It’s here. It’s happening. I have a bit of Graft-Versus-Host-Disease starting. I know I’ve discussed GVHD before. From the beginning I was told this is my biggest risk. Although the doctors are concerned they are not surprised. I have a 60-80% chance of developing GVHD with my type of transplant (ablative allogenic from unrelated donor). It’s just a touch so far and Jeffrey is happy to see it because it shows that the graft is working. Also, according to research , long-term survival rates are improved when the patient presents with a bit of GVHD either acute or chronic. This is because the graft not only attacks the host but also takes on any last remaining elusive tumor.
What does GVHD present as for me currently? Mostly skin afflictions. I have red blotches on my arms and legs that get worse in heat. Getting out of the shower the sides and backs of my legs are a blotchy red while the fronts are a mottled purplish gray color. Kinda freaky but it clears up. Holding my laptop on my thighs or arms will produce the same red blotchiness that fades. My skin texture is different. It’s a little rough and crinkly. I’m still getting over the Demodex infection. so it’s difficult to differentiate the rash on my face and chest. Dr. Vasu became concerned at my Thursday appointment because I had a new outbreak on my ear and back. She called the dermatologist who said Demodex does not present on ears and back typically. She started me on prednisone to treat the GVHD. I use thick Eucerin cream from the pharmacist. I’ve gone through a 1 lb tub in a month. Maybe it helps or maybe it just makes me feel better.
I’ve been nauseous and vomiting some so the doc is concerned about GVHD of the GI. I’m on two different anti-nausea meds around the clock. Even so, I still don’t have an appetite. I force feed myself enough, I think. And when I do eat I try to make it count like peanut butter or eggs or some type of protein. The predisone makes me feel hungry but my stomach can’t take it. After a bite or two I have to put it away. If I’ve lost weight at my Monday appointment the doctor has said that she will do a GI scope to look for GVHD. Dr. Jeffrey thinks I need more salt in my diet because I don’t hold on to fluids. They give me a liter of fluids at the outpatient hospital visits and I pee out 3/4 of that before we leave. His solution of more salt included a trip for a burger and fries. This is his cure for all maladies of course. I did eat half of a tiny burger and 3 fries but then I was up sick all night. Xander blames it on the fast food. This gives him more fodder for his rant on the “substandard” food industry. Anyone who has watched my children has heard this lecture. Apologies.
My biggest fear that I mostly choose not to think about is the GVHD turning from mild to severe and becoming chronic as opposed to just acute. I can handle this but it’s scary if it becomes chronic. I have heard from past BMT patients that some feel they have traded one disease for another. It is something that has to be managed long term. It’s another wait and see that is out of my control. Maybe it will just go away.
According to the doctors I am no longer considered to be a leukemia patient. I am now a transplant patient. From now on if I go to the hospital I go to the BMT unit on the 3rd floor. I’ve been thinking more about my stay and remembering things that I didn’t pay attention to at the time or wasn’t aware of. I think of the perky sweet nurses who are always positive and yet cried with me. The nurses who knew when I needed it quiet and dark and came in wordlessly to take care of meds and drips. They were happy to see me sitting in the chair or walking but understood why on the days I could not get up. The PCAs who gently suggested I try to get up and take a shower or a walk and then helped me do so and tirelessly walked around the bed to take my blood pressure on my left arm because of my right arm lymphodema precautions. The PCAs and nurses who cleaned my shit and piss and vomit without a word (most of the time). The doctors who stooped down to eye level when I was laying down so they could talk to me. They would reach around my back to listen to my heart so that I wouldn’t have to move to sit up. And my primary nurse who took care of all the things and came into my room throwing jokes, singing songs and goofing off as if it was his mission to make me laugh everyday. It always worked because I did laugh everyday. I think I cried every day too. He is compassionate without being patronizing and exactly what I needed. I almost feel sorry for all my inappropriate comments and harassment.
I’m still overwhelmed by the experience and I look back wondering how I even did that. The truth is that I did what I had to do and I am surprised by my own capacity when faced with the choice of this or death. I believe that I am getting better and while it is a long time until they use the C word (cure) I am thrilled to start thinking about the future again. Like summer vacations and going back to work. But starting small Amira says she wants to go out to dinner as a family. I’m not there yet but hopefully soon.
Family movie night!