Wait, that wasn’t what you were waiting for?

A gentle reminder to friends, family, Romans, and whatnot: I am alas not the only sick person they see at hospitals, and with what all they think is going on, they’re actually taking pediatric oncologists with a specialization in a disorder that’s… the medical equivalent of a duckbilled platypus… away from little kids with brain tumors or pancreatic tumors or adrenal tumors and you know that means they’re taking it seriously, but you also know that means an instant answer on anything is a sign no one is thinking about it in a real way.

I do know the report from MGH made it to my local neuro Friday. I haven’t a clue what was in it, of course, and I guess there was measurable consternation at the time it hogged on the office fax. Then, maybe I’m wrong, because fax breed consternation as a rule anyway. I will probably know something more about where from here this week.

I hope so, just because… this is not cool. We’ll leave it at that.

There you have it. Busted.

More thought on my visit Wednesday and I know that it really was probably about as good going as it could be. We pretty definitively ruled out most other causes, and without any more nasty testing. I live in fear of a lumbar puncture. I mean, not the actual procedure, the day or two thereafter when life is just a big headache (literally) and ambient high suck levels suck higher. If this doctor had any real suspicion it were infectious or viral at all, he’d have done it. And he’d know if there were any chance at all.

Naturally, I haven’t heard from anyone yet. I know my local neuro guy is on vacation till Monday, and I think that he and the MGH doctor will probably talk either to Dana Farber’s people as a team or Dana Farber will be directed toward my GP and local neuro with the knowledge differentials were eliminated elsewhere. On the one hand, it feels like no body feels like this is urgent but you know, me and you and stuff, and on the other hand… doctors don’t outwardly panic and rush things unless you’re bleeding out or spontaneously combusting. I know that they are going as fast as possible, and I appreciate more that the neuro at MGH said he was taking a moment to think about who should see me and how it should be handled because at this point, extraneous visits aren’t doing more than confusing the issue and wasting everyone’s time. The trick is getting to a checkmate in treating and diagnosing in as few moves as possible. Chess timer on.

I know I was taken seriously, and man, it was weird. There were a lot of sick people there. I mean, maybe not at first glance, but then you’d really see the person in the waiting room and think, “Crap, that sucks.” Of course, it sucked to go into the ladies room with its harsh lighting and three quarter length mirror and see myself and think, “Crap… that sucks….”

It blows that it takes that to get er done, but then, there was really no way to know this was the direction we were heading earlier. I can still be mad with the dismissive dorks though.

I know there are many patients in similar larger boats. Not me, it is clearer than day that as much as I wish I needed a bigger boat, I have a frickin’ plank I share with a few others.

And I don’t know why I expected differently… I guess I didn’t, but I know deep down I really wanted to walk out of MGH with a clear answer and feeling better from treatment in less than an hour. I know that’s completely unrealistic. I know that what happened was really about the only logical positive outcome.

And it was positive. The neurologist (and I saw him, not one of the fellows) was seriously a good guy. He listened, poked, and because I look as spectacularly shitty as at least half of the people in the waiting room (the other half were drivers, support, or looking for magazines) he took me seriously when I said, “Look, I know for all intents and purposes it doesn’t look like I’m dying based on even the weird imaging. I know that at this stage that might not mean a lot though.”

Um, so I don’t have a neurological disorder from trauma, infectious/viral/bacterial agents, or an auto-immune neurological disease. My neurological problems then are symptoms and indications something else sucks.  He has not seen something that behaves quite like this, though.

Is histiocytosis a possibility still? I think in an odd way his ruling out by observation and history the other suspects (tuberculosis, sarcoidosis and other nasty unusual things) he left the single set of histiocytic disorders on the table. But he’s not really even seen kids with it (there are I guess about 1400 kids in the US with it at any given time – adults might be a quarter to a third of that figure) so he didn’t feel comfortable (I appreciate this. It bums me out, but I do appreciate it) saying anything beyond the fact that adults do develop it, and he didn’t know how I fit in with that beyond the observation I don’t quite mesh with an infectious or rheumatological multi-system neurological profile.

That means I am now going to see a neuroendocrine guy (I think just to do one last sweep of any possible endocrine stuff. My posterior pituitary is busted, and I’ve had more tests done on my adrenals, thyroid and stuff than I care to think about. Your pituitary’s patootie goes last. I still have a working thyroid. I know.  They are always testing the hell of it. Also, I still don’t have Lyme, and my chances of having histiocytosis are greater than the odds of my ANA panels being clear – completely – every time they have been tested.)

I am also going to Dana Farber, it seems. They have a pediatric histiocytosis department, and because it is rare I think they are okay talking to doctors and possibly referring/handling patients who are young at heart or really short. I can fit either description on a good day, and the latter whenever.

It is weird, it is multi-focal, and no one is saying it isn’t needing addressing anymore. It clearly, clearly does. It’s just it can’t happen fast enough.

And here we go again…

I replaced the drive last night, and at least the laptop is much happier. Hey, I take what I can get. Plus, 2.5 inch hard drives are the friggin’ cutest little things.

I ended up taking a few pictures (those of you that got some mailed, these make me look less shitty… well, this camera is kinder thanks to lower resolution — same sort of reason no one wants to watch porn in HD folks — and the light was kinder.) This is one where I don’t look so bad, or even too sick courtesy of my gaze being diverted by a pug.

The pug was incidentally very bull that I kept setting the timer on the camera and then getting up right when she pounced on me. Why? Because mama is awesome.

You heard it here folks.

Anyway, I am glad I got those pictures. One, my mom knows I didn’t use a garden weasel really now… and because it’s really fallen out. Well… yes and no. Let’s put it this way, and warning, it’s all gonna get gross. I noticed later that day I looked blonder. And my shirt was covered in a gold residue. I thought, wow, it’s raining precious metals!

Yeah. And the next morning, Mr. Shoe said, “You are missing hair.” No duh. But I was. See, like, in spots. Not diffuse, like it kinda had been, like it does when this flares up like it tends to, but in dime or penny sized (the coin, not the pug) spots. And I am kind of… well, it’s cool because my skin feels pretty velvety.

I also ended up making Mr. Shoe take Penny to the vet because I thought something needed expressing. Um, yeah, that would be the spots where my hair is falling out, not Penny’s posterior. My dog was probed by the vet because I… smell.

Honestly, I am really glad I cut the hair, as now I understand why it was driving me batshit.

For those following along (you brave souls) I am headed off to MGH this Wednesday. Gird your loins for me (mainly because prayers and positive thoughts just seem to get me the sort of attention from deities I don’t really want).  The bad news is I feel like hell, and it’s gone downhill greatly since about a week and a half after I saw the neuro here (so since early June). The good news is… well… I am showing all those quirky things that come and go and are sort of borderline there all the time in the nastiest way. The skin, of course… and the blood pressure spikes, and the walking into walls, and… we won’t talk about my neck and hard palate and face. I am sure my droopiness is due to swelling… and since the neuro did spot the cyst and specifically looked for (and didn’t see) any cranial bone issues, I am guessing I either have a lymph node or salivary gland that are being asshats.

Best I can tell, that’s not unusual for what they suspect, nor is it necessarily a bad sign. I mean, I hope it isn’t a skull problem… that would be a nastier problem to tackle. Okay… it’s all nasty, but some things are better than others.

I can tell you this: At this point, it doesn’t matter much. I mean, I think Mr. Shoe and I are both pretty much sure that the local neuro is spot on with the general sort of disorder, and Langerhans’ Cell seems like it is consistent (but the kicker is they all kind of overlap). And I think I’m going to end up going in, and getting a good look at just about every damn bit of me, and treated like they treat people with this stuff. Of which there aren’t many. Um… Well, there are far fewer kids than I’d thought coming through, and adults… they tend to follow kid treatment protocols except that adults seem to not stick in remission all that long and it can kick your ass really hard when it comes back either way. I mean, fine, still not malignant, but it’s not like it has really frickin’ good intentions, either, so they tend to smack it real hard, back off after several months a bit as much as possible, and follow and re-assess.

I think probably the worst bit is that unlike my sweet GP, most doctors don’t ask what the hell it is… I love my sleep doctor, and he kind of thought he knew, I think, and it was obvious he guessed wrong. That’s a hard thing to deal with, really. They don’t teach this in medical school, cause it doesn’t happen that often and you know… you only see it in certain populations. Except when it is elsewhere. This little explanation puts it nicely. And so far… Well, let’s all be girding some loins on my behalf this week, shall we?

He was mortified by the one inch comb setting maximum. I was two inches from taking the scissors we cut frick and dingleberries out of Norman’s hair with and just chopping it. I mean, last night I was miserable.

Mr. Shoe was sad last night. He got up really early and went to Walgreens and got a clipper set.

He went to work. He didn’t want to see.

Do you know why people don’t cut their own hair? It’s hard if you wear glasses. Also, if you don’t have lots of mirrors… the back is kind of challenging.

I am so glad I did it, though. Holy mother of a bearded clam dragon, it feels better. I mean, ears, eyes and face still totally irritated thanks to… something. I think I know what is vaguely. But I can’t do much about that part – I could stop the hair poking and shedding insanity. It helps.

Makes hat wearing better, too. Hats helped with itchy shedding feeling, but forced hair into ears and face a lot.

And showering is much easier (I’m not tangled in my own hair wreckage).

Truth is, it isn’t the worst haircut I ever had. And I could take breaks during the process. I thought I would be a little upset, or feel somewhat… weird. Once it was away from my ears and eyes I was like, “Woooooooooohoooooo!”

My main aim was to be comfortable and have less clean up (once we removed the initial sasquatch remains). Done. I got a bonus where my face, which is normally not compatible with chin length hair, is now so grossly sick looking that chin length hair makes me look healthier. I am really pleased that it doesn’t look that weird. I mean, all things considered.

You could tell it was thinner last year (I also think consistency changed, which makes it feel weirder than it probably is). This year, there are a few small bare patches. I don’t like to say that, because it’s an all over thing generally, but there’s a pretty good map of thinness on my head that shows affected nerves and probably sweat patterns.  More than anything it is annoying. It pokes in my already irritated ears, eyes and face, and then makes me feel like I have the crawlies. (So that jumping spider that fell out of my shirt today was a real wake up call… no, it isn’t just your hair. I put the spider outside, by the way. I adore jumping spiders. At least in North America, they have such big chips on such tiny little shoulders.) And of course, the aforementioned shedding everywhere, which is a pain to clean up after, and… yeah.  I have hats and stuff,  and it helps with the head irritation a little, but mostly it’s the fact it is still pretty long for stuff that falls out in ginormous handfuls.

And getting it cut is rough. I mean, I have no energy to do so. Yes, it does take energy to sit in a chair, even if the hair dresser says nothing. More than I have, folks, which is sad.  Plus, they try to style it. Like I would do more than wash, towel off, and comb it even if I felt okay… Okay, like I would do more than that and it wouldn’t still look like a bird habitat.  And if it is falling out like this, then comes the pitching of the products. It isn’t breaking, it is falling out. Different. And even if I were inclined to have extensions stuck on (oh yay, that sounds doubly annoying!) it’d probably be a waste, given that the stuff we’d extend falls out when you touch it, or sweat.

I kinda want to just grab one of those “I have little boys and a husband who could seriously give a rat’s ass” hair systems and set it to four or five and just buzz it off, but I am also a little afraid. Not because it’ll look funny (oh, hell, it will look funny, that’s a given. But it’s nice to make people laugh.)  I’m afraid because I think it’ll seem totally drama llama prior to going in to Mass General next month.  Like I’m expecting something… Actually, you know, my guess is that eventually they will either do some chemo and/or cut the little sucker out of my brain, but I don’t know if the chemo is enough to cause total shedding (sometimes they find, depending on what’s going on, smaller doses of different sorts of rogue disease clobberers in tandem work best). So I do have this annoying feeling that they will know this and think I’m… I dunno… People think dumb things… Like I’d be bracing for it (no, that’s what blabbing online about it is, not shaving my annoying fuzz off). Why do I think anything would seem unreasonable along those lines at this stage? I mean, even if nothing they treated it with made my hair fall out more (or keep it from falling out… unlikely, as just about everything tends to cause that, but at this rate, it might seem like less shedding) I’d like it to be gone for a little while mostly just so damned annoying.

I don’t have to bring up the dogs’ digestive tracts again, do I? Seriously annoying for everyone at home, and the city water and sewer guys, too.

Truthfully, at this rate, might not have a choice, and I actually look pretty good in hats. I am not so much a scarf person, because then I want an eye patch and a peg leg. And a monkey or a parrot… Parrots are easier to get hold of, but a monkey is handy (and opposable thumby!)

No, parrots and monkeys are scary weird smart… And an eye patch and peg leg are not really great with my already unsteady self. But I do tend to say Arrrrrr! and tell Mr. Shoe to swab the poop deck too often when I wear a head scarf. It isn’t encouraged, needless to say.

I know why bad things happen to good people. I was thinking… (the soul in question – not anyone in my immediate area – that prompted this thought has had a friggin’ nightmare of a year, and is seriously the nicest guy, with a wife and daughters to match…) It isn’t that shitty stuff happens more often to good people, it is just human nature to notice the shittiness more when it happens to people who are genuinely nice.

I mean, shitty stuff happens to bad people at a similar rate. It’s just that those bastards had it coming, therefore bad stuff is converted to poetic justice. And it never seems like justice enough, but I think it’s a matter of scale.

Evidently, you can still pee a bazillion times an hour in huge quantities and still get yourself all low blood sodium-licious.  I was feeling pretty… nasty, but not like the weird loopy “time’s slowed down” nasty that I had last time out. I actually felt a bit like I imagine the beginning of meningitis or something must feel, or what it must feel like after a lumbar puncture. If I laid on the bed with my spine pretty straight, felt pretty okay. If I propped up a little, or sat upright even leaning on something, or had to get up to pee repeatedly… ugh. Not so much the headache (I have had worse, trust me), but the feeling that I might do a whole Exorcist re-enactment, except instead of spinning, my head would just pop off. And of course, during this process, I was peeing. And peeing. I also felt bony, but noticed my weight had gone up a little Saturday morning, and you know… you couldn’t tell. It was enough that you should have.

Then suddenly the peeing went normal (you all wanted to know, right?) and I thought, “Aw, crap, here we go again.”  In about eight hours, I was feeling loopy-ish, still not like it was… I mean, horrid, but not like it was. I was pretty crap on Saturday, but by Sunday I lost the loopy (now I’m just baseline somewhere in left field) and incidentally, lost eight pounds (in less than 24 hours). I mean, that’s not good news for anyone ever really, not that fast, and I’m wondering where the hell it all was… but I think that might have been the point where the vasopressin stopped being a jerk. And no, I’ve not taken desmopressin since Friday… I probably could, but truthfully, it’s still being better without it than it was with it last week… Erratic. So they’d probably say the diabetes insipidus is transient, because I think there’s certain criteria that SIADHS (Syndrome of Inappropriate Anti-Diuretic Hormone Secretion) needs to meet and… even though the endocrinologist said that had to be going on after the surgery initially, the only thing that I’m sure of is the whole “inappropriate” end of the deal.

Evidently, I am inappropriate. Heh. I don’t know much else… But I will be seeing the actual attending who the local neurologist wanted me to see July 14th. Now hush, please, let me finish. I do not know if we have to do any testing prior to this as follow up to last week’s presentation, or if the clinical conference guys just said, “Let’s just give her to Dr. V, he treats everything… Who’s buying the first round tonight?”  I know that I definitely have to call the local neurologist, because I don’t know if I need to get the CD of my MRI in September back or if they have it at MGH, and I have to let him and the endocrinologist know about this last bit of fun. Technically, I should have gone to the ER, but I didn’t realize what it was till it was pretty much over (I bet it’s still low, but not “holy crap, everyone panic!” low, and sometimes, unaware medical personnel make this stuff worse). So it’ll be anecdotal, I guess, but I kinda think that the endocrinologist knows that sometimes the person in question knows best how they feel here, and nobody wants to mess with her. Seriously, that’s why I like her.

So the local neuro might have more detail. I just spoke to the chick who schedules stuff for the doctor at MGH. I might be getting more news of appointments (via MGH) as time goes on — insurance approvals and departments schedule differently in a place that size, or it might all start here. They might just hold off till then. I know I was discussed (the office lady at MGH said that the clinic resulted, in the very least, at a request for the earliest possible appointment with the attending, which is the July appointment), just not how much I was discussed. I think it’s both kinda good and kinda bad that I can get in with this guy in that short amount of time. I mean, it’s good because obviously I’m not keeling over and it’s not like someone missed that second brain in my skull or something. It’s good and bad, I think, to skip the fellows and go directly to the attending (unless you’re a repeat, and get a new fellow every time. We all know that sucks. Sometimes the youngins have decent ideas, though, and then you can watch the attending squash the curiosity out of their eyes. Sometimes the youngins are stressed out and don’t really think, too. Same with attendings, I guess.) It’s bad because I think that if this guy wants to see you, you are probably… interesting in a clinic where interesting is pretty much par for the course. And really, that’s only cool on the Discovery Health Channel.

And yes, before any one says it,  one of the more likely histiocytosis forms has been on Mystery Diagnosis and House. I’m pretty sure that I’m speaking for the soul on MD as well when I say that it could have just stayed on House and that’d be just fine.

I called the neurologist yesterday, and was actually sorta surprised he called back. I was pretty sure he was implying that he was putting my case through MGH’s clinical conference thingamabobs, which are once a week deals, and I had no idea exactly how long that would take to get lined up. But there’s that part of me that says that he’s a busy guy, MGH is a big place, and computer systems magically lose requests, based on how frickin’ crucial they are, so maybe something fell through and after a week and a half, it wouldn’t be unreasonable to check.

It seems that they do these clinical case presentations on Wednesdays, and today I’m up on the block. Jeez, like my damn ears and face and head haven’t had that ringing, twangy feeling anyway. They all talk, and then they talk to my neurologist here, and then I have a plan to work from.

So here’s the deal: I have what is apparently a benign cyst in the pituitary area. It was there on my MRI in September (the one I thought looked… not like older ones, though I’d be damned if I could say why. I had a couple to compare it with, however). He does not think it looked significantly different this time around… At least, not to the point that flags would raise. Then again, it was missed twice in the first place, so take that for what it’s worth. (Truthfully, I get the impression they tend to spot the ones that are horrendously obvious and dangerous or the ones that are mostly incidental and asymptomatic, and the symptomatic, slightly oddly placed anomalies that present with an odd set of symptoms — diabetes insipidus as opposed to odd cortisol or thyroid/growth/you name it hormones — are easy to overlook. I have heard more people with diabetes insipidus say it was missed the first three or four MRI readings.)

Best I can tell, this is consistent with his suspicion of what’s going on. I am hoping that because I have other stuff involved that’s a little easier to get at, we won’t need to go in after it. I don’t get the impression that it’s necessarily squashing anything horribly (although the process that ultimately makes it grow might be squashing things, which might be why my face feels weird). Usually pituitary surgery for things other than diabetes insipidus result in… temporary diabetes insipidus (I guess it clears in a few months). I haven’t found too many people who have had it resolve if it existed beforehand. All things considered, it is also a small part of the equation, so I’m hoping they can poke skin and lymph nodes and just about anything but that… because from what I gather, inflammatory causes of that stuff (as this apparently looks to them right now) tend to respond to stuff that cuts down on inflammation.

It does all kind of start to add up. Okay… the thymus was just weird, and I guess even if I do have Langerhans Cell histiocytosis (or a non-Langerhans type) it may not have revealed it — because they know people with this stuff have enlarged thymuses much of the time, but it’s hard to tell why because a few have had previous rounds of chemo, which makes things look different. And when they have looked for this sort of stuff in other people’s oversized thymus glands (they do occasionally, I guess),  there’s as much chance they’ll see it there as not, existence of disease be damned. So it’s a weird thing, but not an incongruous weird thing.

For now, I sit tight. They are pretty confident that (this is an awkward thing to say) it is not cancer, even for all intents and purposes it kind of behaves like one. I don’t know how accurate my take is on this, but pretty much all of the histiocytosis type things originate in the bone marrow — they are sort of like leukemia, but then they aren’t. They seem to end up creating and dumping ginormous amounts of cells in places you’d wish they didn’t — usually your pituitary, your bones, your lungs, your skin — but it’s less a cancer type action than an immune response. Not like multiple sclerosis, which causes your immune system to attack the myelin on your nerves and strip it away, but sort of similar. Maybe closer to sarcoidosis, where your immune system randomly attacks and leaves scars and nodules on organs.  It’s a crazy-ass sort of category of disorders that looks like it ought to offer some insight into the link between cancer and immune system dysfunction, because it’s technically both, and technically neither.

You’d think more researchers would want to study that. And with essentially no concrete or remotely suggestive blood markers (just wait for the growths to start), you can see where this is a long haul much of the time. I also have a feeling that treating this will be pretty much the same — whether testing is conclusive for anything at all. I think my doctors are about as done as I am, and too much waiting is clearly no longer a reasonable request. I think it could come together quite quickly, or take a few years to be sure what it is, but at this point, they all are hit with the same set of hammers, with the force of blows adjusted as things change.

I’m okay with that. Then, I also had this weird feeling I am not the first person who reacted to the neurologist telling me that I had a cyst on my brain with the statement, “Ah, cool. That’s good to know.” And yes, so much easier to hear that than that everything was just fine, go home, nothing to see here, move along…

I am kinda hoping I do hear more this week. I have no idea what’ll be done here or in town or what. I think once they start getting on with it, they’ll get on with it, too. And that’ll freak me out, but hey… At least I’m not leaking fossil fuel all over.