The Power of Cancer Stories

When my first husband Ahmad was diagnosed with metastatic bladder cancer, I started to read and learn everything I could about the disease. At that time, in 2013, there weren’t many treatment options (no immunotherapy drugs were approved yet) and there wasn’t much support for bladder cancer patients specifically.

I came to realize there wasn’t much support for metastatic cancer patients overall.

Reading stories by cancer patients

And this led me to start reading writing by cancer patients. Life with a terminally-ill spouse can be incredibly isolating. I yearned to talk to people who had been down this path. And if I couldn’t talk to them, I could connect or relate to their experiences by reading their words.

I first felt the power these stories convey when I read a New York Times Opinion piece on January 24, 2014 titled “How Long Have I Got Left?” by Paul Kalanithi. Ahmad and I lived in San Francisco but had previously lived in Palo Alto (in Silicon Valley). Ahmad had a surgery and treatment at Stanford University Medical Center.

A powerful memoir

Paul Kalanithi was the chief resident in neurological surgery at Stanford. He was also diagnosed with metastatic lung cancer in his mid-30s. By the time he wrote this essay, his prognosis was terminal (but in remission) and he was writing a memoir about his experience. (He died in 2015.)

So much in that essay resonated with me and reminded me of the power of the written word and storytelling to connect people across time and space. The paragraphs that most resonated with me was this:

“The path forward would seem obvious, if only I knew how many months or years I had left. Tell me three months, I’d just spend time with family. Tell me one year, I’d have a plan (write that book). Give me 10 years, I’d get back to treating diseases. The pedestrian truth that you live one day at a time didn’t help: What was I supposed to do with that day?...

Face to face with mortality

I began to realize that coming face to face with my own mortality, in a sense, had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.”

He so perfectly captured the dilemma of living with your own (or a family member’s) terminal prognosis. How do you ration your time? How do you pace yourself for this impending tragedy?

How to manage the cancer trajectory

I had struggled in the early days of Ahmad’s prognosis with how to manage the cancer trajectory. The oncologist had estimated a lifespan of anywhere from eight months to three years. If it was eight months, I would take a leave of absence from my job. But if it was three years, well, I couldn’t be away from work for that long. What was the practical solution? Knowing that death is somewhat imminent forces us to reassess our every choice, our every action. It is the healthy who are not tormented by this dilemma.

Validation of our experiences

Reading Paul Kalanithi’s words gave validity to what we were living. That essay became part of one of the first cancer memoirs in recent years, “When Breath Becomes Air.” It went on to become a finalist for the Pulitzer Prize and to be a bestseller.

Depressing as its subject matter sounds, apparently many people are hungry for a meaningful reflection on life, purpose, and mortality. What makes a life worth living and how do navigate that life when you know you are dying?

Reading can be a lifeline

Reading can inspire us and connect us to others in ways no other medium can. It can be a lifeline and a source of validation reminding us that we are not alone when facing cancer. If you feel you haven’t connected with others who understand your experience, find a book by someone who has lived it.

Your cancer story matters and can even help empower others battling bladder cancer.
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