As many of you know, a hard part of being in the world of cancer fighters is that sometimes we lose one.
I’m sad to report the passing on April 23 of Judy Feder, who shared her powerful e-patient story here just a year ago. Please re-read how, through her e-patient community (BCMets), she learned of a blood test that gained her eligibility for treatment with Herceptin, with magnificent results. First diagnosed eight years earlier, she ended her post with this status:
My enzyme and tumor marker levels have declined dramatically, as has my swollen and painful liver. I’m almost off of the pain meds and about delirious with joy. When my onc did a physical exam two weeks ago, she burst into tears. Not only am I alive and healing because of the wisdom of my fellow patients on BCmets, but I’ve opened up a new avenue for other women with BC mets in my doctor’s practice (and, with e-patient power, well beyond, I hope).
A month later several of us got to meet her in Boston at the “Health 2.0 Meets Ix” conference. She was the healthiest looking, most vibrant person you could imagine.
Before she ever found us she had an idea that she called Patient Wisdom: She wrote, “I still remember the moment when Patient Wisdom literally popped into my head. It was almost two years ago, and the marriage of something I’d been thinking about for a while — online patient communities, and something of which I’d only recently become aware — Web 2.0 and the collective smarts of crowds.” How’s that for an e-patient on the hoof?
This March she wrote “Sadly, the old body is crappin’ out on me, but the flame burns brightly.” In April I asked how she was doing. She chattily replied that they were on a long weekend in Maine, and asked “Don’t I owe you something about some research?” A participatory e-patient to the end, it seems.
Her New York Times obituary is still available here on Obituary.com. I will miss her terribly; she was such an inspiration.
Oh, crap.
Farewell, Judy, and thanks for all you’ve done.
I became friends with Judy through mutual friends and we spent time together at conferences, most recently Medicine 2.0, where she spoke eloquently. I found her inspirational and know many shared that view.
Judy participated in a study I was doing with a student on why people write health blogs. Since she answered this publicly, I will quote from her. Her answer in January 2010 to the question, “Do you read other blogs by people with health issues and, if so, which and why?” was as follows:
“I do. Some fellow cancer patients, even those who don’t share my diagnosis, blog, and I admire them greatly. I read e-patients.net, and Dave deBronkart’s blog. I have a Google homepage with a series of blog feeds – things that catch my eye. I’d say they do skew more toward information than emotional support – there is so much we need to learn and impart about our beleaguered system. I’m passionate about doing what I can with the time I have left to bring the voice and experience of the patient more to the fore.”
Although I did not know Judy, I can feel her dedication and know that she contributed greatly to the e-patient movement by inspiring and empowering those she touched.
May she experience great peace…