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.