From the Author
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 I even started my journal:
* "Laugh" is for the healing power of laughter, as famously discussed by Saturday Review editor Norman Cousins in his book Anatomy of an Illness as Perceived by the Patient
* "Sing" is the advice my doctor gave. I had asked if I should drop out of my much-loved championship chorus to save energy, but he said, "You don't want to stop doing life activities that you love - it sends the wrong message." Wow. So, okay, laugh and sing! Not bad.
* "Eat like a pig" refers to the diet the hospital sent me, to increase my caloric intake, to combat weight loss and prepare for the battle ahead.
In my online community I told people "If I ever write a book about this, that's what I'll call it." And here we are.
Admittedly, that's not a conventional approach to a deadly disease. But that's the point. And the whole story's true.
== Why a book with this message? ==
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. 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. This book is about hope, getting it in gear, and going "e." (E-patients are "empowered, engaged, equipped, enabled, and educated.")
== What's the vision? ==
I'm committed to a world where healthcare works better - and not just for patients but for the people whose work is to deliver care. I agree with the words of Charlie Safran MD, who said patients are "the most under-utilized resource" in health IT, and I think it applies to all of healthcare.
Healthcare today has unprecedented challenges. Let patients help.
From the Back Cover
With those words Dave deBronkart began an unwanted odyssey: he had metastatic kidney cancer, spread silently throughout his body. Online, he read that his median survival time was 24 weeks.
Laugh, Sing and Eat Like a Pig is Dave's story in his own words: excerpts from his cancer journal and later writings as he discovered the e-patient movement - "Empowered, Engaged, Equipped, Enabled" - and became its best-known blogger, speaker, and government policy advisor.
The true story of "e-Patient Dave" will inspire you and fill you with a sense that a new world is beginning, a world in which empowered patients partner with medical professionals, to truly help heal healthcare.
About the Author
== "What's an e-Patient?" ==
A year after the diagnosis Dave was invited by his primary physician, Dr. Danny Sands, to join the annual retreat of the e-Patient Scholars Working Group. Founded by the late Tom Ferguson MD, a true visionary, the group consists of pioneers, both medical and lay, who have been quietly (and not so quietly) altering the balance of power in healthcare, demonstrating that as the internet brings patients together with information and with each other, a new world of Participatory Medicine is evolving, in which patients become potent agents in creating and managing their own health, in partnership with physicians.
Tom Ferguson said e-patients are empowered, engaged, equipped and enabled. Dave immediately saw himself as a match, became an active blogger on e-patients.net, and took on educating himself as much as he could. He went part-time in his day job in 2009, and left industry entirely in 2010 to devote himself full-time to healthcare.
"This is the first time in my life I've felt I have a calling," says Dave, "something I can't get away from: it's what I need to do. I've had plenty of fulfilling jobs in a great career, but not a calling. This is it."
Excerpt. © Reprinted by permission. All rights reserved.
On January 2, 2007, a routine shoulder x-ray showed a mass in a nearby part of my lung.
The next day the doc called and said the shoulder would be fine, but they had found a spot on my lung, and I should come back in for a CT scan. They didn't know what it was, he said - "could be a fungus for all we know."
The next week he called and said it was a tumor, and there were "lots of them." I later learned "lots" meant five - but in assessing the prognosis, there are two conditions that matter: either you have one or none, or you have more than that, which worsens the prognosis. So five is "lots," for that purpose.
Apparently they were in both lungs. (I keep thinking how lucky I am to have no symptoms!) He said they did look like cancer but not lung cancer - something blood-borne from somewhere else. Next step: get an abdominal ultrasound. Thursday 1/11 my wife Ginny came along (she's watched ultrasounds as a vet) and we saw it: a darker mass in the right kidney. A CT scan that night confirmed it.
That night was hell. My online research said that the median survival time for metastasized kidney cancer, with my prognostic factors, is 5.5 months. Never see another Christmas? Maybe not even see summer??
I later learned that's a very misleading statistic, based mostly on data collected when treatments were not as effective. But that night I didn't know it. I awoke at 1 AM, and could not get back to sleep - I was possessed by the implications.
I continued losing weight, slowly, and lost appetite.(I like to say "My doctor prescribed ACOR," because he literally wrote it on a slip of paper and handed it to me.) I learned a lot from patients and caregivers who are very actively involved in the latest info, and I got empowered to get my buns in gear, learning and getting in action.
* * *
From here on, almost all of this book is based on entries I posted online. Initially, these were made in CaringBridge, a free service which allows patients to keep their loved ones up to date on their medical condition. Later, I started a blog of my own and posted material there.