Cancer blogs become part of treatment

Patients can update loved ones, vent

Two months after learning she had breast cancer, Jennifer Boyd found herself sitting in the back room of a Newbury Street salon, picking out wigs to replace her thick, sandy-brown hair, stolen in bunches by chemotherapy.

She recounts the ordeal, for all the world to read, in a blog.

"When do I buzz it all off? The downside to all this hair is that there is so much more to fall out and get everywhere," she wrote on May 10, 2007. "The woman at the salon where I bought a wig last week said I would know the right time. And I'm still not ready yet."

Boyd is one of a growing number of cancer patients turning to the Internet to discuss their disease, keeping friends and family updated, and connecting with other patients, according to oncology social workers and psychologists. Personal blogs, listservs, and sites like CarePages, CaringBridge, and Breast Cancer Stories give patients an outlet to express the emotional turmoil associat ed with the disease, enabling a virtual catharsis for some.

That was the role blogging played for Robert and Donna Gregory, the Long Island couple who died when the plane ferrying them to Boston for medical treatment crashed last week. Donna Gregory chronicled how leukemia had affected her husband's health and the lives of herself and the couple's twins.

And Leroy Sievers, a former television newsman who died last week of colon cancer, gained an extensive following with a blog and commentaries presented by National Public Radio.

While there hasn't been much research done on the relatively recent phenomenon, patients attest to its many benefits. And two Ohio State University researchers, conducting one of the first studies on cancer patient blogs, said their preliminary findings suggest that online journals indeed help.

"It's definitely not hurting these folks . . . it's a good means to express yourself," said one of the researchers, Jennifer Moreland, who is earning a master's of health communication. "These folks will look back over the last few years and say: 'Look at what I've come through. Hopefully, someone else can read this and survive as well.' "

After analyzing 50 blogs, the researchers found that detailing the rigors of the illness online seemed to help patients cope.

While research on cancer patient blogging may be scant, studies on the healing effects of writing are abundant, said Harriet Berman, a clinical psychologist with the Wellness Community-Greater Boston, a nonprofit that provides support and counseling free to cancer patients and their families. "There's a very empowering process that goes on when cancer becomes something you can write about. It's not just this thing that's invaded you," she said.

But, Berman said, blogging does have its downside. "The danger to the individual, I suppose, is that some people could expose themselves more than they maybe want to," she said. "But I think the danger is more in the potential misinformation" to other patients, who might read the blog before they themselves reach such a point in the course of their illness.

Boyd's husband, Bryan Harter, urged his wife to start a CaringBridge page after hearing about the site at the Dana-Farber Cancer Institute, where he works as an oncology social worker. The sites, which can be password-protected, allow caregivers and patients to give frequent updates without fielding dozens of phone calls, he said, but they also provide the patient with an emotional outlet. "It really causes you, in the midst of having the rug pulled out from under you, to think about what you want to say and what you want people to hear," he said.

Boyd, 37, said she remembers writing and rewriting that wig post.

"The first version was probably my own cathartic dumping out of all my own feelings," said Boyd, of Jamaica Plain. "And I remember realizing . . . I could edit it a little bit and still get out some of those feelings without overwhelming people, but also letting people know it was really tough."

Boyd said she appreciated friends and family - including friends of friends and distant relatives - posting hundreds of notes of support. That's exactly what Christin Gachowski Martin, a Dana-Farber leukemia patient, uses her CaringBridge page for.

"It's been great for me, because when you're sick, it's tough to reach out to your friends individually," said Gachowski Martin, 48, of Clinton, N.Y., whose postings have logged 14,000 hits. "With this, you write one message and people respond with all these really beautiful things - it's really uplifting."

While that connection to loved ones is important, linking into a community of fellow bloggers in similar straits can also be critical, said Tim Cummings, a Wellness Community social worker. "When you get cancer, you've descended into a foreign country where you don't know the language and you don't know how to get around," he said. "And one of the ways you learn to do that is being able to talk to people who are members of this world."

David Hahn, 27, couldn't find those people when he was diagnosed with Hodgkin's lymphoma in July 2005. He Googled Hodgkin's and came upon scientific and medical information, but nothing detailing what he might eventually endure.

"After a while, you become more interested in the experience of the cancer than in the science of the cancer," said Hahn, a professional pianist. "You start to move past what the disease is, and you start to wonder what the disease will be like."

So he created "Chronicle of a Cancer Patient" and started writing, constantly, during his six months of chemotherapy and year of recovery. He did it to help himself, said Hahn, who lives in Norfolk, Va., and "in case there were others out there who wanted to know about the experience of cancer."

One of them turned out to be a childhood friend, Courtney Bugler, diagnosed with breast cancer just months after Hahn completed chemotherapy. He encouraged her to start her own blog, and the former "All My Children" script writer began "Biography of Breast Cancer." In it she leavened her cancer stories with humor, once comparing a nervous breakdown in the shower to "Tori Spelling in a Lifetime movie."

"I realized about four or five months into it that I had become part of this greater blogging community," said Bugler. She continues to be part of that community, not only in her day job with an advocacy group for young breast cancer patients, but in blog posts to new breast cancer patients.

"It's not that I'm stuck in the past and I'm not willing to move on," she said. "I've just come to accept that breast cancer in some way, shape, or form, will always be a part of my everyday life."