Sunday, February 5, 2012

Grant will update Peer-to-Peer Network

Merck has awarded $15,000 to the Sarcoma Alliance so that it can update the software and print pamphlets for its Peer-to-Peer Network, in hopes of reaching more people.

The program began in 2005 and now has more than a thousand participants in all 50 states and 12 countries. It's open to patients, caregivers and others affected by sarcoma. Because of the rarity of the cancer, participants rarely live in the same city. After two people are matched, they usually communicate by phone or via the Internet.

Sarah of St. Cloud, Fla., and Brenda of Corona, Calif., were matched five years ago. They talk once, twice, sometimes even three times a week by phone, but they’ve never met.

“I got blessed,” says Sarah, at right. “We became fast friends. We both leaned on each other. We’re on this journey together. Hopefully, one day we’ll meet.

"It’s not Peer-to-Peer, it’s Friend-to-Friend.”

Both were diagnosed six years ago with synovial sarcoma. Sarah’s left arm was amputated above the elbow, and Brenda lost her left leg above the knee. Both did chemotherapy.

“Brenda and I are like mirror images. Same age, same sarcoma,” says Sarah, 49.

“We talk all the time about everything -- life in general – and we joke!” says Brenda, at left, and dancing the tango in the video. When a lump arose on her leg, she got a biopsy. Otherwise, “I would not let any one touch me until they knew what it was. I had no clue I had sarcoma, but I had the gut feeling that this would kill me if they screwed up.”

Sarah says she had pain in her elbow for a number of years. One doctor put her on antidepressants. She saw an orthopedic doctor for carpal tunnel. The doctor who finally diagnosed her said “he had never seen another sarcoma in all of his years.”

“I thought I was doomed.”
But she saw specialists and remains in remission, as does Brenda. Even now, Sarah says, “Cancer is always in the back of your mind. You’re never really free of it.”

A nurse with synovial sarcoma founded the Alliance in 1999 to provide guidance, education and support to others. Merck is the second-largest healthcare company in the world.


2 comments:

Milton said...

I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.


Susan

Cancer Treatment Guide

Sarcoma Alliance said...

Thanks! I'm glad you like it. Sorry that I don't always see the comments until later. I hope you check out our main web site, www.sarcomaalliance.org. We also are on Facebook.