I went for the four week follow up at Dana Farber on Friday, which was good. By good, I mean, I was really incredibly grateful to be there, because for the past week and a half, I felt pretty crappy, with the last two evenings being… a little more exceptional in the presentation of what was worrisome. Now, the good news is I am sure I have prednisone to thank for being able to think clearly enough to decipher the truly scary from the potentially scary down the road from the merely annoying. The bad news is is that in some way I think I have to say the prednisone was at least contributing mildly to the truly scarier aspects. It is a good thing to know, though, and one I probably should have expected, given that it is something that periodically threatens to go nuclear and then quiets a bit. It’s a kidney thing, or something at the very least related to the kidney area — and I can say without reservation it is in no way, shape, or form related to the diabetes insipidus. Except that maybe I have an impaired thirst response, which probably would complicate both ends of the spectrum.
So I guess my kidneys are still testing fine (then, I guess they do until they are really messed up) but my left in particular is being a real douchebonnet, so we are being careful. I was also feeling quite bloaty… Part of that was water retention, part of that was the fact I swear my lymph nodes just get their jollies trafficking huge amounts of crap into the most inopportune places whenever I hurt.
I am now taking 40 mg of prednisone, and truthfully, the lessening of the kidney annoyance makes up for the lower dose (and I smell a lot better… I am sorry. I mean, it is a hard thing to say. It is insult to injury.)
That’s kind of the good news, though.
Truth is, I should feel a lot better. I mean, I do feel better. Do not misunderstand. But just like when this hit three years back, I took the prednisone, and I felt… well, not like I was going to just drop dead instantly. And that’s about it. But it is better than feeling like dropping dead, right? Right. I knew then I should have felt better on it. I have taken it in the past for shorter stints on lesser doses and felt better in a few days… and not just the normal old “cortisol makes everything zippy” reaction. Things felt better. I was surprised last time the reaction, while positive, was not… like it used to be.
Things do not necessarily feel better in this case. In fact, my stupid ass carcass is doing what it does when it acts up pretty much to the letter. This is historically one of the times of year it is really, really bad.
And that is why I really wish it had been lymphoma. Because here’s the deal: histiocytosis comes in many flavors and forms. These have overlapping symptoms, sometimes. Sometimes they have distinctive ones, and very few are documented enough to say what works or what doesn’t and things indicate what might help one person could potentially harm another or at least might be worth holding off on until it is clearly the only option.
The fact that I’m kind of really not responding to the prednisone — I feel better, but the disease is continuing on its merry way like it does — is not really a good thing. In my case, there’s a disconnect where they found the histiocytosis and where the other very-histio-like features exist, and the idea of trying chemo doesn’t sit well. It might well work, but based on what we have seen, it’s not really easy to tell, and you don’t want to go killing off cells indiscriminately. I seem to be one of those cases that’s kind of… widespread. And those generally aren’t so clear cut.
So we back off on the prednisone, in deference to my kidneys and the possibility that side effect and benefit balance might work out better this way… and I see an ENT next week. I have no clue if that will shed any light on anything, but certainly the inner ear and balance issues and lovely tonsils will be entertaining and are consistently part of the picture… with or without prednisone. Then there’ll be some discussion with some neuromuscular and rheumatological people (yeah, my two favorites. I requested again that the rheumatologist that I saw at the Brigham please not be brought into the conversation. That man needs to spend the rest of his career in a freakin’ time out. Sorry) to see what we can possibly try to improve quality of life (or maybe achieve quality of life) and then maybe keep the stinker at bay.
I am not surprised that the idea of this going into remission has been laid to rest… And I can’t say I feel any more or less disturbed by the idea of interferon or biologic management over chemo. Whatever gets the best results with the least amount of heartache… and truthfully, this is a time for me that would be trial by fire for anything I might try, so I believe there are times of year prednisone might serve me better if we need to cycle through.
My mom asked if I was discouraged… which I thought was kinda funny. Well… Not as much as I was a year ago. Or a year and a half ago. I am slightly pissed at myself for allowing myself to believe it might really be that easy. Again, I wasn’t so sold on the idea that this was going to just pack it in and go after all this time and six to twelve months of treating with anything. But I was hoping it wasn’t going to be one of those sorts of all over the charts deals where sometimes the best you can do is recognize that any new problems could potentially be related to the histiocytosis, and test accordingly in order to save said organs. And it seems I am all over the charts.
The key thing is that I am right here, right now, in probably the best place with the best people who have access to the best research and technology that there is… and that there hasn’t been any significantly huge amounts of damage yet. I was given a real pass there, and it puts me in a really good position and I am lucky. I don’t think I am going to get a blow off from anyone there now… If I were, it would have happened already, and truth be told, if they were so inclined to believe it could be the case, my ass cheek histiocytes would be relegated to the weird-but-people-all-have-weird-things-happen-to-them file, with my thymic hyperplasia and my pituitary stalk thickening and my diabetes insipidus. Uh, yeah, and my lung nodule. And the real kicker is the lung nodule is the only thing that might actually be just one of those weird things that kinda sometimes happens.
Anyway, computer making me motion sick. I figured someone might be wondering though.