Preface
Chuck’s Journey: A Caregiver’s Love Story
While Chuck and I were officially married in 2013, we considered ourselves married from the start of our relationship which began in April 1993. This book is a compilation of frequent entries in an on-line journal I started when my husband Chuck developed weird symptoms in June 2020 that turned out to be caused by pancreatic cancer. The journal describes the surprise, heartache, and efforts to deal with the diagnosis, treatment, and care during Chuck’s last six months of life, until his death in January 2021. The journal entries are from my first-person perspective. The anxiety, anger, fear, but most of all – the love – is undeniable. As my sister said, “your journal shows a love story like no other.” True… Chuck and I lived a life of love, commitment, and respect for almost 28 years. I had always considered myself a “Caregiver,” as I looked after elderly family members during the winters of their lives. But nothing prepared me for the new level of caregiving demanded of me by the circumstances throughout my husband Chuck’s cancer journey. While caring for someone with pancreatic cancer is hard, trying to provide care during the Covid- 19 pandemic, with the “stay-at-home” orders, “no visitor” policies preventing a “Covid-19 negative” Caregiver from being with a confused and bewildered patient in a hospital or treatment facility, politicization of common-sense health precautions, and concern about exposure especially when chemotherapy drives down blood counts and compromises natural immunity, was extraordinarily difficult. I wrote this book to memorialize the care, commitment, and love that Chuck and I had for one another. It provides a glimpse into our long and loving relationship, and gives insights into Chuck, who many people did not know. This book also describes how, in every way, every day, we lived our marriage vows, especially, “to love, honor, and cherish in sickness and in health, until death do we part.”
- Rocky Lopes, January, 2021 - As edited by Laura Landi, July, 2021
©2021, Rocky Lopes, Silver Spring, Maryland. All rights reserved.
Preface - i -
Contents Preface...... i Chuck’s Journey: A Caregiver’s Love Story ...... i Contents ...... ii Chapter 1 Exploring The Unknown ...... 1 Chuck’s Initial Illness (Tuesday, June 30, 2020) ...... 1 Covid Catch-22 (Wednesday, July 1, 2020) ...... 1 Covid-19 Testing--Quick and Efficient (Friday, July 3, 2020) ...... 2 Waiting Worried (Saturday, July 4, 2020) ...... 3 Holy Crap! (Sunday, July 5, 2020) ...... 3 False Positive, Confirmed (Wednesday, July 8, 2020) ...... 3 A Fortuitous Benefit of Same-Sex Marriage (Monday, July 13, 2020) ...... 4 Procedure Day (Tuesday, July 14, 2020) ...... 4 Waiting Was Hard (Wednesday, July 15, 2020) ...... 5 Why I Am Not Calling, But Advocating (Friday, July 17, 2020) ...... 6 No News, More Waiting (Saturday, July 18, 2020) ...... 7 Strength from Faith and Optimism (Sunday, July 19, 2020) ...... 9 Chapter 2 Diagnosis and Surgical Plan ...... 12 With Urgency (Thursday, July 23, 2020)...... 12 One Month WE Will (Saturday, July 25, 2020) ...... 13 Plans Change (Monday, July 27, 2020) ...... 14 Stress (Wednesday, July 29, 2020) ...... 15 More of the Unknown (Friday, July 31, 2020) ...... 15 Throwing Things Away (Saturday, August 1, 2020) ...... 16 Surgery Plan (Monday, August 3, 2020) ...... 17 Reorganizing, Sigh (Thursday, August 6, 2020) ...... 18 Rough Nights (Friday, August 7, 2020) ...... 18 We Danced (Saturday, August 8, 2020) ...... 19 Key Word: Flexibility (Sunday, August 9, 2020) ...... 20 Busy Week (Monday, August 10, 2020) ...... 21 Update (Thursday, August 13, 2020) ...... 21 Life Planning (Saturday, August 15, 2020) ...... 23 Unable To… (Sunday, August 16, 2020) ...... 24 Crisis Averted (Monday, August 17, 2020) ...... 25 Flying With Eagles (Wednesday, August 19, 2020) ...... 26 Legalities (Thursday, August 20, 2020) ...... 28 The "Thing" (Friday, August 21, 2020) ...... 28
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Intense Time (Sunday, August 23, 2020) ...... 29 Chapter 3 Surgery and Recovery ...... 30 Parting Courage (Monday, August 24, 2020) ...... 30 From the ICU (Tuesday morning, August 25, 2020) ...... 31 Transition (Tuesday afternoon, August 25, 2020) ...... 33 Day 3 (Wednesday, August 26, 2020) ...... 33 Day 4, uggghhh (Thursday, August 27, 2020) ...... 35 Friday Morning (Friday, August 28, 2020) ...... 35 Better Day (Friday, August 28, 2020) ...... 36 Now Waiting (Saturday, August 29, 2020) ...... 36 Pazienza, Paciencia, Răbdare, Patientia, υπομονή (Sunday, August 30, 2020) ...... 37 Discharge Day -- Not? (Monday, August 31, 2020) ...... 38 Spoke Too Soon (Monday afternoon, August 31, 2020) ...... 38 Complication (Tuesday, September 1, 2020) ...... 39 Chapter 4 Recovery from Surgery ...... 41 Home (Wednesday, September 2, 2020) ...... 41 Adjusting (Thursday, September 3, 2020) ...... 41 Positive Priorities (Friday, September 4, 2020) ...... 42 No Battle Rhythm (Saturday, September 5, 2020) ...... 43 Toil(ets) (Sunday, September 6, 2020) ...... 44 Challenged (Monday, September 7, 2020)...... 44 Tuesday—Loving Harder (Tuesday, September 8, 2020) ...... 45 One Thing (Wednesday, September 9, 2020) ...... 46 Today's One Thing (Thursday, September 10, 2020) ...... 47 September 11 (Friday, September 11, 2020) ...... 47 Love One Day At A Time (Saturday, September 12, 2020) ...... 48 A Day of Stark Contrasts (Sunday, September 13, 2020) ...... 49 Another Day To Love (Monday, September 14, 2020) ...... 50 A Big Thing (Wednesday, September 16, 2020) ...... 50 Causin' Commotion In My Soul (Thursday, September 17, 2020) ...... 51 Recovery Continues, Let's Make It a Lovely Day (Friday, September 18, 2020) ...... 52 An Outing (Saturday, September 19, 2020) ...... 53 My Own Health (Tuesday, September 22, 2020) ...... 53 Chapter 5 Oncology and Preparing for Chemotherapy ...... 54 Next Steps (Wednesday, September 23, 2020) ...... 54 Blood Clots (Friday, September 25, 2020) ...... 55 Ups and Downs (Sunday, September 27, 2020) ...... 56
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25,000 Steps (Tuesday, September 29, 2020) ...... 56 Five Plans (Thursday, October 1, 2020) ...... 57 Poor Recovery (Saturday, October 3, 2020) ...... 58 His Heart (Monday, October 5, 2020) ...... 59 Busy October (Wednesday, October 7, 2020) ...... 60 The Harley (Thursday, October 8, 2020) ...... 61 Diet Trials (Sunday, October 11, 2020) ...... 62 Complications Compounding (Monday, October 12, 2020)...... 63 Another Crazy-Love Earworm (Wednesday, October 14, 2020) ...... 64 Next Steps (Wednesday, October 14, 2020) ...... 64 My Support Group (Thursday, October 15, 2020) ...... 65 Recovery (Saturday, October 17, 2020) ...... 66 Autumn Outing (Sunday, October 18, 2020) ...... 67 Buying Time (Tuesday, October 20, 2020) ...... 68 How to Help (Wednesday, October 21, 2020) ...... 69 Finding Joy Today (Thursday, October 22, 2020) ...... 70 Joyful Memory Sharing (Friday, October 23, 2020) ...... 71 The Joy of Cooking (Saturday, October 24, 2020) ...... 72 The Regimen (Monday, October 26, 2020) ...... 73 Warmth and Affection (Thursday, October 29, 2020)...... 74 More Prep Steps Completed (Friday, October 30, 2020) ...... 74 Oddly Emotional (Sunday, November 1, 2020) ...... 75 Load Lightened (Monday, November 2, 2020) ...... 76 Cousin Itt (Tuesday, November 3, 2020) ...... 77 Thoughtfulness (Wednesday, November 4, 2020) ...... 78 First Treatment (Thursday, November 5, 2020) ...... 78 Quiet (Friday, November 6, 2020) ...... 80 Day 4 Downturn (Saturday, November 7, 2020) ...... 80 Arrow in the Quiver (Sunday, November 8, 2020) ...... 81 PDAC (Sunday, November 8, 2020) ...... 82 Intuition (Monday, November 9, 2020) ...... 82 Two Hobblers (Tuesday, November 10, 2020) ...... 83 Walking Him (Wednesday, November 11, 2020) ...... 84 UnBirthday (Thursday, November 12, 2020) ...... 85 Can’t Help (Friday, November 13, 2020) ...... 86 Applying New Knowledge (Saturday, November 14, 2020) ...... 87 Downturn (Sunday, November 15, 2020) ...... 88
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Withdrawal from Chemo? (Sunday evening, November 15, 2020) ...... 88 Yeah, I Know (Monday, November 16, 2020) ...... 89 Reset (Tuesday, November 17, 2020) ...... 90 Being His Rope (Wednesday, November 18, 2020)...... 91 Changes (Wednesday evening, November 18, 2020) ...... 92 Quiet (Friday, November 20, 2020) ...... 92 Updates (Sunday, November 20, 2020) ...... 93 Another Adventure Awaits (Tuesday, November 24, 2020) ...... 94 Waiting (Wednesday, November 25, 2020) ...... 95 So Far, So Good (After infusion, November 25, 2020) ...... 95 Thankful & Grateful (Thanksgiving, November 26, 2020) ...... 96 Chapter 6 Chemo Intolerance and Hospitalizations ...... 98 Hospitalized (Friday, November 27, 2020) ...... 98 Infection (Saturday, November 28, 2020) ...... 98 Distracted Klutz (Sunday, November 29, 2020) ...... 99 Discharge (Sunday evening, November 29, 2020) ...... 100 Patience for my Patient (Monday, November 30, 2020) ...... 100 When He Cries (Tuesday, December 1, 2020) ...... 101 Hate Arguing (Wednesday, December 2, 2020) ...... 120 Apologies (Wednesday evening, December 2, 2020) ...... 120 Bah Humbug (Friday, December 4, 2020) ...... 121 Chilled (Saturday, December 5, 2020) ...... 121 Fever Broke (Sunday, December 6, 2020) ...... 122 Next... (Tuesday, December 8, 2020) ...... 122 Hospitalized Again (Friday, December 11, 2020) ...... 123 Hospital Update (Saturday, December 12, 2020)...... 124 Incomplete Information (Sunday, December 13, 2020) ...... 125 Coming Home (Monday, December 14, 2020) ...... 126 THNGVBD (Wednesday, December 16, 2020) ...... 127 Mucositis (Thursday, December 17, 2020) ...... 128 Expected, But Sad (Friday, December 18, 2020) ...... 129 SBTN (Friday evening, December 18, 2020) ...... 129 No Break (Tuesday, December 22, 2020) ...... 130 My Christmas Gift -- My Husband (Christmas, Friday, December 25, 2020) ...... 132 Decisions (Friday evening, December 25, 2020) ...... 132 Give-Up Tug-o-War (Saturday, December 26, 2020) ...... 133 To the Hospital (Sunday, December 27, 2020) ...... 134
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Averted Catastrophe (Monday, December 28, 2020) ...... 135 Kidney Damage (Tuesday, December 29, 2020)...... 136 I Am The One Who Is Fortunate (Wednesday, December 30, 2020) ...... 137 Medical Consent (Wednesday afternoon, December 30, 2020) ...... 138 Updates (Wednesday evening, December 30, 2020) ...... 139 What To Do (Thursday, December 31, 2020) ...... 140 Chapter 7 Hospice, Saying Goodbye ...... 142 The Hardest Decision of My Life (Thursday afternoon, December 31, 2020) ...... 142 Hospice (Thursday evening, December 31, 2020) ...... 144 Peaceful Placement (Friday, January 1, 2021) ...... 145 Return to Husbandhood (Saturday, January 2, 2021) ...... 145 Two Words (Sunday, January 3, 2021) ...... 147 Holding, Holding (Monday, January 4, 2021) ...... 149 Our Last Night (Tuesday, January 5, 2021) ...... 150 Chapter 8 Obituary ...... 151 Chuck Angelucci ...... 151 Chapter 9 Memories about “My Chuck” ...... 153 Chuck Thinks Ahead (Postscript addition, May 18, 2021) ...... 153 Chuck’s Sense of Humor (December 9, 2020) ...... 154 Chuck Was Always There for Me (December 11, 2020) ...... 155 Passion for Trams (December 20, 2020) ...... 156 Chuck’s Love of All Things Ziggy (December 24, 2020) ...... 158 Chapter 10 Synopsis of Symptoms, Treatment, and Care ...... 160 Chapter 11: Afterword ...... 163 Five Months (Saturday, June 5, 2021) ...... 163
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Chapter 1 Exploring The Unknown
Chuck’s Initial Illness (Tuesday, June 30, 2020)
For about the last week, Chuck has been complaining of some mild symptoms: a rash and itching that at first seemed to be an allergy to strawberries... and lettuce... and berries... and ... and ... and ...
At first, I modified his diet as he asked, and anticipated the rash and itching would subside. However, the symptoms multiplied. A week on, he has been complaining of sudden weight loss of 8 pounds in the last seven days, mild abdominal pain, bloating, and dark (tea-colored) urine. Besides the sudden weight loss, what shocked both of us was that his stool became very light in color – the color of clay.
Unfortunately, Dr. Google has been consulted too much. Chuck isn't a hypochondriac, but the web can be very scary. He was interpreting his symptoms that something was wrong with the liver.
I worked through our health insurance plan to try to reach a hepatologist (liver specialist). After much difficulty, we reached the specialist's office, only to be told that the specialist would not even talk to us until Chuck saw a primary care physician (PCP).
Back to square one. We no longer have a PCP. The PCP we really liked went the "concierge medicine" route and charges a hefty fee just to belong to his practice. So we went back to our health insurance provider and found a practice that we have used before to select a new PCP. We scheduled a TeleMed visit with a new PCP yesterday (June 29).
As expected, the physician wanted to order lab tests, and issued the lab order. Due to the coronavirus pandemic, the lab is not accepting visits until July 6. I booked an appointment.
Today, Chuck was up before dawn, complaining about a very rough night of more pain and itching. He got a bit hyper about insisting on seeing a gastroenterology specialist. With calm determination, I arranged an appointment for an in- person visit with a specialist who Chuck has seen before. We are off to the doc later today. Send Chuck good thoughts.
Life is short: getting medical care during a pandemic is frightening, but necessary when you are sick!
Covid Catch-22 (Wednesday, July 1, 2020)
Yesterday, I took Chuck to see a gastroenterologist. Chuck has been complaining for a couple weeks now about progressively worsening symptoms of mild abdominal pain, bloating, itchy skin rash, dark urine, clay-colored stool, and dramatic weight-loss. All these symptoms are pointing to something wrong with internal organs.
We arrived for the appointment about 15 minutes early. We were told not to come into the office until the exact time of the appointment since the waiting room was closed. It was at least 98F out, and while it was cooler in our air-conditioned Jeep, it was still quite warm. We sat in the Jeep with the AC running to wait until the scheduled appointment time.
Waiting in the Jeep on a hot day was a mistake, and a big one. Since Covid restrictions prevented me from accompanying Chuck into the doctor’s office, Chuck went into the doctor's office alone. Chuck told me that the receptionist took his temperature. It was 99.7F. Woops. The doctor also took his temperature and got the same reading. Even though Chuck had no other symptoms of Covid-19, the elevated temperature was a huge problem. The doctor said he would not see Chuck until he got a test for Covid-19 and results were negative. He gave him an order for the test and told him to leave.
Since we arrived early and waited in the Jeep under the hot sun, and Chuck was on the sunny side of the vehicle, no wonder he had a temperature above normal! Chuck's reaction: can you spell L-I-V-I-D?
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The doctor mistakenly told Chuck to have me take him to a CVS pharmacy with drive-up service to get the Covid-19 test. We drove there and waited 45 minutes in a drive-thru pharmacy line. When we pulled up to the window, we were told that we had to have an appointment, and without one, no test. Furious, we headed for home.
Chuck took a shower while I contacted our county's health department to ask how to get a test for Covid-19 and schedule an appointment. A health department representative told me that the earliest available appointment for a Covid-19 test was for Thursday, July 2. She scheduled the appointment for Chuck, and one for me also.
What is making both of us angry is that it is possible that Chuck's low-grade temperature was due to whatever non-Covid illness he has, but no one will see him, evaluate his condition, or provide treatment, until he gets a negative test for Covid- 19. He could get much more ill in the time it takes to get a test and wait for results which could be as long as five days.
I explained to the health department rep that I really don't think either of us has Covid-19 because Chuck's symptoms, other than the low-grade fever, are inconsistent with Covid-19, and he has not been in a public setting since March 25. The only person who could have been exposed is me. I have no symptoms whatsoever. I have had two tests for Covid-19, and both were negative.
The health department representative was sympathetic but went on with her protocol script and told us to begin self- isolation. That caused Chuck to become terribly upset. He ranted for an hour. He is still quite grouchy, probably because he can't get restful sleep.
This Covid-conundrum is a real "Catch 22." Have a non-Covid illness but cannot see a doctor until a negative test result for Covid-19 is provided a week later.
Well, as least we had a TeleMed visit with a new GP on Monday. We will go through with getting lab tests for Chuck on Monday, July 6, as this doctor ordered, even if we do not have the results back yet for the Covid-19 test. I will take Chuck's temperature before we head out for the lab, and if he has a temperature above 99.4F – the threshold in the published Covid medical protocols – we won't go.
ARRRGGGHHHH! This is me, screaming.
Life is short: care for the one you love.
Covid-19 Testing – Quick and Efficient (Friday, July 3, 2020)
Maryland has done a good job with its Covid-19 testing availability, at least in recent weeks.
Since a doctor refused to see Chuck because he had a low-grade fever and insisted that Chuck get tested for Covid-19, and after the fiasco at the CVS due to wrong information from that doctor as described before, I called our county's Health Department and made testing appointments for both of us for Thursday morning, July 2.
We arrived 15 minutes early. A young Civil Air Patrol worker checked us in, then directed us into a testing line in this drive- through facility. We were asked to sign a release, then a HazMat-suited young lady swabbed the inside of our mouths at the gum line 10 times each side. We were in and out of the testing site in under 10 minutes.
The only thing we do not like is having to wait five days for the results, and the report may be delayed even longer due to the Independence Day holiday. Oh well, we sit and wait... and I worry, as Chuck's health is getting worse.
Life is short: caregiving is an opportunity to show those you love how you love them.
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Waiting Worried (Saturday, July 4, 2020)
Update... Chuck is yellow. Seriously – his entire body is jaundiced. Skin is yellow from head to toe.
The whole-body itching drives him crazy, and there is nothing we can use to treat it. His urine is dark, his stool is clay- colored – still the same as it has been for over a week now. He has lost 10 pounds in 8 days.
I sent a message to his new doctor with an update about his declining condition, requesting that if possible, she see him in person when I take him to the medical office for a sonogram scheduled for Tuesday morning. I think Chuck has a serious infection. Or worse, if you read what Dr. Google has to say. I can't dwell on this. I must remain strong and positive for Chuck. But I am really really really worried.
Life is short: continue to care for the one you love.
Holy Crap! (Sunday, July 5, 2020)
We received a phone call today from a Maryland Department of Health Contact Tracer with results of Chuck's Covid-19 test. The news was shocking: Chuck's reported result was positive. Holy moley!
We answered the contract tracer’s many questions, but we were left dumbfounded, with no answers for our own. How in the double-h hell could this have happened? Chuck has not been out of the house since March 25. Exceptions – riding with me to fill the gas tank in mid-April where Chuck never got out of our vehicle, and then to trying to see a doctor on June 30. It was unlikely Chuck was exposed in the doctor’s office due to the protective gear the receptionist and doctor were wearing, as well as Chuck was required to wear a mask and face shield too. The only way Chuck could have been exposed is through me.
This is truly puzzling. My outings near other people have been limited to grocery shopping. I always wear a face covering and go to the store at 6:00am when there are very few people there. And that has really been it! No company, no social gatherings, nothing.
The routine I go through when I get home with groceries is like response to a HazMat scene. Truly, all perishables are cleaned, I put my clothes in a laundry bag, then don a robe and jump into a hot, soapy shower. Every single time. I have gone out for other essential errands, but I "decon myself" as described each and every time.
I am waiting for my notification of my latest Covid-19 test results. If I am negative and Chuck is positive, then I am convinced that Chuck's test result is a false positive.
Our plans to get Chuck to a lab on Monday and to a doctor's office on Tuesday for a sonogram are canceled. We need to speak with his doctor to figure out next steps.
Life is short: don't lose your hair while scratching your head with distressing and exceptionally puzzling news.
False Positive, Confirmed (Wednesday, July 8, 2020)
After a lot of work, I finally got the results of my July 2 Covid-19 test, and as expected, my results were "not detected," which is typical non-speak for "I don't have it." Same results as I received twice before.
After a long talk with the Montgomery County Department of Health and Chuck's doctor, we are convinced that Chuck's Covid-19 test result is a false positive. He has not been out of the house and we have not had any visitors, so there is just no way he could have been exposed except through me, and I don't have it.
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However, in order to get Chuck back to being able to get lab tests and imaging to determine what is causing his current illness, Chuck had to get another Covid-19 test and have its results be "not detected." Working with the county Department of Health, we were referred to a location that offers the Covid-19 "Rapid Test," so we will have results in 3 hours. It was supposed to be 15 minutes. Chuck got that test today (Wednesday, July 8.)
RESULTS: NOT DETECTED! YAY! Chuck is now clear to proceed with labs and an ultrasound! Chuck is scheduled for imaging tomorrow and labs on Friday... so the "not detected" result is essential.
Life is short: caregiving requires patience and persistence. Love provides both.
A Fortuitous Benefit of Same-Sex Marriage (Monday, July 13, 2020)
My beloved husband Chuck is loath to speak with anyone on the telephone. Further, when it comes to complex discussions with doctors and others in the medical community, I am better at having that discussion because I know more of the jargon and questions to ask. Even in the situation where an appointment to see a doctor has to be made, I am the better person with whom to speak because I do the driving.
Through our ordeal with serious medical situations in the past and now, we have found a fortuitous benefit of same-sex marriage. When we have contact with these providers, I often initiate the call or take the call and just speak as if I am Chuck. I don't say that I am Chuck, but when a call comes in and I answer, they may ask, “Is this Charles?"
My response is, "Just a sec." Then I put the phone on hold, count to ten, then answer, "Hello?" Inevitably, the caller launches into whatever they were calling about. Usually, it is to relay information such as date and time of an appointment, or procedures to gain access to a facility, or something similar. In the cases where a real doctor calls to speak with Chuck to inquire about his health or relay important information such as a medical diagnosis, I then get Chuck on the phone and usually on speaker so I can be in the room with him and hear it at the same time.
This benefit of having a male voice works 99% of the time in these ongoing situations. As Chuck's #1 Health Advocate, he prefers I initiate or take these calls anyway.
Life is short: advocate for your spouse.
Procedure Day (Tuesday, July 14, 2020)
Yesterday, Chuck and I had our trial run to Sibley Hospital where Chuck has a procedure scheduled. He had to get a Covid- 19 test at this facility the day before his procedure so he would be cleared to have it done. It was his worst test yet – the original "swab the back of your brain" test that I had to have the first two times I had it. It is painful!
Today, Chuck is scheduled to get an Endoscopic Retrograde Cholangiopancreatography (ERCP) in the outpatient center at Sibley Hospital. I woke this morning at 3am because I was nervous and worried, but must be strong for my husband and always give him a warm smile on my “game-day face.”
Chuck is still in denial; he thinks today's procedure will "clear the blockage" and he will be relieved of the jaundice, itching, and dark urine. I would love to have his blissfully naive optimism.
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I am not speaking with anyone on the phone except siblings. Otherwise, I just cry and can't do that with Chuck within earshot.
Life is short: hold yourself together to be strong for your husband.
Waiting Was Hard (Wednesday, July 15, 2020)
I took Chuck to Sibley Hospital at 2:30 pm for the ERCP procedure scheduled at 3:45 pm yesterday. Due to restrictions imposed to reduce Covid-19 exposure, I had to drop him off, then drive to a parking lot and wait. I took books to read, but I could not concentrate. I tried to nap, but so much was on my mind, I couldn't. I tried listening to the radio, but it all was the same.
And it was hot.
Four hours later, my cell phone rang. It was a hospital worker saying that Chuck was just getting dressed and would be ready for pickup in five minutes. I drove to the pickup area, and a few minutes later, my beloved hobbled out on two wobbly legs. He was still recovering from anesthesia. I hopped out of the Jeep, ran to his side, gave him a gentle hug (fearing I would hurt him if I hugged him harder), and assisted him to get into the passenger side of our vehicle.
On the drive home, I asked Chuck what the doctor told him after the procedure was over. Chuck could not remember much. He seemed to still be recovering from anesthesia.
However, Chuck said that while in the Recovery Room that “someone” said he had a malignant tumor. Imagine him going into a hospital thinking he is simply having a blockage removed, then coming out having heard – or slightly remembering – that he had a malignant tumor! No wonder he could not remember anything else!
The most frustrating thing was that I could not be there with him to ask questions and take notes. Damned "no visitor" restrictions! Damned Covid-19 pandemic!
When we arrived home, Chuck thanked me for being there for him and for my help. Always, my love. That’s what I do.
He wanted to undress and put his clothes in the laundry. I helped him do that, then settle him into his favorite chair in the Family Room to rest.
I needed to go to the pharmacy before it closed to pick up a prescription for an antibiotic the doctor prescribed for him. After I arrived at the pharmacy and parked, I called my big sister. Almost as soon as she answered, I lost it. I wailed ... I must have frightened her a lot. I was brief, but relayed my fear and emotional concern. After the short call, I dried my tears, went into the pharmacy, picked up the prescription, and drove home.
When I arrived, Chuck was mildly hungry since he had to fast before the procedure. I made him Uncle Joe's chicken soup and some buttered pasta.
Then I got on the computer, and Chuck and I reviewed his electronic record from Johns Hopkins. The report from the doctor who did the ERCP was already in there. I read it aloud to Chuck. The report even included pictures... the tumor is large, ugly, and had a lot of blood vessels showing.
The report indicated that Chuck may have a rare form of cancer called "Ampullary Carcinoma." This is a cancer that forms in a body part called the ampulla of Vater. The ampulla of Vater is a small opening that enters the first portion of the small intestine, known as the duodenum. The ampulla of Vater is the spot where the pancreatic and bile ducts release their secretions into the intestines.
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The Johns Hopkins website indicates this cancer is first treated by a surgical procedure called the Whipple procedure (pancreaticoduodenectomy). This procedure involves the removal of the tumor in the affected portion of the ampulla of Vater and the surrounding areas. This includes the head of the pancreas, duodenum, gallbladder, part of the common bile duct, nearby lymph nodes, and sometimes part of the stomach.
We are waiting now for Chuck's primary care physician to call and advise next steps which seem to us that surgery will be required.
We have also begun planning for Chuck's future, our future, as limited as it may be. We hope that after recovery, and after being able to get a vaccine for Covid-19, that we can take one or maybe even two more trips and do it first class (or as Chuck likes to say, "shishky high-class") like there will be no tomorrow. He wants to go back to the Big Island of Hawaii and stay at a place right on the beach, so he can listen to the ocean. He also wants to fulfill a dream of seeing St. Johns Newfoundland. Help us, Lord, to give Chuck the strength and stamina to do this.
Why?
Life is, indeed, short.
Why I Am Not Calling, But Advocating (Friday, July 17, 2020)
I very sincerely appreciate that my family and very close friends have offered shoulders to lean on with a phone call to scream, cry, or talk. Yes, both of us are still in shock. A “suggestion” of the rare Ampullary Carcinoma is hard to accept or even think about.
As of now, talking to anyone on the phone is just too hard. I break up. I cry. I can't let Chuck hear me crying.
I just can't talk.
I tried... I spoke with a close friend in California yesterday on the phone. I was so choked up the first few minutes, I was not making much sense. My friend knows me well; she listened and gave me "space" to recover my composure. We talked for a while and I got a little better. But it was hard. Damn hard.
Also, Chuck is insisting that I not tell anyone about his situation. He can't hear me on the phone, especially when I cry. I must always remain strong for him, despite how I truly feel.
Because I love him so, I am spending more time with him talking, listening, or doing other things for distraction, like watching movies. What movies, you ask? As I told a close friend, I don't remember. I honestly don't; I have so much on my mind. However, this attention helps divert Chuck’s attention from his health issues, even momentarily. Hearing him laugh at a movie or become passionate about a conversation we have is helpful to both of us.
For my own distraction, I have become a wildly passionate civic activist again here in Montgomery County. I have spoken with elected officials and the Director of the largest Covid-19 testing lab in the county over issues that caused delay in getting exams and diagnosis for Chuck's cancer. There are a lot of complicated parts and pieces of this issue.
First – testing notification delays. Resolved. Due to my advocacy, and with help of elected officials, the lab that processes Covid-19 tests in Montgomery County has instituted an automated process to provide results directly to those tested in 48 hours or less which is a meaningful improvement.
Second – testing of asymptomatic individuals. Montgomery County is significantly expanding access and availability for Covid-19 testing here in the neighborhoods with the highest positive case histories for anyone who wants or needs a test. I remain passionate in pushing for a way that the Caregiver/Advocate can be there in person to listen, ask questions, and take notes. I am trying to pave the way for me be with Chuck when he goes to the hospital for surgery. But it’s also
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important to open the door for others in a similar situation in our state. Seldom is the patient able to comprehend medical and technical news, especially if recovering from anesthesia or just simply bewildered, confused, or overwhelmed by the impact of unexpected medical information.
We will find out more about Chuck's situation later today, when we have our next telemed visit with Chuck's PCP. I will write more on this journal after that.
Life is short: advocate!
No News, More Waiting (Saturday, July 18, 2020)
Chuck and I had a telemed visit with his Primary Care Physician on Friday, July 17. We were hoping that she had reviewed the results of the ERCP procedure and had received the results of the biopsy from the Pathology Department of the hospital so she could discuss with us what Ampullary Carcinoma means for Chuck's future – surgery, further treatment, and/or chemotherapy.
She did none of that. She only wanted to "check in." Grrrrr.
During our discussion, we learned that the way Johns Hopkins Hospital System works is that the PCP does not make appointments or arrangements for the patient. The PCP told us that the biopsy results probably will not be completed until the middle of next week, and that the physician who did the ERCP procedure would get them and contact us.
Contact?
The PCP said that the ERCP physician "told me that he explained all that and about the follow-ups to Chuck after the procedure on Tuesday." Chuck could not remember a thing. He was still recovering from anesthesia when the doctor saw him in the recovery room.
I got a bit hot and fired back in my calm but highly determined voice, "If a patient had been sedated and had a procedure like that, then heard the word 'cancer,' how in the world would you think that he could understand or even hear anything else the doctor said? The word 'cancer' stops information processing."
I pressed further about why I am demanding that for future doctor's visits or procedures that Chuck will have to have, that I must be with him when a doctor speaks with him. I conveyed the same to a member of the Maryland Coronavirus Task Force who I know from past collaborations. I am hopeful that the State Department of Health will advise medical facilities to adjust the "no visitor" restrictions due to Covid-19 to allow caregivers to accompany patients provided caregivers get a negative result on a recent Covid-19 test.
The PCP was astonished that I was working on this access issue independently. She had never worked with a patient who has an advocate quite like me. Chuck looked at her on the videocam and said, "You don't really know my husband. When he gets focused on rules or policies that need to be changed, he makes that happen. He knows everybody and is exceptionally effective." Especially when I get angry and glare! Grrrrrr!
The PCP shrugged, smiled, and moved on. She told us something we did not know, in that the physician who did the ERCP installed two stents that restored bile flow. We could see the results of that: the jaundice is getting better. Chuck's eyes are still yellow, but not nearly as much. His skin tone is a bit better, too. The PCP explained that it may take two weeks to eliminate the excess bile and help Chuck feel better. The itching caused by the excess bile is still maddening and sleep- disruptive. She ordered follow-up labs next week to check on Chuck's bilirubin level.
She also gave us the telephone number of the Johns Hopkins Liver/Oncology Team and said that we must call to make an appointment. This is the team who would review Chuck's medical records, reports, procedure results, and biopsy
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pathology, to recommend and perform next steps. She would not say what those next steps would involve but did not deny that a Whipple procedure may be required.
We were able to reach the scheduling office for that specialized Johns Hopkins team, and were preliminarily set up for a consult, but were told that until the biopsy results are available, we must wait. No consult with the patient will happen until their team has all results, including the biopsy. Understandable, yet frustrating.
Chuck just wants to get this over with, and I don't blame him. His emotions roll from nonchalant to fatalistic. He has gone from keeping busy by reorganizing my kitchen (and driving me nuts!) to cleaning out the attic, to gathering non-worn jackets from the living room closets because "the caregiver who will tend to me in the hospital bed in the living room will need a place to hang her coat."
What do you say to that? I know he is on an emotional roller-coaster and has many things going through his mind.
Chuck got on a tear with packing up clothes that he does not or cannot wear anymore and insisted that we take them somewhere to donate or discard on Monday - which will be the hottest day so far this summer. When he gets focused on "gotta do it now," there is no reasoning with him. I just roll my eyes and say, "Sure, my love, we'll do whatever you say whenever you want." Then the next day after he calms down, we adjust plans to something more reasonable.
Chuck and I both want to update our wills, Advance Directives, Powers of Attorney, and final arrangements for cremation and no funeral. We have been doing these updates and will meet with our attorney soon to complete the final steps, legally.
Meanwhile, I continue to pursue policy changes in the pandemic era to help all health advocates & caregivers in our state. In my role as a local Civic Activist, I have been granted 3 minutes on Tuesday to testify on a Resolution before the Montgomery County Council regarding expanded, neighborhood-level, Covid-19 testing in the 10 zip codes in the state with the highest prevalence of Covid-19 cases resulting in hospitalization and, very unfortunately, deaths. The #1 zip code in the entire State of Maryland in this category is where we live. Yikes!
We are fortunate that we have the lab and worker capacity to expand testing from the current 5,000/day in the county to 25,000/day within a week. This Resolution is about expanding availability of free walk-up / no-appointment-required Covid-19 testing accessibility for our county, especially in areas with the most prevalence of Covid-19 disease.
Life is short: put all your contacts and all of your advocacy and community organizing skills to work. That truly has been my life’s calling.
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Strength from Faith and Optimism (Sunday, July 19, 2020)
These last few weeks have been exceptionally difficult for me. I use this journal to describe both how I feel and what is going on with my beloved husband's possible diagnosis of cancer.
I tell ya, when Chuck first showed symptoms on June 24, I was concerned. My concern developed into outright fear on June 29, when we had the first telemed appointment with his primary care physician. Then on July 14, our world was turned completely upside down when I read the results of Chuck's ERCP procedure and saw for the first time *that* word, confirming my suspicions from reviewing lab test results and tracking his symptoms.
I reacted as one might expect. Cancer is a fearsome word. While there are many advances in cancer detection and treatment, it is still scary as hell.
Chuck and I have had a warm, committed, and loving relationship since we met on April 25, 1993. We built our house and our future in my life-long hometown, rambling suburban Silver Spring, Maryland, just 5 miles from where I was born and grew up. Best of all, we were legally, officially, married. Yeah, MARRIED!, right here in the county of my birth and upbringing at the County Courthouse.
This cancer diagnosis was a real shock and a test of my physical, mental, and spiritual foundations.
I am truly blessed to have a warm and loving family on whom I depend. I also have a large and wonderful group of close friends, some of whom I have known almost my entire life, and some of whom I met later but who are as meaningful to me.
Those who know me will pretty much say that I am resilient. I have had my share of hard times, and we as a couple have had worse – a long three years (2012-2014) of pure hell for Chuck with Lyme Disease and Babesia co-infection with long-term antibiotic treatments, testing, and more.
Those were very dark days, when the Lyme-related infections produced toxins that affected Chuck's brain and made him rage with anger, outbursts of screaming, and hysterical crying (sometimes simultaneously), and then followed with brain fog, preventing him from knowing or realizing what he had said or done, or even where he was, the day of the week, or the time of day.
I was told by a Lyme Disease support group counselor that 80% of couples where one has Lyme Disease ending up divorcing due to the strain the disease places on the relationship. I survived that... WE got through it. Our marriage became stronger. I loved harder than I ever loved before. We will do it again.
Those who know me know that I do not display my spiritual side outwardly. I do not profess a particular faith or follow an organized religion. I was brought up in the Christian faiths, where Dad's family is mostly Catholic and Mom's family
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background was old-school Southern Methodist. I grew up in a predominantly Jewish neighborhood and went to more Bar- and Bat- mitzvahs than I can count. I was Best Man at three childhood friends' Jewish weddings, and one Christian wedding. I was also proud to be Best Man for Chad and Bill, a police officer and firefighter, at their marriage ceremony at a local fire house.
But however one believes, talks with God, believes in Jesus, Allah, El, Krishna, etc., or considers a spiritual beyond – for me, if it works for ya, that's terrific.
Early each morning since July 15, I have taken time to go out to our back yard and sit on a bench in a garden near where I buried my cat, Oscar, and think. Perhaps I am praying. I don’t know. I feel something inward, peaceful, pleasant, and centering. This spiritual meditation strengthens my soul and gives me peace.
This meditation time builds my confidence and recenters my soul so that I can support Chuck for whatever he needs, whenever he will need it. It keeps me strong enough to keep me from bursting into tears when I hold my beloved husband. And man, do I hold him. Hold him close. So much so that he has to tell me to let go sometimes because I squeeze him too hard.
This daily garden centering meditation strengthens my spirit and buoys optimism. I know that keeping a positive outlook will help Chuck fight this and give me laser-focus to do what I must to help.
I know, I know, my family and friends often remind me to take care of me. I understand. You can't be a good caregiver or supportive husband if you fall apart. If you don't have faith. If you become weak with fear and dread.
I assure you, I am over the shock. I am determined to love, honor, and cherish my husband as promised in our marriage vows for richer, for poorer, in sickness and in health... (I can't say the rest right now).
I remain strong, optimistic, and powerfully composed, now that I have re-centered myself, thanks to our garden, Oscar (my cat), and most of all, my very faith-filled family and friends who I know are praying for Chuck. Their prayers are sincerely appreciated, and I remain grateful.
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Hear me now singing my mother's favorite hymn In the Garden:
I come to the garden alone while the dew is still on the roses, And the voice I hear, falling on my ear, The Son of God discloses...
And He walks with me, and He talks with me, And He tells me I am his own; And the joy we share as we tarry there, None other has ever known.
He speaks, and the sound of his voice is so sweet The birds hush their singing, And the melody that He give to me Within my heart is to ringing.
And He walks with me, and He talks with me, And He tells me I am his own; And the joy we share as we tarry there, None other has ever known.
I stay in the garden with Him, Though the night around me is falling. But He bids me go; through the voice of woe His voice to me is calling.
And He walks with me, and He talks with me, And He tells me I am His own; And the joy we share as we tarry there, None other has ever known.
Life is short: have faith, be strong, maintain spiritual center.
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Chapter 2 Diagnosis and Surgical Plan
With Urgency (Thursday, July 23, 2020)
On the afternoon of Wednesday, July 22, after returning home from a lab visit for a status check complete blood count (CBC) for Chuck, we received a call directly from the physician who performed the ERCP procedure for Chuck on July 14. He had the results of the pathologist's report of the biopsies taken during the procedure. In that short three-minute call, we were told, "With all due urgency, you need to have a consult with a surgeon to discuss removal of a 'strongly suspicious' tumor."
Chuck and I looked at each other, and I asked, "What do you mean by 'suspicious'?"
The doctor explained, "That is the term we have to use when we think cancer is observed but are not completely sure."
Think? Not sure? My my my, how they avoid the obvious.
Anyway, the doctor gave us the name of a physician on the "Liver Team" at Hopkins Main, the big Johns Hopkins hospital in Baltimore. He said that the doctor would "reach out." We asked how soon we may hear from that doctor and were told "Very soon. I wish you well." Then the doctor clicked off. Bedside manner is not quite this doctor's best characteristic.
Numb, I stumbled into the kitchen to prepare dinner. Chuck had requested a special meal, which I was happy to make from scratch – home-made fettuccine with tender angus beef. I got out a pot, filled it with water, and set it on the stove to boil. I fired off an "OMG" email to my sister. As the water came to a boil, the phone rang again. It was the nurse who coordinates scheduling for the referred surgeon.
Boom: • Additional lab order issued to look for "cancer markers" in the blood • Additional CTs ordered at the Hopkins Imaging Center in Bethesda for more specific views • In-person appointment scheduled with this doctor on Friday morning • I declared myself as a necessary 'Covid-19 negative companion animal' to escort Chuck. Ha! the nurse did not quite know what to say about that. Chuck and I quietly ate dinner. We did not quite know what to say or how we felt. Chuck is happy that they were acting quickly because he hates "feeling bloated and itchy." He is still in denial about what the c-word means.
I, on the other hand, fear much, having had it confirmed six ways from Sunday that it all depends on the spread: if the cancer has or has not metastasized, and to where in his body. Will surgery get it all? Exactly what kind of cancer is this? What surgical procedure will be used? Will chemotherapy be involved? Radiation? We will learn what will be recommended when we see the doctor on Friday morning.
Some good news, if there is any. To check my "win" on the expanded Covid-19 testing Resolution in Montgomery County on which I testified, and that our County Council unanimously passed and funded on Tuesday, I went to a "pop-up" testing site on Wednesday in my ol' stomping grounds of Wheaton. I got there at 11:30 and only had to wait about 15 minutes for a gowned/gloved worker to swab the back of my brain through my nose. I hate to say it, but now that I'm four tests in, I am getting used to it.
When I arrived home, Chuck wanted to watch a movie and escape. We put on something from Australia that reminded us of our travels to that lovely continent. Chuck asked to snuggle, which I was only too happy to do. He held me closely... I tried not to cry.
We are moving forward with next steps – the surgical consult. I will update this journal after we know more.
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One Month WE Will (Saturday, July 25, 2020)
It has been just about one month since Chuck first noticed some symptoms of dark urine, clay-colored stool, and weight loss. Other symptoms of jaundice and itching followed within a week. Visits with doctors and specialists, labs and CTs, ERCP procedure, biopsies, etc., were scheduled and executed quickly.
On Friday, July 24, Chuck and I had an in-person visit with the doctor who will be his lead surgeon at Johns Hopkins. Her specialty is bile duct and liver cancer. Johns Hopkins, like many hospitals, has banned visitors of any kind to prevent the spread of Covid-19. A one-time exception to the ban allowed me to accompany Chuck to the doctor’s office. My being there was critical because there is no way that Chuck would have comprehended much of the science and detail the doctor described.
The doctor spent about 45 minutes explaining what to expect. Chuck will have to have a "Whipple Procedure" which involves removing about 30% of the pancreas, most of the duodenum (a part of the small intestine), a portion of the bile duct, the gallbladder, and any lymph nodes that may be positive for cancer. Since the gallbladder will be removed, the doctor also will remove about a foot of the colon and build a new method for bile to flow from the liver to the colon.
The surgery will require an 8- to 10-day stay in the Weinberg Building on the main Johns Hopkins hospital campus in Baltimore. Covid patients are treated in another hospital building so we don't have to worry about Covid contamination, especially for the night or two that Chuck will have to be in an ICU. Despite all I have done to get myself Covid-19 cleared, I will only be allowed to take him to the hospital and pick him up. I cannot stay with him. We will have to have regular visits through on-line means.
We were also informed that Chuck will also have to endure chemotherapy. He will have to have a port installed through which the chemo will be administered.
Until the doctor gets results from blood tests that Chuck will have on Tuesday, July 28, where she will look at "cancer markers" in the blood, we do not know if chemo will be given before or after surgery. We were told that if the cancer markers are quite high, then chemo will be required to reduce the cancer before surgery. But this is not what the doctor expects to see, given what the CT results indicate. That means surgery first, followed by chemo about two months later, after recovery. Chuck will be assigned to an Oncologist for that part of the process.
Likely, then, surgery will be about one month from now (4th week of August), with chemo to begin in October for about 8 weekly treatments.
Chuck will also have two more CTs done on Monday July 27. Those CTs will indicate more about the exact location of the cancer and inform the surgical team accordingly. Chuck's "case" will be "presented" to the Johns Hopkins Surgical Board of Review on Tuesday evening, and the Cancer Board of Review on Wednesday evening. All these steps are part of the required process to ensure his case warrants the recommended approach, and also to ensure insurance coverage requirements are met.
Meanwhile, Chuck is losing more weight and becoming weaker. I am making him more foods that will help to maintain his weight. The weight loss is startling.
Life is short: know your plans.
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To try to maintain a distraction and foster hope, Chuck and I spent a few hours yesterday picking out and ordering a new digital SLR camera that he wants. It will be delivered early next week. Chuck wants to visit some nature gardens and take pictures. That's his latest ambition. He wants to have a great camera with a big zoom lens to capture images of flora and fauna in the wild.
Sure, love, let's do this. It will be fun. Let's also take advantage of our Senior passes to Maryland State and National Parks. I will be overjoyed to process these photos for you. We will make art and have a joyful distraction.
I am also maintaining my positive outlook for post-recovery trips. We will travel again, once Chuck recovers from all this and is cleared to go and after we both get a Covid-19 vaccination. We will return to the Big Island of Hawaii, first class, and enjoy a "money-is-no-object," elegant resort on the ocean for as long as his doctors will let him.
We will get away from the invasion of Brood X of the 17-year cicadas that are due to emerge in mid-May 2021 and go to Nova Scotia and Newfoundland provided U.S. residents are allowed to travel to Canada.
We will... we will we will we will.
Life is short: We have a lot of living to enjoy.
Plans Change (Monday, July 27, 2020)
Back in August 2019, when it looked definite that my job would be coming to a close at the end of the year, I sat down with Chuck to discuss what my life plans might be, moving forward. He said, "Let's review our finances." That we did, and since Chuck has done so well managing my investments (and his), he suggested, "You know, while not ideal, you can retire if you want. You don't have to find another job."
Since Chuck is a Federal Government retiree and can extend his health care benefits to me as his spouse, and I have several year's "living-worth" of savings in the bank, I bid farewell to my employer, my many work-friends across the country, and held my head high as I turned the page to a new chapter of my life and our journey.
Chuck and I hatched a plan to travel during most of 2020 to hunt for where we may want to build our last home. Also, without my knowledge at the time, Chuck reviewed hundreds of designs for a house and bought a set of plans for what would be our final house, to have built wherever we picked as our place to settle. I loved the design: one floor; a large chef's kitchen with universal design elements to enable ease-of-access as we age; two large bedrooms, each with ensuite bath; a central, well-lit gathering room; and two dens/offices where we can have separate quiet time to read, work, or study. A nice deck, as well, would be enjoyable. Chuck and I began our travels to figure out where we wanted to move and build.
As much as I love Puerto Rico, unfortunately, this island was ruled out as a place to build our last home because "mainland gringos" ruined it. No local builders, carpenters, electricians, or other skilled tradespeople want to work with people from the mainland, because those people as a group are rude, nasty, demanding, and won't speak Spanish.
We fell in love with the west side of the Big Island of Hawaii, and after a two-week stay there in March, we thought we would return next year and look more intently for home sites. Hawaii had definite possibilities.
We also looked at investing in a condo on Southern Lake Ontario in Canada, to stay from May to October each year. We had made plans to rent a condo from July through October this year to look around for a condo to buy. However, due to pandemic travel restrictions and “stay home” orders, travel to Canada did not happen, as well as forced me to cancel a long-anticipated motorcycle adventure in the Western U.S.
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Owning a condo in Canada would allow us to stay there during the North American summer, then we would return to the U.S. somewhere to live in our new-and-last house during Autumn, Winter, and Spring, with additional winter vacation in Hawaii. Travelin' snowbirds, big-time.
Still thinking about traveling, I could not sleep after we went to bed. I was lying awake, meditating a bit to remain positive and to stay strong for Chuck, when I heard him moving around in the hallway. He has been sleeping in another room since he has been so uncomfortable and often unable to sleep. I heard him open the door from the kitchen into the garage. Then Chuck returned to his room, the house got quiet, and sleep finally overtook my overtaxed mind. This morning, when I woke at my usual oh-dark-30, long before Chuck woke, I quietly got up and went into the garage to see what Chuck may have been doing there last night.
That's when I saw it – the house plans that Chuck and I dreamed over – in the trash.
I tell ya, I ran to the basement, turned on the shower, got in, and cried. Hard.
This morning over breakfast, I asked Chuck what the noise was last night. He said matter-of-factly, "You know that building a house in Hawaii or anywhere else isn't going to happen. I've decided that this house is where I want to live as long as I will live. It's paid for. We know the area and have resources here. You have support... and will have it after I'm gone. So don't fight me. Plans change."
Life is short: yes, plans change. But WE WILL WE WILL WE WILL WE WILL LIVE brightly as long as WE can.
Stress (Wednesday, July 29, 2020)
It has been a rough day. Chuck has had a spike of the hormone cortisol which affects his body's limbic system. I am all too familiar with this situation because the very same thing happened during the three years of Lyme Disease Hell (2012- 2014). When cortisol is released by the adrenal gland, Chuck gets cranky, irritable, and short-tempered. Cortisol is also known as “the stress hormone." I am human. Chuck’s behavior when he has these Cortisol spikes annoy and frustrate me.
No matter what I did today, it was wrong. Today was one of those “you always ... whatever” days. I am glad I am experienced from before in dealing with a cortisol spike. I let the yelling, fits of temper, and "you you you" roll off my shoulders. It really is not Chuck talking; it is the damned hormones. I have read enough literature to know that I am dealing with an unfortunate lingering effect of the toxins produced by the long-lasting and lingering Post Treatment Lyme Disease Syndrome (PTLDS). This is a real thing, and it is no fun.
How do I deal with it? Smile and love him all the more.
Again, it is not Chuck. It is a combination of fear of the unknown in his future stressing him out, plus lingering effects of Lyme Disease toxins. I am only surprised it took this long for Chuck to erupt into cortisol-driven mini-tantrums. What is sad is that he has no idea that there is a scientific reason why he feels this way. By later tonight, he will not realize that he even behaved this way. He will smile, hug me, and even scratch my back. He really does love me – it is the hormones that make it this way. Such is the PTLDS Life. I was prepared.
Life is short: love him tenderly.
More of the Unknown (Friday, July 31, 2020)
The problem with getting medical tests is that they provide results that require a medical degree to interpret. I have earned a PhD in Sociology, a Master’s Degree in Administration, a BS in Microbiology, and a BA in Education, but those academic conquests are insufficient to understand some of the medical test results and mumble-jumbo.
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Chuck had two CTs on Monday, July 27, and blood drawn for labs on Tuesday, July 28. In a nutshell, the CT results of exams of his pelvis and chest revealed nothing unusual, except once again the mass at the bile ducts near the pancreas. That's the "ampullary mass" to which several doctors now refer as a malignant tumor. The CTs confirmed the tumor, but also seem to indicate no masses elsewhere, thus seem to indicate no spreading (metastasis.) No enlargement of lymph nodes or the adrenal gland was observed either. Whew!
The labs were also confusing to me, a guy with a tangential medical knowledge. The Immunoglobulins (4 IgGs) were all within "normal" range. The carbohydrate antigen (CA) 19-9 (cancer marker) was 153. The standard range is 0 to 35. So yes, the cancer marker is significantly elevated.
My questions that I can't really find answers to through internet searching (and I don't want to do that too much because it only confuses and frightens me more) are, "How high is high? How high a test result for CA 19-9 would mean that chemotherapy would be recommended first before surgery?" as we were told when we visited with his lead surgeon on July 24.
A little bit of info I learned from searching is that a CA 19-9 result like that IS indicative of a "resectable" tumor, meaning that the cancer is not so far gone that the tumor can’t be removed with surgery.
More unknowns: results of presentations of Chuck's case to the Johns Hopkins Board of Surgical Review and Board of Cancer that occurred on July 28 and 29, respectively. We can only assume the case was presented among others and that the surgeon's recommendation for Chuck to have a Whipple Procedure stands. She said that she would let us know if the Boards denied her recommendation. No news is good news: we assume her initial recommendations will be what happens.
More unknowns 2: Chuck's Prostate-Specific Antigen (PSA) level is 9.3. That is the test men get to indicate if there may be cancer in the prostate gland. A 9.3 level is double what it was last year, and "normal range" is 0.0 to 4.0. No one – his PCP or lead surgeon – will tell us (or can tell us?) if there is a relationship between having an elevated PSA result and if, or if not, there may be cancer of the prostate. I have asked that specific question of his PCP and surgeon, and both referred us to a urologist. There was no mention of the prostate in any of the reports from the 3 CTs that Chuck has had. All we could do is schedule an appointment with a urologist who happens to be the leading scientist at Johns Hopkins on prostate cancer. We must wait until that visit on August 11 to learn more.
To manage discomfort with such uncertainty, confusion, frustration, and fear, we were going to explore with our new digital SLR camera. We spent a few hours yesterday using YouTube to view guidance from others about this camera and all of its features. However, today it is raining. Perhaps we can begin this diversion tomorrow. Female cardinal in our back yard
Life is short: discomfort with the unknown is part of this journey.
Throwing Things Away (Saturday, August 1, 2020)
One of the most disheartening things going on now is that when I must leave the house for an essential errand, Chuck uses my absence to clean house. Well, if it were just cleaning, I would not mind. But it is what he is "cleaning out" that is disturbing. I seldom leave the house, but there are times when I must, such as to get perishables or pick up a prescription. That's really it – I am not even riding my Harley to make sure I don't do anything stupid like having a crash before Chuck undergoes surgery.
When I return home and "decon" myself in the garage, I check the trash can we keep in the garage. These last two weeks, the trash can has been filled. Chuck began, at first, to discard unwanted and non-fitting old clothing. Then he progressed to
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throwing away a few things from his life that he kept all these years: some of his family photos, some mementos, a lot of books – two shelves-worth from our living room glass cabinet.
When I asked him why he was throwing away these things, he got a bit agitated and said: • I don't need all this stuff. Especially after I'm gone, it will be less for you to have to dispose of. • When "the woman who will take care of me" has to come, she will need a place to keep things (pointing to the living room case). • I was keeping some things for our next house, but we aren't going to do that, so why keep them?
It was all I could do to avoid bursting into tears in front of him.
Later, when we both calmed down, I asked him if he would gather things he thinks he doesn't want and let me look through them before throwing them away. I may want some things to remember.
Life is short: I'm crying again. :-(
Surgery Plan (Monday, August 3, 2020)
As anticipated, we received a call from Johns Hopkins today. The lab results were as I expected – Chuck's cancer is not "that bad," and there are no indications of spreading (metastasis). Still, one can't help but be very concerned about seeing "Ampullary Cancer" on pathology and endoscopy reports.
Therefore, as Chuck's surgeon said, surgery will proceed first, with follow-up chemotherapy if required. She will not know if chemo will be required until she opens him up and verifies spreading (or not), and also reviews pathology results from additional biopsies taken during surgery. So, on Monday, August 24, Chuck will be admitted to Johns Hopkins Hospital in downtown Baltimore. The surgery will occur that morning. It will take approximately six hours for the full open Whipple Procedure. He will be closely monitored for one or two nights in an Intensive Care Unit, then moved to a regular room to progress through stages of recovery. If all goes well, he will be released in eight to ten days after the surgery.
Eight to ten days? Both Chuck and I were aghast. Chuck had never been in the hospital for a day in his life (since birth, anyway.)
Due to Covid-19 restrictions, I will not be able to stay with Chuck, or even visit him, while he is in the hospital. Not being able to visit was emotionally straining for both of us as well. Chuck is so dependent on me, and I am upset on knowing that I can’t be there to help. Physical separation during a time of great need is painful to think about and caused much anxiety.
I will keep connected with him via his laptop there and my computer at home. We tested secure internet videochat capabilities, and it will work well. However, in case things change regarding restrictions on my being able to accompany him, I have scheduled another Covid-19 test for myself. My test will be early enough to allow me to have the negative results before his pre-op visit on the Friday before the surgery (August 21). Chuck will have to go to Johns Hopkins Outpatient facility then for pre-op tests, an EKG, and another Covid-19 test. I may have to sit in the Jeep all that time, but I am determined to be ready in case I am allowed to go in with him.
Meanwhile, before all these tests and procedures, Chuck and I will move forward with more photo journeys. Yay! Some fun, anyway.
Life is short: prepare, advocate, and support!
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Reorganizing, Sigh (Thursday, August 6, 2020)
My beloved husband is driving me insane. I love him, I really do. Everything he says or asks for, I smile and say, "Sure, my love." But I have to draw a line when it comes to reorganizing MY kitchen, now for the third time in as many weeks.
Unfortunately, Chuck is suffering from acid reflux and indigestion. He is finding that he cannot eat many foods, including vegetables, that he once enjoyed. He is losing weight at the rate of about 3 pounds a week. In consultation with his PCP, we have tried various things, including prescription-strength medicines and lots of food changes. Shakes or smoothies made with protein powder/weight gainer don't go down. He tries, but none of that works. He goes on-line to find recipes for me to try to cook for him. I'll cook anything, even if I can't eat it. His latest finding is a vegetable spiralizer. He wants me to prepare zucchini spirals, mix in cheese, and bake it. He ordered one of those devices, and it's coming tomorrow.
Meanwhile, he had to reorganize MY kitchen AGAIN to make room for this small thing. This morning at my usual oh-dark-30, when I went into the kitchen to prepare batter for the only thing Chuck can eat – my 5 gluten-free flour mix waffles – I could not find my mixing bowls, hand mixer, and old-but-reliable big spoon. He moved them out of our hutch where they were stored to ... somewhere else. I finally found them on a back "undershelf" on the other side of the kitchen.
I built this hutch myself in 2014 when Chuck was sick with Lyme Disease and I had to stay home to be available as needed. Building the hutch gave me an intense "thing-to-do" to keep me busy.
I spent 20 minutes re-reorganizing MY kitchen this morning! And yes, there is plenty of room for the vegetable spiralizer in my hutch. Just had to stack a few things. No need to remove items and put them somewhere else or throw them away as he did with some of his old pots and pans I found in the garage trash can, sigh... again.
I am not going to say anything. That's how he is reacting to dealing with the unknown, by doing something, anything to be in control.
To avoid more kitchen reorganization frustration, yesterday afternoon we pulled out our new camera and drove to an area of Montgomery County known for birding – an old, closed landfill. But at 2:30 in the afternoon, it was bright, sunny, hot, and lifeless. Oh well, got Chuck out of the house - and MY kitchen – for a little drive!
Life is short: love him with all you got, even if he drives you nuts.
Rough Nights (Friday, August 7, 2020)
On top of anxiety, worry, and concerns about his upcoming surgery, Chuck feels like he is having a flare of very painful gout. He was up most of the night in pain, thinking that I could not hear him crying.
He got up and went into the kitchen well before dawn. I got up when I heard him and found him scouring through a drawer filled with unused prescription medicines he has kept for several years. No worries – no narcotics – but tons of different antibiotics that were prescribed for the Lyme Disease. He has had gout before and knew that he had been prescribed drugs for it as well. He didn’t see them, and in his frustration cried out, "You aren't helping!" and vented some more. He is in an awful state, which makes him miserable. When he feels so bad, he lashes out and says things that could be hurtful if I did not know him as well as I do.
Because I keep scrupulously detailed records, I was able to look up what he had been prescribed before. Found it! Cholchisine and Allopurinol. Yes, both meds were in the drawer. Chuck remembered them as well. He wants to start taking
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these drugs again. I tried to convince him to let me reach his doctor and ask, but he is in such a state, he just yelled, "I'll take care of myself!" and shut down, refusing to listen to me.
My stamina, patience, and faith are being tested now regularly as we get closer to the date of surgery on August 24. Lord, give me strength.
I just really wish that I could twitch my nose like Samantha on Bewitched and make it all go away, make Chuck instantly better. All I can do is let him treat me as a verbal punching bag and let the "you don'ts" (care, communicate, listen, help, do anything) roll off my shoulders. He is not abusive (physically or mentally), just angry at the whole situation, now complicated by a flare of pain that he thinks is gout.
Update: Chuck received an updated prescription for the gout drug Colchicine from his PCP rather quickly on Thursday, after I contacted her.
Life is short: keep breathing and love harder.
We Danced (Saturday, August 8, 2020)
When Chuck realizes that he has said things he didn't mean due to being grouchy and irritable from pain and lack of sleep, he has his ways of expressing his apologies. First, he directly says, "I am sorry." Those three words go a long way. Then he continues, "I am sorry for saying you don't care. You care more than anyone in the world. I know that, but it should not go without me saying I was wrong."
Saying that lets me know he recognizes when he has been in a really bad mood and has been venting his anger at his pain on me. I get it: I am a safe target. He can yell all he needs to, knowing I won’t attack back or leave him. I will give him a goofy grin, shrug my shoulders, and love him more.
Today, his apology included a nice surprise. Even though the gout means that putting weight on his foot would send shooting pains up his leg, we danced.
He asked me to turn on our player piano and have it play a tune that we both enjoy: Colour My World by Chicago (written by James Pankow, 1970). The words are meaningful to both of us. I sang gently:
As time goes on, I realize Just what you mean To me And now, Now that you're near, Promise your love That I've waited to share And dreams Of our moments together Colour my world with hope of loving you
He held me closely, and we slowly moved around in a circle while the piano played. Some may call it dancing. We call it love.
Life is short: dance and sing with your love.
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Key Word: Flexibility (Sunday, August 9, 2020)
Chuck is antsy. He wants to get out for more photo explorations, but he feels uncomfortably bloated, gassy, and generally sick. I continue to change his diet with limited success. He wanted to wait one more day to go on our next photography adventure, so we stayed home on Saturday and struggled to find things to do together. He wanted to watch the baseball game with his Big Bear, but the game was on late. We talked and watched some Aussie TV.
In between, the misplacer-of-things (me) continued to look for the Maryland State Parks Senior Passes that I received last year. I wanted to take Chuck to a state park to photograph wildlife. But for the life of me, I could not find where I put those passes. I hunted and hunted for hours on Friday in all the likely places, to no avail.
Taking a break, I got busy in the kitchen trying new recipes for Chuck. He had found a new gluten-free blueberry crumble recipe thinking it would be easy on his stomach, and I made it for him. It turned out great and he loved it!
Since we did not go anywhere on Saturday, I had one more day to figure out where in the heck I put those state park passes. At night, I pondered more about where those passes were. Kept my mind rolling for a couple hours! And darned enough, I thought of one place to look for those passes in a dream. Of course, at 3:30 am when I just couldn't stay in bed without looking for them again, I found them!
Today, Sunday, Chuck was feeling better, so after breakfast, we packed up the Jeep with the camera, water, and snacks, tucked the park passes into my wallet, and began driving to Patapsco State Park, Cascade Falls area, about 40 miles north of our home.
We were about 10 minutes from our destination when Chuck grabbed his stomach and began moaning in pain. I pulled over and asked him how I could help. He cried out and said, "Take me home!" I redirected the GPS to find the quickest way back home. We passed a CVS drugstore, and Chuck yelled, "Stop! I have a 40% discount loaded to my card. Get Alka Seltzer gas relieving gum, now!" After recovering from being startled, I turned around, parked, masked up, went into the store, found the gum, paid for it, and hurried out to give it to Chuck. I assured him that we got the discount, and after chewing the gum, he seemed to feel better.
Along the way back home, we passed a farm with horses on it. Chuck got excited. "Turn back! Let's take pictures of the horses! That's what people do!"
Hmmm... really?
Me: "I thought you were sick?"
Chuck: "NO! I don't want to waste the day... go back! That's what photographers do!"
So we did. Nice horses; very friendly. If I had been wearing my cowboy boots, I would have been tempted to ask to ride. We visited the horses by their fence, and they gently returned friendly neighs, snorts, and even a
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few licks. Chuck has not been around horses very much, so he did not know what to expect but was so happy. He smiled and laughed.
After the ordeals that Chuck has had to suffer these past several weeks, this spontaneous lighthearted visit with these horses brought comfort to my heart and happiness to my love.
We reluctantly called it a day when the horses figured out we did not have food for them and they wandered away. We returned home. We had a light meal, and as I write this, Chuck is watching the afternoon Nats game like nothing happened.
Perhaps we will try to go to the State Park on Tuesday.
Life is short: love with flexibility.
Busy Week (Monday, August 10, 2020)
Chuck and I will be busy with medical appointments this second week of August.
Monday (10 August): telemed appointment with the surgeon to confirm the surgical approach and answer questions (I have at least a dozen).
Tuesday (11): telemed appointment with a urologist to chase down and coordinate anything that may be required due to a high recent PSA (prostate-specific antigen) lab result. If necessary, I will ask that this doctor coordinate with the surgeon whose office is in the same building, on the same floor, at Johns Hopkins.
Wednesday (12): telemed appointment with the anesthesiology team to ensure the anesthesiologist is fully aware of complicating health factors for Chuck. I have all my notes from his reactions during past surgeries, as well as a complete list of allergies and lab results pointing to some issues with the limbic system. A significant part of my job as Chuck’s Health Advocate is to connect and coordinate.
Friday (14): I go get my next Covid-19 test, so I will have negative results before I take Chuck to the Johns Hopkins Outpatient Center for pre-op tests, EKG, and his own Covid-19 test on Friday, August 21.
Monday (17): Two hour on-line "class" from Johns Hopkins about Chuck's surgery.
Life is short: caring shows in your preparation and homework.
Update (Thursday, August 13, 2020)
We had a busy week with telemed appointments for Chuck as we prepare for him to have major surgery on August 24. The intensity of this week set Chuck’s mood on edge, understandably. He tried to remain calm in the face of fear. I maintained a steady “game face” and tried to be upbeat, however difficult and daunting. Being strong for my man is a must.
On Monday, we met via computer with the lead surgeon. Even though she was officially on leave, she spent 45 minutes with us reviewing lab and CT results. She confirmed my own interpretations of these tests – yes, he has a cancer, but it is not aggressive. It must be removed, but it is unlikely that it has spread anywhere.
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Via the wonders of technology, she showed us the CT images and explained what we were seeing. His liver and kidneys look good. His pancreas is healthy. He has no polyps in the colon. His stomach and lungs are in good shape. But that cancerous mass at the ampulla of Vater is rather large, so no wonder Chuck got jaundice when the bile ducts got blocked by the tumor. The ampulla of Vater is the spot where the pancreatic and bile ducts release their secretions into the intestines.
She went over what to expect during and after surgery. She answered most of my questions, though she deferred any questions about possible involvement of the prostate to the urologist. We had a telemed visit with the urologist at Johns Hopkins on Tuesday. I must say, he is quite the skilled professional. He had a good "bedside manner" and explained lots of things we didn't know. After reviewing Chuck's tests and CTs, he explained that it was likely that Chuck had an elevated PSA test result because his prostate is inflamed and enlarged due to the problem higher up in the colon. The aggravation of the bile ducts could "likely antagonize" the prostate and cause a spike in the PSA level.
He said that even if it were a cancer, Chuck could wait for further testing and treatment, because the outcome for waiting as long as a year would be no different from testing and treatment now. That was a relief! He ordered another PSA test and will look at trends in the PSA levels. If the trend continues to go up after the surgery, then the next step, in a few months after surgical recovery, would be to get an MRI. The MRI images would show with precision the location of any suspected lesions, which in turn would indicate more accurately where to take biopsy samples.
On Wednesday, we had a 90-minute telemed visit with a nurse practitioner who asked a million questions for pre- operation preparation. Man, was she thorough! She went through significant health history. Imagine me there with my three-ring binder, allowing me to reference every test, procedure, doctor's visit, outcome, treatment, medication, reaction to same, etc., etc. going back 15 years! She said that she had never met with a patient who was so well prepared. Chuck looked directly into the webcam and said, "I have the best medical advocate in the world." She agreed.
I choked up. It's what I do. It's who I am.
Later, I looked at Chuck's electronic chart on-line, and saw that the nurse practitioner took 12 pages of notes, ending with "Never have had a patient and a spouse so well informed and prepared."
Next steps – visit the Johns Hopkins Outpatient clinic in Baltimore on August 21, for labs and an EKG that the nurse practitioner ordered, the PSA test that the urologist ordered, and another Covid-19 test that the hospital requires for Chuck. This advocate (Companion Lion) will escort Chuck in person through these procedures. Roar! Have them try to stop me! I have arranged to get my next Covid-19 test by making an on- line appointment. I will have a "fresh" negative Covid-19 results for myself so if I am challenged as Chuck's "Companion Lion," they'll have more difficulty refusing my accompaniment.
The telemed appointment on Tuesday was early in the morning, so we decided to try to go on a photo shoot at the Patapsco State Park when it was over. We went to two areas of this lovely park. It was hot and very humid, so the animals were resting. We did not see much of anything to take pictures of, but we enjoyed two one-mile hikes. In the heat. With lots of sweat. Next week, provided the weather and our energy cooperates, we will try to go on another photo adventure on Maryland's Eastern Shore.
Life is short: love every minute you have with your spouse. In sickness and in health.
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Life Planning (Saturday, August 15, 2020)
This is information for those who are unfamiliar with what a same-sex couple deals within the United States and specifically in Maryland. I tell ya, it's been quite a journey. Heterosexual couples have not had to deal with some of the barriers and roadblocks to living that were put in place in the past, mostly based on (in my opinion) misunderstanding, fear, homophobia, and some biblical citations that when interpreted strictly, lead to discrimination.
In 1998, when Chuck and I were ready to build our house, state laws were either silent or against same-sex couples having equality of any form. In some states, such as Virginia, it was against the law for a same-sex couple to co-sign contracts. Yep, we could not jointly own a house. That is precisely why we would not consider buying or building a home in Virginia, where Chuck lived and where my office was located “temporarily.”
Some of my family and friends may think that I would never consider leaving Montgomery County, Maryland, where I was born, raised, educated, and made my home. While leaving a "home base" would be hard, relocation is often part of establishing a new life. I was considering just that, until I learned about Virginia's arcane laws relating to same-sex couples. Maryland has always been more progressive: a sweeping change of many laws in the Maryland Constitution was passed and put into effect in 1972, removing restrictions on same-sex co-signing of contracts. Those 1972 changes also abolished dozens of other legacy and outdated laws or restrictions pertinent to same-sex couples. That was a major reason why we decided in 1998 to build and make our home in my Silver Spring, Maryland, hometown.
But there were other issues, too, such as major tax consequences of ownership of our home and the value of half of the house when one of the co-owners dies. In 1998, in the view of the Laws of Maryland, we were considered strangers to each other. We had no rights of survivorship. Technically, if I died without a will, my family could claim half my assets, including half of the house in which we lived as well as my retirement investments, savings, etc. That's why we both had wills prepared in 1998 to designate specifically the other's rights of survivorship and inheritance of property and assets.
At about the same time, we also had Advance Directives for Medical Care and Living Wills prepared, so it was clear that Chuck would (and could) speak for me and make medical decisions if I were incapacitated, and vice-versa. Further, we had Powers of Attorney prepared so that one could act in the financial interests of the other in case of incapacitation. These were important documents to have, especially since we were not allowed to marry, and otherwise were considered strangers to each other by the law.
Fast forward to 2012, when the Maryland Legislature passed, and the Governor signed, the Maryland Marriage Equality law providing for same-sex marriage. Not "civil union," but full marriage as recognized in thousands of federal, state, and local laws, regulations, and provisions. The Maryland Marriage Equality law was immediately appealed to referendum in an attempt to overturn it. On November 6, 2012, a majority of Maryland voters voted "no" on the referendum, which meant that the Maryland Marriage Equality Law was upheld, as the first same-sex marriage law in the nation to be passed by popular vote. It became legal for same-sex couples to marry effective January 1, 2013. We were legally married in the Montgomery County Courthouse on April 4 of that year.
We "celebrated" our marriage by going to the Montgomery County Land Records Office in the Courthouse and filing to retitle our house as "tenants by the entirety," which is only allowed for married couples. With a house titled that way, when one spouse passes away, the surviving spouse gains full ownership of the property automatically, and there are no tax consequences. Now, with major surgery looming for Chuck, carrying a risk of a bad outcome, it is time to have all of those other documents updated. They need to be in line with current laws and regulations. And they need to reflect us as a married couple. We have updated the paperwork, and plan to sign them this coming Thursday.
This is the most difficult "adulting" we have had to do. The complex and heart-wrenching discussions about "when to pull the plug,” funeral arrangements, bequests, etc., were emotionally straining, but a relief as well, because we each fully understand the other's wishes.
Life is short: do adult things as necessary.
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Unable To… (Sunday, August 16, 2020)
Today is my birthday. Chuck baked me my favorite spice cake yesterday, without burning down the house – an accomplishment! He loves me so, and I am blessed to have him. We began this morning with a nice snuggle and a long back scratch. He gave me a really sweet home-made birthday card "to the best husband in the world." Sniffle, sniffle.
However, his health has taken a dramatic turn for the worse this weekend. He experienced horrible acid reflux all day Saturday. A med he had been prescribed previously for GERD (GastroEsophageal Reflux Disease) is not working. Chuck has not been able to keep food down since Saturday night. I have done everything I can think of to help, as yet to no avail.
Now he is on a completely bland diet, and we're trying to keep him hydrated, at least. I asked him to drink diluted Gatorade and even some PediaLyte. He couldn't keep those fluids down either; violently vomited them up.
Why do things like this happen on weekends when his doctor is not available?
We can send the doctor a message. However, when we've done that in the past, the response has been, "Go to the emergency room." Chuck's response: “NO! I WILL NOT GO TO AN ER! NO! NO! NO! NO! NO!”
Well...I'm giving him until mid-afternoon today. Chuck must get medical attention, and sooner than later. If Chuck can't keep liquids down, there may be something causing this problem that only diagnostic scanning can "see." And that, unfortunately, must be done in a medical facility.
Why, oh why?
[UPDATE, Sunday afternoon]
Chuck and I had a long talk, and he realizes that his condition is much, much worse. He can't keep anything down, even water. His vomit is green, which is indicative of bile. If it's coming out that way, then something is definitely going on and requires medical attention beyond my skill set.
Since Chuck refuses to go to the emergency room on a Sunday (which, frankly, I understand), I asked my friend Keith to come over. Keith rose through the ranks with me as a paramedic, then became a leader of medics in our home county.
Keith asked the on-duty medics at our nearby fire station to come over and give Chuck fluids by IV. He looks a little better. They also checked what they could, and do not think Chuck has food poisoning or any other issue like that. Chuck refused transport to the local hospital ER. Even Keith couldn't convince Chuck to go to the ER tonight. However, together, we got Chuck to agree with this plan:
* Nothing to eat or drink by mouth tonight. * In the morning (probably really early, as neither of us will be able to sleep much), Chuck should try drinking a few sips of water. * If tolerated, then try to eat a little (very little) soft food, like a small, bland, gluten-free waffle. * If tolerated, then call his PCP for further guidance. * If not tolerated, then Chuck agreed for me to take him to the Sibley Hospital emergency room. He will need at least a CT of his abdomen to find out what's going on. Sibley is part of the Johns Hopkins Medical System, so they will have access to all of his records. Life is short: hold out faith for comfort and healing of this next crisis.
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Crisis Averted (Monday, August 17, 2020)
We made it to Monday morning after a crisis weekend for Chuck. I am extremely grateful to my good friend Keith for responding yesterday and helping us so much. After he arranged for Chuck to be given an IV under the supervision of the medic team at our local fire department, Chuck had a fairly quiet night.
Chuck woke at 5 am to see me sleeping in a chair across from him. We spoke, and he sounded much better than I thought he would. He drank some water and held it down. I took his vitals (blood pressure, temperature, pulse); all incredibly normal. He drank some Ensure Max... and held it down. His stomach has stopped rumbling violently. I held him close while I examined him for pain, swelling, or other signs of infection, intestinal blockage, or whatever.
We decided to try to reach his doctor before making the trip to an emergency room. Surprisingly, we connected with her at 7 am. On listening to the tale of woe this weekend, she turned the phone call into a full webcam-enabled telemed visit. She "examined" Chuck via wherever I pointed the web cam.
No indications of an intestinal blockage. The doctor wasn't sure what caused Chuck's crisis, but she said that he should keep drinking fluids and try some soft food later in the day. If he eventually moves his bowels, then we should just keep him on a liquid diet and stay home until I take him to the hospital for pre-op testing Friday and then surgery on Monday.
You know, there are reasons for things sometimes that are beyond comprehension. Back in April, I jumped in to serve as a Basic Life Support (BLS) medic when entire shifts at my local fire department were quarantined due to Covid-19 exposure. Credentialing requirements were lifted; however, while on duty, I took some more training, and became current in my EMT credentials once again including administration of IV fluids. The doctor found out that I have current training, so she authorized home delivery of IV fluids and equipment so I can administer an IV at home "as needed." Those items were delivered by courier at 8 this morning. The doctor also will have a nurse do a home visit, but she wasn't sure when a nurse could come.
I now have IV fluids that I can administer if needed. I am relieved we now have a plan. Chuck will be far more comfortable at home, and I am darn glad I have the credentials and authorizations to provide care at home.
[UPDATE, 5 pm]
A visiting nurse came at 11:15 am. She had been dispatched by the doctor – I guess this replaces a “house call” (of old) by a physician.
The nurse examined Chuck and was surprised by how well he was looking given the report from the weekend's situation. She asked me to prepare him a soft meal, which I did. I made a small gluten-free pancake and 1/2 an egg. Chuck ate the meal and did not have nausea following.
Whatever Chuck had went away on its own.
I will keep the IV items that were delivered "just in case," but as it looks now, I will not have to use them. Thankfully. I will continue to prepare small, soft, and liquid meals for Chuck until the surgery, one week from today.
Life is short: doing my duty where it counts for my love.
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Flying With Eagles (Wednesday, August 19, 2020)
As dramatic as the short-lived but frightening situation was with Chuck over the weekend, he is now stable and eating.
I think there were two things that turned the situation around:
1. Chuck did not want me to give him an IV. It was bad enough when a medic did it on Sunday, but he knows that no matter how gentle I would try to be, I do not have the extensive experience that the medics have, and it could hurt! Besides that, he knows that while I am steady-in-the- moment of response, doing something like that would be traumatic for me. I have had more than enough trauma over this situation.
2. We took an on-line class provided by Johns Hopkins Hospital on Monday afternoon. During that two-hour session, we learned more about what the Whipple Surgery entails. The recovery is likely to be rough in these ways: • He may have issues with producing his own insulin in the pancreas that remains. Blood sugar levels must be constantly monitored. Worse case, he will become diabetic. Best case, he won't, at least not right away. But studies have shown that it is likely that he will become diabetic within a few years. • About 1/3 of the patients who get that surgery are sent home with drains because the connections the surgeon stitches together for the remaining part of the pancreas and where she reattaches the colon to the stomach may "leak." In-home nursing care will be necessary to monitor the drains and remove them as soon as possible. But that may be a week, or possibly two weeks. • Until we get a full pathology report which will come about 10 days following surgery, we will not know if chemotherapy will be necessary. Chemo has its own cycle of causing major issues with nausea, vomiting, inability to absorb food, susceptibility to infection, and weakness. We pray that won't be the case, but we just don't know. • The life expectancy is 15% after 5 years. Chuck knows; it is why he has become fatalistic. • Patients may lose another 20 to 25 pounds after surgery! That last statistic alone made Chuck think, "I've already lost 20 pounds. I look like a wasted man; no longer have my physique that I have prided myself on. I just can't end up at 140 pounds (for a man of 5' 11")." He willed himself to get better and to eat. Small meals, but often. I am preparing foods that he can tolerate and that may help to avoid more weight loss before he goes in for surgery.
He also continues with his fatalistic outlook. We have been having hours of "those discussions" about his final wishes. Where he wants his ashes to be scattered. How to execute the bequests in his will. What he wants ME to do in my future.
He wants me to buy a condo in Puerto Rico and live there during the winter months. Sure, I love the island and have many friends there. Sure, I can muddle through the language and improve my skills with more immersion. But really... without Chuck, I will just want to crawl in a hole. He is my life and my reason for being.
Chuck wants me to enjoy my future, and dreams of me living where I could enjoy warm sunshine during the harshest winter months. He wants me to live brightly. So much so, he wants to pay a down payment on a condo soon. Man, oh man, have we discussed the future a lot. So much so that he has written instructions for me to invest in a condo in Western Puerto Rico while he is still alive, so he can be assured that I will be happy. He has also relinquished any hope of "snowbirding" to Australia.
With friends in Puerto Rico, Feb 2020
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After gaining strength this week from eating and keeping well-hydrated, Chuck wanted to go on one more photo journey before we have to attend to final pre-surgical activities on Thursday and Friday. I was glad to plan this next trip to get my mind of even thinking about living without my husband.
On Tuesday, as Chuck wished, I drove us to the Blackwater National Wildlife Refuge on Maryland's Eastern Shore so we could try to take photos of wildlife. We drove around for about an hour and didn't see much. Then we found an observation area. We stood at the top, all alone. And we saw them: bald eagles. Soaring. Fishing. Flying high. Wowzers.
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Then Chuck recalled a song whose lyrics are meaningful, particularly to us and our lives: Wind Beneath My Wings, written by Jeff Silbar / Larry Henley and made famous by Bette Midler.
This is me speaking to Chuck:
It must have been cold there in my shadow To never have sunlight on your face You were content to let me shine, that's your way You always walked a step behind.
So I was the one with all the glory While you were the one with all the strength A beautiful face without a name for so long A beautiful smile to hide the pain.
Did you ever know that you're my hero And everything I would like to be? I can fly higher than an eagle For you are the wind beneath my wings.
It might have appeared to go unnoticed But I've got it all here in my heart I want you to know I know the truth, of course I know it I would be nothing without you.
Life is short: Chuck is, indeed, the wind beneath my wings.
Legalities (Thursday, August 20, 2020)
Today we visited our attorney and accomplished the important legal matters that we had planned.
We signed our updated Wills, Advance Directives and Living Wills, HIPAA releases, and Powers of Attorney for each other. The process went smoothly, and we feel better having all of our "legal ducks in a row."
Life is short: Being prepared legally is incredibly sad, but important.
The "Thing" (Friday, August 21, 2020)
Chuck called to me on Thursday afternoon and said, "You have to look at this!"
Somehow, some way, he developed a grape-sized bulge or growth or "thing" on a private body part. He was convinced that he was bitten by killer mosquitoes in a portable toilet while we were visiting Blackwater Wildlife Refuge on Tuesday. Now he has this, um, unsightly "thing." I really don't know how to describe it. It does not appear to be infected; not red, not hot, not oozing anything. Just really scary-ugly!
Another frantic call to his doctor got him an "urgent" appointment with a doctor in the PCP's practice for Friday morning in the office in Bethesda. Not with his PCP, but at this point, we were pleased that at least he could be seen by a physician. I got him there well ahead of time for a 9 am appointment. He came out at 9:10.
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"A bust!" he said. "The doctor said that I need to see a urologist." The doctor who examined him prescribed him a topical ointment and provided no other treatment. That was it.
I then drove him from Bethesda to Baltimore and escorted him into the Johns Hopkins Outpatient Center where he would have pre-op tests. They let me in. However, once Chuck was taken back to a room to draw blood, they realized that I was not a patient and asked me to leave. Oh well, I tried. He also had another Covid-19 test as well as an EKG, which he showed me. While I was both touched and amused by his trust in my medical acumen, I am not a cardiologist. All I could tell is that it looks like his heartbeat is okay.
We are now at home, isolated, as instructed.
Life is short: support your love always.
Intense Time (Sunday, August 23, 2020)
This entry acknowledges that today is D-1 and counting. Chuck is really being demanding of time and attention. He is okay, just knows that time to live as he has been living is really short.
I chase him around with the vacuum, cut wild overgrowth in the yard, select literally hundreds of photos from my historical files and put them into a Google folder so he can see them in the hospital, and do dozens of other things he wants done. Now. He knows he will not be able to do these things himself for months, so he feels intense urgency to get it all done today, now, immediamente! Subito! Rapido! Sure, my love. What's next?
Life is short: show those you love how you love them.
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Chapter 3 Surgery and Recovery
Parting Courage (Monday, August 24, 2020)
It is Surgery Day!
Last night, I bathed Chuck in special surgical antibacterial soap, then he showered it off and dressed in clean, sanitized clothes. While he was showering, I changed his bed linens so they would be clean and sanitized, too. Like me, he sleeps better on fresh sheets.
I went to wake Chuck at 4 am this morning, but he was already awake. Like me, he had a restless night.
We did our morning routine and loaded up the Jeep with Chuck's essentials to drive to Baltimore. Since he had to be at the hospital by 5:30 am, we left our house at 4:30. The drive was quiet. Chuck didn't want to talk, and I was avoiding saying anything that would cause me to burst into tears. I must be strong for the courageous man I love.
As ordered by his doctor so he could be as well-hydrated before surgery, he diligently drank Gatorade on the way there.
With little traffic, even in downtown Baltimore, we arrived at the Weinberg Building of Johns Hopkins Hospital in only 45 minutes. I had planned on an hour. Better early than late. That's me – hurry up to wait.
I have to say, Chuck got really quiet when he saw the sign at the building: "Sidney Kimmel Comprehensive Cancer Center."
On entry to the lobby, Chuck's name was checked off a list, and as his escort, I was screened for Covid-19. They appreciated that I showed my negative test result, but they still had to check my temperature and go through all those questions that by now are routine. We then were directed to the elevator to Surgical Admissions on the 4th floor. Chuck was checked in again, and they took all my contact information and promised they would call me every two hours with updates. But the Admissions clerk was clear, "This is where you say goodbye."
That sounded so final. I began to tear up. She handed me a tissue and assured me that they would take good care of him. I have to say, all the hospital representatives with whom I have spoken have been very compassionate. I took Chuck into the hallway where we could have some privacy. I hugged him HARD. He hugged me back. Because of the damn mask requirements, we couldn't kiss. I told him once again how very much I love him. He said the same to me. Then he walked back to the area the receptionist had indicated for his entry to the surgery process.
I left sniffling, but steady. By the time I got to our Jeep, I was composed. Chuck WILL get through this; I have faith. And I know from the many ways my circle has been caring for me, I'll be okay.
The surgery began at 7:50 am. The surgery averages six hours. Let's pray for no complications and a comfortable recovery.
Updates
8:04 am: I got a call to tell me that surgery has begun. The surgeon spoke so I could hear her voice: "Looks good, let's proceed." The anesthesia is working okay. There are three surgeons working today, plus two residents and four nurses.
10:28 am: Surgery is going well. Chuck is tolerating the procedure okay.
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11:21 am: The suspected tumor has been removed and sent to Pathology for full study. Pathology reported that the margins of the remaining areas of the colon are clear. Reconstruction of the colon has begun.
2:40 pm: Chuck's lead surgeon called me directly, and we talked for about 15 minutes. The surgery was completed at 1:40 pm. Chuck is now out of Recovery and in the ICU. He is very sleepy, so I cannot speak with him yet. The surgeon gave me the direct number of his assigned nurse and encouraged me to call the ICU after 6 pm tonight.
The bad news is that it was definitely a cancer of the bile ducts. The good news is that Pathology confirmed during surgery that there is no evidence of any cancer in the margins of the area where the surgeon removed the tumor. The surgeon removed 1/4 of his pancreas, but she said his pancreas was very healthy, so while time will tell, he may continue to produce his own insulin and not become diabetic, at least not right away.
The unfortunate thing about a healthy pancreas is that it tends to "leak" more than an unhealthy one. Leakage at the point of reconnection with the colon is common. How long the leakage continues, and the volume of leakage, will determine how long the drain must remain. The drain is essentially a tube that comes out of Chuck's abdomen so liquids can drain out.
The Whipple procedure also included removal of the gall bladder, lymph nodes in the surrounding area, and the duodenum (the upper part of the colon). All came out "clean." The surgeon told me that due to Chuck's overall good health, she was able to close the abdomen with minimal suturing. The sutures naturally dissolve, so unlike what one may expect, there will not be a need to return to have stitches removed. She will see him again during rounds tomorrow afternoon; she promised to Skype me so I can listen and determine for myself how well Chuck is doing and find out then whether he will have to remain in the ICU for another night.
I am relieved! Now, I’ll call my sisters, as promised. Then I’ll take a nap. I did not sleep much last night, and I am really tired!
6:15 pm: I called the number I was given for the ICU nurse. It was answered, then disconnected. Through the graces of Google, I found the general number for the Weinberg Building ICU and reached the nurses on the desk. Chuck’s primary nurse took my call and told me that he was still very drowsy and under the influence of Dilaudid (a powerful narcotic) for the pain. While we both know the dangers of opioids and prefer to avoid them, there are times when they are necessary, such as after the invasive surgery Chuck had.
Because Chuck was not able to talk, I listened to a thorough update about how he is doing. Since he is doing well, considering what he went through, the nurse suggested I call back early in the morning. They start to arouse the patients at 5 am. They intend to get Chuck out of bed and make him walk by 10 am tomorrow. I will call early and often.
Life is short: have courage to show strength for the one you love. My life, my soul, my loving husband.
From the ICU (Tuesday morning, August 25, 2020)
Yeah, I really crashed last night. I went to bed at 7:30 and slept until the phone rang at 6 am! Who was calling? CHUCK!
Here are updates as today progresses...
6:40 am: Within 40 minutes, Chuck had called me three times. Each call lasted only a few minutes. He was complaining, which is a good sign. His throat is sore from the tubes they used for anesthesia. He was complaining that "no one will help me!" He had asked for throat spray, but so far, he hasn't gotten it.
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During our brief, mostly one-sided (from Chuck) conversations, I learned that they got him out of bed at 5:45 this morning, and he is in a chair. He has two IVs, probably one for hydration and one for medications such as drugs for the pain and antibiotics. He also has a PCA (patient-controlled analgesia) device so he can control administration of Dilaudid, the opioid for the pain. He said that he is using it "a little." When I asked what his level of pain was on a scale of 1 to 10, he said "five." I believe him. Chuck has a high tolerance of pain, so if it's a five, the pain must be rather severe, for him.
During latest conversation, he said, "They told me they will move me upstairs today." I assume, then, that his recovery is going well enough that he can be moved into a regular private room and not have to be in the ICU for another night. I consider this very good news.
After we spoke, I called the ICU directly. By the time I reached a nurse, she told me, "I just came out of Mr. Angelucci's room. I gave him some throat spray, as well as took his vitals and some blood for more tests." The report of his vitals is good, though his blood pressure is rather high. She acknowledged that his BP was high because he was upset. She also said that the Dilaudid also contributes to an elevated BP.
Knowing a nurse can't order tests, I asked to speak with the on-call physician. He was right there. I explained that Chuck has a history of elevated levels of cortisol, a residual effect of PTLDS (Post-Treatment Lyme Disease Syndrome.) Elevated levels of cortisol contribute to agitation and general crankiness, as well as elevated BP. The doctor said that he would order a cortisol check "stat," and if necessary, administer an acceptable drug to treat it. Then I went through his drug history, including all the drugs that have been used to treat elevated cortisol levels. Once again, I had to advise against the usual "go-to" drug for that – Gabapentin (Neurontin). Chuck has had bad reactions to that, including hallucinations. I’d feel better if I could be there to deal with such issues directly, in real time, in person. Being limited by the Covid restrictions means I get information late and second-hand. It was fortunate that the on-call physician was readily available and willing to listen to me. We avoided a potential catastrophe!
That's what I do... bring his complicated health history into the equation.
8:40 am: Chuck called just to say hi. He said that he feels slightly better, though he has what he calls a ball of phlegm in his throat. Likely it is a residual inflammatory effect of the tubes used for anesthesia. He also complained about being given local anesthetics such as nerve blocks for the surgical area. He doesn't like them. However, we were told during the pre- surgical class that they would be used, and they are far better than opioids.
He told me, "They'll get me up to walk at 9 am." I look forward to the report of this first effort of movement. He is also looking forward to moving on his own accord. But my heart breaks... when Chuck had his left hip replaced in 2005, I was the one who walked with him, to get him up and moving. I so want to be there... I could cry.
10:15 am: Chuck called to let me know he walked a full circuit around the ICU. He said, "It wasn't too painful." But the walk wore him out, so he got back into bed and plans to take a nap.
12:15 pm: We had the longest chat yet! Chuck is doing okay, considering all that has happened. The pain is subsiding somewhat. Because Dilaudid caused some hallucinations (that he just told me about), he is not using the PCA pump. He says the pain feels like soreness from doing a series of stomach crunch exercises, and not much more.
Chuck was more interested in what's going on at home, such as the mail and the ad for our favorite grocery store. He continued to advise me a little bit about "tweaks" to my investments based on what he sees coming in the economy due to factors related to politics. His prescient financial forecasting has been great and helped us avoid losses due to the downturn in the economy due to the poor U.S. response to the pandemic.
3:00 to 6:00 pm: Chuck was transitioned to a regular private room.
Life is short: listen to those you love and ADVOCATE from afar!
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Transition (Tuesday afternoon, August 25, 2020)
Chuck did so well in his recovery on Tuesday that he has been moved to a regular private room. So as of 2:30 pm Tuesday, Chuck's transition began to be less intrusive and a bit more comfortable. His ICU nurse "pocket dialed" me when the move was made. For about 10 minutes, I could hear the conversation of hospital staff moving him, with encouraging words and instructions. Soon after the nurse realized the line was open and clicked off, the phone rang again. This time it was Chuck.
He asked me again how to identify a WiFi signal. He found it and logged on, and a few minutes later, we were connected by Skype.
We remained connected via Skype for THREE FULL HOURS! I observed techs, his primary nurse, and eventually his lead surgeon visit, speak with him (and me), and examine him. They took his vitals and blood sugar readings, checked the surgical drains, etc., etc. A cool thing about using Skype during visits by medical professionals is that they talked to me as much as they spoke with Chuck. I could ask questions, and they answered for both of us. That's how Chuck and I usually operate – I ask the questions he doesn't think of, take notes, and cover all the bases. The other cool thing was that about half of my Skype with Chuck was just "being there." We didn't say anything, but it was almost as if I were in the room with him. I still can't hold his hand, tickle his beard, or help directly such as by finding him an extra pillow, but at least it was better than random 3-minute telephone calls.
Chuck still has inflammation and perhaps some leakage from abrasion where the tubes were inserted for the anesthesia. He was mighty uncomfortable, with a feeling of a piece of skin or mucus or something that he couldn't expel from his throat. The medical professionals explained that the feeling was common and would abate in a day or two. Meanwhile, they offered more throat spray, throat lozenges, and ice chips. Other than his BP being higher than expected, all else looks good. He is recovering well, which is why he was moved out of ICU into a regular private room in only one day. His BP is being handled by IV medication.
Chuck will remain in the hospital at least five more days, maybe more, depending on how things go. We are grateful that he can stay as long as necessary, and not have artificial problems like health insurance restrictions force him out before he is strong enough. I expect now, as Chuck transitions through stages of recovery, I will not update the journal as I did the other day, with blow-by-blow updates. Just know that things are looking okay for his recovery. I had faith, and my faith is proving its positive worth, though I admit I had dark times as well.
Life is short: "being there" even by Skype is ... well, is not as good as being there in person, but will have to do.
Day 3 (Wednesday, August 26, 2020)
Chuck continues to do well in recovery from surgery. I spoke with him several times by phone this morning, and this afternoon we Skyped when his doctor visited for rounds.
Progress today includes having an endoscopic exam of his throat. He still has that persistent feeling of a "ball of something" caught in his throat. The unfortunate circumstance of having WiFi and a computer meant that he used "Dr. Google" to self-diagnose. He convinced himself that there was a small piece of food still lodged on the wall of his esophagus and it needed to be removed.
The endoscopic exam showed severe localized swelling due to abrasion from the tubes used for anesthesia, but no food particle or anything else was observed. They continue to give him throat spray and lozenges. His doctor said again, “This
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is quite common, and the feeling will subside soon." For Chuck, "soon" isn't soon enough.
The Foley catheter was removed. The doctor said that if he could not urinate by 5 pm, the catheter would have to be put back in. Chuck hates having this device, so he drank a lot of water which worked. No more Foley.
He hated being startled awake to be poked and prodded all night, but overall, it was quieter, and he got more sleep than the night before in the ICU. I can see on his electronic medical record that they took blood 10 times in 24 hours. Wow... I'd just faint and be over with it. Happily, all of his test results show "normal" for everything tested, including blood sugars. We are getting hopeful that the surgery did not cause him to become an instant diabetic.
He now weighs 165 pounds, which isn't as bad as he was fearing. However, we were told to expect more weight loss once he comes home, as his body adjusts to a new way of absorbing nutrients.
Chuck has been provided a spirometer, which he is faithfully using. It is a device that he breathes into to cause a bubble to rise. He has to blow into it hard enough to get the bubble to the top of the tube at least 10 times an hour. This is required to keep his lungs clear, to prevent pneumonia.
Chuck also has a "wound vac." This is a device attached under the bandages over his incision that literally sucks away anything that may ooze out of the wound. We were told during presurgical "training" that before this device was invented, 40% of incisions would get infected because the incision leakage, which is natural, is a hotbed for germ growth. The wound vac keeps it dry and much less likely to get infected (8% infection rate compared with 40% is pretty good).
We talked about a lot of things, including what the doctor described to me about his surgery. He did not know what was done, how much or how little of his pancreas was removed, that no part of his stomach was removed, and that the margins were clear on first pathology review so no more additional surgical removal of parts of his stomach, intestines, and pancreas was required. He cringed when I told him that cancer was confirmed, which justified this procedure in the first place.
He waffles from resignation to "just my fate/my bad luck" to being a bit more positive. He and I talked a lot about travel he wants to do next year when we can both as his recovery allows and after we can get an effective vaccine for Covid-19. Thinking about travel is positive, and it is great that he is not dwelling on the "set Rocky up for a future life without me" idea. Another positive indicator is that he wants to get plastic surgery to deal with the surgical scar. He showed me the incision, and it was really long – about ten inches. He feels that if he can return to looking "more normal in a bathing suit," then overall he will feel like the man he wants to be – for our future.
We ended our Skype call after an hour, when a nurse and physical therapist came to get him up and walking. He still can't get up on his own quite yet, but I envision he will do that by himself as soon as the IV is removed, in the next day or two. He called me 45 minutes later to say that he walked three times around the unit under his own power. He admitted it made him very tired, so I expect now he is taking a well-earned nap. Later tonight, he will watch Netflix on his computer. He has lined up a lot of things he wants to watch.
Life is short: love shows in smiles, many of them today!
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Day 4, uggghhh (Thursday, August 27, 2020)
Chuck's physical recovery seems to be progressing well. However, his mental recovery has taken a turn for the worse. Apparently the hospital staff may have been very busy with other patients, so Chuck was not attended to as frequently as he had been before. His IV ran out and alarmed with a loud screech for over an hour. That bothered Chuck a lot. He was left in bed and not helped to walk and was given warm liquids for a diet. He is one unhappy camper.
His GERD has returned, which makes him feel more uncomfortable. He says the medicine they gave him for GERD doesn't work. My niece, a RN in a Baltimore Hospital, confirmed that the timing of when to give the medicine in relation to meals is important, which I think is being ignored. She also gave me some other excellent advice on how to help Chuck during his current emotional crisis.
At 4 pm, a physical therapist came to walk with Chuck. He could wear his regular sneakers and not use a walker, so he felt more human. That relaxed him somewhat, so his BP returned to normal. But he is still convinced that he has thoroughly analyzed his situation and the fatalistic talk has returned. That is very distressing. I can't distract him with thoughts of travel to fulfill his bucket list.
I thank my big sister for listening to me vent. I have faith... I really do. Chuck will come home to me, and I will do all in my power to help him heal, physically and mentally. It's what I do. I am rather sad... but I am advocating like a good husband should and does. At 6:45, Chuck’s doctor finally did rounds. I spoke with her and Chuck via Skype. She ordered some tests that my niece recommended. We'll see what may be contributing to Chuck's mental state.
Life is short: love your spouse like no other.
Friday Morning (Friday, August 28, 2020)
I spoke with Chuck three times this morning before 7:30 am. He had a more restful night, since they quit waking him up to see if he was sleeping.
Since his blood pressure returned to normal after yesterday's walk and treatment, they let him sleep and only checked vitals once during the night. He sounded better. He also said that he was informed by the Chief Resident that he probably will be discharged this weekend. Yay! His physical healing is progressing well. We will learn more as today goes on. We know that weekend hospital care is weaker.
However, unfortunately, the fatalistic thoughts persist. He still insists, "I am an analyst, it's time to prepare for in-home end-of-life care." The death of a patient in another room on his floor yesterday sent him into a tizzy. "I'm not going to die in a hospital! I want to die at home!"
I will try hard to get him to talk to a trained professional. We'll find one on our own, because this is an area in which Hopkins does not have expertise. I know a few people, including a really top-notch professional who is great at these matters.
For now, at 8 am, I am going outside to my backyard garden to meditate.
Life is short: logically advocate for your love's entire health, both physical and mental.
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Better Day (Friday, August 28, 2020)
Chuck had a better day today. After we spoke early this morning, he went quiet while hospital personnel were tending to him. He had more tests, with good results. He is healing well. They removed the "wound vac" and dressing over his incision. He showed me via Skype what it looked like, and it looks much better than I expected.
A physical therapist took him for a walk while staff changed the bed linens and cleaned the room. He practiced navigating stairs and said it didn't hurt if he moved slowly. He is not in any race to get anywhere.
I was Skyped into three meetings with hospital staff and his lead physician. The good news is that it looks like he may be discharged on Sunday, or Monday at the latest, barring any complications. I met by Skype with the Discharge Coordinator who, confusingly, is different from the Nursing Discharge Coordinator. Each had differing information, so I clarified everything with the primary doctor in charge of his care. I also got approval for a visitor waiver, so when he is discharged, I can be there with him and get all the discharge information, so I can care for him when he gets home. Finally, a home nursing care company representative called to coordinate in-home nursing care if Chuck is released with drains.
His doctor said that she definitely would remove one drain tomorrow, and if that looks good, she may remove the remaining drain on Sunday, before discharge. If that happens, then we won't need in-home nursing care.
As I was ending this evening's Skype with Chuck, someone came in to give him an EKG. I watched... his big ol' heart is beating well. Sinus rhythm always looks good. I am happy with the progress, as is Chuck. He's still in the doldrums about life expectancy, but we'll continue to deal with that.
Better day today than yesterday, for sure.
Life is short: caregiving is a calling. My calling. For my beloved, (gently) huggable husband.
Now Waiting (Saturday, August 29, 2020)
Chuck has been quiet today. During the past week, he has called or Skyped me six to ten times each day. Today, when I didn't hear from him by 9 am, I called him. As I sort of expected, he was grumpy. But that's a sign of healing. He complained about the usual things: ice in his water (he hates ice), calling for a nurse and waiting an hour for attention, nothing brought to him to eat, and how warm the room feels to him.
Yesterday we were led to believe that he would have one drain "pulled" today. During his second, and probably last call of the day today, he said that no one was there to do that procedure, so it wasn't going to happen. He was disappointed, as was I. But so it goes ... being overloaded with patient care, especially on weekends in a hospital, is legend. Not folklore.
I checked his electronic medical record. All test results are available to me, and all of them look good! Especially important is a negligible reading of amylase. This is an enzyme that is produced naturally in the pancreas, and if it appears in a large amount in the drain fluid, it means that the connection of the pancreas to the colon (as done in a Whipple procedure) is leaking. When the surgeon explained that suturing the remaining part of the pancreas is like sewing a stick of butter, we understood that leakage is a real possibility, and leakage is bad. If there were leakage, then one or both drains would have to remain in place for a week or two after discharge. But with a negligible reading of amylase, which is a great sign, I assume the doctor will remove both drains tomorrow (Sunday), when she said she would be back in the hospital.
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By 3:30 pm, I was growing impatient and was really really missing him, so I decided to call him. Just at that moment, the phone rang. He had called me to rant. "NO ONE DID A THING! No food, no drain removed, no nothing!"
They must have heard him out at the nurse's station, because as we were talking, someone came in with water (with ice again), a cup of yogurt, and cream of wheat. Cream of wheat at 3:30 in the afternoon? Chuck asked them to take it away. He hates the stuff anyway. They said that they'd bring him some soup. We'll see if that happens. “Probably Cream of Crud, the house specialty,” I remarked, and was pleased to hear Chuck actually laugh. I can't wait to prepare food for Chuck again. I love doing that, and he appreciates it. It's my way of spoiling him, as he spoils me so much with his loving care and attention.
Today, Saturday, has been a long waiting day. We will see what tomorrow brings. We are hopeful for discharge, but we don't know if the surgeon will remove the drains, or how late that procedure may be done. If it's late in the day when she removes the drains, they'll probably make him stay in the hospital one more night because they require a minimum of three hours for a "complex" discharge.
Life is short: be patient while waiting and lonely for your love.
Pazienza, Paciencia, Răbdare, Patientia, υπομονή (Sunday, August 30, 2020)
All these words mean the same thing (explained below). Who knew that I would be calling on the depth of my faith and languages learned to maintain a semblance of peace in my heart today?
Chuck called about noon to say that two doctors (probably residents) came in this morning and said that the result from his EKG and a test for magnesium last night indicated something wrong. He was hooked up again to an IV and given a “bag of something” (Chuck’s words). I can see his test results, but only from yesterday and days before. I can't see anything really off, but I am not a medical doctor, only an old sociologist doctor who does not have the same knowledge or skill.
3:30 pm update: Chuck called to say that a resident removed both drains. So now all we're dealing with is this IV situation. I said yesterday, "barring complications," it looked like the surgical drains would be removed today and we were hoping for discharge. Apparently, even with the drains removed, the discharge will not happen. Not with a new IV hookup and a different, unexpected, medical situation.
After that call, I walked into my back yard to sit in my meditation garden to rebuild, regain, and renew my faith, optimism, and most of all my pazienza, paciencia, răbdare, patientia, and υπομονή. All these words mean "patience" in, respectively, Italian, Spanish, Romanian, Latin, and Greek. All languages I have studied, spoken, and worked in during my lifetime and career.
Actually, I like the Turkish best of all: sabir. It's shorter, and carries a connotation of hope, too.
Life is short: hope and patience are eternal.
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Discharge Day – Not? (Monday, August 31, 2020)
My too-hopeful, written-too-early entry:
We finally spoke with his surgeon (me via Skype) yesterday afternoon. She explained that they wanted to take every precaution regarding the low reading of magnesium, so that's why she authorized an IV with this important mineral for heart health. During that discussion, she also said that word we've been waiting for: "Discharge."
Chuck is all too eager to come home. I am all too eager to have him home. We are aiming at discharge about 1 pm today. The last time I was home alone without my beloved husband was when he spent eight weeks caring for his mother in Pittsburgh after a she had a medical crisis from August to Skyping with the Surgeon September 2015. I sure miss him – my bundle of crankiness and irritability! He can bark-bark-bark all he wants.
I am so looking forward to cooking for him, caring for him, and doing his share of the chores for a while. Walking-walking-walking with him, too! Just as after he returned home from having his hip replaced in 2005, our "secret weapon," Flurry-the-Coach, will sit on his shoulder and bark, "Walk! 20 times around! Walk!" (anybody guess who provides Flurry's voice?) I'll shower smiles, kindness, and caring until my patience hurts (an inside joke among those who know me the best).
Since both surgical drains were removed yesterday, Chuck will not need to have in-home nursing care. Yay! One less thing to worry about. He will have only one follow-up visit with his surgeon, in two weeks. That's when she will have the full pathology report from the specimens she provided during surgery. We will then find out what kind of cancer it was, its stage, and whether a referral to an oncologist will be required. Flurry-the-Coach in 2005 after hip surgery We are both assuming that an oncology referral will happen. The oncologist will need to have tests run to know more about any potential cancer situation, and whether chemotherapy will or will not be required. At a minimum, an oncologist will need to order tests on a periodic basis, so Chuck can be "followed" and provided with appropriate care. However, we were told that a visit with an oncologist would not be right away. The surgeon says that Chuck will need at least six to eight weeks to continue recovery and healing before that next step.
Yippi-de-do-dah! I get to bring Chuck HOME today!
Life is short: showering love unto the hubster until my patience hurts.
Spoke Too Soon (Monday afternoon, August 31, 2020)
1:40 pm Monday and holding...
We thought Chuck was going to be discharged today. However, he was sent for a full echocardiogram at 1:00 this afternoon, as I can see on his electronic medical record. Chuck had told me that they were going to give him another EKG, which they can do in the room, but that is not the same as an echo done in the cardiac lab, which is in another building.
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Results of his tests for magnesium and Troponin show elevated levels that indicate current or past heart damage. Chuck’s heart may have been damaged during surgery a week ago from the stress it endured during the long procedure. That might be what is showing up in the cardiac tests they are doing. Meanwhile, I am waiting at home for more news. I can't reach anyone in the hospital to get more information. Arrrggghhhh...I know I have "legendary" patience, but the waiting is killing me!
4:10 pm update: no news. I used to like crickets. Not so much now. Chuck has called to gripe, "No news. They aren't telling me a thing!" I cannot wait to speak with his lead surgeon via Skype on rounds this afternoon. I have a bucketload of questions!
6:00 pm update: Chuck called me, and we Skyped again with his lead surgeon. She explained that the echocardiogram showed everything normal with his heart. They were being ultra-cautious, given the stress his heart has been through with the surgery. However, there is something else: the doctor is concerned now about an elevated (and unexpected) increase in Chuck’s white cell count. That may be indicative of an infection deep inside the abdomen. She said that she ordered a CT scan of his abdomen to see if there is anything going on that could be causing this white cell spike.
The CT was ordered this morning, but the hospital CT facilities are overloaded. She does not know when he will be wheeled off to one of the many CT machines there within the Hopkins Hospital System. She expects they will get the CT done later today, or by tomorrow morning at the latest. Then she will speak with us again about the findings and go from there. While Chuck wants to come home as much as I want him home, he understands the importance of making sure everything is okay. When he comes home, we want him to stay home, not have to rush back into an ER.
After the doctor left, we continued our Skype conversation. I saw him chewing. He said that he was given a chicken breast and ate all of it. He said that it tasted awful, but was better than just yogurt, which is all he has been fed these last several days. He is so much looking forward to me cooking for him again. Me too! As for me, to be honest, with the weird waiting all day today, I had forgotten to eat. By 5 pm, I had a pounding headache. I cooked spaghetti and meatballs. Comfort food!
So the waiting continues. Let's hope that the CT doesn't reveal any more major issues, and he can be discharged soon.
Life is short: keeping the faith...
Complication (Tuesday, September 1, 2020)
I don't use profanity, but I'm close. Chuck called at 8 am today to say that he finally had the CT his surgeon ordered yesterday. At 2 am, the middle of the night!
The results show what Chuck called a blockage in the digestive tract. He was told that he will be put back on IV nutrition and not given any food. That news didn't sit well; he is hungry! Now, more waiting to find out what they're going to do about it.
I know it is better for him to be in a good hospital and get this matter fixed before he comes home rather than have something happen that will require a return through an emergency room. That is okay to say on one level, but my heart is breaking on another. I can't be there to advocate, listen, and just hold his hand.
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11:15 am update: Chuck Skyped me into a visit with his lead surgeon. As I thought, she got a consultation with a GI Specialist as well as the other doctors who compose the team she works with. The CT showed inflammation of the site where she cut a piece of the small intestine to use to reconstruct the abdomen. It is not a blockage, but mild inflammation that should resolve itself over time. I asked her if there might be something else similar to the blockage from the weekend of August 16/17 elsewhere in the small intestine. She said that the CT showed the small intestine to be normal. He may have had a mild infection, but with all the antibiotics he has had with the surgery, whatever it was isn't there now.
The good news is that Chuck can resume a regular diet. I'm glad, because during the Skype call with me, he re-earned the title of "Mr. SuperDooper Grumpypants.” I wish I could teach him that you can catch more flies with honey than vinegar – the way he barked at his nurse didn't win any favor. He barked at me, too, but I let it roll off my shoulders. It's better that he barks at me because he knows I know it is his way of letting off steam. All to be expected. I love him with all of my heart, even if his situation makes him grumpy. Again, it’s not my husband – it is the uncomfortable and information- deprived situation that he is facing courageously.
The doctor said that if he has a calm night and there are no more complications, she will consider discharge tomorrow. With as difficult and moody as Chuck is, I think they'll be happy to have him leave. I'll be happy to have him home! Trust me, I know how to take care of Mr. McGrumpy Grumpypants!
Life is short: love your grumpy spouse – he's the only one ya got!
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Chapter 4 Recovery from Surgery
Home (Wednesday, September 2, 2020)
Chuck was discharged today. I went to pick him up about 11:15 am. The hospital discharge process, including paying a ransom for generic drugs and having them checked five times by five different people, took an hour and a half. I had to wait in the hospital lobby the whole time despite having been approved a few days previously for a "visitor waiver" that never materialized. More items for my long list of grievances. Chuck has many, many more to add – like that CT at two o’clock in the morning!
Finally, Chuck was wheeled back to my loving arms. He looked pale, weak, and feeble, but that didn’t stop him from insisting on standing up (with some help) and giving me a hug, right there in the hospital lobby. I teared up, as did he. He said, “I love you,” and in return, I said, “a whole much.” (This is our love phrase, “I love you a whole much.” He wore this phrase on a dog tag he kept on a chain around his neck.)
I wheeled him to our Jeep, assisted him getting into it, returned the chair to the elevator lobby, then got in the Jeep to drive home.
Chuck said, “wait a sec. Is it you? Is it really you?” He began to cry. It was hard for me to remain composed. I held his hand until he said, “let’s get out of here!” Off we went… home.
I am settling him in at home. He was hungry, so he ate a freshly made five-flour gluten-free waffle. He ate every last bit of it. He said, “I’ve missed your home-cooked meals so much. Thank you.”
He can walk, though slowly. For now, he just wants to sit in the kitchen and admire the view of our back yard, and watch the squirrels dance a welcome-home jig up in the trees. I’m happy to sit there with him, though I don’t watch the squirrels. I stare at him. I admire that view!
HE IS HOME IN MY ARMS! YAY!
Life is short: love your spouse like no other.
Adjusting (Thursday, September 3, 2020)
As we both expected, the adjustment to being home is a journey unto itself. Chuck accepts all my offers of help, and he learned from me when I explained that he should give me instructions on how to help him best.
We are learning that he mostly knows what he can and cannot do and he is not being too bold about trying to return to his usual level of activity. There are some things he craves, like blueberry-anything. I am indulging him with blueberry yogurt, blueberry smoothies, and fresh blueberries on a waffle. It seems like he can't eat homemade chicken soup yet. I made a fresh batch for him yesterday and gave him a small bowl of the broth, but his body rejected it. We’re both learning. I have cleaned up after some incidents that he can't control just yet, bathed him, and am feeding him small meals more frequently. I have done more laundry that I expected, but that's cool... Chuck taught me well.
Also, I learned that Chuck can't swallow pills. He needs to take Creon, which is a replacement for the enzymes his pancreas is not producing normally yet, so sprinkling Creon on apple sauce as allowed in written directions on the product label, is becoming routine.
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Mostly, Chuck just wants to sit with me and talk. He really missed having someone he trusts and respects to talk to. He told me story after story about being in the hospital. No matter how good the reputation of a hospital, in-patient care is always a struggle. That’s especially true these days, when the family can't be there with the patient. Chuck thinks the hospital staff love that the Covid-19 rules prevent family being there. That way they don't have to deal with family members making demands. Worse, conflicting reports about lapses in care become a "he said/she said" argument that the patients can’t win. It was a relief for him to be able to share his stories and be believed.
After we had been home an hour yesterday, he looked at me, and tears began to fall. He reached out and squeezed my arm, held my hands, and wept almost uncontrollably. He was so happy to be back home and able to touch and hold me. He said as much... I got teary-eyed too. His love for me is as deep and passionate as mine for him.
Oh well... enough for now. Time to take Chuck for a walk around the family room, dining room, and living room. Round and round we go!
Life is short: when caregiving is a calling, he's all mine to show through actions and deeds how much I care and love him.
Positive Priorities (Friday, September 4, 2020)
Chuck is having problems prioritizing. For example, on the way home from the hospital, he got on an absolute tear about having to clean out the bottom shelf of the hutch in our kitchen. "There are lots of things in there that we will never use! I have to have space for all these pills the hospital gave me!" ugghhh... smile and say, "I love you, Chuck!"
But like an elephant, he would not forget. When we got home from the hospital, instead of settling him in comfortably, I had to waste half an hour emptying out the bottom of the hutch and finding places to hide things that I want to keep and filling a trash bag so Chuck would think I threw everything away. It is a constant game of "hide the keepsakes from Chuck and the trash." ugghhh... smile and say, "I love you, Chuck!"
Yesterday was, well, let's say “uncomfortable.” We spoke with both a nurse and a doctor (at separate times) looking for solutions. Chuck is on a roller coaster of how his bowels are operating. Or not. Or both. Or not. As a wonderful friend who is a former nurse told me that we are in for a prolonged adjustment period. I knew that but didn't realize just how important our stash of old towels would become.
Smile and say, "I love you, Chuck! It's what I do... for better or for worse, in sickness and in health, and in doing laundry more frequently than ever before.
Chuck's balance of medicines needs continuous attention. Some drugs cause problems with ... you know ... and some are essential for healing. He is no longer using the narcotic pain drug because he really is not in much pain that Tylenol can't handle for him. He is dubious about Creon, the pancreas enzyme replacement therapy. He thinks it is causing the diarrhea. No, the constipation. No, the diarrhea. No, the constipation. No, It's the yogurt. No, it's the waffle. No, it's the soup. No, it's the water. ugghhh... smile and say, "I love you, Chuck!"
I am happy to report that he is keeping well-hydrated. He saw the box of IV supplies in the corner that I intentionally left within his line of sight. He knows he must keep hydrated, or else! However, he insists he can't eat (name the food) anymore because it: a) makes him constipated, or b) gives him diarrhea, or c) all of the above, or d) none of the above, or e) some of a and some of b, but not f.
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ugghhh... smile and say, "I love you, Chuck!"
At 3:30 am, I heard him stirring. Yeah, another "Cleanup on Aisle 12!" I was all prepared for that. But Chuck also insisted, "You have to clean off everything from the bedside table, NOW!" He was upset that he couldn't find a bottle of Tylenol by himself, but instead found a now-unusable bottle of acid-relief pills that he had used the week before he went into the hospital. That led to another 20 minutes of moving stuff that he no longer uses into a box, getting him a fresh bottle of water and a new bottle of Tylenol, and clean bed clothes and sheets. I put the soiled items in the washer, helped Chuck back to bed, and stumbled back to bed myself.
Smile and say, "I love you, Chuck!"
This will be my typical day for a while, but I know this is what I signed up for when we said our marriage vows. This is the "for worse" part, but overall, with my love, it will be better.
Life is short: I love you, Chuck! When I say it often enough, he stops grumbling and says with meaning that he loves me too.
No Battle Rhythm (Saturday, September 5, 2020)
As hard as I try, we haven’t found a "battle rhythm" yet. No ordered routine. No routine of any sort.
Chuck did a bit better yesterday, but so far today, not so much. It seems that no matter what we do and discuss with medical providers, Chuck may be among the unfortunate 10% of Whipple surgery patients who cannot reach a balance between diarrhea and constipation. Again, through the night and this morning, he has had had ongoing issues.
He can get himself up from his chair and go to the bathroom to pee. He just can't do it fast enough when #2 happens. He is miserable. You know how a child whines when miserable? Yup, here too. The whining doesn’t annoy me, just makes me very sad, and I can't cry in front of him. I hate it when he is so miserable and no matter what I do, I can't fix it. I can clean him, I can bathe him, I can work with medical providers to adjust treatments and medicines, and I can work with him to give him a variety of foods that don't make either situation worse. But as hard as I try, I can't find a way to smooth out the intestinal imbalance. I have gone to two drug stores already today to try to find him what he thinks will provide comfort and medical staff are okay with, to no avail. I'll keep trying. I won't give up. Doctors/medical staff are not available again until Tuesday due to the Labor Day Holiday except for an urgent emergency, of which this is not a case, despite Chuck's discomfort and protests.
One would think that I – a guy who has been living with Crohn's Disease and IBS (Irritable Bowel Syndrome) all these years – that I would know a thing or two about that and can relate to what he is dealing with and be sympathetic. But my issues, while similar, are not caused by the same thing and are not treated the same way.
Somehow, some way, we will reach that balance and rhythm, but probably not today. Wish me peace as I continue to smile and say, "I am loving you harder than ever." It's what I do.
Life is short: love while cleaning and using air freshener.
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Toil(ets) (Sunday, September 6, 2020)
Another toiling day with Mr. Poopy McPoopster, both in doldrums of spirit and finally releasing... well, what's been backed up.
Unfortunately, Chuck has really gotten on the fatalism track again. "I am an analyst! I know I'll only be here a short time!" And, "Talk to your friend the psychiatrist? Forget it! I know what's going on!" He still is not eating or walking or doing more than surfing his computer with a dour look on his face.
The one thing to keep him happy (and me busy) was to replace the small, outdated toilet in our first-floor powder room. The old toilet was too low and small for Chuck to be able to use. He wanted it replaced with a new, elongated, "comfort-height," self- cleaning Kohler. This would be much easier for him (and me) to use. This new toilet was on sale only at Lowes, whose locations are few and far between around here. And drat the luck, the Lowes closest to us did not have the toilet that Chuck wanted in stock. They sent me to Frederick (30 miles away) to get it.
My mission to find and buy it complete, I returned home and spent the afternoon toiling to remove the old toilet and install the new one. The job went fine. Mr. Poopy McPoopster "inaugurated" it. He really liked it.
Life is short: celebrate small wins and hope for no more "Cleanup on Aisle 12!"
Challenged (Monday, September 7, 2020)
I am facing a challenge that I have never faced before. I am struggling to figure out what to do, if there is anything I can do.
Chuck continues to heal well physically. The incision looks clear and has no redness or discomfort. Chuck says the pain is minimal, and Tylenol handles it. He even uses that sparingly. I check his vitals three times a day, and they are all normal. He can get himself up and walk. He can urinate on his own, though he still has a difficult roller-coaster between constipation and diarrhea.
However, Chuck continues to feel significant mental anguish from the entire hospital experience, and he hasn’t been able to manage the trauma in constructive ways. He is not doing anything self-destructive; he’s not drinking (he doesn’t drink alcohol at all) or misusing drugs. He even had me dispose of the narcotic he was prescribed by dropping it off at our local police station drug drop box. But he is showing many classic symptoms of Post-Traumatic Stress Disorder (PTSD):
* frequent crying for no reason. * brooding and mood swings. He broods a lot. * he has lost his sense of humor. No laughter whatsoever, even at the silliest things I can think of, that in the past, would have made him laugh out loud. * repeated telling of stories about how he was treated (poorly) in the hospital. * negative thoughts – especially the fatalistic, "I'm not going to be here long." * hopelessness about the future. * feeling emotionally numb. * trouble sleeping. * irritability and angry outbursts – seldom, but for no reason. It's not personal. He just yells, "I don't want to!" (walk, eat, sit and talk, or do anything other than brood.)
I knew what we got into at the beginning of our relationship. Chuck has not had any friends other than me, and does not like, or talk to, anyone else. But this is beyond what I am equipped to handle alone. Since Chuck will not admit that he is
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having a mental health issue and refuses to consider professional help, I have decided to get help for myself. I want to learn how I can help Chuck. His trauma is stressing me a lot. I have helped Chuck recover from previous hip replacement surgery, but nothing quite like this. I too feel helpless, have had trouble sleeping, and am feeling emotionally drained.
I have made an appointment with a therapist on the firehouse side of my life, an outstanding professional who deals with PTSD issues. This gentleman will see me soon for an on-line private discussion. I need to prepare mentally for the telemed visit with Chuck's surgeon this coming Friday when we will get the full pathology report and learn what's next, and whether Chuck will be referred to an oncologist. I have already learned that even if Chuck is referred to an oncologist, his appointment would be another six to eight weeks away to give him time to build more strength and continue to recover physically. I also hope the therapist I will see will give me insights on how to help Chuck recover his emotional stability as well.
Life is short: give me strength to support myself, so I can support the man I love.
Tuesday—Loving Harder (Tuesday, September 8, 2020)
Ho hum, here I am on the Tuesday after Chuck was discharged from the hospital six days ago. The situation is still awful, with Chuck's weakened physical state and off-the-rails mental state. The day started on the wrong foot, with Chuck already awake when I rose at 4:30 am. I was up early to try to get some of my own work done before tending to his needs. But Chuck was already crying again, “I can't take Tylenol because no one understands that I can't swallow pills! No one!” I had to set aside my personal feelings and frustration, hold his hand, and just let him rant.
However, I had a one-hour one-on-one session yesterday afternoon with a professional therapist who specializes in trauma and has specific training and credentials with PTSD. His name happens to be Chuck, also. For purposes of this journal, I will call him "Other Chuck," or OC for short. He is helping me learn how to deal with my own stress and has already given me a few tips on how to support my Chuck.
It was damned hard to do it, but I had learned from OC to respond to the early-morning episode by handing Chuck a tissue and walking away. OC had advised me to let him cry, scream, have a tantrum. I did that.
I went into the garage to finish packing my truck for a run to the transfer station to dispose of stuff I cleaned out of the basement storage yesterday. When I returned inside, I found Chuck already in his chair in the family room on the first floor. He can walk and proved so. He did not say anything right then; just glared at me. I gave him a dose of medicine that he has to take one hour before eating. I returned to the kitchen and prepared myself a hot, nutritious breakfast. OC reminded me that I need to eat well myself, and not "survive on bachelor meals" like soup, a quick sandwich, or prepared microwave stuff. I like to cook, and I should cook for myself. I did – I made a ham & cheese omelet, as I like it! English muffin, orange juice, and fresh fruit rounded out the meal.
Chuck went into the bathroom and had his first real bowel movement. He said that the new toilet I installed made a big difference. One small win. I'll take whatever I can get.
I prepared Chuck a breakfast of flax seed meal mixed with applesauce, Creon, and Magnesium citrate, and handed it to him. He got on his computer and found an item that he wanted me to get from the drug store. I wrote it down and left. I went to the transfer station as planned to dispose of a truck-full, then went to the drug store and bought him the product he wanted, along with liquid Tylenol. When I got back home, Chuck insisted that I sit and listen to "a lot of things." I poured him a dose of the liquid Tylenol, and he swallowed it while ranting.
First, he was surprised that he had the applesauce. "Where did that come from?" I explained that I handed it to him, and that he put it down while searching on the drugstore’s website for the product he wanted me to get for him. He forgot about the applesauce and thought somehow it had been left over since yesterday and would not eat it. I explained again I brought it to him just this morning, and that he was distracted and forgot. He reluctantly ate it.
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Next, "That holly has to go." Huh? We have a holly that has grown out of shape near our deck in the back yard. I had planned to have the deck replaced this year but set that project aside when Chuck's health demanded all our attention. This morning, he kept demanding that I have to have the holly removed, or at least agree to have that done ... like, by tomorrow. His sense of priorities has never been well-organized, but this demand was so out of whack, I just smiled and said, "Sure. When the deck gets replaced, the holly will go. Not now. Next year."
He continued to demand that I attend to the holly. My session with OC reminded me that I can stick to my position (if it's rational) and repeat. "Sure. When the deck gets replaced, the holly will go. Not now. Next year." I repeated that about five times before Chuck realized that removing the holly wasn't going to happen today, this week, or any time soon, and stopped ranting about it. So it went, until at 10 am I finally said I had to get some work done. Chuck said, "Fine... no one cares, no one ever listens. I didn't get any sleep for the last two and a half weeks!" and began to cry again.
I handed him a tissue and slowly walked to my home office, shut the door, and wrote this entry in my journal. That is something that OC also recommended – pouring out my heart in writing. So that's partly why I am writing this journal, too. To relieve some of my stress.
It is hard for me to do what OC is recommending. I never walk away when someone is hurting, especially my husband. But I learned that my usual behavior of staying with him when he is so emotional does neither of us any good. When I get stressed, I can’t sleep and my Crohn’s acts up. I can’t have that, so OC is right, “take a time-out” – for both of us.
Life is short: love harder than you've ever loved before... I will not give up. I will NOT let PTSD destroy our marriage. Love hard! Love long!
One Thing (Wednesday, September 9, 2020)
As the surgery recovery s-l-o-w-l-y progresses, I continue to apply lessons that my therapist, OC, taught me. He said, "Pick one thing to work on with Chuck each day, and work on that until completed, then pick another."
On Monday, at my invitation, Chuck began to eat meals with me at the kitchen table, as we used to do. It was great to return to a more normal sense of routine. On Tuesday, he asked for some foods other than yogurt and applesauce. His appetite is returning a little bit. Gluten-free pasta works. Other accomplishments so far have included Chuck managing the return of fairly normal bowel movements, using the new toilet I installed for him.
On the other hand, Chuck did not sleep much at all on Monday night, so Tuesday was rough. Frequent episodes of tears, temperamental outbursts, and no logic made Tuesday just plain hard. So my "one thing" goal for Tuesday became giving him a good night's sleep. His doctor's office has not been much help, but I have other professional and insightful resources with whom I consulted. I finally hit on a simple sleep formula: sleep magnesium + 250 mg acetaminophen + low-dose liquid diphenhydramine (sort of like a children's Tylenol PM), which resulted in Chuck sleeping eleven hours last night! None of these medicines interfere with medicines that he was prescribed on discharge from the hospital.
His mood on awakening this morning was much, much better. He smiled and said thank you often. He dressed himself, which he is proud to be able to do, brushed his teeth, and is pretty much his old independent self, at least as far as mobility is concerned. Today, I made him fresh pasta that he will have for an afternoon meal. That's today's "one thing" – eat more calories. He has lost so much weight, he can enter our house by squeezing under the door!
Things are better today, but there remains a long road to go. OC said that we should expect some good days and more bad days too, but with persistence, time, love, support, and understanding, the good will be more than the bad. I will devise "one things" each day, but create them as I go along, to suit our changing needs.
Chuck must be feeling better, because he smiled when I sang to him a song that my Mom used to sing to me, You Are My Sunshine. I love the Vince Gill / Grand Old Opry version. Life is short: Chuck is my sunshine and makes me happy when skies are gray.
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Today's One Thing (Thursday, September 10, 2020)
Yesterday, Chuck's pain in both feet (that to him feels like gout) returned with severity. His ankles and knees are swollen and painful this morning. We restarted the prescribed gout medicine, colchicine. Being in a lot of pain, and unable to (or unwilling to) walk, is making him generally miserable again. He keeps insisting, "It's the yogurt! It's the applesauce! It's the pasta! It's this... It's that!" Or worse, "I read an article saying that dying cancer cells cause an increase in uric acid."
Well, my love, you're not on chemotherapy, and none of the mild medicines you are taking for digestion after your surgery are lethal to cancer cells. Gout is caused by a build-up of uric acid, which forms crystals in the joints. The crystals are sharp, and cause jabbing pain. There are foods that contain large amounts of purines, which form into uric acid. None of the foods that Chuck is eating is high in purines. I sighed and said to him, "Despite how much you think I countermand you, honestly, I know this – we've dealt with it before. It's nothing you are eating that is causing this."
He could be having gout pain due to dehydration. He will not drink much water (or any other liquid) because he does not want to have to pee frequently. Oh, Jiminy Crickets. To reduce uric acid, you have to flush it out of your system, which means drinking a LOT of water and peeing frequently. What's worse, I ask, “having to pee often or the gout pain?” This should be self-evident, but it's not.
For those unfamiliar with this appropriate Italian word, look it up: testadura. My "one thing" today is to get Chuck to drink more water under the threat of inserting an IV again for hydration. I have it and know how to use it. Chuck knows that too.
Life is short: use whatever means necessary and within my ability to resolve issues.
September 11 (Friday, September 11, 2020)
Today 19 years ago began an intense time for me – and I was in Omaha at a meeting for work. When all airports in the country shut down, I was stuck there. Eventually six of us rented a van and drove 38 hours non-stop back to DC. Then I began working, working, working for five very intense months of 18+ hour days, 7 days a week, with weekly flights to the Red Cross terrorism training center in Pine Bluff, Arkansas, then to NYC for 3 days, then to DC for 2 days, then back to Arkansas. I racked up tens of thousands of airline miles in those five months!
However, it was 22 years ago, in 1998, that September 11 became ingrained in my mind. It was that date, also a Friday, when I had gone to Chuck's apartment in Virginia after work. Earlier in the day, my mom and I had exchanged a joke via email. She was getting good at doing email with me, using her WebTV system that we got for her for Christmas in 1997. As usual, I called Mom to check in after I arrived at Chuck's apartment. When there was no answer, I thought she was in the bathroom. But when I called a half-hour later and there was no answer again, I got worried. I tried to call again and again... no answer.
Being stuck in Virginia during rush hour meant that it would take almost two hours to get to Mom's condo. Not wanting to wait so long, I called my sister who lived closer to Mom. My sister and her husband went to check on Mom, and called me to say, "Mom won't wake up." I knew what that meant. I lost it.
Chuck held me in his arms, stroked my hair, and tried to console a son who had suddenly lost his mother.
Chuck and I had just visited her the Monday before (Labor Day). Chuck and Mom reviewed the plans for our house, which was close to being finished after five months of construction. We were expecting the inspector's final clearance so we could move in within a few weeks.
Chuck and Mom were busy "decorating" our house. Where pieces of furniture would go, what drapes and curtains we would get, what color schemes would work best in certain rooms, and how we would fill the house with our combined rag- tag furnishings, as well as what other pieces we would need.
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Mom pointed to some of her furniture and asked, "Would you take that? How about this? Could you use that, as well?" Without our knowledge, she had already marked furnishings with pieces of tape with names on them, for what she wanted each of her family members to have, knowing what each of us needed or wanted for sentimental reasons. I cherish that memory of September 7, 1998, which is firmly in my mind – seeing Mom and Chuck sitting on the sofa in her den, smiling and laughing, planning and scheming the decorations and furnishings of our new house. They genuinely liked each other.
Chuck drove me to Mom's condo that fateful September 11 evening. I was crushed and felt like a lost little boy all the way on that dreadfully slow Beltway to Mom’s condo in Leisure World. But all the while, Chuck held my hand. He shared fond memories of my mom. Handed me his handkerchief as I sobbed. Always, always showed me how he loved me.
He held me that entire night in his strong loving arms. Yeah, September 11 is a fateful day of memories.
Today at 11 am, we have a telemed appointment with Chuck's lead surgeon, and will get the full pathology report from the cancer removed during his surgery. Today is my day to be strong for Chuck. To hold him, tickle his beard, give him gentle kisses, and always, show him how I love him through actions, words, and deeds. It's what we do. It is how we live our marriage vows.
Life is short: being strong works both ways in a loving marriage.
Love One Day At A Time (Saturday, September 12, 2020)
We received the news of the pathology report from Johns Hopkins. A 2.3 cm cancerous tumor was removed during Chuck's Whipple surgery on August 24. Three lymph nodes also were positive for cancer and were also removed. Twenty other lymph nodes did not have signs of cancer.
However, I was personally devastated when we were told the diagnosis is Stage IIB pancreatic adenocarcinoma, or PDAC for short. This is bad. Real bad; much worse than I expected, but I really didn't know. I am so naïve sometimes. I had my hopes up at the level of imagining the doctor saying, "Since the tumor was resectable, we got it all during surgery, so all you have to do now is have a test to ensure there is no more cancer."
I have to be honest... I set myself up for a huge let-down due to my generally optimistic nature. Chuck, on the other hand, took the news much better than I did. He was expecting a diagnosis of terminal cancer with less than six months to live.
So here we are, in the middle.
Chuck was referred to a medical oncologist at Johns Hopkins whose office had already made an appointment for September 23. We were told that more CTs will be necessary with a frequency of every few months, as well as tests for the CA 19-9 tumor marker in the blood. With chemotherapy, the average life span of someone with this type of frequently recurring cancer is two years, three years at best. This cancer has a high rate of recurrence in the liver or lungs. Chuck agreed that he will undergo chemo, but if tests during or after chemo reveal the cancer has recurred, he will refuse further surgery. I will honor his wishes. As hard as that is for me, I will ensure that his wishes to die comfortably at home are followed when the time comes.
I spent most of yesterday in a fog, awash in jags of tears. I called my Big Sister but couldn't breathe or talk. She just listened... oh gosh, I must have sounded scary and awful.
I explained to Chuck why I was upset. As bad off as he is, he consoled me; comforted me; stood up and held me, scratched my back; kissed me and said, "I love you, cutie-pie Spouse." That just killed me... I lost it over and over again through the afternoon and evening.
I asked Chuck to give me one day to return to calm. Give me one day to emote. One day for me – the rest of Chuck's days will be for him and my joy in having him one more day.
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As challenging as Chuck's mental state has been – it's like that never happened. He wants to try to walk, eat more, keep well-hydrated, get better. He knows that he needs to build his strength before undergoing chemo, which inevitably will weaken him. He began to dream again of fulfilling a bucket-list visit to Canada and explained the itinerary he planned. He wants to do this trip in mid-May through June, when Brood X of the cicada invasion starts where we live. He wants to be anywhere other than here when those insects emerge and are so loud. This trip gives Chuck something to aim for: to get through chemo and regain strength to travel. Pandemic be darned.
This journal will migrate toward a more positive, I've got my love another day, outlook. No more griping about small transgressions... I have Chuck today to love, hold, cherish, and honor.
Life is short: cherish each minute you have with your life's love.
A Day of Stark Contrasts (Sunday, September 13, 2020)
Friday, September 11, was a day of stark contrasts.
I wrote a journal entry that morning remembering my mom who died unexpectedly on that date in 1998. It is also the date that we remember from 2001, when our country suffered attacks by terrorists and 2,977 people were killed. We added another traumatic September 11 memory on Friday, when Chuck and I received the results of the pathology study of the tumor and lymph nodes removed during surgery on August 24. We learned that Chuck has a the most severe form of pancreatic cancer (PDAC) and its stage (IIB), and that while it can be treated with chemotherapy, it recurs at a high rate. When it recurs with tumors in the liver or lungs, there is not much that can be done to preserve a life of any kind of quality or future. This was the worst part of that day.
But there were good things that happened on Friday, too.
First thing that morning, I was honored for my service in the community by the community. I applied all of my diplomatic skills to bring volunteers and paid employees together. Apparently, it worked.
Another good thing that happened on Friday is that I received the 2020 Career Excellence Award from my professional association – the International Association of Emergency Managers – in the mail. This award is a rather big deal, as it recognizes contributions to the emergency management profession of the entire country over the entirety of one's career. I was nominated by a former mentee with whom I worked long ago in the American Red Cross. He is now Assistant Director of Emergency Management of a county in Ohio.
I also celebrate Friday because:
• Chuck pooped normally, twice! Yay! • I was able to make potato gnocchi, and Chuck loved it. I have been reluctant to make gnocchi because memories of Chuck’s father's perfect gnocchi set such a high standard in Chuck’s mind that I couldn't come close. I tried before and was told that I made boiled rocks. However, Friday was different: under Chef Guido's guidance (all in Italian, s'intende!), light, fluffy, and filling gnocchi happened! Chuck loved it so much, he ate it for two meals! Life is short: remember the wins, too.
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Another Day To Love (Monday, September 14, 2020)
Yay, it's Monday, another day to love my Chuck.
We had a fairly quiet weekend. I prepared fresh foods for my love that he ate with gusto. He's still not eating any protein, so that's my "one thing" to continue working on.
I saw got my hair cut and rode my Harley to get there. I haven't ridden in a long, long time. I am keeping safe to ensure nothing happens to me while I need to care for Chuck.
Chuck was mostly calm all weekend with only one PTSD incident that sent him soaring in a wash of tears and screams of pure terror. Frightening, but as I have been informed, to be expected. The hospital-caused PTSD won't go away soon. I handed him a tissue and slowly walked away until he calmed down. Then we resumed a more usual pattern of behavior.
Chuck and I talked almost all weekend, and have made these plans: • We will go on some more photo shoots near home and at the Blackwater Wildlife Refuge before Chuck undergoes chemo. Chuck will enjoy a much-needed break by getting out of the house and have a change of scenery. • I will join a support group for caregivers of cancer patients. I am getting references and will try several to select one that will be the best fit for me. The last thing I want is a support group like the one I went to for Lyme Disease caregivers. That was a mucky mess of supporters of divorcing the spouse with the disease! No way that's me! • I will take a trip after Chuck's death to get away and clear my head. I will go to my favorite place in my heart, la Isla del Encanto, Puerto Rico, and spend significant time there with my close friends who live there. • Chuck wants his ashes scattered in two places: into a garden with plants he loves (hellebore and ferns) in our back yard by transforming the pond I built for him to a raised-bed garden, and also in the Caribbean Sea off the west coast of Puerto Rico which is, as he said, “the only ocean I can swim in.” He does not want a funeral or memorial service. He is adamant about that. • Chuck still insists, "Don't tell anyone!" I can't fight it; don't quite know what to do other than support his wishes. Well, not much else to write about today. I will make some more of the fresh pasta that Chuck loves.
Life is short: celebrate another day to love!
A Big Thing (Wednesday, September 16, 2020)
Last night as I was helping Chuck get ready for bed, he went into the bathroom to brush his teeth. He has not groomed himself or bathed in three weeks. When he glanced at himself in the mirror, he was shocked to see how much more weight he has lost. He started crying, and exclaimed, "I look as old as my father!" Honestly, he looks quite gaunt and bony.
I have been asking him daily if I can help him bathe and groom himself, but he has not had much interest or energy. Clean clothes were "good enough." But that figure he saw reflected in the mirror motivated him to find the energy to let me bathe him this morning. I had it all set up in our basement bathroom which I built years ago to have sufficient space for future needs. It includes a low-threshold shower with controllable heads, a shower chair, and a mirrored low sink that Chuck used to shave and groom his beard while sitting in the large and ample shower stall. Then I bathed him from head to each of his wittle toes. Carefully, slowly, gently, I had the pleasure of caring for the man I love.
The steristrips from the surgery fell off as we were told to expect. I used special soap to clean the skin around the incision very gently. The long incision looks good and is healing well. And now no more bandages, either! Chuck wept again when we were done. His tears of joy brought on tears of my own. He reached out and hugged me with as much strength as he had left and thanked me. He feels (and smells) so much better, and more human!
Life is short: celebrate things you don't really think about ... until you can't do them for yourself.
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Causin' Commotion In My Soul (Thursday, September 17, 2020)
I am a lyrical spiritualist. I have no other words for it.
I hear a song with meaningful lyrics and adopt them. The song becomes an earworm and I sing it all day long. This drives Chuck nuts sometimes.
As Chuck is feeling that his life is ending and that he looks so bad, my "one thing" every day now is to counter that. I do that by frequently looking deeply into his eyes and saying, "I love you." By calling him by one of the many pet names I have for him. By complimenting him on his beautiful blue eyes, his soul, his endearing and honest love. I show Chuck how much I love him and that he is important by preparing foods for him that I know he will love, such as gnocchi, pasta, avocado mash, and fruit crumble.
And I sing with joy: while cooking, while serving my love the foods he craves, while running endless errands, doing endless laundry, chasing dust bunnies, and bathing, washing, and gently caring however I can. I love to love my love!
So yeah, my positive nature can't be avoided. I love Chuck and sing to show it every minute of every day that I am blessed to share with the love-of-my-life.
So here goes! Sing along with me!
It's So Nice To Be With You, by one-hit wonder Gallery (1972)
Oh, it's so nice to be with you I love all the things ya say and do And it's so nice to hear you say You're gonna please me in every way Honey, I got the notion You're causin' commotion in my soul
Baby, you and me have got somethin' that's real I know it's gonna last a lifetime ya better believe it, guy
At night I call your name Darkness fills my room, I'm only dreamin' About the time I'm gonna be with you
Oh, it's so nice to be with you I love all the things ya say and do And it's so nice to hear you say You're gonna please me in every way
Honey, I got the notion You're causin' commotion in my soul
When I'm feelin' down You're there to pick me up and help me to carry on
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Aww, little things mean a lot When you need a shoulder to cry on I'm there to ease the pain and chase away the rain darlin' I just gotta say
Oh, it's so nice to be with you I love all the things ya say and do And it's so nice to hear you say You're gonna please me in every way ... Life is short: sing your love.
Recovery Continues, Let's Make It a Lovely Day (Friday, September 18, 2020)
Chuck had a fairly good day yesterday, though he is suffering from a side effect of his surgery that he thinks is "dumping syndrome." This syndrome (if that is what he has) happens when the pylorus (the valve that controls emptying of the stomach) is removed during Whipple surgery. That causes rapid entry of food from the stomach to the small intestine, and results in uncomfortable symptoms, explosive bowel movements, and poor absorption of nutrients. No wonder he is still losing weight.
Then at 8:30 pm, the pain he thinks is gout in his left foot flared painfully. Chuck became rather grumpy. I walked with him back to his room, gave him some Advil for the pain, and then sent a message to his primary doctor, copying his surgeon, to ask what we can do for both situations. He is wasting away, and I am frightened that he will not gain the strength to endure chemotherapy. He is not able to walk much due to the gout pain, which slows surgical recovery as well. I will engage his doctors by phone today for more guidance.
With all this going on, I had a troubled and restless night. At 4:30 am, unable to sleep any more, I got up, stumbled into my home office, and distracted myself with follow-ups to a meeting in which I was engaged yesterday. I was trying to compose a message to a colleague to explain some concerns. Then, around 6:30 am, I noticed an email from Chuck that he sent last night at 10:30 pm. I guess he couldn't sleep, either)
In it, he said, “I know you sing me songs with lyrics that have meaning. So here are some lyrics for you, from me. Recognize the song? This is truly how I feel about you. I love you."
When the day that lies ahead of me Seems impossible to face When someone else instead of me Always seems to know the way Then I look at you And the world's alright with me Just one look at you And I know it's gonna be A lovely day
Awww... my love sent me a clip from the Bill Withers song Lovely Day. Yes, my love, let's make it a lovely day – another day to love you and show you through deeds how I care.
Life is short: make it a lovely day!
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An Outing (Saturday, September 19, 2020)
Autumn-like weather has arrived. We are enjoying cooler temperatures and much less humidity. Brilliant sunny skies beckoned us to get out! Thinking that Chuck would benefit from the pick-me-up of going for a drive, we did just that.
Chuck wanted to see horses on a farm again. I don't quite know what his fascination with horses is, but that’s what he wanted. So I posted on my Facebook page a photo (taken on a motorcycle ride in 2010) showing a group of friends in my former motorcycle riding group on a rural road with a horse farm, and asked, "Where is this?" My friends soon replied, and today I set out to find it. And we did, yay!
However, this particular farm's horses must have been in the stables, so they weren't visible. But we were way out in Montgomery County's lush Agricultural Reserve, so I knew if I kept driving on the rustic roads in the area, I would find horses grazing on pasture somewhere. And indeed we did. Chuck sat in the Jeep and watched while I took photos for him. He was so happy just to get out and do something different.
When we got back home, it was obvious that this little outing had sapped Chuck of all his energy. He said that he felt like the Old Gray Mare we saw that was resting in the pasture of the farm. He soon dozed off in a nap. But he continued to smile while gently snoring. I loved laying on the sofa near him and listening, being with him, and knowing I was able to bring joy for both of us.
Life is short: enjoy another day to bring joy to your love!
My Own Health (Tuesday, September 22, 2020)
Tending to Chuck during his recovery, preparing for future medical treatments, picking up all of Chuck's usual household chores (laundry, vacuuming), and running errands almost daily to stores and the pharmacy, has run me rather ragged. I am not the "spring chicken" that I used to be.
With the added stress on me from Chuck's hospital-induced PTSD and my own fears and concerns for my beloved husband's health, my chronic Crohn's Disease has flared again. So far, the flares have been relatively mild and controllable at home with diet, exercise (of which I am getting plenty), and focus on making sure I take time to rest, nap, meditate, and whatever else I need to do for my personal restoration each day. I credit OC and our weekly on-line visits with keeping me steady enough that the Crohn's flares are manageable at home. He made me carve out "me time" each day to rest. Even a half-hour nap does wonders! The half-hour morning meditation in the garden also remains my favorite centering activity.
Back to the Crohn's: My previous gastroenterologist retired. When the Crohn's flared in late May, I reluctantly selected a new gastro specialist. We have been having some interesting conversations through telemedicine. He reviewed all of my records sent over from my other doctor's office. He wanted to start me on a strong corticosteroid, to which I strongly objected. The doctor could see in my records what bad reactions I had to all forms of steroids.
The doctor recommended a new biologic treatment, but for now, I want to wait since such treatments had wiped me out before. At this stage of my need to provide support and care for Chuck, I must remain at the top of my game.
Life is short: take care of yourself and manage your health so you can care for the one you love.
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Chapter 5 Oncology and Preparing for Chemotherapy
Next Steps (Wednesday, September 23, 2020)
Chuck and I had a telemed visit with the oncologist assigned to his case. He has quite a good reputation. This doctor works at Washington DC-based Sibley Hospital, which is owned and operated by the Johns Hopkins Medical System (headquartered in Baltimore).
We learned today that Chuck definitely has pancreatic cancer, which is really bad. Chuck was among the few patients fortunate enough to be able to have a cancerous mass resected (removed) during Whipple surgery, one month ago today. For most people, by the time pancreatic cancer is detected, it has spread throughout the abdominal organs and surgical removal is not possible. So that's the good news.
The bad news is that having a cancerous mass removed does not mean the cancer is "cured" or gone. This type of cancer can be found in cells in the bloodstream and can recur rapidly in the form of more tumors in the liver, or kidneys, or lungs. Or all of them. Or none of them for a while, but eventually, and probably within the next two to three years.
If that happens, Chuck wants to die at home under hospice care. No more surgery. No more hospitals.
Next steps for Chuck now include two more CTs to ensure a mass has not returned already. Those CTs are scheduled October 7. He will have more lab work, too, to look for the cancer markers and determine the extent of their presence in the blood.
Provided no cancerous mass is detected in the CTs and the cancer marker numbers are below a certain level, then Chuck will go to Sibley Hospital's Outpatient Surgery to have an infusion port installed on his upper left chest. That is how chemo drugs will be administered. Chuck is scheduled to begin chemotherapy on Wednesday, October 14. He will be given a four- drug chemo "cocktail" in sequence, along with anti-nausea medications. This and subsequent chemo visits will take about six hours each.
And... I can't be with him when he's getting chemo. Damned Covid restrictions!
I will take him by wheelchair into the room, but then I will be made to leave. The doctor said that I should go home and come back to get him. Uggghhh... I hate that. I hate leaving my love all alone while he is being given poisons to kill cancer cells. He will feel miserable already, and I can't even be there to hold his hand and comfort him. If I have not said it before: I HATE COVID! I understand why restrictions are in place, especially for cancer patients with compromised immunity. But I STILL HATE COVID!
When Chuck comes home after each chemo treatment, he will still have to have a pump to administer more drugs for two more days. Then a home-visiting nurse will come to remove the pump and ensure he is free from infection. He will be nauseated, poopy, and very fatigued. I'm sure, quite grumpy too. I love my old grump. Grump all you want – I love you anyway!
Twelve days after coming home from chemo treatment, he will have to have lab work done to check his blood counts. If the counts are too low, then chemo will be delayed another week. If not, then it’s back to Sibley for another six hours of torture.
Chuck will have to endure this twelve times (12!) over six months. After that, more CTs and blood tests, and if they show no evidence of cancer, then Chuck will wait a month, then have four to six weeks of pinpoint radiation every day for five days in a row. Back and forth to Sibley Hospital we will be going. Through ice, snow, whatever.
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Chuck took the news quite well. It is what he was expecting. I was more prepared to hear this news too, but I can't say I am not disheartened, disappointed, and sad. I love Chuck, and will always be there, always, however long. Always.
I am truly hopeful that when treatment ends in May, Chuck will regain some strength, and we can make our trip to the Canadian Maritimes that he has been dreaming about. This gives him (and me) something positive to look forward to. The doctor thinks that would be great to do. Canada – let us in!
As a buddy said the other day, "Tomorrow is never promised. Live today like there's no tomorrow." So yeah, we'll do that. Get an unrelated weird lesion removed from Chuck's scalp, then take off for some more photo shoots!
Life is too damned short!
Blood Clots (Friday, September 25, 2020)
What we thought was a gout flare in Chuck's left foot has now been confirmed to be blood clots in his lower left leg whose symptoms of leg and foot pain mimicked actual gout. It is common to get blood clots after major surgery, even for someone as healthy as Chuck was before the surgery was performed.
During follow-up phone calls, his surgeon was concerned and ordered imaging of the left leg to check what may be going on. Yesterday, I took Chuck to the Johns Hopkins imaging center in Bethesda. I was able to accompany him in person because I put Chuck in a wheelchair. While he can walk, he gets exhausted quickly. Turns out a wheelchair solves a number of issues, including allowing me to be with him during all procedures. Other than standard Covid screening questions, no one said a thing about my being there.
Chuck hates having to use a wheelchair because he thinks people pity him when they see him. No matter how often I tell him, "fuggetaboutit," he can't. He hates being pitied. He also hates that when someone is in a wheelchair, some of the medical personnel talk to the person pushing the chair instead of to the patient. That happened a few times yesterday. I pointed to Chuck and gently said, "Please talk to him, he is the patient. I'm just the spouse." Most apologized and quickly changed course.
Chuck had both an X-ray and an ultrasound of his left leg, ankle, and foot. I was able to be with him for both procedures. The X-ray didn't show anything unusual. The ultrasound, however, was fascinating to watch. I could actually see the clot that the technician found and took digital images of.
We were asked to wait until the on-site radiologist spoke with Chuck’s doctor, the lead surgeon for his case. We did not have to wait very long. We were told to go home, and that the doctor would call us. It took about 40 minutes to get home. Not two minutes after arriving home, the phone rang. The doctor ordered a prescription for blood thinners for six months.
At first, the doctor was going to prescribe Xarelto. Chuck had that drug before, and my records showed that he had a bad reaction to it. The doctor switched to Eliquis, which my records showed he tolerated well. I heard the doctor say to someone else, "I haven't had a patient in a long time who has such great history of medical records."
When she realized I heard what she said, she repeated it and thanked me for always being so thorough. I said, "Sure, it's what I do."
Later, I had to get both the pharmacy and the insurance company on the phone together to get the prescription approved. They can't seem to understand a "tapered dose." That is, he takes more of it for the first seven days, then tapers down to a maintenance dose thereafter. I had to explain that to them. You'd think they would have seen that before. Go figure.
Our next trek is to see a dermatologist on Wednesday (September 30), about an awful growth on Chuck’s scalp. It is not infected, not oozing anything; it just looks like a growth of some sort. Chuck insists it is an infection resulting from having
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been man-handled by a TSA agent on leaving Hawaii on March 23. It isn't, but there is no convincing him otherwise. I love my man, but testadura still applies. So let's see what a professional says, as well as learn what he will do about it.
Life is short: care remains an ongoing constant.
Ups and Downs (Sunday, September 27, 2020)
We've had an up-and-down weekend.
Saturday, Chuck watched while I made foods that he has been craving now that his appetite has returned somewhat. I prepared home-made gnocchi like his Dad used to make; fresh pasta using semolina flour sent to me by a friend who lives in Pescara, Italy; and, using the rest of the apples we bought last week on our outing, two apple crumbles. Chuck has been gaining a little weight, and we are both pleased. He has gained five pounds from the low he reached last week. His mood has been calm, and we've been having good conversations.
However, this morning, something set him off. I have no idea what it was. He became hysterical, and shouted words that I know he did not mean. No one should hear those words. No one. I handed him a tissue and walked away. He chased me, yelling some more.
I was frightened. I had never seen him so upset for no reason. I did not say or do anything to provoke such a reaction.
As my sister reminded me, fear has a weird way of being displayed. I called her for our usual Sunday catch-up soon after Chuck lost it. I sincerely appreciate her calming and helpful advice and support. I love my "little sister."
After speaking with my sister, I decided to pull tons of weeds from a garden that had become neglected and overgrown. I was keeping my distance from Chuck, as I knew he needed more time to calm down and regain his composure. There I was in the side yard, weeding away and crying, when I heard a fire truck roll down the street. I got up to look, to try to figure out what was going on. There they were – a crew of 10 (a ladder, engine, and squad) – coming to "kidnap" me.
They gave me some time to wash up, prepare Chuck's avocado mash lunch, and tell him that I was going to go out for a while. I was taken to the fire station for a surprise lunch of comfort food – hamburgers & hot dogs. It was nice to have support and camaraderie from the guys at my former home station (before I moved out to a different service area). It couldn’t have come at a better time.
Well... now I’m home again, and it’s dinner time. Chuck is more at ease, and so am I.
Life is short: love the one you love, but sometimes, take a break.
25,000 Steps (Tuesday, September 29, 2020)
I have worn a pedometer since August, mostly out of curiosity as to how much I am (or am not) moving. I need exercise, and walking was our primary method of getting daily exercise. Not that long ago, Chuck and I would walk about two to three miles every other day in malls or nearby parks. Even during the pandemic, we would drive to a park and walk for exercise. Then in late June, our world turned upside down. And here we are, almost in October.
Chuck is walking around the house, including going up and down stairs. No pain, no problems moving. However, he is quite fatigued and lacking in energy. So I offer, "I'll go get that, get this, go run an errand here, go there."
I don't really count it much, but the worn carpet on the steps attests to the reality that I must go up and down both flights of stairs in our house at least 30 times a day, if not more.
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Since Chuck has come home from the hospital, I have averaged 25,000 steps a day at home and running all these errands. At an average of 2,200 steps per mile, for a man of my age and height, that's 11 miles. Per day. Average.
Chuck loves what I am cooking for him, so while his nutrition intake is still compromised due to his surgery, he has gained 5 pounds since hospital discharge. Yay! As for me, I have lost 10 pounds during the same time. Chuck and I used that to develop a challenge for each other – for every pound he gains, I will lose two.
I need to lose weight, but am no gym rat, and have hated exercising ever since I was picked on and bullied by my elementary school physical education teacher. My junior high school gym teacher was even worse. They mercilessly picked on me and allowed the other kids to bully and make fun of me as an awkward, ungraceful kid. I never gained interest in working out or exercising due to these teachers' awful treatment of me as a student.
Oh well... here we are: 25,000 steps!
Life is short: walk!
Five Plans (Thursday, October 1, 2020)
The old adage, "when it rains, it pours," now applies. I know you hate reading bad news after bad news, but I use this journal to pour out our reality and fend off having to talk, which just hurts too much, especially in repeating myself.
I previously mentioned that Chuck had a lesion on his scalp that was growing rather large. He claimed he got it from aggressive manhandling by a TSA agent as we were leaving Kona, Hawaii, on March 23. However, that would have to be an infection, and this growth on his scalp shows no signs of infection. No bleeding, oozing, redness, or pain. But Chuck was insistent he was "given" this lesion by the TSA agent, and there was no alternate reason he would accept for where it came from. Every time I tried to reason with him about it, I was unsuccessful. My blessed testadura.
Alas, when I took him to a dermatologist at Sibley Hospital yesterday, we both learned that it was worse than either of us expected. The dermatologist looked at this lesion/growth and said, "It looks like aggressive skin cancer. I've seen these before." Until he gets results from the pathology review of tissue samples, he can't be sure. But his experience and review of Chuck's situation led to his professional opinion. A formal diagnosis will follow upon results of the pathology report in 7- 10 days.
After checking that insurance would cover it, the doctor cut off this ugly growth, and then suggested that MOHS surgery may follow. MOHS surgery means thin layers of cancer-containing skin being progressively removed and examined until only cancer-free tissue remains. That sent Chuck into a tizzy. He had MOHS surgery on a different area of his scalp three years ago, and he is still complaining about it. He said the surgery was very painful, and he was left with "a crater" in his scalp. He refused to even consider MOHS. I get it. He has worse things going on.
When we arrived home, we sat down and got past our shock. While I was tearful and upset, Chuck was calm. He was already analyzing and planning during our drive home. He has been considering himself "a goner" since receiving the news that he has Stage IIB pancreatic adenocarcinoma. Once I regained my composure, we fully discussed the situation, and made some plans for what we will do on receipt of the pathology report in a week or so.
Plan A: The scalp growth is not cancer after all. Then Chuck will proceed, beginning on October 14, with six months of chemotherapy, a month off, radiation if required, and ongoing surveillance (CTs, labs, doctor visits) for pancreatic cancer (likelihood: 1%).
Plan B: The scalp growth is cancer, but unrelated to the pancreatic adenocarcinoma. Chuck will then have "slicing" done to remove more possible cancer cells and may go forward with pinpoint radiation of the scalp, all while undergoing chemo treatments simultaneously. I will engage Chuck’s oncologist to coordinate.
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Plan C: The scalp growth is cancer and is suggestive of a metastasis (spreading) of the pancreatic adenocarcinoma. Chuck will then suspend chemotherapy and get more CTs and labs so his oncologist can determine if indeed the cancer has spread even further.
Plan C-1: If the pancreatic adenocarcinoma has NOT spread beyond this scalp lesion, then proceed with Plan B.
Plan C-2: If the pancreatic adenocarcinoma HAS indeed spread to other parts and organs of his body, then Chuck will not undergo chemotherapy at all. I understand and support – why go through that torture if it will only prolong agony, pain, and the inevitable?
If indeed we are faced with the worst-case scenario (Plan C-2), while Chuck is still relatively healthy enough and feeling good enough to travel, we will go somewhere like Puerto Rico again. Pandemic be damned. We will stay in what Chuck calls a "shishky high-class" place, where money is no object. We will enjoy a month – or as long as Chuck feels up to it and wants to stay – in warm tropical weather, and I will visit my friends again.
Chuck will want to help me find a place to live in my future without him.
This is so damned hard; I have to end this journal entry now. I will continue more thoughtfully in a few days.
Life is short: planning to know what to expect helps soften the emotional blows.
P.S.: I am "being seen" by OC and will soon begin participating in an on-line support group for spouses of cancer patients. I am doing the best I can to look after myself while giving care for the one who completes me.
Poor Recovery (Saturday, October 3, 2020)
I can't sleep. I spent two hours (between 3 am and 5 am) trying to find more information on how to help Chuck. He is not recovering from his surgery that he had almost six weeks ago. Our previous thoughts that he was gaining weight were wrong. He had water weight from retention/constipation, before a massive discharge returned his weight to zero gain.
We sent a message to the oncologist (I wrote this in Chuck’s voice):
I think chemotherapy should be delayed. I am not recovering well from the Whipple surgery. My current symptoms:
* continued weight loss (what I thought was weight gain was water weight.) * lethargy, fatigue, no energy. Frequent napping. * difficulty sleeping through the night. * occasional vomiting when I try to introduce different foods. * frequent bowel movements filling the toilet. Worse when I use pancreatic enzymes. * I feel that I am not getting adequate nutrition. * unable to tolerate pancreatic enzymes; cannot use them as much as prescribed – no alternatives provided
I don't think I am ready to begin chemotherapy on October 14. I cannot tolerate the side effects of chemo if I am in such bad shape with such slow surgical recovery. I am not strong enough.
I need help from a professional nutritionist. A nutritionist who saw me at the hospital was bad. "Eat what you can tolerate" is no help at all. Do you have a suggestion for a nutritionist w/specialty in dealing with cancer patients that my husband can talk to?
Plus, no one has called to schedule the port installation that you wanted done October 9. Maybe Sibley Oncology is too busy or overwhelmed, or your requests are being ignored? Doesn't matter... I am not ready.
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Yeah, no matter what I do, how hard I try, I have not found a way to provide adequate support. My beloved husband is not getting better. In fact, worse... slowly... oh, how painfully slowly.
Life is short: every day with him is a gift, no matter how miserable.
His Heart (Monday, October 5, 2020)
Beware: this is mushy.
All of my family and friends know that I love Chuck very much. It is evident in how I speak, sing, cook, clean, and take care of him. He loves me back as much, if not more.
How did he win my heart? I could quote poetry, verses from the Bible or Torah, but instead of using other people's words, I will use my own.
He won my heart by showing me his heart. His thoughtfulness, tenderness, compassion, and his soul. Yeah, we are soulmates, but more than that.
He does the little things that show he cares. He says the little but important words that express his love in many ways. And yesterday, I got all mushy again over yet another tender act.
We discovered the small, lifeless body of a sparrow on our deck. Chuck loves these little birds for the way they bring life and joy to the world. He hears their tweets, stops, and looks out to see where they are. He often stops everything just to watch sparrows flitter, flutter, and dance around our yard and gardens (Chuck took the photo above).
Often, no one thinks about a small dead bird. Other people simply get the broom and sweep it into the trash.
Not Chuck. He was genuinely saddened to see that little sparrow, lifeless on the floor of the deck. He looked around to see if the bird hit something that killed it, something we could correct. He didn’t find anything, but if he had, a correction would have been made. So instead, he knelt and said a little prayer. Honestly, who would do that? My man with such a big heart.
Then Chuck asked me to get a small shovel, pick up the bird's body, and carry it to our back yard near the area where I meditate daily. He fashioned a cross out of small bamboo sticks and a rubber band. Then he and I slowly walked to the far back of our yard. I dug a deep hole in the soft earth and buried the little sparrow's body. Chuck put in the cross he made as a marker and said another prayer.
I got all weepy, I admit. Not because of the bird, but because my Chuck is so tender and caring – even about a small sparrow. He is so thoughtful, kind, and warm-hearted. I wish everyone knew him as I do. Now you know more about why I love him so.
Life is short: show tender care for the life of the sparrow.
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Busy October (Wednesday, October 7, 2020)
I have no idea how cancer patients manage on their own. There are so many things that have to be organized. Organization is something I am known for (at least in my professional career and volunteer activities), even if the disorderly piles on my home office desk betray that.
Daily, I clean the wound from Chuck’s scalp surgery and change the dressing twice a day. I keep track of his ever-changing medicines and what he takes when: it's this 1 an hour before breakfast, 5 thats at breakfast, 2 thises at lunch, another of the morning medicine an hour before dinner, 2 more thats at dinner, 3 more thises at bedtime. Plus getting prescriptions refilled as we go along. I cook and bake, which Chef Guido and I enjoy: fresh pasta, gnocchi, fruit crumble, and gluten-free breads. I prepare a small hot meal for Chuck five times a day and love it. Truly, he loves how I fuss over his meals and I love how he loves what I prepare for him. Unfortunately, he still can’t eat a variety of foods. He can’t manage most proteins, fruits, or vegetables.
Then there are the appointments to schedule, prepare for, and get him to.
October 6 – Chuck had a lab visit for a blood test for cancer markers and blood counts, plus a stool sample test for nutrition (oh what fun – the look on the lab folks’ faces when Chuck handed them a zip-lock container full of his poop).
October 7 – We went to Sibley for two CTs. The process was smooth, uncomplicated, and rather quick (the drive there took longer than having the CTs done). However, I am still bewildered and somewhat angry that the receptionists in medical facilities forgot that Chuck was even there. They asked me questions meant for Chuck and wouldn't look at him sitting right there in the wheelchair. Arrrgghhh! He is a human being with feelings! I corrected their behavior by educating them. Each apologized.
October 8 – We are expecting pathology results of tissue from the scalp lesion.
October 12 – We will have a follow-up telemed visit with the surgeon, including ongoing conversations about slow recovery and nutrition.
October 14 – We will have an in-person visit with the oncologist at Sibley Hospital. That will be interesting. Results of CTs and labs to be discussed.
October 15 – I will co-chair a professional meeting in the afternoon. My own life continues, though limited.
October 16 – I will take Chuck for his sixth Covid-19 test at Sibley Hospital required before a surgical procedure next week. Also, I will be given an injection of a biologic to get my Crohn's Disease under control.
October 17-18 – Planned down time for me, in case the Crohn's treatment takes me out for days like previous treatments have done.
October 19 – Chuck really really really wants to have one more photo shoot. This is the only day we can do it. I hope the weather and Chuck's stamina will cooperate.
October 20 – Chuck will have a mediport inserted into his chest at Sibley Hospital. This is the device that is used to apply chemotherapy. It is considered a minor surgical procedure.
October 21 – We will have a video visit with a Johns Hopkins dietician/nutritionist.
October 22 –We plan to take advantage of a "chemo class" offered by Johns Hopkins on-line.
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October 23 – I will pick up a load of "keep at home" drugs for as-needed treatment of nausea, pain, and other potential side-effects. We have been told to expect to have 6 drugs prescribed.
October 25 – Connect with my friend, a motorcycle police officer, about selling my Harley. Yeah, it's time to say goodbye; my friend will sell it for me. I can't manage riding a motorcycle with the Crohn's fatigue on top of caregiving requirements for Chuck.
We also had chemo treatments planned for the end of October, but they have been rescheduled for early November.
Once chemo starts he will have labs, chemo in the hospital, and two days of chemo at home every two weeks, along with whatever other appointments become necessary. This is going to be sheer hell. I commend Chuck for having the strength to approve going through this torture. If it were me, I would not likely be able to withstand it. But at least I can help him manage it. He won’t have to handle it alone.
Life is short: Rinse, lather, repeat.
The Harley (Thursday, October 8, 2020)
This entry is about my Harley and my decision to part with it.
"You are going to sell your Harley? Why? You love riding it so! It's your only escape!"
Yeah, all true... but I just don’t have enough time, given all that has been going on with Chuck. My priorities have been 1000% focused on taking care of him: shopping, preparing home-made foods, cooking, doing all of the household chores, driving him to medical appointments, and just spending time with him, listening... everything. These tasks require most of my time, though it is lovingly given.
The consequence of not riding frequently is that my riding skills have become sloppy. I have made rookie mistakes that frighten me. I almost dropped the bike because I forgot to put down the side stand, I turned too tight and almost lost control, and I found myself riding much too slowly because I am being timid and overcautious: these things shouldn't be happening to someone with as much riding experience as I have.
On top of that, add in the stress. I work carefully on stress-reduction techniques, such as meditating almost every day for 30 minutes, taking daily walks, and talking with a therapist once a week. They all help. However, the level of stress I’m under still brings on unfortunate (and untimely) Crohn's flares. Trust me, you really don't want to know what's involved with a Crohn's flare. It isn't pretty.
Even when my Crohn's isn't acting up, it sits like a silent tormentor in my system and fatigues me. The fatigue just gets me, especially when I am riding my Harley. When I operate a heavyweight motorcycle, especially on busy suburban roads and highways, safety requires that I always, always, have to ride with 1000% focus and attention. That takes a lot of effort and energy, which requires stamina. Crohn's fatigue destroys stamina. It's that simple. And also it's that sad. There is no magic pill I can pop to restore what Crohn's takes away (trust me; I've tried everything).
Further, given that I am Chuck's sole caregiver and only friend in the world, I cannot risk injuring myself, through my own fault or another driver’s. I just can't accept that risk anymore.
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I have been thinking about giving up my Harley for some time now. I wanted to take a few "last rides" before I did that. Yesterday, I rode my Harley on roads I love, through the Catoctins, to visit my dear friends who live just north of the Maryland border in Blue Ridge Summit, Pennsylvania. I took my time, stopping occasionally so cars behind me could whiz past and my slowness wouldn't make them mad enough to do silly things like try to pass me on a double-yellow line.
By the end of this month, I think I will be mentally ready to part with my Harley. My friend will sell my bike for me. Now, this does not mean that I will give up motorcycling all together. As my brother-biker Steve said the other day, I can always rent a Harley when I want to. Steve and I had planned another motorcycle adventure this year, but it got sidelined by Covid travel restrictions.
I am hopeful that by summer 2021, things may have calmed enough for Chuck such that Steve and I can resurrect our delayed adventure. That assumes we both can get a vaccine for Covid-19 and that Chuck will be okay on his own for a week.
Well... that's the decision. I loved having two Harleys (1993 - 2008 Dyna Low Rider, 2008 - 2020 Road King), but it's time. Time to move on.
Life is short: be at peace with your decisions.
Diet Trials (Sunday, October 11, 2020)
Chuck continues to have enormous problems retaining food. He passes everything he eats rather quickly. He does not have diarrhea; he just can't retain foods. His weight is stable, but it is still bad at 143 pounds.
I continue to try to find foods for him that will help him get adequate nutrition and not cause massive pooping and gas. Man, let's not go there. He could fuel the next rocket to Mars.
Chuck has tried (and enjoyed eating) some variety in his diet, different foods that I love to prepare for him. He got on a kick with avocado mash, then apple crisp, then peanut butter on gluten-free bagels, then this, then that... all have either added to, or haven’t relieved, the pooping and gas problems. No fruits, no vegetables, no fiber, no meats we have tried have helped.
His medical providers have tried, but so far, none of their suggestions have helped. They keep saying, "It will eventually get better, in months." But in months, Chuck will be undergoing chemotherapy. I worry a lot about that, because if he is not getting adequate nutrition now, what will happen during chemo, when he may be nauseated and vomiting? We keep asking to talk to a nutritionist, but again, crickets. "Just wait... it will get better."
I continue to try; I cook something new every day. He loves anything I make with potatoes, such as gnocchi, potato pizza, and twice-baked potatoes. But it seems like the lovely old russet is all he can eat.
Listen to me singing, "One potato, two potato, three potato, four..." as I work in our kitchen.
Life is short: keep trying...
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Complications Compounding (Monday, October 12, 2020)
Today was another bad news day. The dermatologist who saw Chuck on September 30 called with results of the pathology of the lesion that he cut off Chuck's scalp. He did not call Chuck, he called me. Why? Because he knew that the news he had to share would upset Chuck.
The pathology, done once at Sibley Hospital, then done again by the Central Pathology Lab at Hopkins Baltimore, confirmed: Squamous Cell Carcinoma with peripheral nerve involvement.
That means this aggressive cancer has begun to spread through the nerves on Chuck's scalp.
OMG.
Considering the aggressive nature of this new cancer, MOHS surgery was recommended as the only treatment option.
MOHS surgery involves slicing layers and layers of cells deep into the tissue until on-site pathology indicates no cancer in any of the margins of the remaining tissue. Chuck had MOHS surgery in October 2016 in a different area of his scalp. He was left with a rather large "crater" on his scalp which he detests and calls "ugly". He also was in pain on this scalp area for months following that surgery. No wonder Chuck is reluctant to consider MOHS surgery again.
So here we are... two aggressive cancers, not one. Two different methods to treat them. Squamous cell carcinoma with peripheral nerve involvement can't be treated with chemotherapy, since chemo can't penetrate nerve cells. Radiation is not that effective, either.
Chuck has requested referral of his case to the Johns Hopkins Tumor Board, which is composed of senior doctors, oncologists, surgeons, and other professionals. It's his right to do so. We want to know if the treatments – MOHS and chemo – can be done sequentially instead of concurrently, and also if it will make a difference in longevity of a quality life.
I think it will; Chuck is not as positive. He spent hours in the doldrums of fatalism again, counting his life span in terms of months, though no doctor said that. I understand. I wish it were different... I wish so many things. Chuck is more accepting and realistic.
A little piece of good news – the results of a recent cancer marker blood test (CA 19-9) was 11, which is well within the range of "normal." It was 153 two weeks before his Whipple surgery in August – obviously high because he had a 2.3cm adenocarcinoma mass on his pancreas.
Chuck's surgeon said during a follow-up telemed visit with her today that in her opinion, MOHS surgery probably could be done very quickly, with only a one- or two-week recovery period. So delaying chemo by two weeks may be an option to ask about, especially given the low CA 19-9 result and results of CTs taken October 7 as "no metastasis evident."
We have an in-person visit with the oncologist on Wednesday. My list of questions for him has grown much, much longer.
Life is short: keep the focus on coordinating complications, and, as always, showing the one I love through actions and words how I love him.
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Another Crazy-Love Earworm (Wednesday, October 14, 2020)
I was driving home from another errand for Chuck yesterday when a song I had not heard in a long time came on the radio: Happy Heart, made famous by Andy Williams in 1969.
I came home and sang it to my beloved husband until he said, "Okay, I love you too. Can we find another tune?" I must have been driving him nuts. The lyrics, though, are once again meaningful to me and our relationship. I will always sing about how happy my heart has been and is with my love, my heart, my Chuck.
Happy Heart
There's a certain sound always follows me around When you're close to me you will hear it It's the sound that lovers hear when they discover There could be no other for their love It's my happy heart you hear Singing loud and singing clear And it's all because you're near me, my love
Take my happy heart away Let me love you night and day In your arms I wanna stay, oh my love
Feeling more and more like I've never felt before You have changed my life so completely Music fills my soul now, I've lost all control now I'm not half, I'm whole now with your love
It's my happy heart you hear Singing loud and singing clear And it's all because you're near me, my love
Take my happy heart away Let me love you night and day In your arms I wanna stay, oh my love
Life is short: sing your love (until he clonks you on the noggin')
Next Steps (Wednesday, October 14, 2020)
Chuck had an in-person visit with his oncologist today.
He sure has a complex case: both pancreatic adenocarcinoma (PDAC) and squamous cell carcinoma with peripheral nerve involvement (SCC-PNI). Both are first treated with surgery. Chuck had a large tumor, later confirmed to be adenocarcinoma, removed from the head of his pancreas on August 24. He had another surface tumor removed from his scalp, later confirmed to be SCC-PNI, on September 30.
The surgery for the rest of that cancer, which is in the nerves and deeper in the scalp, is known as "MOHS Plus." The "plus" involves rather deep and wide removal of tissue on the scalp, digging canyon-sized ridges to remove nerves with cancer
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margins. We were informed by the oncologist that recovering from this surgery would take three or more months and is quite painful due to the number of nerve endings in the scalp.
The really bad news is that the potential for recurrence of adenocarcinoma, with more tumors in the liver, kidneys, or lungs, increases with each week following Whipple surgery. That is why aggressive chemotherapy was scheduled and must be done as a priority. MOHS surgery must be deferred until Chuck has had chemotherapy and the following radiation (if required) and has recovered from those awful treatments.
We were carefully cautioned that delay of MOHS surgery on the scalp may result in more squamous cell carcinoma and its spread. Chuck just shrugged and said, "What can we do?"
"Well...while I believe you must being chemotherapy for the adenocarcinoma, there is one thing," the doctor replied. “Your chemo regiment will include a combination of four drugs: folinic acid (leucovorin), 5-fluorouracil (5-FU), irinotecan (Camptosar), and oxaliplatin. When combined, it’s called FOLFIRINOX. There has been some studies that have shown that FOLFIRINOX can have some beneficial effect against squamous cell carcinoma. But there is insufficient evidence to know for sure.”
The oncologist went on to explain that chances of spread of SCC to other parts of the body is low, but not out of the question. He told us that about 20% of people with confirmed SCC-PNI who don't get MOHS surgery (for whatever reason) may have the cancer spread elsewhere. Chuck shrugged again.
If Chuck can endure the chemo and the side effects, then he has a better chance to avoid SCC complications.
We drove home silently. After changing clothes and showering, we sat in our basement and cuddled. We really don't know what else to do. We're both still somewhat in shock.
While I took a lot of notes, I am absolutely certain that I will have many more questions.
Life is short: too short, warts, tumors, and all.
My Support Group (Thursday, October 15, 2020)
My family and close circle of friends ARE my support group. The attentiveness is most sincerely appreciated.
After being advised to join a support group for cancer caregivers, I sought recommendations from Johns Hopkins Oncology, and picked one that appeared to be quite appropriate and specific – caregivers for newly diagnosed pancreatic cancer patients. There were 10 people in this group, all women except me. One lesbian couple, and all others a female caring for a male cancer patient. I sort of expected that. Few men join these things or admit they can use or even need support. The group exists as an on-line discussion board. It does not meet in person, or even by videocam/Zoom on-line.
I have poured out my soul and asked questions, only to have no response other than more outpouring of "woe-is-me" despair from other members of the group. Some of the posts are rather frightening to me, to be honest.
I just requested to be dropped from the group. I have asked for a referral to another support group because I feel the right group will help me. However, that doesn't really matter. YOU matter. Very much.
My sisters who listen to me cry and virtually hold my hand help more than they ever, ever will know.
My close friend Keith has been my direct caregiving partner in many ways since the beginning of Chuck's crisis in June. As a Supervising Paramedic, and my partner since back in the day when we trained together at our local Rescue Squad in 1978, his direct help and intervention when I need it is incredibly important (and necessary).
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Other Chuck – my therapist who sees me once a week – has been incredibly helpful, too. As a dispassionate yet supportive observer, he can help me see what I am not thinking about, and help me get my act together, so I can be strong for Chuck.
My very close friend in California, sorta like a second Mom, deserves kudos for daily connecting with me. Thanks, Pat. You've always been there for me, and I love you.
My motorcycle riding brothers Steve, Matthew, and Craig, know how my heart is hurting as I take steps to sell my Harley.
If I have not mentioned you by name, please do not discount your role. YOU are on a very small list of people on whom I am leaning, loving, and appreciating all your caring. Every day. Thank you! Gracias! Grazie! ευχαριστώ!
Seriously, YOU are my support group. I really don't need an outside group of people who lament about how horrible pancreatic cancer and chemo is. I know that.
Life is short: I am showing YOU that I love you and am GRATEFUL for you every day!
Recovery (Saturday, October 17, 2020)
I made it to Saturday morning! Wasn't sure about that yesterday.
On Friday, my friend Keith drove me to see my gastro specialist to get an injection of a fairly new biologic approved for use on chronic Crohn's Disease patients. I had a 1 pm appointment. I scheduled it in the afternoon because I had to take Chuck to Sibley Hospital in the morning to get another Covid-19 test, required before a surgical procedure to implant the chemotherapy mediport next Tuesday. Keith was able to be with me in person throughout this experience because I claimed that his presence was required as an ADA accommodation.
Disability? Me? Yep. Abject fear of needles qualifies as a mental health issue. In my role as primary caregiver for a cancer patient, my mental health must be preserved as much as possible.
The doctor, knowing how painful the shot would be, gave me a valium and had me wait about 20 minutes for it to take effect. It did. Keith guided me into the exam room. I floated there, as far as I could tell.
I do not really remember the injection. I was told that I did not faint, which is a good thing, despite the huge needle! The injection was deep into tissue in my left arm. It took about five full minutes to complete. Thankfully, I avoided getting it in the butt, which probably would have made it impossible for me to sit to drive Chuck anywhere for the next week.
After the injection, Keith tried telling me sordid jokes like the guys tell in the fire house. Anything to get my mind off the current situation. But my arm began to turn red and swell. Man, it hurt. The doctor looked at it, determined it was an expected site reaction, and said it would return to normal in an hour or so. I had no other reactions, so the doctor released me. Keith drove me home, watching me closely all the way.
When we arrived home, Keith helped me to the door, where Chuck greeted me and walked with me to the bedroom. He asked me if I wanted to sleep, eat, or just rest. I said that I should get into bed to rest and see what happened. The doctor said that if anything were to happen, the reactions would occur within the next three hours.
Chuck helped me undress and get into bed. He sat in a chair, watching me. Unfortunately, no sooner than I got into bed, I began to get a headache. And then the headache got worse. Pounding! Crushing! Immobilizing! I got nauseated, so Chuck got me a bed pan in case I needed it. I had not eaten since breakfast.
I don't remember much other than asking Chuck to get a rifle and blow my head off. I was writhing and screaming. I have never had such intense pain. Instead of shooting me, Chuck called Keith, who came right over. Keith assessed the situation and called my doctor who took the call right away because it was so urgent.
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The doctor prescribed a powerful migraine medicine that Keith fetched from our pharmacy. This was yet another injection that Keith, as a licensed paramedic, was able to give me. The doctor was happy that I had someone who could administer the shot at home, instead of having to take me back to his office while I was in no state to travel, walk, or breathe. It was that painful! I really don't remember getting that shot – yikes! The head pain was so severe, he could have hit me with a cannon and I wouldn't have known it. Fortunately, the injection worked quickly. Chuck told me that I fell asleep. Keith left after informing Chuck what to look for and to call 9-1-1 and him if my breathing slowed or I vomited while sleeping.
Four hours later, I woke. I felt Chuck on the bed beside me. He was holding my hand. I rolled on my side toward his warmth and saw him looking at me intently. I spoke, sounding quite croaky, like a frog, but I spoke. The headache was gone. I was weak, but otherwise okay. The arm swelling had subsided, though my arm is still quite sore.
Chuck asked me if I could manage some soup. Instead, I asked him if he had eaten anything. He should not forget to eat! He assured me that he ate everything I pre-prepared for his meals before I left to get the injection. Reassured, I agreed that some of Uncle Joe's chicken soup – just the broth – would be soothing to my stomach and my soul. While he was heating the soup for me, I dashed off an email to my sister who was checking in and called Keith to croak my thanks.
This morning, I woke about my usual time. I am sore all over, like I was hit by a truck. But I have no other reactions going on. My energy level is rising. I had an English muffin and juice to wash down some Excedrin. I am getting better by the moment – time to go wake my adorable spouse!
Life is short: be grateful for those who care for you during times of need!
Autumn Outing (Sunday, October 18, 2020)
Saturday morning dawned bright, fresh, and clear. A gorgeous autumn day awaited us. I had recovered from the migraine caused by the injection and was feeling energy returning. Chuck and I talked about going on another photo outing, so after breakfast, we loaded the Jeep with the camera equipment, snacks, water, and ourselves bundled in our warm fleeces I bought in Alaska. I set out to find Greenbrier State Park in the Appalachian Blue Ridge as it traverses north through Maryland. The park is located on South Mountain, which was an infamous battle site of the Civil War. The battle won there by the Union Army led to the slaughter at Antietam three days later.
The area that we visited is rich in Civil War history. Since Chuck earned his second bachelor's degree (Summa Cum Laude) in U.S. History after he retired, he narrated our driving tour as I used back roads and byways to get to the park, and different roads going home. This was Chuck's first big outing since his surgery for something other than going to medical appointments. He was excited to get out and enjoy fresh, cool, dry air, but he was also fighting being tired. But he really wanted to do this, and I am glad we did.
We arrived at the park at 10am and I showed our Maryland State Golden Age park passes for entry.
We parked near the lake and slowly, gently, walked along a path beside the lake. Chuck saw a friend who was enjoying acorns under a White Oak. He watched this little furry friend for at least a half-hour. Chuck has a special bond with squirrels. This one watched Chuck for about 10 minutes.
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We made our way to a footbridge near a stand of reeds. We set up the camera on a tripod and used a self-timer to take a picture of the two of us. That was fun.
I also experimented with using the polarizing filter, which brought out a deeper blue sky and brilliant colors on the leaves on the trees. Because our state had a lot of rain in September, the leaf change looked better than in years past.
I could tell that Chuck was getting tired, so we walked slowly back to the Jeep. I'm glad we left when we did, because more and more people were gathering and making us feel uncomfortable because many were not complying with Covid mitigation measures. By the time we left, the parking lot was full, and the park ranger was closing the entrance gate to block more visitors from entering beyond the park's visitor limit.
Life is short: enjoy autumn with your love.
Buying Time (Tuesday, October 20, 2020)
Chuck's self-assessment of his condition is correct and backed up by statements from his oncologist. Chuck frequently says, "I am 'buying time' with the chemo, but I'm not going to be here much longer."
This is not emotion, or fatalism, but reality. Certainly, it is not denial, either.
Here is what I am talking about – selected quotes from the oncologist's most recent written communication:
…on 08/24/20, the patient underwent a Whipple, with the pathology revealing an invasive ductal adenocarcinoma arising in the pancreatic head (2.3 cm), poorly differentiated, extending into the duodenal wall and submucosa and extensively colonizing ampullary and duodenal mucosa. Lymphovascular and perineural invasion are identified. Metastatic Cancer identified – spread to three of twenty lymph nodes were involved (pT2, pN1, cM0). MMR PROficient, and NGS revealed a KRAS Q61H mutation, and an FBXW7 mutation. The surgical resection margins were negative for tumor. This confirms the stage and spread of the previously unknown pancreatic cancer.
The letter goes on to say:
Pancreatic cancer is only curable if it can be safely removed by surgery, Unfortunately, even in patients who have clearly operable disease and a successful operation, pancreatic cancers recur in >80 - 90% of cases, likely due to the presence of micrometastatic disease even at the earliest points of diagnosis. In fact, as much as 10% of patients are found to have metastatic disease after surgery, before they get a chance to start adjuvant chemotherapy, and for this reason, we do need to repeat a baseline CT scan prior to starting chemotherapy as soon as possible. This is why chemo is the priority, right now.
More:
Chemotherapy, either before or after surgery would also hopefully decrease the rate of recurrence by eradicating micrometastatic disease in some patients, and thus increase the rate of cure. The strongest adjuvant data published to date has been with adjuvant FOLFIRINOX (Conroy, et al, NEJM, 2018 Dec 20; 379(25): 2935-2406), which was shown to decrease the recurrence rate to 60%, and to improve median overall survival significantly.
So even with chemo and follow-up radiation, the recurrence rate of adenocarcinoma still is significant, going down only to 60%.
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It's that 40% of non-recurrence time that Chuck refers to as "bought time." He is buying more time to be with me by agreeing to undergo chemo. Chances are that the adenocarcinoma will spread and recur as a tumor in the liver, kidneys, or lungs within six to 24 months following chemo.
When that happens, I will honor Chuck's wishes. No more surgery. No more chemo. No more radiation. No more nothing, medical-wise. He will enter in-home hospice care and die peacefully with me by his side if that is possible.
And don't even add the complication of the cancer on his scalp that is going untreated except for the minor benefit that the FLOFIRINOX may provide.
I'm just a mess. But this is reality. And in this new reality, I pledge to live each day, each hour, each minute to celebrate the love of my life.
Life is short: damn cancer.
How to Help (Wednesday, October 21, 2020)
I appreciate that my circle of family and friends want to support us, and me as Chuck's caregiver. As I sit here in the Sibley Hospital lobby waiting while Chuck is having the chemo port surgically inserted, I thought to write another entry on this journal.
Chuck is very private and non-social, so he has asked me not to tell anyone about his cancer situation. This journal helps me share information, vent my feelings, and gain encouragement.
I read on another pancreatic cancer patient's blog a post on "Advice for Friends." I thought it was good info, and I share it here:
Advice to friends: Ask "what's on your list today?" While friends want to help, they often aren't sure how. A common way is to say, “Call me if you need anything."
Seemingly similar, but importantly different, is another way of putting it: "What's on your list today...what can I do to help with something?"
This is what led to my arranging for the treatment I got for my Crohn's Disease. While I did suffer some reactions, I would not even have considered it if Keith hadn't asked, "If getting your Crohn's under control is what you need to do, how can I help you accomplish that?" Through his persistence, I made an appointment to get the biologic injection when it fit within Chuck's treatment schedule, and Keith actively facilitated it for me. It would not have happened if I had not been "logically pushed" by a trusted friend.
The blog goes on:
"Many times, what was on my list was something non-medical and seemingly unimportant (like getting the oil changed in the car or picking up something from the pharmacy). I would have never thought to bother others with those things. But in fact, at the time, those things might be weighing heavily, as we were burdened with other priorities."
While I am rather self-reliant and prefer to run errands myself, there are indeed times that I just don't make things like tending to vehicle maintenance a priority. My priority is spending more time with Chuck.
More from that blog:
An offer stated that way can also reassure the family and friends that indeed "today is a particularly good day for me to help you."
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I thought this sentence was insightful, because I am reluctant to ask anyone for help, particularly friends who I know are busy in their own lives. If you make it easy for me to tell that you are ready to help that day, it’s easier in turn for me to know how to answer.
Well-meaning things not to say? Please don't ask, "How is he, really?" It is hard to know day-to-day how Chuck is feeling, or for that matter, how I am feeling myself. Please ask, and don't be afraid to do so. But ask in this way: “When did Chuck get up today? What did he eat? How is his level of fatigue? How are you feeling today? How's the pooping? What are you making for Chuck to eat? Care to share the recipe?" It helps to have specific questions to answer. Don't think you are invading my privacy. I'll tell you if I don't want to answer. Also, don't assume that chemo treatment means that we can't have any fun. We aren't always 'sick'. We still like to go out on photo shoots sometimes, too! Ask what we are planning for an escape.
Finally, and this is important: Share stories of your own lives – the kids, the pets, frustrations with work or school. I am interested in what's going on with you and your families. I do not often have time to ask those questions, but I don't want you to assume that I don't care. Update me please!
I ask once more, please do not say, "If there is anything we can do." That phrase, often said at funerals to the bereaved, is rather meaningless. Just ask, "What's on your list today?"
Life is short: be a list reducer!
Finding Joy Today (Thursday, October 22, 2020)
Going back to a relatively short while ago, when my therapist advised me to focus on "one thing" each day for Chuck, I am still doing that. However, I no longer need to focus on "one things" like bathing today, eating today, or walking today. He can do all those things pretty much on his own without my having to coach him.
Now that we're transitioning on this cancer journey, the "one thing" that I pledge to continue to do each and every day is find joy. My friend Laura suggested that recently, and all of my circle say that too, in their own ways.
I am finding joy in: • regular "life updates" on the daily lives of my friends; • funny stories that made me laugh out loud from my friend, Pat; • email, just to know you're there; • photos of beautiful autumn in Massachusetts from my dear friend Roberta; • daily meditation in my back yard garden; • direct phone calls with my sisters; • being told by the nutritionist with whom we e-met, "You are doing more than anyone I know to maintain his nutritional health – can I come over for dinner?"; • planning and going on photo shoots – we have another one planned for today; • Keith's constant support in a physical sense (I had no idea how necessary it would be); • Senior Pals who show they miss me by dropping off snickerdoodles — my favorite; • Chuck's smiles, laughter, hugs, and frequent expressions of appreciation for my caregiving; • seeing Chuck eat with gusto, even times when my cooking didn't turn out quite right and I try again; • having true friends who are there for me always;
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• not having to worry about the financial aspects of this journey thanks to excellent insurance and having adequate savings and no debt.
There's more... always more. I'm getting older, and don't remember things as well as I used to.
This cancer journey isn't for the faint of heart, but I want to assure you that it isn't sad all the time, either. There is joy to be found every day. With your support, I am finding it. Better yet, Chuck is finding it too. You see, when I am relaxed, smiling, and have a joyful spirit, Chuck picks up on that, and he feels better, too.
With my Chuck, I find joy every day, as I have found it all my days with him, during our 27+ years together and 7+ years of marriage.
Vi amo, amici miei, sempre e per sempre.
Life is short: find and share joy.
Joyful Memory Sharing (Friday, October 23, 2020)
Yesterday dawned quite foggy. But the weather forecast was for a warm day, with the fog lifting in the morning. Chuck slept late, but after he rose, dressed, and ate a nice breakfast, he said he was ready to venture out on another photo outing.
We picked the Catoctin mountains again, in north-central Maryland. Peak leaf color was promised by the TV prognosticators. I had been invited to go for a motorcycle ride to this location today by some guys I used to ride with. This was enticing, because this is my favorite place to ride in our state.
However, I could not/would not go out by myself and leave Chuck behind. Since he can't ride as a passenger with me (since 2005 hip surgery), I said, "Let's go on our own! I want to have another joyful day with you, my love!" We took off for a foggy drive to Emmitsburg, then turned left on Rt. 550. I know these roads well, and they're lovely this time of year. Well, any time of year. Goodness knows how much time I spent in that area for work-related meetings, conferences, and teaching classes. I saw these roads at every time of the year.
We stopped from time to time to take pictures. What we enjoyed most was stopping at Summit Lake Camp, sitting on the entry wall, and recalling joy from serving as an “Outdoor Ed” teacher there.
I remember sitting on the same wall and listening to the other teachers advise me on what to expect: how to do the job "really," how to deal with misbehaving kids, and how to maintain stamina, as this job had very long days. As Chuck and I sat on the wall together yesterday, I told him more stories about this special time of my early working career. He was genuinely interested and asked a lot of questions.
Life is short: share joyful memories with the one you love.
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The Joy of Cooking (Saturday, October 24, 2020)
Chuck and I had a video visit with the oncology nutritionist at Johns Hopkins today. She is highly qualified, deeply knowledgeable, and experienced in dealing with cancer patients, especially those with complex cases such as (unfortunately) Chuck has.
She began by asking about Chuck's background related to what his pre-cancer eating was like. I was glad she asked, as that gave me the opportunity to explain how Post Lyme Disease Treatment Syndrome (PLDTS) affects long-term diet choices. Going mostly gluten-free was a necessity for Chuck. I also explained about his gout and about selecting foods that are low in uric acid.
Then she asked simply, "What have you been eating, and how have you tolerated it?”
And off I went again. Since Chuck's release from the hospital, I have been keeping a detailed record of what he ate, how much (in weight or volume), what time, and what reactions (if any) he had.. On top of that, I have been keeping a detailed record of each and every time he went to the bathroom and what happened (#1, #2, #1 & #2, or vomiting) and even the urine color and color and consistency of the stool.
Through the video visit system, I was able to share my records that I had scanned into a PDF document. She looked at it and got quiet. Then a few "hmmms" and "ahhhs," but then… more quiet. After a few minutes, she said, "I have never had a patient's records kept so thoroughly. Wow; impressive."
She mumbled a little more, then said (in general terms for this journal), "Well, I see that you have tried this, that, and this & that. You had this reaction to that, and that reaction to this. You have tolerated this well, but not that. You can eat more of this, but you've cut back or eliminated that due to reactions you had to it."
Then we talked about how I cook and prepare various foods for Chuck. I really love cooking and trying to make new things – anything – for Chuck to eat. The great thing about being retired is that I have lots of time to dedicate to cooking for my husband. Some of these dishes, like gnocchi, take a long time, but can be made in batches that freeze well.
After about 30 minutes of more "hmmms" and "uhhhs," the nutritionist said, “Well, you are doing far better than most other patients I see. You may feel right now that you are still having trouble with some foods, but overall, you are in much better shape than 99% of all others.
"I can see from your most recent blood labs that your levels of vitamins, minerals, and other factors that affect your health and nutrition are in the 90th percentile. Again, 8 weeks post-Whipple, you are really doing quite well. Can I have some of those recipes?"
Well, I guess, I am doing the best that can be done for Chuck, and we have a professional nutritionist to confirm that. She suggested a few things that Chuck should try, like hummus. Other than that, really nothing new. Chuck is doing better compared with others. He feels better now after this consult. And so Chef Guido and I now return to The Joy of Cooking.
Life is short: cook with love!
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The Regimen (Monday, October 26, 2020)
There are so many things going on in planning for Chuck's chemotherapy regimen, I have trouble remembering what I told you, or didn't. Here are some updates...
• Chemotherapy for Chuck begins November 4. It was delayed from today, Oct. 26, by the oncologist, when he examined Chuck in person and realized he needed more time to gain strength. • A nurse practitioner has prescribed a number of drugs, all for use while Chuck is on chemo, to deal with the side effects, plus some to treat the side effects of the drugs for the side effects. We are grateful that Chuck’s insurance covers the cost of these drugs and also the highly-specialized-chemo drugs that will be administered. • The chemo regimen that Chuck will be on is a "cocktail" of four drugs, one of them which has "some benefit" for squamous cell carcinoma with peripheral nerve involvement (SCC-PNI) – the tumor on Chuck's scalp. • NO! Chuck never got sunburn on his head! He always wore a hat. But this skin cancer is odious and can lurk for many, many years. Chuck's oncologist said that there are some studies that suggest a connection with having a pancreatic cancer and more growth of SCC. • MOHS Surgery for the SCC-PNI cannot be done now, because the chemo for the pancreatic adenocarcinoma takes priority. Experience and tests reveal a high potential for metastasis (spreading) of the pancreatic cancer, so it is urgent to begin chemo for that as soon as Chuck can realistically begin. • I'm a little more hopeful that we will buy some quality time for Chuck, to the tune of a few years. • The chemotherapy that Chuck will be getting isn't like what some of your friends may have had for other cancers. It is not "get it for an hour or two, have a day of side effects, then go about your daily life." The chemo regimen involves six hours of in-hospital infusion through a permanent port of these drugs in sequence, immediately treating major side effects such as anaphylaxis (a real life-threatening potential), then sending him home with a pump through which he will receive two more days of chemo. Chuck's chemo regimen will be for three days on, 11 days off, for six months. This ain't no walk-in-the park and "la-la-la, let's go play on the off days" treatment! • The chemo treatment that Chuck will have is the most intensive and hard-hitting approach compared with chemo treatments for other cancers because this is pancreatic cancer, about the worst cancer there is. • Spreading out chemo infusion over three days instead of getting it as a jolt all at once may help reduce the worst side effect of nausea. Maybe. And may be more targeted to micrometastatic cancers, according to some Oncology Journal articles I waded through (four times to understand.) • Medical marijuana has been approved in Maryland, and yes, we have taken the necessary steps and have acquired the legal approval to get it. We hope it will help with nausea, so Chuck can avoid anti-nausea steroid drugs, if at all possible. • The SCC-PNI tumor on Chuck's head is growing back. Twice each day, when I change the bandage over the scalp area where the surface tumor was cut off, I observe three things: the area is not healing, it is bleeding, and the area is raising up again with more SCC tumor. Gosh, this is frightening. I am working with Chuck's doctors to check if Chuck should be taken off Eliquis (a blood thinner prescribed for a DVT that Chuck got after Whipple surgery). We have to do something to improve healing and stop the bleeding. • I continue to meet online with my therapist who helps me stay strong and well-organized. It is critical for my well- being, and I am not embarrassed to ask for the help. • Speaking of me – for a moment – Yay! The Chron’s treatment is actually working. I have no symptoms or flares. My physical strength and stamina have significantly improved.
Chuck has agreed to undergo a major chemical assault his body to treat and try to hold back the spread of a very aggressive cancer. But we each realistically know that the pancreatic cancer will, regardless of treatment, recur. One, two, or three years from now. Recurrence will be detected through frequent blood labs and CT surveillance. When recurrence happens, it will be inoperable. Chuck has Long-Term Care Insurance and plans to use it for in-home care through hospice. He has a plan, as have I. It's best to talk about it openly, so we can plan and enjoy the life we have, today.
Life is short: find joy today in keeping well-organized!
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Warmth and Affection (Thursday, October 29, 2020)
My beloved husband, a wonderfully warm and romantic man, has been continuing to recover from surgery and preparing for the strong chemotherapy. He still is struggling with retaining enough food for nutrition, but he tries and tries.
He smiles as I prepare all sorts of different foods that he can eat. Five small meals a day continue to be the norm, with five (or more) visits to the bathroom to "deposit" what he eats an hour after each meal. Regardless of that, he is gaining some more energy. He is walking regularly and not napping spontaneously.
However, both of us grow tired through the day, so by the afternoon, we both need a nap. We have been lying on our bed together, looking at the change of colors on the trees in the forest behind our house. We lay closely, snuggled up to keep my husband warm (with such weight loss, he gets cold easily). I lay my head on his chest and hold him closely.
He reaches over and scratches my back, holds me, and we ... just ... relax ... together, nestled in each other's warmth and enjoying our mutual affection.
These are special and joyful times for us. This week has been special, very special, to love. Just to love. He falls asleep in my arms, and I listen to his gentle breathing. I watch his chest slowly rise and fall as he lets out little snorts that amuse me. I do the same from time to time, and he tells me that he loves to watch me sleep in his arms.
An hour or so of this daily recharge of our affection, warmth, and indeed, of our love.
Life is short: love the one you married.
More Prep Steps Completed (Friday, October 30, 2020)
I mentioned in a previous journal entry that Chuck and I are preparing for chemotherapy to begin on Wednesday, November 4. I have taken training and we have "onboarded" supplies to have on hand for me to continue chemo at home for two days following each hospital treatment session. That will allow us to spread out the treatment, so it may not produce such extreme side effects as it might if given full-dose in one day.
I have also picked up a slew of medications to have on hand to treat more chemo side effects, which could include nausea, vomiting, fatigue, sleeplessness, diarrhea, constipation, loss of appetite, sensitivity to cold, and worsening peripheral neuropathy. Or none. Or some. Or all of these. "Each patient responds differently," we hear from everyone.
Some of the traditional medicines for side effects, especially for nausea, are corticosteroids. Chuck has an awful history with this class of drugs. He was treated with them during the worst of his Lyme Disease illness. Essentially, the steroids had the opposite effect: instead of reducing inflammation, they made inflammation and resulting joint pain much, much worse.
With that history in mind, Chuck's oncologist also prescribed some drugs for the side effects of the steroids. This is just kinda mind-boggling. A drug to treat side effects of a drug given to treat side effects. Wowzers....
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We did our research and learned that chemotherapy for pancreatic cancer involves a multi-drug "chemo cocktail" that takes longer to administer and is more likely to cause serious and longer-lasting side effects than some other forms of chemotherapy. Most other cancers are treated with one chemo drug at shorter intervals.
In August, when we first learned that chemo was highly likely to be required, we discussed another approach, legal in our state. We applied to the Maryland Cannabis Commission for a permit to acquire medical marijuana. We know this is controversial, but we also know that CBD and THC in marijuana is known to help cancer patients undergoing chemo, especially with nausea, sleeplessness, and appetite. It can serve as a substitute for corticosteroids. Chuck received the approval from the Maryland Cannabis Commission in September. The next step was to meet with a licensed provider: a physician who accepts a patient and certifies that he qualifies to be treated with medical marijuana. We met with that provider this week. His acceptance and approval resulted in Chuck being provided a "Medical Marijuana" card.
I also received permission as a caregiver assigned to Chuck to be with him at the meeting. And that's good, because we needed to talk with an experienced professional who knows what kinds of cannabis are most applicable for different symptoms. Chuck won't talk with anyone... just won't. I'm the talker in the family.
We made a trip to a cannabis dispensary today. It was, ahem, interesting. I met and spoke with the owner of the dispensary, who really knew his stuff and asked the right questions. He suggested one edible to try for now, saying that this particular product has worked well for other pancreatic cancer chemo patients he has worked with.
So now we are fully prepared. Gummies in the safe at home.
Life is short: take all steps... all steps... to do what can help.
Oddly Emotional (Sunday, November 1, 2020)
Not much to say... we are enjoying peace and quiet, relaxation and joy, and I am being oddly emotional over little gestures of Chuck's and my community's grace.
For instance, I got unusually emotional yesterday when the doorbell rang and I found a small group of visitors dressed in funny costumes handing ME treats. Ahhh, snickerdoodles, my weakness and favorite treat! It was my senior pals, visiting to say that they missed me, and suspected something was wrong with Chuck because I had “gone quiet.” It’s true that I wasn't communicating with them very much, but the reason why is not public news. As they are a loving and inclusive bunch, they also gave me a home-made pumpkin pie. Someone somewhere told them that Chuck really likes pumpkin pies, and voilà!
As I was speaking with my visitors on the front stoop, a FedEx truck surprised me by stopping to deliver a package. I hadn't ordered anything. I opened the box and found a top-of-the-line potato ricer. I had been complaining (I thought, to myself) that the old potato ricer I had was warped (yeah, I bent it) and was not working well. It required a huge amount of force to operate and left too much potato in the cup despite my best efforts. My hands ached after I used it. Once again, Chuck solved the problem after analyzing the predicament. "Merry Early Christmas!" was his remark when I asked him about this delivery. I sniffled and shed a few tears again. Then made him some more gnocchi and a potato pizza for lunch!
Even the smallest gestures can make me cry, sometimes laughing through my tears, like funny stories and photos from Roberta, of snow in Boston this early in the season. My friend in California is so loving in her regular comments, sharing quotes and poetry filled with touching thoughts. Love ya, Pat! Sniffle, sniffle!
Chuck hugs me and gives me a kiss often, just because, and I cry again.
Today, I had to go out and run more errands for my beloved. Pick this up here, that there, so forth and so on. In each location, friends waved, greeted me warmly, and shared smiles. On arrival home, I saw that Chuck had vacuumed the carpets in our upstairs rooms – all of them.
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I lost it once more.
This is what I have meant about loving the community where I grew up and live. It is, after all, my small town, where everyone knows my name. Yeah, it is my Montgomery County where I was born, raised, educated, built our home, and married.
Life is short: gestures... gestures... show those you love how you love them.
Load Lightened (Monday, November 2, 2020)
I have to give credit to friends for lightening my load. I casually mentioned in an idle comment in an email that since it rained on Sunday, I was unable to rake the leaves on my lawn to the front, where my HOA's landscaper leaf vacuum will be coming on Tuesday. So that job made it to Monday's priority to-do list. I have been feeling a bit overwhelmed this year, trying to fit the yard work in with caregiving.
I also had to make an urgent appointment for Chuck to see the dermatologist to have the lesion on his head treated again. That scalp lesion continues to bleed, which isn't good, and it must be addressed before chemo begins on Wednesday.
I also had to arrange approval of a refill of a maintenance drug for Chuck. The day’s list was filling up quickly. However, when I returned from the usual early Monday grocery shopping trip, I saw the leaves all raked and piled up on the street, ready for vacuuming. I saw my neighbor from across the street out front, and called out, "Hey, did you rake my leaves?" I wouldn't have been surprised. The response I got was even more heartwarming.
“No. Just after you left, four guys showed up. They did quick work on your lawn. Did you hire them?" Nope. Just buddies lightening my load. As soon as I can, I'm going to cook a great meal for them at the fire house while they're on duty.
Next, a phone call. It was Keith, telling me he was at our pharmacy. He offered to pick up any medicines I might have waiting. I told him about the refill of the maintenance drug Chuck needed, and he dropped it off a little later.
So, that journal entry titled “How To Help”? As I live and breathe, it's working. Now I have sufficient time to help Chuck bathe and prepare for the dermatologist visit later today.
Life is short: no one is a failure who has friends (Clarence to George in It's a Wonderful Life)
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Cousin Itt (Tuesday, November 3, 2020)
I have named the Squamous Cell Carcinoma with Peripheral Nerve Involvement (SCC-PVI) growth on Chuck's scalp "Cousin Itt." While it is not hairy, it is another aggressive carcinoma cancer tumor, so it is by my own declaration a "cousin" of the adenocarcinoma for which Chuck begins chemotherapy treatment tomorrow.
Cousin Itt II returned aggressively. Ever since its primary mass was removed on September 30, the twice-daily bandage changes I take care of for Chuck have caused me extreme concern. The wound is not healing. During the last two weeks, it bled each time I removed the dressing, no matter how gently I tried to do it. It was not painful, but damned ugly. I couldn't help but cringe each time I saw it. What worries me most is that it began to grow back quickly. By Saturday, it was one inch in diameter, and a quarter inch above the scalp line.
I discussed it with Chuck and reasoned with him that he would have to see the dermatologist asap to have Cousin Itt treated again before he begins chemo. He will become more fragile and susceptible to infection as the chemo treatments compromise his immune system. Cousin Itt from the original Addams Family Reasoning with a testadura is not easy, but in my 27+ years of knowing Chuck, I have learned what to say and how to get him to accept my recommendations, even when he would rather be in denial or remain focused on the fear of the unknown (that is, chemo and potential side effects).
I had been keeping in touch with his dermatologist, who suggested a method of dealing with it – cut it off again and keep changing the bandage twice a day. Chuck must wait for full removal of this deep and aggressive cancer through MOHS surgery because recovery would require months, not days - or even weeks. MOHS recovery would not occur (or would be significantly delayed) while having chemo treatments. Chemo has to remain a priority due to the aggressive nature of the pancreatic cancer (adenocarcinoma). However, the dermatologist explained that one of the chemo drugs that Chuck was approved to be treated with against SCC-PVI may also provide some benefit in treating Cousin Itt.
Anyway, I phoned the dermatologist's office and was able to secure an urgent in- person visit yesterday afternoon. With help from buddies who lightened my load, I had time to help Chuck bathe, and even go out to the backyard briefly for our Annual Fall Photo by the "moonbush." Chuck was a good sport about that.
We arrived at the doctor's office at Sibley Hospital for the 4:30 pm appointment. Cousin Itt II was removed once more. Additionally, "electronic desiccation" was applied, meaning that a tool was used to cauterize blood vessels in and around the remaining open wound after the second tumor was cut off. Hopefully, then, there will be no more bleeding, and Chuck can resume using the blood thinner that is necessary during chemo.
I was there (the magic of a wheelchair giving me caregiver ADA access) and watched. Chuck was a very good patient and didn't complain a bit. Though his scalp was numbed, we could smell the results of the cauterization, which at Our last "us" photo, Nov. 4, 2020 times was sickening. Thankfully, the procedure was rather quick, and we left 50 minutes later.
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We arrived home about 6 pm and the first thing Chuck said was, "I'm hungry! Let's eat!" I prepared some chicken in the air fryer and heated some of Uncle Joe's chicken soup – a guaranteed cure for anything. Oh, I wish. Anyway, Uncle Joe's spirit was with us, and we smiled despite the day's challenges.
Today our calendar is clear of medical appointments, so we intend to take a drive for one last photo adventure, to distract ourselves from upcoming medical stuff.
Life is short: not all cousins are welcome. At least, not any by the name of carcinoma.
Thoughtfulness (Wednesday, November 4, 2020)
I am thanking you, my circle, for your emails that express your love and concern, especially for today, when Chuck begins chemotherapy.
I am especially grateful for a surprise gift from my dear friend in California who sent me a book titled Caregiving, the Spiritual Journey of Love, Loss, and Renewal. She also sent a card that said she used this book during support group sessions she led for caregivers of people with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease.
I can't say that I am fully prepared to be a good caregiver for Chuck, even with the previous experience I had in caring for an elderly uncle and aunt.
That's where my friend’s thoughtfulness comes in. She knows that, too. This thoughtful gesture in sending me the book further demonstrates that my friend knows that I have more to learn, more to do, and more to explore in my caregiver journey.
Life is short: recognize that bonds of friendship go very deep.
First Treatment (Thursday, November 5, 2020)
This is how the first chemotherapy treatment went for Chuck. I don't want to jinx it, but so far, so good.
I took him to Sibley Hospital at 10:30 am yesterday. After dealing with the reception staff (who again talked to me and not to Chuck because he was in a wheelchair), he was checked in and provided with an identification wrist band. Someone came to wheel him away, and due to Covid restrictions, I had to leave. I drove home, hopeful that we were prepared, and that everything would go well.
Chuck called me soon after I got home, to make sure I got home okay. He was worried that I might lose it on the drive home. I was okay. Concerned, but not an emotional mess. Unfortunately, cell service inside the chemo center is bad, so his calls to me dropped frequently. We switched to email for our ongoing communications.
He asked me to speak with the chemo nurse again about administration of steroids. Once again... damn. We had already discussed that thoroughly with his oncologist, nurse practitioner, and another nurse. However, the nurse assigned to administer chemo was a different person and not informed of the results of those discussions.
I called and reached the Charge Nurse of the chemo unit and asked her to consult the notes in Chuck's medical chart where treatment with steroids was documented. "Oh," she said. "I forgot to check there."
Huh?
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This is why advocates are so necessary.
That was not the only glitch-hitch in the process. I was told that Chuck would be able to give me at least two hours' notice when his treatment cycle would be completed, so I would have enough time to get there (with traffic, it's a 45-minute drive). Woops, they forgot.
Overwhelmed with too many other patients? No... "I just forgot" was the reply when Chuck asked for the ninth time. Chuck called me at 4:15 and said, "I'm done, come get me." I jumped in the Jeep and drove as quickly as traffic would allow. I arrived at 5 pm. I had been told in advance by the oncology nurse practitioner that I would be "sent back" for some patient education the first time Chuck was there. However, that didn't happen either. It was so late, all of the oncology medical staff had left already.
Chuck was all alone in the chemo center, waiting for me. I was told rather curtly to wait in the hospital lobby, like I was the reason the receptionist had to wait before she could go home. Fifteen minutes later, he was finally brought out to me in a wheelchair. He looked pale, but otherwise okay. He had the pump secured to him by a strap across his waist and shoulder.
The pump administers the fourth chemotherapy drug, Fluorouracil (5-FU), over the course of 46 hours. He was given the first two hours of it at the chemo center while they observed how he tolerated it (about 10% of those who get 5-FU have a reaction such as anaphylaxis). Chuck did not have an immediate reaction. 5-FU is also the drug that can cause nausea and vomiting, so as instructed, I gave him an anti-nausea medicine when we got back to the Jeep.
Chuck was fine. No nausea at all. At least, not before we got home. Chuck told me later that he was given the anti-nausea drug at the chemo center via infusion as well. When we arrived home, I prepared him some of Uncle Joe's chicken soup and a couple air-fried chicken fingers that he asked for. He drank the broth, but left the soup pasta in the bowl, and by then he did not want the chicken he had requested. He said that the GERD he suffers from was acting up. I think it was the beginning of mild nausea, but whatever, I was glad he ate/drank something. I made him drink another full glass of water, as he told me that with the infusion of chemo drugs, he had needed to urinate a lot throughout the day.
I changed the bandage on his scalp, helped him change clothes, and looked at this pump. It's the size of Spock's Tricorder (5" x 8" x 2"), black, and rather heavy. A long tube comes out of it and goes into the port in Chuck's chest. At his request, I rearranged how the pump was secured to him, with sort of an over-the-shoulder strap made from a narrow nylon strap. I had one on hand from my EMT kit that I keep at home. Chuck was much more comfortable.
We watched an hour of Aussie TV – no news, no politics. Chuck went to bed at about 9 pm. As of 6:00 this morning, all is quiet. I have been listening to him breathe and make those funny little snorts.
We will see what today brings, with a full day of 5-FU. If nausea or other side effects are to happen, today will be the day. The in-home 5-FU chemo will end tomorrow afternoon, at which time a nurse will come to disconnect the pump and show me how to do it for future chemo treatments.
Life is short: be watchful, hopeful, and strong.
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Quiet (Friday, November 6, 2020)
Again, I don't want to jinx it, but Chuck had a restful and quiet night while chemo continued via the pump. The only issues have been a surprising case of hiccups, to which Chuck reacted by insisting that he can no longer swallow any pills, anymore, ever. That's how he gets, my beloved testadura.
With calm determination, I showed him an image on the internet of how the esophagus works, and why tilting the head up while swallowing a pill is important. Chuck usually bends his head forward while taking medicine because he says he gets dizzy if he bends his head back too far. So I had him practice a compromise position with placebos. Yeah, I've got a few "sugar pills" in my EMT kit at home. The practice helped. No hiccups, and all the pills went down. Pills again will be taken as prescribed.
The pill regimen while on chemo at home is complex and time-sensitive. He is on a total of 10 different medicines (not all for cancer; some for maintenance, such as hypertension, GERD, and for BPA, or enlarged prostate). I keep a small pocket timer in my shirt pocket to "bing" at the next pill time. It works great!
What's a "pocket timer?" Well, it's what we dinosaurs without smartphones use. Ha.
Chuck has had some minor diarrhea, again due to the chemo. We've got loperamide (Immodium) for that. He is using the anti-nausea medicines prescribed for him, and other than a little burping, he is not having any gastric issues at all. So far, so good.
I take his vitals 3 times a day while on chemo. All have been within normal limits each time. No weight loss, but also no weight gain, which disturbs me because Chef Guido and I are feeding him 3,000 - 3,500 calories a day! Last night's dinner of crab cake (I bought fresh crab meat when we went to Blackwater National Wildlife Reserve on Monday), potatoes and zucchini (prepared in the air fryer) was a big hit! Chuck loved it and ate every bite!
Today at 3 pm, a visiting nurse will come to disconnect the chemo pump.
Otherwise, we're doing okay. Sleeping well, eating well, and minor, if any, discomfort. We are truly grateful that we could spread out the chemo over three days instead of having it administered all at once, thanks to great health insurance.
Life is short: continue calm!
Day 4 Downturn (Saturday, November 7, 2020)
We were pleasantly surprised that during the three-day course of chemo, Chuck had little, if any, bad side effects. A highly skilled visiting nurse came yesterday and removed the chemo pump from Chuck's chest. Chuck was so happy to have that thing removed!
However, Chemo Day 4 started with my beloved husband telling me when I checked on him at 4 am that he heard me, was awake, and was having stinging pains in his hands and feet. His hands were red. He said these pains began in the night, and he could not sleep much. Lyme Disease damaged his nervous system and left him with peripheral neuropathy, meaning he has little feeling in his hands and feet other than shooting pains. Unfortunately, it seems chemo has exacerbated the peripheral neuropathy. I brought the topical cream that was recommended and applied it for Chuck.
I comforted him, and he went back to sleep (sort of). He woke at 7 am and called out. My home office where I work is adjacent to his room, so it's easy for me to hear him. I emptied his bedside urinal that was almost filled to the top, and I
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helped him dress. He cried a bit and looked really sad, because he could no longer feel his clothing, which led to him dropping the sweatpants he was trying to pull on. Neither could he pull on socks; he kept dropping them, too. This morning was the first time that the peripheral neuropathy affected Chuck’s ability to dress himself. It was one more loss of being in control of himself and his own actions.
At breakfast, I gave him a round of medicines to help with side effects, including the mild nausea he said he was feeling. He ate half of a special gluten-free waffle, drank a glass of water, then went to sit on his chair in the family room. Now he looks glum and disappointed. We had thought that he was doing so well that we were going to take a drive today, to enjoy the good weather we are experiencing. But... ain't gonna happen.
I will keep on top of these problems, and help Chuck rebuild strength and more hope for symptom abatement.
Life is short: give care as thorough planning has prepared me to do.
Arrow in the Quiver (Sunday, November 8, 2020)
Being a Preparedness Guy (after all, I am a professional Emergency Manager), I always look for methods, procedures, and items to have available to deal with issues I may face. From earthquakes to tropical storms to home fires, my "preparedness" by "walking the talk" is legend. As I am facing how best to be prepared to support and assist my beloved husband as he deals with the dual aggressive cancers he has, I have built up the proverbial quiver of arrows to use to manage symptoms caused by the disease or its treatment, including aggressive and prolonged chemotherapy.
Chuck's oncologist prescribed a number of medicines to have on hand to ward off or manage side effects or side effects of treating the side effects. No, I do not give Chuck all these medicines every day – only a few that are either required as chemo adjuvants OR to treat side effects such as nausea or pain. For example, topical Lidocaine cream has helped numb the skin over his mediport so it doesn’t hurt when accessed. He has had very minor and mild nausea, so two mild prescription drugs have helped with that. Immodium has helped with a loose stool.
Chuck did not sleep well two nights ago due to sharp, shooting pains in his legs, feet, arms, and hands. This chemo-induced peripheral neuropathy pain is no joke. I saw his arms twitch several times yesterday, accompanied by wincing, due to the sharp and surprising pain. Chuck describes it as feeling like he is being jolted by electricity.
We also have been noticing more weight loss. Chuck will eat, and his appetite is okay. Not great, but he’s not refusing food. However, he's down now to 139.4 pounds, which is frightening.
So that's when we discussed pulling out the arrow in our quiver that is, shall we say, non-traditional. Yep, medical marijuana. Chuck got some as a part of being prepared, and we've been hanging on to see when the right time would come to use it.
Last night, Chuck took half a dose of a hybrid THC/CBD gummie, and slept through the night without pain, waking only to urinate. His arms and legs are calm and look a healthy pink today. The half-dose also improved his appetite. Yesterday, he wasn't hungry. This morning, he ate a good breakfast: an egg and a gluten-free waffle! Chuck considers this a success. So do I.
While medical marijuana is controversial, it was legalized for sound reasons. Chuck is proof – it works. With last night's positive experience, Chuck said that he does not need anything else today. He has no nausea, no pain, no redness of his hands. His energy level improved, too – to the point that he scurried to tidy up the basement. I think we will try to sit in the back yard and enjoy more of the sunshine and warmth of our unusually pleasant weather.
With his improvement today, this Preparedness Guy definitely recommends: load in all arrows you can find for your quiver.
Life is short: Those best prepared are more resilient and able to weather any storm.
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PDAC (Sunday, November 8, 2020)
PDAC is: pancreatic ductal adenocarcinoma (abbreviated PDAC). This is also known as exocrine pancreatic cancer – the worst of the pancreatic cancers. It was PDAC that Jeopardy! host Alex Trebek was diagnosed with in July 2019, and that caused his death on November 8, 2020 (day of writing this entry).
PDAC is also the pancreatic cancer that Justice Ginsburg was diagnosed with in June 2019 and died from on September 18, 2020. It is also the type of cancer that Patrick Swayze was diagnosed with in June 2008 and died from on September 14, 2009. You might say, "Wait a minute. Apple founder Steve Jobs had a pancreatic cancer, too, and lived five years!" That’s because he had a different kind of pancreatic cancer – neuroendocrine tumor, or PNET – which carries a more favorable prognosis and longer survival time than PDAC.
Chuck will continue through his prescribed course of chemotherapy, which is similar to what Alex Trebek labeled "surprising." This course is (currently) prescribed for 11 more treatments, administered every other week through May 2021. However, I can't help but do the math, and it’s harsh. I want our time, from Chuck's diagnosis in July 2020 to maybe roughly 15-16 months after that, to be as close, supportive, enjoyable, and pain-free as we can have them.
This is the kind of news that continues to shock and frighten me. Chuck has a different, more realistic, outlook – "I'll be here as long as I can, but my days are numbered. I love you, what's for dinner?"
Life is short: too short. Too damned short. Where's OC?
Intuition (Monday, November 9, 2020)
Yesterday I wrote about PDAC, the type of pancreatic cancer that Chuck has. It is always terminal due to a high recurrence rate of tumors in the kidneys, liver, or lungs. In agreeing to go through intensive chemotherapy, Chuck is buying time to be with me as long as he can.
I have been trying to remain focused, calm, and supportive. But when news of the death of Alex Trebek from this same disease was announced, it hit me hard. I lost it again. Chuck had to hold me again, and reassure me that he understands what will happen, and that he wants us to enjoy what time we have and celebrate the joy we have had in our 27 years together, including the ultimate of "never would have happened" – being married in the county and state of my birth in our county courthouse.
I have to credit once again my EMS work partner, Keith, for his intuition. He knows how sensitive I am. He knows how I react and respond to various news items and information. My family and close friends know that too, and I am grateful for their love and support as I care for my beloved husband during the remaining time we have together, however long that may be.
When Keith heard that Alex Trebek died of the same type of cancer that Chuck has, he knew that I wouldn't take it that well. Not that Mr. Trebek meant anything to me; I didn't know the guy. But the very fact that he was diagnosed with PDAC, had chemotherapy, recovered enough to go back to work for a while, but then ... wham ... tumor... then death.
Keith told me that he called me and got my voice mail. At the time he called, I was meditating in the garden. Being the concerned and persistent guy he is, Keith decided to come to the house. He found me awash in tears on my meditation bench. He sat next to me for a while, then said, "Go clean up. Some of our buddies will be here in about 15 minutes, and they're taking you to have dinner – outdoors on their back deck." At first, I protested, but Keith knew, just knew, I needed a break.
We went into the house and Keith explained to Chuck what was going to happen. Chuck supported that, for me, knowing I needed a break because I was a mess. Just a mess. I can be better support to him when I am mentally stronger. Chuck
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knows that. I got out some home-made gnocchi for Chuck's dinner. He said, "I know how to make it – go! Go have dinner with your friends! Now!"
I heard the rumbling diesel engine of a fire truck out on the street. They gave me a ride in the truck to the station, with Keith following behind. No lights and sirens – this big fire truck in the neighborhood was enough attention already! I enjoyed a nice barbeque at the fire station and listened to the stories that firefighters and medics tell. Keith and I shared some of our most memorable stories as well. For an hour, I was elsewhere. A break; a much-needed break.
Keith drove me home. I found Chuck napping in his recliner. I offered Chuck more to eat, but he declined. The chemo side effect of "metal mouth" makes food very unappealing. I cleaned up the kitchen, and we went to the basement to watch Aussie TV for a while.
I keep reminding myself – I am prepared and am resilient. I can get through this, but not alone. I really rely on support of family and friends. I can't do it without you.
Life is short: love intuitively.
Two Hobblers (Tuesday, November 10, 2020)
Important lesson – do NOT let your husband move furniture, especially without telling me! He is not supposed to lift anything more than 10 pounds, and he insists, "All I did was slide it," but his furniture moving caused this extreme klutz to clonk his sock-covered right foot on the leg of an old, heavy, solid oak coffee table. That "clonk" to my unprotected foot broke my little toe! Ouch! Now I'm hobbling around, slightly disabled.
Chuck moved the coffee table in the basement while tidying up the other day. There really was no need to move the coffee table, but Mr. Everything Has to Look Nice insisted that the table was not symmetrical with the carpet and had to "line up." I don't know where he gets these ideas, but he's always been that way. He moved the table about six inches.
Then I, Mr. Assume the Furniture is Always in the Same Place, walked my usual path from the stair landing to the back of the basement, and whammo! clonk! followed by yelling, screaming, and jumping up and down. That six-inch move of that coffee table put the darned thing smack-dab in my usual path of travel! I know most people look where they're going. Not me, I’m Mr. Assume, remember?
That happened Sunday afternoon. At first I thought I had just stubbed the toe, but on closer examination, I can tell it's broken. All I can do is tape it to its neighboring toe, keep it elevated and iced, and not walk on it. I do that for a few hours each day and evening (and elevate it while I sleep). But I also pulled on some comfortable old lace-up work boots that give ample room in the toe box so I could continue to take care of Chuck. Gosh, it hurts. But my pain doesn't come close to what Chuck is experiencing.
Chuck is having significant problems with peripheral neuropathy pain from the chemo. He did not sleep much and was awake most of the night. Medical marijuana soothed the pain for a short while, but its side effects are bad enough that Chuck can’t use it anymore. The MMJ side effect of severe "cotton mouth" is so bad, he is refusing to eat solid foods. He is not producing saliva, so he can't chew or swallow. He is only eating apple sauce. That isn't good.
We've got a call in to Chuck's oncologist's office to request help to treat the painful neuropathy symptoms. He can't use NSAIDs such as Ibuprofen, because he is on a blood thinner. He also cannot use acetaminophen, because it causes severe Tinnitus (and also just doesn't work for Chuck anyway.) Neither can he use Gabapentin, a traditional drug for neuropathy, because it causes hallucinations. We don't want opioids. We are asking the oncologist for alternatives.
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They know that chemo patients have this side effect. We were warned about it. But of the medicines that were prescribed in advance and we have on hand, none of them were prescribed to treat neuropathy.
Such is our update from the home of "two hobblers."
Life is short: hobble carefully (and do NOT let your Spouse move furniture and not tell you!)
UPDATE: The oncologist's nurse practitioner prescribed two more drugs to treat the neuropathy (both short-term and long-term) that I was aware of after ruling out two others that came up in a phone call discussion. During that call, I pulled up Chuck's long list of 15 years of drug history, including how each drug worked, didn't work, or any side effects. The oncologist’s NP said again, "I haven't worked with a caregiver who has as thorough records and history as you do." Yep, it's what I do. Now, off to hobble to the pharmacy.
Walking Him (Wednesday, November 11, 2020)
Chuck had the lowest day/night of his first post-chemo recovery period on Tuesday (chemo day 6). He continues to have significant shooting pains in his arms, hands, legs, and feet from peripheral neuropathy, exacerbated by one of the chemo drugs. We were warned about it but were not prepared for how bad it would be.
By yesterday afternoon, Chuck was writhing in pain. He could not sit still or lay down because those positions made the pain worse.
After consultation with the oncologist's nurse practitioner, I picked up two additional prescriptions for him. One of them has mild sedating properties, so when it took effect, he was able to rest a little. However, the second drug, which was supposed to calm the nervous system, actually made the shock-like tingling return, and he even was twitching uncontrollably now and then.
About 5 pm, Chuck said he was hungry and asked for some fish and mashed potatoes. I prepared it, but as soon as he sat down to eat, he got up and ran to the bathroom with an attack of nausea. He then said that he could not eat anything.
A little while later, he ate about a cup of mashed potatoes and his fourth cup of apple sauce, but that was it for food (he is drinking plenty of water).
The shock-like tingling was getting worse. We found that walking relieves the worst of this pain. He was so weak; he accepted my help to walk by his side... around and around and around.
We walked, and walked, and walked, and walked, and walked, and walked, and walked, and walked, and walked ... until my broken toe started to scream such that I had to take a break (and take my fourth dose of Excedrin for the day).
Chuck and I walked for hours through the night. The last dose of the sedating prescription combined with how tired he was from lack of sleep the night before – combined with very low blood counts driven down by the chemo – finally wore him out. Chuck sat on the couch in our basement, and in a few seconds, fell fast asleep. I adjusted pillows for him and covered him with a blanket. He continued to sleep.
I went to another couch, adjusted more pillows, and cuddled up under two of Mom's Afghans she crocheted for me. I was out like a light in a few seconds. Every now and then, I would wake and listen to Chuck breathe, with a little nightlight letting me see his chest rise and fall. Twice during the night, I helped him find his urinal and pee, but each time, he fell back asleep and I did too, gently comforted by listening to those little piggly snorts Chuck makes when he is sleeping deeply.
We both slept peacefully on the couches in our basement until 7:00 this morning. Chuck looked a bit better and said that the tingling, shooting pains had subsided. Not completely gone, but tolerable. He ate one waffle for breakfast.
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Let's see what this day brings – starting with joy to share with my beloved husband, and admiration for his courage in buying more time to be with me.
Life is short: walk with your Spouse at your side.
UnBirthday (Thursday, November 12, 2020)
Today marks what I called on Facebook Chuck's "circle-of-the-sun" anniversary. The last thing he wants is any remark about a "happy birthday." But again, since he is not a social animal and does not use any form of social media, he will not know who has, or has not, wished him a "happy birthday."
But to be clear, he really dislikes that greeting for obvious reasons.
Last night, we had another one of "those discussions," where Chuck said, "This will probably be my last birthday, so let's just have a quiet day at home. You can make me some gluten-free cupcakes and my specially requested 'potato pizza' if you want, but that's it." Fatalism or reality, this is what I live with. Saying anything else comes across as contradicting him, which makes him angry. The last thing I want to do is fight.
Chuck is not depressed. He knows, as I do, that his form of pancreatic cancer and its stage leaves him with a significantly shorter life span (he did the "PDAC math" also). My objective is not to dwell on the negative reality, but to find joy for Chuck each day. I will cook... I will love... I will just be with him... whatever he would like.
I made him a greeting card with one of his most favorite recent photos of himself, that I share here – from Kona, Hawaii. I call these pics "my Hawaiian Hunk Series." He really enjoys seeing himself as he very recently was (but knows he will never be again, due to a long surgical scar from chest to belly button and significant weight loss that will not be regained).
He was prescient in asking me to take these pictures in March during our trip to Hawaii. Now, after Whipple Surgery and losing more than 30 pounds, he looks at himself in the mirror and is aghast at the frail ghost he is viewing.
He had a less miserable day yesterday. He ate better, too. No nausea and less, though some, peripheral neuropathy pain. Unfortunately, one of the medicines the doctor prescribed for him on Tuesday to treat the neuropathy pain made the pain worse, so he is refusing to take it anymore. The alternatives to that drug are not acceptable either, so Chuck has decided just to suffer with reduced, but not eliminated, severe PN tingling/shocks.
We have an in-person meeting with the oncologist tomorrow. I have written a succinct and clear message about the molecular toxicity of Oxaliplatin, the most potent and powerful of Chuck's chemo drugs. Yeah, I've been learning from my course that I am taking, and look forward to a discussion with the oncologist about choices of chemo drugs and their side effects and ways to reduce them. I've been "practicing" on Chuck, and he says, "Man, I married a scientist advocate!"
Whatever I need to do, I will. After all, I want to celebrate another "circle-of-the-sun" anniversary with Chuck one year from today. Life is short: advocate with science.
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Can’t Help (Friday, November 13, 2020)
Today is not good, and I have no good or happy la-la-la news to share.
What I can't help with frustrates me and makes me seriously unhappy.
First of all – for me – I was asked again if I could serve as a fill-in medic for the fire department as I did in April and May. However, since Chuck is immunocompromised while enduring chemotherapy, and as I am his only caregiver, I cannot accept the risk of Covid-19 exposure. Even though I would be assigned again to "non-Covid" runs, I just can't help this time. They understand, but it's hard for me not to help and serve my community in a meaningful way.
Now for Chuck. He can't sleep. Nothing doctors have prescribed, or we have tried as alternatives (over-the-counter medicines + cannabis), has helped.
Chuck is constipated and insists that Senna "doesn't work." Yet he wanted me to find Senekot Gummies (since he insists that he can't swallow capsules and hates liquid laxatives). I chased all over (six pharmacies), with no luck. I finally ordered them on-line for two-day delivery.
Chuck insists that any type of pancreatic enzyme that he is supposed to use for a year following surgery "doesn't work and causes diarrhea." Not really, but no reasoning with him about this, by me or any medical professional, convinces him otherwise. I've given up on that one.
Chuck has a LOT of gas that the strongest Simethicone is not helping. Trust me, I have adjusted his diet a LOT to eliminate anything that could be contributing to the gas. I have tried to explain to him that gas is a sign that the enteric bacteria are helping with digestion of food, but Chuck thinks something is wrong, and when he gets that way, his level of testadura reaches new heights. He says, "The surgeon screwed up the Whipple procedure, and she doesn't know what she's doing."
Not really, but when he's miserable, he lays blame everywhere, including on me for "not trying and not caring." Those words hurt, especially when interlaced with colorful profanity. When he says those things, I just walk out of the room. There is no reasoning with anger, frustration, and actual bad symptoms of discomfort and pain.
We were scheduled to have an in-person visit with the oncologist today. I have made a long list of questions. We'll see what happens. Chuck has convinced himself, "No one cares, I'm going to die anyway." (See note below; visit was postponed.)
Uggghhh... the hardest part of caregiving is dealing with the mental state of your loved one, especially when he will not get mental health help, will not participate in a support group, has no friends of his own, and hates interacting with people anywhere, any time.
P.S.: I am still working with a therapist weekly for myself, and he helps me recenter and refocus a lot. One limping, broken- toed step at a time....
Note, Friday PM: Chuck bailed from seeing the oncologist today. He has rebounded to a loose stool from yesterday's constipation. He did not think he could endure the long ride to the hospital without having an uncontrollable bowel movement. After a lot of work, we now will see the nurse practitioner instead of the oncologist on Monday afternoon. The oncologist is not available and will not do a video visit follow-up. Chuck thinks now more than ever that the oncologist doesn't care about him. More fatalism can be heard in much mumbling that I try to ignore.
Life is short: love the hardhead harder.
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Applying New Knowledge (Saturday, November 14, 2020)
Chuck had a quiet night, though he is still struggling to get adequate, restful, quality sleep. Yesterday, when he told me that he did not feel up to seeing the oncologist because of a loose stool and I had to cancel the appointment, I began a conversation with the Nurse Practitioner in the Hopkins Oncology practice about several concerns.
(Warning: this is long and technical/wonky)
First: the sleep. We reviewed what Chuck has tried, what worked, and what didn't. I was up front about the medical marijuana. The results of its use were consistent with what the NP had heard from others. She thinks that we were right to "take a pause" on MMJ and try other approaches.
We had a long, long discussion about drugs in the benzodiazepine family. Some of you may have heard of "bennies" in old- fashioned drug lingo. Yep...With due consideration of all the medicines that Chuck has been prescribed before and what doctors have prescribed today, we discussed at great length the pros and cons of benzo drugs as well as others in different drug classes and families.
We discussed, but quickly dismissed, any drug in the opioid family. We don't want them, and when we have had them for real pain in the past (such as when I broke 3 ribs or for Chuck post-surgery), we have used them as directed and only when absolutely needed. We turned in any leftover opioid drugs to a drop-box at the district station of our Police Department to get unused/unneeded opioids out of availability for potential misuse or overdose.
It seems that Chuck's sleep issues are two-fold: digestive and anxiety. Of course, he denies anxiety, but let me tell you, it's there. With his cortisol levels, it's there. I know what to look for in behavior and vital signs, including elevated heart rate and blood pressure.
We've got the digestive issues under control: the yo-yo between constipation and diarrhea seems, at least for the last 36 hours, to be settling down. So back to benzodiazepine drugs. This class of drugs can help both with insomnia as well as anxiety in the right dosage at the right time. There are at least five drugs in this class, all with different direct and indirect effects. We settled on one, and it was prescribed.
Unfortunately, when I went to the pharmacy last night to get it, I found that the pharmacy was closed because some stupid fool who refused to wear a mask was in the store and was coughing and sneezing such that it triggered immediate closure for deep cleaning. I returned to the pharmacy this morning and picked up the drug, which is a Schedule IV Controlled Substance.
To be extra, extra careful, I also picked up a prescription of Narcan. While Chuck is not using any opioids, he has a Schedule III drug available (in the just-in-case drug box). A combination of that Schedule III drug plus this one could cause a serious depression of breathing that would necessitate giving him a dose of Narcan. If that were to happen, I would also call 9-1-1 and send him to the ER, per state and county protocols. I do know what I'm doing per training protocols.
Second: Back to discussions with the Nurse Practitioner – we also had a deep-dive discussion on molecular toxicity of chemo drugs, and their side effects.
Chuck is insisting – with my full support – that he will not endure the level of pain he suffered with from peripheral neuropathy exacerbated by Oxaliplatin, one of the most powerful drugs that Chuck was given in his first chemo treatment.
I did not try to second-guess the oncologist's choices of chemo drugs, but I do have valid concerns about the concentration and duration of the dose of this particular drug. Can it can be reduced to ward off the really bad peripheral neuropathy side effect without serious detriment to the anti-microscopic cancer cell benefits this drug provides? It is particularly these microscopic cancer cells that need to be knocked out, because it is they that cause metastasis (spreading) and tumor(s) to reoccur in the liver, kidneys, or lungs.
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The nurse practitioner understands this, and has agreed to discuss the chemo drug mix, duration, and concentration with the oncologist before we have the scheduled in-person visit with her on Monday.
The nurse practitioner was somewhat startled when I used certain terms that reflected higher-level learning and understanding of molecular toxicity. It was then that I told her that I have been taking an on-line course on that topic.
Today, my "one thing" goal is to get Chuck to eat more and get a good night's sleep tonight. And keep the Schedule IV and III drugs separate (the III drug is now in a locked box).
Life is short: apply what you've learned, and using diplomacy, win over medical professionals.
Downturn (Sunday, November 15, 2020)
Chuck's vitals are not good today, and he looks worse, paler, and is weaker. He is retaining urine and what he eliminates is dark. His BP is low, and his temperature is 99.5, which is not quite enough to trigger a requirement to go to the ER immediately.
Chuck has lost another 4 pounds in the last four days. He is not eating much solid food, though he is drinking water and Ensure.
I am worried.
I spoke with the Medical Oncology triage nurse on duty at 8 am today. We are waiting and watching. She doesn't think his symptoms are bad enough for me to take him to the ER.
I am worried.
Unless things change, we are staying home. I will keep vigilant.
Life is short: too damn short. This just isn't fair!
Withdrawal from Chemo? (Sunday evening, November 15, 2020)
We feel we have been terribly let down by the Medical Oncology Dept. at Sibley Hospital. After contacting them on Sunday morning about a possible infection, we had no further contact from anyone there. We were promised call-backs that never materialized.
Chuck still has a mild fever, but not bad enough to go to the ER. He also has symptoms of a urinary tract infection, but I'm only a PhD, not an MD, so I can't really tell.
As his overall state of health continued to decline on Sunday, he told me at about 4 pm to call off the next chemo infusion scheduled for Wednesday. He also asked me to cancel the trip to the lab tomorrow for the pre-chemo lab test that is required. He feels crappy and doesn't think he has the strength to go to the lab.
I sent a message to Chuck's oncology team, telling them that Chuck needs to be seen by a medical professional about a possible infection and get it treated as necessary. I also said that Chuck will not agree to have his next chemo infusion on Wednesday, and that he asked me to cancel the lab draw on Monday.
Further – and this is true but hurts a lot to say – Chuck thinks that since he has pancreatic cancer, which is virtually a death sentence, no one cares about him since he is dying. I conveyed that in my email to his oncologist as well.
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Chuck now is saying that he wants to enter end-of-life care. I had a reasonable discussion with him about that, and he understands that he is not eligible for hospice until a doctor confirms he has no reasonable chance of recovery and a return to a more normal life. If Chuck withdraws completely from chemo, that may happen sooner than it would have otherwise.
Chuck's oncologist (and team) needs to know how Chuck is feeling, both mentally and physically, and that he thinks that his care is nowhere near what was promised. I am so angry about this, I could scream.
While Chuck's BP continues to drop, mine was up to 160/90 until I applied some meditation techniques, took many deep breaths, and calmed myself down. This just should not be happening....
Life is short: ARRRGGGHHHH!
Yeah, I Know (Monday, November 16, 2020)
This is a brief update after what I wrote on my last journal entry about Chuck considering withdrawal from chemotherapy.
This is what I know and what we will do today.
I know, really know, that a UTI cannot be ignored, IF this is what Chuck truly has. That's why I was trying to contact his hospital's oncology on-call provider all day on Sunday.
I know what must be done, including having the right tests ordered. He only has a standing order at a lab for a CBC (blood count), which would not inform a doctor about a UTI which requires urinalysis. Hopkins/Sibley has an in-house urgent care external to the ER. All my "banging on the door" (by phone) yesterday revealed that they do not attend to patient care during off-hours unless something is "ER-worthy," and this situation is not. The ER is the only place available on weekends for patients undergoing chemo to get labs and get an evaluation to determine what is – or is not – going on.
But during a pandemic with positive Covid-19 case counts rising here (as well as everywhere else), the absolute last thing we want to do is go to an ER.
Anyway, long miserable story short, I received a reply to the message I sent to the oncology team last night from the nurse practitioner promising to get Chuck scheduled for an urgent care visit today at Sibley Hospital, including labs that they can do right there so we can avoid a second trip to a separate lab. We will get Chuck evaluated and treated as necessary this morning. We're at the mercy of Sibley's Oncology Department to get this situation under control.
On top of trying to schedule care for the possible UTI, I am dealing with Chuck's "give up" mental state. I can understand where he is coming from. The chemo infusion for pancreatic cancer is among the most harsh of all chemo treatments out there. Infusions of intense and hard-hitting chemo drugs over 46 hours is incredibly difficult to tolerate. We saw how bad the side effects were – and the chemo cocktail must be adjusted, especially to lessen the extreme peripheral neuropathy pain.
Chuck is so weak. It really hurts me to see him so tired, feeble, and frail that he needs a lot more physical assistance that he didn't need just yesterday. He can't handle another round of chemo treatment this week. He wants to postpone and use the threat of withdrawal to get them to promise to adjust the next round of chemo to lessen the worst of the painful and intolerable side effects.
I don't want Chuck to abandon the treatment, but neither am I going to force him. It's his life, his body, and his decision. As hard as this is for me, I support him in whatever he ultimately decides.
Life is short: I am in Pappa Bear protection mode at its highest level.
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Reset (Tuesday, November 17, 2020)
We had a long day at Sibley Hospital yesterday. I feel that Chuck's situation was finally recognized and treated appropriately. And now I have returned to being not only a caregiver, but also a medic.
After a very difficult weekend, I reached the Oncology nurse, nurse practitioner, and Chuck's oncologist himself, by phone on Monday morning. By describing Chuck's current symptoms (low-grade fever, pain on urination, abdominal pain w/bloating & gas) factually and without hype, I was able to convince them that Chuck needed to come in for a thorough exam, including labs.
The good thing about their Medical Oncology Center is that they have an "in-unit urgent care" set up. That means that they can (and did) provide a treatment room and in-house medical specialists who have the specialized knowledge of cancer patients and chemotherapy supervision.
Chuck was given an appointment for 11 am. I wheeled him in, and after waiting in a long, physically-distanced line, he was greeted and "brought back." I tried to go with him, but the front gatekeepers said no.
I calmly demanded that they ask the oncologist again, because he specifically said that I could (and should) be with him during evaluation and treatment. They were busy and tried to put me off. But I wouldn't budge, while the line of new patients backed up. The only way they could get rid of me was to get an answer – or have me thrown out by security. Fortunately, the former happened, and they buzzed me in.
I found Chuck sitting slumped in his wheelchair all alone, parked in a waiting room. He lit up when he saw me and said in a tremulous voice, "You're here! You're here!" He was so happy I was with him. He looked so pitiful and sad.
They took us through the maze that is their chemotherapy treatment center. Cell after cell of chemo rooms on both sides of the halls – at least 60 of them, if not more. We were brought to a well-lit area with a medical bed. Chuck got onto the bed. They took his vitals. He did not have a temperature. Chuck could not produce a urine sample. I knew that would happen, because he peed at home before we left without using a cup that I gave him to collect a sample to bring with us. A nurse accessed his chemo port and drew blood for labs.
We waited about an hour, then the nurse who initially greeted us, along with two nurse practitioners, came rushing over. They looked wild, and a bit scared. Their expressions frightened me. We were told that the results of Chuck's blood labs were shocking. They explained that his red cells, lymphocytes, t-cells, hemoglobin, and hematocrit were all exceptionally low. They said that they had not seen such results in a person after one chemo treatment.
They started asking a lot of questions: what he had been eating, drinking, and doing. I had all the answers in my written day-by-day diary. I affirmed that Chuck did not do anything to make his symptoms worse. I also explained in great detail that some of these problems, particularly the extreme peripheral neuropathy and joint pain, were carry-overs from toxic effects of Post Lyme Disease Treatment Syndrome. However, after again reviewing the lab results and the current situation, one of them turned to Chuck and said, "Looks like we'll have to admit you."
Chuck began to cry, "No, no, no..." so miserably; my heart broke.
We were told that Chuck needed IV-pushed solutions of D5W and saline to restore hydration and isotonic balance. And as soon as they could get a urine sample, they would determine if Chuck had a UTI or other problem for which antibiotics would be required. I suggested that they connect the D5W and (later) saline right there, right then, and see if those fluids would enable Chuck to provide a urine sample, to evaluate quickly. They agreed and did so, and also gave Chuck bottles of water that, bless him, he drank – all four.
By 3 pm, with still no urine sample, they did an ultrasound of his bladder. It looked okay, with no blockage. We just had to wait. By about 3:30, Chuck asked me to pull the curtains, and he produced urine in the sample container they left with us.
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I found his nurse, and she immediately transferred the urine into sample tubes and sent it off to the lab. An hour later, the nurse practitioner stopped by again. She said that Chuck's first lab results show signs of a UTI (affirmed!) as well as a possible infection of Candida (yeast.) When natural defenses are suppressed by chemo, sometimes opportunistic bacteria break out. Such was the case for Chuck – not one, but at least two. Sheesh, poor fella.
We were told that since Chuck's intestinal walls were damaged by chemo and are recovering, the best way to treat these opportunistic bacteria was to piggyback antibiotics for them onto the IV fluids. So that's what they did, right then and there. We were finally released at 7:30 pm and were home by 8 with little traffic.
First thing Chuck said when we got home was, "I am hungry... may I have some pastina?" Sure thing, love! Welcome home!
Side note about chemo – Chuck's oncologist said that the chemo approach for Chuck will be changed dramatically, and chemo treatment will be deferred until after Chuck has time to rebuild his blood.
Morning note: he slept okay – not great, but not bad – and looks a little better this morning in his color and his vitals, though still weak.
Life is short: diligence and persistence pay off.
Being His Rope (Wednesday, November 18, 2020)
Chuck has been fatalistic since he was told that he had pancreatic ductile adenocarcinoma. He has been weak, feeble, sad, and frustrated that he has lost so much vitality in a relatively short amount of time. Just eight months ago, he was the Hawaiian Hunk... today, sometimes his head droops because he does not have the strength to hold it up.
Last night, while snuggling with him and pretending to watch TV, it was clear that all the sadness was weighing on him. I saw him crying. He asked me, “Why are you putting up with all of this?” That is when I found the strength to sing him a song by Billy Dean, who I consider one of the most gifted songwriters and singers of love ballads.
I Want To Take Care of You by Billy Dean / James K Jones, 1993
I'll carry the weight of your world on my shoulder I wanna take care of you In the prime of our years till time ticks us older I wanna take care of you.
I'll be your rope when that mountain's too steep Be your hope when the water's too deep I'll share my blanket when trouble winds turn colder I wanna take care of you.
I've got nothin' to prove but the way that I feel It's love but it's so much more For once in my life I know what I am living for.
When the Good Lord takes ya
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He better take me too Because I want to take care of you....
Yes, I know my calling – caregiving for the one I love and fulfilling our marriage vows daily.
Life is short: be the rope of hope.
Changes (Wednesday evening, November 18, 2020)
We had a long-awaited in-person visit with the oncologist supervising Chuck's case. Chuck got another thorough exam, too, which confirmed all of what we've been saying – the first "chemo cocktail" was inappropriate and hit him much too hard. So now the entire chemotherapy approach has been changed.
There are two chemo cocktails that show promise against pancreatic ductile adenocarcinoma (PDAC). The first one, given to Chuck on November 4, is a mix of four drugs, some combined, some given individually, and one given over a three-day period for six hours in the hospital and 40 hours at home for a total of 46 hours of brutal hell. Then the side effects... whammo blammo! The oncologist agreed that this chemo cocktail “wasn't right” based on my thorough notes on reactions and what happened since he was infused 14 days ago.
It is, however, important to get chemo going asap, because PDAC has a really nasty way of recurring quickly. So now Chuck has agreed to have the second approach, which includes two chemo drugs different from any he had before.
One of them is in the form of oral medication (pills) given 21 days in a row, then a week "off." The second chemo drug is given via infusion through his port but is only for 30 minutes once a week each week for three weeks, then a week off. The in-hospital infusion is separated by antinausea meds and saline hydration. The in-hospital chemo treatments will now be just about two hours (instead of six) and will not require a pump for in-home infusion. That's the good part – less time and no in-home infusion.
The bad part is that this second approach, while showing promise, is not as promising as the first approach. Also, the second approach does not have any benefit against squamous cell carcinoma – the cancer on the scalp. When that tumor begins growing again, we'll have to consider MOHS surgery to have it removed once and for all.
But again, maybe not. Chuck is convinced that chemotherapy will not work and his life will end sooner than later. Uggghhh. While we have the physical situation more under control, the mental part has become more difficult.
For me, if I could just stop Chuck from continuing to throw away everything he ever owned, that would help. But that is the one way he can control things, and I understand why he is doing that. If I have to rummage through the trash every morning before he wakes to retrieve things I want to keep, then so be it. It’s either that, or scream, and I won't do that. Chuck is under enough pressure without me yelling at him about silly stuff like filling up the trash can.
Life is short: sometimes, change is good. Sometimes, it's not. We'll see.
Quiet (Friday, November 20, 2020)
Sometimes when I get quiet, it’s because I am occupied with caregiving duties. Other times (not as much now), I am busy in the community. Other times, like yesterday, I just had to take a day off. Rest for my soul and weary body comes seldom these days. A rough two weeks of post-chemo downturns for Chuck has just worn on my nerves. Yesterday, I had to take a break.
I did ONLY what needed to be done –
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* filled Chuck's "pill minder" – a device that opens a compartment at a given time when Chuck needs to take a pill – one pill at 7 am, others at 8 am, others at noon, another at 4 pm, others at 5 pm, and one more at bedtime.
* dressed Chuck, changed his head wound bandage twice, and tried to get him to eat (anything).
*did laundry and more laundry. How do two people who don't go out produce so much laundry?
* tried to make new foods for Chuck – but his taste buds were damaged by the Nov. 4 chemo treatment, plus he is not hungry, so he says, "You can't make it like you used to." Well, no comment.
* meditated for 30 minutes in the back yard.
* chased Chuck to stop him from collecting more "stuff" that he insists must be thrown away right now. Every single morning, I rummage through the trash can and retrieve stuff that Chuck has discarded that I want to keep. He will not let me see what he is choosing to throw away because, he says, "You will cry too much when I'm gone and find these things."
* prepared (or tried to) five small meals for Chuck throughout the day, ranging from hummus to apple sauce to air-fried potatoes to ... well, not much else. Not even Ensure. He says, "Everything is awful; I am not hungry." Chuck has lost another eight pounds! His oncologist’s reaction when told was to shrug and say, "Well, that happens." Arrrggghhh!
* skipped housecleaning. I usually dedicate an hour to keeping after regular cleaning chores, especially since Chuck can't help any more like he used to.
* no phone calls or messages with Johns Hopkins – one full day w/o the pressure of appointment-for-this, change-for-that, meds-updating, etc. etc.
===> and the above things are on a DAY OFF!
I actually did get a one-hour nap in the morning.
Life is short: enjoy the quiet before more intense caregiving sets in.
Updates (Sunday, November 20, 2020)
I do not write much when not much is happening with Chuck's situation, but here are some updates, both good and bad.
1. Cousin Itt II – the squamous cell carcinoma on his scalp – is behaving, so far. The dermatologist scraped it again and cauterized on Nov. 2. I change the bandage over it twice daily. It *may* be healing, OR (I can't quite tell), it may be slowly growing around the edges of the wound, which is about 1" in diameter. Fortunately, it is not bleeding, despite Chuck being on a blood thinner. 2. Chuck finished five days of Cipro and Nystatin antibiotics in high doses that I administer via IV via his chemo port. Chuck now converts to lower-dose oral antibiotics for the next 10 days. I picked up those prescriptions yesterday. The pharmacy knows me by name, now. 3. Chuck is losing his hair, which we thought might have happened earlier. His curly locks on the sides and back of his head, as well as his beard hair, are falling out. The hair loss is caused by the chemo drug 5FU (Fluorouracil) that acts on fast-reproducing cells, such as in hair follicles. He is understandably very disappointed to lose the beard that he has had for 45 years. I think this is a cause of further depression. 4. Chuck is still losing weight. He is now down to 132 pounds. He is so bony, it is disturbing when I help him dress and bathe, but I can't say anything. It upsets him greatly.
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5. Chuck does not like anything I cook or make for him. No longer will he eat gnocchi, pumpkin pie, or potato pizza. I am hopeful the anti-food feelings he is having will diminish once the first chemo cocktail's effects dissipate, which we were told can take six weeks. The new chemo cocktail may – or may not – have similar effects of depressing his appetite. It is not that he does not want to eat, he is just not hungry. I cannot force-feed him. 6. Chuck is STILL throwing things away! Arrrrrrrrrgh! Yesterday when I was mowing the lawn, he was busy gathering and tossing. I spent a half-hour early this morning before Chuck woke up going through the trash and retrieving things I want. There is no discussing this with him. He keeps saying, "I don't need or want this stuff that was mine. You will cry too hard if you have to throw it away when I'm gone... so I am doing this because I care about you." Hard to argue, but a difficult situation to manage. 7. I will take Chuck to Sibley Hospital on Tuesday morning for a lab draw. While his oncologist says that Chuck's disturbingly low blood counts will rebound in just one week, I am dubious about that. If certain levels of blood counts are not reached, then treatment with the next chemo cocktail (scheduled to begin on Wednesday, November 25) will be delayed again. We'll see. 8. Chuck is sleeping a little better, between being better hydrated and using mild sedatives as prescribed by his physician. I will take Monday off from writing and will update this journal again after we get results from his blood labs on Tuesday.
Life is short: be persistently supportive in caregiving.
Another Adventure Awaits (Tuesday, November 24, 2020)
Chuck had blood drawn at Sibley’s infusion center for evaluation this morning to see if his blood counts had improved enough to qualify for chemotherapy under the new cocktail to begin tomorrow.
I was surprised when the oncology nurse called at noon with the news that his platelet counts, hemoglobin, and red blood cells had indeed returned to baseline. That is quite impressive, since just eight days ago, his counts were so low.
However, with five days of my personal case management of feeding and hydration, he has significantly improved. More energy and pep, and conversational. Supportive, too – after I dropped him off at home after the early morning hospital visit and went to a grocery store to get ingredients to make him something he has been craving, Chuck stripped my bed and washed the linens and the rest of my dirty clothes that had piled up in the hamper. He's gotta be feeling better!
With the improved blood counts, Chuck has been cleared to go to Sibley Hospital tomorrow for an infusion of Gemcitabine.
While at Sibley today, we also met briefly with someone at the hospital pharmacy who told us that while we could pick up the second chemo drug in this cocktail (Capecitabine, pills taken orally) from them, we'd have to pay a $200 co-pay. Ouch! Instead, we were referred to CVS Specialized Pharmacy that works with our insurance. The pharmacy provided the drug at no charge and delivered it right to our door. Arrangements made. Done.
We also had a 75-minute conversation with the Johns Hopkins oncology pharmacist this afternoon. Wow. She gave us excellent information and knowledge in a very thorough and professional manner. She also appreciated and welcomed my higher-level discussion about the effectiveness of this drug against microscopic adenocarcinoma. She and I had a "deep- dive" conversation about Chuck's next chemo treatments, including changes to make to his current maintenance medicines, and when (or when not) to take them.
Chuck is feeling ... well, shall I say, "interested?" "hopeful?" "curious?" Definitely not down or depressed.
I think we're prepared, as much as we can be, for this next step. Wish Chuck well as he begins another chemo adventure. Let's hope that this next chemo treatment is not nearly as intolerable as the first one was. Life is short: prepare and look forward with hope.
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Waiting (Wednesday, November 25, 2020)
One of the tests of my patience is the waiting. But that's part of what a caregiver does... waits while his most courageous love is receiving a chemo infusion. So here I am, at Sibley Hospital's lobby, on my laptop, using their WiFi. I am feeling relatively safe, since I am near a door letting in lots of fresh air and no one else is anywhere nearby.
Cell phone transmission within this building is awful. Chuck tried to call me, but the call broke up and dropped. We tried several times without success. I overheard a building security guard complaining that texting does not work, either. Instead, Chuck and I are using email to keep in touch with each other. Messages are going back and forth about delays, approvals, etc. The last one, a few minutes ago, was that chemo infusion has started. It is now 9:15 am. We've been here since 8 am. If all goes well, he may be done about 10:30 or so. I hope. Then home... and we’ll see how he does.
I plan to roast a fresh turkey this afternoon. Bless the soul of my friend who brought us a fresh dressed turkey yesterday.
I made a pumpkin pie and an apple pie. On Thanksgiving Day, I will prepare mashed potatoes, green bean casserole, and a cranberry crisp.
Then I will see what Chuck will want to eat... a little of this, some of that, small meals, whatever he can tolerate.
And of course, wait, care, and love. It's what I do.
Life is short: good things come to those who wait.
So Far, So Good (After infusion, November 25, 2020)
We're home from Chuck's first infusion with the new chemo cocktail. It didn't take as long as expected. Chuck was released at 10 am.
Chuck seemed to handle the infusion of Gemcitabine well this morning. So far, at home, he is concentrating on an on-line history course intently. He ate a good lunch and (so far) has no queasiness. However, he was given an anti-nausea medicine by infusion this morning, so it is probably still working.
Also, we have not yet received the oral chemo medicine, called Capecitabine, yet. It should be delivered to our home later today, and Chuck will begin to take it tonight. That's when we will watch for more side effects, etc. Capecitabine is the pill form of 5FU (Fluorouracil), the chemo drug most effective against both adenocarcinoma and squamous cell carcinoma (Cousin Itt). In the previous chemo treatment, Chuck received 5FU by infusion over 46 hours – this was the drug administered via a pump sent home with him. We were instructed very clearly not to cut or "manipulate" the Capecitabine. He promised that he will try to swallow it; I hope he can. He must take 3 pills after dinner and 3 pills after breakfast, etc., for the next 21 days. If Chuck can't swallow the Capecitabine pills, then we'll have to explore other options, none of which are promising. Let's hope he can choke the pills down. Then we’ll evaluate how he tolerates it.
I was told that if I handle the pills, I must wear gloves. It is toxic and can be absorbed through the skin. Yikes!
He was also prescribed some additional vitamins and minerals, since he is no longer allowed to take a multivitamin. The folic acid in a multivitamin affects absorption of Capecitabine. Further, I now must separate administration of his drug for GERD (Pantoprazole) from Capecitabine by at least 3 hours. I learned that these two drugs interact, and the Pantoprazole can cause Capecitabine to be more potent, and thus cause more side effects, especially nausea.
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Meanwhile, Chuck is finally hungry, and I am preparing foods he craves and wants to eat. Yay! So far, so good.
BREAKING NEWS: This morning while Chuck was in the chemo infusion center and I was forced to wait in the hospital lobby, he was given technical information and instructions that he could not understand. That caused some confusion that we could only communicate about via email. We got it sorted, but it was difficult.
That led me to communicate with the Director of Medical Oncology Nursing to request a permanent exception to the "no visitor" rule when Chuck visits the hospital. I based the request mostly on ADA issues of his physical disability, hearing loss (high frequency hearing problems), and mental health. I just received a call giving me the permanent exception. So now I am good to go with Chuck on each hospital visit! Yay!
Life is short: maintain the positive outlook!
Thankful & Grateful (Thanksgiving, November 26, 2020)
Today is U.S. Thanksgiving Day. We're all supposed to think about what we are thankful for this year. This is hard for me, particularly this year, for understandable reasons. 2020 is not a year for which I have much to give thanks – or at least, so I thought.
Then on reflection, I found I really DO have much to be grateful for this year.
Here goes – my list of my 2020 gratefulness:
* My sisters who are always, always, there for me. I cherish our even closer relationship that began with weekly check-in calls when we were all told to stay home as the Coronavirus pandemic began. It then morphed into more frequent calls and emails of anguish as I learned of Chuck's cancer diagnosis and ongoing caregiving needs. Nothing, nothing can describe how grateful I am for their love and support.
* My brother-from-another-mother Keith, a good friend since we trained together to become EMTs a million years ago. Honestly, I don't know how I would have managed some of Chuck's care – and my own – without him.
* Another brother who wants to remain unmentioned and anonymous. Regular calls and emails, love and support, always there. Sempre ad anno, sempre a vita. Sempre.
* My mentor, a friend, collaborator, and steady, reliable ear – my 2nd mother. She has always known just the right thing to say and how to "be there," even from remote California.
* My therapist, "Other Chuck." I am not afraid to admit that I need professional mental health support in my highest calling of my life – being Chuck's "Caregiver-In-Chief" as he deals with dual carcinomas – pancreatic adenocarcinoma, and Cousin Itt on the scalp. Our sessions continue to help me remain focused and centered.
* My good friend, a senior Montgomery County motor police officer. He is compassionate, caring, and very thoughtful. He knows how to listen and be supportive. He will help me sell my Harley since my own health situation makes it difficult for me to ride much anymore.
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* Colleagues and friends who have given me recognition that blew my boots off – starting with the recognition received in Puerto Rico a year ago for my life-long support of La Isla del Encanto. My friends there are wonderful. l and I long to see them again in person.
* Being selected from among the competitive entries for the 2020 Career Excellence Award with Life Membership from the International Association of Emergency Managers. Wow, whoda thunk I’d be recognized for my contributions to the emergency management profession throughout the United States, Canada, and the world? The nomination and support letters from professional colleagues were amazing, heartfelt, and quite touching.
* My faith – spirituality, whatever you want to call it. This year, as I have been quietly and peacefully meditating daily in our back yard sanctuary. I have renewed my faith, and for that, I am grateful. I have support beyond and lean on it.
And now, most of all, one for whom I am enduringly grateful – my beloved Chuck. To quote from one of my favorite songs, back when we met, I was—
A man filled with doubt, down and out and so alone; A ship tossed and turned, lost and yearning for a home; A survivor, barely surviving, not really sure of his next move. All of this, I would have been if there hadn't been [you] Chuck.
“If There Hadn’t Been You”, written by Tom Curtis Shapiro / Ronald Wayne Hellard Sung by Billy Dean, 1991
One year ago, as I was facing (and fearful of?) ending my job, and contemplating what I would do in retirement, Chuck was steady, calm, and thoughtful. I would come home from work frightened and angry almost daily. He would lay with me on our bed, hold me, and listen. He is the absolute best listener in the world. He helped me relax with my bold decision and assured me that my life-long financial discipline has brought me to a comfortable place and enabled me to retire at age 62.
Chuck reminded me then, as I know now, I have many things to continue to be thankful for – no debt (not a dime!); the discipline to build savings to live on without having to touch my retirement investments for four years; Federal Government health care benefits that he extends to me as his husband; being a HUSBAND! Wow! I am still head over heels in love with my best friend; and living in a caring community of neighbors with whom I hold strong connections over a lifetime of service.
So yes, indeed, while I am tense with pandemic fatigue and quite concerned for the love of my life, I have much to be thankful for. Begins with Chuck and ends with you.
Life is short: have grace of faith and thankfulness.
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Chapter 6 Chemo Intolerance and Hospitalizations
Hospitalized (Friday, November 27, 2020)
How rapidly things can change for the worse! This morning, Chuck had a low-grade fever of 99.5° F that I was keeping an eye on. He said that he had a mild headache, which is uncharacteristic of him.
I took his temperature every two hours. I became quite concerned at 4 pm, when his temperature had increased to 100.5°F. I took his temperature several times to make sure, then called Sibley Medical Oncology to speak with a triage nurse as we had been directed to do during several conversations with his medical team. When I spoke with the nurse, she asked several questions, then relayed the information to Chuck’s oncologist. She called back again in 10 minutes to say that the oncologist recommended that Chuck take Ibuprofen and let them know if there were any more changes to his symptoms.
Between the time of the first call and the second, Chuck mentioned that his left leg was "really swollen." Wow! Where did that come from? Did he get a DVT again? I relayed the new information about the swollen leg to the nurse, who communicated with the oncologist again. The doctor himself called us right away and said in no uncertain terms that Chuck had to go to the emergency department.
We knew we'd be in for a long night, so we decided to eat something for dinner, take his oral chemo medicine as scheduled, then go.
We arrived at the emergency department at 5:45 pm. Chuck was triaged and taken inside. They inserted an IV in his arm and took blood for labs, and then he was brought back to me in the waiting room. Shortly thereafter, I was asked to leave and go sit in the car. Due to "Code Purple" Covid protocols, care partners are not allowed even to wait in the waiting room. I stewed in the Jeep for a couple hours. Thanks to my sister once again for taking my call and helping me by just listening with great empathy.
The ER doctor called me at 8:15 pm to explain that Chuck has an infection in his left leg. Considering his immuno- compromised situation due to the chemo, they were going to admit him. They are giving him a strong antibiotic via an IV. His oncologist concurred with the decision to admit him to the hospital for the utmost safety and concern for his health.
I tried calling Chuck, but he wasn't answering his cell phone. I communicated with him via the front desk, and was told that Chuck knew I knew what was going on, and that he said I should go home. I drove home safely, but it was hard for me to leave him there.
Infection of the leg? Where in the heck did that come from? While at first Chuck was reluctant to go to the ER, I have to say that I am glad we acted so quickly and didn't dawdle all weekend and have his health get worse.
Update, 11:25 pm: Chuck just called me. He is in his room. He sounded good and was more concerned about how I was feeling than about himself. Now... to try to get some sleep. Not sure how I'll do that, but I'll try. More updates when I know more.
Life is short: act quickly!
Infection (Saturday, November 28, 2020)
I was surprised by the ER doctor saying that Chuck may have a rather serious infection in his left leg. At first, we thought it might be another DVT because the leg showed the same signs and symptoms as when he had a DVT in September, after surgery. Now we have found out that he must stay another night in the hospital because, he was told, "Your labs are bad."
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Whaaaattt???
Considering he is going to be there longer than either of us expected, I gathered his laptop, cell phone charger, a book he was reading, and a few personal items, and drove to the hospital to drop these items off. I also spoke briefly on the telephone with his oncologist. The doctor explained that Chuck is having a bad reaction to Gemcitabine with which he was infused on Wednesday.
The oncologist told me that this drug has knocked down his blood counts again. I looked at the lab results on-line and saw that Chuck's red blood cells, hemoglobin, hematocrit, lymphocytes, and eosinophils are at dangerously low levels. Thus, no surprise that an opportunistic infection broke out. The doctor and I had another brief "deep dive discussion" on molecular toxicity of Gemcitabine.
The pill form of 5FU (Capecitabine), another antineoplastic chemo drug, that Chuck started taking on Thursday is now suspended until the infection is under control, and it is quite unlikely that he will have the next infusion this coming Wednesday. The oncologist said that another "redo" of the chemotherapy may be in order. He said something about still needing antineoplastic drugs but not finding alternatives to try for Chuck that show results for treatment of pancreatic adenocarcinoma.
Chuck is being given some strong antibiotics via an IV that can only be given in a hospital setting. He is sounding normal – frustrated, grumpy – but that's understandable. He did not sleep much last night and probably won't, as long as he remains in the hospital. Thankfully, he is calling me frequently and now is on email, so we will keep in close contact.
Chuck got another Covid-19 test, and it was negative. Our safe-at-home protocols continue to work.
Life is short: whoever said that "patience is a virtue?"
Distracted Klutz (Sunday, November 29, 2020)
My close friends and family know that I have always been, let's say, rather awkward. In other words, a klutz. I trip over my own shadow, other objects, and have no grace whatsoever.
My sisters will attest. They tried to teach me how to dance when I was a teen. They went "cha-cha-cha" and I went "bing- bang-bong-splat" each and every time. That’s why, even today, I don't dance. I commend them for their patience, but even as patient as they were, they recognized a "lost cause" when they saw it and removed their toes from being anywhere near me and the danger of me stomping on them. Now, as I sit at home waiting for Chuck's next call while he is in the hospital, I do things that are, well, klutzy.
It began on Friday afternoon, when I was loading Chuck's wheelchair into the Jeep. I was so concerned about having to take him to the emergency room that when I lifted the wheelchair from its storage place in the garage, I gouged my head on a shelf. That caused a rather large scrape that, as a scalp wound, bled profusely. I cleaned myself up and applied a bandage, but it was a mess, and it still hurts.
Then yesterday, when I went to fetch the trash cans from the street, I stepped into the garage as usual, down the ramp I built to the concrete floor, and whammo! I fell hard on my backside as I stepped off the ramp sideways. I scraped my left arm with another bleeding wound, and I have a bruise on my left hip. What's worse, I fell on my left wrist, and it is really sore. I didn't break anything (no swelling), But I badly bruised the bones in my wrist.
Usually, I control my klutziness by being more deliberate and careful when I walk, and especially when I use steps. I always (well, usually) hold handrails and take small, deliberate steps – like Tim Conway used to as the Old Man on the Carol Burnett Show. That is also why I usually wear solid tread Vibram-soled boots. They are like snow tires on my feet, even on dry summer days. I need all the traction I can get, for my own protection.
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But when I am distracted with concern and worry about Chuck, my own personal safety takes a back seat, and my old body pays the consequences. I am okay – just a little banged up, sore, and unhappy with myself. Chuck must come home soon or something else could happen. I can't let that occur. I need to be in the best shape I can be in, so I can care for my beloved husband when he comes home, whenever that may be.
Life is short: think and walk with deliberate safe steps. (So he says.)
Discharge (Sunday evening, November 29, 2020)
The lab culture of the suspected infection came back this morning, and it was not as bad as the ER doctor feared. Chuck had a cellulitis infection, but only of the skin, not internally. They washed, bathed, and sanitized his legs like there was no tomorrow.
Chuck still has a clot in his left leg that apparently has gotten worse, as an ultrasound indicated. Chuck's oncologist was puzzled but thinks that perhaps the chemo infusion of Gemcitabine caused the clot. Chuck has been on an oral blood thinner since the DVT was found in September, and that worked. The leg swelling reduced soon after getting on the blood thinner. Chuck has remained on that drug continually since then. His oncologist recommended it because chemo drugs can cause clots. Yep... so noted.
But the low blood counts for red cells and hemoglobin concerned his hospital physician (called a "hospitalist"). She ordered one unit of blood for a transfusion to get his blood counts up. Chuck called to tell me that the transfusion was completed at 3:50 pm. We need to wait for the CBC results to come back. The doctor agreed with me (and Chuck) to have him discharged if the counts are better. She will prescribe an oral antibiotic. We had quite the discussion on selecting the right medicine, considering his history as well as his limited capability to swallow large, dry pills.
The hospitalist suggested that he could stay another night, but both of us (Chuck and me) want him to come home. I want him to be able to eat a good meal prepared by my own hands, and sleep in his own bed. I want to be able to love him and care for him as only his husband can.
We will contact the oncologist on Monday to determine next steps for chemotherapy.
Life is short: anticipating welcoming my love – HOME!
Patience for my Patient (Monday, November 30, 2020)
I brought Chuck home from the hospital after he was discharged on Sunday evening. We arrived home about 7 pm, then had a bite to eat. Chuck was ravenous; he said the hospital food was awful. I imagine it was.
He said that he wasn't ready to go to bed, and wanted to watch some TV, so we went to our basement and put on a Hallmark Christmas movie. I cuddled up next to him – so happy to have my husband home. Soon enough, he was asleep in my arms. I held him closely; just us.
I was so comfortable and calm, I fell asleep too. We both woke up about 10:30 and had to unwrap ourselves from each other's arms and legs (it was quite heartwarming how my funny Valentine held me so closely). We turned off the TV and went upstairs to our bedrooms.
I helped him change for bed. When he stood and turned to pull a shirt over his head, I was shocked at how thin he is and how gaunt he looks. His skin just dangles across his shoulders – in wrinkles like you see skin dangling from an elephant's side. He used to have healthy, well-developed pecs – but not after losing 45 pounds since June.
He and I both went to bed, and he slept a good eight hours. Today, Monday, he has been eating well. He is tired, and as the day has gone on, has become a bit grumpy, but that's understandable. He has been through an ordeal.
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I spent most of the day phone-chasing his oncology team, who communicate tersely and with no explanation about anything. Just "Do this, do that," rather dismissively.
And Chuck says, "Oh well, it's our luck." Luck, shmuck. It's just how they are: really good with the science and advanced setting/equipment, but the personal touch of support just isn't there. I often feel like I am communicating with a bag of rocks. Oh well, this "Rock"-y knows how to be persistent in caring for his beloved husband.
Wednesday begins with another lab draw, then an in-person visit with the uncommunicative rock, followed by (maybe) another chemo infusion.
Life is short: be a rock of support – not a rock of non-communication.
When He Cries (Tuesday, December 1, 2020)
Chuck bathed today in advance of a "three-fer" tomorrow when we go back to Sibley Hospital's Kimmel Cancer Center. He will be there for a blood draw, a follow-up visit with his oncologist, and if so directed, another chemo infusion.
While Chuck was in the bathroom, I was with him mostly as a lifeguard. He is weak, and at risk for falling. I hand him things he needs and help him as he wants. He can bathe himself, but I want to be there to ensure his safety.
While watching him in the bathroom, I composed the following non-poem poem. It's sad, but how I feel. Let me give some context: Chuck was a strong, fit, healthy 180-pound man with a BMI of 25.8 just 6 months ago. Today, he weighs 132 pounds with a BMI of 18.
I am using this journal to vent some feelings today. Bear with me.
When he Cries, When he cries, My heart breaks. I give him space if that's what he needs at the time. When he cries When he cries, I feel inadequate. He is telling me that he hates how he feels and looks. When he cries, When he cries, He has seen himself in the mirror and recoils as if he has I shut up and listen. seen a ghost. When he cries, When he cries, I remain calm and quiet. I cover, hide, or remove mirrors in the bathroom. When he cries, When he cries, I do not deny he has a reason and right to cry. I cry, too, because I can't fix him. When he cries, When he cries, I reach for his hands and pull him close into an embrace. I don't have the words or activities to distract him. When he cries, When he cries, My shoulders bear his burden. He knows his time with me will be far shorter than we When he cries, ever thought. I hold him, love him, and try to soothe our souls through When he cries, touch and quiet embrace. We both become angry and lose faith.
Life is short: it's okay to cry. Hold the one you love close. (He's all I got...)
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Hate Arguing (Wednesday, December 2, 2020)
I really hate arguing with Chuck's doctor, but that's what this situation has come to.
Chuck was awakened last night with stinging sensations in his hands, arms, feet, legs, and teeth – the peripheral neuropathy (PN) again. It is specifically because of this problem that the first "chemo cocktail" had to be abandoned – because one of the drugs in that cocktail caused such severe PN that Chuck was writhing in pain for two days/nights.
Now I'm arguing with his oncologist, who defended the hospitalist's choice of Moxifloxacin as an antibiotic for Chuck to use after being discharged from the hospital. The drug label has clear warnings that this drug can make PN pain, tingling, and sleeplessness occur. I brought that to the attention of the oncologist, who said,
As for the moxifloxacin - I have not known this to be related to peripheral neuropathy in any way. While it may be "listed" as a side effect, it is very very uncommon. I spoke to the hospitalist about the plan, and I do agree with continuing the moxifloxacin through its course.
I hate being dismissed like that. The oncologist doesn't like having his decisions questioned, even based on medical history that I have in a long, long written record. I am prepared to restate our case again today when we see the oncologist in person for a follow-up visit. I will try hard not to express myself with anger, but indeed I feel that way. I hate arguing, but I also really don't like "holier-and-more-knowledgeable-than-thou" doctors who do not treat patients and their caregivers with much respect (or as partners in caregiving.)
Life is short: Pappa Bear is protecting his charge again! Arrrrrrr!
Apologies (Wednesday evening, December 2, 2020)
Today, Chuck had a lab, then we both had a meeting with his oncologist at the Kimmel Cancer Center in Sibley Hospital. The oncologist started off with an apology when he saw us.
He said, "Sorry, I should have been more mindful of Chuck's lingering problem with peripheral neuropathy caused by his history of Lyme Disease. Sure, stop using the antibiotic that caused the problem to happen again."
Then he presented a review of today's lab results, and we had a detailed and collaborative discussion on adjustments to his chemotherapy regimen.
We learned that the chemo regimen he is on causes a low-grade fever. While Chuck did have a mild skin rash and swelling of his left leg, it wasn't bad enough to be admitted to the hospital for two days. That shouldn't have happened. Further, he really didn't need an antibiotic, because the culture came back negative on Sunday – the day he was discharged from the hospital with a prescription for the offending antibiotic that I questioned.
The oncologist turned to Chuck and apologized (sincerely) for what happened. He thanked me for continuing to educate him and his staff.
Yay! Praise the Lord and pass the ammunition.
Chuck got an "adjusted" infusion today of Gemcitabine and will restart the oral chemo med (Capecitabine) at home tonight. He is doing okay but is tired and a bit nauseated.
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I was able to be with him everywhere, all day long, despite "Code Purple" Covid restrictions that banned visitors from even entering the hospital and treatment center. Glad I worked out getting the exception to the "no care partner/visitor" policy last week. Chuck really needed me today.
Life is short: persistence in advocacy pays off.
Bah Humbug (Friday, December 4, 2020)
Chuck is on his fatalism tear again. Yesterday when I returned from the grocery store, I saw that Chuck had filled five trash bags with more of his clothing, including suits. He had loaded them into my truck and said, “I don't want you to cry when I'm gone in a few months and you have to get rid of all these old clothes, including my "funeral suit." I'm not going to any funerals anymore. As you know, I don't want a funeral, or my body embalmed and placed in a coffin in a suit that is way too big for me.” He was grumpy and irritable all day (probably due to poor sleep the night before), which makes it so much harder to care for him. Nothing I can say or do eases his mental anguish, especially when the chemo makes him feel crappy. He went on, “No need to keep this stuff – take it to Goodwill tomorrow. While you're there, drop off the other stuff in your truck, including that Christmas wreath we brought home from my Mom's, and the other old family decorations that my sister didn't want and we won't ever use.”
Boom... again... "bah humbug" fatalism.
He would not show me what he put in those bags to donate to Goodwill. Again, early this morning before he woke, I had to quietly crawl through the house to the garage and go through those bags. This time, he was right – nothing in there that I would want – especially suits and old dress shoes that Chuck can't wear, and would not fit me. I guess I should be grateful that he is relieving me of a very sad chore that will come sooner than either of us wanted.
We just want to skip Christmas this year, as we have nothing to celebrate. We put up a few decorations from my old family collection, but that's about it. However, today I have another day to hold him, love him, and cherish him. I'll never forget that, even if he is grumpy. He has a reason and right to feel that way. But he is the man I love, married, and have vowed to honor and cherish always. Always. Sempre.
Life is short: no "ho ho ho" this year.
Chilled (Saturday, December 5, 2020)
Now that the weather outside is more or less officially winterlike, and since the chemo regimen that Chuck is on has a side effect of causing a low-grade fever, here in our house, my Human Iceberg is wrapped up in so many layers of clothes, he finds it difficult to move around. Seriously, I must help him get up out of chairs because the weight of the clothes is difficult for his weakened leg muscles to overcome.
Chuck has been "cold-ish" since the cancer and surgery caused him to lose 48 pounds. He has no fat, and much less muscle, to keep his body insulated. So he sets the heat on the main level of our house at 78° F. With the humidifier adding moisture on top of that, it's sort of a sweatbox in our living and family rooms. But Iceberg says he is still cold.
He runs a low-grade fever, around 100° F, due to Gemcitabine side effects. This side effect sets in 48 hours after chemo infusion on Wednesdays and is supposed to last two days. The fever set in yesterday, and hopefully will break by tonight. Chuck's oncologist suggested that Chuck take 600 mg of ibuprofen to keep the fever down, and to avoid another incident like occurred last week when I had to take him to the ER and he was admitted to the hospital for a suspected, but not actual, infection.
I find it more comfortable to dress in shorts, socks, and light t-shirts while my Iceberg asks for another blanket to pile on to his short-sleeve t-shirt, long-sleeve T, sweatshirt, and hoodie, plus a pair of long johns and two pairs of sweatpants. Life is short: this side effect of chemo wasn't explained during "chemo class."
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Fever Broke (Sunday, December 6, 2020)
Chuck's low-grade fever increased to 101°F late last night. However, we were not going to the ER again! I gave him both ibuprofen and acetaminophen (over several hours), as directed by his doctor. I checked his temperature at midnight, 2 am, and 3 am... and it was decreasing slowly to the mid-100 range.
When Chuck woke this morning, he told me that he woke up some time during the night to find his clothes were wet, and he changed them in the dark. While his shirt was on backwards, he was no longer in sweaty, wet nightclothes. The fever had broken. It has been normal today every time I check it.
He is very tired and weak, so we're going to watch movies today, and bathe another day. My back also needs a rest. Chuck almost fell yesterday, and I caught him. In doing so, I "twinged" my back in the same area where I injured it a long time ago. Today, we both will rest!
BREAKING 6 PM NEWS: The fever has returned, along with shivering. 100.7° F, 100.8°, 100.6°... I will continue to monitor it. He can no longer use ibuprofen, because it caused significant bleeding of the Cousin Itt wound on his scalp, for which I change the bandage twice daily. Acetaminophen only.
His oncologist won't want to hear from me tomorrow... alas, something other than an infection is going on. Uggghhh... always on weekends, something like this happens.
Life is short: cuddle with your honey and rest for tomorrow.
Next... (Tuesday, December 8, 2020)
As we enter Chuck’s third week of his first chemo cycle, we have encountered a few bumps in the road, but nothing so challenging that with persistence, it cannot be overcome.
Here’s a summary with next steps:
Context: Chuck had his first chemo infusion with a multi-drug cocktail that included sending him home with a pump to infuse one drug for 46 hours. He was supposed to get an infusion every two weeks for 3 times, then have two weeks off, then continue this routine through May.
That chemo approach did not work for Chuck. The sleeplessness, extreme peripheral neuropathy pain, and extremely low blood counts were the three worst side effects. They were so bad that the oncologist revised the chemo approach with a different mixture and schedule, to reduce those intolerable side effects.
Chuck’s current chemo routine is infusion with one drug — Gemcitabine — which only takes one hour in the chemo infusion center at Sibley Hospital each Wednesday for three Wednesdays in a row, after which he has one week off. Chuck got his first infusion of this drug on November 25, and another on December 2. The next one in this cycle is tomorrow.
Simultaneously, Chuck is taking oral chemo — Capecitabine — at home. He takes three 500 mg pills each morning on a full stomach, and another three pills after the evening meal. This continues for 21 days in a row, and stops at Day 21, which is one week following the last Gemcitabine infusion (December 16). Then he also gets a week off of this drug. The treatment will restart again with Cycle 2 on December 23, when he gets another Gemcitabine infusion in the chemo infusion center at Sibley.
We had one major hiccup in this routine when Chuck spiked a fever in conjunction with swelling and redness of his left leg. I had to take him to the Sibley ER on November 27. He was evaluated and admitted, and a suspected infection was treated for a long weekend — needlessly. The doctor even admitted as such. There was no infection; only recurrence of a DVT and associated swelling due to poor venous return from the lower leg.
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We also have had ongoing issues with Chuck running a low-grade fever, which is an acknowledged side effect of Gemcitabine (the drug infused on Wednesdays). Chuck’s threshold to report a fever now is 101° F instead of 100.4° F, as he has had fevers for days in the range of 100.5° – 100.8°, and they are manageable with ibuprofen or acetaminophen.
Chuck prefers ibuprofen because acetaminophen causes severe tinnitus, and he can’t hear very well already. However, when ibuprofen is combined with the oral blood thinner for the DVT in his leg, the open wound from Cousin Itt on Chuck’s scalp starts to bleed. I decided on Monday to ask Chuck to endure the tinnitus as an offset to slowing the bleeding from the scalp wound (Chuck’s oncologist concurred with this decision today).
I tell ya — I have to change that bandage on his head twice daily — and when it bleeds, I must “glove/gown/eye-shield”-up for his safety. Doing that is not only uncomfortable for me but is scary as the dickens for my love. When the wound is not bleeding, I only have to use gloves, so it is less frightening and frankly, easier to deal with. Thank goodness, I have plenty of personal protective equipment.
In addition to all this, Chuck must get a blood draw the day before each infusion, which requires a roundtrip drive to Sibley so they can draw blood painlessly and quickly via his chemo port. They need to review the results of his labs to make sure he meets the minimum threshold to qualify for receiving chemo.
Concurrently, Chuck is taking ten (10) maintenance drugs or supplements, five of which are individual vitamins and minerals, since he is not allowed to take a multivitamin while on chemo (folic acid is in all multivitamins, and makes Gemcitabine “more efficient,” which would cause even more pronounced side effects). Chuck’s oncologist substituted prescription strength Vitamin D3, Vitamin C, Iron, Potassium, and Magnesium. Chuck also is on a blood thinner, blood pressure medicine, a medicine for an enlarged prostate, pancreas enzymes, and fiber (to regulate the bowel). Whew! But no worries — I have quite the written schedule and method of organizing when he takes what.
We also had a minor Covid conundrum come up today, when I mentioned that Chuck had chills on top of fever. That set off alarm bells for Covid. There was some discussion of requiring another Covid-19 test before Chuck could return for treatment at Sibley. Fortunately, that was called off when I successfully convinced them that there is no way that Chuck had Covid. While two symptoms (chills and fever) are related, there were no other symptoms, and the chills were few and far between and only happened when Chuck’s fever reached >100.5° F.
A major reason for this journal is for me to document everything along the way and have it available as a quick reference. With all this stuff going on, I forget more easily than ever.
Life is short: Oh look! Squirrel!
Hospitalized Again (Friday, December 11, 2020)
Sigh.... While the administration of saline and D5W went well at home on Friday, Chuck spiked more than a low-grade fever. His temperature continued to climb incrementally all day, despite taking acetaminophen every 4 hours as prescribed by his oncologist.
When he began shivering uncontrollably at about 3 pm, I became extremely worried. Since the infusion of fluids was complete, I gowned/gloved up, carefully flushed the line with saline, and locked it with heparin. I removed the Huber needle from his port and discarded the supplies in a biohazard bag. I cleaned and sterilized Chuck's skin over his port and applied a small bandage. No bleeding... all secure.
I took his temperature every hour. At 3 pm when I undid his IV, his temp was 101.7° F. I wanted to call his doctor's office, but Chuck refused. He asked, "What are they going to do? Send me to the ER again and do nothing?"
He had a point.
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With no other signs of infection such as a cough, trouble breathing, redness (anywhere), swelling, pain (anywhere)... I was baffled. In fact, the infusion of hydrating neutral saline should bring down a fever – not cause it to go higher.
At 4 pm, his temperature was 102° F, then at 4:30 pm, it was 102.5° F. Although he stopped shivering, he was looking worse. At 5:30 pm, when his temperature hit 104.2° F (taken again it was 103.7° F, twice), I said, "This is it... that high a temperature can cause convulsions." I called the hospital and they connected me with the on-call Medical Oncology nurse practitioner directly to her car as she was driving home. What else would she say but, "Bring him to the ER, NOW."
As I was getting him ready and helping him to get dressed in street clothes, Chuck vomited. Oh great... sigh.
I think that was nerves. He had not eaten very much, but with vomiting – even a little bit – a visit to the hospital for a work- up is required.
Because Chuck was nauseated, I didn't give him any of his evening meds, including the oral chemo that must be taken on a full stomach.
We got to the ER at 7 pm. They took him away immediately, and due to the "Covid-19 no-visitor policy," I was made to go sit in my Jeep out in the parking lot. A doctor called me at 9:30 pm with an update. "We're still checking for an infection and running tests. His blood labs actually look okay, but we're doing a chest x-ray and some other tests. I'll get back to you in about an hour, when we know more."
At 11 pm, a nurse called me to say that Chuck was being admitted "for a day or two." She said that she would return his wheelchair to me and take a bag we packed just in case Chuck was admitted. So he has his computer, cell phone charger, and changes of clothes. We were ready this time.
I drove home, slowly and carefully. It's now midnight. I haven't heard from him. I am going to try to get some sleep. More updates will follow when I know more.
The hospital gave Chuck a rapid Covid-19 test. I can see the results on Chuck's electronic medical record. Negative. Not Covid. I really am suspecting an exceptionally bad reaction to Gemcitabine, the chemo drug with which he was infused on Wednesday.
Life is short: how quickly things can change.
Hospital Update (Saturday, December 12, 2020)
As Saturday progresses with my beloved husband in the hospital, information is getting to me incrementally. I have spoken with Chuck several times by phone, and at 10:20 am, I received a call from the hospitalist (doctor) assigned to him.
6:30 am: Chuck was grouchy from not sleeping! He was taken to a private room at 2 am, but did not sleep. He was wired up to a heart monitor. He is not sure why. "Somebody mumbled something about arrhythmia," but like last time, "it is going to kill me first." Sheesh.
7:30 am: Chuck called with a general discussion of how he feels. No fever anymore. BP is somewhat high, but he had not been given his regular BP med yet.
8:45 am: Chuck called again. He said that he ordered breakfast "slop." Oh well, at least he may eat.
10:20 am: The Hospitalist called me directly. We had a good conversation. I shared Chuck’s history of the current situation of fever and the past situation of when he was in the hospital two weeks ago. I was able to clearly describe the connection between Gemcitabine and the fever reaction, with which she was unfamiliar. She also was going down a rabbit hole of concern about the supposed cellulitis on his left leg. I informed her of the Johns Hopkins-provided information sheet on
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Gemcitabine that describes a common side effect of red, dry skin on the extremities that mimics cellulitis. She was also unaware of that. She will consult with Chuck's oncologist to confirm what I told her, but I know I was reading official hospital-provided information, so I am confident that the information I shared will be corroborated by the oncologist.
We also discussed Chuck's history of antibiotics, including which ones work and which ones cause side effects like peripheral neuropathy. This time, she really listened. She thanked me for my detailed history and higher-level discussion on choices of antibiotics, with links to a history of Lyme Disease and current chemotherapy. Again, she was unaware of those links, and appreciated the medical toxicology discussion. However, she will keep Chuck in the hospital at least one more night, until she gets the cultures back from lab tests, to ensure there really is not an infection that caused the fever.
10:30 am: Chuck called me to ask, "What was that all about?" I gave him the gist of it. I also shared more lab test results that are now visible to me on his e-chart. Mild chemo-caused lowering of a few blood counts, but nothing critical that could require a transfusion. Chuck was relieved.
3:20 pm: Chuck called to say, "I'm now getting my second antibiotic. Vancomycin by IV through my port." Good choice of a broad-spectrum antibiotic, and most excellent that they're using his chemo port and not sticking him with needles everywhere like they did last time he was hospitalized. Chuck will call later.
Life is short: keep the vigilance!
Incomplete Information (Sunday, December 13, 2020)
Chuck sent me an email at 3 am to say, "They're giving me another antibiotic by IV. No sleep again tonight."
I also had a restless night. I miss my love so much and want to "spring him from prison" and care for him tenderly here at home. Cook for him, talk with him, hold him.
I titled this entry "incomplete information" because what kept me awake last night is that Chuck doesn't know (or does not remember) what is being done to him, and why he is connected to a heart monitor, and why "some little creepy guy" comes into his room, mumbles, checks the leads for the heart monitoring device he is connected to, then leaves. What is the concern about "heart racing?" No one explains. The "little creepy guy" just mumbles that.
Chuck refused a diuretic because past experience with diuretics used to control hypertension made him have to empty his bladder frequently, and he did not want to have to pee so frequently. Is that why this morning they gave him metoprolol by IV, and also orally? Metoprolol is the maintenance drug that Chuck has been on for years to control hypertension. It works well for him and does not provoke frequent urination.
Why does Chuck continue to get more antibiotics by IV? What are they seeing in test results? Chuck doesn't know why he is not getting some of his prescribed medicines. Neither does he know why he is being "shot up" with a powerful blood thinner, directly into his abdomen. Ouch! That's gotta hurt!
I had a long conversation with him this morning for an hour between 6 and 7 am. We developed a list of questions for the hospital doctor.
The main things we intend to ask about are, "What is the medical necessity for Chuck to have to remain hospitalized? Is there a life-threatening condition that can only be treated in a hospital setting? If so, what is it? What treatment is being applied, and why?"
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RESULTS OF A 30-MINUTE DISCUSSION WITH THE HOSPITAL DOCTOR
No infection! The culture was negative. The doctor confirmed that the high fever was a reaction to the infusion of the chemo drug Gemcitabine last Wednesday.
Chuck was informed, but couldn't remember (or didn't hear), that a new blood clot was identified in his right leg. It is possible that this new blood clot may have broken off and caused a pulmonary embolism, which might explain the elevated heart rate. However, he has no other signs of a pulmonary embolism, so they're not sure if that has happened. He is being injected in the abdomen with a new, more powerful blood thinner, because the oral blood thinner that he was prescribed for a DVT in his left leg since September must be insufficient now since more clots happened while he was on it.
Chuck was given a CAT scan of his lungs today to look for a clot. When the radiologist provides a reading of the CAT scan, his doctor will inform us of the results. Also, a cardiologist has seen Chuck today and confirmed the switch to an injectable blood thinner is appropriate.
UPDATE: I spoke with the doctor – No clots in the lungs! He will be monitored today to observe any reaction to the new blood thinner. If there no issue with that, he will be discharged tomorrow. Crossed fingers! It is likely Chuck will need to have the more powerful blood thinner which can only be given by injection during the entire time he is on chemotherapy (through May). But because I am qualified, I will give the injection to him at home as prescribed twice daily. Oh joy, more needles. But I know I am fortunate to be able to apply my medic skills for my love.
Yeah, while not what we wanted, it is a medical necessity that Chuck remain in the hospital, at least one more night.
Life is short: if it’s not one thing, it's another! Sheesh!
Coming Home (Monday, December 14, 2020)
Finally, I received the call from Chuck that I wanted to hear: "The doctor came in and said that she would begin the paperwork to have me discharged." Yay!
Now, what's next? Besides waiting for the official release notice, Chuck will have two new medicines prescribed. One will be for the heart racing, prescribed by a cardiologist, and the other for the stronger blood thinner given by injection. Apparently, this injectable blood thinner is rather common, and will be available at our local pharmacy, much like insulin is.
We will need to make an appointment for a follow-up with the cardiologist soon.
I will also contact Sibley’s Medical Oncology Pharmacy for a consult on organizing his new med schedule, dosages, and timing. I have learned it's all about the timing to keep certain medicines apart, so they don't conflict with chemo and cause other problems.
We also have a scheduled appointment with the oncologist on Friday. Many, many questions are on my list, the first being, “What can be done to avoid more trips to the ER with a fever, and how can we avoid having other medical problems like heart racing and more blood clots?”
Actually, in retrospect, it was a good thing he was medically evaluated again. The oncologist does not deal with heart and blood clot issues.
This journal entry is short (for now) because I am waiting for more information. I can't wait to go fetch my love and bring him HOME! To snuggle, cuddle, cook for, and love.
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THNGVBD (Wednesday, December 16, 2020)
Back in my youth, I had a placement as a teacher's aide during my last two periods during my senior year in high school. I was assigned to help at the kindergarten at my alma mater elementary school. Often I would read aloud to the students. One book I remember well is Alexander's Terrible, Horrible, No Good, Very Bad Day. That title, abbreviated as THNGVBD, is the apt heading of this entry. Not for some imaginary "Alexander," but rather for my beloved husband and me, caught in the crossfire.
To recap, Chuck had a severe negative reaction to the first chemotherapy regimen chosen by his oncologist (four drugs infused over 46 hours). After Chuck suffered extreme pain and three nights of no sleep, the oncologist stopped it. A new regimen was substituted (Gemcitabine once a week, and Capecitabine given orally for 21 days), beginning on November 25. Chuck’s negative reaction to Gemcitabine brought on a spiked 101°F fever, a trip to the ER, and admission for the weekend after Thanksgiving (November 27 to 29). The doctors were chasing ghosts, looking for an infection that was never there. The signs that seemed to point to infection actually were only reactions to Gemcitabine.
Two weeks later, same thing. This time, the Gemcitabine reaction was exceptionally severe, spiking a fever of 103.7° F. Another trip to the ER on December 11, followed by hospital admission, chasing more "infection ghosts," but finding maybe more blood clots, which caused them to chase a non-existent pulmonary embolism due to a little bit of tachycardia (racing heart). Chuck was finally discharged on Monday, December 14.
I now must give Chuck two more drugs for the blood clots and tachycardia, including a blood thinner that I have to administer by subcutaneous injection twice a day. Me – a shot giver. Wasn’t it just a few weeks ago that I requested an ADA accommodation for a friend to accompany me when I had to get an injection due to my own extreme fear of needles? Amazing what you can overcome when you have to.
Yesterday, Chuck started complaining about sores in his mouth. They got worse throughout the day, including appearing as blisters on his lips. He was in so much agony, he could not eat anything. That made him "hangry" as well as super-duper- grumpy, irritable, and emotionally eruptive. It definitely was his Terrible, Horrible, No Good, Very Bad Day.
Being the only human within shooting distance, I also had a Terrible, Horrible, No Good, Very Bad Day. Yeah, unfortunately, Chuck's temper tantrums caused me to have a mild Crohn's attack. I had to remain within running distance of the toilet for several hours.
Between bathroom visits, I spoke with a Medical Oncology nurse about Chuck's situation who confirmed that the mouth sores are a known side effect of Capecitabine, the oral chemo drug. Chuck was told to stop taking it on admission to the hospital, which he did. He hasn't had it since the morning of December 11. However, the mouth sores are a delayed effect, the severest form of which is seen in about 10% of the patients. Chuck is in the unfortunate 10% of the worst of the worst.
I learned that Capecitabine is causing the death of certain cells in Chuck's mouth. As those cells die, the body forms blisters around them. Those painful blisters are treatable only with topical numbing applications like benzocaine and a prescription mouthwash called "Magic Mouthwash." Unfortunately, Chuck must wait it out until these blisters go away, which may take several more days. Meanwhile, he can't eat without suffering a lot of pain in his mouth. He can drink liquids, but even that hurts. Yesterday, he was on an "all-Ensure" diet.
Running low on Ensure on the day before a snowstorm is in the forecast, as well as during a pandemic, isn't good. After abandoning my attempt to go into the grocery store closest to us due to a very long line outside the store, I drove to another grocery store down the road. I was able to get in, get the Ensure and some straws (because Chuck can't have anything touch his painful lips), pay at the self-checkout, and get out. But man, was it crowded, as Maryland grocery stores always are when a snowstorm is so much as whispered about.
Let's see what today brings. I sure hope not a sequel to Chuck's Terrible, Horrible, No Good, Very Bad Day.
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I also am making a statement of observation: this chemotherapy regimen is intolerable. Chuck will not go through this agony again. Two regimens have failed in the sense that Chuck can't tolerate the severe side effects of the drugs. Are there other, less intense chemotherapy regimens?
We have a scheduled appointment with the oncologist on Friday. I sure hope Chuck will go. He was yelling yesterday that he would not. We'll see. I have learned to ignore the screaming when he is upset. He can be convinced otherwise, eventually. Unfortunately, this oncologist will not have video visits. He wants eyes on the patient, which I think is appropriate even if Chuck doesn't.
Life is short: have patience; have patience. Love your love like you haven't loved before. It's not his fault. He is not to blame.
Mucositis (Thursday, December 17, 2020)
This week's challenge is Chuck's experience with severely painful sores in his mouth and on his lower lip. The medical term for these sores is "mucositis." Mucositis occurs when cancer treatments break down the rapidly divided epithelial cells such as are found on the lining of the mouth, leaving the mucosal tissue open to ulceration and infection.
These sores are a known and warned-about side effect of the oral chemo drug Capecitabine. The sores began on Monday evening. Throughout the day on Tuesday, they became more numerous, larger, and more painful, so much so that Chuck could not endure the pain when he put food or liquids in his mouth. He still can’t eat today.
This time, it is not that he does not want to eat or has lost his appetite. Far from it. He is so hungry, he is "hangry." He has had frequent outbursts of temper, yelling, "They don't care about me! YOU aren't listening to me!" It's no fun being the target of temper tantrums, but I am the only person available, so it happens. I just let it roll off my shoulders, tell him I love him, and roll on. It's not his fault; this situation is impossible for him, and I recognize that. His angry outbursts will only make me love him harder, not back away. I truly believe in and live our marriage vows.
While his temper tantrums have subsided somewhat as the day has gone on, his inability to eat persists. It is horrible. He has lost another eight pounds, down to 130. He is a ghost of the man I once knew. Anything hot, warm, cold, or cool, or requiring chewing, just hurts like hell, and he can't eat. He can barely swallow water, though he is keeping hydrated (and taking his other medicines) because he knows the threat of hooking up another IV of fluids remains part of my back-up plan. He really doesn't want any more IVs, even if I can do it less painfully through his chemo port that goes directly into a central line. The anti-IV feeling is, I think, PTSD from recent hospitalization.
I learned that:
More than one-third of people undergoing cancer treatments discontinue the treatment responsible for mucositis due to the severity of their symptoms. Doctors may prescribe magic mouthwash and other solutions to try to help people continue to tolerate their treatments. (citation: Oncology Nursing Society website: https://www.ons.org/pep/mucositis)
Chuck is not talking about discontinuing chemotherapy (at least directly), but he cannot continue to suffer such severe mucositis, not to mention other such debilitating side effects that frequent ER visits (and subsequent hospitalizations) are necessary. We are placing all hope on a planned upcoming visit tomorrow with his oncologist to sort this out.
Meanwhile, the oncologist's nurse practitioner prescribed "Magic Mouthwash," which is a compounded combination of benzocaine, lidocaine, and diphenhydramine. However, for the first time, the insurance plan won't cover the prescription. I spent hours yesterday trying to obtain approval of an override of the insurance company's refusal to cover it, but failed. The oncologist even tried to intervene on our behalf (at my request), by sending a pre-authorization request establishing medical necessity, but the insurance company wouldn't budge.
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Meanwhile, I have learned the components and mixture of "Magic Mouthwash." I asked the nurse practitioner during a phone call last night to prescribe oral lidocaine. The insurance plan covers that. I will mix the other components of "Magic Mouthwash" in myself, using over-the-counter oral benzocaine (Orajel mouthwash) and liquid Benadryl (diphenhydramine).
Who said that I don't remember basic chemistry? Mom always worried about me "playing" with my chemistry set in the basement... tee hee. To me, cooking is essentially chemistry, with so-much-of-this, so-much-of-that. So today's "one thing" is to craft my own "Magic Mouthwash," let Chuck swirl it in his mouth every two hours, and pray it works to resolve the pain from his mouth sores.
Wish us success.
11 am update: I picked up the oral lidocaine from the pharmacy and brought it home. Chuck did not want me to make the formula of "Magic Mouthwash." He just used the oral lidocaine and yelled at me some more. Three days of grumpiness is very trying on my nerves, and I must admit, my well-known patience is thin. But as I said when I married him, I pledged to support him in sickness and in health as long as we both shall live. Today, it's hard to live our vows, but I am. I am. I really am trying.
Life is short: do what you have to do by applying skills, knowledge, and persistence.
Expected, But Sad (Friday, December 18, 2020)
Yesterday was another tense day with Chuck. Nothing I could do or say was helping, and he emoted from time to time to express his feelings. The more childish the retorts ("That's stupid!" and "You're not listening to me!"), the more I ignored them, and the angrier he became. Finally, in the evening, Chuck began to cry. I waited out the sobbing, then moved closer to him, placed his head on my shoulder, and held him while he cried even harder. I cried, too.
After the tears abated, I gently said, "You know I love you; I always love you. I'm here."
He said, "Yeah, I know that. I am mad at myself for the way I have treated you." He went on further, "I am afraid that the oncologist will think that I am being over-dramatic and won't change the chemo. But I can't... I won't... I just can't," and then he began crying again.
Holding him, I said, "I know... I know... this situation is intolerable. Look here." I showed him a legal pad with five full pages of written notes, questions, and information from my studies. I am well-armed for our in-person visit with him today, mid- day.
He looked at me and said, "I expected nothing less. I love you."
Life is short: yes, this is what it means when I say that both of us live our vows.
SBTN (Friday evening, December 18, 2020)
SBTN means, "Slightly Better Than Nothing."
Our in-person visit with Chuck's oncologist today was not surprising, but very disappointing.
Chuck cannot tolerate either of the two chemotherapy approaches that the oncologist prescribed, though he valiantly tried. Each of those formulas have proven success in reducing the recurrence rate of Pancreatic Ductile Adenocarcinoma by as much as 80% (first try) and 72% (second try), respectively. However, Chuck's body cannot tolerate either of these chemotherapies. The first chemo approach caused significant, Oxiplatin-induced, painful neuropathy, with a sleep disorder on top of that. Chuck was in agony for a week. The second chemo approach caused high fevers and not one, but two,
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subsequent hospitalizations chasing non-existent infections. This approach also caused painful mouth sores (mucositis) that made it impossible for Chuck to eat solid foods or drink liquids. He is beginning to eat soft foods again just today.
The oncologist said, “We've reached the end of available chemotherapies that have proven results. You can't tolerate them.” Chuck shrugged. That was his only reaction.
I pursued a little further at a higher level. The oncologist appreciates this level of discussion.
There have never been studies of people who had both pancreatic cancer and a history of Lyme Disease. There may or may not be a link. I suspect there is, but without studies, we probably will never know. Chuck will not participate in any studies. There is no incentive for him to do so, and the less he must have blood taken and talk to people, the better (from his point of view).
Ultimately, the oncologist suggested that Chuck take a lower dose of the oral chemo drug, Capecitabine, 5 days on and 2 days off, for two weeks, starting Monday, December 28. We will then evaluate how well Chuck can tolerate that. We scheduled our next visit with the oncologist for January 6. This single-chemo approach has a "slightly better than nothing" recurrence rate of adenocarcinoma of 12%. Chuck will have quarterly CTs for surveillance. When the cancer recurs, he will move on to palliative care.
Chuck has already convinced himself that he will die in 2021 and has begun to rearrange items in my kitchen and pantries. That's the only thing he can control, and it drives me absolutely, positively, bat-shit nuts.
He also said, “maybe it will be better if I have a cardiac arrest and go quickly.” Oh crap, the things he hears and thinks about when hospitalized, when I am not there with him. That’s another thing that tests my patience. I think he says things like this because he wants to see how I react. Ain't gonna happen, fella. Steel resolve and patience remain what define me.
I will let him calm down, rethink, re-evaluate, and reconsider his future life with me as 2021 may make it to be. I am his husband. I will not give up. I will continue to support and love my Chuck. Always. Forever. Sempre. In sickness and in health, as long as we both shall live.
For now, I will schedule another appointment with my therapist, call my family, silently scream, meditate, evaluate, continue with my new Caregivers support group at Hope Connections (that I'm liking), and not give up. Perhaps a review and second opinion by another oncologist may happen, if only to confirm what to expect, or to find acceptable alternatives such as a clinical trial that may have some value in reducing recurrence of the cancer.
By the way, we've given up on doing anything about "Cousin Itt" (the squamous cell carcinoma with peripheral nerve involvement) on his scalp. I don't have the heart to tell him that Cousin Itt has another cousin, two inches away on another area of the scalp. We'll deal with that in 2021.
PS: regarding Christmas – I know that's a special time for many, and sharing joy and happiness is part of that. However, like Casey at the Bat, there is no joy here in Mudville. But just because I want to skip Christmas doesn't mean that you shouldn't continue to share joy, peace, and well-wishes. After all, this is the season of miracles.
Life is short: have peace and pray for a miracle.
No Break (Tuesday, December 22, 2020)
I was really hoping that since Chuck is no longer having chemo in any form, his body would recover from the toxic effects of the infusions and pills, and he would begin to feel better. Unfortunately, this isn't the case. Chuck continues to lose weight and not get nutrition because he can't keep food inside him due to ongoing diarrhea. He falls asleep during the day, more than just a nap. He looks ghostly pale, and shivers a lot, even though he is bundled up in six layers and turns the heat up so high that I have to run around in shorts and lightweight t-shirts.
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He is becoming more forgetful, too. He is now asking me the same questions multiple times, like "What was in the mail?" I learned from caring for my aunt who had Alzheimer's Disease not to say something like, "I just told you," but rather, to look at him directly, speak more loudly, and answer again as if I hadn't answered five minutes ago. In Chuck's case, he may not have heard it, or just may not remember.
Regretfully, too, all this makes him crabby. Not as bad as he was when he was released from the hospital the last time, during the week-from-hell of December 14-18, but still, "gripe gripe gripe, crab crab crab, whah whah whah." Poor fella, can't catch a break. It's not the man I love, it is his illness griping. I love him, not the illness. I will always love and care for him. Focus on loving my man, not raging at how the symptoms make him behave. My therapist, "Other Chuck," and my determination to live our marriage vows help me remain focused. Love, honor, care; love love love harder. Every hour of every day. Love.
The shivering frightens me and scares Chuck. At first, I suspected that since he has no body fat and is so thin, his body can't keep itself warm naturally, so it resorts to autonomic efforts to keep warm. However, this morning he had a fever of 101.3° F. Yikes! This cannot be a reaction to the chemo drug Gemcitabine, could it? It could be an infection of some sort. However, he has no other signs of infection anywhere. No cough, no upset stomach or vomiting, no sweating, no redness of the skin anywhere (trust me, I checked!) As my friend Keith would say, "Holy moley, Batman!"
I just gave him a dose of acetaminophen and will try to get something on his stomach. At 9 am, I will call a Sibley Hospital triage nurse for help.
11:15 am update: After speaking with a nurse practitioner who is very familiar with Chuck's situation as well as with Gemcitabine, I stand corrected. His fever spike is likely an ongoing reaction to the last Gemcitabine infusion (on December 9). Apparently, he can still have reaction incidents as much as 30 days after an infusion. Who knew?
Because Chuck needs hydration and he is in no shape (physically and mentally) to go to the hospital, I connected a saline drip through his port. He is resting comfortably in the family room, surfing his favorite tram videos on YouTube while getting an IV. When that's done, I will don full PPE, flush the line with saline, lock it with heparin, and free him from the IV. This entire process will continue for as many as five more days at home. Thank goodness, we do not have to go to the hospital, urgent care, or otherwise. Husband Medic did what needed to be done.
Temperature check at time of doing this: 98.9° F. The acetaminophen, plus, as Chuck points out, the reduction of stress by taking care of this at home, brought the fever down. I just wish we could do a "body meld" (like Spock’s mind meld on Star Trek), because my temperature today was 95.9° F. Am I alive?
8:30 pm update: Chuck continues to be lethargic and sleepy and has a low-grade fever between 99.7° F and 100.4° F. Tylenol (the real stuff that Chuck can swallow) is holding the fever down. He refused to let me take his temperature after 8 pm. He doesn't want to know. He still has an extreme fear of going to the hospital. I continue to try to reassure him that I am treating him at home and won't force him to go to the ER, but he is still afraid and emotional about that.
Chuck is not afraid of going to the hospital because of Covid, but because of how he was treated when hospitalized before. Since he cannot hear well or communicate calmly, and is grumpy, he antagonizes nurses and doctors. A hospital is not a good environment for him, especially since I cannot be with him and serve as a voice of calm reason. Damn Covid. Damn restrictions. Understandable, but horrible.
Life is short: care for your love, comfortably in a lower-stress home environment. Grateful to have the skills and licensure to be able to do that!
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My Christmas Gift – My Husband (Christmas, Friday, December 25, 2020)
Today is Christmas Day, and I have been up since 5 am. Unfortunately, my 5 am call was to care for my beloved husband. There are so many confusing things going on, it's hard to describe. Let's say that my caregiving calling is hard at work. His early crisis averted, we lay upon our bed and snuggled for a while like we used to do. He scratched my back, then he fell asleep in my arms.
That's all I wanted for Christmas – to snuggle in the warmth of his love.
As we grow older, the last thing we want is more stuff. Later in the morning, Chuck gave me some new flannel shirts that he had ordered for me, and I gave him some new sweats and a fleece to keep him warm. Practical gifts. No stuff or baubles.
We watched some Hallmark Christmas movies.
Chuck refused to eat anything for lunch. Diarrhea was continuing and getting more frequent. I put the chicken I had thawed for dinner back in the freezer.
Chuck was tired, and so was I. Waiting, wondering, pooping.
I was exhausted from the ongoing demands of caring for Chuck and his complicating symptoms of frequent diarrhea, which requires frequent cleaning, and makes him grouchy.
PM update: Chuck will not eat solid foods because he has no appetite. He drank some Ensure and had a small bowl of applesauce. I am concerned.
It's been a rather sad Christmas – but I have my love here where I can see him and am holding him close to my heart.
Life is short: be grateful for the gifts bestowed – having my husband at home for Christmas.
Decisions (Friday evening, December 25, 2020)
It's Christmas evening. Chuck and I had a long, long talk. Chuck made some decisions. I will not second-guess or contradict his wishes, which are...
1. To find out why he feels so crappy. Low-grade fever, non-stop diaper-demanding diarrhea, lethargy, grumpiness, whining, crying... all of it. Today has been horrible. The crying bothers me most (next to refusing to eat.) We have a scheduled appointment with his primary care physician on Monday afternoon. This appointment can't come quickly enough. 2. To never go to the emergency room ever again. His PTSD from the last two ER-to-hospitalizations is severe. 3. Not to take any more chemo, even though his oncologist recommended that he restart the oral Capecitabine on Monday. At least, not until his current symptoms that make him feel so sick are treated and/or resolved. This decision was facilitated by Chuck observing the skin on his left foot crumbling off which is a delayed side effect of Capecitabine. 4. To undergo tests that his PCP may order to find out what’s causing his current spate of illness, but to not undergo more surgery, even if the tests indicate a need. As of today, he will refuse. 5. Not to pursue even looking for further cancer treatments, including clinical trials, until his current crappy feeling/sickness is resolved. 6. To try to eat something, even though he does not want to because he fears vomiting or making the diarrhea worse, or both.
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7. To allow me to eat, but I must eat upstairs in my home office. The smell of cooked food (such as a chicken breast I made myself for dinner) makes Chuck nauseated. I must eat and can't live on soup or bologna sandwiches forever. All day long, I tried and tried and tried to make him happy, or at least mildly calm. He wasn't having it. But I refuse to let grouchiness make me angry with him. It is not Chuck. It is his illness with which I am frustrated. I love him. I love him. I am living our vows by the minute now.
All day long, little things resulted in many grumpy retorts. Every time he grumbled, I just looked at him and repeated, "I love you... always will... living the vows." He eventually stopped complaining.
I am glad this Friday is ending soon. Tomorrow is another day to love my husband. No joy this Christmas... not unexpectedly. (BTW, I really did try to listen while meditating today... nothing... just me and the bubbles in the mud after last night's heavy rain.)
Life is short: love persistently.
Give-Up Tug-o-War (Saturday, December 26, 2020)
Since Thursday, Chuck has been consuming less and less, and is getting weaker and weaker. He absolutely positively refuses to get medical attention to diagnose what's wrong and find out why he is feeling so bad.
The situation is miserable, both in how he feels and how he is making me feel. So far, I am handling it, eating and keeping hydrated, meditating to destress, but it's really hard to be alone, mired in such misery.
Chuck has been using Dr. Google to explore his symptoms, which include frequent diarrhea, feeling of a "lump" in his abdomen, inability to eat solid foods, spitting up or vomiting nutritious liquids like Ensure. He is lethargic and losing more weight, down four more pounds from a week ago to 128.
The only good thing is that he has not had even a low-grade fever since yesterday afternoon (and all day today).
I connected an IV of neutral saline through his chemo port to keep him hydrated and with doctor’s approval, piggybacked a dose of Vancomycin.
Usually when I give him fluids, he perks up. But not today. He is even more lethargic and growing weaker almost by the hour. By the volume he is urinating, I think it goes from the IV into his central line and out the ureter without stopping.
I have explained until I am blue in the face that I don't have a magic solution or treatment to give him from a bag of tricks that I don't have. I keep repeating – my blue face indicates – the only way to get treated for whatever-it-is that is causing such distress is to have a physician (or authorized individual, like a N.P.) order tests, which I hope would include a CT of the abdomen. Test results will guide treatment.
I have no idea what treatments may be in store, but I sure hope a medical professional can do something. Chuck's Dr. Google interpretation leads him to think that he will have to have more surgery, which he rejects. He also refuses to go to the emergency room, because he suffers from PTSD and is very frightened. “No way will I go back there!"
I can't get him medical attention sooner (at least while he is conscious). The PTSD he suffered from two recent hospitalizations continues. He really thinks that I am going to force him to go to the ER.
So here I am, suffering with his misery, and at a complete loss as to what to do.
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Our options are:
1. The diarrhea stops due to all the loperamide (Immodium) I am giving him (as prescribed), and he (slightly) begins to feel better tomorrow. Then he will just wait for the telemed visit with his PCP scheduled for Monday afternoon. Of course, he will demand instant treatment and cure. My blue face reminds him, tests will need to be ordered so the doctor will know the right course of treatment. 2. The diarrhea doesn't stop, but somehow he gets through tonight (Saturday) and tomorrow (Sunday). He will allow me to call Sibley Medical Oncology on Monday morning to ask if they will see him in their in-house urgent care. I am not sure if they will or if it will be open, but he will permit me to take him there if they do. They can run labs and tests and maybe, just maybe, help. 3. He becomes unconscious, in which case I will have to call 9-1-1 and send him to the closest hospital to us, which is not part of the Hopkins system. They would be "shooting in the dark" as to his medical history and dealing with him. If he wakes up in their ER, he will freak out. 4. He finally relents and lets me take him to the Sibley Hospital ER. As stubborn as he is, he would have to be really sick to let me do that. Generally, Chuck has given up. I have not. We are in a tug-o-war, mired in his misery. What is keeping me on an even keel is that I continue to say, "I love you, I always will, as we said in our marriage vows – you are mine to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death us do part.
Life is short: If there were any time to “live the marriage vows,” it’s now.
To the Hospital (Sunday, December 27, 2020)
With a night of little sleep, Chuck is so sick with massive diarrhea and so exceptionally weak that it was either I call 9-1-1, or he would agree to let me take him to the Sibley ER.
Chuck was still having major bursts of diarrhea that caused me to have to clean him and change his clothes three times. He was so weak, all he could do was moan and sit in a chair, unable to hold up his head.
By 9 am, I had managed to get Chuck to change clothes and eat a little bit of fruit and drink some juice. I gave him his routine morning medicines, including the blood thinner injection.
But he just sat there... so weak, sad, and vulnerable. He said that he didn't have the energy to get to the Jeep in the garage.
I suggested that I could call the fire department and request a "lift assist." However, they would come in a large truck which would attract unwanted attention from the neighbors. That motivated Chuck to find the energy to let me lift him to his feet, then plant his hands on my shoulders so he could walk behind me to the Jeep in the garage.
All done... and we were off.
I was able to go with Chuck into the Sibley Hospital emergency department triage area, where I answered all the questions for the triage nurse. Chuck was taken to a treatment room and, due to Covid no-visitor policy, once again, I had to go sit in our Jeep in the parking lot. Chuck called me often. He was in a treatment room with a window, so he had cell service.
Blood, stool sample, urine sample were taken. That took some time, because wouldn’t you know it, Chuck couldn't poop worth a shit for several hours (pardon the pun).
They also did a CT scan of his abdomen, to have a look at the area where he had been complaining about feeling a knot or lump.
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Chuck called me at 2 pm to say that he was being admitted to the hospital because they diagnosed colitis. This is an infection and inflammation of the colon. This diagnosis lines up with his symptoms of low-grade fevers, chills, gas, vomiting, and diarrhea.
I am waiting for a call when he gets to a room. I anticipate he will be given massive doses of antibiotics appropriate for that illness. Apparently, the Vancomycin that I was giving him with the IV fluids I have been administering the past five days was not strong enough or the right antibiotic for this illness and didn't work.
P.S. added later: this was the last time Chuck was in our house... I never ever realized that when I took him to the hospital, he would never return to our home.
Life is short: keep calm and press on.
Averted Catastrophe (Monday, December 28, 2020)
Chuck remains hospitalized. Lab results indicated he had an infection of Clostridioides difficile (known as C. diff). This nasty bacteria poses a significant threat to his life. It was diagnosed after the infection got out of control. It is causing kidney failure.
I have spoken with Chuck a few times on the phone, though he talks only in a whisper. I also spoke with the doctor who diagnosed his illness, who has established a treatment plan. When Chuck was in the hospital two weeks ago, he was given an antibiotic called Cephalexin to prevent his chemo-induced reduced immunity making him susceptible to infections. The dose he was given was too strong and brought on the bad case of diarrhea. The diarrhea made him so weak that I gave him fluids and an alternate, less diarrhea-inducing antibiotic, Vancomycin, by IV for five days at home.
The doctor asked why I gave him Vancomycin. I explained that his Nurse Practitioner decided to send it to me to administer at home because we did not want Chuck in the hospital again during the pandemic. She said, "If you had not done that, your husband probably would not have survived." I dropped the phone, then recovered. This news really startled me, as well as Chuck who heard it too via speakerphone in his hospital room.
That discussion blew my mind. It turns out that the C. diff infection can be treated with Vancomycin. I was giving it to him at home, but the dose I was using was not strong enough to treat an outbreak of C. diff. properly. The doctor explained that if I had not given Chuck Vancomycin last week, this strain of bacteria is so bad that it could have possibly broken the wall of the colon, and caused an internal infection and sepsis, which would have killed him.
What I was did was buy a few more days for Chuck to be at home for Christmas by fending off the infection. Recognizing that it was imperative to get him to the ER when I did saved his life. I am NOT looking for praise or kudos. Delay in getting medical attention when warranted, even during a pandemic, can be life-threatening.
At the moment, Chuck isn't dealing with being hospitalized well at all. He can't sleep, doesn't like what he is being fed, and is coughing up a lot of phlegm. Worse, he said that he passed stool 14 times between last night at 6 pm and this morning at 6 am. He has a bedside commode that he must use because he cannot get out of bed. He cannot control how often his bowels move. Bless the nursing staff who have to clean him and the mess.
Because the bacterium is so nasty, Chuck said that all staff who enter his room are in full hazmat suits. His e-chart (which I can see) is filled with dozens of test results, all confirming this reportable infection. C. difficile is really, really nasty, and it is reportable to departments of health because it is an infection that could be picked up in a hospital. Perhaps that happened when he was hospitalized two weeks ago? Who knows?
I also learned that Clostridioides difficile infections can be induced by the antibiotic Cefalexin, which was the drug with which Chuck was given on discharge from the hospital on December 14. Wowzers... I am learning that his infection was likely made worse by an antibiotic prescribed by the hospital doctor two weeks ago.
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My poor husband... so miserable. I'll never call him – even in jest – Mr. Poopy McPoopster anymore.
Life is short: As the Night Wind said to the People Everywhere – Pray for Peace.
Kidney Damage (Tuesday, December 29, 2020)
I received a call from Chuck’s Hospitalist that no one wants to get: "Your husband seems to be experiencing kidney failure. We need to arrange for you to be able to visit."
It began with Chuck calling me this morning – his only phone call. He used the phone in his hospital room because he could not find his cell phone. He did not know where he was and was very confused. “How did I end up in a hospital? Which one? What are they doing to me?” Gosh, this call frightened me immensely. (Addendum: I didn’t know at the time, this turned out to be the last conversation I ever had with my husband. I found out on December 31 that Chuck had an “incident” on the morning of the 29th where his blood pressure dropped so severely that he passed out. They revived him, but when he came to, he was delirious and could no longer communicate. And THEY DID NOT TELL ME ABOUT THIS “INCIDENT” UNTIL TWO DAYS LATER? WTF! Damned hospital doctors... they really don’t care that the husband of the patient should know what’s going on, even though I am his Healthcare Proxy under his Advance Directive. Grrrrrrrrr!)
After that panicked conversation, I scrambled to reach anyone who could help me to help him so I could ask his attending doctor to call me asap. I finally reached someone who told me the doctor would call with information. She called me an hour later while I was pulling my hair out and still calling everyone I could find a number for, including the Hospital President.
The doctor told me that his condition was much worse. He had damage to his kidneys from "nephrotoxicity," which is damage caused by the powerful antibiotics he received when hospitalized two weeks ago, as well as from chemo drugs. He is also dehydrated, and generally a "medical mess."
I was told that the doctor would call with more information, but I didn't expect THAT information – that I should come to the hospital because it seemed like his life was on the line. I sprang to get to Sibley Hospital asap.
I went in, was checked on the list, and was escorted to Chuck's floor. I was made to glove-gown-mask-shield-up and was led into his room. Chuck opened his eyes and said meekly, "You're here, you're here..." then drifted off. I caught myself from bursting into tears, found a chair, and held his hand. I know he knows it was me, because I swear that I felt him squeeze me back.
The doctor had to sedate him so they could run more tests by taking more blood, stool, and urine samples, and another ultrasound of both kidneys. I watched the screen of the ultrasound machine as the operator explained what she was seeing in real time. Most of the time, though, I just sat there holding his hand, stroking his face, and pouring more love into him than anyone else on Earth could do. I prayed, meditated, took deep breaths, and prayed some more. I also spoke to him. Even though he did not respond, I knew he could hear my voice, and that it would soothe his soul. Man, did I prattle about anything and everything.
The nephrologist (kidney specialist) came in and spoke with me briefly. "He's stable, but we need to watch him closely tonight. He is not so bad that he has to go into the ICU." His hospitalist further explained that they had to adjust his medications and antibiotics for the C. difficile infection. That is what is damaging his kidneys, though the damage started with the chemotherapy.
I stayed until I had to leave and cried myself home.
Life is short: Life is so fragile, yet love endures.
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I Am The One Who Is Fortunate (Wednesday, December 30, 2020)
While Chuck struggles for his very life in Sibley Hospital, and I am stuck at home today, again unable to visit him as the visitor’s exception was for one day only. I cannot be there to hold his hand and let him know that I am there. I read comments from my circle reading this blog and hear medical professionals say how "lucky" Chuck is to have me.
Rubbish. Poppycock. I AM THE ONE WHO IS FORTUNATE. It's not luck, like we won a prize in the lottery of life. I know those of you who are married may feel the same about your spouse. But that's just a saying, not reality.
Marriage is work. Hard work. Ups and downs, trials and travails. Joy, happiness, fights, arguments ... all of it. What makes a relationship work is that: work. It is more than love and la-la-la. Work on caring for the other half of your relationship before yourself. Listening, responding, doing things – even the little things of life's daily chores – and respect.
Being honest, faithful, and worthy of trust is paramount to a rock-solid relationship. It is my great fortune that I met someone who does all of that, and more.
Chuck is the world's best listener. He seldom talks much, especially around other people. Generally shy and reserved, he keeps to himself. But he always, always listens. And then he responds to what he hears. I bump my toe on a piece of furniture, then he rearranges things and puts "toe bumper guards" on all the chair legs. I get annoyed (much too frequently) when things go wrong; Chuck fixes it. Never tells me. Just fixes whatever it is that is wrong and makes it right.
Chuck's childlike wonder and amazement at the world is refreshing. We spend hours talking about his observations, and I learn a lot from what he shares with me. This is my great fortune too. I am naturally a life-long learner, and Chuck has always been my educator.
Chuck also knows just how to support me. I often get over-committed and can't say no. Chuck discusses my passions and interests and helps me sort out what is best for me; not necessarily what's best for the community, the county, my professional association, or my place of employment. He has always looked out for me and kept me from harming myself by over-committing and running myself ragged.
Chuck knows that I wear my heart on my sleeve and am quite sensitive. I get hurt easily, especially when people say or do things that are contrary to being a good person and my character. I can't tell you how many times Chuck has just held me, let me vent or cry (or both) when I have been deeply hurt and supported me 100%. Always.
Some couples get into fights over recognition and who has prominence in the community and in the working world. Not in our case. Chuck has always been my champion. Rooting for me. Supporting me. Working behind the scenes taking care of things on the home front while I fly around the country executing the high-profile duties of not one, not two, but three jobs that had nationwide scope. And when I wasn't flying from BWI to PIT to Topeka to L.A. to Saipan, I was "flying" all over Montgomery County serving my community. Chuck has held the home front steady all these years.
Another fundamental reason that I am fortunate to have Chuck is somewhat self-serving, but I have to say it. If I didn't have him and our marriage, I would probably still have to be slaving away at some crappy, low-life job somewhere to earn an income, pay for health insurance, and the other expenses involved in keeping a roof over my head, clothes on my back, and boots on my feet. But because we are married – yeah, that "M" word that scares homophobes and conservative religious hypocrites and with the Supreme Court striking down Title III of the horrible "Defense of Marriage Act" that prohibited recognition of same-sex marriage rights – Chuck was able to extend his benefits as a Federal Government employee (and retiree) to me as his spouse. Chuck also changed his lifetime pension to provide a survivor's annuity to me in the event he pre-deceases me. These federal benefits extended to me as his spouse have been incredibly freeing. By having my Chuck and being able to rely on his federal benefits extended to me as his lawful husband, when I was treated
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like crap by a situation with my employment due to weak and cowardly supervisors, I could hold my head high and choose to retire. I did not have to worry about working to pay for insurance and expenses to keep my life rolling along smoothly.
In addition, Chuck is, by training and 40-year profession, a Financial Planner. He sorted out my savings and investments, and when we married, developed a joint investment strategy for our future in such a way that risk was reduced, capital was preserved, and growth would continue well after I had no more income from working.
I also have to say that I am fortunate that Chuck and I think much alike about money. We don't need or want fancy- shmancy cars or other yuppie trappings to "keep up with the Joneses." Heck, we don't need or want a sillyphone. Not having such a device saves us a minimum $1,000 a year. We are frugal; my siblings might say I'm cheap, but we don't spend money we don't have, pay our bills when they are due, and always keep within our budget.
I am not bragging. I am fortunate. Fortunate to have my Chuck who listens, plans, thinks, and as he says, "can rub two nickels together and not live in a piss-pot."
So for all of those who say that Chuck is "lucky" to have me – rubbish. Poppycock. I am indeed exceptionally fortunate to have him – my rock, my muse, my listener, my champion. And how lucky I am... we are... yes, indeed, I am lucky to be in love with my best friend.
Life is short: celebrate the one who is your fortune.
Medical Consent (Wednesday afternoon, December 30, 2020)
This is a painful update to write about my beloved husband, Chuck.
I received a call at home from the nephrologist (kidney specialist) caring for Chuck. He said that Chuck's test results indicate that he is suffering from Tumor Lysis Syndrome (TLS). According to the all-knowing Wikipedia,
TLS is where large amounts of tumor cells are killed off (lysed) at the same time by the treatment (chemotherapy), releasing their contents into the bloodstream. In oncology, this is a potentially fatal complication.
Holy shit!
Does this mean that Chuck has metastasized cancer somewhere in his body, and the chemo he got killed tumor cells? Does this mean the cancer has recurred? Does "Cousin Itt" – the squamous cell cancer on his scalp – have anything to contribute to this? Probably not, but there are so many unanswered questions.
I titled this entry "Medical Consent" to say that since Chuck is unable to communicate and is confused and bewildered, I was asked to give consent to a medical procedure. The nephrologist wants to take Chuck to an operating room to insert a catheter in his neck to give him dialysis for two or three days. He said this may, just may, reverse the damage to his kidneys caused by the infection of C. difficile and the TLS. Maybe. Maybe not.
I am authorized to give consent as Chuck’s health care agent under the legal Advance Directive that we had prepared in August.
This is a reminder: get your legal ducks in a row. Have an Advance Directive prepared properly, designating someone you trust to make medical decisions in case you are unable to do so. This is vitally important and one of the most difficult jobs of "adulting."
As of 1 pm today, I sit waiting at home by the phone for more information from the hospital doctor and the oncology nurse practitioner with whom I have developed a strong, communicative relationship.
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3:10 pm update: I finally spoke with the hospitalist. Chuck tolerated the procedure well and is asking for me (I found out later that the procedure actually was to insert a nasal-gastric tube, because a specialist determined that Chuck was unable to swallow the antibiotics that must be delivered orally). The Director of Oncology Nursing issued me an exception to the Covid "no visitor's" policy once more because Chuck is close to death, so I'm heading to see my beloved husband, hold his hand, and talk to him.
Life is short: ... so fragile ... oh, my beloved husband.
Updates (Wednesday evening, December 30, 2020)
When I arrived at Chuck's room in Sibley Hospital on Wednesday afternoon, I was emotionally devastated to see my beloved husband in such bad shape. He did not recognize me and was writhing in pain. Broke my heart.
I also learned that what the nephrologist told me when we spoke by phone on Wednesday was premature, and technically wrong.
Chuck does not have tumor lysis syndrome. While his blood test results line up with such a diagnosis, the oncologist on the team called me late this evening after I returned home from seeing Chuck and told me that he would have to have a massive tumor for TLS to be happening. TLS happens in patients with leukemia, but not with pancreatic cancer (PDAC) unless an active tumor is present. And we know that’s not Chuck's case, because a CT performed on Monday did not show tumor in the kidneys or liver.
Instead, after careful review of the lab results and cancer markers, Chuck still appears to be free of cancer. The real reason he is doing so badly is the Clostridioides difficile infection is causing his kidneys to be so overwhelmed, they can't do their job of cleansing the blood adequately. Thus, C. diff is the current cause of the kidneys failing.
However, more than that, the damned chemotherapy (Gemcitabine) damaged his kidneys in a major way. When he was hospitalized on December 11, his kidneys were not functioning as well as normal, and with the impact that chemo has on lowering immunity, he was ripe to pick up a nosocomial (hospital-borne) infection.
So that's where he got the infection. It took weeks to become this bad. A massive Clostridioides difficile infection is, indeed, life-threatening.
Tomorrow I will see the nephrologist together with the oncologist, a hematologist (blood specialist), the hospitalist, and whoever else composes the team. As a team, including me, we will figure out the next steps. That may include dialysis to clean up his blood and reduce the metabolites that have built up in his system that his kidneys can't eliminate. Dialysis has a benefit of maybe, just maybe, reducing the pain and returning Chuck closer to normal, out of the state of delirium he is in.
That's what is most distressing. His state of delirium is so bad. He is being given drugs for pain but is not sedated. He moans, screams, yelps, and does not know he is doing it. He cannot talk. He opens his eyes wildly, he screams, then phases out. Writhes around some more, then repeats. Hours and hours of this today... so scary.
Today, I held his hand, and I spoke to him. I used the in-room bathroom to have a good cry. I returned to hold his hand some more... love him... just love him. Sing to him. Smile at him. Praise his beautiful blue eyes.
Life is short: and growing shorter for my beloved husband.
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What To Do (Thursday, December 31, 2020)
Chuck is suffering from a severe infection of Clostridioides difficile which is causing renal failure.
Considering that his life is coming close to the end, I have been granted a waiver of the Covid-19 “no visitor" policy at Sibley Hospital for the duration, however long that may be.
For many months, Chuck and I talked about his wishes, and I will execute them faithfully.
What to do?
I am still not sure. I don't know if giving him dialysis will be of any help. If it will reduce the pain he is in and bring him out of the delirium so we can have a lucid conversation, then sure, I will approve that.
But Chuck does not want to live like this. Last night, I affirmed that the Advance Directive was on file which included a "DNR" (do not resuscitate) order, as Chuck wishes but can't sign for himself.
Chuck has an NG tube inserted to give him oral antibiotics added to the IV-pushed antibiotics he is receiving to treat the massive infection from Clostridioides difficile. However, I will not allow it to be used to give him nutrition if that would only prolong pain and suffering. He specifically stated in his Advance Directive that he does not want his life to be artificially prolonged if there is no hope for return to living a somewhat steady life.
What Chuck's wishes are, and what I will do my best to make happen, is to get him to a state where I can bring him home and bring on hospice to provide around-the-clock care so he can be with me, here at home, and die at home as he wishes.
BTW: I spoke with his only sister on the phone last night. She now knows how dire the situation is with her brother.
So what to do? How to direct prayers or meditative thoughts?
1. Ask that the infection of Clostridioides difficile respond to the antibiotics and get under control. Get the infection to a point such that I can bring him home. 2. Do not call me. I may not be able to take calls when I am at the hospital with Chuck, and I do not know my schedule or when I will be home. Also, when I speak with anyone in my circle or others (such as doctors) about Chuck, I am always on the edge of losing it. In order for me to be strong, I need to decide when and whom to call and not take calls, as well-intended as you mean it. I am not capable of handling calls FROM family or friends right now. 3. Do not email me directly with anything – at least right now. I can only handle so much. Exception: a few on this circle may receive an email from me asking questions or for specific advice based on your expertise. In that case, reply to answer me. Otherwise: don't email me! 4. By all means, do NOT post anything on FaceFarce! This is NOT public! I know this is hard for you, too; however, I ask that you respect my "do not call, email, or send stuff" wishes for now.
5. Ask that his pain and suffering be lessened. The writhing, moaning, yelping, and bewilderment is almost beyond my ability to endure observing, and IS beyond Chuck's ability to control. No one should be in such distress. 6. Ask that somehow, some mercy is granted such that I can bring him home again. Home; here with me. So I can hold his hand and gaze into his beautiful blue eyes again.
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What NOT to do:
1. Do not send cards, flowers, stuffed animals, or other "gifts of stuff." Chuck can't have it in the hospital; and here at home, I don't want reminders like that around. 2. Don't tell me "I am here for you" or "I am praying for you" or "keep hydrated and eat." I've heard all that so much and honestly, don't need it. Don't want it. I know you are "here"; you are my trusted circle. I know those of you who pray are praying. Also, I know that I have to look out for my own health, or I can't take care of Chuck and execute his wishes. I know all these things... don't tell me anymore, okay? 3. By all means, do NOT wish me a damned "happy new year." Sorry, but that's how I feel. Life is short: I am ending this for now... I am about all cried out....
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Chapter 7 Hospice, Saying Goodbye
The Hardest Decision of My Life (Thursday afternoon, December 31, 2020)
Usually December 31 during non-pandemic times is a festive party time. Instead, I arrived at Sibley Hospital at 7am this morning to be with my husband Chuck. He had been hospitalized since the Sunday before with a nasty nosocomial infection of Clostridium difficile. I finally broke through the “Covid no visitor” policy since Chuck was close to death.
I found Chuck in really bad shape, even worse than when I left him the night before. He was having a lot of trouble breathing and he had a nasogastric (NG) tube in his nose, down his throat. Where did that come from? Why was that there? Thus began a terribly difficult and fateful day of decision-making.
Chuck occasionally opens his eyes, glares at me with a "get me out of here” expression, but he cannot speak other than non-understandable vocalizations that the doctor says are due to the state of delirium he is in. He does know I am here. He squeezes my hand from time to time. But mostly he is sleeping and snoring softly. So cute, despite all this.
When I determined that Chuck needed some assistance from a nurse, to relieve the troubled breathing / gasping / pain and discomfort, I pressed the call button at his bed. I pressed it twice. Eventually someone said, “what do you need?” with an exasperated tone. I politely requested, “will you ask a nurse to come to room 518? My husband is in distress.” That request fell on deaf ears.
Ninety minutes later, a nurse came in. She said that was the time she was scheduled to help Chuck. She was busy with other patients and did not like being called or interrupted. No wonder they are so happy with Covid-19 “no visiting” policies. Keeps the family from being there to make demands, while patients who can’t speak, breathe, or advocate for themselves suffer. Chuck was treated with some drugs that cleared the congestion and seemed to alleviate his suffering for the moment.
Chuck kept reaching for the NG tube. It must have been irritating him a lot. I asked the nurse why it was there, and she said, “you have to talk to the doctor about that.” The nurse suggested perhaps restraining his arms to prevent Chuck from pulling out the NG tube, to which I replied, “absolutely not! You will NOT restrain him!” And that was that! I asked the nurse if she had read his Advanced Directive that specifically said, “no NG tube.” The nurse scoffed and said, “talk to the doctor about that, too.” Man, did I get hot.
I asked the nurse to find out when the Hospitalist will be coming. Again, she didn’t know. “On rounds now, I assume.” Then she stripped off her PPE, dropped it in a trash can by the door, and left.
By the time the nurse left, it was 9:30am. I held Chuck’s hand and continued to speak to him, hoping what I say will register. I kept saying, “I’m going to get you out of here,” to which Chuck slightly responded with a few vocalizations that sounded like a cry, “home.” It was so pitiful. I cried so hard.
When the Hospitalist showed up at 10:30am, I listened to her medical opinion about Chuck’s condition. It was very complicated, and I took notes (as usual, even though it was just for me.)
She explained that the NG tube was required to give him antibiotics that could only be administered orally. Since he had been declared “NPO” (“nil per os” or “nothing by mouth”) because he was unable to swallow, without speaking with me or getting my permission, they forced an NG tube into him in order to give him oral antibiotics for the C diff infection.
I pulled out my copy of the Advanced Directive and asked the doctor, “did you see this, especially the part about ‘no NG tube’?”
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The doctor said, “Advanced Directives only give instructions about NG tubes for feeding. This wasn’t for feeding; it was for treatment with antibiotics. That’s different. We haven’t given him nutrition through the tube.” So technically, she was correct and they had complied with the orders in Chuck’s Advanced Directive. But she admitted like the nurse did, that she did not have time to read Advanced Directives and “depended on family” to advise what to do in order to comply with a patient’s wishes when they cannot speak for themselves.
Then more doctors arrived. Hepatologist (liver specialist); two Nephrologists (kidney specialists); Hematologist (blood specialist); and Oncologist (cancer specialist) along with two others who introduced themselves, but it didn’t register with me who they were. Because I could see that Chuck was getting agitated with so many people in the room, I asked if we could speak elsewhere, outside of earshot. We moved out to the hall.
Discussions with all these doctors was confusing and a little overwhelming. All of them had different opinions. “Well, you can ‘try’ dialysis. It ‘may or may not’ alleviate the delirium. But in order to do that, he will have to stay another five days and have a new line inserted through his neck.” Chuck already had four lines into his veins (mediport + 3 IV lines.) And you’re suggesting an additional major intrusion with a venous line that ‘may or may not’ help?
Not only does this procedure present a surgical risk, it also presents another unwanted intrusion on Chuck's body that is clearly spelled out in his Advance Directive that he doesn't want. Plus, there is no real benefit to having dialysis. It is not known whether it would help. The oncologist said that he had seen cases of C. diff infections improve after dialysis, but he has also seen more cases not improve.
I relied on every scrap of medical knowledge I had ever learned. I asked all of these doctors tons of questions. They debated with each other in front of me. For a while there, I was observing this medical debate surround me and was not included in the discussion. These doctors all had different and sometimes conflicting opinions on what to do, and whether Chuck had a chance to recover from the infection that damaged his kidneys so badly.
As I was processing what I was hearing from these doctors, I could still hear Chuck inside the room, vocalizing. Those yelps were hard to hear. I could tell — I knew — he did not want to live like this.
I recovered from my dazed confusion and said, “doctors, thanks for your debate and suggestions. I am invoking my rights as given to me as my husband’s health proxy in his Advanced Directive. I want only two of you to remain and come with me into my husband’s room — Dr. (Hospitalist) and Dr. (Nephrologist). The rest of you — thanks for coming, now please just go.”
I did not wait for an answer. I put my PPE/gown back on and pointed to the Hospitalist and Nephrologist with a “finger pull” gesture, asking them to follow me back into Chuck’s room. They did.
I turned to Chuck who was awake and yelping incoherently to say, “Chuck, there are two options. You can stay here for another five days, have a line inserted through your neck for dialysis and see if that may help, OR, I can end this and take you home for hospice. What do you want to do?” I repeated this question three times with these doctors as witnesses so there would be no mistake.
Chuck could not speak, but I distinctly heard three words, “home, away, out.” Concurring with what I knew his wishes would be. Get out of the hospital, even if that means death soon to follow. So by noon, I had made the hardest decision of my life. I instructed the doctor to have the NG tube removed, stop further treatment, and help me get him admitted to Montgomery Hospice asap.
I explained all of these decisions to Chuck as if he were his usual self and could understand. I think he did, one way or another. But what I was doing was preparing him to die. I made THAT decision. Toughest.decision.ever. Ever. I credit the Advanced Directive for making it clear that I had the authority to act. No one questioned that and everyone complied once I made it known what I was doing and why.
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I also credit Chuck for talking with me several times about “what to do if I have to be your healthcare proxy.” We talked about it a lot, and I felt that I understood what his wishes were. (I tell you, though, it is one thing to talk theoretically, and quite another in reality.)
The afternoon was more quiet. They removed the NG tube and were giving him medications only for pain. They stopped all other medical treatment. Hospice arrangements were made. Transportation to Montgomery Hospice’s Casey House was also arranged.
I had a moment of self-doubt. I remember that I called my big sister and questioned, “did I do the right thing? Is there any chance of recovery? Did I just decide to let Chuck die?”
While my sister could only console me, she affirmed that I was thinking and acting rationally and that I made decisions informed by knowing Chuck’s wishes for having discussed this before with him. She has always had my back; she relieved my mental anguish.
New Year’s Eve, was no party. No fun. Hard, hard work. Toughest decision I have ever made in my entire life. And having to make that decision all alone while listening to Chuck yelping / vocalizing but not communicating was exceptionally difficult.
If you are reading this, make sure YOU and your spouse/loved ones have an Advanced Directive. While emotionally difficult, having such a legal document as well as talking about it, makes decision-making “when the time comes” easier. At least legally and administratively. Nothing about emotionally.
Life is short: have courage to make the hardest decision ever. Doing so is the strongest demonstration of love you can ever do.
Hospice (Thursday evening, December 31, 2020)
Working with an oncology case manager at the hospital, Chuck was referred to Montgomery Hospice.
I took a call from the hospice representative. Considering the New Year's holiday and weekend, as well as Chuck's condition, it would not be safe to transfer him to our house right away. I need to decide on arrangements for skilled in- home care providers and have hospice arrange to deliver a hospital bed and other necessary arrangements. I agreed to have Chuck transferred to Casey House, which is the skilled hospice facility near where we live. They have the right level of care, a low nurse-to-patient ratio, and only 13 rooms, of which only 8 have patients today. I electronically signed all the forms for Chuck's admission to Casey House. Chuck was transported to Casey House in the evening.
Chuck will stay at Casey House until I can get arrangements made at home, which likely will be Monday or sooner if I can do so. Hospice is for comfort care, not skilled nursing. No feeding tube, no IV, no medicines. Only drugs to make Chuck comfortable and ease his pain.
Hmmm... this wasn't quite how I expected to be spending New Year's Eve. I would much rather be scrambling eggs and taking on more oregano jokes from my friends with whom I have spent NYE for many years.
Life is short: execute your plans as discussed to honor his wishes.
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Peaceful Placement (Friday, January 1, 2021)
The transfer from Sibley Hospital to Casey House went okay on Thursday night. Chuck had been given Ativan before he left the hospital, so he was mostly out of it on the ride. When we arrived, I tried, "Squeeze my hand if you can hear me," but the request did not seem to register. He randomly squeezed my hand at various times.
The folks at Casey House were warm and welcoming. Chuck is now settled there.
When I arrived home from getting Chuck settled, I found a package on the front porch. Chuck had ordered me a flannel shirt for Christmas, which of course thanks to legendary U.S. Postal Service delays, arrived late. When I opened it and realized what it was, I completely lost it. But I am wearing the shirt today. I hope he will recognize it when he sees me in it this morning.
I will visit him every day and intend to work through the Casey House social worker to set up in-home skilled nursing, plus all of the necessary equipment, so I can bring Chuck, home where he wants to be. I just fervently hope he can make it.
Life is short: too damned short. Love your love like you've never loved your love before.
Return to Husbandhood (Saturday, January 2, 2021)
My beloved husband Chuck remains in hospice care at Casey House. I was with him all day. I had to make some difficult decisions, but throughout that, I could return to being a good husband and no longer Superman.
When I arrived at 8 am, Chuck was resting calmly. He would occasionally grimace, clench his teeth, and open his eyes, but he didn't acknowledge stimuli – squeezing his hand, calling his name, or (worse yet), my constantly singing to him. But I sang, held his hand, and talked to him all day. I figure he knows I am there, somehow, someway. I sang so much he MUST have known I was there, because he knows deep down there is not a moose pulling its hoofs from the mud making that noise in his room.
The Casey House physician sat down with me this morning and started, "It's a nice goal to bring him home...." That led me to believe that she was not recommending a transfer to home. She showed me the chart of his vitals, which are steadily declining. My beloved husband is approaching death on his own schedule into the Sea of Tranquility.
The concern was that the physical movement of transferring him into a specially equipped ambulance might injure him, and he could die on the trip home. The doctor said that if I really wanted to bring him home, I could, but I should know the risks. I thanked her for her advice but called for a second opinion from my trusted best friend, Keith. Keith stopped by and assessed Chuck's health, and also advised me not to transport him. That confirmed the decision to keep Chuck at the Casey House, where he is safe and under excellent and gentle care. It is not our house, but it is our Montgomery County, my home for my entire life.
The only thing I can hear Chuck saying is, "I paid all that money for long-term care insurance and won't use a dime of it! Not fair!" Well, circumstances change. I think he would understand. I tried to explain it to him verbally several times, but there was no sign of recognition of what I said.
What I like about Casey House in particular is that they do all the physical care, and now I can just be Chuck's husband. I am no Superman, and all that Caregiving these last six months took a lot out of me. Now I can focus on just being Chuck's husband and no longer Caregiver-In-Chief, with all the medical interventions that went with it on a daily basis, 24/7. No IVs, no pill schedule, no rushing to get this, do that, trips to the ER, doctors, pharmacies, and so forth. Behind me! I am more than relieved. I am really exhausted.
However, after handling making the decision to keep Chuck at Casey House, I then had to make arrangements for cremation. I selected Maryland Cremation Services. They faxed the paperwork to the Casey House. I completed it and the
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helpful people at Casey House faxed it back. If Chuck should die while I am not there, the Casey House will call me, and I will be able to see him one last time to kiss him goodbye. Then the people from the Crematorium will come get him.
To confirm... Chuck does not want a funeral or memorial service. He was absolutely adamant about that. He wants me to scatter some ashes on a garden where our pond is now in the back yard. Then, after pandemic-monia abates, he wants me to bring the rest of his ashes to Western Puerto Rico and scatter them in the Caribbean Sea.
Why there? We were there in February, and this is the only body of water where Chuck actually entered and let me hold him while he floated. He said, "Bring me there because it's the only ocean where I can swim." He also knows that I have many good friends in Mayagüez who will help me with these arrangements and support me. So that's what I'll do when the time is right.
I appreciate that the Casey House fed me lunch, and I owe a big thank you to my sister for going grocery shopping for me and bringing me a hoagie for dinner from a family favorite restaurant. I especially needed to hold my sister, hug her, and cry.
It has been a long day. Back at it tomorrow morning.
I do not bring my computer with me when I visit Chuck because I only want to focus 100% on my beloved husband. Computer, like Covid, be damned. No distractions from the love and more moose-hoof-pulling singing. While I sang many songs, this one was sung on request by my "little" sister:
You are my sunshine, my only sunshine You make me happy when skies are gray You'll never know Chuck*, how much I love you Please don't take my sunshine away
The other night Chuck, as I lay sleeping I dreamed I held you in my arms But when I awoke, Chuck, I was mistaken So I hung my head and I cried.
You are my sunshine, my only sunshine You make me happy when skies are gray You'll never know Chuck, how much I love you Please don't take my sunshine away It's okay, it's okay, to go away.
* "dear" replaced with "Chuck" because Chuck hates deer (for obvious reasons due to the Lyme Disease) – or any word that sounds like that animal.
The very last line change was to let Chuck know... as hard as it is... it is "okay" to die and no longer suffer. MAN, that was hard to sing, but he needed to hear it!
Life is short: love your husband.
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Two Words (Sunday, January 3, 2021)
I spent another day with my beloved husband who remains in gentle hospice care at Casey House.
When I arrived at the start of visiting hours at 8 am, I found Chuck restless. He was moving his arms, opening his eyes, clenching his teeth, and grimacing. Then he would stop, then repeat it all in a few minutes.
I showed him the photos I brought to hang on his wall – my Chuck as we remember him, not an invalid who has lost 55 pounds since just as recently as mid-June and is unable to fend for himself.
I also brought him Big Bear to growl a greeting. No one home... no registration of any words, growls, or my bad singing.
Side story: Chuck got Big Bear in Richmond, Virginia, when he lived there as a self-birthday present in 1990. I had to have Big Bear's growl of permission to date Chuck, and again, I had to get Big Bear's blessing to marry him. The name of our street is Big Bear Court because when we found where to build our house, the street had not been named yet, so I applied to have the street named in Big Bear's honor. There you have it! Chuck was so thrilled when that happened.
I sang to Chuck all day, regardless of the lack of response. I spoke with him and let him know how much he is loved and has been loved, and what a pleasure it has been to be loved by such a warm-hearted, generous, respectful, good listener, my man.
The hospice physician came in and checked him. The doctor said that Chuck’s decline is "progressing as expected," whatever that means. His BP was 99/60, but his pulse was only 12, and his respirations were down to 10 per minute (and continued to decline throughout the day to 6 per minute when I left when visiting hours ended at 8 pm).
At about 10:30 am, I was heartened and delighted when Chuck startled and opened his eyes. I stood over him and removed my mask. I held his hand and said loudly, "I love you Chuck!"
Then he said in the most feeble voice, "I". He calmed, took 3 more breaths, then opened his eyes, looked right at me, and said, "Love!" ... then faded into the Sea of Tranquility.
I got two words from my beloved husband, and I had a witness. I'm not making this up. Big Bear will verify. My last two words from my beloved husband were "I Love." Yes, he does. So do I right back (yes, this was my delayed Christmas miracle).
Casey House fed me lunch, and I rested with Chuck all afternoon, looking out the window at gentle rain falling.
I loved my husband one more day. Couldn't be better. I had two words and another day to love.
Today's song to note: It's Something That We Do by Clint Black
I remember well the day we wed I can see that picture in my head I still believe the words we said Forever will ring true
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Love is certain, love is kind Love is yours and love is mine But it isn't something that we find It's something that we do
It's holding tight, lettin' go It's flying high and laying low Let your strongest feelings show And your weakness, too
It's a little and a lot to ask An endless and a welcome task Love isn't something that we have It's something that we do
We help to make each other all that we can be Though we can find our strength and inspiration independently The way we work together is what sets our love apart So closely that you can't tell where I end and where you start
It gives me heart remembering how We started with a simple vow There's so much to look back on now Still it feels brand-new
We're on a road that has no end And each day we begin again Love's not just something that we're in It's something that we do
We help to make each other all that we can be Though we can find our strength and inspiration independently The way we work together is what sets our love apart So closely that you can't tell where I end and where you start
Love is wide, love is long Love is deep and love is strong Love is why I love this song And I hope you love it too
I remember well the day we wed I can see that picture in my head Love isn't just those words we said It's something that we do
There's no request too big or small We give ourselves, we give our all Love isn't someplace that we fall It's something that we do
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Holding, Holding (Monday, January 4, 2021)
Chuck is very close to death. I arrived today at 8 am and found that Chuck continues to decline more and more. He had a barely findable blood pressure of 62/30 that I got using a sphygmomanometer (manual blood pressure cuff and stethoscope from my own kit) when their automated machine could not find a reading on either arm. He is in a semi- vegetative state. Nothing I can do, say, or sing evokes a reaction. He is not in pain and is peaceful (mostly).
Chuck is producing a lot of secretions which cause his breathing to make sounds known as the "death rattle." It is really hard to listen to this. He also has many instances of apnea, so his breathing is irregular, and sometimes breaths are as far as 45 seconds apart (at the worst). Most breaths are 10 seconds apart, but he is having more and more apnea episodes.
Thanks to the Casey House for feeding me lunch, and to my sister for bringing me dinner. Thanks also to the Casey House staff for setting up a "bed-like" chair next to Chuck, so I can rest and still hold his hand. I have learned to do everything with one hand – dial a phone, write on this journal, eat, drink – everything. My handhold remains solid and unbroken with the man I married and love so dearly.
Since Chuck's death is imminent, the Casey House is letting me stay all night. I’ll be here as long as Chuck continues to live, and I'll have peace knowing I was with him, holding his hand, so he did not die alone.
May peace be with my beloved husband.
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Our Last Night (Tuesday, January 5, 2021)
To keep this memory, this is a record of my last long day through the night with my beloved husband, Chuck.
All day Monday, January 4, the hospice nurses kept telling me that Chuck was "near." The noise of congestion in his throat (the "death rattle") was getting worse, as well as the number and duration of long pauses of apnea (pauses between breaths).
By 7:30 pm, Chuck was still hanging in there, and I was not going to let go of Chuck's hand, so I called for the manager of the hospice to ask for permission to stay the night. Permission was quickly granted.
Chuck must have felt my hand holding his hand and may have heard me discuss staying the night. He continued to live on. I asked the nurse to help me set up a bed from a pull-out chair next to Chuck's bed. The nurse grabbed a padded cushion from a window seat in the room, piled on pillows, and raise this "bed thing" to the level of Chuck's bed. I lay down, never letting go.
I pulled Chuck's favorite ball cap over my eyes and face to block the light kept on in Chuck's room. Amazingly, Chuck's rattling breathing got more regular and quieter. I never let go.
I kept hold of Chuck's hand all night long. I never let go.
Chuck was quieting himself FOR ME so I could sleep. THAT is just like Chuck. He ALWAYS thought about me and my needs before his.
I think I fell asleep about 10 pm. I slept fitfully through the night. On occasions when I woke, I squeezed his hand and listened to his breathing. He no longer was making those cute piggly snorts.
At 6 am, I woke when the nurses came in at their regularly scheduled time to adjust Chuck in the bed and give him more morphine. They asked me to move so they could get next to him and adjust him. I got up and went to the bathroom while the nurses did their work.
Two minutes later, the nurses were done. I grabbed Chuck's hand again and listened ... was that apnea causing a long pause before the next breath? There was no next breath. Chuck stopped breathing when I let go. It was his way of "letting go" and not dying while I was in the room.
It truly was his last gift to me. Letting me have one last long night with him, holding his hand. And also, letting go when I left the room for a minute. The hospice people say that dying people do that with their loved-ones. I disbelieved it, until it happened to me.
Chuck was so peaceful. No pain, no suffering... just what hospice promises.
I held his hand for about another hour... until I finally had to let go. Man, that was hard. Real hard.
Life is short: death with dignity, honor, and love is what I promised; sadly delivered.
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Chapter 8 Obituary
Chuck Angelucci
Charles (Chuck) Angelucci was born in 1951 in the borough of McKees Rocks, Pennsylvania, a suburb of Pittsburgh. Chuck attended local public schools and graduated in 1969.
Chuck attended the University of Pittsburgh and graduated with a bachelor’s degree in economics in 1973. While waiting for results of his Civil Service Exam, then to be placed on a roster for consideration of hiring by a Federal Government agency, Chuck worked odd jobs for a year after college graduation.
Chuck was hired by the Federal Government in 1974, first working for the USDA in Harrisburg as an intern, then was offered permanent placement and moved to the U.S. Dept. of Agriculture State office in Madison, Wisconsin, in 1976. Chuck worked in Madison until 1983 when he transferred for a promotion to Financial Analyst, CDBG Programs, at the Dept. of Housing and Urban Development (HUD) field office in Richmond, Virginia.
Chuck was promoted to a Financial Analyst position at HUD Headquarters in Washington, DC, and moved to work there and live in an apartment in Arlington, Virginia, in 1992. Due to HUD reorganization which would have forced a move out of the DC area in 1998, Chuck took a lateral transfer to the Dept. of Commerce Economic Development Administration (EDA), again, as a Financial Analyst on state & local loan programs of a rather complex portfolio.
In 2003, Chuck transferred back to the USDA, this time at Headquarters Rural Development Program in downtown DC.
It didn't take long for Chuck to prove that his close attention to detail was exceptional. He was promoted to Senior Financial Analyst in 2006. Then he was promoted again in 2009 and worked on large, complex USDA rural loan programs for the remainder of his career.
When an opportunity for a buyout became available in early 2013, he took it. Chuck retired in January 2013 with 41.4 years of creditable Government Service.
A life-long learner, Chuck enrolled in the University of Maryland Global Campus (formerly University College) in 2014 and took courses in history. He loved history and loved learning on-line. Chuck did so well that he graduated with another B.A., summa cum laude, this time in U.S. History in December 2018. Why? No reason – he just loved to learn.
Chuck met Rocky on April 25, 1993, in Washington, DC, at a mutual friend's house. It was love at first sight (and as Rocky says, "on first embrace.")
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Rocky and Chuck loved to travel "two-up" on Rocky's Harley. They rode all around Maryland, as well as long trips to Oklahoma and Sturgis, South Dakota. Rocky loved having Chuck as his riding partner. Chuck was always better at navigation long before GPS was available for motorcycles.
They also enjoyed traveling to see the USA and other countries, too. They visited 42 states, territories, and provinces/territories of Canada over their long time together. Chuck often joined Rocky on his business travels to several U.S. cities in nine states.
Chuck and Rocky visited Australia (five times), New Zealand (twice), and Germany, Austria, and Italy with Chuck's Mom in 2003.
Chuck especially enjoyed the Valentine's trip in February 2020 to Puerto Rico, and a 3-week trip to Hawaii in March. Chuck loved exploring new places through Rocky's eyes and especially enjoyed Rocky's passion for places he loved and had been to before.
Chuck also loved photography explorations and enjoyed many visits to Maryland state parks this year.
Chuck and Rocky built a house in Rocky's hometown (and home county, Montgomery) and moved in during October 1998. Once same-sex marriage was permitted by the Maryland Legislature in 2012 and upheld by voting against a referendum by Maryland voters at the election of November 6, 2012, Rocky proposed to Chuck. His response, "of course I will marry you, silly!"
Rocky and Chuck were married on April 4, 2013, in the Montgomery County Courthouse in Rockville. Their "marriage" gift to each other: retitling their house as "tenants by the entirety." Chuck and Rocky both insist, "we didn't have a wedding – we had a marriage ceremony." "No frilly-froo-froo" were Chuck's exact words.
The marriage cemented a relationship "as married" since Chuck and Rocky first met.
Chuck and Rocky finally celebrated a honeymoon in Toronto in July 2019.
Chuck and Rocky lived a 27-year, 8-month love story.
Chuck leaves his husband, Rocky; a sister, a nephew, a niece, and one Great niece. He may no longer be on this earth, but his memory lives long and strong.
Chuck has requested no funeral or memorial service. His body will be cremated. Half of the ashes will be scattered in the back yard of their home in a garden that Chuck designed and directed Rocky to build for him.
The other half of the ashes will be scattered on the Caribbean Sea, off the coast of Western Puerto Rico. This was chosen for two reasons: 1) Chuck said, "this is the only ocean I can swim in," after visiting in February 2020; and 2) Chuck knows that Rocky has a strong network of friends in Puerto Rico who will support him as he performs this act of love for Chuck.
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Chapter 9 Memories about “My Chuck”
Since I am using this journal to document my last months with Chuck, I was urged to record from time to time funny stories or things that Chuck did that are significant and special and will be cherished memories in the future.
I agree it is important to document my Chuck, the man with whom I fell in love and married and who was my better half. No one on Earth knew him as well as I did. Few people actually knew him at all. Chuck was always very private, shy, and generally a recluse. I was his only friend; he (and “we” as a couple) did not have friends. No one knew him as an adult in his last 30 years other than me.
His antisocial character was observed in his mother and had something to do with a failed relationship in his past that scarred him emotionally. But trust me, Chuck had his moments of levity, humor, good will, generosity, romance, and faith.
Chuck Thinks Ahead (Postscript addition, May 18, 2021)
On Monday May 17, 2021, a FedEx truck drove up about noon and pulled backward into my driveway. At first I thought the driver was turning around, but he got out of the truck and slid open the back. He climbed up and put a big box on the lift and lowered it to the ground.
Intrigued, I scrambled out to ask what was going on. I had not ordered anything!
The driver showed me the box’s label addressed to me at my home address. The box contained a Weber Spirit II e-315 Grill. The FedEx driver was kind enough to wheel the box on a dolly into my garage.
Immediately, I thought this was a gift from family or friends close to me. I called Keith; he denied knowledge. I asked my sisters and some buddies at the fire department. “Not me” was the response.
I was truly baffled. But I couldn’t solve the mystery right then as I was due at a vaccination clinic to volunteer s and I had to leave. I told the guys who were building my deck about the baffling delivery and that I was leaving, then mounted my Harley and rode off.
On return from the clinic about 7:15pm, I saw a pickup truck from Home Depot in my driveway. Just as I parked my bike inside the garage, a nice young man walked up from the back yard to get into the truck. I asked him who he was. He said that he was sent to assemble the grill. “Go see it — it is on your deck.” What? Huh? I guess my deck builders were kind enough to help the guy get the grill onto the deck (which was a feat, since the stairs to the deck are not yet complete!)
I asked the Home Depot dude who sent it, and he said that he didn’t know. He thought I paid for it and he was sent to assemble it for me (which is odd, because they assemble grills at the store, not at buyer’s houses.) I called the store manager. We had become friends over the years of assistance with community projects.
When I reached the Store Manager, he “spilled the beans.” He told me that Chuck called him last November to arrange to buy a new grill. Chuck explained that we were going to have a deck built in the Spring, so once the deck is ready, to deliver the grill. The Store Manager called me soon after Chuck died to express his condolences, so even back then, he was keeping this a secret.
That gift and method to surprise me is so like Chuck. He knew that our old grill needed to be replaced. We had briefly discussed getting a new one, but only after the new deck was built, whenever. Neither Chuck nor I knew back in November when a new deck would be built. At the time, we put the deck project “on hold” pending more and more intense caregiving needs for Chuck. Even then, Chuck didn’t think he would live to see a new deck but wanted me to be happy and enjoy a gift from him.
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The Store Manager explained more. He has to drive past my street on his way home. So every few weeks, he has been riding by my house to see if a deck was being built. Now that you can see the deck from the street, he had his answer.
Since the Store Manager could not keep an assembled grill at the store without having it picked up within a few days, he put Chuck’s order “into the system” in a “pending” status. Once released from “pending,” it generated a delivery-from- warehouse “ticket.” The warehouse chose to use FedEx to deliver it to my home instead of the store.
When the Store Manager got confirmation that the grill had been delivered, he dispatched an employee to my house to assemble it. How nice!
Chuck was always the most thoughtful “gift giver” I have ever known. He planned gifts well in advance. For example, while cleaning out his attic, I found five years of birthday and Christmas presents intended for me. Talk about planning ahead!
My beloved husband — always the most thoughtful and most generous. I will love using this grill, but sure wish Chuck were here with me to enjoy it, too.
Life is short: love the love you get from your husband and the beyond.
Chuck’s Sense of Humor (December 9, 2020)
Context: Chuck is in his wheelchair with me holding it as he was checking in at the medical oncology center at Sibley Hospital for his next chemo treatment. The receptionist looked at me and started asking questions like, "What is his name and date of birth?" Chuck raised his hand and said, "Hey, I'm down here."
The receptionist looked a bit shocked. His gesture signaled her about what I have been saying before: talk with the patient, not the pusher of the wheelchair! Just because he's in a chair does not mean that he can't hear, speak, or answer questions!
The receptionist asked again, "What's your name and date of birth?" Chuck answered. Then she asked the routine questions required for Covid-19 screening, "Do you have a new cough? Chills? Fever? Loss of taste or smell? Shortness of breath? Congestion or runny nose?" etc., etc.
Easy replies: no, no, no, no, no (we answer "no" even though Chuck has had a fever and chills, because we don't want to trip again into a Covid ejection). Then she asked, "Have you traveled out of the country since you were last here?"
... which was yesterday.
Chuck looked at her and said deadpan, "Well, yeah. After leaving here yesterday, we drove to Dulles Airport, got on the Concord, flew to London, got a Covid-19 vaccination, and flew back this morning. That's why I look so tired. I don't sleep well on airplanes, even supersonic ones."
Our receptionist didn't know what to say. The other receptionists, checking in other patients, as well as a number of patients waiting in line behind us, all broke out laughing. Then our receptionist said, "Oh, I get it... the travel didn't happen, did it?" We just laughed some more, and Chuck closed the conversation by saying, "Well, we wanted to, but the Concord stopped flying in 2003... kinda before all this pandemic stuff."
The receptionist joined the laughter and gave us our wrist bands. She opened the door to the infusion center and said, "You know where to go – fly safe!" Off we went, giggling.
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During routine and uneventful chemo infusion: the story must have traveled. Several infusion center staff stopped by Chuck's treatment cubicle and said things like, "What's the Concord like?" "How long was the flight?" "Did you have any delays at Customs?" "What was the shot like?" The story spread about this patient and his oddball sense of humour (British spelling, of course)!
Life is short: travel by Concord to England probably would have been fun.
Chuck Was Always There for Me (December 11, 2020)
This is another memory of My Chuck. It is among the top reasons why I fell in love with him.
While Chuck is quiet and reserved, his intuitive perception of others’ need for him to "be there" is exceptional.
Back in 1993, I was overwhelmed with working a demanding job with national scope and purpose that required frequent travel with more than 70 trips a year and over 100,000 air miles each year to everywhere in the U.S. to conduct training, speak at conferences, and attend meetings. The travel had me away more than here.
Meanwhile, I had purchased my second house that I intended to rent, once it was fixed up. The 1200 square foot, 1946 Glenmont Forest bungalow had seen much better days, and a LOT of work needed to be done to renovate it. I did not have the money to hire a lot of contractors, or a general contractor, to do these repairs. Plus, with my experience in doing that for my first house, I knew what had to be done. Between travels, I was doing a lot of manual labor on that house: tearing out rot, rebuilding walls, replacing plumbing and electrical systems, updating appliances, replacing the roof, windows, doors, and other exterior items like rotted soffit and facia.
As Chuck wanted to spend time with me, he would come over, and while he did not have the skills or knowledge of building or renovating, he was a great helper. He would see me try to do something, and just be there to help, hold something, pull a wire, lead a pipe through a channel, everything. Weeks and months would go by, and he was always, always there. Helping. Holding. Even applying Band-Aids to me when my klutziness would cause me to injure myself.
On top of that, Chuck was "there" in other ways. We would go back to my condo in Wheaton for meals while working on that house. He would see laundry piled up, the bed an unmade mess, and a dirty bathroom. While I was cooking, he would do my laundry, clean the bathroom, make the bed, and vacuum the carpets. All without asking. He came, he saw, he conquered (my messes)!
Then on September 11, 1998, a Friday, I went to Chuck's apartment in Arlington after work. We were going to have dinner and relax at his place before an early call for me to teach the next morning. As usual, I called Mom for my daily check-in call, but she didn't answer. I thought maybe she was in the bathroom, so I tried again a half-hour later. No answer.
I tried calling Mom several more times and got worried. I called my sister who lived closer to Mom at the time. She and her husband went to check on Mom. They found her in her den. She had suffered a cardiac arrest and had died suddenly. My sister called me and told me to come to Mom's "because I can't wake her up."
I began to melt; I knew what must have happened. Chuck held me, then carefully put me in his car and drove to Mom's, 22 miles and what seemed like hours away. I do not remember that drive, other than being angry at the Friday-night traffic backups on the Beltway delaying our arrival.
Yeah, Mom died that night, and it was a morbid scene. When someone dies alone, the police have to investigate to make sure that there were no suspicious circumstances surrounding the death. The cops were the first people I saw when I entered Mom's condo. However, I remember that they were kind and compassionate.
All the while, Chuck was "just there." He held me, let me cry on his broad shoulders, and listened. Always, always, he was "there" for me in my darkest hours and times of need.
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Mom knew that Chuck was always going to take care of me, and in recognition of such, she listed Chuck to be a pall bearer for her funeral. That was touching and made a memorable statement.
Fast-forward to Nov. 10, 2004. That's the day I gave notice that I would resign from the American Red Cross. [content explaining circumstances deleted... but let's say that I was devastated] I was home, waiting for Chuck with this news. I heard the garage door open. I went out into the garage and as soon as Chuck got out of his car, I lost it. I melted into his arms, awash in tears.
He was there. He held me. He just held me.
He led me into the house and into our family room. And held me. Just held me. All the while, perplexed why I was so upset, but couldn't talk.
I've said before that he is the world's best listener, and that night he proved that once again. It took me hours to compose myself. All the while, he held me. Just held me.
MY Chuck is always there for me. He holds me. He loves me. He listens. But most of all, he is THERE.
Life is short: I am "there" for my husband, "always," as he has "been there" for me.
Passion for Trams (December 20, 2020)
This is another "Oh My Chuck" story to remember my beloved husband's interests and to share information about him that most of my family and friends are not aware of.
Saying that Chuck is passionate about trams (aka "streetcars") is an understatement.
Chuck can tell you almost anything about the tram systems operated anywhere in the world.
His passion dates back to his childhood, when streetcars were still running in Pittsburgh, and he would take rides from his adjacent suburb borough into the city and back with his mother. He did not do that often, because he was dependent on going with an adult. By the time he was old enough to ride on his own, the trams had stopped running and the tracks were torn out of the streets. He would tell you that this happened due to the major influences of General Motors, Ford, Chrysler, and other major automobile manufacturers on marketing and selling cars to the detriment of public transit. He's right.
These days, trams still run in some major cities. That is one of the reasons we chose to visit Melbourne, Australia, on our first trip to that continent in 1996. Melbourne has the largest and most extensive tram network of any city in the world.
I can't tell you how excited Chuck was when I bought him a week-long unlimited pass for Melbourne's tram system. You'd think he’d died and gone to heaven, he was so happy.
At the time, I sent away for it in the mail and received it a few days before Christmas, 1995. I put it in a huge box, packed it with a lot of cotton fill, wrapped the box, and gave it to him that Christmas. When he finally got to his gift, he shouted and jumped for joy.
When we were in Melbourne and rode those trams, Chuck would give me a running narrative about each particular tram, where it was built, its route, its schedule, and on and on and on and on. You can see from the adjacent photo that, well, my interest wasn't quite the same as his. We rode and rode and rode trams for a week! We rode all 22 of the tram lines mostly from
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end-to-end. Occasionally we would take one tram route one way, then transfer to a different route and go another way, then transfer again... again... again. All-day tramming put Chuck in heaven!
We have a few trams here in North America, too. I got him a present for Christmas, 2008 of a "behind-the-scenes" tour of the Philadelphia tram system. We drove up there in April 2009, for a day's tour on a reserved tram that ran all over the city.
Again, I was treated to another narrative about each line, each segment, and each type of car we rode on. During the entire ride back home, the narrative continued. He talked about this trip for months afterwards. He continues to watch YouTube videos about Philly's trams to this day. He has a full library of them, as well as hundreds of other tram systems of the world.
I also should mention that the National Capital Trolley Museum is about a mile away from where we live. We have visited this museum often, though it is rather small and has just a few tram cars from different areas of the world. Nonetheless, Chuck appreciates this museum and continues to support it through financial donations. I encouraged him to become a docent and lead tours, but he declined. He does not want to see people or speak in public.
Chuck had been talking about Toronto's tram system a lot, as the second most extensive tram system in the world. He and I both have been to Toronto before – with Chuck to ride trams (of course!) and me for Red Cross business. We also went there together on one of my speaking engagements in October 2003 and took a long weekend to – ride trams!
After Chuck's 2005 hip replacement and embarrassing strip search by TSA in 2009 in Chicago, Chuck refused to travel any more by air. It was also uncomfortable for Chuck to sit in a cramped airplane seat for an extended period of time.
However, in 2019, I was sensing his interest in traveling again. I used his passion about trams to get him to agree to take a short non-stop direct flight to Toronto in July. Air Canada has non-stops from BWI to Toronto. I got first-class tickets for his comfort.
We called this trip our long-awaited honeymoon. Chuck was in heaven. We had a blast – riding and riding – and listening, of course, to Chuck's non-stop narrative about each line, each car, and every neighborhood we traveled through.
Oh my Chuck... his passion and love for trams is a tremendous memory and I love him for introducing me to it and sharing his passion for it with me all these years.
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Chuck’s Love of All Things Ziggy (December 24, 2020)
In recognition of a dear friend's advice to share stories that few people know about my beloved husband, today I share Chuck's love for all things Ziggy.
Ziggy is a diminutive, bald, barefoot, almost featureless character (save for his large nose) who appeared in a comic strip drawn by Tom Wilson, first published in 1971.
Ziggy lives in a simple house with a garden, and he is often seen working at an office job. His foibles often reflect the absurdities that many readers encounter on a daily basis.
Ziggy is an animal lover, and is the owner of a number of pets, including a dog (Fuzz), a cat (Sid), a parrot (Josh), goldfish (Goldie), and a duck (Wack), all of whom seem to possess some anthropomorphic qualities. Despite their often playing a part in Ziggy's mishaps and misadventures, the love and affection he gives to and receives from his animals is often very different from his interactions with the various human beings he encounters during his days.
One of the great appeals of the comic strip is how Ziggy deals with the endless stream of misfortunes that befall him on a daily basis.
I once asked Chuck, "why the passion for Ziggy?" His reply: "His life is so much like mine."
While converting old 35mm slides for Chuck the other day, I found a photo of Chuck receiving a gift of a Ziggy apron for Christmas in 1977, so the passion and adoration of Ziggy goes back a long, long time. When we met and I visited him the first time, I saw a number of Ziggy characters in his apartment.
Chuck introduced me to "Big Zig" – a Ziggy that Chuck bought in Richmond, Virginia, in the early 80s. Chuck has kept him in the original plastic bag he came in, to preserve him. Chuck occasionally talks to Big Zig, and when we were introduced, I was anxious to receive Big Zig's approval to date his human (inside joke).
Through the years, Chuck's passion for Ziggy continued. I love to see his smile, delight, and joy when he sees Ziggy characters in print and in other forms.
In 2003, I scored the ultimate "Ziggy jackpot" – I found a collection of Ziggy characters for sale as a lot on eBay and bought them for Chuck for Christmas. He was so happy, he cried. We have these Ziggies on a windowsill and see them every day.
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Until 2015, we could find Ziggy greeting cards in drug stores. We would get each other a Ziggy card for birthdays, other occasions, or sometimes just for fun during all the years we've been together. I have kept all of these cards that we gave to each other, frequently with love notes to each other written inside in our own scribbles. In 2012, I found a collection of these cards on eBay and bought them for another Christmas gift. Chuck was so happy, he again cried with joy. That was a particularly difficult year, because it was when he was really sick with Lyme Disease and we were still chasing treatments for it.
Also over many, many years, Chuck received as gifts or bought for himself Ziggy Christmas ornaments. We have five of these cherished ornaments on our tree. Chuck doesn't like tree decorating, except when it comes to his Ziggies.
He carefully unwraps each one and hangs it in a prominent place on our tree. I love to see him do this for the light of love in his beautiful blue eyes.
For another Christmas sometime in the mid-2000s, Chuck told me about a 30- minute TV special titled Ziggy's Gift. This special was aired on broadcast TV only once on December 1, 1982. In this animated feature, Ziggy takes a job as a street Santa to raise money for the poor, accompanied by his faithful dog, Fuzz. Surrounded by crooked Santas, sneaky thieves, and a suspicious cop, Ziggy remains honest and kind. This is soooo Chuck. I found this feature first in VHS form, then on DVD a few years later. We watch it together every Christmas Eve.
One final... and sad... Ziggy/Chuck story is that a former neighbor and good friend of mine, Laurie, obtained prints of Ziggy drawings signed by the artist, Tom Wilson. Laurie had 3 of these drawings displayed in her condo. When Chuck saw them, he would spend hours admiring each one. Unfortunately, Laurie died in 2000. Knowing Chuck's passion for these drawings, Laurie left them to Chuck in her will. It was quite sad how we got these drawings, but we have them displayed prominently in our home as cherished pieces of art. Yeah, Chuck is my "Ziggy guy" – a man who loves the downtrodden but keeps pushing on, despite life's foibles.
I love my Ziggyman and always will remember my beloved Chuck whenever I see a Ziggy anywhere.
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Chapter 10 Synopsis of Symptoms, Treatment, and Care
Chuck's trials and travails began in late June, 2020. This journal entry is a summary chronology of Chuck's cancer journey over this period of time: where we were, what was found, what was done, what happened, hospitalizations, home care, and more.
Early June: Weight 182, BMI healthy 28. Mowed the lawn and helped me plant a new garden. Who knew what was to come?
In Puerto Rico, Feb 2020, before this all began June 29: Chuck had a visit with a new primary care physician. He had been experiencing mild symptoms of a rash and itching, along with mild abdominal pain, bloating, dark (tea-colored) urine, and clay-colored stool. He also wanted to see a liver specialist, but that didn't work out because a primary care physician (PCP) visit was required first. His PCP ordered a first round of comprehensive lab tests, followed by a CT of the abdomen.
July 5: Chuck is jaundiced... badly. He has lost 10 pounds, inexplicably.
July 14: Chuck endured an Endoscoping Retrograde Cholangio-Pancreatography (ERCP). During this procedure, a surgeon installed two stents in his bile duct to restore bile flow from the gall bladder to the colon and eventually eliminate the itching, jaundice, clay-colored stool, and dark urine. The surgeon also did an exploration of what caused the blockage of the bile duct in the first place. Chuck has lost another 10 pounds, down to 162.
July 14, evening: Results of the ERCP procedure were released to us. This was the first time I read the words, "suspected cancer of the bile duct at the Ampule of Vater."
July 22: Official pathology report of "strongly suspicious tumor" and referral to a surgeon "with urgency."
End of July: More lab tests and CTs before scheduling surgery.
August, October, and November: Chuck wanted to go on "photo explorations" to take pictures of wildlife. We planned and went on several outings. Chuck was especially enamored with horses for some reason. We found some happy to pose.
August 20: We had updated Wills, Advance Directives and Living Wills, HIPAA releases, and Powers of Attorney for each other finalized and signed with our attorney.
August 24: Chuck had Whipple Surgery at Johns Hopkins Hospital in Baltimore. A 2.3cm cancer mass was successfully removed, along with three lymph nodes. All margins were clear. Weight down to 154.
September 2: After nine long days in the hospital, Chuck was discharged.
Chuck continued to suffer from post-hospital PTSD. Seriously difficult times.
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September 12: We received the complete pathology report from Chuck's surgery. Confirmed: Pancreatic Ductile Adenocarcinoma, Stage IIB. I was in shock; Chuck shrugged and said, "It's my bad luck."
September 23: We met the referred oncologist, who laid out a treatment plan, including chemotherapy after surgical recovery.
September 25: Post-surgical blood clots (DVTs) were found through ultrasound imaging. Blood thinner prescribed.
September 30: Chuck had a 1-inch large bulging lesion of suspected skin cancer scraped from his scalp by a dermatologist (I call this thing "Cousin Itt").
October 12: We received a phone call from the dermatologist with the pathology report from the lesion scraped from Chuck's scalp. Confirmed: squamous cell carcinoma with peripheral nerve involvement. He couldn't win for losin'. With chemotherapy looming, Chuck decided to put off MOHS surgery for this lesion.
October 18 & 23: We enjoyed our last extensive photo journeys to Greenbrier State Park (18) and the Catoctins (23).
November 2: "Cousin Itt" (the squamous cell carcinoma on Chuck's Greenbrier State Park scalp) had grown back; it was removed again and cauterized prior to undergoing chemotherapy.
November 4: Chuck received his first infusion of chemotherapy, using 5-FU, Leucovorin, Irinotecan, and Oxaliplatin, in a cocktail called "Folfirinox." Six hours of in-hospital treatment, followed by 46 hours of in-home infusion using a pump. Weight down to 138.
November 11: Chuck reacted poorly to the chemotherapy. He had extreme peripheral neuropathy pain from the platinum-based chemo drug Oxaliplatin. The side effects were intolerable.
November 12: Chuck had a rather miserable birthday.
November 16: Chuck spent the day in the in-unit "urgent care" at Sibley Hospital's medical oncology unit. His blood counts were so low and he was so dehydrated that they gave him IV fluids. "We've never seen it this low!" Chuck's oncologist advised that the chemo approach will be changed and this cocktail was declared "intolerable by the patient."
November 25: Chuck received the alternate approved chemotherapy with an infusion of Gemcitabine and oral Capecitabine. Last "Us" photo, Nov. 3, 2020
November 27: It only took two days for poor ol' Chuck to have a reaction to Gemcitabine severe enough to require me to take him to the emergency room. He ended up admitted to Sibley Hospital, where ER doctors confused his chemo reaction with a non-existent cellulitis infection and more DVTs.
November 30: After 3 days of being poked and prodded while the doctors chased infection and DVT ghosts, Chuck was discharged from the hospital. Weight stabilized at 134.
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December 2: Another visit with the oncologist, and another infusion with Gemcitabine. Mild but controllable fever followed but went away. Oral Capecitabine continued.
December 11: Chuck spiked a rather high fever and was hospitalized again. Once more, a Gemcitabine reaction was confused with a non-infection, more DVTs, and a non-problem of a supposed pulmonary embolism due to tachycardia. Chuck had no other symptoms, yet the hospital doctor and cardiologist chased more ghosts because they were unfamiliar with what a severe reaction to Gemcitabine looked like.
December 14: After being poked, prodded, tested, and treated, Chuck was discharged from the hospital.
December 17: Chuck had delayed side-effects from oral Capecitabine, mouth sores ("mucositis") so severe that he could not eat for five full days. He had severe pain preventing him from eating which resulted in losing 8 more pounds, now down to 128.
December 18: In-person visit with the oncologist. Chuck was declared "unable to tolerate adjuvant chemotherapy." We were told that Chuck could consider taking oral Capecitabine only, which was, in the oncologist's words, "slightly better than nothing." He was scheduled for the next in-person visit for January 6 to "evaluate the tolerance of single-drug chemotherapy."
December 22: Chuck felt more and more lousy with more frequent diarrhea, listlessness, chills, and fever. With Christmas coming up, hospital personnel were increasingly unavailable.
December 25: We had a horrible Christmas. Chuck made some decisions about what he will and won't do. He was growing weaker and looked worse by the hour. I was at a near-panic stage, but Chuck insisted on "No hospital!"
December 27: Chuck was in such bad shape – weak, suffering massive diarrhea, fragile – that he let go of his resistance to going to the Emergency Room at Sibley Hospital. Once again, he was admitted.
December 28: Chuck was diagnosed with a hospital-induced infection, colitis caused by Clostridioides difficile. The infection is a CDC-reportable, really nasty, organism.
December 30 - 31: I was able to see Chuck in the hospital. He became delirious and unable to communicate, so I was granted a waiver of the Covid-19 “no visitor” policy and allowed to see him in person. After meeting with many doctors, evaluating his situation, and honoring his wishes in his Advance Directive, I pulled him out of the hospital and had him transferred to Montgomery Hospice's Casey House.
January 1 – 5: Chuck was unable to communicate except for two words, "I Love" – his way of saying goodbye to me. His condition continued to decline. He was comforted by hospice care, as was I. I could return to being a husband, and no longer Superman. I visit with him all allowable 12 hours each day, and stayed the night of January 4, our last night together. I held his hand all night long, never letting go.
January 5, 2021: Chuck died at 6:00 am, after I finally let go of his hand. I wrote and published his obituary, so people would finally know who Chuck really was.
Life is short: love your love like you haven't loved your love before.
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Chapter 11: Afterword
Five Months (Saturday, June 5, 2021)
I had to let go of my beloved husband Chuck five months ago. Man, I cried and went numb. I still feel quite sad that he’s not here, but I am at peace since he is no longer suffering. I remain in deep grief that will never go away. However today, why I am feeling guilty for feeling alive in spirit to be living a new life that Chuck would want me to live?
I am torn, but as I learn from weekly meetings with my bereaved spouse’s support group, feeling mixed is part of the grief process at this stage. It is different for everyone.
I think of Chuck often, many times each day. I hear a noise in the house and perk up, thinking it was him. I see squirrels chase each other while I am at his garden on completion of morning meditation. I find new things that Chuck “squirreled away.” I listen to Chuck’s gift to me – Chef Guido – guide me on the day’s meals… all of it. Chuck is present. Chuck remains alive in my heart, always.
All of Chuck’s financial affairs are squared away. On meeting with Financial Advisers, I am setting my course for a comfortable life in a different kind of retirement that I had not planned.
I have increased my knowledge of Spanish fluently enough to converse with the clientele who I am vaccinating in my role as a paramedic. Me — a vacunado comunitario right here at home, serving my neighbors.
Me — pinching myself — I am a fully-licensed paramedic! Again — who woulda thunk? Me — administering thousands of Covid-19 vaccinations — half in recent weeks to adolescents.
I am up to my eyeballs in volunteer work for my professional association, the International Association of Emergency Managers. Organizing awards judging… scholarship commission meetings … Awards Task Force… then also beginning to write the report for the NOAA science panel on which I serve as Co-Chair. You name it, I am busy.
I finally had the old deck that Chuck was worried about demolished and replaced. Further, I had our master bathroom remodeled just as Chuck had envisioned.
Earlier this week, I was trying to organize something to do today (June 5) to get out of the house so as not to dwell on “the fifth.” Plans to visit a favorite cousin didn’t work out; plans to ride my Harley with friends didn’t happen either.
Then this morning as I was meditating, I thought — why not? Call some senior pals and see if they want to go grocery shopping in person. It has been 15 months since we last did that! After all, we all are fully vaccinated. Four friends eagerly said “yes!” I picked them up and took them to a favorite grocery store.
As we were wandering the aisles, I thought I heard faint humming. No, singing. My friends asked me to join in to sing “Together Again” by the Muppets.
Should I feel guilty singing? Last time I sang was to Chuck for his last 48 hours. I have not felt like singing ever again. Thanks to my beloved “senior pals” for coaxing joy within me today. Yes, I cried… but that is part of healing, too.
No, I don’t feel guilty. I feel alive … living a purposeful life again, as Chuck would want me to be. Chuck would be angry with me if I felt guilty; he much rather would want me to live and live strongly with renewed purpose. As I am living with grief that will always be with me, I have a better understanding of what some of my close friends who have lost loved-ones are dealing with too.
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It is hard to say, but now truly “knowing deep grief,” one can feel even more empathy for the excruciating grief that close friends are feeling. I truly hope my friends know how much I love and admire them for their strength and resilience.
Attributed to Colin Murray Parkes (1928): The pain of grief is just as much a part of life as the joy of love; it is, perhaps, the price we pay for love, the cost of commitment.
I will always have grief. But I will always have love in my heart, given freely to me by the man who captured my heart, held it gently, cared deeply for me, and was – and remains – my soulmate.
Life is short: live on — rich remains the memory of the man I loved, honored, and cherished. Always. Forever. My husband is in my heart.
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