Philadelphia Inquirer

Online, on the mend

Web journals and support groups are giving seriously ill people emotional outlets that are as important as medical treatment.

By Manasee Wagh

December 25, 2006

The night before his biopsy, Kevin Rakszawski started hunting for the stuff his doctor couldn't tell him - what it really feels like to have cancer.

A survivor's online diary caught his eye.

"It calmed me down a lot," says Rakszawski, 20. "I didn't really know what to expect, and by reading this, it gave me reassurance that other people were going through the same thing."

Instead of continuing his bioengineering studies as a sophomore at the University of Pennsylvania, he moved back in with his family in Bucks County to battle Hodgkin's disease.

Starting that night in early fall of 2005 and nearly every night during treatment, Rakszawski (pronounced rak-SOW-ski) sat down at the computer and tapped out an account of his life with cancer. Readers may find the journal riveting - stories about his everyday life and feelings mixed with honest, detailed descriptions of everything from treatment and side effects to a health insurer's mistakes.

For Rakszawski, using the journal to track his procedures and put his thoughts into perspective began to bring back a sense of control.

"I was part of the treatment team and was more involved," he says.

Online journals, blogs and exploding numbers of discussion boards offer a kind of intimate yet informal support and communication that patients crave and physicians are rarely able to provide.

While health topics have always been among the top searches on the Web, virtual support groups go well beyond the gathering of information. They form unprecedented networks of connection, news and potentially life-saving details.

Communicating directly with others who share their experiences of disease, researchers say, significantly improves quality of life for many cancer patients who otherwise may be depressed and confused. It can give them the will to live.

"Laughter. I can't say enough about it. We try to laugh every day," David Stelmach posted to a popular forum on the Leukemia and Lymphoma Society's Web site. "I know it's hard but you've got to try."

Stelmach, now recovered from blood cancer, reached out again and again from his home in Duarte, Calif., where he sells real estate. Stelmach wrote 14 pages about his own experiences and methods of coping with mantle cell lymphoma, and he frequently engaged in dialogue with other cancer patients.

"The unknown is the scariest part," he said in an interview.

Indeed, when Sam Johnson was diagnosed with leukemia 21/2 years ago, his parents wondered how the family could deal with high school, preparing for college, and all the other teenage issues, plus the additional burden of cancer. Whom could they ask?

"There aren't too many people who understand what people like us go through," says Sam's father, Doug, a lawyer in Haddonfield. He goes on the leukemia society's discussion boards several times a week to vent, share experiences with other parents, and discuss medical advances and side effects.

"It's an extra support system of people who can relate more closely with what you're going through," he says, adding that bad news has you "freaking out about so many things, whether it's an allergic reaction to some drugs, or your child's losing weight, whatever. Participating helps you realize you're not crazy."

Brant Burleson studies face-to-face social communication at Purdue University. The same principles hold true for online interaction, he says.

"It's all about feeling comfortable describing one's insights and perspectives of what's happening in a traumatic situation."

Writing your thoughts down is even better than saying what you feel out loud, he says, because it forces you to organize a confused jumble of emotions and insights. Online, you can write and respond to the "group" at your leisure.

Of course, all the caveats about Web communications in general apply to support settings as well. Captivating personal sites are built around one person's experience. The most popular pages - Yahoo! Health has 650 message boards on cancer alone, up from 280 three years ago - cannot possibly be monitored for accuracy.

From his parents' home in Warminster, Rakszawski used discussion boards at Yahoo! Health and the Leukemia and Lymphoma Society to seek treatment information and answer others' questions.

"You have to be careful," he says of what's shared on the boards. "You would rely on your doctor for facts. But you can't just rely on your doctor to tell you all the options."

Sunita Nasta, Rakszawski's oncologist at the Hospital of the University of Pennsylvania, believes that joining an online or traditional support group empowers patients. Groups that are under a medical organization's umbrella, she says, have appropriate online links.

Rakszawski's quintessentially personal health site has attracted about 25,000 visitors in a little over a year. "I get five to 10 e-mails about my Web page every week," Rakszawski said from his dorm at Penn, where he was back pursuing bioengineering this fall.

It's not hard to see why. The day his doctor said he might have beaten his cancer, Rakszawski turned on his computer and wrote this in his journal:

"It is important to just take everything one day at a time and not dwell on your worries. The rest of my life could be spent worrying about a recurrence, but I won't live that way. I choose not to dwell on that, but rather think positively that this cancer is in the past for good. - June 26, 2006"