Nearly half of all Americans will be diagnosed with an invasive cancer—an all-too ordinary aspect of daily life. Through a powerful combination of cultural analysis and memoir, this stunningly original book explores why cancer remains so confounding, despite the billions of dollars spent in the search for a cure. Amidst furious debates over its causes and treatments, scientists generate reams of data—information that ultimately obscures as much as it clarifies. Award-winning anthropologist S. Lochlann Jain deftly unscrambles the high stakes of the resulting confusion. Expertly reading across a range of material that includes history, oncology, law, economics, and literature, Jain explains how a national culture that simultaneously aims to deny, profit from, and cure cancer entraps us in a state of paradox—one that makes the world of cancer virtually impossible to navigate for doctors, patients, caretakers, and policy makers alike. This chronicle, burning with urgency and substance leavened with brio and wit, offers a lucid guide to understanding and navigating the quicksand of uncertainty at the heart of cancer. Malignant vitally shifts the terms of an epic battle we have been losing for decades: the war on cancer.
Malignant How Cancer Becomes Us
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 liklihood 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 Blanchot, the French protagnonist, 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 ambivilance. 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.
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 in my support group 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). A touchstone for commonalities can be good. It's just that the form that contemporary survivorship takes in relation to statistics-surivival 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 echos 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 bells 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. 10). 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 Hillaire 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. 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.
The last few Jewish survivors have been ascribed the role of bearing witness to the Nazi devastation. Their tattoos and their children-fleshy repositories of that history-haul the burden of ensuring that history "never again" repeats itself. At the Holocaust Museum in Washington, D.C., observers are ushered strictly through the displays and one can't shy away from much. You arrive on the second floor to a pile of the thin black and brown midcentury shoes taken from people before they entered the gas chambers. Hundreds? Thousands? At once universal-anyone could have worn them-and also specific, each bears the particular moldings of the foot upon which it was worn.
Each single, anonymous, stiffened shoe tossed into the haphazard pile recalls the body and life that inhabited it. One shoe, thin at the heel, must have rubbed a callus; another, irreparably worn through, would have let the frozen dirt cut directly into the sole of its owner. The sheer height of the pile, emphatically not a bell curve, raises a sense of sickening disbelief.
The dead bodies depicted as data in Gould's graph orient mortality, too, though shorn of fleshy references. But the stories of those who died before or after the eight-month median-those in some way described by the graph-dissipate into the universal, timeless curve. The stories lent to the prognosis will come to be inhabited by other people-others who will wear those stories in their own ways, leave their own imprints. The search for oneself in this chart will always end in disappointment, for numbers are not shoes. A number will not mold to your arches; it will not record the shape of your life.
The graph abstracts the lives it represents, painting Gould as a victor against the odds rather than as one who literally vanquished those who landed to his left. In reading the graph, we can all hope that we might find ourselves on the right side of the graph, even though we know this is logically impossible. Yet justifying one's own life in the numeric death of the collective makes a dangerous bedrock for hope. Fickle adulterers, numbers make love with the generations who move through them. These data have no allegiance.
Statistics render another sort of violence by abstraction. Since the nineteenth century, Gould's disease has been known to be virtually always caused by asbestos exposure; according to historians, the disease exists only because of a massive cover-up by the asbestos industry. In different circumstances, the disease might easily have never existed, which would have led to a different curve entirely (a flat one). The spread of the disease was enabled, arguably, by the impersonality of aggregates-it is as if a gun was shot into a crowd, and fifty years later someone from that crowd keeled over and died. Given this cloak of anonymity (who was it who had the gun all that time ago?), a would-be assassin might well be more likely to shoot.
Gould's graph offers a seemingly objective view of the natural course of a cancer, rather than a glimpse into the politics of diagnosis-a politics that could easily fill a museum in the nation's capital. Ovarian cancer, for example, is known as a particularly aggressive form of cancer because women often die relatively soon after diagnosis. But like most cancers, life chances have to do with how far the cancer has advanced at diagnosis, and so the label aggressive masks the fact that patients and doctors ignored subtle symptoms until the cancer advanced to a stage at which it was no longer treatable. In other words, skipping over the causes of cancer gives it an apolitical mystique. Statistical aggregations provide a logic through which bodies become interchangeable numbers for which nothing need be felt, neither guilt, nor pleasure, nor horror. They enable prediction.
Donne's bell can neither notice nor toll for a statistic. Donne can't rationalize survivorship. Gould aims to comfort us with the possibility that in the coin of life in prognosis, we could each flip tails, even if some of those in a group of one hundred will invariably stare at the nickeled eyes of Thomas Jefferson. The Holocaust shoe project refuses statistical logic altogether; it's not about the six million who died, but about each one of those people who died.
Built of the dead-people we've never met nor could meet-survival prognoses contain homogeneous units with only one variable: alive or dead. These Frankenstein numbers do more than scare each of us. They become something sinister: they feed on our friends', acquaintances', and enemies' deaths, and they will feed one day on each of our deaths, just as they feed now on our lives. The statistics that offer the promise of beating the odds also evacuate the politics of prognoses.
Stand Up and Be Counted
After my treatment, I went to the hospital to see if I carry a cancer gene. The genetic counselor congratulated me on my negative result; I had won the genetic roulette and could avoid a horrid conversation with my offspring about what I had done to them. But a strange chat still ensued. The genetic counselor told me she was pretty certain I am a carrier of something, they just don't know what. She then showed me a chart that detailed my two sisters' patterns of cancer risk, which increased a couple of percent each year until the chart ended when each turned seventy-nine. How weird to see my little sisters' lives as a bar chart on the desk of a genetic counselor who knows nothing, absolutely nothing, else about them. I tried to picture my younger sister at seventy-nine. Would she still live in Vancouver? Would I get to see her? Would she still be my little sister? If I died, would she still be my sister? Then I chided myself for my narcissism.
My other sister, younger still, has an even higher risk for cancer. I couldn't get my head around it until I realized that it is all about time: the older sister has lived cancer-free for eight extra years, and so has weighed in on one side of the calculated risk, while the younger sister has to live through those still risky years. Irony ensued when my oncologist told me that even at age 110 I will have a higher risk for cancer than the "general population." Even my most doddering imagined future carries a threat.
In projecting a misleading solidity, the numbers don't count only what's already out there. They become a basis of evidence for arguments about cancer by virtue of the preset categories set for data collection. Numbers can seem equivalent and then tradable. Before you know it, you can exchange lives for other things, especially money, forgetting that the numbers once represented real people, with real communities and real histories and complex genealogies. Taking an objective count can be as misleading as it is illuminating.
I don't particularly want to join the head-counting tribe, but since numbers so often define this disease, it's worth examining them.
As the numbers stand now, one in two American men, and one in three American women, will be diagnosed with an invasive form of cancer during their lifetimes. Each day, over 1,500 Americans die of cancer, and a quarter of all Americans will eventually die from this disease. While more men will ultimately develop cancer, under the age of 39, women are significantly more likley to develop invasive cancers. Cancer has been the leading cause of death for Americans under 85 since 2001, and is the largest killer of women aged 34-70 and of men aged 60-79. The biggest cancer killer is Leukemia is the biggest disease killer for men under 40, after 40 it's lung and bronchus cancers; breast cancer is the main killer, period, of women aged 20-59.
Currently, more than twelve million cancer survivors live in the United States. Overall, cancer death rates are declining: between 2004 and 2008, death rates decreased 1.3 percent per year. Some people consider the falling death rate the result of decreasing smoking rates, others attribute it to the success of early detection, and still others consider the decline meaningless given its minuscule size and the wide spread of sundry diseases it covers.
Different cancer registries use different categories to collect data, including the site at which the cancer first presents; stage at diagnosis; the patient's age, race, and education; and the geographic location of treatment. The American Cancer Society estimates absolute numbers of cancer deaths each year as follows: lung and bronchus: 160,340 (with a median age at death of 72); colon: 51,690 (median age, 74); breast: 39,510 (female), 410 (male); prostate 28,170. Cancer incidence rates, as opposed to death rates, offer quite a different lens. For example, the lung and bronchus cancer incidence rate, with 226,160 diagnoses annually, is about 41 percent higher than the death rate, while there are nearly three times the number of colon cancer diagnoses (143,460) than deaths each year. Breast cancer incidence is about six times the annual death rate for both men (with 2,190 diagnoses) and women (226,870); the prostate cancer incidence rate (241,740 diagnoses) is nearly ten times the annual death rate. About 360 men a year die of testicular cancer, with a median age of forty-four. Over two million Americans a year are diagnosed with nonmelanoma skin cancer, a disease with fewer than a thousand deaths annually; meanwhile, the 76,250 cases of melanoma each year correlate to about 9,180 deaths a year.
Although the numbers vary from year to year, certain trends emerge. For example, testicular cancer incidence rates have increased by at least 75 percent since the 1975 (although death rates have decreased to less than a third), and over the same timespan rates of brain cancers and central nervous system cancers have doubled for those aged 65 and over. Mortality rates for children under fourteen has declined by 66% percent over the past four decades, but incidence of cancers for those aged 1-19 increased by 19 percent between 1973 and 2002. Similarly, rates of thyroid and rectal cancer are increasing. For prostate and colon cancer, incidence rates spiked with the introduction of screening, and then decreased. Between 1975 and 2003, incidence rates of prostate cancer nearly doubled while death rates decreased by about 15 percent (from 2.5/100,000 for men under 65 and 227.5/100,000 for men over 65 in 1975 to 1.9 and 196.9, respectively). Over half of pancreatic cancers are diagnosed at later stages when the five-year survival is only 2 percent. Some cancers have been clearly linked to hormonal use, asbestos, cigarettes, hair spray, and nuclear fallout, but stats in themselves remain obdurately unable to produce causal explanations.
It might be tempting to stop, draw conclusions, and compare different types of cancers. But any such attempt would be immediately stymied. Cancers, for example, are often graded to determine how aggressive they are. Then again, doctors will often tell a patient with an aggressive tumor that he is lucky, since chemotherapy tends to work better on more quickly dividing cells. Although cancers are listed in the registries by the organ that hosts the initial cell division, often these categories mislead, since even tumors that start in a particular organ can be a completely different type of cancer, and sometimes physicians can't tell where a widely metastasized cancer started. Such categories can have significance for detection, though, as witnessed by the recent introduction of the term "below the waist" cancers. This term calls attention to the way that curtains of discretion can affect the spread of the disease and the likelihood that one will seek advice for symptoms that most people don't want to hear about, let alone talk about.
Already, the statistics of incidence and mortality confuse. Add to this race, stage at diagnosis, time to recurrence, a three-to-four-year time lag in collating cancer data, and the fact that many states do not keep adequate registration records, and cancer becomes virtually impossible to track. And of course, although statistics mark diagnoses and deaths en masse, the actuality of "one here and one there" means that each case alters, for better or worse, the flourishing of whole communities.
To be sure, each cancer comes with its own unique way of torturing people. Some cancers present so rarely that virtually nothing is known about how, why, and when they spread. Others may begin in different organs but attack in similar ways, such as by causing loss of a vocal chord, making it difficult to walk, or changing physical appearance. Two people with random cancers might find solace by sharing the prognosis rather than the etiology of a disease. Debate rages about whether very early "precancers" should fall under the category "cancer" at all (a question I take up in chapter 7). This debate carries dramatic implications for the statistics, not only in how the data are listed, but for policy decisions that affect screening and treatment protocols that are based on extrapolations from population data.
People with good prognoses die, and people with bad prognoses live, so churlishness about who gets to carry the "real" cancer card can only take one so far. Besides, people who survive benefit everyone facing discrimination and counter the cancer-diagnosis-equals-death-sentence perception. Nonetheless, the very word cancer is so fraught that the fact that the cancer may be tiny and curable can be lost on a patient. Type of cancer can be confusing in another way as well: both Susan Sontag and my friend Jane "officially" died of leukemia, though the leukemia was the result of treatment for other cancers.
In their 1981 book The Causes of Cancer, Richard Doll and Richard Peto list three types of cancer of "outstanding importance" that, as of 1978, accounted for half of all cancers: lung, large bowel, and breast. These still remain the top killers, seemingly intractable medical and social issues despite the billions spent on antismoking campaigns, research, education, early detection, and treatment.
Race offers another way to parse the statistics. Overall, African Americans have more cancers, as well as higher mortality rates. Some researchers ascribe this difference to biology anchored in racial characteristics. Other studies find that once African Americans have access to screening, their cancer incidence and survival rates become comparable to those of whites. Such examples show that the categories used to collect data may be misleading if experts attribute disease patterns to race or age alone rather than considering access to healthcare or environmental factors.
Risk does not deal fairly. Still, in some ways the risks of getting or dying from cancer can be measured against social status. Educational status matters more than race for absolute death rates. Less educated people are more likely to smoke (by a factor of three) and more likely to be obese. Whole groups of people, depending, say, on who might be eligible for spousal healthcare benefits or which jobs come with benefits, are excluded from healthcare coverage. One person I spoke with who was diagnosed with cancer at the age of thirty-three traces his symptoms back to when he was sixteen. However, as the son of a working-class single mother and then as a contract worker in the computer industry, he had no insurance until he got married at age thirty-three, three months before he collapsed in a subway station, which led, finally, to the diagnosis of his cancer.Minorities who have experienced, or interpreted, discrimination are less likely to visit doctors for checkups or to follow up on health concerns. One study found that nearly 80 percent of nurses did not want to touch their gay and lesbian patients. The Mautner Project, subtitled the National Lesbian Health Organization, finds that "lesbians are likely to receive substandard care, or remain silent about important health issues they fear may lead to stigmatization. ... Lesbians may be one of the most medically underserved populations in the U.S." Another study, one that used actors and scripts, found that given the exact same symptoms and age, women were less likely to be treated with the standard of care that men received, blacks less than whites, and black women were the least likely to receive medically indicated follow-up. This was true regardless of the race and gender of the doctor. Systematic discrimination is also disguised by the fact that the cost of medical insurance is the same no matter how actual care received measures against the standard of care.
The statistics, vast enough to argue for the significance of a researcher's findings, or to claim a political agenda, also serve to shore up a notion of the disease-or the sum of the various diseases-that we implicitly agree to call cancer. The numbers create categories that might be inhabited and battled in terms of odds. Others have found more fluid ways to live with, and inside of, the new versions of time presented by the data. Often, this brings us to narrative.
It Must Go On
Prognostic time demands that we adopt its viewpoint, one in which the conclusion haunts the story itself. Familiar dramatic narratives offer a pleasurable consummation. Knowing from the beginning how a Shakespeare play ends, we can anticipate that end throughout. By disclosing the eventual death of the protagonist in an opening scene of her play W;t, Margaret Edson offers the omniscient opportunity to witness Bearing's journey into that experience. In this way, the play mimics other artifacts of cancer culture in which endings and beginnings are entwined. The clinical trial report states survival statistics, while the medical malpractice archive documents injuries and deaths. In these archives, the punch line of the future is dissipated, dissolved into the past-we know the end of the story even as we read it from the beginning. The temporality echoes the double action of prognosis: causing and evacuating the terror of a potentially limited future.
Vivian Bearing, W;t's terminally ill English professor, offers a grammar, rather than a chart, for approaching death. She speaks about Donne's Holy Sonnet VI: "Nothing but a breath-a comma-separates life from life everlasting.... Death is no longer something to act out on a stage, with exclamation points. It is a comma, a pause." The pause indicates the blip between time lines-the one that leads toward an inevitable death, and the other in which there is no death. Amid all the ways to mark illness-the check boxes on forms, the numbers, the wigs, all the things that purport to carry meaning but can as easily occlude it-the comma, for Bearing, carries both significance and mystery equal to impending death. Punctuation provides comfort.
In Donne's poem, where death merely interrupts two forms of life, punctuation provides the structure of inevitability and the means of mourning. But in its own ambition toward timelessness, it also provides the structure for the narrative of life passing into death through the meter of time and recitation.
Using the time-arresting medium of photography, Hannah Wilke, who died of lymphoma in 1993, challenges the viewer to ask related questions about destiny, the future, possibility, and inevitability. Wilke began her project of self-portraiture in the early 1960s, as her mother was dying of cancer, donning Greek robes and photographing herself in sensuous poses, or sticking chewed gum on herself and photographing it, perhaps offering a 1970s New York art-scene version of the Dutch vanitas paintings. If Wilke's early images portray a version of Western archetypal beauty, their meaning shifts dramatically in light of the two-decade series of images that ends with larger-than-life photographs of her middle-aged, positively not beautiful self in hospital gowns, receiving chemotherapy, and losing her hair.
The series of images comes full circle: Wilke foreshadowed the end at the beginning, when she juxtaposed her self-portrait with an image of her dying mother (fig. 3). The artist is young-youthful and white as a sixteenth-century Bronzino, her eyebrows plucked high and perfect; her stereotypical red-rose lips puckered with half a smile, triangulating the nipples of her breasts; her mass of dark hair tumbling around her head as if she were aroused. She looks directly at us. Audacious. Challenging. She reiterates a scene-an icon-a caricature.
Her mother, in contrast, looks down and across, as if toward Wilke's right breast. That gaze triangulates the young Wilke's right nipple and the mother's vertical mastectomy scar, rutted against her dark skin with the cluster of red welts, which must be skin metastases, edging into the taut skeleton of her shoulder. The vivid color in the photograph-black, unkempt wig (surely?), reddened lips-hint at an ersatz health.
Thirty years later, Wilke's final, hyper-staged photos cite the Madonna theme again. In one she uses a pale blue hospital blanket as a shroud that covers both her bald, tilted head and her now sagging breasts (fig. 4). The depths of this image do not conceal a held child, however; the cancer legacy stops here. Taking the photos as a narrative, did Wilke foresee her cancer future? Did she view herself in her mother's fate?
From this vantage point, we can read the first photo only in light of the later one. We know what future they embodied: Wilke haunts us with a near-inevitability. But if her ironically posed grace in the Madonna photo shows the certainty of disease and death, it also iterates the mocking of time afforded by the medium of photography. Photography, as Roland Barthes theorizes, gives each of us a prognosis. A short time before he was killed by a truck as he left his classroom at the Sorbonne, Barthes wrote:
One day, leaving one of my classes, someone said to me with disdain, "You talk about Death very flatly."-As if the horror of Death were not precisely its platitude! The horror is this: nothing to say about the death of one whom I love most [his mother], nothing to say about her photographs, which I contemplate without ever being able to get to the heart of it, to transform it. The "thought" I can have is that at the end of this first death, my own death is inscribed; between the two, nothing more than waiting; I have no other resource than this irony.
He can see it, but he can't get at it. He has nothing to say; he can't transform it. He can only wait. Here again, as with Bearing's comma, the seeming timelessness of the photograph counters the time of life's passage. Wilke's images suggest that prognosis affects every dimension of time, not just the future; the past becomes equally mysterious and unknowable.
Lucy Grealy makes this point explicitly in her memoir Autobiography of a Face, capturing the eeriness of the past under life in prognosis, the sense of how her life's truth and relevance might be "revealed" through diagnosis. Grealy was diagnosed with Ewing's sarcoma in her jaw as a child and underwent years of harrowing surgeries that attempted to reconstruct her face disfigured by radiation treatments, until she died of a drug overdose at age thirty-nine. Here, Grealy recalls a precancer childhood memory that becomes epiphanic after diagnosis:
As I sat there on the playground's sticky asphalt I experienced time in a new way.... A year before, my class had gone on a field trip to a museum where I became fascinated with a medieval chart showing how women contained minute individuals, all perfectly formed and lined up like so many sardines in a can, just below their navels. What's more, these individuals contained more minute versions of themselves, who in turn held even more. Our fates were already perfectly mapped out within us.... It's impossible for me not to revisit this twenty-year-old playground scene and wonder why I didn't go right when I should have gone left, or alternatively, see my movements as inexorable. If the cancer was already there, it would have been discovered eventually, though probably too late.... Sometimes it is as difficult to know what the past holds as it is to know the future, and just as an answer to a riddle seems so obvious once it is revealed, it seems curious to me now that I passed through all those early moments with no idea of their weight.
Trying "to know what the past holds," what alternatives and what necessities it contained, can become a near obsession when a person with advanced cancer faces the flimsy pages of a medical report. When a patient learns, for example, that her cancer, though present, was undetected in earlier tests and thus unannounced in earlier reports, this realization turns the faulty reports into the material remnants of lost opportunities-of times when treatments might have been less invasive, more efficacious.
No matter how far one's cancer has spread, virtually everybody wishes they had been diagnosed sooner. At the retreats I attended, people talked about their alternative, possible pasts: the shame of not having done self-exams, of delaying tests because of being too busy, or of not wanting to ask more of already overworked people. Sharon said: "I wasn't politicized enough and aware enough to ask." Liz talked about the junctures when her doctors didn't believe her reports about her symptoms. Not believing them herself, she decided to collect evidence of her yet undiagnosed leukemia herself, storing blood in her refrigerator and photographing it. Despite the action she took on her own behalf, regret and shame filled her memories: "How could I have just let it all happen, with all these signs-how could I have, you know, gone for my course in Toronto when I had to get up five times because I was bleeding so much?" Alice asked, "How could they have missed two tumors 11 cm and 10 cm that were fused together? On my CT scan they thought my tumor was my uterus." Tina, a nurse, asked: "How could I have had so much trust-how could I have been so lackadaisical about my own health?" When she needed to book her surgery, her nurse-colleagues told her not to book it for the fall since they were short-staffed. So she delayed and later wondered, "I'm a nurse, for god's sake. Why couldn't I advocate for myself?" Here is Jennifer: "When doctors did not do exams, I did not want to ask them to touch my tits." And Christine: "She told me I was too young to have cancer, and so we just watched it metastasize." And Lynn: "I showed him the lump and he said since it is painful, it is not cancer." Beth: "I don't know why I didn't insist. I guess I just didn't know."
The "how could" discussions expressed a yearning for an alternative narrative that offered better odds. The women's stories recalled moments, imagined crossroads-places at which a different action could have resulted in a different life. Despite the possibility of illness, well people, presumably, entered these life-altering junctures. Advocacy, diagnostic tests, trust-had my friends stayed well, they never would have given such things a second thought. Entering the nexus, not one of those women perceived herself as at risk for having cancer.
If I hadn't been the "1 in 207" women who at my age have my stage and type of cancer, the rifle's spray of statistics would have laid claim to someone else who didn't do self-exams, whose physicians were careless, who delayed her medical checkup, who had no symptoms until it was too late, or who had no medical insurance. The stats don't really talk about that part. They at once describe and mask description. A single number implies both anyone (who could be the one with cancer) and everyone (in a culture and biology of cancer).
Taking up survival odds, counting, and grammar offer various ways in which prognoses come to be made meaningful through the counting, recounting, and uncounting. As fragments, they also create partial knowledge and cast silhouettes that hide other tricks, as the subsequent chapters describe. The prognosis yokes the survivor to the past and future, but confusingly. The adage of "living in the moment" nearly entirely misses the point. Living-in-the-Moment may provide a small resistance to the march of time. But it also mystifies the ways in which daily newspapers, retirement savings plans, and pharmaceutical advertisements alike ask us-even require us-to live in prognosis out there in the wild world, walking before the firing squad. I am alive. No, you are dead.
About the Book
"Brilliant."—Barbara Kiser Nature
"A whip-smart read."—Becky Lang Discover
"A dark journey into cancer as it is understood, diagnosed and treated in America today."—Kirkus
"The book effortlessly combines the author’s roles as a first-person participant in cancer diagnosis and an anthropological authority on why we Americans tolerate high rates of cancer."
"Jain uses dry wit, irony, and occasionaly glee."—Anthropological Quarterly
"The book is compelling and engaging."—CHOICE
"Malignant is a wonderful book... In this candid and critical analysis, [Jain]... eloquently captures the ambiguity and uncertainty that undergird every aspect of cancer."—Journal of Anthropological Research"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
Table of Contents
Introduction: We Just Don’t Know It Yet
1. Living in Prognosis: The Firing Squad of Statistics
2. Poker Face: Gaming a Lifespan
3. Cancer Butch: Trip Up the Fast Lane
4. Lost Chance: Medical Mistakes
5. The Mortality Effect: The Future in Cancer Trials
6. Inconceivable: Where IVF Goes Bad
7. Can Sir: What Screening Doesn’t Do
8. Fallout: Minuets in the Key of Fear
9. Rubble: Bakelite Bodies
- 2015 Ludwik Fleck Prize, Society for Social Studies of Science
- Finalist for 83rd Annual California Book Awards, Commonwealth Club of California
- 2014 Diane Forsythe Prize, American Anthropological Association
- 2014 Victor Turner Prize for Ethnographic Writing, American Anthropological Association
- Foreword Book of the Year (silver medal), Foreword Magazine
- 2014 Independent Publisher Book Awards (Gold Medal), Independent Publisher Book Awards
- 2014 Edelstein Prize, Society for the History of Technology
- 2016 J. I. Staley Prize, School of Advanced Research