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. Short of that, my internal scholar has heavily pressured me to box up my findings and observations to provide, if not The Solution, at least An Explanation. But if the plot has a pudding, it molds to the disconnects, the cognitive dissonances, that make the disease, let alone a cure, so elusive. The chapters that follow examine how a culture that has relished such dazzling success in every conceivable arena has twisted one of its staunchest failures into an economic triumph. The intractable foil to American achievement, cancer hands us, on a silver platter and ready for dissection, our sacrifice to the American Dream.
CHAPTER 1
Living in Prognosis
The Firing Squad of Statistics
After receiving my pathology report and full diagnosis, I found a set of prognostic charts in my burgeoning cancer library. Each listed the survival chances for a variety of subtypes of cancer. The left column specified tumor size (< 1 cm, 2–3 cm, 3–5 cm, > 5 cm), and the horizontal lined up the number of positive lymph nodes. Each box in the chart contained a number, such that the reader could correlate the characteristics of his cancer to the likelihood that he would be around in five, ten, fifteen, and twenty years. Ironically, no matter how hard I stared at it, the table could only mask the very thing I obsessively wanted it to disclose: Would I be in that percentage of people who had a recurrence just two years after treatment or in the 20 percent who would survive for the next twenty?
At my next appointment, I asked Dr. Slideshow the somewhat naive, somewhat urgent question, “What does it mean?” The doctor responded in a way that was both helpful and not helpful, depending on the moment that I recall it: “Exactly what it says.” Banal as a winter day or the color of the ceiling, survival statistics offer a smidgeon of information, but not much to cuddle with.
How could something be at once so transparent (you will live or die) and so pig-headedly confusing (will you live or die)? The prognostic skullduggery reminded me of a short story by Maurice Blanchot, a French philosopher whose life spanned nearly the entire twentieth century. World War II offers the backdrop for “The Instant of My Death,” in which a group of Nazi soldiers remove the French protagonist from his chateau and place him before a firing squad. At just this moment, a distraction in the bushes demands the attention of the German lieutenant. The soldiers disband and scatter, while the main character lives on within an impossible ambivalence. Blanchot writes: “There remained . . . the feeling of lightness that I would not know how to translate. . . . I imagine that this unanalyzable feeling changed what there remained for him of his existence. As if the death outside of him could only henceforth collide with the death in him. ‘I am alive. No, you are dead.’”1 In the instant of his death, or “The Instant of My Death,” two deaths implode, one inside, “I am alive,” and one outside, “No, you are dead.” In the meantime, the integration of the manifestly unnarratable event of one’s own death (no linguistic philosopher would accept the claim “I am dead”) preoccupies his (the soldier’s? Blanchot’s?) posthumous life.
The prognosis epitomizes the haunting character of death that transpired in this eponymous nonexecution.2 An attorney friend of mine, Mary Dunlap, who died in 2003, wrote a book-length manuscript while living with cancer, “Eureka! Everything I Know about Cancer I Learned from My Dog.” Ever the optimist, Mary found hope in her dismal prognosis for pancreatic cancer: a 5 percent survival chance wasn’t nothing. In the last chapter of her book, she handwrites: “On Monday, Maureen [her partner] and I were confronted with the news—predictable to many, but surprising to us—that the cancer discovered in my pancreas has moved into my liver. Today I am an asymptomatic person with an almost invariably deadly cancer.”3
When Mary found that her cancer had spread (had, indeed, been spreading), her health status retroactively shifted. I am alive. No, you are. . . . In one swift motion, the cancer prognosis detonates time, which scatters like so many glass shards.
Having harbored cancer in one’s body all that time before diagnosis, when one thought one was quite well, thank you, mystifies both past and future. One young blogger, who identified herself only as “cancerbaby,” wrote as she was dying of ovarian cancer: “The vernacular drones constantly. And for those who speak it, the talk is loose, as it should be. Rendered mute, you can only listen to the din. It swirls around you, looping endlessly in patterns and figures you can’t quite recognize—a language you once studied, but cannot speak or master.”4 Many, many people I have spoken to who have gone through cancer diagnosis echo this sentiment.
Unable to specify with certainty the behavior of any one particular cancer, oncology relies instead on statistics. Cancer and prognosis form oncology’s
