I woke up this morning with what I think is an open-and-shut case of Graft vs Host Disease: the tingling pain in my hands (palms, especially) and in the soles of my feet is not entirely new, but the refreshing sleep I had just gotten meant that I could regard it in isolation as a distinct symptom, not just as more of the same skin rashes that are generally compatible with GVHD. I reported this epiphany to my nurse, and on the strength of it I got a quick dose of oxycodone, as well as a promise to raise the issue with the doctors when they huddle later on this morning. We’ll see how Dr. R. feels about this latest development; I hope my hard-won walking privileges (granted just yesterday) aren’t going to be revoked. Maybe I should go for a walk now, just in case…
[Time Passes]
Well, Dr. R. sure is a tough nut to crack; after I proudly displayed my stigmata, as it were, she patiently explained that she still doesn’t think we’re dealing with GVHD, despite all these juicy symptoms, and despite the fact that they’re going to treat my new symptoms as if they were GVHD. So I’m now getting Gabapentin, a painkiller that works on nerve pain and is also used to control epilepsy; it is also seeing a rise in recreational use, apparently.
Anyway, given the fact that her junior colleague on the attending oncology team has twice sided with me in seeing my symptoms as GVHD, I’m wondering if there is a generational/terminological issue here. Maybe Dr. R is from the old school, where calling something a “disease” suggests that something dire or life-threatening is involved. In a way, it’s nice to hear that she’s not calling for desperate remedies in my case; the rashes and palm/sole pain are not part of what she thinks of as acute GVHD, which is the only type of GVHD she is concerned with. She may also be less “up” on the various statistical probabilities of cancer recurrence post-transplant than my usual oncologist (which is likely enough, since he has a real rep for his expertise in such matters), and so she may be less interested in looking for signs of less-acute GVHD. That doesn’t mean she doesn’t know her business; she evidently does. Besides, my walking privileges remain intact, Monday remains a reasonable best-case scenario discharge date (though admittedly Dr. R. was less bullish about that prospect today than she was yesterday) and my most recent c-diff sample came back negative. So what am I even worrying about?
Congrats on beating back the c-diff. The name makes it sound difficult to get rid of, but in my case and evidently your case, no. More congrats on engrafting and not having double pneumonia. Again, I’m feeling optimistic and hope you are too.
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Brad, this may sound strange, but I’d love to hear more about the effects of the painkillers. Who hasn’t read about this or that person’s addiction and I’m curious what about them is so addictive. What do you feel when you are medicated with them?
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