Starting this--just some notes

how it all happened....

Ah, there it was again...the pain in the back right side of my mouth--an old wisdom tooth that had cracked and decayed quietly began sending out it's not so gentle F U's to my central nervous system. I sighed. I hate the dentist, yet there was no way I could avoid a visit with this problem weighing me down.

Yet of course I hesitated. Was it that bad? could I deal with it? I was busy, we're all busy, it was November and my birthday was coming up. My first trip to San Francisco was coming up--I was going to see my new boyfriend and make my stay in his apartment...yes, it could wait. 

Just before that trip, though, I found that my tongue looked whitish--wouldn't brush or scrape off. Oral thrush, I told myself. I went to a local store that specializes in homeopathic treatments for thrush--the causations for which are as diverse as stress, bad oral hygiene (gimp tooth qualifies here, I'd say) and, possibly, an inbalance in gut flora leading to a general bloom of yeastiness throughout the GI tract. 

In SF, I wandered around a beautiful city with a beautiful guy, careful to follow the dosing of the pills and tincture that came in the remedy--the hippie box, I called it. I'm about the furthest thing from a hippie in appearance (way more J Crew than Granola Dude), but I think, and I admit still do, that when you can invoke nature to fix a small problem, why not save a thousand dollars, antibiotics, and the nameless, faceless, factory-like US health care system?

It seemed to work at first--or did I tell myself the tongue was less white? better -- stronger -- healing.

On my return to Indiana and prior to another trip to SF fro Christmas, I had the troublesome wisdom tooth pulled, and the one next to it, that it had infected--and all hell broke loose. Suddenly my sinuses were screaming pain, drainage was like the Love Canal, the extraction sites ached. I reasoned that my neural network had experienced a blip in connectivity and was misfiring everywhere. My tongue began to swell a bit, and whiten again. Curses, Hippy Drugs!  I went to my doctor who agreed that it looked like thrush, a hard case of it. I swirled and spit Nystatin, Nystatin with Lidocaine, swallowed Nystatin...and little change. I began to sleep less, eat less, had to carefully maintain my hydrocodone and port it with me in case I ran up against its four hour time limit when--all effectual aid aside--the creepy throbbing mouth pain would begin again.

Let me just take a moment and say this: mouth pain is god awful. Frankly, I don't know where it ranks on the scale of various body pains, but surely it's significant. It can't be ignored, and frequently it can't be rationalized. And when the sinuses join in, and there's a fire bell going off from top to bottom, front to back, of the head--there's no thinking, no progress, no relief that seems at all possible. 

Through all of this...

my boyfriend, Scott, kept insisting that I had to see an ENT, or another sort of specialist, anyone, who could give me another perspective on what was going on. I finally gave in and did so, after a miserable Christmas in San Francisco. My tongue got bigger, whiter, painful. My mouth was jangling like an old style party line phone. Still I thought it was a combination of the nastiest thrush and a nervous system that had been boinked by the tooth extractions--and it wasn't what I wanted to think, it was just what seemed right. There may be a word "Empiricism" but that word covers a whole lot of sins--evidence can be manufactured in ways you don't suspect to support facts that truly aren't....you can talk yourself into believing in anything based on empirical evidence, regardless of the fact bog from which that evidence slithered and crawled.

I'll back out a bit and here and say that it didn't take the ENTs long to figure out this wasn't thrush, and it didn't take them very long to jump over to cancer, or to suggest that was the direction it was going--what took forever was just navigating the system of talking to one guy, who refers you to another, who can only see you after a week, who only knows a discrete unit of the problem, and wants you to see this and such fellow, who's at a conference in San Diego until the 10th--and can you wait?--that's the shit pile of the US system. Balkanization to a degree that clogs patients into a great big driving extravaganza, a car show of parking lots and forms! Always the same forms!  Always have to be filled out! Always the medical history! Always the same story! If you list that you once broke a bone, you should know where and when and how it was treated--in my case, the only prior surgery I'd had was in 1966, when I was 6, and had my tonsils out. You know what I remember from that? They fed me a shit ton of orange popsicles. That's what I remember because I could eat a shit ton of orange popsicles when I was six, sick or not.

I don't dwell on bad news often, or bad events--I try to learn and move because I think a moving ass is far harder for karma to kick. Motion, too, is a soothing experience whenever you've been stalled--by a personal tragedy, a break up or an illness. Get up, move. You will instantly feel better.

The upstream specialist ENT that I finally saw took about a minute to figure out that this was a tongue cancer and about a minute to arrange a surgical biopsy, and to his great credit, took a lot of time past those minutes to listen to my questions and answer them--even though by this time I would describe my speaking voice as Daffy Duck on ludes. My tongue is too big to allow my mouth to completely close, still white, but still definitely not thrush. No. This shit looks like cancer.

It is a pure buzzkill

to go from thinking a box of homeopathy sold in a hippie store would cure your ills to the gut wrenching realization that the system is now your hope. The system. The grinding inefficient health care system fronted by people a bit too friendly for the circumstances in which you find yourself. A system where an overwhelming number of women who don't appear to be fag hags are talking to you like you are a young gay boy they want to take out dancing for the first time. Very sweet, and even sometimes soothing, with a serious undertone of creepy. 

The system must have paperwork filled out. The system must have each question answered. The system must know factoids and opinions you possess of yourself written on pages that are as cheap looking as 1970's mimeographs. You must report your drug use! You will discuss your past and present conditions! (Even though you suspect one call to the NSF would straighten all of this out for anybody who cared to ask and would totally spare you the continued, duplicate, effort.)

You duplicate everything, and you seek opinions everywhere, and enter the circle at the same point at which you previously exited, making no progress and discerning no consensus. You have tests, which to know the results of, you often have to aggress against the lassitude and greed of the system to know you better than you know yourself--"oh, those results! I thought someone had given them to you!"  Uh, no, because you're the only one who has them....

Then too, at the center of the system, is the General Practitioner whom you've seen for x number of years, with whom everyone claims to desire a chat, and no one initiates one. For whom everyone claims to be preparing reports which your doctor will never get. To whom each test result is cc'd though it would be a shock for them to appear. 

This is the start

of something a couple of people have urged me to do--the boyfriend, because it is cathartic and useful and a former boyfriend, because I'll be bored on disability while I'm recovering and will need productive outlets--both of whom are correct, and motivated by love, and concern, and the desire we all share to see something good come from losing my tongue, perhaps my original jaw, probably some teeth, the ability to eat peanut butter from the jar, the taste that tells me liver is shit food to eat, the extraordinarily loud way I say sarcastic things about people, the fact that my voice carries through walls, the love I have for caramels, the idea that feeding tubes and trach tubes are just evidence of giving up, the horror at losing my hair, or burns on my face and throat from a hot fucked up tube of radiation, the idea that I'm invincible, which I am, but only in my dreams. 

This, my friends, is pure cancer buzzkill. I hope I can keep it up.