Unpacking the dissonance offers insights into how notions of health are shored up and made to seem like an entitlement, when health is in fact the unspoken tenet of a lifespan, one that is often cast aside as an externality. No one feels this more baldly or sees it more starkly than those who have slipped off the bandwagon at the peak of the party onto the cold, hard cement.
CANCER BURDEN
If the organ that first harbors a cancer provides one way to chalk up numbers, age offers another vector through which to analyze the social dimensions of the disease. One of the most delightful characteristics of youth—that you are indestructible (until you’re not)—is one of its greatest risk factors, as well. Cancer is the largest disease killer of adults under forty. One in forty-nine young American women and one in sixty-nine young men are diagnosed with invasive cancers.4 The numbers are far from insignificant, especially given the social costs of the number of years of life (read, productivity) lost. Yet until about five years ago virtually no oncological attention was given to this demographic.
While cancer survival rates have steadily, if haphazardly, improved for children and older adults, they remain historically static for young adults. Adults under forty don’t undergo regular screening, and as students or temporary employees, they often don’t have access to regular healthcare. In cases where they do seek out care, younger adults have little experience advocating for a definitive diagnosis. Furthermore, doctors often work under the misguided assumption that cancer is a disease of older people, leading to an immorally high number of delayed diagnoses and, in turn, the large proportion of late-stage cancers. This misinterpretation of cancer carries enormous financial and personal costs, costs that are more often dismissed as individual misfortune—an act of God, perhaps—than as problems with the diagnostic process and access to healthcare.
Alison, age forty-one, spoke before she died of her months of being misdiagnosed by a pulmonologist at University of California, San Francisco, who claimed that she must have asthma rather than a metastasis to the lung of a cancer that she had been treated for three years prior. Afterward, she was confounded by her doctor’s “lack of curiosity,” but she said she didn’t advocate too hard because she didn’t want to hear that she had a metastasis.5 Petra initially went to her ob-gyn to have a hard spot checked out when she was thirty-six. The doctor thought it was nothing but promised to keep tabs on it. The next year she went to the office again, though the original doctor was not available. The new doctor ordered a mammogram, ultrasound, and core biopsies; the ultrasound found nothing, and the day after a core biopsy located an eight-centimeter malignant tumor, the mammogram results came in: negative.6
Gene, twenty-eight, found out in 2004 that a brain tumor recurrence had been growing since 2000, yet no one had passed along the information. He has those original radiology reports, but the doctor left the practice. Jess’s doctor pulled a silicone “practice” breast from the cupboard to show her the difference between a hard lump and a soft lump, diagnosed hers by feel as a benign cyst, and delayed diagnosis by over a year. A freshly minted thirty-three-year-old lawyer I spoke to had waited for six months until the insurance that came with a new job would cover her visit to a doctor. She was diagnosed with metastatic cancer and died six years later.7
Compounding these problems, younger people suffer from an intense “cancer burden.” Often they have few savings on which to draw during long treatments; have young children to support; face job discrimination and job loss; and, if they survive, suffer from a chronic condition that may cost thousands of dollars a year even with insurance. Furthermore, the stereotypes about cancer lead to the profound alienation of young adults, who, often the youngest people in the chemotherapy room, need to cope with the inexperience and misinformation of their friends, family, communities, and at times, even physicians. Few clinical trials focus on young adults, and overall they have poorer outcomes than the older and younger groups with treatments standardized for those demographics.
As with the cancer category more generally, it barely makes sense to consider cancer in this demographic as one disease. Mean five-year survival rates for young adults (15–39) exceed 94 percent for Hodgkin lymphoma, thyroid carcinoma, and testicular tumors. Notable improvement has taken place in acute leukemias, while survival rates for numerous other cancers remain intractably low, particularly when controlling for stage at diagnosis. With metastasis, mean five-year survival in this age group slips to 89.7 percent for thyroid carcinomas, 86.7 percent for Hodgkin lymphoma, 73 percent for testicular cancer, 47.8 percent for ovarian, 31.6 percent for breast, 18.9 percent for colorectal, and 5.9 percent for lung.8 (I examine various aspects of cancer and young adults in other parts of Malignant.)
The nearly complete lack of socioeconomic support that presses those with catastrophic illness entirely out of the system bears some examination, especially given the pivotal role young adults play economically. Having to watch the economy of accumulation from the outside—to decide whether to return to work or stay on Social Security disability, for example—might give new insight into the justifying logics of mortal lifespans in immortal systems.
Cancer itself parodies the capitalist ideal of accrual through time, and people with cancer inhabit its double consciousness. In the cancer complex, the relations among cell division, financial accumulation, and deferred gratification are anything but linear. For each postdiagnosis individual, the story will go one of two ways: You will have a recurrence, or you will not. You will die of cancer, or you will not. You will be ill for a long time, or you will not. If you defer your spending for too long, you won’t get to enjoy it. But if you don’t defer . . . well, what if you survive but have spent all your money on a new kayak and a trip down the Grand Canyon? What if you want to go back to work but can’t because your employer found out you had cancer and fired you? What if you can’t get insurance because of preexisting illness? What if your small business didn’t survive the time you had to take off for treatments?
When I was in college, my dad offered me ten dollars to read a book called The Wealthy Barber.9 In this book I learned the value of starting to save early in one’s life. The book claimed that the barber or secretary who began working and saving at age twenty was far better off than the teacher or nurse who began working at thirty or the lawyer who spends all her money on Pebble Beach vacations. That extra ten years of working and saving, even with a low salary, adds up some forty years later to a princely sum on which to retire. The book aimed to show how people who live for seven or eight decades can hook into market systems that grow for a couple of centuries to their advantage. These systems value modest barbers who know how to play the system more than spendy lawyers who don’t bother. The trick lies in time—specifically, in having a lot of it during which to watch one’s savings grow inside the market.
The morass of young adult cancer, the confusion and dislocation, can be read as a collision in modes of time. In an aspirational, personal, and normative timeline, one supports one’s kin. In losing one’s relation to that, an immortal timeline ticks by as one misses the chance to put aside savings and get that promotion. These two temporal modes can compete and destroy each other with even the smallest trip-up in their assumed alliance.
The idea of lifespan justifies the pressure on young adults. After all, when else would one save for retirement or have young kids? The obviousness of this question indicates the centrality of the larger social fantasy that holds together the economic necessity of one’s “productive years” in which one is assumed to be the most attractive, the most fit, the most able-bodied of one’s life. Yet precisely when people have to drop out of those years because of the brute bad luck of illness, one finds, instead of the expected social supports, people holding their own fundraisers or websites auctioning massages and hula hoop lessons to pay for chemotherapy. As one twenty-nine-year-old who has been living in the cancer complex for fifteen years put it, “A fundraiser is where you invite people to a big fun event, serve great drinks, and do everything possible for them not to think about cancer.”10 You do want people to feel good and strong so that they will open their wallets, and who doesn’t like good clean fun?11
GAME FACE
When