Thursday, November 3, 2011

The Shortest Distance Between Two Point is a Straight Line









Summer dies. Arcs high and hot with a flourish, then dives face-first beneath approaching Autumn like a tectonic plate subsuming underneath its brother, to melt-boil back to magma beneath the mantle and wait its turn to become earth again.

See what happens? I stay away from a blank page too long and I write thick shit like that.

I mean it, though. Time passes. The bastard.

The first photo above is from an hour or so after the Grizzly Half Marathon. It is recommended that after an endurance event--a pushing of the self that has beaten the piss out of your muscles, creating loads of frothing lactic acid that squeaks and burns between the sinews--one take an ice bath, or cold bath, or in some way apply cold to the muscles.

The Grizzly takes place very near the South Fork of the Teton River, which spills from glaciers a mile and a half in the sky, and is sixty degrees or so in August.

There's a shrinkage joke in there somewhere, but I don't have the patience. That photo is from August 6.

The next photo is from August 30, about two weeks on the far side of the chemo punch I started to describe in the last post. And about two weeks before the second hit of he combination known as Intensification. But I'll get to all that in a second.

So that's 24 days. From half marathon at altitude to rubbing bald spots onto your head with the heel of your hand. Later that day I buzzed the corpses of my hair down to a centimeter so I wouldn't look like such a...patient. But the patches were obvious, and left to their own devices would have taken a week or more to fall out, so I stood in the shower for 45 minutes the next day and shaved it down to shiny.

The shortest distance between two points is a straight line.

OK. Sorry: let's try to get our timing straight, hmmm?

I completed Eagleman on June 12th. My GI tract and I had a long, drawn-out philosophical discussion about the perceived value of intense exercise and the purposeful ingestion and infusion of doctor-recommended poison. My GI tract made some very salient points. Some very pointed arguments. Over and over. Compelling arguments, to be sure. Ones I pretty much ignored. There's health, and there's comfort: the difference means a lot to me.

Over July 4th weekend N and I went to Vermont, where she gave a reading and talk about her book and her work, after which we spent some gorgeously smooth time with friends on the rocky and green shores of a clear, deep pond. Happy birthday, America.

I got back to work, recording six audiobooks over the next five months, along with my regular HBO work and the odd--but very very welcome--voice-over gigs that were and will be again the meat and potatoes of a career.

I settled into my maintenance schedule: 6mp every day, methotrexate once a week, and Vincristine once a month. Got, to the extent possible, used to it: used to when it would feel bad; when I would forget for a day or two that I was even in treatment; when a flight of stairs would empty my lungs and set my legs on fire and get me all panty-bunched and scared again; and when I felt strong and capable and imbued with a strength- and love-derived patience: I can wait this fucker out. I can get there.

With a white count usually in the 4's I could go out and about with less fear of infection or cooties or whatever. I saw Kix, a band from Hagerstown, Maryland who built a solid mid-Atlantic following in the Eighties--and who were the reigning hometown heroes at Hammerjacks, the working-class heart pumping National Bohemian beer through the veins of Baltimore's twitchy youth as I was growing up. Then Kix had a bona fide hair-metal hit and two consecutive albums that topped the charts. Then they settled back into reality, eventually went their separate ways and did their separate things, but kept a core fan-base who are never sure if they loved the band or loved the Maryland and the age they remember being: most likely a deeply true mix of both. Kix played BB King's Blues Club on 42nd street in Manhattan. The place was packed for an 8pm curtain, and the band was tight and the lead singer, too much older to own all the high notes and long screams of his heyday, was pro and tight and talented enough to know the sneaky back ways to those notes, moving around the places in his range and endurance that had admitted the years. They put on a great, great show. And they thanked the audience--more Orioles and Ravens caps and shirts than I have ever seen in New York and will likely see again--for making a gig they had taken with a little trepidation (will we fill a venue in New York City? After all these years?) into the swollen messy blend of reunion, tryst, and guy joy that only a rock show can be.

In late July I flew to Seattle for the AFTRA Convention. Five harried, tiring, glorious days of union activism, political maneuverings, human interaction, learning, forgetting, and organizing. If you don't believe in that kind of collective power to do good, you'll have no idea what I mean. But if you do--if you think that we can be better standing next to each other than we can wandering alone looking out only for ourselves--then maybe you'll have a sense of the sense of accomplishment that can come from the barely-regulated coming-together of a whole bunch of people from all over the country intent on trying to be good humans.

N flew out at the end of the Convention so that we could take a train from Seattle to Montana, where Mom and Jim were. Mom's from Montana and they have a place there now where they spend as much of each year as they can: and I am proud to say that they spend a few of the months nobody in their right friggin mind would spend there. None of this snow-bird, retiree comfort garbage. If you find a Montanan (which can be tough, as there are only about seventeen of them) and ask him or her out of the blue if their state is a pretty or pleasant or a good place to visit, they'll say "Nope. Winter's ten months, summer's a drought, it gets to be twenty below a lot, and more'n'likely a bear'll eat you. Best thing would be to just get back in your Daewoo Leganaza and go back to wherever you're from and stay there."

And they're right. They're just leaving out that it is the most beautiful place in the world more often than not. All the more beautiful because it's liable to kill you.

In 2005 I ran my first marathon in Montana. The Grizzly, which went from...um...a line scratched across a gravel road about thirty miles outside Choteau (which is pronounced like a drunk trying to tell Dorothy's dog to be quiet) to...well, actually...that same line 26.2 miles later. The course rolled over an average altitude of a mile. There was a hill around mile 19 called Hillus Horribulus (a cute-ish version of the Grizzly's Latin name) that, between the lack of oxygen, the golf-ball-sized gravel roads that covered 18 miles of the course, and the 11% humidity, to be blunt, sucked. I ran a 3:43, and was hooked.

Now, six years later, I had changed my entry to the Half because the chemo held me a little lower than I thought, and because N didn't need any extra worry that me pushing myself unnecessarily would have caused. I could have run the Full, but it would have been awful, tearing, a little dangerous, and stupid. N was, as if often the case, right. Whereas I could actually train with a bit of oomph and try to put in a good time for the Half. Completion is victory. The battle is with the Leukemia. Note to self.

Our two weeks in Montana were wonderful: restful when they needed to be, hard and rough and full of accomplishment when that was needed. We ate and visited family and I ran and we hiked and we ranched and we got so settled into it that I was able to forget for pretty good stretches that we hadn't been there for two years because of the Leukemia. That we hadn't traveled much of anywhere for a year and a half because of the Leukemia.

The Half Marathon started half-way along the Full Marathon course--which, if you think about it, makes a lot of sense. Because Mom and Jim live closer to the start--and half-way point--than they do to town, I was given special dispensation to not drive 27 miles into town at 4 in the morning so that I could get on a rented school-bus with a bunch of people and drive 14 miles back the way I had come. My family dropped me off and then went into town for breakfast and to wait at the finish line. The course has changed over the years and an in-town finish, while making for a less interesting race for the runners, makes for a better experience for the town. And raises the possibility of people spending money in town that day. In this economy, in a small town along the Rocky Mountain Front, that trumps almost everything.

The start of the Half was on a gravel road cut into the side of a small rise. As I got out of the car, a blush-hint of sun was glowing to the east, making stark black-on-lightening-blue silhouettes of men walking over the rise to pee before the start. Hobbling ghosts, with their hands in their short shorts.

The volunteer there to start the race at the pre-appointed time so that the finish-line clocks would be in synch for both distances was, well, interesting.

Usually race volunteers are runners or ex-runners or injured-right-now runners who are ebullient and sad that they're not out there with you, but who are in touch with the mildly laughable solemnity that we carry into a race start.

This guy had an AK-47.

So there's that.

I don't wanna stir up some bullshit stereotype about Montana. There are as many elegant, intelligent, sensitive people out there as there are anywhere else (percent-wise: remember, there're, like, two dozen people in the state). And there are as many batshit crazy denizens of the misty thresholds of reality and/or intelligence.

Yes, there are compounds full of people who have had forty-two meetings in their special hats to decide what the flag of the nation they are creating within their fences should look like. Yes, there are more nuclear missile silos than anywhere else in the country. Yes, there are poets and painters of the greatest depth and connection to the land and the soul. And yes, there are humans of every walk and smile who work hard and care for one another. It's a place; that's all.

Anyway, this gonzo dipshit spends the last five minutes before the start telling the assembled dozens of shivering, expectant runners how he's gonna fire three rounds off to signify the start, and that, though the light is starting to come up more than he'd thought, he packed the magazine with tracers so we should all be able to get a good clear view of the bullets as they whiz out of the muzzle.

Did I mention that the AK-47 had steel hardware? Silver in the pre-dawn, not dark gunmetal like you'd think.

Oh, and he'd sawed off the stock. So, you know, it would be easier to, I don't know, hide behind a four-year-old, or something.

Now, the runners assembled in the Rocky Mountain air are not the same sissy-ass, tech-wearing, GPS-obsessed hoohahs I scoff at in the corrals of New York races (while being one, obviously). You have to either have friends or family, or be a little off, to drag your ass out to this spot on this morning for the sole purpose of running around. They do a fly-over the night before and then tell you how many bears are near the course before the start.

But still, the ratio of people there almost solely because they want to be running, and the people who are there because they might be deeply interested in the firepower, munition-arc, and muzzle-flash of a modified Kalashnikov was approximately everyone-versus-that-guy.

So, at the pre-arranged moment, the gorgeous zen of a high country morning was torn in three by the rip-flaring thunder of an utterly pointless weapon, and a couple dozen people wasted the first two seconds of their race time crouching down a bit and huddling together a bit like stupid, nervous sheep who have just scented a dog. I'd bet a hundred bucks at least one of us shit our pants a little.

And we were off.

I ran hard but not too hard. I pushed myself as much as I thought prudent. And up there, with a frosty start and a sun-cleaved finish, and really very little oxygen, I crossed the line in front of the school in 1:48. Almost twenty minutes slower than my best ever at sea level, but a victory and a barrier felled and a wobble-leg, lung-sucking sense that Leukemia could, once again, at least for today, kiss my ass.

We came home to new York, I recorded an audiobook about a Minotaur working as a line cook, and then it was into the hospital for cycle A of the HYPER CVAD that makes up my Intensification.

MD Andersen in Houston, the respected cancer center, had been running numbers and kicking tires and blowing up gerbils, or whatever is they do to arrive at new scientific ideas, and they decided that poor schmucks with my kind of Leukemia would be best suited by interrupting the sustained mildly-ill-ness of my two and a half years of Maintenance with a couple nice donkey-kicks to the system. So at month 6 after Maintenance starts, and then again a year later at month 18, I would go back to the 10th floor. In August it was five days in with mixed and cross-timed drips of four chemotherapies non-stop. Then three weeks or so to recover and get my numbers high enough for another anvil to the face, and in mid September I would go in for a 24-hour drip of Methotrexate (they pulled the Ara-C out of the regimen for some reason, and I wasn't about to risk them adding it back in by asking why).

So in we go to the aforementioned private room. We were able to stay there the whole time. Having yanked my port (you can still smell burnt me on it if you unscrew the cap of the little medical tupperware it's in on our shelf and take a snort), I had a PIC line installed, which was kind of cool. This nice plebotomist poked a hole just under my inside right bicep, and threaded a tube into my artery using what looked and, oddly, felt like the G string from an electric guitar (I string with super-light GHS Boomers, so maybe it would feel like a B string to someone used to blues-gauge D'Addarios). She asked N to help her, handing clean gloves and stuff from her PIC-line kit, and was quietly pleased and a little shocked that a caregiver could be so calm and adept at the procedural aspects of care: we've been at this a while, and my wife knows her shit.

She was also a little taken aback by my performance. I guess she doesn't install dipsticks in a lot of actors. There is this great moment during the procedure when the patient is asked to turn his head in a certain way so that the tube forging against the current of blood doesn't take an accidental left and slide up into your brain. They want the tube end to hang just outside the heart, so the poison can drop right into a thrashing mix of about-to-deploy blood, the better to speed throughout the body and fuck you up all over at the same time. Wheee!

So she asks me to turn my head a certain way and kind of clamp my chin toward a certain spot, and she's still talking even though I hit the pose as soon as the director asked. She trails off after a second because I am holding the pose, stock-still (and likely looking towards her out of the corners of my head-turned eyes for approval or applause of some such ridiculousness) and steady. Then she makes a sort of positive-sounding harrumph (which is, I guess, all I was gonna get) and threads the tube the rest of the way home.

Then she put something that looks like a speaker-phone had sex with a shoehorn on top of my chest, and turned on a TV, and played an interestingly unnerving game of Thoracic Pong. Whatever the hell was inside me showed up through sensors on the phone-horn, and the TV screen showed a little green dot moving in tiny fits and starts toward the exact center of three shapes as she sightly pulled and pushed the wire through the hole in my arm with her left hand.

Satisfied that my Drano drip was positioned well, off she went, and we spent the next five days observing all sorts of fun crap being dribbled into me.

The last of which was the Red Devil.

Goddammit.

That's the closest I got to losing my control over the psychological aspects of the ordeal: the image of the PIC line mouth dangling over a valve in my heart; flash-memories of that moment I saw my Bergen-Belsen frame in the night mirror all those months ago and scared myself into A-fib; the candy-apple red of the chemo in the tube. It scared me down near the middle, down where the bass drum at a metal concert gets you, down where you hurt when you see people you love crying.

But they did their jobs and we did ours and it was up and out after the appointed time (plus a day or so for all the added hooey of a hospital visit). N and I celebrated our 7th anniversary somewhere during the third or fourth chemo. We don't really give a crap about dates like that, but still. Time passes. The bastard.

I lost about eight pounds at the bottom of the recovery, but, in all honesty, it wasn't so bad. I think that's an almost dead heat between the medical aspects all going correctly this time and just the change I've been through; what I now accept as not so bad that might have whipped me into foamy terror a year ago.

Then Hurricane Irene hit New York city. Most. Boring. Hurricane. Ever.

I don't mean to minimize the death and destruction elsewhere, and I think Mayor Bloomberg did exactly the right thing over-preparing New York so that we were good and ready. But, seriously? It rained for a couple days. And it was windy Saturday afternoon. Yawn.

Later that week all my hair fell out. First it hurt. Then it turned stiff. Then it fell out. My vanity took a hit, and the tan I got in Montana now looked really odd--a little like that half-hawk guy from the Gil Gerard Buck Rogers TV show from when I was a kid. But you know what? It's just hair. Hell, it's like a badge that I'm still fighting. And I'm saving cash on shampoo again, which is always a plus.

I got above 160 pounds, my numbers came back up, and in we went for the 24-hour drip. The PIC-line had been yanked as soon as I didn't need transfusions after cycle A, which was a few days; they did everything very well and I was in better shape going in, so I didn't need much topping off. Maybe two bags of platelets and four bags of blood over a week or so was all. So I just had a bunch of IV's for cycle B. Three going at one point, because Methotrexate at that high a dosage needs Leucovorin running through you all the time as a rescue agent. It grabs the Methorexate as soon as it has passed into your exit system. Because, apparently, if you leave Methotrexate alone and unattended in your exit system, your bladder turns into blood. To quote Bill Murray from Stripes; "I wanna party with that guy!"

And I needed another IV for something else. I swear to god I forget what. Maybe just blood work. No, I remember, I think they wanted me on regular fluids the whole time too, to make sure I was as hydrated as possible so that the chemo didn't have much chance to linger. Makes sense to me: where do you wanna pop that needle?

This was all right around the tenth anniversary of 9/11. The freedom tower should have been up years ago, the rest of the country is finally starting to have a mild distrust of New York like they did before the planes hit (which relieves the hell out of all of us here, 'cause it was a little freaky being 'everyone's citizens' there for a while), and we'll never be the same but we'll keep on keeping on.

On October 15th I ran the Baltimore Half Marathon. Another race I downgraded to a Half from a Full. I made a deal with the Dr and N that if my hemoglobin wasn't higher than 11 by a certain date I wouldn't shoot for the Full. And my Hemoglobin hit right on 11 on that day. Discretion:Valor:Whatever. Part of me will always think of it is a defeat and a weakness, but another part of me is getting a little tired of that first part of me being such an a-hole. And anyway, I'll use whatever rage or sadness is in there to train when I'm further off the treatment, because I want to break three hours in Baltimore. It's where I'm from, it's a really hard course (breaking your personal record on some easy flat course is for nimrods and poseurs), and breaking three in Baltimore is where I was heading when I got diagnosed.

So instead I ran the Half, and I ran it slowly, and I stopped and talked to Mom and Jim where they were cheering for me, and I enjoyed the humans, and I ran back ten yards on 33rd street to grab a handful of gummy bears, and my NP ran the full and finished 3rd in her age group her first time on the course, kicking my ass, and I just enjoyed the day and the weekend and everything. It took me over two hours to finish, and that's totally fine. Not everything has to be a battle. Sometimes you gotta just stop and smell the gummy bears.

And then I got on a plane and flew to San Francisco because N's book won the American Book Award and the ceremony was the day after the race. I was a little leg sore but over the moon to be on her arm, and a tidy, sun-filled room at UC Berkeley floated and popped with the talent inside and the pride I was beaming out like a 1500-watt Microwave pounding a ball of tin foil.

We've been home for three weeks. Regular days for the most part. I'm training for two races, and I want your money.

Next weekend I'm going to run my second Multiple Myeloma Race for Research with an in support of my stepfather. Last year I ran it bald, too. I was very fresh from the grinder, steroid-bloated, atrophied, scared, and adrift in the middle of the current. But even through all that it was clear that there's always--every second--a world outside the "I" that carries as much sorrow and danger as it does joy and glory. There are lots of people who need good things to happen for them. And even from the center of my ordeal it wasn't hard to know that running to support and raise money for a cause of general human value and direct personal value to someone about whom I care very much was a good thing to do. It seemed like not doing it would be like not helping someone who needed a hand just because you had a sore back. There's no relation between the two ails. Just help when you can.

So I'm running it again, and this year I'm gonna try and burn the pavement...or whatever that means in my current state. It's a 5K, and there's just one 'hill' (which is what they call the elevation change over an on-ramp in suburban DC, I guess) you hit right at the start and right a the end. I'm gonna wear my ROCK acronym again on the back of my shirt. Running On Chemo; Keep up. But this year I hope it makes more people feel bad as I pass them. What can I say? I'm that kind of guy.


And I want you to pay me to do it



C'mon. You got ten bucks? You got a grand lying around? Gimme it.

No, seriously. Gimme.

Monday, August 15, 2011

Catching up to myself




The east river runs blackboard green right now, north to south. But that will change. It always does.

We're back on the cancer floor. 10 south for a change, and, miracle of miracles--or maybe a history of being a low-maintenance and helpful patient and caregiver-giver--we have spent the whole stint in a single room. The singles are for isolation patients, so I try and look like i'm always working on a really pleghmy cough whenever I get near the slit window in the outer door, but I doubt anyone is fooled. If someone needs it, they'll boot us. And that will be fine.

OK, where was I? Ah, yes, Cambridge Maryland, June 13, I think, year of a fictitious lord two thousand eleven. Eagleman.

Eagleman is a half Ironman distance. Competitors:
Swim 1.2 miles
Bike 56 miles
Run 13.1 miles

In that order.

Eagleman takes place offshore from, in, and around the lovely town of Cambridge in my home state of Maryland. The swim take places in the Choptank, a river I have been sailing, crossing, swimming, and watching creep below me in summer Ocean City traffic most of my life. The bike leg leaves town and goes through the gorgeous Blackwater Wildlife Refuge, and the Half Marathon loops back through the backside of the town and out a bit into the cornfields that surround many Eastern Shore towns, often as not growing corn to feed the millions of chickens raised there on their way to American tables and gullets.

Oh, and the race is hard. Some scoff because it is virtually flat. Those people, the ones scoffing? They're tools. The Chesapeake Bay has a trick we sailors have known about forever--permanent headwind, direction-irrelevant. There's very little shade at any point, the Shore in mid June tends to be in the 90s with near equal humidity, and the only wind that might cool you is blowing right up your frigging nose. Bike speed averages here tend to be slow. And the Choptank is known, oddly enough, for it's chop.

So, sure, it is not the hardest 70.3 (inside slang for a Half Ironman, that denotes total mileage) but it is not the easiest either. Find me the easiest race, and I'll find you a waste of time. What the hell's the point of challenging yourself to something easy? Just seems stupid.

I almost passed out before the start. I have slowly and grudgingly discovered that one of the biggest physical shifts since treatment and into maintenance chemotherapy has been towards a tighter connection between my emotional and physical states.

Since diagnosis and treatment I have softened, or at the very least the rough-hewn walls between my emotions and my physical state have become much more semi-permeable. Part of this original division stems from being an actor: in order to be able to call upon your physicality at any moment to perform not-currently-true deeds, you have to able to be separate from whatever emotional truths you are experiencing. A professional performer has to pratfall when he's sad, stumble when he's at the height of his powers, seem unsure when she knows she has it all in exactly the right place.

Some of the division comes from being part Norwegian and part Scottish, or from the events of my life up to now. Or from being an Orioles fan. It could be anything.

But since diagnosis those walls have become a lot more like pumice than granite. Sit on one side, and you can hear the weeping, or the laughter, or the terror, on the other. A mediocre long-distance phone commercial can choke me up. There is a line N often reads from the prologue to her book when she's on tour, about pigeons: "[her grandfather] says they are fattest outside the library, because readers are generous. He says they always find their way home." I have read and heard that line hundreds of times. And I have never thought it anything but beautiful. But these days, I can't hear it without crying.

And so it goes with anticipation. Sitting on the parking lot asphalt in my tri-suit (a silly buy efficient mix of bike shorts, tech top, and pocketed exercise garment that most resembles Coney Island era one-pieces for men) I am sweating profusely from under my swim cap, as weak as I have felt in weeks, and just plain scared. All I can think about is drowning, or getting heat stroke, or riding off the straight flat roads into the brackish murk of the Blackwater Reserve.

But there's a tiny voice behind all that sort of incoherently telling me to shut the fuck up and go get in the water for my start wave.

So I do that.

Mediocre rock music piped across open water to people wearing swim caps. 'Eye of the Tiger' played to death before 8am. A local MC who may or may not know a single goddamn thing about triathlon and/or the region in which you compete (ours made it a solid half hour calling the river the Chunkthink before some local straightened her out). All of it lost because all you can do is tread water and anticipate. This is the worst part of racing. This is the best part of racing.

The air horn sounds, and in the space of three seconds you inhale a bunch of river, you worry that the timing chip velcroed to your ankle will come off any minute and render your whole race a fish tale, and the pasty white heel of some guy within five years of your age smashes full force up and into your nostril, trying to drive your septum and about five grams of brackish baywater into the center of your brain.

I finished the swim in just under 48 minutes, which was not bad but not stellar. Then again, I was on chemo. I kind of had to keep telling myself that--that day, the days and weeks prepping, the days I couldn't run or swim or bike enough to really feel like I could kill this race.

I was never supposed to kill this race. I am supposed to kill cancer. You see, in my head leukemia stands, arms akimbo and legs out wide like it is on the rolling deck of a tanker. And leukemia says to me "I own you. Go fuck yourself. You do what I tell you, and if I don't want you to accomplish something then goddammit you won't. Now go curl up in bed and listen with fear to each heartbeat. Nighty night."

That's my battle. And I forget sometimes. N reminds me that it isn't that I ran a slow three miles or that I was beat at the end of a day reading two hundred pages of an audiobook. It is that I did those things on poison. On purpose. People I run with, audition with, do union work with, sand floors with--they are helpful in seeing the leukemia, sure, but seeing it as this thing I am acting through.

Acting in spite of.

So I work to keep that in my head. Work to keep perspective on what my goals really are. Work to keep being me, owned by no disease or it's treatment.

The bike took about three hours and twenty minutes. But they factor in your two transition times to your total bike time, so if I recall I was actually riding about three hours and eight minutes, which over 56 miles is about seventeen and a half mph. I'm sure the winners went a lot faster than that.

I had aero-bars for the first time this year and it helped. They are bars that extend off the front of your handlebars that allow you to stay in a tuck and aerodynamic position as much humanly possible. Especially on a windy course, it makes a huge difference to keep yourself as out of the wind as possible.

People on chemotherapy are five times more likely than regular schmucks to get skin cancer. What being Norwegian Scottish Irish whatever adds or subtracts from those statistics, I don't know, but as soon as I was released from the hospital N made sure I got expensive and thick and predominantly natural sun cream. I had a lot of it on, slathered everywhere I might have a where.

But swimming and having strangers' armpits rub against you for 48 minutes and then leaning over a bike with no shade for three hours tests even the best sun cream. Suffice to say that I still have pretty distinct tan lines where my tri-suit crossed my shoulders, these two months later. Suffice to say it could have been a lot worse.

I worked the bike leg pretty hard, cursing and drooling and dropping my nice cold water bottle in an effort to get a drink without leaving my tuck. Luckily they have replacements at the aid stations, but I still stewed over dropping the one I had pre-frozen the night before. I grabbed some of the food bars from my tech pockets, grabbed a banana from an aid station, and balanced water and sports drinks throughout. But I was still pretty beat as the bike ended and the half marathon loomed.

Just get me to the run. That's what a lot of poeple who come to multisport from running say. All this silly swimming and biking shit is the obstacle: just get me to the run. If I get to the run I know I'll finish. I know I'm home.

And I thought that, too, but I was ragged out. And here is where I am most proud of myself.

With as little pomp and circumstance, as little self-flagellation, and as little tears as possible, I walked a pretty good portion of the first two miles. I would run three hundred yards, then slow to a quick walk. I'd pick a tree or a corner, and I'd pick it up and run again. I grabbed a handful of ice from the Mile 1 worker and threw it under my hat with one cube left out for my mouth, and when that melted I ran again.

I didn't beat myself up. I knew the goal was the finish line. I'm not fighting the streets of suburban Cambridge: I'm fighting fucking leukemia. The goal is the finish line. That's all. Dying with a good effort is worth a thimble of cat piss: completion is victory.

By mile 2 I decided I had rested enough. I felt the heat subside internally and the baseline strength come back to where it should. So I ran. And I didn't stop again. The half marathon took me two hours and twenty minutes. That's slow. And I'm fine with it.

There was a brief period where my sun-addled mind thought I could do the half marathon in under two hours. Even now I laugh as I try and find the logic that would have allowed that. I looked at my watch every mile marker on the run. Saw the 13s and the 12s at the start, then settled into the 10s and 9s once I paced up again. It was impossible math from the get. But math has never been my strong suit.

And I finished strong. I have mentioned before that this is not always a good thing. More often than not it means you left a little too much out on course, that you don't understand how to dose your effort. 

But, c'mon, I'm a performing bear, all the way through to the beaten and recovering and soon-to-beaten-again marrow. Finishing with a high turnover, a scrunched pushing face, and some light under my feet means as much to the quiet panting boy in my soul as it might to whatever camera I am mugging for. It's what I am. Who I am.

But, to be safe and to fulfill a promise to N--who had worriedly allowed me to pursue this abuse because she saw and sees how much it does for me, risk or no--I went straight from where they give you what seems like an absurdly heavy finisher's medal and take a picture of your cross-eyed pathetic self, over to the medical tent to get checked out.

I felt fine--all things considered--but had gotten goosebumps for the last two miles or so, and that can be an indicator of core-temperature differences that someone in my situation should keep an eye out for.

So I stumble to the tent, just across the finishing lane from the medals and photo podium. There are maybe ten EMS or EMTs, and one official doctor. The tent is open front, thirty feet wide and fifteen deep. There are cots and chairs. There are tired people of all stripes and sizes on the cots, on the chairs, on the ground between the cots and chairs. Some have IVs, some ice packs crinkling as they dribble themselves dead onto the backs of heated necks. Some people just have their heads between their knees, wrists flapped and hands dead-bird down in a position that speaks only of exhaustion. It reminded me of the field at Agincourt from Henry V: 

"I tell thee truly, Herald, I know not if the day be ours or no."

The day was mine. I walked up to the first EMT and said "...umm, hey, uh, I just finished and I feel pretty good but I there were maybe goosebumps and I'm on maintenance chemotherapy for Leuk--

That's about all I got out. The pleasantly burly gent furrowed his brow for half a sec, then just kind of bunched my partially unzipped tri-suit in his hand and walked me backward gently to where a cot caught me under the knees, and in was sitting.

He waded through the tired people and the tired people caring for them, and disappeared. 

I watched a daughter bring a banana and an ice pack to a man who looked to be in his early sixties. She was crying. He was nearly asleep on the ground next to me.

"I'm so proud of you, dad."
"I love you, honey. Oh, a banana. I'm. Yeah. That looks really good."
"Here. I'll peel it for you."
He smiles.

Then there hoves into view the perplexed but calm face of a young doctor, the only white coat in the place, the only red embroidery of a name. I didn't catch it.

"Did I hear right? You're on chemo?"
Now that it is done and I have caught a little breath and I know I finished, I am getting a little emotional.
"Well, I haven't taken today's dose because of the race and all, but yeah."
"What do you have?"
"In treatment for Leukemia. ALL. Remission about a year and a month now. I take 6mp ever day, have Methatrexate coming tonight, and Vincristine once a month."
"How are you feeling?"
"(choking tears a bit now) I...I'm tired."
"You look OK. You want an IV?"
"No, I just wanted to check in here. You know, make sure. I think I'm doing OK. I just wanted to..."
"You sit for as long as you want. You need anything, let us know."
"Thanks. I'll free this spot up for someone who needs it soon."
"Not a problem."
"Thanks. And, um, thanks for being a doctor. I mean...you know...you guys are helping keep me, not dead, and here, and...thanks" (tears and a little snot now).
...
"Hey, 1036?" (he doesn't know me, can only see my race number).
"Yeah?"
"You're an idiot. But you're my hero."

I laugh-snot-cry a syllable. Then go get a piece of corn on the cob. And a cookie. I think.

I finished in six hours, thirty-eight minutes, and forty-two seconds. Less than an hour slower than my time two years prior, when my marrow and I were still getting along.

Left foot. Right foot. Repeat.

Saturday, July 30, 2011

I. Am. EagleMan. Part One: Pustule



The photo is a placeholder because I don't really understand how to use an iPad. I'll put up the real pic when we're back in New York.

Actually, screw it. This can stay here. I love Mongoose dirt bikes, and I won't get to Eagleman till a later post anyway.

Glad I got that cleared up.

Anyway, uh...how ya been? Heard any good jokes lately?

OK. 

Sorry.

That's kind of all I can say. Forgive me, reader, for I have sinned. It has been--jesus--more than two months since my last confession. 

I can't particularly explain why I stopped checking in. Or, to be more honest, I am sure I could explain, and it might even make for some good writing or a couple of illuminative moments about living as a cancer fighter instead of living as a person.

I might go into to the  likely psychology behind just kind of turning off the 'this is me, the guy in treatment, the guy whose day-to-day is all about fighting the disease, staving off recurrence, and being a fighter fighter fighter' role.

This list of missives has helped save me, helped ground me, helped N and I figure bits and pieces of the process, helped in many ways. But it only has one raison d'ĂȘtre: cancer.

And maybe I just got tired of that.

I can't shrug off the maintenance. I can't skip a trip to the CityState. I can't idly play hooky from the bone marrow needle or the little bag of Vincristine.

I am tied to those things and many others in a slavery that--while it means my likely recovery and my hopeful full resumption of life as a blissfully ignorant dumbass--is, like oxygen, iron, and love, escapable only by death.

But a blog post? He'll, I can skip that. Right? Right?

So I did.

Some of you gave me shit, and rightly so. One particular friend held himself to a monthly text:  "___ months and still no new post. I hope you are OK." You don't know this guy, but I do: that was impressive restraint. Some of you just broke the 'he's using the blog to keep people informed, leave them be to fight the disease, don't bug them at home' unwritten rule and just started calling: "you guys OK? What's up? No posts in a while."

And I ignored it all. Sure, the occasional 'I should do a post.' But not with much conviction.

And you know what? I'm allowed. I know that.

But it doesn't make it OK. I made some sort of compact when I started this. It was all about me--shocker--but it was a controlled information stream that may have helped me get through the process with a bit more sense of control or discourse on the battlefield of my marrow, and was also a way to keep people informed without exhausting repetition or the blown-out conjecture and falsehoods of repeated tidbits passed mouth to mouth, or inbox to inbox.

And I am sure I had my reasons; my psychological weaknesses or self-oriented desires to pretend just a little that I was merely a regular schmuck again for a while.

But that's bullshit. And I hate when people pretend that bullshit is fact, especially when I do it. Unacceptable.

So herewith is my apology for bailing on this for two months. Or more, or whatever.

I'm sorry. I really am. I feel bad and I let myself and others down, and I am sorry.

And since I mean it, I can leave it behind: Cancer Lesson Five: dwelling on things can kill you.

So we're done. Back to business. Things have been pretty good.

I'll briefly start in the right now just so there's no silly, bad-movie suspense that I am writing this as only a jellied mind suspended in a mildly green liquid in a clear cylinder somewhere, my body eaten by the disease and my thoughts and spirit--'he had such a strong (sniffle) spirit'--reconstituted through a miracle of modern science so that I can teach the children of tomorrow the dangers of ignorantly getting leukemia, which we have since discovered is contracted solely by having good sex and/or not returning movies you rent until well after their due date.

I am typing this on my cancer-present iPad. I am looking out over the swollen Missouri River--N prefers to call it 'full,' like it's a friggin' soup mug--as it enters the town of Great Falls, Montana.

We're at my aunt's house, where I am still coming to terms with the devastating fact that my eighteen year-old cousin has longer hair than I ever did and likely ever will--and wears it pretty well, the snotty asswipe.

I am taking an antibiotic started yesterday to counteract the slight fever that seems to have come along with the really gnarly (and I say that word in the positive sense) bug bite that has produced a 'pustule.'

C'mon, 'pustule?' That's gotta be one of the best words ever. All the cool kids have a pustule! It's all the rage!

We were scheduled to get bloodwork in conjunction with Jim's regular appointment with his myeloma guy in town--we're models of efficiency--because I have been out of New York for a couple weeks now doing shit I'll explain later--fun shit, productive shit, and pretty much healthy shit.

So we went in and I got bled in a cancer center that likely uses about as many square feet as the CityState but only has one eight-hundredth the rooms--out West space is not at such a premium, and the building looks like, as N said, a Museum or Interpretive Center, and not a place to go be sick or ingest poison for fun.

So we figure while we'll there we'll see what the Drs think of what has become a fascinating huge red thing under my armpit on my ribs. When it was first discovered--sick or not, I'm a boy: I don't notice things like bug bites or, perhaps, if part of me has caught fire--it had this very cool ring about an inch and a half away from the bite, all the way around. And it was raised up a good bit. And tender.

All in all, I was pretty proud of the damn thing.

So we go to the clinic part of the Your Cells Hate You Interpretive Cancer Center and Museum, and N rightly points out that we should see what nurses think of the bite. Doctors are lovely, and quite valuable, but let's be honest: for any question that starts with something like "whaddaya think this is...?" or "should I be worried about...?" you go to a nurse. They often don't have a specialty because their specialty is 'everything.' 

And, like a badly rehearsed high-school play, all three nurses to whom I present my little cutaneous Krakatoa make this mildly-to-deeply unnerving 'ewww!' face.

Note to whomever: anything that skeeves out three straight chemo nurses leads directly to medication, if not excisement (credit to my aunt Jean, who just provided that word in the space of my brain fart).

OK long story short, I've got a seven day course of antibiotics on top of the current chemo and general fistful of pills. The fevered nights seem to have broken, and later today, through the hook-up of an eighty-nine year-old gent with access to the airport, we're all gonna sit On The Goddamn Runway and watch the Blue Angels do their show for the Montana State Fair. So things are good.

I have one particular friend who hopefully, upon reading that line about the Blue Angels, will, with jealousy and indignation, poop himself. Just a little. And that makes me happy.

I have canoed, hiked, played in the South Fork of the Teton River, heard and made rousing Union speeches in Seattle, taken a train across the Rockies, sat quietly with N in lovely places, and run miles and miles.

And I am still not dead.

And I did a Half Ironman.

But, obviously, I'm not gonna get around to that this time, and I wanna get this posted before I find some stupid reason not to.

Talk to you soon. Promise.

Saturday, May 21, 2011

Victory is not boring yet, but is is tiring.




I've been working my ass off.

A lot has happened, so I'll try to skim.

We got back early, as previously mentioned. It took N a couple more days to shake the sinus infection. We'd be walking, or talking, or having dinner, and her head would snick to one side, and she'd slowly lift her hand up and press one long slim finger against the underside of her ear: Eustachean tubes still rumbling, gurgling, and popping, days after we got back. It marked a return to an aspect of our life from before I was diagnosed: we'd get exposed to the same bug, and I'd shake it off in twenty minutes and she'd get stuck with some horrid plague for a week.

While I am sure we'd all agree I'm doing my share to catch up in the medical unpleasantness sweepstakes, I still feel really bad. Maybe even more now. She's endured so much to take care of me--had to ignore ailments and aches and sadness and terror because I needed immediate care. And now that I'm feeling better, she's bogged down in snotville for the week.

We landed in New York off the red-eye and I went into a studio and started the audio-book I was going to do from LA. Three days later that was done. For the first time I read with an iPad instead of paper copy, and it took my reading rate--which was already one of the higher page-to-hour rates around--and shot it through the roof. The producer at one point thought I might have figured out how to read faster than real-time. I'm not sure that's possible, or what it exactly means, but if there's a chance to do it, I will. Or have.

I managed another voice-over job in there somewhere as well, and the first weekend in May was ushered in with relaxation. Oh, and a 2000 yard swim. Oops.

Monday I did some more auditions and work, and in the evening I was the Chair of the AFTRA New York membership meeting, where the union members from the New York area come out twice a year and get updated on the inner workings of the union, what lies ahead, and in this meeting's case get to hear the candidates for local and national positions give speeches.

I was running for reelection as a Local Board Member, Local President, National Board Member (I'm a VP but that gets voted on at AFTRA's highest confab: Convention) and a Convention Delegate.

All unopposed. Which drives N friggin' nuts. She wants to join the union just to run against me. Just on principle. If she got the gig she'd probably shoot herself in the face.

I would love to think I run unopposed because everyone loves me. And there is a facet of it that ties into the fact that I am clearly busting my can for the good of the membership and--ego-maniacal as I may be--don't really want the positions because of power or whatever. There are blowhard a-holes in any group who only really want positions of leadership because they are empty and useless and it makes them feel good. But AFTRA has a very small contingent of those people, happily.

N had work all week as well, mostly prep for her trip to the South to teach at the brief-residency program she has been a professor at for about a decade.

Tuesday we went to the Clinic for my Biopsy, Vincristine, day One Prednisone, and bloodwork.

Wheeee!

All the goofy not-agonizing stuff taken care of, it was time for the core sampling. There was the usual chitchat, some mixture of everyone overcoming nerves and trying to distract me. But I was really not into it.

I have discovered that one of the first real hurdles to 'reintegration into the wild' is the shift in perspective in terms of medical and physical unpleasantness.

When we were in the thick of it, when any given day could bring three needle-sticks, a bout of nausea, and a Live Direct From Hell This Is Spinal Tap! (kinda feels nice to write that again), I was very much in a place of "OK, what body part do you need? Where will I be invaded next? Yes, I feel the piece of steel deep beneath my skin...is that a new tie?"

But as things seem to even out a little, and as I therefore have more and more mundane time between medical events, each one is allowed the pre-heating time to grow very unpleasant in my mind.

When you aren't getting holes jabbed in your bones and spinal column every couple of days, there is time enough to really concentrate on how shitty each procedure really is.

So, for the first time in a long time, as we were walking into the Hospital, I looked up at the looming CityState, pushing the clouds aside under a 9/11 blue sky (I can say that, we were there, so stuff it) and I really just shouted into my own head "I don't wanna be here I don't wanna be here I don't wanna be here."

I had to latch onto the simple physical tricks that the therapist gave me in our third or fourth session, and that N repeated to me many many times in the opening trimester of treatment: keep your head up, keep your chin up, feel your feet hit the ground. Just be there.

Dropping trou and hugging the pillow to my face (prison-rape joke, anyone?) was just really bad. Tense, keyed up.

The Dr went through his normal procedure and was a calming factor, and everything went well and was as I remembered it.

But the pull. The soul-stealer. Oh christ. That was brutal.

I don't know if he got a better handle on the meat, or what, but the pull itself was faster and lasted less time than before. But god damn did it hurt. Just plain old 'ow goddammit OW!'

I did that quick sucked-air-through teeth thing, and I am sure the muscles along the bottom of my back all bunched up like a mother. The Dr wasn't even finished the pull, and I wasn't finished the hiss, when he said "Oh yeah, you're still in remission!"

Let me make it very clear that, in the very near past, I would have thought that a Dr telling me I was in remission--even from a somewhat admittedly home-remedy viewpoint like 'the more it hurts, the healthier you are'--would overcome any negative feelings I was having.

And, yes, I did hear his positive ejaculation (snicker snicker) and feel good about it somewhere in my head.

But mainly, I was just trying not to writhe and trying to find the capacity to focus that my eyes had lost. I could too clearly feel the warm, meaty worm of remiss me getting hauled, unwilling and under extreme duress, from the warm bone-hole it had been born to.

Party.

OK, gotta speed up; still have a LOT to cover.

Bloodwork was fine, Vincristine plopped happily into the vein, N didn't have to run and get me food because it all went pretty fast and we were home by the middle of the day.

There followed a week of work and life and whatever normalcy looks like through the jittery high-speed camera work of Prednisone. I stayed up late doing some really important work like looking at my stocks online for forty minutes without once thinking or doing anything at all. Or going through all the mp3 music I have on my desktop computer and adding a 'rating' so that I can have a visual sense of whether or not I like the song. You know; God's work.

The weekend was a trip to N's mom for Mother's day and a call to my mother from there, as well as a check-in with my step-mother. And we did some domestic stuff that had been hanging out there in the wind not getting done. Housework, etc. Kind of nice and boring. Task-completion, leukemia-independent. Hoo. Ray.

The following week was more work, jobs, auditions, N prepping for her trip, and another clinic visit. Since N would be out of town for a while and I would be on my own, she felt better with frequent bloodwork to make sure I was staying correctly bracketed by the maintenance.

Oh, and I was gonna run across New York state.

There is that.

What seems like three lives ago, I was motivated to go to the doctor because I had extreme rib pain, and because I had performed very badly--in relation to my usual fitness level--in three races at the start of 2010. In the Coogan's 5K, the Wurtsboro Mountain 30K, and the Manhattan Half-marathon, I was approximately a minute per mile slower than the pace I had grown and trained to expect from myself.

Get it looked into...congratulations! You have leukemia! Tell him what he won, Charlie!

We got me into the hospital for Induction chemo by the third week of April, and the first race I had planned to run--but would be missing in favor of Drano to the aorta--was the Ragnar Relay.

Ragnar was a badass from Norse mythology (something like me in my own mind).
The Ragnar Relay, though the route changes a bit each year, is an approximately 190 mile race across the right half of New York state.

In 2009 I did it with a 12-person team, composed mainly of my running teammates, and we finished the 188-mile course in just shy of 24 hours. Sleeping intermittently or not at all, driving support and/or handing water and food and headlamps to teammates when you are not running your own legs. It's a blast. A crazy, eventually foul-smelling blast that tests your ability to persevere, gets harder as the night wears on and each of your three running stints happens with less rest and more soreness. It becomes the kind of thing you have a vague memory of before it is even finished, but you know it was incredible and you know you are insanely proud of yourself and your teammates for finishing.

For 2010 a smaller group of people from my running team had set up to run it as an Ultra: six runners instead of twelve, with each runner doing two stints back to back, so you still have three stints, but each is about twice as long.
Plans were made and headlamps re-stocked with batteries (each runner does at least one stint through the night, wearing a safety vest and seeing only the bobbling cone of LED light spearing out from their headlamp as they traverse back roads and reveler-filled college towns along the Hudson). I was all set to run it with the team.

And I had the gall to go and get cancer. Annoying.

So one of my earliest memories of having been torn from the life N and I didn't even know we were taking for granted every second was sitting in the hospital bed, still very new to the crawling horror that is the sensation of Induction chemo, feeling veins rebel and the body begin to erode, twitching on the pred and watching my leg muscles atrophy by the day, and watching N pierce the faces and actions of everyone who came in the room. Getting a text from a teammate about how hard a stint was, or some hilarious tidbit about one runner getting a little lost and then screaming at his support car for the next mile, running faster during his diatribe than he ever had before.

I'm staring at the distant lumps that are my feet, under the blank white hospital sheets. I want to throw up, I am stuck in the thick of fearing for my life like a marker stick in the marsh-mud at low tide.

I remember crying a little as I read a text that they had finished. I remember N leaning my head to hers. Telling me it'd be alright. We'd make it. I'd run it again.

The 2011 race was last week...

...you're goddamn right I did.

I haven't clocked the exact mileage--this year taking a more 'just keep going' approach as opposed to my mileage OCD of regular runs. But somewhere around thirty.

I asked for some of the hilly stints. I knew I would be slow, but I didn't want it to be easy (not like any set of legs is easy, but I didn't want to return to the race and have special dispensation).

My team knew the whole story. They were very supportive, and were prepared to take over for me if it proved too much, and they asked all the right questions about medication and preparedness and how I felt and everything. It helped N that I could tell her with all honesty that the team was super-aware of my condition and wanted me to run as just another teammate, but were prepared to baby me and care for me and support me as a guy just struggling out of the most hellish and debilitating year of his life.

And N was fucking amazing. I could see in her eyes every single time the Relay came up--every time she thought that not only would I be attempting this crazy piece of shit, but that she would be hundreds of miles away, working--she was devoured by worry. By anger that my go-for-broke physical life was returning too fast, that I was jumping back into it without any sense of safety, of understanding my limitations, that I was being a damn fool.

And she's right to think that. Has every right. Hell, two weeks earlier I ran more than eleven miles in LA smog because I felt like it, and got myself sick and scared her and jeopardized our whole vacation.

But she knows what matters to me. She knew that not making it to the start line of this, the first race I missed last year, would really damage me. I had already pulled out of the Wurtsboro Mountain 30K because I knew I wasn't up for it, and she saw how that hurt me.

But she also saw that I pulled out of that race. That, momentary lapses of intelligence aside, I was trying. Trying to incorporate the new truths into the old life. Trying to make it all make sense. Trying to be alive, to feel alive, but also to stay alive.

And the day before the race, we got the word: Marrow Clear. Still in full remission. Still on track. Good to go.

So she let me go. Worried, admonishing, with many an instruction. But she let me go.

And go I did.

The first leg was the hardest of my three. The most hills and the longest. I knew that. Kind of welcomed it. One teammate left the start line, running strong across Yasgur's farm at the Bethel Woods Arts Center, and a few hours later I took the Relay token from another teammate, and off I went.

And it sucked. And it was glorious. Hills rearing out of turns to laugh in your puny, sweating, shuffling face. Hills of gravel back road, and crunchy road shoulder, and never-ending white lines stretching across more fucking hills.

By the last third of my first leg, I was slow and I was tired and my legs were burning. And I knew somewhere back in my head that it was one of the most wonderful feelings I had experienced in a long time. It was a superlative kind of torture.

And I started talking to myself. Simple barked orders to keep my head up, keep my fucking chin up, feel my feet hit the ground. Just be there.

I started thinking that the last time I had heard "I don't wanna be here" screaming in my head, the times I had heard "Just make it over, just get me away, just make it stop" screaming in my head, for the past year, had been about cancer. About poison. About throwing up and breaking my own heart and stumbling into walls on sleeping pills and about staring at the wasting corpse-in-training I was becoming. About trying to jog a mile and feeling my port bouncing, foreign, under my flesh.

I started thinking that I had been through a lot. That I had stuck it out, with help from loved ones and strangers and family and friends. That I had taken the goddamn beating. And I was still here.

I am still here. Still shuffling along, puffing, working, fighting it. Fuck cancer.

At one extraordinary hill, one of the last really mean ones in the stint, I actually just repeated 'you motherfucker' over and over until I made myself laugh. A shuffling leukemia patient, in horridly ugly yellow shorts, pale-to-translucent haven't-seen-the-sun skin slick with sweat, barely running up the face of a hill, murmuring to himself, laughing to himself, and cursing over and over.

Good times.

The two Ultra teammates in your car who are not running do support, leapfrogging you with the car so they can hand you water, or food, or just check on you, or cheer you past, or yell at you from a hilltop, or urge you from a hill-bottom.

I was about a third of the way up this near-the-end beast of a hill, and one of my teammates behind me yelled, having given me water with electrolyte salts in it, fading slowly--very slowly--away as I trudge-ran up and up:

'Fuck cancer!'

And I started crying.

Let's just get this undeniable truth out of the way right the hell now: It is extremely, EXTREMELY difficult to run while crying. I would almost say impossible. One or the other activities wins. Well, one of three: you keep running, or you keep crying. Or you drop dead. Those are your options.

It feels anaphylactic, the way the throat closes. Not just 'hard to breathe.' But a closing throat. Like: it is had to pull into the garage when there's a lot of shit in the garage. But pulling into the garage when the garage door is closed? It's like that.

So you have to get hold of yourself, push the emotions away. The emotions linger just below the throat, vying for space with the bits of banana and Clif Bar one tends to intermittently barf into one's mouth on a run like this.

The emotions kept popping up, strangling me. When I'd think about the year. The battles. N's love and care. Friends' worry. Family's work.

When the finish line of this first stint became almost too meaningful to me. When putting the hardest leg behind me, when completing my appointed stint, when not letting my team down again, when re-finding the control and the power, the ability to make my body heed me, to push it because I could trust it, at least a little, again.

I'd get overwhelmed. I'd start to blubber, and snot, and suck in air.

Then I'd start to choke to death, which very quickly stopped the crying. The body has its priorities in order, and just shuts shit off if it needs to.

So that was the last few miles of the first stint.

I sped up as the transition area got close. I always have a finishing kick, always have that actor's cheesy 'make sure you are running your ass off when they're all looking" thing. It is something I have to work on, because a good runner knows that an extremely hot finishing kick just means you didn't leave it all out on course, that you didn't dose your effort well enough.

But c'mon, I'm a prettyboy dancing bear. I wanna look good if I can. What are you gonna do: gimme cancer?

So I came tumble-sprinting into the transition, turned the last corner, and handed the Relay token--a slap bracelet--to the first runner from the other Ultra van. My team would have a few hours down time. Then start all over again, but this time in the dark.

Wheezing, chest heaving, sweat slick and caked with salt like little white dunes around my eyes, I just started bawling. And I didn't have running as a way to stop.

But I didn't want to stop. I'd earned these tears. These were newborn baby cries, a slick little life yelling at the world, saying a sad, tired, environmentally shocked Hello.

Hello.

My teammates, and some of the members of the 12-person team from our running team, were there. And they tried to give me space, while not going too far in case I collapsed or somesuch nonsense. A lot of them did that "stand near the guy but look really hard at something above your head or supposedly in the distance" thing, that "no, I am not trying with all my might to not know you are weeping three feet from me."

It was kinda cute.

I told them 'You don't have to look away. I'm...I'm--hic--fine with this. This is good. I'm OK.'

I walked slowly in a circle, arms clasped above my head, seeking out a clear breath between sobs. Laughing, crying, wheezing, walking, sweating.

God, it was great.

Our Ultra team covered the 197 miles in just shy of twenty-nine hours. Everyone finished their legs, everyone supported everyone else. We left no man or woman behind, broken in a ditch somewhere. We averaged just under 9-minute miles over that distance. I was over 10 for my first leg, and under 9 a good bit for my last leg, so I didn't drag them down too much. We made it.

I made it. I walked like Yosemtie Sam for three days. But I made it.

I'm gonna stop here, because there's too much more, and even reliving the Relay just now for this post has exhausted me.

I'm exhausted. With a big dopey grin. Good night.

Saturday, April 30, 2011

Life like a pew



We're back.

Early.

The short version is that everything's fine, with a dash of not-fine to spice things up.

OK, back up.

Far too much happened for my long-winded ass to re-tell it all without everyone reading to have stabbed themselves in the eyes before I get to day three, so here follows forthwith a seriously encapsulated version, with a focus on leukemia-related happenings:

We flew into LA, got a cab to our friend John's place. He's doing a play so was not there, but arrived eventually. I'd tell you where we found the key, but then someone might steal his Cleveland Browns memorabilia--not sure why, but they might.

The next day we exercised. N and John went for a hike in the hills above his neighborhood, and I was dropped off on a corner to run down to and through Griffith Park.

John's a lovely man, but he currently holds the world record in not-getting-out-of-the-house. It once took him three days to get out to his car for a trip to the Dry Cleaners. OK, that's an exaggeration. It took him six hours.

Somewhere in the back of my head I knew they would probably not pick me up at approximately 7 miles, as we had discussed. But I'm a macho dipshit and so just figured I would keep on running.

Gorgeous LA day. Hottest day in a while. 88 or so. Dry. Brilliant sun.

The Griffith Park Equestrian Trail is a good metaphor for LA in a lot of ways. Shaded, soft earth, beautiful winding trail along the bottom perimeter of the Park...

...and seven feet from one of the most clogged and exhaust-hurling highways in the United States of America.

So I ran that, and then got onto the regular road on the Valley-side of the Park. Which runs by two graveyards.

Except it's LA, so they aren't graveyards. Each is a "Memorial Park and Mortuary." I bet the tenants aren't dead. They're just on hiatus.

I ran past them. Then ran to Barham Blvd. Took a left, ran up a stupid steep hill. Ran across the 101 (on an overpass: I'm not that foolish) and up a little and then down through the Cahuenga pass. Then over the 101 again (again: overpass) and down to Franklin, where I took a left and ran past Gower and had made it just past the Scientology Celebrity Center (so many cult and idiot and only-in-LA jokes here I'm just gonna leave it) when N and John caught me.

11.34 miles.

Felt great, and to their credit N and John had texted me repeatedly with sage quips like "Stop running!" and "Wait there. On our way." It was all me: I could have stopped in the shade, dug the just-in-case bills out of the zip pocket in my shorts, bought a water, and waited. But I didn't.

Shocker.

The next day N gave a reading at a bookstore in Echo Park, which rivals New York's Williamsburg for being filled with morons parading around, throwing their hipness and chicness out like solar flares from a dying sun. Mopeds, pork-pie hats, chain-wallets on men who couldn't beat up a sparrow with emphysema. It was all there.

But a great crew of out-of-neighborhooders filled the back patio of the store for her reading: family, friends, colleagues, and strangers. A great afternoon.

The next morning I went to get bled at Quest Diagnostics, the 7-11 of blood labs: national, abundant, and a little skeezy.

The right arm poke was a failure, but not for lack of trying. The no-sissies-here full size needle was dug and twisted under my skin, searching for the vein. Then the other arm was optioned, and--likely scared by the excavation of it's partner--up filled the vial.

The Drs had put STAT on the form so that it could be returned and faxed quickly to NY, where it was three hours later.

Or not. It took until the next morning to get results. But I was in good shape, numbers up and going according to plan.

The next day I had a bit of a scratchy throat, and we drove to Santa Cruz in a rented Ford Focus. The car had a renter's governor and therefore only went 80. And whenever you got above 75 it went "Ping!" And when you hit 80 it went "Ping!" And when you slowed down and got near 75 again it went "Ping!"

Luckily, with the iPod high enough, you only heard some of them.

In Santa Cruz we enjoyed a very diverse, pleasantly odd, and lovely Seder with step-family and their friends. And N spoke to a class at the University the next day, after we visited with our step-grandmother-in-law, who we hadn't seen in a while.

Then up the state a bit more to Mill Valley, where N charged into the embrace of her recently-moved friend--a friend who has been wonderful even from afar at helping N through the weight-lifting and war-mentality my illness has thrust upon her.

And I got sick. Totally my fault; some bug I probably would not have even noticed crawled into the gaping hole created by 11.34 miles in a climate twice as hot and dry as the one I've been living in, followed by three or four hundred miles of driving and crossing into a cooler and wetter climate again, and I got me a nice sinus infection.

A call back East got me a Z-Pack, which is a powered-up five-day antibiotic. By the time we picked it up from a Mill Valley CVS I was shivering and weak. Freezing my ass of in the sunny 60-degree day.

N got to enjoy her friend, as did I. We went to college with her and her husband, and getting to know their kids and see their west-coast life was fantastic. But I spent a good bit of the days there in bed, recovering and letting the Z-Pack beat the sick out of me before it took hold.

And we changed our plans. Within a couple days it was clear I'd be OK--that it was an infection but that it treated me like a normal carcass and didn't bring on anything worse. But still, better safe than sorry.

The return flight we got was for a few days earlier than our original flight, and just after we would complete most of the things we wanted to: see friends, family, book stuff, and fun. So we cut the end of the trip short. I would do the audio-book from New York, and we'd be back close to the hospital sooner.

A compromise? No, a defeat. But that's OK. It was a battle we lost, and not the war. Being sick has improved my capacity for the long view.

When you're not sure how long, it changes the value, you know.?

I missed a union meeting and catching up with a friend and colleague in San Francisco. I missed seeing one of my step-brother's shows. N missed catching up with a few old friends. And that sucks.

Things suck sometimes. You deal with it. You take your Z-Pack, and you keep going.

We drove south to LA a couple days later. But only long enough to return the Ping! and borrow John's Prius and drive back north a bit to Santa Barbara to spend Easter with my step-mother and step-brother and his family. A great, easy visit with family, some extraordinarily therapeutic scratching behind the ears of their poodle, and a filling up of certain tanks that had been emptied by the isolation of the past year. We have had family and friends nearby, and they were and are all wonderful, but the sense that you are tied by fear and necessity to a place can drain you. Drains you. Feeling a little more free is a refill.

The following morning I got my next blood draw at a Quest in Santa Barbara. They stabbed at both arms again, and failed on the right again, and the lab tech told me to just give up on it. Too much scar tissue, too many stabs, too many needles. Just offer up the left now, don't waste your time. Don't suffer for no reason.

The right will heal up, hopefully, become pliable again, someday. But not for now. I am thankful that it held up this long, gave of itself to help me get better. This is my blood. Take it.

Then we went to visit my father's grave, overlooking the sea just south of Santa Barbara. Half of his ashes are next to my brother in Baltimore, and half are here, where his wife will rest with him in the hopefully many years from now when she rings the bell and steps out. We walked from his grave and watched dolphins rising and falling as they swam up the coast. The sea will eat the bluffs on which he rests one day. But not yet.

N had caught my sinus infection, so it was her turn to stay in bed. I managed to swap my ticket forward and see John's play, and when N felt a bit better we caught up with another set of cousins and kids back in LA. Full days, roaring through leisure, trying to get as much in as possible.

Which brings us to the above photo. I'm in the foreground--riding unsafely by taking a picture at speed (but just for a second). And in the background...that's N.

Years ago John and I went to the desert to take a day of off-road training, and it was brutal and phenomenal. And ever since we put this trip on the books, I've been looking at a day in the desert as a symbol, a middle finger shoved ardently in the face of leukemia. Dust, bouncing, sand, heat, sun, and the happy possibility of shattering your collarbone: none of that reeks of leukemia to me. How 'bout you?

Our last day in LA was the day we had scheduled in the desert. We managed to squeeze it in. We rode all day, and this time N and John's girlfriend were out there with us, scratching their tread marks in the dry lake bed along with us.

OK, neither one became an immediate hard-core moto-head. But they had a good day. We all had a good day.

Which was important, because we barely had time for a quick pizza and then hauled our bags and our tired asses--N still battling the sinus infection that had latched onto her about a day after it did me--and flew back to New York on the red-eye. Nothing like riding through desert scrub and on the cracked and baked floor of a prehistoric lake, and then sleeping in a seated position for three to four hours as the air pressure plays havoc with your sinuses.

That doesn't sound much like leukemia, either, huh?

I went to a Quaker school, and I was raised as secular as a minister's son can raise a boy. The times I've sat on the wooden benches of a house of worship, it has been in a Quaker meeting. Where truth rests in silence, and where there's no pulpit, no didact, no hierarchy.

God is a ghost story, but a quiet room and a moment to reflect; those are precious, no matter what you believe.

Life is like a pew. Even with a bit of a cushion, it's hard. Rigid. Unforgiving. Designed to make you pay attention, to punish you for losing focus.

But that's the seat we're offered. So sit the hell down. Find your center. Think your thoughts. Then rise, and keep going.

Friday, April 15, 2011

I'm Leaving on a Jet Plane -John Denver



Oh babe I'm psyched to go.

It has been a while, and no gnus is still good gnus. I've been running, biking, swimming, TRX-ing, eating, sleeping, crapping (c'mon; it's a valuable indicator), and working, among many other things I fervently wish to some day once again take for granted.

But this is still each morning:

Wake up.
Am I alive? Check.
Breathing? Check
Feel basically normal? Check.
OK, let's trying sitting up, shall we?
Head rush? Nope.
Dizziness? Strange aches? Neuropathy? Nope.
OK, let's head to the living room. Are there Froot Loops?

The am-I-dead? checklist slowly fades over the next couple hours, usually, but pops in like an unannounced grandparent every once in a while during the day: at the top of a flight of stairs (heart gonna explode? Nope), after a gorgeous and weighty styrofoam box of street-meat (will that four pounds of lamb-gyro-platter-yellow-rice-white-sauce calcify or inflate my pancreas?...Nope), etc etc.

My numbers did not plummet after starting the chemo again. Nor did they elevate. So I am still on the 6MP every other day, and have added the half-dose Methotrexate (7 pills one week, eight the next) back into the schedule.

Wednesday I felt a little crappy; and the world stopped spinning.

The Methotrexate roils the guts, and hits in a kind of small swoon of unpleasantness over the course of a day or day and a half. Then it passes. Usually. And it is all bearable. Usually.

Tuesday I was running and felt a little cramp-y twinge-y discomfort. Nowhere near far enough from any of this to not immediately think in at least one quadrant of my head that my liver was about to shear from its moorings and rifle out of my body like a rotting plum shot from a cannon, I tried to remain calm. Slowed down. Ran through it.

And it passed. And I felt fine and did 7 miles total that day. Good stuff.

Wednesday I felt a little less good, so took the day off exercise. And stayed feeling just the slightest bit not good for the day. Reining in terror, muffling hurled self-diagnoses, breathing deep: in through the nose and out through the mouth. Trying not to have everything else in our lives blanked out by worry, by the sink-stomached sense of preparation for a hospital trip, or bad news, or anything.

And around 4 I started to feel better. Got my appetite back, at a late lunch bigger than my wife, and by 8 felt 'normal' again, and had trouble getting to sleep because whatever energy had partially abandoned me during the day roared back and I would have stayed up all night on the computer if N had not admonished me not to.

So it was nothing. Well, not nothing because everything is something, and of course there's the off chance that four days from now my neck will fall off or my capillaries will self-shred or something, and as I fade from existence some placid-faced medico will lean over me and say "you didn't happen to have stitch in your side four or five days ago, did you? Hmmmmm. I see...Oh1 Look, he's an organ donor. Daniel, get in here! I've found the vas deferans we've been looking for!"

But I have to wrench myself, and N has to wrench herself, away from the worry end of that. It was nothing. I'm 'normal' now enough to maybe have caught a little bug, fought it off, and moved on. Or I had some bad shrimp. or Whatever.

Sigh.

We were in Baltimore last week. N was a visiting scholar at my high school, and she was miraculous. Teachers who were on panels that agreed to suspend me when I was a student, teachers who opened their intros of her with "...she's here because she's married to a Friends School alum, though my first question to her was 'what were you thinking marrying that guy?'" now watched, rapt, as she connected with kids from grades eight to twelve, told her story, teased their stories out of them, had other teachers and administrators taking her writing exercises, scribbling furiously to find a sliver of truth in their lives and work that might resemble the slivers she assembled into her book. And they did it; great beautiful pieces of lives landed on paper, were read to each other, created moments when young men stopped snarling and twitching and just looked up and out, eyes clear, unabashed by their feelings, and young women pushed past hair-flips and peer-fear to lay out a line, a truth, a sadness, a ferocious courage, on a page. 'Proud' does not have enough letters to be a word big enough for what I felt.

And we were in town to collaborate in a surprise 40th for my oldest friend. I actually had to fake taking a dump at one point to keep him in his house long enough for the group to assemble and prep at the bar around the corner. Not that he was in the john with me--which would have made faking a dump a much more acting-intensive event--but he wanted to leave early so I had to stall. But it got pulled off, and I think he was really touched. He slowed down when he entered the bar and this varied and thrown-together mob of what a human's life looks like in the faces of those we draw to us starting yelling Happy Birthday to him. He slowed for a second, almost stopped, then picked up the pace and went into the collegiality. I was behind him so couldn't see his face, but he's got 'stoic' pretty nailed anyway, so that wouldn't have been much help. But I think that slowing down was a moment of being surprised, and maybe a little overwhelmed, in a good way. Awash in the good cheer of one's circle. Good stuff.

And in an hour a Town Car will trundle N and I to Newark International Airport, where we will board a plane and go to California for two weeks. N has book tour events, visiting-scholar gigs, and some deeply missed friends to hug once again. I have some union people to check in with, at least one audiobook to narrate, and friends and family up and down the shuddering fault lines of the Golden State to visit, show I am not dead, hug, barrage with endless talking and jokes.

You know: a trip.

It will be the first time since diagnosis that I have been more than 207 miles (Baltimore) from New York Presbyterian Hospital.

The City-State recedes.

I have to get bled by some random lab tech on Monday, and the Monday after that.
Fax the results to NY, talk to my Drs. Hopefully continue on because everything's fine.
Maybe get back east as fast as we can because everything's not.

On a jet plane. The first time since diagnosis.

Which was one year ago. Exactly. Today.

Three hundred sixty-five days ago I became a patient. My, our, focus shifted irrevocably onto a single glowing hate-seed of disease and shattering uncertainty.

Nothing will ever be the same.

Three hundred sixty-five days ago, Tax Day 2010, in an act of betrayal for which I know myself well enough to be sure I will never be fully able to forgive it, my own body, my own fucking cells, the ninth and eleventh stalk-ends of my own fucking genes, turned against me, slapped my focus, owned my ears like a dog-whistle.

Stole me.

Instead of returning to a musty apartment in May, we're returning to a corkscrew to the pelvis, a syringe of Vincristine, and a handful of steroids.

Wah wah wah. Life's a bitch. Quit pissing and moaning, you friggin' sissy.

Shit happens. And then more shit happens. Now finish packing; the car's coming.

It's gonna be a great trip. I was scowling writing that last bit above. Then I stopped. Just started to think about traveling, seeing family, friends, somewhere else.

And I started to smile a little.

OK, Gotta go.

Sunday, April 3, 2011

Victim to the breeze



This photo isn't all that interesting. And neither am I.

God, that's nice.

If you are a knock-on-wood type, get going, because I am about to bullhorn the jinx-spirits with extreme prejudice:

I think things are going well. I think it's gonna be OK.

Now we'll pause for a second to see if a tractor-trailer swerves off the West Side Highway and somehow flies three blocks over and three stories up to smash through the walls of our building and kill me...

Or we'll wait and see if all the radioactive bits in the air that poured from the Daichi nuclear power plant in Japan will re-form into one super-glowing fist-orb of gamma death and spear through the atmosphere, city, streets, walls, and air directly into the base of my neck, instantly melting me onto my chair as either a globule or a stain (depending on whose Spinal Tap drummer-death version you prefer)...

...

OK. I guess I'm OK for a minute or two.

In a few good films--and a lot more crappy ones--there is a "Spilled Sheaf of Papers" moment. In general, this is a moment when a character in a film, overburdened by a large stack of paperwork--often extremely valuable to the character's continuing states of happiness and/or employment--either stumbles or is caught by the wind, sending immediately and irretrievably mixed pieces of paper flying into the air, across the plaza of an office complex, or (in films where the filmmaker really doesn't care about the American audience's need for tidiness in storytelling) into a rain-soaked gutter.

There are basically three reasons for a Spilled Sheaf of Papers moment:
1-Show a protagonist at the end of his or her rope, shattered by life, thrown to the wind.
2-Give an excuse for an attractive person to come to the protagonist's aid, usually leading within minutes to an 'abstract' shot of hands clutching their fingers together on rumpled sheets because American movies rarely show actor's pretending to orgasm--or if they do, it is embarrassingly bad. [Note: Steve Railsback and Barbara Hershey share a really good, elegant actor-gasm in "The Stunt Man," a film everybody should see].
3-Show how fragile everything is: puff! and it's all gone.

The most recent one I can think of is from "Ghost Writer," the Polanski film where Ewan MacGregor tails Pierce Brosnan while trying to figure out a lot of stuff. The last image is a sheaf of papers blowing down a street. I think it was meant to show Reason 3, but there was a touch of Reason 1 in there, too.

I'm not the protagonist in this barely-held-together parallel I'm drawing. I'm the papers.

And it is kind of nice.

Health update:
Swallowed the fourth 6MP of this attempt at Maintenance today. Every other day, 50mgs. I feel it a little: fatigue, some stiffness in my joints, etc. But just barely. And I rode a bike 23 miles or so yesterday, so there could be other reasons for those symptoms.

As you can see above, my hair has come back. I shaved my face yesterday, and the hair on my skull is oddly baby-soft, which goo-goos my macho a little, but what are you gonna do?

My most recent blood work was good; numbers higher, nothing seemingly out of place, thrush gone from my mouth.

I didn't seem to have the prednisone crash, which N and I feared quite a bit. I came off the Vincristine, then came off the Pred, and I felt tired from having been up and buzzing on 'roids for five days, but nothing psychological, nothing deeper than expected. Nothing even remotely like the horrors and weeping and lost-soul-in-a-blender of last time. Just a groggy morning or two and then back to whatever normal is this month.

N was in Houston for the past few days, teaching and reading and speaking and visiting a dear friend. And I did not die or crash or melt or unknowingly fart my duodenum into my undies while she was gone. Another brick in the wall of thinking we're doing OK, making progress.

Tomorrow we go back for blood work again, and I will take a half-dose (only 7 of the friggin little pills) of Methotrexate.

The Drs are still being conservative, and I am thankful, and I am curious. I think they still feel that the Maintenance dosages in their books/experience/habit will be the right ones, but I was not healthy enough and/or other factors screwed it up. So they will slowly and conservatively edge the doses back up until I get to a sustained maintenance level: 3.5 white blood count and 150 platelet count, or thereabouts.

I think my 6mp sensitivity is very real and will mean that I reach those numbers at lower doses. But I'm not certain, any more than they are. And I have grown stronger in many other ways during this no-or-less chemo time, so maybe I can take their doses now.

It'll be interesting. We'll see.

It is nice to think that, without any attendant terror. Because they'll stop when my levels are 'right.' Not when their doses are 'right.' We're confident of that. Which is very good.

This week I only managed 8 total miles of running. But I swam, and I rode, and I did some TRX, and I had a week of auditions and unionism and work that felt very like what my body remembers as a 'normal week' from before diagnosis. I was a little beat today, but beat from effort. From living; not from not-dying: those distinctions are tiny, but very powerful. Like fleas, or May Lou Retton.

Biking yesterday, I passed over a section of new path that was installed along the Hudson after my diagnosis. It is too far north for any of my runs outside so far to have gotten me there. Friends and teammates who run had mentioned it, reported on it. I saw it from a car window a couple times. I yearned, I pined. I probably whined.

Yesterday, I rode up it, rode under the GW bridge, rode up the hill and went to the Cloisters, and turned around and rode back, passing over the new section again.

Smiling ear to ear, even as I cursed the headwind and tried to stay in an aerodynamic riding position. Ear to ear to be back out there.

For the first time in a while, I am the sheaf of papers, and not the protagonist. I'm just part of the scenery, blown around, maybe rained on, maybe picked up by attractive people who will sort me back into my correct order, and then leave me on the credenza while they lock lips and disrobe on their way down the hall and around the corner toward the bedroom--careful to lay out flagstones of clothing for the camera to follow later during the 'nudge nudge wink wink look where they ended up!' tracking shot.

As a performer, of course, being part of the scenery is completely anathema, horrid, humiliating, and shitty. I have already caught myself bemoaning the loss of drama that used to follow me into a room; when nobody was sure if I was gonna make it, gonna make it back or not, gonna pass out in their office because they didn't usually converse with people that particular shade of see-through.

I'm human, flawed, and sometimes pathetic.

Almost, at times, the Fool.

I still have my foibles jauntily hung around my neck like Mardis Gras beads on a topless drunk chick. And so, for moments at a time, I miss the excitement of everyone turning when I shuffle into a room because, fer fuck's sake, that guy's got CANCER!! Or the sound of spines snapping as people bend over backwards to accommodate the fourteen minutes I can spend in the real world before partially decomposing and going back to my flopped existence.

And I am not pretending for a hot second that we're anywhere near done with this. Maintenance has not been figured out, I've got two full-blown Hyper CVAD poison-chugging parties coming at me in August and February. I could relapse. I could step on a nail while my counts are down. I could take Methotrexate tomorrow and have it disrupt my innards like logic disrupts the Palin household.

But, this past week or so, in terms of my health, things have been...regular. Normal, even. Hell, I think some of it has been forgettable, but I can't remember for sure.

And while the performing bear weeps at the silence where applause should be, the rest of me has been smiling.

Ear to friggin ear.