Meeting the Self at the Crossroads: Thoughts on Aging as a Young Cancer Survivor

Abstract

Purpose of the study:

With nearly 14.5 million cancer survivors currently alive in the United States, it is expected this will rise to roughly 19 million by 2024. As more people will age with a history of cancer than ever before, it is important to consider how experiences of cancer affect the life course through the bending of time and its interpretation. As such, aging as a cancer survivor must be at the forefront of health maintenance across the life course.

Design and Methods:

Through reference to my own cancer experiences in an auto-ethnographic format, this article interprets the illness experience as co-occurring in a young, aging body. This enhances our understanding of biographical reconstruction and individual liminality through descriptions of wisdom imparted by the cancer experience itself. Knowledge and wisdom are further interpreted as enhancing researchers’ understandings of cancer and cancer survivorship.

Results:

In this article, I use my illness experiences as a young person to describe evolving interpretations of the life course, the aging body, and the self.

Implications:

Concepts presented in this article aid researchers’ understanding of how wisdom might be achieved through the experience of protracted illness over time. Such knowledge has important implications for the management of cancer as chronic, which may be most clearly described through the lens of the ill person.

Describing Cancer

Cancer is a significant burden to the U.S. population, affecting nearly one in two men and one in three women over the life course (American Cancer Society, 2015). Advances in treatment mean nearly 14.5 million cancer survivors are alive in the United States, rising to a projected 19 million by 2024 (American Cancer Society, 2015). Although numerous studies have described the burden of cancer, most have focused on cancer in early or late stages of life. Less understood is cancer among young adults (YAs), a period commonly defined as 20–39 years (National Cancer Institute, 2014). In this age range, common cancers are similar but of different composite than other groups: breast cancer, lymphomas, melanomas, sarcomas (cancers of connective tissues), cancers of the cervix and ovaries, thyroid cancer, testicular cancer, colorectal cancer, leukemia, and brain and spinal cord tumors (National Cancer Institute, 2014).

Viewing cancer as a chronic illness, diagnosis as a YA constrains the projected life course within a unique set of chronic issues (e.g., amputations, cardiotoxicity, economic concerns, infertility, psychosocial challenges, and second primary malignancies) that may signify lifelong pain and suffering (Clark & Stovall, 1996; Feuerstein, 2007; National Cancer Institute, 2014). Highlighted by various, and often co-occurring, chronic effects of cancer and its treatment, survivorship as a YA often portends the life course as decades of life as a “cancer survivor” or as foreshortened. In response, goals and expectations may be altered. To rectify this liminal self, Jones and colleagues (2010) suggested YA cancer survivors find meaning in cancer experiences that will carry throughout the life course. This article advances and applies their thesis by delineating experiences of cancer and ensuing pain and suffering via the experiences of a YA survivor and gerontologist.

Cancer’s Impact

Chronically ill individuals (from cancer or other diseases) often observe an established self-image as deteriorating, with no simultaneous development of an equally valued self-image. Black (2006), Cassell (1991), and Charmaz (1995, 1991, 1983) described chronic illness and pursuant losses to self as fundamental forms of suffering. At once physical and psychological, illness-initiated suffering is described as global, multidimensional, and oscillating (Best, Aldridge, Butow, Olver, & Webster, 2015; Black, 2006; Cassell, 1991). In response, individuals may become resilient to protracted suffering, with unexpected pathways to this end (Bonanno, 2004). Ewing (1990) described:

In times of personal stress or conflict…our old self-representations may inadequately reflect our current experience. …In these circumstances, we may turn to symbolic, metaphorical processes to create more adequate representations of self and other.

Wenger (2013) refined this synthesis of chronic illness with the self as representing a personal, subjective acceptance of illness.

Charmaz (1991) and others (Godfrey & Townsend, 2008) added to this discussion of suffering as centrally located around time, whereby suffering is initiated by fears of an unknown, tenuous future and disrupted life plans in response. Liminality thus evolved to describe this state of being “betwixt and between the normal, day to day cultural and social states” (Turner, 1969, p. 94). Frankenberg (1986) further described “liminality” as the disruption of life by illness, wherein structure and routine are abandoned. Murphy, Scheer, Murphy, and Mack (1988) then applied the term to describe those with chronic disability as “clouded and indeterminate” (Murphy et al., 1988, p. 238). Later, Little, Jordens, Paul, Montgomery, and Philipson (1998) located “liminality [as attempting] to capture something of the nature of the subjective experience of illness, rather than to categorize the changes in social relationships inherent in being ill” (pg. 1490). These studies have furthered understanding of how individuals vigorously confront the simultaneous challenges of chronicity and liminality to negotiate current and future life decisions. Cancer, in particular, represents a temporal wall that signifies a foreshortened life. This may prompt a revised future life course and likely differs depending on one’s stage in life.

Recognizing such “biographical disruption,” we view responses to and shifts in self-notion as initiated by chronic illness and liminality (Bury, 1982). This chronic disruption is thus best viewed through the lens of the life course—no matter how long the life course is. Biographies of older adults reveal a sense of wisdom achieved via co-occurring phenomena of aging, body, illness, and suffering (Settersten, 1997). This understanding presents gerontologists with a set of questions: Is such wisdom obtainable in relative youth among those with serious illness? Does this wisdom differ qualitatively from that of older individuals? How does the tapestry of pain, decline, and fear of the end of life differ in earlier years? Do these remain central components of suffering and how can we utilize this knowledge? My experiences as a YA cancer survivor describe suffering, as a result of confronting one’s temporal wall, as evoking meaning and wisdom of the body.

Narrating Cancer

Arthur Frank (1995) summarized “the significance of a narrative understanding of the self,” whereby “stories do not simply describe the self; they are the self’s medium of being” (p. 53). Embedded in Frank’s statement is the potential to construct a new narrative in order to script a new self (Meador, 1998; Williams, 2000). In cancer, incorporating liminality may be required in order to rectify the self now and into the future. Such use of narrative in (re-)scripting the self further enables the development of meaning, wisdom, and personhood and is one response of many to cancer. Several personal accounts teach us about this use of narrative in rectifying the self (Gubar, 2012; Jain, 2013, Lorde, 1980; Sacks, 2015). These narratives advance previous articulations of disruption and the meaning of chronic illness (Barker, 2005; Becker, 1997; Cassell, 1991; Charmaz, 1991; Murphy, 1990; Nelson, 2001) while simultaneously “becom[ing] old” (Kaufman, 1986). Three particular studies further deconstruct chronic illness impact in a destabilized, autoethnographic format as a way of creating both narrative stability and meaning (Ettorre, 2005; Richards, 2008; Willis, 2011).

What has been less articulated is the phenomenon of cancer as corresponding with a young, but aging body. In acquiring such knowledge, we gain an understanding of wisdom of the body and self as developed throughout the life course and in response to life-threatening and chronic illness (Blows, Bird, Seymour, & Cox, 2012; Exley & Letherby, 2001; Little et al., 1998). In this respect, I am in a unique position to critically evaluate my experiences as a young gerontologist and cancer survivor with the goal of understanding the aging, chronically ill self. Referencing my own cancer experiences in an auto-ethnographic format, I interpret my illness experiences as co-occurring with an aging, though not aged, body (Denzin, 2014; Ellis, 2004) and through the lens of the life course (Settersten, 1997). Described as “an approach to research and writing that seeks to describe and systematically analyze (graphy) personal experience (auto) in order to understand cultural experience (ethno),” autoethography is an opportunity to place the self within research (Ellis, Adams, & Bochner, 2010). Rooted in anthropology, this method has been used by gerontologists (Denzin, 2014; Ellis, 2004) and other social researchers to critically understand a social phenomenon from an experientially-based (emic) perspective, rather than as an outsider (etic perspective; Spradley, 1979). The goal is to answer questions such as: Does enduring life-threatening illness in relative youth impart gifts (e.g., humility, compassion, wisdom) often accrued in later life? Answers potentially resolve issues of how cancer empowers individuals to use personal experiences in easing the pain and suffering of others (Egan et al., 2015; Sinding & Wiernikowski, 2008).

Evaluating Cancer as Co-Occurring With the Aging Body

Viewing my own cancer through the lens of the life course, this paper is at once auto-ethnography and query into what we know about the experience of illness. I reference my experiences as a young cancer patient to describe ongoing (re-)interpretations of the aging body and self (Denzin, 2014; Ellis & Bochner, 2006). This destabilized narrative follows along a continuum of three major points: (a) placing the self into the illness trajectory, (b) reconstructing life around illness, and (c) the acceptance of liminality. These points follow my initial diagnosis and two recurrences to create an illness narrative rooted in an experiential context (Richards, 2008). This narrative thus views illness through the lens of both aging and cancer and youth and cancer, where findings are centrally located on experiences gained and lost.

Part I: Placing of Self into the Illness Trajectory

December, 2005. It will be my 25th birthday soon. I’ve been having unrelenting migraine headaches for months. One particular day stands out:

I’m in the bathroom stall at work. I bang my head. Hard against the ceramic tiled wall. Maybe this will make the pain stop. One hard jolt. It doesn’t stop. Nothing makes the pain stop. I cough. Worse, much worse. I bend over. I scream silently at the agony ripping through me.

Before long, I can no longer walk a straight line. I fear falling at any minute. The vertigo is extreme and I finally decide to see a doctor. Many think I make too much of my symptoms. I can feel people labeling me a hypochondriac. But how could anyone think this is normal? My primary doctor is on vacation and I see a different physician. Examining me, he prescribes headache medication. He instructs me to “have a glass of wine and take a warm bath.” He suggests I have anxiety; I am studying for my GREs, I am applying to doctoral programs in gerontology, I am stressed. Maybe he is right. Friday comes, I take the GREs. Saturday, I feel better. Maybe it was anxiety. I exercise. I feel happy. My adult life is beginning.

Within minutes the vertigo returns. The vomiting starts. Something is really wrong. The following week, I see my primary doctor who sends me for an MRI. The test is on a Saturday. I can see the control booth through the small mirror in the MRI mask. The techs send for a doctor. They gather around, talking and pointing at the screen. They finish the test and quiz me on my symptoms. I know something is wrong before the phone rings Monday morning. I am being sent to a neurosurgeon. My symptoms obscure the magnitude of this situation. My father drives me to the appointment. I am vomiting most of the morning—would I make the trip into the city? But we make it. The surgeon gives the news.

Diagnosis: Likely Grade II ependymoma.

Treatment: Brain surgery. Brain radiation.

January 20, 2006. The tumor is successfully removed. Grading is confirmed at Grade II (2 years later, this would be reclassified as a Grade III anaplastic ependymoma). Following surgery, I feel confused. As a 26-year-old, I think I will bounce back in a week or two. This does not happen. The daily suffering becomes immeasurable. Heartbreak. I lie in bed and pray to die in my sleep if I will not get better. But I live. I continue my work on a study interviewing older adults about suffering. Life is amazingly ironic. Through some of our shared experiences, I see similarities in our fears of the future. What will it be like to grow old and face further disease and suffering?

February, 2006. Recovery is slow. Too slow. I am on the phone. An interview for a doctoral program in Gerontology. I cannot make the words come out of my mouth. My speech is slow. I think they understand that I am serious about this.

March, 2006. I am unable to stand. The room is moving around me. My mother pushes me in a wheelchair up the crowded city street. I am being measured for radiation. But they will not do it. Instead they admit me to the hospital. I have developed hydrocephalus (fluid on the brain). The next day, the doctor will place a shunt along my brain (a draining system that subverts fluid to your abdomen). They shave half of my head; I later shave the other half. Radiation begins in 2 weeks. Much of the regrown hair will fall out.

June, 2006. I am back to interviews about suffering in later life. One man stands out. John suffers over his wife’s advanced dementia. We meet a total of three times. After our first interview, she passes away. He wants to continue the interviews. He hopes that our team will learn from him: “…Suffering. There will be no recovery with that. Whatever has gotten you, has you. It’s got you and it won’t shake you loose.” While we meet, I realize that I have already met my suffering. Cancer. It got me. It still has me.

July, 2006. Last fall, the young man I was seeing discussed marriage with me. Months of weekends spent at the throws of illness. I do not look the same now. I have no hair. The steroids (to reduce brain swelling) have given me acne. I have gained some weight. We never talked about this. I thought our commitment to each other was cemented. Nothing in cancer can be assumed. The phone rings, but I miss the call. I listen to the voicemail. He is breaking things off. Some part of me is sad, but I understand. I am fighting a much different battle. To survive.

Part II: Recurrence and Reconstructing Life Around Illness

November, 2011. Touched by the lives of those I interviewed, I am working on my doctorate. I am a research assistant on a study related to childlessness among older women. My own research, now on cancer, is beginning. I start interviewing. Cancer is central to my existence now, though some days I forget my own struggle. Over 5 years have gone by. I hear that’s the magic number. I awake to sharp pains in my neck and back. More MRIs.

Diagnosis: Recurrent brain tumor. It has spread to my spine. Three more lesions.

Treatment: Stereotactic brain radiation. Spinal radiation. Traditional chemotherapy. Intrathecal chemotherapy, injected in my spine.

The doctors advise I may go into an early menopause. I may never be able to have children. I see a fertility doctor. I decide not to freeze my eggs. I start chemotherapy. My veins fail. I get a chemotherapy port. I lose my hair. This is all largely without any fanfare.

But then the intrathecal chemotherapy:

Lying on the table, the needle won’t go into place. One full hour of maneuvering the needle around my spine. One hour of agony. One hour of calling up every last piece of my self to endure. ‘I’m going to try one more time, is that all right?’ my doctor asks. I don’t know where the ‘Yes’ came from.

Summer, 2012: I have just finished one of the final chemo sessions. I feel sick. Hot flashes are not pleasant. I thought I would be graduating now. Cancer has shifted my plans again. I’m working on my dissertation. Interviewing older adults about cancer. It is interesting. To be at once the interviewer and subject. One encounter sticks out:

I am about to interview Ruth about her experiences as a chronically ill older woman who has been recently diagnosed with pancreatic cancer. She has just finished up with the visiting nursing aide. She is half-dressed. She is wearing no pants. Ruth lets me enter the tiny apartment. Soon, the visiting nurse leaves and we sit at the table. Ruth eats her morning oatmeal. We introduce ourselves. She eyes me, curiously.

Ruth has a knowing smile. A white, silk cap covers her head. She removes this moments later to reveal her hair that has begun to re-grow. It was pure white when it fell out, but now some of it is growing back brown – she is amused by this. Proud. She proclaims that she normally wears a wig when going out and scarf or cap inside. This is another part of her personhood that has been stripped away. It strikes me that, in all she has been through, it is acceptable for a stranger to see her without pants, but her bald head is something much different.

Ruth tells me what cancer means to her: “A year ago it was just a word, now it’s a horrible, flesh-eating disease that takes over your life.” Through this, she continues eyeing me – evaluating me. She scoops another bit of oatmeal into her mouth. I finally understand the nature of her curiosity. I reach up and remove the scarf that covers my own bald head. Ruth has many questions for me now. About hair, about scarves, about chemotherapy and radiation. About fatigue.

In those moments, our ages disappear. The years melt away. The strangeness of having just met is gone. We share a commonality that connects and binds us beyond words. In her eyes, I see how much she appreciates the small gesture of removing my scarf.

Part III: Accepting One’s Liminality

December 10, 2015: I am now a postdoctoral fellow. Working on a project investigating cancer survivorship. The eerie coincidences of my work do not escape me. I am starting to feel sick again:

It’s my 36^th birthday this month. Last night, I clung to the wall to make it through my small apartment. No strength to stand. Like the headaches, this fatigue will not release me. Invisible fractures to who I thought I would be at 36. Scars to my identity. Is this really my body? Will I ever feel whole again?

Back to the doctor. More MRIs.

Diagnosis: Recurrent brain tumor.

Treatment: Stereotactic brain radiation.

January 20, 2016: Ten years since my brain surgery. I thought I would be celebrating the anniversary. But I am lying in the radiosurgery suite. My brain tumor is growing again. It is still small, but it is near my brain stem. They cannot give me as much radiation this time. There is a lifetime limit and I am getting close to it. They have to be careful. I cannot help but to lie here thinking: Is the end beginning?

Several weeks earlier, I received a letter from the husband of one of my dissertation research participants. Arthur’s wife passed away from cancer several years ago. He remains in contact from time to time. I call and we talk. Alone with his memories, Arthur seeks conversations with people who knew Alice. He wants to understand her cancer the only way he can now—through the words of others. He tells me how much his wife enjoyed talking with me about her cancer. It was meaningful to both of them. I am the interpreter. I attempt to describe Alice’s cancer experiences in his words. He laughs at some of the memories. We say goodbye. I promise to call him soon.

January 27, 2016. A week post-radiation. Fatigue and headaches have increased. The challenges of illness plague me:

I feel I am not doing what is expected of me at work and with my friends. I wonder if I have failed others. Am I failing myself? I do not know quite how to exist in this liminality. It haunts me. I falter around myself. I look in the mirror, I do not understand. Why won’t my body just move? This is the trapping of my youth and my healthy appearance.

Cancer has pulled a curtain between me and the rest of the world. I am worn out. My body feels as though it has been destroyed. It cries out from the pressure of its own weight. I have secluded myself. It’s easier this way. It’s safer this way. Yet I continue to push – I cannot rectify for myself this duality of wellness and illness – both seem a mask. Neither seems true.

What I did not say to Arthur was that I understood his wife’s suffering; that would be cruel. And one thing that I learned from my work and my own body is that suffering can barely be described. It cannot be compared. But I am able now to understand some of Alice’s pain. Through my own experiences. Through enduring treatment three times over 10 years. Through the losses. The changed plans. The heartbreak. And through the kindnesses of others. That I may never be able to repay. Through my ability to use my background to enter their worlds. To partially understand the mental anguish that afflicts many cancer patients and survivors who must persist, knowing their future is tenuous. That death will forever loom by their side. One informant said “Cancer can rear its head at any time”. And she was right. Ten years later, I thought I would be celebrating my survival. And though I still do so, celebration no longer feels as genuine when I am lying on a radiation table, fighting.

Discussion

Cancer often presents painful and conflicting insights into the limitations and finiteness of the body and self. At once an acute and chronic illness, cancer may represent a foreshortened life and/or years of suffering as a survivor. Uncertainty in life itself, at the hand of such liminality, is the point at which cancer diverts from most other chronic illnesses. To be sure, the multidimensional impact and experiential milieu of cancer cannot be undersold as truncating individual life around illness. To resolve such lifelong liminality, cancer demands redefinition of one’s roles and the creation of the self anew (Frank, 1997; Markus, 1990; Thomé, 2004).

Randall (2013) noted narrative reflection as a means of resolving the self through understanding and wisdom developed by storying the life. Cancer especially presents a “moral occasion” to reevaluate the whole of one’s life in reorienting time in the present and into the future (Charmaz, 1995; Frank, 1997; Thomé, 2004). In particular, where cancer represents a foreshortened life, experiences are imbued with turmoil and suffering and life is re-shaped in response; this is qualitatively different between older and younger adults where youth is located around health not decline (Black, 2007; Toombs, 1988). For older adults, the event horizon may already be truncated in time. For the YA, however, time they imagined in front of them changes significance as illness and youthfulness coincide. Husserl (1963) described this sort of collision as a duality of self, which Sontag (1977) later articulated as a “dual citizenship.” Though many people protect an illness identity as essential, it represents a disrupted and dissonant self that requires fractured aspects to be rectified through redefinition. As in my case, we have little knowledge of how such narrative reflection and redefinition affects us as we age and develop.

My dual citizenship, in the lands of the young and old, and in the lands of the researcher and subject, enables me a more emically-bound approach to understanding the storied lives of others. My own liminality teaches me specifically about these worlds of pain and suffering, and enables me to understand what it means to age as a cancer survivor. From this “considered position” (Lorde, 1980), my cancer and gerontology together offer an amazing gift to view the self as old, while still young. This presents me with the moral occasion to acquire wisdom of the body as imbued with meaning and that might act as a light on the direction of future research. Further, as a relatively young person, simultaneously aging under the threat of death, my cancer experiences provide a unique, liminal world from which to engage the lives of other cancer patients and survivors. While I do not suggest that I fully understand the meaning of being an older cancer patient, I have been provided a more holistic understanding of the body as liminal. This enables my understanding of the meaning of the declining body and foreshortened life that may be experienced in both the young and the old.

To be sure, my intentions for my 30s were to build a family, buy a home—to create a life filled with “meaning.” It strikes me now that meaning, for me, is simply redefined. I will not have children, I may or may not get married, and my future is tenuous. But on one point, I am certain: my life has purpose. It has meaning. At every turn, without my knowing, whatever powers may be have directed me to a life in service to others. Acquired simultaneously while being young and studying the old, I can now view the aging body and chronic illness through my “considered position.” Such wisdom has important implications for the management of cancer as a chronic condition, which may be most clearly described through the lens of the ill person. As gerontologists, we are tasked with easing the experiences of the aging and aged. We will all have different personal experiences, but it is important to understand how we can connect with other people through our shared histories. Whether you choose to share your experience with someone, or simply let them know that you empathize with them, extending the lens of research by incorporating our insider knowledge of experience enables a deep understanding of phenomena—especially illness and its meaning—in reshaping one’s life. We achieve this through relationships and listening about the lives of other people.

While I believe that I have yet to realize the fullness of my calling, I am steadfast in saying that I have been called. My acquired wisdom of the body emboldens me to educate other cancer survivors in a way that eases suffering. Perhaps I will continue to speak with other survivors in the community or maybe my experience will inform research that advances science. No matter what, my wisdom of the body, achieved through both my experience and those described to me by others, enables an “old wisdom” through empathy. But is it necessary to suffer to achieve wisdom? Surely we will not all suffer (at least not in ways that are always comparable) but one way we can accomplish a shared wisdom is in connecting with our research participants. That is, to not look at them as subjects, but to create the kind of empathetic dialogue from which we learn from the experts: those who are aged or, in this case, have cancer. This will always open us to a place of liminality—where we are there/not there. This is where we truly learn, through relationships and listening to others, and is a prescription not just for research, but for a way of living life. Together, the wisdom we acquire through both research and experience can only make a difference if it we practice as though that knowledge matters. Research does not always do this, but it can. In fact, this is the duty of research and I consider us all called.

Acknowledgments

S. M. Hannum, PhD would to thank the Johns Hopkins Bloomberg School of Public Health and National Cancer Institute for their continued support of her research through the Cancer Epidemiology, Prevention, and Control Postdoctoral Training Fellowship (T32 CA009314). She additionally thanks Helen K. Black, PhD for reading and commenting on drafts of this paper. Finally, S. M. Hannum thanks all of her research informants for teaching her about life and all of her wonderful doctors for enabling it.

References

Author notes