I was going to actually just write a note to my mom, but you know, it’ll be put here anyway and I’m burnt. Also, isn’t everyone a mother somewhere, y’know, deep in their souls? You can feel free to add a suffix to mother if you want, because it still holds true in most cases.
Let’s just say the trip to Dana Farber (which was actually on the Faulkner Hospital campus for me…) was productive. First: Faulkner Hospital has some clean freakin’ bathrooms. However, my brain was slow as hell today, so I had a hard time working the first toilet paper dispenser and I fear I may have broken the second one. Sorry.
The DFCI office there had that whole MGH vibe — I knew it would. Truthfully, it’s pretty rare to run into someone who deals with patients or the public that isn’t very pleasant. The person in question might not be particularly helpful, but they do try, and they’re nice about it all.
I had my vitals done once they checked me in, and I think I need to talk to my sweet GP about the fact that there might be a need to bump up or switch beta blockers, as my blood pressure and heart rate remained astronomical and orbiting… My heart rate was a surprise, moreso, cause I didn’t feel like it was racing. I figured my blood pressure would be high — they always figure this too. But it should have come down. And it didn’t. Like, at all. So that’s kinda not a good thing. Also not the first time I saw those numbers this summer, so I’m kind of sure we’re seeing a trend.
The doctor was great. I mean, I think he must imagine I’m a drooling idiot (actually, I’ve been drooling a lot again, which usually means the mouth sores are coming)… You wouldn’t have known I was capable of speech in his office. Emphatic hand gestures, sure…. Word order? No, word order was a point lost on me.
He said that diabetes insipidus with a pituitary cyst and lung nodules tend to make doctors think of histiocyte disorders, and while rare, working up is certainly not inappropriate. I say that diabetes insipidus and lung nodules tend to make doctors act like poultry, but hey… Of course, here’s the kicker: they’re taking a new look at my slides, but really, he doesn’t expect that my thymus was revealing much. My lymph nodes weren’t large enough to think about a biopsy (he also said that many of these disorders will cause them to go up and down, just like infections will, but of course… no infections.) I’m curious as to why we don’t do a skin biopsy, except that given the nature of histiocytosis (often includes skin cells of some nature) it wouldn’t be conclusive in and of itself. So we’ve got two things we could poke: my pituitary and my lung. He said he wouldn’t be inclined to do the first since it’s frickin’ brain surgery, and removal of the cyst most likely wouldn’t even get rid of the diabetes insipidus. Like the thymus, it’s also not terribly indicative all the time of what’s going on (other than it shouldn’t be there) and is risky being frickin’ brain surgery. I’d rather not have them do that. Ever.
The lung biopsy would be fairly involved as well… Potentially more revealing, but a smaller version of the thymectomy. Believe me, through the ribcage surgeries — however minimally invasive — are really invasive.
But I’m going for a pelvic and abdominal CT in early September, given the fact that I feel like I have turtles shoved under my lower ribs whenever I get dehydrated (which is often) and while I sure can pee, I sure can’t do without stopping and starting. Masses outside of the organs in the abdomen are often found with this stuff, I guess. Since long bones are involved often too, he ordered a skeletal survey (same time). Then we talk.
If we see something, it’ll get looked at further. But the vibe I get is that this is a decent enough suspect, but can remain one in a very spectacular manner for years and years before pinning down. So I am to get follow ups yearly on the brain MRI, and my chest (of course, I was supposed to on that front… I said, “So what… thymuses grow back?” Yeah. They can, if they decided to go all rogue in the first place. Awesome.)
The trick is to make anything invasive count. I’m fine with that (I said I just draw the line with my brain, I really can deal with the rest, if it actually makes sense to do). So for now we’re looking at the most likely affected areas one sees with this sort of stuff that we don’t already know suck ass and remain off limits.
In the quite likely event (his words, and I can’t argue with history…) that we see something odd and it tests inconclusively or we see nozzink, there is still something not right. And you don’t just walk away. Since I was helped by prednisone a bit in the past, he is willing to make the case to prescribe it to my current doctors (I think my GP just wants the backup). It doesn’t mean that it isn’t a histiocyte related disorder, it just means they can’t say so for sure… and they want to say so for sure because treating those, in his words, makes prednisone seem like a walk in the park. But the key is that something needs to be done to keep quality of life somewhere on the actual quality of life scale while minimizing prednisone side effects while we see what develops.
I get the sense there will be developments, however slow and scattered, either way. I get the sense he thinks this (like I know the doctors who know me here do) but there’s no damn way of telling what is appropriate until something goes awry to confirm what treatment is best and how aggressive it ought to be. Right now, he thinks prednisone’ll be a decent candidate should nothing else be clarified directly.
So it ain’t happy news, but the long term prospect of sitting here like a big pile of human laundry is far less appealing… Thankfully, it looks like it won’t be my fate no matter how testing turns out.