Last Saturday evening I was on the admitting team in Orange County. We got a call about a hematology/oncology admission that we would later pass off to another team in the morning. We were told “fever with an ANC <500.” That admit, was Ronaldo, a young male with acute lymphocytic leukemia. I went to see Ronaldo with my intern and as we started asking him the standard admission questions, he was quick to respond and knew what we were looking for. He offered up the information before we even got around to asking him about his presentation. I noticed how routine this was for him. He recounted the medications he was on, led us through the exam and special things to look for in an oncology patient, opened his mouth wide for a thorough exam and explained the chemotherapy side effects. His mom, Rosa, was by his side the entire time, chiming in occasionally.
While it did not seem pertinent at the moment to ask him about his illness other than the current fever, I deviated while my intern was fiddling with the computer. I asked Ronaldo about the day he was diagnosed with acute B-cell lymphocytic leukemia (B-ALL). He said that it started when he was in his teens. He walked me through to the date of his bone marrow transplant, and what led him to where he was the Saturday I met him. I sat listening to him and tried to figure out where I was on those dates. When he was first diagnosed, I was starting college after my family moved to a new area. When he had his transplant, I had lost my two grandparents and was home on winter break from college, babysitting my little sister and dogs, skiing and waiting to get my first medical school acceptance letter that week. Later, I thought long and hard about all of the times my parents have told me to be grateful for each day because “someone always has it worse than you.” Ronaldo is close to my age, and yet on those dates above, he had it far worse.
Ronaldo knew all of the major dates of his illness and had already experienced three remissions, with the most recent one ending about a month ago. He told me how, before his diagnosis, he had felt unusually tired when he was playing soccer and how he had a couple of bruises he explained away to rough play. He described how he presented to the emergency department with a prolonged nose bleed and had the life-changing moment when a “shitty doctor” walked in and told him, “Yeah, it’s not just a nosebleed, look at your labs, you have cancer.”
I finished up with my intern at this point in our conversation and went on to see other patients and write notes. During my shift I thought about Ronaldo and his mom. They were pulled from a baptism celebration by this fever earlier on in the day. Ronaldo had just become a godfather and had to miss the festivities for this illness and potentially dangerous fever. Not only was he missing out on a big celebration that evening because he was sick, but he was also isolated in the hospital under infectious precautions and looked sad and bored.
After my shift — around 9 p.m. — I asked my senior resident and intern if I would be allowed to go back to Ronaldo’s room to chat with him and play board games. I wanted to try to make his night a little better since I knew he was missing fun at home. My senior resident was surprised by my request and said it was absolutely fine to do so. I stopped by the playroom, picked up a selection of board games and paid him a visit. He and his mother welcomed me into the room and he was eager to shut off the television to play Connect 4 with me over and over again for hours. We went back and forth spotting that fourth token slot and winning games. I had nothing else to do that night and neither did he. We joked about how eventful our Saturday night “out” was and how much more fulfilling it had been than all of the parties people our age posted pictures of on social media each weekend.
He told me multiple times throughout the visit: “Please, Viv, don’t forget why you do this. We are all human, every single one of us. Don’t turn into one of those robot doctors who stare at a screen or stop being hopeful.” Ronaldo told me about how he had to leave college with only four semesters left because his illness had recurred. He said he was interested in finishing his degree in kinesiology to become a physical therapist, and bragged about how many great scholarships exist for “cancer kids.” He was also interested in using his free time to learn about automotive things that were way above this writer’s head. He wanted to have children someday. He had also enrolled in a study investigating cancer patients, male fertility and libido.
Most surprisingly, he said he felt great. While we spoke about the future, he asked me about the path to becoming a physician, to which I could not help but wonder what he understood of his prognosis. The most recent targeted drug that had become available to him did not match the newest mutation his leukemic cells carried. His plans for life did not seem to match his own description of his disease course. None of what I knew of his illness matched how well he appeared in person with the exception of a thinned head of hair and a visible cerebral spinal fluid port wound on his frontal area.
When asked about how this unexpected disease affected his daily life, Ronaldo seemed to resent having to leave school to live at home. His mother played a huge role in his wellness: making him all-natural juices daily, helping to cook nutrient-dense meals for him, accompanying him to all of his treatments and hospitalizations and caring for him when he could not do it on his own. He shared that his mother was born into a wealthy family and fell in love with his much poorer father. They had to elope to the United States where Ronaldo and his two older sisters were born.
Ronaldo told me that he learned to be grateful for the days during which he felt well. During his remissions, he lived a mostly normal life and played soccer with his friends, babysat his hyperactive toddler nieces and nephews and watched a lot of documentaries. He told me he never really had the “chemo-brain” people talk about, and only occasionally felt a bit tired or groggy. He did not describe his disease as an awful destruction of his life; he portrayed it as an unfortunate detour. Although, he showed dismay about the incidence of B-ALL in teens and how unlucky he felt to have been one of the 35-40 per million Americans diagnosed each year. He would much rather have won the lottery.
We talked about many topics related to his illness that night. The underlying message he had for me was that what mattered to him was surviving while feeling well enough to enjoy his life. The most important thing he said he looks for in a physician is a doctor that cares about him while caring for him. He felt heartbroken after working with a physician who had lost hope and told him he would likely die within weeks. He said realistic optimism, eye contact and empathy were what he held onto in his relationships with the many doctors he had encountered throughout the last four years. He also valued patient and family education, and attested to the fears the internet can cause a patient.
That evening of Connect 4 with Ronaldo helped me build a rapport with his family. His mother was elated to have had someone visit her son and save him from his quiet isolation. I hope my intention for him to get more out of that evening than I did as a medical student was fulfilled. When I was ready to go home that night I knew I would not return the following day as I was then transitioned into night shifts. I told Ronaldo that I hoped I would not have to see him again because that would signify that his fever had improved and he was home enjoying himself once again. I told him I hoped I would not have to see him for the rest of the rotation because it would mean he was feeling well. He played along, “I hope I never have to see you again Doctor Viv,” the most fulfilling good riddance. His room was empty when I returned on Monday. For the rest of my time in Orange County we never crossed paths. I hope he is somewhere playing soccer and soaking in the last bits of summer sun.
Author’s note: All names and patient details were changed to protect confidentiality.
Contributing Writer
The Geisel School of Medicine at Dartmouth
Vivienne T. Meljen is a fourth-year medical student at the Geisel School of Medicine at Dartmouth ('17) and a graduate of The University of Scranton ('13). She will soon be beginning her residency in Obstetrics and Gynecology at Duke University Medical Center. She is a 2013 Truman Scholar and National Health Service Corps Scholar interested in working with medically underserved populations. Vivienne first learned about Narrative Medicine through an English course in college and is taking strides to begin to share her stories. She takes pride in her education and work as a physician-to-be as well as spending time with her family and enjoying outdoor action sports any time of year and anywhere.
Follow her on Twitter: @StethoscopeOn
