A Cancer Caregiver's Reading List

I lost my first husband to bladder cancer in 2014. Since then, I have become a patient advocate. When he was ill, and subsequently in my advocacy work, I have read many books and articles about bladder cancer in particular and cancer/mortality in general. I have found three, in particular, to be especially powerful. “The Emperor of All Maladies – A Biography of Cancer” by Siddhartha Mukherjee is a fascinating read about our history of trying to cure cancer. “When Breath Becomes Air” by Paul Kalanithi and “The Five Invitations” by Frank Ostaseski are powerful reminders of how to live, whether we are sick or well. I found in them a path for recognizing and appreciating the good in life—regardless of current circumstances.

“The Emperor of All Maladies” – by Siddhartha Mukherjee

This book truly reads like a biography, with cancer as its main character. It zooms out effectively and offers perspective on the frequency of cancer in humans and animals throughout history. But it also zooms in on the people – doctors, researchers, activists – of the last couple of centuries and their quests to cure cancer. It often feels like a novel as the reader is drawn into the stories, the egos, the funding struggles, the feuds, and the results of cancer-related work over the years. It is an intense and serious book yet also compelling and hard to put down.

“When Breath Becomes Air” by Paul Kalanithi

Paul Kalanithi was the chief neurosurgery resident at Stanford University Hospital when, in his 30s, he received a Stage IV lung cancer diagnosis. A lifelong writer, he wrote this lovely memoir during his final year. (He died in 2015.) In it, he explores what it means to live a good life and how best to use his time when he doesn’t know how much time he has left. I first read his writing in a New York Times essay in January 2014 called “How Long Have I Got Left?”

The essay (subsequently included in his memoir) resonated deeply with me because my first husband was dealing with advancing Stage IV bladder cancer and I wondered constantly how long he had left. Paul Kalanithi captured my feelings perfectly with the following paragraph:

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? My oncologist would say only: “I can’t tell you a time. You’ve got to find what matters most to you.”

“The Five Invitations—Discovering What Death Can Teach Us About Living Fully” by Frank Ostaseski

You probably won’t believe me but this is one of the most life-affirming and uplifting books I’ve ever read. Despite being about death, it really is more focused on (as the sub-head promises us) living fully and how to be in the present and enjoy it. Rather than leaving me feeling depressed, I felt appreciative and like I had gained perspective. With a manner both calming and profound, Ostaseski suggests ways in which we might approach our world and our daily life— whether sick or well.

Death is not waiting for us at the end of a long road. Death is always with us, in the marrow of every passing moment. She is the secret teacher hiding in plain sight. She helps us to discover what matters most. And the good news is we don’t have to wait until the end of our lives to realize the wisdom death has to offer us.