This is the 8th in an ongoing series of posts bringing a critical sociological and feminist lens to my own experiences with endometrial cancer. In this post I challenge conventional binary thinking that casts health and illness as fundamentally different states of being.
Three weeks ago marked my sixth and final chemotherapy treatment – at least for now. As might be expected, reactions of friends and acquaintances to this bit of news have been enthusiastic: “Congratulations. You made it!” “Hurray. Now you can take that trip to Switzerland / Morocco / New Zealand that you talked about last year.” “What a relief it will be to be back to normal. Let’s plan a celebration / get theater tickets / go out for a fancy dinner.” “So glad it’s over.” “Yay! You’re cured!”
My response has not been quite so positive. It’s wearisome, depressing and sometimes infuriating to clarify to friends, co-workers, and even medical personnel that despite the miracles of modern medicine, the end of chemotherapy is not the end of cancer. I feel burdened by having to decide – again and again — whether to smile humbly and say “thank you” or to tell the truth, which often devolves into an uncomfortable dialogue characterized by denial on the part of the well-wisher and escalating frustration and sorrow on my part.
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The truth is that my variant of endometrial cancer is not curable. The excellent medical team at the world renowned Dana Farber Cancer Center will keep me on a regime of immunotherapy (a regime with significant side effects and minimal evidence of meaningful efficacy for my specific cancer variant) for two years or until the treatment stops working. Depending upon when and where the cancer recurs, I’ll then be treated with drugs that have even nastier side-effects and less proven efficacy than my current regime. The goal, as I understand it, is to hold off progression of the disease for months or, if my cellular mutations align with available treatments, for a year or more in hope that better treatments will come through the research pipeline.
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“Don’t be so negative”, say the well-wishers. “I know someone who was diagnosed with terminal cancer twenty-five years ago and is still alive today, living their best lives.” Despite my own poor prognosis, I truly am happy for these fortunate folks. “But” I explain, “twenty-five years ago medical science did not include sophisticated genomic and molecular analyses that allowed doctors to differentiate among similar looking cancers.” Indeed, back in the pre-genomic medicine days, no one knew why some people survived and others didn’t. Often, the going theory was that the survivors simply were better fighters, more resilient, more optimistic, or more blessed by God / Jesus / [Name your favorite] Spiritual Entity.
A good friend told me that I don’t owe anyone an explanation. “Let them think whatever they want to think,” my friend said. “You don’t owe people anything.” She may be right, but for me – a sociologist by training and by inclination – that advice doesn’t resonate. The personal is always political: Chronically underfunded research into gynecological cancers (a.k.a. yukky below the belt “female problems”) has been further reduced by those who claim to want to “Make America Healthy Again” (that is, those who seek to reduce women’s access to reproductive healthcare, attack people for their gender identity and sexual orientation, vote to reduce support for Medicaid, and consider diversity, equity and inclusion to be dirty words). For as long as my energy holds out, I will be damn sure to say this aloud to anyone who will listen.
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The personal is not only political. It is also cultural.
In the two cultures that have shaped my life – American culture and Jewish culture – we embrace binaries: us / them, good / bad, black / white, healthy / sick. Indeed, the Biblical creation myth tells a compelling story of carving up chaos (tohu v’bohu) into named and manageable binary categories: night and day, land and water, male and female. Rationally, of course, we know that these are not true binaries. Twilight, dusk, dawn – give lie to the night / day binary. The enormous range of chromosomal, hormonal, and chosen gender markers give lie to the male / female binary. People with whom we interact everyday give lie to the black / white binary, even as white Christian nationalism expands its American power base, seeking to legislate or terrorize imagined binaries into political realities.
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And let’s face it, are any of us totally and completely healthy or totally and completely sick?
One of the ironies of cancer is that treatment often is experienced as more sickening than the disease itself (in my case, there were no painful symptoms prior to my diagnosis.) I suspect that this explains, at least in part, why friends and strangers congratulate me for finishing this round of chemotherapy. But more importantly, in the 21st century many cancers go into temporary remission (or in my case, hold at a steady state until recurrence). Cancer is neither an acute disease nor a classically chronic one. It’s intermittent, unpredictable; the individual is not cured, not healthy, yet may not be actively sick at a specific moment in time. We cancer patients (a term that makes me queasy) spend our lives under medical “surveillance” (another term that makes me queasy), sometimes forgetting the chaotic mutations constantly going on in our bodies at the cellular level until, at regular intervals, we have appointments for blood tests and scans. There’s even a special word for the feeling caused by this process: “scanxiety”.
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Tomorrow I go in for my first post-chemo CT scan. Will that test reinforce an imagined healthy / sick binary? Or will the results be “inconclusive”? I know that the best I can hope for is “no evidence of disease”, knowing that “evidence” is not static; that cancer may well be doing its thing in sub-microscopic hidey holes somewhere in my body. And so, dear friends and readers, I give you permission to pray for me, cheer for me, hope for me, send good energy waves my way, and donate to the Ovarian Cancer Research Alliance in my honor. But I beg of you, please refrain from congratulating me if, as is the best any of us mortals can hope for, the radiologist who reads the scan sees “no evidence of disease.”
I wish to thank my dear friend Debra Cash for helping turn my chaotic ideas into a coherent essay.