Her pioneering book, Older Adults Coping with Cancer: Integrating Cancer into a Life Mostly Lived, is one of the first in-depth studies of the patient population in which cancer most frequently occurs. Surprisingly, cancer research has focused mostly on younger age groups and results tend to be extrapolated to older people. But cancer unfolds differently in elders—from how aged malignant cells respond to treatment to how cancer symptoms present themselves in patients who suffer from several chronic illnesses. Seniors also construe what it means to have the disease differently than do younger people. Kagan’s book looks at several cases of how older adults understand and come to live with cancer.

When she started out on the interviews that underpin Older Adults Coping with Cancer, Kagan still clung to the “health-care provider bias”—an approach that sticks to scripted pathways leading from symptoms to treatments: If you have nausea from chemotherapy, take this pill. About six months into the research, her Aunt Barbara was diagnosed with metastatic melanoma, an aggressive and lethal cancer. Kagan, who was close to her aunt, put the research aside and became Barbara’s caregiver. Suddenly, all the boxes and checklists didn’t fit with the struggle she shared with her beloved aunt. The this-can’t-be-happening sense of unreality on top of So this is what a radiation-oncology department looks like, and Why’s Barbara pacing and chattering on about the damn funeral when I’m trying to understand the plan for her radiation? could not be channeled down the logical pathways her training had laid out. Nothing made sense; everything was uncertain, but Kagan listened closely to what Aunt Barbara needed, hearing the “little things” that would have been missed by her professional-nurse “bias.” “I experienced cancer in ways other than cognitive,” she wrote afterward. “I knew cancer through physical burdens, sensory overload, and emotional highs and lows that colored my lens anew.”

That wrenching, “noncognitive” experience broke open a more feeling part of Kagan that took up residence in her psyche right beside her more analytical self. Together, she believes, they make her a better nurse—and a more effective teacher and researcher.

“It’s inexplicable to us as clinicians,” she says, “unless we remember that we all have that history and those hopes and those dreams attached to significant relationships in our lives. As clinicians, we divorce ourselves from them because our loved ones aren’t at work with us. But we’re treating families, and that has much to do with cancer and with being old.”

After Barbara’s death, Kagan returned to her research with a deeper appreciation for the stories elders tell about what it feels like to be old and have cancer. Everyone has a story, Kagan observes, and the narratives we make up about ourselves change as time goes by. When age or illness challenge who we think we are, we tell stories that reflect it. “To approach any interaction, but particularly as a clinician in healthcare, as though the story doesn’t matter, gives us no space,” she says. “In order to do something for someone, which is fundamentally what health-care is about, you have to know the story, because without it you won’t know what to do or whether what you have done has helped.”

One of her most surprising discoveries is that, unlike younger people, older adults don’t view cancer as “the worst thing” that could happen to them. Lance Armstrong, the champion cyclist, put his life on hold and all his energy into beating back his malignancy. Being “cancer free” became his reason for living, and his “cure” is framed by the pharmaceutical industry and the cancer establishment as a story of triumph and living against the odds.

That all-out “war on cancer” is typical of those who still have much of their lives before them, Kagan explains, but seniors who are at the waning end of a mostly lived life have neither the energy nor the time. For many of the elderly, cancer is just one of two or three or five illnesses they worry about. Breaking a hip is likely the worst thing because you could no longer take care of a beloved spouse, for instance, or get to the bathroom. With cancer, you may remain independent even while undergoing chemo and continue doing, in some measure, the things that make life worthwhile.

“The older people I interviewed—the people who gave me their voices—didn’t say, ‘Well, this is my cancer and this is me,’” she explains. “Nurses and physicians, because the cancer is their business, would very much like to separate them. That separation makes it easier for us to be clinicians, but it doesn’t really fit with how my work has reflected older people managing their diseases. Their cancer fits into their lives in a variety of ways.”

Older Adults Coping with Cancer traces out characteristic stages in how the elderly deal with pain, nausea, fatigue, and other illness or treatment symptoms and weave them into “a life mostly lived.” The basic story pattern is summarized in four phases: life before cancer, coming to “bouts” with yourself, redefining the thresholds of daily living, and living on new terms. The process moves from a stark inner dialogue about a cancer diagnosis: What does this mean for me and the ones I love? What does it mean for my expectations about the remainder of my life? What am I willing and not willing to give up? The dialogue quiets down when answers and management strategies are found, but it starts up again when the new terms and thresholds for daily living are breached once more by suffering. Then a new calculus and a new contract between pain and the self must be negotiated.

For the elderly, “[c]ancer is integrated into an existing life and into patterns of daily living,” Kagan writes. “That life has a long history and a recognized end in mortality. Cancer does not take over the life or sit in opposition to it. Rather, in this process, cancer is one of several losses in health, function, or both, that must be included in daily living.” When integrating cancer (and the myriad afflictions of old age) no longer yields an acceptable “quality of daily living,” a level of function and comfort that each individual defines in their inner dialogue, then death begins to look like a better option.

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2004 The Pennsylvania Gazette
Last modified 02/27/04

FEATURE:
Sarah Kagan’s “Genius Idea”
By Peter Nichols
Photography by Addison Geary

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