Is there beauty in my world?
I have wondered this over the years. My undergraduate degree in philosophy included a course in aesthetics, and since then the question has bubbled up from time to time as I made my way from medical school, to a pediatric residency, to a fellowship in pediatric oncology.
There have been encounters along that road that qualified as awe-inspiring—from the resiliency of children and their families to the relentless pace of scientific advancement, the seemingly endless complexity of tumors, and the innovation of new therapeutic modalities. There are, of course, innumerable encounters that are soulful, desperate, and heart-rending.
But what about beauty?
When I’d think about beauty in medicine, my mind would turn to the microscopic beauty of cancer—from the histology textbooks that captivated me 30 years ago to today’s splendid confocal microscopic images that have been turned into biotechnology pin-up calendars. But in practice, the images in the microscope were most often reduced to being “informative” or “unusual.” Sheets of leukemic blasts, the small round blue cells of sarcoma, the wisps of a pilocytic astrocytoma. They’d warrant a glance. A notation in the chart. Next case, please.
As a second-year pediatric resident, if there was beauty in my world, I was simply too tired to see it. And don’t confuse cute with beauty. Sick kids—even really sick kids—can be cute. But disease isn’t cute. And parents certainly aren’t cute. Parents are terrified and scared for the life of their child. Parents want some element of control. What they don’t want is a second-year resident. And at the time, they certainly did not want me. Between the crushing fatigue, the ever-present fear of making an error, and the constant nagging feeling that I would never know enough, not only was there no beauty, my world was actually getting uglier. There were shameful moments where frustration and fatigue got the best of me and my words hurt the people I was trying to help.
As someone who so desperately wanted to be a doctor, I had lost sight of my best self. I felt that I was failing. I wasn’t the doctor I hoped to be.
Brianna’s mother took this feeling to a new level. The whole team suffered her wrath, and we knew why: Her daughter was dying and there was nothing we could do. She had: The. Worst. Tumor. Ever. A diffuse intrinsic pontine glioma—a bastard of a tumor if there ever was one. Always inoperable. Chemo- and radio-resistant. One hundred percent fatal. A median of eight months survival from diagnosis.
Her fury at the disease, being a single mother left to contend with it, manifested itself daily as seething contempt for all of us on the oncology service. She kept the glass room door closed and the curtains drawn and wouldn’t let the team in for rounds. She wouldn’t even let us examine Brianna—she saw no point. We’d stand outside the closed door discussing the day’s labs and the clinical plan, and we’d beg to come in and talk to her, but she’d refuse. Except when she wanted us to use her own treatment plan. Then, we’d negotiate. Her homemade herbal teas? Fine. Could she skip the steroids and blood pressure medicines? No. Could she give Brianna coffee enemas?
Coffee enemas. We had a week-long debate because she wanted to give daily coffee enemas. My attending had never heard of this and asked me to research it (it’s apparently a thing). He sent me into “the room” to explain to Brianna’s mom why we couldn’t allow her to do this. But because I took her request seriously and presented arguments both for and against, she let me in—literally.
From that day on, until I was off-service, I was the only person allowed in. I would examine Brianna, discuss the treatment plan, and relay it to the team. For a few weeks, I was, exclusively, Brianna’s doctor. But rotations end, and teams change. Soon I was off to the next thing. Neonatal ICU, cardiology, I can’t remember.
A month later, my wife and I were driving home from dinner one Saturday night when my pager sounded. It was a nurse from “The Pavilion”—the corner of the hospital where palliative care patients stay. She thought Brianna was dying and asked me to come in. I wasn’t on-call but sensed I should be there. En route, I called the attending and asked him to meet me because I had never been present for a death, but I knew one of the horrible details of pediatric oncology: children take a long time to die. The strength of their hearts and lungs allow their bodies to fight for a hold onto life.