The library science world has a lot of bad ass sounding terms: controlled vocabulary, authority control… Most of these bad ass terms embody the idea that information and the language used to describe and relay it, in order to be of any use, needs to be defined, standardized, and uniform. It’s not really easy when you think about how fluid language is and that both language and “harder” sciences (facts, even) are constantly changing.
Lots of professions have their own terms that mean something specific within the field. It’s pretty evident in medicine. I am told that every thymus that is enlarged is technically malignant, even when it isn’t cancerous. A malignancy in most doctor’s minds is cancer. It’s kind of a stupid rule to have, though, because sometimes it clearly isn’t cancer (and they don’t remove them… removing them is a big friggin’ deal) and while the books and surgeons will tell you they’re all malignant, when they pull them out and everyone else (even oncologists who specialize in chest tumors) sees that no cancer was present therein (despite what else might be spotted) the fact that all are considered malignant whatever the findings are doesn’t stick.
Another example: The doctor who ran the cardiopulmonary exercise test said that they’d found no holes in my heart on the echo. Well, no, that’s technically not true. They did. It just isn’t what is causing the current situation, by the cardiologist’s reading (I told him this.) He said, “Right, there’s no hole.” No. There is a hole. It is not my problem right now. I understand this. But it is there, and when I have, say, a surgical procedure I have to tell the anesthesia guy. It’s one instance where it could become a problem. If we start writing that there is not a hole, or there’s a question of a hole on our reports, the anesthesiologist gets bullshit at me. (Have had it happen.) He isn’t going to go back through the echo reports for years and years potentially to find out if it was actually documented by a radiologist. He’s going to tell the next soul down the pike that I need an echo and bubble study though.
I have had too many bubble studies. They aren’t dangerous, or hard, or anything, but you should, by rights, only need one. The bubbles have revealed the hole every last time, and the hole is not significant. If this was just left as is on the record and no one transcribed the mental shorthand of “incidental finding, not significant to presenting problem” as “questionable PFO” or “uncertain finding of PFO” (it isn’t uncertain, it’s just not my goddamn problem.) I probably wouldn’t have to keep getting bubble studies.
We’re not going to even discuss the tubal pregnancy I never had. I didn’t lose it, I never have ever been pregnant ever. Ever. It is not why I had a ligation. No lie, I think the poor doctor who wrote that was reflecting her fears on to me. I feel bad about that for her sake, but Christ Almighty, she essentially made shit up. Horrible shit. I also feel it’s better that it was on my record and untrue as opposed to it having been the case and not recorded. It isn’t really a great feeling to have to say to a nurse — who is convinced that I must have simply forgotten what I imagine would be one of the most traumatic events any one could ever have to go through — that that sounds like the sort of thing that I would do damn near anything to forget, and never ever could. Trust me, it didn’t happen.
That doctor who actually put that on my record was one who did rounds at the hospital (not a regular for me). I saw her (the same visit that the nurse asked me at length about the non-event) waddling around looking about 45 months pregnant. This was a year or so after the mess got on my record to start with. I am happy for this doctor, she seemed charming enough. If anxious. (Cough). I get that she’s human, and makes mistakes, and I think she had a horrible thing she had to go through when she saw me that day, and was preoccupied. I am happy that whatever she was carrying when I spotted her next seemed… large and healthy, especially if she were giving birth to a baby camel. I was bullshit that her anxiety (and it was her anxiety, folks) reflected on me and made my life difficult. I mean, I am mildly amused by the interrogation about the non-event of the tubal pregnancy, because it was a non-event for me. I was less amused when she’d called the social worker the year before to deal with my anxiety (and told my doctors that I “refused medication” because I wouldn’t take an Ativan script. Ativan made it harder to breathe, since there was muscle involvement, not anxiety.)
What am I getting at? Oh yeah. The very sweet pulmonologist told me, since he’s on vacation, to talk to my beloved Dr. J at Dana Farber about the results of this exercise test. He said that if Dr. J had questions on the findings (and it was said in such a manner that I got the real impression he expected it would be mostly Greek to Dr. J…) that he could talk to his colleague at the Farber. The pulmonologist said he didn’t think it was a situation where two weeks would mean life or death, but it might be nice to know what the hell is going on.
I wanted to know where to next. I don’t really imagine that I’m going to kick off in the too near future, but for some reason this doesn’t feel like the sort of stuff that should take this damn long to order and work out tests — especially without managing the damn symptoms which are friggin’ nearing unbearable far more than I’d like to admit lately. I know that it can be done. Or tried. And it might help. I do not care what this is. I don’t care. I don’t think we can really know, or stop it, but maybe if we can make life something manageable right now — maybe that could help things getting worse. It’d certainly make me a nicer person.
But I should have known. This isn’t really anyone’s fault. I called hoping to speed the process, get a clue… And Dr. J is not a pulmonologist. He’s my oncologist, he deals with boatloads of weird shit. He got a report dropped in his lap that makes a lot of pulmonologists weep in terms of “what all does that mean” and a contact number. He has other, really, really important shit to do. I mean it. And if it comes to phone tag with a pulmonologist he isn’t familiar with who is covering for the one he does know, and this pulmonologist hasn’t seen my case about results that obviously aren’t immediately dire — and both the covering pulmonologist and Dr. J have patients with lung cancer or needing stem cell transplants arranged post haste… I was sure as hell not going to ask for clarification on what Dr. J told me. It can wait another week and a half.
But from what he told me, I was sorry I called and asked at all. I could tell he wasn’t real clear on what the actual report said specifically, but the upshot was the scarier bit — that something was completely fubar’d metabolically — didn’t seem to show any significant abnormalities. I mean, that is good news, because those are things that if I feel like I do and they had found them, there’s likely not a whole lot they can do to manage symptoms and even if they can for a while, at some point, who knows when, the bottom drops out and it’s ugly.
The other thing which of course threw me over the edge and I realize it should not have (think controlled vocabulary) was that I showed some mild deconditioning. Okay. I told you guys this… Deconditioning. No shit. I mean, I can’t do anything. That will happen. Here’s my question: How on this melting little blue marble could I be mildly deconditioned at this point? Mild? I made it through the exercise test. Was it hard? Yeah. I mean, I felt it. My knees just weren’t there randomly for a half hour after the test (they didn’t hurt, they just failed to show up and keep my leg from buckling). My ass hurt from the elephant size bike seat. I was gross and sweaty and wanted a drink and then I wanted to barf. I wouldn’t normally have been like that after a bike ride two or three or five years ago (well, not a ten minute one).
I get like that after a shower. I get like that getting dressed in the morning. I might be mildly deconditioned, but it is because of something.
Controlled vocabulary: I sense that the term might mean more than simply out of shape in this particular context. It might not be clearly explained why (it might work out that the interpretation suggests a few reasons beyond the obvious), and it might be even more obscure if you’re not familiar with how these reports use the term in the larger sense. I am sure more details were given, but were not something Dr. J could act on (or felt like he wouldn’t be putting me through unnecessary stuff if he did). For all the phone tag that could go on, I’d be better off waiting for the doctor who knows the case better from the pulmonary angle and therefore knows what he might need to ask the guys who did the test if there are further questions. He is familiar with reading the report results — which I really do gather are kind of their own entity — but confessed that he’d be lost as hell interpreting on his own.
So I wait… knowing, as I did, that if it didn’t kill me last month it probably won’t this month, but hating the idea of sitting here. I wish I hadn’t called because — though I didn’t lose it on the phone with Dr. J — I completely melted down with poor Mr. Shoe. I know by rights there is more information on that test, and that… I mean, the hell with everything else, my diastolic blood pressure is way too high constantly and goes up during exercise, and my heart rate — while helped by the propranolol — still is a little too fast far too often. And I know the last spirometry reading was not what they were expecting. It isn’t that everything’s obviously okay, and it isn’t that mild deconditioning is the root cause of my issue and I know (now that I’ve had my screaming fit) that any reasonable person could see this.
It’s just that Dr. J couldn’t say, “Well, you’re not going to drop dead before Dr. W is back, and there’s stuff here to indicate maybe you have something going on but I have no idea what it all means.” I mean, he could have… I really would have preferred it. But it isn’t what they train doctors to do. I think it’s a lot more comforting at my stage to hear that something’s not right than it is to hear that I’m fine and out of shape. Because even though no one there has ever suggested any such thing to me, I still hear “stop malingering, you lazy ass.” I know this isn’t how it works with most people. Most people aren’t told they found lymphoma in a preliminary tumor workup and tell the doctor, “Oh, god, that’s a relief. There’s a plan for stuff like that.”
So all I did was unnecessarily freak myself and poor Mr. Shoe out. I also have nothing to tell the cardiologist (the local guy) that I see on Monday, because basically — what I was told I pretty much knew. And I know there is possibly a few paths they can look at to discover why this stuff happens — why am I only mildly out of shape? What the hell? Was I like all buff before? The cardiologist scheduled my follow up so that he could hear what they found and he could say what the cardiac stress showed. It might be he can explain the deconditioning. It be that that can explain any lung weirdness.
We’ll probably just look at each other and talk about electrode adhesiveness, though.