Day +365: I get knocked down but I get up again…

“You’re never gonna keep me down…”


Happy Rebirthday to Me!

Today, my new immune system is one year old. Our journey is still a long ways from being complete but one year is a significant milestone. Tomorrow, I go for my annual checkup at Johns Hopkins which will include a bone marrow biopsy and childhood vaccinations in addition to the usual blood draws and general examination.

We can hardly believe how quickly the time has passed. I’m incredibly fortunate to have fared so well – no infections, no immunosuppressants, no steroids. I engrafted quickly despite having an unrelated donor. My white blood counts returned to normal range within the first month, followed swiftly by my platelets within the first two. My red blood count has hovered slightly below normal (probably due to the Vidaza) but the hemoglobin and hematocrit components have stayed solidly in the normal range since February. My day +55 and six month bone marrow biopsies both showed 100% donor cells with no dysplasia and no chromosome abnormalities.

There’ve been a few bumps in the road…chronic nausea, unrelenting dry mouth and dysguesia (everything tastes wrong), dry eyes, osteopenia, splotchy skin, and very sparse hair. I participated in a study at NIH and was diagnosed with chronic graft vs. host disease affecting my eyes, skin, mouth, salivary glands, gastrointestinal tract, and vagina. These are not currently affecting my health or quality of life dramatically but they are annoying. My hematologist thinks I have “just enough” GVHD to keep relapse away. He hasn’t steered me wrong yet. I admit to being frightened about how quickly everything could change but I force myself to remain optimistic about the future.

In many ways, it’s been even harder on Michael than on me. While I’ve had to focus only on getting better, he’s had the shopping and household chores on top of his long work hours, not to mention the general stress of worrying over my illness and my transplant. We’ve had lots of support from our families, for which we’re eternally grateful. Our friends have also been there with us, cheering us every step of the way. Thanks to all of you and especially to my donor!

We’re celebrating this evening with dinner at our local hangout, Josef’s. Michael and the cats got me new gadgets for my rebirthday gifts – an iPhone 4S and a Kindle Touch. I’m already up to chapter 6 in Grisham’s latest, The Litigators, and the new phone will arrive later today via FedEx. I’ll be able to load it with my music and many of my apps from my iPad.

Life is great!

9 Comments:

  1. Happy Birthday! This post makes me so happy! I’m thrilled for your health and good spirit. Hooray for Michael being such a star too!
    love from the Marks in Nova Scotia, xoxo Jenny

  2. Happy Birthday Karen! Despite the little chronic “stuff”, you are writing, talking and functioning! It is good! I’m happy you are doing well. Keep going girl! Lori

  3. Happy Birthday Karen! Tim and I are thinking of “U”. Here is a quote I found that reminds me of both of you and Michael. Sending you big hugs!!

    Lydia

    What lies behind us and what lies before us
    are tiny matters compared to what lies within us.
    ~Ralph Waldo Emerson

  4. Happy rebirthday to you! It sounds like you got some great presents. Btw, I can ID that song. It’s from my high school years. Thubtumping by Chumbawamba. I think they were a one hit wonder.

  5. Happy rebirthday, I hope that doesn’t come with recake. Maybe re:Cake is more appropriate here.

    I liked another song by Chumbawamba, and I think it was called “Amnesia.” The key line was “Do you suffer from longterm memory loss? I don’t remember.”

  6. chumbawamba!!!!!!!!!!!!! happy birthday to your ammune system happy birthday to your immune system happy birthday to your immune systemmmmmmmmmmm happy birthday to youuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuu!!!!!!!!
    xoxoxoxo dana and gang

  7. I already said it before but can’t hurt to repeat — but happy rebirthday to you!!!

  8. happy birthday!

    my white cell count went down this week, so i’m a bit stressed out.

  9. Happy Re-Birthday! I am glad you and Michael are doing so well. You are both troopers!

    We are in our new house. I like it, but it will take awhile to get settled in. It is huge from what we just moved out of. How can we not find a place for everything? It is the mystery of the day for me. 🙂

    Looking forward to decorating for Christmas! I haven’t decorated in years. Finally a tree again. And I am also looking forward to Abigail and Bryant spending the night tomorrow. My first sleep-over with the grandkids. I hope I will still be excited after they go home. 🙂

    Love you both. Hopefully you will get to visit us sometime soon. Do you like Yellowstone? It isn’t to far from us. 🙂

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