You Dropped the “L”

Finally had that wild ENT appointment today… Sure, maybe the place was calm while I was there, but obviously there had been some heavy partying going on. The lovely silvery lettering over the check in desk read “Department of Otolaryngo ogy.” That missing “L” might explain a lot, actually.

So I was sent here first because I am always walking into things and falling down and sometimes get motion sick. This visit was a sixth month follow up audiometry and brain evoked potential whatchamadoozy. I think. I gather I am slightly less able to hear than I was six months ago, but in the same pattern, so there’s no reason to believe there’s anything growing on my acoustic nerves. I go back in a year to do that again.

Also, the very nice pulmonologist thought that the ENT ought to look at my larynx being a source of not being able to breathe so great. So the ENT, who… um, yeah, forgive me… is kinda the type of cougar woman I’d like to be one day… I’m sure she’s wildly competent and I know I’ve got her ear more than some other people just because I’ve proven to be unexpectedly weird (hell, I thought my hearing rocked)… But I have to say, I don’t feel like I can say much to her. In fact, I feel like she’s rushed to the point that she makes these almost too knee jerk judgement calls and I don’t feel like I can say anything to her. I don’t feel like it’s worth wasting my breath, which I am indeed somewhat short of for some goddamn unknown reason.

I don’t think she doesn’t like me, I think she is probably like this with everybody. It may be she hates all humankind, and she’s a nostril probing creature from Alpha Centauri. It isn’t personal. But I am glad that I’m going to a speech pathologist to work this crap out instead.

So she had to check my larynx. This is sort of cool, and I could tell she delighted in this… but I also was not a problem that I’m sure some people can be. She had this laryngoscope endoscope light thingy on a big flexible tube. She shot compressed air uber-chloraseptic in my throat via my nostrils, and away we went.

I want to go on the record… I am sure some of my problem is muscle spasming and irritation in my chest and throat. I am more sure because I would gladly go through having a long, flexible tube shoved up my nose and down my throat to get that stuff sprayed in there again. I still had chest pressure. But it didn’t hurt and feel all… razor blades in my lungs-like. It lasted for the ride home. Then the crap wore off.

Anyway, nothing looked amiss on the vocal cords, which means they’re probably just stupid and not behaving right… why? About a million reasons, from neurological to gastroenterological (I guess they used to think this was purely mental, but it isn’t, unless you count the idea that it happens and then people freak out more. I tend to get bullshit about it, but it might provoke the same response, as it is stupid muscle reactions mostly).

I get to see if this is happening, of course. Some time. I want more of that pumped up chloraseptic. That is all.

Before she commented on my hearing or anything, however, I was asked how my pituitary tumor was. Um. I don’t know. Every one says not to worry about that either. I mean… No, but I get the impression that maybe the size it was is somewhere they start to feel concerned, and maybe I ought to get a neuro/neuroendocrine set of people following along. On the one hand, it isn’t something you just rip out, and probably won’t tell us anything useful. On the other hand, it isn’t like I want to wait for it to be a problem. I mean, my sweet GP is twitchy on the whole “if it is any bigger it should come out!” line and I’m thinking… it wasn’t there a year or two ago. It ought to qualify as bigger now than it was. I’d rather have to watch for any ensuing pituitary hilarity than take out the tumor, mess it up (it happens) and either still have to watch or know that I have to replace every last hormone ever courtesy of the whole thing going pear shaped.

This is also the dear Dr. J at Dana Farber’s take. I think, however, I do want to keep a better handle (and maybe get a clearer history) on how it has changed.

I thought it odd that it was the first thing the ENT, who doesn’t deal with this crap at all, hits me with. I don’t know.

But I am off to visit the fine folks at Dana Farber shortly. I had to have them double check the appointment. For some reason, the lab work, normally done an hour or an hour and half before appointments, is scheduled for like… five hours before. I am less than thrilled, but I am guessing it is to have something in to look at in a timely fashion. But jeez. Not enough time to really get in and out of Boston or anything and while Boston’s a lovely city… I’m sick to friggin’ death of the Longwood Medical Area.

Sorry, docs, it’s not that I don’t like you guys… I mean, I don’t like anybody. Hehheheheheheh.

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Sometimes, It Isn’t Chocolate

Chipmunk

See this little guy here? It’s a chipmunk that looks like he has been salivated all over… He wasn’t, it was wet in the leaves on Saturday morning.  Unusual picture in a couple regards, though. First, where I live in Massachusetts, we don’t see these. I mean, there might be a few out in the protected wildlife areas a few miles away, but not here. We see squirrels (grey) and lots of song birds and hawks and stray feral cats and skunks and the occasional possum (not many raccoons, but still, not unusual). One thing we don’t see… okay, two things we don’t see — red squirrels and chipmunks. Where my parents are, in northern New Hampshire, they’re all over. They’re skittish as hell too.

So seeing this guy in our yard was kind of different, and explaining how he got here was a little trickier than with the oriole we had visit this summer, which was also a bit out of the ordinary. Also notice this little guy has a stubby tail.

It looked all healed and stuff, enough, anyway, that I was pretty sure it was something he’d survive.

Mr. Shoe and I have this saying — I’ll let you work out the subtle implications — that sometimes, when you see something that looks chocolaty under a set of circumstances, sometimes it just isn’t chocolate.

I kept seeing this little guy popping around, twice on Saturday. He looked okay. I mean, kind of stupid, but given that any small rodent running out of leaf litter and spotting a person will pause, then sometimes run towards it until it realizes what a dumbass it is being, nothing seemed amiss (save for his missing tail).

So did he come in in the mouth of a cat? Dropped by a hawk? Touched by an angel? Damned if I know.

Sunday I saw him popping around briefly, from a distance.

Monday… I had to call Mr. Shoe, because I had to ask if we were duty bound to do what I would normally point and laugh at and say, “Dude, that person is from the city!”

We had to call Animal Control and Fish and Wildlife. About a chipmunk. That was potentially rabid.

First, the people answering the phone at Fish and Wildlife apparently didn’t know what a chipmunk was (the animal they were thinking about was, the best we can tell, a woodchuck.) The city’s Animal Control people did know, but said they’d only be alarmed if it were, say, a rabid woodchuck. Um… Well, up until Saturday I’ve seen as many woodchucks here as I had chipmunks. There are just so many things wrong with that picture. Is there a rabid woodchuck population that the Massachusetts government is keeping all hush hush about?

The upshot being that the state figures the chipmunk would not survive an attack with a rabid animal and manage to contract rabies. Okay. I mean, I get that, but this little bastard had a pulpy tail, was drooling, charging at squirrels and birds, would have happily let me pat him yesterday if I were someone with a deathwish, and spent about forty five minutes out in the open (on a light colored paving stone) while I walked by him, birds flew over, and predators roamed freely. Then the palsies started… best I can describe it is as if he were completely aggressively demented and then he had a little chippy embolism in his brain that left him mildly sluggish or weirdly contorting and then the clot cleared and he became completely aggressively demented again. It was pretty clear that whatever it was, it was neurological and it was all nearly done.

I felt bad, of course. I wanted to do something to put him out of his misery (and I figured maybe there was some reason why the wildlife service might be interested in knowing about potential rabies cases… though I suppose meningitis is a pretty decent suspect in this guy’s case). But if the act of having to call the Fish and Wildlife people over a maniacal chipmunk wasn’t humiliating enough… I realized that it was much smarter to just let him go on his own, because it is a really traumatic thing to botch dispatching a small animal, and I was honestly kind of terrified by this little bastard. If squirrels are skittish (which they aren’t so much, but I couldn’t get this close to one), chipmunks are by nature ten times more skittish. This one came after me, and sure as hell didn’t back down from my shadow approaching. This is behavior I’d expect from a too used to humans raccoon. And I wouldn’t push my luck there, either, incidentally.

So we don’t know if the poor little guy was rabid or had an infection or what. I’ve not seen him (nor his body) today, so I hope for his sake he’s gone to the great chipmunk chipping grounds.

I’ve got a throwing ax and some hedge trimmers ready when the zombie cats start showing up, though, I tell you.

 

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Plugging Away

Let’s put it this way: I try. And some days, I get further than others. It’s a funny thing I’ve noticed… Wind and cold weather make it hurt to breathe in (wind makes it impossible, cold hurts in the way that when I push too hard it hurts). Warmer than say… 75 degree weather, especially if it is humid (but c’mon, it is the heat and the humidity. Both.) I have a particularly difficult time moving at all… but my chest muscles are definitely affected. The real pisser is if it is hot and humid out and the air conditioner is on, I just get both of these feelings constantly. That sucks.

So the last three days have been 64 degrees or so. I like this. I mean, it isn’t really like I can do much more or that I feel better, but I can do a little more without feeling worse than I would on another day where I did less… I hate that it seems we always have to settle, but for now I’m totally settling. I mean, what can you do?

Anyway, it meant I got out with Mr. Shoe and Penny and finally got her a new harness. I had ordered one online and… pugs are oddly shaped. I returned the one that didn’t fit and figured I’d be better off getting a credit to the online doggy-supply store but purchasing a harness locally.

The dude at Petsmart agreed that Penny was deceptively sized. Her head… and her neck… are a lot larger than they seem. Actually, her head and neck are one in the same, I think, but we managed to find a good harness that had both shrinking and expanding room (I swear Penny also retains water.)

I (oddly enough) don’t have photos of Penny in the harness. I’ll have to take some. It’s pink and black, which isn’t quite as cool as the pink camo one I had gotten previously, but when she’s outside in natural light with it on… It looks sort of dominatrix-y, which is pretty funny.

I used the credit at the online doggy boutique (okay, I’m going to link to it… it’s called Funny Fur) to get a couple of things for Penny that were less size dependent (although I sense she may expand again now…)  So you know: No child of mine, even if she relieves herself in public and has no qualms about sniffing other’s posteriors, will ever wear something that says “Juicy” on it.

What’s actually more frightening is I laugh at some of the stuff (I mean, c’mon! If I need a separate closet for dog clothing…) but some of it… I have a history of owning short little dogs with large buggy eyes. When we walk in high grass (which happens a lot… I mean, it rains, my dogs are short, and lawns can’t be mowed…) or when it’s windy, I have most definitely worried about their eyes. I worry about Penny’s quite a bit, as she has questionable vision (she can see in certain light really well, and you’d think just makes it up as she goes along in other lighting conditions). Penny tends to walk into things, pointy things… pointy things that are at eye level. Sticks. Branches. So I saw these doggy goggles and thought first, “Oh my god, how incredibly stup–” and remember all those times with Monster and Norman and Penny that I wished I had eye protection for them. I also know that chances are good Penny would be more inclined to walk into stuff with them on. Norman would have been terrified beyond belief (but probably needed them most) and Monster would have told me what an asshole I was for even considering it.

So I returned the harness to these folks and instead got an odd deflated squirrel squeaky toy (it’s plush, but not stuffed, and so Penny has an easier time running around and flipping it.) I also got… When Mr. Shoe makes bread, Penny loves it. We don’t give it to her, but for some reason as soon as the yeast is mixed into the bread and starts activating, she’s like a crazy woman. I thought she’d be just over the damn moon if we put something in the oven, and took it out, and it was expressly for her. So I got her some carob cupcake mix. It’s dog safe, but Mr. Shoe ate some of the crumbs (yeah, well) and it was pretty good. (I believe it, but I felt gross as it was and I’m not a fan of any carob-y chocolately cakie product. Chocolate (or carob) must be served in a suitable form, and cake, ice cream and cookies are not suitable, unless the chocolatey stuff is a chip form factor.)

Let’s just say I think we created a monster.

Penny awaits today's cupcake

Penny awaits today's cupcake

Penny awaits today's cupcake


Penny awaits today's cupcake

The good news is that I can sneak out (now that it is cooler) and distract her with the cupcake and take some photos outside,

Chickadee

I'd be in trouble if I were an acorn
I'd be in trouble if I were an acorn
I'd be in trouble if I were an acorn

Hey, we do what we can.

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I At Least Want a Nasal Speculum Out of the Deal

I mentioned that it is actually kind of weird to have a doctor stand out as being exceptional because they call and follow up like they say they will. It is. I mean, why the hell should you get props for doing your job? I mean, it’s even okay if things are basically all right and you have a nurse or an assistant call… or as my awesome GP’s yearly physical form letter said, “Dear (insert name), Your pap results show no abnormalities. Please call if you have questions. (hard return, hard return, hard return, new graph)Also, your chlamydia and gonorrhea screenings were negative.”

I liked the “horrible STD” paragraph stuck on the end as almost an afterthought. Would I be allowed to ask questions on those if I wanted? I’d ask if it was just a “pick a paragraph and paste” form letter, and if so, is there a “you have an STD and probably had no clue and we’re just letting you know that you do. Bye!” option?

Anyway, the very nice pulmonologist called back as he said he would and was happy enough to be on speaker so Mr. Shoe could ask questions.

Short version: I am okay to exercise. I mean, yes, there was indeed a question as to whether it would be making things worse. It is not. I mean, the pisser is that it isn’t helping. The really nice thing was he knew that. I mean, he suggested I start up, slowly, very slowly, because it is a good thing, but the deconditioning was very mild (and that can happen in mere days… and since I was told I should really not push it in June and then we didn’t get any real solid testing done and back until… last week… Yeah. Of course.) The deconditioning was so mild and kind of not the problem that while I was cleared to exercise, I was not put on a program at all.

That’s just as well, as we know now neither deconditioning nor any overtly horrible heart or lung malfunction is going on. That’s not to say that there’s not a risk given something causing stupid vascular reactions and intermittent oxygen desaturation coupled with the tachycardia and high blood pressure. But nothing nasty is happening to them as we speak that would mean massive changes now.

So what the hell is going on? I mean… something was screwy on the last PFT after exercise. It wasn’t asthma. His thought is an upper airway/muscular thing.  I should speak with an ENT and a speech pathologist (no lie, folks, I talk weird and I drool and then I can’t breathe.)  Since I was seeing the ENT at the end of the month anyway for this audiometry test, perhaps we can figure out if and why my vocal cords or whatever are misbehaving. I guess any number of things can cause that. He said that was an option, unless I was just damn sick of tests and maybe I could give reconditioning a little longer.

I am sick of them. But considering when this started I was walking four miles a day (and had been for about six months) and I was still doing so when it became such a problem that I mentioned it to some physicians… and was told I was probably out of shape… I’m not holding out hope that anything I could do would ever be considered enough even if I could do it… I could see a throat issue being a larger issue in my chest (and hey, my ears). I don’t know. I mean, I also have liquid fly out my nose (not while I laugh, just take a sip and out it shoots) more than I should. Maybe not as much as before my thymus came out, but still. I guess that is a sign of a muscular issue or obstruction often enough — still didn’t keep the neuromuscular doctor I’d seen at the time from looking at me like I had two heads and say that maybe I should just concentrate when I drink.

Nope, shoots out my nose, the second sip… I am trying not to concentrate on my glass at all. Trust me.

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2010 Called

For the record, I am composing this sucker on my phone. So if you see silly typos, it has a lot to do with my needing to trim my thumbnails.

This time (or thereabouts) last year I was walking into Dana Farber for a second or third visit. It was an interesting time. First, I met my cousin and her husband in the waiting room. Her husband was getting a second opinion on his lymphoma diagnosis (he is doing quite well. You go, man.) Incidently, it was also about this time my other cousin (this cousin’s twin sister) oldest son (in his mid twenties) was diagnosed with acute lymphocytic leukemia. He has had a rough ride (and was in California at the time… so naturally was treated there) but is also doing quite well considering that… well, that’s a really, really shitty, variable, shitty, crappy, not to mention shitty thing to deal with. However, one year and a lot of nasty medical procedures later, he is coming home to visit. That’s a really happy thing.

Anyway, last year at this time, walking into Dana Farber I said to Mr. Shoe, “I am betting one of those tests they did was weird and in some completely assbackwards way.” It is just a feeling.

That was when we found my not lymphoma, but why the hell is there histiocytosis looking so surly in your hip muscle tumor.

Okay, first, I have that same feeling that I am going to hear something that somewhat originates out of left field today, but hopefully not that far out in left field.

Second, I know it is sad to appreciate someone in the simple act of doing their job, but the pulmonologist called yesterday – first day back from vacation – to say he had seen the full test report from my cardiopulmonary testing. He left a message (I was out with Penny, because somehow I feel I need to report to you guys). He said, nutshell, that everything was okay enough that I didn’t need to return his call urgently or page him. He did want me to ring in the next 24 hours with a time (within this week) and number so that he could discuss the results.

I called back and gave him a time when Mr. Shoe is here, so he can ask what he wants and not ask why I didn’t ask about something that I can’t imagine is relevant. (Poor Mr. Shoe. I am picking on him.) Also, I have a hard time speaking on the phone. Physically. And in some odd way, I think that might be part of what I am told today.

I can’t imagine what. I think the usual suspects are… while symptomatic… high blood pressure, tachycardia that propranolol sort of helps… not necessarily what they seem. I think it will effect my heart and lungs and we should fricking treat it soon, so it doesn’t damage them, even if we don’t know what is causing the shortness of breath and crap. I mean, they can do that. But for some reason, I just think I am going to hear that the test points to a muscle disorder… or something weird like my kidneys are backing up. Just… maybe explanatory but just plain weird.

We’ll see this evening. At this point… just try something. I could give a rat’s ass what it is except for the fact that knowing what it is helps get something done. 

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Penny’s a Nine. In SO Many Ways

Penny, as you may well know, is an exceptional girl.
Penny in a babushka

For instance, she can put the evil eye on you just for dressing her up silly and taking her picture, then posting it up for everyone to see. I mean, she’ll do it to you, even though I’m the one that did her that indignity. I’m mama, and I’m therefore awesome. I wish I could live up to how she sees me.

Penny has other quirks. I mean, she’s wall eyed. She’s got a small chin (not a large tongue… and actually, there is a difference. It’s much better to have a small chin than a large tongue healthwise. I’m not kidding.) She has two trick knees. She has had a bit of the muscle taken out of her front leg, courtesy of a mast cell growth. She had low thyroid. Now, after her first test, she has a high thyroid level.

Coincidently, her thyroid level is nine. Penny also has nine little pug titties. So anyway, I am thankful she thinks mama can do no wrong because I imagine that a thyroid level of less than one to a hair more than nine in a three week time frame might make her a little crazed. Um. This will make some people laugh: she’s been inordinately clingy. I mean… Penny. She is clingy. But I mean, “Mama, I’m climbing in the shower with you because I miss you” level of cling.

So we’re cutting her dose in half. At least she responds to the stuff. Monster obviously did outwardly, but his levels almost never budged above… jeez, he was really horribly low, and they never got him to the level of almost near normal low. But it was helping, and he was very old and on phenobarbital for his seizures, and we sure as hell weren’t going to trade his liver for a good thyroid score if it was working for him.

It is working for Penny, anyway, too. I bet once it is in a good range it’ll be a lot better. I knew she didn’t seem comfortable. More energy, but constantly starved (not just telling us so) and she’d crash out hard and be really, really clingy.

So the earthquake… Yeah. I did not feel it. Here’s the kicker: On two occasions in the past ten years, I’ve asked Mr. Shoe if he felt a shaking at one time or another. A good shaking. Like, was there an earthquake, Mr. Shoe, did you hear? Each time… nope. No seismic activity.

Yesterday, about ten minutes to two, I take Penny out. I feed the fish. We’re outside, we’re walking and peeing and stuff (I wasn’t peeing.) I come back in. Mr. Shoe calls at about five past and asks if I knew what happened, did I feel that? No. He said that everyone in his meeting thought they were falling asleep and dreaming the table and mugs and pens and blinds on the windows were jumping around (and they all admitted to feeling like they were drifting off… must’ve been a productive meeting with really great ideas being flung around). He said it felt a little like vertigo, being on the sixth floor and all.

And I realized… Ah, shit. That’s it. I didn’t feel it because my feet always expect the ground to be somewhere it isn’t.

So Mr. Shoe’s building was evacuated, because it is… probably needing to be condemned anyway (oooo. I did not say that!) It was cleared a little later because it basically is in the same kind of worn down and old condition it was prior to this event.

A portal to hell opened in our koi pond though, and baby koi keep streaming through.

We have seven large koi. We’ve had one for many years, two for a couple of years, and the other four we got last year. Each year we get baby koi, but maybe one survives, maybe two, maybe none. (Winters are not always kind to our pond. Actually, late spring frosts are not kind, and mid winter thaws are often worse). This year… It is frightening. Every time we go out, there are more baby koi. At least fifteen babies. At least fifteen babies the size of my ring finger.

And they hunger. The adults seriously jump at birds.

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Controlled Vocabulary

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.

 

 

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Well, Yay

Penny has some news.

Pink Peg Leg Pug

Not only is the cast off (the bandana was off real quick), she is officially rid of a tumor that was essentially benign, normal looking mast cells. Nothing looked suspicious or nasty (though I think the “aggressive” term stands, it just means “watch it” when the tumor is benign.) That’s good, because I need my baby right here.

I still haven’t heard much in the cardiopulmonary exercise test area, but I gather now that if your test isn’t nailed down in 48 hours, it generally means at least a week to read.  I just am punchy due to feeling crappy and being sick of it, and I suspect more tests are going to be needed and daaaaaaamn I don’t want to have a three to five week wait between scheduling each individual one.  Sometimes it can’t be helped, fine. I know. I don’t want to bump someone getting cleared for a transplant out of line, I’m not a total ass. But this isn’t getting better or relenting at all, and… I don’t want to make things worse because someone who supplies latex gloves somewhere is on vacation. I’m not a total ass, but maybe I’m kind of a bitch.

Pfffbbbt. I need the distraction. Besides, my best girl is a bitch, for real. A pretty one, even in a stumpy pink leg bandage.

 

 

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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.

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I Stand By My Previous Statement…

Because the cardiologist was pretty confident breathing difficulties would mess up my cardiac stress test, and that would yield less than reliable output, I had to do that injectable crap. Now, it was short lived, but massively unpleasant.

The cardiopulmonary test I had yesterday required that actual exercise be involved. I stand by the statement that I much prefer the exercise to the nasty injection… even though the exercise involved a radial arterial puncture (which… well, we got one. The second, post exercise one… they couldn’t get my artery to not roll away).  One thing is for damn certain, they make the bike seats for people who are a much different shape or size, or even possibly a different species than I (ergocycle, my ass! No really… I can’t feel my ass but for the huge, gnawing pain in my spine).

Here’s what I do know: My oxygen behaved. Okay. And evidently there’s no sign of any shunting in my heart. I also was told I have amazing lungs prior to exercise, like… the lungs of a superhuman (actual words spoken by medical professional). I was put on the bike, taken off the bike (was able to continue until the doctors told me it was now time to stop, as I hit the target heart rate — and then some — and they had enough data) and told again first that my lungs before exercise are superhuman. Afterwards, though…

I said, “Am I just average after?”

I go from superhuman to… um… not average. Now, I am not sure what the hell that means, and I wasn’t going to ask. Did it mean, since I had pretty damn amazing lungs that they dropped to a point that was a more radical reaction than they would expect given how good they seemed beforehand… but isn’t exactly a bad outcome? Or did I go from superhuman levels to that of a nearly dead lungfish? I know there was some consternation about one set of post exercise breathing tests, along the lines of “did we do this right?” I gather they did, though, because the next tests were within the percentage value of what they’d consider viable information.

So the upshot I walked away with was that I am not gushing blood where I shouldn’t be, and that my lungs and heart are both working basically as they should, or at least are still being brave in the attempt, but something is tweaking them off.

Since death wasn’t imminent, I was ignored as seriously thirty thousand doctors (okay, more like five, but whatever) huddled around the machine. If it takes that many doctors to print the results (which looked to be a good 30 or so pages of data and charts and bull), I hate to think what it must be like to go through it all. I was told the calculations will be done, matched to EKG readouts and blood gas results and by Thursday they should be able to at least suggest wherein the problem lies. My  guess is outside my lungs and heart, which means either blood, or muscle… Which isn’t overly surprising, and any of those things will have its own unique pissy factors.

My thymus has to be a clue, but one that muddles things. Is it a neurological/immune thing? It isn’t myasthenia gravis, we know that, and at the very least, this wouldn’t be worsening after it was removed. It might not get better, but it wouldn’t be doing this. Is it a weird insidious malignancy? An anemia or blood problem? I mean, all these things are associated with thymic tumor growth action.

Is it none of that directly? A lot of weird, genetic or combination genetic/acquired neuroendocrine or lipid storage/connective tissue stuff tends to start spewing out odd systemic, hard to explain symptoms and cause tumor growth.

I don’t know, but we can do something about it soon. Really. I mean, no, really. We can.

Also, my diastolic blood pressure was a lovely 105 throughout the test (it was 94 when I walked in). I mean… that kinda makes me wonder. The systolic wasn’t nearly so bad. High, yes. But that one is supposed to change during exercise, and go upwards.

I suspect they saw something that seemed a little off, but obviously what that is is going to take some pinning down. I sort of knew that, but I don’t know how I can relay the idea that three to five weeks between tests with no way to relieve or help the situation or otherwise keep things from deteriorating further is completely unfuckingacceptable (not an f bomb if you sandwich it in a word.)

If they could have turned the wattage down on the bike a little, I would have tried to keep on. I miss doing that. I miss moving. The bike seat though… yeah, I can totally do without that. I know why I like recumbent bikes with sort of normal padded chair like seats… I feel like the bruise on my spine has to be a lot more colorful than the one on my wrist where they drew the arterial blood…

 

Posted in Getting to the Point, Langerhans Cell Histiocytosis, Living with, Not Otherwise Specified, The Bad, The Good, The Ugly | Leave a comment