When The Doctor Becomes The Patient

In August of 2022, I had a biopsy that came back nevoid melanoma–which looks like a regular mole (nevus) and didn’t have the typical ABC features of melanoma–Asymmetry, irregular Borders, Coloration. The second pathologist who reviewed the biopsy started off with, “Thank you for referring this interesting case.” Interesting, I guess because the melanoma cells were not in the dermis, but below. After surgery in October, I found out that the melanoma had spread to two lymph nodes in my left axilla. In November, I met with my oncologist, who said, “I’m going to be your new best friend for the next five years,” and we reviewed options for my stage IIIa melanoma: without further treatment a five-year survival rate of about 80% (relatively good odds if you discount a one in five chance of death) and with adjuvant immunotherapy around a 90% five-year survival. Currently I am NED (No Evident Disease) after surgical excision and sentinel node biopsy.

Cancer

To receive a cancer diagnosis is an existential crisis of the modern age. As a psychiatrist who works in a primary care setting, I have many patients who have cancer, and as a medical student I rotated through surgical oncology at Cook County Hospital and medical oncology at University of Illinois Hospital in Chicago. I’ve seen the effects of cancer. One of the residents I trained with died of melanoma shortly after graduation. A cancer diagnosis puts things quickly into a new perspective. Any talk of the future takes on a new uncertainty. Cancer is a story that takes over any other stories you were telling yourself about your life. And uncertainty about the future is one of the main dilemmas with a new diagnosis of cancer.

Interesting . . .

Interestingly, I didn’t actually feel sick until I started immunotherapy. People said, “I’m sorry you’re sick,” and yet I didn’t feel sick. I was in the liminal space of having been diagnosed with cancer by biopsy, but not having any symptoms.

It’s also interesting to be on the cutting edge of science, but it also reminds me of that saying about the ancient Chinese curse, “May you live in interesting times.” Yeah right. Check.

The word melanoma comes from the Greek melas (black, dark, murky) and -oma (growth). Another interesting thing is that Hippocrates believed that a surplus of black bile was the underlying cause of two conditions: cancer and melancholia. Melaina chole was Greek for “black bile.” As I’ve gone through my cancer journey, I have pondered the relationship between melanoma and melancholy.

In the past, when I was having the prodrome of a flu, I’ve noticed feeling a low mood, easily frustrated, overwhelmed, irritable, and teary. Often, I’ll think, “What’s the matter with me?” and then I’ll get sick the next day and realize – “Oh, I was coming down with the flu.” Cancer itself is an existential crisis, these persistent side effects are getting me down, but maybe there is a bit of biological melancholia with the immune activation of immunotherapy. Interesting.

Mad dash and the marathon of cancer

In his book, “Beating Melanoma” (2011–does not include recent advances in immunotherapy), Dr. Steven Wang describes two phases that the cancer patient traverses: the “mad dash” and the “marathon.” The mad dash phase is the rapidly unfolding movement from symptom to diagnosis, to work-up, to surgery and staging. I also think of this phase as the “heroic phase” where pushing harder and getting things done quicker seems to be the focus. The marathon phase involves longer-term treatments such as immunotherapy. The focus in the marathon phase is not to push oneself, but to pace oneself. The marathon phase is about wisdom and caring for yourself, rather than heroic striving.

Self-care

This takes on a new meaning when you have cancer. I realized how often I’d focused on “getting things done” instead of doing things I loved. I’m making a concerted effort to prioritize things I love. For instance, I hadn’t painted in months, maybe a year even. Why? Busy. Other things to take care of. So, I started painting and drawing at least once a week.

A challenge which I imagine many healthcare professionals experience is a bias toward active self-care―always doing something, as if self-care were just another productivity and performance measure.  I’ve found that sometimes the best way to care for yourself is to do nothing, rest, doze on the sofa, read for pleasure.

Being a doctor while being a patient

“You don’t have to be a doctor to lose your patience,” goes the old joke. Being a patient is hard work. It’s not a job you can leave at work either, it comes home with you. One thing being a patient does―it’s a major blow to your identity as a productive worker. I’ve found that being a patient brings me out of my mind and my to-do list and into my body. What does my body need right now? Not what I think it needs, not what I can give it in a few hours, but what does it need right now―what is the most caring thing I can do for myself at this moment. There is an immediacy of embodiment in being ill.

With immunotherapy I sometimes feel a sense of openness in my mind, as if the constant pressure of to-do lists was de-emphasized and in its place a space of pure being arises. I’m now very good at napping, and it is very enjoyable. I’m good at reading science fiction novels again, which I haven’t taken time for in my pre-illness life.

Maybe part of the problem with medical and healthcare culture is that we live every day as a mad dash when really life is a marathon. Maybe our lives aren’t races at all, fast or long, but rather a walk in the park, taking time to smell the roses. The purpose of life is not to rush to be the first to reach the end, but to enjoy the journey.

Narrative wreckage

I came across the term, “narrative wreckage,” in Arthur W. Frank’s book, “The Wounded Storyteller” and the term fascinated me. Cancer feels like a kind of car crash of a life that was speeding along and I thought I was in the driver’s seat and my tank was filled with gas and I would be driving a long distance. Suddenly, I find myself in not only a physical wreckage of scars, lymphatic cording, fatigue, bruises from IVs and blood draws, I’m also in a narrative wreckage in which I am trying to make sense of the clinical and academic striving of my doctor self and the lower efficiency, lower productivity, malaise of my patient self. Narrative wreckage captures this interruption of the clinical and academic story of ever-increasing excellence, productivity, and performance. Being a patient is an invitation to be human, sometimes all too human as Nietzsche wrote. Being human is something we often don’t have much time for in medicine―I’m finding it meaningful and rewarding even if there is a lot of pain, malaise, and wreckage. I’m hoping to rebuild a narrative out of this wreckage that brings together the best of being a doctor, being a patient, and being a human being.

Ironically, my cancer diagnosis came as I was working on the final editing on my forthcoming book “Caring for Self & Others: Transforming Burnout, Compassion Fatigue, and Soul Loss.” Cancer has made me rethink self-care, shifting from focus on what I need to do to make myself more resilient at work to what I love and enjoy in my life. Maybe, as healthcare professionals, we could make this shift before we have a serious illness.  Couldn’t we change the culture of medicine so that you don’t have to be super-human to get through the day? Could we create a work culture for the human all too humanness of physicians?

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.