This sidebar to the feature “Cancer for the long haul” written by Wendy Harpham, MD, discusses her recurring non-Hodgkin’s lymphoma.
My future felt like the flip of a coin. If the cancer treatment worked — “heads” — I’d live. “Tails” — I’d die. So when my post-chemo scans documented a complete remission, I assumed I’d won the coin toss and could start putting cancer behind me.
But before my one-year checkup, just as I was finally feeling healthy again, I was in my doctor’s office murmuring, “Please don’t give up on me.”
Having cared for patients in my medical practice who did everything right and died, I feared my newly diagnosed recurrence marked the beginning of the end. It didn’t.
Over the next 15 years, my lymphoma kept responding to various courses of treatment. Invariably, my cancer returned, usually within months — but most recently after a glorious seven-year respite.
Not cured and not dead, I’d unexpectedly landed on the proverbial edge of the coin. Cancer books and resources didn’t speak to patients like me, living in a no-man’s land of survivorship. My “episodic cancer” — for lack of a better term for this repeatedly recurring cancer — posed unique challenges not faced by patients in treatment, in a first remission or at the end of life.
During my third remission, heightened fear of another recurrence spoiled otherwise good times. How could I enjoy a fine day if that night I might — again — find a new lump while showering? How could I trust my body to keep me well, knowing another recurrence was not just a possibility but a likely scenario?
My liberation from life-sucking fears hinged on a realization: “I can simultaneously accept the likelihood of an unwanted outcome and hope for the best possible outcome, no matter how improbable.”
This notion of balancing acceptance and hope pivoted on an acceptance of uncertainty. Much to my disappointment, I believed intellectually in accepting life’s uncertainty — even embracing it — long before I figured out how to do that.
Defying the vocal “think-positive” brigade, I stopped wasting energy trying to convince myself that this time I was surely cured. Paradoxically, accepting that I was likely to need treatment again freed me to nourish genuine hope that I wouldn’t.
Indisputable facts helped me, too, by providing a solid foundation for hope.
FACT ONE: Frightening statistics don’t apply to me. Unlike all the past patients whose outcomes determined the statistics quoted by textbooks and doctors, I have access to the newest therapies, including those available in clinical trials. As for tomorrow, still better therapies may become available, should I need them.
This is not pie-in-the-sky hullabaloo. The six courses of treatment I received between 1993 and 2007 were not options when my cancer was first diagnosed in 1990. Cutting-edge therapies have enabled me to outlive my original prognosis twice over (and still counting). And by the way, don’t call my cancer “incurable.” It’s one of the types for which researchers are working on cures. You watch: The textbooks are being rewritten.
FACT TWO: Cancer didn’t make life uncertain; it simply exposed the uncertainty of life. After losing survivor-friends whose prognoses were better than mine, I’ve stopped comparing. Prognoses are not predictions but educated guesses. Uncertainties.
Uncertainty gets a bum rap in American society. When my cancer is in remission, do I want to know if my cancer is gone for good? No! Because the only ways to know if I’m cured are if my cancer recurs (not cured) or I’m in remission when I die of something else (cured). When it comes to episodic cancer, uncertainty is grand.
FACT THREE: Worrying today about recurrence tomorrow is a total waste of my time and energy. Trust me: I’ve tried expecting the best, the worst and everything in between. Recurrence is lousy when it happens, whatever mind games I play beforehand.
A mantra that helps me keep worries from sabotaging good times is this: “I don’t have a problem until I have a problem.” In other words — and this refrain works only if I always do the right things to get good care — I assume I’m fine unless an evaluation proves I have a problem. This doesn’t work for everyone, and sometimes it doesn’t work for me. That’s when I remind myself that I got through treatment before. As only people who’ve already walked the walk can know, I know I can do whatever it takes to get through cancer again.
Balancing on the edge of the coin has its advantages. Episodic cancer encourages me to know both the fragility and the hopes of life. And with this knowledge, I’m on a roll.
Wendy Harpham, MD, is a non-Hodgkin’s lymphoma survivor (who has experienced seven recurrences) and is the author of several books, including ??Happiness in a Storm. Visit her website, and connect with her blog, at www.wendyharpham.com.