Little has been written to guide clinicians, social scientists, families, and individuals about cancer among the "oldest old." In Cancer in the Lives of Older Americans, Sarah H. Kagan approaches this problem from the perspective of more than twenty years of practice, inquiry, and education as a nurse.
2009 | 120 pages | Cloth $34.95
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Table of Contents
Introduction. Finding My Way
Chapter 1. Champagne and Hot Dogs
Chapter 2. Being Old, Having Cancer
Chapter 3. Paradox: Cancer and Aging in America
Chapter 4. Scientific Import and Influence
Chapter 5. Language Lessons
Chapter 6. Aesthetics of Being and Having
Epilogue. Not a Denial of the Fact of Death, a Denial of Death Now
Finding My Way
Shortly after New Year's Day of 2006, I found myself on a street in a small town in New Jersey, a quintessentially American street in a typical American town. Even though the town is a short drive from a big city—just off the main commercial thoroughfare—a bedroom suburb lost in an array of similar places across the sprawling American urban landscape, emotionally this street in this town is deeply and personally connected to an enduring image of the American dream. Single-family homes, neat front yards browned by winter, a few children's toys visible in the snowless remains of Christmas celebrations marked this street that was quiet and absent of any traffic at midday. I came to this neighborhood, a neighborhood that seems familiar in the ubiquitous sense of attaining the suburban version of the American dream, to meet a woman who I think embodies what it means to be old and have cancer in America today. I am a nurse who specializes in helping older patients who have cancer understand and manage the experience of cancer. Mrs. Eck is as much everywoman as she is enduringly and impressively herself. Her story, as she tells it, reveals much of what I seek to dissect and analyze from a societal level in a personal odyssey that affirms relationships, values, and perspective. Mrs. Eck's exploration of her family, her faith, and her outlook is centrally illustrative of the themes, concerns, conflicts, and paradox our society faces in understanding the increasingly common experience of what it means to be old and have cancer in America today.
I arrived at the house that Mrs. Eck has shared with her husband of sixty-one years since they purchased it from her parents. She and Mr. Eck moved in a few years after they married, the memory of World War II still fresh in their minds, the promise of family in their future. One of Mrs. Eck's sons, Joe, and his partner, Wayne, were expecting me. Joe, Wayne, and I knew the same editor, a fact that brought me to meet with Mrs. Eck on this mild winter day. Our connection through this editor resulted in a far more common one: Advancing age is the single greatest risk factor for cancer. The older you are, the more likely you are to be diagnosed with cancer. It is a simple enough equation that renders incredibly intricate, nuanced consequences. As our society ages, more and more families share the journey in which the Ecks find themselves immersed. However, unlike the abstract notion of what it must be to be old and have cancer, each of these families—like the Eck family—understands this experience as highly personal and indelibly particular. They are families with generations of history, individual identities, shared understandings, interactions both comforting and provocative, and knowledge of each member of their family that is irreplaceable—for better or worse, but in cases where older family members are ill and need assistance, generally better. Their family story of an older loved one facing cancer was at once illustrative of, and far more profound than, the social discourse and paradox I sought to represent in a series of chapters for this book.
Mrs. Eck's story is where this book begins, and in a way, hers is where this book ends, as her story becomes emblematic of the challenges, triumphs, and everyday lives that many older people who have cancer live each day. The book's genesis reaches back to my first book, Older Adults Coping with Cancer: Integrating Cancer into a Life Mostly Lived (Kagan 1997). In the process of researching that book, I found myself in a place that so many young and midlife adults do: I was caring for my Aunt Barbara—my mother's older sister—who had been diagnosed with melanoma in October 1992 just after her sixty-second birthday. Barbara was barely old chronologically and not at all typically old in the way she lived her life. She had lived a normally varied life with ups and downs, and her way of living her daily life revealed that place in life, the cumulative knowing of that life, and the expectations of life events in anticipated retirement and family milestones. Barbara's diagnosis caused my academic and professional interests to collide with my personal life. I took a leave from my work to care for her and learned firsthand the trials, frustrations, and even some satisfactions and gratifications as she received care at a major academic cancer center. She had a primary care provider in the community outside that academic system. Her friends, her brother, my cousins, and I all created an immediate web of instrumental care and emotional support around her. We tried to cushion her and ourselves from byproducts of the unexpected—her disease, its abrupt emergence (she was diagnosed after having a seizure at work one afternoon in October), her prognosis, and her daily life overtaken by decreasing capacity and apparently endless health care encounters.
There was a point where Mrs. Eck told me in our interview of the moment when she overheard some physicians talking about her grave prognosis in very frank terms. They evidently spoke unaware that she could hear them. While I did not even consider the parallel during my time with Mrs. Eck, her story brought me back to a moment in late 1992 when Aunt Barbara called and told me, "My doctor [her primary care physician, not her oncologist] told me I am going to die. What will I do?" While Barbara thought it an appropriate pronouncement—she believed in the sanctity of the role of the physician and had trusted this physician implicitly—she rationalized her emotional devastation by thinking through her intellectual understanding of the disease. I called her primary care physician and explained her devastation, never knowing what he made of our interaction but wanting desperately to convey her experience for his discernment. In addition to some emotional recompense for Barbara, I wanted this physician to understand the consequences of his prognostication so that other families might not feel the enduring sting of such words without context or caveat. The pronouncement of Barbara's death was beyond my point, as I think it was for Mrs. Eck when she overheard the similar prognostication she described to me. In any event, telephoned anticipation of Barbara's death came many months too early. My sole focus in resolving our distress and in educating her physician was Barbara's life, not her death. I wanted desperately as both niece and nurse to sort through how I could help her go on living in a way that she desired and that was free of impositions from well-meaning people like her physician who forgot to ask what she wanted and how she wanted it. This general quest has become a long-standing imperative individualized to patients and their families for whom I care in my practice.
Mrs. Eck brought me full circle, too, in recalling how much I learned from Barbara's experience of comfortable relationships with her oncology team and the gratification that comfort brought me. Remembering the superlative kindness of her oncology fellow (a senior physician in training), the remarkable warmth and attention of her radiation oncologist and the entire radiation team, and the incredible humanity of her visiting nurse still brings me to tears, years after her death. They are tears of appreciation and remembrance of the overwhelming grief they assuaged. Remembrance of relationships that these clinicians had with both my Aunt Barbara and me overrides the still-vivid challenges of coordinating her care, unexpectedly harsh interactions, and observation of the sheer hard labor of having cancer when your body has aged sufficiently to lose some of its innate reserve. Ours was a positive family experience of an older loved one living with cancer. Her care was very good, her daily life was what she wanted it to be under the circumstances, and she died as she lived—well, deliberately, and in control. Ours too, like the Ecks', was a very American story of being old and having cancer, although the details, the time, and the place were very different.
The collision that Barbara's diagnosis created in my life—the serious illness of a loved person who had fostered my development in a critical time of my life crashing perilously into the practice of the profession her support enabled me to follow—shattered the ease of that practice and the surety of what I thought I knew. All of this reflection and the sense of disruption that instigated it were, in retrospect, not only understandable but also normal and even healthy. At the time Barbara was diagnosed, I had practiced oncology nursing for just six years. I loved my work and deeply enjoyed varied connections with patients, families, and colleagues—so much so that I pursued graduate studies focused specifically on older adults and especially on older adults who have cancer. Those older people and the way in which I saw them live their lives touched me. I learned from them maxims that I use to coach other patients to this very day. But the maxims were impossible to see without the personal shattering aspects of the professional and consequent reflection to abstract lessons learned.
In a larger existential sense, the collision forced me off the path I thought I saw before me. That path was a peaceful life in practice, in the general direction of my interests in gerontology and oncology but without any driving passion or particular mission. I was left fumbling, searching for another path and a new direction. As with so many devastating life events, I was pushed to a place of reconstructing meaning in my daily life. I began to and still do spend endless time thinking and talking—with those who will engage with me—about myriad facets of the experience of being old—old like Barbara, old in so many other ways of being and meaning—and having cancer. The nature of what it means to be old compels my attention almost constantly. While the state of being old is commonly discussed as an absolute, it is in reality a layered, evanescent flow of human experience. What is old today is glamorized in media analyses of social change tomorrow. A person does not, for example, arise from bed on the morning of a sixtieth or sixty-fifth birthday suddenly old, nor does one become a different person on that particular birthday. Yet social representations of being old clearly connote a moment on which that existence of old age hinges and in which the old become definably different people. My progressive conversation with people who would be judged older by some social standard, whether chronological, functional, or even existential, underscores the nature of aging and of aging in place and situation. I rally against the social notion of distinguishing the old by accounting for difference, choosing instead to see the less visible perpetuation of self and identity with their iterative developmental changes. As a result, my general interests in working with older people who have cancer have evolved. These interests have moved toward a quest to better and more discretely discover how cancers infiltrate my patients' lives both literally—as cancers do—and figuratively, and the ways in which my patients and their lives are altered and are constant.
Many cancers suffered by older adults have caught my attention in the intervening years since Barbara was diagnosed with cancer. Melanoma, the disease Barbara suffered from, and other skin cancers; breast and gynecological cancers such as that of the ovary; and gastrointestinal cancers, such as the diagnosis of pancreatic cancer Mrs. Eck received and the more common diagnosis of colorectal cancer, are diffused throughout the experience of older adults I meet in my daily practice and ongoing inquiry. Breast and colorectal cancers are two of the four most common cancers in our society (Jemal et al. 2005). Cancers of the lung and prostate complete the group—all cancers seen largely in older adults (Jemal et al. 2005). Increasingly, cancers of the head and neck, which are rather rare in the United States but profoundly influence the body, psyche, and soul of those who live with and around them, consume much of my attention (Jemal et al. 2005). They are all cancers—grouped biologically—but they are as individual as the lives they alter. Everything from the symptoms they cause and the treatments they require to the personal introspection and socially mediated perceptions they beget are as unique and simultaneously shared as the older adults, families, friends, and communities living with these illnesses.
Indeed, we do live with cancer in our aging society, from the now ubiquitous bright-yellow LiveStrong® wristbands to the very intimate stories of small moments in otherwise normal and quiet lives. This is a new public phenomenon, one that has emerged over the past decade or so. Striving to understand those small moments and the larger alterations in older adults' lives as they are or are not influenced by the experience of being old and having cancer impels me to observe, analyze, and write. In the time since Barbara's death, I have moved from one coast to another, completed research projects transformed by her experience and been informed by a remarkable group of older participants who gave of themselves when I asked, and found life as an academic surprisingly freeing and rewarding as I pursue inquiry and understanding. While I always tell my students that I had said years ago I would never pursue an academic career, I am—years later—happy proof that the adage "never say never" may be expressed in remarkable ways. My academic career is founded upon the broad pursuit of understanding what it means to be old and have cancer, teaching and learning with others in that pursuit, and aiming in my practice to offer some measure of relief and comfort to those who dwell in that state.
My academic life expresses, in large part, the path that I found after the collision of the personal and the professional during Barbara's illness. The path has taken me, in the intervening years, through many events and epiphanies. It has allowed me to meet many people who are living with cancer and other serious illnesses that engender for them complex physical, emotional, spiritual, and social experiences. My patients are young and old. My rather trite joke to explain that I am interested in the span of human life and the process of aging and being old is, "I specialize in the care of older adults. But don't worry, I don't discriminate on the basis of age—I can help you if you are young too!" After that pronouncement, my occasional pediatric patients tend to look at me sideways as their parents ask somewhat puzzled questions. The young adults smile and wonder what I can really do to help them. The people who society would say are "older" offer any number of reactions, from a welcome and welcoming laugh to probing questions about what I think the state of being old really is today. My conversations with patients and their loved ones are imbued with the accreted knowledge of years in practice, the lessons learned from past patients and from my personal life. I often find myself making statements that begin, "People have taught me over the years . . ." and "My patients have helped me learn that . . ." as I counsel and coach. I often remember Barbara as I try to comfort families of patients who are dying when they ask, "What will it [their loved one's death] be like?" and I often begin by saying, "Many people who can anticipate death through an illness like this one die in the way that they lived. Tell me about how your loved one has lived life." It opens a conversation I have found profoundly useful and reflective of understanding that life on this earth, apart from any spiritual beliefs, ends with death. Dying is most certainly not a separate trajectory from that of life.
My path in the past years has also offered unanticipated shifts and new directions in focus and collaborations. A couple of years after I first arrived at the University of Pennsylvania, I stepped backward onto the foot of a reconstructive head-and-neck surgeon while I was instructing one of my students in her care of a patient on my home unit in the Hospital of the University of Pennsylvania. The surgeon, Ara Chalian, did not wince and walk off as he might have done. He laughed at my literal misstep and instead enlisted me to offer an opinion on the care of that patient, whom he was seeing also. The patient was an old man who had been critically ill and had a tracheostomy (a breathing tube inserted through a surgical incision in the neck into the windpipe, or trachea), though not because of cancer. A funny chance meeting and a provocative clinical question began a years-long conversation about living with and treating people who have head and neck cancers and the demands of caring for people whose lives intertwine complex influences of aging, gender, cancer, embodiment, and aesthetics. Ara's colleagueship leveraged an only meager initial interest in head and neck cancers. Care of people with head and neck cancer is now the clinical subspecialty that so powerfully draws much of my interest and attention and has created further collaborations. I am drawn to head and neck cancers not as a group of diseases but because of the way in which these disorders shape people's lives and alter function, identity, and aesthetics.
Any cancer can do as much to alter the life of an afflicted older person. Breast cancers are widely known as diagnoses that reshape women's bodies and lives—some of that reshaping is visible, but much of it is largely invisible as the perception of identity and the self that has been understood for decades is immutably changed. Cancers of the digestive tract—like Mrs. Eck's pancreatic cancer—are less well known than breast cancer. Thus their stamp on the lives of older people is less visible and less available for public discourse such as this book. We can, for example, understand that breast cancer has both public and private ramifications. Media coverage of breast cancer reveals the public implications for women's roles, improvements in breast-conserving surgery, and treatment advances. Social understandings of the breast and some directions in the debate about the manner in which older women's lives and experiences are shifting in an aging society suggest that we can contemplate private and more personal interpretations of breast cancer for older women. Conversely, cancer of the pancreas is less common and more difficult to treat than breast cancer. Mrs. Eck's story of treatment avenues pursued and blocked is not uncommon given the behavior of the disease. Less available media coverage reflects the challenge to successful treatment and the limited options that stem from difficult detection and diagnosis of often advanced cancer—something Mrs. Eck's story reveals to us as well. Finally, the relative degree to which cancers of the digestive tract are discussed in public and championed in media campaigns likely reflects our disinclination to examine the digestive tract, with its mysterious and socially discomfiting emanations. Katie Couric's public voice behind the Entertainment Industry Foundation's initiative called the National Colorectal Cancer Research Alliance is emblematic of how recognition of some of these social forces results in campaigns that target them. Consider, for example, a national news media anchor—Couric—undergoing a colonoscopy to detect colorectal cancer on television. Surmounting several mores about the body, digestion, and defecation in particular is required for the act to achieve its aim of increasing participation in the same test among the audience watching her screening for the most common digestive tract cancer. Arguably, the pancreas has a lower social profile than the colon and rectum in the context of understanding what it is to live with cancer as an older person. Beyond its connections with diabetes mellitus, the pancreas remains a medically suffused void in social conversation. Hence I leapt at the opportunity to interview Mrs. Eck. Her age, life, cancer, and experience represent converging social concerns on which my study centers.
Mrs. Eck's is a singular and personal story in which I hope she shines vividly through as a person with a particular aesthetic and way of being, representing her generation and age as well as the experience of cancer as an older person. How Mrs. Eck reveals meaning in her experience of being old and having cancer is as much her as it is her story of being treated for pancreatic cancer. But it is the lack of social familiarity pancreatic cancer holds that in part allows us to see that experience. More commonly discussed cancers that have the social advantage of being familiar, easily talked about diseases—like breast cancer—may predispose those of us who read and think about being old and having cancer to judge that experience with this advantage in mind. I aim specifically to uncover and highlight less socially known and discussed aspects of being old and having cancer. To achieve this aim, I must in part avoid the familiar, call up the unfamiliar, and contrast the visible and public with the less visible and private. Thus Chapter 6 examines the individual human aesthetic found in embodiment and asks how it is changed by age, gender, and cancer. I strive to reveal this as seen, for example, in the alteration of an older woman's breast in breast cancer treatment or in the fears of an ostomy for colorectal cancer—both generally outdated templates for current treatment of these cancers. The return to consider the aesthetic and social understanding of what it means to be old and have cancer is achieved using the case presented by head and neck cancers, with their uniquely visible effects on the human body and its innate function, as an illustration juxtaposed against the well-known and less visible case of breast cancer. Head and neck cancers are unfamiliar and often affect aesthetics and function in very public ways while breast cancer offers familiarity and a more private impact to illustrate the analysis.
I begin with Mrs. Eck's story, revealing both common and unique themes in her experience, with the aim of setting a human stage for a discussion that often addresses cells and drugs, diagnoses and prognoses without sketching the people who live it. The chapters that follow are a more abstracted discourse on various aspects of what it means to be old and have cancer in our society today. These chapters emerge from my perspective on my practice as a nurse, inquiry, and education and of connections with countless events and individuals who have influenced my thinking. The epilogue returns to Mrs. Eck and her story. Her son, Joe, and his partner, Wayne, and I carried on an extensive conversation around my interview with her. Our dialogue, I think, portrays their hopes and concerns for Mrs. Eck in the context of their relationship with and knowledge of her. Their voices are, as is hers, at once unique and deeply attached to Mrs. Eck and simultaneously illustrative of thoughts and feelings shared by family members of older adults who have cancer across the country. I excerpt and comment upon that conversation to close this discussion of what it means to be old and have cancer in America today.