Cancer Survivor's Bookshelf (recommended reading for phoenixes and the people who love them)
Sunday, I spoke at a National Cancer Survivor's Day event in Danbury CT, a beautifully organized and well-attended event that was a pure pleasure. Usually, I keynote conferences designed to educate cancer patients, families, onco nurses, social workers, and other care providers. I'm brought in as the proverbial spoonful of sugar that helps the medicine go down; after my morning message, the day is filled with endless statistical lectures, where oncologists attempt to predict the future, and scary PowerPoint pie charts, where survivors sit there willing themselves to cling to the thinning slice of "lived to tell about it." Sunday's event had just one purpose: celebrate life. We came together to relish the fact that whatever happens in the future, we're alive now, and life is beautiful. Which isn't to say that education doesn't happen. Cancer survivors and caregivers quickly learn to network more effectively than college kids planning an off-site kegger. Breakfast was humming with supportive conversation, helpful hints, lots of laughter, and enthusiastic book recommendations.
As I made my way to the coffee area, I was secretly delighted to have my own book recommended to me by no less than half a dozen people. No one ever recognizes me from the author photo, as I'm nine years older and have hair now. (That fabulous bald noggin on the front cover is gorgeous Margaret Baker.) I suppose I should be coy and proper and leave it off this list, but the truth is, I'm proud as hell of this book and gratefully astonished at how people have connected with it. If I do say so myself (and yeah, I do, or I wouldn't have put so much work into it), it's a great book for anyone going through chemo or seeking to understand that experience. It's not a book about cancer, it's a book that reminds people: cancer exists only in the context of a life. Book clubs who've embraced it over the years made me realize it's actually a book about finding joy in whatever refining fire life dishes out.
The first two books I always recommend are Dr. Wendy Harpham's Diagnosis Cancer: Your Guide to the First Months of Healthy Survivorship (now in its third updated edition) and After Cancer: A Guide to Your New Life. Knowledge is power in general, and in this situation, knowledge is survival. Dr. Wendy was a young mother and an internist with a thriving private practice when she was diagnosed with non-Hodgkin's lymphoma almost 20 years ago. Her knowledge of all things cancer is unmatched, intimate, and absolutely up-to-the-minute. Her writing style is compassionate, literate, funny, and wise. These two books take all the unthinkable, terrifying crap you really must know in those first crucial years and deliver the information in an accessible Q&A format. I also direct survivors at all stages to Wendy's "On Healthy Survivorship" blog. (Check out this great post from last Friday: "Can you please shut up?" addresses the crazy-making issue of unwanted advice from the unschooled but well intentioned.)
Newsweek editor Jobathan Alter says Wendy's latest, Only 10 Seconds to Care: Help and Hope for Busy Clinicians, is "extraordinarily useful — not to mention compelling — for patients like me. She has x-ray vision that gets to the core of the doctor-patient relationship. This is a wise and insightful and deftly written book."
Another great book for the newly diagnosed "cancer couple" (an apt phrase I coined just this second) is Breast Cancer Husband: How to Help Your Wife (and Yourself) during Diagnosis, Treatment and Beyond by Marc Silver. The title says it all, and it delivers.
And screw chicken soup, Julia Sweeney delivers a Harvey Wallbanger for the soul with God Said, Ha!, which she did as a one-woman show (which really really should be out on DVD.) It's not about "laughing it off", it's about embracing an experience and laughing through it.
While I have to give it a "seriously dark and heavy" warning label, I really love Joan Didion's Year of Magical Thinking. I know our blah-blah-by-yer-bootstraps culture mandates that we spackle a "positive attitude" over our actual feelings so other people don't have to be made uncomfortable by our suffering, but the darkness of a shattering experience has to be explored for the fullness of the experience to be honored. This book basically wallows in grief, acknowledges the power of loss, and then moves on. Not happily or spunkilly or with a skip in the step, but still standing -- which is a marvel. Like I said, I wouldn't suggest it for infusion days, but this stage version is drastically condensed, much easier to take, and just as powerful.
The revised What to Eat if You Have Cancer: Healing Foods that Boost Your Immune System is a great sidekick, as is Eating Well Through Cancer: Easy Recipes & Recommendations During & After Treatment.
Last but not least is the book I suggest you tuck in your bag on your way to every chemo infusion: Where the Wild Things Are, written and illustrated by Maurice Sendak. (You'll know what I mean, trust me.)
The perfect wrap up for yesterday's event -- the astonishingly good choir from a local high school came up after I spoke and sang this song that wrecks me to tears every time I hear it because it's so dang true and life, which has such music and laughter and good friends and great books in it, is so unbearably sweet.