Wednesday, January 26, 2011

If I had eyebrows, I could hide in plain sight.



First off: sorry.

I think it's a good indicator of how long it has been since my last post that I almost couldn't remember the password to get in here and write this one.

I have heard from at least three people that an absence this long, while they hope it means all is well, is also worrisome.

Ah yes, the whole he-might-be-dead thing. Valid. Very valid.

So, sorry.

To quote Gary Gnu:

"No Gnus is good Gnus."

Not sure how many of you remember The Great Space Coaster, a likely very derivative kid's show that must have aired in the opening moments of the 80s. I am going Google-less here, so any facts I get wrong are my own. I think that one of Ray Charles' sons was on it. The intro ended with the human stars of the show sliding into the main set on what, even to an eight-year-old, was obviously only about six feet of roller-coaster track. They were seated in an only-barely-reworked roller-coaster car that was, I assume, the Space Coaster in question. And--again even as an eight-year-old--I remember very clearly thinking that a few guys must have just pushed that damn thing backwards up the six feet of track and then leaped out of the way before the camera rolled to capture the cast's 're-entry.'

This harmless confection also had at least two puppets, and possibly more. One was a female bird of some kind that lived in a tree. For some reason I actually get sort of uncomfortable thinking about, I have a vivid, vivid, and almost total recollection of this pink bird-puppet interviewing Marvin Hamlisch, and I think he sang 'One Singular Sensation' to her, or with her, or something.

[Editor's Note: There was an 'I'm gay, no I'm not' joke here, but I just took it out. I couldn't find a way to leave it in without it being at least a little mean-spirited, and that wasn't the point. It never is.]

The other puppet was Gary Gnu, who was...wait for it...a Gnu.

He was the host of "Gary Gnu and the Gnu Zoo Review," I am pretty sure (remember, all you iPhone zealots and Google junkies, I am accessing solely my head for all this). And "No Gnus is good Gnus" was his catchphrase.

Of course, he reported new--sorry, Gnus stories, so he sort of screwed his own mantra, but never mind.

And I just this second also remembered Speed Reader (whose theme song was, literally, a few people probably corralled from the bagel pile at the craft-services table right before the first episode was shot, singing 'Speed Reader! Speed Reader!' over and over.

Speed Reader, possibly as a segment in the Gnus, would run in in super-high shorts with an eighth-inch inseam and a terry-cloth headband. He would 'warm up' his eyes by doing 'push-ups' which consisted of watching his finger as he moved it back and forth really fast in front of his face. Then he would grab a book, whip through it making 'oh' and 'well whaddaya know!?' ejaculations, and then set it aside and review it for us, the gawping public.

What the hell am I talking about?

OK, sorry. Long story short: I did not post mainly because things were pretty OK. Or, if not OK, not traumatic or of enough value to pop in and tell you all. At least in my opinion.

So, a short recap. Hold on tight:

The last Vincristine left a parting gift of constipation. Four days.

I spent four days playing a lovely and reflexive game of will-he-or-won't he? He didn't.

Then we met N's dad for dinner and I ate spicy Papdi Chaat.

Then N and I went to see Cracker. Camper van Beethoven opened, which is odd if you know the bands. It was a great show...

...and I had a steak. Dum da dum dum.

Not blaming dead cows or Indian food--as we have seen, this is all about ME EATING WHAT OR WHEN I SHOULD NOT.

So will-he-or-won't-he became oh-good-christ-please-can-he-stop?

That was three days or so, with a thirty-six hour stretch there in the middle that had everything one could ask for: calls to the Drs, calls to the hospital, the looming possibility of a trip to the ER (with the attendant quiet contemplation of what corner of a cab would be the best place to shit), bouts of weeping, sips of Gatorade, sports bottles of water spiked with Pedialyte, entire meals composed of three Saltines, and the popping of Immodium like they were Pez.

Wee!

Then, as abrupt as the Death Star's immolation of Alderon, it stoppped.

And stayed stopped for three or four more days. Then, as far as I know right now, things got back to normal...I think. I hope.

You think you're getting tired of this? It's my gut.

Since then it has been intensely bland food with mild increases in flavor and normalcy each day. As of right now, all is quiet on the rectal front (sorry; I had to).

But c'mon, really; this is my eighty-first post and pretty much the first time I've really talked about the, um, exit, if you will. So count yourselves lucky.

Oh, and the Ravens lost their playoff game to the Steelers. By enacting a genius game-plan lovingly referred to as "The Offense will completely fucking forget how to play football for the second half, and suck with such a colossal magnitude that four beavers with Down's Syndrome and a half-melted thermos could have beat them."

Luckily, the Jets were even worse the following week, so our utter and humiliating collapse has been forgotten by the rest of the country.

Go Packers.

OK, now to the present. Today was the Big Day. Bone Marrow Biopsy and the Start of Maintenance chemo. Whoo-hoo! Sort of.

My port is getting yanked in six days, by the same lovely Dr who put it in. He did not, however, like my suggestion that he make a vertical incision across the horizontal one he made when installing it, so that I would have an X, which I thought would be more interesting. He just kind of looked at me. For a long time.

So N and I thought today's access for bloodwork would be the last poke to the port, as it were.

Well, that was stupid.

The bloodwork turned up that I am anemic, which just means that the chemo has slowed the return of my hemoglobin to healthy levels. It will eventually get there--I have been slow to re-blood most months, according to N's records--but since Maintenance is also Chemo, just with a fun new name with an extra syllable, they are having me back tomorrow for two bags of blood as a bonus. Annoying, but not earth-shattering.

Hey, guess what? When your bone marrow is recovering and not cancer-addled and weak, biopsies hurt more!

Guess when you find that out?

Right after you groan like a bum some commuter has stepped on as the core-sample needle yanks a piece of your soul out.

Seriously, it hurt a lot more, and I wasn't ready for that. The deadening needle and the prep were all the same--though the Dr pulled my pants down further this time so I was mildly preoccupied with how much plumber-furrow his assistant was having to not look at. Then he went in with the gouge needle, or whatever it's called, and burrowed down into the meat, and it just goddamn hurt. Not the long, slow, sad, tormenting unease of the last one. No no: this was stabs of jesus-and-the-mary-chain-what-the-hell-are-you-doing!? This was "Hey, I have an idea: let's snip off my third toe with rusty garden shears: that would be more fun."

But just three stabs of that, and then it was over. I had to lie on my back for a while, and when the Novocaine wore off it was a lot worse than last time as well. I was limping coming off the subway, limp-hopping to get up the subway stairs, grinding my teeth at the pharmacy to pick up the Maintenance drugs, and when we got home it felt like I had one of those colored plastic Easter eggs in my left butt cheek, but instead of jelly beans or Cadbury Cream eggs it was filled with ouch. It's a little better now, but I must be really healthy, because this is a LOT less fun.

Cancer care: the worse you feel, the better its working.

We get preliminary info on the marrow tomorrow, but the real facts from the molecular microscopic deep-doctoring stuff will be in ten days or so. I'll keep you posted.

I started on daily 100 mgs of Mercatopurine today, which is the same dosage I had to abandon months ago during the first, pediatric protocol when my liver started to not work so well and my pee turned red. I take that every day for two and a half years.

So that's fun.

The thinking is that I am on so much less of everything else, and I am so much further from the brutality of Induction, and I will be getting stronger and stronger, that it won't be an issue.

And they check your liver function with the monthly bloodwork and change the dosage if need be.

Once a week I take fifteen tiny pills, 2.5mgs each, of Methotrexate--the same stuff that was in the syringe during most of the forays into my spinal column.

But a lower dose, and only once a week. We've chosen Mondays, because they suck anyway.

Once a month I get to go back to the clinic for (from Feb 2 on out non-port-inserted) 2mgs of Vincristine dripped to the vein, followed by four days of Prednisone.

The pred, the pred! Will I never be free?

I stay on the Dapsone and the Valtrex throughout as well.

I have weaned off the Ativan, hopefully never to return. I just smiled typing that: it is like finally shrugging off a backpack full of bricks that whisper 'weakling.'

I will stop the Remeron in a week. I still take the super-Lipitor morning and evening, but hope to ditch that as well once I see the cardiologist.

In about three months they'll tear out some more marrow. In about six months they'll throw me back to the wolves of HYPER CVAD for one pass, and then again about five months after that.

I have a list of races, tris, and relays spread out over the next eight months or so. Not too many, and not to be sprinted or attacked, but rather survived. But there they are. Stones across a torrent. Brass rings going round and round.

N is seeing some strength, some regular me, return. Some safety, some calm, a lowering of the threat level from Orange, or Red, or whatever was highest. It's a different kind of strain; watching the decay and regrowth, the fear and the progress. But in its own way just as caustic, and I'm glad she can look and see it lessening.

By the way, the government announced today that they will abandon the stupid-ass color-coded threat level thing pretty soon, since it's been stuck on whatever is worst since 9/11 anyway. Meanwhile, the Republicans running the House have already wasted our time and money with a theater-of-the-absurd Health-care repeal vote they knew was DOA, and are now complaining about the deficit while actively offering a huge steaming pile of fuck-all as an alternative. So nothing's changed out in the real world while we've been in Cancertown.

Something is ending. I will be on chemo until I am forty-one; I just have to get used to that. But the first assault, the Omaha and Utah beachheads, the Induction and torture of the last 8 months, starts to shrink in the rear-view mirror. A line is in the process of being crossed over, a long calendar entry marked 'chemo' is in the process of being crossed out. We're not out of the woods, but the undergrowth is thinning, and maybe, maybe I can see a path misting out of the deadfall and leaves.

But I still don't have any goddamn eyebrows.

Tuesday, January 11, 2011

Deep end




This photo is out of context. I just wanted the underwater imagery. I mean, c'mon, look at all that hair! Sheesh.

When I was a kid, I was kind of obsessed with the bottom of the pool. I was a water-mad little bastard from as far back as I can remember--pleasantly humiliating speedo-clad childhood photos still stand as proof. I would swim in anything, dive off anything, splash through anything. I think I got a lot of skin ailments and rashes and stuff because of that tendency, but I wouldn't change a thing.

The bottom of the pool: man, that was the shit. I don't remember the first time I got a sense of being in deep water, but it was an enormous sensation. The weight of the water: fascinating.

We used to go swimming in the Gunpowder River downstream from Prettyboy Dam. The swimming hole had a ridge of rocks underwater, along the line of a long-fallen-in bridge. And the backed-up water hitting those rocks may have been my first experience of heavy space. It was calm enough that I could splash there as a four or five year old or whatever, but the water was high enough that I could kind of dunk myself and grab at the rocky bottom or just float there. Farther under the surface than a bathtub, the water was actually a thing, a medium to travel through, an animal walking around you.

And when I got a little older and actually went to pools, I immediately spent as much time as I could on the bottom. Once I had the skills to dive into the deep end, pull myself along the invisible ropes of water, and fight the air in my lungs trying to bring me back up, I just stayed there.

Hook a finger into the drain grate and languish on the bottom. Feel your ears crushing, squeaking. Feel the pressure crowd your sinuses, leaving little slithery sensations above your teeth, whispering amongst the tissues that maybe something was about to rupture.

Rutpure. God, what a fantastic, terrifying word for a nine-year-old. I was a pirate corpse hero ghost, wrapped in the sea's humongous thundering thoughts.

The bottom of the pool, the deep water: these were the places where you could go no further. That was what drew me. You knew from the pressure and the suffused thickness of the alien surroundings; you knew from everything tactile, that you were at a point you couldn't undercut. There was no beyond.

You were at the bottom of the pool.

No further down. No deeper. No freedom or safety to wiggle or flounce. It was just somehow really, really...serious.

I guess at a young enough age you have the joyous lightness and luck--for a while, anyway--to need something immensely structural, concrete, and physical to remind you that the world has limits, and danger, and consequence.

What a blissful gift: to misunderstand consequence to such an extent that slightly terrifying proof of it was actually fun. Alluring. Comforting.

I sure as shit didn't appreciate it when I had it. Beloved, breath-held dumbass; I just knew it felt powerful down there. Powerful because I was powerless.

The bottom of the pool, man. Wow.



Sigh.



I'm trying really hard to keep the light of those memories right now.

Because I'm scuttling across the floors of silent seas again.

And for the first time, and with a neck-snappingly different perspective, I hate it.

The bottom of the pool now is this reset button of chemo. This physical jail of repetitive weakness. This slack cage of skin I can't slough or rebuild.

Yet.

I get it, and I understand the doomed tone I am taking here, and I am not hurling myself over any cliffs. I am stumbling about a darkened stage with trite hand slapped against cliche forehead, bemoaning and declaiming and pissing and whingeing.

I get that. I know the physical and medical truths in front of me: I am doing well, progressing through the treatment, and just insanely insanely insanely antsy to get the maintenance phase started FOR CHRIST'S SAKE!

We are out of the hospital, safely home, going back into the clinic tomorrow for what so far seems like regular--boring even--bloodwork and maybe fluid top-off. The fever never came back, they kept an eye on me for a couple days, and then we were sent home. I have tried and tried to be more careful, eat less carrion, body-surf fewer steroid waves.

Mom and Jim were up for a visit, and the Ravens victory over the Chiefs, and it was good.

N and I attended a Pen American Center event the other night, as she is a new member of that fine institution: we were actually in Brooklyn, on purpose, which is in and of itself astonishing and possibly a good sign.

To quote Dave Mustaine of Megadeath:

"So far, so good, so what?"

This is what the therapist meant about maintenance being its own cruel beast and battle. I am so angry that every time I come home from the hospital I am back to where I was physically. Any exercise, any laps, and days out in the air where I felt like maybe I could take two steps at a time or, gulp, god forbid, trot across the street: it is all devoured by the toxins; killed by the cure.

And I have this tingling horizon of maintenance wherein the possibility--distinct and real--of slowly progressing, lifting off the bottom of the goddamn pool, exists.

It is maddening to not see or feel or sense that first inch of liftoff. Because it hasn't happened yet.

I got popped with the last Vincristine while we were in last week. I'm freshly chemoed, like a goose-bumped knave toddler just out of the bath and scrubbed clean, ready and new to the world. Starting with a clean slate.

The bottom of the goddamn pool.

It'll come. By this time tomorrow I will have a much better idea where I am in the recovery, which is the last thing before the start of maintenance: get over the last poison, then start being a recovering person--on less poison, able to move forward with less fear of backsliding, or regression, or relapse. N's near-perfect record-keeping shows us where my numbers likely are, and we know that all I have to do right now is not be a friggin' idiot and let the chemo pass through, and we'll be on our way in the right direction.

And it isn't cancer: I am not scared right now of cancer (which, if I were not so self-consumed and Narcissistically overwrought, would strike me as miraculous). It is a pure and simple physicality. Just the ability to feel like, if I had to--if my wife were threatened or some stroller were rolling into the crosswalk--I could perform as needed, and not just slump, or pass out, or otherhow fail.

It's stupid, I know. It is the next challenge, and I will rise to it and beat it like the others, only maybe with something learned from past travails. I will get my head around it. Get my hands around it, and wring it's friggin' little neck.

But just now--freshly weak and watching the unexpected and joyous facial hair growth of two weeks ago spill into my hot chocolate beneath the latest wave of pharmaceutical yumminess--I just feel futile, like a fat baby waving sausage arms at flies above his basinette.

Simple and human: you want something really badly. And you can't have it. Not yet, anyway.

'Almost, at times, the Fool.'

On the bottom of the goddamn pool.

Thursday, January 6, 2011

'Oops, I did it again...' -Britney



My therapist told me I might need a talisman, and that there is a triathlon in Baltimore in October I might check out, and that Maintenance would be it's own tricky and brutal passage of less actual physical/medical events, and that I should probably do more day-to-day posts to keep up with my mental and emotional states.

So that's what this post was going to be about.

But then I went against the better judgment of my wife and, right when I was farthest from a hospital stay and likely at the absolute nadir of my blood-count hoopla, I ate a medium-rare steak approximately the size of a broiled infant torso. I did so with a fervor and edginess brought on by the relatively long hangover the last HYPER CVAD steroids have had on me and the relative annoyance I was feeling with a union phone call I was also on while eating. So it could have been a lot prettier. Oh, and I ate all the escarole that came with it, and that might have just been garnish. Esacrole's tricky that way.

Now, granted, eating a huge steak is--for one part of my family--one's duty as an American and one of the few ways to guarantee that the world stays balanced on its axis. It is something near the top of my 'joy' list at all times, and something I will do again countless times before they burn me and spread some of my ashes in a Montana cattle pasture.

But I am in Month 9 of a chemo that has been rattling and sanding at my digestive tract like those automated scrubber robots that keep oil pipelines clean. I have thrown up and not eaten at greater levels since May of last year than the rest of my life combined--leaving out years 0-1 because then I think you're supposed to do that.

And this was a particularly large steak, for NY standards. It could have been a hint that the restaurant is called 'The Bastard' (in Italian to save face, but, still).

And, as I said, because of the vagaries of schedules, this was the longest stretch I had ever gone between leaving a chemo stint and returning for bloodwork and transfusions. We're looking at a full week on our own before the saving grace of a clinic visit, and here I am neck-humping red clods of cow down my gullet like a hyena at a carcass. I think I left my judgment in my other pants.

Long story short, we're in the hospital. N, as she has been every single day since this all began, is asleep on a cot next to me--a cot she has just described as being the least comfortable bed she has ever slept in 'and that includes the worst bed in communist China.' She once again took the brunt of last-second prep and travel that goes with a visit-turned-overnight-shenanigan.

I am trying to type quietly--using her fingers-near-each-key-and-terrifyingly-fast method as opposed to the rear-back-and-smack-the-keys-into-submission-fast-but-not-that-fast version on which I tend to rely. So far she's still predominantly sleeping, but I will end this soon so as not to push my luck. She had to go home to the apartment after we finally got a room on the cancer floor to get overnight gear, so is beat. I'm a tiring life companion: I think I always was, but this cancer shit's just a whole 'nother ball of poisoned wax.

The steak--and, really, the steak tipping the scales to the damage I was already suffering--kept me up two nights ago. I slept maybe an hour and a half. And when I got up I was supported by a screaming vacuum of space where my energy usually resided. Deep breaths to stand, deep breaths to get off the couch. One shoe tied, then rest, then tie the other. I--dancing bear to the end--scheduled a voice over job for first thing in the morning, on the way to the clinic, because I go back on the Decadron for this last Vincristine hit and so knew my voice would not hold out through the end of the day. Pragmatic, yes, but getting through three pages of semi-pumped-up TV show promo copy with only a handful of white blood cells patrolling my body did not a good morning jaunt make.

Then we got to the clinic, where I vaguely remember being in a few chairs with my head in my hands. I have a huge blocky Scandinavian head to begin with, and when I get to this level of weakness the payback for being able to bump into shit without hurting it seems inexplicably out of proportion. To quote David Bowie quoting Bernard Pomerance in 'The Elehpant Man:'

"I think my head is so big because it is so full of dreams"

Ah, well.

N must have--shocker--done most of the work, because my next memory is of being in a reclining chemo chair with the capable and friendly chemo nurse who not only has the honour of dating a Baltimore Ravens fan, but who was recently engaged to said Baltimore Ravens fan and had pictures of her ring on her iPhone.

I was bled and tested, and lo and behold, my white blood cell count was .1. That's .1, ladies and gentleman, which is followed by .0, at which point they start speaking Latin and throwing dirt on you. The super PA up here on the cancer ward corrected me, saying that 'below .1 there is a level, where there are a couple white cells out there somewhere, but, yeah, that's as low as we ever see it.'

Yay! I have excelled! Praise me! Pat my head! Gimme a cookie! Or a steak! (and now you see how we got into this trouble in the first place).

We stayed in the clinic most of the day, I got a bag of platelets and two bags of blood--I was so depleted it was the first time I have ever gotten double-blooded and not felt like a bubbled grey tick on a dog's neck.

And, of greater import, the Drs did not back down, and so I got my Vincristine and the first does of Decadron that mark the last official chemo of the treatment. As soon as I recover from this dive, I am a man on maintenance, no ifs, ands, or buts. It felt horrid-yet-gratifying to cross that final final line. They couldn't tranfuse me with blood while I was in a fever state, but chemo doesn't care, so I got all the bad crap first, and only when I cooled down a bit did I get the good stuff.

I have been afebrile (not feverish, but 'afrebrile' sounds cooler) the whole time we've been on the cancer floor, and the stomache pain has slowly (SLOWLY) but surely subsided to a point where now it is just background hum. The blood cultures they took when my fever spiked downstairs will be 24 hours old today around 2pm, and it is at that point that they either get a name and locale for what ailed you or decide (usually the case) that it was a general fever caused by only having two drunk white cells and their meth-head half-cousin Dougie to patrol your entire body.

Then they usually let you go. They may keep us for observation, but there were apparently 150 people in the ER last night and some other poor cancerous bastards who did not even make it up here to the cancer floor, where the specificity and quality of care is light-years ahead of whatever goes on down there in triage: there are privileges that come with being so immunodeficient that thinking about some else's snot can kill you.

Again, credit to Carlin : "You know that feeling, like wiping off snot...somebody ELSE'S!" and "AAAARGH" go the girls in class.

OK, I am writing too much because I feel human again. Whenever they release us it will be into a world of--granted, three more days of the super-roid decadron--recovery and maintenance.

Then I'll need to figure out that friggin talisman thing the therapist told me about. I love that word; it sounds so cool...