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, and shoulders—in some cases following the discovery of tumors less than a centimeter in diameter. General anesthesia had barely been developed, with doctors and patients alike becoming addicted to the opiate painkillers. Cancer patients—part experimental subjects, since they were dying anyway, and part people desperate enough to try anything—were given massive doses of radiation and injections of radioactive elements to see what effect these might have.43
Progress, I found, isn’t at all clear-cut. Cancer patients were sometimes caught up in larger professional turf wars, such as that leading to the development of massive radiation labs. While difficult to discern in the present, one can see from the history that far from a lucid teleology of discovery, science is a cultural project that takes place within political and ethical infrastructures.
When I couldn’t fully locate cancer in historical study, I expanded my search. I attended oncology conferences all over the country. I also reviewed hundreds of trial reports to understand the current research, who funds it, how it fits within a history of oncology research, how it is interpreted and communicated, and, just as important, what is not being done. I also craved other kinds of first-person accounts.
My research took me to an archive in rural Maine where I pored over marine biologist Rachel Carson’s tiny cursive. Written as she was dying of cancer, her letters to a close friend describe her fear that her disease would discredit her research on the environmental causes of cancer and that her work would be dismissed as advocacy rather than studied as scientific research. I drove out to Carson’s oceanfront property and snuck down her driveway to see where she had written her bestsellers, The Sea around Us and Silent Spring. I also went to Harvard to forage through the letters and studies that Rose Kushner collected in the 1970s. I wanted to know how other people had done it—how they understood cancer, how they lived and died with it.44
I amassed memoirs and graphic novels; plays and art; patient pamphlets and public health websites; histories of cancer advocacy, the insurance industry, medicine, and allied professions. I scrutinized the story of how the radiation research carried out in Marie Curie’s tiny lab and resulting in her death progressed into contemporary treatments. I studied the medical, legal, and sociological literature on medical errors, how physicians, hospitals, and insurers handle them and what recourse patients have had in such cases. I also examined other diseases, and sought to fit cancer within a broader context of how medical anthropologists understand disease. I was at a buffet in Vegas: ravenous, stuffed, and empty all at the same time, somehow still unsatisfied.
Several experiences, both during and after treatment, helped with that feeling somewhat—at least they helped me to accept the raggedyness of the cancer I was finding in these places. I attended six weeklong retreats, as well as several shorter ones, and support group meetings. I listened as people tried to pick up the shards and fit them back into life stories. I became an unwilling funeral junkie. I swam, ostensibly for “women with cancer,” though I couldn’t get up the nerve to ask anyone to sponsor me, so I just paid the fee and did my laps. I still have the bag: I swam a mile for women with cancer, as if all those “women with cancer” suddenly turned into charity cases who need a mile of splashy (and not in a good way) front crawl.
I wanted to believe I could cobble together an adequate treatment if I just looked hard enough.