Saturday, May 25, 2013

Moving on up

Moving Day.

As I have mentioned once or twice in this blog, there have been some technical issues here at Blogger. There is a definitive possibility that some of them were malfunctions on the part of the writer, as any number of my parts and gears and motors have been shot to hell or just good old loopy at various points.

But there's also been simply annoying aspects like not being able to upload photos from an ipad or phone without agreeing to let Google (who owns Blogger) drag all your shit into the Cloud where they will carefully sell most of it to China, Syria, and, worst of all, Wal-Mart.

So with the help of a college pal who does this stuff, I am migrating the blog over to Wordpress. Hopefully everything leading to now will migrate as well, and after a certain period of time I can shut this end down. We'll see.

So please follow the below link to our new communal home in leukemic joy. And once you get there I'll tell you the plan for the next couple weeks, because we fly away in about 14 hours.



Wednesday, May 15, 2013

Limbo Lower Now

So, while they don't actually cure leukemia, Maryland crabs--in Maryland--help deflect its effects, and the effects of its treatment, and the effect of being ground down by the waiting and lack of control once you are heading to transplant.

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.

'More weight!'

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

Guess what I got?

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

Yesterday, blow by blow. With bonus blather.

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 

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 
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. 


Good night.


Thursday, April 18, 2013

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.

Saturday, April 6, 2013

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. 


Wednesday, April 3, 2013

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.