By Lisa Park
The library was a place of respite and routine for my uncle Ron. When his wife, my auntie Cora, had recurrent breast cancer, he would volunteer a few hours at the library book sale in-between taking Auntie Cora to rounds of chemotherapy. When Auntie Cora was feeling well, they would read together in arm chairs set parallel to each other in their living room. After Auntie Cora passed away, he volunteered more regularly as part of his weekly routine. He would return home from errands with navel oranges, frozen dinners, and a fresh stack of mystery-thriller books.
On a cold, wet January afternoon two years ago, on one of those days when snow would have been more welcome and reading the only reasonable activity, instead of volunteering at the library, Uncle Ron was in an ICU bed in Ohio. I was miles away, sitting in my parked car in a library parking garage in Virginia, on speaker phone with the medical team, my parents and brother, talking about withdrawing life support from Uncle Ron.
“Is he going to recover?” I heard my parents asking the palliative care attending physician over the speakerphone.
The palliative care physician explained Uncle Ron’s terminal status to us. The words “metastatic pancreatic cancer,” “heart attack,” “blood clot,” and “pressors” reverberated against the unyielding cement columns of the parking garage around me. My parents had traveled from Maryland to Ohio to be at Uncle Ron’s bedside. They sat across from the medical team in what was most likely a gray, windowless conference room. Although I was in another state, the parking garage offered the same aesthetic—gray walls, artificial lighting, no softening of sounds or words. The opposite of a cozy library filled with possibility and adventure.
Many years ago, as a medical student on the surgical oncology team, I knew that a Whipple procedure on the operating schedule could mean an exciting, complicated day-long surgery to remove pancreatic cancer, or one that was done within an hour. “Sometimes,” the surgeon explained to the medical students, “we open up the abdomen and the cancer has spread everywhere. So there is nothing to do but close the abdomen back up.” That was the end of the story, at least the story of heroic medical intervention. Difficult conversations with family about end-of-life care, like the one we were having now, offered an anticlimactic conclusion.
Uncle Ron’s cancer had spread, and he now was unconscious after a heart attack and possible blood clot. In his case, there was no Whipple, no surgery, no life-saving intervention. I knew the ending to his story was drawing near. My brother seemed to step comfortably into the physician role, carefully walking through the conversation as my parents’ translator of medicalese and their trusted guide. I’m used to serving as the trusted guide to my patients, but this time, I was niece to my Uncle Ron first, doctor second.
As my family trudged through the stark questions at hand—Was he “there” anymore? Was he suffering?—I thought about how Uncle Ron had seemed fine, if not a little thin this past Thanksgiving. Our practical, intelligent uncle had not even packed a bag when he drove himself to the ER a week ago.
Maybe our first clue should have been when Uncle Ron didn’t make his trademark family fruitcake a few months ago for Thanksgiving. The fruitcake I loved and defended to my friends had a secret ingredient, the brandy that Uncle Ron poured over the candied brick at two months, one month, then a week until Thanksgiving. “Alcohol bakes out,” we were told as kids. His family, originally from Scotland and settled in West Virginia, was the reason my Chinese-American family had traditional American dishes at Thanksgiving. Never having kids of their own, Auntie Cora and Uncle Ron cared for my brother and me as if we were their own children. Thanksgiving, Christmas, and Easter were celebrated together, our family of four making the cross-state trip to Uncle Ron and Auntie Cora. When I needed to study for medical board exams far from home, I holed up in Uncle Ron and Auntie Cora’s house. When my husband and I became first-time dog owners, Uncle Ron recorded episodes of a dog training show for us. Before we became home owners, he inspected the house. When Auntie Cora died after recurrent cancer, Uncle Ron would come to my parents’ home for Thanksgiving every year. In one treasured photo, Uncle Ron reads a book to my then three-year old son—my son’s face furrowed and focused on the book, his little legs not touching the floor.
Telling my children stories about Uncle Ron is a way for us to remember him. In medicine, one of the most effective ways to teach is through clinical storytelling, or case study: the mystery of a patient’s symptoms and physical exam lead to problem-solving and a satisfying conclusion of diagnosis and treatment. A good physician not only solves the mystery, but learns about her patient’s story—who the patient is as a person, who is important to him, what motivates him. Trained this way to focus on the main character, my patient, and solve the mystery, there was little time for anything else. There was always the next organ system, the next disease, the next patient to take care of. The part of me that identified with the mortality of my patients, that gave space to mourn and reflect, went undeveloped and unnurtured.
What Uncle Ron gave me that day in the library parking garage, was an invitation to come out of the cold garage, into the warm library, his place of respite. In his death, he gave me permission to stop and remember our connected stories.