Maintaining an Active Brain and Body—Even With Cancer
What do you do after accepting your fate?
Posted September 15, 2018
In 2015, I retired after an enjoyable and rewarding career as a member of the faculty in the Department of Psychology at UC Berkeley. My goal during retirement was to stay active and become a freelance writer in the hopes of sharing my interests to a general readership. Along with my wife, Helen, and Kazuko, my 93-year old mother, I moved to Hawaii (which I still consider paradise on earth) and began working on a book, Get SMART! Five Steps Toward a Healthy Brain. The five steps can be remembered using the acronym, SMART—Get Social, Get Moving, Get Artistic, Get Responsive, and Get Thinking.
In 2017, I began having occasional bouts of nausea and loss of appetite. Over the next five months these symptoms worsened, and after a CT scan, I was given the diagnosis—terminal pancreatic cancer. My oncologist informed me that my condition was treatable with chemotherapy but not curable, and I could expect a life expectancy of six to nine months. The goal was to minimize metastasis yet give me some quality of life so I could enjoy my remaining months. I did not go through the Kubler-Ross stages of grief, though I think some friends and relatives did it for me. I have lived a happy and engaging life—both with my family and my career—and, as such, I went straight to acceptance.
When diagnosed, I was just finishing Get SMART!, and thus I became exceedingly motivated to complete the project. In fact, at the time I was sending out letters to literary agents in the hopes of finding representation and getting a publishing contract. I realized that my time was too limited to follow this typical route to publication and decided simply to self-publish the book without any fantasy that it would become a bestseller—but at least it would be available to a general readership. Following my fervent goal of self-publishing the book, I did what most terminal patients do with their remaining time: I tried to enjoy my life on a day-to-day basis, relishing the time with family and friends and trying to appreciate every available moment. For me, that meant enjoying the company of my wife and a small but wonderful circle of friends—and going to the beach as often as possible!
Months passed with regular chemotherapy followed by its typical side effects—flu-like symptoms for several days with episodes of nausea, fatigue, and light-headedness. Fortunately for me, the chemotherapy has been successful in reducing my pancreatic mass and retarding metastasis. Other than the side effects of chemotherapy, I have survived 15 months since being diagnosed without much pain. I have no feelings of denial, bargaining, or depression—I have accepted that at some point, perhaps fairly soon, the chemotherapy will stop being effective, and I will worsen and die. My mother died several months prior to my diagnosis, and in many ways, I am grateful that she went before my time. Helen has been a saint through this ordeal, and I can thank her for making my remaining months as wonderful as they have been given our circumstance. (I now realize that sadness and grief are much more of an issue for family and friends than for the patient.)
I write this now to inform patients with terminal illness—and those actively involved family and friends—about my experience in terms of psychological (and physical) health issues during these trying times. It is not my interest to be maudlin or even to inspire optimism, only to offer some ways of coping with problems. At the outset, the plan was simple and easy to implement—accept my condition, try to live life to the fullest, and appreciate every moment. Yet as months go by without much serious pain, other than a week or so of chemo side effects, one begins to habituate to life with cancer and not appreciate every moment so consciously. For me, the primary problem was that I could not be nearly as active as I was—both mentally and physically. With chemo sessions and fatigue, I could not travel outside the island and had to decline teaching opportunities offered graciously by the Department of Psychology here at the University of Hawaii. I stopped my daily swimming regime and did not feel motivated to write—why waste my time on projects I likely could not complete? Indeed, I started to neglect my own proselytizing of getting SMART!
After nine months, I began to realize that I may receive a stay of execution and should begin to make an effort to Get SMART, even with terminal cancer. Helen helped in scheduling social events with local friends. There were times when chemo symptoms made me too tired and apathetic to even think about initiating a social event. Yet just an hour or two of chatting and joking with others completely lifted my spirits. I also made a point to make one meal—lunch in my case—my daily social hour, almost regardless of how I felt. This meant wonderful meals chatting with Helen and my son, Gregory, who was able to spend several months hanging out with me after receiving his Ph.D. in molecular biology.
As for getting artistic, I spent some of my wife's inheritance (i.e., my savings) on new photography equipment and tried to go out and shoot as much as possible. Fatigue has prevented me from too many artistic excursions. I am, however, happy with one of my shots, which was taken under a pier near my favorite place in the world—Waimanalo Bay Beach Park (don't tell anyone I mentioned this beach).
In terms of getting responsive and thinking, I decided to break out of my mental apathy and revitalize my blog writing. Although writing a book would be out of the question, I could spend a week crafting a blog on a topic of interest. Prior to my diagnosis, one of my goals was to write a book geared toward students and teachers that offered a whole-brain approach toward improving academic skills. Instead, I ended up writing a series of blogs on lifelong learning directed toward a more general audience. Having completed this task, I compiled the blogs, rewrote and added text so that it was again directed specifically toward student learning. This booklet, MARGE: A Whole-Brain Learning Approach For Students and Teachers, is available free as a pdf to anyone interested.
It turns out that my biggest problem is to get moving. As many know, red blood cells take a big hit following chemotherapy, resulting in severe fatigue and shortness of breath. At times, just moving from the bedroom to the kitchen was strenuous. With such fatigue and little motivation to exercise (Why work on my physique when I may die next month?), my life was spent in a chair reading or corresponding with friends on the mainland or just napping in bed. Now, after months of sessility—not unlike the orchid sitting next to me—my muscles have atrophied to the point that I'm having some difficulty walking up stairs and lifting myself from my chair. I joke with Helen that with my bald head and loss of muscle mass I went from swimming a mile almost daily to looking like a turtle without his shell.
At this point, my fear is that even though the spirit is willing, I'll become so weakened that I may not be able to partake in my current joys (eating out, going to the beach) or deal with necessities (getting to the doctor's office). Of course, there will be a time when the downhill slide will weaken both spirit and muscles, but I'm not there yet. At this stage of my illness, I am now making a public commitment to work on getting moving! To strengthen my legs and arms, I've come up with an exercise program involving three positions—standing, sitting, and lying in bed (the latter two positions I feel I can do at any time after chemo). Standing position: for legs, the wall sit—lean with back against a wall and knees bent for ten seconds; for arms, the wall push-up—face wall and lean forward doing push-ups as if the wall were the floor. Sitting position (which can be done on the side of the bed): for legs, virtual steps—alternate lifting legs up as if exaggerating stair stepping; for arms, virtual chair rise—with palms at your sides and pressed against the bed, lift body up slightly as if rising from a chair. Lying position (in bed): for legs, pelvic thrusts—on back with knees up, use legs to lift pelvis above the bed; for arms, palm isometrics—on back press palms together firmly (as if praying) for three seconds. I'm committing myself to daily reps of 10 for each of these exercises.
My mother's last year of life was also physically difficult. I did try to encourage her to walk around the house and to try the virtual steps exercise while sitting. She sometimes made the effort but more often refused. My admonition to family, friends, and caretakers of terminal patients: Assist, but don't insist! At this point in my life, I certainly do not want anyone telling me what I should do, regardless of their good intentions.
I do plan to Get SMART for as long as I can. My current goal is to begin a writing project unrelated to psychological issues. It is called A Walk Around Oahu: A Personal Pilgrimage. When I first moved to Oahu I wanted to get to know its people, culture, and history. I had just watched a PBS show on religious pilgrimages, and it gave me the idea of walking the perimeter of Oahu—not all at once, but doing a day hike to a point, resting a day or two, then doing another day hike from the last end point. My book is meant to be part armchair travelogue, part travel guide, and part cultural anthropology. I have deep trepidations, as there is a strong possibility that I may not finish the whole story. Yet with encouragement from Helen, I'm going to begin the journey.
I would like to give my deepest appreciation and thanks to the nurses and staff at the Straub Outpatient Treatment Center (Honolulu, HI) and to my oncologist, Dr. Ian Okazaki. Words cannot express my gratitude to my wife, Helen, who has steadfastly been there during my time of need.
I will end with a haiku I wrote that was based on a photograph I took last year:
reflections of summer days
be with you always