Justin Berton, Chronicle Staff Writer
www.sfgate.com

When Dan Rahenkamp learned he might die, he reached for a keyboard.

“Welcome to my blog about my travels down the trail of treatment for my prostate cancer,” wrote Rahenkamp, a middle school teacher in Tampa Bay, Fla., and author of the blog “Any Day Above Ground Is a Good One.”

Rahenkamp, 44, is still a little surprised that he started a Web log after his diagnosis on Oct. 31. He was never much of a writer, he said, nor did he ever record his thoughts in diaries.

“At first it was just to clear my head,” he recalled. “Your mind gets cloudy when you get diagnosed, so you don’t want to forget all the things you’re hearing — and so you start to write them down. … But then it turned into something more.”

Rahenkamp, who now attracts a readership of 40,000, is part of a growing subgroup of bloggers who write about their illnesses. The reasons for creating such blogs vary — from the need to efficiently update family and friends about one’s health to the desire to share stories about medical treatments with fellow sufferers. But for many so-called sick bloggers, a primary aim is to achieve an emotional catharsis by writing and disseminating their thoughts online.

Arthur W. Frank, a sociology professor at University of Calgary who has studied the history of “illness narratives” and has written a book titled “Wounded Storytellers,” says the instinct to share one’s sickness is an age-old tradition but one that is being recast because of the Internet.

“In this case, the medium really is the message,” Frank said. “The Internet is a support group available 24 hours, at your convenience, from all parts of the world. You can stay up late at night and find that one other person in the whole world who has the same exact rare form of cancer as you — and imagine how moving that feels when you find that person.”

Last week, two Web sites, carepages.com and caringbridge.org, which host more formal “patient pages” through hospitals, reported a combined increase from 46,000 personal sites to 95,000 in the past year. Unlike sick blogs, patient pages are monitored by Webmasters, but most serve the same purpose as their blogging counterparts: to publicly chronicle ailments.

Derek Gordon, marketing director of the San Francisco-based blog search engine Technorati.com, said the total number of patient blogs is impossible to determine. But the blogosphere, he said, has doubled every six months for two years and is up to 43 million sites, including bloggers who self-identify their sites with keywords as “illness” or “survivor.”

“You could call it a new grief ritual,” said Victoria Pitts, an assistant sociology professor at City University of New York, who authored a 2004 study about breast cancer patients inspired to start personal Web sites. “These people have created a new personal narrative to their illness, which goes beyond the health protocols they might have found on WebMD. … But whether it’s helping their recovery is still speculative. It’s certainly transformed it.”

That transformation is being experienced by bloggers such as Jeannette Vagnozzi, a 41-year-old resident of La Verne (Los Angeles County), who writes about her breast cancer on 2hands.blogspot .com.

Vagnozzi set up her site seven days after she received her diagnosis. Initially, she had turned to the Internet in a frantic hunt for information about her ailment. Then, like many cancer bloggers, she felt frustrated by a lack of reliable medical information sites. And she was inundated by well-intentioned friends and family members inquiring about her condition. In the frenzy, Vagnozzi posted her blog to satisfy the influx of personal queries and to create an info-portal for other cancer patients.

“It gets hard to tell your story over and over again,” Vagnozzi said. “It was easier for me to say to people, ‘Log on, and see where I’m at.’ ”

Vagnozzi asks her mother to do the same. While the administrator and part-time college instructor is comfortable with the thought of perfect strangers reading about her darkest fears, she still finds herself unable to speak frankly with her 85-year-old mother, Anna, whose own health is failing. Yet on Vagnozzi’s blog, and through the process of writing, she feels a responsibility to be painfully honest; her mother reads her entries, and that opens the door for a conversation.

“It’s important for her,” Vagnozzi said, “to know the whole story, and if she didn’t read it, she wouldn’t get it. … It’s important for me, too.”

In the late 1990s, just as the Internet reached mainstream usage, sociologist Frank was one of the first to predict that a “new patient” would emerge from the era, one who researched his or her ailments in the comfort of home, then challenged a doctor with the newly acquired knowledge. Sick blogs and patient pages are evidence that that moment has arrived, Frank said, a sign that the new patient has gained an unprecedented sense of empowerment from his online community. In turn, he said, it also has created a new tension between patients and physicians.

“What doctor likes being confronted by a patient who’s been up all night canvassing the Internet?” Frank asked.

Peter M. Warren, a spokesman for the California Medical Association, said the group supports online networking among patients, yet with caution. “It’s always a good thing when patients find support and good information in their virtual communities, such as blogs,” Warren said. “The only possible downside is when they find misinformation — usually from questionable sites that are trying to profit from their anxieties by offering the latest speculation (on cures) — and then use that to confront their physician.”

Bloggers such as Rahenkamp are eager to report the tension between patients and doctors about Internet usage. In one entry, Rahenkamp quoted his doctor as mocking him with the tune, “Look at you there with your notes and Internet printouts. / You must know more than I. / Tell me, is he going to live or is he going to die?” Wrote Rahenkamp in his blog: “We are in shock how could someone especially a Doctor giving someone some of the worst information they will receive in their life act like that? What an insensitive jerk.”

In contrast, patient pages organized by sites like carepages.com and caring bridge.org are monitored so that commentary that could be considered libelous is not made public. “If someone has a problem with a nurse,” said Sona Mehring, founder and executive director of caringbridge.org, “we try to keep an eye on that kind of stuff. The service is really for letting family and friends know how you’re coming along.”

Six months ago, Sequoia Hospital in Redwood City was the first Bay Area hospital to offer its patients accounts on carepages.com, said spokeswoman Joanie Cavanaugh. The hospital is installing Wi-Fi in the lobby and cafeteria areas, as well as computer kiosks on patient floors. Rahenkamp, who updates out of his home, recently got some good news after his last phase of treatment. “It’s looking like it’s going to work out,” he said.

Yet his blog remains. He notices some visitors peruse his site up to two hours at a time, which he takes as a sign that sick blogs are useful, and not just to those writing them. He recalls when he started his own site it was an optimistic moment — a sense of connecting with others. As the months went by, he had accrued a wealth of blog-friends, the precise connections he’d sought out. In recent weeks, some of those friends have died.

“You have this added aspect of blogging that’s not apparent when you start one of these,” Rahenkamp said. “It’s a pain you get — ‘Oh, my gosh, this person just died’ — and you sort of realize you never met them. Not in person, at least.”
see original