Surviving Cancer/Sustaining Self (Part II)

In a prior post, I described several practices that sustained me during my prolonged treatment for acute myeloid leukemia.  Here I describe additional practices and some favorable circumstances that helped me cope throughout my odyssey.

A Secular Mindset

While many people rely on religious faith in a medical crisis and while I respect such beliefs, I followed a different road.

It didn’t start that way. My parents were nominal Catholics and I was raised in that tradition. I was baptized, took first Communion, was confirmed, and attended Sunday Mass with my family into my early teens. With the onset of puberty and a teenager’s classic sense of immortality, however, Catholicism lost its relevance for me. I fell away from a religion I had never fully embraced.

After drifting through my teenage years, I enrolled in college and became enamored with philosophy and sociology. I found their emphasis on scientific observation, logical reasoning, and rational explanation to be much more compelling. I became a “child” of the Enlightenment, a practicing sociologist, and a secular humanist.

One benefit of this world-view is described in Philip Zuckerman’s Living the Secular Life: New Answers to Old Questions. He notes that secular-minded people may actually weather challenges such as a life-threatening illness more readily than someone who is religious. For the latter, such an event may precipitate a crisis of faith and a quest to restore that faith while also dealing with their illness. For the secular-minded, there is no crisis because there was no ultimate faith to be shaken in the first place.

This could allow secular-minded folks to more readily adopt a pragmatic, problem-solving attitude toward life’s misfortunes. This attitude was certainly reflected in the pro-active stance that I brought to my treatment. Whenever possible, I sought to act and solve problems in ways that would foster my recovery. When that wasn’t possible, I learned new levels of patience and non-judgmental acceptance from my practice of mindfulness. And finally, I also accepted that there was an irreducible element of luck or random variation that would influence the outcome of my treatment.

My beliefs allowed me to arrive at a good place during a bad time. The secular world view I had nurtured my entire adult life was like a comforting companion on the roller coaster ride that was my diagnosis, treatment, and eventual recovery.  Like my other coping mechanisms, I don’t know if this one had any direct bearing on my successful outcome, but it certainly sustained my sense of self over the long haul.

Privilege, Care, and Support

Alongside these coping strategies, my healing and recovery occurred in a larger context that was unusually privileged and highly favorable for my successful outcome.

First, my employer provided excellent health insurance that covered virtually all my major expenses. My longevity in my position earned me a year of paid sick leave, covering the period from the onset of my disease to my retirement date.

After retiring, I maintained a version of this same good health insurance and began receiving a significant pension. Thus, I had the good fortune to not have to worry about financial constraints on the decisions I made and the care I received. (My privilege should be everyone’s right in an “advanced,” industrial nation, but that’s a whole other talk show.)

There was an interpersonal aspect that worked in my favor as well. As a highly educated, professional white male, I was taken seriously and treated respectfully by everyone I encountered. When I responded in kind, all my interactions with medical personnel were congenial and productive. This helped give me the confidence to be my own advocate.

My self-advocacy reminded me of a friend (who is a registered nurse) who believes every hospital patient needs an advocate to represent their needs while navigating the complexities of hospital care. If they are unable to play this role themselves, a caregiver advocate should be assigned to them.

Another positive factor was the quality of care that I received throughout my treatment within two major hospitals. There were, of course, too many forms to complete, some silly bureaucratic impediments, and some truly awful hospital food. But when it came to the important things, the care I received was simply superb. My doctors and nurses consistently combined skill and expertise with compassion and empathy in ways I will never forget or could ever repay. Suffice it to say, my stereotypical views of the medical profession have been forever transformed into a profound appreciation.

Alongside that care, it would be impossible to overstate the benefits of the social support I received from my spouse, relatives, friends, neighbors, and colleagues. Through their hospital visits, phone calls, emails, get-well cards, gifts, and the key lime pie my wife and her sister smuggled into my room, I was continually reminded of how many people were pulling for me, praying for me, thinking of me, and sending me positive vibes.

I am deeply grateful for my privileged status, excellent care, and social support. And I’m acutely aware that others without my privileges may not receive the same level of care. For me, these privileges made it much easier to implement my various coping strategies. But the inequalities of privilege are also a reminder that however much we may try to control our destiny, outcomes are always intertwined with larger forces beyond our control.

Medical Miracles and Good Luck

There were several additional factors beyond my control that nonetheless contributed to my survival.

One was generational timing. Put another way, my parents picked a good time to bring me into the world. As a baby boomer, I lived into my sixties before contracting a life-threatening disease that was incurable throughout much of the twentiethcentury. I am humbled by the fact that the stem cell transplant procedure that saved my life has only been available for a couple decades.

A brief history. The first successful bone marrow transplant occurred in 1968 at the University of Minnesota Hospital. A further advance came when French researchers transplanted stem cells from umbilical cord blood in 1988. The first successful cord blood transplant in the U. S. followed in 1995. The Blood and Marrow Transplant Unit at the University of Minnesota Medical Center has since become a leader in umbilical cord blood research and transplants. In the fifteen years before my diagnosis, they performed almost 1,000 such transplants and were routinely achieving successful outcomes.

As a beneficiary of this medical progress, my procedure began with a week of high dose chemotherapy and full body radiation that destroyed virtually all my diseased bone marrow and white blood cells. That paved the way for a genetically matched, umbilical cord blood transplant. The “transplant” is not a surgical intervention; it is simply a transfusion of donor blood that introduces new stem cells into the body.

Once there, the stem cells just “know” where to go to begin producing new bone marrow and all the cells needed for a healthy immune system. The umbilical cord came from one of the donor banks that have only been established in recent years but are now available world-wide for patients seeking a cord blood donor.

In addition to this medical miracle, I also benefitted from some old-fashioned good luck. As a poker player, I have often pondered the parallels between playing that game and making life decisions. Both require acting with incomplete and imperfect information, and the stakes can be quite high.

If we draw on our rationality and intuition, we can assess the risks, calculate the odds, check our gut, and make the best decision at the time. In the case of my transplant, the “house” was offering odds any poker player would relish, but the downside was a 15-20% mortality rate from the procedure itself. So, I could expect to “win” at least 80% of the time, but otherwise, it would be game over.

That sobering scenario led me to take my time, do my homework, examine my options, get second and third opinions, and reach a measured decision to go ahead with the procedure. As good as such decisions may be, however, outcomes in poker and life are still subject to unpredictable and unknowable factors. For all our proactive efforts to control outcomes, it’s healthy to retain some humility in a universe that can still roll dice with our fate.

Writing My Story

My final, and most important, coping strategy was writing my story. It began within a week of my diagnosis and initial hospitalization when I penned a long email to some neighbors to update them on my status. Over time, my recipients grew to over fifty people and the missives ballooned to over sixty reports narrating my cancer odyssey.

My ostensible goal was to keep people informed, and I was rewarded with supportive feedback from many who responded with kind words, timely advice, heartfelt prayers, and good wishes.

It eventually dawned on me that my story telling served an even more important purpose for me. Each day in the hospital brought a new and dizzying array of personnel, medications, tests, scans, side-effects, cautions, and complications. While I received excellent care, it was an overwhelming initiation into the world of cancer treatment that left me feeling highly vulnerable and utterly dependent on the care of strangers.

The best way I could make sense out of it was to write about it. Composing these reports became a psychic survival mechanism.

Story telling can take many forms and serve many purposes. For me, translating inchoate emotions, complex treatments, mysterious side-effects, and unexpected complications into a coherent narrative tamed my fears and preserved my identity.  At a time when there wasn’t much I could control on this roller coaster ride, telling my story allowed me to be the author of my own life.

It was many months later that it dawned on me that there could be a wider audience for the story I had been telling. I hope to reach that audience with my recently published memoir.