Tick, Tick, Tick….

Hear that?

The sound of nothingness. Not silence… You sure can’t call the air conditioning unit in here silent. Three days post-surgery and Penny’s hacking cough is a little less frequent, courtesy of cough medicine (thankfully supplied in handy pill form by the vet. Nothing worse than a Robitussin covered pug).

Penny’s doing just ducky, as she likes it when medicine comes wrapped in yummy stuff (and because she has a large, clumsy tongue, she’s not nearly so talented as Norman was at extracting the medicine from the tasty stuff and spitting it somewhere.) She has three fewer teeth, and her breath is much better. She is wearing a cast that makes us want to call her “Stumpy.” The vet said the tumor looked aggressive, but I think that’s a matter of it being on her leg and being fairly large, maybe with not so clean edges as they would have hoped (though I gather that isn’t necessarily unusual or horrible). Pathology will take a week or so.

I realized Wednesday evening that the pulmonologist who performed my cardiopulmonary test actually said he’d have the results to the ordering pulmonologist on Thursday prior to the test being done — back when he thought I had superhuman lungs and had not a real reason to think he wouldn’t see anything that wasn’t fairly straightforward. As he put it afterwards, there’s a lot of output on the tests, and while the computers do the basic math, it’s good to double check anything that it flags, double check that nothing quirky wasn’t missed entirely, and then, if the various results don’t plug into an easy single category, you kind of have to do some detective work and proof reading.

Maybe even in those circumstances, everything being perfectly clear, Thursday would have been overly optimistic (I mean, stuff happens). I didn’t know. So I called my pulmonologist and left a message.

Friday came and he called me back, mainly to say that he wanted me to know he wasn’t ignoring me, but the results weren’t back (he said something about incomplete preliminary stuff, too, which leads me to believe there was something odd, but you can’t just plunk that down right away when you can rule out or identify what the culprits might be on the same test). He said that the tests can take a bit to work out because there’s a lot of things that they look at and where and how they react in the chain of events and what it all means is complicated (he admitted he had no idea how to actually read and interpret the data once calculated, except for the specific pulmonary aspects, which again, is only a piece of the puzzle). There’s also sorting out from that what issues they see are contributing to each other or which need to be a priority. You know, I know there’s been some deconditioning, for instance. I can’t do a hell of a lot. It stands to reason. It was probably evident on the test (I know it was), but it isn’t the cause of things, I know, and I think they did see that… but on top of figuring out whether the problem originates in my chest itself, or my blood, or my lungs, or my heart — and if they should find (for example) my muscles are being difficult, is it causing my lungs to be a problem and then that messes with heart rate and blood pressure and flow, or is there something independent of the muscle thing making my heart be silly? And which is more important to tackle first? Will addressing one area make the others better?

So I get why it takes a while, and I was actually sort of glad to hear on Friday that the results weren’t back yet. If they’d been done… even reported as finished, but awaiting transcription… I’d… Well, I’m not happy about any of this, it blows, and even getting the problem identified and the parts that could be fixed actually fixed feels like it’ll never happen. But I am really glad I didn’t get handed a knee jerk “clearly pure deconditioning” or “clearly exertional asthma” line… I mean, if it were exertional asthma that’s one thing. Asthma’s a nasty, scary, potentially life threatening thing. I also know damn well it’s not what’s going on, but I also know it’s one of those diagnoses that’s easy to just hand out.

I know this’ll mean more tests. I am not liking this idea. I think it is probably inevitable.

The pulmonologist at Dana Farber (who is the nicest guy. I actually can’t say enough about anybody there… I mean, it sucks to have to go there, but if you do, at least they understand what you are dealing with and because everyone else who goes there deals with… well, longer term shitty illness at the very least… it’s actually a much less stressful place to see doctors than a general hospital)– anyway, he’s also on vacation for a bit now. The other reason he called was to tell me he had me covered because he didn’t want me to have to wait for two weeks if the results were in. He said he didn’t think there’d be anything imminently life threatening (within that time frame) that they’d uncover in the results (and that’s always a weird thing to hear… It is weird to hear that they could find something after five or six days of analysis that could mean your time is measured in week increments), but that he didn’t think it would be cool to have me wait that long if we could do something sooner.

I’m going to be waiting. And while I do worry about why it is so damned hard to do what I could do a month ago and impossible to do what I could do a year ago and it’s not that I haven’t been trying… I worry about what the longer term effect of that’s going to be, because I don’t want to bust further what’s broken (and I will… I get bullshit, and I push too hard) but I don’t want to lose what is still working, as I kind of need it. Plus, you know, this isn’t really how I want to be spending my time. I’ve spent way too much time like this.

I don’t worry about dropping dead in a two week time frame. I worry about the next two weeks being just like the last two. I think even identifying some of the troublesome end results of whatever the issues might be and appropriately dealing with them will make life at least somewhat easier. I think it can be done, but given the bigger picture, it does have to be done right (or at least logically).

I appreciate it, but I don’t have to like it.

At any rate, I think the wait probably means it wasn’t quite as clear as the pulmonologist who ran the test thought it might be. I think I’m okay with that. But I’ll know when they get back to me for sure how okay with that I really am.

This entry was posted in Langerhans Cell Histiocytosis. Bookmark the permalink.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>