Amnesia, herniation, and how the heck a speech bulb works

For Crowscalling, Celeste, and Bonnie (was it Bonnie? Ah, yes. Bonnie.) (And why do I read "Crowscalling" as "Crowsculling"? It gives me a charming mental picture of a whole eight of crows pulling vigorously at oars as a sparrow coxswain gives it to 'em.) (But enough about my Lortab frenzies.)

Bonnie asks, What the heck is a herniated brain, anyhow?

And I resist the temptation to reply, A brain that's not working very well any more.

Although that's basically it. Herniation is a condition where your brain gets squooshed out of position by increased intracranial pressure. A lot of things can cause that increase in ICP: stroke, tumor, hemorrhage, blunt injury, you name it. Some of those things can be stopped easily before the brain squooshes too far; others are trickier to fix.

There are actually six different ways your brain can squoosh inconveniently. Those ways are divided into two groups: the supratentorial and the infratentorial. The name "-tentorial" comes from an anatomical landmark; what you need to know is that there are four ways of squooshing the brain up high and two of squooshing it down low. And, you know, that it's...deadly, unless you stop it and fix it.

Herniation is thankfully pretty rare. Your brain can take a lot before it moves so far to one side or the other, or downward or upward, that structures actually get crushed and torn and you die. Plus, a lot of things happen *prior* to things getting to that point that clue the average observer in that Things Aren't Right. That's not to say that herniation doesn't happen suddenly--it can, and I've seen it--but thankfully, that's not all that common.

Now, on to Celeste's question, which is something along the lines of What up with all the amnesiacs in the daytime soaps, yo? Wouldn't all these people be running around with severe neurological injuries if they had amnesia this often in real life?

Celeste has, as we say in the business, hit it on the head. Amnesia is indeed very rare and is accompanied either by a pretty complex neurological injury (some strokes can do it, to varying degrees) or by a physiological and psychological disorder called "conversion disorder".

Now, this doesn't mean that people with amnesia are either completely gorked or crazy. I would point you to Oliver Sacks, who writes interesting stories about patients of his who had perfectly intact distant memories, but who couldn't form new ones. That's a type of amnesia. There are other types that wipe out middle-range memory or even old memories. It all depends on what hits your brain where. Thankfully--again--this is really rare, partly because the brain is amazingly tough, and partly because we have all these neat redundant systems built into it.

Conversion disorder is a little trickier. It's something that's normally dealt with by both psychiatrists and neurologists, because there are components of the syndrome that have to be handled in different ways. Horribly oversimplified, conversion disorder is the body's response to extreme stress. You get sick in one way or another, or have a traumatic event happen, and as you're coming out of it, you suddenly start getting sicker in weirder ways than anybody ever thought possible.

This is not malingering, and the people with CD aren't crazy. It's not something like Munchausen, where the person is actively trying to make himself sick. Instead, the protective functions of the brain and body kick in overactively in an attempt to protect the person. (Amnesia is considered one of the rarest manifestations of CD; I've seen it exactly once.) When it starts to happen, it's frightening and often more debilitating than the original insult to the person was.

And finally, to Crowscalling's question: How the heck is that speech-bulb thingy supposed to function?

To answer that question, I'm going to have to share with you some of the crash course in oral and oropharyngeal anatomy I've gotten in the last few weeks.

Look at your mouth. Now look at mine. Now back to your...shit, sorry. I turned over two pages at once.

Okay. Look at your mouth. You see how you've got a nice bony palate in the front and a nice flexible one in the back? Those help you make specific consonant sounds, like "K" and "L" and "M" and even "S" and "B". You'd be surprised how much happens at the back of your throat when you talk.

When you lose that nice flexible dome-shaped soft palate and/or the structures that make up the back of your throat, two things happen: First, you can't say "B" (comes out more like "M") or any number of other things. And, you sound like Fran Drescher gone crazy, because there's so much air escaping through your nose. "Hypernasality" is how they describe it formally; that's sort of like calling the ocean "moist".

A speech bulb is something about the size and shape of...oh, heck, I dunno...a chicken drummette, like you'd get in a wings bucket? Or maybe the first joint of your thumb? Anyway, it's not huge, but it's not petite. It's job is to sit up in the back of your throat and cover any holes there, and also cover any holes in your soft palate. That way you can sound almost completely normal right away. It moves the airflow from your sinuses to out of your piehole, and it gives your tongue and throat something to press and move against to form words.

You wouldn't think a little chunk of plastic would do all that, but it is AMAZING.

(Which makes me wonder: If I spoke French, or German, or, Frog help me, Danish with all its back-of-the-throat Rs and stuff, would my speech bulb be shaped differently? Must remember to ask Dr. DDS.)

And thus endeth the latest edition of You Ask, I'll Oversimplify! Further questions--on any topic, not just neuroscience or speech bulbs or my current favorite toenail polish--are welcome in the comments.

Oh, fer cryin' out.....sheesh.

I saw Dr. Crane today. He was amused by my story of Dr. DDS's distress (say that five times fast without an obdurator) at my inability to tolerate the speaking bulb on the second obdurator, and agreed that nobody did anything wrong; we just got ahead of ourselves. He took at look at Obdurator 1.5 and asked me to take it out so he could look at the hole in my head.

Dr. Crane: "You got that out yet?"

Me: "No."

Dr. Crane: "Why not?"

Me: "I ain't showin' you the hole in my head unless you give me a nickel."

Dr. Crane solemnly borrowed a nickel from his nurse, handed it to me, and shined the light in my mouth. He told me later that he really ought to be getting a cut of whatever I make on that trick. Then, after turning away to his notes for a moment, he turned back and said (again solemnly), "See what I did there? CUT! Ha."

Anyway, I'm healing well, but as he said, I have a lot of healing left to do. I can probably go back to work in two weeks or thereabouts, provided I'm intelligible enough and have stamina enough to wear the obdurator for twelve hours at work.

And in the sheesh....department, I got a very snippy letter today from the folks at CoUnited InterInsurance SuperCorp. Seems they'd been trying to get hold of me on the phone, and couldn't manage to do so, and could I please call them at my earliest opportunity to make sure that CoUnited InterInsurance SuperCorp was facilitating the Best Care Possible for me?

As is the case on every. single. piece of paperwork. I get. from the insurance company, this one had a header with my diagnosis and treatment: LGPA WITH RIGHT TOTAL PALATECTOMY, ALVEOLAR RESECTION, LEFT PARTIAL PALATECTOMY.

This particular piece of paperwork had been signed by either a human or a very human-like computer, in ball-point-pen. Yet it had not occurred to this human--or to any other one at CUIISC--that I might have trouble talking because I have nothing left of the back of my throat or the roof of my mouth.

I'm going to write the happy people at CUIISC a very nice letter in the morning, telling them that I'm sorry I've missed their calls and that I'll be happy to return them as soon as I am physically able to speak. But only if they give me a nickel first.

Yawning, swimming, humming, yelling, whispering, spitting, brushing teeth, coughing, coughing up phlegm

How the hell do I do it now?

And what the hell is your uvula for?

Turns out that both of those curious questions from Minions can be answered in the same post. Anon asked the first question and Wayne the second. Let's take that second question first:

Basically, your uvula keeps liquids and solids from going into the back of your nasal cavity from the back of your throat. It doesn't keep things out of your trachea; that's a totally different job and one that's handled nicely by the epiglottis. Uvulas (uvulai? uvulae?) are also uvu-useful if you speak a language with a lot of crazy fricatives like Turkish or, well, I guess German uses the uvula a lot. The folks who speak languages like !Kung also use their uvulas/i/e to make what are called "uvulual consonants" or "that clicky noise". English speakers find it handy in pronounding "b" sounds, which can come out like "m" if you don't uvulate.

Uvulas, in short, are handy to have, but you can certainly do without one. You'll snort soup into your nose now and then, but you can get used to anything.

As for swimming, yawning, humming, yelling, whispering, spitting, brushing teeth, coughing, coughing up phlegm...I've tried most of those things (except swimming) with varying success.

Yelling I cannot do. Not because I'm missing the bits that would keep me from doing it, but because my throat is, as yet, too damned sore to be yelled out of. The rest of the things have either no changes (coughing, whispering, humming, spitting, coughing up phlegm) or very strange changes (yawning, because my jaw muscles are hugely sore, brushing teeth because well, I'll get to that in a second).

Let's start with the basics: swallowing liquid. It's tricky, but your body will adjust in about ten hours (if you practice a lot with tiny amounts of liquid) to swallowing in very careful, delineated stages. Since I don't have a flap to close off the back of my sinuses any longer, a swallow takes about 1/3 longer than it used to, and I can swallow about half as much at a time as I could before surgery.

Moving on to things you might want to be able to do, like coughing up crap from a lung, I was surprised: that and spitting did not change at all. I used suction for the first 24 hours to clear my secretions once I'd coughed 'em into my mouth, but that was because my tongue was so swollen I couldn't get it out of the way. Now, it's just like it was before.

Brushing teeth....that's the biggest change. That's the one thing I do every day, twice a day (and will be doing more often once I start radiation) that reminds me that there's actually something going on in there.

See, because I have no schnozz-closure flap, food and fluid can get up in my sinuses. And because I'm missing my right eustachian tube, all kinds of ick can get back in there, too. And there's this magnificent hole in my right upper jaw that used to hold a tooth, and some other, smaller holes I haven't quite figured out the purpose of. Oh, and the whole back of my throat is gone. So there's a lot of places for crap to hang out and ferment and get gross.

When the prosthodontist took out the first obdurator--the one that had been sewn in that I couldn't remove--I nearly passed out. It was easily in the top five of Gross Things I Have Seen, and certainly the grossest thing ever taken out of my body.

So. How do I brush my teeth, keeping in mind that I don't want to get toothpaste into my sinuses?

Step one: take out the oburator and scrub it with a soft toothbrush and toothpaste, then stick it into its cute little Obdurator Hut and cover it with tap water.

Step two: Mix up a pint of sinus rinse (buffered normal saline).

Step three: Brush teeth for two minutes using Sonicare toothbrush. Using plain toothbrush, scrape tongue from back-to-front energetically, then spit repeatedly. (Note that I cannot swish water around in my mouth; it'll come shooting out my nose and that HURTS when there's mint involved.)

Step four: Floss teeth, using the low-trauma method of flossing (morning and night only).

Step five: Brush teeth for two minutes using Sonicare toothbrush. (The oral surgeon recommends that I brush for a total of ten minutes a day in four to five sessions. This will help keep my gums and teeth healthy during radiation. I'm working up to that now.) Scrub tongue and spit.

Step six (where it gets gross): Working from back to front as best as I can, use the sinus rinse kit bottle to rinse out all the little crevices and healing bits at the back of what used to be a mouth. Use at least two pints of fluid for this, as the world's nastiest stuff tends to get loosened up by the first pint and flushed out by the second.

Step seven (as if step six weren't enough): Mix up two more pints of sinus rinse and use them to rinse my sinuses out. Some people apparently use a Water-Pik or other comparable instrument to do this, with home-made saline solution. I am not that butch.

Step eight--almost done! Rinse for thirty seconds with carefully-swished-around chlorhexidine 12% wash and spit. Try to ignore the taste.

Very niggly, very time-consuming, and not at all sexy. This is not the sort of routine you want to have to go through on a first date. Plus, it's decidedly strange to be rinsing out the inside of your own head as a part of your daily ablutions. It would be easier if I had a flip-top head.

Which reminds me: it's time to start the routine. And no, I am NOT providing pictures of this.

Abnormal posturing made overly simple by request!

I forgot who asked for this, but it's a good topic for Auntie Jo's Occasional Ridiculously Oversimplified Take on Neuroscience. This time, we'll look at Abnormal Posturing and Why It's A Bad Thing.

There are a lot of different abnormal postures out there, "abnormal posture" being defined as "the way that your body is holding itself, involuntarily, that clues us in that something is not right with you." If you're sitting leaned over to one side at about 45 degrees, that's an abnormal posture. If you're standing, kind of hunched over, with your arms akimbo, that's an abnormal posture. Those aren't as bad, though, as two of the most basic postures, decorticate and decerebrate. We call them "responses" or "poses", by the way, because they show up in response to external stimuli.

Decorticate posturing, also called flexor response or mummy pose, means that you've got fairly substantial damage to a number of structures in the brain that normally keep you from getting stuck in a flexed position. (You want me to be more specific? Fine, but don't start complaining when I start using terms like rubrospinal tract and vestibulospinal extension tracts.) You're lying down with your arms bent and your hands in fists on your chest, like a mummy.

Decorticate posturing is a bad deal, because it usually means damage to the thalamus (without which you really can't get along), the midbrain, and the cerebral hemispheres, which is where all your thinking, speaking, and remembering goes on. Essentially, you could "recover" from the sorts of injuries that would lead you to show decorticate posturing, but you'd not do much more going forward than stare and twitch.

Decerebrate posturing is also called extensor posturing or decerebrate rigidity. Instead of folding your hands onto your chest as you would in decorticate posturing, your hands are straight down by your sides. Your jaws are often clenched. Sometimes this only happens on one side, or only happens in the arms.

Decerebrate posturing is considered even worse than decorticate, for a couple of reasons. First, it shows up in response to a brain stem injury. Brain stem injuries are those that are going to have negative impactfulness, as the government guys say, on your ability to breathe, regulate your own blood pressure, and continue on living. Second, decerebrate posturing that shows up after a person's been doing decorticate posturing for a while indicates that the brain has just herniated down through the brainstem and the game's over.

Now, you can go back and forth from decorticate to decerebrate, but eventually, if you're not treated promptly and things like your intracranial pressure and brain injuries aren't stabilized, you're going to go all decerebrate on your own self and things will get very bad indeed.

Interestingly, I've seen quite a few cases where the patient has gone from decorticate to decerebrate posturing in a fairly short period of time. All of those cases were back when Sunnydale had a run on people with Creutzfeld-Jakob Disease (aka "Mad Cow", but without a cow involved--the normal CJD is a genetic thing). Everybody would start out a little disengaged, a little forgetful, a teeny bit aphasic. They would then progress to decorticate posturing in reponse to stimulus, then on to a really marked decerebrate posturing with the oddest, most eerie catlike meowing noises as a response to even gentle touch.

That last sentence just led me to sit, chin in hand, thinking about that two-year stretch of lots of CJD cases. And to be very glad I'm not doing as much of that any more. And to miss Sunnydale a bit.

Anybody got any fun ideas for Auntie Jo's next Oversimplification of Neuroscience lecture? Leave 'em in the comments!

Obdurator, oh would you help me place this call?

(Sorry. The only other song-pun I could come up with would've been "OburATOR obdurATOR OB dur ATOR obdurATOR obdurATOR OB dur ATOR" to the tune of "Amadeus", and that one's already gotten me threatened.)

Obdurator Numero Dos went into my mouth and, eek, the back of my throat today. The process of molding these little dudes and fitting them is fascinating because I do not understand it at all, but it seems to work. Next time, I promise, I'll get into posturing and why it's bad for a brain.

So: Obdurator. The primary job of this thing, which looks like the mother of all retainer tops and is held in place by four tooth-wires, is to keep the wearer (me) from shooting liquids and solids out of her nose, and to keep her from choking. It also makes speech much more intelligible.

The first obdurator covered only my hard palate. That meant in practical terms that I could sip small amounts of liquid and eat very soft or very hard food--nothing in between--and that my friends could understand about 90% of what I said. All in all, it wasn't a bad deal, aside from the fact that it couldn't be removed for the first week (Dr. Crane had to tie it to my teeth with some suture, long story) and thus it got to be The Single Nastiest Thing I Have EVER Seen. I'll spare you that story.

This second obdurator is really *cool*. Not only does it cover the part of my hard palate that it did before, it takes care of the soft palate that isn't there any longer as well. Parts of it are hard, parts of it are flexible, and parts of it are strangely in-between. To give you some idea of what this thing is doing, look at the picture above.

See the pointer that's labelled "Hard Palate"? Take everything from the tip of that pointer to your left/illustration's right away. Take it off, throw it out, and leave a fucking huge hole there instead. I searched Google Images for some time, and even logged in to the various med portals I can get to through work, and I can't find anything even remotely comparable. I'm missing not only that much palate, but that much of the back of my throat as well.

You can see/imagine that the loss of that much soft palate is a big deal. Not only does your soft palate keep you from sounding like a Charlie Brown cartoon adult when you speak, but it moves around to shut off your airway when you swallow, it flexes to help you swallow more easily, it bounces up and down with certain consonant sounds...it does a lot. It's immensely flexible and muscular and can move about eight different ways without your even realizing it.

The prosthetic guy made three molds of my soft palate and the back of my throat. The first was with a hard-setting, awful-tasting acrylic, and focused on the center back of my throat and the palatal portion of my nasal airway. The second was made of this slightly squishy, foamy sort of stuff, and goes from the spot where my right second molar used to be to just to the right of midline of my palate. The third is I guess kind of flexible a little; I can't dent it with a fingernail, but it doesn't feel as rigid as the acrylic, and bridges those other two bits.

Unfortunately, this one only kind-of-sort-of works at the moment. The primary problem is that I've only got a week's worth of healing done on the soft stuff in the back of my throat, so swallowing feels like I've got strep. The other problem is that somehow, the rigid part of the prosthesis, the middle bit, shuts off my nasal airway unless I hold my head in one specific position. I won't be sleeping in this obdurator, so that doesn't much matter, but it is a little freaky. Plus, I hate breathing through my mouth.

But think of it: one week ago, a surgeon took out most of the back of my mouth and enough of the back of my throat that I am a freakshow. Today, I can speak intelligibly, sounding only as though I have a bad head cold. The prosthetics dude says I will sound completely normal--not hypernasal, not like a muted trumpet--in just a couple more weeks.

A. Mazing.

When I start my second, after-nursing career, I think it might have to have something to do with dental prosthetics. It's unbelievable the difference an hour and a half in the chair did for me today.

I sound like myself again. My voice is back.

PROOF? YOU CAN'T HANDLE THE PROOF.

Now everybody go donate a fiver so Mama can buy some more Manic Panic.

Did I mention? I shaved my head.

Not sure if I'd mentioned that already, but I did. I have 3/4-inch-long stubble, dyed bright screaming red, all over my head. It's incredibly sleek and cute and makes me look like I'm 18 again.

I figured it was easier to shave it now than watch it come out in huge clumps during radiation.

Briefly: things I have learned:

1. Colace elixir hurts like a sonofabitch on a sore throat. I don't know what's in the stuff, but yeah, that was indeed the worst pain I've ever felt.

2. There is no good way to prevent nasal regurgitation. You can tip your head back, tip it forward, take tiny sips, swallow multiple times--it doesn't matter. If the liquid feels like shooting out of your nose, it'll shoot out of your nose.

3. Even if you don't have the back of your throat any more, whatever is there will get very sore if you try to talk with your surgical obdurator in. I felt so good yesterday that I talked up a storm, then stretched my jaw muscles, then went off to bed. I woke up at 1 ack emma when I rolled onto my right side. Two doses of pain meds and a Benadryl-and-wine cocktail later, I'm almost comfortable.

4. Ramen, which would seem like a good thing to eat, is not. Neither are refried beans, strangely. Applesauce, yogurt, ice cream, and pita chips are good. And you're eventually going to sneeze, and everything that ended up on top of your obdurator is going to reappear, so just get used to it.

5. If you have no back-of-throat, you will not be able to sip from a cup or drink through a straw. There will be no suction there.

6. Pills are doable, but only with yogurt rather than a liquid.

7. Whatever you do, do NOT eat anything tomato-based for the first several days after surgery. Trust me when I say that even V-8 is startlingly acidic.

I keep trying to post, but then the medication hits.

I have the generic version of Lortab Elixir in the Knock-'Em-Out, Kick-'Em-Overboard strength, so I go from sort-of making sense to not making any sense at all.

First, to recap: surgery was a success. Dr. Crane did remove all my soft palate and a whole lot of my hard palate, but the DDS who's doing the obdurator revision assures me that it's better this way. Dr. Crane and his folks got at least a centimeter margin all the way around the lesion, and only had to take one tooth out rather than two.

It's amazing how well this has gone from the start. Things went just as well on Wednesday: the anesthesiologist induced me with no drama, I woke up in post-op, and from the minute I woke up remembered everything that happened.

I didn't even have any nausea. None at all. That's how amazing this has been.

I'll see Dr. Crane again a week from yesterday and the DDS sometime before then. I don't know when I'll start radiation; I imagine we'll talk about that during the first follow-up appointment.

Meanwhile, Max is on the living room rug and the boys have invaded Friend Pens' personal space to a shameful degree. It's a little rainy and very cloudy here, and I have stacks of books and movies to get through, if I don't feel like napping.

Thanks, everybody, for all your good wishes. It was so comforting to log on from the hospital bed and see that the world still existed outside!

And whee! There's the pain meds. Guacamole over vanilla ice cream sure sounds good right now.

Home again, home again.

I came home today from the hospital after twenty-four hours of Dilaudid PCA and Lortab elixir. (Dilaudid is great and all, but it was really too strong for me.)

In order of importance:

My airway is clear

I sound like Mushmouth from the old Fat Albert show

I can swallow small amounts of not-pointy things

Occasionally I get nasal regurgitation, which is gross

There is actually less pain with this than there was with the biopsy

I snore like a freaking freight train thanks to this surgery

The obdurator doesn't fit right and will have to be revised.

The obdurator doesn't fit right because Dr. Crane only had to take out one tooth instead of two (hooray) and the tumor wasn't *quite* as large as we'd feared (hooray) and all that.

I am exhausted, honestly. I need some good sleep and maybe some nice boring scrambled eggs for brekkers. I'll catch you guys up in between doses of meds.

Very tired, but okay.

And on serious pain meds. But all is well, and I will be fine.

All my bags are packed; I'm ready to go.

My hospital bag is packed with two pairs of jammies, three pairs of socks, three pairs of underwear (why "pairs of underwear" when it's just one?), and ALL the technology.

Half of the Fearsome Foursome, my friends Ed and his Lovely Wife, came over with an iPod Touch with text-to-speech capability and something called a Boogie Board. The Boogie Board is like an electronic magic slate: you can write on it (or the cats can leave paw prints on it; it's surprisingly sensitive) and then press a button and have everything disappear.

The iPod is a nice thing. The preloaded voice is plummy and British and says things like, "If you ask me how I feel one more time, I will punch you in the balls."

The Other Jo sent me a Kindle. She's just as big a nerd--or maybe bigger, in different fields--as I am, so this was an incredibly thoughtful gift. I asked her why she didn't just provide me with a bleach kit for my works, as everything I've ever been meaning to get around to reading is provided free on Amazon for the Kindle. I have the distinct feeling that I'm going to end up reading stuff like "Northanger Abbey" on the Kindle when I ought to be working. Dammit, Jo!

I am leaving the Awesome Blankie of Win here, for two reasons: first, the boys would be very upset if I took away their new snuggle spot. Second, I want it here and MRSA-free when I come back, so I can lie on the couch in it and watch "Dirty Dancing" (the very first movie in my Netflix queue) the minute I get home.

And, finally, Brother In Beer came up this weekend and took me out for barbecue. It was lovely. We had no beer with our barbecue, but plenty of black eyed peas (almost as good as the ones he makes) and lots of laughing and kidding around.

It's been a good weekend. Except, you know, for when work called me today and BossMan asked if I wanted to work this week. "Dude," I said, "You know I'm going in for tests tomorrow and surgery on Wednesday, right?"

"Well," he replied, "I figured we could give you a couple hours off tomorrow for testing. We're kind of short-staffed."

I put this down to his general flitterygibbertness in the face of everybody getting pregnant and having CAN-SUHHHH.

Despite all the worries that go along with having general anesthesia and being intubated and having half your mouth cut away, I'm not scared. Strangely. Maybe it's because I know that codes in the OR are astoundingly rare, and that the residents in the room do everything they can to make sure you're still alive at the end of the case. Maybe it's because I know and trust everybody who'll be taking care of me. (Staying alone in a hospital room does sort of worry me, but Friend Pens the Lotion Slut assures me that she'll stay if need be.)

Maybe it's just that I'm so damned glad to get this monkey on the street, you know? The last several weeks have been a weird combination of rollercoaster and limbo. I can finally say that Yes, I Am A Patient, and I Am Doing Something About This, even if that Something involves lying supine on an operating table, getting gassed.

At the same time, I'm just as superstitious as any other nurse (and we're a superstitious lot). I worry about saying things like "easy" and "complete cure" and The Dreaded Q Word. If I write a see-you-in-a-while post for my blog (after six!!! years!), does that mean that The While will be Judgement Day? Am I, by talking about it, going to die on the table?

Fate and God and The Universe would not let me die without having appropriate last words. Of that I am sure. Therefore, I leave you with these words prior to surgery on Wednesday, secure in the knowledge that they won't be my last:

BIG. HAIRY. BUTTHOLES.

And she'll have fun, fun, fun till the doctor takes her palate away....

Gracious, there's a lot to do before you go into surgery. I mean, *really*.

I've been approved (thank you kindly, Mister Blue Cross) for two whole days in the hospital. That means that I have to pack two whole days' worth of pajammies and decent soap and so on, and make arrangements for the Zoats to go to PuppyCamp next door.

I've got my medical POA and living will and donation instructions all set up, just in case. I've paid the bills and got a list of things to do before Wednesday. I have enough cat food to feed an army. Everything is pretty much done, except the laundry that's in the dryer.

Think, think, think. Must think of things I might not be thinking of. Sheesh.

I have an Official Blankie Of Awesome And Win!

Friend Pens the Lotion Slut was so enamored of Inkgrrrl's phrase "blankie of awesome and win" that she sent me "Jo's Official Blankie of Awesome And WIN" today in the mail.

It is the softest blankie ever.

I will never get it out from under the kittaynz.

Also, I have NEGATIVE LYMPH NODES and a NEGATIVE PET SCAN and a NEGATIVE MRI and oh, by the way, that PET shows a SMALLER LUMP THAN WE'D EXPECTED.

So, all in all, the day's been a good one.

She says calmly, as fireworks shoot off and bands blare and drums pound and people dance in the street.

The people who love me are all so nice, I wonder if maybe I might be nice, too.

Shock and awe in the neuro critical care unit.

I...

I...

I can't believe it.

I'm flabbergasted. Gobsmacked. Flubbered.

Doctor Moron--remember him? The one who sent us a rotator cuff tear because he thought it was a stroke, and missed that big neck fracture?--actually got a diagnosis right. And it was actually a real, true, honest-to-Frog stroke.

And he treated it correctly. In a timely fashion.

(Having spoken to the folks at the emergency department in question, I'm inclined to believe it was the resident and nurses who saved the day on this one. But then, that's always my inclination.)

Meemaw noticed over breakfast that she was drooling out one side of her mouth, and that the peripheral vision out of her right eye was suddenly less-than-ideal. Meemaw, being one of those folks who actually reads the emergency cards in the airplane seat pockets and watches PSA's, immediately suspected a stroke.

So she glanced at the clock--this part is vitally important--and called 911 (also vitally important).

See, when you have an occlusive stroke, the main determinant of whether you get clot-busting drugs is your Last Known Well time (LKW). Most hospitals have a protocol that says that clot-busters can't be given to anybody whose LKW is more than three hours past. (We have a slightly looser protocol, due to some research that Dr. Heron and Dr. Unpronounceable are doing, but still. It's a tight timeframe.) We can occasionally go in and yank a clot out after that window for clot-busters closes, but mostly we just do what we can to salvage your brain with anticoagulants.

The paramedics, also being the sorts of people who read airplane emergency cards, took her to Holy Kamole after giving her some aspirin.

Where they did everything *right*.

Now, let me say one thing here: If I ever accidentally saw my leg off with a steak knife, or have a heart attack, or get dropped into a vat of chocolate-chip cookie dough, or need an elbow transplant, there is nowhere I'd rather be than Holy Kamole. What they know, they know really, really well, and their patients get better. It's just that they're not all brains, all the time, like we are at Sunnydale. Anything above the collarbone is a little vague, just like anything *below* that landmark is a little vague for me. Every hospital has some specialty. HK's just isn't that lump of pinkish goo between your ears.

Anyway, Meemaw got her drip-and-ship--an infusion of clot-busting medication and transfer to my little NCCU--and was doing better within an hour of landing in my bed.

This one is going to have a happy ending. An independent 80-year-old lady with a busy life of volunteering and working part-time will be able to go back to that life no later than this weekend. Her grandkids will be happy that she's still around. Her cat won't have to have a new owner. She won't have to end up in a long-term care facility somewhere.

She's getting better even as we speak. And that's kind of nice.

Y'know, I don't really like Valium all that much.

The PET, MRI, and lymph node biopsy are done ducklings.

I don't have any results yet; probably won't until tomorrow afternoon at the earliest, maybe Wednesday. The lymph node *looked* good, but we shall see.

I fell asleep in the MRI. Laid back, crossed my hands over my belly, shut my eyes, put my knees up on the wedge, and promptly fell asleep. The fact that I was listening to Diane Rhem on a podcast probably had something to do with that. Also, the fact that I feel safe and cozy in a small space, rather than claustrophobic. Nappy times!

Ironically, after the podcast, Charlotte Gainsbourg's album "IRM" came on. It went very nicely with the whanga-whanga-bonk-bonk-wobbawobbawobba of the magnet (she wrote it after her own MRI for an unruptured aneurysm).

I did *not* fall asleep during the biopsy. I had been told that they were uncomfortable, but being told doesn't prepare you for actual pain. It's a very fine needle they use, attached to suction, so it doesn't hurt going in.....but holy Christ, once it's in your lymph node? Sheeeit.

Again, it's like being shot in slow motion with a medium-sized bullet. The first stick wasn't bad. The second had me doing the familliar gritted-teeth, white-knuckled, every-muscle-tense dance as I said *urk* very softly. I was too afraid to do more, as the lymph node in question is just above and in front of the place my carotid artery splits into internal and external branches.

Wiggling probably would've been...bad. It's amazing, by the way, how sensitive lymph nodes are. Right now there is a small gnome pounding away at a couple of nerves in my jaw and sanding a nerve in my neck with a belt-sander, and that biopsy was at 11 this morning.

The PET scan was a lesson in anticlimax. First I got a stick to check my blood sugar (87), then I got a stick to put the nifty radioactive sugar into my vein, and then I got to drink a pint of Redi-CAT barium contrast along with my five milligrams of Valium. (The Redi-CAT? Was vanilla, and not too bad. Ask for it over the berry or banana flavor. It's pretty tasty.)

Then I went to sleep for 90 minutes. Turns out the Valium, in addition to keeping the more-claustrophobic among us calm, also helps keep the thermogenic fat in your back and neck from overreacting to stress and screwing up the PET.

Then I got up, went out for Mexican with Nurse Ames, and came home. I feel both as though I've lifted a whole lot of weights for a very long time, and as though I haven't slept in two days. Valium is not a fun trip; I guess things must've really been bad in the 1950's for it to get so popular.

The most surprising thing about the entire day was how *nice* everybody was. I knew some of the folks by name, some by sight, and most of them not at all--but it was as though they were all very happy to see me and had been waiting all month for the opportunity. Plus, the gowns they have in the imaging center beat the ones in the hospital all hollow. I'm thinking of going back and stealing a couple. They even offered me a pair of quite schwanky seersucker shorts to wear in the MRI. Since the size "small" gown came down halfway to my ankles, I didn't feel that they were necessary. (Query: how on earth do they size those gowns, that a 16 is a small?)

Well, it's all done. With what the good doctor Crane has now, we should be able to make a plan--at least a tentative one.

*whew*

Ten seconds of heartfelt profanity.

Diana writes Badinage, a nifty blog about all things new-nurse and not-nursey.

I stopped over there this morning to check out her latest stuff, and found this: she'd written a bit about how I'm blogging this whole CAN-SUHHH thing, and had been inspired to check her own mouth.

And she found a lump. Under her tongue. And she's getting a CT. Or maybe has already had one; it's been a few days since she saw her doc.

Whereupon I had five seconds of really heartfelt cussing, then thought about it, and had five more.

Send vibes out to Diana, if you will.

A Portrait of the Author.

Head Nurse Jo, in all her glory.

And oh crap I forgot:

Y'all can talk about anything you like in the comments. I was enjoying the socialized medicine discussion. Please do continue if you feel the urge. Don't let the fact that this is a single- or dual- focus blog stop you, 'k? Thanks.

So today Ed & Anne & Adam & I all went to the antique store...

...and I wish I could get Ed's video to download, because it is classic.

Back in the day, when I still had a husband, that husband had a toy. It was a clown.

It was not just any clown, though.

It was a vaguely threatening-looking, unhappy, weeble-y NORWEGIAN clown.

With a feather in his cap.

I had completely forgotten the existence of this horror (which I used to keep replacing in the storage room, because I couldn't bear the thought of it oh my God it's coming after me in the night holy shit) until today, when we walked into El Cutseo Antiquey Shoppe....

...and there it was. By the door, in the first display case. A little faded, but recognizable. Because, really, who else in Hometon would have a Nightmare Norwegian Clown?

We remarked on it, and Adam even played with it a bit, making it weeble back and forth, even though I reminded him that it would come after him in the night.

It was....memorable.

Cancer McCancersons post: This is NUTS.

I've been all about the numbers today:

Dollar amount I spent at Target today, buying things to last the next six weeks or so:

Almost three hundred.

Number of people who get polymorphous adenocarcinoma every year (generously):

400.

Number of people hit by lightning every year:

700.

Number of people killed by hippopotamuses/i every year:

More than 11,000, or about 33 a day.

Amount I've spent on this cancer so far that hasn't been covered by insurance:

Roughly six grand. (Thank God for a high credit limit. Please don't drop it, Citibank. I'll pay. I swear.) (And how the hell do you do this if you don't have insurance? Starve? It's not like you can get free prosthodontics at County General. This is crazy.) (I mean, I know a universal health care system can't cover everything, but for cryin' out loud: just doing the preliminary dental Xrays on this bastard cost me well over $300. I got one single stinking pano and a couple of side shots.) (That's scary. I really hope I don't lose my health insurance now. I would never get insured again, even with the new rules covering preexisting conditions. They'd find something.)

Number of people over the age of 65 hospitalized for a non-fatal fall in 2006 (US only):

400,000+.

Number of hip fractures resulting from falls in 2006:

More than a thousand A DAY.

Current population of the US:

307,000,000 (roughly).

Number of people who will get any sort of salivary gland cancer this year:

36,000 (roughly).

Number of horizontally-impacted wisdom teeth I will have to have removed during surgery:

One.

Amount of distress it caused my prosthodontist to discover that I was not, as he had thought, perfect:

Untold.

Number of pounds I've put on--on purpose--since diagnosis:

15.

Number of pounds I can expect to lose if I have radiation treatment:

40-60.

Number of inches a G-tube would have to be to go into my belleh and stay:

The minimum, about eight. Maybe nine.

Number of radiological tests I will get on Monday:

Two.

Number of lymph nodes they will biopsy then:

One. I hope.

Number of positive results I hope I get:

ZERO.

When a stroke's not a stroke.

When is a stroke not a stroke?

Well, when it's...not a stroke, Eisenstein.

One of the interesting things about the human brain and body is that, when you've had something go very wrong indeed in your head, that wrong thing can be reactivated by things going wrong in your body. It can even be made worse.

Let's take a typical case: your average Little Old Lady In No Acute Distress (LOLNAD) who had a stroke, say, ten years ago, that left her with a little residual left-sided weakness. Other than having to use a cane to keep from tipping over unexpectedly, she's dandy. She lives in one of those poncy-schwantzy apartments with a day nurse who comes in to help give her meds and an aide that stays overnight.

One morning, the aide notices that in addition to being more weak on the left side, Granny LOL is confused and can't talk very well. She's having difficulty following commands and seems really sleepy and irritable. The aide, being a bright person, calls 911.

The ambulance arrives and whisks Granny LOL to the nearest emergency department, where she has a thorough stroke workup: chemistries, urinalysis, a CT scan of her head to rule out a bleed, and a general exam. Everything's negative....except the urine. It's hot. She's got a UTI.

So she's given a dose of antibiotics and sent over to me at Sunnydale, where she gets an MRI to look for signs of new occlusive stroke. She also gets all the other tests and chicken-waving that are standard for our patients. At the end of the day, we discover...

...No stroke. Thank God. Just a UTI that's been allowed to grow (because most people can brew one without symptoms, and older folks are hit hard by them).

Why does this happen? Honestly, I don't know the technical explanation. I do know that in probably half the female patients I get who are over the age of 70, and about a third of the male patients that age, there's a urinary tract infection that's present. It's recognized that even a supposedly "asymptomatic" UTI can cause the sudden onset of confusion or a worsening of dementia. That same infection can cause what we call a reactivation of old stroke symptoms as well--sometimes to the point that the person's worse off than when they had the original stroke.

Moral of the story: If you have an elderly patient (or, for that matter, any patient) who suddenly manifests a worsening level of consciousness, do a UA while you're doing all the other stuff to rule out nastier things. It's a fair chance your person will have a positive dipstick, and antibiotics will vastly improve things.

Lists, lists, lists....

The Schaft asked a very good question down below, in the comments of the "Minions" post: Why on earth would I be asking for feedback on a tips jar now, rather than looking around at my local community and seeing what needs to be done there?

It's a question that deserves an answer. Here's the answer:

I donate my time, money, and rather a lot of food to local community groups and food banks. I give X amount every month to stinking pinko liberal commie causes, add extra to my gas bill to help keep the heat on for other people, add extra to my electricity bill ditto air conditioning, and give my time and expertise (such as it is) to places like my beloved Planned Parenthood. I do all this already.

What struck me when I was diagnosed with this cancer is this: you can get help for all the shit you need help with, except for what you need help with the most. I've been all over the Innerwebs, and the resources for people with orphan diseases--especially ones that are falsely linked in the public's mind with "lifestyle choices"--are slim to none. Try being a person with no risk factors who has a disease that, at best, 339 other people will be diagnosed with in this country this year. It's a freakin' desert.

If I were in danger of freezing, baking, starving, or having an abnormal Pap test, I could find help. But now? When I have questions about how radiation might affect my thyroid, or the surgery will affect my voice, or how an obdurator might affect my sex life (not that I have one now, but hope springs eternal)......nothing.

That's what's different. That's why I suddenly care about people who are diagnosed with such wierd, off-the-wall shit that, if they're not in my position (working for a research-driven institution; having a surgeon who's one of the few who's seen hundreds of these things), are screwed.

Not being able to find somebody like me sucks. I want there to be somebody like me out there the next time somebody like me goes looking.

*** *** *** *** ***

Having cancer is rather more complicated than you'd think at first. Thanks to Beloved Friend Pens, I have now--drum roll--ordered a TV set with a built-in DVD player, and have signed up for a month's worth of Netflix.

I was such a newbie that I typed it in as "netflicks" on my browser.

I've also, since I won't be able to talk, ordered a new phone with a better keyboard and unlimited texting.

And I've got a list of the things I need to buy a month's worth of: dog food, cat food, toilet paper, detergents of various sorts, painkillers, saline solution for contacts, you name it.

*** *** *** *** ***

I've got to make my own picture board. The ones at the hospital won't cut it: they have symbols for "pain medicine" but not a symbol for "bring me the good drugs, dammit!" or "get that asshole out of my room."

*** *** *** *** ***

Met with the speech therapy person and the physical terrorist today. They're both going to be looking for me after surgery. I also have nurses lined up and people reserving a room for me.

Too much to do. Too much time to do it in; not enough energy for any of it.

Prostodontist: new sort of dinosaur, or dude with his hands in my mouth?

Let me tell you, Peeps: If this little journal of schmancery adventures helps even one person, it'll be... ... ...exactly the same pain in the ass it is now, but it will have helped one person. I guess.

So: today I saw the DDS who will be making the prosthetic for my mouth. Or, rather, prosthetics, as there will be three: one for the immediate post-surgery period, one that I can wear about a month after that, and a third to be worn....at some point in the future, and forever (or as long as I want).

I asked; they do not come in different colors. Also, I won't be taking it out much. So sad: no rainbow-stripey palate with a unicorn shitting a rainbow on it.

Anyway: the widget will be a hard plastic thing that goes across the part of my hard palate that's missing. That's to start: it'll still be possible for me to snort stuff out my nose in the beginning, since they can't put anything over the soft palate tissue until it heals. Therefore, I'll have to have speech therapy to teach me to swallow safely and to speak intelligibly again.

Yeah. That took me aback a bit.

In addition, I'll have to do some very high-tech exercises starting immediately after surgery, whereby I shove as many stacked-up tongue depressors as I can into my mouth. Since the surgeons will be cutting my jaw hinge muscles, this'll keep the healing muscle from stiffening up. I found out--and you may make what you will of this--that I have a record-settingly large mouth opening: 55 millimeters. The average is ten millimeters smaller. I can put 32 stacked-up tongue depressors into my mouth at once.

Bask in awe. I'll give you a minute.

The second and third palatal obdurators will have what's called a "speech bulb" on them. This will apparently help me deal with the loss of a chunk of hard palate, but it's going to take some time to sculpt them properly so I don't sound like something out of a cartoon. That's fine; it's down the road a bit. I just won't answer the phone 'til then.

Tomorrow I'll work again, huzzah! You know it's getting tiresome when twelve hours with the differently-brained looks like a vacation.

I have a question for you minions.

Since I came out with the news that I HAVE CANCER (echo chamber effect), I've gotten a hopload more followers and readers.

It strikes me that little to no good is coming out of that except some ego-stroking, which I certainly don't need.

It also has come to my attention that I've gotten a number of emails (more than ten) which have encouraged me to set up a tip jar for treatment expenses and so on.

Now: here's the deal:

As of right now, I don't need any extra cash. I'm getting by fine. I have people who owe me favors, and family who's willing to give me moolah if I need it. There are, however, people who are not as lucky as me.

Given that I have a cancer that is listed on the National Database of Orphan Diseases, it interests me that I might be able to make a difference for somebody with an orphan disease.

However, putting up a tip jar seems kinda... ... ...tacky.

What do you guys think? You're the ones who'd be donating money, either on an ongoing basis, or just once. You're the ones who'd have to dig into a pocket. Would you be willing to help support a really freaking obscure cause?

More importantly, would you be willing to trust me to pick a disease rare enough, and weird enough, to justify the efforts of HN readers?

Let me know what you think in the comments. I'm truly interested, though this may not get underway for a bit.

Thanks.

Jo

I just learned what's scarier than cancer.

(The scene: a quiet bedroom somewhere in the middle of Texas on a cool fall day. A gentle breeze moves the curtains at the windows as Our Heroine naps peacefully under the covers...)

Our Heroine: Mmmmmmmzzzzzzzwarmfuzzykittybellies.

(rolls over, wakes up slightly)

Our Heroine: Mmmmmkitties. Warm. Kitties. Wait.

(blinks)

(Our Heroine realizes that there is indeed one Warm Fuzzy Kitty atop the bed. The other is under the covers. With her. With claws.)

(cue Oboes of Doom)

Our Heroine: (absolute frozen silence and stillness. No blinking.)

Cat #1, under covers: (moves slightly)

Cat #2, atop covers: (looks interested)

Our Heroine: (absolute frozen silence and stillness)

(Oboes of Doom swell, to be joined by Strings Of Misery and Disaster)

Our Heroine: (watches as life flashes before eyes)

Cat #2, atop covers: (looks very interested indeed)

Cat #1, under covers: (sticks head out, looks innocent)

Our Heroine: *sigh of relief*

...and cut.

Gneh. (cancery goodness!)

That's my new word. Gneh. The "g" is not silent.

Gneh.

Sorry for the further cancery postingage. I just can't seem to get my head around work. Specifically, I can't understand why a person who is manifestly unable to maintain their own airway would be moved off a ventilator on a critical-care unit and into a floor bed, only to decompensate within about twenty minutes and have to be reintubated and returned to the CCU.

Sometimes cancer is easier than dealing with people. Especially doctor-people. Especially doctor-people who are not experts in patients who can't breathe and who therefore choose to ignore the advice of those doctors who specialize in the Not-Breathing Patient.

Anyway, I got an appointment with Obdurator-Dude today. For those of you who slept through the first half of class, an obdurator is a plastic widget that closes an open palate. Given that I'm going to lose a nice chunk of my palate during surgery, I'll kind of need an obdurator so I don't have macaroni and cheese coming out my nose every time I speak.

Lovely.

Apparently these things are made of solid 26-karat Unobtainium with a Marvellium augment. The up-front cost of the damned thing--and this is actually about a third of the real cost--is going to be more than a thousand smackers. Don't leave your obdurator on the cafeteria tray, kiddo!

Don't let this be you!

Plus, the one guy in the state with whom my surgeon likes to do business is an inconveniently long way away, in an inconvenient part of Yeehawville. Oh, well. They're seeing me tomorrow for X-rays and molds (eugh gneh gneh herk bleh) and bleeding and so on. If this dude is not attired in green lederhosen, sitting at a workbench, carefully sculpting each prosthetic by hand as his eyes twinkle over his half-moon glasses and bluebirds twitter around him, I am going to be really fucking disappointed. You'd think for three grand you'd get a couple of bluebirds.

I have also ordered several Books On Cancer. This is an important step in the Holy Shit I Guess I Really Do Have Cancer process, as I generally only read about things in real honest to Frog books that I want to know more about. The Interwebs are fine and all, but highlighters don't work on my LCD screen. All these books have to do with emotional wellness and nutrition, two subjects about which I do not know nearly enough. Plus, I've got a buddy doing research on those things for me, so I think I'm set there.

Holy shit. I guess I really do have cancer.

And with that, I'm going to go have a sandwich.

Cleanin' out the shed like a motherf*ckin' ADULT!

It's polar opposite day!

No, these don't have anything to do with cleaning out the shed. Why do you ask?

Things nobody tells you about having cancer...

Last cancerycancercancersons post for a while, I swear; I just can't get my head around nursey stuff at quarter-to-oh-shit in the morning today.

1. Nobody tells you about Sad Face, Oh-Isn't-She-Brave Face, and their corollaries.

Friend Lara and I were corresponding about this the other day: every person you tell you have cancer puts on a Face. It could be Sad Face, or the OISB Face, but there's a Face that goes with the diagnosis. I suppose it's a natural reaction; hell, if I had told me I had cancer, I would've looked pretty sad at the news. Still, you start steeling yourself for it.

Perhaps the best facial expression I've seen came from Ginny, the Highly Inappropriate Chaplain. She peered down at me from her tremendous height and squinted one eye and screwed up her mouth, and I started laughing so hard I could barely breathe.

2. The words, "You're so brave" and "You're so tough" get really old.

I know it's a compliment, and I know I should be thankful....but you know what? I'm not really all that brave. This is what it is, and I'm just putting one foot in front of the other, living in a state of combined denial and narration. Every test I have I'm scared to the teeth. I wake up in the middle of the night feeling a tightness in my neck and wonder if that's yet another lymph node. There is a little, quiet voice in the back of my mind that reminds me that I just might die if I'm incredibly unlucky.

I am not brave. You do what you have to do in this situation. You can only be po-mouthed about it for so long; then you realize that the dishes--even if you have cancer--are not going to do themselves, so you do them.

3. It does not go away.

Even for five minutes. I managed to forget, day before yesterday for a whole thirty seconds, that I have cancer. That's the best I've done in three weeks.

4. Discipline can go out the window, if you let it. This is bad.

Bottle of champagne and cheap-ass carnitas from the tamale cart for dinner? Sign me up! That's one reason I'm having a combined mental and physical health day off today. And believe me when I tell you that I woke up this morning and realized that yes, I might have cancer, but that doesn't give me license to treat my body like shit in the guise of making myself feel better.

It's understandable how some people go off the rails. Still, you can't spend every minute from diagnosis to cure running amok; never mind the ramifications for treatment, who wants to live hung over *and* with cancer? I'll take just the cancer, please, without the side of herk bleh.

5. You never realize how many friends you have until....

Friend Lara said, "Is it just me, or are you feeling huge amounts of love too?"

Yeah, I am. It's humbling as hell, you know? If I were to stand outside myself, I'm not sure I would like me very much--but then, I know all the nasty little linty, dark corners of my own soul. Apparently I hide them from other people well enough, or overcompensate for them well enough, that outsiders think I'm okay.

And the quality of your friends becomes apparent, too. Nurse Ames has been fantastic through all of this, as have Stoya and the Boss Man and Kiva and all the rest of the people I work with. Not everybody can drive me to and from appointments like Ames does; Stoya, for instance, is not a warm-fuzzy type. She still sends me texts, though, that say things like "How's yer trap?" and "Dead yet?" You need both kinds of friends when you're going through this, and I'm lucky to have them.

6. You're still an asshole, even if I have cancer.

If I couldn't find it within me to like you before, I am unlikely to change my opinion of you now that I have this diagnosis. See "Sanchez, Rick" and "Armey, Dick" for details.

7. I'm still an asshole, even if I have cancer.

And you know what? It's okay to call me on it. I've said before that being sick tends to make people more of what they are, down deep; sometimes, that means you're a bigger asshole than you ever were well. You can get mad at me, as Lara says; it's not going to break me or make me sicker. It's okay to treat me like a normal person. I am not Ma's little china lady on the shelf Pa carved back in the Big Woods.

And that is all for now. I'm going to go repair the damage to the kitchen that the Parkour Kitties did last night--Frog Himself only knows what they were chasing, but it must've been very exciting. Then yardwork and laundry and reading something interesting and shopping for a small television (no, the world's not ending) with DVD player and maybe a shower later.

I'm going to have a nice, uncancery day today.