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Telling stories: our cancer patients as people
Sometime last year, a friend forwarded me a link to a YouTube video called “The Last Lecture,” in which a young professor of computer science at Carnegie Mellon University, Randy Pausch, disclosed to a packed auditorium that he was dying of pancreatic cancer. Pausch’s goal in the ensuing hour, which he accomplished in a professorial style sprinkled with touching but lighthearted anecdotes, was to impart life lessons about chasing and fulfilling childhood dreams.
I get lots of e-mails forwarded to me, as I’m sure many of you do too. Some come with links to pictures or videos — inspirational slide shows, maybe, against a background of Muzak. I delete 95% of these without thinking twice. But after reading the tagline to “The Last Lecture,” I clicked on the YouTube link and remained transfixed for the next hour, eyes glued to my computer screen. My wife subsequently gave me a copy of the follow-up book, which Pausch had dictated to a collaborator over several sessions while riding his bike. I just finished the book on a recent plane flight and was teary by the end. This was really unusual for me.
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When I reflected upon why I was so touched, it wasn’t because Pausch had written about anything terribly new or profound. Instead, I think it was for two reasons: the awful inevitability of metastatic cancer, and the narrative beauty of a life’s story.
A life reduced
When Pausch began his lecture — and when he wrote his book — he still appeared young, fit and in excellent health. He did push-ups on stage. He rode his bike for miles. He drove a convertible with the top down. As an oncologist, I knew that — incomprehensibly and illogically — this outward picture of perfect health would soon be replaced with a body crippled by, and ultimately succumbing to, a terrible disease.
To me, this is one of the most chilling parts of caring for patients with cancer — when someone walks into my office looking well, with just one site of metastatic disease, perhaps, or maybe having recovered from induction chemotherapy for a poor-prognosis leukemia. I want to encourage hope, to think that somehow the odds can be beat, but I know all too often what will come next.
Maybe this is why I grow cynical about expensive new drugs that only modestly prolong survival but never cure because, in my mind, this just isn’t enough. Duane Mitchell, a Duke neurosurgeon, recently wrote that he was inspired when President Barack Obama said on television that he hoped we’d “find a cure for cancer in our lifetime.” Mitchell wrote, it was refreshing to hear the word “cure” brought back into the national discussion, and he felt “inspired and encouraged that someone had thrown that gauntlet out there again.” I can understand why.
So when Pausch began his lecture, full of life and humor, I instinctively knew the eventual end of the story, which made it that much more compelling, though painful, to watch and to read.
Despite the tragic background, I loved every minute of Pausch’s anecdotes and stories. In large part, this was because he was a natural and gifted storyteller and had so much to say. As human beings, we are ingrained to hear and to tell stories as a natural part of how we communicate with one another. There is no greater story than the story of a life — because we can see a little bit of ourselves and appreciate the journeys of others when we hear about these experiences from birth until death — in the joys, sorrows, relationships and continual quest for meaning that mark our passages on earth. I loved hearing about Pausch’s parents, his wife, his children, his students and his career, and I found myself pretending that I was him, living and trying to interpret that same life.
Our patients’ stories
As Pausch wrote in the beginning of his book, he wasn’t trying to tell a story about finding meaning in suffering and illness, or what it was like to be a patient with pancreatic cancer. He was trying to tell a story about his life that he could pass down to his children. This may seem obvious, but a truth we’re often too busy to honor or to recognize: Every single one of our patients with cancer has a life story worth telling too.
It’s tempting to spend our time thinking and reflecting on our patients’ noble struggles with cancer, their valiant battles against this terrible disease. But we forget sometimes that our patients were people with rich and complicated life stories before, and still despite, being patients. I wish that all of the patients I’ve cared for and lost along the way had the opportunity that Pausch had to tell their life stories and to record their hours upon the stage, demonstrating through their narratives that their lives were indeed not at all “full of sound and fury, signifying nothing.”
Having the ability to leave time capsules of themselves for their spouses, children or other loved ones could bring our patients a measure of closure and fulfillment to the unwanted process of dying and could give a world of meaning, for years to come, to those who they must leave behind.
In another life, one without the pressure of writing grants and papers and finding a job (a story for another day), I might have created an organization to do just what I’ve described above — bringing together volunteers with talent in writing, film and photography to allow our cancer patients to tell their stories to their friends, family or anyone else who wanted to listen. Maybe someone has already done this. If so, let me know. And if not, will you take up the challenge for me?
William Wood, MD, is a third year Hematology/Oncology Fellow at the University of North Carolina Chapel Hill and is a member of the HemOnc Today Editorial Board.