I've just returned from a stroll without the pole and am savoring my last 20 minutes of untethered freedom. My nurse, Christina, will come at 10:30 am to hook me up for my pre-meds. I should be conked out by 10:31 and will likely sleep through the four-hour infusion of Carmustine. I wonder if the staff will still mistake me for a visitor instead of a patient when I wake up.
I have a fabulous, Central-Park-style view from my window; my favorite patient care assistants (PCAs) and nurses have been taking good care of me and I'm learning how to survive on "spa" food. (For breakfast, you can't go wrong with a bowl of Cheerios, milk and banana, the only fresh fruit I'm allowed.) So far, so great.
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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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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
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2007
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November
(40)
- Miracles DO happen
- Home Sleep Home
- Let Sleeping Dogs Lie
- Got Platelets?
- Elf Yourself
- Special Die(t)
- Nap time WILL be enforced!
- A Day in the Life
- Homecoming Queen
- The Best News Yet
- The Yellow Mask
- Hair, we go again
- Thanksgiving Wrapup
- Mac to Mac
- Remain calm! Do not be alarmed!
- A Day Without Blood
- That was then, this is now
- A Patient's Life
- Bantering or Babbling?
- Hairspray, bell bottoms, the Twist, go-go boots, T...
- Baby, it's cold inside!
- A Deep Dream Life
- Day Zero
- I feel lousy, but I made it!
- Did I write too soon yesterday? (or day bebore)
- The Velvet Hammer
- Beware of Patient
- Everything Grows
- Day Zero
- Countdown
- Housekeeping
- Comment(ary)
- And she's off . . .
- Let's be boring
- Mayo Musings
- My Favorite Slide
- Be an Angel, Save a Life
- Put up your dukes!
- Meeting of the Medical Minds
- Go Ahead and Ask Me!
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November
(40)
Cancer Banter
I can't die. I still have to find the perfect purse.
8 comments:
I'm glad everyone is taking good care of you. I'm so sad that I can't bring you food. Food is such a symbol of caring. I'm wondering: what can we bring you? Are you fixed for books? Music? Goldfish? I know...you probably lack little in your spa like surroundings. But if it would make us feel good to bring you something...
Hi Susan Good luck. I will be sending some pictures from Chicago. I managed to get a google name so I am no longer anonymous on your blog. Cheers Howard
"Central-Park-style view", now that does sound inviting. I love your outlook (bad pun?). See you sometime next week. I'll call the nurses station prior heading to CoH. REST.
Hugs,e
I have a great way for friends to show their love. They can play Scrabble with me and . . . let me win.
It will be interesting to see what words I construct in this chemo-induced fog.
I know there are interactive game sites for chess and stuff...so maybe there is a Scrabble game site? I love Scrabble...but I would definately let you win, Susan...you winner, you! Love, Suze
Hey!!!........you playing the cancer card again? You never let James win at croquet.
What was for dinner?
Bonnie and I are praying for you. Love from big brother.
I won't even have to try to let you win. I am shockingly bad at Scrabble. But I'm still getting you something. Now, you will have no excuse it is something horrible, like a size 16 skirt or a potato peeler (both of which I have received...because I was too coy to say what I wanted.)
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