐way around the

world, away from everyone and everything that he knew? It was a lot to ask.

It was one year after Maxene’s transplant. She had suffered through

multiple bouts of pneumonia and innumerable colds because of the procedure.

Killing all her white blood cells may have cured her, but it was at a steep price.

Maxene applied for the job in Concord—going on the premise that this was something she needed to do for Doryn—remembering that life is short. She arranged for the interview during her annual visit to her family, still living in

Boston. Her father was ninety‐years old and failing. He had been receiving dialysis for years; his kidneys were only at forty percent of their capacity. Her mother, then eighty‐one, was well but also had her share of medical issues including breast cancer and back surgery that left her mobility compromised.

The pull was too deep for Maxene to consider David in the equation. It was what she felt she needed to do, no matter what.

Maxene got the job at the private school in Concord. She sold a

condominium she owned on the South Shore in Massachusetts—an investment

she kept after her return to Australia in 1997—and reinvested the money in

another condo in Concord, near the school. She moved. David didn’t.

In order to leave properly, David had to give notice at work, get things settled with their Sydney properties, apply for jobs, and deal with how his daughter would feel about the whole thing. Nikki was nineteen. She was a student at the University of Sydney. Because David had been divorced from

Nikki’s mother for many years, Nikki didn’t see David on a daily basis and was used to his absence. But being able to see each other every other week was quite different from not being able to see each other save for a 26‐hour plane ride 158

around the world. There were many issues left for David to settle, and he had to

do it on his own.

Wisdom

Though Maxene may have felt that David was second, it’s clear who David’s

priorities rested on. He moved to Concord in October, about three months after

Maxene’s move to the States. He experienced snow for the first time that

December, and consequently broke his ankle as a result of a sledding accident. It

took time, but David eventually found employment with an investment firm

with Australian ties. Nothing is as critical in a good marriage then

commitment—it was obvious that David had it.

Maxene is still teaching at the school in Concord. She pulled Doryn out before the end of the first year because she was dissatisfied with Doryn’s teacher.

Maxene realised the depth and breadth of the internal school politics, and like the school itself, with far‐reaching, ancient roots as old as the history of New

England. She enrolled Doryn in the public school in Concord, one of the best

districts in Massachusetts.

Meanwhile, I can’t help but wonder how David is doing amidst all this.

Maxene feels less‐than‐thrilled:

“It’s just terrible at work. It’s one of the worst (teaching) positions I’ve ever

held, and I’ve worked all over world! I just had to try it for Doryn. I’m going to

continue through the end of the year, but if David thinks we can swing it, (I) will

be resigning after that. Now that David’s job is going well, we’re feeling like all

the stress I’m under at work may not be worth the pay.” 159

I’m not one to judge, having done some utterly stupid things after my 1991 cancer diagnosis that added up to close to $40,000 in debt—about $10,000 less than Maxene’s adoption costs. Maxene’s actions show how cancer survivors are like soldiers who come home after combat. Things can never be normal again.

You know too much, have seen too much. Passion is a killer, perhaps more so than we know, or admit to knowing. The passion in the extreme emotions felt after diagnosis make for a perfect breeding ground for recurrence, or other health issues. But we must live with passion everyday. It exists in all things we truly care about. And for most adult women, that includes motherhood.

Motherhood encompasses all‐things emotional…extremely emotional.

There’s no way around it. Your child falls down and you feel an empathic sadness; if your child does well in school, or in an activity like sports, you feel elation and pride. It is rare in motherhood to ever be on a neutral plateau. As your child grows and becomes a young adult, aptly called a teenager, the sophomoric, still‐growing brain in a battle for independence, will deliver by mouth words hurtful or argumentative (did I mention I have a 17‐year old?), and you feel furious. The worry you feel about and for your child is constant and consistent—which is an extreme in and of its self. The emotional cycle of motherhood continues to turn for eighteen years and beyond. That is not to say that fatherhood doesn’t have a share in the emotionality of parenthood—but fatherhood is different, and I am reminded of a phrase often used in feminist studies, though typically used for an opposite purpose, “different is not

deficient.” Motherhood is full of stress, but it is also full of joy and I don’t think

there is a mother alive who would not swear that every second is worth the cost…whatever that cost may be. 160

There’s no real way to be stress free—the human psyche is a living, breathing entity that evolves, shifts, changes, regresses, progresses—but at what price on our physical bodies? I hate that I must now consider even simple situations more carefully. My emotions are not allowed to run riot anymore because if they do, hives, headaches, Melanoma, and brain tumours happen. I need to not just be of right mind, as the ancient Stoics would have said, but I also need to maintain physical activity and eat properly to be of right body.

Sometimes I get tired of being mindful and want to just get a Snickers bar from the vending machine at work or skip five days of exercise (or both), but when I do (and I do), my psychology suffers—I become less motivated, less enthusiastic, and then, physical problems manifest. It’s like a conundrum—no logical way to end the cycle. So, when I seem to be “Master of Two Worlds,” doing everything

I need to do to stay wholly healthy, I’m really not because somewhere inside, I want to break free of both worlds and live somewhere completely different. I suppose that would be a good time to consider going on vacation, but vacations require money which tends to hamper that possibility. Maxene felt the same way, when she started to feel like the new job, new home, and entirely new country began to cave in. She, David and Doryn headed out of town to a cabin in

New Hampshire, just a few hours from their home in Concord, for a family weekend get‐away:

“You ask yourself, ‘Can I afford this?’ and even if the answer is no, you still

need to do it because then you ask yourself, ‘Can I afford not to do this?’—and it’s like my father always said—well, two things: ‘Health is real wealth, money is

just honey’ and then…,” she stops to sigh, remembering who father who passed

away since her move to Concord, then continues, “…my favorite, ‘You do what

you got to do.’ He was right.” 161

And I agree. But despite this simple wisdom, there is no simple solution.

Meditating, taking care of your self physically through diet and exercise, talking

to friends, writing in a journal—it’s a full‐time job to stay wholly healthy. How

does it work with things like career, taking care of the home, the family?

Sometimes it doesn’t, and that is the space, the small crack in an old window, where cancer can get in. It’s terrifying—and there is no resolution, just acceptance.

The Buddha outlined an eight‐fold path to enlightenment. In the steps outlined by the Buddha, one must be incredibly mindful always to achieve true enlightenment, and what is learned along the enlightened journey is compassionate wisdom for the misery and suffering apparent in the world, like cancer—not an easy feat, not even for monks who spend their lives in relative isolation pursuing this goal. But the idea is one as old as mythology, and older.

An even more ancient philosophy, Vedanta, one of the nine systems of Indian

philosophy based on the writings of the Upanishads, uses a similar idea.

In Vedanta, what we think is real, isn’t. In order to see beyond maya, one

must go inward to understand true reality. Reality is a function of the mind.

You create it. This ancient idea seems to uphold the 30 years of research on the

mind‐body connection discussed in previous chapters of this book. Perhaps we cannot control a disease once it begins, but we can exercise some psychological control over ourselves and our lives to deal with the disease in a healthy way.

So, you eat chocolate everyday, take vacations you can’t afford, do extreme

things like buying diamonds or spending absurd amounts of money to get what

you want, or maybe you just ignore your work‐load and spend time with your

children. Life is short. Though in light of all this, my still‐fear is that I’m just a 162

captive of the cancer, where I live for today because somewhere deep inside, I

don’t believe there will be a tomorrow. I decide to ask Maxene the same

question:

“Yeah, I feel the same way. We’re human, there’s no way around it. It’s like

my father said—you have to do whatever it is that you need to—and that

includes sometimes being extreme to feel good, or at least better, about your fate.” Kathryn’s Story

“I hate playing the, I’m‐sicker‐than‐you game, there’s no cheese down that tunnel. Everyone’s life is tragic.”

At forty‐one years old, Kathryn, is amazed that she is still alive after surviving childhood Osteosarcoma, also called Osteogenic Sarcoma, a form of

bone cancer that affects people ages 10 to 30, according to the American Cancer

Society. Osteosarcoma is a malignant cancer that typically begins at the end of large bones, like in the legs, arms or pelvis, occurring in children, typically boys, near joints or the end of larger bones affected by rapid growth.23 Kathryn was

first diagnosed with this cancer at age ten in April 1974. But that’s not where her

story begins.

In August 1973 Kathryn’s family moved from California to Sturbridge,

Massachusetts. Two months later, in October 1973, Kathryn’s father died, leaving her mother alone to raise Kathryn, and Kathryn’s two younger siblings.

The move from California to Massachusetts was difficult for Kathryn, and everyone else in the household:

“We had no money—poor as church mice. My parents couldn’t afford to

live in California, so my dad decided to try western Massachusetts, where the

cost of living was more manageable. The problem was, there was still no money

in Massachusetts, and the move took a toll on the whole family. It was hard for

all of us to leave our home, friends, school and start over again.”

23 See the American Cancer Society: www.cancer.org 164

Things became even tenser in the house when Kathryn’s father took his

own life in October that same year. Kathryn’s mother dealt with the situation by

not dealing with it, and took out her anger, grief and frustration on the children.

Kathryn commented that her mother did not let up on her just because she got

cancer six months later in April of 1974.

“I’m not estranged from my family; I know where they live, but it’s not

like we all come together for some big love‐fest at the holidays. The woman who

was my physical therapist during my cancer experiences sort of adopted me. I consider her to be my surrogate mom, and her kids are like my siblings—their kids are like my nieces and nephews. That’s who I go to when I say I’m going home, or going to visit my family.”

Kathryn was one of the earlier cases of Osteosarcoma during a time when

treatments were not yet established. As research director for pharmaceutical

companies world‐wide, Kathryn has the medical knowledge to fully understand

the role of her cancer treatments in her life now. Kathryn is an amputee, part of

the prescribed treatment for Osteosarcoma which still continues today.24 She

also contracted a latent form of Hepatitus C during a blood transfusion in 1976 after extensive chemotherapy destroyed her red and white blood cell counts; the virus was later discovered in 1998 during a routine blood check. Kathryn

continues to suffer from congenital heart disease, brought on by the three‐year

intensive chemotherapy treatments she received when doctors discovered that

Kathryn’s cancer had spread to her left knee in 1975. Her right knee was the

original locale of the first orange‐sized tumour. Though only a child, Kathryn

was terrified. She knew what had happened when doctors first discovered her

24 The Lucile Packard Children’s Hospital at Stanford still lists amputation, or limb sparing, as part of the recommended course of treatment for Osteosarcoma, along with radiation and chemotherapy. See www.lpch.org 165

tumour in April 1974; it was less than one week after her original diagnosis when

Kathryn awoke in a hospital bed with her right leg missing from the hip down.

She knew the drill and expected the worst. Luckily, by 1975, doctors had learned

that Osteosarcoma in the knees could benefit just as well from knee replacement,

as opposed to complete amputation of the leg.

After knee‐replacement surgery in November 1975, Kathryn again started

chemotherapy. A few months later in January 1976, doctors at the Dana Farber

Cancer Center in Boston, Massachusetts, where Kathryn was being treated, discovered that the cancer had spread to her lungs. Doctors decided to give

Kathryn simultaneous radiation and chemotherapy. It was during this time that

Kathryn, now 12 years old, suffered coronary arrest and a break‐down of her mucus membrane. Giving radiation and chemotherapy simultaneously is not a recommended form of treatment today. Though both radiation and chemotherapy may be used as cancer treatments, one follows the other and can never be given at the same time.

“Chemotherapy, because of its toxicity to the body, is usually given to

patients after radiation, if radiation is part of the prescribed treatment. Radiation

is also harmful to the body. There needs to be at least a few months between

chemo and radiation because together, the two can kill a person—hey, people die

during chemotherapy all the time,” says Kathryn from her expertise in

pharmaceutical research.

Kathryn started the radiation and chemotherapy regime after having two separate surgeries to remove the tumours on each of her lungs, the first surgery in February 1976 and the second in March. Later that year in June, Kathryn’s 166

doctors would discover the development of yet another tumour in Kathryn’s

lungs.

“This is when I decided I was going to die. Kids had died around me

during my long‐term stay at Children’s Hospital, and the thing was, I knew I

was a lot sicker than some of the kids who had died. I mean, c’mon! All I kept

thinking was, ‘How could I possibly survive this’?”

Kathryn felt hopeless and helpless, but it was her mother who refused to

give up:

“The woman would have agreed to do whatever the doctors came up with. She refused to accept that I was going to die. It was as though it were a biological imperative—something at the cellular level—to save my life.”

Kathryn’s mother’s perseverance paid off. By age fourteen, Kathryn was finally cancer‐free. At the time, doctors used a mathematical formula based on age to calculate whether or not a patient was cured. According to Kathryn, her doctors at Dana Farber calculated that if she suffered no recurrences by age forty‐ two, then she was cured. In 2006, Kathryn turns forty‐two. And she is as surprised by this as anyone:

“I’ve started to see a therapist, you know why? I recently went to my

cardiologist, and he asked me if I was contributing to my retirement account; I

told him that I contribute the bare minimum, that I’m not terribly concerned

about growing old. He told me, in all seriousness, that I needed to start to think

about it—about retiring—because I’m apparently going to be old enough one

day to do it. It freaked me out.” 167

Here is where I relate to what Kathryn is saying: When first diagnosed with a malignant brain tumour at age twenty in 1991, I could not see myself living a very long life. Like Kathryn had said of her earlier trials, “How could I possibly survive?” It’s now been a total of over fifteen years from my first diagnosis; almost five years from my recurrence in 2001, yet I’m still here. Like

Kathryn, I generally don’t concern myself too much with savings for the future— it’s not something I can worry about. Many of my contemporaries, including my twenty‐seven year old brother, worry about being “vested” and consistently contribute the maximum allowed to their retirement plans. I hope I make it to an age where I might wish to retire—but it seems almost impossible…almost. In the last few years, the further I get from the last recurrence, I’m at least able to consider the possibility of a long life without getting grief‐stricken that, in reality, a long life won’t actually happen. And I’m a positive gal. I can put a good spin on pretty much anything—it’s a talent I’ve had my whole life. But to allow myself to believe that I’ll grow old, be with my husband for decades to come, see the next generation, and maybe even the next one after that? I’m too careful for that mistake. And Kathryn is, too, which is why she has chosen therapy to help her wrap her brain around the fact that she is a 30‐year survivor of

Osteosarcoma, and it’s not coming back. Thirty years? It seems like a lifetime to people like us, because it is. We can take nothing for granted, and we don’t.

Life and Love

Kathryn married in 1997. Peter, her husband, is a kind man who only knew Kathryn many years after her cancer experiences. He describes his wife as a strong woman who makes life easier to live. Kathryn didn’t even tell Peter about her cancer until things started to get more serious in their growing relationship. 168

“Peter is such a sweet man. Before we met, I was getting so frustrated. If

the men I was dating were all that was available, I decided that I’d rather have a

cat. Then, Peter answered my ad.”

Kathryn and a good friend had decided to do something fun together: put

personal ads in a local paper, and then write an article about the experience.

This, again, is part of what makes Kathryn so extraordinary. When I want to do

something fun, I go to movies or go shopping—it lacks imagination, but that’s

what I do. For Kathryn, “fun” is journaling about an experience and spinning it

into a publishable piece. No wonder she’s unstoppable! She describes what her

first meeting with Peter’s family was like:

“All I kept thinking was, this should be fun—these people are probably

thinking, ‘Why is he hooking up with a walking chest wound?’ I mean, really, look at me, I’m a mess.”

Kathryn is anything but. She is a petite lady with auburn bobbed hair and

just‐visible reddish freckles. She walks with a cane, but otherwise, doesn’t look any different from anyone else. She dresses well in boutique‐style clothing and is always toting the latest technology. Technology is to Kathryn what jewelry is to me—an obsession.

“If it’s new, I’ve got it, and if I don’t yet have it, it’s because I’ve ordered it

and I’m just waiting for the package to arrive. I was one of the first people to

buy into Blue‐tooth technology and the Blackberry. I love my toys!”

Kathryn is funny and smart with an immediate charm. She laughs loudly

as she describes her love for all things electronic. Kathryn also loves travel, a

part of her job as a pharmaceutical research director. Kathryn is one of the few 169

people I know who has successfully parleyed personal knowledge and

experience into a career, despite the fact that her only degree is a Bachelors in

American Studies—with no formal education in pharmaceuticals or medical

research.

“I love what I do. And I know there are people out there who are down on pharmaceutical companies because of the increased cost of drugs. Here’s what those people fail to understand: Pharmaceutical research requires money.

All those doctors working in the labs need to be paid. I love it when someone in conversation starts chirping about how a socialized medical system is better than ours. Just wait until they have cancer, or need to get a specific name‐brand drug, then we’ll see what system is better. Yes, it’s expensive, but people can get any drugs they need and have access to some of the best health‐care in the world— immediately, without having to be placed on a waiting list. I love my job; I’m proud of it. Part of what I do helps people, and that’s a good feeling.”

Kathryn has traveled to Brazil, Hong Kong, London, Paris, all over the

United States, and all for pharmaceutical research. While I don’t have a

prosthetic limb, I do have a half‐leg orthotic‐brace that holds my paralysed leg

below the knee in place so I may walk. I have approximately 25% usage of both

the left hip and knee. The rest is immobile. I lack balance because of this and use

a four‐wheeled purple walker to aid me while walking. I tried a cane, but was covered in bruises because of all the falls, so ultimately decided the walker was the best choice if I wanted independence, which I do. I marvel at Kathryn’s mobility—she walks well with just a cane though she has an almost full‐leg prosthetic. Being handicapped isn’t easy, but Kathryn makes it look like it is.

With all the travel she described, I wondered how Kathryn managed on long 170

international flights, with ground transportation to and from airports, and accessibility in older cities, like Paris. Her answer was surprising:

“I can do stairs if I have to, though it’s not something I like to do. Peter

and I recently moved into a one‐story home for this reason. I always travel in business class; this helps with having space to stretch out and not knock over

your seat‐mate’s Coke every time you need to go to the bathroom. I also request

wheelchair service wherever I go. It’s a bit of a hassle to have to wait for

someone to fetch you and your luggage, but it’s much easier to navigate the ever‐ increasing‐in‐size airports. I get to the airport in plenty of time. Security is not a

big hassle once they figure out that I have a prosthetic. I almost always stay at

nicer hotels that have accessible rooms but if I get an unexpected lay‐over

somewhere—which does happen—and I’m stuck in someplace with less‐than

accommodations, I just hop.”

Yes, you read it correctly. Kathryn hops on one leg to get to and from the

shower. As with my prosthetic‐like brace, you can’t wear a full prosthetic into the shower. So how do you get there in the morning? And what about having to

go to the bathroom in the middle of night? These were all issues I had to deal with, too, and all of it took time to work out. Because Kathryn has dealt with a prosthetic since childhood, she has been able to adapt by using just one leg with perfect balance. I can’t hop, and even if I could, my left leg, the paralysed leg, would drag helplessly along. I can barely bend my knee, at least not without tremendous concentration, and typically I have to hike the leg using my hip to perform a simple walking motion. Even that is not easy; my hip also retained

75% paralysis. So, when I look at Kathryn and listen to her story, it is within the context of personal experience that makes me think, and then mindlessly utter aloud, “Wow!” 171

Kathryn is who I hope to be someday; a 30‐year survivor terrified about

retirement, but a woman who totally owns her experiences and her body.

Ownership is tricky. I’m not always open to having it, especially when it comes

to cancer. Though I rarely admit to this, I often wish, in a very small way, that I

could retreat to my girlhood in pink dresses with white polka dots, where the

biggest worry I had was whether or not I fed my pet goldfish, Mr. Big, too much

fish food. I don’t really want to be a child again—in fact, I despised being one—

but the freedom I felt before cancer is something I remember and sometimes long

for. Kathryn sets me straight fairly quickly:

“I feel lucky about getting the cancer—it’s the greatest thing that ever

happened to me.”

And, believe it or not, Kathryn is totally serious. It’s easier to say this with

30‐years sitting between you and the monster. It’s when you see the monster’s shadow on an MRI scan, knowing the monster is close, that you simply cannot feel lucky about the battle you must face, or the battles you’ve already fought.

And again, I consider the parallel between Kathryn’s feelings about her cancer experiences and what the kidnapped who suffer from Stockholm Syndrome express about their kidnappers.

More on Life

Kathryn and Peter have no children, but enjoy each other’s company

immensely. The couple have a beloved dog (who is now suffering from

Leukemia), and fill their lives with activities like being a part of a chorale group,

attending jazz camp in summers, going to plays, concerts, movies, and dinners.

The two enjoy traveling together and have built a comfortable life and home: 172

“I love travel, but it’s not so fun without Peter. Our home feels like such a

safe place, and I miss him and everything we live in and around when I’m away.

It’s for these reasons that I’m hoping to wind down on the travel‐end of my job.

Life is too short to be gallivanting around the globe when my real life is at

home.”

Peter feels the same way:

“Kathryn makes life easier to live; anything that could be a problem never

is. She’s very resourceful and is so totally independent. She amazes me.”

It’s obvious that Kathryn has found true happiness and satisfaction in her

current life, and with all of the difficulties in her past experiences, her happiness

is well‐earned.

“I never even thought to tell Peter about the cancer. I mean, I wasn’t hiding anything from him, I’m obviously an amputee for a reason, but I don’t live with the cancer every day anymore.”

Maybe that benefit will pass on to me and other long‐time survivors as the years continue on. It’s something to look forward to, and as Kathryn believes, positive thinking is the key to survival:

“The mind and the body are totally connected, there’s no doubt. It’s

becoming more clear as 30‐years worth of research and study start to surface.

Doctors are beginning to advocate more in this direction, though some guys still

just don’t get it. People have to feel good all around, mind, body and spirit.

Education is important, seeking support when needed is important, and

naturally, taking care of your body is important. It’s a three‐pronged attack, or a

triple‐threat, if you don’t do anything about it.” 173

Kathryn and I talk while sitting at a table draped in starched white linens

with formally dressed wait‐staff wearing black and white uniforms floating like

butterflies around us. We share a piece of what’s called Opera Cake and sip on creamy lattes capped with foam as we fork into the chocolate ganache topping that covers decadent layers of thinly sliced sponge cake soaked in coffee liqueur.

Life, at that moment, seems perfect. And it is. I don’t want to disturb the perfection by asking more questions, but Kathryn’s story is now burning within me and I must know more answers.

I ask Kathryn about several more things, her thoughts on faith, her thoughts on extreme behavior in connection to cancer, and her thoughts on women with cancer and the societal myth that seems to pervasively surround us at all times. Here are her answers:

“I don’t rely on faith; I believe in God, but I don’t believe that I need to necessarily be sitting in a church to commune with him or her or whatever is out

there that’s bigger than us. You either feel it or you don’t. Sitting in a big room

with echoing organ music isn’t going to help you if you don’t believe.

Personally, I don’t think God is as involved as other people want to think. It’s

not like he’s sitting up in heaven, reaching down every time one of the billions of

people here on earth start to cry. I’m a big believer in God helping those who

help themselves—basically, you have to handle your own shit. It’s the bottom line. If you don’t, no one else will. Does that answer the question? I’m not sure I answered it right.”

I happen to agree with Kathryn’s assessment. I believe in God, and do

feel that God exists all around me, though my notion of God is not much more

than a feeling of comfort, a feeling like I’m not really as alone as I sometimes 174

think—a kind of positive energy. I do pray sometimes. Praying is more for my

comfort and helps me to maintain my ever‐hopeful, often naïve, stance about

myself and the world. It’s hard to relate to an active God when you’ve gone

through cancer. Part of the psychological grieving process when faced with a

life‐threatening illness is questioning, why? Why did this happen to me? No

one answers, so you make up your own answer. I can’t believe that my cancer is

a punishment sent from the heavens—it’s a primitive way to think, like blaming

bad weather on bad behavior. As I continue to ponder Kathryn’s answer in the

context of my own beliefs, Kathryn continues with her thoughts on cancer:

“Extreme behavior? Sure, why not? You’re threatened and it pushes you

to extremes. You just have to gain control of it and not let the extreme behavior,

or the disease, control you. It’s definitely not an easy thing to do—heck, I’m still

working on my extreme obsession with new, fad‐driven electronics. There’s a

sense of freedom in being able to buy things you like—it’s temporary, but it

works. You understand, don’t you, bling‐queen?” Kathryn giggles and points at

my jewelry.

I admit that I love my “bling.” Jewelry is fun and pretty, what’s not to like?

And in the face of all the horrors I know, a little jewelry can go a long way. But,

it’s not always healthy to focus on such distractions. The extreme behavior

developed during cancer experiences can carry over.

As a patient, you have to intensify and tighten your focus to include only

that which is important to your survival. Nothing else can matter. And cancer

can take sometimes years to treat, so after years of developing and maintaining

this extremism, what do you do when it’s over? You’re still an extreme person, though the treatments are finished, your feelings don’t change. I find that my 175 extreme behavior, now translated through my extreme love of jewelry, is often fueled by the fear that the cancer will come back. The cancer has come back, and is scheduled for a future appointment (hopefully not for another fifteen or twenty years—really, why stop there? Let’s shoot for the moon and hope to land among the stars—let’s say, never…). The one thing I thought of when the cancer returned was all the things I hadn’t yet accomplished. I wanted to see Hawaii. I wanted to publish my young adult novel I’d just finished. I wanted to see my son grow up and my husband grow old. Now, half of the things I wanted require only time, but the other half, well, requires money.

I’ve become rather nonchalant about the almighty dollar in the last sixteen years. Happiness is more important than leaving a few thousand dollars to your children. I want to enjoy life, and if jewelry gets me there, then jewelry it is!

However, as unconcerned as I may be in my little survivor‐bubble, money is still important. My family relies on me to help provide for our home and our future.

I love my family more than anything—and would gladly cease my jewelry habit to that end. In a sense, the extreme behavior developed during a cancer experience parallels the behaviors and emotions of an addictive personality, where a void exists that must be filled, no matter what the cost. I’d like to believe I’m in control of my spending, but I know I’m not. It is something I am trying to beat before it beats me. I’ve pledged to only stick within a specific budget for jewelry purchases. In one month alone, I’ve come close to spending the designated amount…for the entire year. In further efforts to gain my equilibrium amidst my extremity, I have decided to sell some of the pieces I no longer wear to try and recoup some of the dollars spent. So much effort spent on something of so little significance. Why can’t I just quit altogether? Because I don’t quit anything—I can’t. If I allow myself to quit this, what happens next? 176

Will I then quit life one day, too? That’s not part of my DNA—no quitting! Like

Winston Churchill’s famous quote, “Never, never, never quit!” And I never will.

But I do hope to at least modify my extremism in the meantime.

Part of that extremism for me has spilled over into women’s issues. And

Kathryn understands why:

“Women get the short end of the stick all the time—girls, I hate to tell ya,

but if you keep allowing men to pay for your boobs, ass, legs, or whatever you’re

selling, the problem is going to persist. I’ve never really thought about how

women are featured with illness, but now that I am, it’s obvious. Women are

always featured as these passive, weak creatures. My God, think of Debra

Winger in Terms of Endearment! Now that takes the cake!”

Women appear as the absent, dead or dying parent in so many pop‐cultural

mediums, including movies like Kathryn mentioned. It’s a shame to see the

ever‐growing list of films and television shows who use the death of a mother, usually by cancer because cancer is so prevalent nowadays (another unfortunate reality in society), as a main plot element. Women do die from cancer, but so do men. By showing this frequent theme in our popular culture, it creates a

mythology around women with illness, and that is something that women who

are aware of it must also fight when faced with cancer.

“You know what, there’s not much you can do but live one day at a time—I know it’s cliché, but it’s the truth. The one thing I always keep in mind

when it comes to cancer, or anything else really, is that your obligation is not to the past, it’s to the future. No sense in looking backward when all you can see is

the road in front of you….” 177

Judy’s Story

I first met Judy many years ago in 1993. We were acquaintances through friends for a long time before we actually had a conversation. I didn’t know Judy

well, in fact, I didn’t even know she had suffered through multiple breast cancer

diagnoses during the decade we were acquainted until we were placed at the

same table during a 2003 bat mitzvah for the daughter of mutual friends. I had

just completed my last treatment for my own recurrence of brain cancer about

eight months earlier. Judy looked totally normal—not like a cancer survivor at

all. The only tell‐tale sign was her very short hair cut, but Judy had always worn

her hair short, so I didn’t pick up on it. We started talking about cancer, because

I was paralysed from the surgery to remove the tumour in my brain, and was using a walker to get around. The metallic purple, four‐wheeled “Stingray” is an obvious companion, and usually, the topic of conversation for those who don’t know me. That’s how it all started.

We talked for hours about our cancer experiences at the bat mitzvah, and in

between our talk, we ate good food, drank good wine, and danced with our

husbands. When I dance now, it’s not pretty—but I still dance. Judy and her

husband, Mark, however, were terrific dancers. Both were smiling and gazing

into each others eyes all night. I remember thinking two things as I watched the

two twirl and sway to the music: One was that I wished I could dance more like

Judy and Mark; the other was the immediate recognition of how both Judy and

Mark’s grace and glow on the dance floor was because the two had

survived…together. Yes, the mark of true love, but also, the indelible mark of a

cancer experience. 178

Judy and I talked in great detail that night. We continued the conversation

on the phone several times after the bat mitzvah, and then, my life got busy with,

of all things, this very book. I hadn’t heard from Judy for several months but

didn’t think much of it—she had two daughters and was busy with family. It wasn’t until late October of 2003, that I heard through a mutual friend, that Judy had been diagnosed with a recurrence of breast cancer. I wish I could say that I

rushed to the phone to call, but I didn’t. Still reeling from my own experiences

the year before, I just couldn’t. I wanted to, and made multiple attempts—but

always fell short of dialing the numbers. Part of the reason for this was self‐

preservation. After my long, difficult treatments I needed a mental break from all things cancer. I was open to telling my story and to listening to other people’s stories—but I couldn’t yet handle watching a person I cared about go through the torture and trials of a recurrence. Every time I thought about it, I felt like I was being smothered. Not being there for Judy in the last few months of her life is a deep regret.

It is important for the reader to understand the circumstances surrounding

Judy’s chapter. After her death in mid‐January 2004, I tried reaching out to her husband, Mark. Mark is an extraordinary man, intelligent, sensitive, a good father, and great husband, supporter, and care‐giver to Judy. It wasn’t until a fateful meeting in a local grocery store in December 2005 that we were able to reconnect. I had been thinking of Judy, all the time, almost everyday, since her death. During her last four days on earth, because she was so acutely ill, I kept tabs on her by calling the hospital and talking to Judy’s family members and friends. Though we’d had a brief friendship, I had known Judy for over a decade, and felt a decade’s worth of despair crash in when she died. It was probably one of the most profound and formative moments in my life. With the 179

help of Mark and other members of Judy’s family, as well as friends, this chapter,

an ode to one of the most courageous women I’ve ever known, is possible.

Based on the times Judy and I spoke about cancer in 2003, her voice will be clear. Most of the time though, the voice the reader will hear will be that of

Judy’s husband, Mark—who graciously shared the full details of both his and

Judy’s cancer experiences in ongoing interviews through January, February and

March of 2006. This is Judy’s story:

*****

“You have to be a fighter, you just have to. I want to see Rebecca’s bat‐ mitzvah. I want to see my grandchildren,” as Judy spoke on the other end of the

phone, I could hear squeals of delight and laughter in the background. Her daughters, Rebecca and Simona, were playing.

“Are you nervous about the cancer coming back again?” I ask. Having just

ended chemotherapy eight months earlier, it was something I’m not sure I

wanted to know from my new friend. And she must feel the same way because

she hesitates before answering:

“I’m always worried about it; how can you not be?” she ventures. A question I don’t think either of us can answer.

“I don’t know. I really don’t,” was my answer in early spring 2003,

though today in late summer 2006, I have a better handle on my feelings about cancer—only because I’ve had the benefit of luck, time and space.

We ended our conversation there, but picked it up again the following week.

I had called again to ask Judy to join me for lunch to continue our talks on 180

cancer. I was driving again, and, though still unsteady when using the walker on my own, determined to become more independent. Judy was unavailable for

a lunch, but we were able to continue our talk on the phone:

“I’m writing all this down—I’m going to write a book,” I say tentatively, and am surprised by Judy’s answer:

“That’s great! And do I get to be in it?” she asks, and I could hear the

smile in her voice.

“You’re my first customer,” I joke, though badly, but Judy chuckles anyway, and I continue to ask her a few more questions before we inevitably have to hang up:

“Were your parents and friends supportive?” I am really curious about the

answer. My parents were not as supportive as expected, and some of my friends

completely disappeared, while others went above and beyond the call of

friendship. I wondered if Judy shared similar experiences.

“Everyone has been really great; some friends might be uncomfortable,

but most are very helpful. Mark is terrific. He’s such a good husband—like your

Bob.” Here I interrupt with an affirmative “You’re so right” before Judy

continues:

“My parents are very supportive—I’m not sure where we’d be without

their help. Dave and Shelley (Judy’s brother and sister‐in‐law) are also great.

But, I don’t think I could have gotten through everything without Mark. He’s

like my rock. He’s amazing….” she says wistfully. I almost hated to interrupt

with another question, but knew our phone conversation would soon be cut

short by family obligations on both our parts. 181

That is one thing I remember about Judy, she was a great mom. When I

would see her throughout the years at birthday parties and other community

events with her children—even the night of the bat mitzvah in 2003—it was not

just clear but striking, Judy was an excellent mother. So I ask my next question:

“What have you told the girls about the cancer?”

I chose to ask this question because I was first diagnosed with brain cancer in

1991; my son, Gary, was only twenty months old. Gary was eleven during my second diagnosis of brain cancer. The one thing I knew to be the hardest part of

dealing with cancer was dealing with cancer as a mom of younger children.

Cancer’s never easy, whether you are a mother or not, but if you’re a mother, cancer is not just touching your life, or the life of your spouse, it can seriously injure your children. And as a mother, that’s the one thing you strive to avoid everyday—hurting your babies, even if they are no longer babies. As a mom, I feel like my son is the one good thing I’ve done, and could ever hope to accomplish, in my lifetime. I was curious, I guess, to see how Judy might answer, to see what else she might say in association with the question.

“They don’t know much; they are still too young. They know I was sick and

that I went to the doctors to get better—but no details. It’s scary for me to think

about, I’m not sure how they would do with all the details. And hopefully, it

won’t really matter. I’ll be healthy for the rest of their lives…do you think if I say

that three times, it will come true?” Judy jokes; she had a great sense of humor.

Her whole face would light up when she laughed. She chuckled, and so did I.

Hey, what good was going through all those cancer treatments if you couldn’t make a joke about it? But as both Judy and I knew too well, cancer is no joke. 182

“I can’t wait to do things this summer, like ride bikes with the girls and

Mark—oh, I’m sorry, I forgot. You probably can’t ride a bike….” Judy was such a sweet and caring person. She was truly concerned that she had hurt my feelings, and I have to admit, not Judy, but the truth of her words, did hurt.

Today, in 2006, I can ride a bike—and looking backward, wonder if it was Judy who helped to inspire me to persevere and learn….

We ended our conversation after the question. And that last phone call would be the last time I would hear Judy’s voice, her laugh, or her children’s

voices sounding simultaneously to Judy’s. The bat mitzvah we attended in 2003

would be the last time I would see Judy dance, by herself, with her daughters,

and with Mark. I would see Mark dance again though, with Rebecca, their oldest daughter, at a future celebration in 2004. It was good to see Mark dance that

November in 2004, especially after losing Judy only eleven months earlier. She

would have been pleased. I imagine that somehow, Judy knows and is smiling on her family. She would be proud of them all. Despite their loss, they are

living. I know that is something she would have wanted.

Mark speaks:

Judy treated people with openness, warmth, respect, and kindness. She embodied the

golden rule. She wanted to be everybody’s friend and she wanted everyone to like her,

treating her in kind. One of her greatest disappointments (and hurts) in life was

when a person did not return her treatment in kind. It always seemed to surprise

her…however, true to her nature, she wouldn’t return the unkindness. She would

always give that person the benefit of the doubt, attributing it to a bad mood or

upbringing, or heredity. And, she would try for a positive interaction yet another time.

Judy had many wonderful traits (and) foremost among them were her gentleness and

sweetness. She never had a harsh word for anyone, never put anyone down. She always 183

tried to make people feel welcome and comfortable. She was conscious of those who might

be feeling left out and she would approach them, talk with them, and try to include them.

She often said that she attracted people on the fringe, the odd ducks and those

uncomfortable around ”regular” folks; she thought those people would seek her out and

talk with her. Perhaps they somehow sensed her non‐threatening and gentle nature, and

consequently, were less afraid to open up.

Mark’s words strike me—is that what Judy did the night in April 2003 at the bat mitzvah when I arrived at the dinner table, the only person who was handicapped and clearly not yet comfortable with it? I wonder…but ask another question:

“What was Judy passionate about?”

Judy was very passionate about her artwork. She loved drawing and was constantly

doodling on whatever scrap paper was lying around. Both Rebecca and Simona do this,

too, which is fine, except when the doodling is on homework or some other school paper.

Judy was always concerned about whether an illustration was drawn properly and

expressed the idea she intended. She would often spend a lot of time reworking a piece

until she was completely satisfied.

Judy liked sci‐fi and action films, like Terminator and Die Hard—that might surprise

some people. She also loved comedies like Four Weddings and a Funeral. She loved

Disco, and of course, Israeli folk dancing.

Judy did love Israeli folk dancing. The reason? Because it was how she and

Mark met in January 1984. Mark, who came to western New York to work for

Kodak after graduating from Massachusetts Institute of Technology (MIT), had started taking the dance class at the Jewish Community Center (JCC) to meet people. The two hit it off and began dating. Mark went back to MIT in fall of 184

1987 to complete his doctorate. During those three years, from 1984 to 1987, both

Mark and Judy made efforts to see one another as frequently as possible. Mark would make the six‐hour drive on weekends, and Judy would fly to Boston to see Mark. After Mark’s graduation from MIT in 1987, Judy and Mark would

marry on November 18, 1988.

Mark and Judy maintained a three‐year, long‐distance relationship before marrying, going back and forth from Boston to Rochester and from Rochester to

Boston. This is very similar to what my husband, Bob, and I did, too.

Bob would drive six hours from Rochester every other weekend to see me in

Boston. He would arrive late on Friday night and leave after dinner on Sunday night to spend as much time as possible with me. I would fly from Boston to

Rochester to see Bob as often as I could afford—like Judy did for Mark. Bob and

I managed to maintain our long‐distance relationship for two years. After the

first year, we became engaged. I had already experienced cancer. Bob had just

entered my life when I was first diagnosed in 1991. Though we weren’t yet

married, or even engaged, Bob stuck with me, helping out with Gary and caring

for me when I came home from the first surgery in September 1991—and just to

give some perspective, we had only met three months before, in June.

Mark has also reminded me of Bob in other ways, too. The two men are

equally tall—both over six feet with inches to spare. Both wear glasses, but that’s

where the physical similarities end. The two parallel each other in their

sensitivity, loyalty, and unfailing love. Even after almost three years beyond

Judy’s death, Mark confides:

Judy always told me that she didn’t care where we lived, whether we had money or not, as

long as she was with me. And I was, and still am, crazy about her. I know that I need to 185

focus on, and be thankful for, the special relationship we had—short as it was, rather than

bemoaning the loss of all those future years (we could have had) together. I know that

intellectually, but emotionally, that’s another story.

I am so touched by Mark’s words. As I sit here and write, I can’t help but weep at the man’s memories and deep, deep love for Judy. I know she knew

how he felt, because we talked about it; I also know she returned Mark’s

feelings—and yet, that knowledge only makes more cavernous my sorrow.

Though I know better, I am forced to ask, why?

Judy often had feelings and dreams where she would then know something was going to

happen and she’d be right. A friend of Judy’s told me recently that in December of 2000,

Judy had confided in her that she felt she was going to have to deal with cancer again.

And, Judy was right. Judy was diagnosed with breast cancer for the first

time in March 2001. But Judy’s friend had said that Judy felt she was going to

have to fight cancer again? The reason why is simple: Judy was first diagnosed with cancer in 1981, twenty years earlier. She had just graduated from Rochester

Institute of Technology (RIT), interestingly enough, where I now teach.

Judy’s first cancer diagnosis was a rare form of cancer called

Mucoepidermoid Carcinoma, located in her neck. It is rare, and aggressive. Two

years later in 1983, that same cancer returned. Judy fought once more, though

the second time around the surgery to remove the cancer left extensive nerve

damage, affecting the right side of Judy’s body. She had to retrain the muscles in

her face and learn how to walk again.

Mucoepidermoid Carcinoma is a cancer that affects the salivary glands. It is

rare and tends to affect twice as many women as men, typically occurring in a

patient’s forties or fifties, though the cancer can appear in persons ages one to 186

seventy‐eight.25 Also, approximately nine percent of the cancers diagnosed tend

to spread to the lymph nodes. Forty percent of the diagnoses lead to recurrence.

Surgery is the most common form of treatment.

Twenty years later, in March 2001, just four months after confiding in a friend that she felt another battle with cancer was imminent, Judy was diagnosed with micro‐calcifications in her left breast. The pathology confirmed cancer, non‐ invasive Ductal Carcinoma; unfortunately, after the first lumpectomy, doctors discovered that the cancer was invasive by about two millimeters. A second lumpectomy was performed, and then, radiation. All would be well for just over

one year until September 2002, when Judy would be diagnosed with a recurrence. This time, doctors recommended a mastectomy and chemotherapy.

Courageously, Judy went with the doctors recommendations, but also chose

to have reconstructive surgery at the same time as the mastectomy in October

2002. Judy had had radiation the year before, so that was no longer a viable

treatment option. Judy would have approximately one year from her surgery

date before being diagnosed with a recurrence, yet again, in October 2003:

In the summer of 2003, after recovering from the mastectomy/reconstruction surgery as

well as all the follow up work, we were able to go bike‐riding again. I helped coach

Simona’s soccer team, and two nights a week, Simona’s team played on the fields behind

the town hall. I remember how happy Judy was when she finally had the energy and

stamina to bike again from our house to the fields. That summer, we took a week‐long

vacation at the Chautauqua Institute in New York with family. We brought our bikes

and Judy was thrilled at discovering she could ride all over the campus, except for a few

hills. Over the summer, the two of us would bike down the (Erie) Canal path and go for

25 From The World Journal of Surgical Oncology, 1:1, 25 February 2003; see www.wjso.com (August 26, 2006) 187

dinner or ice cream. The last time we went was in August 2003. The bike ride was

harder for Judy. She kept having shortness of breath. Little did we know what was really

going on….

What was really going on was the return of the breast cancer. This time, the

cancer would cause fluid to build up near Judy’s lungs, and finally, her heart.

Mere days before a scheduled appointment in January 2004 at the well‐known

Sloan‐Kettering Cancer Center, Judy was hospitalized. It was a Thursday. I

remember it well. That day, a mutual friend, Amy, called to tell me what was going on. I’d planned to go see Judy the next day. That same night, however, I

received another call from Amy. The news was not good. Judy was dying.

I wanted to see Judy so very much when I heard, but was told that only

family was being allowed in (to the hospital room) for visits. I would find out in

the following weeks that Judy had asked for me; she wanted to see me, too. The

regret I feel about not having been there is palpable, even today. That fall, I

would meet another breast cancer patient named Stephanie, who is also included

in this book. I would apply lessons learned with Judy to Stephanie, and for that,

I am forever grateful to Judy.

Judy, in her “gentleness and sweetness,” as Mark says, showed me the way to look beyond myself and my experiences, to see and help others in need.

Basically, Judy was the first person I talked to about this book. It was in our few

conversations that the idea for this book began to grow, and it seems now, that it

was Judy herself who also showed me the way to helping the other women who

followed. That is why my heart dedicates this volume to Judy, a woman I barely

knew for ten years, but knew well for only a period of months. In that period of

months, Judy taught me more than I had learned in my entire 32 years before. 188

I wish Judy were here to tell the rest of her own story, to say how she felt when she learned she had to have her left breast removed, to tell what it meant to know that she had two daughters and breast cancer runs in families, to talk about the small things, like how she felt when she lost her hair, or what she thought might have contributed to her diagnoses. For a long time after Judy’s death, I would hear her voice, urging me on, to write, to find more participants for the book, to make the book as good as possible so people would know, would understand, Judy and Stephanie, Jacquie, Marina, Kathryn, Alanna, Joan, Teri,

Ivy, Maxene, Sue, and…me.

*****

Mark speaks:

Judy’s parents treated me like a son during the entire experience. Her Aunt Harriet and

Aunt Marcia were also helpful, bringing lunches to the hospital on days when Judy was

receiving chemo. I looked to Judy’s mom, Ruth, for guidance often, especially when the

chemo had to be stopped because Judy was having trouble breathing. That was one of the

last treatments Judy had. That was an extremely frightening time. Judy and I never

talked about (death), I was just so focused on what needed to be done, trying to remain

hopeful and helpful, though the situation seemed so hard, so difficult. I just couldn’t talk

about death with her. Maybe I couldn’t imagine it happening, or maybe I didn’t know

how to deal with it. And I didn’t—I know that now. Maybe I wanted her to keep trying

and felt that talking about death would not be helpful. I don’t know the answer and I

don’t know if I would want it to be different. We never said goodbye. I don’t know if I

could have…I still can’t.

Neither can I.

***** 189

I want to close the chapter with Judy’s words, words from one of the phone

conversations we had in spring 2003. I had asked Judy what she would want her

family to know about her, something I could put in the book—not with the idea

that she was going to die—but with the idea that she and her family could look

back, and know what it was she was feeling at that moment in time—it was a

question I never asked again in any of the other interviews because of what

followed. She answered me like this:

“I want my daughters to know how much I love them, now and always. I want Mark to know how much he means to me. He is my life. I’m proud of

Rebecca and Simona. I want them to know that. I love my mom, my dad, my aunts, Dave, Shelley, Sam, and Michael...all of my friends. I really have so much to be thankful for. It’s hard to remember sometimes. But that’s what I want them all to know, how much they mean to me, and, that I’ll always be here for them….”

And I think she is.

Rebecca’s Story

We need to start at the beginning, and the beginning is one of the most difficult parts to remember. Previously, I have not been able to relive the moment on paper but feel courage to do so now—so dark is the nucleus of my birth as a survivor. It did not start with cancer, but cancer is the result:

“Fuckin’ Bitch! I’m gonna kill you! I’m gonna beat your ass bloody! How dare you fuck with me! Are you listening? Huh? Huh?” he pulled and twisted at my left breast as I struggled to free myself from his grip. Luckily, he held the baby in one arm, so I only had to fight the other.

This is where it all began. In front of a dilapidated brick apartment building in the city of Brockton, Massachusetts with patchy brown grass that never turned green, and beat‐up old cars with addicts shooting up inside, parked along the curb. I was eighteen and a single‐mother. My parents had told me to leave their home after my son was born. I was alone and I was scared, but it was worse when I wasn’t alone.

My son’s biological father was abusive. He tried to kill me multiple times and succeeded in seriously injuring me, also multiple times. Every Sunday, before the last and final attack that was so serious the judge suspended visitation rights and issued a permanent restraining order, I would endure something very similar to the memory written above. The incredible emotional and physical stress of it all manifested quickly. My son was barely six months old when I suffered my first focalized seizure, though I didn’t know it was a seizure at the time. Many years later, I would learn about a study done by Harvard Medical 191

School that listed pregnancy as a main cause for the particular tumour I

developed in my brain. A ridiculously small range of women of child‐bearing

age, something like .73% to 1.34%, would develop a brain tumour called an

Astrocytoma, or star tumour, during or just after pregnancy. The physical stress and increased hormones of pregnancy may have been one factor, but I think that the emotional and mental stress of the events after my son’s birth played a much

larger part in my diagnosis.

It wasn’t until almost two years later, just weeks after my twentieth

birthday, that I would learn I had a malignant brain tumour growing in the right

frontal hemisphere near the motor‐cortex. The motor‐cortex is the part of your

brain that controls mobility, and because my tumour was lodged nicely within the right side of the motor cortex, it meant that the mobility on the left side of my

body, my arm, my leg, would be affected. Though it was 1991, and surgeries and

treatments for brain tumours had come far with the increasing rise in technology,

there was still a great deal that doctors did not know.

I was treated at Brigham and Women’s Hospital in Boston, Massachusetts

by Dr. Peter MacLaren Black, Chief of Neurosurgery at both Brigham and

Women’s and Children’s Hospitals. Dr. Black led a team of area researchers on new treatment ideas for brain tumours. Because of this, after deciding that the tumour was inoperable (while inches into my brain and me awake in the operating room with a valium drip telling doctors how it felt when they electrically stimulated different areas of my sick brain), I was recommended to be one of two patients to begin an experimental form of radiation. That radiation treatment bought me ten more years of life, or so it seemed. Again, since 1991, 192

radiation therapy has been discovered to also cause brain cancer anywhere from

ten to fifteen years after treatment.26

My cancer returned in 2001—exactly ten years later. However, radiation is

still a recommended form of treatment because the benefits outweigh the risks, but only if statistical averages are to be believed. Chemotherapy has been found to be most effective on tumours, especially the one I was first diagnosed with in

1991, an Astrocytoma. In 2001, a new tumour began to grow out of the radiated

mass that sat rotting in my brain for ten years; it’s called an Anaplastic

Oligodendroglioma. Quite a mouthful, isn’t it? Turns out to be quite a head‐full,

too. The finger‐shaped growth was making its way to the other side of my brain,

and along the way, touching more eloquent areas, like that of speech. I know

this because the seizures that I suffered at least ten times each day from 1998 to

2001 would interrupt my speech and my ability to find words—only briefly, but

still. My mobility was being compromised as well. I suffered from what is

commonly called “drop foot” or when your ankle is like a well oiled hinge that

your foot just swings upon, as if a door blown both ways by strong winds. By

2001, I walked with a brace, not anything like the semi‐prosthetic thing I must use now, yet I still needed it to walk. I also relied on a cane. After a few bad spills, I needed to also get a handicapped tag for my car. I was twenty‐six years old when I started to get the seizures again. It was February 1998.

I had completed my Masters thesis, a creative piece based on a ship’s log recorded by a nineteenth century sea captain’s wife. Her name was Maria Clark.

Her tumultuous journey on the seas with her husband, living among men,

encountering a Confederate pirate ship looking to steal the whale oil so

26 See American Cancer Society; www.acs.org 193

painstakingly collected by the crew, and then, being taken into the Confederate captain’s chambers after capture, all seemed a much easier life than mine did at

that time. I couldn’t go to a movie because any loud noise or bright, flashing

light would startle me into a seizure. I couldn’t take my then nine‐year‐old son to the playground; I couldn’t take my son anywhere. I couldn’t drive. My freedom, at twenty‐six, had vanished, and only three months before graduating with my Masters.

I began taking a litany of drugs to aid in controlling the seizures, but nothing helped. I ended up taking enough drugs to put a bull elephant to sleep, just to minimize the seizures to ten a day. There was only one full day during that period of years when I did not suffer from any seizures. I’ll never forget it.

My doctor had switched me to a new drug, also used for anti‐anxiety (most neurological drugs crossover for varying neurological symptoms). He told me to try it with a little wine. It worked, at least for one day. The freedom felt in that one day was wonderful and crushing at the same time. I remembered what it felt like to be a healthy young woman again, to be able to walk out into my yard and not fear a debilitating seizure, to take an evening stroll with my husband and son and say hello to neighbors, not feeling hurried or rushed that we needed to get home before a seizure happened. Remembering that freedom was a wonder because I remembered who I was, and for that same reason, it was equally crushing to my spirit when I awoke the next day to a seizure, one of at least ten that day and every day thereafter until August 27, 2001, when the finger that showed up on my July scan was scheduled to be removed.

The day I learned the cancer was back was a strange mixture of relief,

vindication, horror, and fear. I was relieved, as strange as that may seem,

because it meant that doctors now had a reason to rip out the tumour that was 194

plaguing me. Yes, there were risks, but I felt I couldn’t continue to live the way I

was. My mobility was increasingly compromised as the neurons and pathways to my lower‐left extremities were being literally electrocuted ten times daily. The first surgery in 1991 was only exploratory, and after five hours of probing, Dr.

Black decided to sew me back up and get me signed on for what was then called

“stereotactic radiation,” though it is now more commonly known as “radio

surgery.” The reason why the 1991 surgery was unsuccessful was because, at the

time, there was not much definitive work on brain mapping, hence the electrical

probing. I didn’t know it yet, but neurosurgery had made leaps and bounds

during the decade between my diagnoses. Using MRI technology with special

titanium tools, doctors could successfully, and more importantly, carefully,

navigate the complicated brain to remove as much tumour tissue as possible, and

as little normal tissue as possible.

The vindication I felt on that July day in 2001, my thirtieth birthday in fact,

was because of the overwhelming sense I’d had all year that the cancer was back.

I even wrote about it multiple times in my journal:

October 2000

I know it’s back. Though the scans come back negative, there’s got to be a reason why

everything continues to get worse. Dr. Black said that because of the radiation, the scans

are harder to read. I’m so exhausted from it all. The pills haven’t helped. What more can

I do? I haven’t even the energy to consider anything. My brain feels like it’s surrounded

by a dense fog. I’m just incredibly tired….

The medication I was on slowed everything down. Basically, the medications

were meant to dampen down the system to help control the seizures, but also

dampened everything else in my body. I was no longer menstruating. My metabolism was at a stand‐still. In the first month on the medications, I gained 195

forty pounds. By July 2001, I weighed over two‐hundred and twenty pounds.

At 5’4”, it was a lot to carry, especially with difficulty walking. Previous to

February 1998, I weighed one‐hundred and thirty pounds, a comfortable size ten.

By July 2001, I had stopped wearing bras because no matter how big they were, the tightness of the article would break blood vessels along my back where the flesh was pushed either up and in or down, both bulging over the elastic and

Lycra bottom of the bra. And, as much as I felt relief and vindication at the diagnosis, I also felt utter horror and the sum of all my fears in one single moment.

Paralysis was the prognosis if the 1991 surgery was more than

exploratory. And according to Dr. Black, paralysis was still a possibility in 2001.

Though the surgery was more advanced, some normal cells would suffer

permanent damage, as well as temporary damage from swelling in the surgical

site. So, I was facing temporary, and perhaps even permanent, paralysis.

The one thing I feared more than anything else since my 1991 surgery,

more than even death, was paralysis. To be trapped in one’s body with an active

mind seemed like hell. I was afraid that perhaps more than my mobility would

be affected—considering the occurrence of difficulty I’d been having during

seizures with articulation. I made Dr. Black swear to God, to me, to whoever he

believed in most, that he would not remove any part of the tumour if he thought

it would cause paralysis. He agreed…to not remove any part of the tumour that

would cause permanent damage. Permanent. I missed that qualifier in my

horror and fear. It was a detail I could not afford to miss however.

196

On August 27, 2001, I went into the surgical suite at approximately seven‐ thirty in the morning. I was told not to eat anything, but had eaten a garlic bagel

smeared with both butter and cream cheese anyway. A Russian doctor with a

thick accent, a man I’d never met before, introduced himself. He’d be prepping me for the surgery—to me this meant the great unknown. The drugs had

improved since my previous surgery in 1991, but the use of the stereotactic, a

halo made of metal affixed to the skull with screws (yes, screws), was still in use,

much to my chagrin. I had been told by a ridiculously ignorant neurosurgical

nurse that stereotactics were no longer being used during surgery. Though her

stupidity took away some of my fear, it was worse to find out, as the Russian

doctor shaved my head, that in fact, I would be getting “screwed.”

The improvement in the drugs was a mixed blessing. While in 1991, I looked

my doctor in the eyes as he affixed the metal halo in my head, even walking to

the OR on my own, this time, I didn’t have that choice. The drugs could put me

into a light sleep at the push of a button. As a result, the Russian doctor shaved

much more hair than necessary. And as much as you may frown at my care of

hair, dear reader, know that when your appearance is to be compromised drastically, even if only temporarily, you will not be nonchalant about it either.

Also, because he put me to sleep during the stitching, he made the stitching too tight—which contributed later to a raging Staph infection in the incision that caused a ripple in my life‐long pond.

I was awake for a good deal of the seventeen‐hour surgery. The surgery

itself did take a long while, but for at least six hours of the seventeen, the doctors,

nurses and technicians attempted to put me in the correct position within the

MRI surgical unit—not an easy feat when dealing with over two‐hundred and

twenty pounds of practically dead weight. When the surgery finally 197

commenced, because I had braided my more than twenty‐four inches of chestnut brown hair in a single‐braid down my back, that braid became like the pea to my proverbial princess. At one point, I recall trying to get someone, anyone’s, attention to move the braid, and in my attempt, realizing I could not move my left side—none of it. My voice had shrunk to not much more than a whisper. I was now beyond horror and fear and had entered into anger. I started pounding as furiously as possible at the blue surgical sheet draped over my head and body with my right hand, becoming increasingly agitated, that is until the anesthesiologist, an Asian‐Indian doctor with a last name that sounded like

“surreal,” told me that I would be going to sleep for a little while and not to be upset. I slipped into a dream where I was faced with an expanse of white sand beach, as if I were approaching it from the ocean. There were palm trees and large, colorful tropical flowers. The waves ran up onto the sand leaving a trail of foamy white bubbles behind before receding backward toward home. It was a vision of Hawaii, my dream vacation, the place I wanted to see before death more than any other locale on earth.

I awoke, though only in consciousness, to a harsh voice yelling at me to open

my eyes. My anger at being paralysed, especially after making Dr. Black swear

he wouldn’t remove anything that would jeopardize my mobility, was still there.

And now, I was angry at this voice. It was female and sounded frustrated. A

male voice then started yelling, and strong male fingers began pushing at my

breast plate, “Open your eyes, we need to know you’re awake.”

I could barely speak, but I was so furious at the gall of these people—after all, I was exhausted. Seventeen hours in surgery is very tiring, even for the patient. I slowly lifted my right arm without opening my eyes; they stayed tightly closed in defiance, and turned my hand, curling down all but one 198

finger…the middle one. Then, the male voice laughed and said, “Well, at least

we know you’re awake, even if you won’t open your eyes.”

When I did finally open my eyes, it was because my husband, Bob, and son,

Gary, were coming in to see me. I had taught Gary the American Sign Language

symbol for “I love you,” in case I couldn’t speak after the surgery. I made the

gesture with my right hand when I saw him enter the room and then began to

cry uncontrollably. At that point, Bob and Gary were rushed out of the room

because the monitor following the rhythm of my heart beat was making loud

beeping sounds in quick succession. I was going into cardiac arrest. Looking at

Bob’s grieving face and seeing the confusion and sadness on my son’s innocent

visage, then, having to sign “I love you,” drove me mad with deep grief. What

had become of me? What will become of them? My heart was breaking and

everyone could hear it.

My grief lasted for several days. I would try to put on a brave face for my family and in the midst of attempting to smile and laugh, would break into uncontrollable weeping. My husband thought that perhaps I was suffering from a psychotic episode from the surgery. Residents in attendance had no answers for him, but Dr. Black did. When I heard his voice, the anger rose up again.

“Dr. Black,” I said as loud as possible, though my voice was still just above a

whisper, “I know I can’t walk now, but when I can, you’d better run!” I was

serious, but Dr. Black only smiled at me and spoke to Bob outside of the room.

He reassured Bob that I was fine, and that the swelling was contributing to the apparent mood swings, but that it was normal for patients to feel grief after such

a difficult and life‐altering surgery. 199

I think that moment of reassurance set Bob on his future path. As soon as

Dr. Black said that I was normal, Bob would see me as nothing less. This defensive psychological trick, also called denial, would help Bob endure the almost two years of constant and total care he would need to administer. My paralysis would prove temporary in the face, torso, and left arm, but more

permanent from the hip down. But Dr. Black had kept his word. The surgery,

only in combination with the years of constant seizures, severed the connections

in my lower left extremities—alone, the surgery would have only caused

temporary paralysis. Use of my ankle, foot and the muscles in the calf, were

totally gone—these were seriously affected prior to surgery. The hip and knee

were at a maximum of twenty‐five percent capacity. It wasn’t much, but it was

enough to get me back on my feet again. I would take my first steps in a

rehabilitation hospital in Rochester, New York, just two weeks later.

*****

There are so many moments that make up the memories of my more than

fifteen‐year span of cancer experience. If I were to share everything, it would

take more pages than I could fill in a lifetime. Today, I am just telling you a

portion of that story. It will be hard to pick and choose the moments I need to share, but you deserve to know, dear reader.

*****

During my three‐week stay in the rehabilitation hospital, a nurse who

washed my existing hair chose to not put a Tegederm, or plastic covering, over the still‐healing, too‐tightly stitched incision. Within twenty‐four hours, yellow ooze would seep out from between the folds of scalp and dark surgical thread. 200

The doctors at the rehab hospital kept taking samples of the ooze and put me on

oral antibiotics, but were unable to properly diagnose the situation. I’m still not

convinced that they did not know—how could they not? But because I was

being treated by a surgeon in Boston, I think they made a decision to let me go

from their hospital, knowing I was due for my post‐operative appointment with

Dr. Black the following week. And sure enough, Dr. Black no sooner walked into

the exam room when he diagnosed the infection. However, unlike other areas

infected by Staph, if the brain had also become infected, it would only be a

matter of time before my death—not from the cancer, but from the infection.

Luckily, I wasn’t aware of all this—I knew I was going through a litany of testing

and had been fitted with a semi‐permanent IV line in my arm to receive

intravenous antibiotics for the infection, after another neurosurgery to physically

remove the infection from my brain . Again, my luck held out and the infection

had only gotten as far as the skull. Yes, it is rather absurd to call this luck, but

really, it was lucky. I begged to be put out totally for the surgery to remove the

infection, and my wish was granted. When I awoke, my two front teeth hurt, as

well as my throat, but I found that under the new, larger incision site, I now had

a layer of titanium mesh to replace where there was once healthy, then infected,

skull.

The new surgical activity around the brain caused swelling, and I found myself paralysed yet again. But that would be the least of my problems. Two weeks after the surgery, I would be rushed to a local emergency room because of apparent blindness and frequent urination. The steroid, Decadron, because it was given in two major doses and in quick succession, caused Diabetes. I became what is commonly known as a Type‐2, or adult‐onset, Diabetic. My thirtieth year was not turning out to be particularly good. 201

The same day I had learned my cancer was back, my birthday, I was also

told by my local dentist that I needed to have a root canal (my first, and luckily,

only), and that same week, though I had not gotten a period in almost nine

months, I began hemorrhaging. As my teen son would say in his American

slang, “Good times….”

Five weeks of intravenous drugs to really quash the Staph infection would be followed by chemotherapy treatments, beginning in December 2001. I had

also planned on returning to work as a teacher that same week. Yes, it was quite

insane, but I held the health insurance for myself and my family through

Rochester Institute of Technology, where I have taught writing and literature for

the better part of a decade. My husband, being self‐employed, had no insurance.

Working was necessary, but turned out to be one of the best things that could

have happened to me.

I needed to regain a sense of self, independence and capability. Everything

was taken from me in one fell swoop, my mobility, my health, maybe even the major extent of my life—to teach, to share my knowledge, affect others in a positive way, help them—all made me feel useful, and human again.

My entire life has been funny, not in a humorous way, but in a strange way.

Most doctors typically recommend that patients going through chemotherapy not interact with one‐hundred strangers daily because of the increased risk of infection from lower white blood‐cell counts, and my doctor was no different.

However, I was different. I chose to ignore the increased risks, something I’ve chosen to do about everything in my life, because the increased risk means that something really great will be waiting on the other side of the experience. It

happened when I chose, against the wishes and urgings of family, to have my 202

son at the age of eighteen. It happened when I took a chance and invited a man

from Rochester, New York, someone I’d never met nor even seen a photo of and

had only spoken to on the telephone, to come visit. And “it” has happened over

and over again in my life—even the cancer experiences themselves are among

the many “its” my life has evolved from. “It” is the luck of the Irish, as my

ninety‐two year old maternal Irish‐Catholic grandmother with cinnamon‐sugar

colored hair would say, just after complimenting you on your hair or clothes,

despite her blindness. “It” is “mazel,” or luck, as my ninety year old Russian‐

Jewish paternal grandmother would say, right after telling you you’re too thin

while setting a heaping plate of cookies and brownies on the table, lit by the

glow of the Sabbath candles she still lights every Friday, though there’s no one to

see it but her, and God. So, I rejected the decision to stay isolated, continue to sit

(because it was all I could really do) and wallow in grief and misery at my

situation; even though it was recommended by my doctor (not the wallowing in

grief and misery part, just the staying away from people part). The decision was

still mine to make. Doctors aren’t gods, they’re usually men, sometimes women,

but ultimately human beings. Though my doctor had my best interests at heart,

no one knows what is best for me better than me. So, off I went in my wheelchair

to work, though this sounds like I actually propelled my movement—I didn’t,

but my husband did.

Bob, my husband, was my surrogate. While my hands could not bathe me, dress me, feed me, groom me, and my legs and feet could not move my body as necessary; Bob’s hands, feet and legs could. He would get up every morning, get our son, Gary, ready for school while simultaneously helping me to shower, dress, eat, and then, he would put me in the car while Gary also hopped in on his own (the man’s a saint, but he wasn’t carrying an eleven‐year old to the car). Bob 203

would drive Gary to school, then me. Bob would push me in the wheelchair to my classroom by eight o’clock, when my first class began, then would return to the classroom at twelve‐noon to wheel me to a nearby faculty lounge where I would eat whatever lunch he made or bought. He would sit with me there for almost two hours before pushing me back down to the classroom to meet my final two classes, one beginning at two o’clock and the final class beginning at four o’clock, ending at six that evening. After Bob would push me to the classroom for my afternoon classes, he would run to pick up Gary from school; help Gary with homework, feed him a snack, then off to soccer practice—which

Bob coached—then, take Gary in the car and head back to RIT, where the two of them would fetch me and my heavy books, piles of essays, etc. to bring me home.

We didn’t and still don’t live particularly close to the campus. But Bob proved to be as unstoppable as I counted myself to be. He was unfailing in his duties and truly never once became frustrated or angry. I never saw him grieve about our situation either. I trace his stoic attitude back to that moment in late

August 2001 when Dr. Black told Bob in the hospital that I was fine. Dr. Black, our trusted doctor, indeed, my doctor of choice for over ten years at that time

(though now steadily approaching the sixteen‐year mark), the man we made annual five‐hundred mile, six‐hour pilgrimages to see, hear and listen to, had given what Bob considered to be the definitive word on my condition, “She’s fine.”

When I remember Bob’s incredible strength during that trying time, I always

think of Shakespeare’s Nick Bottom from A Midsummer Night’s Dream after

waking from what he calls “Bottom’s Dream” (“…because it hath no bottom…”)

in Act IV of that play. Bottom approaches his fellow actors and says with gusto,

“Who are these lads? Where are these hearts?” I could answer that question— 204

my heart and Bob’s heart were one and the same. Though Bob never said those

words, he didn’t, and doesn’t, have to. His actions were loud enough for the

entire world to recognise and understand, including me.

One day at school, during the final class of the day by which point I was

always horribly exhausted, there was a fire alarm, or what we thought was a fire

alarm. In reality, it was not a drill, it was for real. The classroom was located in

the basement of the building and the only way out was either up several flights

of stairs to the main level or down stairs to a garage that led outside. Well, I was

in a wheelchair—so neither was an option for me.

One of my “colleagues,” a white‐haired tall man from some other

department in the college, kept trying to convince my twenty‐eight students to push me into the stairwell, leave me there, and exit the building, per the fire drill

guidelines for the handicapped. Yes, you read correctly. The man, who I

guesstimate from his weathered skin and white hair, must have been close to his

sixties at the least, actually wanted to push me in a stairwell, where I was to wait

for some minimum‐wage earning security guard to come and find me and save

me from the burning building. And worse, that was actually the prescribed

action for the situation by the Institute policies. To blindly follow is the

ultimately sin, to follow with your eyes open is worse. My students felt the same

way, though I encouraged them to leave the building for their own safety. The

white‐haired professor abandoned us after the students refused to listen to him.

One of the male students had run up to the main level to get someone to engage

the elevator if possible, otherwise, the plan was for five or six of the students to carry me (no easy feat at two‐hundred and twenty pounds of dead weight) in my wheelchair, down the stairs and out through the garage port. I was not happy with this plan because I worried that someone could get injured while carrying 205

me. No matter what happened, those students would not leave me. Even when security did finally come to engage the elevator, several students insisted on coming with me, the rest agreed to exit through the garage but promised to come and find me outside.

I was simply overwhelmed by the show of concern and genuine caring on the part of my students that day. I surprised them with a pizza party at the next

class meeting, and after that, things were completely normal. Not one of those students ever asked me for a favor of any kind for what they did that day. That

day was a day I’ll never forget, not because I was terrified (though I was), but

because that day I saw the human spirit in its purest form, good and kind and

filled with genuine caring for other human beings. That day made me want to

live to do the same for others. I became determined to not only get out of the wheelchair but to become independent enough to raise both awareness and funds for others suffering like I had.

If not for the cancer, would I have ever witnessed anything like what I saw that day of the fire? It has been five years since then, and I haven’t witnessed anything of the kind. Because of my cancer, I was in the wheelchair, and because of that, I had the opportunity to see something I quite possibly may never have been able to see in my lifetime—humanity at its best. It’s easy to see humanity at its worst, and the cancer also gave me opportunity to witness that, but to see humanity at its best, well, let’s just say you can turn on the evening news each night and never see anything like it. There’s that “it” again…just my kind of luck!

I did finally get up and out of the wheelchair. After my chemotherapy ended in August 2002, I had a few short weeks to get ready for Gary’s Bar 206

Mitzvah, scheduled for November 23rd of that year. I religiously went to physical

therapy three times a week to get back on my feet, and I did. I was using a

walker and learned to use a cane, but just days before the Bar Mitzvah, I suffered

a serious fall.

One of the drugs in the chemotherapy regiment was what is termed “neuro‐

toxic,” which means bad for brain function. It’s a good thing if it means bad for

the function of brain tumours, but not so hot when it means interrupting typical

brain function. My mobility and balance were compromised by the paralysis,

but the chemotherapy killed what was left of my physical equilibrium. I had no

balance. I could be walking along, perfectly fine, and suddenly feel nothing on

my left side and literally fall over.

At this point, five years later, with strength training and range‐of‐motion cardio five times weekly, I can walk around my house completely unassisted, but still need the walker to be independent beyond that. I sometimes use a cane when meeting friends for lunch, or just hold Bob’s hand to go out to dinner, for an evening stroll, or, for some basic errands. It may not seem like much, but it’s a lifetime from the days when I could barely lift the walker out of the car on my

own. If I fall, I can get myself up—heck, if I had better balance, I could bench‐

press Gary! Without question, I am in the best physical condition of my life; I’ve

never been stronger. Though I’ve had the use of my left leg and my balance in

years past, my aerobic stamina is better that of a thirty‐year old male, and I can lift tremendous amounts of weight with both my arms and my legs. I can row at

forty strokes per minute, swim laps for sixty minutes or more without getting

tired, and walk for hours with energy to spare. 207

Cosmic irony, it worked for the Greeks, and apparently, for me as well. All

this strength, and yet, I still need assistance to walk. I used to grieve for my

mobility and I won’t lie, I do miss having grace. When you have to hike your hip

to walk, you don’t exactly have grace in your steps.

In high school and even before, I was a dancer. I took what was called jazz,

but now would be something more akin to the beginnings of hip‐hop dancing, as

well as classic ballet. I was also a cross‐country runner, I loved to swim in the

ocean on Cape Cod close to where I grew up in Massachusetts—I was not

athletic exactly, but I was active. The years preceding my 2001 recurrence after

the seizures began in 1998, were nothing but a void of sitting and waiting. After

almost four years of that, I feel like my mobility, though I now have paralysis, was restored. I think of it as something like the story of Jacob in the Hebrew

Bible, the Chumash.

Jacob fought with an angel, or a man. The word used in the Bible is eesh, which means man, but the word is interpreted by many scholars as meaning an angel. Jacob was perfectly healthy before this struggle, and after, he walked with a limp because during the struggle with the eesh, the eesh wrenched Jacob’s hip.

However, Jacob’s name in Hebrew is derived from the phrase, “One that God has made crooked,” or Yaacovel. After the struggle with the eesh, Jacob, or

Yaacov in Hebrew, was renamed by God, Israel, which means, “One that God has made straight.” So in Jacob’s new crooked walk, he was actually “straightened”

by God, learning humility and appreciation. And I think it’s something much

the same for me.

I studied at a Lubavitch Yeshiva, or orthodox Hebrew day school, in Boston

from first grade to eighth grade, where half the day was spent speaking Hebrew, 208

the other half in English. Though I haven’t formally spoken in Hebrew for years,

I still own the language and will forever. I would probably be classified by other

Jews as a cultural Jew, or someone who still holds to traditions but does not

necessarily head to temple on the Sabbath. However, I don’t particularly find

much merit in this evaluation—maybe some others would call me a Zen Jew

because of the Buddhist teachings I’ve incorporated into my life, but no matter

what others may assign, I am a person of faith. I believe I am not alone in this

wide world. My life speaks volumes to that end. Every time I take a step, I am

reminded of that fact. Maybe coincidence is to be blamed, but so many, and so

often?

That’s harder for me to believe than in a greater being that I can’t see, hear, smell, or touch.

I have faith in myself, and in the world around me. When I was first diagnosed at twenty, estranged from my family, a single‐parent in a violent, abusive relationship, just pink‐slipped from the job I’d held for three years because my abuser was harassing co‐workers to that end, no money, no apartment (I had to move out because I was behind on the rent and couldn’t

pay), no car (it had been repossessed a few weeks before), nothing to my name but the clothing on my back and the baby in my arms. Yet somehow, someway, I

found Dr. Black, one of the top neurosurgeons and brain tumour researchers in

the field, who gave me excellent medical care regardless of my lack of health

insurance and money.

And just a few weeks before, my grandmother, tired of not seeing her new great grandson for her son’s sake, asked me to come live with her before we

knew about the cancer, but just after I’d lost my job and apartment, and car. Bob 209

had come into my life also just one month before the diagnosis in 1991. Though

we had only started dating in June 1991, Bob came and stayed at my

grandmother’s home for several weeks to help care for me and Gary after the

September (1991) surgery. Still not convinced? That’s okay, you will be. Even if

you don’t believe that God had a hand in my fate, you must at least concede that

I have plenty of “it.” I’ve got “it” in spades, whether you think of “it” as the luck

of the Irish, or just plain, old‐fashioned mazel—I’ve got “it” and “it” is here to

stay. That’s how I know that I’ve beaten cancer. That’s right, I’m cured.

It’s true—I am cured. Even if the cancer returns, I’ll beat it; so therefore, is cancer really a threat anymore? Sun Tzu said something similar in his Art of War, if you know your enemy well and face your enemy with confidence, you will win. I’ve won, even if the cancer returns, I’ve still won because my mind is

cured, and nothing will ever change that—not even death. After Words … with commentary

Is it even possible to form words after reading about such experiences? I’m not really sure, but I owe it to the eleven women to try my best:

On March 19, 2006, at approximately 4:30 in the morning, Stephanie left this

world. She left behind her three children, Matthew, 8, Katie, 6 and Michael, not

yet 3, as well as her husband, Mark, parents, Linda and Bob Lagree, and many,

many friends. Stephanie was a month shy of her ten‐year anniversary with

husband, Mark, and two months shy of her 38th birthday. The last few months of her life were an incredible struggle. She was given her final prognosis in

January 2006. Her death so affected me, I have been writing non‐stop, both essays and poetry, trying to make sense of it all—but to no avail. I will share some of the poems and one essay here, in hopes of paying better tribute to the woman I watched die with more grace and compassion than I can ever hope to comprehend:

These Words

This is all I can do. There is no material thing, no chocolate rich enough, to salve my wounds. Michael DiRoma, twenty‐one, of Manhattan and Professor Housel’s Writing and Literature I and II classes, is dead. A car crash on I‐84 on his way home after finals.

Stephanie Gebo, mother of three, extraordinary woman‐warrior, is dying. She has maybe weeks, though she’s held on now for months. She can no longer articulate her thoughts— this is what happens when the end is near. The words of my student, Jeff Shane, whose grandfather passed two weeks ago, echo in my mind, “He could barely put a sentence together in the last few weeks—he was so frustrated.” This is what Stephanie’s mom,

Linda Lagree told me tonight about her daughter.

211

This, these words, on this paper, is the only thing I can do! It’s all I can do! It’s all…I

can do.

Commentary:

I wrote These Words in March 2006, after a student died just weeks before the end

of Stephanie’s life, though I didn’t know she would be leaving quite so soon.

When someone is expected to die, it’s strange but you still don’t actually expect

it. I was surprised when I heard Stephanie had passed away that Sunday in

March 2006. The next several poems were also written during that time, before

Stephanie passed:

For Stephanie I want to ask, but know better I want to give a piece of myself, to donate some of my life To help her. She is dying She has three children Eight, six and three. Her incredible spirit will live on, I want to say Her will to survive will carry her through, I want to believe None of it is true. My words are without worth Without substance And, can convey no measure. In the end, there are no words.

Saying Goodbye I didn’t get to say goodbye to him. He vanished into the ether of black and white newspaper in an article that was far too small to amply articulate the void. His nose was sharp, his mind, sharper. He was one of my babies—I birthed him into a more literary world where all good things do come to an end. She was one of my subjects, at first anyway 212

Then, a friend A treasured soul. Now, she is lying in the front room of her house Unable to speak Barely able to breathe. I don’t want her to die So infantile a wish For someone so schooled in life. The one thought Small as it is Remains a tiny light At least I get to say goodbye, Stephanie.

Unstoppable Woman Just tell death to “Fuck Off!” Though you can’t speak, turn your middle finger upwards and the others down You can still do that If death must come, let him come unwelcome Knowing of your distrust And dissatisfaction Let the bastard hang until he’s bored with you And then moves on to some other poor Poor, soul Just because death invites you and you reluctantly accept Does not mean you are not unstoppable You are still an unstoppable woman Death is no match for your life It will endure, even if your body cannot You will remain…forever

Commentary:

Still not ready to give up, I railed at the universe, arguing the lack of fairness in

Stephanie’s situation—as if the universe might acknowledge the very human concept of fairness. But being human, it was my last hope: 213

String Theory Can Kali stop death? Is it allowed? Will the world stop on its axis? Can three children grow up without their mother? It is allowed. The world does not stop spinning because of it. Why does the sun not hide his face in shame at this inequity? Why does the moon continue to wax and wane in the face of this injustice? How do the stars shine after such tragedy? Kali, I do not know if you can stop death with your lolling tongue; I do not know many things. But I do know that death is disproportionate in gains. If there is a way in to death, then there must be a way out. It is the pattern of the great universe. If only the strings were easier to manipulate.

Commentary:

Then, it happened. Stephanie left. I was crushed by the weight of the sadness, the tragedy of three children growing up without a mother and of a husband

with no wife, the grief of parents who not only watched, but helped to ease, their

only child into death. It was hard to accept that she had died. But I watched her

get put into the ground. She was still with me though, whispering in my ear,

urging me to continue writing:

Wait for Me Wait for me, I will come. Meet me at the door. You will greet me with a smile and a hug Your blue‐green eyes bright Your reddish hair shimmering in the light from behind you. 214

It will seem like decades to me, but only moments to you. Gather our friends and family. Ready the feast. Wait and I will come. We will embrace again, And life will begin anew.

Commentary:

And as calm as I felt when I wrote Wait for Me sometime in April 2006, I don’t feel it now. I kept searching for answers, beating myself senseless with regrets for not having done more, for surviving when she didn’t. Psychologists say people behave certain ways because there is a pay off; I’m not sure what my pay off is, all I know is that it still hurts. Maybe the hurt is my pay‐off. I don’t want to die, and in fact fight to live, so if I hurt for Stephanie, then I feel better—

because she’s with me in some small way. But I still can’t help but feel badly

about missing my last opportunity to see Stephanie alive the Saturday before she

died. I had planned on seeing her that day, but was unable to visit because of a

change in plans at home, leaving me unable to go. I called and spoke to

Stephanie’s mother‐in‐law, just to check in. I planned on visiting the next

morning, and got up early to go to the bakery to buy these special cookies that

Stephanie’s children enjoyed. When I returned home, I called Stephanie’s house

to see what time would be best for a visit. Her mother answered. And in

minutes, I learned that Stephanie was gone. I had visited with Stephanie just two

days before, on Thursday. That day, a nurse had come to take Stephanie’s blood

pressure. Just before we left, the nurse said that she couldn’t even take a reading,

because Stephanie’s pressure was so low. This is what happened to Judy days

before she passed away—and that memory was poking my brain on Saturday,

the day I was supposed to visit but didn’t, the day before Stephanie died. The

result is the essay, Special Relativity: 215

Special Relativity

Einstein had a theory, well, he had a lot of theories, but this particular

theory is of particular interest to me: the theory of special relativity. It focuses on

Spacetime; yes, the one‐word spelling is correct. Spacetime says that the whole

of space and time are in one “loaf” that may be “sliced” to show the now, but

that all time—past, present and future—exists within the same Spacetime “loaf,”

though beyond human perception.27 Why is this of such particular interest to

me? Outside of the obvious implications, my interest is because I lost a friend,

Stephanie. She died at age thirty‐seven of breast cancer; the kind that only eight

percent28 of the female population between the ages of thirty‐two and thirty‐ eight contract during, or just after, pregnancy.

Sad doesn’t even begin to cover it. Stephanie died just one month before her tenth wedding anniversary to her husband, Mark, and two months before her thirty‐eighth birthday. Three years earlier, Stephanie was blissfully unaware of what lay ahead of her; she hadn’t even heard of Spacetime or special relativity, and was more worried about what to name the baby she carried inside her. She was on vacation with her two children, then five and three, and her husband.

The young family was taking a much needed respite that February in 2003 before

the baby was born the following August. During the vacation Stephanie

contracted a strange bout of Folliculitis, a skin rash that is actually a form of

Staphylococcus Aureus, or Staph, for short. It happened after she took a dip in

the hot tub. Her doctor had warned against using a hot tub while pregnant, but

she was on vacation and was tired, feeling bloated and fat. It was just a fifteen‐

minute dip, but then again, nothing is ever the way it seems, not even our

27 See Brian Greene’s The Fabric of the Cosmos for more on the physics of space, time, and the universe at large. 28 See the American Cancer Society, www.acs.org 216

perception of reality, according to Einstein’s theory. It was during an

examination for the Folliculitis that Stephanie’s doctor discovered the breast

cancer.

You see, even when we think we’re seeing things immediately, it’s not

true. It takes time for the light of an image to be received by our eyes. So, what

we think is happening “now,” is actually already “past.” If Stephanie could have

glimpsed her future in the spaceime “loaf,” would she have done anything

differently? If for just one moment, not even a moment, a millisecond, she saw

that in January of 2006 after a three‐year battle, she would be given her final

prognosis, “You have two months, at most. I’m sorry.” Unfortunately,

Stephanie cannot answer this question, but I can—what would I have done

differently, if I could have seen her future?

The truth, the awful, unpredictable and often unbecoming truth, is that I

would do nothing differently…because I knew. I knew she was going to die, not

because I tasted a “slice” of future from the Spacetime “loaf” of proverbial bread,

no; it was because I received an email. It was short, and not particularly

interesting. In fact, it barely caught my attention at the time:

Hi, Rebecca. Just checking in. I’m on my last‐hope drug. Still looking for a gift for

Mark for Christmas. Someone anonymously sent us a $100 bill in the mail—was it you?

It was a blessing; we needed it. Hope you and your family are well. How are you

feeling? Have a good holiday! Stephanie

It wasn’t me, the hundred‐dollar bill. I wished it was, but it wasn’t. Too

busy writing, just like now, to think about much more than that part of the message—the meaningless part—that made me feel guilty. I barely noticed what 217

was artfully placed between the greeting and the guilt: the cry for friendship, the

request for support, the communication of need, and fear, and desire, and grief.

So, I knew, and still did nothing. In February 2006, after not hearing from

Stephanie since her December email, I phoned to chat with her, maybe see if she

was up to meeting for lunch. Her mother answered because Stephanie was busy;

she was dying. At that point Stephanie could still speak, though because her

brain and other organs were slowly shutting down, her speech was slurred and

she could not articulate her thoughts the way she wanted.

I visited the next day, and for many days thereafter, until her death in

mid‐March 2006. The first visit, Stephanie recognised me. She talked to me. She

told me that she was happy I came, and that, with all my writing, I found the

time to visit. She told me she felt like, sometimes, she was losing her mind because she knew she wasn’t saying what she was thinking. She was afraid, not

of dying, of going crazy. She was yellowed from continuing kidney failure.

There she laid, a shrunken form of who she was just two months before, the life

slowly and mercilessly slipping away from her too‐young body. In the

background her children could be heard playing in the family room and hallway,

chasing each other and making funny vroom‐vroom sounds; their footsteps were a

soft pounding on the tiled entryway floor. It was surreal to hear such life

happening at the same time as death. Stephanie was there all the while, laying in

her hospital bed in the room once set up for living, now set up for dying.

Only one day later, Stephanie was barely conscious. She couldn’t keep

her eyes open for long and merely made unintelligible sounds—Stephanie would

continue in this state for well over a month. Stephanie’s mother‐in‐law spoke

loudly to Mark in the kitchen, within ear‐shot of the living room where 218

Stephanie laid, “Do you think she’ll make the week? She looks bad; the kids can

sleep over this weekend….” Stephanie’s eyes fluttered; I knew she heard it, too.

Everyday I spent with Stephanie, everyday for the next month until her

death, was the same. People would come into the sick room to say goodbye, like

me, hugging and crying and telling Mark, as well as Linda and Bob, Stephanie’s

parents, how very sorry they were. Stephanie, laying one room away, was

listening, waiting, dying.

The only child of Bob and Linda, the only mother of Matthew, Katie and

Michael, the only wife of Mark, and my friend, died on March 19, 2006. I’m no physicist, but that moment is fixed in time, in my memory, forever. It lives as vividly as my false perception of “now” and with sharp clarity, as if the light from that moment was just reaching my eye. Her death, an event to some, an unspeakable grief to others, but completely unfair to all, passed uneventfully on a Sunday morning. I had promised her the Thursday before, whispered softly in

her ear while squeezing her warm hand, “Wait for me, I’ll be back on Saturday afternoon.”

I couldn’t make it that Saturday, but called. I spoke to her mother‐in‐law.

She said Stephanie was “hanging in there,” and I couldn’t tell if she was happy or not about that fact. And once again, I knew. I knew that Stephanie, whose blood pressure had dropped to practically nothing two days earlier, was going to die. And she did; Stephanie didn’t wait for me. The Spacetime “loaf” did not need to reveal a thing because I already knew, and though I wish I’d acted differently, been a better friend, a better listener, a better supporter, in the end, all I had time to do was watch her die from afar. 219

Special relativity, it’s an interesting concept. It is a human notion to want

to turn back time, to improve, to succeed, to win, to lose. Spacetime doesn’t

allow for human perception to see all the “slices” of past, present and future

moving freely, at least according to Einstein’s theory, but it doesn’t need to. If

we pay attention, we can see all we need to know, all we need to understand. If

we stop, once in a while, stop our constant running, the never‐ending marathon

on a gerbil’s wheel, we would be able to hold our friend’s hand while she lived,

and while she died. We would be able to send a one‐hundred dollar bill

anonymously in the mail to a family in need. We would write a short essay to be

published in a literary magazine for the friend who now watches with wings, an

angel…on earth, as it is in heaven, and every Spacetime in between.

Commentary:

I wrote Special Relativity for Another Chicago Magazine, a literary journal that

publishes poetry, fiction and creative nonfiction, because I was craving

acknowledgement for my feelings, right or wrong. I wanted people to know, to

connect, to become aware, to feel close—even if I never met a single person who

read the piece, they would know a part of Stephanie, and me.

*****

My poetry and essays didn’t stop there. Sue, who I became very close to after our interviews, is still fighting for her life in January 2007. The metastases on her liver began to grow again after a three‐month break from chemotherapy

treatments in August 2006. Sue, already suffering from neuropathy in her feet

and hands, a total numbness and lack of feeling in her right leg, lack of appetite,

nausea, dizziness—all from the previous chemotherapy she had endured on a 220 weekly basis from August 2005 to May 2006—was going to have to endure more.

I recognise Stephanie’s quandary in Sue’s situation, and, it is not an easy thing to see. Sue is starting this new course of chemotherapy in a very unhealthy place.

She is less than 80 pounds because the radiation she had in her abdomen in April

2005 shrivelled parts of her intestine. Because of that, she had to have an intestinal bypass, which was reversed in fall 2006, leaving Sue with a permanent colostomy bag and urostomy bag. And because of this, she cannot absorb nutrients from food being processed as well. She is very, very ill already. The chemotherapy she was taking severely weakened her immune system. She has suffered from perpetual, multiple infections and is yet unable to leave the hospital. Sue has been hospitalized now for four months. I wrote this poem for

Sue in hope, in fear, in desperation:

My Friend Sue She sits alone Day after day Wondering, waiting, wishing She is alone Day by day Her heart yearns for comfort Her ovaries, dead for eight years, were The portal for the cancer Though the organs are long gone The cancer is not She weeps Grieving for her life For the life of her adopted daughter For her husband’s future She is spent But asks to continue With no feeling in her feet, in her hands The numbness outside creeping in Her joints are sore 221

Seasoned by the chemical marinade That robbed her of her hair And her life as she once knew it The scans show more cancer On her liver and lungs Visions of Stephanie Fill all of our heads Taxol is no longer toxic…enough What will be? Will anything be Normal again?

Commentary:

I’ve become so accustomed to knowing Sue exists in this world; she is like a bright spot in my psyche. I’m not sure what will become of me if I lose her. I don’t even want to acknowledge that possibility. I didn’t want to acknowledge it with Stephanie either—or with Judy, or with my aunt, Ivy. I have lots of questions about this thick, sometimes sick, soup we are swimming in and asked those questions in this next poem:

Questions Why not? Why not live? Why not survive? Is it all based on the flip of a cosmic coin? Can’t someone grab their own coin and change fate, or God’s will, or whatever it is that guide’s death to snatch a living life? I only have questions, no answers…is that the answer after all?

Commentary:

Perhaps there are no answers. As I sit typing here, Teri is also suffering a severe recurrence. Her cancer may have metastasized to her brain. They found a lesion there. It caused her to have a seizure. It has also caused her to have trouble

“finding words,” as she says. This is her third diagnosis of ovarian cancer. She is waiting for the results of a recent scan to determine if she can take a break 222

from the continuing chemotherapy. That’s what life has become, a series of windows or pockets, breaks from injecting toxic poison into your veins, into your heart, and eventually, your soul.

On October 31, 2003, I sat in my writing room, not yet red, and wrote for the first time in two years since my 2001 recurrence. From 2001‐2003, I was so tired, the best I could do each day was to just get through the 24 hours alive. I hadn’t the energy to even write, a practice I’ve been faithful to since I learned to form letters on paper. The next essay, SHaKeSPeaRe, was first published in

January 2005 in Quiet Mountain Essays, an online feminist journal. I tried to express the surreal nature of being a cancer patient and what it meant to live with the disease. Even though it has been three yeas since I crafted the essay, the words still hook into my ribs and make me suck in breath, like I’ve been punched hard.

SHaKeSPeaRe

How long could she wait? The MRI machine hummed and knocked

ceaselessly in the next room. People were slumped in their neutral toned chairs,

just waiting. She kept looking at the receptionist, pleading with her eyes to

please call her name. The receptionist coldly filed her long, curved, bright red

nails. The receptionist didn’t know, didn’t understand. Only she knew the horror of hopelessness. People waiting in the neutral chairs knew about pulled ligaments, locked jaws and hip dysphasia. No one there recognised the humbling notion of mortality as prophesized by that buzzing, humming, knocking monster of a machine. 223

A nurse in a white coat enters. The nurse in the white coat checks her

clipboard, “Rebecca Housel.” Time to go. She leaves the neutral waiting room.

The room of waiting zombies. “Come on back and change into this gown,” says

the white‐coat.

“I’m not wearing any metal, no bra; no make‐up. I don’t wear the gown.

You will have to check me with a wand.”

“Our policy is very clear. You must change into the gown.”

“I’m being very clear, I don’t change. Use the wand.”

The white‐coat looks at her through slit eyes. The white‐coat does not

appreciate having her authority challenged. The white‐coat turns quickly and

steps into the room marked “Magnet.” The white‐coat returns just as quickly

and motions her in.

“We’ll be using the wand, so just stay still,” as if it were the white‐coat’s

suggestion.

The wand beeps as it sweeps over her head. “Do you have any hair pins

in your hair, miss?” asks the gentle radiologist, who knows what shadows mean

on film.

“No. It’s titanium mesh.”

“I see,” says the gentle radiologist, who understands what that means.

She’s lead into the small space with the monster machine. She knows what to do. She hops up on the table that slides into the magnet. The white‐coat silently straps and cages her head. She cannot move now, or the images won’t 224

come out. The white‐coat pushes a button, sliding the table into the magnet. The

magnet is only inches away on all sides, not a tight squeeze, but very close. Like

a lover. Only it’s the monster who tells what’s inside.

The loud knocking is not unsettling. It comforts in its repetitious patterns.

She pretends to be a mutant, as if from a comic book, being checked in a high‐ tech machine. She is a mutant. Her cells have mutated. Mutated into little, carnivorous monsters. She wants to cry, but doesn’t. She doesn’t want to move.

The images need to be clear.

The test is long. Dye must be injected halfway through. They can never find the vein. The “needles” never stick the butterfly in the right place. It takes

time. And she must be patient. Why is she always a patient?

Done. She’s freed from the monster that swallows her whole. The images sit

on computer screens in the room outside. The white‐coat and radiologist and

“needle” look at her with pity. No arguments now.

In an hour, she will be back in a neutral room of zombies, waiting for

answers. She feels dizzy and drained. If she had to be a mutant, why couldn’t

she have some powers, like in the comic books? She muses flight might be nice,

or maybe telekinesis. She imagines fantastic costumes that fit tightly to her skin,

and indicate her power. She would have long, long hair and an exaggerated

beauty. She would have some kind of cool name, too. Like Venus, or the

Chocolate Sitch.

Instead she gets names she understands from the Latin, like Astrocytoma,

the star tumour. Its points help it reach far into her brain, her only galaxy. When

it shines, it makes her body convulse and shake like a shivering leaf on a windy 225

fall day. She is just as vulnerable as the leaf. Just as easily shaken and crushed.

Why must the star shine so brightly? She is too young for the brightness, the

ever‐increasing light!

But youth does not matter to the hungry mutant cells. Nothing matters.

Not her beautiful boy, nor her loving husband. Not her religion. Not her career.

Not even her life, which if taken, will kill the parasitic mutants, too. But suicide is part of their mission‐‐similar to the horrible humans who strap bombs to their

bodies and walk into crowded cinemas and restaurants in the desert.

She quiets. Peace. Her name is called. She takes the long walk. Her

doctor greets her with a smile. Why does he always smile? Does he think she’s

here for pleasantries? By choice? Maybe he thinks his smile is a mask, hiding his

true nature. The smile doesn’t do its job. She knows.

“The scans are just fine,” he says. She knows they are not. She knows

there is a wisp of shadow, a ghostly remnant that will haunt her. It only sleeps,

for now.

“Let’s check again in another three months.” More smiles. Like a hungry

animal bearing its teeth.

She smiles back. He is not the only animal. She is becoming savage under

her skin. A warrior of vicious, insatiable hunger. She has scars from past battles.

She is marked.

She knows the war rages on inside. Like all heats, it sits still for a

moment. Sleeps. Even hungry mutant cells need rest. It just means they are

recharging their batteries. Her body betrays her. Like Cassandra. Making

things easy for the aggressors. 226

The poison makes them sleep. She wishes the poison killed, instead of

drugged. Some were ripped out mercilessly, but others remained. Hidden in

secret chambers. Shadowed by healthy matter. A covert operation. Yet she

knows. She understands and cannot be fooled by the current quiet. She’s

become an expert on her body. Few learn the expertise needed for this skill.

Not even the doctors can tell with all of their instruments of detection.

She begs her strong, silent God to aid the sleep of her enemies. To keep them

at peace, at rest, and undisturbed. She doesn’t mind the occupation, as long as

they sleep. “Keep your friends close, but your enemies closer,” the cliché

reminds her to remember the old truth. She can never forget.

Others play, careless, thoughtless, blissful. Her play is never care‐free. She cannot take simple breaths, or simple steps, without understanding. “Oh! That men could read the book of fate!” Shakespeare pleads, and so does she. But to know fate is to know death.

People think she is pessimistic because she acknowledges her fate, as people

acknowledge that “one day” they too, will die. Humans must die. We are made

for it. To consider that eventuality is normal. She is normal, like any other mutant warrior fighting the enemy within. What’s so strange about that?

*****

Commentary:

While Teri and Sue deal with recurrences, the physical repercussions of cancer,

Kathryn and Jacquie deal with a different kind of side‐effect. Jacquie’s husband

left her on August 1, 2006. She is alone now. For many years, she denied herself

happiness, telling herself that her son, Zach, was worth it. Unfortunately, it 227

doesn’t matter what she wants now. Her husband left her after Jacquie, heavily

in debt, took money out of her retirement account to pay it off. He didn’t care

about the emptiness between them. He didn’t care that Jacquie had been lonely

for years. He didn’t care enough to find out why she might be lonely, or why the

two hadn’t been intimate, or, why she felt the need to buy so many material

things to fill an emotional gap left gaping by his own apathy. The only time he

cared was when money was involved. And it wasn’t even his money. It was

hers. It was like he was planning on divorcing her, waiting for her retirement

plan to have a certain amount so he could claim half of it. But when she told him

she had to clean out the majority of her account for debt, he was done.

Kathryn met someone. Her gentle husband was too stable. She had confided

that the idea of her living long enough to retire made her feel uneasy, and that she was seeing a therapist to work through the problem. But the problem got to

her first. In her travels, she met another man. She began to question herself, her

happiness, her life. She and her husband are now separated. She moved out of

the house she and husband, Peter, built specifically for her limitations. She now

lives in an apartment, alone.

Marina has also had to deal with changes. Unable to maintain her position as partner in the salon she co‐owned, she will now be renting a chair to continue servicing her manicure clients. Her son left their home. He didn’t bother telling

his family where he was going. He just left. It took weeks before Marina learned

the whereabouts of her son. During that time, she was under a great deal of

stress and pressure. Though her husband found a new position, it is not one he

likes, and not one that pays. One of his pay‐checks bounced. The check

encompassed six weeks of compensation already owed. Marina’s September 228

2006 scan was clear. She will have scans at three‐month intervals for the next

year, and from there, every‐six months.

Joan is doing well. Her health is stable. She is enjoying vacations with family, and of course, spending time with her new grandson, Rocco.

Alanna is having difficulties. It is still not determined if she is in fact suffering from Lupus, but she does have all the symptoms and so doctors are treating her

as a Lupus patient. Tim still enjoys good health. The two expect a new child in

June 2007.

Maxene has suffered from a number of respiratory infections, some of which she

has been hospitalized for. She and husband, David, are still living in the Boston

area. Son, Doryn, is doing well in school. The family plans on traveling to back

Australia for an extended vacation in summer 2007. Maxene still works for the

private prep school in Concord.

As for me, I have spent much of the last three years writing. I’ve also enjoyed

travel with my family all over the States and in Australia, a place that stole my heart. Every day is a blessing. I know it and strive to not take life for granted.

My last scan in September 2006 was clear. My next scan for the brain cancer is

June 2007. I had skin surgery for Melanoma in August and have another scheduled in March 2007. Gary is healthy and so is Bob. What more can I ask for?

***** 229

Ode to the Young Frisbees, skateboards, rollerblades Glide with easy laughter and friendship In the sunshine Sealed tightly by the sticky, melting Free Ben & Jerry’s ice cream cones And the cloudless blue sky Overhead. Boys looking at girls, girls looking at boys Both are once and future kings, lovers and friends. A girl in a flouncy skirt gives Two “Fuck You” fingers To boys who point and laugh As she wheels gracefully Across the bricks On her skateboard. The feeling is light And so is the air Both gentle and warm Creating the sense Of what it means To be care‐free In the glow of it All.

230

This next piece is referred to in this book and is included for that purpose. The piece was published in December 2003 in Rochester Review, then, reprinted

(though in an edited version) in Redbook magazine in August 2004.

For Always29

Over a decade ago, I was diagnosed with a brain tumour. At the time, I was

20 and a new mother with an infant son, Gary. The tumour was malignant, and

after five hours of exploratory brain surgery, the tumour was determined

inoperable. I became the guinea pig for an experimental radiation, better known

now as radio‐surgery. The highly focused radiation stopped the tumour growth.

The experiment worked. Life went on. Sort of.

Life did go on—but in a warped way. I became busy trying to do every possible thing for my son that a mother can do, to the exclusion of my husband,

Bob. A wild desperation drove me. Because the tumour was malignant, it would

be back. Even with the radiation, the doctors thought I had five years—10, tops.

So I figured I had only one abbreviated shot at raising my son. I became uber‐

mom. The PTA, volunteering at all the school functions, room parent every year of elementary school, coach of my son’s soccer, basketball, and baseball teams— that doesn’t even describe the half of it. I bought clothing for my son three years

in advance. All the basics, like pants and shirts, even anticipating winter coats.

Gary has finally outgrown the coats I purchased more than five years ago.

But his closet is packed with T‐shirts American Eagle, Aeropostale, and

Abercrombie and Fitch that still fit. Several years’ worth of birthday and

Christmas gifts were stockpiled in my basement. Classic books like The Three

29 Rebecca Housel, December 2003; First published in the Rochester Review, winter ’03-‘04

231

Musketeers and Edgar Allen Poe’s Collected Stories and Poems, and toys like Legos,

Robotix, model rockets, and cars—timeless items that any kid would enjoy at any

age.

I kept the collection of future gifts locked in big, plastic containers, along

with wrapping paper, ribbons and cards tucked in a storage area of our

basement. And we were not rich. In fact, we still have a huge chunk of debt

because of my stockpiling—even worse than my Rochester school loans.

My husband, ever patient and kind, stayed out of my way. He knew I was on a mission. I even told him outright that our son was my priority, not him. We

didn’t have a conversation. I just told him flat out one day, as nonchalant as any

human can get, “Gary is my priority, you know. He’ll always be first to me.”

Harsh.

I never really considered how Bob must have felt. Gary was my only focus.

Lucky for me, my husband did not turn away from me the way I had him. He stuck by me, despite my behavior. But then, the catch—because there always is a

catch: Malignant cancer comes back. That’s what malignant means.

Ten years later, at age 30, I faced a similar diagnosis. Surgery to remove a

new growth was required. Thirty was not going to be a good year.

My fears had finally come true. My 10 years were up. Every movie ever made about women who die from cancer came pushing to the front of my mind.

I was drawn to that type of movie, like a moth to a flame. Like Sleepless in Seattle,

where the husband and little boy are alone after the wife dies of cancer and then

the husband, Tom Hanks, meets Meg Ryan and falls in love and the three live

happily ever after. To imagine a life without yourself in the equation while still 232

very much alive is heart wrenching. It’s the kind of thing that makes a person go

crazy.

There was an excellent chance of paralysis after the surgery because the new

growth was near the area of my brain that controls movement in my body. Initial

recovery after

the surgery would require at least one month in a rehabilitation hospital.

After that, nine long months of chemotherapy.

Death was never an option. I’d worked too hard to let some pretty, blond

Meg Ryan–type take over, but über‐mom was no more. It’s difficult to facilitate

insanity when paralysed.

I had lots of time to think, and think, and think. As I was thinking, my husband was doing . . . everything. He bathed me, dressed me, fed me, kept me

comfortable, tirelessly took me to appointments almost daily. All the while, he

was the most wonderful father to our son, taking him to and from school,

making lunches, coaching soccer, arranging sleepovers, helping with homework.

I could not help but notice Bob, my loyal and loving husband. There wasn’t exactly one epiphany moment where I realised how horrible I’d been to him—it was more like a slow revelation over time. During the acute moments of the illness, I was too sick to care about anything or anyone. Just waking up and moving was an accomplishment.

The revelation started to take shape as I began feeling better. Toward the end

of my chemotherapy treatments, when my stomach could digest food again, my

husband would bring me breakfast in bed in the mornings, always with a smile.

He’d make me laugh, keeping my spirits high when frustrations ran higher. He 233

shopped for groceries, made dinners, and ran our entire house on his own, often

working late into the night to pay the bills. He remained positive, never

wavering in his faith that I would heal.

How could any human be so generous of spirit to someone who all but ignored him? Bob blew me away with his tenderness, love, and caring. Humility

is something earned, and under the weight of the surgeries, paralysis, and

chemotherapy, my humility was earned at last. Bob was no mere mortal, he was

angelic, divine, a titan among men, and women, too.

A shift occurred as I healed. And I did heal. It took almost two years, but I now walk with the help of a brace and a four‐wheeled walker called a Stingray.

But it was more than my body that healed. My soul was cured of the wild desperation and the rack of unspeakable terror that I would die and not raise my son. My heart, much like Dr. Suess’s Grinch, grew. I had room for my husband and for my son.

Then a new desperation occurred. I became desperate to live—for my husband. The man who gave me a life, even when I did nothing to deserve it, deserved a life of his own. He chose me as his life partner. All the many instances

of generosity during my illness and over the span of our marriage finally broke through. I would be willing to die for Gary, of that there is no question, but I

want to live for Bob. For some reason beyond my limited understanding, Bob

loves and wants me.

Longevity runs in his family—time to honor the vow I made on our wedding

day, “to love, honor and cherish my husband . . . for always.” 234

Everyday we spend together is a gift. We are more in love now than ever before. We eat together, laugh together, dance together. We face the future together. I always thought being a mother made me a better person. It turns out that being a wife has helped me become a whole person.

You can’t get much better than that.

235

finis 1

T h e N a r r a t I v e o f

P a t h o G Y N O g r a p h y

Rebecca A. Housel

Ph.D. in Creative Writing 2007

TABLE OF CONTENTS

INTRODUCTION ...... 4

1. GENRE ...... 5

1.1 Genre: Origins...... 7

1.2 Genre: Conclusion ...... 12

2. PATHOGRAPHY: MAJOR INFLUENCES ...... 13

2.1 Anne Hunsaker Hawkins ...... 14

2.2 Elisabeth Kübler-Ross...... 29

2.3 Anne Hunsaker Hawkins on Cousins and Couser...... 35

2.4 Arthur Kleinman ...... 44

2.5 Arthur Frank and The Wounded Storyteller...... 50

2.6 Linda C. Garro and Cheryl Mattingly...... 55

3. POSTMODERN AND FEMINIST INFLUENCES ...... 59

3.1 Judith Butler...... 59

3.2 Linda Hutcheon...... 64

3.3 Margery Wolf...... 65

3.4 Frances E. Mascia-Lees and Nancy Johnson Black...... 67

3.5 Susan Wendell ...... 70

3.6 Judy Long ...... 74

4. INFLUENTIAL JOURNAL ARTICLES AND ESSAYS ...... 85

4.1 Journal of Contemporary Ethnography...... 85

4.2 Journal of the American Medical Association ...... 87

4.3 International Journal of Health Sociology ...... 89 3

4.4 Medical Journal of Australia ...... 90

5. CONCLUSION...... 91

WORKS CITED ...... 92

Introduction

Three years ago, I began a journey. I had presented an article on my cancer experience at a fall New York College English Association (NYCEA) conference in 2003. The President of NYCEA, Angela Belli, came up to me after my presentation and said while shaking my hand, “Your pathography is compelling.” This was the beginning.

Less than one month later, I decided to write a creative nonfiction collection on women with cancer. I did not fully understand where this new road was going to take me but I knew it was a road I needed to travel.

The idea was to interview at least nine women about their cancer experiences and write about those experiences through the lens of my own as a cancer survivor. I wanted to show that women with cancer were strong, were survivors. I wanted to show that women with cancer lived.

What started with the tenuous title, Warrior Women, shifted to a postmodern-influenced volume entitled, My Truth: Women Speak Cancer. As I researched, interviewed and wrote, I began to objectively recognise that my perceptions about the cancer experience, as well as my perceptions of my role as a researcher and writer for such a project, were skewed.

The women in the book are strong survivors, but not all lived. Through this work, I have learned to accept that death is not a weakness, nor is the disability, nor is the entire disruption that encompasses the cancer experience. I also learned that my role as a researcher and writer was not to shape the narratives of the survivor’s with my vision but to present the subject’s story in a way that conveyed the truth of her experience.

As I continued my research on illness narrative, also termed, pathography, I began to see empty critical spaces, specifically when it came to women’s pathography, or what I have named, pathogynography.

In the following dissertation, I draw on theoretical material from a number of disciplines that influenced the creative nonfiction collection, My Truth: Women Speak Cancer, including sociology, anthropology, feminism, postmodernism, narratology, and the emerging academic theory on creative nonfiction—the larger genre of illness narrative, or pathography, and, pathogynography.

1. Genre

“Acting like a sponge, illness soaks up personal and social significance from the world of the sick person.” Arthur Kleinman, The Illness Narratives: Suffering, Healing and the Human Condition (1988:31)

Creative nonfiction, also called the fourth genre,1 is emerging as one of the most popular written forms of the twenty-first century. The “Godfather” of creative nonfiction,

Lee Gutkind, describes it this way: “Creative nonfiction demands spontaneity and an imaginative approach, while remaining true to the validity and integrity of the information it contains.” (Gutkind 1997:5) Such is the case for each chapter of My Truth:

Women Speak Cancer.

With each person interviewed, I often needed to be spontaneous and creative while still being true to that particular individual’s story, even if it did not fit in with my own ideas for how to shape the research project. A good example of this was with Teri, a two-time survivor of ovarian cancer. During the course of our interview, I realised she was not being honest with me about certain aspects of her experience.

Housel: You've told me about your recurrence, but not about your original diagnosis. When did that happen? Teri: In 1989. The doctor performed surgery, and that was that. Housel: How was Bill (Teri's husband) during that diagnosis? Teri: Oh. Bill wasn't my husband at that time. Housel: You met Bill after the diagnosis? Were you married before then? Teri: Yes, but, I'd prefer if this was not included in the book.

1 Creative nonfiction is called the fourth genre of written prose after the preceding three genres: poetry, fiction, and nonfiction. 6

Housel: Why not?

Teri: Because I was married to the father of my two children when first diagnosed it was not a happy marriage a happy marriage, and that is how I met Bill.

Housel: You met Bill after divorcing your first husband then?

Teri: No.

*****

Judith Ortiz Cofer writes, “the process of creation begins with the identification of

the Subject”, and this is what I needed to do for Teri (Forché and Gerard 2001:12). I had

to give up my own preconceived notions of who women with cancer really were. I

realised that I was not interviewing Teri, or anyone else, so much as seeking those

responses I wanted. I knew then that I was the one not being honest. Teri deserved to

have her story written with the validity and integrity that it deserved. After all, this was

Teri’s truth.

Truth is a deceptive concept. Laura Wexler acknowledges this regarding

postmodernism and positionality in creative nonfiction:

it’s important to acknowledge that different people almost always have different interpretations of the same event … Postmodernism shows us the impossibility of the existence of one true version of anything that matters” (Forchè and Gerard 2001:26-27).

This is how I derived the title, My Truth: Women Speak Cancer. I was writing my own truth, funneling the survivors’ stories through my own, which is based on my own positionality, not theirs. I try to take their positionality into account as I write my version of their truth, but it does not negate the fact that my own positionality as author will always override theirs as interviewees. 7

At first, I was struck by this realisation, and almost gave up the research, feeling

as though I was not doing justice to the survivors. And then I learned that it was not a

problem of integrity, but of craft:

implementing the principles of postmodernism in creative nonfiction means taking standard journalistic operating procedures further. It means creating literary structures and techniques that are the formal embodiment of these principles … (Forchè and Gerard 2001:26-27)

With the idea that my position was as valid as the subject’s, I named my position within

the text of another embedded autopathogynography in an effort take “journalistic operating procedures further” and create “new literary techniques.”

1.1 Genre: Origins

“Pathographies are compelling because they describe dramatic human experience of real crisis: they appeal to us because they give shape to our deepest hopes and fears about such crises, and in so doing, they often draw upon profound archetypal dimensions of human experience.” Anne Hunsaker Hawkins, Reconstructing Illness: Studies in Pathography (1999:31)

I derived the term embedded autopathogynography from three theoretical

influences: feminism, pathography, and narratology. Mieke Bal, a theorist of narratology

who explores the theoretical principles behind narrative, discusses the idea of embedded

texts:

A first difference resides in the nature of the embedded text. …When these criteria for narrativity have been met, the embedded text may also be considered as a narrative text. This is most obvious in so-called frame narratives: narrative texts in which at the second or third level a complete story is told. (Bal 1997: 52).

The collection of illness narratives, or pathogynographies, was being framed by

my own experiences, which was the embedded text that Bal describes. Each chapter

holds threads from my own story as I relate to each woman and her experience, coming

to a conclusion in the final and twelfth chapter where I relay my experiences in detail, weaving all the previous threads into one complete tapestry.

I next took the word pathography, first used by Freud, then Oliver Sacks, and later modified by Thomas Couser with his terminology “autopathography” and

“biopathography”. I made my own modifications with pathogynography, then autopathogynography, influenced by Donna Stanton’s term “autogynography,” used to describe women’s autobiography. Long describes autogynography as a way to change the

“form and substance of autobiography” to produce “new methodological precedents”

(Hawkins 1999:57). This is what I was doing with the creation of embedded autopathogynography, directing a new methodological precedent in pathogynography.

Brett Lott describes creative nonfiction as “our responsibility as human beings to

answer for and to our lives,” going on to say that this responsibility “must be woven through our recognition that the only truth I can hope to approach will finally and always

only be my truth” (Root and Steinburg 2005:365). My truth is what I hope to answer for

and to, while also giving glimpses of 11 other remarkable women in My Truth: Women

Speak Cancer. Lott says that creative nonfiction is a responsibility of recognition. And

this is quite true. As I continued my journey, I began to recognise what I called

entrenched narrative silence, the area of a narrative where there are no words, but a story

is still being told. This was the case with Maxene, a two-time survivor of non-Hodgkin’s 9

Lymphoma, as she discusses her actions after her first diagnosis as opposed to her actions after the diagnosis of the recurrence several years later:

Maxene: The first time, once I was well, I threw myself into life, painting, traveling, moving back to Australia, and finally, finding love. This second time, I feel like I am more restricted. I don’t do many of the things I once did since…well, since I married.

Maxene’s pause in the sentence, “I don’t do many of the things I once did since…well, since I married” indicates the entrenched narrative silence where there is significant meaning and context given to the preceding and following words from the fixed silence. Derrida’s founding principle of deconstruction was based on there being

“nothing outside of the text” (Derrida 1976:158). Entrenched narrative silence is fixed within the text, an unshakable, deeply- rooted pause that also has deliberate meaning.

Another example of entrenched narrative silence is from Joan, a survivor of

Melanoma, who talks about how she put all her efforts into caring for her children after her diagnosis, thereby ignoring her relationship with her husband:

A tiny little spot on my behind caused me to go into a three-week funk; once we got rid of it all, I decided I was going to do everything in my power to help my kids…(Joan looks down before she begins talking again but starts first with a grin followed by a quick laugh), and it takes all of my time and energy, because I have four of them!

For Joan, the entrenched narrative silence in her speech indicates her turn from her own personal life, including her marriage, to focus primarily on her children. During our interview I asked Joan about this implied abandonment and she admitted to feeling that her husband is secondary now, and that her children’s needs are all that matter to her, even if one of those needs is a request from her teenage son to drive to the nearest

Wendy’s restaurant for a midnight snack … on a school night. 10

As I continued to interview more women with illness, I began to feel as though

the creative nonfiction was merging with ethnography. The second part of the volume’s

title, Women Speak Cancer, has anthropological and sociological roots. It was as though

cancer had its own language, community and culture, with particular elements unique to

women’s experiences, such as motherhood and the effect of the disease on domestic

duties. A woman does not just talk about her illness, she speaks cancer, a language unto

itself, formed within a community cluster that has adopted its own gods, worship, rituals,

and meanings.

Arthur Kleinman refers to illness narrative as a “mini-ethnography” (1988: 230).

Medical doctors document patient’s lives, like an anthropologist observing people in a

new culture, in the hopes of recognising “one community among many human

communities” (Mascia-Lees et al. 1989; 8). Adapting Stanton’s idea of inserting the root

“gyn” in words like autobiography, indicating specificity to women, I derived the term

ethnogynography to describe the process of pathogynography in a more honest way. It is

not just about illness experience, it is about positionality within the cancer community.

However, the problem then becomes that as narrator, pathogynographer, and

ethnogynographer, how do I separate myself, as I am also part of that same community?

The simple answer is that I cannot. So then the term must reflect this shared

community and evolve to what I call meta-ethnogynography, indicating that the process is beyond that of a typical ethnography where the ethnographer is outside of the community she observes. This approach requires reflexivity in its praxis, a theoretical mode of thought associated with feminism, and used more and more in anthropology, psychology, and sociology (Wolf 1992:132). 11

Entrenched narrative silence came into play during the course of interviews, as well as the indicator that cancer can have its own language, derived from the culture of the disease. Kathryn, a two-time survivor of Osteosarcoma, uses cancer language in this section of her interview:

I couldn’t believe I was interrupted again. Can you imagine going through high school with one leg and thin-to-no hair? Everyone thought I was an alien, even me.

Kathryn uses the term “interrupted” to describe a cancer recurrence that required more surgery, more chemotherapy and more radiation, leaving Kathryn close to death and having to deal with knee-replacement when she had just lost her right leg as part of the course of treatment for her original diagnosis, just two years earlier. The use of mundane terminology to describe horrific events is part of the language of cancer. Codes are developed to help in continuing communication with the previous community the patient was in before the cancer diagnosis. The patient is often straddling both her previous community of work, home and family, and, her new cancer community of doctors, hospitals and nurses, leading to code-switching and necessary contextualization, like the

“texts-in-talk” identified by genre analysts within linguistics (Eggins and Slade 1997:33).

1.2 Genre: Conclusion

“…one of the main functions of the doctor is to engage to the fullest the patient’s own ability to mobilize the forces of mind and body in turning back the disease.” Norman Cousins, Anatomy of an Illness: As Perceived by the Patient (1979: 40)

Through the use of postmodernism, feminism, anthropology, sociology, pathography, ethnography, and creative nonfiction, the influences of genre on, My Truth:

Women Speak Cancer, are made clear. The original phraseology I create to describe the phenomena of both poiesis and praxis of the research and writing, including pathogynography, pathogynographer, autopathogynography, embedded autopathogynography, entrenched narrative silence, ethnogynography, ethnogynographer, and meta-ethnogynography, are explored further in the following sections. I will first begin with the major influences in pathography in section two.

2. Pathography: Major Influences

“Serious illness is a loss of the ‘destination and map’ that had previously guided the ill person’s life: ill people have to learn to ‘think differently.’” Arthur W. Frank, The Wounded Storyteller: Body, Illness and Ethics (1995:1)

The writing of illness narrative has a long history. Sophocles wrote an illness

narrative in the form of a play, Philoctetes, describing the pain, suffering, and isolation of

illness, and also illustrating the necessary compassion from others (in the case of

Philoctetes, Neoptolemus shows empathy toward the ill warrior) to make the healing

process complete for the patient, or ill individual. In the twenty-first century, hundreds of

years later, we are not just writing about illness, although illness narrative is one of the

top sellers of creative nonfiction, we are also studying it. Aristotle developed the idea that

the creative endeavors of humanity were threefold through theoria, poiesis, and praxis.

The first concept, theoria, or theory, was to result in finding truth. This truth would then

begin a process of production, or poiesis, leading to praxis, or action. What we look at in this second section is part of the poietical, or the process of production, for the collection

My Truth: Women Speak Cancer.

In the following sections, I will discuss the major influences in illness narrative

today, including Ann Hunsaker Hawkins, Arthur Kleinman, Arthur W. Frank, Norman

Cousins, Thomas Couser, as well as Cheryl Mattingly and Linda Garro. I consider how

each directly affected My Truth: Women Speak Cancer. We begin with Ann Hunsaker

Hawkins, who developed a comprehensive collection of illness narrative history, form

and function.

2.1 Anne Hunsaker Hawkins

“In some sense, pathography is our modern adventure story.” Ann Hunsaker Hawkins, Reconstructing Illness: Studies in Pathography (1999:1)

Unlike the case history, or the conventional biography, with their supposedly disinterested perspective, biographical pathographies are almost always written by someone with a close relationship to the ill person who is the book’s subject, and thus they override the conventional boundaries of self and other or biographer and subject” (Hawkins 1999:3).

Hawkins goes on to argue that when a pathography is written about an individual who dies, writing the pathography itself becomes part of the process of grieving through the pathographer’s thoughts and feelings. This is what I encountered as I began to write each subject’s chapter after an interview.

Though I am not related to most of the subjects, I am related through our common cancer experience—perhaps not common in the details, but common through the shared experiences of treatment, such as surgery, radiation and chemotherapy, as well as the isolation that follows such a diagnosis, and the infinite shadow that must remain in your mind ever after: death. Even Hawkins’ claim that a pathographer begins a process of grief is true. There are twelve women in My Truth: Women Speak Cancer. Three have died, another two are acutely ill from recent recurrences; two others are now divorced, and an additional two have been freshly diagnosed with serious post-cancer health issues: osteoporosis and Lupus. That leaves three, but Maxene has suffered multiple bouts of pneumonia, constant severe colds and broken bones in the last three years as a result of the treatments she received for her non-Hodgkins Lymphoma. Two of us, out of 12, have not had any major difficulties. 15

As I wrote My Truth, I was grieving for the losses, the changes, the disruptions, and the destruction that each survivor faced and communicated to me. Not all lived through it, and that also added another complex layer to the grief I felt for each and every woman in the book, including myself. Writing my own experience was perhaps the hardest of all the chapters. Facing my fears, acknowledging my cowardice, remembering

just how close to death I really was—all of it made me grieve, reliving the difficult

details of that time. It made sense that from all this grief, there should be something

learned. And there was, for me personally, but that was not enough. I wanted to use the subjects’ experiences as a way to convey knowledge about the disease, about how the disease affects a patient, her family and friends, about what it meant to be a woman with

cancer in the twenty-first century trying to juggle home, family, work, and personal

relationships. I also found that as I wrote, certain philosophies recurred in the text. I speak of Vedanta, the ancient Indian philosophy fed by the Vedic Upanishads, of

Buddhism, and of histories of the people and places where the women came from, and of

the statistics that burden the cancer patient’s existence, and finally, of words from

medical professionals in the field. I am a teacher by profession. I have been teaching

since 1995. Though it was not necessarily intended, my text became one of learning.

Hawkins suggests that “If we use authorial intent as an organizing principle,

pathographies tend to fall into three groups: testimonial pathographies, angry

pathographies2, and pathographies advocating alternative modes of treatment” (Hawkins

1999:4). Hawkins continues by discussing how testimonials typically have a positive

attitude toward medicine with the simple intent of telling the story of the illness through

2 Angry pathography is illness narrative written in an almost bitter tone towards not only the disease but sometimes the doctors, other hospital staff, friends, and family of the patient. 16

the pathographer’s thoughts and feelings, blending the personal with the practical.

Hawkins then makes a claim that such narratives have been written as models for those with the same issues, and to some degree, this is true: “this assumption of the

“generalizability” of illness is a part of our modern nomothetic mythology about disease, which assumes a uniformity of experience within a diagnostic category” (Hawkins 1999:

5).

While Hawkins is correct about the nomothetic nature of illness mythology, I do

not agree that such pathographies make generalised assumptions. In My Truth: Women

Speak Cancer, there are three individuals with ovarian cancer (Sue, Ivy and Teri); two

individuals with breast cancer (Judy and Stephanie), and two individuals with brain

tumors (myself and Marina). I also share a common diagnosis of Melanoma with Joan.

Though we all do share common overall experiences, like having surgery, enduring

chemotherapy and radiation, each of our experiences is quite different. If I were to plug

my collection into any of Hawkins’ categories, it would have to be testimonial, and yet, it

does not quite fit here. Angry pathography does not work either. And though I do explore

the mind-body connection in several chapters, I do not advocate alternative modes of

treatment. This leaves space for further exploration. Where does My Truth: Women Speak

Cancer fit?

Theoria, or theory, is to discover truth. While Hawkins is quite right that the

pathography of the last fifty-six years does tend to fall into one of her three outlined

testimonies, mine does not. In my collection, I combine biography of the subjects with

parts of my own autobiography, telling the subject’s story, and also using their stories to

relate my own, in a reflexive effort toward intersubjectivity. It is a new form of life 17 writing, beyond memoir, beyond biography, and beyond autobiography. It is meta- ethnogynography, or the meta-ethnogynographic pathogynography, where I speak from within the community I am also observing, using a reflective and reflexive approach to tell the pathogynography of each subject.

Hawkins also finds that a unique feature of later twentieth century pathography is being “isolated from an individual’s life” (1999:11). This is opposed to earlier accounts where life and death were thought of as an “inseparable part of living” (1999:11). Such is the case with my collection. I even comment in my own chapter on how human beings in western cultures feel we have a right to 100 years of life, and that is just not true.

Positionality, again. All of our perceptions are influenced by social, political and economic factors. If I were to write illness narratives of women from non-western cultures, like women in parts of Africa, their notions of disease, disability, death, and dying would be very different from the women interviewed for this Doctoral research project, all of whom live in either America or Australia. We will study the idea of positionality more closely in a following section on the postmodern however, positionality does influence Hawkins as well as she moves on to explore autobiographical theory.

Hawkins uses Pascal’s theories on autobiography to show how an autobiographical narrative is the author’s interpretation of the truth, not necessarily how the events actually happened. This is not because the author is being deliberately deceptive, but because certain parts of an illness narrative are not something relative to an audience. For example, in my own chapter of My Truth: Women Speak Cancer I did not expound on certain physical difficulties that occurred after my surgeries. The same may 18

be said of Sue or Stephanie. There is no point in revealing such humiliating details.

Living through such circumstances is enough. And more importantly, such detail does not

so much convey the story, but stop the story, perhaps even preventing a reader from

continuing, which is far from the point. Hawkins adds: “Writing about an experience—

any experience—inevitably changes it” (1999:15). There are still facts, however.

Truth is said to be defined by one’s perspective, which is naturally influenced by positionality. But what cannot be influenced by positionality are the scars. I might choose to retell how I remember my surgery, lying under a blue sheet, realising in the tenth hour that my left side was completely paralyzed while the braid of my long hair dug into my back, and there was nothing I could do about it, and yet I have the scars to prove that it did happen. I lay on an MRI operating table for 17 hours. It is a fact documented by my doctor, the technicians, the nurses, the hospital, and the scar under my hair as well as two more visible round scars on my upper forehead, one right, one left, signs of where the screws for the stereotactic device were affixed to my skull, so I could be literally screwed to the surgical table.

The way I choose to tell an audience about my experience, the diction, the literary

structure and techniques, those are what constitute the felt experience of the subject.

Pascal is careful to say that autobiography gives structure to the past, meaning beyond

just a simple retelling (Hawkins 1999:15). Mark, the husband of one of my subjects,

Judy, wrote in an email:

Writing all this down, remembering what happened in an organised way, has really helped me to understand all of it. I will be able to talk to my daughters about their mother in a way that is clearer, less emotional, so will have more meaning. I will never get over Judy’s death, but life has to continue. It’s been hard for me to embrace this, but now, I think it might get a bit easier.

Mark wrote the above email to me after sending answers to my interview questions regarding Judy’s experience. At this point, Judy had been dead for two years. It was a difficult situation. I had started to interview Judy after her recurrence of breast cancer, and this time, the cancer won. We were unable to complete our interviews, so Mark agreed to do so several years after Judy’s death. It was important to him because he wanted Judy’s story to be told; he wanted the truth of who Judy was, and their experiences together, to be acknowledged and recorded. Hawkins quotes theorist Philippe

Lejeune, “[the] aim is not simple verisimilitude, but resemblance to the truth. Not ‘the effect of the real,’ but the image of the real.” (1999:16) Pike calls autobiographical forces

“extrospective” and Stone regards the autobiography as a “social document” (as quoted in

Hawkins 1999:17). Hawkins has the last word, however, on the self in pathographical writing:

In narratives describing illness and death, the reader is repeatedly confronted with the pragmatic reality and experiential unity of the autobiographical self. Pathography challenges the skepticism of critics and theorists about the self, making the skepticism seem artificial, mandarin, and contrived” (17).

Hawkins declares that because the self in pathography is the “self-in-crisis … alternately resisting and inviting the eventual disintegration of the self that is death”, any theoretical criticism regarding the authenticity, or the existence, of the self, is negated.

Positionality enters yet again through theorists like Pierre Machery who sees the text as a social product, making the role of author that of a messenger who assists in the basic method of cultural delivery (Hawkins 1999:17).

Autobiography is a re-creation of the past. I may change my story to make an intolerable, torturous situation easier to understand, therefore re-creating the past. 20

However, the events still took place. And that is where myth in pathography comes into play.

“Pathographies interpret experience, and they do so in a way that discloses certain

important mythic attitudes about illness and treatment” (Hawkins 1999:18). The reason

for the inclusion of mythic attitudes in illness narrative is that what was identified by

Joseph Campbell as the hero’s cycle is actually about the human cycle. Campbell states

that all humans are heroes when born (Campbell 1988:154). Birth is a trial which, if

survived, takes an individual to the next level of consciousness. Illness is no different. It

is a rebirth of sorts. After completing my final chemotherapy treatment, knowing the

cancer was gone, I felt invincible, as though I had not just cheated death, but beat death.

Such power is usually only described in mythology or comic books (another form of cultural myth). Superheroes or gods beat death, not mere mortals. But as a cancer patient, as a survivor, you have beaten death—perhaps more than once.

Housel: Do you feel that you are a warrior or a hero?

Kathryn: Hell yeah! I can’t believe what I lived through; I mean, it’s really unbelievable. I was ten when I first got cancer. I lost my leg to it. Then, I was twelve when it came back. And yet, I’m still here. Incredible, isn’t it? I’m a thirty-year survivor. You don’t hear about many of those….

Kathryn was not alone in her sentiment that she is heroic for having beaten cancer, and

death, twice. Teri also expressed similar feelings, as did Sue, Marina, Stephanie, and

Alanna. Surviving a life-threatening illness like cancer is worthy of mythic praise, but the

criticism leveled against using Joseph Campbell’s defined hero’s cycle in

pathogynography is that it is based on male-oriented myth. My contention here is that

males were the predominant subjects of the mythology because they were the 21

predominant writers of the myth, not because the hero’s cycle itself cannot be applied to

women. Certainly Campbell’s definitions lack female elements, like motherhood, but the trials themselves were derived from the basic human life cycle, one of which is ritual

death and dismemberment3. That is a perfect description for surviving a cancer experience.

While I chose not to utilize Campbell or myth in general to characterize most of

my subjects, I did choose to use Campbell when first writing about Sue, and then chose to

remove Campbell in a later revision. I not only removed Campbell, but had to also begin

Sue’s story anew, taking nothing from the first chapter written in 2004.

The reason why I first chose to use Campbell in Sue’s chapter relates to Hawkins’

earlier comments about the pathographer. Sue evolved from subject to friend, and as she

became ill again after our initial interview in 2004, I was grieving for her. She adopted a

daughter three months before her recurrence of ovarian cancer was diagnosed in March

2005. In order to make sense of Sue’s story for my own needs, I turned to Campbell, or,

to the mythic. I show Sue going through trials, using talismans, crossing thresholds with

threshold guardians, and ultimately, becoming master of two worlds. When I first went to

revise Campbell out of Sue’s chapter, I could not. Because Sue is still struggling through

her recurrence, I need to believe that she will, in fact, become master of two worlds. I could not change how I felt about my once subject, now friend, and in order to maintain the all important self in the text, changing the mythic in Sue’s chapter seemed impossible.

3 All humans go through a ritual death upon birth, traveling down the birth canal, leaving the safety of the womb and coming out into the wider world (any place beyond the isolation of the womb) where we must go from interdependence as part of our mother’s body to a sustained independence, breathing and eating as an individual. The moment of birth is pivotal as the first trial in a human being’s life. The interdependent water creatures we were while in the womb are no more as we are reborn, now air-breathing individuals. 22

The poietical aspect of using the mythic in pathography matches the theoria of the autobiographical genre that Hawkins explains: my research is about me and the other subjects, but even more so, the project as a whole is a cultural document. Living in post-

9/11, twenty-first century America, heroes and Campbell are culturally relevant.

However, I finally chose to rewrite Sue’s chapter in January 2007 because Sue’s prognosis is now poor. I cannot save her by comparing her to Moses or Jesus, even though I wish I could. Sue’s story deserves to stand on its own. Thorough explanation of exactly how and why Sue is heroic is not needed for the audience to see it is true. My desire to use Campbell in telling Sue’s story was not the reaction of a careful pathogynographer, but of a friend. As a pathogynographer, I realised that using Campbell in Sue’s chapter only distracted from the importance of her story.

Hawkins calls myth “a way of articulating deep personal and cultural truths…that transcend the limits of what can be expressed in ordinary speech” (1999:20). In Sue’s chapter, it takes all my strength to avoid screaming in the text, “Why is she dying?

Please, God, do not take her away. She has a little girl; she has a husband; she has people who care about her.” So, I attempted to use the mythic in early drafts of Sue’s chapter, as

Hawkins describes it, to articulate what I cannot express in ordinary speech.

Susan Sontag, however, is against thinking of illness as metaphor in Illness as

Metaphor. Hawkins touches on Sontag’s work, criticising Sontag’s stance against using myth and symbol in illness and arguing that Sontag herself participates in what she claims to be so vehemently against. And it is intriguing to consider Sontag’s opening, which uses the phrase, “kingdom of the sick,” in a myth-like genesis of how “everyone

(who is) born holds dual citizenship” in both the “kingdom of the well” and the “kingdom 23

of the sick” (Sontag 1979:3; Hawkins 1999:23). Sontag ironically positions her book

against myth in a fairy-tale like setting. While I understand Sontag’s strong feelings against mythologizing illness, I also disagree as a pathogynographer. Because women are not recognised in traditional myth as the central heroes, I wanted at least one of the twelve women to be shown as such. What is more powerful than death in life? Many of the women in the volume beat death. It is a mythic accomplishment. There is no escaping the tendency to utilize myth in the re-creation of illness narratives as meta-ethnographic

pathogynographer and autopathogynographer. And perhaps that is where Sontag differs.

Her work was based on her experience with cancer, but was not an illness narrative.

Rousseau says that the prevalence of mythic metaphor in suffering is “in the

Jungian archetypal sense,” and I believe this to be true (Rousseau 1986:169; Hawkins

1999:27). I have read all of Jung’s work on the archetypes and mythology, on aspects of

both the feminine and masculine, but only after my experiences with cancer. Though I

had never read Jung directly before my cancer experiences, I felt as though I was waging

a great battle of duality, good versus evil. I was the good; the cancer was the evil. When I

finally did read Jung in 2003, I found resonances in my own experience with Jung’s

description of duality in the collective unconscious and universal symbols, or archetypes.

Jung hung this Latin phrase over his door, “Vocatus atque non vocatus, deus a derit,”

which means that God is present, bidden or not. “God” is present as dictated in the

archetypal symbols common to the human collective unconscious, whether we want God

there or not. In a way, this realisation was a relief. Until that point, though I knew others

had suffered with cancer, I still felt very isolated, alone. I did not know any previously ill

individual who had been physically handicapped by cancer, like I was and still am. By 24

using Jung and Campbell to help explain my own illness, and recognising that others also

had similar feelings and ideas, I was able to begin to process the thought of writing the

illness narratives of others. Without Jung and Campbell’s influences, I would not have

been able to approach writing My Truth: Women Speak Cancer. Hawkins’ final words

about myth in pathography confirm not only the compulsion, but the benefits to the

(auto)pathographer of using myth:

Moreover, in pathography the need to tell others so often becomes the wish to help others: perhaps the movement from catharsis to altruism is a signal of the success of the formulation. (Hawkins 1999:25)

It was during my own catharsis as I began writing My Truth: Women Speak

Cancer that I started a not-for-profit organization to help other brain tumor patients pay

for clinically-based costs that are not covered by health insurance. I called the organization the Phoenix Fund after the mythic bird rising from the ashes of her death,

reborn anew. It is how I saw myself, and how I hoped others would also begin to see

themselves. As cancer patients, it is too easy to think in terms of ends and finality.

Instead, I wanted to inspire the feeling of new beginnings, of rebirth. Theoretical becomes poietical, then, praxis. And this is what Hawkins calls “healthy-minded pathographies” where the myth itself becomes the medicine (1999:30).

In My Truth: Women Speak Cancer, I begin to question whether the patient has

any influence over the disease based on attitude or personality. I use a transcript from a

1998 conference on psycho-oncology to illustrate that studies show that distinct

personalities do influence survivorship.4 Sontag opposes this idea as it “undermines the

‘reality’ of the disease” (Hawkins 1999:40).

4 See www.cmbm.org/conferences/ccc98/transcripts/103.html 25

In most of the chapters, I find correlations between constant and consistent

emotional stress in the women’s lives and their original diagnoses. Yes, cancer is a

biochemical derivative. However, can one not paralyze themselves with fear at the

thought of open spaces, like agoraphobics? Or, begin to feel sick at the mere thought of

something the individual holds to be grotesque? Teri mentions that the day of her

daughter’s wedding, the day she would face her ex-husband and his family who remained

angry with her for marrying her present husband, Bill, she felt the same physical pain in

her arm as when she received intravenous chemotherapy during her cancer treatments

(which ended in March 2004, nine months before her daughter’s wedding in December

2004). The very same feeling caused by a physical reaction to physical pain was evoked

by an emotional response to Teri’s current psychological state. Her fear caused her pain,

in the same arm, in the same place, as when she received intravenous chemotherapy.

Kathryn talks about how her father committed suicide a mere six months before

her first diagnosis, after the family made a traumatic move across the country from

California to Massachusetts: “We were incredibly poor in California, but it was worse in

Massachusetts, and on top of that, we knew absolutely no one. It was miserable.”

Sue discusses how she had divorced six months prior to her diagnosis; the divorce

was difficult, but the previous five years before the event had been a situation of constant

and consistent emotional stress for Sue. Relations with her husband were minimal and

Sue was even considering the possibility that perhaps her first husband may have been

gay.

Jacquie’s husband had discontinued relations with her after the birth of their first

(and only) child, just nine months before her diagnosis of thyroid cancer. During that 26

nine-month stretch between birth and diagnosis, Jacquie was feeling a range of emotions

including confusion, anger and sadness about the situation with her husband, with no way

to express it as her husband became “a shell, almost robotic”—as well as the emotions of

being a new mother, feelings of joy and happiness. Having a child is usually a mutually

joyous event that often brings couples closer together. Although Jacquie was ecstatic at the birth of her son, she simultaneously felt like “an acrobat without a net,” alone and isolated, her husband there, but not there.

Alanna is diagnosed with blood clots and Lupus at several crucial moments in her

life that parallel consistent and constant emotional/psychological pain, such as an

encounter with her stepmother at age 19 that alienated her from her father for over a decade. “I kept feeling this pain in my leg. It started after the fight with my stepmother

but I didn’t get it diagnosed until about three months later. It was a blood clot, my first.”

Marina feels that the stress of owning her business, and then, the loss of her

husband’s job (which provided the family with health insurance), pushed her to the point of cancer: “The stress was too much. I felt like I couldn’t breathe at times.”

Maxene says that she “fights too much” and feels that because of her personality,

she may have brought on the cancer.

I also feel that my cancer was brought on by consistent and constant emotional

duress. In 1991, I was a newly single-mother, abandoned by my family; the father of my

newborn son violently abusing me. In 2001, after suffering from four years of multiple,

daily seizures, I was diagnosed with a second brain tumor. In 2005, when diagnosed with

Melanoma, I had also endured over two years of constant and consistent work-related stress. After the Melanoma diagnosis, I prepared to quit my job. 27

I do not believe in coincidences. There are too many parallels between what the

women describe and my own experiences to link the psychology to the physiology. In the

November 2006 issue of Cancer Research, virologist Ronald Glaser reported on his

findings that the stress hormone, norepinephrine, spurs lab-grown cancer cells to release

several compounds that allow the cells to move to other areas of the body, thereby

metastasizing (Ferber 2007:122). A third compound, also released from norepinephrine,

delivers nutrients to tumors, helping them grow (Ferber 2007:123). From theoria to poiesis, and finally, praxis. Stress really is a contributing factor to cancer. However, the small sample of cancer survivors in my research project already knew this before

Glaser’s findings were reported.

In the same vein as stress being relational to the development of cancer, Hawkins

hypothesizes that the idea of the “cancer-prone personality” is analogous to the older notion of sin being connected to disease (1999:41). She quotes John Donne, “sin is the root and the fuel of all sickness”, and refers to Beaty’s quote by an anonymous fifth- century writer, “bodily sickness cometh of the sickness of the soul” (as quoted in

Hawkins 1999:41). Sin is only the thought of wrong-doing, and every person I describe above, each woman, was worrying about wrong-doing of some kind before being diagnosed with cancer—not that they are sinners, quite the contrary. It is the consistent and constant negative thoughts and emotions that follow, which may create a window of opportunity for cancer to creep into a weak biological opening in an individual’s body, based on extensive anecdotal evidence, and now, Dr. Glaser’s findings. Dr. Peter Black, an internationally known neurosurgeon and researcher says that part of the cure (for cancer) is “living a good life,” but Black acknowledges that there is no known way to 28

measure the mind-body connection, so no explicit directions as to how to accomplish this

task.

Hawkins focuses on the illness narrative of Anthony Sattilaro, a doctor who is diagnosed with cancer, to exhibit this trend in illness narrative. Another doctor who suffered illness but believed in his power of mind to heal the matter, and then wrote about it, was Norman Cousins. Cousins says that “affirmative emotions (are) a factor in enhancing body chemistry” and goes on to talk about how he alleviated pain through laughter (Cousins 1979:43). While going through my cancer experiences in 1991 and

2001, I had little belief in the mind-body connection. Like Sontag, I felt that idea was harmful to the patient because it enhanced the societal notion that somehow a patient contributes to, and therefore on some level deserves, her illness. This is the danger in believing that the mind-body connection can cause cancer as well as cure it. It should be

understood that the mind cannot cause cancer. Instead, the blame is more likely placed on

environmental and familial factors. However, the mind can certainly influence cancer

through stress, both in the contracting of the disease, and in healing it. But then, how does

one face the notion of death? If we believe that the mind can influence the disease and

our recovery, how do we explain when an individual dies? Was she weak-minded? This is where the experience of Stephanie comes into play.

I mentioned in the introduction that writing My Truth: Women Speak Cancer helped me to move beyond the perception that death is a weakness. This is true through my 2006 experience with Stephanie, who died from a recurrence of breast cancer.

Hawkins describes the aspects of death and dying as ars moriendi, or the art of death, 29

traced back to the fifteenth century text by Jean De Gerson, Opusculum Tripartitium, a

guidebook on death (Hawkins 1999:93)):

Indeed, death seems to be the kind of existential fact that particularly evokes myth: almost all cultures have, at least in their history, a body of myths that describe the life of the soul after death…. (Hawkins 1999:93)

Kübler-Ross’ On Death and Dying, was the twentieth century answer to what De

Gerson began. A more complete explanation of Kübler-Ross is necessary and will be

continued in the following subsection.

2.2 Elisabeth Kübler-Ross

“We thought about death, my death, my scant time to be alive, our scant time to be together. We skipped over treatment and miracles and went straight to death.” Deborah Cumming, Recovering from Mortality: Essays from a Cancer Limbo Time (2005:6)

The subject of death and dying is a difficult one. Kübler-Ross explains it best:

“Death is never possible in regard to ourselves…in our unconscious mind we can only be killed; it is inconceivable to die of a natural cause or of old age. Therefore death in itself

is associated with a bad act…for retribution and punishment” (Kübler-Ross, 1969:17).

Many of my interviewees, including Sue, Stephanie, Teri, Joan, and Alanna, felt that the shadow of impending death through cancer was cast upon them by God:

Sue: Please, God, I know you won’t give me anything I can’t handle, but I can’t handle anymore. I’m tired, I’m scared. Please, no more….

Stephanie: I have faith that God is going to see me through. I believe in miracles. God got me into this, and he’ll get me out, too.

Teri: I felt so much joy during my treatments, I knew it was God’s way of… 30

…letting me know everything would be okay.

Joan: God sent my father to me in a dream so I would find the cancer. God wanted to scare me straight, and it worked!

Alanna: I don’t know what God is thinking. Our family has had enough….

Even I thought of God once or twice, but never prayed. I refused to pray. Not because I was angry, but because I felt that if there was such a being as God, then God certainly did not afflict me with cancer deliberately, nor did I feel God was going to come down and sprinkle miracles on my head. I felt alone, but I still had faith in myself, and, in my family. It was interesting to see how each interviewee perceived her disease and its relation to death.

Kathryn, Jacquie, Maxene, Judy, and Ivy did not bring God into their interviews. I am certain that God must have been in their minds somewhere along the course of their cancer experiences simply because the theology is so strongly identified with western society, especially in the predominantly Christian United States. Yet all the interviewees considered death, especially those with children.

Kübler-Ross discusses how it is important for children to be included in these discussions, that if children are not included, they may feel betrayed and then isolated

(1969:20). She also shows the striking parallel between an increased societal anxiety towards death, and the rise of medical technology: “We use euphemisms, we make the dead look as if they were asleep, we ship the children off to protect them from the anxiety and turmoil around the house if the patient is fortunate enough to die at home…”

(1969:21). 31

I watched Stephanie die in her home. I watched her children play around her

dying body for brief moments, then, be taken by an aunt or grandparent to a store to buy toys or books, or to get an ice cream—all distractions for the children of a dying mother.

Upon Stephanie’s death, it was surreal to see her children running around her casket, playing hide-go-seek, their mother, dead. Her face was painted on and false nails were placed over her real ones to cover any sign of lifelessness. At the funeral, her children ran around again, the priest talking about how their mother was taken by God to teach all who are left on earth a lesson.

Those experiences surrounding Stephanie’s death were terribly traumatic for me,

a woman in my mid-thirties. I kept wondering what her children were thinking, really

thinking? The adults around them encouraged their nonchalant attitudes about the death

of their mother because it made the adults feel better, not because the children felt good

about it. Kübler-Ross discusses how a child will sense when something is wrong and

calls the distractions listed above “a meager substitute for a loss (he is) not permitted to

deal with” (1969:20). Stephanie had been telling her children, since her diagnosis in

2003, that she had a mere “boo-boo” and the medicine she was taking only seemed to

make her sick, but was really making her better. As she continued to deteriorate, in

January 2006, several months before Stephanie’s death, she told her children, then eight,

six and two, that the medicine was not working, and her boo-boo was not getting better,

nor would it ever get better. Stephanie told me that her six-year old daughter looked

down, then back up again and said, “I know, Mommy, you’re dying, right?” And her

eight-year old son then ran out of the room and upstairs, his head buried in his pillow to

stifle his sobs. Her two-year-old could not possibly understand what was happening. In 32 his world, his mother had always been distant as she was acutely ill his entire life.

Stephanie was terribly pained by the whole experience, and her husband, Mark, was not facing her illness, never mind her death. It was Stephanie’s mother, Linda, who told me when I asked how she managed the strength to not scream at Mark in frustration and anger, to stay calm, and be there for Stephanie, “It is the best gift we can give a loved one, to help them die with dignity.” Kleinman also discusses how caring for a sick- individual, as Linda did for Stephanie, is often an opportunity to grieve (Kleinman

1988:32). This is what Linda was doing in caring for Stephanie.

Alanna and her husband, Tim, had also decided, like Stephanie, to avoid telling their young sons, five and three, about Tim’s cancer and Alanna’s health problems.

Housel: What did you tell Evan and Ben about the health issues with you and Tim?

Alanna: We told them that Daddy had a boo-boo on his neck; that he had gotten the boo-boo while traveling for work. I don’t tell them anything about myself. But it is funny how Evan becomes very anxious when he sees the T-shirt Tim was wearing when he came home from the hospital after his surgery. Evan hates that shirt, and usually tells Tim to take it off, even though it’s a shirt that Evan made for Tim the Father’s Day before Tim’s diagnosis.

Thirty-one years after On Death and Dying was published, Kübler-Ross wrote another book with David Kessler called Life Lessons, where the two sum up the value of dealing with death in life as a patient, “Looking right into the ‘eye of the monster,’ facing death directly, completely and fully, they surrendered to it—and their view of life was forever changed as they learned a lesson of life” (2000:23). Kübler-Ross suggests that

“The dying know what they are losing and understand its value. It’s the living who often kid themselves” (2000:77). Even in the face of her imminent death, Stephanie’s husband, a perfectly healthy individual, refused to acknowledge her suffering—most likely 33

because of his own. He, like his eight-year-old son, was burying his head in a

metaphorical pillow, and by doing this, he isolated Stephanie even more:

Housel: Why do you think Mark is acting so strangely around you?

Stephanie: Mark is just afraid but I understand. He doesn’t want to lose me.

Kübler- Ross goes on to talk about a woman named Margie and her nine-year-old son,

Scott, who snapped at his mother that he wished she were dead after she told him he

could not participate in a camping trip because he had not completed his homework

(2000:108-109). Margie was dying of cervical cancer, which had spread to her liver,

similar to Stephanie. Margie calms Scott by telling him she knows he does not mean that he wants her die; she wants him to know that when she dies, it is not his fault, “We have

so little time left,” is Margie’s final comment (Kübler-Ross, 2000:109). Stephanie’s

reaction to Mark is similar. She realised that the two had little time remaining, even if he

could not face it. Instead of further burdening him with guilt, she allowed him to do what

he needed to get through the difficulty, even if that meant receiving less of what she may

have needed at that time.

Kübler-Ross also touches on a similar situation to Sue, whose identical twin

sister, Amy, suffers simultaneously from terrible guilt at not sharing the disease with Sue,

and relief at not having the disease her twin has suffered with for years. From Kübler-

Ross, Kim, Kate’s twin sister, was diagnosed with colon cancer; Kate responds, “Besides

making me feel like a part of me would die if she died, Kim’s disease—and her life— really shook me up” (Kübler-Ross and Kessler, 2000:132). Amy felt similarly about 34

Sue’s first diagnosis. Amy was living in San Diego, California when sister, Sue, was first

diagnosed with ovarian cancer in 1997. Amy moved back to western New York to be

closer to Sue as Sue faced the disease for an eighteen-month stretch of surgeries and

chemotherapy before being declared cancer-free. Sue had married during her illness. She

was a nurse and owned a home. She and her husband were doing well, but Amy could not

bear to leave. Amy chose to stay in western New York though she was no longer needed.

Housel: Do you ever feel that you were unable to move on with your life because of the fear surrounding Sue’s illness?

Amy: Yes, but I want to say no. But it is yes. I broke off two engagements. I’m in my forties now. I want to be married but there is always something that holds me back. Maybe I’m afraid that I’ll get cancer, too, but I think it’s more that I just can’t take my focus off of Sue. I’m afraid that if I get married, my husband will distract me from her, and I don’t want that. What if something happens, and I’m not there for it? I can’t live with that.

“True freedom is found in doing things that scare us the most. Take a leap and you will find life, not lose it” (Kübler-Ross and Kesselman, 2000:143). As Kübler-Ross says earlier in the section, “We all live with the possibility of death, but the dying live with the probability,” and there is a certain freedom in that knowledge, though it comes at a high cost (2000:141).

2.3 Anne Hunsaker Hawkins on Cousins and Couser

“I made the joyous discovery that ten minutes of genuine belly laughter had an anesthetic effect and would give me at least two hours of pain-free sleep.” Norman Cousins, The Anatomy of an Illness as Perceived by the Patient (1979:43)

“Cousins’ story of his transition from a hospitalized patient with a serious illness

to a sick person who leaves the hospital, researches his own condition, and assumes

responsibility for his own treatment is worth looking at closely” (Hawkins 1999:133). To

Hawkins, Cousins is the most visible of the healthy-minded pathographers of the last

century. His work, The Anatomy of an Illness as Perceived by the Patient, provides

support for the idea that a patient can claim agency over what seems to be beyond their

control: their illness…and death. But Cousin’s never actually talks about fear and death.

Those dark emotions are absent from his account, and Hawkins feels that this absence

makes sense, that “the ‘sick soul’ is not represented” in what Hawkins terms “a manifesto

of healthy-mindedness” (Hawkins 1999:134).

As I wrote My Truth: Women Speak Cancer, it was not with the privileged knowledge of a physician, like Cousins, but with the less fortunate knowledge of being a survivor of multiple cancers. Part of the necessity of writing illness narrative is to be as honest as possible. Cousins is not being honest when he leaves out the fear, the anger, the emotional pain. His book serves a unique purpose in the world of pathography as purely inspirational. After reading Cousins’ book, I felt better. I gave it to all the interviewees suffering through recurrences, so they, too, could feel better. Cousins’ writing is not 36 meant to explore the whole condition of illness, but My Truth: Women Speak Cancer is. I do hope that My Truth may function as inspiration to some but also understand that the exposed emotions, often raw within the text, will not make for the easy, warm reading provided by Cousins.

*****

Hawkins completes her study of pathography by looking at trends in the genre, one of which is the increasing popularity of looking at both disability and disease, something that My Truth: Women Speak Cancer also does through my own chapter, inevitably, as I sustained paralysis in my left leg after neurosurgery to remove my second brain tumor in 2001. Kathryn also suffered from disability after her leg was amputated in

1974 because of the Osteosarcoma. Thomas Couser also does this in his text, Recovering

Bodies. Hawkins feels that this trend in pathography reflects the national (U.S.) trends in health care and its delivery (1999:171). This naturally makes sense with Hawkins early thesis on pathography and myth: pathography not only represents an illness experience, but also the cultural relevance of the times.

G. Thomas Couser wrote Recovering Bodies: Illness, Disability and Life Writing in 1997. Couser’s text influences not only Hawkins but also My Truth: Women Speak

Cancer:

“Only a fraction of those who are ill or disabled actually write, let alone publish, narratives. One reason is that the conditions that may stimulate autobiographical reflection may also obstruct its expression” (Couser 1997:5). Couser is not just referring to the trauma of reliving the pain and grief associated with illness and disability, but the physical and cognitive factors as well. Couser is the first critic of pathography to 37

recognise that those of us who are ill individuals may not be able to write because of the

disability that comes with the disease. This enters into the equation with My Truth

because I am that disabled-through-illness pathographer. To sit at the computer and type

is no longer an easy feat. My left leg is paralyzed, and so the circulation is poor. Because the circulation is poor, sitting at a desk and writing with my knee bent is physically uncomfortable. After thirty minutes, my leg begins to turn purple. After one hour, my leg

becomes quite cold. After two hours of sitting and writing, my leg is numb. To undertake

sustained writing required my assessment of not only my emotional and cognitive

abilities, but my physical condition as well. Though many of the interviewees did not suffer sustained disability from their illness, they, too, had difficulties telling their story.

Housel: Was it hard for you to get here?

Stephanie: No, Mark has the kids. I wasn’t feeling great, but I really wanted to meet you. It’s important for me to tell my story—I’m not really sure why, but I was willing to risk being sick to do it.

Stephanie met me in a bagel shop in October 2005 to complete our interview series,

which began in October 2004. Though I felt she looked relatively healthy, she was

wearing a wig to cover the hair loss from the chemotherapy treatments. Her nails had

ridges and were yellowed, also from the chemotherapy treatments. When she showed me

pictures of how she looked before her diagnosis, the change was remarkable. Her skin was now dull and she was fairly bloated from being infused with chemotherapy every week. She told me that her toe nails were discolored and that she was much more sensitive to touch—a simple hug hurt. Even a handshake could cause her pain. And yet, she still chose to leave the safety and isolation of her home to meet for our final

interview. Because Stephanie was so acutely ill, I was not able to interview her in person 38 before our meeting in the bagel shop. Chemotherapy depletes a patient’s immune system.

Patients then need to avoid outside contact with others so as not contract infections. Even a cold germ could be deadly to a cancer patient on chemotherapy. We had corresponded through email and phone conversations only until that point in October 2004. Stephanie insisted on meeting in person. She wanted me to see her face as we spoke. I found this to be important as well, and was happy to meet her in person at last, but did not want to jeopardize her already fragile health. This is what Couser refers to in his observation regarding the difficulties of the ill-individual in not only writing and publishing a pathography, but in the simple relaying of the information, too.

Couser continues by discussing Arthur Frank’s postmodern theory of pathography as being “distinguished by the impulse of patients to reclaim their bodies and their stories from medical discourse” (Couser 1997:11). This is shown perfectly through Stephanie’s drive to not only complete our interview series, but to do it in person, despite the difficulty and personal peril she put herself in to achieve this goal.

Marina was also driven to reclaim agency over her disease and her life through the interviews. Marina began talking to me before she started treatment. After her surgery and radiation, but while on chemotherapy, she pushed to continue our interviews, despite her loss of hair, depression, and nausea from the oral chemotherapy course she was on:

Life is short, for all of us. If not now, when would I have more time to tell you what has happened to me?

*****

Couser then goes on to discuss the difference between the effects of lasting

dysfunction due to illness as opposed to a relatively short period of acute illness that

leaves the patient with no physical, sustained disability:

prolonged, serious, or chronic illnesses or disabilities may ultimately yield more complex and multidimensional narratives than acute illnesses…because lasting dysfunction has to be lived with a long time, rather than survived as a mere episode. (1997:12)

Couser describes both my experiences as well as Kathryn’s. In My Truth, Kathryn is the longest survivor at 30 years at the time of interview in 2005; I am the second longest survivor in the book at 16 years. Both Kathryn and I share a lasting dysfunction

due to illness. Kathryn lost her leg to cancer during her first diagnosis. Then, she lost her

knee during the recurrence several years later. I lost my mobility after surgery in 2001

following the second diagnosis of a brain tumor. Kathryn has been dealing with this

sustained disability due to illness longer than I have. Her story is more complex and

multidimensional than those of Joan or Jacquie, who each suffered brief moments of

acute illness during their cancer experiences and now live relatively healthy lives with

only the occasional interruption in the form of an annual scan or body check to remind

them that they had the disease at all. I felt that telling both Jacquie and Joan’s stories was

equally important as telling the story of Kathryn.

My Truth: Women Speak Cancer is meant to raise awareness of the female cancer experience at all levels. While both Joan and Jacquie’s chapters lack the complexity of survivors who have endured longer bouts of illness and sustained dysfunction from that illness, like Kathryn, theirs are still authentic stories and authentic cancer experiences that affected the lives of both women in profound ways. Jacquie faced fears and truths she did 40 not want to face, as did Joan. Both women say that the illness experience significantly impacted on their lives:

Jacquie: Cancer teaches you about life. I only wanted to make my time with my son as rich as possible, regardless of the cost. He became the most important factor in my life. If I hadn’t have gotten the cancer, would I have felt the same? I’m not sure.

Joan: I was so scared at the thought of dying, even though I was not really close to death—but the idea that I had a cancer that could eventually cause my death was overwhelming and changed many of my ideas about life, especially surrounding my kids

“Comic closure may be particularly misleading in the case of breast cancer, now considered a systemic rather than localized, disease” (Couser 1997:40). Comic closure refers to the perfect ending of a narrative written by an individual who has completed the cycle of illness, treatment, and recovery, specifically regarding breast cancer narratives.

Couser finds such narratives to be dishonest to some extent as “having had cancer almost always means being susceptible to recurrence” (1997:41). There are limits to pathogynography in this sense.

In My Truth, I attempt to not mislead the audience by promising cure. Again, my experience as a long-time survivor of multiple cancers gives me the insider knowledge that beating cancer does not mean the cancer will not return. In my own chapter, I say at the close that I am cured, and even if the cancer returns, it no longer matters. Cure is not used as an absolute end to my continued physical suffering with cancer and disability; cure means that I understand the nature of cancer, and in that understanding, will be able to deal with a recurrence with a more healthy-minded approach, as opposed to my 1991 41 diagnosis, where I went into serious financial debt to purchase clothing and future gifts for my then young son in the event of my death.

Closure is important in any narrative, and Couser gives this consideration in his analysis, even mentioning that without closure, it would be not only difficult to write such a narrative, but to also get the narrative published, and to attract an audience

(Couser 1997:40). My Truth: Women Speak Cancer faces these same obstacles. The book encounters death, even post-mortem narratives as with Ivy and Judy. The truth is not always a marketable commodity but the running thread of my own story throughout each chapter, which does not end in tragedy and is openly acknowledged as not the “end” of my cancer experiences, is the difference between what Couser discusses regarding closure in illness narratives. There is no closure, and in fact, there are After Words that update the reader as to the condition of each interviewee after the time that the chapter was completed.

Couser’s exploration of cancer discourse is of particular interest in the context of

My Truth: Women Speak Cancer. Terminologies such as benign and malignant in relation to cancer “stigmatize and marginalize the ill, condemning them in two senses— simultaneously censuring and sentencing them” (Couser 1997:45). This is part of the language of cancer previously discussed (in section 1) and why I attempt to indicate the separateness of cancer language and typical language through the latter part of the title

Women Speak Cancer. Couser uses Sontag’s attempt to redefine cancer discourse in her work, Illness as Metaphor, where she claims the terms benign and malignant relate to “a form of demonic possession” (as quoted in Couser 1997:45). 42

Couser later discusses paralysis in illness narratives. My partial paralysis, which I write about in My Truth: Women Speak Cancer, directly influenced the volume. “The story of the disabled male is privileged because of the semiotic clash between the modifier and the noun, whereas the story of the disabled female is ignored because of its apparent redundancy” (Couser 1997:185). Couser goes on to say that the story of the disabled through illness is often “unwritable” and “unreadable” unless the individual claims “compensatory power and freedom” as both Kathryn and I do in our respective chapters in My Truth: Women Speak Cancer (Couser 1997:185). Couser notes that there is a lack of diversity in narratives about disability because of the socio-political connotations, “In a patriarchy, of course, such compensations are more available to men than to women” (Couser 1997:185). Couser continues by saying that successful narratives that include disability show “the redemptive shifting of emphasis from the body to the mind” (1997:185). This is true with again, my chapter and Kathryn’s chapter:

Kathryn: I don’t think about it as being disabled. In fact, it wasn’t until this year that I started to request wheelchair service in airports.

Housel: How did you get around?

Kathryn: Same as everybody else. I walked, or hobbled, as the case may be.

In her answer Kathryn uses Couser’s “comic plot” by making a joke out of her ability to

walk. Kathryn uses her intellectual prowess to equalize her physical “weaknesses” and I

do the same, often making self-deprecating jokes regarding my four-wheeled purple

walker that I use as a source of stabilization when walking.

Couser ends Recovering Bodies with final thoughts on the genre of pathography as literature. Couser feels that pathography serves not only those in the immediate circle 43

of illness, such as the patient and her family, but those outside of the circle, such as co-

workers and friends of the patient and her family. “One of the most fundamental

functions of illness narrative, then, is to validate the experience of illness…” (Couser

1997:293). Couser also suggests that such illness narratives help to teach those not

afflicted with illness how to behave appropriately around those who are ill. My Truth:

Women Speak Cancer is meant to do these very things. Those who have been fortunate enough to not know any person with cancer will be able to perhaps gain insight into the condition of illness and disability. The patients who read the book may see themselves in the stories of each interviewee and then modify or change their own actions and reactions to avoid problems encountered by the interviewees. The families and friends of patients may choose to use My Truth: Women Speak Cancer as a way to not only gain insight into the experience of the patient, but to also start important conversations that will provide emotional support to both the patient and her family. “Thus, if illness and disability are reminders of our immortality and frailty, narratives of those conditions are testaments to our resilience and vitality” (Couser 1997:295). Ultimately, My Truth: Women Speak

Cancer embodies the inspiration of women’s “resilience and vitality” in the face of

cancer.

2.4 Arthur Kleinman

“Definitions of disability affect people’s self-identity.” Susan Wendell, The Rejected Body (1996:12)

The moral lesson illness teaches is that there are undesired and undeserved pains that must be lived through, that beneath the façade of bland optimism regarding the natural order of things, there is a deeper apprehension of a dark, hurtful stream of negative events and troubles (Kleinman 1988:55).

In his comprehensive book, The Illness Narratives: Suffering, Healing and the

Human Condition, Arthur Kleinman, a Harvard psychiatrist and anthropologist, explores

and defines illness, and suggests that illness itself is a mode of exploration that provides a

framework for defining the human condition. Though Kleinman’s book was published in

1988, it is still one of the foundational texts for the study of illness narrative today.

Kleinman’s above sheds light on the ideas discussed in Couser, Hawkins and Sontag, that

illness is somehow deserved, a punishment for sin. Kleinman parallels Sontag’s earlier

work which critiques the mythologizing of illness as dangerous. As a three-time, sixteen-

year survivor of multiple cancers, I must agree with Kleinman’s quote.

Ultimately, that is all illness is—“undesired and undeserved” pain. Kleinman was

the first to call attention to the patient’s narrative for doctors and medical students,

referring to the process of collecting a patient’s narrative as “mini-ethnography”, a

revolutionary idea at the time (Kleinman 1988:230). Since Kleinman’s breakthrough,

others have followed, like Rita Charon, who developed what Kleinman started through a

now world-wide trend in medical schools where doctors are instructed to actually listen

to and document their patients’ stories, asking not just about a patient’s symptoms, but

about the ill individual’s very life. This is an important trend in patient care, and directly

affected My Truth through my own story as well as the story of Sue. 45

In 1991, when first diagnosed with a brain tumor, I was lucky in that I was treated

by a man I did not know, Peter Black, but who listened to my story—my truth—not just my symptoms. I did not know many doctors at the time and like every newly diagnosed patient, one tends to not be aware of what has never affected you before. I was the first in my family to be diagnosed with a brain tumor. Dr. Black first met me late at night. He had just come from a surgery. I was hospitalized because of a severe allergic reaction to the medication given to me by my neurologist after suffering from a grand mal seizure.

While in the hospital, I had a CT scan that showed the tumor. Dr. Black wore blue scrubs as he entered. I was terrified about what this all meant, barely 20 at the time, and a new mother to an infant son. My first question to Dr. Black was, “Is this something my son can inherit?” I did not even know Dr. Black’s name when I asked the question. My primary concern was my baby and his future health. Dr. Black, recognising that there was more to me than my Astrocytoma, the brain tumor I was diagnosed with, began asking me about my life. This simple action empowered me as patient and helped me to develop what is surely a skill that I have used ever since: becoming a self-advocate. When you are

a patient, not all doctors will want to ask about your personal life. They are not always interested in your experience, only your symptoms. Through my early interactions with

Dr. Black, I learned that I had rights and the final say over anything that was prescribed by any doctor. Dr. Black humanized doctors for me, a lesson I shall never forget.

Dr. Black had suggested we biopsy the tumor before doing surgery. I requested

that we just go ahead and do the surgery instead. My rationalization was that if we had to

go in, why not do it all at once? I also asked to be awake for the surgery. Dr. Black

agreed to both requests. This was the beginning for me. So, I found it quite interesting as 46

I did research on illness narrative many, many years later, to discover Kleinman’s work, who just three years before my 1991 diagnosis, had written his text.

Curious as to whether or not Dr. Black, who also taught at Harvard, knew or read

Kleinman, I asked him during my last appointment in June 2006:

Housel: Have you read Arthur Kleinman’s work? You share the same philosophy….

Black: Yes, I have read it and know Arthur. Though my philosophy has always been the same—the patient comes before the disease. Arthur influenced a great deal of the professors who taught in the medical school at the time. A new generation of doctor was born, and much of it was due to Arthur’s work.

Before I had even an idea about what illness narrative meant, or who the major influences were in the genre, Arthur Kleinman’s work was affecting me and my attitude towards my illness, my condition as a patient, and the doctors who treated me. I believe that much of my survival is due to this influence, and of course, to Dr. Black. Perhaps Kleinman’s theories are the most influential of all on My Truth: Women Speak Cancer in this way.

I was not the only one of the subjects in My Truth to be influenced by Kleinman’s work. Sue was also fortunate enough to be treated by a doctor who felt the patient’s story was equally important to the disease she suffered with:

Dr. Angel is such a God-send. We all joke about how her name fits her. She is more like a friend than a doctor. She is interested in my life, not just the cancer. She wants to know how I’m feeling inside and out.

Kleinman discusses how the patient’s story puts the disease in a cultural context that allows a physician to more effectively and humanely treat the patient (1988:96):

American women of the middle class who articulate somatic idioms of distress communicate their distinctive biological and psychological problems together with the shared cultural tension of an unresolved conflict between the traditional expectation of family life and the desire, intensified by contemporary social pressures, to experience personal freedom (Kleinman 1988:97).

This is apparent in the interviews with Maxene, Joan, Kathryn, Alanna, Teri, and myself.

Maxene noted during her interviews that after her first cancer diagnosis, she felt more

free and did everything she wanted, including returning to Australia, painting, even falling in love, marrying, and becoming a mother at fifty. She also expressed how things had changed after her second diagnosis, as she was married with a family. She felt very restricted. She stopped painting. She moved from Australia to Boston to enroll her school-aged son in a private school because she felt it offered the best education. She sacrificed personal freedoms to uphold the traditional expectations of family life. She wants to live in Sydney. She wants to paint. For Maxene, this is a yet unresolved conflict of cultural tensions expressed when she began the interview process.

Joan expressed similar sentiments, though has only experienced one bout with cancer, unlike Maxene. Joan was also already married with children during her diagnosis, so the results of this cultural tension that Kleinman refers to manifested differently for

her. Joan seized personal freedom combined with traditional expectations of family life

by throwing herself into her job as a mother at the expense of her personal relationship

with her husband. She admitted that after her diagnoses she made her children her first

priority and placed her husband second. The two stopped going out alone together. All

vacations are family vacations. Even their anniversary, a time meant to celebrate each

other as a couple, means going to dinner with their children, or eating a family meal

together. Joan chose to free herself of any obligations with her husband to intensify her

family life.

Kathryn married long after her illness. She met her husband, Peter, after

maintaining a successful career as a pharmaceutical research director. As she faced the 48 possibility of long-term survivorship, having reached her thirtieth anniversary as a survivor, Kathryn decided to forego the traditional expectations of family life—living with her husband and their two dogs in the suburbs—for personal freedom. Kathryn left her husband and her home and her dogs and moved into an urban apartment. She physically rejected traditional expectations of family life in favor of personal freedom, less than two months after our initial interview.

Alanna, faced with a series of health issues since she was nineteen, has rejected personal freedom to uphold traditional expectations of family life. Her health issues, along with her husband’s, make for a difficult situation for having a third child. The couple has two sons, but Alanna desperately wants a third, despite the obstacles. It is as though Alanna translated her personal freedom into traditional expectations. Two months after our final interview, Alanna is trying to conceive again.

Teri, after being first diagnosed with ovarian cancer in 1989, decided to break the expectations of family life, opting for personal freedom. She left her husband, her home and her children to marry her current husband, Bill. Her first marriage was littered with difficult issues that Teri had dealt with for years. After being diagnosed, Teri decided that her personal freedom was more important than traditional expectations.

For me, with my three diagnoses over such a long period of time, I have faced all the same emotions regarding family life versus personal freedom that Joan, Kathryn,

Alanna, and Teri faced.

I know from my own experiences and from the stories my interviewees told me that Kleinman’s assessment of the American middle-class woman, expressing conflict when communicating her illness, is very true. This brings Wexler’s postmodern-caveat 49

about positionality in creative nonfiction to light. It is our positionality, our being

American middle-class women, that makes what Kleinman suggests true. Kleinman acknowledges this through his observation on the importance of perspectivism in ethnography, where the ethnographer respects alternative interpretations and the cultural perspective of the subject and other informants (Kleinman 1988:231). Kleinman compares doctors and ethnographers to poets and painters, all “strongly drawn to the details of perception” (1988:231).

Kleinman invokes semiotics, the study of symbols, to explain further. He suggests

that perspectives are like relationships among signs, indicating codes of deeper meanings

that are accessible to the ethnographer (Kleinman 1988:232). What makes each perspective of the My Truth subjects more accessible to me as ethnogynographer is my own experiences with cancer. The codes of deeper meaning are apparent because I, too, have experienced similar emotions and reactions to the circumstance of having a life-long illness. I do not feel that an ethnographer from outside of the cancer community would have the same understanding of these codes of deeper meaning. That is not to say that an ethnographer outside of the cancer community could not recognise the codes, but such an ethnographer’s understanding of codes will be limited by lack of personal experience. It is as Arthur Frank suggests, “illness is told through a wounded body” (1995:2).

2.5 Arthur Frank and The Wounded Storyteller

“The centrality of narrative to some forms of therapeutic practice dates at least to the end of the nineteenth century in the writings of Sigmund Freud.” Linda C. Garro and Cheryl Mattingly Narrative and the Cultural Construction of Illness and Healing (2000:6)

Arthur Frank, in his acclaimed work on illness narrative, The Wounded

Storyteller: Body, Illness and Ethics, begins with mythology to describe the ancient nature of the wounded storyteller using Tiresias, the blind prophet from the Sophoclean

trilogy of Oedipus. Frank also invokes the Old Testament story of Jacob, who becomes

injured while wrestling with an angel, according to Frank, but by an “eesh,” or “man,”

according to the Hebrew text. Frank also uses Kierkegaard to express the belief that

telling one’s life is taking responsibility for it; illness narrative is not just the mark of an

ill individual, but an ethical one (Frank 1995:xii). Calling his text a “survival guide,”

Frank goes on to classify illness narrative into three types: Restitution Narrative, Chaos

Narrative and Quest Narrative. Frank warns that his categories are meant to be used

loosely, “because no actual telling conforms exclusively to any of the three narratives”

(1995:76). Frank uses the word “restitution” to describe the narrative of a person who

wants to be healthy again, saying that the desire of the ill individual for health is part of a

societal expectation (Frank 1995:77). Frank himself suffered illness. A sociologist at the

University of Calgary, he interweaves his sociological training with his own experiences

as material for the volume.

Frank goes on to discuss the Chaos Narrative as a story that does not imagine

wellness and lacks “narrative order” (1995:97). Quest Narratives “meet suffering head 51

on; they accept illness and seek to use it” (Frank 1995:115). This is perhaps the category that best describes My Truth: Women Speak Cancer.

Using examples from John Donne and Friedrich Nietzsche, then comparing them

to Joseph Campbell’s hero cycle, Frank calls the Quest Narrative “a form of reflexive

monitoring” of the illness journey (1995:117). Frank goes on to show the three facets of

Quest Narrative, memoir, manifesto, and automythology (1995:119). My experiences

provide proof of Frank’s interpretations.

Memoir, according to Frank, is a retelling of the patient’s story in context with

other life events of the patient. Frank explains that this may also be interpreted as

“interrupted autobiography” where events are not told chronologically “but become

occasions for the recollection of certain past events” (1995:120). My Truth: Women

Speak Cancer uses the stories of each subject as the life event in which I reveal aspects of

my own story. Frank says “Memories of the past life interrupt the present illness,” as with

the style used in the first chapter on Sue where I begin in 2005 during the recurrence of

Sue’s ovarian cancer, switching to previous moments from interviews in 2004 and

sometimes moving forward to 2006, then, reflecting on pivotal moments in Sue’s

progress with the disease (Frank 1995:120). Sue’s chapter was unlike any other chapter

because Sue allowed me to be a part of her illness experience for many years. For most of

the other subjects, I only interviewed the individual after an illness experience, although

Stephanie may also be an exception, as she allowed me to witness and talk to her after her

final prognosis (though this was not included in her chapter except as a brief paragraph at

the end). 52

The manifesto aspect of the Quest Narrative exposes a socially suppressed truth

about illness that must be told (Frank 1995:121). This notion is one of the ideas that

spurred me to first conceive of writing about women with illness. I felt that critically

acclaimed films like Terms of Endearment (1983), Finding Neverland (2004) and

Sleepless in Seattle (1993), representing three decades of film and film-audience, put forth a social lie about women with illness as submissive, passive and weak; women became absent mothers after death from illness, leaving sobbing children behind to mourn them. I felt this was not the way real women dealt with illness and death, being one of those very women. It is also interesting to note that Frank puts the memoir and manifesto aspects of Quest Narratives together with narratives that involve disability and part of my manifesto was to show the world that if I could come back from sustained devastation, anybody, but specifically any woman, could. This leads perfectly to Frank’s

concept of automythology.

“Automythology fashions the author as one who has not only survived but has

been reborn” (Frank 1995:123). After my second recurrence of brain cancer in 2001,

sometime during the following years between 2002-2003, I decided that I was a phoenix,

the mythical bird that rises from the ashes of its death, reborn anew. I had transformed

during my treatments. I was no longer the same person physically, spiritually or

psychologically. I created several institutions to (unintentionally) build on my

automythology, a scholarship at the college where I teach called The Phoenix Fiction

Award Scholarship which encourages and supports student fiction writers through

monetary prizes, and a fund to help brain cancer patients pay for clinically-based costs

not covered by health insurance called The Phoenix Fund. My syllabi for my classes all 53 have a picture of a phoenix at the top of the first page. My first canvas, completed in

2006, is called “Self-Portrait” and depicts a phoenix rising from the ashes. For all intents and purposes, the phoenix is not just a metaphor for my illness and recovery, but a symbol synonymous with my person.

Both the Phoenix Fiction Award Scholarship and the Phoenix Fund have become entrenched in not only my world, but in the worlds I imposed each onto. The Phoenix

Fiction Award Scholarship has grown over the last three years and has now been adopted by the English Department faculty at Rochester Institute of Technology. Each year, more and more students submit original, unpublished fiction for the award. The Phoenix Fund has raised over $25,000 for brain tumor patients over the last three years, helping thirty families each year to pay for costs associated with their cancer. An annual walk takes place and is sponsored by an increasing number of local businesses. The Walk and Fund have become institutions in my local community. Did I know at the inception of these manifestations of my automythology that I was, in fact, following what Frank theorised regarding Quest Narratives? No, I did not. I read Frank well after I started these initiatives; well after I proclaimed my living symbol as the phoenix. Frank’s work is the perfect representation of Aristotle’s theoria, poiesis, and praxis.

Frank goes on to discuss how a patient gains agency through testimony with what he calls the “pedagogy of suffering,” meaning that the ill-individual can teach others about life through testimony about their illness (Frank 1995:145). This is what all of the subjects in My Truth: Women Speak Cancer confirmed both during and after their interviews. Teri was wary about talking to me because she did not want to share the part of her story where she acted against social and cultural expectations, leaving her family 54 for another man. When this truth emerged during our interview, Teri hesitated, indicating her discomfort. However, she still proceeded with the interview. It took courage to do this, but Teri ultimately felt that telling her story, even the part she had not intended to relay, had value. Stephanie felt the same, braving illness to meet me for a final in-person interview, risking her health to do it. She felt it was important that we be able to meet face-to-face and talk, to have someone bear witness to her story. Sue and her family embraced the project, not only entertaining interviews but inviting me into their lives. I attended family events and was allowed to visit Sue in the hospital when typically only family were allowed to do so. The reason why Sue and her family did this was to claim some agency over what was happening, to tell others what they knew, so good could come from their difficulties. Marina, Joan and Jacquie felt the same, as did Maxene,

Alanna, and Judy, as well as Judy’s husband, Mark, who completed the interviews with me after Judy’s death. Mark felt that the act of telling Judy’s story helped him to deal with the situation in a way he had not been able to before. He felt more like he owned the story, and knew that Judy wanted others to learn from hers. My aunt, Ivy, had me write down as much as possible of her story in her last weeks. Why? She wanted to leave behind a legacy to others who followed, to those who did not understand, to those left behind. I, too, feel as though telling even a fraction of my experience in My Truth is a way to reclaim agency by turning this all into learning. Even this treatise on the theory behind pathogynography is part of the “pedagogy of suffering.”

Ultimately, Hawkins, Cousins, Couser, Sontag, Kleinman, and Frank have all contributed to the study of illness narrative, or pathography, and therefore influence all 55

those who follow, such as Linda C. Garro and Cheryl Mattingly in their collection,

Narrative and the Cultural Construction of Illness and Healing.

2.6 Linda C. Garro and Cheryl Mattingly

“The next three-and-a-half years were, for me, a tragic example of the way an aggressive tumour can destroy a human being.” Anne P. Hellman (2005:9). “Narrative and Illness: The Death of a Doctor’s Friend”. Medical Journal of Australia. Volume 182, Number 1.

In the edited volume, Narrative and the Cultural Construction of Illness and

Healing, Garro and Mattingly write and collect sociological criticism on pathography

inspired by attending Friday Seminars in medical anthropology at Harvard with Arthur

Kleinman (Garro and Mattingly 2000:ix). Much of their work rings of Kleinman’s ideas, but also has the advantage of being produced twelve years later, so may also expand on

Kleinman’s theories. Quoting Shore, Garro and Mattingly discuss how “narrative provides a way to approach the relationship between the individual and culture by attending to the ‘role of cultural forms in the creation of meaning’” (2000:25). This idea supports my definition of the ill female writing other female illness narratives as more than pathogynography but as meta-ethnogynography, observing the language, culture and community of women with cancer from within those very same walls. Garro and

Mattingly say that the ability to tell narratives is “culturally embedded,” (2000:25) invoking my definition of what occurred as I wrote about other women and their cancer experiences, placing strands of my own experience within their story, embedded autopathogynography. Continuing, Garro and Mattingly use the phrase “life disruptions” to categorize illness, a corollary to what many of the subjects in My Truth, including 56

myself, use to classify a cancer occurrence in our lives, an “interruption” (Garro and

Mattingly 2000:27). Becker is used again to show how narratives enable a narrator “to

reestablish a culture-specific sense of order and continuity in life after a disruption”

(2000:29).

In My Truth: Women Speak Cancer, all of the subjects felt that the telling of their

story helped them to “organise” the events surrounding their illness(es). In a life without

illness, or interruption (or disruption), there is no need to re-establish cultural norms.

Garro later calls the process of remembering to tell a story, or write a narrative, “reflexive and generative” (2000:73):

Relating preexisting explanatory frameworks to personal experience is also a generative process, involving the linking of remembered past to plausible interpretations within the framework of possibilities afforded by culture (Garro and Mattingly 2000:73).

This theory is what I used in the poiesis, then, the praxis of writing My Truth:

Women Speak Cancer. By using preexisting explanatory frameworks, like definitions of

the disease given by interviewed physicians, or statistics on the cancers from the

American Cancer Society or related associations, I was able to link the survivors’ stories,

as well as my own, to a cultural framework.

Mattingly discusses later how “life, unlike narrative, does not afford us the luxury of the retrospective glance,” calling to attention the difference between writing a fictional narrative and a life narrative (2000:185). There are often no ends to illness narrative, no

definitive way to state that life will go on, at least not with pathography involving cancer.

Cancer returns. This is apparent in all of the women interviewed. All worry about

the return, even those who have experienced recurrences already. Cancer treatments offer

immediate rather than long term results. Though some survivors can have stretches of 57

good health that may last decades between recurrences, there is simply no cure for the

disease. A cancer diagnosis does not mean you necessarily die in a month, a year or even five years. A cancer diagnosis means that you must fight for your life, periodically, and/or until you die.

Mattingly acknowledges this ironic lack of end in pathography, and I found it

particularly relevant for My Truth, as even those subjects who died, such as Stephanie

and Judy, still had no end to their story. Their lives ended, but their stories did not. Both

had families, husbands, children, friends, who kept their memories, and their stories, alive

and ever-changing. This was particularly of interest with Judy’s story, as she and I only

had several brief conversations before she became too ill to continue, then passed away.

Her husband agreed to continue the interviews several years after her death. Though Judy had died, her story remained, and changed with the time that had passed since her death, with her husband’s grief, with his perspective.

Unni Wikan continues this thread in her chapter on narrative perspective, stating

that though there is a definite and clear beginning to illness narrative, the end is never

clear (Garro and Mattingly 2000:215). Using Kermode (1966:37), Wikan shows how “the

need for an ending” is a gender issue rather than an issue of narrative structure (Garro and

Mattingly 2000:216). Kermode discusses a narrator as being in full control, repeatedly

referring to the narrator as male. Kermode states that the male narrator knows how and

when his story will end (1966:38). Wikan, using her own experience, disagrees with

Kermode’s assessment of the narrator, stating that she herself was not in full control of

even her own narrative, and I agree with Wikan. While I long to see the classic

Hollywood happy ending for each of the survivor’s in the book, I am not in control of 58

how the story ends for each interviewee. It would be dishonest of me to assume any ending.

Wikan states that Kermode feels that “the end is the central linking piece to which

all else is related” and with illness narrative, it is simply not the truth (Garro and

Mattingly 2000:216). This supports my use of new terms to describe female illness

narrative as pathogynography and meta-ethnogynography, as well as the terms for the occurring phenomena of entrenched narrative silence and embedded autopathogynography, also supported by Wikan: “I am not telling you numerous things—experiences, sensations, events…,” in reference to her own pathography regarding the loss of her eye (Garro and Mattingly 2000:220). Between her words in her

illness narrative, there are entrenched narrative silences about her experiences, sensations

and events surrounding her illness, that are not being told to the reader through direct

speech.

Wikan’s sentiments about the role of gender in ethnography and illness narratives

are discussed further in section three, examining pertinent postmodern feminist theory in

anthropology, ethnography, and disability studies, and how each directly influencedthe

research that lead to My Truth: Women Speak Cancer.

3. Postmodern and Feminist Influences

“Before any experience, before any individual deduction, even before those collective experiences that may be related only to social needs are inscribed in it, something organises this field, inscribes its initial lines of force.” Jacques Lacan, The Fundamental Concepts of Psycho-Analysis (1977:20)

In the following sections, I will show how postmodern and feminist theorists

directly influenced My Truth: Women Speak Cancer. The first section will focus on

Butler’s postmodern gender theories. The next section will review germane aspects of

Hutcheon’s work as related to narrative. I also examine the work of Wolf, Mascia-Less,

and Black with sections on anthropological influences in ethnography and postmodern feminist theory as it pertains to culture. Susan Wendell’s section deals with disability and illness and the cultural perceptions of both. Judy Long is the final section and discusses female life writing from a sociological perspective. Her work greatly influenced My Truth: Women Speak Cancer.

3.1 Judith Butler

Butler’s foundational work on the influences in postmodern society has

contributed greatly to our understanding of formative notions surrounding social politics.

Her provocative text, Undoing Gender, influenced me as a pathogynographer and meta- ethnogynographer while writing My Truth: Women Speak Cancer. 60

Butler first caught my eye with the notion that loss irreparably changes one’s life,

and that accepting this can be a reason to grieve:

One mourns when one accepts the fact that the loss one undergoes will be one that changes you, changes you possibly forever, and that mourning has to do with agreeing to undergo a transformation the full result of which you cannot know in advance (2004:18).

This one sentence perfectly encapsulates the moment when you have been diagnosed with cancer and agree to undergo treatments. You cry about the possibilities of the side-effects from the treatments. You cry about the possibility of death. You cry about the loss of time. You grieve for the nature of transformation beyond your control and, often, understanding. This is what Stephanie did as she learned at sixteen weeks pregnant that she had an aggressive form of breast cancer that required immediate treatment. This is what Sue felt as she anticipated her wedding while calculating her hair-loss rate before the event, trying to do decide if she had the energy and strength to purchase a wig. This is what Jacquie, Marina, Joan, Maxene, Judy, Ivy, Kathryn, and I thought as we each began our cancer journey. Butler goes on to proclaim that “the body has its invariably public dimension; constituted as a social phenomenon in the public sphere, my body is and is not mine” (2004:21). Once again, Butler speaks as if directly to me regarding the pathogynography of 12 women.

Telling an illness narrative to a single person is a private act. Sharing your

pathogynography with a pathogynographer makes your experience part of the public

gaze, bringing the ill-individual’s body into the “public dimension” where ownership is

now negotiable with the audience who reads the narrative. In a sense, this idea threatens

to undo my original intent with My Truth, to empower the subjects through telling their

own stories and by inviting mass-acknowledgement of their experiences. How is it 61

empowering to trade their narrative for ownership of their stories, their truths, their very

bodies? Butler answers this question with: “The body implies mortality, vulnerability,

agency; the skin and the flesh expose us to the gaze of others but also to touch and to

violence” (2004:21). Through our physical existence, our visible bodies, ownership has

already been delivered from our possession.

Telling the survivors’ stories is a chance for them to take back, to gain agency

over, their illness and their bodies. Butler is careful to note that embodiment may make

us vulnerable to others but it is also the condition that lends “physical support for our

lives” (Butler 2004:23). By sharing the stories of each woman, as well as my own, a

space is created to not only give up bodily ownership, but to also receive it.

Butler’s philosophy describes every aspect of the illness experience through

embodiment of that experience by narrative means, though Butler was referring to the

experience of just being a woman in her theory. This lent more support to my own attempt at critically differentiating pathography from pathogynography, though I was reminded of a phrase as I contemplated the dangers of creating this difference, “Different is not deficient.” Culturally, women’s experiences do differ from those of men, and so their positionality is necessarily different. It is difficult to not fall to generalisations when discussing gender positionality, however, boys and girls are treated differently, and not necessarily because of their differences. For instance, commercials for dolls are geared toward girls, using pretty pastel colors and showing other girls sitting calmly playing with the dolls while commercials for toy guns show boys shooting each other and being mischievous, using outdoor settings 62

Butler (2004:53) notes that people are regulated by gender, which she then

cautions can become bound up with the process of “normalisation” (Butler 2004:55). To this end, My Truth: Women Speak Cancer must be understood to represent only those 12 individuals in the text, and no others. While writing a pathogynography always creates

the opportunity for entrenched narrative silence, embedded autopathogynography, and

the classification of meta-ethnogynography, such literary structures and critical process

will not always be used in all pathogynography written by women. Part of my wish in

writing My Truth is to suggest that women with cancer are not like Debra Winger’s

character in the film, Terms of Endearment; that women fight hard to survive and thrive, despite the worst of circumstances.

Butler continues to theorise gender by using the idea of narrative as a reference

point “that interrogates the limits conceivably human” (2004:64). I also strove to interrogate the conceivably human limitations in My Truth. Would you choose your child’s life over your own, like Stephanie? Would you endure the pain, suffering and horror of treatments just to extend your life long enough to have and nurture a child, even if it meant that you would die and no longer be there for your other children? Would you leave your home, your spouse, your children, like Teri? Would you ignore your spouse to focus solely on your children, like Joan? Would you choose to risk life and limb by undergoing a dangerous surgery that does not guarantee your long-term survival, like

Marina, and like me? Would you mutilate your body in hopes of salvation, like Judy and

Sue? These are the challenges interrogating the conceivably human limits in My Truth:

Women Speak Cancer. Theoria has no place in the cancer world, and neither does poiesis. 63

You go straight to praxis, and if you are lucky, you can go backwards and think about the

theory and process after the action takes places.

Butler invokes Foucault, saying that through communication a person can

“transform pure knowledge and simple consciousness in a real way of living” (Foucault,

1980:167; as quoted in Butler 2004:162). The idea of transforming pure knowledge lends authenticity to the efforts of My Truth: Women Speak Cancer. Did I know about Frank’s

automythology as I summoned my personal symbol, the phoenix, in 2003? Had I read

Norman Cousins’ ideas about self-healing and laughter when I plugged Adam Sandler comedies into my television so I could laugh instead of cry over my desperation and fear at permanent paralysis, and worse, death? Did Kathryn and Teri understand that they were each following the social formula observed by Kleinman when they rejected the expectations of family life for personal freedom? No, none of us knew that we were continuing patterns of behaviour already theorised by sociologists, psychoanalysts, anthropologists, and other theorists; we were merely taking our “pure knowledge” and transforming it into living when we did those things, the things that forged our pathographies, and, our lives.

3.2 Linda Hutcheon

As a postmodern text focusing on multiple truths and using perspectivism and

positionality in a reflexive and generative discourse, My Truth: Women Speak Cancer is

influenced by Hutcheon’s ideas. In The Politics of Postmodernism, Hutcheon says:

“Feminisms have also refocused attention on the politics of representation and

knowledge—and therefore also on power” (Hutcheon 2002:139). Hutcheon any artistic

medium, including visual arts, speech and narrative, deal with systems of meaning that

use historically and socially conditioned conventions, and therefore codes (2002:139).

She refers to semiotic mechanisms of gender positioning that produce body imaging,

such as films like Finding Neverland, a story about author J.M. Barrie as it relates to his

friendship with a family of children who lose their spirited, vivacious mother to disease

and then death. The film uses gender coding to represent the values of our culture where

women with illness are concerned. This notion of semiotic coding greatly influenced the

writing of My Truth: Women Speak Cancer. It was such gender positioning through

popular culture mediums that inspired me to write what actual women, not women as

imagined by male writers and artists, would do when faced with illness and death.

Hutcheon feels that feminism has enabled a “renegotiation of the separation between high art and the culture of everyday life,” such as popular culture mediums like the film, Finding Neverland (Hutcheon 2002:156). The context of narrative in history and the politics of normalisation through representation must be reconsidered (Hutcheon

2002:156). This is part of the framework for My Truth: Women Speak Cancer, an effort to reconsider the context of the female illness narrative, or pathogynography, outside of normalising representation in popular film and television. My efforts with the My Truth 65

collection mimic those of other feminists and the book will undoubtedly face the same

difficulties where “Postmodernism manipulates, but does not transform signification”

(Foster 1985:6; as quoted in Hutcheon 2002:163). First published in 1989, The Politics of

Postmodernism was reprinted in a second edition in 2002, allowing Hutcheon to “look

backwards” at her previous notions and expand accordingly. She leaves her audience

with the hopeful turn that though postmodernism attempts social change, the big change

is yet to come in the next socio-cultural theory post-postmodernism. My hope is that

twenty-first century pathogynography will play a small role toward helping the next stage

in our cultural evolution. Such an evolution will not acknowledge gender positioning, but

will put the poiesis into praxis. At this moment in time, women in most western societies

enjoy many social and political freedoms, and yet, in the United States, there has never

been a female President. Women also, on average, earn less than men for the same jobs.

It is socially acceptable, as evidenced through television, film, and other cultural mediums, to objectify women based on their physical appearance. The process of both recognising difference between genders yet not considering those differences deficiencies was a transnational phenomenon in the twentieth century. Now, the process needs to lead to definitive action, praxis, in the twenty-first century.

3.3 Margery Wolf

Wolf looks at feminism, postmodernism and ethnography in her text, A Thrice

Told Tale, alluding to the evolution of “waves” apparent in feminist theory. What was

interesting about Wolf’s text in relation to My Truth was her perspective as an 66

ethnographer. She writes of how postmodernism has influenced ethnography by pointing

to the importance of narrative in order to better explore the perspectives of the subjects

being studied within a particular community. She recites Mascia-Lees’ notion of action

“mediated by a unitary narrative voice” (1989:30; as quoted in Wolf 1992:54). The

purpose of both Wolf and Mascia-Lees is to expose the hierarchical nature of gender

positionality, typically highlighted in ethnography by male ethnographers, by making ethnography more accessible to wider audiences through the use of a narrative format.

This narrative format calls for a more reflective and reflexive strategy to ethnography;

both theoretical elements inspired my own writings in My Truth: Women Speak Cancer.

The idea of embedded autopathogynography, where the narrator puts strands of

herself in the context of another woman’s story in an effort to relate to the subject, is born

of readings from both Wolf and Mascia-Lees’ ethnographic theory. Using narrative

frameworks as the context for ethnography also inspired me to redefine the

pathogynography to the next level of meta-ethnogynography, as a narrator writing about

a community within that community, therefore, being able to more easily call upon

reflective and reflexive strategies in the praxis.

“The ‘telling of powerful truths’ is possible, but (is) perhaps confined to specific communities that share the rules” is a point made by Wolf (1992:131). Embedded autopathogynography is a way of conveying Wolf’s “telling of powerful truths’ because it is a way for the narrator to show that she is part of the specific community, sharing in the same rules as her subjects. Though other women without illness who write as pathogynographers may recognise the condition of women with illness, they cannot possibly have the same understanding as a woman who has shared in the cancer 67

experience. Embedded autopathogynography brings a depth to the pathogynographic text,

another reflexive layer to the meta-ethnogynography, that may not be necessary to

recognise the narrative itself, but is an imperative of the deeper understanding of the

subject.

3.4 Frances E. Mascia-Lees and Nancy Johnson Black

In Gender and Anthropology, I was able to source more theoria and poiesis that is consistent with the praxis of My Truth: Women Speak Cancer. Mascia-Lees and Black

discuss Foucault’s influence on “normalising” the discourse of medicine, and point out

that through such discourse, the “truth” is then centered in the language. This is a method

of control, creating “categories of identity to sustain power…and patterns of domination”

(Mascia-Lees and Black 2000:82). The idea of “categories of identity to sustain power” ties in directly with Hutcheon’s thoughts on high-art versus mass-art and the normalising semiotic gender representations apparent in both, though Mascia-Lees and Black are referring to the regulatory discourses in anthropology. For me, the concept of

“normalising” the discourse of medicine had other implications beyond (but also including) the anthropological aspects.

The discourse of medicine is what male authors like Kleinman and Frank, as well

as Cousins and Couser, have tried to not only influence but also change. Such discursive

evolution is also the subject in Susan Sontag’s work on illness. She rails against the

tendency in medical discourse to mythologise illness, using terms like “war” and “battle” 68 to describe encounters with all types of illness, and more specifically, cancer. While I do agree that such medical discourse has been harmful to patients (as well as to their doctors), and in particular, harmful to female patients, such “normalising” medical discourse is becoming increasingly less significant in the twenty-first century. The medical community, headed by doctors like Kleinman and Charon, is creating a new breed of doctor who understands the importance of the patient’s whole story, not just the story of her illness through a description of symptoms. We cannot naively believe that all doctors in the twenty-first century are on this reflexive path, however. As recently as

2002, I was seen by a radiation-oncologist in my local area who spoke into a tape recorder, calling me “subject A” and describing in great detail the deadly brain tumor in my head, still speaking into the little black box in his hand as if I were invisible. I refused to be treated by the doctor after expressing my discomfort with his manner. He acted as though I was crazy—how was it that I, the lowly patient, could possibly appoint myself in charge of my own treatment, in the face of his greatness? He said that he was an expert in his field and that I would not be able to find a better doctor. He was right. I didn’t find a better doctor. I researched the radiation treatment myself, a treatment I had already suffered through ten years earlier. I learned that the treatment he offered could actually cause brain tumors to grow, possibly explaining the recurrence that was not a recurrence of my original Astrocytoma, but an entirely different tumour, growing in the same area as the first; the same area where high-intensity radiation was focused into my brain for 32 treatments a decade before. I forewent his recommended course of treatment. He told me

I had two years before my tumour would return, at the most, if I did not have radiation. It is now year five since my diagnosis, and my scans are completely clear. 69

My long-standing experience as a patient in the medical community has made me

particularly sensitive to medical discourse and its many influences. What is represented

in My Truth is Foucault’s answer to “normalised discourse”: counter-discourse. My Truth

is an effort in counter-discourse, against normalising and regulatory codes, language, and

images. However my dissertation must use similar language and codes to convey the

message, as no other understandable language exists beyond what is available. This is

what Mascia-Lees and Black address next.

Using Dale Spender’s work, Mascia-Lees and Black show how male-oriented

language defines women by using “trivializing” terms like “baby” and “chick” and how

cross-gender communication in socio-linguistics stereotypes women as the “talkative” sex when, in fact, studies show otherwise (2000:89).

An understanding of the politics of gender in anthropology, ethnography and

sociolinguistics is central to a project like My Truth: Women Speak Cancer. The title

itself represents a nod to a counter-discourse. Women speak cancer as their own

language, indicating that such language is their personal truth. In order to uphold this

idea, I created new terms to support the notion of a counter-discourse through words like

pathogynography, meta-ethnogynography, embedded autopathogynography, entrenched

narrative silence, pathogynographer, and ethnogynographer.

Mascia-Lees and Black also question the terminology of culture as an indicator of

categorization (2000:99). This is certainly true with the cancer culture as there is a

specific culture that manifests when one is faced with a cancer experience. I cannot argue

against the anthropological desire to erase categorization. I do feel, however, that

categorization exists. Culture exists just as difference exists. No alternative naming will 70 erase the truth of the difference between a person with cancer experience and a person with no cancer experience. Though my son has lived with the notion of cancer his whole life, he is still not part of the cancer culture. He has no real understanding of the psychology needed to face such trials as chemotherapy or invasive surgery. He has no real understanding of what it means to know that death awaits in a very real, very immediate way. He has no concept of the intense grief at having a friend die of cancer, the feelings of guilt associated with survivorship, the helplessness of being an observer, and the shame at the relief that it was not you. Culture does not so much categorize as explain the difference in experience and understanding contributing to an individual’s perspective.

3.5 Susan Wendell

In, The Rejected Body: Feminist Philosophical Reflections on Disability, Wendell delves deeply into what is now popularly theorised (and categorized) as disability studies.

Wendell defines those with illness as part of the disabled group since “many people with illness are disabled by their illnesses”, but she is careful to note that those who are disabled may also be healthy (Wendell 1996:20-21). The idea of the healthy disabled is of importance to My Truth: Women Speak Cancer as not only am I a healthy disabled person, but I was also disabled through my illness. Each subject in My Truth experiences her own version of disability through illness. 71

While my disability through illness has remained permanent, most of the women

interviewed in My Truth have not have sustained disability from illness, though Kathryn

is an exception. Kathryn had her leg amputated as part of the course of treatment for her

Osteosarcoma, a childhood bone cancer, in 1974. Two years later, the cancer returned,

manifesting in her remaining leg. Doctors this time prescribed knee-replacement. Kathryn

walks remarkably well with only a cane and her prosthetic to aid her steps. Kathryn and I

are the minorities, however, as the majority of subjects, though suffering from limited

disability temporarily through their illness, did not have sustainable disability. Sue is an

example of this.

Sue’s right leg has severe neuropathy from the intensive chemotherapy she has

endured since her recurrence was diagnosed in 2005. She cannot walk without assistance,

partially due to weakness from the treatments. She had a similar experience during her

original diagnosis in 1998, when she lost her sense of balance from the chemotherapy and was also unable to walk without assistance.

Stephanie had a similar story (and it is interesting to note that both Sue and

Stephanie took the drug Taxol) where she began to have neuropathy in her feet and could

no longer walk or move in the same way. Teri also suffered from the same side-effect.

Jacquie was disabled for the duration of her treatment, when she was literally confined to

a single room in the hospital. Joan suffered a debilitating bout of depression that kept her

locked in her dark bedroom for three weeks when she first received her Melanoma diagnosis. Marina was temporarily disabled, too. She was unable to communicate after neurosurgery and was also unable to drive because of seizures. This limited her ability to walk as well. Alanna was disabled by her blood clots and Lupus, making everyday 72 activities that she had normally enjoyed almost impossible. Maxene, her bones weakened by her treatment, suffered broken bones and constant bouts of pneumonia and shingles; she can barely work on a consistent basis. As told by husband, Mark, Judy was unable to ride a bike or walk with balance during her treatments and the highlight of her summer after completion of chemotherapy, was finally being able to ride a bike again with her family.

Wendell goes on to discuss how social denial of such disability is cause for “a major source of loneliness, alienation, and despair” (1996:25). Kathryn and I both experience these notions associated with our disabilities. I am constantly put in situations in my workplace where I am excluded because I cannot ascend stairs. A faculty party was set on the second floor of an art gallery, with no elevator. The door to the faculty lounge is not handicapped-accessible. It takes great effort, strength and coordination to hold open the door while pushing my walker through without falling, then, to get out of the way of the door before it closes on me. Meetings are often held in spaces that require a descent or ascent of multiple steps to find seating. Kathryn discussed with me how she had trouble with dating because of her disability. She would talk to someone on the phone and things would seem to be going well until the individual met Kathryn and saw that she walked with a prosthetic. Part of Kathryn’s job involves frequent overseas travel. Though airports offer wheelchair service, Kathryn found that the service was not timely and she would often miss planes or connecting flights, and lose luggage.

Wendell discusses how race, age and gender can “alter the meaning of disability” for an individual. This is certainly true in my case, as well as in Kathryn’s case. We both have had experiences where our disability was questioned because we looked “healthy”; 73

we have also each experienced pandering to our disability due to our gender, as if,

because we are women we are not expected to be healthy or strong: the expectation of our

female gender makes our disability more natural. Wendell goes on to say that people with

disabilities tend to remind a community of the innate weakness in society and medicine

where medicine is thought to be powerful. Basically, the handicapped are

representational of social, scientific, medical, and technology failures (Wendell 1996:63).

Wendell also touches on how the experience of the disabled individual is left out of socio-cultural artifacts, like representation in film, literature and art, and therefore leaves those individuals who are newly disabled at a further disadvantage (Wendell

1996:65). By the very lack of socio-cultural artifacts, the disabled are categorized as an invisible class in spite of their high visibility through wheelchairs, walkers and canes.

Though the majority of the subjects in My Truth experienced temporary disability through illness, Wendell’s reflections on disabilities still had significance, especially for both Kathryn and I. We must live with our permanent disabilities everyday. In the

States, there is women’s climbing group who were featured in a March 2007 episode of

NBC’s Today show. One of the female climbers was a cancer survivor and said in her interview that she started to climb as a way to define herself outside of the cancer. For people like Kathryn and I, we are defined everyday by our cancer through our disability—there is no escape. However, no woman can escape being defined by her cancer; it is perhaps not as obvious with those who have not sustained a permanent disability, but the psychological effects of the disease will always be present, if not outwardly recognisable.

3.6 Judy Long

Long, a sociologist, contributed to my title through her use of Donna Stanton’s terminology, autogynography (a term used to denote women’s autobiography). Stanton’s

term, autogynography, also helped to shape my term, autopathogynography, in reference to embedded autopathogynography, a narrative technique in meta-ethnogynography, a phrase also influenced by Stanton’s “autogynography”.

Long calls autobiography “a discourse of institutionalized androcentrism”, going on to say that writing an autogynography means that a female author must contend with the existing male-oriented framework of the genre (1999:15). As I took up my “pen” to write My Truth I decided to write the text without outside influences. I wanted to write a text that would not cower in the shadow of others. I wanted to not be affected by the

“institutionalized androcentrism” that Long discusses. However, that may come later when I attempt to publish the text. Long was of course referring to an issue of genre.

By “regulatory” action that is “normalisation” or “institutionalized” definitions of

genre, a certain force is also exerted (Long 1999:15). “Framing an autobiography means

relinquishing the particularity of the life and merging with the genre” (Long 1999:16).

This was what I attempted to do through embedded autopathogynography. In order to

frame my autobiography, or at least the part that included my illness experiences, I chose to include the illness narratives of other women as a type of framework for not just my own story, but for each woman’s story as well. I also wanted to allow an audience into

the female cancer culture to disprove the socio-cultural notions put forth in mass-art

forms, like film, about women and illness. The typical language, perhaps influenced by

Long’s idea of “institutionalized andocentrism” was not enough to describe what I was 75

trying to do. While there are countless illness narratives, none to date have been

published like My Truth: Women Speak Cancer, with a single narrator discussing twelve

lives, the narrator’s story embedded in the others and coming to completion in the final

chapter, Rebecca’s Story. Pathogynography fits the need for writing women’s illness

narratives, but it is simply not a full enough term to encompass what I was attempting.

Autopathogynography would have been a useful term if I was only writing about my own

illness narrative, but for me, that idea alone lacked merit—why just write about myself

when my own experiences are made that much richer in relation to other women’s

experiences. My story then enriches their narratives in turn. It was here that the

connectivity between the disciplines of sociology, sociolinguistics, anthropology,

narratology, and creative writing theory, became apparent in relation to my dissertation.

Harvard psychologist, Carol Gilligan, developed a theory regarding the formation

of female ethics in her text, In a Different Voice. Gilligan called her theory care ethics,

stating that women form moral stances through emotional ties and relationships to avoid

isolation (Gilligan 1982: 43). Gilligan’s work was in direct response to Lawrence

Kohlberg’s work and it was both highly lauded and criticised. I agree with Gilligan that

my moral decisions are based on my relationships with the people around me. Deborah

Tannen (1990), a linguistics professor, discusses how women use language to make

connections and create relationships. Marjorie Default studied women’s efforts to create a

social dynamic surrounding the dinner ritual (Long 1999:51). Tillie Olson used mundane

activities like ironing to show how women involved emotion work in house work (Long

1999:51). I saw a pattern of importance based on connectivity with women in their relationships, language, communities, even their psychology. I realised I was not writing 76

within an existing framework; yes, my work was certainly influenced by existing

frameworks in multiple disciplines, but the current theory on genre was still insufficient

to describe what it was I was trying to do.

I named my work meta-ethnogynography, drawing from all the disciplines that

influenced my writing, to describe writing about myself, and my illness experiences, as

well as writing about other women from the larger cancer community who faced different

types of cancers. As I said, there are many illness narrative collections, but none use a

single narrator telling her own story in the context of others, and the others do not all share in the narrator’s particular diagnosis. Marina has a brain tumor like me. Joan has

Melanoma, like me. Otherwise, there are two women with breast cancer; three women with ovarian cancer; one woman with non-Hodgkins Lymphoma; one woman with

Osteosarcoma; one woman with thyroid cancer; and one woman whose cancer experience was not her own illness, but her husband’s, and how she, as the primary care taker, was affected by that cancer experience. I was not just writing female illness narrative, or my own illness narrative, but about a cultural community of survivors—from within that very community. It was not simple ethnography or autoethnography, or even ethnogynography. I chose the term meta-ethnogynography as a way to describe how I was writing about a cultural community that was beyond (meta) the “institutionalized,” or

“regulatory,” or “normative” understanding available in current theory and generic definitions.

Long goes on to talk about how honesty functions as a method of criticism in self- life writing. Using examples from Sophie Tolstoy, Marie Bashkirtseff and Florida Scott-

Maxwell, Long acknowledges that using honesty implies a “complex struggle” and she 77

argues that “pitiless honesty” may be “the standard by which autobiography should be judged” (Long 1999:30). In My Truth: Women Speak Cancer, I am exposed, naked,

stripped of my pretenses and made humble by my own words from which there is no

hiding place. I talk about how I could not reach out to Judy after she was diagnosed

again, and how I was unable to visit Jacquie in the hospital. I judge Teri for her lack of

honesty. I find myself to be weak in the face of my disease in light of the strength of the

women I write about. Stephanie’s courage was extraordinary: she had the strength and

will to die in her home (this is harder than anticipated; it was not easy for her to hear

people talk about her as if she were already dead, or to have her children witness her

deterioration). She had the strength to keep her feelings to herself, to be brave enough to

do all those things—even to make her own funeral arrangements; I know that I do not

have such courage, and because of the meta-ethnogynographic method I used, I had to be

brutally honest. Creative nonfiction, as the larger genre of illness narrative, called for

honesty above all else.

The other aspect of Long’s work that was useful to me was her statement “that

self-writing has survival value for women” and that it is “a vital adjunct to a daily life of

constraint and self-restraint” (Long 1999:31). This is of particular value to my writing as

many of the women through their illness were constrained and applied self-restraint in

their daily lives in consideration of their care takers. Long also says that “self-referential”

women’s writing reflects a type of isolation (1999:31). This is also pertinent to My Truth:

Women Speak Cancer.

I asked several of the survivors about their feelings of isolation in connection to

the cancer and their treatments. Stephanie in particular felt embarrassment early in her 78

diagnosis when she walked her children to the bus stop and the other mothers waiting

with their children would look at her, specifically at her wig. Stephanie felt that the wig

only accentuated her illness. She felt “lonely” because she found that people did not want

to talk to her. Sue also described something similar. She often felt that others would react

to her cancer by backing up, distancing themselves physically from her as if to avoid

catching a germ. My favorite instance of this comes from my own experience, where my

sister-in-law, an educated woman, asked me if the doctors ever found the virus that caused my cancer. As she spoke to me, she unwittingly lifted her hand in front of her mouth, and backed up several steps. Alanna also felt isolated during her husband’s illness and her subsequent health issues. All of their friends were healthy. She felt that people were more guarded around her and deliberately avoided talking about the disease though she was open to discussion, and in fact, desired it greatly. Marina felt that people treated her as if she were a child, speaking more loudly and more slowly, “I had a brain tumour not a lobotomy.” Kathryn still feels as though people look at her differently because she limps and uses a cane (because of her prosthetic leg).

The isolation occurs not just from having the disease and being constrained by

treatment but by having to stop doing “regular” life activities, like working or even the

mundane task of grocery shopping. People avoid talking to you, and because you are no

longer doing typical life activities, you are now outside of those communities and have

limited contact with others because of it. You are, however, part of a new community in

the hospital with doctors, nurses, and other patients, but it is not a community of joy, it is

a community of sickness, sadness and death. Long’s idea about self-referential writing

acting as a way to negate that loneliness has resonance in this context. Though none of 79

the women I interviewed are writers or even write in personal journals or diaries, the act

of telling their stories and the knowledge that those stories were being written, was a way

for them to gain agency over the constraint, self-restraint, loneliness, and isolation—a

sort of “revenge by pen” as Long puts it (1999:32).

Long even speaks to my confession in the pages of My Truth, to my longing for

acknowledgement of my suffering, even if it meant the acknowledgement of the

anonymous masses when she says, “self-writings express a yearning to be understood, a

hope often pinned to an anonymous stranger” (Long 1999:33). Long also discusses the

three foundational strategies for telling women’s lives: telling it slant, telling it straight

and telling it messy (1999:35). Telling it slant was my first attempt at writing part of my illness narrative. In My Truth I included the essay “SHaKeSPeaRe” which I first tried to publish as a fiction, though it was about my real experience with receiving an MRI scan.

Writing truth and calling it fiction is one way of telling it slant in women’s writing.

Telling it slant may also mean negating the self by “dampening” self-assertion. Long uses

Spacks’ work on public female figures such as Eleanor Roosevelt, Golda Meir, Emmeline

Pankhurst, and Dorothy Day to give examples of this (Long 1999:38). Other methods of telling it slant included women writing biographies of their husbands which were actually their own memoirs, as with Elizabeth Barrett Browning or Beatrice Webb (Long

1999:39). By telling my story through the other women, I acknowledge this long-standing method of women’s writing. Also, by telling Alanna’s story as a significant cancer experience, I am also gesturing to previous female memoir. But rather than make her husband the focus, I wanted to take Alanna out of the periphery and acknowledge her 80

authentic experience and show how that experience affected her life perhaps even more

traumatically than her husband’s.

Telling it messy is a way for women to express openly the messiness of their

lives. Long shows how there is no solitary hero in female autobiography because of the

“web of relationships” apparent in women’s lives (Long 1999:40). This was part of my

decision to focus the creative nonfiction on not just my own illness narrative, but the narrative of 11 other women. The importance of my story, of myself, relies heavily on others. I would not be an honest writer if I did not acknowledge this connectivity in my

narrative.

The third narrative strategy is telling it straight, where the writer moves women’s

experiences to the centre instead of keeping those experiences in the periphery (Long

1999:41). My Truth: Women Speak Cancer uses the methods of both telling it straight

and telling it messy. Women are at the center of the work. The messy part is the part that

deals with their illness. Sue’s original chapter, included at the end of this volume,

expresses this “messiness” more than the others (with the exception of my own chapter).

I was allowed to immerse myself in her life. I start her chapter with her recurrence in

2005 and reflect back on moments during our 2004 interviews, sometimes jumping

forward to 2006 to compare moments from past, present and future. The chapter is messy

because Sue’s life is messy. Though all the subjects experienced “messiness” I was only

privy to Sue’s mess, not just as a listener or a writer, but as an active participant which

changed the way I told the story because my position was no longer that of an outsider.

The immersion in Sue’s life and illness was difficult in many ways. I could not and

cannot separate myself from her story, or from her. At one point, I spent every other day 81

with Sue. I was with her before she went into surgery in April 2005. I was there when she

started radiation. I helped her with physical therapy. I saw the minutiae of Sue’s life, of

Sue’s illness. Sue’s chapter was messy because it represented what I saw in the most honest way I could write it at the time. However, as I began to work through my grief for

Sue, I was able to gain better perspective and rewrite her chapter to match the format used in the other chapters, though this process has taken years.

Long next seeks to “translate the darkness” of women’s writing by drawing on

Marguerite Duras’ comment that “no language exits for this telling; women subjects must

invent a discourse by ‘translating darkness’” (Long 1999:45). Sue’s chapter is again an

example of using what Long calls “dailiness” in women’s writing (1999:45). Because I

was allowed to be with Sue daily for an extended period of time, individual dialogues and conversations, descriptive moments of interaction between Sue and her family, her daughter returning from daycare—the dailiness of Sue’s life—were included in the chapter where the other chapters, even my own, lacks that sense of dailiness. This dailiness represents the “emotion-work” and “relationship work” that women use in their lives and in their writing (Long 1999:46).

Relationship work and emotion work are both part of the larger connectivity

included in women’s writing as thematic devices (Long 1999:53). This was apparent in

how the women with children in My Truth all framed their illness and their lives through

their relationships with their children. Kathryn and Ivy were the only two subjects

without children. Kathryn framed much of her narrative through the relationships (or lack

thereof) with family members and friends. Ivy’s story, because it is drawn from 1989,

shows less connectivity, although Ivy always spoke in terms of her siblings, specifically 82

her sister, who nursed her back to health with the magic of home-made chicken soup.

Long says that because of the complexities of connectivity, women’s writing always

proves to be “innovative in form” (1999:54). This supports the need for me to create new

vocabulary to describe the theoria, poiesis and praxis of My Truth: Women Speak Cancer.

Long also refers to how often women’s autobiography is “collective”, typically referring

to family relationships. Long (1999:55) uses Karen Fields as an example. My work

acknowledges this aspect of telling women’s lives by positioning myself within the

context of other women in “my” community, the cancer community, where none of us are minorities, where we are all “normal.”

Intersubjectivity is discussed by Long as an essential part of any ethnographer’s

goal. Because I am part of the existing female cancer community, I was able to

understand the “shared meanings” and communicate with my subjects (Long 1999:67).

Intersubjectivity provides the grounds for studying the truth as a means of the

relationship between the subject and the ethnographer; the “narrator (is) defined in terms

of intersubjectivity” (Long 1999:68). Long states that intersubjectivity provides not just a

context, but a language that may help communicate understanding of the cultural realities

within a certain community (Long 1999:68). In my case, intersubjectivity was enhanced

by the fact that the ethnographer was physically present, as with Sue. I was unable to

immerse myself in the lives of most of the other women in the same way and our

intersubjectivity was based on interviews that required us to physically meet and talk,

interact, exchange ideas, make connections. The centrality of intersubjectivity in my

work is part of the influence of my naming this writing meta-ethnogynography. 83

Long also defines objectivity and subjectivity, stating that, “Narratorial reflexivity

is an essential element of the new objectivity” (1999:72). Long defines this new

objectivity in how the subject is freed from control and the researcher, or ethnographer, is

revealed as narrator. Intersubjectivity is what is born from this process.

Intersubjectivity is also apparent in not just autogynography but biogynography as well. My Truth… uses biographical techniques in telling the women’s lives. Long uses

Wendy Mulford’s work as an example of a reflexive biography which allows the audience to witness her struggle with her subject, Valentine Ackland (Long 1999:105).

This type of reflexivity is apparent in every chapter of My Truth, but specifically in Teri’s chapter where I feel she is being dishonest and I clearly struggle with it, ultimately, coming to a better understanding of both Teri and myself. Such feminist biographical

techniques, like Mulford’s parity, put women in the center of the research, thereby erasing the invisibility of women’s lives (Long 1999:115). For My Truth, the invisibility lies in the social norms put forth in mass-art, such as films like Terms of Endearment,

Sleepless in Seattle and Finding Neverland. The ill women’s lives in these stories are peripheral, couched in the story of the men they are attached to, and often invisible, as is the case with Sleepless in Seattle. The work of My Truth: Women Speak Cancer is to bring such normative cultural practices into question by showing women as a central part of daily life and the reality of how women deal with illness and death.

Long continues by discussing Mary Belenky and how affinity and identification

between subject and narrator are tools, allowing the narrator to insert herself into the

framework of the narrative without denying her subject’s story (Long 1999:120-121).

Empathy becomes a method of research, and I employed this heavily as a participant in 84 the cancer community that the women interviewed were also all a part of. As interviewer of the subjects, I needed to call upon my own knowledge of how the subjects felt—their joys, their fears and their sorrows—to formulate questions and develop appropriate reactions. Because I identified with the subjects and their stories, we developed a mutual affinity that encouraged the praxis of empathy during interviews. I was surprised to find that this went both ways. Often, a subject would practice empathy with respect to me, asking me questions. This only increased our intimacy and the reflexive nature of the work, allowing for richer, deeper narratives.

Long examines Bell Gale Chevigny whose work includes dailiness, or everyday images (Long 1999:123). Long describes an “avowal of women’s experience” as a new narrative methodology: “Taking up the pen signifies dominance” (Long 1999:43). My

Truth: Women Speak Cancer is not an effort towards dominance, but towards interconnective socio-cultural understanding. Long’s work was invaluable in helping to shape the theory behind My Truth: Women Speak Cancer in the name, the nature, and the final knowledge in the form of the manuscript itself.

4. Influential Journal Articles and Essays

“I listen not only for the content of (his) narrative but for its form—its temporal course, its images, its associated subplots, its silences….” Rita Charon ‘The Writing Cure’. Melanie Thernstrom. New York Times Magazine. 18 April 2004

The next sections review relevant, current articles relating to pathogynography or

illness narrative. Pertinent American and Australian medical journals, journals on health,

sociology, and ethnography have been surveyed. Pathogynography and illness narrative are transnational genres that cross disciplinary borders. A transnational examination of illness narrative point to both differences and common characteristics in the writing of illness narrative, such as embedded autopathogynography, entrenched narrative silence, and aspects of meta-ethnogynography.

The following sections show not only the importance of illness narrative in

multiple disciplines, but the growing trend to study illness narrative as a theoretical

means of understanding both the process and praxis of illness in a transnational

framework.

4.1 Journal of Contemporary Ethnography

In, Risk, Reflexivity and an Elusory Body: Transformations in Studying Illness,

Elizabeth E. Wheatley, a sociology professor at Smith College, discusses how her work with patients experiencing heart disease took a reflexive turn as she herself began to experience illness. Wheatley is able to recognise the vulnerability of her subjects and their suffering through her own (2005:68). Wheatley invokes Radley’s theory of the 86

“elusory body” being a “de-realised” subject in ethnography, being marginalized by

social-constructs (2005:69). Wheatley discovers that before her own illness, her

theoretical agenda and perspective as a healthy individual rendered reflexivity nearly

impossible. She thought she was being reflexive, but it was not until she herself became

part of the community she was researching that she truly understood reflexivity

(2005:71).

I found Wheatley’s treatise on her self-discovery pertinent to My Truth simply

because it supports my position that my meta-ethnogynography through my positioning

within the cancer community performs a very specific kind of reflexive work. Reflexive

study is attained through intersubjectivity. The ethnographer needs to possess connectivity to the subjects and their world. Wheatley’s article brought my theoria into the light of poiesis and praxis, beyond my own recognition. Wheatley, an experienced ethnographer, determined what I was attempting to prove. Outside of the illness community, she did not even realise the inherent weakness of her reflexive research.

Once within the community she was observing, Wheatley was able to see the limited nature of reflexivity without direct connectivity to the subject’s illness-related experience.

4.2 Journal of the American Medical Association

Rita Charon, founder of the narrative medicine movement in medical schools and professor at the College of Physicians and Surgeons at Columbia, writes about the necessity of reflexivity, reflection and empathy in building professional trust with ill patients in her article, “Narrative Medicine: A Model for Empathy, Reflection, Profession and Trust” (Charon 2001;1897-1902). Charon informs her theory with biopsychosocial medicine and patient-centered medicine. Charon makes broad use of intersubjectivity and parity to develop a better understanding between doctor and patient, an understanding which extends beyond the patient’s symptoms and disease to the patient’s life. Narrative medicine has been termed “nourishing” by Charon, who sees in its methodology a direct link between a patient’s physical being and psychological being (2001:1897). This supports and informs much of my work in My Truth: Women Speak Cancer as I explore the connection of the cancer couched in the circumstances of the subject’s life. As with

Wheatley, Charon’s recognition of the import and benefits of illness narrative supports my theory on the significance of illness narrative for not just the patient, but for the doctor as well.

Charon feels that practicing narrative medicine allows a physician to not only grasp what the patient is going through but it also functions as a methodology of empathy in honoring the patient by acknowledging their narrative (2001:1897). Therefore, My

Truth: Women Speak Cancer is a contribution to narrative medicine as well. The text may be used in medical school classrooms, like those of Columbia, where future physicians may learn about reflection, reflexivity, intersubjectivity, and empathy through the stories of the 12 women and their illness experiences with cancer. This would allow for what 88

Charon terms “reflective practitioners” who can interpret the language of the patient’s

narrative through their own emotional responses, their empathy (2001:1899). Charon

feels that without narrative understanding of the patient, treatment costs are increased as a

correct diagnosis may be missed, leading to ineffective treatment of the patient

(2001:1899). Charon recommends physicians turn to the study of literature, specifically

illness narrative, to learn how to be reflective in “their personal understanding of illness”

(2001:1899).

Charon states: “Narrative medicine suggests that many dimensions of medical

research, teaching and practice are imbued with narrative considerations and can be made

more effective with narrative competence” (Charon 2001:1900). Rita Charon makes the

connection between ethnography and illness narrative, saying that narrative helps to bridge the divide between physician and patient, providing “continued fidelity to medicine’s ideal” (2001:1901).

Charon’s article, though published in 2001, is an indicator, like Kleinman’s early efforts with his text, that illness narrative has relevance and significance beyond the disciplines of sociology, linguistics, psychology, narrative, autobiography, biography,

ethnography, and anthropology. Illness narrative is the connective tissue that helps both physician and patient engage in meaningful discourse about disease leading to more effective medicine, and more effective treatment, both physical and psychological, for the patient.

4.3 International Journal of Health Sociology

Catherine Garrett, professor of sociology at the University of Western Sydney,

discusses how illness narrative functions as a source of hope in patients with chronic

illness in her article “Sources of Hope in Chronic Illness” (Garrett 2001). Garrett offers

hope that narrative provides healing in the absence of a cure, supporting Charon’s notions

of narrative medicine and my own theories regarding illness narrative in My Truth:

Women Speak Cancer. Again, Garrett’s, Wheatley’s and Charon’s professional

recognitions of the importance of illness narrative in their fields supports the relevance of

my project. Illness narrative functions beyond its “temporal course,” to quote Charon, as

a method of intersubjectivity, with a reflective and reflexive discourse that benefits narrator, subject, sociologist, anthropologist, scholar, theoretician, and physician.

Garrett also uses Frank to show how illness narrative may be used as a framework

for understanding representations of suffering (2001:2). Illness narrative can show both

the subject and the reader how to live despite difficult situations. The benefits of illness

narrative reach beyond the page to the larger audience as well as to the larger society. As

I consider Garrett’s message, I am exhilarated by the thought of the contribution of My

Truth: Women Speak Cancer, a meaningful text in multiple disciplines for multiple

audiences.

4.4 Medical Journal of Australia

Anne P. Hellman, a general practitioner in Beecroft, New South Wales shows in

her essay, “Narrative and Illness: The Death of a Doctor’s Friend”, Hellman (2005) yet

another benefit of illness narrative as a therapeutic coping mechanism for not just the

patient, but for the physician. Hellman begins by introducing “Christie” her patient, and her friend, who died after a long and difficult battle with cancer.

Hellman uses intersubjectivity with a reflective, reflexive, empathic stance as she

unfolds the events surrounding her own life as well as her friend’s death. “I believe

narrative can also help professionals reclaim their caring role in the care of suffering

patients” (Hellman 2005:11). Illness narrative empowers both the reader and the writer.

Hellman’s work reinforces my theory about illness narrative as disclosed in this text in

sections I through III.

Again, Hellman, like Charon, Garrett and Wheatley, recognises the importance of

illness narrative to her work, making space for My Truth: Women Speak Cancer as an

imperative text in the medical community.

5. Conclusion

Thomas Couser states: “Deliberation on the ethics of life writing entails weighing

competing values: the desire to tell one’s story and the need to protect others, the

obligation to truth and the obligation to trust” (Couser, 2004:198). Illness narrative gains

its effect and legitimacy from the honesty of the narrator. Through the textual features of

reflexivity, reflection and empathy the narrative itself can be a methodological tool for

living, healing, and learning.

Through the three-year process of researching, interviewing women and writing

My Truth: Women Speak Cancer, I was able to theorise the process and praxis of writing

a female illness narrative from within the illness community which I called meta-

ethnogynography, drawing on sociological, anthropological, and feminist discourse.

Using feminist and narrative theories, and borrowing from Stanton’s concept of

autogynography in particular, I termed female illness narrative pathogynography. I also

identified a pathogynographic narrative structures which I have described as embedded autopathogynography, and entrenched narrative silence, derived from the disciplines of

narratology and sociolinguistics.

Brazilian author, Paulo Coelho wrote this quote in his novel, The Alchemist, “And

when you want something, all the universe conspires in helping you to achieve it”

(Coelho 1993:22). This completed dissertation represents years of research and writing,

but also represents years of support for that research and writing from the people at the

University of New South Wales, particularly Anne Brewster and Suzanne Eggins, my

supervisors. It seemed to me at times, like in Coelho’s quote, that the universe was

conspiring to help me achieve this, the narrative of pathogynography. And I am grateful. 92

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