Malignant. S. Lochlann Jain
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Living in prognosis severs the idea of a timeline and all the usual ways we orient ourselves in time: age, generation, and stage in the assumed lifespan. If you are going to die at forty, shouldn’t you be able to get the senior discount at the movies when you’re thirty-five? Does the senior’s discount reward a long life, or proximity to death?
Sometimes comfort lies in data. Taking numbers at face value, prognosis offers mortality odds, odds that one can potentially beat. Other times, when data feel vacant, literature provides a different sort of clue about the mysteries of living outside of normal time. Data and narrative each have their place, though neither ever really assuages the stupefaction of living in prognosis.
VANQUISHED ODDS
At my first week-long cancer retreat, I gazed at the other seven participants. Lisa (all names changed), about my age, with a two-year-old daughter at home: breast cancer. Kai, from Montreal: leukemia. Sharon, from Ottawa, worked for Canada Health: breast cancer. Then there was Tina, a nurse: oral cancer. Alice, mother of a twelve-year-old, had ovarian cancer and was about to start her third course of treatment. Beth had received a high-dose bone marrow transplant a decade prior in Montreal and had been ill ever since. Kate, an English educator twenty-five years older than me, was diagnosed the same day as me but with metastatic disease.
I coped throughout the week by indulging in a compulsive, downright sick guessing game of “who’ll die first?” Unlike my father, who at weddings delights in predicting out loud how long a marriage will last, I told no one of my hunch—which, as it turned out, was right. It seemed as though the bearing out of my wretched little assessment made these women’s excruciating deaths more reasonable, if not fair. Rationalization offers one of the few explanatory tools we have to account for death.
Perhaps I can attribute, even justify, my own window of survival to the treatment, my vegetarian diet, my good constitution, the surgeon’s skill, or possibly even my kindly nature and goodwill. Many explanations and secret theories belie objective measurement. Some breast cancer survivors credited the Halsted radical mastectomy long after most surgeons abandoned the procedure in favor of less invasive surgeries. Who knows? Just because it was overall less likely to work than other treatments doesn’t mitigate the fact that it may have saved some who would have died with the alternative surgery.
We assume survival—until we don’t. You don’t really think about it until you are called into the position of survivorship (by age, illness, anxiety, prognosis), until you are asked in some way to inhabit the category, to live amid those who are not, in fact, surviving. I know the muted exhilaration of the survivor. Each morning that I wake up not dead or sick, I’m happy and miserable at the same time: Pleased to be waking up at all. Blissed out to have landed on the vitality side of that prognosis. Repentent about my good cheer as my mind wanders to the three people from my support group currently dying. It’s not quite that one’s own survivorship is contingent on others’ deaths. But the contemporary cancer discourse of survival against the odds seems to veer too far in the other direction, neglecting those in the category whose deaths have built those very odds.
The medical community identified the term cancer survivorship in the 1980s as a way to distinguish the medical needs of people who had undergone cancer treatment.6 Since then, the term has absorbed new social meanings. Cultural and personal investment in the Survivor runs deep, and on several occasions I have witnessed people in support groups discussing their dismay both at the term and at the implicit taboo against critique. As one person said, “It’s as if being against the survivor rhetoric means being against living.”
The dictionary reflects the uneasiness of these discussions. Survivor can mean, on the one hand, someone who has survived a dehumanizing and degrading experience of terror, or on the other, someone who outlives others. Whereas the first definition gestures toward survival of the kinds of histories that have led to various stripes of identity politics (based in race or gender, for example, in racist or misogynist cultures), the second overlapping definition reflects living beyond an event in which others die (the veteran of a war, the cancer survivor, the widowed survivor of her husband).
I initially resisted the moniker cancer survivor because I didn’t want an identity built on the backs of those people who didn’t survive.7 I thought it all seemed pretty arbitrary—after my diagnosis, my mom would say that she wished it was her, instead of me. But then the next year it was her as well. Survivor-style math doesn’t allow for substitution.
Once in the emergency room at Stanford Hospital the nurse said to me, “Oh, I’m a sister.” I couldn’t tell if she meant she was queer or if she had had cancer, but either way it was a powerful, not unwelcome, call to identify. Don’t get me wrong—I’d rather survive (usually). And a touchstone for commonalities can be good. It’s just that the form that contemporary survivorship takes in relation to statistics—survival against the odds—combined with enthusiasm for one’s own potential agency in cancer’s battles, hides the conditions of probabilistic language, and in so doing leads us away from an opportunity to think through other possibilities for identification. Maybe I’d prefer something like cancer survivor as opposed to cancer survivor. The distinction is perhaps ham-fisted, but I mean to indicate with the former category that people who have gone through certain of the hoops of cancer to some extent share an experience that has potentially identity transformative effects. The latter category transfers the emphasis away from the commonalities and toward the individual, particularly through a triumphant ideal of the human spirit. That part of the cancer survivor identity struck me the wrong way.
Physician Bernie Siegel bows to such restricted language in his Love, Medicine, and Miracles: Lessons Learned about Self-Healing from a Surgeon’s Experience with Exceptional Patients, in which he suggests that there is a right attitude needed to survive cancer.8 In portraying cancer survivorship as a moral calling, Siegel implies that dying results from a personal failure. Siegel-style literature offers another form of torture to people with cancer: Did my mind declare war on my body? Am I a cold, repressed person? (Okay, don’t answer that.) The huge and punishing self-help industry preys on fear and adds guilt to the mix. As one woman with metastatic colon cancer said on a retreat I attended, “Maybe I haven’t laughed enough.” She added, “But then I look around the room and some of you laugh a lot more than I do and you’re still here.” She died a year later, though she laughed plenty at the retreat.
Another version of attitude v. cancer can be seen in the ubiquitous language of battle. Self-avowed cancer survivor Kristine Chip echoes a common refrain: “I had a quote 40% chance for survival for 5 years and 25% for 10 years. Now, did I live by those statistics? No. Did I let them influence the way I battled the disease? No.” Chip instead turned inward: “With a positive attitude and hope, you can conquer anything.”9 Chip specifically does not battle other people who will die so that she may live. Rather, she configures her agency in relation to statistics about her disease.
The very possibility of surviving odds emerged relatively recently. Not coincidentally, the culture of the cancer survivor rose in tandem with the consolidation of cancer statistics and their disclosure to the patient through the last couple of decades.10 The term survivor itself, however, has had a longer life.
In 1624, John Donne wrote about the survivor in