Wednesday, May 15, 2013
This photo was a couple weeks ago, in Baltimore. I have known the guy with the swordfish growing out of his head (could be a Marlin, I dunno) for 40 years or so. N took the photo, and Mom and Jim are off camera left. The pile of ex-crab in front of me is mine. I didn't make a huge dent in the population, and a couple weren't quite up to snuff so I left the bodies for compost, but I think I did four, maybe five, plus some extra claws. Even describing the transplant process to sworfish-head, I wasn't really weighed down by leukemia or the wait for transplant to happen.
Earlier that day I drove to Pepe's, which has not had a guy working there you might call Pepe for at least three decades (passing through Greek and a little Asian ownership/staff, and now resting, pretty firmly I think, in South Asia). Pepe's makes the best or second-best (depending on my mood) cheesesteak on earth. Philly people can kiss my ass. Go to Pepe's: you'll shut yourself up. While eating my chessesteakeverythingnohots (very difficult to separate, as I've been ordering it that way forever) earlier in the day, feeling pretty beaten and fatigued and worried my numbers weren't coming back fast enopugh, I still wasn't too weighted by the worry and the scheduling boogiemen of transplant.
N attended the retirement party of one of her professors from her PhD, program, a mentor with an enormous heart and astonishing capacity for ignorance of his own hairstyle. While I knew she was down there in College Park feting one of the people who found a lightning bolt in her thirst for information and wrapped it around his experience so she found a home, I wasn't really too down because of transplant
Good stuff. But impermanent, like that early moment when a fart smells kinda OK. Fleeting.
Most of the time these past months, and especially these past weeks, I have been bending under the weight of the two-pronged attack of transplant worry and general feel-like-shit-itude.
The feeling bad comes from the "Augmented" portion of these two chemo hits they gave me to get me back into remission. N and I have come to the conclusion that we're not huge fans of Augmentation. For the first round it brought on the brain-snap because of the major increase in Ara-C. This time is created the lovely pattern of returning to clinic for two more Mondays in a row of chemo to the Ommaya, a nice little pop of Vincristine, and the lovely newcomer Rituximab. N has looked it up and Rituxan (it's cute diminutive nickname) apparently has a side-effect list longer than the NRA's 'accepted lies for the public' talking points.
So I got my chemo hit, HYPER C-VAD cycle A, and then I get to have these three party chemos bashing me back down just as my numbers are thinking of coming up. Goddamn groundhog day in my blood, with a skosh of Whack-a-mole thrown in. This past weekend I was running a 102 fever on and off for 48 hours.
When we got the match we were elated and we started talking about process and genetic extra therapy and travel plans and housing issues in Houston, and then everything kinda froze. We have schedules we've been given that the Drs down there would like, but everything waits on the donor. It isn't the donor's fault, there are just strict protocols about when they are finally allowed to reach out to the donor to schedule, and then the National Marrow Registry has to do the outreach to protect privacy and the chain of command or whatever, then the donor has to agree to either the dates offered/asked by the cancer center, or figure out other dates that work, etc etc etc.
And it's like watching paint dry, except this paint is 'Maybe-Dry' brand and so you can't be sure if it ever will. The watched pot, blah blah blah. Except with getting a match I am hard pressed to do anything but watch the pot. And I feel beat down and tired and like crap. And I am having some dealings with my union that are re-building my belief that most people on earth are fucking stupid.
Except the religious fruitcake who said that was saying 'Lay it on me. I can take it, you annoying bastards. Lay it on me.'
And that was brave.
And, also, it killed him. So that allegory can maybe kiss my ass.
I'm self-pitying, I'm not eating enough because of either fever blisters or drugs to help combat the fevers that gave me the blisters making me hate even thinking about food, so I'm dropping weight when I should be gaining. Some of my union colleagues are having a rousing competition of Who Can Stuff Their Head Further Up Their Own Ass? I did an audiobook that a kind producer-friend worked out for me, but just in time to have a mouth full of sores, so I Orajel-ed my way through a day and had to add time to finish, which was demoralizing.
Basically, everything's a bummer and I am letting it get to me and the fact that I am letting it get to me pisses me off: letting myself and others down, etc blah blah.
So it was very nice today to get a phone call from Houston with a date. Good goddamn!
They have made donor contact and they will transplant me mid-June in Houston. This means that they want us down there at the end of May because there are around two weeks of pre-stuff, from administrative signing of consent ("I hereby swear that if I grow worms out my fingertips and my eyes turn into blood I won't hold anyone reponsible...") I will start pretty quickly with a week or more of radiation. The last couple days will be radiation and then a drip of Ectopicide, which is a badass enough chemo that a single drip delivery finishes the job the radiation has been helping with of killing off ALL my marrow. They want my bones so hollow I could yank one out and do a fife solo. I'll briefly be avian, so don't lemme near any ledges or branches, 'cause you know I'll give it a shot and just fall the hell down.
So we're happy and terrified and prepping and not ready and happy and terrified and planning and happy and I'm pretty sure I can't separate my anticipation from any of the other emotional states just yet. But I don't think I am bowing under the weight of the wait any more. And the fever and attendant mouth sores are gone and I'm eating right and pretty well and hope to get above 150 again--hit 147 at the bottom of the arc this time.
But it is something to do. I have always been better with adversity and pain and slogging through tough times than I have been with sitting on my hands on the buses of life, and Bowie said. Uncertainty and 'hold tight till something outside your control happens' don't sit well with me. That stuff termites into the crossbeams of my brain and psyche. I worry something might eventually give way.
But it hasn't so far, and when it starts to really chafe my inner peace (currently often reached through "Judas Rising" off Priest's Angel of Retribution) something tends to come along and improve the scene. It's a non-subtle life lesson to Just Hold The Hell On. Don't let it win. Don't get so low you can't keep treading water for yourself. Don't.
There's another stage, another side to come out, another battle.
Gotta go to bed; get ready for getting ready for the next battle. I lingered too long in the chambers of the sea. Now I gotta figure out which heavy metal t-shirts I'm gonna pack. Ain't life grand?
Tuesday, April 23, 2013
Yes, that's what it looks like.
In fact, I got a few.
I was released today back to the wild, and am really tired from getting home and the emotion of the good news, but it matters that I have been matched.
I got a call from the Donor specialist from MD Anderson. N was working on her computer, my mom was working on my computer, Jim was napping, and I was being bald and watching Formula One on DVR.
A week or so ago she had said that they had three 'possibles' from the preliminaries they had from the search they initiated, and that one looked 'good.' I had no idea what that meant and frankly was terrified to ask anything because I worried I'd just keep asking questions until she hung up and then I'd die.
Seriously. That's part of my problem. I get worried that if I piss these people off or get too pushy or whatever, they may just say 'screw it, this one's a pain in the ass, I'm burning his file and going to my quilting class' and then nobody will be trying to find me a match and get me well.
I don't pretend for a second that there's anything viable or intelligent about that, but there you go.
This evening she says that all three of the three preliminaries they pulled to look at on my behalf have come back as ten for ten matches.
And she says it like I say "I'm gonna take a leak" or "The movie's at 7:15, right?" Like, off the cuff. Hey, cup a' chowder, tuna melt, and this pathetic fuck's life. To go.
I'm the wee-est bit in shock.
And distrust. Which, again, is stupid. She said that they 'liked' two of the three better, because, while they only give a crap about ten for ten, the typing also has some other indicators and by her view two of the three were better.
I think I said something like 'uh' and then maybe pushed my finger against the bridge of my nose. Really hard.
This other-shoe-dropping issue is something I have to get over. I understand that I'm a white guy and so the chances for a match are, while less than great, better than they are for most other people simply because of the numbers of white guys who swab.
But still, it just seemed to loom so large, and to sort of blithely be popped onto the other side of it like Dino got popped outside the door of the Flintstones' place; just feels weird.
I know there's so much left, so much more to be done, so much prep and worry and planning and likely pain and fear and oof and shit and ugh and ha ha how the hell'd that happen?! and so much more.
But right now I'm gonna stare at my match, and eat some ice cream, and then go to bed, and if the bed won't stop swirling with possibilities and possibilities that a minute will reverse, well, screw it, I can live with that.
Friday, April 19, 2013
Photo TBD We got here at 11:30am or so in the room (River room, but wall bed. Sigh.) and settled in. Got checked and prepped but the chemo has to be hand-made per person and they won't start until you are in the building. 4pm--Hooked to a saline drip, scheming cross-country union strategy because most of the National Board is in LA. 6pm--Pre-meds for impending Cytoxan (a chemo that I noted in an email has 'tox' in the middle and most of the letters from 'cyanide' on either side. Good stuff). Decadron every day for four days--roidrageroidrageroidragedoyousmellpopcornhey lookwhatmythumbsdo!-- One non-nausea Zofran that's supposed to last 24 hours...uh huh. This stuff called Mesna that has to go in an hour early on a slow drip to protect your bladder, because--as I had so crudely forgotten, and why should I because it's a fantastic tidbit--unprotected exposure to too much Cytoxan and Your Bladder Turns Into Blood! Did y'hear that, kiddies, YOUR BLADDER TURNS TO BLOOD! That's the name of a fantastic sequel to to a movie nobody has the balls to make. 7pm--Welcome Cytoxan! Enter my veins and let's get this the fuck over with. The plan is: A three-hour drip of Cytoxan once every twelve hours. Six bags gotta go in, so that's three days planned out. But! To be efficient, and not keep me here even longer, during the nine-hour pauses between the Cytoxan main dish, they are getting some of my other juices handled: Tonight right after the main bag empties I will get loaded up with a happy augmented dose of Vincristine. Whee! But the Decadron pushes me past most of the initial shittiness, and the Remeron will cover any spare nausea and bring the nighty-night, so it actually makes a lot of sense: rage past or sleep through as much of the awful as you can. It's as if they've done this before. Then tomorrow in the next pause around mid-morning they will hit me with Rituximab, the 'new kid' to my treatment, added in on recommendation from the Houston Drs to overcome a certain sub-trait of my Leukemia. It supposedly doesn't have the bad side effects of the older-school juice I'm used to, but I have only had it once so we'll see if the worm turns. 9:10pm-- I almost wet myself every time now in the can because when you're on a saline drip there's an imbalance in how much fluid you think you are about to evacuate, and how much is actually in there awaiting release. So, between the safety hospital door that cloooooooses reeeeeeaaaaalllly slow, and getting your fly down while holding your pole (IV pole, you sick infant), every pee is an almost-dampener. Which is humiliating, even alone in the bathroom. And you forget before your next pee. Every. Damn. Time. 9:42pm--I want fried chicken with mashed potatoes and brown gravy. 10:36pm--Frantically twitching my fingers to a pattern I memorized at a neurologist's office in the early 80's. Trying to--hold on, I totally forgot I was supposed to go to the candy machine and get gorp...ok, got it, and the Cytoxan ran through so the nurse unhooked me long enough to take off my shirt on N's reminding ("Look at how that skinny guy still has a little gut, mommy!" "Shut up, Herman.") because once you are hooked to the pole and the PICC, you're wearing whatever you were wearing Period. Imagine threading one leg of your shorts through an anchor chain. Then anchoring. You follow? 10:49pm--waiting on the vincristine to arrive. Gonna eat that gorp! I'm still wearing jeans. I'm proud of that. Which is, without really any debate required, totally stupid. But I avoid the 'patient' garb as much as I can. I think I have taken a weakness in my vanity and turned it into a positive because connection to 'street clothes' actually helped me find strength: the dumb connection to being 'normal' and being able to go outside if I want and all the regular-ness that comes from jeans and a t-shirt that would be instantly neutered by a 'this, fair strangers, is my ass' gown is a good mental and emotional platform for me. A very, very tiny Archimedes moment. I'll take it. 10:55pm--Like most idiots on drugs, I am certain that this is the best gorp I have ever eaten, ever. If I can't sleep and I run out of dollars (taking a strip-club dilemma and putting it in a cancer ward) I may just go stare at the machine that gave me this gorp. 10:57pm--GORP: Good Old Raisins and Peanuts. Trail mix, people, trail mix. Sheesh. 11:06pm--Now I'm furious. Fucking furious. A cocked gun with no target. No idea what to hate or be mad at. But I'm fucking furious. Decadron. Oh, I can hate those pussy Senators (both sides of the aisle) who backed off the (admittedly kinda weak but a start) Universal Background Check amendment yesterday. Cowardice at a titanic level: lobbyist support. Dead first grader. Sure, no brainer, you fucking hollow ugly whore. I hope you get a cancer that's old school like mine and chemo eats you and eats you and you recover but then relapse and it eats you and eats you and you weep alone in a mechanical bed that doesn't give a shit about your vote count, and your spouse falls and breaks a femur visiting you at the best hospital in your district or state, a nice compound fracture the pierces a bloody bone fragment through the mulch around the spring forsythia on the grounds of the lovely hospital and maybe the fracture gets infected and everyone's in the best hospital in your district or state but cancer meat can't fraternize with civilians so you're not there when Mersa takes your spouse and you are alone and then an ex-con who drove a boosted Chevy Cruze to a gun-show in one of the best parking lots in your district or state to buy the knock-off Beretta finally decides to blow his fucking girlfriend's head off, but she's kinda used to when he does crank and so she ducks and the mildly misshapen bullet goes out the car window, passes cleanly through the chain link fence, and tears most of your son's cheek off before severing enough that, after screaming a confused lost peal that people on the playground say they'll never forget, never, he dies in the arms of his art teacher. Not you. I hope that happens to you. I'm living enough pieces of that to know how awful it will be. I hope that happens to you, you bastard. Coward. Senator. Decadron. Good night. Holter
Thursday, April 18, 2013
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.
Saturday, April 6, 2013
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
72nd between Columbus and Broadway
And remember, you sissies, it's just a check swab. Sheesh.
Wednesday, April 3, 2013
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.
Monday, March 25, 2013
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