I was spending a lazy Sunday moring in bed curled up with the LA Times, NY Times and a cup of Peets coffee. When my phone rang, the last person I expected was a dermatology resident from the USC Keck School of Medicine.
"Hello, Mrs. Carrier? I'm the resident who will be presenting your case at the Dermatology Grand Rounds on Tuesday," she announced. I snapped to attention and asked if she knew of any other cases like mine. She said that she's found documentation of 20 cases in which the patient developed similar symptoms in conjunction with Lymphoma.
Since George and I will be in Seattle on Tuesday, we'll have to postpone the Grand Rounds presentation until the first Tuesday in April. This is a good thing because my dermatologists are still waiting for results from skin biopsies taken a week ago from my flank (side) and inner thigh.
I've read a lot of anecdotes on list serves about the presence of skin rashes and conditions prior to a Lymphoma diagnosis. A pathology report from 18 months ago diagnosed my condition as Granuloma Annulare (GA), even though it looked different from any case of GA my dermatologist had ever seen. Today, my skin looks like crepe paper in all the areas once affected by GA. Coincidence? I don't think so. Weight loss? I think not. Aging? Don't even go there.
For some reason, hematologists and dermatologists are reluctant to make a connection between skin conditions and Lymphoma. If a connection can be made, this would be excellent training for both groups of specialists and could possibly lead to earlier diagnosis. The next step will be to figure out how to restore my skin to its normal, "youthful" appearance. Beauty may only be skin deep, but the potential benefits from this case go way below the surface.
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March 2008 - Sometimes I feel like a wig.
Sometimes I don't.
Up a tree and feeling on top of the world
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What does a writer do when she finds out she has stage 4 Mantle Cell Lymphoma? She blogs. Because, as everyone knows, cancer sucks, but blogging rocks.
On January 26, 2007, I was diagnosed with Stage 4 Mantle Cell Lymphoma (blastic variety), a rare, aggressive and treatment-resistant form of non-Hodgkins Lymphoma.
My team at the City of Hope decided to bring out the big guns - six rounds of Hyper CVAD followed by an autologous stem cell transplant. I bounced back after each round of chemo, but my blood counts didn't.
After four rounds we called chemo quits and started collecting stem cells for the auto stem cell transplant. The harvesting took three tries, two drugs and eight weeks, but I finally eked out the minimum two million stem cells.
After megadoses of chemo, I received my stem cells on November 14 and 15, 2007. I bounced back almost immediately. Best of all, I achieved complete remission from the Mantle Cell Lymphoma.
In January 2008, I was hospitalized for 11 days for chemo-induced pneumonia. I bounced back.
In the summer of 2008, my eosinophils (a component of the white blood cells) rose to dangerous levels and infiltrated my lungs and GI tract. My weight dropped to 105 pounds, and I was incapacitated for nearly three months. Once again, I bounced back.
I continue to make monthly visits to the City of Hope for blood tests and check ups, quarterly visits for maintenance Rituxan and semi-annual visits for scans.
I'm still in remission and have more energy than ever. And about that perfect purse? I keep looking.
Here are a few other things keeping me busy:
My food blog, Open Mouth, Insert Fork
My consulting business, A New Leaf Communications
The Orange Cat, a site for family fun in the San Gabriel Valley
A3M - Asians for Miracle Marrow Matches
YWCA Pasadena-Foothill Valley
IWOSC - Independent Writers of Southern California
On January 26, 2007, I was diagnosed with Stage 4 Mantle Cell Lymphoma (blastic variety), a rare, aggressive and treatment-resistant form of non-Hodgkins Lymphoma.
My team at the City of Hope decided to bring out the big guns - six rounds of Hyper CVAD followed by an autologous stem cell transplant. I bounced back after each round of chemo, but my blood counts didn't.
After four rounds we called chemo quits and started collecting stem cells for the auto stem cell transplant. The harvesting took three tries, two drugs and eight weeks, but I finally eked out the minimum two million stem cells.
After megadoses of chemo, I received my stem cells on November 14 and 15, 2007. I bounced back almost immediately. Best of all, I achieved complete remission from the Mantle Cell Lymphoma.
In January 2008, I was hospitalized for 11 days for chemo-induced pneumonia. I bounced back.
In the summer of 2008, my eosinophils (a component of the white blood cells) rose to dangerous levels and infiltrated my lungs and GI tract. My weight dropped to 105 pounds, and I was incapacitated for nearly three months. Once again, I bounced back.
I continue to make monthly visits to the City of Hope for blood tests and check ups, quarterly visits for maintenance Rituxan and semi-annual visits for scans.
I'm still in remission and have more energy than ever. And about that perfect purse? I keep looking.
Here are a few other things keeping me busy:
My food blog, Open Mouth, Insert Fork
My consulting business, A New Leaf Communications
The Orange Cat, a site for family fun in the San Gabriel Valley
A3M - Asians for Miracle Marrow Matches
YWCA Pasadena-Foothill Valley
IWOSC - Independent Writers of Southern California
March 2008 - Sometimes I feel like a wig.
Sometimes I don't.
January 2009
Up a tree and feeling on top of the world
Cancer Banter
I can't die. I still have to find the perfect purse.
3 comments:
I hope you can help them make the connection.
I remember when I was a kid, a friend of my parents had Hodgkins, and a bad rash. My mom and dad (a microbiologist and biophysicist, respectively) explained to me that rashes are common with Hodgkins. This was back in the 50's. I'd have thought the connection between lymphoma and skin disorders would have been "fleshed out" long ago. Surprising how long some things take.
When I do a Google search with "skin rash" and "Hodgkins Lymphoma," the connection seems clear.
Of course, with non-Hodgkins Lymphoma, there are so many subtypes.
I just received an email from a fellow "cell mate," who presented with a baffling rash about one year before his diagnosis. Doctors kept telling him the swollen red marks were bug bites. One even got specific and said they were from bugs that live on squirrels.
The rash disappeared with chemo, but has left at least one area that he describes as a "moon crater." Interesting that our skin has "puckered" in similar ways, even though I'm female, he's male, I'm in my 50s, he's in his 40s, I'm underweight and he's trying to lose weight.
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