of people who die of breast cancer will die of metastatic cancer? Who suffers the effects of the recent court decision to disallow graphic warnings on cigarette packages? How are cost and benefit determined in screening debates? Who should pay for inevitable surgical errors? Who considers, and who suffers from, the unintended consequences of institutional blind spots? The questions framed in various expert and lay areas, and the forms that the answers take, provide clues about the values that underpin our understandings of cancer, just as crude oil oozing from a pipeline onto the Arctic snow discloses the dominant values of the society that laid the pipe. My book is not only about how the framings of cancer affect psychic, medical, and institutional experiences, but also about how understandings of cancer reflect back onto the cultures that have defined it.30
Astrologists and scientists alike derive meaning from the set of dividing cells and its namesake, the constellation in the zodiac. The configuration we dimly recognize as a crab, suspended between its brighter siblings Gemini and Leo, takes shape through a specific alignment of stars, some of which we see as they were hundreds of millions of years ago. Cancer’s earthy doppelganger, also, threatens to disintegrate with each shift in perspective.31 The pathology report, the prognoses, the scars, the data and graphs, the looks on parents’ faces, the shiny hospitals with their infusion rooms and IV drips, the marches and fundraising translate the uncertainty at the center of what we call cancer into a thing that we can call cancer. But just barely.
LAY YOUR BODY DOWN
After my first surgery, Dr. Slideshow wanted to see my new scar. He turned away as I changed into the hospital gown. With the clumsy gestures of my stripping and him turning, we joined a centuries-old pageant. One gown and one stethoscope-in-relation-to-gown—these rituals and costumes make the prodding, cutting, digging, and stitching correspond to an otherwise unthinkable etiquette.
I hold enormous respect for the expertise that doctors gain through their years of tough physical and intellectual training. No denigration of that skill comes with the observation that white coat and hospital gown divide those who define the bureaucratic and medical realm of illness from the one who necessarily, if perhaps not wholly, comes to be defined by it. Recognizing how that dynamic operates might be of service to everyone, since as doctors and/or as patients, we all play roles in this script.
Forms of cancer-knowledge tend to push each participant to identify with one side of the equation (objective, scientific, “neutral”) or the other (subjective, emotional, “biased”).32 As a patient, you can’t forget for an instant that the data do not fully describe your life. But researchers and scholars tend to frame the disease in the abstract, as if it could exist outside of the actual people who manifest it. Because of that propensity, it takes an effort to consciously remember—really remember—that people’s lives are more than just data, that actual people play critical roles in the very existence of the disease and how we understand it.
No matter how sympathetically told, medical history necessarily goes on to tell of the ultimate “triumph” of the treatments.33 In the 1960s, for example, hematologists began testing the effects of high and low doses of chemotherapy on children with leukemia. Yet the temporal horizon of the children stretches not over decades, but over months, days, minutes. Their stories do not move on to the next, better version of chemotherapy. Some of these children abide a horrible illness and die; some live with continued health issues, missing school, losing and gaining friends. Whatever the details, cancer creates for these children a new kind of story of their lives, and it’s not an abstracted story of medical progress.
A pairing of articles can further demonstrate the stakes in this clash between the modes of thinking ascribed to the patient (subjective etc.) and to the doctor (objective etc.). Rose Kushner, a well-known journalist in the 1970s, worked to bring cancer out of the closet at a time when many people were still not told of their diagnosis, let alone expected to take an active role in treatment decisions. After her cancer recurrence, Kushner wrote about the then-new treatment of chemotherapy in an article titled “Is Aggressive Adjuvant Chemotherapy the Radical Halsted of the ’80s?” For the reasons she cites, she opted against taking the chemotherapy.34
Like many cancer patients, Kushner acquired an encyclopedic knowledge of the scientific research on her disease. A procedure of her time, referred to simply as “the Halsted,” consisted of a ghastly mastectomy that removed muscle, tissue, and sometimes bone in order to clear huge margins around the tumor, based on the surgeon William Halsted’s theory that cancer spreads outward from the initial tumor. Shortly before Kushner wrote her article, surgeons abandoned the radical mastectomy after nearly a century of use; trials found it no more likely to stop cancer from recurring than excision of the tumor alone followed by radiation. Thus, Kushner highlights a key point: people with cancer, and especially women, have suffered severe consequences of treatments later found to be at best ineffective, and at worst, profoundly injurious.
In 2007, long after Kushner’s death from metastatic breast cancer, the noted cancer historian and physician Barron Lerner wrote his own commentary on her piece as part of his larger research into the illnesses of celebrities.35 Although in a 2003 history of breast cancer he, too, acknowledged the gender imbalance in cancer treatments,36 Lerner’s reading of Kushner’s article makes clear an irony. Because she had to lay her body on the altar of medical expertise, he suggests, Kushner could not help but be biased in her analysis of the debates about chemotherapy. “Rose Kushner’s award-winning article,” he concludes, “. . . provides a cautionary tale about individuals who function simultaneously as patients and spokespeople.”37 Astonishingly, he thinks she had too much at stake—not because she was a journalist, but because she was a patient—to have truly understood the data.
Kushner observed that the trials for chemotherapy did not include categories for stage and age at diagnosis, thus impairing the ability of oncologists to determine the efficacy of the treatment for specific individuals. Early trial results demonstrated an improved survival rate of only 3 percent, and Kushner graphically listed side-effects of chemotherapy that many physicians discounted: “baldness, nausea and vomiting, diarrhea, clogged veins, financial problems, broken marriages, disturbed children, loss of libido, loss of self-esteem, and [impaired] body image.”38 Despite billions of dollars invested in research and hundreds of trials showing fractional differences in survival rates, the particular cocktail of drugs that Kushner writes about has not significantly changed since its introduction in the 1970s. Neither has the dim likelihood of it working. Indeed, the debate continues—Is it ethical to give thousands of people such a dangerous treatment for the potential benefit of a few?—though chemotherapy has settled into such a standard of care that to refuse it seems like an irrational death wish.
The journalist and patient saw cancer and its medical management as enmeshed in institutional relationships with uncertain pay-offs. On the patient side, chemotherapy offers more than a treatment. A life filled with boring and painful details includes wondering if the phlebotomist will be gentle; hearing the nurse trying to insert the IV needle say, “If I can’t get it in three tries, I’ll find someone else”; imposing on friends and family for a ride home from the hospital. Whether chemotherapy would have saved Kushner’s life cannot be known. The point of her article is clear, however: for some people, the math of risk and chance requires different kinds of accounting in conditions of such deep uncertainty and hazy research results.
Debates about efficacy aside, in suggesting that Kushner should have done chemotherapy Lerner misses an opportunity to understand the inescapably physical experience of a human undergoing an invasive procedure. In his very inability to grasp this, his article underscores how medical history so often elides the stories and experiences created by, and necessary for, the science. He can do this through a logic that is central to the reality of cancer treatments to this day: chemotherapy may or may not work for your future survival if you take it, but it definitely won’t work if you don’t take it.
The
