Center Down

The other day a thunderstorm showed the plumbing what a big noise really was.
This Houston apartment complex has oddly, or maybe just badly, designed plumbing. Whenever our upstairs neighbors flush their toilet, it sounds distinctly like they are pouring a Home Depot painter’s bucket full of wet gravel, and perhaps an irate Daschund, down the pipes unnervingly close to our side of the walls. Wakes us up sometimes, with an abruptly-conscious fear of who-knows-what bursting through the stucco.
Well, out of a thick greying Houston dawn yesterday came the kind of sky-ripping cannon-shot thunder that wakes up your lizard brain first, so by the time we humans have cracked our eyes we’re already flush with a deeply animal terror.
Then it rained steadily for at least an hour, and is doing so again today.
Anyway, my latest ‘development’ is known as Hairy Black Tongue:

But N did some internet research for ways to fix it and now I scrape my tongue with the OraBrush morning and night, and it is clearing up nicely.

I have some wafty, grey-mostly facial hair which is, just ilke the last times, growing solely in goatee formation. There’s a tiny scrubland of intermittent filaments on my head, and the possibility that the area of and around my Ommaya will stay hairless as a baby’s ass.

We have a friend visiting whose favorite way to relax seems to be to cook two to five complete meals in about 40 minutes. Every 40 minutes. Between her epicurean hyperactivity, a general improvement in my taste systems, and a mild improvement in my GI issues, I have cleared 1400 calories both of the last two days. Which is good because I weighed 130 at last check in at the clinic. I need to get up closer to 1700 or 1800 before I can think I am on track. But between my improvements and N being the best caregiver I could possibly hope for I think we’ve turned a corner.

And I am no longer smuggling young Sparrows. My tweeting pump has been replaced with what literally everyone calls ‘a baby bottle.’ And there’s good reason:

This thing just attaches straight to my CVC, no pump. The pressure inside the balloon holding the fluid pushes it up the tube and in. This bottle is done so the balloon has returned to its cigar shape. Each bottle takes about 2 hours to drip in, and I’m on two a day. But this allows us to stay out of the clinic more. Which, in case anyone wasn’t sure, is good. But we’re not staying away from the hospital completely.

Now I am going for a tone-change, kind of universally. There are any number of clichés about cancer or other near-death experiences changing people. In a purely practical sense I have been painfully aware of that since my ’10 diagnosis.

But the emotional, psychological, soul, karmic, existential, human heart kind of catharsis or epiphany or trauma or plain old realization: that missed me. And it missed me because I had my shields up against it like the USS Enterprise when a Klingon ship de-cloaks off her bow.

My priorities have been fucked up. Objects in the mirror I’m always looking at myself in are nowhere near as large as I thought they appeared. My priorities were, by general age:
0-1–Shit, sleep, eat, repeat.
2-4–run in circles, make people laugh, jump off stuff.
5-10–run in more complex shapes, enjoy my friends, try not to be sad.
11-three months ago–read people so that I could entertain, charm, or otherwise make them like me, and then use that like to suit my needs at the time, whatever they may have been, tiny to overbearing or overwhelming. And, you know: shit, sleep, and eat.

I don’t mean I was twirling my mustache and draping my cape across my face while creeping up on 7-year-olds armed with lollipops and ether. I tried to be a good husband, friend, son, person. But the base priority was ME, and any good I did or people I was of value to made me glad to be of service to the world, but at the same time made me glad it reflected well on me. I don’t claim to be at all individual in this. There are a lot of us. Many are called actors.

Well, over the course of this relapse, move, and marrow-swap, coming to a definitive point a few weeks ago at the bottom of transplant and catalyzed by, no surprise, my wife, I started to think maybe at 41 and ‘safely’ past two cancer diagnoses and the umpteen “oh shit, that guy coulda died” moments, I should be working hard on a new priority list:

-Not being dead.

-My Love.



-Old friends.


If I can learn to serve those masters first and better, I figure most of the rest falls in line. Because having love and family and the planet at the top of my list creates a barrier to being a selfish, narcissist schmuck.

There’s an efficiency to folding a medical healing and an emotional healing together. Use the same work ethic, use the same stakes, kill two stoned birds, as it were.

There is a logic there, but I don’t want to leave it to logic and efficiency–that’s heartless, and I’m trying to head away from that. N and I have talked a lot, and we’re going to take this change of heart and protect it and grow it. Along with my physical therapy down here, I will start talking to the therapist N found me after first diagnosis.  I’m trying to remember more of the Quaker vibe from my school, and I’m signed up for a meditation class while still down here: sitting still and contemplating…anything, really, has never been a strong suit of mine. Land-shark: when I stop moving I fall asleep. Although that’s actually only true for a very small number of sharks. And, you know, in the water. This week N and I will hit a laughter meditation session: gotta see what that’s like, right?

I still headbang to Priest (weakly so I don’t break my spindly-ass neck), I just bought the latest Black Sabbath (which is very good), and I’ll try to be the most energetic person possible when the doctors give me my energy back (I think they locked it in a drawer on the 18th floor).

So, along with me, I think this blog will change. Partially because I’m getting blessedly more boring medically–no Gnus is good Gnus, etc–and partially because I think there is only so much navel-gazing you kind people should have to endure. You should all have time to stare at your own navels, if only to get at that lint.

So, as my favorite mock-rock band says “This is Spinal Tap, Mark II. We hope you enjoy our new direction.”

I’m not crapping out. I’m embracing a better me.


‘I’m Looking Over a Four-Leaf Clover’ –not Iggy Pop

In fact, fistfuls of years before James Ostenberg (you thought Iggy Pop was a birth-name?) tumbled from a womb, the above lyric was penned by Mort Dixon, with music by Harry Woods. That was 1927. It was made famous by Art Mooney in 1948, and Emmy Rossum is apparently enjoying some nostalgia on an album that includes a great new version.

Here endeth the lesson.

Anyway, I look like this now:


I’ll admit that’s not a lot to go on. In the ATC, almost as soon as you get a room, which can be after quite a wait, they bring in warmed blankets.


Not even Benadryl puts me out like a incubated blanket. Seriously; with the first waft of warmth from one of those linen hugs I am down like a broke-legged horse. They bring more than one and N has been known to hop into bed next to me–between the two of us we weigh about 47 pounds, and there are some seriously fat bastards shuffling through the hospital so I think there’s no danger we’ll break the bed–and we sleep while I get the thousand mililitres of saline and Magnesium dripped into me.

But with all the days off (three in a row over the weekend) we’re not there as much. Except Thursdays, when my cancer doc rounds through the ATC to see her patients.

So it’s Thursday. The doc and Pharm Jim and the NP swing by. I disentangle myself from the cooling but still glorious blanket, and she reports my biopsy results.

Full clear. Minimal Residual Disease clear, everything clear. As clear as an azure sky of deepest summer (‘Viddy well, me brother, viddy well).

Kinda buried the lead, didn’t I?

Partially it is because, as the doc explained, I was clear when I got here. The rounds of Augmented (which is Latin for “this is gonna fucking SUCK!”) Hyper CVAD and some flirty little injections of drain cleaner right into my brain (which was then erased: wheeeee!) put me all the way into remission again.

And I kinda sensed this: that biopsy results don’t mean what they did the first three years of this party. They use them now to just make sure the new marrow is settling in and keeping any and everything away. There are separate tests that determine percentage of engraftment: How German are you? Do you crave schnitzel and a touch of world domination, or maybe just a well-made car and some sandals to wear with socks?

Those are separate tests. Blood tests. Tacro levels. Mag levels.

I feel like a good hunk of the rest of my time here is forced cleanliness and chemical upkeep so that this crushing fatigue can be worked out, moved away from. The radiation doc said radiation fatigue would be like nothing I’d had before.

I scoffed. I succumbed.

The transplant team said coming back up to speed was like love in the Tom Petty song: ‘a long, hard road.’

By this point I was done scoffing. But not done succumbing,

Not in the ‘giving up’ sense, at all. In the ‘when i jump off the rope swing into the river, I succumb to getting wet’ sense. Very simple. Elegant. Exhausting.

But most days there’s a new positive. We went out to lunch the other day. I didn’t eat much, but I didn’t pass out, puke, or piss myself either. I think.

Some foods are just starting to taste reminiscent of what I am pretty sure they’re supposed to. It is with great effort and encouragement from N and my mother that I am getting above 1000 calories of intake a day.

Which ain’t enough. That’s a reduction diet. I need about 1600 to maintain. I’m not maintaining, and it is keeping me weak.

But 1000 beats 600, where I was a while ago. And they both beat zero, where I was in the hospital for a week or so.

That’s progress. I’ll take it.

Not sure what I’ll do with it because I’m really tired. Maybe tuck it behind my head on the couch, lay down, and see if there are any car races DVR’d.


“Someone please tell me it’s not a train” -Cracker

I had my first vigor dream, I think.

Now, since I know a lot of you and how your minds work, I’m not going to leave much space here for you to concoct the kind of imagery I probably would.

All I mean is that, without much in the way of remembered specifics, I dreamed I was vigorous. Capable. Doing normal things at normal speeds. I think at one point I was shuffling through sidewalk piles of autumn leaves (they had autumn here in Texas once, in 1937: eleven thousand people died). But I wasn’t shuffling because I was weak or couldn’t really carry my own weight. I was shuffling because that’s what you goddamn do.

And it wasn’t unpleasant to wake up from. Not unpleasant to recall, a ghost itch halfway down an amputated leg. Not at all. I liked it.

OK. I’m sorry it has been a while. I have a good few excuses; one I’m just discovering now. I’ll start there: I’ve got the shakes, and typing is friggin’ hard. The shakes, sadly, are an expected side effect of Tacrolimus, the main drug helping me engraft, a drug I should expect to be on for many months. It gives me the ‘watch out for that old man with the full coffee!’ shakes something fierce. If I just tried to keep my hands perfectly still, I’d be the fourth best castanet player in the world.


The Tacro is also the drug that leeches Magnesium from your body at an alarming rate, requiring frequent high-dose replenishment. Which leads to cramps, extreme bathroom familiarity, and a satchel full of baby birds.

Mag can be delivered two ways–drip and pill. So every day I get a 1000ml (that’s a liter for you civilians) drip of Mag into one of my tubes. However, the Pharm D, a big fella named Jim, tells us straight up that anywhere from 30-60% of that Mag just heads right for your willy and the toilet, so to some extent they’re just doing it to make themselves feel good. They check Mag levels with bloodwork, and if you need more than the half-faux drip is providing, you get the over-the-counter Mag pills and start taking those additively. Some people I know in the clinic are up to 6 per day. My eyes just teared up thinking about that.

Because while the drip is pretty innocuous save the three hours it takes, the pills are a huge red ‘make my gullet unhappy!’ button. Less than half an hour after taking my first we had audible borborygmi and some bathroom visitations. At some point within the past week–time’s going squishy again, the bastard–I was up to 2 Mag pills on top of the drip; I threw up a couple times and spent a day or two traveling with our trusty pink bucket N was genius enough to bring down here.

However, every pink bucket has its, I don’t know, beige lining? Doctors in many ways don’t give a crap about some symptoms. Especially cancer docs. Cancer treatments are as often as not so brutal (remember:’kill him…kill him…bit more killing…kill him..Whoah! stop killing him. Get this man a Flintstones vitamin and a Sprite, stat!, then drill a hole in his ass and see how we did’) that having stuff like GI issues and headaches and continued weakness barely register because you’re getting so beat up it’s expected.

What they really watch are the blood numbers. And in that department I seem to be doing pretty damn well. There is still fluctuation based on the booster Neupogen they gave me while we were inside (one day my white count was 8! I’m sorry, that’s just hilarious) my average white count seems to be hovering just north of 3, my neutrophils linger around 1.5–2 which is just fine, and platelets and hemoglobin are still kinda getting eaten as I go, but not at an alarming rate. In short, I’m doing well.

And doing well leads to ‘days off.’ Instead of having to haul our asses into the blood lab and then the Ambulatory Treatment Clinic every day for hours on end, our team will pre-plan two-day stints where they feel confident I won’t need blood products infused, and they send us home with a home pump unit and two of the liter bags of Mag. I was trained in set-up, run, and dispatch of the unit. Mom was in clinic with me that day but admittedly didn’t really lock the procedure in–a mixture of not being achingly mechanically inclined and being taught by a fast-talking and mumbly nurse. But it makes sense to me and I taught N, and I think I’m on my third set of days off, so sixth day.

Sorry, that was a lot of math, and I can’t forget I’m in a state with an educational system overseen by Rick Perry and his brain trust:Image


Back to a day off: it’s glorious. You just feel better not in a hospital. They are horrible places to heal, even the best ones. It’s like I imagine a grocery store is not the perfect place to be the best eggplant you can be.

And N long ago got trained and cleared in removing the bandage over my CVC tubes, cleaning up the site, and putting down a new dressing. Plus the daily flushing of all three lines so they stay clear. We’ve taken on a good bit of my maintenance, and subsequently get to be ‘home’ more, which is great.

Now the little pump runs on 2 AA batteries, and uses a basic fluid-pump squeeze technology to get the Mag up the tube and through the hole in my chest. The liter bag is bigger than the pump, so all the parts are smaller, etc. In the hospital the huge bulky pumps click and thunk and groan like old remote-control cars trying to screw at the bottom of a toy box, but this little pump’s noises are, well, little. And very regular. And sound alarmingly like a nest of baby birds, not so small that they are still in the ‘cheep’ phase, but a week or two past that, where it is a sound somehow still high pitched but also guttural; the need for regurgitated worms having become somehow more insistent, more dramatic. And the home pump comes in a somewhat impractical little satchel. That’s all I can think to call it. Stare at it all you want: its a satchel.

So I walk around around the apartment, and sometimes the outdoor hallways or out to a shady spot by the pool to watch N do her laps, and I’m dead certain someone is already calling Animal Control to report a bald junky who is stealing adolescent sparrows and not feeding them. “That’s him, officer. The one with the, with the…”

“Satchel, ma’am?”

“Yes, that’s it exactly! Oh, I do hope those birds are alright.”

OK, getting long-winded (getting?!) and have been away too long, so:

A really good friend was briefly in Houston and we got a chance to hang out a bit, get some food, and SEE A MOVIE! We saw RED2 and it was very good. Then again it’s been so long for me that I probably would have found “Lone Ranger” to be a deeply insightful and layered look the the homoerotic undertones pervasive in white-native interactions throughout the period of the westward expansion.

The NP took a biopsy of flesh from my arm–just cored out a little plug like a pencil eraser–to analyze the level of skin GVHD I have (which doesn’t really bother them, they just want to know).  It’s been confirmed that I have skin GVHD, a mild case which has so far been controlled by N applying steroid cream three times day. 

Thursday I recorded another HBO job through the kindness of Producer Max and the folks back in New York who have been very understanding. And I am 20% of the way through a home-record audiobook I’m recording in the closet.

Friday I got my 30-days-out Bone Marrow Biopsy/Aspiration. The pulls (three, I’m pretty sure) weren’t in the top half of the pain catalog, but the nurse had a hard time setting the lidocaine so the actual coring was preceded by a lot of painful jolts when she got under her work and poked my very awake meat.

Just in the past two days I’ve felt a tiny bit of strength, vitality, return. My hobble-walk is evening out, I walked up a flight of stairs, and I’m sleeping in slightly longer stints.

Which is not to say that I didn’t just take a minute-nap between the words ‘stairs’ and ‘and’ in the above line.

Baby steps to the marathon. Baby steps.


Top O’The Evenin’ To Ya


So, anyway this is me.


We were released yesterday to go ‘home’ to the apartment here in Houston. And today, we went back to the hospital. Whee!

The plan is that I’ll go in every day for bloodwork and whatever needed infusions there are at any given time. There is a basic 3 hour drip each day for a while because one of the main drugs guiding my marrow into its parking space takes out a lot of magnesium so it needs somewhat constant replenishment. And at any given moment I’ll need blood, platelets, what-have-you.

So there is a pleasant busy-ness to this return to the wild. Because every other time I have been tossed from captivity, I tend to freak out a little–waiting with my gut tense for something to happen that is horrible, or confusing, or just urgent to a point that we have to rush somewhere when I’m so tired.

And I’m tired. Like I can’t recall.

I’m sure I’ve been this low, or near it, before. And, my blathering as evidence, I ain’t dead yet.

But I weighed one hundred thirty two pounds for the bottom three days. I’m only up to one thirty four. I didn’t eat anything solid for at least a week in the middle of this month. During the worst of the mucositis I was in a dliaudid haze bigger than Dom Deluise’s britches.

So, I’m out, and I’m still walking my mile–or the rough equivalent we’re trying to figure out here in the real world where they don’t mark it off for you–and we’re delirious to be released. Delirious.

And busy. Which is good. It may just seem like we’re busy because I’m so empty that a list of things to do that is two small activities long could be the whole day. When I walk now I can’t walk like a regular person, because I’m so atrophied and tired that I’m kind of pegging along like a circus stilt man. Except without the seriously cool thirty-foot long American flag pants. I always loved those.

So fatigue and weight-loss and magnesium deficiencies and all that hooey are just more challenges, and we’ve been setting them up and weakly, droolingly, hemoglobin-lessly knocking them down for a while now. No reason to think it won’t continue apace.

But I’ll be honest, typing this much was like running a friggin 10K. Its good to proclaim it, celebrate it, focus on the next steps, literally and figuratively. But DAMN, I’m tired.

So I’m going to bed.


Where was I?

Happy Birthday, America.

The tiniest gestures, from the tiniest places, are huge. Huge.

This has been the comeback week. Or rather, the come-back week. There’s a difference, enormous as a tiny gesture.

I’ll cut to the chase because teasing is mean: my white count today was 1.4, and the other number they want to keep going up, preferably to 1.5, was 1.09. So I have officially started engraftment. All the talk of ‘we’ll tell you your % as you go along’ is so much jolly bullshit. But I don’t care in the friggin’ slightest because the incline I am on tilts up in the right direction.

So remember kids: if you work hard, and eat your tepid cream of wheat because your mouth has rotted out and all of your mucous has sloughed off in your poop, but you do finally poop after an 11-day hiatus, and you are polite to your elders, maybe you, too can grow up to be:


The strangest bobbysoxer on the fucking planet.

Those are TED sox, TED standing for Thrombo-Embolism-Deterrent. But they’re basically for cankles. They squeeze the gooey you-juice that has suffered stasis in your system back up into the parts of you where your system can process and eliminate it. My ankles look my own again, but the last day was really painful and I was getting unsteady on my feet.

I know; there are folders full of women who’ve been pregnant, all making yawning faces right now and talking about how much bigger their feet were. Fine: have your day.

But if you are me–front view:


with the 40 pound IV pole that defines you so like a ball and chain that to say ‘ball and chain’ isn’t even an interesting thought, and you stay me, rear view:Image

so tired you don’t even realize you are looking out a closed widow,

Then you are in a pickle.

My world was getting smaller and smaller, and me smaller with it. Tiny, in fact.

I felt tiny against the time and the battle and the expanse of experience behind and before me.

Tiny. Defeat-able.

And then in music therapy–something I openly scoffed at before learning my damned lesson–a woman started crying. Music therapy is as mock-able as you might think: a local harpist/guitarist who comes to the cancer floor once a week and gets patients and their caregivers talking a little bit between mostly solid but on the cheesy end folk and pop music. It’s all so earnest, and after the first one kind of repetitive.

Then a very quiet caregiver whose patient hasn’t yet surfaced made a request. You just have a list of lyrics to go through.

She is Mexican, and asked for John Denver’s Country Roads, and when the therapist asked why, the English she has broke a bit more, she tapped her chest, she cried a little more, and she said ‘that song is just me.’And we sang it. Six or seven tired, beaten people, some of them–like me–holding on with what I hadn’t yet realized was a sheen of sweat, N’s strength, and a fingernail. We mumble-sang through it, and Flora didn’t even try to sing. She just cried, wiping away a tear to make room for another, not embarrassed, not wailing, not alone on this wonderful, sad, horrible, horrible floor.

Fuck cancer.

I am not going to give that moment the epiphanic heraldry it may deserve, because everything up here flows like sewage back and forth a little. Even realizations that you have to get off your ass and just plain keep going don’t happen in that kind of a clean vacuum. They are all like the rash I am now treating on my shoulders and upper chest that is likely a version of Graft-Versus-Host Disease that the Drs pretty much expected to see and don’t freak out about and may even be a mildly good sign that your engraftment is taking place and that the new cells are digging in a little, trying to make themselves a home. I like a feisty stem cell.

Later in the day in physical therapy we smashed the shit out of a piñata with an American flag motif. That time the caregivers for some reason all deferred to us, and it was just two of us, this lovely, tiny woman who lives in Pittsburgh (suffering through this with her husband and two boys), and me. Everyone else just watched, unabashedly supportive. The woman actually said ‘this is how I feel about cancer’ before she took her first whack. How cheesy is that?

Very, very cheesy. And wonderful. And if you need it, water in a desert.

And so from those tiny little turnarounds, blessedly mixed with my numbers coming up in a slow and orderly way, and me being off the pain pump because my mucositis is so much better, we find ourselves here, July 4th. And it’s Pole Parade Day! Each patient/care unit decorates their IV pole and parades (hence the name, most likely) around the whole floor, and the nurses get to vote on a variety of categories. We felt Most Enduring should go to this lady:

ImageWho, despite the fact that her Liberty Torch flashlight had no batteries, held it in proper beacon position the entire lap of the floor, never wavering or faltering.

I wore spandex that were snug when we bought them fifteen pounds ago. I weigh 138 today and need to get back to that whole eating thing now that my throat is almost human. N made what can only be referred to as genius: a First Lady Cape. A selection of (democrat except for Mary Todd Lincoln but she really was one really) First Ladies photos pinned to a garbage bag draped around my neck.

ImageMy mother braided some crepe paper into a kind of American Lei, and Jim wrapped paper around his head in a basic head-band. N wore a sari created from a plastic July 4 tablecloth (mom’s idea), and was warmer within its non-breathing confines than she’s been so far.

We looked like complete imbeciles. It was glorious.  We won “Most Creative.” I apply that equally to my new cells. Wilkommen, gentlemen. Get to work.


You grab any goddamn excuse, any handhold, and moment of zen, any second of reprieve. You push and you push and you push and look the shittiest possibility right in its goddamn face and accept it and dream a little about best outcome too when you can.

You do what needs doing. You right foot. You let foot. You repeat.

And this…this is a puppy


I’m tired of waiting. So tired. So waiting.

I have been out of touch for a bit, and N and Mom/Jim state pretty clearly that the Woodchuck Post of the other day does not leave sufficient evidence that things are going well. Here is another try.

Tomorrow is day 12 post-transplant. Usually (and that’s a wide array, but it is where the experience points), engraftment of stem cells takes place somewhere between days 12 and 21. So we are headed in the right direction. I will fight with everything to get there. Do all of my part. But right now my part isn’t very interesting.

Things are rough. Really really rough. But that’s OK, because that is all that is being offered on this menu right now. I barely remember the Woodchuck Post; only that I hoped it got some laughs.


Part of the problem is that I’m trying to write standing up just because of comfort, but more often than not I start to miss keys and/or nod off and the post cracks. I’m amazingly tired in a huge and overall way.

‘They’ said that radiation fatigue was a different kind of tired. And they were right. Divinely, awfully right. But somehow not clear. It’s not ‘their’ fault.
The problem is that I think the truths are so elemental, so base, that to describe them feels disrespectful to their power. So you don’t define them. You just fall asleep while walking. While spitting. While sleeping–guarantee I’ve done that between twenty times today.

I’ll try to explain:
You know when your blood is so insubstantial that running it through your veins doesn’t even help you stay alive?
You know when the gestural border between being asleep and awake is a parting of the lips, a glance to the side?
You know when it is so impossible to create the energy required to think about the energy required that you don’t, and instead keep standing, swaying, in the room, until your wife kind of has to call out your name and ask you, in a deeply serious, quietly frightened tone, if you were about to nap? And you were. But didn’t know until you were asked?
It’s like that.
All the time, with no connection between sleep and wake.
I’ve been in limbo, the real purgatory, for I think 5 days.

It took me fifteen minutes to type the words from ‘I’ll try to explain:’

To here. And I haven’t gone back to check mistakes. There will be a total of: 24.

And that is OK. Fine. All good.

Bone marrow transplants have this huge reputation as being the worst. I have had a pretty impressive list of horrible things happen to me since original diagnosis. I’m not getting macho, it is just what you go through. Your body is actively confused and so trying to die, using the mechanisms it has perfected (that are now broken) in the most efficient form of living we’ve found so far.

People who survive these little adventures don’t all come out the other side looking like they’ve just made it through something intense. But they have. And during it I think we all are not OK with failing, not at all OK with dying, even a little bit.Image
It just seems so…likely. You look at what the Drs are doing to and with you, you track your numbers, you watch everything starting from the tip of your tongue from your lips on back and deep into your body rot and, hopefully, you start to regrow.

You have no choice but to start seeing it from the POV of ‘other’ because everything has blurred and you are the protagonist in a drama that seems so clear: I’m watching someone disappear. I wonder when it’ll happen. There’s “non-gluten German chocolate cake,” N tells me. Well, the bit of bacteria (in my CVC lumen, or line, not in my body) has a Graham strain of Streptococci. So maybe through N’s involvement I will become a Gluten-free German ex-cancer patient. That guy would have the energy to sit here and write this. That would have a nice roundness to it.

But you’re OK. That is what I want to convey to you, today. I don’t want to paint this grey picture like the description of a bird dying gently in National Velvet. I am reading it now: ‘reading’ is a barely respectable word for that: I have been reading it since our arrival over Memorial Day, so almost exactly a month: six chapters behind, and it is lovely, and dying, but not because of anything morbid or bad.

And I have these emotions, and I have photos, and I have N’s bullet-point list. The emotions are the pre-cancer set I arrived with, quite altered by the final-ness of why we are here in Texas. It works or it doesn’t. I’m raging against the dying of the light, don’t doubt that: it is just that I have a small set of jobs right now to hold up my end, and I am doing that, so everything is OK, just…weird.

There are pictures on a digital frame next to my bed.  They are the photos N and an intrepid aunt grouped, photos from dear friends and family, plus a large selection from our own files–nothing fancy, just pix. And ‘it looks like this today’ stuff. Pals or relatives or whomever were hit up for a cross-section of what people perceived to be my/our life. Just a random sorting that would, hopefully, when un-sorted and laid somewhat randomly in the digital frame and displayed on ‘shuffle’  non-stop by the bed, stand for something.

There are so many dogs. Horses and music and motorcycles and cats and stone, sure. But mainly dogs.
Ours, others, smart, suburban, mountain, ranch, badly trained, quiet genius, mostly mutt–the only dog, really. They define me, us, in the refraction of all the complex vast weakness we are,
and because they exist, at all. I will, too.

Because they exist, at all. I will, too.

They won’t be in here because getting them off the picture frame in the hospital room isn’t feasible. Just know that they are there, and that, when I awaken in the night because the back of my throat is turning into gristle crystals of drying meat, I look to those pictures and resettle.

I have mucositis: all the mucous membranes in my body are dying and sloughing off because they are fast-growing. This is by far the most horrible and painful part of all of this. If you want a silent and indefatigable enemy, pick yourself. Then: you’re fucked.

That is not a lozenge, that’s me. The radiation and the one-day chemo are designed to bring you to the point of mucositis. That is the indicator that you are ready for colonization by German non-gluten Graham-negative chocolate.
The actual ‘transplant’ is a boring transfusion of shit that looks like any other blood product, dripped into you. It takes a Lenscrafter, and hopefully you have been medically gutted enough that you can start to linger too long in the chambers of the sea, by sea-girls wreathed in seaweed red and brown. Throw in TS Eliot: why not? It means that in about an hour you get a delivery of life or failure to thrive. Throw in Nixon; why not?

But mainly, it’s boring. My white count hit .2 again today. That is a RISE to .2, the second time it has risen to .2. It has gone back before. That is all OK. If we get 2 days at .2 or, god forbid, more increase tomorrow or in the coming grey days, we will know we have passed out of the opening phase of lingering, and then it is just a perfectly pleasant awful wait to hopefully keep improving.

I saved a piece of me to dry and show the Drs. I doubt they would have been impressed. But I was. This is Holter Jerky: Pen Cap for Size Comparison Only.

Mucositis requires Dilaudid for the pain. This is administered through a happy button.  I hate Dilaudid. It is the first drug I had to take the first night ever of having Leukemia and it haunts me still. I live in a very lucid terror of being addicted, of having to even have that battle with me over “I want that.” “You shouldn’t have that.” “I want that.” “Fuck you.”

And Dilaudid also stops your bowels totally. Mucositis makes eating (hell, swallowing) extremely painful. So between it hurting so badly I don’t want any food of whatever consistency, and taking in so much IV nutrition or fluid, I have neither eaten nor shat in more than a week.

There is a lot of drool. Plain and simple: when your mucous membrane starts to rot and die and refold and slough and then regenerate, you drool like a mother. You can choose to fight it with a drug that super-dries your mouth region so when you wake up suddenly when “vitals” are taken at midnight-ish and 5am-ish, you rip your lips trying to open your mouth…there’s only so much Vaseline you can load on your lips before sleeping. You can fight it with a suction machine that takes the drool away like at the dentist but even on low it has a lot of power and eventually is hurting you also. Or you join it by just drooling all day every day, learning the specific atomic weight of drool so you can spit cleanly into passing trash cans as well as your own so as not to make a mess.

None of it works, though. Regardless, you are drooling. And that is gross. I’ve spent two nights trying to get  a little sleep around not drowning myself. I have failed.
No biggie. If I had hair to tear. I might.
But there are all these dogs, so I am
Dogsitting a digital frame.

Eating is almost impossible. I am on day 11 I think since transplant and just ‘put away’ four teaspoons of organic corn soup in about 40 minutes. Champion. Nathan’s, here I come. I’m gonna stop trying to eat again even though I got to the point two days ago where the concept of not eating seemed viable. That is supposedly a good thing, a good moment. yeah, well: lemme know when it shows up willing to work for my supper.

The food difficulty is usually shown by single eruptive hiccups, followed by a strong silence, and then the sound of me thumping my feet and making faces and noises. Thump, “aargh, wh-wuhn!”

Oh, and I have cankles! 🙂 These, apparently, are cankles!!

I have radiation burns gone past fresh and meaty to a more pitted and freckled now across the top of my shoulders and back and head.

I have been doing very VERY half-assed union work of the NEWYORKCOALITION4UNITY (Eventually I hope it to be referred to as ‘The NYCo’ or at least Staten Island Chuck, but we’ll see). I’m working my butt off to help lead the union, but as you can maybe see, my butt probably isn’t much help right now. But I try.

N and I have completed one 500-piece puzzle. Shocking subject matter.
We’re getting some great cards from near and far–though mostly far.  There have been a lot of aunts and cousins on this part of things. Cool, caring aunts and cousins are fucking fantastic. Just plain old fucking fantastic. I’m having eclectic Bowie-reference throwdowns with people: they’re doomed! Doomed!

At some points some nights I try to use Remeron as a sleep aid, but I found myself drawn into a dream/hallucination of having killed, assassinated, or simply silenced NBC’s Mike Taibbi in some sort of British Bourne Ultimatum-esque trick double-cross killing. Pretty sure I didn’t do it, but you never know. Besides, he’s likely NY Union, so why would I try to take out one of my own?

Day 7 was Day 1 (Doctor Math!!!) of Neupogen, which tries to raise white count. It’s a little wonky start if not by design then by pharmacology, so engraftment stepping up and staying off the floor isn’t guaranteed, but we are at that point–the first day of progress when the white count creeping from 0 to .1 or even, god forbid .2, may be lurking. And supposedly things pick up pace a bit after that. And because that is a medically upped pace, there is often bone pain in the extreme once or twice.

The trick, N found on The LLS sites but posted there a while ago through an MDAnderson hook, is to take a Claritin, which somehow mitigates the horror of adding bone pain to the land-fill I’ve just taken you through.

But Claritin only comes as a pill. So right there: you’re fucked.

Everything else I take now is IV. Physical swallowing has been too hard for days. But if you are sent your Claritin, in you go, face first. You may find your tongue has fused to your hard palate since the last time you were in the neighborhood. Every Dr and Nurse and Aide has a goddamn LED flashlight and are just OVERJOYED to get right up in there and say “Hmmm, ok, now under the tongue.” And when the flesh-web you had been developing rips right open with  an audible ‘tink’ and then this tearing-paper noise like “snftilktrt!” and every MD or whomever with their leering mug stuffed up in your grill rears back at the same time making this squeegee face, you know you’re at one of the best facilities.
There’s just nothing at certain points to stop it from sucking.
And it sucks.
I hear leash jingling. Let’s get moving.
Because of the dogs, we’ll see.

I have been revisiting Methotrexate, and Decadron, and Tacrolimus–the actual engraftment drug put in there specifically to get your bone space and the German guy’s now-my marrow to make nice-nice forever. I forget why but I think it may have something to do with transplant. Methotrexate was a four-set infusion and today was the last day. That also left me feeling mildly ‘final.’

Food is great when you can eat it. They feed patients free, so you can try your luck at any of the many orders that dwindle in desirability and/or ability to be eaten. I ordered lunch three times I think on Thursday. And had one sky-cleaning set of farts that meant that my bowels were not blocked, merely unavailable for more than comment, and awaiting input to allow them to speak their mind. Their expansive, imaginative, sweeping fart-mind.
I have to ‘shower’ every day, not a strong suit for me in health, but especially tough when I have the CVC wound being kept actively open with a less water-proof covering. But I have done it and will keep at it.

NYSTOP is a dust-like product for areas where one may have recently gone through something like rapid hair loss and maybe also a little more sweaty and strained than usual: I’ll leave that one right there.
There is a toy we call the Inspirational Lungs (originally called an Incentive Spirometer) that keeps you working your lungs so they don’t give you pneumonia to make recovery difficult. But I’ve walked at least a mile in here, trapped in here, just about every day since getting in, so the lungs are getting their work, and I will not leave it be, goddammit!

And then there’s Salt and Soda–what sounds like a mildly quaint beer Gastropub somewhere here in Houston–is actually a mixture of sodium fluid wash and baking soda. And you have this damn schedule that you are supposed to do inspired lungs and salt and soda every two hours, not necessarily the same two hours and then some sort of jelloshot thing to momentarily deaden the throat pain and remember up above about falling asleep while you’re typing and you get the idea…not a lot of sitting around in this place but it’s all good and I’ll do it dammit!


It’s the same as the same sad Echo around here–Tom Petty

I have not been able to muster an echo of myself to respond to an echo of a response to to the world these past days.

And that is TOTALLY fine.This is how I think I have spent my time, when upright.


That’s my room here at MDAnderson. N and I thought it fancy when we first got here. Now I just think it. Great room, but we made the mistake of watching MQueen and Hoffman in Papillon a night or two before we came in.

It’s not that the room isn’t great and huge, but, you know, prison? Exile? You get the drill.

Anyhoo, I’m tired at a cosmic level, which is still part of the plan. My White count is zero. I am entering the day 7/First Week mark. And no change is expected, acknowledging that this part, engraftment, is its own animal, and I just need to keep changing the paper and refilling the bowl.

I hope to have the energy to (well, fucking do anything, really, but) be more informative in the near future. But I felt this was about as long as I should go in this delicate period. But I had to at least toss a Punxatawney Phil and put up some face time. So: hello. I’m tired.

Have you noticed Punxatwaney Phil’s likely main rival is Staten Island Chuck?

Are you serious, New York City? Staten Island Fuckin’ Chuck? I have lip sores shaped like Jones Beach, the deck of my drug/drip embarking vessel is lit up like the Millennium Falcon’s goddamn dashboard, and between seven platelets and maybe some spare mucositis I coulda come up with a better name:

“So whadaya we cuall this damned rat?”

“It’s a fuckin’ woodchuck, right?”

“I look the Bronx Fuckin’s Zoo t’you, Zittto? Am I the Broooklyn Botanifuckulcal Garden? Suck an egg.”

Jesus, Mceary, what crawled up your ass and died? Have a Malt Lquor, or something.”

“Yeah, yeah.”

Anyway, at least that piq-squirrel bit Bloomberg’s hand, made him wear those brand new work gloves each. Rich-guy cop-out.