On January 15, 2010, social media pioneer and Stanford visiting lecturer Howard Rheingold was diagnosed with colon cancer. Rather than retreat from the public eye and battle the disease quietly, Rheingold chronicled his reaction to the diagnosis, treatment and recovery on a blog called Howard’s Butt. As illustrated in this brief blog excerpt, Rheingold’s account of his experiences were detailed and honest:
It’s been another rough week. Last night, [my wife] Judy and I spent 9 PM – 4 AM in the Marin General ER because I’ve been spiking mini-fevers above 100.5, which is apparently some kind of threshold. They took blood for cultures to find the cause of the infection, pumped me full of IV antibiotics, and sent me home with oral antibiotics. My white and red blood cells are scary low because the chemo worked, killing off fast-growing cells anywhere in my body. Which means I’m temporarily immunosuppressed. I’ll wear a mask tomorrow and refrain from shaking hands. The medication regime has become complicated. I need to take pain meds every three hours and antibiotics every eight hours, and the anti-diahrreal meds when I just can’t stand the run, scream, squirt routine any more. I can’t eat dairy too soon before or after taking the antibiotics. I take my temperature and chart it. Cancer has become something of a full-time job. I plan to retire from the Cancer biz soon.
Thankfully, he did retire from the “cancer biz” and has been given a clean bill of health. On Sept. 16, he’ll join DiabetesMine editor and founder Amy Tenderich and Paul Wicks, director of research and development at PatientsLikeMe, on a panel tilted “The Networked Patient: Communities of Practice and Participatory Medicine” at the Stanford Summit @ Medicine 2.0.
I recently checked in with Rheingold and asked him about his experiences as an e-patient. His responses follow.
What motivated you to blog about your diagnosis, treatment and recovery?
I have a lot of friends and I wanted to quash rumors and get good information to them right away. Anal cancer is a bit of a taboo so I wanted to get out ahead of anybody’s embarrassment. I had a lot on my plate and I wanted to centralize communications. I have lived a lot of my life openly online and it has worked out for me. I wanted to set an example.
What did you’re health-care providers think about you blogging about your condition and treatment?
I didn’t tell them, but the word got back to my wonderful care providers. They are great people and they were happy about it–I did say in public how much I love them. They did not attempt to influence it.
As a patient what did you gain from publicly discussing you’re condition on the Web?
I received HUGE support from friends and other patients and some extremely useful practical advice about dealing with side effects of treatment.
From your perspective, what value do e-patients add to the evolving health-care landscape?
Not only do we raise awareness, but we can contribute to our care by being well informed when we talk with our doctors.
Regular registration rates end on Aug. 1. To register, visit the conference registration page.
More news about the Medicine 2.0 conference at Stanford is available in the Medicine 2.0 category.
Photo by Joi Ito