The View from Where I Stand

A good analogy to describe my health plan right now is that we know I’m going to have to pee really, really badly sometime in the near future, and I’m stuck for the longer than near future inside Penn Station, where the custodians have all gone on strike. Also, the toilet paper factories have all shut down — just like my grandmother always said they would.

Well… sort of. Prednisone taught us all something. I have had blood tests for years that were just not showing real inflammatory responses. I looked like I was having inflammation. I suppose it must be in a way, still… But I responded less than I thought I would a few years ago on prednisone. I responded less — in fact, things have progressed — this time. Therefore, it would seem I really do not have inflammation in the traditional sense.

Friday was a long day. I saw the very awesome Dr. J at Dana Farber (in the nifty new building). It is a nifty new building. It is a lot less confusing, though spread over many more floors, than the old building. I had my blood drawn. I went up to see him. The nurse had a stroke over my blood pressure (I think my heart rate is finally dropping below 100 beats resting, thanks to an increase in propranolol, at least). She immediately dropped the automated blood pressure cuff and grabbed a manual one. I said that I usually tend to look a bit… well, less likely to spontaneously combust when a human takes my blood pressure. She said that wasn’t unusual. Of course, it was still high, but it wasn’t so high that they were paging the cardiac surgeons to be on call for me, either. No, trust me, this has happened.

I am tapering off prednisone. I will be off it entirely next week. I am evidently a problem. I am evidently a problem waiting to happen. The deal is this: they found a tumor in my ass cheek (well, deep in my hip, but not off a bone, more off a lymph trail) that is indicative of histiocytosis. It did not look like a malignant histiocytosis (which is a weird thing to say… I mean, Langerhans Cell Histiocytosis is not technically considered cancer, or a malignancy. It can still kill you if it should decide to. But there are malignant histiocytoses — I think they usually end up in the sarcoma or lymphoma category once they get there though.) Because I now have a history of histiocytosis, I will be followed, with a complete work up for it, by Dana Farber till the end of time. They have me. Yes, I am complaining, but you know damn well I am so not complaining.

But the ass cheek hip tumor was not really… It was a real surprise to me. I have other issues. These other, wider, systemic issues are often seen with histiocytosis of a more disseminated form… or infectious diseases, or immunological diseases, or malignancies. Let’s put it this way: We’ve ruled out the infectious causes. There aren’t many. We really worked the hell out of the immune diseases… and they would respond to prednisone, at least in some regard. Never mind that I tested negative for every last one. In general, histiocytosis in a milder to moderate or at least not disseminated form ought to also respond moreso than I did to prednisone.

This means a few things… I could have a disseminated form of histiocytosis that is just going to take time to pin down, because… it does. I could also have some other malignancy that is either a byproduct of or peripheral to or a natural progression of the histiocytosis. In any event, it does mean we wait and watch and try to deal with it until it shows itself, because depending on what it is… chemotherapy is not one size fits all. In some cases, it would actually be counterproductive if they called it wrong.

I hate feeling like crap, because I can’t do anything, and I hate feeling lazy… I remember telling Dr. J halfway through the visit he had to forgive me as it was honestly past my bedtime. I appreciate that he doesn’t want to do something that could kill me or have no effect as easily as it could help.  I appreciate more that he’s very willing to say that histiocytosis is a part of the picture, a hugely debilitating part, but the whole picture is not in focus yet.  I guess at least we have a mechanism of sorts for what’s going on now. My blood is composed of a bunch moronic cells that develop all stupid and are being quite secretive still (and creative) in their moronity.

He did take a quick glance at my labs as they came in (I think there was some stuff not quite consistent with what they should see with someone on prednisone. Of course, I should have a high white blood cell count… but I think there must have been something more that was counterintuitive. I know I’ve had blood tests on prednisone, but man, I have never seen one so flagged… only one thing was flagged red. And I knew that one… That one made sense).  He also looked at the report of my temporal CT. And then he ordered more labs, which I couldn’t do that day… and I don’t know if I can just pop in and do them.

I do know my CT was not exactly what it ought to be either. Number one, I saw they mentioned the TMJ surgery I had (that I’d forgotten entirely) years ago. I guess it was obvious I’d had it, even though it didn’t make much of an impression on me. But yeah, whatever. Seeing as my right side was mentioned with the words protrusion and orbit, and not my left,  I suspect that there is something going on in the area beyond the usual “nobody is symmetrical” line I’ve gotten from doctors in the past.  I didn’t get a good look at the report, and I don’t see the ENT for another month. I would suspect she’d call, but then… that was actually what made Dr. J go from saying “I hate to send you for more lab work…” to “I’m going to send you for more lab work, I think.”

The pisser is I might have a long haul ahead. The other pisser is that I might not, I might just have a haul. I have a haul either way. C’mon. It is an uneasy feeling to say to a doctor — now, finally — look, I think this isn’t something that’ll kill me in the next three months, or six, or twelve months, but if something doesn’t give and get dealt with pretty damn soon, I just can’t see that we’re going to need to worry about the long term implications of anything we might try in the short to mid range future — and not have the doctor kind of put off those fears or disagree with me or try to say it’s okay.

You think things like this kind of show up either as big honkin’ clear tumors or wacky ass blood results or funny incidentals that… holy cow, you have something nasty going on, or will soon. I get the impression it doesn’t always work that way. I don’t think my case is the way it works usually either… But I am gathering it happens enough that they know at this point, histiocytosis aside, what it is going to blossom into or what it is that is turning on the other nastiness, is a wild card. I think it’s also clear to everyone it is going to blossom into something… or at least, there’s no way I’m leaving Penn Station for Kansas again, ever.

Send toilet paper. At the very least, I can put streamers up all around Penn Station while I wait.

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