Performing bear, nursed in captivity, released back into wild: immediately seeks a McDonalds and a Library.

Reintegration into non-leukemic society was always going to be, I knew...interesting. But now that it is happening in even the smallest tidbits, I am learning just how interesting. And tiring. And glorious. And tiring.

And, of course, everything's fleeting:

I'm back on the pred.
I got a nice needle-full of Vincristine yesterday, with a steroid chaser.
I leave in about twenty minutes to get a full-body eyeballing by a dermatologist to see what the "Drano In My Veins 2010!" tour has done to my skin. Good times.
I have the first 6MP--a demon of my own creation that tickles the fear nerves in my sleep and looms like a boil on the bridge of my nose whenever I am awake--to take Monday.

Wheee!

But first, an historical aside.

I'm a union guy. Have been for years, trained and informed by some of the best representatives of worker's rights and responsibilities in New York, one of the most organized cities in the country.

For some reason--I think the Scottish and Viking non-emotive stance on things--I have been able to bring a dispassionate passion (have fun with that one) to my efforts on behalf of working performers, specifically through working with the American Federation of Television and Radio Artists (AFTRA), an organization I am lucky enough to serve as president of the NY local. I have about 18,000 members assuming I will work for their best interests, and assuming I am the man for the job...please don't tell them anything bad if you know me. It's going very well so far--about six years.

Unions did not autogenerate from nothing: they came about because of a need for workers to be protected from employers whose zeal for profit and/or power won out over their desire to be fair humans. Not all employers have this problem, but there's a pretty close relationship between extreme profitability and extreme total-shithead-to-one's-fellow-humans-ness. That's a math term.

Unions are under attack now in this country like they have not been for many years. State governments who will never admit that their states are bankrupt partially because they are incredibly selfish and bad at their jobs have found that, behind an astonishingly under-informed--yet often meaningfully dedicated--Tea Party momentum, they can point to any number of 'factors' that seem like maybe they are dangerous to 'hard-working, red-blooded Americans,' which in the Tea Party case means more often than not a bunch of aging white people who have never had union protections, who are too old for the the new work force, and who are silently terrified of the generations of tolerant, ethnically diverse, and egalitarian millions who have followed behind them and who think that, what the hell, let's try and be good to everyone who's not a total schmuck, huh?

There's more to it than that, obviously, and a closer adherence to the Constitution is often a good way to rein in Government dipshititude, but unfortunately one of the core Tea Party tenets runs along the lines of "Let's get back to the good old days," which, if you ask just about any modern and informed scholar of American political history and demographics, carries an unspoken "when I was a kid we all looked alike, nobody had a funny name, I got a job out of high school that paid OK, and manwich and wonder bread were good enough for me, and if one more goddamn darkie takes my job (a job I would not do anymore because I'm above it) I'm gonna run one over with my truck."

This from a man who loves, I mean LOVES, trucks. And immigrants. Blackfoot and other First Peoples aside, every goddamn one of us has immigrant blood. Every goddamn one.

And there's more to the union side, as well. "First in, Last out" teacher's union-defended retirement/severance rules are an abomination, a system of cronyism as capable of ruining this country as bigotry and class-ism. While the teacher's can't just roll over and accept the government plan for new retirement/severance regulations because they are knee jerk in the other direction and give WAY too much power to administrators in an educational environment, they're still defending a system closer to Feudalism than anything else.

Regardless, in the vast majority of cases, a group of united workers forming a structure and bargaining collective through which they can protect themselves while promising their skills to help the profitability of their employer in exchange for their respectful and economically viable treatment is a good thing. A good goddamn thing.

And a lot of that, in this country, started today, a hundred years ago.

The Triangle Shirtwaist fire happened one century ago, right around now. One hundred forty six victims burned alive because their bosses didn't like that they took little breaks on the fire escape to escape (that's what the damn thing was called) their sweatshop existence for a few minutes. So the owners locked them in, and when they had a cigarette inside a building full of blouses hanging from the ceiling, inevitably a fire started.

With nowhere to go, locked in a burning hell or hurtling to the ground as the single accessible fire escape twisted and fell under their combined weight, one hundred twenty nine people--mostly women between the ages of sixteen and twenty-three, and mostly Jewish and Italian immigrants working to stay alive and support their families--died.

There is a grave in Brooklyn, a marker to a group of women who were never identified. Charred beyond recognition, killed, buried. Unknown.

Until recently, when their identities were discovered and their names added to the roll call of the dead that will be spoken in a few hours on the edge of Washington Square Park:

Lauletti, Adler, Evans, Rosin, Florin, Cammarata.

You know what that is? That's a list of Americans. Be proud of that. Or fuck off.


OK, back to Leukemia. Yay!

I've been out and about enough the last part of this no-chemo month to now attend auditions where everyone in the room has seen me recently and knows the general outline of where I am. Or has never seen me before, and doesn't give a shit because I look significantly more like I used to then I did a little while ago.

Which reminds of a phrase I memorized as a youth to confuse people at parties and impress them with my lingual skills:

'Man, I feel more like I do right now than I did twenty minutes ago, I'll tell you that much."

I don't know where it comes from, or who said it first, but it's fun to practice until you can just whip it off in a breezy manner and leave people cross-eyed as you walk away.

Anyway, I am now finding myself in rooms where nobody gives a rat's ass who I am or if I am not-dead. You know: the good old days.

When someone asks 'how are you?' I have to learn to not give the answer chock-full of phrases like "finally getting the numbers under control," and "what's an eight-day hopsital stay among friends?" and "...ran out of room on my arms for all the needles, ha ha ha ha ha!"

They wanted me to say "Fine, Dave, and how are you? You gettin' any?" and then go back to my book.

Which reminds me. Since last week I read the actor-with-leukemia book and his follow-up book that was more sort of life essays but still with the inescapable background of imminent premature murder-by-your-own-body.

I'm still gonna leave his name out because I didn't really like the books, so why fart in someone's face unless they ask really nice, right?

I mean, I am glad he didn't die, and I am glad he wrote the books, because I know well enough that I am not the only audience type and that the books hopefully helped and informed and gave succor to many many people.

It just wasn't for me, because his leukemia was twenty years before mine and in the medical word now that means our treatments had only the horrific outlines in common, and the minute specifics or treatment were different enough that I didn't 'learn' very much about my own case.

And because he is a different person who went about preparing for and surviving the treatment in a different way.

I noted to myself that it wasn't until page 183 or so that he described it as a 'war.'

Hmmm.

If I have to paginate my experiences, I think I, and we, were thinking in battle terminology--about strategy and enemies and slaughter and bloodshed and defiance and revolution and violence and perseverance and just fight fight fight goddmammit somewhere around page three. OK, sorry: page two.

I think his books are more for people outside the experience. Which is great. Happily, that makes up a much larger audience--and that's good because even I would not wish this physical debacle on much more than, say, a dozen or so people I can think of. The rest: may they be happy and healthy and buy books.

Buy N's first, but then go buy others to their hearts' content.

There are books 'for' the patient, the sufferer, the one under attack. But I didn't read those either.

I don't think, beyond flat-out information about treatments and experiences and chemical damage or safety, that I needed much reading material about it. N is such a good researcher--and, oddly enough, she loves me--that she managed the info stream in a way I could never have even gotten close to.

And, it turns out, I had chapter and verse on my bald pate and my riddled arms and my roiling guts and the spellbinding terror and sadness in my eyes. And many of those same craters in happiness I see on the battlefields of the faces of the family and friends who have not yet figured out that I'm something of a putz and left me to live alone and cranky. That's book enough for me, I think.

You; I hope you never get this fucking disease, and that you read about it and that you hug your goddamn kids and you curl into your spouse and you squeeze your sister so she'll never go away and say to yourself "Better him than me."

Say it. It's fine. If I can give anyone that; rock on.

I'm not dying for your sins; let's not get stupid here.

But better me than you? Sure. Glad to help. Rock on.

Platelets are good! I can play with knives again!

The alternate title to the above photo: "Mom, I'm just posing for a picture. I'm being very, very careful."

Just got back from the Scarsdale Library, where N read from her book and answered thoughtful and intelligent questions from the crowd (after-reading questions are not always thoughtful or intelligent, as often as not starting along the lines of "I'm a writer myself. Well, my nephew Murray, who lives with me, or really in the room above the garage we re-did after David's first wife finally moved out of town and we didn't have to worry about her louse of a brother sneaking in there with his druggie friends--anyway, Murray says that my stories of growing up near a greenhouse factory, and the character I made up named Greenhousia, who can fly and soothe jittery squirrels, are really wonderful..." and going downhill from there).

The book was just announced as a finalist for the Foreword magazine Book of the Year in the 'Book of Essays' category, so the reading became a celebration of that, too. We were there through the efforts of our aunt and uncle, local denizens with generous hearts and library connections. And it went well.

Said aunt and uncle live up a huge friggin' hill from the train station--there may be roads to Scarsdale, but I wouldn't know. It is a place to which you take the train from the city. Driving is for people in ties, or who use rakes, in that part of New York.

Anyway, about this time last year, going to their house for Seder, I had a very difficult time getting up the hill. Muscle fatigue, shortness of breath, all that crap.

It was possibly Yahweh trying to keep the goyest goy in the world from his wet eggs and horseradish.

Turns out, oddly, enough, I had Leukemia. Go figure.

This evening, not only did we walk up the hill (the family are wonderful and offer to pick us up, but we live in Manhattan and so walking a tree-lined street is something of a rare pleasure) but I carried twenty copies of N's book in a backpack. While not a tome along the lines of the last Harry Potter, N's book, and certainly twenty of her books, ain't light. But up the hill we went, with nary a wheeze or cramp.

It's been a good week.

I ran about six miles Monday and five Wednesday and will do at least five more tomorrow. These miles are coming...not easily, but at the level of effort I was hoping they would. My pace has picked up a bit without me having to push or do anything stupid like force it. My endurance was not killed. It was sent into hiding. I have Bin-Laden endurance, not Saddam Hussein endurance: it seems to know just which cave in the hills to retreat to so the bunker-busters and the special-ops can't find it.

And now it is poking its tawny, sinewy head out of its hole, stretching out a bit, taking some deep breaths, and getting back to work.

Not a marathon. Not my old pace. Not yet. Not by a long shot.

But improvement. Muscle tone. Hunger based on something other than well-shit-I-didn't-eat-last-week-because-I-was-fighting-for-my-goddamn-life-again.

Fitness. Son of a bitch, it feels good to feel it returning, even slowly. Even better that it is slow, because that way it feels like it is real, sending shoots high and roots deep. Preparing to inhabit me again for the longer term.

Cancer is not a sprint, not a marathon. It's cancer, stupid. You stay as strong as you can, you steal fitness and strength whenever you can. You know how a crow barely steps back from the cars speeding past when there's good carrion on the roadside? You know how seagulls master eddies and gales and the shifting gunwales of boats to hover in place because some asshole's holding out a french fry? You know how a boxer sometimes has to just let his guard down and take a shot right in the face because that way he creates an opening for a solid hook or uppercut?

That's cancer. Stay as close to your objective as you can. Take ever, EVERY goddamn advantage. Take what you need. Risk for reward. Be strong. Be strong enough to be weak, so you can return to strength when it's time.

Which, of course, leads to tomorrow, when we go for blood work and I will almost certainly get put back on chemo.

Wheee!

But it is maintenance, and the dosages will be lower to start, and the blood work intervals will be closer together, and basically all the mistakes that sent me for my golly-gee super-happy eight day sojourn in the City State a week and a half ago will be actively and definitively avoided.

And, you know, you have to do the maintenance. It is just like the induction and the biopsies and the transfusions and all of it. Just shut up, stick your arm out or open your mouth or offer whatever orifice they need to create or access, and take your meds.

I never let go of that knowledge. Even mid-week this week, when I felt life surging, flooding back into me as I sweat and ran and did TRX and ate and laughed with N and did voice-over jobs, and saw that little line between bicep and shoulder I had lost months ago start to reappear. Not even then did it leave my mind for one second that I would be popping poison pills again.

Likely tomorrow.

No problem. Open up and say 'fuck you, cancer.'


I'm reading a book by an actor who got Leukemia. That may very well let you know what book, but for now I'm not telling you the name because I am not finished and if it sucks, screw him, I don't want to sell any bad books for him. But I don't think it'll suck.

I was pleasantly surprised to find how jealous I was within four or five pages of starting his book. Pleasantly because this time a couple months ago I was too preoccupied with terror and illness and death to get worked up over something as petty and small-minded as actor jealousy or worry that somebody else has already gone through this or that not only did some other person predisposed-to-please-people write about getting poked and bled and poisoned, but that maybe that person actually suffered more than I did at times.

The book tells of a leukemia diagnosis in the mid-eighties, and even before I read the book I knew that medicine has come a long way since then. Not so far that I still don't get the same basic "kill this guy, but at the last minute don't kill him, then give him a vitamin or an aspirin or something, then drill a hole in his ass and see if he's still sick" form of treatment as the actor I am reading. But far enough that the nausea drugs are more specific, the chemos are more specific, and--at the base of it all--the survival rates are better.

So it was nice to have a negative bullshit myopic egocentric competitive reaction to the book, because it meant that the laundry list as long as my bruised arms of terrors and questions and pain that recently occupied all my waking and good hunk of my sleeping time was, at least for now, at bay. And I could be free to just be a selfish little prick. Aah, that's nice.

This guy had a different leukemia than I do, was a different age and in different shape, blah blah blah.

N asked me tonight if it felt good to read about someone with something similar to me who survived, lived to tell about it, made it out.

No.

She had given me a book about meditative thoughts and controlled breathing and straightforward body awareness that had helped her physically center herself and get through some of the more stressful sleeplessness. She thought that, even though I am very body-aware and use a lot of those techniques unconsciously already, it might be good to see them laid out, explained in simple language, worked into a sort of plan for getting past high levels of stress.

No.

Not to malign any book or thought or process or story. I'm just not put together that way, I guess, for better or worse.

I read about someone triumphing over something similar to what I have and I think: it's not exactly what I have, and that guy's not me, so why place any weight on that success versus just busting my ass to get better? I read about a pre-sleep technique of tensing and then releasing muscles in each area of the body, starting with the feet and working up, as a way to remove a day's abuses and get your body dialed down and able to sleep, and I think: yes, I have done that, in exactly that way, and it has worked; why am I reading about it?

I love books. I love words. God I love words. I love reading. I am easily transported by certain works and genres and music--both music music and word music, the song words make when well written.

But I don't tie it back into myself. Not directly anyway. Maybe I read something and think about how it might be worth trying to do, or worth adding to my opinions about something. I then outline in my head why it might be good to try or add to my opinions And then I try to try it or add it to my opinions.

There's a remove, a lack of instant connection. And it doesn't bother me at all.

I read this guy's book and I know he's not dead and he's done well for himself and he seems to have come out the other side unscathed, or scathed to an acceptable degree considering he isn't fertilizer.

And I think: great. Good for him. What's for lunch?

And already, and I just started the book yesterday and am only on page 115 or something, I have had a million moments of connection with his experiences--doctors, nurses, bloodletting, nausea, fear, crying, fake hope, bullshit optimism, what-have-you.

And I think: great. I know what that's like. What's for lunch?

And here I am, writing this down. There's a perverse meta-fictional displacement for me, writing about reading someone else's writing about how they experienced and ultimately escaped the Kracken tentacles of a disease only slightly different from mine, and not feeling a connection to it any deeper than the connection I am feeling to the Sci-Fi book a friend sent me from LA, or the American Motorcyclist Magazine article on the Ten Best Riding Roads, or the Technology Review piece on cellulosic ethanol, or the repeat of The Good Wife (fine AFTRA programming!) N and I watched last night.

Tonight N read from a book I have read in some form or another nigh on a dozen times. Maybe more. Read portions I have heard out loud anywhere from four to ten times before. Maybe more.

And she got to a part where a young man sings like a fool to cheer up his grieving cousin. And I almost broke down. Found my hand pressed against my lower jaw. Found tingles in the corners of my eyes where tears might spring any second.

I'm not emotionally remote. Just the opposite: this whole battle has so far scraped a lot of hardness off, and emotional reactions are a lot closer to the surface than I have ever had them before. I think I wrote earlier about a commercial almost breaking me. I work in fucking commercials! I read the damn words behind them, or act in them. I create false emotions for a camera or audience all the time. I know professionally and technically exactly how fake a commercial is. And I almost cried at one.

That's battle fatigue. On Star Trek, they would divert power to the front shields, because that's where the Roumulans were firing on them.

Well, when you divert power to the front shields, a shitty commercial fired at your stern can leave you weeping into your Apple Jacks, can't it?

It isn't about emotion, it is about finding myself in the works and words of others.

And I can't do that right now.

Some of that is surely ego--the ingrained distaste for being 'like' anyone else. But mostly I think it is that I have to focus. I have to focus. I have to focus.
Peep my head above the trench wall, see where the leukemia is dug in a few yards across the blasted wasteland.

Do not waver. Do not hesitate. Do not be distracted. It is a war of attrition, it is the Maginot Line and Gettysburg and Gallipoli and unionism in a Republican America. It is a long, long slog against an organized and tireless enemy.

Eyes front, soldier. Take that one hill. Eat your rations. Don't abandon your post.

Before this week ends, I will have run 17 miles. At least. Done resistance training three times. Made my wife laugh. Earned money. Taken my pills. Not died. Not gone to the hospital.

This week: I win.

Next week is next week. Let's see what happens.

I am home. "And some bits will turn necrotic and fall off."

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.

Open up and say "Holy Ass-Munching Christ! What is that?!"

I think, for the most part, I'm gonna let that picture speak for itself.

But for the record? That gray-white shit on the left side of the flaming red hell-loogie that used to be my uvula? That's not discarded paper towel, or aging Trident Plain Sugarless chewing gum, or a snail trapped by the camera out of it's shell and feeding on the inflamed magma that was my mouth.

Nope, that is just some other form of me. Pustulent. Scabrous. Booger-y. Something.

On Thursday we were admitted to the ER. It is Thursday again now.

For a week I have been swallowing through that glorious pain storm you see there.

Good times. Good times.

But good thing I was in the hospital, huh? Otherwise I would have been just, you know, lying around, not eating much of anything, feeling like garbage, and not really getting better.

Wait a minute...

That's what I...

...oh hell.

[Ed: at this point I would like to point out that the spellcheck on the iPad, while capitalizing the P that makes the product name correct, also changes 'hell' to 'He'll' every time you try and type it. I find this to be one of the most sickening and creeping forms of censorship, and so would now like to type "God and Mohammed blood-farting on the dove of peace while Yaweh beats a harp seal pup to death with a Torah" just to prove how fucking idiotic built-in thought control attempts really are. Everyone feel better? I sure as shit do.]

Sorry, where was I?

Oh, right. Hell.

I've been in here a while now. Tony Chevelle and the selfish carcass he married and wrapped in a fur coat have long since gone, and our very good nurse for the middle three nights got us moved to their window bed. That was by far the best event of the week.

Two other positives: our replacement roommate is a nice Chinese man with very little English, who watches tv quietly on his laptop.

And, if you can force yourself to look at the above pic again, you'll see hair. Hair all over the place. Lots of it gray or white, but don't give a rat's ass. It's hair.

OK, back to hell.

The pain got to be rally bad. Each swallow is precursored by me tensing up, bulling out my beck muscles, and making this defeated face because I know what's coming and that I can't do anything about it. Then I freeze that way, holding off the inevitable for a couple glorious seconds. Like in the movies where they have been moving in real-time until the guy lays his neck in the curved and stained wood of the guillotine receiver. Then time slows down, milks the last good moments. Milks the incoming horror.

Then I swallow, and my whole upper body convulses, my fists twitching, balled at the sides of my chest. I escape from the closed-mouth violence with a burst of a semi-word, something between 'argh,' 'ow!,' and 'fuck!' My neck sort of snaps to one side or the other, trying to shake off how wrong that just felt.

And then the saliva starts to build, and the cycle reloads.

Magic Mouthwash, the universal gargle in this place that has Lidocaine in it, doesn't help more than a little. Viscous Lidocain solution, 2% of the stuff in a little shot cup and slippery like snot, is mildly better but not by much. This shit called Sucralfate suspension, which is...I don't have the slightest what it is but it is pink and tastes gritty, does a mildly better job than the other two. But all of this relief is like saying 'my whole leg is on fire but when you blow on my toes I guess that's better.'

I look like the worst kind of orderly junkie, with fully a dozen holes across the undersides of both arms, certain Magellanic clouds of punctures wrapped in their own individual bruises.

The Drs finally talk me into narcotics, as you know one of my favorite fucking topics. Not a single flicker of medical improvement offered, just plain old cop-out in convenient syringe doses.

But they convince me that if the pain is less I can swallow more, and I can rest more, and that will help me get better.

The first shot they give me is 1mg of morphine, and the nurse pushes it kinda quick, and so I get that wash-over-you roll that I assume Keith Richards really digs, but just makes me infinitely sad, like watching quicksand take a puppy that is squealing and squealing.

But the pain subsides for an hour or so, and I relax a little. I'm depressed, but I am not tensed against the coming swallow.

The next shot is 1mg again, but when the Drs find out about that they get kinda mad, because apparently that's the dose they give babies.

So the third shot is 4mgs. It is pushed slowly so I do not drown in the wash, but it's a lot of morphine. And I don't feel that much relief. Some, sure, but not four times the previous hit.

After that they realize it might be best to get me attached to a PCA pump, which allows for self-administered doses of Dilauded. Each button-push doses .2mg. And since it is still IV it gets to me pretty quickly. This seems like the best way to allow me to get through a night. By now I have been here four nights or so, and have developed the pain-dance each evening where I will barely get to sleep and then will be awakened by the kick-to-the-sleeping-nuts of swallowing while unconscious, and that yanking from slumber and attendant pain makes sleeping again really tough. I find I am making these astonished faces at the ceiling when I swallow awake or cough. I am amazed at the pain and sending this shocked face of wide-eyed agony towards the fluorescent lights.

So now I can push the button, and slip quickly to sleep in the fifteen minutes where I feel a mild numbing. Then when I cough or swallow awake I just push the button again. Repeat.

It gets me through the night.

And it brings my father's death right up next to me in th bed. And it breaks my heart, and almost my spirit.

I don't know if anyone else saw this coming. It may be a collection of images only I have.

But when dad was dying, there were a couple visuals that really seared into me. One was this look of childlike astonishment at certain unpleasant sensations. He had lost most of himself by this point, the steel mind and furiously enforced calm, the thinking and thinking and caring. Most of it had been eaten by then. His leg muscles had turned to bags of lentils, he would stand into my arms by his hospice bed in the home he and his wife shared, and he would take a few steps with me. But only because some vestige of him wanted to please me, knew I was somehow a familiar presence whose arms were out. He would stand, restless in his lostness, and we would waltz an ungainly and love-shredded two or three steps before he would falter, look up at me with a blank face, and begin to sag towards the bed again. I lost him twenty times that way in the last three days before I lost him. I am sure his wife went through the same thing, or something else pure and tourniquet close for her.

And on the way to lying down again, at a particular moment when his head would push at the raging tumor in his esophagus, or when his legs would not be able to take the weight any more, he would blast this innocent face of perturbed discomfort out at the sky, or the ceiling. This bright flash of 'Something's really unpleasant!' just for a second. Then it would pass.

And for the pain--to blanket those last days in as much comfort as possible, to deny the rotting body it's last whips of pain--he was on a narcotic pump. I don't rememberer if it was morphine, or Dilauded, or something else. And it was embedded right into him, without a needle, because he wasn't coming back. But it was the same brown as mine, and the same size. And made the same noise.

The last joke he played on me, from the grave, was with that pump.

He had died a little earlier that night, and I was alone with the body, having been allowed a few minutes to get him ready for the coroner or undertaker or whoever. I was leaning over his body, getting him laid out and presentable. He'd been dead for at least twenty minutes by now. I had my face about three inches from his chin.

And he whirred.

The following seven seconds will be the most emotionally charged and busy I will ever experience. I shot up, cursing and stopping myself from cursing at the same time. Terror swept through me parallel to the knowledge that he wasn't there, terror that we had said goodbye and abandoned him when he wasn't gone overlapping perfectly with the knowledge that he was not there. Then as I realized it was the battery-timed drug pump filling a corpse with pointless doses, I collapsed with relief at the same instant that I started to find it hilarious, at the same moment that I knew dad had never liked drug humor that much, at the same moment that I thought he would have found what just happened absofuckinglutely hilarious, at the same momentthats I knew he would never know that it had happened, at the same moment that I wished, wished, oh how I wished that he would. It was the last moment we shared, and the first moment we didn't.

And now, here I am, alone in a mechanical bed, eyes popping with an innocent's astonishment at how much it hurts, how wrong it is. With this brown plastic pump murmuring it's whirring drug-song to me in the dark.

It doesn't make me fear dying. I know what cancer took dad and how, and my reaper cannot fucking have me yet.

But god it's lonely. And so, so sad.

N right next to me or a million miles away. Family, friends. Doesn't matter. This moment is another kind of mime box; a Harry Potter cape. It's just us in here; me and Mr. Death, Mr. Memory.


Watching the boats go by has helped. I had forgotten, both the extent to which American cities have turned their backs on their waterways, and just how many positive receptors can be touched by watching tugs and tankers and cutters push their noses into the massed power that is a river. N starts 'oohing!' and I shuffle off the mechanical bull, dragging tubes and poles and whirring pumps, and clamber over to her spot by the window, and she points, and there's silence, and I say something like 'that one's loaded down! Look at how low in water she lies.'

And life stings a little less. Time grows a little shorter.

Partially because of the drugs and Drs and stuff, but, honestly, mostly just because time fucking passed, my white count finally left the floor, peaking at 5.4 yesterday and settling back into the high threes today. I got another bag of platelets and my hemoglobin is above 10 today, and it looks like they intend to send me home tomorrow, a week and a day after we stumbled in here, hobbled and scraped empty by medical myopia.

We'll get a bit of a break before they start the chemo again and look for the balance that should be maintenance. And this time we're more than ready to be hard-ass about taking it slow, finding the dose carefully, and doing it right.

My exercise and racing schedule has been pushed back quite a bit, and I have to just accept that and rewrite my hope list again. No problem. Our travel and comfort and OK-to-be-alone schedule has been origamied once again as well. No problem, we'll look at it all anew and figure it out. Where I thought I would be starting to see old musculature returning and where I thought I would be in double-digit run distances, I see atrophy from last month's gains and four mile runs as goals.

Fine. Keep throwing shit on me, because shit is fertilizer, and I am just growing stronger.

And I don't smell so hot.

Gimme some room; I'm gettin' up.