Wednesday, February 20, 2008

Our cancer journal is e-published!

I'm so happy to announce that my community's CaringBridge cancer journal has been published online, for anyone to download (free) or read online. Laugh, Sing and Eat Like a Pig: My Year of Living Cancerously now has an official home on the ACOR web site.

Please spread the word about this book. I ain't in it for the money - I'm in it because 4,000 people a day (in the US alone) discover they have cancer, and face that moment of "What on earth do I do NOW??" I know that feeling very well. Some look for what to do next; others don't even think they can do anything — they just think they're screwed and go into depression.

My intention in publishing this is to demonstrate to both groups that they have a lot to say (and do, and be) about how they face their situation, no matter what the outcome. People who participated in the journal year captured in this book say they were inspired and empowered by the experience, so we're sharing it.

The title is impish and bratty, intentionally so. :) It's the approach I chose to take to the news that I had a lethal cancer - a summary of the advice I got in the first few weeks after diagnosis, before the online journal began. "Laugh" is for the healing power of laughter, as famously discussed by Saturday Review editor Norman Cousins in his book Anatomy of an Illness; "sing" is the advice my doctor gave ("you don't want to stop doing life activities that you love - it sends the wrong message"); and "eat like a pig" was a diet the hospital sent me, to increase my caloric intake, to combat weight loss and prepare for the battle ahead.

Admittedly, "laugh, sing and eat like a pig" is not a conventional approach to a deadly diagnosis. But that's kind of the whole point. And the whole story is true, every word.

It starts with news of the diagnosis, and planning our approach; discovering the phenomenally valuable cancer communities on; starting the online journal; readjusting life to deal with the pain that arose when the cancer ate away at my thigh bone (eventually breaking it); numerous posts from the "department of transportation," learning to get around by crutches, walker, wheelchair and motorized scooter; extraordinary surgery to completely remove the primary tumor, which had already attached itself firmly to the bowel and a muscle on my spine; learning the uncertainties of the severe immune treatment that we selected to then attack the metastasized lesions from skull to lungs to ulna to thighs; the treatment weeks themselves, including many posts from inside the hospital (it is SO COOL that Beth Israel Deaconess has free wireless!!); the experience of getting MRIs, bone scans, CAT scans and waiting for the "scores"; and all the while dealing with the complications of owning two houses on diminished income, because our Minnesota house hadn't sold yet.

The book has a lot of "e-patient" in it, though I didn't even know the term existed until a few weeks ago (January 2008). See, toward the end of 2007, as my lesions continued to shrink, the question arose, "So what do we do with this year's incredible experience?" When the e-patient discovery was handed to me by my doctor, the answer fell in my lap. So my further hope is that the book will let newly diagnosed people learn about the tremendous resources and choices made available through the e-patient movement.

Please send any comments on the book, pro or con, feedback on clarity or message, anything. The voices of a hundred people are captured in the book; I hope we ultimately touch a million or more. (And don't try to tell me what's realistic and what's not!)

I'll leave you with this, which is the end of the prolog:

At the start of this adventure, I really did not know how many months of life I had left. I did know I was going to do everything in my power, whatever that might be. I also knew that whatever time I had left, I was going to live it like crazy … to laugh, sing, and eat like a pig.

I challenge you to be fully alive, every moment that you have left in life. As you read this book, please listen for how you can face every moment with power and grace, no matter what your circumstance. You have the choice. Be responsible for your own outcomes.

So, how perfect is this? While researching Norman Cousins tonight, I ran across this quote:

"Death is not the greatest loss in life.
The greatest loss is what dies inside us while we live."
Amen. No matter what your situation, no matter what your outcome, my most fervent wish is that you be fully alive for every moment you live. That’s the essence of the story you’re about to read.
The book's location, again, is here.

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