T+1096 days. Three years old. Ain't it funny how time slips away.
They say if you make it 1 year, you will probably make it to 3, and if you make it to 3, you will probably make it to 5. Well I am on my way to 5, but not without a price, and confess to being overly optimistic about my progress in my last post. "Pride goeth before a fall" and all. In January things started to deteriorate. Chronic Graft v.s. Host Disease arrived and with it a setback of about 9 months.
"There is also Chronic GVHD which can show up anytime from now on... I hope Chronic GVHD will not be the subject of a future post, as this drama plays out for me. "
That quoted post is here: Graft Versus Host Disease (GVHD) . It is a short one with lots of cartoons and pictures and is sort of required reading for today's post, which will be very short.
Well, this is the post I hoped I would not have to write, and I have been putting off writing until today, my third birthday, and at 2 am. Here goes-
I was feeling so bad. So I asked my Transplant Doctor just what I had
I said "Doctor" Doctor
"Mister MD" Doctor
"Can you tell me" Can you tell me
"What's ailin' me " Doctor
He said "Yeah Yeah Yeah Yeah " Yeah Yeah Yeah Yeah
You got G V H D
Apologies to Rudy Clark and Arthur Resnick the writers of Good Lovin'.
3 versions of Good Lovin'
Note how short they are- well under the traditional 3 minute limit of 60's AM radio - a barrier broken when Bob Dylan squeezed 6:09 worth of Like A Rolling Stone onto a 45 in '65. B side was Gates of Eden- but I digress.
1965 version by Lemme B. Good The first recording. 2 minutes.
Cover by the Olympics a month later, charted to #81 on Billboard. 2 minutes
The Young Rascal's 1966 cover went to #1 on Billboard. 2:42 minutes.
OK, got the tunes going?
That quote again -
" I hope Chronic GVHD will not be the subject of a future post, as this drama plays out for me. "Well here is that future post, the one I so hoped I would not have to write.
Things were going swimmingly and I had tapered off the Prednisone
and the Tacrolimus (aka Prograf ) - side effects too numerous to list
The Cortico-Steroid induced Type 2 Diabetes (side effect) was all but gone, and I had tapered off those meds too. No more swollen feet and legs, skin tone coming back, regaining weight and muscle mass, riding my yard sale bike. I could play my guitar for 5-6 hours without triggering an immune response and cramping in my fingers and hands. I felt better.
But I had stopped paying close attention to my monthly blood lab results, and un-noticed, my liver numbers, specifically the Alkaline Phospatase shot back up, and with it gut, muscle cramping, and dermatological issues common to Chronic Graft v.s. Host Disease. Since my new immune system was no longer reigned in, there had been an insurgency and my warrior cells turned on me again, and they had to be suppressed and sent back for re-education and re-grooving*. So back on the Meds, get stabilized, start another gradual taper, and ascertain an appropriate maintenance dose.
The good news is that this time I know what to watch for. I am trialing a new med, Jakafi, which my Main Medico heard about at this year's ASH (American Society of Hematologists) convention, and is proving beneficial in some cases.
After finally joining FaceBook in January, I have joined an MDS group and a GVHD group.
What a vital (and socially redeeming ) use of social media! The international sharing of information is serious. There are no cat videos or political rants, just questions put to the group-mind, advice to newbies, hand-holding and compassion. Just knowing that one is not alone in this, this Life Drama in which we have been unwittingly cast, often by a random genetic mutation, is reassuring. The discourse helps me to stay on an even keel, cope with the daily challenges, and learn more about what condition my condition is in.
And though it has again started to trigger Cytokine Cascades with cramping in my hands and fingers, I am still immersed in music. In fact Barstow and The Revamps have a gig tonight at Donna Nyzio's Art Show here in Beaufort.
So all in all things are looking up, and I am able to maintain a positive attitude about what is going on with my somewhat out-of- control bodily functions and take the days one at a time. I still set unrealistic goals, and then feel bad when I don't meet them, but hey, who doesn't? Our local hospital has struck an agreement with Blue Cross Blue Shield NC and will be reinstated in the network in a few weeks, so that is one less thing to worry about.
I am on the right side of the sod. Things could be worse.
More to come, but for now-
* see Firesign Theater, re-grooving from "how can you be in two places at once , when you're not anywhere at all"