Wednesday, January 28, 2009

My name is Susan and I'm a Yahoo! Group junkie

Good news: I went in for my monthly visit at the City of Hope on Monday and my Eosinophils (EOS) are still behaving. I mentioned to Dr. Forman that I'm a member of a Yahoo! Group for individuals with EOS issues. The group concensus is that it could take as long as six months after tapering off high-dose steroids for the EOS levels to go haywire again.

He agreed and took out his pen and signed me up for monthly visits for the next six months. Most patients who are one-year post transplant get to space their visits three or six months apart, but this EOS business is keeping me on a short lease.

Dr. Forman was curious about how I found an EOS group and I told him there was a little thing called the World Wide Web that made it easy for patients to find their peers. The rarer the disease, the more desperate patients are to make connections. Most of the members of the EOS group have been diagnosed with HES (Hyper Eosinophilic Syndrome). Almost everyone has a horror story of becoming deathly ill (much as I was last summer) before doctors reached a diagnosis. I was actually pretty lucky to be under the care of a hematologist at the time.

As I've mentioned before, my preoccupation with the EOS has taken my mind off the possibility of a cancer relapse. Even Dr. Forman said, "I almost forgot the reason you first came here," as he checked my neck for swollen lymph nodes. And my email messages from my Mantle Cell Lymphoma (MCL) group go mostly unread these days.

It's also taken my mind off my cutis laxa (lax skin) disorder that, I'm ashamed to admit, was a bigger blow to me than finding out I had cancer. Mantle Cell Lymphoma is treatable; cutis laxa is not. I had fears of looking like a shriveled prune before my 55th birthday, alive but repulsive. In the last month, two other patients, a man and woman, have emailed me after finding my blog post on cutis laxa. Both were extremely relieved to find someone else with the same rare condition and are eager to share stories, feelings and recommendations for plastic surgeons.

I plan to talk by phone tomorrow with the woman with sagging skin. I may even suggest that we start a Yahoo! Group.

7 comments:

Ronni Gordon said...

Interesting. I didn't know of such Yahoo groups. Glad you are finding support there. I didn't even know that such a condition exists, and I imagine you run into that a lot in the general public.

Susan C said...

These groups really are amazing. In my MCL group there are several members who have become experts on the latest treatments and clinical trials, best doctors and cancer centers (for this disease), etc.

All of the messages are archived, so you research a specific topic. When I found out I was going to have the Hyper CVAD chemo treatment, one of the first things I did was search the archives for every shred of information I could find.

The group has even compiled a list of MCL patients, their treatments, relapse rates and about 30 other pertinent fields. For people who love data, it's a dream come true.

It's the same with the EOS group. And, in every group, it's amazing to see how generous and supportive the members are.

altadenahiker said...

Maybe you'll have to join a support group for support group junkies.

(Wow, do you remember what research was like pre-web? Took a lot of time and skill.)

Margaret said...

Can we start a group for people who are getting obsessive about checking their emails. I think I'm beginning to have a serious problem.

susiegb said...

Actually Susan, as a fellow MCL-er, I think the MCL group with the spreadsheet of patients, treatments etc. is the ACOR one ... :)
http://listserv.acor.org/archives/mantlecell.html

But they are a wonderful support, aren't they. And there is a Yahoo MCL list too ...

Susan C said...

"support group for support group junkies" Ha! I haven't even told you about the three other groups (not medical related).

Margaret, I'm having the same problem. And then there's facebook and twitter and linked-in and God blogs and i-ms and all the other new ways we communicate these days. When my Internet's not working, my productivity goes up, not down.

Susie, you're right about the MCL group being a part of ACOR (Association of Cancer Online Resources). ACOR sponsors "159 mailing lists that provide support, information, and community to everyone affected by cancer and related disorders." It's a great starting place for support for cancer patients and their family and supporters.

Jean said...

Hi Susan--
I'm Jean from the National Bone Marrow Transplant Link, an organization which helps BMT patients and families cope with the challenges of transplant by providing vital information and personalized support services. We found your blog through Google blog alerts.
You might be interested in our programs, including Celebrating Second Birthdays, which honors BMT survivors on their transplant anniversary. Please visit our website, www.nbmtlink.org, for more information or email me at jeanjones@nbmtlink.org.
All the best,
Jean