“Laugh, Sing and Eat Like a Pig”
A downloadable book about my
year of living cancerously with computers
Dave deBronkart, aka e-Patient Dave
A journal of one
e-patient’s successful year fighting a cancer that had bad odds,
using strong online communities and empowered partnerships with
terrific healthcare providers.
Download the full book (1.9MB PDF, 492 pages)
or two
pages per sheet version (1.4MB PDF, 246 pages)
or read excerpts below: Introduction Table of Contents
Introduction
January 30, 2007
On January 2, a routine shoulder x-ray showed a mass in a nearby part of my lung. Four weeks later, it appears to be kidney cancer that’s spread to both lungs. This site will chronicle the learning and emotional processes we’re going through as we learn and do everything we can to maximize my chances. Top of the list: a strong mental attitude and a clear mind!
That shoulder x-ray was just four weeks ago. The next day the doc called and said 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’s a tumor, and there are “lots of them.” I later learned “lots” meant five—but in assessing the prognosis, there are two conditions that matter: either ya got one or none, or ya got more than one, which worsens the prognosis. So five is “lots,” for that purpose.
They’re in both lungs. (I keep thinking how lucky I am to
have no symptoms!) He said they do look like cancer but not lung
cancer—something bloodborne from somewhere else. Next step: get an abdominal
ultrasound. Thursday 1/11 Ginny came along (she’s
watched ultrasounds as a vet) and we saw it: a darker mass in the right kidney.
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. (See Stephen Jay Gould’s famous article The Median Isn’t the Message.) 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.
After the shock passed, a major turnaround happened when my MD referred me to an excellent online email community, the kidney cancer list at www.ACOR.org. 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.
This book is the transcript of this amazing year. Although I didn’t know about the e‑patient principles at the time, the story includes many examples of those principles in use.
Prolog: The Preceding Four Weeks (and where the title came from)
Introduction: The “My Story” Page
Chapter 1 Months 1 and 2: Getting to Know Our Trip
Chapter 2 Whose Cancer Is It, Anyway?
Chapter 3 Surgery and Recovery
Chapter 4 “I’m a Go for HDIL-2”
Chapter 5 “I am glad to field your questions.”
Chapter 6 HDIL-2, Week 1: April 2-9
Chapter 7 Home for Recovery from Week 1
Chapter 8 Week 2: April 17-22
Chapter 9 “My Butt Hurts”: The Perils of Non-Foot Transportation
Chapter 10 You’re going to be on stage? Break a leg!
Chapter 11 Planning Ahead: What’s Your “Drop Dead Date”?
Chapter 12 Creating a Game Worth Playing: Are You In?
Chapter 13 Round 2, Week 1: July 3-10
Chapter 14 End of Treatments: Round 2, Week 2, July 16-23
Chapter 15 Next: Wait and See (aka Back to Work)
Chapter 16 “I don’t think I’ve ever seen ‘massively reduced’ in a radiology report.”
Chapter 17 Resistance is Futile
Chapter 18 Creating What’s Next, Part I: Speaking out in the care community
Chapter 19 Creating What’s Next, Part II: The PatientDave Blog
Chapter 20 Declaring the Year Complete
Appendix: History of lesions