What's my favorite new Pasadena pair?
Find out at Open Mouth, Insert Fork.
Friday, January 30, 2009
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.
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.
Thursday, January 22, 2009
A Water Bottle by Any Other Name
Take a peek at one of my Christmas presents on Open Mouth, Insert Fork.
Monday, January 19, 2009
O-Spam-a Musubi
Let the celebration begin.
I'll be partying with friends at an inauguration breakfast tomorrow. In honor of our new Hawaii-born Commander in Chief, I prepared spam musubi, or O-Spam-a Musubi as I like to call them.
Find out three other things I have in common with Obama at Open Mouth, Insert Fork.
I'll be partying with friends at an inauguration breakfast tomorrow. In honor of our new Hawaii-born Commander in Chief, I prepared spam musubi, or O-Spam-a Musubi as I like to call them.
Find out three other things I have in common with Obama at Open Mouth, Insert Fork.
Zippity Doo Dah to Mutts for Marrow
I don't have time to post my Doo Dah photos today, so I'll share the work of several other local bloggers.
Nancy's Update: When Nancy heard about the Mutts for Marrow, she jumped in with all four paws, recruiting mutts and designing tiaras. I have Nancy to thank (and blame) for getting me involved with A3M.
West Coast Grrlie Blather: Kelly, another fan of cause-related fun, marched with Thorny Rose Ann Lau and the Great Firewall of China Marching Brigade.
KCH Blog: Kathy got some great shots, including one of the Mutts for Marrow.
Nancy's Update: When Nancy heard about the Mutts for Marrow, she jumped in with all four paws, recruiting mutts and designing tiaras. I have Nancy to thank (and blame) for getting me involved with A3M.
West Coast Grrlie Blather: Kelly, another fan of cause-related fun, marched with Thorny Rose Ann Lau and the Great Firewall of China Marching Brigade.
KCH Blog: Kathy got some great shots, including one of the Mutts for Marrow.
Friday, January 16, 2009
I love a parade!
Doesn't get much better - having a blast while spreading the word about the need for "mutts" and minorities to register for the National Bone Marrow Registry. Also got to plug A3M and Krissy Kobata. Nancy made my tiara decorated with dog bones. That handsome hapa standing next to me is Scott Fleeman, a high school student who recruited several mutts to join us on Sunday.
Scott and I are upstaged by Betty, our spokes-mutt for Mutts for Marrow.
This is how mutts get down to disco music.
Disco lives again after dying an early death from polyester poisoning in the early 80s. Look for this disco troop at the parade on Sunday.
See more photos on Flickr.
Thursday, January 15, 2009
Mutts on the Move - KTLA Channel 5 on Friday Morning
Tune it to KTLA, channel 5, tomorrow morning for pre-Doo Dah Parade coverage in Pasadena. Reporter Gayle Anderson will interview 14-year-old hapa Scott Fleeman and me about our entry, Mutts for Marrow. When I spoke with Gail this morning, she said, "This sounds twisted. I love it."Of course, Queen Skittles and Grand Marshall Charles Phoenix will be there too.
Krissy, Queen of the Mutts, isn't available tomorrow, but she'll be leading us at the parade on Sunday wearing her dog biscuit tiara.
Come out and catch a dog bone biscuit on Sunday. Steve's Pets in Altadena generously donated a few hundred doggie treats for the event.
If you're a mutt or a minority and you'd like to march with us, it's not too late. Just show up at Memorial Park at 10:30 on Sunday with the $10 fee. We'll provide the bones.
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