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 difference in perspective made evident in the Kushner-Lerner pairing emerges as a dynamic in thinking about which kinds of evidence gain stature: the interpretation of one who has much at stake by virtue of literally embodying the disease, or the understanding of someone for whom a tightly specified set of research data offers no more than a professional tool. Institutions support the separation and even mutual inscrutability of these forms of knowledge.39 In the hospital, individual bodies take up their roles in a system buoyed by a threat even in its aim to cure: either undergoing or not undergoing what medicine has to offer can hurt you. In the hospital, you know exactly where you stand in relation to those roles: which doors you can use; how your body should be clothed; who can flirt with whom; and which people will be referred to in the third person, even when they are lying right there on the bed. The very design of the place demands certain behaviors and supports certain hierarchies.
Or so I was thinking as I drove down Alpine Road adjacent to Stanford University, where some of the richest, most educated cyclists in the United States find that the narrow cycling path drops them into the middle of a car-infested junction. No matter how high-tech the cars, motorcycles, or racing bicycles in the intersection, nor how brainy or well connected the riders and drivers, they inhabit a system of crisscrossing roads that limits communication among the participants. Whether propped on a leather Brooks bike saddle or swaddled in the leather bucket seat of a Bugatti, communication takes place through honks, swerves, fingers, waves, blinking lights, and physical impact. Which of these primitive actions you can access depends not on your wealth and education, but on the means by which you entered the intersection.
The same word comes to mind when I observe a cyclist dumped in the middle of an intersection fearing the approaching driver talking on his phone as when I think of a patient dreading being treated like a cadaver while under anesthesia: powerless.
COGNITIVE DISSONANCE
The power dynamic resulting from the separation and institutionalization of knowledge in these ways devalues the knowledge that people with cancer derive from undergoing treatment. Perhaps as a result, some survivors respond unfavorably to analyses of cancer by individuals who are presumed not to have experienced the disease themselves. I’ve learned this when giving talks and not coming out as someone who has gone through surgery, chemotherapy, and radiation for fear that my personal experience would discredit my views, make me seem less “objective.” In this trade-off, some survivors then think that I’m an outsider.
Bristly survivors make a valid point. For how could you imagine the scene of the radiation room? The frail gown that had surely covered someone for whom this very treatment hadn’t worked now inelegantly smothers your unease about the dose the machine is emitting and strains to catch the shiver that threatens to displace the crimson rays from the