The ASCO Post is pleased to reproduce installments of the Art of Oncology as published previously in the Journal of Clinical Oncology. These articles focus on the experience of suffering from cancer or of caring for people diagnosed with cancer, and they include narratives, topical essays, historical vignettes, poems, and photographic essays. To read more, visit ascopubs.org.
Sola L. Kim, MD
Daniel E. Epner, MD, FACP
My experience as a first-generation American physician has been unlike many of my peers, whose parents were professionals or entrepreneurs before they immigrated to the United States. I spent much of my childhood living in a trailer, as my parents worked 12-hour days, 7 days a week, to earn just enough to make ends meet. My mother had little formal education and grew up on a farm in South Korea, so she was no stranger to hard work. After she arrived in Junction City, a small town in Kansas, she found work as a hairdresser, a job that required limited English proficiency. Although she charged her customers in dollars, my mother soon adopted the custom of quantifying material goods by the number of haircuts she would have to complete to pay for them.
My father was a gifted athlete who played baseball in the minor leagues and competed as a bodybuilder in South Korea. He gave up his dream of becoming a professional athlete when he moved to the United States and instead worked first at a shoe factory and subsequently in small real estate ventures. He introduced me to tennis, mostly as a form of exercise. However, I soon became passionate about tennis and practiced at every opportunity, outplaying my father within a couple of years. I accomplished this with an old, beaten up, wooden racquet handed down from my brother. It had scratched edges, a worn handle that had been replaced many times, and a slight deformity from the time I unsuccessfully dove for a drop shot.
The better I became as a tennis player, the more desperate I was to replace that relic. However, seeing how hard my parents worked, I hesitated to ask for a new racquet. When I finally summoned the courage to do so, I distinctly remember my mother, with her trademark mix of Korean and English, considering my request for a few seconds before declaring “that will cost seven haircuts,” which I later realized would have bought food for an entire week!
Shattering Stereotypes
My most memorable tennis experience, and arguably one of the most formative experiences of my life, occurred when I competed in the state tennis tournament—something no one from Junction City had accomplished in decades. When I made it to the state tournament, many doubted that I would win a single match. I practiced on cracked public courts with threadbare and sagging nets, whereas many of my opponents took private lessons at fancy racquet clubs.
For the first time in my life, I felt like an outsider, because of both my humble tennis pedigree and my ethnicity. I felt a small measure of how my parents must have felt when they settled in northeast Kansas. Initially, I doubted myself, but I gained confidence with each win, with my parents’ unwavering support and with the eventual support of bemused spectators. I made it to the final round and shattered stereotypes along the way—one of my proudest accomplishments. After that experience, I realized that my mother, with her deep wisdom, bought that Wilson racquet to give me the opportunity to live a well-balanced life, which is something she never had growing up.
A Stroke and a Colorectal Mass
My parents sacrificed everything to allow my brother and me to achieve the American dream. Their own health was their last priority, and they lived by the mantra, “I feel good, so I am good.”
Without preventive health care, my father suffered a devastating stroke during my internship; it left him with right hemiparesis and expressive aphasia. So, just as my brother and I were becoming fully independent, my mother abruptly transitioned from fending for her children to caring for her husband. My mother expended tremendous physical and emotional energy to care for my father while she continued to work as a hairdresser.
I was not surprised initially when she lost a few pounds. However, I was surprised to learn of my mother’s continued weight loss and progressive constipation during one of my visits home near the end of my residency. I urgently advised her to seek medical evaluation, which revealed my worst nightmare: a large, obstructing, colorectal mass.
Everything I have read about doctors who experience illness, either as a patient or as a family member, is true. Waiting in the exam room for the oncologist to enter to discuss staging studies as my mother squirmed on the exam table was excruciating. His introductory pleasantries were lost on me. He uttered many words while he reviewed the results, but only one registered: “metastatic.” I was in a fugue state as my mother initially sat smiling beatifically on the exam table, unfamiliar with medical terminology and therefore unaware of the gravity of her situation.
As soon as I recovered sufficiently to explain, my mother immediately declared, “No treatment. No surgery,” and she meant it. My mother is stubborn in that way. She has always believed that there is no point in dwelling on bad things. According to her life view, everything happens for a reason, and one needs only forge ahead when faced with adversity. Perhaps for the first time in her life, my mother chose to seize complete control over how she would live her life. As a child in Korea, she was compelled to get up before dawn and tend to livestock and crops. Later in life, she had to cut hair for 12 hours a day and tend to her family. Now, she just wanted to rest and live out her remaining days with dignity.
A Fighting Spirit
As a palliative care physician, I respected her autonomy and her desire to maximize her quality of life, but I was terrified to imagine my mother suffering unnecessarily from an obstructed bowel. I strongly urged her to undergo surgery. Observing my struggles to convince my mother, her doctor explained that “dying from an obstruction is a miserable way to go.” It seems that my mother needed a forceful message, because that conversation finally convinced her to undergo colonic diversion, which dramatically improved her quality of life. She even agreed to chemotherapy and is experiencing a response to treatment, at least for now.
After that conversation with her oncologist, I decided to explore the motive that drove her initial reluctance to undergo surgery. My mother explained that she did not want surgery because she believes that all things in life happen for a reason and that, when a person’s death approaches, he or she should face death with courage and strength. She was in essence saying, “There is a time for everything, a time to be born and a time to die… and this is my time.” Hearing her say this, I felt a deep connection and respect for her fighting spirit. I suspect that my mother would eventually have agreed to surgery had the oncologist explored her concerns and led her to see how the procedure would help her live better.
I approach my patients with openness and curiosity; I know that if I need to learn more about their goals, dreams, and fears, all I need to do is ask.— Sola L. Kim, MD, and Daniel E. Epner, MD, FACP
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My mother’s experience with illness also stimulated me to reflect on how we approach advance care planning. When I was a resident, we were strictly required to document a code status for every patient admitted to the hospital, whether the patient chose to be full code or do not resuscitate. I thought of advance care planning essentially as a binary decision or as a box to be checked. I have come to realize that such conversations are far from binary, but rather are nuanced and fluid. In oncology, a patient’s decision about whether to undergo mechanical ventilation or chest compressions can reasonably be expected to change over time. These conversations are opportunities to understand our patients’ priorities as their illness evolves and to connect with them as people.
More at Peace Now Than Ever Before
I find that discussing these matters with my family is much harder. I had never even considered a discussion about death with my mother until her illness because the subject seemed taboo. Even after her diagnosis, I feared that discussing death would seem pessimistic and would diminish her hope. Imagine my surprise and relief when I found that my mother was relieved when I finally asked her about her thoughts on resuscitation efforts.
Through this journey, she has never wavered on how she wants to live the rest of her life, which is with grace and dignity. I used to call her a few times a week, but now I call her every day without fail, even if we talk for only a few minutes. Through these conversations and many others during trips home, I have learned that my mother does not want to continue to receive chemotherapy in the future if it unduly compromises her quality of life. We even made funeral arrangements for both of my parents; my mother wants to be cremated without a wake and wants her ashes to be taken to a mountain top and scattered in the wind, setting her soul free to roam this world. I initially felt guilty for assisting with such arrangements, as if I were being defeatist and pessimistic, but I now see my mother’s relief at not having to make these decisions alone. Ironically, she seems more at peace now than ever before.
My mother’s approach to her illness initially seemed to me to be different from what I viewed as the typical Korean approach. Unlike my mother, most Korean people whom I have known push for every aggressive intervention to prolong life in the face of grave illness, seemingly regardless of the consequences. However, the more I thought about it, the more I realized that Koreans who take an aggressive stance to life-threatening illness are no different from Americans who opt for the same. In the end, my mother’s outlook is not a reflection of heritage or a particular cultural tradition, but an expression of her unique world view. As I help my mother navigate her illness, I also approach my patients with openness and curiosity; I know that if I need to learn more about their goals, dreams, and fears, all I need to do is ask.
A New Normal
My mother has settled into a new normal, much as she did after my father’s stroke. She can no longer work and now accepts help from her friends, church community, and family. Her idea of living life to the fullest doesn’t involve luxurious vacations or material possessions, but rather cultivation of her relationships and doing something simple for herself each day. She spends much of her time reading to learn about a wide variety of subjects, including cooking, gardening, and even medicine.
I recently gave her a charcoal pencil and a sketchpad, as I recalled her love of drawing as a child and young adult—a hobby that she put aside during my early childhood. Tears welled in her eyes as she opened that gift. She finds beauty in ordinary things: sketching our family dog, her hand, or roses from the garden. “I am living,” she recently declared.
A Juggling Act of Caring
During the past several months, I have repeatedly questioned my decision to move two states away for my fellowship. My mother has always been the rock of our family, but our roles are gradually reversing. Since her diagnosis several months ago, I have flown home twice a month to check on her. I even considered moving her in with me, but she is still living well independently. I plan to take a job back home in Kansas in a few months, after I complete my training. When I do, I will assume the role of her primary caretaker, as is customary in the Korean tradition. I anticipate that my life will be a juggling act of caring for my mother, caring for my patients, and—I hope—raising my own family with the same dignity that my mother has modeled her entire life.
My mother has always been the rock of our family, but our roles are gradually reversing.— Sola L. Kim, MD, and Daniel E. Epner, MD, FACP
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As I sit in my new apartment in Houston, I feel a mixture of guilt and pride: guilt at having flourished at the expense of my parents’ suffering and pride at having accomplished the goals we set, from tennis to medicine. My mother continues to insist that her illness will not interfere with my dreams. As she faces the very real prospect of death, she continues to think only of her children’s future.
However, the more I agonize about my emotions, the more I realize that my guilt accomplishes nothing. I have always lived as my parents have, by seeking a better life, by pushing through adversity—a young Korean girl stuck in the middle of the plains of Kansas. Yes, we push and accomplish and suffer. I hope to do the same for my future family one day. But we also live.
Today is Saturday, my day off, and a good day for tennis. I haven’t played in months and just bought a fancy new racquet. But today, I think I’ll use the old Wilson my mother bought for me during high school, the one that cost her seven haircuts. It still feels good in my hand. ■
Acknowledgment: The authors thank Jeremy M. Rodery and Linda C. Epner for their thoughtful
suggestions.
DISCLOSURE: Drs. Kim and Epner reported no conflicts of interest.
At the time this article was published in the Journal of Oncology, Drs. Kim and Epner were both employed at The University of Texas MD Anderson Cancer Center in Houston. Dr. Kim now specializes in hospice and palliative medicine at Stormont Vail Hospital in Topeka, Kansas. Dr. Epner is Professor in the Department of Palliative, Rehabilitation, and Integrative Medicine at MD Anderson Cancer Center.
