I was positive that this would be the day that I'd be admitted to Hotel Hope, but it didn't happen. My white blood cells and platelets have gone down, not up, since Tuesday. I'll have the weekend to visualize my bone marrow pumping out hundreds of thousands of tiny plates and miniature Caspers before trying again on Monday.
Many of you have wondered why I don't receive a platelet transfusion. I get the yellow stuff when my platelets fall to a dangerously low level to bring them up to safe levels so that I don't bleed to death from a minor cut or hemorrhage. But the transfusion can't raise the counts to the levels necessary to proceed with the next round of chemo.
I hate this. I feel as though I've lost control, but the truth of the matter is that I never had control to begin with.
My consolation prize is that we're meeting friends for dinner at a Los Feliz sushi bar. (Don't worry - I'll stick to non-raw fish dishes, like monk fish liver with ponzu sauce, barbecued eel and grated mountain potato.)
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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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June
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- I Feel Gooood (So why do I feel so bad?)
- Susan hits the Spot on Friday
- I'm Too Sexy for my Hospital Gown
- Come and Get 'Em - Plums & Apricots Are Ripe
- Terminal Embarrassment
- Platelets Behaving Nicely
- More "Things To Do Before You Die"
- Up, Up and (Almost) Away
- Boing, Boing, Boing
- Winning the Lottery
- How is my life like a Stephen King novel?
- Platelets behaving badly
- Is today the day?
- Dos and Don'ts
- When a Friend Has a Serious Illness
- Home Again
- What's in Bloom?
- Cheer Up!
- Another Postponement
- Cancer Banter at the Car Lot
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June
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Cancer Banter
I can't die. I still have to find the perfect purse.
7 comments:
Leave it to you to find the positive side of every situation. Enjoy your dinner out.
Had a great graduation party; having Denise here was the best. Had a margarita for you!
Well, crap, I guess it's safe to say the novelty of all this cancer stuff is starting to wear thin!
Control is often an illusion at the best of times. You just get to have it spelled out on lab results. (Which I know went right into your spreadsheet.)
I promise to visualize platelet production for you as well. Itty-bitty microscopic Fiestaware plates. (I think it's easier to visualize stuff I've actually seen.) Remember, Fiestaware is made in West Virginia, so there is a connection to La Ninnie Chooch.
Oh dear Susan! I'm bummed.
In fact drown me in sake.
I got your back on the control issue. I suppose that is why surrender is the highest state of mind. My mantra is "there is no control, only choice". As always, you are my hero. ps - did you get an envelope from me recently?
Dear Susan, I am so sorry to hear the news. This is surely gruelling for you, but at least your food is better than gruel. The entire Duck Family has put their heads and hearts together for you. This delay has ruffled more feathers than you know!
The world of chemo is topsy turvy. But that's not all bad.
Usually, folks go into the hospital when their blood counts are bad, and come out when they're good.
Usually, friends congratulate you when you are disciplined and exercise regularly.
Usually, obsessing about food is a sign of psychological disorder, indulged in secret or even completely denied.
Usually, gardening is considered therapeutic and is encouraged.
But, paradoxically, usually indulging in anything pleasurable will evoke clucks and tsks from shadowy parts of the sidelines.
Usually, we live day to day without even noticing the moment to moment.
Usually, we communicate with even our best friends only once in awhile -- unless we work with them, in which case the communications may be more about grousing than about pleasure.
Usually, we are so distracted and busy, and are so hypnotized by the man made world, that we forget everything is natural, that we are all connected, and that nothing can be healthy or happy if it's hermetically sealed inside a schedule, an office and a bubble of ambition.
Usually, unless we're kids, we don't think about how beautiful motes of dust floating in the sunshine are, or know how to savor a few minutes of blue sky on a warm afternoon.
Usually, although we know how precious and healing kind words and thoughts can be, we forget to apply the knowledge.
Your experience is not our experience, but we are all learning from it and are trying, with all of our hearts and kindly human intentions, to share our strength with you.
Love,
Mrs. Duck
Thanks for all of the support, everyone!
Beautiful post, Karen.
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