I did not ask for a memoir.
When I sat down to write The Cancer Channel, where I started was with a handbook. A primer. A travel guide of sorts for those on a cancer journey. I started writing this “guidebook for the newly diagnosed” because when I was diagnosed with cancer, I turned where I always turn for information – to books.
I read every book on cancer I could find in the Stanford medical center’s library. I certainly did my best to read what I could of the medical texts, but I found the language too technical and I was slowed in my reading (and stalled in my comprehension) by needing to look up every fourth word. I set those to the side. I picked up some “everything you need to know…” kinds of books written by doctors trying to explain cancer in the simplest of terms. I liked those a ton. I could begin to imagine what was going wrong with my body and what treatments might be recommended to right the malfunction of my cells and get my body back on course.
But while potential side effects were listed next to the treatments by these medical authors, I found myself wondering what the side effects actually felt like. What does nausea from chemotherapy feel like. Is it like a hangover (the closest personal experience I could imagine)? Does everyone lose their hair with chemo? Does it hurt when your hair falls out? What will I look like bald? What does it mean to have dry mouth from radiation? Does drinking water help? Will I need to carry a water bottle with me for the duration of radiation or for the rest of my life? These books, while super helpful to give me an overview of why cancer happens and how it can be treated, didn’t share with me the lived experience of those treatments.
Then there was the very large issue of my emotional state. I was so freaked out by my two cancer diagnoses that I was in a perpetual state of fight or flight. I was pretty convinced that I was going to have a heart attack before either cancer had a chance to kill me. Did other cancer patients experience the same thing? How did they stay sane? What were their tips and tricks for not absolutely losing their minds while trying to save their bodies? I asked the only other woman I knew at the time who had had cancer.
“Oh, I had thyroid cancer. My doctor described it as ‘cancer light.’ Very curable, seldom fatal. I didn’t worry about it.” She told me matter-of-factly.
GAH. No help there.
So, while I went through my cancer treatments, I started writing everything down and created a guidebook I thought could be helpful to those newly diagnosed with cancer. Then I added a chapter at the beginning and a chapter at the end that told a bit about my story in order to give context to the guidebook. It was just about then that I realized I didn’t really know anyone in the publishing industry. How do you publish a book exactly? I asked friends and friends-of-friends and pretty soon I had spoken with half a dozen people in the publishing industry. Their (collective) advice?
“No one is ever going to read a guidebook from a patient. Guidebooks are written by doctors.”
“You will never get selected for publishing by a traditional publishing house. You’re neither famous nor infamous – and those are the books people read. Publishing houses publish the books written by famous people because they are the books that sell.”
“Your ‘voice’ is good. You’re funny. You should write a memoir. People like memoirs.”
A MEMOIR? But I am neither famous nor infamous, remember?
GAH. OK, maybe I can convert some of the guidebook into lived experience stories. I want to be helpful to other cancer patients. Maybe a memoir can be helpful. And hopeful. And funny.
So, I reluctantly set the guidebook to the side and started exploring what it was like to write a memoir. It was a book written in fits and starts with large breaks in between. This included taking the better part of a twelve-month work leave and another two years after that before I picked it up again.
But that wasn’t actually the most challenging part.
Once I had cleared what was now an eight-year hurdle of getting my stories down on paper, I started asking people to read it and give me feedback. I was proud of the stories I had captured. I thought the content of the book was helpful – I thought the stories were often funny – and I was eager to hear from the various close friends I handed it to that it was good.
But they didn’t. They told me I had more work to do.
The feedback I received that had the greatest impact on me was from Sarvenaz Madi – a woman I had worked with at eBay who was diagnosed with breast cancer after I was – and whose breast cancer had come back and metastasized to her brain.
“Your book is funny, Sarah. You’ve always been funny. But it’s not authentic and true. You don’t share the dark moments associated with a cancer diagnosis. The moments when you are on the floor absolutely overwhelmed by this. THAT is what you need to write.”
So I did. I thought about some of my lowest moments and I started to explore exactly how I had felt – in my heart and in my head. I tried to be honest without being overdramatic. I removed stories told simply because they were funny – and found the truer instances where I was at my most vulnerable – and I told those stories. I tried to balance the terror and despair of a cancer diagnosis with the humor of the physical indignities and the hope I kept front-and-center as I walked through the valley of chemotherapy.
Sarvenaz did not read this final version of my book. She died of metastatic breast cancer in 2019, but I so appreciated her (always) honest feedback. She made me (and the book) better.
Writing a memoir is hard. It takes a long time. It is hard to know what stories to tell. It can make you feel naked and vulnerable and, yes, even embarrassed. But I think it is important to tell our stories to one another. Yes – to make one another laugh – but also to share tears. I tried to share stuff openly most never speak of but that might be helpful for patients who want to know. I walked the line between visceral and graphic and hoped I ended up on the right side most of the time.
My greatest hope for this book is that it can be helpful to others who have cancer – and their loved ones – to understand the lived experience of a cancer diagnosis and treatment and (hopefully) come out the other side.
In my next blog I will share a story about the awkwardness of telling people “I’m a writer”…