Late last year, ONCOLOGY hosted a writing contest on Cancer Network, in which we asked our readers to share their personal experiences with delivering bad news. The Editors-in-Chief of the journal—Dr. Nancy E. Davidson, Dr. Nora Janjan, Dr. Julie M. Vose, and Dr. William C. Wood—judged the entries based on whether they provided a clinical lesson; offered perspectives from both the doctor and patient; were eloquently written and descriptive, and would have an impact on a wide audience of oncology professionals. An essay written by Trevor J. Bayliss, MD, was selected as the runner-up winner and is shared below. (The first place winning essay, by Eileen Parkes, MD, PhD, Academic Clinical Lecturer at the Centre for Cancer Research and Cell Biology at Queen’s University Belfast, United Kingdom, was published in the March issue of ONCOLOGY).
Dr. Bayliss is a medical oncologist and hematologist practicing at Berkshire Health Systems in Pittsfield, Massachusetts. At 19 years old he was diagnosed with LGL T-cell leukemia. After emerging from this experience as a patient, he set himself on a dedicated path to becoming an oncologist in order to help others facing serious illness. He is the Director of Integrative Medicine at Berkshire Health Systems where he channels his passion for creating and promoting evidence-based complementary therapies as part of his patients’ treatment and recovery plans. He furthers his mission of inspiring and supporting cancer survivors and providers through his website, TrevorBaylissMD.com. In his free time Dr. Bayliss runs, writes, and tries to keep up with his three boys.
When I first thought of becoming an oncologist, I was in an airplane 30,000 feet in the air, probably somewhere over Iowa, wearing a nasal cannula attached to an oxygen tank. At that moment I was replaying the events that had unfolded in a Seattle cancer center conference room 3 days prior.
As an 18-year-old college freshman I had been struggling with fatigue and, oddly, a steadily protruding abdomen. By the following summer the fatigue was making it hard to get off the couch and I finally presented to my primary doctor. The workup gradually unfolded. I was anemic. My spleen was massively enlarged, thus the protruding abdomen. A bone marrow biopsy was performed with the nurse practitioner standing on a chair for better leverage, while grunting like someone doing arm curls, and commenting between breaths on my “young healthy bones.”
After seeking both a second and third opinion, I finally received the diagnosis: large granular lymphocytic (LGL) T-cell leukemia. The first step was splenectomy. I still remember in the postoperative haze, my strange sense of pride when the seasoned Boston surgeon informed me it was the largest spleen he had removed. A “watch-and-wait” period followed, during which I continued sophomore year of college and began to believe life might return to “normal” again. However, as I entered my junior year, the familiar fatigue crept back, then shortness of breath, followed by comments from well-intentioned peers on my lips looking blue. Finally, on a crisp New England day in the fall I found myself at the top of a single flight of stairs in my dorm, hands on my knees, unable to catch my breath.
With a normal-appearing chest CT, but clearly abnormal pulmonary function test, a lung biopsy was needed. It demonstrated a diffuse infiltration of the clonal leukemic cells, and a liver biopsy for evaluation of abnormal liver function tests showed the same. In an instant the disease that was supposed to be indolent was deemed to be aggressive. The new plan implemented the following week was CHOP chemotherapy (cyclophosphamide, doxorubicin, vincristine, and prednisone)—which, given my age, was to transition directly into an unrelated allogeneic stem cell transplant. We chose Seattle for the transplant, and after I had received several cycles of CHOP at home, my mother and I flew across the country and moved into a small apartment next door to the cancer center. Chemotherapy continued and then was escalated to DHAP (dihydroacetone phosphate). One day, after I had just walked into the cancer center, my vital signs were taken abruptly, and bit of a commotion ensued. An oxygen mask was promptly placed onto my nose. I was directed to wear it around the clock, but I was selective in its use. I toured the transplant unit, the room where I would undergo the total body irradiation procedures. A bone marrow biopsy was repeated, other tests were completed, and 1 week prior to the scheduled transplant date my oncologist called a meeting.