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.

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.

'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...

Dear 2010...

Kiss. My Fucking. Ass.




Or, rather, I guess, kiss my punctured lumbar...

...no, doesn't have the same ring to it, huh?

That may be the last LIVE! DIRECT FROM HELL! THIS IS SPINAL TAP! of the treatment. Can't be sure, but maybe.

Let's just cut the verbal hooey and get down to it. It has been a rough year. A year I did not know I had the ability--the humanity--to experience, much less survive. A year that has taken me lower than I have ever been: in body, in mind, in psyche, in blood pressure.

A year that I could not emerge from without the love and care of my wife. And my family, my friends, and pretty much all dogs.

I have forgotten more pain in the last eight months than I may have felt up to then. Maybe not, but it's close.

I have railed against the horrors that have already left me, because I am a performer and a human, and I want to be able to tell those tales, and I want proof that I was there.

I know that, somewhere in the future, I will find myself staring in the mirror or looking at a view or speeding or digging or kissing or running--and I may find that I do not have the tied-to-the-mast hold on all this agony that I should. The appreciation hewn into my marrow; the knowledge of how precious every tinkling laugh and dribbling snot really is.

If this pain--this jagged skinny valley with false sunrises and weeping winds--is not a lesson, than what the hell is it for?

What the hell is it for?

I am at a threshold. Today I feel like I got backed over by a garbage truck, but I know where I am headed. Though I need a week or two to recover, my initial chemo ended two days ago. Ended. Now we go on to maintenance.

Maintenance lasts years. Maintenance is hopping from one mossy stone to another, holding flaming shish kebabs of hope and juggling rusty blades of optimism. But it is the next stage. The next waypoint to putting this behind me. Behind us.

And so, there's no clever or original way out of this...

I just have to say

that I am thankful.

And that I have hope.


I am not beaten.
I am broken.
The difference is delicious.

This. Is the face.



Of Victory. Happy New Year.

-Holter

The gift that keeps on giving

It is a fine Christmas morning, and we go back into the hospital for more poison tomorrow; about as concise a metaphor for the human condition as I can imagine--a little ying, a little yang.

New York city has a fine dusting of cynicism, but no snow. N's mother, after a pleasant and calm christmas eve of food, films, and a few presents, has driven off to her next visit, and N and I will spend the day relaxing as we prepare, interspersing down-time with the gathering of cots and shower sandals; books, earphones, Ativan, and a partridge in a pear tree.

I was going to write a post about balance: the difficult with the glorious, the fear with the triumph. A post about not letting the cancer or the treatment ever own you. Don't let it become you. For every vein-ful of Drano, there's a walk with your mother and stepfather. For every gut-searing retch through pancreatitis, there's a quiet moment with your wife--knowing you will get through it, listing heavily toward each other like barges on the East River, sliding upstream, pushed by the tide.

But that post was based on photos, and I lost the camera before downloading them all. A nice little human foible to teach yet another lesson in flexibility--when your plans are fouled, improvise.

I was going to write this post a while ago, as it's been some time since the last post. But I gave myself three or four days to look for the camera. And then one more day to accept my failure. And now it is christmas morning.

Christmas has always been a shadow-and-light kind of day for me. Christmases growing up were sometimes transfer days, when I would shift from one parent to the other. It worked out well because Dad woke up early and Mom preferred to sleep in, so I would get a christmas morning at the crack of dawn, then pack up presents and self for the start of six months at the other house, where I would get a second christmas--positive and negative, just like real life. It wasn't really that rough--my expanded American multi-part family, good people and good parents all, got along fine and lived, at the farthest, within an hour of each other--and most of my life within a few miles. But still, with multiple presents came a sense of leave-taking and homecoming mingled in a grey Baltimore day: hugs hello, hugs goodbye.

And the religious aspect stuck in my craw. As I aged I came to see that not only did christmas delete or overlook the vast majority of the world's population, but that some dipshits, under the banner of Christianity, were using it as a way to overpower voices and cultures different from their own. If there was a Jesus, this would disgust him, of course; but power-hungry, ignorant ethnocentrists rarely think about stuff like that.

At the beginning it was basically a discomfort with some blonde guy in a white bathrobe telling me what to do from the sky, and his hippy-looking son walking around with his empathetic eyes, and this sense that I owed them something. I likely didn't know Patti Smith's "Jesus died for somebody's sins, but not mine' line until much later, but I would have dug it from the get-go. Plus, I'm just a punk-ass, trying to be different. Against the grain.

And that persists. In the above paragraphs I have written and rewritten, trying to use 'xmas' as a less religious way of naming the day. Then editing that out because it looked snotty and had a lesser music in the sentences. But going back one more time to make it lower-case. In a minute there is time for decisions and revisions which a minute will reverse (trapped again: Eliot was an anti-semite and pretty ruthless Christian, even while inventing modern poetry. A little ying, a little yang.)

So I do not believe in the ghost stories, but I love the time of year when people tend to come together, families (made and blood) gather, give, and maybe give thanks for what they have. I do not believe in the ghost stories, but believe in the feeling. I will bow out of trying to explain it and instead quote my wife, il miglior fabbro, who catches the moment I'm trying to draw in recalling her childhood:

From Christmas Eve to January Sixth, in the old Irish way, we lit a red candle for the Magi to follow. I pictured the Three Men of the East, looking like my father, wandering the desert, following red candles lit by Irish-Catholic women.
-You Have Given Me A Country

And I'll leave it at that. Enough about me: what do you think about me?

Physically, I'm peaking. It is that top of the climb in health and vitality, right before they kick out the stool. So I feel good.

In fact, I'm sore. The good sore, the kind of sore you get from physical activity. I have been running and sweating, swimming and moving, as much as possible since the fever, trying to claw back a little power and take advantage of the good week before the rattlesnake and the drips draw it back out again.

Because we go into the hospital tomorrow I am not in Baltimore this year for the annual Egg-nog run--where a wonderfully motley created family meet at our house and run, bike, or walk to another friend's house, then overeat and drink for a couple hours, before trotting off into the cold again for another few miles to another friend's house for more food and drink, and then plodding back to our place to collapse and enjoy each other's company. Run, eat, repeat.

So I cannot be there for the first time in a long time. But I can at least be in some semblance of shape, run those miles up here over the week. There in spirit, pounding pavement in reality.

My muscles ache from use. My legs are stiff from running. God, it feels good. I consider it a gift, and I am very thankful for it. And miles to go before I sleep.

(For anyone using this blog as some kind of how-to: steal your old self from the jaws of the treatment every second you can. Be an apple tree: when you cut me, I grow; in autumn cold, I bear fruit; I may be twisted and gnarled, but I'm still here. You want this thing to end, you're gonna have to cut me the hell down with a chainsaw. And if you burn me, I will still crackle and roar.)

The fever fell away, like scales from the eyes of those people--I forget who, maybe in the bible; not sure. As soon as it broke and they deemed me out of the woods, off we were sent, and it was like it never happened. There were a couple of days of fatigue and creakiness, I guess, but the speed with which the whole episode became memory was, and is, astonishing. Again--like the agony of pancreatitis and the deepest terrors and weakness--I am a little mad that I cannot completely hold the sensations and memories longer. As an actor I want everything, so I can use it later. As a human, I feel cheated: goddammit, I went through that; the least you can do is let me keep the merit badge.

And since the fever things have been uneventfully OK. A lot of voice-over work to make up for the week I lost to the hospital stay. A trip to PA to visit N's mom, a visit with N's dad to the Holiday Train Exhibit at the Botanical Garden, and N's mom's trip here for christmas eve. Miles running, hundreds of pages read into a microphone, meals and movies and quiet time with N. Hell, I almost felt normal a couple of time: which is, of course, terrifying.

But then a I got a mustache…in about forty minutes. As I have said, I've been achingly hairless, making a baby's ass look like Robin Williams' chest-carpet, for months. The HYPER CVAD seems specifically designed to keep you pumped full of the depilatory chemicals at just the right interval so that you don't even get a shadow of growth; smooth epidermal sailing, stretching to the horizon.

But not this week. Maybe the running, maybe Murphy's Law, maybe the random nature of everything. But one morning earlier this week I had full-grown half-millimeter blonde/white nodes, just above the center of my mouth. And the next morning they were joined by a dark points of whisker. Again, just above my lip.

It's like my follicles made a terrible error in judgment. They were at a poker game hosted by my brain and liver and, shitfaced on 'Vengeance'--a cocktail my brain invented which is a brutal and heady mix of V-8 and Vincristine that can really sneak up on you--barked out "Hey, no, wait, I got it!..What were we talking--oh yeah: totally! I mean, he already looks like a skinhead, right? So, so, I know! Let's give him his facial hair back, but, but, just, like, a little Hitler mustache! Right?! That's hilarious, right?!"

And my brain, corked out of my mind on Valtrex and chicken salad, said "Genius! Seriously, Skinhole, yer a fuckin' genius. We're doin' it!"

And so now I get to relive a puberty I did not have. The odd scarlet-pelt aside, my Norwegian Scottish Irish ancestors were not known for being terribly hirsute. Fairskinned and blonde, my facial hair woes were pretty translucent and not so much of a concern. Braces, sure. Cracky voice lower than everyone else's, you bet. Labial shadowing--not so much. Puberty wasn't all that horrid for me, really.

Payback's a bitch, huh? So now--when I look back at the sprouting pre-manly hedgerows of intermittent stalks and willows on the Eagle Scout who Henry and I used to call "Eyelash Mustache" as we cowered in fear of his bigness and meanness, his burgeoning acne and likely pubic hair--I have empathy.

Not a lot, but still…some.

So one morning I shaved. Electric razor in the predawn light before I went to the gym. And razor-razor that evening in the shower. Four short passes over the spot, then a pathetically non-resistant swipe across the rest of my face for old time's sake: pushing a bar of butter across a searing hot teflon pan would have garnered more friction. It was like I was shaving a big pink marble.

And tomorrow we return, for what hopefully (and hope is, of course, terrifying) the last time.

Not really, because even on maintenance there are chemo stints somewhere near months six and eleven.

But for now, and as far as the 'initial chemotherapy' and the Drs are concerned, that's it.

One and done. On to Maintenance. You've made it. Welcome back.

That's scary even to write. I feel like a dog creeping toward an owner who just kicked him. Like Scrooge future-looking at Tiny Tim's empty stool by the hearth. I'll believe it when I see it.

There will be this stint, and then recovery, and then there should follow another bone-marrow biopsy; another stealing of the soul. The results of that will, as always, be everything. And we'll go from there.

I'll have written more between then and now. I'll check in from the hospital, some time after tomorrow. I'll keep you posted.

Until then, merry christmas.

There are people reading this who have helped me, helped us, get through this. Whose time or interest or care have been a wind blowing us toward health and survival this whole time. I would name you, but it's not that long a list and the rest of you freeloading parasite douche-bags would probably get your namby-pamby feelings hurt.

So, instead, in the spirit of compassion and giving and reaching out instead of in, this christmas N and I have made a donation in honor of everyone to The McKim Center in Baltimore.

The Thrill of Victory and the Agony of D'fever

This is how you sleep in a hospital. Plugs to block the beeps, bleats, whirrs, and squeaking crocs. Bandanna across the eyes to keep out as much of the permanent lighting--growing dawn if you haven't slept, or piercing top-light when they come in to change, adjust, check, prod, remove, or verify something.

But why, you might ask, does this photo appear here? A good two weeks almost since getting out, and a good two weeks at least before going back in?

Well, that's where the fever comes in, screaming (to lift a violent image from Judas Priest) for vengeance. The world is a damnable place.

After the Halford/Ozzy show, things were going along just fine. I was tired but improving, counts responding as they tended to. I get a couple fake-OK days before the bottom drops out, and usually by then I still just need to be careful and take it easy and then the Neulasta catches up to the damage and I start a slow climb back to OK enough to--ta dah!--get hit again.

Mom and Jim were up for last weekend and we took a nice long cold walk to the Little Red Lighthouse that stands at the river's edge beneath the George Washington Bridge. A good four miles total from subway to subway, I would say.

After they left I went to the gym and did a little chemathlon: a mile on foot, 20 super-easy minutes on the bike, 20 laps. Came home tired--N said I looked too tired--but that was about it.

Monday is all day at the clinic: White count down to .2 and I need blood and platelets, so had to postpone a job; but that's how it goes these days and the employer was OK with it.

Tuesday I started the first day of a new audiobook, meeting a new director and new engineer at a publishing house I hope to work for again. That day went well; I got a lot of pages read and things seemed fine.

On the way home I feel a chill--which makes sense because it is in the high 20's and blowin' like a bitch out there.

As soon as I get home I take a hot shower to warm up--which should have been a signal flare, right there.

After the shower I just kind of lay about, saying I was beat but didn't want to sleep because if I went to bed at 6:30 I would get up at 3am and have a horrible Zombie dawn, padding around the apartment thinking about nothing other than the fact that I wanted to sleep.

N, smarter and more observant, as is her wont, suggests maybe we take my temperature.

Except she has a superstition that if I see the results it will turn out better. So she holds the fancy-schmancy unit we bought because we saw the hospital staff using them and figured, hell, if your temperature is this important, this a a perfectly good hundred bucks spent (and we were right). She slips the protective one-use sleeve over the temp probe, puts it under my tongue, and then turns the hand-held unit to face me, so I can watch the little cursor spin and spin and spin until...

101.9

Oh, hell.

Just for the record, 100.5 is the supposed 'go to the ER' number. But we learned after the second HYPER CVAD round that Neulasta makes me run a little hot and 100.5, while unpleasant, would be more of a 'call the clinic or service or whomever, calm down, and take your temp again an hour later.'

We waited fifteen minutes (N unknowingly draining all the humour from one of the few funny moments I ever had from the handful of times I tried weed when she yelled in anguish "it's been 6:13 for way too long!") and took it again.

101.9.

Fuck. Now I'm scared, and N is existing in this hard-to-watch state of fear, exhaustion, control, planning, preparation, despair, and worry. I think she kinda lives that way a lot, but the rubber-meets-the-road moments like this are when you can really see it. This will not be the first time I apologize to her, as we gather together a night's worth of stuff, my meds, the essentials we keep near the door for just such an occasion.

We've had a fifty dollar bill under a magnet next to an ever-updated list of the meds I am 'currently' on. And, for some reason, we never use it. It it grab-fast cab fare, specifically set aside so that it can be manhandled as fast as need be when the frantic 'OK get to a hospital right now!' moment finally comes. But we never use it. We use the money in our wallets, money laying around somewhere else in the apartment, the ATM, anything but that money magneted there for that purpose.

And I think it because grabbing the 'emergency' fifty is calling it an emergency, and that's just too scary. There's already enough going wrong every day; adding that kind of stress on top just isn't worth the four extra minutes it might take to ascertain where cab fare to the Upper East will come from.

It takes 10 minutes or so to get gathered, and we put in a call to the Cancer Floor because the Drs offices are closed and we will likely know one of the people there. It is 7 or so, during shift change, so why not?

We get the redheaded Norwegian shipbuilder with whom we've had many a great chat--she loves the night shift because she got into this field to work with patients, not Drs [the logic is so inescapable I have since wondered how day-shifts stay populated].

We take my temp again as we call, so we can tell her it is...

99.4

Well, shit. Now what do we do? 99.4, while high, is well within the Neulasta range from two months ago, and that cleared up on its own.

But there were two 101.9s, and the PA on the phone would clearly prefer that we get looked at. So it is settled. My Echinacea tea will just have to steep overnight: we're off.

Traffic is mediocre, but I am a mess. I am crying and apologizing to N. All I can feel--as we put little micro-lives into ever-smaller places for our stuff (Nod to Carlin for the framework and the genius to illuminate it), as we overturn one schedule after another, as we fall farther and farther away from what we thought our lives would be at this point--is bad. Bad husband, bad friend, bad person.

I have stolen a year of her life. Her second book is out, is great, and she should be freewheeling the country if not the globe basking in the reactions of people she urges to read it.

Instead we're in a cab on 3rd Avenue, on our way to the ER. Again.

She, of course, will have none of this. Tells me that bonding together as friends and partners involves the shitty and the sublime both. That she would still rather be with me, even right now, as we dig through our pockets for the 19 bucks it took to get us to the City-state.

She's right--shocker--and I am feeling self-pity to mask the fear that this is the one, the fever that turns septic and burns a hole in my weakened GI tract and swirls my battered innards down the drain of my pelvis and I am found dead, midriff blotchy and rank, on the cold paving stones between the cab stand and the ER.

Or not.

The PA from the Cancer Floor has told us to make sure and say at check-in that I am neutropenic (white count .2 the day before, so I'm pretty much dead-tropenic, for what it is worth) so that they can fast-track us at the ER.

Or not.

There seems to be some acknowledgment of my heightened, cancerous state, but not a lot. "A Charlie Brown Christmas" is blaring from all screens in the waiting room. I actually look forward to the moment when Linus steps on stage and recites a bible passage, bold and quiet. Even for the late sixties, or whenever it was first aired, that blunt, brief, grounded attempt to place Christmas somewhere other than the north pole always touched me, even as I eschewed the ghost stories and mind-control of most religious storytelling.

A local semi-celebrity news guy and his wife come in while we're waiting. She's recently given birth and is having issues.

They get treated exactly as we did. Which is a comfort. "That's nice, dear. Sit down."

I wonder if celebrities know that part of their service to society is as counterweights to the feeling that most of us are getting the shitty end of the stick. Nicke Nolte's horrid, startling mug shot goes a long way to making people who bemoan their lack of the best beauty products and personal chefs feel better. And that's nice.

N has taken it upon herself to get noticed--and, for the record, when she does that the unfortunate people on the other end of whatever it is she is attempting would best be served just doing what he wants, because she's gonna win; just face it, she's a tiny quiet slim wand of devastation. You lose.

We get noticed--shocker--and taken into a curtained area to be prepped and questioned etc. A nice NP from the Islands and his local counterpart were both incapable of getting a rattlesnake into my port, so I was poked and bled from many a spot up to then needle-free.

My low numbers did earn us a closed room in the ER, where we spent the first night. N, in a chair, with her coat on and her head on the edge of my bed, slept maybe twenty-five minutes that night: Tuesday.

Some time Wednesday we were brought upstairs, but, because of the packed Cancer Floor that kept us downstairs last night, we end up on the Geriatric wing that abuts the Cancer Floor. Our roommate turned one hundred one the day before, and he is getting over the flu. And coughing. Sharp as a tack, but coughing, hacking.

I had to cancel pretty much the entire week of work, which will either be a setback or a loss of work--can't know until I get out and am available if they will still want to use me.

The fever is horrid. Awful. In many ways worse than just about anything else I have gone through with this. Knocked down, screaming headache for days, no desire to eat or drink, heart averaging 100 beats per minute to keep up with the self-immolation, blood pressure dangling above dangerously low as I sweat out what little fluid is still in me.

There are times when I am hooked to lots and lots of drips.

There are time when three blankets can't stop the shivering.

There are times when N and a nurse are trying to help me find places for all the cold-packs they want me to push up against the spots where blood flows. Side of the neck, behind the knee, in the armpit, between the thighs.

The one under the bandanna against my bald head hurts the most. But I guess it does the job.

N and I miss a wonderful Christmas Jazz concert by a colleague from the union; a calm and musical date we were both very excited about.

We miss my agent's birthday party, a celebration of his aged-ness and universally-beloved-ness we were both sad to have to watch float by without us.

Time creases and folds, sleep is broken. Sweat, chill, languish, sweat, burn, chill.

Then it ends. Supposedly the last time I spiked a fever was yesterday (Thursday) mid-morning, which means they think I can go home tomorrow.

The Chief Dr came by last night, and this episode may or may not effect when we come back in for the last hit. Too soon to tell.

But that's what you get. That's what you get for thinking it was going well, thinking about Maintenance, thinking about what's next. Planning for trips, saying things like 'When I feel better we'll..."

That's what you friggin' get. You get a fever. And that is more than enough to drag your eyes right back to the little piece of road right in front of you.

Do not look left, do not look right, do not nod off, do not day dream.

Left foot, right foot, repeat.

The metal god and the prince of darkness played the garden last night and all I got was a crummy tee shirt.

Well, actually, N got the shirt, and it wasn't crummy. A nice girl-cut Ozzy tee in white and black. Part of the problem with being a fan of the same music for so long is that, to some extent, I already have all the t-shirts.

OK, back up.

We got out of the hospital Monday at a very respectable hour, as the Drs and the nursing staff were very on top of their game. Home in time to get dinner and go to bed with little drama. A much better stint than the last, and one that bucks me up for the last one a month or so hence.

The next day, because Murphy is the One True Law and Scheduling is His Prophet, the boiler in our building was being replaced.

Of course, a new boiler is significantly better than the current state of 'hey, does this water seem hot to y--Oh Holy Christ I Just flash-cooked 40% of the skin off my thumb!!!'

But still, less than twelve hours out of the city-state--numbers plummeting like any hope that the tea party candidates have even the shed skin of a clue as to how to help the country heal--and the specter of bucket showers and toilets that won't refill has us heading uptown to the apartment of a colleague and friend of N's whose generosity is matched only by her view of the Hudson. So our plan is to go to the temporary residence after the clinic, and, to pack as light as possible, I figure I will wear what I am wearing to the concert that night throughout the day--less to schlep in my backpack, right?

At the clinic I get the Neulasta shot, having pre-medicated with the Claritin, as has become the norm.

And I am in leather pants. Which I can safely say are not found in great abundance in the leukemia waiting room at New York Presbyterian Hospital Weill Cornell Medical Center. Wigs; hats that stay on indoors; huge splotchy bruises, sure. Leather pants...not so much.

I'm gonna knock 'em dead.

But my thunder is duly stolen by the bloodletter. The lovely and wonderful young woman who has been successfully--for the most part--drawing my blood, and whose steadily, happily growing belly has been one of the few way-posts against which I have been able to mark time passing, has outdone me. She arrived for work as on any other day, but by the time I was there for her sure-handed rattlesnake ministrations, she was three centimeters dilated and eighty-five per cent effaced.

Which, of course, means fuck-all to me.

And most everyone else, too, it turns out. It was humorously unnerving to see a flotilla of white coats--enough Drs to keep the explosively misbehaving lymphoblasts and self-hating marrow of dozens of people healthy, if not recovering, for years--wandering around the hallways of the leukemia wing like so many tipsy swans trying to score stale bread off the tourists:

'OK, so the cervix is eighty...'

'What was she wearing?'

'no, dilation is the cervix. Effacement refers to--'

'Can you self-dilate? I heard about this travel-nurse from Calgary--'

'she texted me like ten minutes ago. I think she's OK, but...'

'...'

You know what? I wish her well: new life trumps age like dogs trump humans, and so her and her pre-person would be at the top of my prayers if I believed the ghost stories, and I am more than happy to give way to her drama.

The only downside is that, because the assumption is that I will not need blood or platelets so soon after a stint, I have not been assigned a chemo nurse. So there's nobody to access my port. And, since I probably won't need anything injected into my system save the Neulasta, which is a stand-alone shot anyway, there's not a lot to be said for accessing me in the first place.

So it is off to the IV nurse, where I get the vein on the back of my hand popped into for my blood work. The IV nurse has worked with my Drs before and so draws a bit more than she needs to, which turns out to be prescient, as they want to get me pre-typed for what will almost certainly be at least platelets on the Friday visit.

All well and good. And I am gone. And the day crawls by with some errands and getting to stand and enjoy the lovely panorama of New Jersey (yes, go ahead and make your own little oxymoron/Garden State/What Exit? joke in there if you want, but it really looks nice from a few stories up and a river away).

And finally the hour draws near and N and I hie ourselves to Madison Square Garden, which is not square, is not near Madison, and could only be called a garden if hockey players' teeth that rolled into the Zamboni hopper fermented into some rogue form of mushroom.

We got there early because Halford was opening for Ozzy. I will not go into it, as I am sure some of you are still reeling from the Ronnie James Dio essay of a few months back, but Rob Halford is the lead singer of Judas Priest. He often records and tours on his own, most recently with a band called--in the interests of not confusing people
who have been banging heir heads up and down vigorously since 1983's Screaming For Vengeance at the very least--Halford.


If Judas Priest were touring, they could as likely headline the garden, though they tend to prefer Jones Beach Amphitheater, where you can watch the laser lights, the smoke machines, the steel-framed god-like machines, and the dusk over the Atlantic all at once.

But when Halford tours alone he has to take a second seat to more established acts.

No matter. I like Ozzy. And N fuckin' loves Ozzy. Sure, some of his music, and certainly his social conscience. But mainly his attitude. N and Ozzy are the only two people I have ever seen over eight years old who have, with utter conviction and a palpable belief that they will be listened to, told the sea to stop rushing at them. Ozzy on an episode of his reality TV show; N every time we go to the beach. They share a joyous indignation at the hugeness of certain aspects of life, and an equally elemental physicality when faced with things that delight them. Ozzy clapping and roaring and egging on the crowd bears a spiritual and oddly physical resemblance to N watching a TV show about dogs, learning to snorkel, or simply observing pigeons.

Oh, also, Halford is as gay as the day is long. I mean gay like Rock Hudson's slacks, and N is a hag of the highest order. While Halford only officially came out in the mid nineties, most of metal knew it long before that. Henry and I even dragged a gay roommate of his from NYU to a Priest show as portable gay-dar; we were pleased to have our hypothesis proven when, during some less-than-metal dance steps during 'Turbo Lover,' said gay divining rod piped in with 'Oh yeah. He's stepping. He's stepping.'

So we both had a blast. I tried very very hard to not scream and roar and howl and smash my beaten self about, and I did an OK job. One day out from chemo, I have to try and see the long view, right? At some point either near or during Ozzy's inquisitional portrait of British pseudo-satanist Alistair Crowley, I found myself crying.

I was in my body. In my body in a way I had not been for weeks, if not months. Swimming is glorious and freeing, running the 5K was a challenge and a triumph, chemathlons are little victories I hold very dear to my hemoglobin-starved heart.

But standing in the too-narrow space in front of an arena seat, leathered left leg straight for support and leathered right leg jacking down and downward, down into the floor, the cement rebound through your heel coursing straight back up your rigid body, rattling the prayer-wheel and Thor's hammer necklaces bouncing against your
out-of-shape chest; arms tensed always for balance and force, music talking to atrophied muscle and not bothering to clue in the mind, fist banging against right pocket, jangling the steel and rubber bracelets crowding your right wrist, left fingers tracing guitar notes as they fly by, and your head, your head bouncing on your tense but able neck, bouncing with a kick drum you can feel in your chest with more force that the straining heartbeats that have thumped you to sleep for so many long, quiet, fear-torn nights.

It's not much, and to most people it probably looks like some nimrod flopping around to loud music like a trout on a dock. But it is a physical interaction with a joyously violent music that has been of great value and solace to me for most of the years of my life. And--weakened and therefore dialed-back for my own safety and the piece of mind of the loved one hooting and cheering next to me--it was still a form of meditation, a secular litany and, most important, the driving of a stake into the ground; a stake that is me, rooted, jouncing, jangling, overwhelmed, full from the inside, with music.

Alive.