When Progress Doesn’t Feel Like Progress

First, it must totally suck ass to be a doctor. And of course, there are areas of medicine that must suck even more than others. I think primary care sucks in its own unique way… You’re the first medical professional the patient sees (and sick people suck, I know. I am one.) and because you are a generalist, when you refer someone who isn’t necessarily textbook to a specialist, you get the lovely couplets “your primary care knows nothing about the amazingly complex and awesomeness that is my speciality, and your primary care is supposed to know everything to put together your bigger picture.” I think oncology must suck, of course, and anything that deals with stuff that’s just… hard to fix. Nephrology. Crap like that.

Anyway, one of the things that was mentioned at my follow up was that the road ahead would depend on a number of things. Dr. J is not overly fond of the idea of doing chemo because of my decidedly lackluster response to the prednisone (and what does it say about me that I still think lackluster beats no luster at all… but truth be told, this is doing it again well and truly. And I fear what I would be feeling like without any prednisone at all. No… I don’t merely fear it.)  The idea is that some patients with a pretty piddly response don’t see a good return on the time and effort put into chemo, so perhaps a longer term approach as a chronic thing is better from the start.

But it’s hard to tell, and sometimes I am guessing they do have to step in with bigger guns (and then smaller ones, hopefully) now and again. The problem with histiocytosis as a whole is that it is variable from person to person within the same set of disorders… and the disorders all tend to look the same either symptomatically, clinically, or pathologically… until they really, really don’t. So you have to play wait and see. Wait and see what helps. Wait and see what breaks, and then what they can tell you about what’s broken.

Prednisone isn’t going to cut it. Maybe in a good stretch, as a pre-emptive, along with something else… But this is not going to fly. The good news is there’s not been a complete crash and burn (and I know that this is an impossible thing to say for sure, but I am feeling as though I would not be lying in my bed at home with a laptop and a gurgling pug if I were not on it right now.) I am definitely taking another spin around that drain, and I am thankful we at least know what the process going on actually is, even if science knows very little about it from there.  I am thankful it is very clear this is an untenable situation… I mean, it was beforehand, but it remains so and is still doing its thing, even if I’m holding up a little better than I probably would have been.  But the last week or two have made it abundantly clear that stopping this in its tracks has probably been impossible from the get go, and that slowing it down and staying on a more stable course could happen via several means. I think we know prednisone is a booster now, and not much else.

This is how we learn. Yep. That’s me. Science in frickin’ action.

This entry was posted in Getting to the Point, Langerhans Cell Histiocytosis, Living with, Not Otherwise Specified, The Bad, The Ugly. Bookmark the permalink.

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