Friday, December 31, 2010

Happy New Year! I'm staying right here.

Well. Two-thousand-ten.

I ended the year without having had hallucinations of lumps of cookie dough flying toward me and exploding (stroke symptoms), the world greying out and recovering (stroke symptoms), being unable to read out loud (stroke symptoms), or being unable to recognize voices over the phone (stroke symptoms).

I also ended the year without a blown aneurysm, peritonitis, chemotherapy or radiation or a bone marrow transplant, systemic herpes simplex, a bike wreck, a traumatic brain injury, or a bad sunburn.

It's been a damn good year. Cancer? Schmancer. I've got dust bunnies that are a bigger deal than *that* turned out to be.

Everybody's pretty much okay. The family's all in one piece, nobody needed help burying any bodies, and The Man of God and His Lovely Wife are (hang on, let me check).......still at home, so she's not in labor. Yet. (That baby had better shake a tailfeather before Mama loses her mind.) Max is still galumphing furrily around the back yard, the boys are still Concentrated Evil in cat-shaped pajamas, the roof stayed on the house this year.

Tonight I'm going to watch something on Netflix instant, have a beer, and go to bed early. Tomorrow I'll lay out the garden for next year and plan what to plant (things start shipping in February when you live this far south). Next week I'm back on my regular schedule at work, thank Frogs, and later on I've got umpteen gazillion classes to take to train for new equipment and procedures that Sunnyvale's implementing.

You all have a lovely New Year. If you're short black-eyed peas, shoot me a line. I have about a gallon of 'em.

Friday, December 24, 2010

Hallelujah, Noel...the Christmas we get, we deserve.

Tashi and Wash gave back to folks who had even less than they do today.

Lara and her boy and The Boomerang (their new pup! Lara's new antidepressant on legs!) had a quiet Christmas Eve at home.

Tashi and Wash and Lara and her boy are happy.

And I am happy.

I had what was the best--and here I do not exaggerate, for once--the best Christmas Eve ever. I worked a good day, kept busy, and got a nice balance between occlusive and hemorrhagic strokes. Ames and I got to work together like we did when we were just starting out, a year ago, and it was awfully nice to ease into that groove without having to think about it.

"I miss this," Ames said as we finished cleaning up a room, "this stuff we used to do together."

"Hey...I thought you said you didn't miss nights and cleaning poop and changing beds!"

"I missed *this*" Ames said.

I missed it too.

Then, tonight, the Fearsome Foursome (Adam and Rob and Ed and Anne) came over for Danish rice and almond pudding with cherry sauce (ris alamande) and gifts. Rob and Adam got me two lovely pieces, seemingly unrelated until you looked at them and realized they were both the map of the world separated by a few hundred years. Ed brought his technology and Anne her graciousness and hilarious laugh, and we stayed up way, way too late watching Hubble The Pup chase the cats.

I am alive. I'm well. Through all of this Cancer Shit, I've never really been sick, and I won't be. I have a complete cure, as they say--and I'm beginning to be able to try to believe that.

I have been so incredibly lucky. From start to finish--well, from start to *here*, at least--I've been surrounded by people who aren't afraid of what's happened, or what might come. I've been taken care of by folks like Carolita, who are able to put aside their fondness for me and do what needs to get done. I've been held up and bolstered and kicked in the ass by people like Ames, who was willing to get up at oh-dear-thirty in the morning and spend her one day off in a week carting me from test to test, uncomplaining. I've been encouraged and enlightened by Sister Pens, who put aside her own worries for weeks to take care of me.

Last year, I posted a picture of the foot of snow we got on Christmas Eve. I thought then that that was the most perfect Christmas I could ever have: snow, and a day off, and possibilities opening up like a fan in front of me.

This year it's doing nothing but raining. The weather outside is truly frightful, but I don't mind. The possibilities I saw last year have been doubled, tripled, quadrupled by coming face to face with Schmancer and being able to say "Fuck you, weird cells" and keep going. I have new friends and new goals and a new understanding of my old friends, and again I count myself as the luckiest, most blessed person I know.

The Christmas we get, we deserve. I don't know what I did to deserve this, but I am so grateful.

Merry Christmas, everybody. If your year is half as good as mine has been, you'll be in great shape.

Thursday, December 23, 2010

An Open Letter To Blue Cross/Blue Shield of Texas

Dear BCBS-TX Federal Employees Insurance Program,

You suck.

You suck like my vacuum cleaner sucks after I put a new bag into it. You suck like Austin traffic on a hot July afternoon with a thunderstorm on the way. You suck so much that nothing, not even light, can escape the event horizon of your awful fucking suckitude.

You told Rosie up at the Magic Prosthetist Elf's that you wouldn't cover but about a grand of the cost of my oral prosthetic. That's less, BCBS-TX, than Medicare covers on the same sort of prosthetic. You are actually reimbursing *less than Medicare* for something that allows me to eat, talk, and breathe properly.

Oh, but I'm getting ahead of myself. Let me explain what an oral prosthetic is, why I need it, and thus, why you suck so much.

See, I had cancer. I had a weird rare form of cancer that necessitated removal of half my hard palate and all of my soft palate. Open your mouth, BCBS-TX, and look at the back of your throat. That, on me? Is gone. It was that or lose half my face when the cancer that I had came back again and again because it hadn't been cleared out properly the first time.

Without a soft palate, I cannot speak intelligibly. I can't swallow very well, and spit tends to drip out of my nose if I bend over. Of the three problems, speech is the biggest one, and the one that the prosthetic I use helps most with. Basically, without the prosthetic, I would be unable to work, unable to function in public, and unable to communicate using devices like a telephone. I would be as handicapped as a person with only one leg or one arm. My disability would be huge.

There are two prosthodontists in the state who would take me on. Two. Both of them are non-contract (ie, out of network) with you. The guy I'm seeing now is the only guy around who's willing to do what it takes to get me speaking well. Yet you, BCBS-TX, think that I should drive four hours to some dude at MD Anderson in Houston who, by his own admission, is not as competent at this sort of extreme prosthodonty as my Happy Elf Doc. There is a reason that my surgeon sent me to Happy Elf Doc rather than somebody who also works for the University of Texas system, guys: it's because Happy Elf Doc is much, much better.

Anyway, I've got my first prosthetic from this guy, and because you only reimbursed a grand of its cost, he took only cost from me. The thing cost six grand for him to make, and I paid him five grand yesterday. He gave it to me for cost. He did not charge me for the fourteen hours of office visits I've already racked up with him. That's fourteen hours of face-to-face time with a specialist--time that he could've used to see two less complex patients.

BCBS-TX, I will need two more prosthetics before things are done here. I'll also need various adjustments and remoldings throughout the life of the prosthetic. If something goes terribly wrong and I break the thing or run over it with the above-mentioned ultra-strong vacuum, I'll need a replacement. Each of the two prosthetics I know I'll need will cost me six grand, just as this one cost six grand.

Simply put, BCBS-TX, my prosthetics will cost more than the total out-of-pocket-cost of my surgery, hospitalization, and preliminary MRI/CT/PET scan. And you want me to bear that cost without whining.

Well, guys, you're in for a very, very long year. See, it seems to me that if somebody had a limb amputation and the only folks who could deal with the prosthetic for that amputation were in Outer Backobeyondistan, you'd allow for that prosthetist and his minions to be in-network, just that once. You would reimburse fair market value for that prosthetist's labor, especially if it were considered a really unusual case. You'd be, in other words, something other than the black-hearted, asinine, no-explanation-of-denial dipwads you're currently being.

My mouth is bigger than it was before surgery, y'all. You may be BCBS-TX, but I am a pissed off woman who has already had the shit scared out of her. I'm gonna bug you until you pay up.

In fact, I'll bug you so much that you'll pile cash on the table in front of me until I smile, then give me more just to go away. You've thrown down this gauntlet, BCBS, and I am *pissed*.


Wednesday, December 22, 2010

I have to brag for just a second:

Acorn squash, stuffed with its own flesh and sundried tomato, pecan and onion mix... ... ...

Wild rice risotto... ... ...

Roasted cauliflower with garam masala and a peanut sauce... ... ...

Carrot-ginger soup with coconut milk... ... ...

Chocolate cake.

Yes, it's all vegan. And yes, it's Attila's Christmas dinner.

I made risalamande (risotto-style) while eating baguette with triple-cream brie, mustard-seed salami, cornichon, and provencal olives for dinner.

Just in case you didn't notice?

I can cook.

Form a line to the left. (Jerks thumb thataway)

Sunday, December 19, 2010

Sunday Night Sing-Along:

The only truth I know is you.

Tuesday, December 14, 2010


Thanks to the latest episode of "Fresh Air", I got to thinking about being a medical person and talking about your medical problems with patients, if those problems relate to those patients.

I didn't tell any patients that I had cancer. There was never really a reason. I mean, I guess if I'd had a patient who'd had surgery for a half-centimeter polymorphous low-grade adenocarcinoma on her right palate with my surgeon, I might've asked her about it, but that chance never presented itself.

It's not like the respiratory therapist I work with who, while being a weird guy, is also a very *nice* guy, and who assures the stroke patients that they, too, will survive and thrive after their strokes, just as he has. You just don't bring up "Oh, hey, by the way, I've got the C" to patients unless there's a reason.

Now I have the reason, more often than I ever expected. I have patients that haven't seen a dentist in a decade, patients with weird lumps and bumps on the floor of the mouth that they haven't had checked out, and patients who simply ask outright why the hell I talk so funny. And I tell 'em: I had cancer and had my palate removed, and the prosthetic makes me talk funny, but I'm cancer-free now.

Sometimes, when I'm called to start an IV on a patient that has JP or Penrose drains coming out of her neck, I ask, "Cancer?" When the patient nods, then presses the pain-pump button, I stick my hand out and say, "Me, too."

We shake hands, and I nod once, and then I stick them.

What do they see? Probably nothing they'll remember, given the pain meds and the anesthesia, but:

Cancer is like a swimming pool. When you get the diagnosis, you're shoved suddenly up the ladder onto the high-dive. You're essentially alone, staring down into a pool full of people. (This is not to diminish the efforts of doctors and surgeons and nurses; it's just...well, you're on your own. It's you, and this thing that's trying to kill you, and that's really it at three a.m.) Some people have really nice floaties, and some people tread water, and you can see that some people are exhausted.

And you have no chance but to jump.

When you look at the water, you notice that there are people who are sitting around the edges of the pool. Some of those folks have their feet in the water. Others are on nice comfy lounge chairs, with novels and fruity drinks. They're completely dry. Still others are coming up the ladders or up the stairs, soaking wet, and looking for a towel.

You promise yourself as you jump that you will get a lounge chair and a cabana boy and a fruity drink. You promise yourself, as you're falling, that eventually you'll be out of the pool and dry, and that you'll be able to shout to the people who are still in the pool, without having to get wet again. You swear up and down that this'll happen somehow, even if you've never taken a swimming lesson in your life. Then you hit the water, and it's all overwhelming.

If I'm doing my job right, the people I talk to will see me standing on the edge of the pool. I'm still soaking wet, and I haven't found a towel. I'm yelling at them, telling them that the water will hold them up if they just relax and float. (Floating, letting the water hold you up, is not the same as not fighting--it's just using your strength in a wiser way.) I'm not dry yet, and there isn't a lounge chair free yet, but I'm on the edge of the pool.

Saturday, December 11, 2010

This wasn't totally unexpected.

My mouth is still healing. This shouldn't be a surprise to anybody who's had surgery, or who's seen surgery on mobile, thin-skinned bits of the body: things tend to heal slowly when they're either constantly in motion or regularly abused, and a mouth is both. It looks a hell of a lot better than it used to, true, but there are bits that have to be...well, frankly, there's some scarring along the right side of my jaw, internally, that I'm not crazy about. It makes opening my mouth hard; more than that, every time I wedge the tongue depressors in there to stretch, it tears the tissue a bit.

So it's a bit of a struggle.

And, of course, it's making me paranoid as hell.

Occasionally tasting blood, or feeling new soreness here and there as bits of slough finally peel away, makes me certain that I've got some sort of horrible and heretofore-unknown variant of PLGA that's going to fill my entire head. The obturator makes me bite my tongue now and then, but that's not a bitten tongue I'm feeling--oh, no. It's an unusually malignant form of squamous cell carcinoma.

And those lumps where they dissected down to the foundations of the right side of my head? Aren't the normal contours of the fat and muscle and so on, covered by a thin layer of mucous membrane: they're killer manifestations of HPV that are eating me alive. The white stuff at the back right-hand side of my throat isn't scar tissue: it's Something Awful.

In a way, the paranoia is a good sign. It means that I'm no longer so miserable from the horror of diagnosis and the exhaustion of surgery that I don't have an imagination. I've been here before, to a lesser extent, when I've had stuff like pneumonia or a bladder infection or a galloping sinus infection. It's when you start to be really well that you fear you're getting worse again.

It's tiring, though, and it makes me wonder how long this'll continue to happen. I know that at some point, every single thing I do won't be somehow tinged with Perhaps This Will Predispose Me To Another Cancer or Will This Make My DNA Break? The glass of wine I had with dinner last night won't loom large as something that causes nasty things to grow, and I'll eat bacon or salami without thinking twice. Maybe it'll be five years from now, or ten, but it'll eventually happen.

In the meantime, I'll just keep telling myself that my immune system is nice and healthy, as evidenced by my recent state of health, that PLGA has no known risk factors, that I'm perfectly okay and will continue to be perfectly okay.

And I'll try not to panic like I did last night, when I forgot that I'd eaten a brownie for dessert. I flipped out when my mouth rinse brought out dark brown slough.


Wednesday, December 08, 2010

Well, I was going to tell you all all about the most interesting stroke symptoms ever,

But then Stoya and The Mankiller decided to try to blow up the unit.

I left early yesterday; Stoya and I split a couple of shifts so she could do stuff and I could make doctor's appointments. Not half an hour after I left, apparently, Stoya and The Mankiller had to take a patient downstairs for some scan or another, and, as they unplugged the bed from the wall, had a crisis.

The wall plug--which I had called our maintenance guys about and which had supposedly been fixed--sparked, caught fire, and then fell backwards into the wall. And yes, it then caught the wall afire.

I cannot leave those girls alone for a second. As I told Stoya, you're not supposed to set the building on fire if you have a staffing problem; you're *supposed* to tip patients out the back window to rebalance the census.

Anyhow, everybody did everything exactly right. Stoya grabbed the patients; Mankiller grabbed the fire extinguisher; there were some F-bombs dropped over the intercom as they hollered for help. Everybody was fine in the end, that room was evacuated, and it's closed for the next few days as things get *fixed* fixed.

All I can say is, the maintenance dude who swore up and down that he fixed the wall plug is now on my bad books. I am going to go over everything in there with a freaking fine-toothed comb before I let anybody into that room.

Whew. Y'know, I was a little bugged that we were forced to work with leftover, scavenged equipment in a leftover, scavenged set of rooms. Now I'm much, much more bugged, because our infrastructure has been conclusively proven to be unsafe. I feel sort of like Mrs. Rochester, except we're not *quite* up in the attic.

In Post-Cancery McCancersons news, two doctors have now assured me that there's absolutely no reason whatsoever that the distal portion of the sensory branch of my trigeminal nerve should still be acting up. It's not painful, exactly, but it's weird. The right-hand side of my mouth, as in the gums and chin and lower lip, is numb and feels like plastic, and I can feel where the distribution of the nerve is down my cheek and jaw, if that makes sense.

Multiple other people who've had their jaws unhinged say that yes, the trigeminal nerve does tend to get wonky afterwards. They all say it'll take about six months before I can feel my upper teeth and gums, though the lip should come back faster.

That's one drag about having a fairly rare cancer: the doctors, as much as they try and as hard as they work to keep up, really don't know that much about the postoperative period, either physical or psychological. There just aren't enough people every year who need their traps dissected for docs to have good information.

I also met my first post-Drama oral cancer patient this week. He's a young guy, about my age, with HPV-related tonsillar cancer. He was immediately post-op and needed an IV, so I got called to start it. His wife and I talked about OCF and trismus and how soon he'd be able to get out of the hospital (one day sooner than I did, that stinker). Then I went into the breakroom and kind of stared at the wall for a while. I know I'm lucky, but meeting a guy who has months of chemo and radiation ahead of him really made me appreciate it again.

That is, I'm lucky in almost all ways. I'm unlucky in that I apparently have two insane firebug coworkers. Other than that, things are great.

Tuesday, December 07, 2010

Today was a good day.

The Big Boss decided that something that was okay last week was definitely not okay this week, and was in fact pissing her off, but I survived that.

One of my patients decided to do some crazy-ass, CT-requiring, major-yikes Stroke ReActivation Boogie today, but that got dealt with. I survived *that*.

I worked only a half day today and, on the way home, got gas. Nothing survivable about that, except that I also met the (excuse me just a minute; I must squee):


Sweetest, wiggliest, loose-skinnest, nommable-est, floppy-eared-est WUGGLE SNUGGLE pit bull named Max. He was in line at the counter when I went to pay for my fuel, and turned, opened his mouth and smiled, and perked his ears up when I said, "Hiya, Dollface!"

His owner looked gobsmacked that I would be interested in petting a pit bull, especially a pit bull owned by a tattooed, pierced, gangsta type. "I love pits," I said, "my nephew is a pit mix, and he's very sweet." "They can be," replied the gangsta, "but there are a lot of bad owners out there."

I then got my ear licked (in violation of my No Jaws Near The Face rule) as Gangsta and I discussed the merits of a bones-and-raw-food diet versus premium dried food. Who knew I would talk about Muenster versus IAMS with a guy for whom Tupac wasn't hard-core enough?

Then I got home. And the cats were glad to see me, and I took an hour-long nap in a pre-warmed bed with cats holding down the blankets.

Then my Max and I played Tackle The Human for a bit, and my neighbor brought me his award-winning veggie chili.

Tomorrow I might just, if you're all lucky, tell you about the *weirdest* stroke symptoms I have ever seen, courtesy of a patient who came in this morning.

In the meantime, I'm going back to bed. I have a hot water bottle, two cats, and the Zoaters waiting on me.

Monday, December 06, 2010

What you guys did today:

The Crisis I wrote about this weekend is far from averted--that's going to take years and more miracles than even *we* currently have on tap--but it's certainly been mitigated, at least in part.

The folks who got the money are going to be able to do things like pay for heat, and medication, and gas for the car. That was not going to happen before you all gave your okay. Now they don't have to juggle one in order to pay for another, or go short on one thing to get not-quite-enough of something else.

You guys took *so* much worry off of these people's shoulders, I can't even express it. You know how you can just tell when somebody is totally on the edge, how it just bleeds through in their writing, even when they're trying to be brave? Imagine that times about a hundred, from somebody who never complains and never asks for help, and that's what you helped alleviate.

Thank you, thank you, thank you. You all made somebody's day, really and truly, in addition to making mine.

I've said this before: I cry so much more now than before I was diagnosed. It's like all my emotions got sandpapered, and tears come to the surface much more easily. This is the second time in a row I've cried overjoyed, proud tears because of the readers of this blog.

I am *so proud* to be associated with all of you. I am so very thankful that you are all here.

Sunday, December 05, 2010

What you must know about neuroscientists, by one who knows.

1. Neuroscientists are exactly as Gary Larson made them appear.

I have a colleague who is, honestly, one of the nicest guys it's ever been my pleasure to meet. He's also one of the nerdiest.

In a conversation with another nurse about how it's hard for him to get a date, he (the neurosurgeon) wondered why he couldn't get girls when he wore his Starfleet uniform tunic out dancing.

Here is what you need to know: That not only do I, a neuroscience nurse, know that it's a Starfleet uniform tunic and not "one of those shirts from Star Trek," I know that saying so to him would be the Neuroscientist Language Equivalent of saying, "Hi, Captain....wanna go where no man has gone before?"

2. Neuroscience adjuncts, such as neuroscience nurses, are even worse.

When I mentioned to Der Alter Jo that the fact that Dr. Dork had a Starfleet uniform tunic made him about three hundred percent more attractive, she fixed me with a "Well, derp de derp" look.

Here is what you need to know: To get on the good side of anybody in neuroscience, know the difference between a Tardis and a time machine.

3. Neuroscientists use language exactly. No exceptions.

"Interesting" means exactly that. If a neuroscientist calls your coffee cake, a dress, or a problem "interesting", that is exactly what it means. The person who is speaking is finding the baked good/clothing/problem worthy of further study.

Here is what you need to know: This is not necessarily a good thing. The most frightening thing I've ever heard a neurosurgeon say was, "I have no idea why that's happening." That really and truly meant that he had no idea why that thing was happening.

As it turned out, what was happening was the apparently natural disease process of a disorder that does not have a popular name as of yet, as it has only so far been described in five people. That person we were talking about was person number two or three.

4. Neuroscientists, whether surgeons or researchers or office physicians, are confused by excess verbiage.

This took me a long time to figure out. For a couple of years I was convinced that neurosurgeons in particular had no sense of humor at all. Then I learned that the briefer and more succinct you can be, the funnier they will find you.

In real terms, it means that neuroscientists are good with what Theresa Brown, RN calls "The Chatter": the brief, high-points report of what's going on with a patient.

Here is what you need to know: Know everything you need to know prior to turning to face any neurosurgery or neurology resident. If you don't know what you need to know, ask a nurse.

5. Neuroscientists are not socially ept.

Some of them are less inept than others, true. Some of them--like Dr. Dink, my shrink, who is a neurologist as well as a psychiatrist--have got being human almost down. Most of them, though, can only be described as doing pretty well for being recent immigrants to this planet.

Here is what you need to know: If a neuroscientist is trying to be nasty or snippy, you will know it. It'll be blatantly obvious. Otherwise, however they're behaving is just the way they are, and you shouldn't get your panties in a bunch about it. In very rare circumstances it's worthwhile to pull them aside and tell them not to be assholes, but think twice: most of the time it's not going to work.

And finally, remember: If you have to work with residents of any discipline, Rule Number One still applies: Feed them and all will be well.

Cancer took my palate and took my appetite, but it cannot take my SNAAAAARK!

Lest you think that Nurse Jo has had a sudden reversal of personality, and now finds things to love and value in everyone she meets. . . .

There is going to be a massacre the next time some genius house manager decides it's appropriate to co-room two people of opposite sex and of widely varying neurological status. There's something about the hum-wonk-beep-snort of a ventilator, and the other things that go beep-woop-gronk that go along with being on a ventilator, that just doesn't make for a quiet night for the neurologically mostly-intact.

Especially if the mostly-intact person in question is also a little bit crazy and sort of climbing the walls already.

Yet the GHM decided that, what with all those full beds in the hospital (not really) and the absolute necessity of these folks being in the NCCU (not really), it was okay to co-room them.

Yeah, I snipped at people. I even used big words. Didn't help.

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

The Crisis has been slightly mediated, thanks to the opinions of you fine readers, which were running all-to-zero in favor of "fix the damn crisis".

Also, several people suggested funnelling donations either through or to organizations that could provide tax receipts. This is an excellent idea which I have no clue how to implement. Help?

And finally, who has a favorite small-works charity they'd like to recommend? Leave 'em in the comments, along with your favorite easy recipes for one person.

Saturday, December 04, 2010

Serious question on which I would like feedback:

When I started with that Donate button over there to the right, I figured that the HN Therabite Fund would get enough to buy a Therabite for person who needs one every six months or so.

Turns out the readers of this blog donated enough money to buy three in thirty-six hours, thus making my head explode, and the money is still coming in.

Which raises another question: I had planned to take the Donate button down after the HNTF hit two grand, because money is a pain in the ass to deal with, especially in large amounts. HOWEVER....

A situation has come to my attention. I can't give even the vaguest details, except to say that the people involved are tangentially related to the subjects this blog covers, the situation is dire, and the help I'm considering has not been requested in even the most oblique way.

What I'm saying is this:

You guys donated a shitload of money to a specific cause: getting jaw therapies to people who need them. So far, I have more potential Therabites than I do takers, so I'm donating the cash straight to the Oral Cancer Foundation to let them use it for research or bills or whatever they need. OCF is, like, two people--no staff, no fancy mailings--and the guy who runs it puts a whole chunk of his own change into it. Basically, I know the money's actually going to make a difference and not going to be wasted, AND it's going to something that y'all originally intended it to go to. Brian, the guy who started OCF, wants me to call him next week so we can talk about it.

There's extra money in the fund. It's not a small amount, and it keeps growing. With luck and goodwill and the generosity of readers, it'll continue to do so for some time.

May I use that money to relieve emergency situations, or would you rather I either keep it for oral cancer/some other established charity? It's y'all's call. I should mention here that even if you guys decide you'd rather have your money go to an established charity or three, I'm still going to do what I can to alleviate the crisis I mentioned above on my own, so you're not taking bread out of somebody's mouth.

You guys are the ones who gave the squish that got this whole dadratted thing started. Making decisions like this by committee is always a bad idea, but it's *your* money and so I want your input. I reserve the right to make the final decision by fiat, but I will take everybody's comment into account (unless it's all, "Send it all to me, dood.").

If the majority of comments lean toward establishing a recurring, say, quarterly fund for charity, then this is what I'll do: Solicit ideas and take a vote for two charities (with OCF being the third), then parcel up the money four times a year and make donations out of the fund.

If the majority of comments say "Do what you want" or "Fix the crisis", then I'll give you all as much detail as I can.

I'll make this pledge here and now: as near as I am able, if it comes to fixing a crisis, I will ascertain that the money will not go to waste. I'll consider any requests for cash with an extremely narrow eye, preferring to give out money to people who haven't asked for it. And I'll give you as good a story as I can about the recipients, dependent on their desire for privacy.

What do you say? I know what *I* would like to do, but I want to know what *you* think.

Thursday, December 02, 2010

The only thing that could make me more excited than hinty-gazillion dollars in the Therabite fund...

...has just happened. And I know you guys will understand, because you're discerning people.

I live near one of the largest (certainly the most intellectually and politically important) cities in Texas.

I have been on a quest--make that a Quest--to find cheese curds so that I can make my own poutine. I miss poutine a lot. And cheese curds that still have some squeak to 'em are hard to find; you usually have to have them flown in from Wisconsin. There's no place, even in Bigton, where you can get really fresh cheese curds. And there's NOWHERE in Bigton where you can get poutine. Breakfast tacos? Sure. Lengua? Yep. But poutine? Schah.

Tonight I found a restaurant in a town not too far from Littleton, where I live, that has poutine. Not just cheddar cheese shreds with gravy, but gravy that's imported from Montreal. The people who make it are from Montreal.

And they have homemade tiramisu.

Going on a pilgrimage, brb.

Wednesday, December 01, 2010

One last update before I go to bed.

It is 9:03 CST.

The Therabite Fund is currently at more than a thousand--strike that--eleven hundred dollars.

We raised two hundred dollars in twenty-four hours and more than nine hundred dollars in the subsequent twelve hours.

I have had one too many glasses of wine, sitting and hitting "refresh" on the PayPal page over and over and over. That's two and a half Therabites, or a Therabite and whatever else the founder of OCF says is necessary, or whatever care I can fund through my prosthodontist.

The possibilities are endless, and it's all because of you. I am pointing at each one of you individually:

The person who gave a whole chunk o' change.

The person who gave ten bucks and sent me an email apologizing for not giving more.

The person who's getting back to life, having come back from the dead, and is giving a bit.

The class of nursing students who each gave five bucks.

The person who had cancer themselves and who knows what a prosthetic can do.

You guys! We raised a thousand dollars!

Millenia ago, a bunch of people who'd just fought to regain their Temple entered that holy space to find blood and dirt and ashes. Their sacred lamp, the eternal flame that they kept burning as a tribute to the goodness of their God, was guttering. It only had a single drop of oil left in it.

For eight days, the Maccabees watched as their lamp continued to burn, in defiance of logic and the laws of physics.

Later, Christians took this idea and expressed it as the story of the mustard seed: out of something impossibly small can come something so huge, so beneficial, that it swamps its beginnings.

You, the readers of this blog, took the awful, dirty, horrible, fear-ridden space of the cancer that I got and have turned it into something more beautiful than I could ever imagine.

I did not realize how many tears I had to cry when I lost the part of my mouth that made speech easy and simple.

I do not have enough thanks for each of you tonight, for making that sacrifice something gorgeous and lasting for other people.

Thank you for making it worthwhile. Thank you.

Holy crapping monkeys, you guys.

Therabite #2 is more than halfway to being bought.

You all raised more than two hundred smackers in less than twenty-four hours.

This is all you. All I'm doing is providing a piggybank for other peoples' goodwill.


Edited to add:

I am sitting at my desk, crying. Crying seems to come really easily to me since this whole Cancer Thing got started.

The Therabite fund just got a bunch of donations that make the purchase of one, plus a chunk of another, Therabite possible.

More than six hundred dollars came in in the last hour. One huge donation came from one person whom I'm not naming but whom I am forever grateful to. And I just ended a sentence with a proposition, which gives you some idea of how worked up I am.

When I started this blog, it was nothing more than an outlet for my own self-centered musings. Over the years, people have talked back, or written asking for advice, or (usually justifiably) called me out on stupid stuff I've said, until it's become more of a dialogue between me, one nurse on the Great Dusty Plains of Central Texas, and the Huge Interwebs World.

I never felt that as strongly as when I posted that holy fuck, I have cancer, and I'm really scared. Overnight, people came out of the woodwork to offer support, their own stories, and their prayers. That was more than enough--I can never, *ever* pay back what y'all did for me. You kept me alive on days when I was so frightened that all I could think about was going back to work and stealing insulin from the Pyxis.

Now you all have come through in a way that humbles me and makes me overjoyed. Because you give a damn about what happened to one person whom you've never met, you're making it possible for any number of other people to have hope, and a decent quality of life, and maybe a little easier time just *living*.

I don't care whether you gave a tenner or a five-spot or a hundred bucks: I am grateful, grateful to you. You all and God and everything else have been so, so good.

I'm going to email the founder of the Oral Cancer Foundation now, since we seem to have more Therabites than takers (zut alors!) and work with him on this.

Happy Hanukkah, everybody. The miracles didn't stop with the lights. No, they did not.

What you did this morning, dear readers:

Michele is in her fifties and had no risk factors for cancer when she was diagnosed with squamous cell carcinoma of the tongue.

She had a tongue resection and a lymph node dissection and started radiation in October of this year. She has a total of ten radiation treatments left to go: five localized and five generalized.

Because of the radiation, her jaw muscles are scarring up and getting invaded by collagen. It's harder for her to open her mouth now to get the mouth guard for the radiation treatments in, so she knows she's losing ground.

You guys sent her a Therabite in time for Christmas. You bought it this morning and it'll be shipped out this afternoon.

Because you did that, Michele will get the opportunity to use a clinically proven device that will help her increase and maintain the functionality of her jaw. She'll be able to eat comfortably and do the sort of really, *really* persnickety oral hygiene care that radiation treatment demands. It will make a huge difference in her quality of life, as well as making it possible for her to come through this healthy and strong.

Thank you. Thank you so much.

I knew I was lucky when I looked back over this whole cancer thing and realized how badly it could've gone. I'm reminded of how lucky I am every time I look at the PayPal balance sheet and realize what you guys have done for somebody you'll never meet.

Tuesday, November 30, 2010

In Which Jo Twiddles Her Thumbs A Bit.

When a dear, dear old friend decides to grow a moustache as part of a fundraising drive for cancer research, it's best to support him.

Even if the moustache is cringe-worthy.

Like, *really* cringe-worthy.

I would rather see Abilene Rob with a 70's Pornstache (which he once threatened to grow, God help us all) than see my beloved Brother In Beer sporting facial fur again. The first would be temporarily traumatic. The second might scar me for life.

Some guys look distinguished with beards. Some guys look kinda classy with a moustache or a soul patch. BiB looks like he's come down the mountain for his annual hardtack-buying spree and bath.

Darling man, I will send you all the money you want, as long as you promise to shave.

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

Speaking of money, an announcement:

The readers of Head Nurse have made it possible for a person from the Oral Cancer Foundation's Forums to get a Therabite that they could not afford to buy themselves.

You guys really have no idea how big a deal this is.

Trismus, or a restriction in jaw movement, affects the majority of people who undergo treatment for oral cancer. The percentages range from 54%, for those folks who merely have surgery that dislocates or hyperextends the jaw (as mine did) to 100%, for those folks who have to have radiation of the face and neck.

"Restriction of jaw movement" doesn't really cover it. My trismus is minor: I have an unforced mouth opening of about 21 millimeters (just about an inch) prior to stretching. Any opening more than that requires that I stretch, and that involves pain. Sometimes I have jaw spasms so severe that I can't sleep. Sometimes my jaw locks up as I'm eating, and I can't close my mouth for a second.

But I am LUCKY. There are people on the forums who can't open their mouths more than seven millimeters. Seven. I think there might be somebody there who can't even fit one tongue depressor in her mouth, and I know there's a person whose *largest* jaw opening is about what mine is prior to stretching.

Think of what being able to open your mouth less than half an inch would mean.

Think of what not being able to open your mouth at all would mean. You can't eat; you lose weight even with supplemental feedings. Talking becomes difficult; oral hygiene is impossible.

A Therabite, which allows a person to stretch and exercise their jaw in a measurable, comfortable way, can literally mean the difference between being able to talk, eat, and take care of your own teeth and...not.

I added up the money last night that was in the PayPal account and cried. All I'm waiting for now is to hear back from the two people I've emailed, to see if they still need the device.

You guys. You guys. What you have done is huge. You have made such a difference for somebody, and once they're done with the Therabite, they'll pass it on to somebody else who needs it, and what you did will keep going.

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

In other news, I have to figure out how to catproof a Christmas tree. That should be interesting.

Perhaps hang it from the ceiling?

Monday, November 29, 2010

It's been a bugger-all kind of day.

Which, in itself, is a milestone.

I had two doctor's appointments scheduled today. Neither one of them was earth-shatteringly important--one was to tweak the obturator, the other a recheck for a minor, now healed, problem. I cancelled 'em both, as I didn't feel like driving halfway into Bigton and then hours and hours to Yeehawville. I'll reschedule 'em for later, if I don't rebend the obturator wires myself. I didn't sleep well last night and didn't feel much like exerting myself on the highway.

Attila the Trainer came over, and I had a nice little baby workout for an hour. Eight-pound bicep curls? Sure thing. Twenty curls on a balance ball that left me sweating and panting? You bet. Five minutes of walking--dear Heaven--at 3.5 miles per hour and I'm beat? Bring it on.

Then I had lunch and a glass of wine and a long, luxurious nap. I woke up a couple of times and drowsily petted kitty-bellies, then went outside and rubbed Max-belly, then wandered around the back yard taking measurements of various things. Then I changed my sheets.

You will note that absolutely nothing of any apparent importance happened today. I did not break any new endurance records, clean ANY of the things, stay up longer than usual, or eat any new foods. In fact, I laid around most of the day like a lump and spoiled both myself and my animals. I got out in the sun for a while and made some tasty spinach dip. That was really it.

Which, as I said above, is a milestone. Because--and this is something that I just figured out--after a Nasty Diagnosis and a Near Miss Of Something Much Worse, you tend to overschedule things. You want to make every second of every day count, and do something measurably different or better than the day before, every day. It becomes an obsession and then a habit.

Life sucks if you do that, unless you're one of those motivational authors who makes his living publishing books with lots of exclamation points in them. Sometimes kitty bellies are as important as dragging ass up a highway, or scrubbing the floor, or finishing the Christmas shopping.

Sunday, November 28, 2010

Attack (but not really) of the Old Old

"Old-Old" is a semi-official term in scientific circles used to describe people over the age of 90 (though that varies). I've met two people who'd qualify as old-old this week, which is kind of unusual in this field. I mean, generally speaking, if you're going to have a stroke, you're not going to be 95. You're gonna be 50, and something is going to kill you before you hit 95.

But lo! What came in t'other day but a 95-year-old? A sharp, active 95-year-old who (aside from a couple of minor, controllable problems) was about 60 in physical terms? That same day I started an IV on a--get this--one hundred and TWO year old who'd just had a knee scope. I had to chase that patient down in the hallway to get them back to the room so I could put the IV in.

When people over 90--and over 100--start showing up in your hospital's physical rehabilitation unit, you know there are some good genetics going on.

The 95-year-old's kids and grandkids and great-grandkids all showed up over the course of a few days, so I got to meet them. The son and daughter, both in their mid-seventies, looked easily twenty years younger (as did the parent). The grandkids, who were my age, looked 30. The great-grandkids were kids, so they didn't look any younger than they were.

It was like being faced with Lazarus Long and his family, right down to the red hair.

It was Longian in another way, too. Let's face it: if you make it past about 80 without any major health problems, you're running pretty much on genetics. Diet and exercise and not smoking and not playing with flaming chainsaws will do a lot to make your life up to about 75 healthy and active, but after that? Stuff starts to wear out. How fast it wears out and what exactly goes first is largely dependent on your DNA.

Good DNA will enable you to live as long as you're going to live with a minimum of health problems. Good *lifestyle*, on the other hand, will protect you from chronic diseases that would make your life hellish for thirty years before you died. What everybody wants is a life that's active up until the end, then a fast decline without torture.

If I were in a philosophical mood, I could turn this into a meditation about how one spends one's life, and how to make 40 years seem like 90. I'm not feeling philosophical.

It was just really freaking cool to meet two people who remembered not only the second World War, but the coming of electricity, piped water, paved roads, and telephones to their neighborhood.

Wednesday, November 24, 2010

These are the things you appreciate.

I have an absolutely redonkulous cat.

His name is Notamus. Observe:

Obviously redonk.

Notamus likes to be cuddled. When I'm sitting at this desk, watching Jeremy Brett (rest in peace!) as Sherlock Holmes, he leaps into my lap and proceeds to act as though he's Boneless Cat. His head lollygags over one of my legs, his hind legs stretch waaaay out, and he wants belly rubs.

His brother is not quite as redonk. Flashes will have none of that boneless stuff; instead, he likes to climb up my front and down my back. Cute, if it's a half-pound kitten doing it. Not so cute when it's an eight-pound cat.

Very serious.

I love my cats. They kept me from going over the hairy edge when I was stuck at home.

I also love pancakes. They're easy to eat, they're a good source of quick energy, and made with sour cream, so delicate they nearly float off the plate.

I love my dog. Duh. If there's a Zen master in existence right now, it's him.

No caption can do him justice.

I love the friends and family that I've got that have kept me from climbing the walls, and told me that I sound great, and generally been cheerleaders for me.

I love that I have a job where nobody really notices if I sound like a cross between Daffy Duck and Bridey Murphy when I get tired.

I'm happy that it's going to rain tonight and be cold and rainy tomorrow, and that I have a fridge full of Thanksgiving food that I *like*, including peach ice cream, and a nearly-full bottle of Dalwhinnie, and plenty of Jeremy Brett on Netflix, and a copy of "Young Frankenstein" that is just waiting for me to watch it.

I may only have one third of a mouth left, but I'm thankful with all of it. I hope your Thanksgiving has half as many things to be grateful for as mine does.

Tuesday, November 23, 2010

I have a lovely pair of shoes.

They're from Boden. They're plimsolls (in Boden-speak; we'd call 'em sneakers or Keds) made of cowhide. They're black with white dalmatian-type spots on them, and green satin trim.

I love them.

So, apparently, does Flashes. I heard growling and munching and snarling in the office and walked in to find him locked in Combat To The DEATH with one of the shoes.

I got it away from him. It is unharmed. He has reverted to killing his brother.

Why are my cats simultaneously so sweet and so weird?

Sunday, November 21, 2010

The one month anniversary of...well, of waking up, I guess.

I was hunting through my "All Mail" box tonight and found emails that Beloved Lotion Slut Pens had sent out to sundry friends and family on the day that I had surgery. Reading them, I cried and cried, unexpectedly, because I hadn't thought of how what had happened would look from somebody else's point of view. I also hadn't realized how incredibly comforting and calm Pens was about the whole thing, and how much I owe her for her levelheaded stability in the week after surgery.

A month ago I woke up in the morning in a hospital bed as somebody from the front desk delivered flowers. There was a bunch of orange lilies and fall leaves from my uncle, and a lovely pink arrangement with stock and roses and a daisy from The Brother In Beer. A couple of my coworkers came in to see how I was doing, and then two of the otolaryngology residents stopped by to see how I was healing. That's really all I remember.

Two days ago I stood at the bedside of one of my patients as one of those otolaryngology residents scoped her sinuses. *I* knew who *she* was, but I wasn't sure she recognized me as the person whose throat and oropharynx she had cauterized. I didn't say anything.

As she was rolling up the scope tubing, she glanced at me and said, "You look good. You sound good. Do you feel okay?" I just nodded, and thanked her for doing such a good job on my mouth.

My last words before surgery were "Gosh, it sure does, doesn't it?" after the anesthesiologist told me that the gas he was giving me would make me dizzy. My first words after surgery were "I am not going to work today. I just had surgery!" to my boss, whom I saw standing in the post-op bay at the foot of my bed.

A month ago, I freshly didn't-have-cancer-any-more, though I didn't know it. I knew I wasn't wearing the silver Braille ring I normally do, so I stretched my hand out for it and Pens gave it to me. I knew I hurt, so I pushed the magical button that Nurse Carolita had put into my paw. I tried to blog, just enough to let everybody know I was okay.

A month later, I'm still learning that I have to wear a plastic thing in my mouth to be intelligible. I leave the house occasionally without it on, and have to turn 'round and come back and grab it off the kitchen counter. I still get surgical slough out of my sinuses or throat, though it's not as bad as it was--not by a long shot--in the first two weeks after surgery. I can talk, pretty well, actually--most people think I'm at the tail end of a cold unless I'm really tired, in which case they think my cold is a bad one.

Today I'm aware that things haven't really changed all that much, unless you count the ways that they've changed completely. I'll have a plastic thing to deal with for the rest of my life. Friend Lara has just started the long road to being an ex-cancer-patient, and Friend Pens is looking forward to her own surgery later next month. My uncle is still obsessed with shooting the (highly illegal) twenty-gauge shotgun I keep in the house, and the Brother in Beer is still brewing.

I can't work as much as I'd like to, yet, and I can't eat crunchy dry stuff. My upper jaw hurts, still, where that tooth was sawed off and the bone avulsed. There's still an enormous hole in my upper jaw that leads directly sinuses, I guess, that has to heal by granulation and is doing so slowly. I'm tired most of the time.

But I no longer have cancer. I have a scan coming up in January, to see how the bone in my head is healing, and an appointment tomorrow with the prosthodontist to try to make my speech even more perfect. Next September or October I'll have the first official follow-up scan to make sure there has been no recurrance of cancer.

In a year, when I get the word that that first follow-up scan is clean, I'll change my birthday as Lara suggests. It's no longer a big deal to me to celebrate the day I get a year older; I'd rather celebrate the day I got another chance. Again.

This is how you know things are getting back to normal: Sunday Afternoon Fantasy Cooking!

It's about time to work up the stuffing recipe I make every year. That's the one that has pecans and onions and celery and garlic in it, along with about six pounds of butter.

This year, I'm having only those things I like about Thanksgiving for Thanksgiving. That means mashed potatoes and stuffing, asparagus, steamed green beans, pie (probably cherry) and bratwurst.

What? You don't eat bratwurst for Thanksgiving?

Or maybe I'll go get some fried chicken in the hood the day before. Cold fried chicken with all the trimmings....or barbecue. Hmmm. Barbecue for Thanksgiving.

No matter how the food works out, the evening's entertainment will involve going to see "Burlesque" at the movie theater/bar/restaurant here in town. Nothing could top a quiet Thanksgiving in like Cher and Aguilera in spangles.

Saturday, November 20, 2010

Saturday Night Slept-All-Day, Distracted-By-The-Background-Of-The-News Music!


I am very, very, quite surprisingly tired. I had not expected this. (Yes, yes, I know, recovering from surgery, taking time to heal, body needs rest etcetera take it as read. But still. I am surprised.) Seems to me that if you can run three miles in thirty minutes and squat a hundred pounds sixty times in a row, you ought to get off a little easier after a palatectomy.

Luckily, our patients were relatively easy. Only one fight broke out between a patient and his family (why is it that the patients who shout always end up in semi-private rooms?), and that was easily settled. He had had a pretty massive carotid occlusion, so he wasn't in top form.

I really wish somebody had warned me about how hard it would be to stretch my jaw at work. I'm used to stretching about every two hours with the bunch of tongue depressors, and for two days I got exactly one round of stretching in. The end result is a major dimunition in my jaw's range of motion; I can *almost* get two fingers in between my front teeth after stretching.

However--and this is a good reason to stay in health care if you're there already--one of the speech/language pathologists at work has an old Therabite she's not using, and has offered to dig it out of her desk for me. Yes, please: saving $398 on a device I can use at work is a good, good deal right now.

Speaking of saving money, I did mention that my pink plastic prosthetic palates are not considered essential medical equipment, right? Yeah. Not covered by insurance. Which blows my freaking mind. As Woolywoman said back when I was having Major Body-Image Issues with the obturator, it's not pretty to look at, but what it does is beautiful. What in hell do you do if you don't have insurance? Seriously: without an obturator, my speech is completely unintelligible. What would some poor sot over at County General do? Hope for funding and pray that the first obturator revision was good enough?

In nursing news, I have additional advice besides "don't let a general surgeon evacuate your subdural hematoma": Don't let just anybody intubate you. And, if you do, be sure your family knows to tell the intensivist handling your care that you've been on benzodiazapenes for thirty some-odd years, so that those drugs actually get administered and you don't have a huge seizure from discontinuation. Otherwise, you'll end up with me, having stroked out your left PCA, and it'll take you a long time to be well enough to head home.

Honestly: a five-foot tall woman in her sixties is not the same, anatomically speaking, as a six-five guy in his thirties. You cannot use the same airway for the former as you'd use for the latter. Sheesh. Torn trachea? No fun.

And, in Give Me All Your Money, All Your Hugs And Kisses Too News, readers of this blog have raised two hundred and seventy-five dollars for the Oral Cancer Foundation.

Let me tell you a little about OCF in hopes of getting you to pony up a little cash:

The Oral Cancer Foundation is *the* place to go if you've been diagnosed with an oral cancer of any type. No matter how rare your cancer is, you'll find somebody on the forums there who's dealt with it, or an article in their library on it.

OCF was founded by *one* guy. His name is Brian Hill, and he survived the metastatic tonsil cancer that hit him in 1997. He posts on the forums, people, and works every day to keep OCF relevant as a source for folks with oral cancers. The whole reason for OCF's being is that Mr. Hill couldn't find jack freakin' squat out there in terms of information when he was diagnosed.

Here's why it's important--at least to me--that you donate:

I got an oral cancer for which there are no risk factors. That makes me unusual: the majority of people who get oral cancers have at least one risk factors, be it smoking or drinking or exposure to HPV strain 16. Regardless of how you end up with it, though, oral cancer is a huge, life-changing deal.

I had a baby cancer. Mine was one of the (only!) 45% of oral cancers that was found prior to metastasis to other areas. Mine was easily resected, and I didn't require radiation as an adjunct therapy. Even with those facts, my life has changed forever: I have no soft palate and I'll have to deal with trismus for the rest of my life.

Imagine what it must be like for somebody who's got to have both an oral surgery and a neck dissection, followed by radiation and a feeding tube and so forth.

Oral cancer is skewing younger and younger every year, in part because of the near-ubiquity of HPV-16 in the adult population. Imagine, then, the neck dissection and the tongue removal in a thirty-year-old.

I have $275 in a separate account earmarked for OCF. My goal is to hit $400 before the end of the year, so that I can buy a Therabite and donate it to somebody who needs it on the OCF Forums. If that happens, I'll start hitting you guys up for money every six months: two Therabites a year to people with surgery- and radiation-related trismus would be HUGE in terms of quality of life.

Donating is your own business. I promise not to turn this blog into a pledge-drive, a la NPR. If you've got five extra bucks and you want to donate it to something, consider sending it here. PayPal charges overhead to process donations, but I'm eating that cost myself. This is that important to me.

So donate, if you can and if you want to. This blog has been mostly about my mouth for the last two months, and I'm putting my money there now.

Edited to Add: Thank you, thank you, thank you! These last couple of months have shown me that I have the best readers and commenters on the Innterwebz. Y'all rock. (BTW, I'm not keeping track of who's donating, so don't feel guilty if you can't come up with the scratch. This is entirely voluntary, dudes; there are plenty of other worthy causes out there.)

Tuesday, November 16, 2010

I'm back at work, so be afraid. But not as afraid as if you'd seen that one doctor.

Just a tip from Auntie Jo to the nameless millions of future hospital patients out there: if you sustain a subdural hematoma in a fall at home, and you need that subdural hematoma evacuated, make sure it's a neurosurgeon doing the evacuating.

Because if you let just any Fred Friendly into your brainbox, it's possible things could go very wrong indeed. This goes double if you're from Teenyville, that tiny town just south of Wherezat and east of Whadyasay.

Grandma took a fall a couple of weeks ago at home and conked herself on the head. It wasn't a very big conk, or a very painful one, but Grandma, being the careful sort (and being on coumadin and aspirin), took herself to the emergency room just to be on the safe side. The folks there checked her over, did a scan, and kept her overnight for observation. This was a very good thing, because Grandma developed a subdural hematoma during the night, and her level of consciousness dropped.

Subdural hematomas are interesting creatures. They're called the "walk, talk, die" injury because of the way they present: you're fine for some amount of time, and then you're very suddenly not at all fine. You become not at all fine because of bleeding below your dura, the covering of your brain, that puts pressure on the brain itself. A brain can stand quite a lot of abuse (that's the "walk, talk" part of the equation) before it finally starts being squished beyond tolerance or repair (that's the "die" part).

Anyway, back to Grandma. She started getting wonky, so the folks at Teenyville Memorial did a series of CT scans that showed an expanding subdural hematoma.

The correct thing to do at this point would've been to ship Grandma to a larger hospital, like Sunnydale or County General or even Our Lady Of Questionable Mercies. Instead, one of the general surgeons at Teenyville Memorial decided to take matters into his own hands and evacuate that subdural hematoma himself.

Evacuations are done with suction. Careful, gentle, less-is-more suction. By qualified neurosurgeons. In a neurosurgical suite, with nurses and assistants and anesthesiologists who know what they're doing. Because, if they're not, you end up with a cowboy with a suction catheter who suctions out part of Grandma's brain.

I'll just let that sit there for a minute while we all look at it in silence.

Yeah. It made me sick to my stomach, too, and I don't quease easily.

So Grandma came to us, because of course we work miracles, including inducing our patients to regrow large portions of their frontal lobes. (Yeah, right.)

Grandma is off the ventilator now, but she'll never write another thank-you note. She doesn't recognize her kids, near as we can tell, or even follow any commands. It's an even bet what did this to her: either it was the jacked-up surgery or the intense high fever she had afterwards (which is usually a sign that something has gone badly wrong in the brain) that wasn't treated correctly.

The general rule of thumb is that, if a patient has a temporal-thermometer temperature of 40 (that' about 104 or thereabouts), and that patient is an adult, you say the hell with cooling blankets and start packing 'em in ice. You don't put them in a phenobarbital coma in an attempt to calm things down.

Sunnydale Hospital: For those times when even a Dustbuster won't pick up the pieces!

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

So, yeah: the first day back at work was a runner of a day. There were more patients than I have fingers on one hand who were on multiple drips (note to self: three four-channel IV pumps on one pole will cause that pole to tip over), there were people with interesting breathing patterns, people with crazy-ass neuro changes, and folks who hovered on the edge of disaster all day long. Add to that the usual postop cases, and we had fun.

But you know what? I loved it. Getting back to work, while it was taxing, was the best thing I could've done. I spent the day as an extra set of hands, helping everybody without carrying any acutely ill patients on my own, and it was *great*. I took two very long breaks to stretch my jaw and rest my face, and ate lunch like a normal person, with conversation and everything.

It was also nice to hear from the most critical people in the world (CCU nurses and intensivist physicians) that I sound mostly normal and look really good.

Tomorrow is another day in the unit. It feels really good to type that, and to end the sentence with the word HOORAY!

Sunday, November 14, 2010

From the mailbag: How's stuff work now?

Faithful Minon Aiden has an excellent question, via email: How do things work now, as far as swallowing and breathing go, since your soft palate is gone? What else is different after surgery?

Gracious. Where do I start?

Let's start with airway and breathing, since those are always your first two concerns. My airway is basically unchanged with one exception: I can no longer block my oropharynx off from my mouth. What that means in practice is that if I lean over without the obturator in, saliva drains from my nostrils. I also have to be careful with swallowing without the obturator in, because it's much easier for liquids and semisolids to enter my sinuses.

I cannot suck on a straw unless I hold my nose. Likewise, I can't blow out candles or blow up a balloon without holding my nose. Whether or not that will change as the obturator situation changes, I don't know. Suffice to say that for now, I have no suction capability and no blowing capability.

Aside from those minor concerns, and the fact that carbonation bubbles head straight into my sinuses, things are pretty much unchanged.

Swallowing is a little different. I prefer to eat with the obturator out for two reasons: it's easier to swallow neatly (ie, without stuff getting stuck up on top of the obturator) and quickly, and I choke less. With the obturator in, I can eat and drink fine--don't get me wrong--but it takes considerably more concentration than it used to.

It almost feels normal now to take a small mouthful of fluid and turn it into four or five swallows. I can no longer gulp liquids. Shots are right out; each ounce of liquid that I swallow equals six to eight separate swallow cycles.

I miss that first gulp of cold Perrier Citron that would make the back of my throat burn. Otherwise, no big deal.

I have a very hard time lying either on my front or my back with the obturator in; soft tissue tends to collapse around it and obstruct my breathing or trigger my gag reflex. The answer to that is, if I'm getting a massage (say) to lie however and just breathe through my mouth. It's snorey, but it works.

One of the most common side effects of a transoral surgery, and the one that concerns me most right now, is trismus, or jaw stiffening. I have a minor case of trismus, which is defined clinically as not being able to open wide enough to insert two fingers between your front teeth. Mine is classical in that the sensory portion of my right trigeminal nerve (CN5) is also affected. What that means is that I have a beard-like distribution of numbness from just in front of my ear to about halfway across my chin. The right side of my lower lip is numb, as are my teeth and jawbones on that side.

Simply put, when I'm brushing my teeth, I have to look carefully at what I'm brushing to make sure I'm not brushing the top of my newly-enlarged mouth. I can't feel a darn thing.

Eventually, with enough jaw stretches and enough time, both mobility and sensation will come back. In the meantime, what this means practically is that I don't eat in public and I stretch my jaws six or seven times a day, whether with fingers or stacked tongue depressors.

There's also some tongue numbness left thanks to the fact that my tongue was retracted during surgery. Imagine Bill The Cat--that's apparently what I looked like. Only the tip of my tongue is numb now, thank God, because before (when it was most of my tongue) it was a pain.

Overall, I have been incredibly lucky. Because everything was cauterized during surgery, the post-surgical pain was actually less than came with the original biopsy. I have the occasional ache where they removed the one tooth, and of course I wear out quickly trying to talk. Aside from those problems, though, and a pretty constant jaw-ache, I'm quite comfortable.

And, since I don't look any different, I have a lot less to deal with than I would've if I'd had an open neck dissection.

So, yeah. That's how stuff works now, or doesn't. The "doesn't work" column will have to be updated nearly continuously over the next year as the obturators change. We'll see what happens with the next fitting, two weeks from now.

Something *else* nobody tells you about having/having had cancer...

How hard it is to get back into a normal mindset.

I've been in crisis mode, reacting and planning to something horrible, since the first part of September. Now that I'm not in crisis mode any longer, I'm having a hard time functioning.

Work will help. So will getting used to the idea, gradually, that I no longer have cancer; that the worst thing I have left to do is to learn to live with the obturator and get the occasional follow-up scan. Oh, and grow my hair back out.

What an odd feeling this is, going from cursed to cured in a week. It didn't even happen in stages: it happened in one phone call, when Terri (Dr. Crane's PA) told me that not only were the margins clear, but that radiation wasn't indicated. I'm considered cured. And with that five minute phone conversation--and I didn't even have my mouth in, as the phone woke me up--I went from being a cancer patient to somebody who once was a cancer patient.

In a way, I feel like a cancer poseur. I think about Friend Lara and all the shit she has left to go through--it's the stuff I feared most: radiation and chemo. I think about asking for advice on the Oral Cancer Foundation forums, where people have it so much worse than I do.

I feel vaguely guilty for having gotten off so easily. I feel really guilty when I consider how sorry I feel for myself when it comes to things like my speech.

It's been so fucking random.

I never thought I would fear the word "cured". For all of September and most of October it was all I thought about. I meditated on the word, planned for what it would be like to be cured. I never imagined the thought of the word would make me paranoid again.

Oh, well. I guess the change in thought'll come with time.

Meanwhile, I'm going to do something crazy and paint my toenails. That's just the sort of thing that went by the wayside when I had cancer.

Saturday, November 13, 2010

Happy Saturday! I need a minute of my life back... I can watch this AGAIN!

Friday, November 12, 2010

Yeah, well. Okay. Er.... .... ....Now what?

That was fast.

In a little over two months, I went from "I might have cancer" to "I have cancer" to "I had cancer."

I had cancer.

I HAD cancer.

I had cancer. Then I had surgery. And, because my surgeon absolutely kicks ass, I now do not have cancer any longer. There's a ten percent chance it might come back some day--fifteen percent at the outside--but that still leaves me an eighty-five percent chance, at worst, of not ever having this cancer again. If somebody told you, "Look, the *least* we could offer you would be an 85% chance of being cured for good," wouldn't you take it? I know I will.

What I have right now is a huge hole in my head and no time off available at work. I have debts to pay--thankfully, none of them is out of reckoning--and muscle mass to rebuild and an obturator to get used to. I have rehab to finish and speech to relearn and swallowing to perfect. I still have post-operative slough to rinse out of my head every night, but that's lessening considerably as the days go on. I have jaw muscles that are responding very slowly to Flexeril and a stretching routine.

I've also got anxiety attacks. For some reason, they started about a week and a half ago, just as I was pulling out of the Lortab-induced fog I'd been in. I don't know why they didn't start before surgery; Beloved Sis has the theory--and I think it's a good one--that I'm suffering from some form of PTSD. Somehow, everything worked itself out in such a way that my anxiety over matters could reach a peak with every new development, and now that I don't have any new developments (except not having cancer), the anxiety is free-floating and looking for a place to land.

I have grief. The tumor somehow was smaller in person than it looked on any of the scans that pinpointed it. Don't ask me how that's possible. I mean, this particular tumor is quite susceptible to immune function; maybe we all did something right. I can't explain it logically, but again, I'll take it.

But that means that I lost a whole lot more of my mouth than I probably needed to. Don't get me wrong: I am not complaining in the least. The trouble with low-grade tumors is that they don't respond well to things like radiation; therefore, getting it out with good margins was exactly what I wanted. I told Dr. Crane that I liked aggressive, that aggressive was good, and I'm happy with the results....

......but I miss my uvula.

I have a whole community of new friends thanks to this. People who have rare cancers tend to really stick tight to each other.

I have yet another second chance. I've gotten so dadratted many of 'em, you'd think they'd've worn out by now, but here's another one.

For now, all I have to do is keep putting one foot in front of the other. These next few weeks may be harder than the last few, as everything gets shaken out into the new normal. All I have to do is get well, and get strong again, and get used to breathing past a plastic plate.

Later I'll integrate the Old Jo, the New Jo, and the Jo that had cancer for those months. Right now I'm going to eat and rest and watch some Jeremy Brett Sherlock Holmes on Netflix.

Thursday, November 11, 2010

It's Official.


I just spoke with Dr. Crane's office.

He took a lump of tissue out of my head that was 3.5 by 4 cm for what turned out to be a half-centimeter, low-grade (confirmed by surgical pathology, hooray!) tumor. The margins were clear. I will not need radiation, only follow-up from here on out to confirm no recurrence. Recurrence is rare with these types of tumors, especially when they're confirmed low-grade. Call it ten to fifteen percent.

Thank God.

I'll have a CT scan in January, then follow-up scans at intervals to make sure that nothing's come back.

Ten-year survival rate here is 95%.

The last bit of anxiousness just unknotted itself from the middle of my chest. For the first time in what feels like a very long time, I am crying happy, thankful tears rather than lonely, frightened ones.

Thank you all for being behind me during this.

Wednesday, November 10, 2010

It's Wednesday.

xkcd: "Mutual"

Tuesday, November 09, 2010

"It's a Rygellian Palate-Perforator," snickered K'Plakgh, evilly. "One minute in your mouth...

...and you're no. Longer. Talking. Like. JAMES. T. KIRK!!!"

(*cue evil Klingon laughter*)

"I'm not even Canadian. What the heck is he talking about?"

Rygellian Palate-Perforator, about to crawl away.

R.P-P. from side, I guess.

Yeah, that was the left side. This is the operative, or right, side. Poor Dr. DDS was gobsmacked at how much space there was in my head (shaddup). Which is why this post has a Star Trek theme. "The Inside of Jo's Head, or, SPACE..."

One dead Rygellian Palate-Perforator. The blue stuff you see is part of the modifications made to this obturator the first time it was modified.

And, on a brighter, non-cancery note,

Look at this. Just LOOK at this.

That is Anna from Door Sixteen, looking amazing in a color of lipstick/nail polish that I have always wanted to wear but am banned from by virtue of being a freckle-faced redhead with blue eyes.


If you go to MAC or Sephora and you've got my coloring and you try on that color of lipstick? A huge claw comes down out of the ceiling, like in one of those stuffed-animal games, and grabs you and throws you out in the street.

I think it's the same claw that comes down and grabs you if you're in Hot Topic and you're over 35.

But Anna looks amazing. And, as pale and wan as I'm feeling right now, I really envy her.

Well, no wonder I feel like shit and I'm crying all the damn time.

Post Weight-Watchers weight, achieved after five months of careful Points counting and attention to nutrition: 171.5 lbs. (20 lbs down from original weight)

Pre-surgery weight, after I'd gone off WW and eaten ALL THE THINGS in preparation for I-didn't-know-what at the time: 190.0 lbs.

Weight on day of surgery, October 20th, at 5 am after having been NPO all night: 189.4 lbs.

Weight today, November 9th, at 1730 pm, after two meals and a slice of cake friend Adam brought:

170 lbs.

I still have 20 to 30 more pounds to go before I'm even in spitting distance of my "ideal body weight", but I think it might be time to, you know, try to arrest this free-fall and turn it more into a slide.

Happy Birthday, Carl.

This story never fails to make me cry like a baby.

Monday, November 08, 2010

Obturator update, and insight.

Dr. DDS saw me today for what is Surgical Obturator Re-fit Number...uh, three? Yeah. Three.

Just so that we're all perfectly clear on this, I will eventually move from the surgical obturator to what's called an "interim" one, and then, in about a year, to a "permanent" obturator. The function of this particular widget is not only (I found out today) to keep me from schnozzing stuff and make me intelligible when I speak, but also to help remodel the tissue in the...well, whatever cavity that is now. Oral cavity, still? Maybe.

Anyway, this surgical obturator is also supposed to help remodel healing tissue as it heals. If I'm to wear anything practicable, the muscles in my mouth and throat are going to have to learn to deal with something that's always there, and the tissue surrounding that *thing* will have to get used to it.

Some of what's in store for me today became clear when I popped the newest obturator out of place simply by swallowing. Turns out my tongue is a little too strong for your usual obturator molding. Who knew? (Don't answer that.)

I also had a nifty little insight that was brought about by talking to Nurse Ames and Beloved Sister and Friend Pens, among other things.

This has been a hard week. I'm not going to lie to you: since last Tuesday, I have cried every day. Some days I've barely gotten out of bed. I've been alternately barely functioning and not functioning at all, filled with hopelessness and self-loathing and wishing everything were different.

I realized part of why that was today: My last clear memory, my last clear, day-long memory, is of the Monday before my surgery. Thanks to the wonders of modern drugs, I have spotty amnesia from Monday night on, and feel totally disconnected to what I do remember of my recovery time after surgery.

So, basically, I woke up a week ago and it was like waking up immediately after surgery, except I was all alone, and I felt okay. Except for the whole missing-bits part, and the now-what part, and the survivor-guilt part, and the body-image-fuckup part.

I remember going to the grocery store on Tuesday, and having a really weird time there. I remember clearly sitting and praying with Ginny The Inappropriate Chaplain in the preop holding area, with my mom and sister and Pens there, and having argued with her that that was breaking the rules, that there were too many people in there. I remember riding to OR 2 on the gurney, and having a nice conversation with the nurse who was pushing me. I remember sliding from the gurney to the OR bed and being strapped in and joking with everybody.

I remember waking up to the most gorgeous arrangement of pink stock and roses and carnations, and seeing my boss at the end of my bed in post-op, and texting the Brother In Beer that everything was well, it was all done, and by the way, while I was under the influence of Dilaudid, would he marry me?

I remember how good iced tea tasted when I dribbled it down my throat that night, using a straw to swallow about a dribbled cc at a time. I remember seeing the doctor and reassuring him that I was well enough to go home.

After that, things kind of fade. And I woke up on Tuesday and was alone, and hungry, and I felt okay, except there was this *thing* that, I noticed suddenly, wasn't helping me talk very well.

You've seen the rest.

I was going to spend the evening taking pictures of The Cavity and the obturator, so you all could see what's what, but I've decided instead to watch "Blazing Saddles" and eat leftover quiche.