And starring Greg Evigan as BJ McKay and his best friend Bear! Right after Fall Guy!

For starters, I apologize for the formatting. A lot of different tech toys are being employed across state lines to get these cables out--I think ship to ship semaphore gets used once--and the time it'd take to smooth it isn't worth it. So these flaws are not proof of any failing health or mind...Ok, so we'll start there in a nice snarky place, and we'll end there also. In between there could be some...dips.For instance, while there were no drones involved,I didn't make it out of the hospital. Pretty much as I was signing the discharge papers I spiked a fever. I stayed at or near febrile but didn't feel horrible. Friday night I convinced N to go home and sleep, partially so that she could be there to let in her mother, who was coming into the city nice and early to clean our place. Along with an impressive masters degree and a distinguished teaching career, the woman can clean. Innate or installed, she makes the Scrubbing Bubbles look about as insubstantial as they really are. When N and I were first dating, we'd go out with her mom and I'd get this strange tinnitus-y sensation. I'd lean over and ask N about it and she'd say "that's the sounds of millions of grime molecules suddenly crying out in terror, and then being suddenly silenced."

The Force is strong in this one. Anyway, while N is sleeping and Sheila Dirt-Slayer is heading in, my mind is closing down shop. I awaken sometime in the morning immediately aware that something is very very wrong. I'm in an unfamiliar room, and my head is not blurry as much as shaken, like what had been a hunk of meat in my skull had become three fistfuls gravel. Things start to solidify more as I lie there. Because I'm sick. Very sick. Not the this-hurts kind but the urn-of-ashes kind. I'm lying flat but it feels like my feet are higher because my head is too full, but what it's full of is mostly a mystery to me. Almost everything is a mystery to me. Mostly: me. I start to panic.

I should tell her. Who? Her. Who? The one, my rest of my life, the breakfast and nighttimeand couch and driving and Who she has hair that Who if I need Who something I'll Who defend I Who love Who I'll Who miss will be Who so sad if I go away I'll Who be so sad Who I'll be Who she is Who am I? Morning is coming but it's getting dark. I think my eyes are rolling like a scared horse. I have lost her. I have lost N. I have lost almost everythingbut I'm fixating on her. Because she is where I go in crisis, or where I go first.

There will friends and loved ones I'll worry about losing soon enough. But my mind is pulling back from me like I repulse it, so I can't even get past the first thing I need, which is what I need most. Strangely, larger muscle knowledge and basic knowledge is intact, so I swoon around in thebed until I can find my phone. She'll be in there. I guess it was still so early that I  knew not to call, but in trying to text I deleted every text I had saved, ever, from anyone (which isn't much as I clean sweep a lot, but still, I didn't mean to). I sort of snap out of panic into a moment of clarity that I am about to delete all my contacts, and it brings greater clarity and great terror. First the confusion and then the realization and then the search for her: it's the rabbit hole. I have always hated that metaphor because it is overused and because I'm in union politics so it happens a lot. But it is  apt in this case.

I'm tunneling further and further into one bit of the fear, to the exclusion of the other juicy terror I could be enjoying. But I need clarity, and I need to not flail pursuing it.That moment of seeing the possible delete of contacts was also apt: if I fuck up whatever meager brain efforts I have, I could be alone. And crazy. To me on the inside of this, it's as serious as a heart attack. I hold the phone, but don't go through anything. Just think. In a way it's easier because so much in my mind isnt accessible; it's like I only have maybe fifteen blocks to arrange in a vast black space. But imagine each block weighs eleven tons, and is either screaming,inhaling like a storm, or crying.

Favorites! I know there's some sorta favorites thingy somewhere. She'll be there! I check the phone, find that, indeed, the actual phone part has favorites, and I see her name. Andthe block that was inhaling stops, because it was sucking the universe through its baleen,sifting for that, and that alone. I'm crying. I still think it's too early to call. NOW I'm polite. Using the info, I go text her. I send one. I think it says what needs saying.  s n k

She asked me later, when I was partially back, if I had meant I wanted a snack, and I saidI had wanted her to know snakes were bad. Which proved I was only partially back because snakes kick ass and I have cared for them through long happy portions of my life. Ok, so that text goes off and I get another clarity bomb. Whatever the hell you thought, that last text was nonsensical at best. You send another like that and you may kill her with panic and stress, which is even more impolite than waking her up. I work for at least half an hour on the next one, and I force myself to stop and look away and close my eyes and breathe and look back, and that helps a lot because 8 out of 10 times the word I thought went down there wasn't even close. And it's all blown by the wind of Death's scythe. I'm not saying I'm dying, I'm pretty sure I'm as able bodied as whatever, but my mind is going. It is just that the image of Death's scythe makes sense here. It's this almost comically enormous blade and because Death's a ghoul his slashes pass right through, just tearing out bits of soul and memory and warmth. There is a universe-weighted-nothing imbuing that scythe, it's like he's wielding the event horizon of a black hole, and with Poe-pendulum regularity his storm  of theft is cutting through this one huddled man, clutching a phone like madmen clutch their plastic bags as they mumble. I've deleted it, maybe out of shame but I've been blurry long since I came back. Maybe N has it. At the end of the half hour:

Hello love. I like of freaked out. I'm scared. Please come up. It'll be ok. I get that sent.

Also around now I'm either clear enough to remember that there are staff and a call button hanging off my bed for exactly times like this, and so there is a staff person in my room. This almost doesn't help because I only know this is a human sent to help me, but I can't make myself understood. Hearing how vastly disparate what I want to say and what's coming out of my mouth are is ripping parts of me away from me. And my memory could be flawed, I could have been even less lucid. These are professionals though and so the person, I think a woman, either calls for someone appropriate or stays herself, and just talks me down and does what she can. And she sees the phone in my sweaty, platelet-free hand, and she helps me find N, and either overrules my earliness argument, or she doesn't know what the fuck I'm saying, or something, and the phone is ringing and I hear her voice and the floor drops out because there it is: contact. A realness, an actual, a goddamn thing that I knew was out there and now here it is. But the floor drops too because now that I made it past the first quest, the next dragon rears: I am so, so, scared. Of nothing.

When N physically gets to the hospital soon thereafter, there is a moment I wouldn't put in a movie because it's just too cliche. I see her and she holds me and I'm overjoyed and also so so scared because I know that I found her but that also she's the only thing I've found and I'm not stupid enough to think there isn't a lot more to be found and where did it go, and she's holding me and glad she got me back but just as worried: is this all of me that's coming? Seeing her calms me enough to handle morning hygiene and the like. I know I am somehow saving this experience--I'm sure I didn't know I was blogging because I'd have found the fucker and gotten up to speed, though I doubt I could read then. But the inner lizard brain I have is an actor, so I know I'm documenting. I'm halfway through my toilette and I start to swirl and spiral and it gets bad, and I take a picture. This is the first time I have ever questioned using a pic. I'll show you harpoons in my back and trepidation and meat-stippled ports, but psychic violence is, I  don't know, deeper. Maybe it's a guy thing and I'm just ashamed. But I think it is also that I know there are eyes reading this that care, and I don't want to hurt anyone.The refrain I'm saying, over and over and over, in this photo moment, is: "I'm so scared I'm so scared I'm so scared."

I'll compress now. Over the next three-ish days I undergo almost every test they have, usually around midnight because in a fully functioning hospital with a fully functioning ER, you are rarely as important as the 'this guy gets this test or he dies' patient. I'll be honest and say I resented the wait anyway, but I understood it. Except the head CT. We got to know a certain neurological resident (natch) pretty well, and our introduction to her led to one of the few amusing moments: we needed the sign-off of her one-year-younger superior, who was apparently a stickler ( I wouldn't put this in the movie either: she had a German accent) the medical team worked in a lovely harmony of half-truths and heightened aspects and downplayed aspects to present me as exactly the kind of case that needed top-code 'possible stroke' but not interesting enough that the superior wanted to attend the CT which would put me at the back of her schedule. All boxes checked and off to the one test that did not suck from beginning to end. They used the stroke code to get me in early, but they were not pulling from thin air. I was muy broken, as they say. I'm sad to have missed it because apparently I have an eloquence even sans lucidity. In my answers to their questions, when I wasn't making sense, I was often either threading together lovely strings of words, or bending the few words I did have around and around to actually get a semblance of an answer out. The Night PA said that right at the start when I was farthest away I said some lovely things. Blather, but lovely. But I was busted. I remember certain passages with brutal clarity, and the rest is like cartwheeling down the midway of the state fair and randomly opening your eyes every once in a while--vastly full, overfull images, canted at all angles, some bright, some full of choking kicked dust, some horrific, or out of place, and a few dizzy patches of river, and sky.Because that kind of blank-out is clearly neurological, they got the neuro trick pony tests out a lot. There were two kinds: the kinds I won, and the kinds I hated.The kinds I won were physical. These are designed mainly to test for balance in the system. Not like standing on one leg, but balance between the two sides. Never have I had so many different people request that I squeeze their finger without anyone involved farting--felt like such a waste. But I squeezed till they winced, pushed feet up, then down, puffed cheeks, raised and lowered legs, followed pen lights with my eyes, touched my nose then their moving-target fingers (that one was hard because they had a hard time getting me to understand the instructions: I just kept touching their fingers then waiting for them to touch my nose). The ones I lost, the ones that crushed me doubly and sometimes trebly, were word and number tests.'what's 100 minus 7? And again? And again? Then next one?''spell world. Now backwards' that one cracked me because it took me a few agonized minutes, N and random young doctors on rounds staring in polite uncomfortable silence, before I even realized that I could spell it forward and then say the last letter I said, then spell it forward and say the next to last etc etc etc. But that mental gymnastic was hard enough. And all of this coated in shame that's steeping in fear. Word games? Quick thinking? I have prided myself on an easy fast wit and a way with words for as long as I can remember: nature and nurture bring to bear on that one. And to have almost all of it crumbling like saltines before a chowder, and in front of people, was unbearable. Even as the worst of the blackout curtain was lifting.

But lift it did. My MRI was clear.

My CT-scan was clear. My EEG was clear. No stroke. No seizures. Normal brain waves. I got my general in/out lucidity back pretty quickly, then greater access to memory and capacity, then further from the worry that something had eaten holes in my brain. Because something had tried. Ara-C. As I said, this round is the Ara-C round, and they goddamn mean it. I got one hulking bag, like a bull scrotum of the crap every twelve hours, every day for four days at the start--with decadron to make sure it buried in nice and deep--plus each alternating week of my Ommaya skull taps were Ara-C. It's a bad channel, and it's all that's playing. Like congress.Nobody reacts well to Ara-C. My stepfather shares war stories with me about it, and the Drs all acknowledge it as one of the less friendly, but I really hate it. During my runs the first ten months of my first battle I had to self-inject it into my stomach, and even the softening effects of a more self-interested poke, as it were, did not stop me stumbling for a brief but bilious drive of the porcelain bus almost every time. And Ara-C crosses the blood brain barrier. Which makes it very useful in some ways and very dangerous in others. But everyone we trust on my team--and N was extra vigilant during rounds as well as both stealthy and forthright in single contact to suss out about every angle they'd give up--are fully confident it is entirely a side-effect of the Ara-C and that it is temporary and that that high level of Ara-C doesn't come around again. Maybe ever.

So, did I mention the good news: I have influenza!It actually is good news in many ways. As the blackout fears were just barely starting to wane I started up with a pattern of late afternoon to early evening fever spikes topping out in the middle of the night with searing spikes of 39.4--they go metric here but that's about 103 for us revolutionaries. And I have been laid out so much and not moving--often barely getting one lap in instead of the fifteen-lap mile I expect of myself--that I have a touch of pneumonia. Whaddaya get the guy who has everything, huh?But an intrepid PA thought the fact that I was having consistent 103 fevers but was staying lucid and not 'shake-n-bake' (as in lots of high-fever shiver and burn cycles). The PA thought maybe it was viral so she was kind enough to shove a stick up my nose and in two hours I had a nice flu result. The same strain that is in the flu vaccine, which I got this year. That should show you how stalwart a protector a less-than-point-one white count is: shit you're already safe from can hit you.But the viral angle answers a lot of the permanent fever questions, and I am always much more ready to endure something if I know its name. So even as the 103s kept rolling in, I was less hurt by them, and able to start fighting back. I started the second 4-day run of decadron that ends in a Vincristine and Rituximab twofer, and grudgingly admit the steroid has actually helped, fouling up my voice but giving me some strength back and pushing away the chemo induced food-hate that has me hovering at 141 pounds. During initial induction I bottomed at around 136-9, so I'm not carrying a lotta extra around.Though the steroids help me eat, everything I do eat tastes like a mildly off memory of the food plus a solid dose of the inside of a plastic bag. On the upside I have the river view and can watch the barges like a little boy again, things move forward with the official opening of my marrow search by the middle of this week, and my union health insurances seem to be coming through like gangbusters so far, taking at least one worry off the table--but not without the endless aid and tight overview of my mother and stepdad, who have been generously up all week, and N, who is within reach most hours of day and night, and keeping a hawkeye over everything. And a word here to the people starting marrow drives, and attending drives, and staying strong for me and thinking of us and and following and caring and all the human kindnesses: thank you.

But more. It is probably part male emotion shame, but I am my least eloquent when emoting out positively (maybe that should worry me). But, like many writers or tale tellers before I will fix that by brazenly lifting from better craftspeople. Warren Zevon's last album, 'The Wind' was produced while he knew cancer had won and he was headed off stage. He performed likely his best work,'Keep me in Your Heart' possibly one of the best songs ever, elegant like a spade in earth, warm and forward like dawn the day after a funeral. I'm not accepting any such goddamn thing, but I'm turning the lyrics around anyway. And the Quakers, not a band but a Society of Friends, under whose educational tenets I was raised for a decade, use the phrase 'to hold someone in the light' to indicate that you take energy from what you are doing and you place a person somewhere where good can get to them. Quakerism is about as Native as white religions get, it's touch is pretty gentle, and they educate the hell outta you.

So, to the rest of the not-huge but powerful list I thought I lost that vacuum-mind morning: I keep you in my heart, and I hold you in the light.

I will end on the kind of tight humour I prefer even as I ramble; it comes from a union colleague who heard I was laid up and sent it--please dear good god don't let this start the emails. This was a nice gesture, but leave us the hell alone.

OK: A dyslexic walks into a rab.
Good night, Holter

I will gladly pay you Tuesday for some Cytarabine today

Does anybody know what the hell day it is? All I knows is I'm going home in a few hours.

Now, of course, as soon as I finish typing that an Iranian drone built with a mixture of muesli and goat ligament will crash into the CityState and obliterate us all, or Obama will, in his lily-liveried pissing context with the great sub-genius across the aisle, decide that I am an enemy combatant civilian citizen and a really nice drone with cool decals and cross-flow anti-radar soft surfaces will buzz-bomb its way up the ever swirling East River and just paint my snarky ass against the side of the smokestacks on Roosevelt Island.

There was a dolphin in the East River yesterday. Dropped in from up by City Island, apparently. New York: takes all kinds.

So; I feel like shit.

Shit warmed up, smeared on some seven-grain and maybe spiked with steroids. But still: shit.

Enter Cytarabine. Also known as Ara-C.

This regimen (Augmented HYPER CVAD 1B for those following along in their hymnals) is a set of chemos and drugs I have seen before plus one I have not. When the Pegolated Aparagenase was polite enough to try and kill me by swapping my blood for Eggland's Best, I was pulled off that and put on an altered HYPER CVAD, a more 'normal' regimen, for the rest of the 5 months or so I needed heavy chemo. And it worked, buying me an almost 30-month remission.

So now I'm off the wagon and they just want to get me back into remission (systemic, meaning bone marrow, as they have already cleared my Central Nervous System) as quickly as possible.

That involved HYPER CVAD with a really big dose (what the Drs have spent million in research referring to as'Hogh-Dose-Ara-C). Can you hear the drying flesh of my smile crinkle as it creases? Hear the torrent of happy tears?

This CVAD come without the bit of Asparagenase that had been in it, and the addition of Rituximab.

Rituximad had been around for a while and basically targets a newer trait that my leukemia has grown in the time it was shoved into remission. Likely cause by high steroid use (and what isn't these days?), Rituximab targets CD20 cells ( I know; getting boring; thinking about sandwiches) and busts their asses while the remainder of the chemo hits the rest.

I come in for 4 days of the familiar-but-muy-poopy CVAD, then get turfed. I return the next day for Neulasta, a very strong blood-count-booster (Lance's lying whore scumbag ass woulda been tagged for this shit walking to the spot-a-pot).

I go home another day then return for outpatient Rituximab as well as the two parts of Augmented CVAD--Vincristine (the bitch) and decadron (the queen 'roid).

Then we wait a week--N prepped and prepping for any number of catastrophes like Julie McCoy on greens.

Luckily we'll spend that middle week between swats up here at a half-facility run by the CityState. You may recall from posts past that getting to medical care in urgent situations is not only dangerous for me but easily the most hellish period for N's astonishing ability to endure.

So that is the next week. Lovely people with whom I (used to and will once again) run may be putting together another marrow drive/donation. Others may come your way.

For those of you stymied by the age restrictions on BeTheMatch, a German equally capable group dkms.org goes up to 55 and ties into all the same databases. So; old farts, cut holes in some shiny new Spalding tennis balls, pop the feetsies of your walkers in there, and shuffle on down.

Thanks,

Holter

How to do Good

So, this's my head now:



And the shiny stuff is Vitamin E oil to help with scarring, not bad hygiene.

There will be a post soon to fill in holes between "Hey, I'm totally fine!" and...now. There will be a post soon about the shore birds of the CityState and the nightmares they fend off. But first, some housekeeping:

We are back from Houston after four days at MD Anderson Cancer Center. I got another marrow there, met many great doctors, and got tested like an aggressive cyclist at a steroid lab: (EKG, echo, liver ultrasound, lots of blood work, re-HLA-typing for marrow donor search). N, Mom and Jim, and I talked with Houston, with NYC, and with each other. After a lot of thought and research the final decision is to re-achieve systemic and CNS remission at NY Presbyterian with our Drs. Then go to Houston for transplant.

My CNS is clear, back in remission, as of Tuesday. This is good news. I've been keeping up with two chemos per week through my Ommaya. Sandy removed my staples yesterday and gave me another dose of chemo to the brain. Once the CNS gets checked and comes up clear again, I'll go to one Ommaya poison-drip per week until transplant.

Re-achieving remission in NYC is going to be about a 2 month process and during those 2 months, MD Anderson will be searching for a marrow match. Once a donor is found and I'm back in full remission, we go to Houston. Approximately 30 days in hospital at MD Anderson (Texas-sized rooms, a Murphy bed for N, exercise bikes on the transplant floor. They do 900 transplants a year and our NY Drs are fully behind us going there since the post-care treatment is ideal and the trip to the ER much shorter than the Olde-Worlde migration of Chelsea to the Upper East Side, which is the equivalent of flat-boating the Erie Canal with a pole to deliver a mixed load of gravel and dung.

The chemo in NYC to get me back in systemic remission is pretty much the same as what I did after my blood turned to lard. Augmented Hyper CVAD, which is high dose Ara-C and Methotrexate, along with Vincristine and dexamethasone. Possibly also Rituximab which would be the only drug new to me. Same situation as last time; after chemo, I become about as capable of defending myself as a shitfaced lamb with hypothermia and the runs. So for a while I get transfusions till my counts go back up, and I get another cycle of the same cocktail.

Then off to Houston.

As happened the first time I was diagnosed, many friends and family asked what they could do, how could they help, could they donate blood or marrow or brisket (brisket donation is actually a very tricky procedure with a HUGE needle).

We are in the process of getting me matched to some random person's bone marrow (actually allogeneic stem cells from some random person's bone marrow, but that's getting ahead of myself).

It turns out, after rigorous testing, that I'm a white guy (there's a little bit of ancient Syrian archer in a chain-mail tank-top flirting with slutty Scottish curd-wenches in there, maybe, but, y'know, spice of life...) and that makes the odds for finding a match the best they can be, which is good.

It isn't that minorities and mixed-race people are somehow medically less likely to match marrow or have healthy marrow, it is solely that those groups are either the last to be reached out to by the Western Medical Establishment or--in the tale told gorgeously well by Rebecca Skloot in The Immortal Case of Henrietta Lacks--have had their friggin genetic material flat-out stolen and profitted from for literally dozens of life-saving generations by white devils like me and my pasty brethren who are crowding up the registries.

So, if your tan beats mine, get thee the hell to a registry, faster than the honkies. You are needed out there. Needed more.

But to any and all of you who have asked about donating, there are two options:

Marrow registry, and whole blood/platelet donation.

Marrow is the brass ring. All the Drs we have spoken to say that, yes, there is some infinitesimally small chance that one of you would swab for a match and it would match me (and if that happened we would haul ass to the nearest Mega Millions counter). But it isn't crazy likely. Your desire to help and willingness to do so has already created whatever karmic juju possible and I'm drinking from the goodness of that like that horse drinking starlight in A Swiftly Tilting Planet.

But do it. Get on the marrow registry. Think about whatever pain or fear or empathy you felt for me or N or family. Think about the swiftness with which a stadium parking lot of sucking nothingness opens under the feet of people when a diagnosis hits. Think that there's a shot you could be the end of the math-terror-roulette I'm feeling now for some person out there somewhere. Hell, it's literal; think about saving somebody's life.

That beats the shit out of a Hallmark card.

So do it.

Go to Be The Match and register. They are the main group, they serve as a clearinghouse for respected national and international registries, and they ensure that your registration links up to a global system quick and clean.

They will either let you know if they're having a marrow drive near you soon, or they can just send you a typing kit and you can do it yourself.

Not that long ago, marrow donation was similar to when I get a bone marrow biopsy. Flip back through this blog, search under 'stealing a part of the soul.' Like, I mean, ouch, and stuff.

BUT NO LONGER!

Marrow registry is now a simple cheek swab, very CSI, very painless. You take a few samples of cells from inside your cheeks and save the DNA material and send it in, and they do lots of quasi-magical science stuff that the State of Texas Education Board doesn't believe and would rather imply that a middle-aged, bearded, blonde guy in a bathrobe does by pointing at things.

It is something of a cliché, but one of those clichés based soundly in truth, that when you finish doing a truly volunteer act for the sole purpose of bettering the life of someone else, you feel bulletproof and saintly, and, frankly, you deserve it. Seek the rush: be an OK person:)

But DO IT.

My union, SAGAFTRA, just sent out a notice to its members about me and registering, and they ran it by me for clearance after being very generous and supportive by moving quickly to set up an outreach about donation. And in the little press release I said that 'nothing shatters like hope.'

More often than anyone wants to admit, someone swabs a cheek because their pal or family member falls ill. And two, seven, fifteen years later they get a call saying "your are an initial match for a patient with a blood or bone cancer. We would now like to move forward to see if you are a true match: it will require some bloodwork and a little of your time."

And by then maybe the person in your life has made it clear, or kicked off, or borrowed your weed-whacker like three goddamn springs ago. And you are further from it, and it seems to loom less large. So you pass.

'Sorry, I'm not interested any more. But good luck.'

The registry groups can't force you. Nobody can.

Hope floats, Sandra Bullock taught us. Hope is a desert flower that survives freezing freezing nights and blowtorch noons and getting sand-duned under and getting no nourishment, but keeps popping up, tiny and gorgeous and fierce.

Hope springs eternal, no matter how hard dictators and self-interested legislatures and shitty teachers and selfish parents and cruel diseases and drunk drivers and avarice and apathy and awfulness crush it into the ground.

Hope does that. It is, in its way, the most powerful goddamn thing in the world. It can't be stopped.

But it shatters.

For something to be so beautiful at rebuilding, at never giving up, it has to be broken, smashed to bits, over and over. Hope is carbon fiber: strong, but so, so light, and so, so brittle.

You don't wanna be the boot that crushes hope's cold pale neck into the mud, do you? Do you wanna be the fist that slams into hope's cheekbone, which shatters?

At the preliminary discussion of marrow match, they told us that they had found 5 prelims for me. It didn't mean much, because they had to reach out to those five for further info, and the national registry computers were sluggish that day anyway so the initial five might turn out to be many more (I have yet no idea what an 'average' prelim hit might be, if one exists).

But they told us five.

5.

And for the first time in a couple weeks, for one brilliant nano-particle of time before normalcy settled in with odds and possibilities and realism, my chest puffed huge and I didn't feel staples or cranial pressure or chemo or a sore throat or fatigue or concern for N's soldier-stance of protection that was stretching to weeks. I stood tall and inhaled deep and, like a perfect jungle-green sprout in a sizzling black arena parking lot, Hope pushed up through the shit, and said Hi.

So if you're having thoughts of registering your marrow, do it. But DO IT. That's all I'm saying.

I have a personal stake, too. Knowing that my illness caused somebody else to be drop-kicked down the line? I'm sorry, that's unacceptable.

If you don't think you can fully pull the trigger, then you know yourself and there's respect in that, so skip it.

If you want to do the equal or next best thing: Give Blood.
Giving blood's all sustainable an' shit: you can re-do it about every two months. My mother raised me to give blood, and the fact that leukemia has taken away my ability to do so forever really, really, pisses me off. You wanna run a cosmic errand for me? Pick up my baton: a pint or platelets a few times a year, until you can't give any more.

If you have a little more time they actually prefer platelet donation. It's a little more involved, but you can actually give more frequently, I think, and, having been in the hospital approximately a shitload and having gotten platelets with alarming frequency during all this, I know how valuable they can be.

When I was a kid at Friends School our Biology teacher, Mr. Wright, told us all through a professorial beard and a smirk that when you finished giving your pint at the Shriner's Temple up the street they gave you a cookie and a shot of Jack Daniels. When I was a punk-ass youth I would walk briskly to the parking lot after my bled pint and light up a Marlboro then drive my pickup too fast with the window open, because the head-rush was much more intense when your blood level was low.

So, you see, giving blood can be fun for the whole family!

Anyway, that's today's lecture. mainly: thank you one and all for wanting to help, for being willing to help. You can help by getting registered for your marrow, and by bleeding. Good stuff.


-Holter

Greeting, earthlings!

Though there is more than precedent that when I say 'this'll be a short post' I am lying like Eric Cantor whenever his mouth moves, this really will be short.

Because I am fuckin exhausted. And so is N, and my mother, and my stepfather, and a good hunk of the oncology team.

Because...the leukemia came back. Which, you know, sucks.

Quick recap:

My last post was from the moment when I  was about to step off maintenance and prophylactic (tee hee) drugs and start life as a really worried dude not in treatment for leukemia.

Then my hamstrings started to hurt, or feel brittle, or something. N was smart enough to be concerned, leave it on the radar. And then I started to get tension-y headaches. And then those headaches got worse.

We ran it by Sandy and Feldman and paranoia was the better part of valor, so I got an MRI a week and a half ago or so.

The MRI came up clean, but to be super-safe they wanted to schedule me for a Tap so they could check to see if the disease had relapsed in the Central Nervous System (CNS involvement).

We left the city for the weekend with the Tap skedded for Monday.

Headache gets worse.
3am Friday night the headache wakes me up in a manner that is like what it must be to have someone look you calmly in the eye as they break your finger. With pliers.

I puke.  Puking from pain, plain and simple. Yay!

7:30 am. Headache puke 2.
10am.
10:30am.

Now we're getting ready to drive to the hospital. N has made all the calls and packed the car while I'm laid out. Sandy is setting us up with a room so we don't spend time in the overcrowded ER.

Driving back to the city there is a huge hill that raises and lowers the highway altitude about 900 feet to half a mile. The headache became a religious event--Moses shoving screwdrivers up my nose. Winding up like a softball pitcher.

We get to the hospital, I puke in the parking lot, we go in.

There follows a few days of something I am too tired to describe right now and am not ready to revisit. Suffice to say N was strong--staying colossally vigilant in unimaginable conditions--the Drs were worried but on the job, mom and Jim broke sked and hauled their dedicated asses back east from Montana, and I may have suffered through through some of the worst nights of my life.

I'm in for about a week. No solid food. Fluid drip. Hurling on a regular basis. I'm on Dilauded--a very strong opiate I hate but need--and anti nauseal shit to keep the horror at bay. The Zofran (anti nauseal) lowers the heart rate in large doses, and since I have a low rate because of running I'm thumping along in the 30s and 40s. I'm like Eyore, but with cancer.

They send us home.

I'm sleep deprived, terrified,  my mind is flitting like a barn swallow so I can't sleep. I'm running a low fever.

I flip out.

Between the sleep drugs, the decadron roid, the Ativan, the terror, all that shit, I am trapped in a concentration camp in my head, running a hamster wheel of awful.

I lock onto an image of antique chairs. A room full of dark wood chairs with baroque points and trimmed angles. Pointed, like falling against them would hurt.

One chair is my enemy. They are all advancing slowly, but there is a lead demon chair that knows my mind is shredded and that I am alone and small and frail and trapped.

To combat it, I pick the lead chair. I stare at it, I tense every muscle I have, freeze myself like a fight dog awaiting. I stare at the chair. Stare until it knows I see it, until we are the only two points of pain in the universe.

Once the chair and I connect, time passes.

Time passes.

Eric Johnson's 'My Desert Rose' is loop playing in a twelve second shred. Over and over. It is the sound of going insane.

Time passes.

I address the chair:

"Fuck you."

This stare-down with the chair lasts about forty minutes each time. Then I drag myself to the the bathroom and splash water on my fevered self. Then it starts again.

N is lying there next to me, experiencing this from the outside, but she thinks my 'fuck you' is me cursing the headache. That I am hacking it: having a rough night but soldiering through. I'm misleading with the outward actions of my bad trip.

But I'm going nuts.

Finally she wakes me from the trip, interrogates me to define where off the rails I've gone, and makes a command decision to call an ambulance, making sure that it will take us to our hospital before she calls for it. Not some other place.

Back to the hospital. Yay!

Another week goes by. Still very little solid food. Because there is a possibility that all of this comes from the Taps and the chemo, I get an Ommaya.



An Ommaya is like the Reebok pump but for chemo and your brain. I get a hole cut in my scalp, and surgeons crack through the skull to the fluid below--fracking my mind!--and install a little bubble thingy like my Port. Drs can poke a needle through the skin and into the bubble, draw off CNS fluid to check it for relapse, and squeeze in methotrexate and Cytarabine as needed to try to kill the CNS crap.

So no more Taps, and hopefully less trauma with putting chemo in my head.

Which brings me to the truth: my CNS bloomed with 1700 white cells of badness. Then after the next tap/Ommaya down to 1000. Then; 6.

A bone marrow biopsy has shown that there is a tiny amount of leukemia in the actual marrow, also. It had been 'sanctuary' but apparently popped out and roared back. Quasimodo on meth.

So now we're in Houston, where there's a rodeo.  We're checking out MD Anderson Cancer Center to see if their version of getting me leukemia-negative and then transplanted--because that's what we do now--is better or worse than the way our Drs in NY would do it.

Like I said. Long couple weeks.

I'll fill in more later, but wanted to get something down. Talk to you soon.

Ravens Win. Me, too.

On February 6th, two thousand now, N and I walked to the city-state and in we went. Normal. Monthly. My chemo menses, or whatever.

Well, no more.

I haven't posted or bored you with my daily hooey for a while. Rusty, out of practice, whatsoever it may be. I'll just cut to the chase. Which, for me, could take a while.

Oddly enough, with all the ups and downs and near death stuff and perfectly wonderful stretches, the Drs have managed to steer me across the calendar in just about the way they stated a long time ago.

Red line attached to a 1940's DC3 tracking across an old-style map. Except the map is a calendar, and my red line starts in April 2010 and arcs up over a bunch of horror and joy and fear and flat-out and 'holy shit did three months go by?' and 'is it still Tuesday the 8th?' and a whole bunch of other life, that tends to be life, and turns out, eventually, to be life.

And February 6, damn near when they originally said it would happen, I'm off the juice.

My maintenance chemo ended Wednesday. I got my last drip of Vincristine, which stays in the system for a few days. I am three of the five through my prednisone days, drinking water heavily and not-really-enjoying that everything tastes a little like is it 37% tupperware. After the 'roids and the Vinc toddle off like old men who just remembered they really wanted spaghetti, I'm done.

No more chemo.

I stay on the prophylaxis (tee hee) for about a month--let the immune system come back up with some protection, etc--and then we'll check with the heart Dr to see when I can get off the Gemfib, which has been keeping my cholesterol/triglycerides in line under the stress of chemo/roids and/or whatever evil the Asparagenase may or may not have wrought. Or, you know, all the steak.

Then, um, I'm kinda, well, normal. Ish.

Well, not really. When I go back in a month to get bloodwork and be done with the drugs, I'll get a nice yummy bone biopsy to stop me from thinking it's average-dude-days ahead. Then I will be on a three-month check-in schedule, with bone biopsies every other of those--so core samples every six months.

That lasts until I get to the five-year-from-remission mark. If I get there--if N walks me to the city-state sometime around spring of 2015 and whatever is still hanging off and within my frame is intact--then they call me 'cured.'

'Cured.'

That's fucking terrifying.

I've been terrified a lot lately. But not, you know, in a bad way.

You know those asinine sports stars--often in second-tier sports like hockey--who stop shaving in the playoffs, or spritz holy water on their gear, or whatever, to keep their luck running?

I'm doing that. But my spritz is terror, and silence on the topic of my chemo, or cancer, or leukemia, or stuff.

We're at the clinic, seeing faces I've been seeing for years now. Literally, years. Nurses and check-in people and Leon the insanely dapper blood-transporter from the Islands, doctors and bloodletters, and just, you know, humans.

And I'm silent. We get near a check-in desk, or a little bleeder table with an arm slab where I rest my flesh for the poke and check, or up to 10 Central to visit the our pharmacologist friend, or wherever.

And I'm silent. N keeps saying "Tell them." "Tell her." "Tell him."

And I'm glum and silent and terrified. You know that normal child who pulls back behind his parent's leg when people loom into his space. The child who doesn't do as he's told when it's "say hello to the Pastor," and "tell them how old you are," and "can you say where we went last night?" and "tell him your surprise about never being on chemo again, hopefully, ever. Ever."

I was never that kid. I was reciting George Carlin spot-on and singing Mazda commercial taglines and sifting seeds out of pot for the adults.

And now I'm silent and glum, and in my own head, and not sharing this absofuckinglutely fantastic news with the very people who have been endlessly a part of making it happen.

Short version: I'm being a dick.

But N is insistent, and knowledge pushes through, and by the time we're in front of the oncologist and the clinic staff, I'm kinda saying 'this is my last chemo' and stuff and realizing that, at the very least, I owe them this. And maybe I'm grinning a little. A little.

These people do this as a job. A job. This is their day. They lose people. When we met these Drs we knew two people in common with them: one was dead. Was already dead. Their faces fell when we said "oh, yeah, we knew X's family."

They lose people. I don't know the odds, but part of their job description reads "a bunch of the people you are supposed to save are gonna die. Try the dip."

So I need to wipe my snotty boy nose and maybe grow up a teensy bit, and start letting these people--and, ok, myself--know that I'm half a step over the threshold from 'in treatment' to 'recently pretty much out of treatment and now just paranoid as hell whenever I'm winded oh and also I get a corkscrew in my ass quarterly, but thing's are looking up.'

There. There it is.

Things are looking up.

How Old Are You Now?

Happy Birthday to you
Happy Birthday to you
Happy Birthday dear...um...not-cancer-ness (I guess)
Happy Birthday to you
...and many more!

Sometime in the past months I turned 40. N threw a hell of a party. There's a face-in-cake tradition amongst a few of my friends. Kind of a long story.

Some time in the past months I passed a benchmark of age that I thought for many years would never happen. Then for a few years would be a total bummer. Then for the past couple years, would be such, such a gift.

Sometime over the past few days I passed the benchmark of two years in remission.

I thought it was May 26th, but N had it down as May 28th. And, c'mon, I have learned a couple things since all this started:
1-Pulling marrow out of your pelvis cannot be mistaken for heavy petting.
2-N is usually right.

So let's call it May 28th. That means that yesterday I marked two years without any recurrence of Leukemia in my system.

Um...yay!

The specifics of the dating are a little wonky. The remission date is staked in the ground as the day you get the 'all-clear' results from a bone marrow biopsy taken at the end of your Induction Cycle. Induction being the name for the really-super-groovy 31 days I spent in the hospital at the beginning of this party where they try to "Induce" remission by giving you everything they found under the sink with a skull and crossbones on it. Following that logic, prison rape would be considered inducing quality time, I guess.

So they look at what ails you when they wheel you in, they fill you full'a poison Mojitos and whatnot, and they look to their textbooks and studies and decide that X number of days after they start they'll plunge some marrow and see if it worked. And, very good for me, it did.

But I could have been leukemia-free longer by a few days, or not. That part of it isn't an exact science. So the dead-on right date for the two year remission is not intensely critical.

But this is the next in a line of dates or numbers or diagnoses or races or trips or moments that we have wrapped our lives around. You get a Leukemia diagnosis, and everything changes. Everything. Shit you thought mattered SO SO much five hours earlier would be laughable in its folly if you weren't so goddamn scared.

And you live by schedules and knowledge outside yourselves. 31 days on 10 Central to get clean. 9 months in and out of the hospital tap-dancing with poison to stay clean. 2 and a half years of maintenance to keep the beast away for good. Or not.

To use Pat Benatar's version (unless my colleague Dave wrote this one for her, too, in which case I am mis-quoting): Before I put another notch in my lipstick case, you better make sure you put me in my place. Hit me with your best shot. Fire away.'

Huh. That was apropos as hell, and it just came to me. Ah, pop, you serve us well.

Anyway, the doctors set out points on a timeline and you lean towards them or rear away, and they become your life. And I don't mean that in a bad way necessarily--within the context of Leukemia being pretty much across the board, you know, bad. You just have this goal, this grail of 'cured' that has been hurled waaaay off into the distance like the best-cast fishing lure in the universe. And it plops down in the murky distant waters with a gurgled ploip! and it sends off perfect ripples that die away before you can really sight where they were. And then you wait. And hope.

To my Drs, when thinking of my particular A.L.L. and my age and all the variables, it seemed from very early on that "2 years remission" was something to shoot for. The NP said to N very early in the game "At the 2 year point, you can breathe your first sigh of relief."

N grabbed onto that shit with both hands, man. She didn't let go. And here we are.

I have ebbed and flowed. The ups and downs are still etching on my actual carcass, and so sometimes I have immediate truths that push something as ethereal as a date on a calendar away. Sometimes it is leg fatigue or slamming heartbeats in the night. Or sitting across from a rookie in the waiting room on bloodwork day and thinking "God! Shut the fuck up! That hubris is gonna get twisted right the fuck out of you in the form of a serrated needle, tough guy, and you're gonna wish you didn't talk about your gluten into that cell phone quite that loud next to that terrified woman waiting for her gray husband to come out from the barca-loungers. You'll see."

Sometimes the two year mark was a beacon and aiming point. Sometimes I just wanted to get a thousand yards swum before the weekend, or needed a horrible audiobook to be done with. Or held the fistful of pills for Tuesday in my hand and just hung my head, you know?

And here we are.

The more things change, the more they stay the same. And, you know, change. Or whatever.

I am prepping for Eagleman again. I look forward to it with the same terror and grief and excitement as I did last year. I think I am in better general shape--further off the brutality of the Consolidation chemo--but I also think I may have been training a little less. So who knows? I ran a 5K in New Jersey on Memorial Day, and it was hot and humid. This weird family race, where a little girl looked up at her mom as she crossed the finish line and the sight of motherly comfort allowed her fatigue and fear and core temp to win and she barfed all over her cute yellow commemorative t-shirt. I ran 3.1 miles in over 26 minutes. A pathetic time. Unless you take the chemo and heat into account. And then; maybe, not so bad.

But still. Pathetic. I mean, c'mon, really? 26 minutes? What did I, stop for meatballs? An Orange Julius?

My chemo schedule has for the most part stabilized, and for the most part in a good way, with some smaller mysteries and annoyances to keep things interesting.

To recap: the Maintenance phase is where a low level of different chemotherapies are constantly in your system to serve as a sort of early-warning net and active deterrent to the possibility of the Leukemia returning. I describe it to people as the part of the TV show where the bouncer looks at the drunk schlub he's thrown out of the bar already and says:

"And STAY out!"

The poison is doing some anti-leukemic stuff, but it is also just sort of keeping you on alert, keeping you a little under attack all the time, so that if anything starts to come back all hell will break loose and they'll know as soon as possible.

I know: it's not my favorite logic. But I'm not dead; so there's that.

Maintenance bloodwork should be approximately:
White Blood Count between 2.5 and 5
Platelets around 150
Hemoglobin around 12 or 13

These are generalizations, but they represent an immuno-suppressed state that is high enough that you can live life and ride subways and eat gyro platters from corner carts, but you should probably not leave the Rocky Mountain Spotted Tick neck-deep in your crotch-flesh indefinitely.

And if you're gonna go run or swim or bike, you might not wanna get all hyped up by the possibility of winning your age group or anything.

If you recall, it took a little while for the Drs to find the Maintenance balance for me. The third mouth from Alien growing in the back of my throat and some push-button morphine indicated maybe we started the dosages the weeest bit too high. Then things settled in.

I have grown a bit more accustomed to the Maintenance poison and so they have raised the doses slowly to try and keep me in the range.

But I'm a little weird.

OK, yes, you knew that. I mean specifically to this.

And maybe not. Maybe each and every person reacts to chemo in their own specific way, and it is just a matter of seeking balance.

I have a friend who is an ER attending in Baltimore. He's very smart, and he's the kind of a-hole who knows it and shares that fact with anyone in hearing. But when I got sick he did as my stepfather's dear doctor friend did for him: studied up a bit outside his specialty so he could keep tabs on his threatened pal. Oh, and since he's an ER doc, he has the bedside manner of a gang-rape: "Shit, Holt, thank god it wasn't that other strain. Your ass woulda been dead. Fuckin hell. See you at the funeral."

Anyway, he has given me an interesting lesson over the past few months. I have my next Intensification coming up in August: the two-month party where the Drs decide regular daily poison just isn't enough fun and they think maybe throwing a hatchet at your face would work better. And this Intensification is recommended because the smart people at MD Andersen have been following their studies of people in my situation and--

It is here where my ER doc pal sort of snorts. He's very good at the 'derisive laugh.'

He says "The study?"

"Yeah. The studies are showing that people--"

"You know that 'the study' is, like, you and four other guys, right?"

"..."

He has a point. Yes, there are similarities and particular arcs of knowledge and general expertise and blah etc blah. But there aren't that many lucky boneheads with my exact cootie at my exact age with my exact chromosomal whatsit. And on and on.

I'm not trying to get the 'I'm special' award here. It isn't about that. It is just that there are SO many variables for every one of us that you pretty quickly fall off the map of "this works well" and land on the uncharted territory of "well, it didn't kill that guy."

So, back to my particulars. Apparently my hemoglobin is sensitive. Sensitive like the kid who calls his parents by their first names, pees at the urinal with his pants all the way down, wears corduroys well past when the rest of us changed to jeans, and cries himself to sleep under a bookshelf of astronomy books because maybe out there are worlds and beings who don't hurt his feelings.

That's right: my hemoglobin is a sci-fi nerd in hand-me-downs.

And, as a long-time sci-fi nerd myself: damn proud of it!

Anyway, my white count and platelets have been doing what they're told. They've upped my 6mp doses to two-a-day all week with three-a-day twice a week, which at the outset of maintenance would have just been a bus ticket to Deadville. My methotrexate dose has stayed at a halfsie (8 pills every Tuesday instead of 15). And the Vincristine/5-days-pred party has bungled along happily for months and months.

Every three months some unlucky SOB has to lean over my relatively dense skeleton and drill a core sample out of my pelvis. Recently the NP has started making little jokes about 'boy butts.' While there's a chance that's wildly inappropriate, I couldn't care less. She's a gem, she could shit in my soup and still be on our christmas list. And besides, it's nice to have people who have been so focused on seeing you as the disease start to see the you under the disease, to be relaxed enough with your positive progress that they can joke a bit. And, let's be honest: I'm Norwegian Scottish. As Carlin has observed, I need a fat wallet a three handkerchiefs just to hold my pants up. There's no Gaelic word for 'boomin can.'

Medical progress, however, has caused me a shitload more pain, which is always nice. Since I started needing tri-monthly biopsies, a test known as an MRD has come into fashion for shcmucks in my boat. They have used them for true pediatric Leukemia for a long time but now think immature fools like myself could also benefit from the high-level-granularity that an MRD can view your juices with.

The MRD requires some extra goop. So now I get three Pulls instead of two. Three lovely, cadenced, slow-ripping Pulls of marrow, trawled out of my deepest center on a crochet hook. Good stuff.

And I feel bad for whoever's core-sampling me. They're good people. And they like me--or are faking it very well, which is all I need. And I'm a somewhat "bring it on" kind of patient. Go ahead, swing the hammer, as long as it makes me better.

But the Pull hurts. Period, end of report, as N's grandfather used to say. No way around it. And I can't help but make a noise. An evolving noise. So far, each Pull has changed the tone or delivery of the agony sound. As your marrow stays healthy longer the pain increases--lovely getting-better paradox--and I have evolved from a sighing yelp, through table-clutching grunts and arghs, to last week, when what I can only describe as a hiss-curse escaped through my clenched teeth. The NP murmuring 'sorry sorry sorry' while still treacling out the stubborn me.

I feel bad. I really do. There should be no crossed purpose. Yes, there should be empathy. I believe all medical students should get a bone marrow biopsy--god, would that be hilarious! But there should not be a sense of harm. Hippocrates had it figured out. And so I don't want anyone to think that I am anything other than grateful and enduring while they scrape the bolognese out of my tubes. I try to keep quiet. But, you know: it hurts.

Anyway, my hemoglobin stays low. I have some kind of sinus infection right now. Have had it for more than a month. A Dr gave me a Z-pack of antibiotics, but the infection just sort of laughed like the guy on the Captain Morgan's poster and swatted the Z-pack aside. Because of the infection-fighting my, white count has soared to 7.9, which is what normal people have (white counts climb when you are fighting something because the body makes more when needed, like America does with poor people and war).

My platelets were 180 today, which is a little high as well.

I have had to up doses because you're not supposed to be too 'healthy.' The Def-Con 4 aspect of Maintenance demands that you stay a little beat up. I won't be able to even think about running or racing at anything like my old levels for another year, minimum; that's just the facts; I'm weakened on purpose, every day.

But sweet little hemoglobin has been the perfect ward, staying low and lower pretty much the whole time. Let White and Platelets rise and fall, crest and jump, quiet tender Hemo says: I'll be here, crouched behind the wood pile, sucking my thumb, if you need me.

I'm not complaining. I'm not. Seriously. For one gorgeously succinct reason.

I'm not dead.

There are complex human moments and every aspect of this years-long-battle will blur and reform a million times in visions and revisions which a minute will reverse. But underneath it all is the simple pavement of not-dead-ness.

So I'll wheeze while I run and slather on sunscreen and flip through medical bills like a blackjack dealer breaking in a new deck.

I'll choke down the bitter pred pills, and I'll eat the Half-Ironman and smile, and I'll work hard to show N that I am paying attention and not adding undue risk to this precarious life, and I'll act on a stage in a reading where flexing dormant theatre muscles was simply orgasmic, and I'll meet with the nutritionist who never quite understands why we keep laughing when she says 'of course, cutting out red meat would really set you off on a good path' and I'll eat a vegetarian dinner twice a week before I dive face-first into a Steak Picado from Maryanne's on the corner that weighs more than my friend's toddler Ben.

I'll rattle on and on here so anyone still interested or caring enough to check in can at least see that no news is, indeed, good news and that I am still kicking and living and talking and talking and talking.

I won't be gone as long this time. I swear. I get the latest biopsy results this coming week; looking for yet another all-clear. I have to squeeze blood from the life-stone until early August when we go back in for Intensification 2: Electric Boogaloo.

I weighed 157 this morning. Swam 1250 yards. Took 12 pills with my oatmeal, one more later with a cupcake. I got a haircut last week. Probably need at least one more before it comes out without hardware assistance at the end of the summer. We'll see.

We'll see.

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.