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'être: 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.

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.

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.

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.

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.

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.