This is the day I've been waiting for - Day Zero. I'll receive some pre-drugs this morning and then six bags of "garlic-scented" stem cells.
Yesterday afternoon was better for me, but an intermittent computer server and an intermittent stomach kept me from the blog keys. If any of you have sent me emails, I'm slow right now in returning them, so bare with me.
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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.
12 comments:
Day Zero? I think I'll call it "Day Yay!"
But..garlic? Smooky, you've got some 'splainin' to do.
Let's all say Hooray and G'day to Day Yay!!!! Ya hung on Smookie and we're all celebratin'. But, like Paula, I too wonder "What's garlic got to do with it?" You don't EAT the stem cells, do you?
Garlic? Hmmmm.......interesting.
A good teeth scrubbing and face washing will always revitalize. If you remember, in WV it's TOOTH scrubbing. Did you ever use baking soda for your scrubbing at Grandma's?
Day Yay. I like that. It's Day Yay, Smookie. Time to buckle down and get with it.
But garlic? Are the stem cells odorized to give an indication you're on the plus side? Maybe you should have chosen peppermint.
Okay, something is BUGGING ME and I am willing to risk the wrath (or bemused eye-rolling) of my fellow posters to get it off my chest.
I've been spelling it "Smooky" because that's what you get when you combine "smart" and "kooky."
"Smookie," on the other hand, would be the contraction of "smart" and "kookie." But... "kookie" is not a word!
However, it is a proper name introduced in the series "77 Sunset Strip." Teen idol Edd Byrnes played a character called Kookie. He even recorded the 1959 novelty song "Kookie, Kookie, Lend Me Your Comb."
Just wanted to put that out there. We can all go back to our "Day Yay" festivities now.
Paula, are you being "Kookie" now? Ha ha. Glad you are soldiering through it, Susan.
Lisa C.
Okay, so what's the standard spelling? Let's all agree here. I think I've used both versions, but I prefer Smooky with the Y.
Susan, I'd say you get the decisive vote. SmookyNation is a dictatorship, right?! ;-)
all for one and one for all: Smooky! Smooky! SMOOKY! My tears are even happy. Prayers nonstop for you, Love! Yours, Suze
Smooky. Smookie. I've used both and have seen both. I haven't seen "Smookey".
Paula, since you came up with the nickname, it's standard protocol for you to make the decision. Unless you defer to Susan, or a "givesie" as we used to say. (Is that a "givesy"?)
If I may have some input before the final call is made. "Smookie", IMHO, has a more informal feel, warm and fuzzy, if you will. My friends Charlie, Shawnie, Billie, Davie are all "ie" guys. My Grandmother's dearest friend was Effie Martin. That alone persuades me to lean toward the "ie". But, I'm a company kind of guy, whatever is decided, I'll go with.
What do you think, Sis?
BTW, how ya doin'?
p.s. All these years I thought it was "Cookie".
The stem cell retransplantation was a piece of cake today. No nausea, but still to appetitite.I just have six more bags to go tomorrow.
The stem cells are "preservered" in in the garlic until they're good go go.
As for "Smooky" versus "Smookie," I"m leaning toward "Smookie." Both are acceptable spellings of smart + kookie (or kooky).
The great and powerful OZ has spoken.
Paula, you're so sillie sometimes! Why worrie about how friendlie a spelling is? Relax and have a fruitie drink by the ocean on a breezie day.
Tara
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