That bugger there in my hand is Augmentin. 875mgs per pill. The aforementioned bear turd. Two of those a day. Two Gemfibrozil, which are only slightly smaller, to make sure my blood doesn't turn to fry oil again. Two Diflucan, which are smaller but hexagonal and crumble into bitter powder with alacrity upon entering the mouth, to fend off any more fungi than I already have colonizing my mouth and throat. Five Mycelex lozenges, which are like half-sized Necco Wafers that only come in 'Dust' flavor, to kill the thrush I have gotten again on the back half of my tongue. One Valtrex and one Dapsone, the old stand-bys I have been taking every day forever.
I told somebody today that I don't really have to eat any more because I'm taking so many big pills that my medication is covering my caloric needs.
A day or so after the last post N, in her wisdom and thoughtfulness, saved me a lot of pain, fear, and unpleasantness.
As I have said before, when you are in the hospital they take your temperature a lot. A LOT. And if you are feverish, well then everything everyone does bends to that reality, and most of what takes place takes longer, has more side effects, and just, well, sucks.
I was feverish--oh lets say it, shall we: febrile!--when I came in, and stayed that way. And I felt it, to some extent.
But the temp readings they were getting were consistently around 102, 103. Now, I had been 103 with a Neutropenic fever a few months earlier--the whole old-person's-wing, ice-packs and no-blood-pressure party. And I had a distinct memory of what it felt like, how horrible it was. And N had a distinct memory of what I felt like, what level of heat could be felt washing off me as I steeped myself in my own juices. She was there the whole time, swapping ice packs as I roasted through them, piling on blankets until I broke through one wall of the cycle and threw them all off. She knew what that shit was like.
And this wasn't it. I was warm, I was even febrile, but I was not oxidizing at light-speed from within.
However, it's the hospital, and they take your temp, and they get their reading, and then everything goes according to that number.
Finally N suggested to one wonderful nurse that maybe the fact that it was the back of my mouth that was the source of every goddamn problem I was having, and that it was a raw and pustulent wound had something to do with the high readings.
She worked this angle over a couple of temp-takings, applying logic like body-blows and questions like jabs to the chin.
Finally the nurse, who agreed that I didn't seem as hot as the temps said, sought another opinion. He asked a more experienced nurse to check me. N met her in the hall after asking about the throat theory yet again. This led to the somewhat ludicrous and mildly thrilling experience of having one's wife stride into a room in which you lay in a bed saying "I have brought another woman to touch you."
OK, maybe the fever and the pain made it more of a thing for me, but still.
Anyway, this nurse laid hands upon me and also said "yeah, he's warm, but not 103 warm."
This led to the use of the axillary temp. After N destroyed the juiciness of her earlier quote by following it with "Do you think they'll do rectal instead?" we were told that I had enough stuff going wrong with me that they didn't think it was a great idea to stick anything up my ass.
Yay, cancer!
So the axillary reading is the armpit. And granted, it is not as specific or controlled or consistent as the mouth or the butt, but it does give one an idea.
And lo and behold, the readings between mouth and armpit (they changed probe covers) were consistently a good few degrees off.
This detective work and pursuit of her theory ensured that I would only be treated for the true fevers I was dealing with, that I would not be forced to get blood cultures drained into jars every day I was inside, and that I would be sent home when the vast majority of my body felt better, as opposed to most of my wracked carcass having to wait around for the sizzling boils and fissures of my agonized throat to come around.
It is a repeated truth to the point of motif by now, but I am thankful to her.
I have been home since Friday midday, but just barely. They kept me in a day longer than I wanted, but I am sure they're smarter about that crap than I am. I was released and came home and have a vague recollection of lying on the couch. And then it was Monday. Or maybe Tuesday.
Don't get me wrong, it is fantastic to be home. Fantastic to not get stabbed every few hours--I had been running out of arm real estate anyway, and have been enjoying the autumnal creep of needle-cluster bruises as they wash from blue to yellow to black. I still have lovely matching archipelagos of adhesive scattered about both lower arms from all the different dressings on all the different holes. I even have the fading red dots of top-of-hand-vein entries from the last day or so when they didn't have anywhere else to poke me.
And, you may have noticed, I am just the teeniest bit...shall we say...hairy.
Murphy's law being the only true god, I was of course at the absolute bottom of 6MP-induced, Dilauded-mitigated swallowing hell when it got going, so have not really been able to enjoy it at all until now. But I have hair. I won't catalog specific locales or amounts for fear of offending the censors ("Fuck the censors!" "Shut up." "You shut up, goat-rapist!""Seriously, shut up. Please.""Fine...Bitch."), but suffice to say the chemo effect I found most visibly undoing has gone the way of the dodo.
Mainly, it was the eyebrows and lashes. Getting those back has been a boon to the soul. I went back and looked at some pictures from the most depilated time a month and a half or so ago, and I can barely look at myself. I also had some steroid bloat that made the effect worse, but mainly just being that hairless all over, especially with the brows and lashes removing the sense of the eyes as the center of a human face, just made me look like such a...such a...patient.
It wasn't even so much about aesthetics. I mean, I'm as vain as the next guy--and the three vain guys who should have been next to him but stayed home to look at themselves in the mirror. But the fact that Leukemia and its treatment was going to rot me away and shred what I was had been something I had come to terms with. I could always look no further than how I felt: any weakness, any sense of being actively poisoned, any sluggishness, and I could get over the fact that I looked so little like the self I thought I saw when I looked at myself. Prepare a face to meet the faces that we meet, you know? But that last phase, when the brows and lashes fell off; then it just became medical.
I know two women who have Alopecia and are therefore hairless. Both are quite adept at the subtle but powerful use of eyeliner. Chicks can get away with that--I would just look like Ray Liotta after a propane stove accident. But I have a greater and deeper respect for people who, for whatever reason, walk the world without any fur. It ain't easy.
For me the next question is what the returning hair will look like. There seems to be pretty solid agreement that--and we're talking about on the skull now, you dirty monkeys--the first batch comes in somehow...different. You can see the grey or white in my beard, and there seems to be some of that on my head also, though it is still pretty short and so hard to tell. But I've met lots of people now whose first growth was just odd--curly when it had been straight, all one color when it had been varied, what have you. Agreement also seems to abound on your 'regular' hair coming back after that first bit has come and gone, so we'll see.
Of course, with the treatment plan the Drs have me on, I go back into a Hyper CVAD somewhere around August--six or so months out from main chemo--that will probably kill all the hair again. And then I get the other hunk of Hyper CVAD about five or six months after that and will likely go baby's-ass again. So at this point I am just sort of enjoying what's here. I haven't shaved because I still have a lingering fear that maybe this is all I get. The fear is fading a little. But only a little. However, today a pretty respectable portion of my tuna melt was still lingering near my mouth well after lunch, so it could be time for at least a trim.
I emailed my agency and said that, if they needed a meth-addled 'Winter's Bone" type for a commercial, I was their guy. Oddly enough, I didn't hear back--I feel like I see lunatic hollow-cheeked sparsely bearded maniacs selling sedans and bedroom suites all the time. OK, maybe just on Speed Channel.
Oh right: weight. I lost about a pound a day in the joint. Bottomed out at 151 when I got home, and have slowly worked my way to 152 since. The few days before and then the week in the hospital were all about not eating because swallowing just hurt too much. It is a mind-expanding experience when you get to a place where, even after a few days, even with your stomache whining and rolling and trying to eat itself, you are so in pain that it is a clear-cut and unequivocal elegant truth that you are not gonna eat. It isn't worth it. Screw it, I'll just waste away a few more days, because getting that tepid oatmeal down this throat is Not. Fucking. Worth it.
It has been strange, because for years and years I considered 150 my "Fighting Weight." The weight at which I looked best. Just barely too thin that the camera's extra ten didn't hurt me, that I had a nice visual line down the side of the face, through the jaw, and into the neck. That the strong-but-not-so-big muscles I did have looked good proportionally. That leather pants and a snug t-shirt was always pull-off-able.
Then I started running about five years ago, and started doing tris a few years after that, and I had to break from a belief I had had for a very long time (I've gained at max twenty-five pounds since senior year in high school, mainly because chicken legs and not much muscle always weigh the same).
But muscle weighs more than fat--which I didn't know--and so when the running started to add to my legs and the multi-sport started to add to my arms and chest, I would still look in the mirror and think I was in pretty good shape, that I was pretty close to what I would like, and the scale would read ten pounds more than I had washed my brain to accept.
It takes a long time to wear off. And, I'm an actor; a performing bear who will still, if caught off guard, do almost anything at all conceivable in nature if a few people will clap afterward. So when I stumbled onto the scale Saturday morning, back home, exhausted, torn down from the inside out, shit I can't pronounce growing in my throat, I looked down at the readout.
And the big red digitals said 151.5.
And a tiny version of me inside somewhere turned from practicing his Oscar acceptance speech and went "Nice! Slimming down, looking good!"
OK, onward. The quote at the top of this post comes from the ENT specialist we saw Monday after getting blood work that showed that I am sufficiently immuno-suppressed--not by chemo but by the infections I am fighting caused by getting dropped to such a low white count by too much 6MP--but that my numbers look to be recovering slowly. We went to the ENT because even the hardened cancer Drs had all taken to saying things like "Ewww" and "Oh my; I've never seen that" and "Well, that's gross" when looking down my throat with their little lights.
The ENT was quick and assured and poked and swabbed and sent another probe down my throat, and pronounced it all good...or moving toward good.
Since my living comes from vocal presentation, we'd been crazy worried that this throat thing would somehow damage my chords, but he--and every other Dr we talked to--said that the chords are a lot lower and that I can't talk as I usually do or control my voice yet simply because there's a colony of rotting fungal hooey all over my epiglottis and uvula getting in the way. When that heals, everything vocally should be fine.
He did add Epiglottitus to the Uvulitis I had already been diagnosed with...I have learned from the Medical Establishment that "...itis" is the Greek suffix meaning "You have seriously pissed off your..."
All the pills listed above are for the most part to keep killing whatever cooties, fungi, infections, and, I don't know, demonic toll-booth-attendants that have already taken root in the back of my mouth, as well as fending off the three or four foul vermin that haven't already settled into my soft palette for a wee bit of population-exploding chicanery.
As my white count rises and I start fighting off the "itis"es, and as the fistfuls of pills do their work, fresh and healthy tissue will grow underneath the yellowed, caked, roiling, yeasty whatsit currently lining my throat. The top, icky stuff, will die as it loses the battle...
"And some bits will turn necrotic and fall off."
Genius. Seriously, it is almost worth doing the time at Dr School--or whatever they call it--to be an ENT just so you could say that to people.
"And some bits will turn necrotic and fall off."
I mean, it has everything. I have already filed it away with the gruesome joy with which I looked at the charred bits of gristle on my port after they yanked it. And it also has the word "bits" in the middle, which is such a misplacedly friendly word. "Bits" of cracker fall on your cardigan during a Humanities Department picnic. "Bits" gambol coyly with "snippets" to make up memories and whatever percentage of song lyrics from the 80s we still remember.
And then there's "Necrotic." I mean, hell, do I even have to explain? What a great word. That words is like Dracula just took a shit in your soup. Fabulous.
And then just the whole concept that stuff that was at some point--recently, I would assume--me, will just fall off. Just fall the hell off.
"Pardon Pete, but where's your knee?"
"Damndest thing, Burt. Fell off."
"Crickey! Fell off, you say?"
"Must've. I've checked my knickers!" [Hearty laughter and slightly homophobic back-slapping ensues. Exeunt stage left]
What the ENT meant by that finely crafted and gorgeously spot-on verbal bunker-buster is that the fungal, super-infected, cakey white/yellow gunk that had outlined the cartography of my mouth and throat like the Ring of Fire and caused me just about as much pain as any other thing I have come across will--like the best scabs and some lucky boogers--die, dry up, lose their adhesion to the tissue underneath, and peel, fall, or cascade free of their moorings, possibly shouting a little in a fading Doppler effect like Wile E. Coyote on the way to the canyon floor.
Except! And this is my favorite part...I'll just swallow them. Yes! That's right, boys and girls; I am not gonna have any warning, and will as likely as not be asleep. So these flitters and fliers, these suiciding chips of rotting me, these 'bits,' will just land even further down my throat, and away they'll go, to meet up with the pills and the teriaki, the Apple Jacks and the tuna melt, somewhere behind and under the rainbow.
If that ain't healing thyself, then I don't know what is.
