Existential Conversations in Cancerland: Facing Mortality While Celebrating Legacy

By Lisa A. Rainwater, PhD

As a counseling intern at Wake Forest Baptist Health’s Cancer Patient Support Program (CPSP), I walked out of my client’s room one day, pulled antibacterial glob from the dispenser, and asked myself, “What am I actually doing?” I had just provided inpatient psychosocial oncological counseling to a client recovering from a laryngectomy—a grueling, disfiguring surgery that, in its immediacy, impedes manifest human life fundamentals: Swallowing, drinking, eating, talking, laughing. My client’s brother had dominated our session by sharing family history and his opinions about his sister’s physical and psychological frailties. My client, determined to participate through her tracheostomy, a white board, and hand gestures, exemplified her resilience: “I am alive! Don’t talk around me! I am here!” 

I experience this phenomenon often at CPSP. A push-me-pull-you of needs, emotions, and fears struggling to straddle cancer’s fissure between patient and caregiver. It is understandable: Studies indicate that caregivers often experience higher distress than the cancer patient (Longacre et al., 2014; McQuellon & Duckworth, 2009). Caregivers’ emotions can feel like a volcano eruption when given a chance to ventilate. In such times, the words of my supervisor, Dr. Richard M. McQuellon, echo in my mind: First do no harm; then do some good. Indeed, managing client needs concurrently with caregiver needs is nimble work. 

Through various modes of communication, my client shared her desire to gulp down an entire jug of water and to eat her daughter’s turkey noodle soup and venison shepherd’s pie—opening up a conversation about pie bakeoffs, knitting, and gardening. At the end of the session, she extended both hands, looked directly into my eyes, and said, “Thank you. I bless you for being here with me.” I left feeling that I had done something, but I could not help but wonder if I had merely been engaging in kitchen table conversations rather than actual counseling. What had I done that would be considered, in the academic sense, humanistic counseling? Had I made an impact? If so, how and for whom? A few days later comfort food was the least of her concerns. We were identifying her post-discharge social support, and then, frantically, she wrote on her white board, “My daughter died.” Her fallen head shook back-and-forth, as tears welled. 

This isn’t uncommon in Cancerland. 

Facing one’s own mortality seems to resuscitate the lives of those already dead: Parents, spouses, friends, war buddies, siblings, grandparents, and, yes, even children. Holding a conversation in Cancerland is always, even if elusively, about death: Not just the potential death of the client but all those who left this world before and those they will leave behind (McQuellon & Cowan, 2010). 

Yalom’s ultimate concerns emerge in a multitude of ways in Cancerland (Yalom, 1980). As a psychosocial oncologist-in-training, I quickly learned that death anxiety lurks around every corner and in every hospital room. And why wouldn’t it? The challenge for the humanistic counselor is to help a client “gather meaning and value from a situation in which they find only despair” (McQuellon & Cowan, 2010, p. 50). I was not prepared to touch death at each encounter. Nor was I prepared to touch the prospects of my own death and the future deaths of my parents, spouse, sibling, and friends. Physician Rachel Naomi Remen (2006) wrote:

The expectation that we can be immersed in suffering and loss daily and not be touched by it is as unrealistic as expecting to be able to walk through water without getting wet. This sort of denial is no small matter. The way we deal with loss shapes our capacity to be present to life more than anything else. The way we protect ourselves from loss may be the way in which we distance ourselves from life (p. 52).

Cancerland forced me to dive headfirst into the water I had avoided for years in fear of getting wet (or drowning). And a bit of drowning I did.

One day I was reviewing charts, and there it was. Not one. But two. Two clients had died within days of each other. The first—a male octogenarian who had found purpose and meaning in life as a teacher and coach—had succumbed to cancer-related organ failure. In his last days, he had shared his life’s work with me. My role: To witness and confirm his legacy and contributing existence on earth. It did not escape me that his storyline was quite similar to my father’s.

My second client was a raw, witty, and tender (although she would never have admitted the latter) woman diagnosed with stage IV ovarian cancer and just a few years older than I. Three weeks earlier, I was bedside as her oncologist told her they had run out of options. Tears pooled in her large blue eyes, as she shared her relief at receiving closure. We sat for a while discussing what she wanted to accomplish before she died: Visiting her aging parents, contacting her long-lost son, finding a home for her beloved cat. She reached out to hug me, and I hugged her back. As I walked toward the door and said goodbye, I felt a heavy sadness that I would probably never see her again. If resilience were a proper noun, it could have been her middle name.

The recognition that these two human beings were gone hit me in innumerable ways. How could I experience such grief for people I had known such a short time? Was it weakness? Was this textbook countertransference? Remen (2010) explained:

The bottom line is that grieving is not meant to be of help to any particular patient. You grieve because it’s of help to you. It enables you to go forward after loss. ‘On to the next’ is a denial of a common humanity, an assertion that someone can die in front of us without touching us. It is a rejection of wholeness, of a human connection that is fundamental (p. 54). 

I cannot deny it. These two people touched me. As do all my clients—many of whom go home and enter survivorship. But a fair share of them do not. 

The humanistic Gestalt-leaning therapist in me recognizes I am part of the whole, and my clients become figures in a moment of time. Important figures who arise in time of need, only to retreat to the background and reemerge with the whole. The humanistic, existential therapist in me recognizes that I am present with them in the here-and-now, bearing witness to their human joys, sorrows, achievements, and struggles. Because they have allowed me to join them on their journey, they will ever remain part of my entire human experience. But they also cannot remain figures forever, because there will be others who emerge and can benefit from similar conversations in Cancerland. If I don’t learn how to grieve their deaths, I will be unable to help anyone else who appears in my foreground.

As a humanistic counselor, my intention is to embrace the grief I feel while embracing my own fears intertwined in their deaths. As Yalom (2009) noted: 

We must demonstrate our willingness to enter into a deep intimacy with our patient, a process that requires us to be adept at mining the best source of reliable data about our patient—our own feelings … It was only when I began working extensively with dying patients (in my fourth decade) that I experienced considerable explicit death anxiety. No one enjoys anxiety—and certainly not I—but I welcomed the opportunity to explore this inner domain with a good therapist (p. 40, 42).

Cancerland conversations take on many forms. The practiced humanistic psychosocial oncologist recognizes which storyline to follow. It’s an intricate dance, that begs the question: “What am I actually doing?” It’s an ongoing invitation to engage and readjust as to meet each new cancer client and caregiver wherever they are in the here-and-now.

*N.B.: Clients’ personally identifiable information has been altered to protect their confidentiality.

References

Longacre, M. L., Ross, E. A., & Fang, C. Y. (2014). Caregiving choice and emotional stress among cancer caregivers. Western Journal of Nursing Research, 36(6), 806–824. https://doi.org/10.1177/0193945913510211

McQuellon, R. P., & Cowan, M. A. (2010). The art of conversation through serious illness. 

Lessons for caregivers. Oxford.

McQuellon, R. P., & Duckworth, K. E. (2009). Health-related quality of life and cytoreductive

surgery plus hyperthermic intraperitoneal chemotherapy. Current Problems in Cancer, 33(3), 203–218.

Remen, R. N. (2006). Kitchen table wisdom. Riverhead Books.

Yalom, I. D. (2009). The gift of therapy. An open letter to a new generation of therapists and  their patients. Harper Collins.

Yalom, I. D. (1980). Existential psychotherapy. Basic Books.