Malignant. S. Lochlann Jain
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Having been raised as a reticent Canadian, I’m already tempted to recant the nonfictional status of this book and ask you to read it as fiction. Long after my diagnosis, even still, I tell as few people as possible that I’m a so-called survivor. It would be easier to play the role of a detached guide.
But the world outside wedges open the door and makes it difficult to stay closeted. At a party I attended last June, the head of our organization for women diagnosed under the age of forty with cancer read the names of those in our community who had died in the last few years. The reading of the seventeen names felt more like a memorial after a bombing than the usual way of understanding death as an individual, personal tragedy. Yet we did undergo a sort of massacre as, every month, we read email after email about those who suddenly landed in the hospital as cancer returned and pinballed from one vital organ to another, and as we attended funeral after funeral. That contradiction—the exaltation of community and connection against the grief that emerges at so many cancer events—still feels like a good solid kick in the spleen.
For this reason, we need to delve into cancer discussions that we’d rather hide from. And so, after looking long and hard from the canoe for seven years, I’ve leapt into the white water. I invite my readers to explore with me the very things we (read, a slightly lonely “I”) most want to shy away from.
The stains on my passport do not provide me with a global or objective view of the cancer machine. However, they do reveal the route I’ve taken through a titanic subject. Each chapter in this book began from a curl of feeling—like a lock of hair pinned to a voodoo doll. I worked my way backward from the discomfort to decipher the structures that organized it. Walking down the hall for chemotherapy at the hospital, I tried to pass as a doctor. Anyone could tell that the slumped-over sick people crowded in the waiting room were the real losers. I noticed people, pinioned between experts’ uncertainty and the social pressure to be optimistic, resorting to small forms of resistance. Although I was still a citizen of the first world, I fell out of sync with how my generation moved through their lives.
A more pernicious companion than my own skepticism joined me: the constant thought that things could have been otherwise. Anyone with invasive cancer might have had a higher chance of survival had we been diagnosed sooner, or so claim the ubiquitous ads for early detection. Over the decades, early-detection awareness has seeped into the public’s often half-shaped ideas of cancer as well. One of my retreat friends with terminal ovarian cancer learned to respond to the constant, distressed inquiry, “But didn’t you have a Pap smear?” Her community wondered whether her imminent death wasn’t her own fault, whether their own medical obedience could save them from her fate. Discussing how she took that question as a nearly physical attack, Alice fretted, “A Pap smear has nothing to do with ovarian cancer.” The fact that a Pap smear would have done nothing for her doesn’t quell the search for an alternative world in which she might had survived, just as Lerner insists that chemotherapy might have worked for Kushner.
Historians have a word for the surrogate world that would have resulted from a mere tweak in the course of events, such as an earlier diagnosis or no exposure to a carcinogen at all. The “counterfactual” offers a window into imagined, possible worlds. Counterfactual historians fill tomes with these alternative histories: Booth’s pistol misfires and President Lincoln lives on, or Adolf Hitler dies at birth. This little nook of possibility for a different life can become a living, breathing escort in the cancer world. It takes up residence right at the base of your throat. For example: everyone knows that we are all exposed to a torrent of carcinogens every day, yet no one can tell you which, if any, caused a particular cancer. One “races for the cure” while knowing that the production of the race T-shirts required the use of carcinogens. There may be a cure someday, and you may live to see it, but only if you can work out the right course of action—a certain drug, trial, diet. Someone might be held accountable for a misdiagnosis or an exposure, and for that, you might yet win a compensatory award from a court of law. But in the grand scheme of things, cancer is no individual’s fault.
Cognitive dissonance—or the mental pressure created by opposing truths held in tandem—happens precisely when one tries to hold together the factual and the might-well-have-been-or-still-be-otherwise-if-only counterfactual. One can’t live in a world in which every detail could have been, or could yet be, otherwise. One can’t actually vote while psychically living in a world in which Lincoln hadn’t been shot and the Ku Klux Klan had not murdered generations of African Americans. One can’t pick up the painkillers or apply for Social Security disability insurance when lost in a world in which one’s lover hadn’t been diagnosed.
Cognitive dissonance, a defining feature of cancer, can’t be resolved, only spun out and examined. No one knows what causes any individual cancer, although we have suspicions and part-data, and certainly we could be doing much more to address the National Cancer Institute’s claim that two-thirds of cancers are caused by environmental factors.40 Accepting the contradictions of cognitive dissonance comes with a certain optimism—you may survive!—but it also carries the potential for unmooring. The loopy feeling brought on by a cancer diagnosis has many causes. Somewhere, nowhere, and everywhere, cancer hides in plain sight. We don’t want to admit that it runs through so many of our institutions and holds together our ways of life. Who can blame us?
A friend and colleague of mine, Derek Simons, writes about intersections—real intersections with traffic lights and painted lines. At any moment in an intersection, steel and rubber traveling at high velocity can come into conflict with delicate flesh. Simons examines the ways in which physiological, technical, aesthetic, and political vectors coincide with the material conditions—the concrete, the asphalt, the speeding projectiles—that both necessitate and obviate these injurious collisions. He refers to the dissonance between the taken-for-granted quiddity of road violence and its savage consequences as an “elegiac politics.”41
The dissonance between the total social fact of cancer and the ugliness of the suffering it causes offers an opportunity for an elegiac politics. The suffering ultimately needs to be okay not because it is fine, but because it happens and thus needs to be acknowledged. I want to usher cancer and its identities out of the closet and into a space not of comfort, or righteous anger, but of mourning, a space where the material humanity of suffering and death informs communicative and collective action.
ON STEROIDS
After my treatment, as I distracted myself with afternoon TV and wondered if my career lay in ruins, the absolute last thing I wanted to do was write a book about cancer. I wanted to move on. But the terms indolent and relentless that doctors use to describe cancer also depict the treatment hangover. Seven years later, I still can’t eat curry or drink rooibos tea—let alone watch afternoon TV—without feeling that wave of nausea. I spend thousands of hours and dollars each year on cancer-related issues. And it could have been much, much worse. The scholar’s antidote to confusion lies in research, and my study took on an insatiable quality.
First, I read every history I could find. I read about early cancer treatments. James S. Olson describes the women who had access to the latest, most aggressive breast cancer treatments of their age as “a sisterhood of guinea pigs.”42 Their treatments involved the removal of the adrenal and pituitary glands, the cracking open of the sternum to remove the internal mammary chain, cauterization with hot irons, and the removal of ribs, collarbones,