The Big C²: Stories from the Chronic Side of Cancer is a collection of essays and interviews with the goal of informing and inspiring people living with cancer and those who still experience the effects of cancer in remission or previously cured. What was the initial idea behind this book, and how did that transform as you were writing it?

As a health and science reporter who openly speaks about living with an active blood cancer for 30 years, I am often asked to write about chronic cancers. I began writing essays with a piece that appeared in The New York Times in 2021 in the middle of a raging pandemic. It was the first time I publicly shared my story. Ever since, I have interviewed and met so many cancer “thrivers” who live with chronic cancer, or the life-long physical and emotional effects of an acute cancer that was treated years earlier. So many common themes emerge in our conversations. At the top of the list is feeling alone and misunderstood.

People constantly hear: “But you look fine,” when in fact they don’t feel fine on the inside. Friends and loved ones don’t understand that their social invitations are turned down because some days fatigue just keeps you in the recliner. They don’t see the anxiety and fear between periodic scans and blood tests. “Will my cancer come back?” “Will my current cancer progress?” “Will I be here to dance at my son’s wedding?” That uncertainty can keep you up at night. And it’s largely invisible.

So as I looked at my essays and interviews accumulating on my laptop, I thought I should put them together in a book. I knew that by sharing other people’s stories and experiences in addition to my own, more people would benefit from knowing they aren’t alone in their challenges.

As I put together an outline, I decided that each chapter would share a very different perspective, each offering a different take-away, hopefully with an aha! moment or two, and a few chuckles. As the project progressed, I added more practical suggestions, for example about how to improve communication between patients, their care partners, and the practitioners on their care team. I added the wisdom of a 30-year care partner, an internationally recognized blood cancer specialist, an end of life doula, and others to round out the diverse voices from the chronic side of cancer. Every time I thought I was done, I added another voice, including one of my favorite chapters added while I was on vacation and thought I was done. I realized my own husband’s story was conspicuously missing. “Love under the English Channel” was written at the beach, from the heart, without a single word change or edit before publishing.

How much research did you undertake for this book, and how much time did it take to put it all together?

The research was a deliberate schedule of interviews over a 4-month period. I then turned each interview into a story, sometimes with my own experiences and thoughts woven in. I spent another 2 months putting it all together, editing and tweaking the copy, having each chapter reviewed by whoever’s story the chapter reflected – for accuracy and comfort since the stories are so personal. It was about 6 months of work, then a few more on final editing and working with the publisher on formatting, book cover designer, pre-launch marketing, etc.

What were some ideas that were important for you to share in this book?

Our scientific advances mean that people are living longer with many cancers. There are different needs and challenges that go along with this, yet our awareness and language around long-term cancer hasn’t kept up. Friends, family and medical professionals can only do a better job of being more understanding and sensitive if we – people living with cancer or its effects – tell them what we experience. Our experiences are different than getting treatment for an acute cancer, being cured and being “done.” Many of us will never get the chance to ring the proverbial bell associated with the end of a cancer journey. Equally disturbing is that when someone is perceived as “cured” and they move on with their life, they can have life-long effects that are not acknowledged or supported.

I set out to write a book that told a different side of cancer, through its many stories from a variety of people of different ages, backgrounds and cancers. Each story is very intentionally inspiring. Each person within the pages is a hero, not just for thriving with a cancer, or for cancer patients, but for doing extraordinary things with their lives that will help others cope and support and live their best lives.

What is one thing that you hope readers take away from The Big C²?

If you or someone you love lives with a chronic cancer or long-term physical or emotional effects of a previously treated cancer, you are not alone in your challenges, frustrations and feelings of being misunderstood. You can be the best advocate for yourself or that loved one by keeping mindful of the need for truthful conversations, planning and the importance of telling our stories.

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