I've been suffering from blogging guilt, gardening guilt and grapefruit guilt. At least there's a cure for the last one. Read all about it at Open Mouth, Insert Fork.
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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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Be the Match!
Links
- About Stem Cell Transplants
- Asians for Miracle Marrow Match (A3M)
- City of Hope
- City of Hope: Donating Blood or Platelets
- Daily Survival Guide for Serious Illness (Gilda's Club and the Tom McDermitt Fund)
- Histopathology of MCL
- Leukemia & Lymphoma Society
- Lymphoma Information Network
- Lymphoma Research Foundation
- Mantle Cell Lymphoma Consortium
- National Cancer Institute
- Your Brain After Chemo
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:
Hi Susan
We've never met but I'm so happy to know you're alive! I'm a 2X cancer survivor (NHL) who found your blog some time ago. I've followed your journey, been inspired by your posts and remembered you in my prayers. (I'm a pastor, married 30 years last wek and I have 2 amazing adult kids)
I'd returned to your blog from time to time since December, always hoping for a new entry letting me know that cancer hadn't claimed yet another warrior.
I paused tonight before clicking the link to your site hoping not to see the "When Fatigue Sets In" article at the top of your page... My heart leapt to see new activity after 6 months!
Our journey has taught my wife and I to "enjoy the good days, endure the bad days and keep going forward." I hope you have many many good days ahead as you go forward.
Peace,
Tom
Susan
You don't know me, but I too have been following your blog and been wondering if all was well. I also have mantle cell and have just celebrated my 3 year in remission.
I am so glad you are well and it made my night when I checked your blog for some / any news.
Anyway, best wishes from Scotland and I can't stop smiling that you are still with us :-)
Linda
Tom, Thanks so much for the lovely comment.
I think you said it far better than I ever have when you wrote, "Enjoy the good days, endure the bad days and keep going forward." So well put, and I'm honored that you think CB has imparted that message.
Wishing you many good days ahead too (and the strength to get through the bad ones).
Linda, Thank you as well for your lovely note. Congratulations on three years in remission from MCL. I will be celebrating my four-year "re-birthday" on November 13.
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