A vignette from the hall of mirrors in which I live (think of me as a guy in an unpublished story called “Lost in the Not-So-Fun House”): people rush in to say urgent things to you, but don’t have time to answer questions about their implications. They depart, promising to come back with their higher-ups, in a few hours. This full-two step dance was accomplished this morning by two doctors from Infectious Diseases, who at first rather vaguely as a single human and then, in more detail as two, assured me that they were very concerned with getting my c-diff problems in check (which I certainly appreciated, since my oncology team really don’t seem much bothered about the c-diff detail at all, what with my numbers looking so darn stellar and all). The ID folks’ big change of plan, though, was slightly to increase the dosage of the drug they’ve already been giving me for this purpose. So much pomp and circumstance in this “urgently incomplete/delayed information” dance, but lacking in the Big Reveal department.
Then this afternoon the first step in this very same dance was just performed by a doctor from Dermatology, who stopped by to announce that the skin rash biopsy they’d done showed that the rash was consistent with graft vs host disease. No time for idle chit-chat, though—tootle-oo!
Ah, excuse me?
Can we talk about this for just a second before you go off, shake someone else’s hand and hit them between the eyes with a point-blank bombshell?
Well, I was so downcast that I couldn’t get any of these syllables out, so I am awaiting the second visit at some point this evening. But, I tried to reason with myself, and still do, along the following lines:
Just because someone makes you the victim of their tactless manner of transmitting information doesn’t mean that it is necessarily bad news.
But this means I have Graaaaaft Versus Hooooooost Diseeeeeeeease!
Not necessarily. Just that the rash is consistent with it.
But let’s be real. It’s probably GVHD.
Maybe so. And even that is perhaps a blessing in disguise.
Your oncologist has been saying all along that he wants to see some GVHD in your case, because if there isn’t some of that Graft vs Host effect, there will be no Graft vs Lymphoma effect.
Ahhhhh is right. You remember now what we’re here to do? To get rid of that cancer thing you had, the really rare type of T-cell lymphoma, with the lumps? Well, if these rashes are relatively painless, benign manifestations of GVHD, so why not? There are a lot worse options for GVHD.
You don’t have to remind me.
We left it there, more or less, and when the doctors returned, about 4 hours later, I was able to take their confirmed, shared, mutually sanctioned opinion (that not only were the rashes consistent with GVHD, but that they were almost certainly their product) with a certain degree of calm. I asked whether the rashes were indicative of a link to a more dangerous organ-based version of GVHD (answer: no), whether they had to be treated with their special steroid ointment or another antibiotic cream I happened to be using (answer: predictable bias toward the former), and whether they had talked to my oncology team about this finding yet (no, but they surely would).
Now would that have been so much harder 4 hours earlier, with only one doctor instead of two? Answer: none. (Question not really posed at the time).
I hope this shows you guys how incredibly important it is for me to have this blog, and some readers; a forum where I can try to piece together a gigantic puzzle that nobody, not even my esteemed, even revered oncologist (who never does these kinds of dances as far as I know) can always be on hand to explain.
So thank you for being you, the great, sane reader in the ether…
5 thoughts on “Day +14”
It is so frustrating when they won’t take one extra minute to answer questions and give the patient some peace of mind or at least a more accurate focus. We had similar experiences lately with docs at UCD: nine hour wait for CT scan results, for example. No time for the patient. Hope you feel better soon.
Reading daily. Keeping you in my thoughts every sane moment.
You might subtly leave the url of this blog somewhere in your room… It is a lot to ask the patient and family to be making sure everyone is talking to everyone else, but it sounds like you guys are on top of it!
I read you every every day. You provide hope, humor, not to mention insight. Will you write my blog when I might need it???? Always glad to read your inspired writing–sorry you are there but happy it appears to be working!!! Peace and hope for a better day tomorrow. CK
Brad, your ability to write through all of this is amazing.