Demands Not Met, Not For Lack of Trying

I have an angry pug beside me. I am using the ungodly huge lapdesk made from… concrete and melamine, I think… possibly with some rebar thrown in as well… and thanks to the size of it and our couch, Penny can not climb right on my lap, or even get herself firmly implanted on my elbow, so she’s whacking the side of the desk with her paw. Angrily. Think of Judge Judy with a big gavel and some idiot with a small claims suit getting all uppity at her.

And Judge Penny just gave up. She’s now sulking beside my knee.

People ask what happens at vestibular therapy. Right now it’s still a lot of figuring out what makes me fall over most. If you’ll recall, while the vestibular tests showed left vestibular weakness, most of my complaints seemed based in the central nervous system or right sided — which confused the ENT folkses. Yeah, well, they sent the PT lady my reports, which stated left sided vestibular weakness… and maybe it is, who the hell knows how I’ve compensated or what the hell is going on… but the PT lady is basically seeing what I’ve been telling them, and it doesn’t appear to be necessarily what they saw on the tests.

But again, I think that compensating or overcompensating or whatever happens and no one notices (not even me) so that by the time any problems become apparent, it’s all so tangled sorting it out may not be possible. It might not ever have been, especially if there’s more than one reason and we’re all looking for one inclusive answer.

I think there is one reason, but it’s not a real technical one. Something broke along the way, somewhere. And then it rolls downhill.

Anyway, what I have been doing is half tandem standing with eyes open and closed. It’s sort of like the heel to toe test they give you for a DUI stop (or at the neurologist’s) but you don’t walk. You stand, hopefully. If you’re me, you don’t always. And so I have to do a half tandem, which isn’t quite heel to toe.  I’m better with my eyes open, and I am not good with them closed.  I guess I rely too much on my vision (which might be sending bad signals to my vestibular system) and so when I shut them, I tend to not necessarily keep track so well of where limbs and things are. I guess my depth perception totally sucks, hence stair difficulty.

I have a feeling there’s only going to be so much we can do there. I guess in my case the big thing is to grasp what the hell is going on behind the scenes so that at least I can work around it.

In any event, I keep being told that it’s a good thing to push myself and do stuff even if it means, as Dr. J said, Mr. Shoe has to learn how to do a fireman’s carry to get me home. As if I didn’t already know that… I mean, isn’t that why I go through the whole medical professional deal anyway? I have stuff I have to do. And maybe I’ll feel better.

Do I? Yes, shitloads! And by shitloads I mean not at all… Heh. No, I mean, I don’t know why I am suddenly all bitch on fire at the moment. I do feel better when I do stuff in one way because I made the effort. But I’ll make an effort to prove a point even if it kills me, and I’m pretty sure that’s not the spirit of the suggestion.

Case in point, yesterday was lovely here and Mr. Shoe had the day off because Massachusetts makes up reasons left and right to do these things. We packed up the camera and Penny and went to the park for a half hour. It was nice, and I am glad we did it. And I’m sorry we couldn’t do more than a half hour, but I sadly couldn’t get a full breath in and… actually, that was it mostly. Because I couldn’t get the air in right, I was also blue in a few odd places and felt at least a couple of extremities that were being non-cooperative. My fingers I tend not to worry about, since I can see them.  My toes have a tendency (especially on my left foot) to jab into each other and get sliced up easily. I don’t always feel it, but I’ve ruined a few pairs of socks and already have a decent slice on one toe so the idea of possibly making it worse via bad circulation was not appealing.

Do I feel physically worse long term for doing this stuff? No, if I am smart about it. Sometimes I am. Do I feel better for it? No, but for the fact that I know it’s probably still a good idea even if it doesn’t help much. Do I feel mentally better about it? It’s fun to get out, and that’s good. I can’t do it nearly as much as anyone (including myself) wishes or thinks I should and that is frustrating as hell — and that’s not good. Of course, the alternative is not to try, and that’s not really an alternative. That’s just stupid.

So you make your peace and move on, I suppose.

Now the lapdesk legs have been disengaged and my knee jutted out at an impossible angle so that her royal loveliness can rest her chin on it.

I love this little dog.
MAMA!

Also, I was careful to stay below this rocky outcrop.
Cliff

Anyway, chugging ever onwards. I have no idea how long they’ll try the vestibular rehab. I know that a month in they decide whether weekly or every other is fine… I might go to every other since I have been a good doobee about the exercises and the idea that I’m going to get leaps and bounds better is… not widely supported. Both the PT chick and I think there can be some progress though.

I am back to see Dr. J in early June for the full on pulmonary function test. Six minute walks, flights of stairs, and oxygen saturation measurement along with the regular old PFT stuff. My PFTs have always been good, but last year was not as good as the year before. Neither did a formal exertion/oxygen read. I hate the whole waiting for the shoe to drop (god, that’s ominous!) thing… But I know that’s about it right now.

Now I have to dry my knee off. Someone seems to have drooled all over it. Not me. At least, not this time.

Posted in Langerhans Cell Histiocytosis, Living with, Photos, Hobbies and Worthwhile Stuff, The Bad, The Good | Leave a comment

Side Notes

I just took a photo of the most amusing slash disturbing (and it makes sense I wrote out slash, trust me) thing I’ve ever seen turn up on our front lawn. It’s somewhat heartening as an open source geek woman to see such a thing… and the fact that it is lying on our lawn is… I don’t know… ominous? A sad statement? A message for me? A message for Mattel?

What’s even better? I can’t post it at all at the moment. While we have zippy FIOS here in the house, it does slow the router a bit too much for me to upload photos to flickr while Mr. Shoe is doing a podcast with his little man friends (his friends are little, really. They play with little men. Oh, see, now… That just sounds dirty.)

So when it is up, it’ll be on my flickr stream. Oh hell. I am uploading the single image. I… I can’t see the point in posting this without it. What a tease. I’ll save the other three hundred bird photos for after he’s off the podcast.
How do I NOT Creative Commons License this?

I had to share. You can see other images that aren’t completely weird (only partially so) on my flickr stream.

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Ear Exercise

A few thingies… I ended up having ye olde annual mammogram (finally) last week. I know for certain the tech has a horrible poker face, but since I also know I have a history of lumpy yet not suspicious boobs, I’m not 100% sure I’ll be called in for a second look (but if I am, I’ll report to the hospital, second floor radiology, and they’ll tell me by the time I walk out what to do next… Y’know. If things looked different.) Honestly, I don’t know. I do know that the mammogram place is usually slow as hell reading stuff, so the fact that it was almost a week now means not a whole lot.

Second thing is I’m kind of stuck. I mean, now we’re in the make this as painless as possible mode until the next thing comes. And I know this will be simultaneously too soon and not soon enough. So my stimulants are being increased slightly, and hopefully that’ll help a little.

I also went to my vestibular rehab evaluation. It went overtime, and I suck. Heh. My exercise this week is to not fall over. (Not exactly, but not far off… I was thrilled that the standing with my feet together and eyes closed exercise was too easy, but not so much that the standing heel to toe with my eyes closed exercise wasn’t. So I’ve been modified in between.) It seems I have the tendency to be falling towards the right. Have I seen a neurologist?

Yeah. Yes, yes, I have.

I’ve mentioned my really swelly left leg to a few doctors who either say, “Look at that!” or “I don’t see anything” or just make caveman noises. Both legs swell, my left is just… evil. Dr. J asked if I could wear the same size shoe on it… Sometimes. That day I saw him, yes. I guess it also has to do with my socks cut off the fluid from hitting my foot so it sticks in my calf… also not good. And the PT lady asked if I had told doctors, I said yes, and she told me to tell them again, please. And please keep telling them until they can give us an insight into it. I might be helped by compression socks if I am just a slightly asymmetrical sweller. If I’m not, then she doesn’t want compression socks doing… whatever it is they might do to my left swelly leg.

She did think I could be somewhat helped with the physical therapy, but there seemed to be peripheral vestibular damage and probably some central issues that may or may not be directly relational, but probably are screwing things up. It’s worth a shot.

At any rate, left heel to right toe, I’ve gotten a bit more dependable standing with my eyes closed. Right heel to left toe… um. I modified as instructed, but I still can’t quite get to the ten second mark even if my left toe is merely an inch or two behind my right toe. I just hope it works in some way… even if we just unravel where our points of damage might lie.

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There Has to Be a Super Power Here Somewhere….

You know, the X-Men were all tortured souls and that sucks and all, but at least they could sprout blades out from their knuckles or control the weather… Notice they couldn’t get Professor Xavier out of the wheelchair? (Then again, they couldn’t do a whole hell of a lot about the crappy aspects of those mutant powers.)

When growing lumpy bits and getting car sick and peeing and sweating all night long to the point that if I don’t get up and have a glass of water after four or so hours means I’ll black out at hour five becomes a way to save the world, call me. Until then…

So here’s the thing. Saw the ever patient Dr. J who is going to ring for my past chest CTs and, more importantly (well, actually, probably not over the long term, but I don’t think it was ever evaluated correctly) my past brain MRIs that are in hard copy form and compare the latest. I think I lied when I said I wasn’t told how large the pituitary growth was. I think Crazy Eddie may have said 3 mm or something. Maybe not. I know this time it is a 4.5 x 4.5 mm growth, which would be bigger, but… Honestly, these things are not necessarily the freak out fests that you’d think in many cases. I think 6 mm is where they freak. I think smaller ones tend to be symptomatic and dangerous (and not found in the area mine is located, so probably that is irrelevant information, even if it’s generally correct) and growth at a specific rate and time of life are what makes them go hmm. I know this is not congenital. It is new as of 2009, I guess, at least. It may be a hold on and wait thing though.

Why? Because when isn’t it? I mean, here’s the shitty part: There is nothing they can do right now. And it’s true. It’s not a blow off, and at least it isn’t like we’re going into the next phase with me being written off as a freak (okay, a freak of nature, but I’m at least documented as freakish).

Dr. J suggested that maybe my sweet GP or a rheumatologist might have new ideas… And I said, “Have you… I have had so many of the normal and unusual rheumatological works up done that given my age and gender, I should have at least had one false positive. I haven’t. I have had so many Lyme tests, I’m sure that Harvard Pilgrim must think I live with a herd of white tailed deer. These tests aren’t bad, but aren’t always right — but my understanding is they generally do false positives. I can’t even flunk an antinuclear antibody panel that the lab has completely botched.”

I also never, ever have any signs of inflammation. Okay, sometimes my platelets are high. A little. And that’s about it. At the very least, I don’t think anyone has a clue what will work, because if he’s reluctant to try chemo (and I think this is probably a very good thing) based on that crap, no rheumatologist will try any other immunomodulator — I guess because they come down to being the same damn things.

Of course I’m guessing that if I had malignant cells (clearly malignant, not the atypical/not quite malignant ones that they saw in the biopsy in evidently pretty good numbers) previously, they wouldn’t hesitate. Or at least maybe there could be a justification… but since chemo wipes out all cells, the fact that I have atypical ones that gather where they shouldn’t doesn’t mean it is killing bad cells with good cells, it’s just going to knock me down and probably leave me in the same spot. At the moment.

He did mention the possibility of biopsying the pituitary at a certain size. Yeah. No. Nobody goes in there unless the damn thing is cutting off circulation. It’s a rule of mine. And the lungs are likely not to show anything (of course, neither is the pituitary. If it comes to that, I’m going to argue we do some educated guessing and nuke the bastard. Why is that better than a knife? Hell, I don’t know. I just don’t want the damn headache afterwards. Is that stupid? Seriously, I don’t want the headache.) I know it’s not that large, though. I do suspect it is growing.

I also told him I kind of was getting to the point I didn’t care. And I realize that for someone who writes, I should know to be more careful about what I say, because what he thought I said wasn’t at all what I meant. So then came the lovely question (which at least was a valid question given how I said it, when usually it’s just asked because the doctor wants to pass me off) as to whether I felt suicidal.

And I hope Dr. J isn’t offended by what I think I said… I either yelled “Jesus Christ, no!” or “Motherf—, is that what– No!” And then I hope he wasn’t offended (I know he wasn’t, although I told my sweet GP this once I knew it made her weepy) that I clarified, “I mean I won’t come seeking medical help at this point. Nobody can do anything, and if I only have five minutes a day that I feel decent, I don’t want to spend it here, doing this, getting nowhere. I want to do something that is at least worthwhile.”

So it’s odd, too. I lost it last year in the first oncologist’s office. He was nice enough and all, but hearing that the thymus thing was “probably incidental” (fortunately, the pathologist informed him it probably wasn’t, and what do you mean no one knows what’s going on?) sent me off the edge. And boy, do you feel like a jackass leaving a cancer center in tears because you don’t have cancer.

I haven’t lost it in an appointment since — Mr. Shoe, another story entirely. He is doing the relief work in the water department this year I think.  I just can’t. It’s not that I don’t feel it. It’s just not worth it. It’s not worth the snot and the sinus headache and the fact that… it’s energy I don’t have. I feel it, trust me. Best that happens is a wobbling voice. I don’t have the energy to push the tears up. And they don’t do much except leave me with a wad of kleenex that I can’t find an appropriate place to chuck out come the end of the appointment.

For some reason, crying made me feel like a weak hysterical woman in an appointment. Not crying makes me feel like Hannibal Lechter. I can not win.

So here’s the plan forward. I see Dr. J in two months, I guess cause… he feels pity. Heh. And I’m getting a pulmonary function test, but a decent one. One where I walk, run some steps, and they check my blood oxygen and shit too. Because… that’s a problem. Dr. J urged I exercise more, it might help…

And I gave him the look. Yes, I will, because the gauntlet is now thrown, sir. If this is what it takes, it is what it takes, and I hope you’re right and fixes things, again, and I do enjoy it anyway, but I fear that it’s not going to help much.

So then came the amendment, “Okay, well, it can’t really hurt.” This is true.

I walked on the treadmill, learning that really, I am just short of breath. That’s all. I was more short of breath pulling on my socks after my shower. I get more short of breath when I laugh. I am at least not that out of shape. And also, I push myself too hard. I think it might be mildly obvious I have this tendency when I consider advice a “thrown gauntlet.”

I told Dr. J, and I believe it… I am the weakest link here in getting things taken care of. And the pisser is, this is just going to be whack a mole and watching. And I will feel shitty. A lot. And depending on moles being whacked, I might feel shittier, and only get back to the present state of shitty. But if we find as things bust that some things help and I qualify for the stuff that might make life easier — part of the reason for the exercise portion of the pulmonary testing is to see if supplemental oxygen might make my life easier — maybe it won’t suck as much in places, and I’m taking what I can get.

So I see him in two months, though he said that he will have them go over the MRIs especially. I told him I was slightly paranoid as it was missed twice, and even the first MRI the neurologist who spotted it wasn’t so sure what he was seeing. Not that it matters but to document how fast things are changing, if they are changing… Because I really don’t want them digging in there. Headaches, you know. Nosebleeds, too, I bet. And still probably no really explanatory anything. Because no one knows why this crap happens.

Like hiccups. No one knows why those happen either.

In other news, my blood tests… Lyme was negative (shocking, as I write this lying in the reeds beside my white tail deer family), thyroid was actually a little low, but I guess not a concern (again, why do they order blood tests? I know that one is a fluctuator depending on time of day, though. Don’t know if it is considered with result reports) and B12/folate were fine. Know what else was fine? Vitamin frickin D. Fine. Trust me, I have not been taking the horse supplements. I have not been taking any supplements. I am as pasty and white as ever. And I still don’t drink milk. So… Somebody’s lab was broken. (This test, and the Lyme, were sent to two labs I think… I guess that’s the rule most of the time with Lyme, and some labs have been erroneously reporting Vitamin D deficiencies — big ones — for years.)

Who’d have thunk it? Me. I’d have thunk it. And remember, if the world can be saved by car sickness and night sweats, send the signal.

 

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Ultraquick

First, this is a quickie, mainly because… look, I don’t wanna. I have been playing with the camera when I can, though.

I see Dr. J this week to discuss what I haven’t told you all here. Mainly because… I have no clue what to say. My MRI of my vestibular system shows no reason why I am off, but the radiologist did notice and measure my pituitary growth (named Waldo) and I guess that my lovely stalk that holds the bastard Waldo in there is also involved (not unusual, but Crazy Eddie, the neuro who spotted it to start with — who incidentally is no crazier than anyone else on this frickin’ orb — didn’t think the stalk was involved.) As you recall, the first radiologists missed it entirely.

So we have a measurement, but damned if I know if it is any larger or anything, since really, no radiologist technically measured it. It wasn’t what they were looking for in particular, nor is it in the area they concentrated most on, and they spotted it, though, so it could be that the other radiologist sucked, this one is really awesome, or it is noticeable. This radiologist did compare to past MRIs at the hospital, and it was not there in 2005 (an electronic medical records system where information was easily transmitted across hospital networks would really rock. Hooray universal file formats. Right.)

So since my MRI in 2010 did have something on it, but it wasn’t done in town, the differences will be a little slower to pinpoint, if there are any. They have the disks in town, but not in the system. Dammit.

 
Crocus

I do not have this kind of energy:
Robin, Pouncing

Robin

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Hold Your Breath! Okay, Now Breathe!

I was going to start with the (not quite so obvious) explanation of my title there, but then I realized I never actually told the greater population how we got there.

Okay, here we go…

Last week, I saw the ENT again to hear about my temporal bone CT and vestibular testing results. Doctors are funny. I know of many really, really great doctors who do not seem to have the time of day for a patient if they don’t immediately see something wrong in their area of expertise. Thanks to Dr. J’s awesome summary (well, not awesome in subject matter, but nicely put forth) I got a good hearing (hah!) from the ENT. I know she wasn’t expecting much – possibly something on the CT.

So I go in, and she’s going through… I’ve got right sided arthritis like stuff in my temporal mandibular joint. Could explain some of the pain or swelling. I have enlarged salivary glands (I know not how many or anything) on that side, but when haphazardly compared with past MRIs, nothing seemed radically different. They are noticeably larger, just not… suspiciously so, I guess. Bone, including the ones in the ear, all look just dandy. Okay, then.

Then she notices, hey, more paperwork. Did I order an ENG and audio testing? Yes, yes you did.

Okay, she says, the CT looks, you know, pretty okay (her words exactly) and your vestibular testing looks…

Ah, that pause. The one that makes your stomach lurch a little, because you have no idea what the hell she’s going to pull out of the results that you were already told were a little off.

Evidently, maybe they were slightly more than a little off.

…my vestibular testing was interesting. Unusual. Not logical with what was on the CT, but certainly consistent within itself.

Left side: I have some kind of nerve damage to the vestibular system (as well as some minor hearing impairment at higher decibels.) Because the vestibular weirdness and hearing weirdness are co-existing, same side, behaving the way they do, there are any number of causes.

Sometimes… Most of the time… They don’t really know. She says to go get an MRI, however, of my inner auditory canal (I found out they shoved a better look at my eye sockets in too). She says (and I knew this) that while it is really very, very, exceedingly rare, sometimes tumors grow on nerve sheaths and blah blah blah. Very rare. One percent chance.

And I’m like, you had to say it, huh? The last four times I was told that something was so out there the world’s most reckless gambler wouldn’t take that risk… Guess how those turned out? I truthfully have no idea… I imagine that if anything is seen, it’ll be where not at all where they would have expected it or the type of lesion they’d think it’d be. And truth is, it would be weird.

I went for the MRI yesterday (yes, Sunday). I almost got a chest MRI. I was told as the port was put in for the contrast that I was going to have to hold my breath here and there. I thought it was weird, but, hey, inner ear, pressure… I figured maybe it was to help visualize something better. Nope. Mixed me up with someone else. Good news was I needed the port anyway, and they caught that before I had the wrong test done.

I also was told that vestibular rehab might be a good idea. I don’t know if it will help, but you know, I can’t do much of anything… I don’t know how much might be related to this part of things, but if it helps in even a tiny little way, it beats where I am now. So hell, I’ll do it.

Next transmission… don’t hold your breath.

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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

Posted in Getting to the Point, Langerhans Cell Histiocytosis, Photos, Hobbies and Worthwhile Stuff, The Bad, The Good, The Ugly | Leave a comment

Look! A Tumbleweed!

First off, I know you will all be pleased to know I fixed the kernel panic problem I was having on my laptop. Well, no, I didn’t. Someone submitted a patch that fixed it, and since I could boot to an older kernel, the last kernel update fixed the problem. So I guess you can’t be overly impressed.

But I think the moral of the story is… If you don’t have the coding ability, sometimes you just have to sit your ass down and wait for the fix and try to live your life in the meantime. Kind of like… well, my health at the moment.

I kind of figured that it would take a long time for the long suffering, spread thinly Dr. J to find someone to refer me to as we wait for things to bloom. At least, when he said that they’d be calling me in a week, I doubted it. See, you show my file to most doctors, they run screaming from the room as if their hair was on fire. I don’t blame them. I would. But I’m done with having them do that in my presence because I’m friggin’ tired and it’s work to go in and see them. So he’s kind of doing that for me, which I appreciate. But at this rate, things are going to bloom before we find someone.

I’m not saying that because it’s taking that long, I’m saying it because I feel massively icky.

So last weekend I had a one year post thymus removal CT. Of course, some joker keeps putting “lung nodules” as the reason for the CT… and it isn’t. So I get all sorts of weird questions and comments. I was asked if they suspected the suspected malignancy was in my chest. And I thought… I just told you no one knows where the hell it is. (It’s sort of like when I am asked if I have cancer… being asked by a medical worker, I can say I am being seen at the Farber regularly and that’s usually enough. On a form? It doesn’t work and I don’t know what to say, because the people who study histiocytosis don’t know what to say.) I realized later the tech didn’t mean chest, he meant lungs… and no, I’m pretty sure no one thinks it’s in my lungs. Truthfully, yeah. I don’t think so. They don’t think so. In fact, I think that a few doctors think that the nodule is more significant than I do.

I think that nodule was ironically my lucky break. But I won’t know until Thursday, when I see the surgeon. I like him. He is one of those older guys who, when he puts on glasses, looks like a turtle. He always reviews the film right in front of you, and that makes him put on glasses. And he’s showing us lung nodules and enlarged thymus glands and I’m looking at him thinking, “Ha ha! He looks like a turtle, and turtles are so damn awesome! I love turtles! Turtles make this noise like, ‘gnmack!'” And then I have no idea what he said.

So no idea there. I have a copy of the CT images to bring to Dana Farber, but I haven’t looked at them. I mean… I look at my brain MRIs all the time. I know I have no clue what I am seeing, but the last couple I could see were different from earlier studies. I would just be in the dark, thinking of turtles, if I looked at this.

I also had the vestibular and auditory testing done yesterday (as well as a blood lab that had been ordered by Dr. J my last appointment. That was a bunch of fail. I guess orders are good for one day only now, and… well, I think the receptionist on his floor must have thought I was going to grab her, then Mr. Shoe, by the neck — with my teeth — and shake them to death… Like Penny does with her stuffed penguin squeaky. I was just so damned tired, and while it generally is okay to assume normal activities after the vestibular tests, the tech was worried I might be driving home. So walking around and elevator rides caught up with me by the time we got to Dana Farber.)

Yeah, vestibular testing. Balance testing. Videonystagmography. It isn’t as bad as it sounds. I wouldn’t do it for the hell of it. I can tell you I didn’t want to drink anything (I kept being offered water) during this test. I learned stuff.

My sister in law is a wonderful woman with Downs Syndrome. I mean, she is seriously one of the most amazing people I know. In fact, when I say that I would give my crappy health problems to anyone else (maybe with guilt, but not too much) save for two people… she is one of the two people I would spare… and not just because the broad has enough on her plate as is. She is just cool. One of her health issues is jumpy eye movements… Something all who know her knows is because she’s “got vision.”

Beth, or Liz, or Elizabeth, I hear you, sister.

They’ve been seeing this with me a bit. I can’t usually feel it. On extreme right or left (left, especially, I know now.) or upwards eye gazing, my eyes do jump. It’s nystagmus one way and strabismus the other or something or other… It isn’t nearly what my dear sister in law goes through, though. Usually I don’t feel it at all.

Except yesterday. I mean, I knew what it must feel like when you’ve “got vision” often. Dear lord.

I think part of it is it is easier to ignore when you having something to look at. If I focused on the red dot, I was feeling the tug, jump, tug, jump. When my tech put the blinders down on the goggles… Wow. It was dark, I still had to try to look at where the dot was, and… all I could do was fight that damn tug, jump and it was extremely unnerving.

The really awesome part of the test is when the hot and cold air get blown in one ear, then the other. It blows for a minute. Generally, the last fifteen seconds are what kills you. Have I felt that sensation before? Yeah. It’s not what I get normally. But I have. I only felt nauseous after the spinning stopped.

And so I say I’m okay, and we walk over to do a hearing test. And I’m walking into walls, but seriously, this is not unusual. I mean, I was not doing this more than happens normally, especially given that I was tired and uncaffeinated and all sorts of crap like that. And the tech says to me, “Yeah, one side was definitely not like the other. I need to just pinpoint where the problem is coming from.” (As in, it seems, my eyes aren’t connecting to my vestibular system… is it a vestibular problem, a nerve problem, a brain problem?)

Me, because I am a dumbass and every doctor likes to minimize odd findings, says, “Well, I suppose that happens, though, right? I mean, who is exactly the same on both sides? I mean, who is really symmetrical?”

She said, “I need to find out where the problem is originating.” Well, shit. I was thinking this was going to be a waste of time, and that nothing would show up (as I was told when this was suggested two years ago, cough). With any luck, maybe it will actually paint a better picture when paired with my temporal bone CT and even my past MRIs. Yeah, what the hell am I smoking, right?

So the hearing test ought to be quick. It wasn’t bad. It wasn’t as quick as it should be, because I don’t hear quite the same in both ears. However, this seemed to be very much a case of no one is completely symmetrical and a certain amount of abnormal is very normal. It wasn’t enough to worry about, from what I gather. It required a couple more tests to determine this, though.

So I guess I am glad I did it. I mean, maybe it will shed some light. Maybe it won’t. Maybe there’s something that can be done, but… I don’t know. I see the ENT doctor in a week and a half (the tests take a while to go through).

As sick as it sounds, I hope to hell that something shows something they can deal with soon. I know that likely means a confirmation of a disseminated histiocytosis or that something has transformed into a nastier tumor. I am to the point I don’t give a shit. It all sucks, but what sucks worse is feeling like this and not being able to do anything and having to… wait and wonder if the fact I feel worse is worth telling them. I mean, they say it is… But no one wants me to call daily like that. Except my mom. And she’d rather I not call and tell her I feel shitty. I mean, a daily call with a “not shitty” message is preferable.

Hopefully I will update before more tumbleweeds dry up and roll through here again. But writing this has just about swept the floor with me for today. Dust kitties all over my elbows.

 

Posted in Getting to the Point, Langerhans Cell Histiocytosis, The Bad, The Ugly | 3 Comments

2 Updates, 1 Week, With Less Cringing Than Other 2 and 1 Combos

Well, less cringing for you, maybe.

One of the things Dr. J was trying to coordinate as we wait for my Boo Radley cells (sometimes I call them Lenny cells… they mean well, the friggin’ morons. They want to kiss me and hug me and call me George and pat the bunnies of my… connective tissues and internal organs and curl up in epithelial pockets…) to reveal exactly what they are, what they plan to do, or what they’ve tagged along with, was some help in whacking symptoms and such (and possibly even revealing more about the nature of these histiocytes) with another specialist or two on board. The idea being we watch the overall picture, seeing as the rate of change varies, but is fast enough, thanks, and deal meanwhile. The problem being — we weren’t — any of us — sure exactly who is best to see. Not just names of doctors who are willing to deal with this can of worms, but even specialties. Dr. J has done this enough (despite the less than usual nature of these things) and god knows I have done this enough to know that it’s easy for a specialist to say, “Look, it isn’t based in my preferred organ system. Get bent.”

We know it isn’t. We know vaguely, at least, what is likely causing this to go haywire. It’s just not clear right now to determine what to do. Finding people like that takes time, and the sad fact is I’m so motherfriggin’ sick of waiting. I mean, I know there is nothing at all that anyone can do to make this go faster. It’s not like anyone is willfully holding back help. It still is annoying.

Tapering off the prednisone… Uh, yeah. I thought it must be helping a little. Well, okay, in the beginning there was that boost of cortisol energy. That rocks, especially when you have no energy and that at least lets you do stuff like… sweep and mop the floor in the same day, even if it means you have to lie down the rest of the day. But that wears off. And now that I’m tapering more and more (I should be off by Tuesday, but I’m actually going to have a few left over, which I’m going to cut into quarters and take for another three or four days I think… I know the last step is a doozy, and I’d rather make sure my adrenal glands are really ready to work after that last crutch is taken away)… I realize that it wasn’t doing much. I thought it was helping something more. I feel just as shitty.

I know the swelling won’t go away immediately, but let’s put it this way… I knew some of it that was being credited to prednisone was not from it. I lost my scary Eddie Vedder/Mickey Rourke muscled cheeks thanks to prednisone (that was awesome) and maybe that made my eyes look funnier… but I knew that my eyes were getting swellier and swellier over the past… well, since May, at least. My legs, too, especially the left foot. But I think without prednisone I might be able to wear socks again most days.

My cheeks are returning to normal, my eyes are not. It is rough, as my right side is kind of saggy anyway, and so it is hard to tell sometimes what is wrong. Both areas around the eyes are puffed, really puffed… but my left eyeball is pushed forward. It’s wickedly creepy. I’d take a picture, but it’s still slight enough that the angle would have to be correct and it’s really creepy. It is not dramatic, for sure. It’s probably harder to see because of the asymmetry to start with. It’s a lot easier to see now that I have scary cheeks again.

Yeah, I should get that looked at. Pffft. I mean, I know Dr. J did sort of notice. And I should get my head re-MRI’d. It’s a little early. It’s probably called for. And hell, I’m getting the one year thymectomy CT this month. It’d be nice if some of these tests could be consolidated. What am I saying?

I don’t want to wait around to find out what this is going to be because I suck at acknowledging stuff. Oh, look, my eye is hanging out. Shove the bastard back in and get on with it… I don’t want to go to the damn doctor. I’m busy doing… well, I can’t do anything cause I feel crappy, but I don’t want to go to the doctor.

I totally need some diabetic socks though, I think. I don’t know why I’m having a brutal time finding them, but I seem to be. I also need some place that’ll sell me a left shoe in wide and and right one in normal width.

Mostly disappointed the prednisone really did zilch. I think what might help me most (and won’t happen, cause it can’t) is to have a daily IV of whatever that shit is they give me in the ER. I think it’s just mainlining Gatorade, truthfully. I also think a small, PRN oxygen tank might help for those moments that blood won’t circulate right. I know it won’t stop the course of the problem either, but the weird electrolyte crap and the oxygen saturation screwing with stamina and internal temperatures and stuff are a lot more annoying than any pain or whatever. And more stamina and a better electrolyte balance does seem to help my brain out. Not a whole hell of a lot, but those things annoy me most.

Know what else annoys me? Kernel panics and spastic trackpads. Or maybe WordPress is spastic. I’m about to use today’s two ounces of energy to go see if my damn laptop blends, if you know what I mean. Later, guys.

Posted in Langerhans Cell Histiocytosis, Living with, The Bad, The Good, The Ugly | Leave a comment

The View from Where I Stand

A good analogy to describe my health plan right now is that we know I’m going to have to pee really, really badly sometime in the near future, and I’m stuck for the longer than near future inside Penn Station, where the custodians have all gone on strike. Also, the toilet paper factories have all shut down — just like my grandmother always said they would.

Well… sort of. Prednisone taught us all something. I have had blood tests for years that were just not showing real inflammatory responses. I looked like I was having inflammation. I suppose it must be in a way, still… But I responded less than I thought I would a few years ago on prednisone. I responded less — in fact, things have progressed — this time. Therefore, it would seem I really do not have inflammation in the traditional sense.

Friday was a long day. I saw the very awesome Dr. J at Dana Farber (in the nifty new building). It is a nifty new building. It is a lot less confusing, though spread over many more floors, than the old building. I had my blood drawn. I went up to see him. The nurse had a stroke over my blood pressure (I think my heart rate is finally dropping below 100 beats resting, thanks to an increase in propranolol, at least). She immediately dropped the automated blood pressure cuff and grabbed a manual one. I said that I usually tend to look a bit… well, less likely to spontaneously combust when a human takes my blood pressure. She said that wasn’t unusual. Of course, it was still high, but it wasn’t so high that they were paging the cardiac surgeons to be on call for me, either. No, trust me, this has happened.

I am tapering off prednisone. I will be off it entirely next week. I am evidently a problem. I am evidently a problem waiting to happen. The deal is this: they found a tumor in my ass cheek (well, deep in my hip, but not off a bone, more off a lymph trail) that is indicative of histiocytosis. It did not look like a malignant histiocytosis (which is a weird thing to say… I mean, Langerhans Cell Histiocytosis is not technically considered cancer, or a malignancy. It can still kill you if it should decide to. But there are malignant histiocytoses — I think they usually end up in the sarcoma or lymphoma category once they get there though.) Because I now have a history of histiocytosis, I will be followed, with a complete work up for it, by Dana Farber till the end of time. They have me. Yes, I am complaining, but you know damn well I am so not complaining.

But the ass cheek hip tumor was not really… It was a real surprise to me. I have other issues. These other, wider, systemic issues are often seen with histiocytosis of a more disseminated form… or infectious diseases, or immunological diseases, or malignancies. Let’s put it this way: We’ve ruled out the infectious causes. There aren’t many. We really worked the hell out of the immune diseases… and they would respond to prednisone, at least in some regard. Never mind that I tested negative for every last one. In general, histiocytosis in a milder to moderate or at least not disseminated form ought to also respond moreso than I did to prednisone.

This means a few things… I could have a disseminated form of histiocytosis that is just going to take time to pin down, because… it does. I could also have some other malignancy that is either a byproduct of or peripheral to or a natural progression of the histiocytosis. In any event, it does mean we wait and watch and try to deal with it until it shows itself, because depending on what it is… chemotherapy is not one size fits all. In some cases, it would actually be counterproductive if they called it wrong.

I hate feeling like crap, because I can’t do anything, and I hate feeling lazy… I remember telling Dr. J halfway through the visit he had to forgive me as it was honestly past my bedtime. I appreciate that he doesn’t want to do something that could kill me or have no effect as easily as it could help.  I appreciate more that he’s very willing to say that histiocytosis is a part of the picture, a hugely debilitating part, but the whole picture is not in focus yet.  I guess at least we have a mechanism of sorts for what’s going on now. My blood is composed of a bunch moronic cells that develop all stupid and are being quite secretive still (and creative) in their moronity.

He did take a quick glance at my labs as they came in (I think there was some stuff not quite consistent with what they should see with someone on prednisone. Of course, I should have a high white blood cell count… but I think there must have been something more that was counterintuitive. I know I’ve had blood tests on prednisone, but man, I have never seen one so flagged… only one thing was flagged red. And I knew that one… That one made sense).  He also looked at the report of my temporal CT. And then he ordered more labs, which I couldn’t do that day… and I don’t know if I can just pop in and do them.

I do know my CT was not exactly what it ought to be either. Number one, I saw they mentioned the TMJ surgery I had (that I’d forgotten entirely) years ago. I guess it was obvious I’d had it, even though it didn’t make much of an impression on me. But yeah, whatever. Seeing as my right side was mentioned with the words protrusion and orbit, and not my left,  I suspect that there is something going on in the area beyond the usual “nobody is symmetrical” line I’ve gotten from doctors in the past.  I didn’t get a good look at the report, and I don’t see the ENT for another month. I would suspect she’d call, but then… that was actually what made Dr. J go from saying “I hate to send you for more lab work…” to “I’m going to send you for more lab work, I think.”

The pisser is I might have a long haul ahead. The other pisser is that I might not, I might just have a haul. I have a haul either way. C’mon. It is an uneasy feeling to say to a doctor — now, finally — look, I think this isn’t something that’ll kill me in the next three months, or six, or twelve months, but if something doesn’t give and get dealt with pretty damn soon, I just can’t see that we’re going to need to worry about the long term implications of anything we might try in the short to mid range future — and not have the doctor kind of put off those fears or disagree with me or try to say it’s okay.

You think things like this kind of show up either as big honkin’ clear tumors or wacky ass blood results or funny incidentals that… holy cow, you have something nasty going on, or will soon. I get the impression it doesn’t always work that way. I don’t think my case is the way it works usually either… But I am gathering it happens enough that they know at this point, histiocytosis aside, what it is going to blossom into or what it is that is turning on the other nastiness, is a wild card. I think it’s also clear to everyone it is going to blossom into something… or at least, there’s no way I’m leaving Penn Station for Kansas again, ever.

Send toilet paper. At the very least, I can put streamers up all around Penn Station while I wait.

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