And Then There Were Three

First, a side note. Japan weighs heavily in my thoughts… Not just because I love George Takei and Michio Kaku (I had this dream where Michio Kaku came by our house and offered to explain string theory to me, or maybe we’d just play Wii and board games. I don’t know what I opted for. I think if I were smart, I’d have played with him, because I think he’d manage to work string theory into Mario Kart racing. Or Boggle.) I have a few friends (most live in the States now, but have family in Japan) and I hope that they’re all okay. Of course, I wish everyone could be okay, but y’know… that’s just not in the cards.

Japan is one of two places on my bucket list, too, you know. My bucket list is pared down to the places I really want to see more than anything, or the ones I really want to see and are possible. Japan seems remotely possible (quite remote, but probably a better bet than, say, the closer Machu Picchu). The other place — don’t judge, man — is the flagship Bass Pro Shop. No, seriously, it is. It looks frickin’ awesome.

My visit with the surgeon for the one year thymectomy follow up was rescheduled last week. I am always just as happy to know that I am not the one getting that emergency surgery, so no biggie. I saw him yesterday.

Look! A turtle! I actually really like this guy, and not merely for his turtle like features. But here’s one of those things you sort of get this uneasy feeling about…

Surgeon: You look good. Really. Better.

Me: Not feeling it… but you know… (Side note: I have felt a shift in the past week or so. These things happen. It’s not a shift to a better or worse stage, just a shift in nature of suckitude. Sometimes this is a relief, just to feel a bit of change, but at this point, it’s kind of down so low the shift is just a brief change of scenery. It will shift back to where it was, and back here again.)

Surgeon: I have your CT here, and it looks reasonably… well, why don’t you tell me what’s going on first…

[Ding, ding, ding! What’s up with this?]

So I tell him.

The deal is my chest CT looked pretty decent. My thymus has not grown back (which is a concern… I guess it wouldn’t be thymus really, but more of the naughty crap I wouldn’t want). My lymph nodes in my chest were looking well behaved. My one nodule hadn’t changed for two years now. And the other two nodules…

Um… Where’d they come from? When? Seems I picked up a couple more (different lobe) in the past year. I believe they are a little smaller than the first, which meant the answer to the “how are things going” question was going to influence how the CT was interpreted. It means I get a follow up in a year again (and I have to call Dr. J because… this was one of the things he said needed an eye. One could be incidental, and nothing at all. If more start popping up, it’s a little more of a concern.) I half suspect I might be followed up in six months.

The chances of these guys showing histiocytosis or some other cancer would be slim, I think. And truthfully, there’d have to be more than three even for anyone to get their knickers overly twisted. But I think the concern centers more around things like interstitial lung disease, fibrotic sorts of things that result from histiocytosis, and sometimes other malignancies or neuroendocrine and connective tissue/collagen-vascular mess ups.

I mentioned that I was turning blue, and getting cold, and having a hard time breathing periodically. Surgeon asked if I’d been diagnosed with Raynaud’s (I suppressed the eye roll and loud, annoyed sigh). I told him it happens in this order: I do something mildly strenuous (like making the bed) and I have a hard time breathing deeply. Then I get blue, and then I get cold. Not hands and feet and things… deep, all over, to the bone shivers.

He said to ask Dr. J to set me up with regular pulmonary function tests. My last two were normal. Well… First one was damn near perfect, the next year it was still great without the albutrin inhaler, but it was better with it (and the inhaler made no difference first time). This is… what they see sometimes. And the surgeon said that a pulmonary function test is going to show degrading lung function faster and better than imaging, and… an earlier catch makes quality of life better.

It makes sense. The surgeon mentioned that connective tissue disorders do this sort of thing, and I said, “Yeah, those have all been pretty much ruled out conclusively.” And he said that indeed, histiocytosis also has this habit… as do a few other related things. It just takes time.

This really is going to be a whack a mole till we connect the dots. It’s just that dot connection could mean waiting for… well, more dots on lung CTs and stuff like that.

I see the ENT for the low down on the temporal bone imaging and vestibular testing next week. Here’s my prediction: What we saw suggests this, or this, and we don’t know what causes these things, and maybe you’d do better to see x specialist. Let me refer you. Just so you know, I’m pretty clear on that. Heh.

In other news, it was almost warm enough out to take some photos without losing my fingers. I liked this one:

Three Old Birds Sitting on Front Porch

This entry was posted in Getting to the Point, Langerhans Cell Histiocytosis, Photos, Hobbies and Worthwhile Stuff, The Bad, The Good, The Ugly. Bookmark the permalink.

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