“You’re never gonna keep me down…”
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!