By David Carlson, MS4
As with all writing published on Stories in Medicine, locations and names in this piece have been changed.
21 year old female, T-cell lymphoma, on multiple chemotherapy agents, now presenting with new neurologic problems – slowed speech, shaking in both hands, and right leg shaking that could be suppressed. This is the kind of tragic picture that can affect even people who have studied medicine for years and witnessed many incredible and horrible cases.
For a birthday that people often celebrate by going out on the town for the first time, this young woman spent receiving chemotherapy. In addition to her slowed speech, her mood had been affected too – she was struggling to deal with this information, and her family was too.
I decided to do something I rarely do – my new haircut (thanks Dominic!) exposed my craniotomy scar, so I showed it to them and pulled up the MRI on my phone. “My heart goes out to you, I was diagnosed with a brain tumor almost two years ago and went through a full year of chemo cycles. I know it’s not fun.”
I hoped they would just appreciate the gesture, but her dad immediately said, “that’s so inspirational right there” and I saw his eyes light up. “Thank you for telling us that, Doctor Dave.” I could feel goosebumps underneath my white coat. There’s no amount of medical training that can account for the human element of healthcare – forging a connection with someone through shared understanding of the deeper aspects of how our physical ailments affect us.
He asked me more and I told them – it was brutal, I went through 5 days of chemotherapy every month, and now I’m done with that and back in school. I lost vision in the left side of both eyes, had to relearn to drive, and retake my driver’s test. Just last week, I had passed my driver’s test!
Excitedly, her dad asked me “Can you show that picture to Jay? Take a look at this – he had cancer too, and now he’s right back in med school.” She saw the picture, and in her soft, trembling voice, said “wow, that’s big.”
As the visit went on, the dad felt comfortable asking me more questions. He wanted to look at the MRI of her head, hear more about the pathways that were being affected and about how the treatments were supposed to work.
That same visit, she uttered “well, maybe I can get better.” That moment of hope and optimism stuck with me: Research has shown that optimism, resilience, and social engagement are all associated with improved outcomes in people facing serious illnesses. This is something we’ve long believed – proliferated through anecdotes and folk tales – but we have only recently begun to quantify this connection scientifically.
Despite this increasing knowledge, it is harmful and difficult to talk about cancer patients needing to find the will to survive. Surviving cancer is a far more brutal task than that. Your body is being harmed by your own cells, and the only ways to appropriately treat most cancers are through surgery, chemotherapy and radiation – all designed to remove or kill specific cell lines, but none completely efficient at this task. You lose some of your “good” cells, and the body responds as it would to any other major assault: with fatigue, nausea, hair loss, weight changes, and other losses specific to the type of treatment.
So there’s the physical stress and pain, the derailment of the “onward trajectory” of life that we all assume we’ll maintain, and the additional aspect of dealing with loss:
- Loss of cash due to treatment costs
- Loss of productive time – months to years of suffering, treatment, and follow-up
- The loss (initially) of a sense of hope and well-being, which are battling the multi-headed giant of fear, sadness, uncertainty, anxiety, and having to rely on others (possibly parents), which raises myriad issues we thought we’d outgrown.
Over the next days, I continued to round on my group of patients but found myself spending a bit more of my “down time” with this young woman and her parents (one of whom was always present).
I spoke with her and reflected on the wisdom I had gained from battling cancer myself.
I talked about being amazed by the people who came around to offer support – many whom I hadn’t seen in years or had only met briefly, students I had taught or tutored before medical school who recalled the impact I had on them, high school friends who thanked me for small gestures of kindness during those tender years over a decade ago, and friends of friends who knew someone else fighting this fight and wanted to share goodwill and support.
I shared how it reminded me of the importance of people and human connection. So often we get caught up chasing goals and tasks, and forget to cherish those rare moments in time when we share part of our finite life-span enjoying the company of others who are also grateful to spend some time with us. I don’t know for sure, but I can’t imagine on my deathbed remembering chance encounters with celebrities, but instead the timeless joy of connecting with friends and family.
We will all die with items in our to-do list and bucket lists, but I don’t believe that’s what matters most. I remember a time before learning mine was a lower-grade brain tumor (and thus gave me a much better prognosis) when I thought about life and was most grateful for good times spent with family and friends. And luckily I have a second chance at life, with that new level of awareness, a still-long projected life span, and the understanding it could all end tomorrow.
After discussing many options with Jay and her family, we went ahead with a treatment plan and she went home, to follow up in two weeks to gauge her response. She was still quite tired and tremulous, but had a slightly more optimistic outlook.
Unfortunately, I rotated off of that service before the follow-up appointment and didn’t get to follow up with them. But I’ll never forget those moments of hope and connection with this horrifically grief-stricken young woman and her family.
I’ll remember those mornings and afternoons in a cold hospital room when, as the med student – not the resident or attending physician – I became the person who could offer an extraordinarily important type of therapeutic treatment that no or few others in our 3.3-million-person county could offer. And where a struggling young woman, ten years my junior, and who had tragically lost most of the physical gifts we take for granted, gave me the greatest gifts of all – the chance to connect and bond with another person, the chance to process my thoughts and learn from a patient for whom I was providing medical care, and the feeling that I was maturing from a medical student trainee into a doctor and a healer.
I will always cherish those times when, in a busy and sterile hospital environment, a group of humans gathered together to help each other deal with the challenges of this gift called life. Thank you, Jay.
David Carlson is a fourth year medical student at UC San Diego School of Medicine. He is one of 19 students nominated by his peers to the Gold Humanism Honor Society’s class of 2019.