“The writing is marvelous and the scholarship is incredible — but you aren’t prepared for the disarming humor, or the delicate dissection of the psyche that Jain achieves. I could not stop reading this book.”
– Siddhartha Mukherjee, author of Emperor of All Maladies, Pulitzer Prize Winner

“Malignant is a beneficent book, a tough gift for all of us. I–we–need this scholarly, angry, intimate, objective, smart, moving book that teaches us how to endure and even maybe thrive in the ‘rubble.'”
— Donna Haraway, author of Simians, Cyborgs, and Women

“Malignant is the most important book about cancer in decades. Lochlann Jain brilliantly compels us to look straight into its metastases and cultural malignancies. In cancer’s claws we find, not just the limits of existence, but also a poetics of resistance.”
— Jonathan Metzl MD, PhD, author of The Protest Psychosis

“I found myself entertained, informed, surprised and ultimately transformed by this wonderful narrative.”
— Abraham Verghese, author of Cutting for Stone

S. Lochlann Jain is Associate Professor in the Department of Anthropology at Stanford University and author of Injury: The Politics of Product Design and Safety Law in the United States.

Malignant

How Cancer Becomes Us

By S. Lochlann Jain

UNIVERSITY OF CALIFORNIA PRESS

Copyright © 2013 The Regents of the University of California
All rights reserved.
ISBN: 978-0-520-27656-7

Contents

Introduction: We Just Don’t Know It Yet, 1,
1. Living in Prognosis: The Firing Squad of Statistics, 27,
2. Poker Face: Gaming a Lifespan, 46,
3. Cancer Butch: Trip Up the Fast Lane, 67,
4. Lost Chance: Medical Mistakes, 88,
5. The Mortality Effect: The Future in Cancer Trials, 112,
6. Inconceivable: Where IVF Goes Bad, 128,
7. Can Sir: What Screening Doesn’t Do, 151,
8. Fallout: Minuets in the Key of Fear, 179,
9. Rubble: Bakelite Bodies, 202,
Conclusion: Shameless, 215,
Acknowledgments, 225,
Notes, 229,
Index, 283,

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.'” 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. 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.”

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.” 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 double helix. Patients might receive prognoses at a doctor’s visit or look them up in books and charts. Others may not want to know how they line up before the firing squad of statistics. One rarely knows if treatment has ended for good or if a next round with the “palliative” rather than the “cure” box checked on the medical treatment forms will be needed. A prognosis seems like a fact, if only a scrap of flotsom frenziedly bobbing in the rapids of cancer treatment. But its stunning specificity (“34.7%”) shields the bloodlessly vague platitude: in five years, you, yourself, will be either dead or alive. The prognosis purees the I-alive-you-dead person with the fundamental unknownness of cancer and gloops it into the general form of the aggregate. The individual cookie cut from the dough is both prognostic subject and cancer object.

Living in prognosis severs the idea of a timeline and all the usual ways we orient ourselves in time: age, generation, and stage in the assumed lifespan. If you are going to die at forty, shouldn’t you be able to get the senior discount at the movies when you’re thirty-five? Does the senior’s discount reward a long life, or proximity to death?

Sometimes comfort lies in data. Taking numbers at face value, prognosis offers mortality odds, odds that one can potentially beat. Other times, when data feel vacant, literature provides a different sort of clue about the mysteries of living outside of normal time. Data and narrative each have their place, though neither ever really assuages the stupefaction of living in prognosis.

VANQUISHED ODDS

At my first week-long cancer retreat, I gazed at the other seven participants. Lisa (all names changed), about my age, with a two-year-old daughter at home: breast cancer. Kai, from Montreal: leukemia. Sharon, from Ottawa, worked for Canada Health: breast cancer. Then there was Tina, a nurse: oral cancer. Alice, mother of a twelve-year-old, had ovarian cancer and was about to start her third course of treatment. Beth had received a high-dose bone marrow transplant a decade prior in Montreal and had been ill ever since. Kate, an English educator twenty-five years older than me, was diagnosed the same day as me but with metastatic disease.

I coped throughout the week by indulging in a compulsive, downright sick guessing game of “who’ll die first?” Unlike my father, who at weddings delights in predicting out loud how long a marriage will last, I told no one of my hunch—which, as it turned out, was right. It seemed as though the bearing out of my wretched little assessment made these women’s excruciating deaths more reasonable, if not fair. Rationalization offers one of the few explanatory tools we have to account for death.

Perhaps I can attribute, even justify, my own window of survival to the treatment, my vegetarian diet, my good constitution, the surgeon’s skill, or possibly even my kindly nature and goodwill. Many explanations and secret theories belie objective measurement. Some breast cancer survivors credited the Halsted radical mastectomy long after most surgeons abandoned the procedure in favor of less invasive surgeries. Who knows? Just because it was overall less likely to work than other treatments doesn’t mitigate the fact that it may have saved some who would have died with the alternative surgery.

We assume survival—until we don’t. You don’t really think about it until you are called into the position of survivorship (by age, illness, anxiety, prognosis), until you are asked in some way to inhabit the category, to live amid those who are not, in fact, surviving. I know the muted exhilaration of the survivor. Each morning that I wake up not dead or sick, I’m happy and miserable at the same time: Pleased to be waking up at all. Blissed out to have landed on the vitality side of that prognosis. Repentent about my good cheer as my mind wanders to the three people from my support group currently dying. It’s not quite that one’s own survivorship is contingent on others’ deaths. But the contemporary cancer discourse of survival against the odds seems to veer too far in the other direction, neglecting those in the category whose deaths have built those very odds.

The medical community identified the term cancer survivorship in the 1980s as a way to distinguish the medical needs of people who had undergone cancer treatment. Since then, the term has absorbed new social meanings. Cultural and personal investment in the Survivor runs deep, and on several occasions I have witnessed people in support groups discussing their dismay both at the term and at the implicit taboo against critique. As one person said, “It’s as if being against the survivor rhetoric means being against living.”

The dictionary reflects the uneasiness of these discussions. Survivor can mean, on the one hand, someone who has survived a dehumanizing and degrading experience of terror, or on the other, someone who outlives others. Whereas the first definition gestures toward survival of the kinds of histories that have led to various stripes of identity politics (based in race or gender, for example, in racist or misogynist cultures), the second overlapping definition reflects living beyond an event in which others die (the veteran of a war, the cancer survivor, the widowed survivor of her husband).

I initially resisted the moniker cancer survivor because I didn’t want an identity built on the backs of those people who didn’t survive. I thought it all seemed pretty arbitrary—after my diagnosis, my mom would say that she wished it was her, instead of me. But then the next year it was her as well. Survivor-style math doesn’t allow for substitution.

Once in the emergency room at Stanford Hospital the nurse said to me, “Oh, I’m a sister.” I couldn’t tell if she meant she was queer or if she had had cancer, but either way it was a powerful, not unwelcome, call to identify. Don’t get me wrong—I’d rather survive (usually). And a touchstone for commonalities can be good. It’s just that the form that contemporary survivorship takes in relation to statistics—survival against the odds—combined with enthusiasm for one’s own potential agency in cancer’s battles, hides the conditions of probabilistic language, and in so doing leads us away from an opportunity to think through other possibilities for identification. Maybe I’d prefer something like cancer survivor as opposed to cancer survivor. The distinction is perhaps ham-fisted, but I mean to indicate with the former category that people who have gone through certain of the hoops of cancer to some extent share an experience that has potentially identity transformative effects. The latter category transfers the emphasis away from the commonalities and toward the individual, particularly through a triumphant ideal of the human spirit. That part of the cancer survivor identity struck me the wrong way.

Physician Bernie Siegel bows to such restricted language in his Love, Medicine, and Miracles: Lessons Learned about Self-Healing from a Surgeon’s Experience with Exceptional Patients, in which he suggests that there is a right attitude needed to survive cancer. In portraying cancer survivorship as a moral calling, Siegel implies that dying results from a personal failure. Siegel-style literature offers another form of torture to people with cancer: Did my mind declare war on my body? Am I a cold, repressed person? (Okay, don’t answer that.) The huge and punishing self-help industry preys on fear and adds guilt to the mix. As one woman with metastatic colon cancer said on a retreat I attended, “Maybe I haven’t laughed enough.” She added, “But then I look around the room and some of you laugh a lot more than I do and you’re still here.” She died a year later, though she laughed plenty at the retreat.

Another version of attitude v. cancer can be seen in the ubiquitous language of battle. Self-avowed cancer survivor Kristine Chip echoes a common refrain: “I had a quote 40% chance for survival for 5 years and 25% for 10 years. Now, did I live by those statistics? No. Did I let them influence the way I battled the disease? No.” Chip instead turned inward: “With a positive attitude and hope, you can conquer anything.” Chip specifically does not battle other people who will die so that she may live. Rather, she configures her agency in relation to statistics about her disease.

The very possibility of surviving odds emerged relatively recently. Not coincidentally, the culture of the cancer survivor rose in tandem with the consolidation of cancer statistics and their disclosure to the patient through the last couple of decades. The term survivor itself, however, has had a longer life.

In 1624, John Donne wrote about the survivor in his masterpiece, Devotions upon Emergent Occasions. The chapter title of Meditation XVII (Roman numerals seem apt) slays me: “Now, this bell tolling softly for another, says to me: Thou must die.” He languidly, almost pleadingly, writes of the communal nature of survivorship:

Who casts not up his eye to the sun when it rises? but who takes off his eye from a comet when that breaks out? Who bends not his ear to any bell which upon any occasion rings? but who can remove it from that bell which is passing a piece of himself out of this world? No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less…. Any man’s death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls; it tolls for thee.

After Donne, survivor loses its communal reference, coming to describe not the individual reminded of his mortality by the death of another, but rather the one distinguished by his longevity. The survivor exists as temporally dislocated from the collective. The combination of Siegel-type notions of the exceptional patient and the ways in which prognoses have come to situate individual patients underpin and enable Chip’s notion of survivorship.

The noted biologist Stephen Jay Gould wrote something of a how to survive statistics guide after his diagnosis with abdominal mesothelioma. In “The Median Isn’t the Message,” Gould shows us that hope can be found in the “right skew” of a curve that describes his own gloomy odds in which half of those diagnosed will die within only eight months (fig. 2). The gradually declining curve to the right, though, indicates that some of those who survive the first eight months will live for years and even decades. As he points out, “There isn’t much room for the distribution’s lower (or left) half—it must be scrunched up between zero and eight months.”

Everyone hopes to be represented by that right side of the graph, which floats gradually back down and eventually correlates with those few who live out a normal lifespan; that is, they die of something else. Gould did indeed remain in that latter side of the graph for twenty years. Early-twentieth-century novelist Hilaire Belloc wrote that statistics offer a “victory of sterility and death.” In my estimation, that victory can be experienced in the plummeting feeling of the search for oneself in the graph. Or the victory might be one step removed; after all, the graph encourages this self-centered search for oneself in a way that Donne’s communalism would not brook.

This graphed representation could not differ more from another version of survivorship: the Holocaust memorial. Museums, web pages, documentaries, and Hollywood movies have all developed a unique material culture that aims to breathe historical life into those who underwent the brutalities and genocide. The familiar images of barbed wire; emaciated, bald bodies with loosely hanging striped uniforms; piles of corpses; bodies in mid-crumple after a shooting—these stand as markers of precisely what we must remember, the deaths and the specific vicious way in which those deaths occurred.

(Continues…)Excerpted from Malignant by S. Lochlann Jain. Copyright © 2013 The Regents of the University of California. Excerpted by permission of UNIVERSITY OF CALIFORNIA PRESS.
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