A lot of friends have called to let me know that they'd like to see me before I set sail on my Hyper CVAD voyage on March 26.
I've decided that the easiest way to see everyone is to host a little "bon voyage" open house. I call it a bon voyage party because I figure I'm going to be pretty sea sick from the treatment.
Please stop by on Sunday, March 25, from 11 am to 2 pm. Stay as long or as little as you like. I don't promise a fancy spread but can guarantee a mimosa to sip and a bagel to nosh.
If you need a reminder of our address, please email me privately.
I hope that my out-of-state friends who can't attend will raise their orange juice glasses in a toast to a smooth voyage.
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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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- 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
(286)
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March
(40)
- Tuesday Discharge
- Colon Clean as a Whistle
- She's BAAAACK!
- Janet Aird is taking down names!
- A Look on the Bright Side at Hotel Hope
- Drugs? Susan likey!
- Provide a ride?
- News from "the inside"
- Finding chemo...
- Get me to the hospital on time!
- A Day of Cleansing
- What a send off!
- Celebration Time
- The Headlines
- Your cancer correspondent
- Striking Gold
- Visiting at City of Hope
- I Heart City of Hope
- These Are a Few of My Favorite Foods (Part 1)
- Tara the Terrific!
- A Twist in the Plot
- Bon Voyage
- "Before You Die" Books and Finding the Perfect Purse
- What's in YOUR Back Yard?
- I Second That Opinion
- Signed, Sealed, Delivered
- Hyper CVAD, Hyperactivity
- Surprise, Surprise, Surprise
- Calendar Girl
- Just the Facts, Ma'am
- It's Crunch Time!
- Chemo Klatch
- Giving Up Selfishness
- Holy Guacamole
- Avocados, Anyone?
- Funny Lady
- It Aint Easy Being Green
- What About George?
- Bad to Good to Great
- What's Worse Than a Root Canal?
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March
(40)
Cancer Banter
I can't die. I still have to find the perfect purse.
17 comments:
Thank you! Donnie and I would love to be there. We'll bring a dessert - let me know if that isn't ok.
You're amazing.
Ken and I will have a long distance mimosa with you.
Count us in long distance as well. Jim and I will have afternoon bagels while you West Coast friends are having brunch
xxxooo Carla
Hi, Ninnie Choo Choo. Slàinte mhòr agad!
Buain na Ràinich
Tha mi sgìth, 's mi leam fhìn,
Buain na ràinich, buain na ràinich,
Tha mi sgìth, 's mi leam fhìn,
Buain na ràinich daonnan.
This is an old gaelic tune, about cutting bracken and being tired and all alone. One can feel sorry for themselves (like the singer) or do as Susan suggested and raise our glasses in a toast to Ninnie Choo Choo. Three cheers for my sister......hip hip.....
p.s. Just in case your wondering about the "Ninnie Choo Choo". When I was very young, I pronounced my sister's name, Linda Sue, as Ninnie Choo Choo.
Hi Susan!!
Finally was able to get a comment on here!!!! Not sure how I finally succeeded.
Great idea! Look forward to giving you a BIG HUG!
Count on me for an appetizer
myrna
I will be there, with something in hand. Don't know what just yet.
I am just tickled your sister spilled the "Ninnie Choo Choo" beans. That is just hilarious.
It's Mrs. Duck (Karen Karl). I was stunned to hear about what you're going through (from Rose) and then to read your blog, which is a revelation. I'll come by, with an edible accompaniment, on Sunday.
See ya then with a bottle of bubbly :)
Thanks to my brother, "Piper Robert," you all are finding out all kinds of things about me.
- That my real name is "Linda Sue," not Susan
- That my brother's nickname for me is "Ninny Choo Choo"
- That my brother, a professional bag piper, is fanatical about the Scottish half of our family tree. (Who else would quote Gaelic verse?) I, on the other hand, lean towards the Japanese half.
Susan -
Well that certainly explains a lot of mystery surrounding you all these years! Thanks for the explanation. I was beginning to think I'd drifted onto another blog. See you on Sunday.
Hi Susan,
For what little it's worth, I used to read "Harry Potter" to kids with cancer here in Memorial Hospital in Long Beach. Their eyes lit up and in that brilliant glow, in that yearning to be touched by the magic of fantastic words, in that sheer promise of the imagination, the mind over matter as it is oft called, they seemed to leave their bodies for more than a time, yes, a good time. I'm reminded of your own well-trained eyes and sunny, hopeful vision of life. Here is but a small reminder then of a great love--yours,
Scott (from the Pasadena bookclub...)
Darling Susan, I and mine will be there too with a treat to share. (I am lucky today, it worked! Sometimes it lets me on and others, not.) I am praying those COH problems be resolved immediately. I can be a tough ombudsman and advocate for you...I have had experience in this area...just let me know. PS my nickname was Suzy Banana so now my nursing students call me MS. Banana! Ready to set sail with you Choo Choo
The Mathews' will be there in spirit! Don't mind to make myself a mimosa to join you that day, either! I agree Dad, "hooray!" And I always wondered from where Ninnie Choo Choo came?
Can't wait to visit when the time is right.
Ps. Seems Will has sided with the Japanese portion of our family, too. Jesse has dubbed him "Mr. Miyagi." He does show a slight resemblance?
I'll be there with something good.
I'll be there with something good.
I'll be there with something good.
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