His steps generated a low rumble that propagated through the floor like a tsunami, flowed up through my desk, and ended as tiny waves visible through the clear plastic of my water bottle. His custom Lucchese ostrich boots made a distinctive clicking sound as they rhythmically struck the tile floor, heralding his arrival in clinic. We couldn’t be more different. The senior physician whose practice I inherited after the end of my neuro-oncology fellowship was physically imposing. He still exuded the power and quiet confidence of an accomplished athlete, even though his playing days were long over. His patients had complete faith in him. He was literally large and in charge.
Shiao-Pei Weathers, MD
Daniel E. Epner, MD
In contrast, I am petite and deferential and often mistaken for a nurse or nursing student despite my long white coat with “MD” embroidered in black stitching after my name. Unlike my senior colleague, whose name sounds like that of a classic American jet pilot, my name is distinctly foreign. Patients constantly ask where I am from, and when I tell them I grew up in Ohio, they always ask where I was from before that. I find these scenes to be annoying at best and insulting at worst, but I never protest. I just smile sweetly and quickly redirect the conversation to the medical issues at hand. I have worked tirelessly to gain my patients’ trust, especially those whom my senior colleague has known for years. I well know the cold stares of patients and their families as they scrutinize me upon entering the exam room. They wonder, Does she know what she is doing? Was she trained in America? Am I her first patient?
Meet Patient D
D was one of those patients. He was a 74-year-old man with a low-grade astrocytoma diagnosed 7 years before. A prominent neurosurgeon at our institution resected his tumor, but D declined the recommended postoperative radiation because of concerns about cognitive sequelae. He opted for surveillance, fully understanding the slowly progressive nature of his disease. He was a highly accomplished man, from what I could tell from reading his social history, the director of several successful businesses. As I approached his exam room, I noticed that my heartbeat and breathing were accelerated, so I made a conscious effort to take a few slow, deep breaths and stand up straight so as to project confidence.
I opened the exam room door to find D seated with his legs crossed knee over knee. He wore a perfectly pressed button-down shirt. He personified poise and refinement, just as I had imagined. A copy of The Wall Street Journal was folded neatly across his lap. Like my predecessor, D exuded power and confidence. They must have been quite the pair, bantering back and forth at appointments about their favorite football teams, sharing hunting stories, and proudly displaying pictures of their respective families. I made a conscious effort to establish direct eye contact, and I shook his outstretched hand as firmly as I could. As I did, he said, “You are younger than my daughters.” I felt a flush of heat come over my face as my brave façade withered. He then said, “I’m confident you have reviewed my medical record?” This wasn’t really a question, but I nodded enthusiastically anyway.
“I have worked tirelessly to gain my patients’ trust, especially those whom my senior colleague has known for years.”— Shiao-Pei Weathers, MD, and Daniel E. Epner, MD
Tweet this quote
Before I could get another word in, D began a monologue, explaining how only the best and brightest physicians had taken care of him. He had even received personal calls from physicians at another prestigious medical institution regarding his case. As I listened to the accolades associated with these male senior physicians, I felt myself shrink, literally and figuratively. My inexperience began to feel like an oppressive weight on my shoulders.
After he described his dream team of medical specialists that preceded me, D confirmed what I had read in his social history. He made it abundantly clear that he was an accomplished businessman, having been the president of several banks and bank boards. By the end of our clinic visit, I knew the square footage of each of his three daughters’ homes. I felt tremendously relieved that at least the few words I was able to insert into the conversation during this first visit were to explain that his magnetic resonance imaging (MRI) scan was stable.
Not the Only One With a Brave Façade
For the next 18 months, I saw D at regular intervals. True to form, he would often remind me of his stellar all-star medical team that preceded me and of his successful and financially fruitful career. Over time, however, our meetings gradually took on a different tenor. I became less concerned with his impression of me and more focused on his story and what may lie beneath it. I realized that I was not the only one with a brave façade; his bravado helped him cope with his fear of disease progression. Rather than think of myself as vulnerable and diminutive, I imagined how vulnerable he must feel, as if he were on the verge of losing everything dear to him.
“D may have allowed his medical dream team to diagnose and treat his brain tumor, but he never shared with them his innermost dreams, his wisdom, and life lessons—his legacy.”— Shiao-Pei Weathers, MD, and Daniel E. Epner, MD
Tweet this quote
As my view of him matured, so too did his approach to our conversations. Over time, he spoke less of material things and accomplishments and more about the most important relationships in his life, as well as his hopes and dreams for his children and grandchildren. Oftentimes, I uttered few words during our visits outside of reviewing MRI results, yet he always showed up for checkups. One day, at the close of our visit, he even said, “You are sweet,” as he gave me a hearty pat on the back. This affirmation was not exactly what I was looking for, but I gladly took it.
Then one day, the MRI results that I had been dreading from the start, but which I knew were inevitable, glared back at me angrily from the monitor. His tumor was growing. As I approached D’s clinic room, I felt the same apprehension and anxiety in the pit of my stomach that I had felt before our first meeting. As usual, D was seated reading The Wall Street Journal front to back, completely asymptomatic from the menacing mass in his head.
I reviewed the MRI images with him at length and explained that the features now strongly suggested transformation to glioblastoma, the most aggressive form of brain tumor. His performance status was still good, so I recommended radiation and chemotherapy to prolong his survival. He initially sat silent, absorbing the information, but quickly reverted to his former place of comfort and said he would need his dream team of doctors to approve my plan.
A week later, D called to inform me that his all-star team had concurred with my treatment recommendation and that he granted me “permission” to proceed accordingly. Despite his age, he sailed through treatment and remained physically active, exercising vigorously almost every day. He also continued to read avidly. After completion of concurrent chemoradiation, he completed six cycles of chemotherapy, then resumed surveillance. During these months, our conversations resumed their natural cadence, with me mostly listening as he spoke of his highest priorities, such as family, faith, and friends, and references to his medical all-star team faded into the background. Over time, my feelings of intimidation evaporated, and I looked forward to his visits.
A Life’s Story Unfolds
During his treatment, I was pregnant with my first child and in my third trimester. D always asked me how I was doing and feeling at the end of each clinic visit. Upon learning that my daughter would be my parents’ first grandchild, he volunteered that he had penned a memoir to his seven grandsons that he had thus far only shared with his wife and three daughters. He was letting his daughters decide when to share “Papa’s book” with their sons. Despite keeping his memoir in the family, he felt the advice he offered in it would be widely applicable for any future grandparent, my parents included.
Discussions of his memoir became a vehicle for me to find out more about his life, so I asked about it every visit. Each time I did, his face lit up as he regaled me with tales of his travels with the carnival as a young child during the 1940s and 1950s, riding the rails with hobos in freight cars, and driving a delivery truck alone across the country as a young teen. His story included lifting himself from near poverty to college, then to business school, and finally a successful business career. I think I enjoyed listening to him tell his stories and sharing his life lessons more than he enjoyed sharing them. In some ways, perhaps I was like a daughter or even a granddaughter to him.
Our conversations also turned to the challenges he faced at home, such as his wife’s difficult recovery from back surgery and the impending marriage in California of his eldest grandson. He desperately wanted to make it to the wedding in California and dance with his wife there, but he was distressed by his grandson’s plan to sport a beard on his wedding day. According to D’s sensibilities, facial hair was not an option for the blessed event.
Six months after completing chemotherapy, his tumor grew with a vengeance. He knew that salvage chemotherapy would be a high-risk proposition, so he needed time to consider his options. Perhaps, he thought, it was time to focus purely on comfort and dignity. D was at a crossroads. Or was it the end of his road? He was a man of faith, so he knew that every ending leads to another beginning. His legacy was that which mattered most. Nonetheless, he decided to continue to fight his cancer the only way he knew how—with chemotherapy.
Soon after, when he returned to the clinic for a checkup, he carried a thick manila envelope instead of his usual The Wall Street Journal. At first, I barely noticed the envelope, thinking it was stuffed with insurance documents or a copy of his medical records. Then, during a momentary pause in our discussion, as he seemed to be in a deep state of reflection, he suddenly rose from his chair and held the envelope in front of me with both hands, as if he were a king passing his crown to his anointed successor. I noticed myself reflexively bow my head with respect as I received the massive document and quickly realized that it was a copy of his memoir rather than the administrative paperwork I had assumed. D may have allowed his medical dream team to diagnose and treat his brain tumor, but he never shared with them his innermost dreams, his wisdom, and life lessons—his legacy. I was the only person other than his daughters to hold this cherished document.
“I began to see the same resilient, independent, little boy in the grown man before me battling a merciless brain tumor.”— Shiao-Pei Weathers, MD, and Daniel E. Epner, MD
Tweet this quote
That night, and every night when I could steal a few minutes after rocking my daughter to sleep, I read a few passages from his memoir before going to bed, reliving many of the stories he had shared with me in the clinic. I felt eager to know more about him and his story, and I felt privileged and humbled to be entrusted with the manuscript of his life. The first chapter, entitled “Me and the Carnival,” which described his being born and raised on a carnival, was particularly captivating and poignant. He grew up in poverty, living on the front end of a 12-wheel tractor trailer used to haul rides and concessions from one town to the next every week, just as his father had.
I read this passage as my baby daughter slept peacefully in the next room, her wireless monitor occasionally detecting one of her sighs or the ruffle of sheets. As I did, I felt a deep sense of gratitude for my stable life and upbringing. He then described how, one day, when he was just 4 years old, he suffered a severe leg burn while playing without supervision around a furnace used to burn trash near their trailer; he spent the next several months convalescing in a burn unit in Corpus Christi. He explained that his mother and he were never close, probably because he was highly independent from an early age, essentially taking responsibility for the life-threatening accident.
Before entering first grade, he sold tickets for carnival rides from a wire-enclosed ticket box, learning quickly how to make change. He went on to describe attending a different school each week as he lived the same nomadic life that his father and grandparents had lived. He shared his techniques for warding off bullies in each new school who naturally picked on the carnival kid. He also described how he assembled the massive Ferris wheel and other equipment at the beginning of each week and disassembled them before moving on to the next small Texas town in a seemingly endless cycle. Until he finished graduate school, his carnival life was a powerful shaping force.
Resilient and Independent to the Last
As I read small passages each night, I contemplated how different life must have been for him compared with the lives of kids these days, with their video games, ear buds, and mobile phones. Crickets, axle grease, rusted bolts, and decrepit tractor trailers were his constant companions until adulthood. His childhood was migrant and chaotic, and I tried to imagine the deep sense of insecurity that must have come with living a nomadic life of near poverty, even squalor at times. He must have felt fear, but his memoir was utterly devoid of self-pity. He also described how, later in life, he worked ferociously to achieve business success and to maintain a stable, loving family life. I began to see the same resilient, independent, little boy in the grown man before me battling a merciless brain tumor.
Despite chemotherapy, D’s tumor grew and steadily robbed him of his eloquence and independence. D made it to his grandson’s wedding in California to see the beard in person and to dance with his wife before he transitioned to hospice care. At one of our last visits, D mentioned his all-star medical team again, which made me inwardly cringe at the reminder of my rookie status yet again. He then quickly took my hand and said, “If I could do it all over again, I would have chosen you from the beginning and not those other guys.” ν
DISCLOSURE: Dr. Weathers has received institutional research funding from Genentech and Mundipharma. Dr. Epner reported no conflicts of interest.
At the time this article was published in the Journal of Clinical Oncology, Drs. Weathers and Epner were practicing at The University of Texas MD Anderson Cancer Center, Houston.