Perspective: Day-to-day realities of a cancer patient managing her disease
by Diana Kerman
Editor’s Note: We continue our occasional series on patients who are either survivors of serious diseases or who have become patient advocates. The remarkable thread that runs throughout this series has been the stamina of these patients in the face of wearying therapies, their resilience in the face of adversity, and the need for patients to be their own, best advocates. In this instance, we have an elderly patient who has managed her cancer for the past seven years while going through a variety of tests, treatments, therapies, and setbacks. Some treatments were combination therapies, some sequential – all with hopeful benefits but also with frequently debilitating adverse effects. In addition to the effects of cancer and the related treatments, she has been dealing with all the other issues that arise while managing a serious disease – depression, peripherally-related health conditions, and family matters. Despite all these hardships and setbacks, life goes on. We encourage readers to consider contributing their stories for this series or asking a family member, friend, or acquaintance to contact us about their experience. We invite you to read on.
Part 1. Dealing with my Diagnoses, Doctors, and Treatments
My diagnosis of cancer in 2013 was a shock! The first harbinger was when my ischemic colitis revealed a questionable site during a review of my X-ray scan. Upon release I went to a urologist and sauntered into a waiting room filled with men. I thought how lucky I was to only have a urinary tract infection (a common occurrence for women my age) rather than prostate cancer. Unfortunately, the urologist discovered large tumors in my bladder that had not yet penetrated the bladder wall. He invited me to see the tumors – I only wanted an invitation to disappear. I was terrified!
From here on, I met with many specialists for consultations, referrals, testing, and procedures. After two tumor removal surgeries and the indignity of a urine bag, I underwent Bacillus Calmette Guerin (BCG) regimen, the most common intra-vesical immunotherapy for treating early-stage bladder cancer.
Fortunately, I found an oncologist who was a trove of knowledge and kindness. He spent the first part of my appointment getting to know me not as a cancer patient, but as Diana, a real person with family, friends, and strong feelings about life and death. The doctor took me into my new chemotherapy regimen of cisplatin and gemzar and introduced me to the nurses. I thought I was being sent to a dungeon full of dreary patients hooked to IVs and scary equipment, but as my sessions progressed, I realized cancer affects all classes, races, ages and genders. For me, the hardest thing was to see young people who should have a long life ahead. After all, I was already in my 80s and comfortable with my life choices.
With time, the nurses knew me and saved my favorite chemotherapy chair, making me feel very special. The treatments tired me, but I returned to my life … socializing, teaching, exercising and traveling. I was on an upswing!
Suddenly in 2016, out of the blue, I grew confused. An exam indicated nothing, but the doctor suggested someone stay with me at home. The next morning, when the doctor called, I was completely out of it. He told us to go to the ER. I had suffered an embolic stroke, likely caused by the cancer thickening my blood.
After the diagnosis I entered the hospital stroke unit. At first, I didn’t know my name, couldn’t button my blouse or plan my steps to the bathroom. Except for bouts of colitis, I hadn’t been hospitalized since the birth of my last child more than 50 years earlier. My body had completely failed me, and I was furious. Where was the justice? I had eaten broccoli rather than potato chips! No one in my family had cancer. I completed simple puzzles to maintain cognition, colored within the lines for visual-motor skills, and balanced on one foot for solo showers. I often felt like I was back in kindergarten.
After more than three weeks of hospitalization, my strength and stamina improved. I was placed on a blood thinner costing over $175 a month. My family joined in my “release home” session. While I looked forward to my own space again, I realized now, “I am disabled!” I had come to feel safe in the hospital.
Part 2. Ongoing recovery and rehabilitation
My home has since changed and reflects an old, disabled person with secured scatter rugs and bars in the shower and up the steps. Not only am I disabled but I now lived in a disabled home! How would I manage my dramatically changed life? To make matters worse, I gave up driving after almost hitting a pedestrian in a crosswalk. My trusty 1995 Subaru now has a teenage driver and eyelashes on its headlights.
A close cancer friend recommended Harmony Hill, a retreat for cancer patients and their caregivers. This weekend retreat is funded by the Nordstrom Foundation and located on the Olympic Peninsula in Washington. The beautiful setting lends itself to serenity and relaxation. I invited my older daughter, who lives on the opposite coast, to accompany me. We spent a long weekend together at “cancer camp” reaching my goal of parent-child close bonding. Group cancer discussion with young patients was not comfortable for me. As an older cancer patient, I was facing death beyond the shock of diagnosis.
“After the diagnosis I entered the hospital stroke unit. At first, I didn’t know my name, couldn’t button my blouse or plan my steps to the bathroom.”
After I returned home, I found a well-trained therapist to help me face and accept my future. I am fortunate to have friends who cared for me and with whom I discussed my life options. The pharmacist told me about Compassion and Choices, (www.compassionandchoices.org) an organization helping those dealing with the end of life. Their mission is to improve care, expand treatment options and empower everyone to chart their end-of-life journey. I began to learn more … watched videos, attended lectures, read books and investigated the use of psilocybin.
Physical therapy is critical for cancer patients to maintain health. I have always been a hiker, having walked the Camino from Leon to Santiago Spain at age 70. I still walk 2-3 miles a day and climb hills until my pain becomes unbearable. My strength and stamina continued to improve.
Pain and depression have been constant throughout this journey. Depression is intermittent, difficult, and unpredictable, it strikes unexpectedly. I try to use positive strategies to stave off the worst of it. Pain management requires honest communication with my doctor. Chemotherapy necessitates blood draws before treatment. I implored my doctor to insert a port and then became frightened when Pradaxa, the blood thinner, had to be temporarily suspended. Except for the oncologist office, each blood draw with a port caused a problem. Only a few nurses knew how to access a port which added confusion and wasted time. My body can’t handle any of the opioids and marijuana stopped being effective. I now take morphine to help me sleep and eat.
Chemotherapy started to lose its effectiveness, despite more cisplatin and Tecentriq (at the most difficult stage of my treatment). I began daily radiation for five weeks. Some days I received both radiation and chemotherapy. I was tattooed so the radiation could be applied to the exact spot of my tumors. My grandchildren thought it was comical that I had almost invisible tattoos. Radiation made me very sick and miserable. Daily nausea and explosive diarrhea were side effects. I was cleaning the bathroom floor at 3AM. Purchasing Depends was almost as embarrassing as buying condoms as a kid.
I grew sicker and a stent was inserted to open a blocked vein in my right leg. At the time I was so sick I hardly remember the day of the surgery. I came home the day before Thanksgiving. I have always valued cooking Thanksgiving dinner. It is a command attendance for family! This Thanksgiving, I rested in my large chair and my kids served ME the Thanksgiving dinner.
This is the sickest I have been.
A spreadsheet created for 25 rides to and from radiation was filled by friends and family. Friends who signed up late and found no openings suggested a lottery. A friend took notes when the doctor gave updates and sent the notes to my kids. I felt too sick to concentrate on the information. A friend picked me up when I fell at home. Another called family members for help when I was too sick to ask for help. The local pharmacist belongs to Compassion and Choices and came weekly to fill my pillbox to save me from errors.
My insurance includes home care from a nurse, PT, OT and shower aide. All this was invaluable. especially when the PT rode my bus with me and my walker to help me negotiate the steps and walk to my seat.
In the summer of 2017, I received a short session of Taxotere and I only lost my hair. It came out in clumps. I threw it off the deck into the yard, hoping the birds collected it for their nests. Except for temporary baldness, my body was able to recover again. I wore an array of knitted hats identifying myself as a cancer patient until my hair returned. Otherwise I was thin but looked like myself.
After each treatment series, CT scans suggest new treatment based on disease progression. On CT days I shower, place lidocaine on my port, select clothes allowing access to my port, ride a medical transport to the hospital, drink a terrible-tasting solution, wait an hour for liquid absorption, have a blood draw and have the scan. I walk home if I feel well enough (about 2 1/2 miles). So goes the day. It leaves time to argue, by phone, with the insurance company. Why was a drug paid last month and this month rejected? After all the sole difference was the pill was in a jar rather than a blister package. Each January the formulary seems to change, and insurance companies make many errors. I’m glad I’m assertive and persistent. Be your best advocate!
Part 3. Where I am today
I see an array of doctors and most are wonderful. While there is no direct medical cause for my ongoing GI and dental issues, the radiation and chemotherapy have taken a toll on my general health. Another doctor and a dentist have joined my cadre of care.
I also started to see a doctor who provides complicated, scientific discussions when I only want to know what decision is needed at the moment. Doctor Science started to discuss a complicated bladder rebuild performed elsewhere in my city. I asked how many had been performed.
“Only three,” he says.
“How are the patients now?” I ask. “They all died,” he said.
All dead! I try to restore a more positive interaction … “But were they older?” I ask.
“Oh, no, your age,” he says.
I continue, “Sicker than me? “ “No, just as sick,” he responds.
Finally, I firmly told him, “STOP! What do we need to decide today?”
l know when to ask questions if I need more information, but good doctors also know how to read body language, recognize uncomfortable responses, and adjust accordingly.
Of late, tumors have moved into my lymph system. Two radiation series have been somewhat successful. My ace in the hole lost its effectiveness. For now, a pain patch sits against the tumor in my neck and constantly reminds me of cancer in my lymph system. I am tired of being sick, tired of doctors, scans and hospitals! This is not quality of life, but pain patches are enough to get me through the day.
Affected by visual and motor skills deficits from my stroke, I walk with a cane and use public transportation. I keep abreast of new hairdos (self-image is therapy), Tai Chi improves my balance, and a Kindle controls print density to help reading. My financial affairs are in order. I only see positive-minded friends and relatives, people who touch me, who only ask simple health questions. My friends do not speak about their health unless to report new medical information. Children or grandchildren are not mentioned unless they have won a Nobel Prize. We speak of substantive topics and things of common interests.
Part 4. The emotional life of a cancer patient is a roller coaster! And preparing for the end.
Throughout this journey, I saw many doctors. Each doctor reported information with a different style. For me, the best method is filled with empathy and compassion. I became accustomed to being poked and prodded, but I did not lose my fear. My trepidation led me to the warmth and compassion of my kindly internist who has cared for me for over 20 years. With encouragement, he described the “normal” lives of his bladder cancer patients. As he wiped away my tears and hugged me, he referred me to his mother’s oncologist. Meanwhile my therapist guides me on decisions about dying and stopping treatment. Since my diagnosis, many friends have stopped touching me … as if I am contagious. My doctor’s HUG is now an unforgettable memory.
I attended the graduation of my granddaughter and thought I was managing well until the pain by my bladder became unbearable. The cancer was now near my iliac system close to my hip. I needed more specialized treatment.
For me, activity, consistent routine and simple meditation can often bring me into remembering positive thoughts. I think about the unknown teenager who stopped his bike and offered to carry my groceries home. Or the young law student with whom I’m working on the homeless issue in our community (my current state brings home some of the realities of the homeless). Or the young friend who asked me to guide her on how to treat me and alerted me to the necessity of guiding my friends and family. They are dealing with the sadness of the changes in me. I happily recall the Japanese tourist sitting close to me while traveling, who spent her time dining making two origami cranes to wish me good health. They sit on my mantle as a reminder of travel and good times.
As an older patient, I have been asking myself where I am in my life. I think of my accomplishments, teaching special needs children, building bridges with family and handling this debilitating disease. Just recently I had a deep discussion with my youngest grandchild, a college freshman. She is negotiating this confusing world as it opens to her. An image of her as a 40-year-old came to me, someone I will never see and love. Good times spent with all five grandchildren were difficult to retrieve.
Death with Dignity is available in Oregon. I found my Advance Directive and Physician Orders for Life-Sustaining Treatment (POLST) to make sure they were current. I introduced my son, my Executor, to my lawyer and asked my out-of-town daughters to give him support if he needed to make quick medical decisions. I have spoken with my oncologist about the details of implementing ‘Death with Dignity’ and plan to purchase the medication when the time draws near. I am lucky my family prides itself on open communication. I share my cancer diagnosis and all aspects of my care with my two daughters and son. While I know how much they care, they can be overbearing. Once when I went to the mountain with a friend and cell phone service was limited, they called the police to find me. Open communication is important, but the family must appreciate that sacrifices imposed on cancer patients require occasional privacy to come to grips with ones’ condition.
I am not ready to give up the fight. As I go through the world with optimism about the next generation, I comfortably face my future. My kids are comfortable with cremation and want a memorial service. They asked for service guidelines subject to family revision. A friend and I have collected readings and poems. For a post-memorial service reception, I prefer a simple buffet – But No Oreos I insist, and my kids laugh.
Diana is currently retired, having left the Portland School District in 2000 after spending 30 years teaching and diagnosing specially-challenged students. She represented her professional organization at many forums and served on community, city and state boards. Diana now spends her time continuing with community service. Diana enjoys traveling, gardening, spending time with her family and friends, reading, and hiking in the outdoors of the Northwest US. Born and raised in New York, she has lived in Oregon for the last 50 years. She still maintains the assertiveness of an East Coast person and that has served her well as being her own best advocate on her Cancer journey.