'All this from a machine'

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In my case, the group helped me learn about a then-experimental surgical technique developed by Dr. Steven Curley at the M.D. Anderson Cancer Center in Houston. I flew to Houston and underwent Curley's surgery, which removed all traces of tumor from my liver in December 1998. As of my last trimonthly check up, I remain cancer-free without having had to undergo chemotherapy.

In October 2000, Curley was quoted in a U.S. News & World Report article about a successful new generation of cancer-fighting techniques; because of the help of the LMS group, I found him two years before the general public learned of his existence.

There are similar e-mail lists for about sixty other cancers. All are the offspring of a single group list started three years ago by the not-for-profit Association of Cancer Online Resources, founded by Gilles Frydman, a New York City computer entrepreneur. Frydman's wife was stricken with breast cancer and found information through an e-mail list that helped her avoid a mastectomy.

"I started to look at how cancer patients use the Internet," Frydman said. He found that people with a variety of cancers all seemed to end up on a single, general-cancer e-mail list. "I thought it was outrageous that only people suffering from very common forms, like breast and prostate cancer, got their own specific mailing list. So it seemed to me that what we should do was create a mailing list for every known type of cancer." Today, there are more than 125 e-mail groups, with a total enrollment in the tens of thousands.

"Everyone comes to this support group with no idea of the vast information that is going to be shared with them," said one LMS group member, Cynthia Whitson of LaGrange, Georgia. "We all just come to selfishly help ourselves find the way through the maze of doctors, facilities, treatments, and side effects. We find that we become a part of an emotional movement to collectively find the answer to each one's question."

For many, helping others on the list find answers becomes a way to cope themselves. "I had every intention of getting off the group during this three-month break between treatments while I waited for the next scan date," Whitson said. "But you can't leave it. It becomes a part of your life, just as cancer will forever be a part of your everyday life."

Many members of these rare-cancer communities attest to this sense of involvement--becoming, in the words of Donne's poem, not an island but a "part of the main Ö involved in Mankind."

"The list, for me, has meant longer time here on Earth and incredible satisfaction in trying to help others with LMS," Hetherington said.†"It's a motivator. It gives strength, humor, and sometimes even poetry that uplifts. All this from a machine that I used to see as a beefed-up typewriter and techno-toy for technocrats."

 

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Finding solace in cyberspace

'All this from a machine'

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