Care and Feeding, or, On The Upkeep of a Jalopy

         

The above pic represents a pretty solid thematic representation of a lot of the last couple of weeks. For those of you who are a little slow, that started full, but isn't now. Gift veggie lasagna from pals awaited us on the first day back. One lunch each, one dinner each, and here's your result.

We go back into the hospital tomorrow. We get packed up and ready tonight, and then hang around until they call because a bed has come free. No matter how many times I have made a bed free myself by happily if weakly leaving the cancer floor, I always get a little twinge that, when I am at my most impatient and pissing and moaning about there being no free beds, maybe I get a free bed because some poor bastard kicked off. And that would suck.

So it is back into the clink (is that spelled differently when using anachronistic pseudo-slang, as opposed to describing the sound an earring backing makes bouncing off a bathroom sink right before a human voice goes 'Dammit!'?). Where N gets one kind of break in that the damn place is crawling with professional take-care-of-cancer-patients-people who check me and recheck me and take stuff out of me and put stuff into me and in general seem to spend a lot of time trying to maintain my health, if not my feel-good-itude. Almost all of that gets split between me and N when we're on our own…and the split leans on her about 80-20. I mean, I've actually got the damn disease and I actually get the chemo, so I know I get some slack. But still, I'm not easy to live with when totally healthy (the incessant talking alone is on the short-list for new prohibitions from the Geneva Convention people) so tagging on all this Care and Feeding (see what I did there?) just must add something.

It goes like this--an incomplete list at best:

1-Flushing. I now have the PICC line attached to my inner right bicep, unnervingly disappearing into a hole in my flesh without so much as a single spurt of gore. We (meaning she because I just stare at the damn thing) do not have the expertise to change the dressing, so a home-nurse paid for by the union health insurance--previously mentioned--comes by once a week, or I can get lucky and time a clinic visit and have it done there. But flushing has to happen every day, and again, unless I'm lucky enough to be at clinic, that falls to N to do. It isn't a huge task--no stitches, no Metzenbaum Scissors (my favorite random Dr tool requested by Hawkeye and Co on MASH, or at least tied with "Rib-spreader", which really should have been a Judas Priest song)--but it must be done right, and N takes any task seriously and tries to do it well. She has to sterilize each cap and inject two different syringes of fluid into it in order. Which, as a standalone thing on a Fisher Price workbench or in 10th Grade Biology, may not seem like much. But keep in mind that the other end of the plastic thingy you are scrubbing with an alcohol swab or threading a syringe of blood thinner onto disappears the hell under somebody you care about's skin.

Take it out of context. Let's say your chore is to take the silverware out of the washer and put it back in the drawer. Fine.

Now remove the image of the silverware basket in the machine and replace it with an oddly non-bloody door-flap in your mom's back, that exposes a CD-sized area on either side of her living, twitching, easily damaged spine, which has all your family's forks nestled tightly around it.

Go ahead, whip through that job because you don't wanna miss fucking Donahue.

2-Drink (water). I have Leukemia (I may have mentioned that). For a while, in remission, I could say (was supposed to say and clung to saying) that I was fighting Leukemia, or cancer, or whatever the hell it's called (what is it? Wednesday? I think it's "A Bone and Blood Cancer" today.) That was because I was in remission. I'm officially not again now. Not yet, anyway.

The latest biopsy results were basically good, but a little screwy. There are three levels of depth to the biopsy: easy, middle, and deep. The first, least observant level came back clear. The third, deepest, most advanced method of detection also said I was clear. But the second, pretty kinda-deep level in the middle said I still had leukemic cells.

Which isn't so horrid if it turns out to be true. I have been CNS-clear ever since they first dribbled paint thinner into my brain and spinal column, so that's all good.

And the assumed course of remission for transplant was always two of these lovely Hyper CVAD stays--the second of which starts in mere hours. So I don't think it was a given that the first bout would totally clear me.

But it's a bit odd to get the results I got, and my Dr said so.

It's like ex-president Bush, my high school Spanish teacher Mr. Binford, and the Tech critic for the Times are all staring at an iphone.
1-Bush tries to bite it, shakes it a little, grunts some, then drops it and leaves to follow the scent of cheezits he's picked up.
2-The Tech Critic for the Times checks it out thoroughly, up and down, runs a few apps, takes over someone's home wifi and buys some Keds for his daughter, and pronounces it a Good Thing, then he leaves.
3-Mr. Binford, an intelligent guy with a lovely wife and a great deal of capacity for thought, stays there, padding sliders and buttons, opening and closing apps and widgets, clicking the headphone fast-forward stick-button thingy. And he won't leave, and he keeps saying "Nope, something's not right. Can't put my finger on it, but, nah, I'm not sold."

So my Dr is trying to talk to the Dr in Houston who is coordinating this treatment so I'll be on the correct timing and track when transplant hopefully comes. And he's talking to the high-end-deep scan tech to make sure his All Clear is on the up and up. And he's talking to the mid-level-deep-ish scan tech, to make sure there wasn't some, I don't know, cream cheese or 925 silver in the sample.

Meanwhile, I have Leukemia (I may have mentioned that). And my body is very, very, disappointed in me. Because, just for the simple act of trying to kill me from within by turning some of my own cells against me, I insist on continuously dumping poison and Drano and mind-eraseing bags of this, and pancreas-exploding bags of that, into it. So my body has decided 'Screw you, Chumpstein, I'm only putting in half the effort from here on out.' So I am still down ten pounds, hovering around 148 no matter how much movie popcorn and roast-beef-and-cheese sandwiches with soup chasers and bowls of mini-wheats festooned with bananas (please celebrate briefly with me that I got to a place where in context 'festooned' was actually the best word and I got to use it) and soda and apples and raisins and peanuts and hummus and cheese and salami and milkshakes from everywhere that sells them I throw at it. And my hemoglobin has stayed low--which it always does but I think it has stayed lower, longer--and so I spend a good portion of each day kinda panting at the end of something deeply strenuous like answering the phone.

And one of the best things to help all of this, from leukemia on down to fatigue, is water. I should be drinking water all the time. And often I do. But N still needs to make sure. Watch over me like I'm some errant toddler ('errant' is also a fantastic word; tastes like a couple of bitter but perfect berries) who doesn't remember his simple tasks. She will simply lift the empty water bottle out from in front of me, refill it, and put it back, and I'll gaze out over it and watch DVR'd motocross for another twenty minutes. Then she asks "Are you drinking?" from the next room, and I'll say 'yeah' as I reach for the bottle and take my first swig in far too long. I get really upset when I'm bummed or feeling weak or just letting the situation get to me, and when she asks "Are you drinking" I bawl out some a-hole response about of course I'm drinking, leave me be, I'm an adult, etc blah etc. I only get to do that when I have been drinking. And I don't get to vent my indignation like some muscle-less big baby too often, because I'm not keeping up with the H2O like I used to. So that stays on N's checklist.

3: Reading all the, what are they called? facts and stuff.  There is a lot of literature out there about leukemia in general and leukemia in specific and how there aren't many schmucks my age who get the leukemia I got (1200 a year or so, not sure if that's US or everywhere) or what the odds are of a 10 for 10 match or what the chances are of a hybrid-cord-half match instead or how many fun, normal, regular, totally non-threatening things I'll be prohibited from doing for long stretches of time (gardening: one year) if the transplant works or what the new gene therapy they may give me can also do or what the longer-term consequences of the Ara-C blackout party I had with myself (I'm still not sure if nobody else was invited, or if nobody else came) and on and on.

I have little bits of this info that, as an actor, I have picked up aurally from N or Drs or others and tucked away. I used most of them up in the previous paragraph, I think. Oh: the things on the ends of your shoelaces are called Aglets: there; I'm shot.

N reads all of it, pursues all of it. Hears me mention a tightness across my cheeks and goes online: Cytoxan-face, which my stepfather confirms. Hears a nurse mention a syndrome that might limit Magnesium intake, and goes online to look into it and learns instead that soaking my feet in Epsom Salts (or maybe a whole bath, I forget…see!?) will up my Mag levels. Hears the NP say exercise raises the hemoglobin and actually encourages me to go running--not yet this time, because I can't speed up to make a crosswalk light without feeling like I'm wearing a new backpack full of old bricks, but before that.

All's I'm saying is: I'm high maintenance, and have been on and off for almost exactly three years.

Speaking of which: Monday was tax day and also what I originally referenced as my Diagnosis Day, three years ago. Wheeee!

I'm still here, dagnabbit.

N and I had a nice meal out and saw a movie and it has been warm in the city the past few days.

I'm drinking, I have not packed yet for the hospital tomorrow but I will soon. I will probably eat a post-movie-popcorn snack in a bit. I am trying somewhat hard to not think about the five-day chemo run that starts soon, and trying really hard to not just chew my nails and worry about them finding a match.

Mainly because once my platelets drop I can't chew my nails, they have very little caloric value to help with my weight-gain, and they are probably about half chemo anyway.

And, maybe most important: you can't get bugged or bogged by that which you cannot change.

We go into the hospital tomorrow. Left foot, right foot: repeat.

Things to do Sunday

I have very little to report. Which is almost exactly what I'm supposed to have to report. This is weight-gain/sit still time for me. The scale tips the teensiest bit in my favor, and I'm trying to move very little. I have about as much red blood as a mid-size mutt right now, but, weight loss and all, I'm still a good bit bigger. God, I'd kill to be a mid-size mutt right now. 

If you are planning on being in or near manhattan tomorrow, Sunday, April 7, there is a marrow drive being put together by some tireless friends on my running team. I won't be there for two reasons: 1-I'm still not allowed around crowds and the excitement would probably make me keep passing out over and over (which could be kinda funny) and 2-of everyone on earth, the only person whose bone marrow I know to be utterly worthless to me is me. 

But you should go, and not just for me. As I've said, getting registered is a responsibility and a noble deed we should all embrace. Details are:

Sunday 4/7/13. 10-2

JackRabbit Sports

72nd between Columbus and Broadway 

And remember, you sissies, it's just a check swab. Sheesh. 

Holter 

He Has Risen

Sorry, couldn't resist a little Easter humour there.

The above photo was taken in Chelsea, some days after my release. The photo is from approximately the 60% point of my 'exercise,' which really just means a walk around the block. I still weigh 138, and my hair has started falling out in earnest, so I imagine Chelsea's denizens were a wee bit concerned about a pending zombie apocalypse as I trudged by, breathing heavily because, in an odd reverse math, when you get stupid-light, hauling your frame around gets really, really difficult.

Short version is that last Friday I was released from the hospital to go home and do a whole lot of goddamn nothing. I am on the 'be a baby' system: eat, sleep, crap every once in a while. Occasionally cry. Have bad hair. So far I'm adhering pretty well.

Monday, after an uneventful weekend of trying to eat as much as possible through the condom-on-my-tongue taste inhibitions of having a really bad case of thrush (again), we went back into clinic. Because, when you are 20 pounds underweight, were just in the hospital for pneumonia, chemo overdoses, personality blackouts, and influenza quarantine, what better way to start your week than with a Bone Marrow Biopsy, right? The NP drilling a hole in my back said she didn't have much difficulty finding the spot. I think at one point she may have leaned into the drilling needle a little extra and touched the hospital bed beneath me.

The preliminary results from that BMB are good, but there are two deeper layers that are the ones that really matter. They'll take more time to get back to us. We're hopeful, but mainly I'm trying to not interact with too many germ-riddled humans, and eat my brains out. We've installed a Purel waterfall at the front door so that anyone entering gets a solid cascade of the stuff before they're anywhere near me.

Oh, and I have a hole in my arm (again). The PICC line they installed in the hospital makes getting fun stuff like chemo and blood easier, and makes getting blood drawn less painful because they just vacuum-tub it out of the line as opposed to sticking you with a needle. But since it is, in essence, a plastic tube like headphone wire just kinda diving under the flesh of my arm up near the armpit, the damn thing takes some extra care. N has been trained to flush the two heads (for dripping more than one horrid fluid into the patient at a time) each evening: swab with cleansing scrub, plunger home a syringe of saline, then a syringe of Heparin--a blood thinner to ensure there is no clotting near the site--and then repeat on the other head. And yesterday a home-visit-nurse provided by my union health plan came by to remove the dressing covering the whole shebang and put on a new one. It was a little invasive having a stranger kneeling by your couch swabbing little scabby bits of your arm, but the risk of infection is high enough in general that I'll suffer whatever I have to.

This week should be uneventful. Now that I have written that a rogue pterodactyl from some genetics lab will dive-bomb through our bedroom window and spear me clean through the skull with his ossified beak. But I am supposed to just recover. Get my counts back up. Don't have any damned fevers. Eat. Eat. 140 pounds, here I come. I'm gonna stumble my corpse-frame around the corner and get some pizza. It'll be a little like Thriller.

-Holter

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.