The subject line of the email was direct: “will go on new med…ibrutinib no longer working…I am FINE and feeling uplifted.”
After reading this email, I immediately called Trish and asked how she was doing with the news. She recited the results of her recent lab tests and rattled off the name of a new medication. Her treatment would be followed by a brief planned hospitalization for observation. This fact alone surprised and amused her.
“The team couldn’t believe I had never been hospitalized for leukemia,” Trish announced. After living with leukemia for more than 30 years, this was going to be her first experience with the cancer ward.
“How are you doing?” I asked again, adding emphasis.
“I am FINE,” she said, slowly and deliberately. “I feel loved and supported…but…I’m worried about what will come next.”
Was this the beginning of the end? What if this new treatment didn’t work? What then? We settled into an old, familiar pattern of thinking aloud and discussing various possible outcomes. We didn’t solve the problem, but we both felt better.
Trish was one of my first patients. I was fresh out of specialty training in hematology and oncology, and Trish chose me as her doctor. Together we embarked on the long journey of managing an incurable illness. There were good years, when her leukemia was indolent and watchful waiting was the best approach. When the disease was stable, we had the luxury of talking about life, poetry, and travel during our routine clinic visits. Trish was fearless. She accepted her illness at age 49 and had decided to live her days as fully as possible and with confidence. Her mother had lived with the same disease for a couple of years before she passed at the age of 82.
Trish taught me about coping with adversity and illness. It is absolutely true that oncologists learn about life, grief, and loss from their patients, and Trish has been my best teacher. I saw her move past the shock of receiving bad news time and time again. I watched her arrive at a state of peaceful, comfortable acceptance of what could not be changed. It was a state coupled with the determination to do whatever was necessary to keep on living as well as possible.
In the early 1990s, we made 1 of our first decisions together. Trish enrolled in a clinical trial testing a new medication for her type of leukemia. She embraced this challenge and opportunity, even though it meant traveling from Boston to San Diego twice to receive the treatment. The photos she shared from her treatment are etched into my memory. I’ll never forget Trish’s smile as she hiked in the gardens surrounding the hospital attached to IV tubing. Just thinking about her spunk still makes me smile.
We celebrated her 60th and 70th birthdays together, but she spent her 80th in a hospital in Crete undergoing (unplanned) treatment for pneumonia. Looking back at our relationship, I am struck by how easy it was for us to talk about anything and everything from the start, whether that involved sorting through treatment options, clarifying goals and expectations, or exchanging points of view. Yet, we were always focused on finding a way forward. Doctor and patient looked more like 2 friends having serious existential discussions over tea. Trish never expected to live forever. Perhaps this is just who she is, or perhaps it is a result of living more than a third of her life with an incurable illness. Whatever the reason why, Trish conveys a special radiance that is inspiring and contagious.
A few years ago, we transferred Trish’s care to a colleague who specializes in chronic leukemia. I am now a peripheral figure in her medical team, having shifted from doctor to friend. Yet I still find myself wanting to help comfort or guide Trish when she faces a crisis and the future looks uncertain.
Last Tuesday, I visited Trish in her sunny Cambridge apartment. She brewed me a strong cup of tea and updated me on her medical condition, described some new poems she’d discovered, and told me about her plans for an upcoming trip in the fall. As I was leaving, Trish pressed a copy of Jorie Graham’s Fast into my hands.
“Mark it up, write all over it, and ask questions,” she said.
I left feeling joyful. Looking back on our long partnership and friendship, I think our mutual comfort is not due to shared heritage or even common interests. It’s the result of years of cultivating mutual trust and finding ways to celebrate the joys of living, even when life is lived in the shadow of an incurable illness.