Tuesday, September 28, 2010

This one's for me--Tom Petty

This one's for me
This one's for me
Not for anyone else
I need it, you see.

I threw all I had
into the sea
Now I want a little back
This one's for me.

You don't even know what you've got till it's walking away.


We knew that our return to New York would be a return to a new and possibly difficult chemo regimen. So Baltimore was free time. And we used it wisely, both together and in our own ways. We know each other well enough to know that sometimes we enjoy ourselves most together, and sometimes what I think is fun strikes her as, well, just stupid.

But, with promises to be careful and not let being on my childhood stomping go to my head and make me forget the inherent fragility, we both had a wonderful time.

N's readings went really well:



She had a good crowd at College Park, and sold out her books.

Then she had an even better crowd at the library in Baltimore in Highlandtown, under the blessing of the bust of Frank Zappa.


Where she sold out all of her books again.

The reading was well attended,


and Hank and A.Jay and I had a chance to recreate a photo that had been taken of us at my mother and Jim's marriage, leaning against Edgar Allan Poe, another deeply valued Baltimoron.

I'm crouching because I was a lot shorter than they were back then.

And we all had hair. Lots and lots of hair. But we're pushing forty and I think we're doing OK. My shirt used to fit better, and will again, and A.Jay (inexplicably nicknamed Red) was hoping to win a fourth blue ribbon at the West Virginia Apple Butter Festival, where the beard contest is something of a main attraction.

After the reading, a bunch of us went out for crabs.

I think I had eight, which counts as an extreme example of restraint. Seriously. The best two moments of the night for me were provided by Red's kids. One told my mom that for a long time he didn't like crabs, but he liked the process of getting at the claw meat, so he would just prep claws for his mom.

I did the exact same thing for years until I wised up, realized that Blue Crab is indeed a delicacy (the cockroach of the deep, and proud of it) and started hoarding the claws for myself. Then I got a bit more wiseder-up and went back to prepping a few for N or mom, or both, in between slurping back-fin gobs for myself.

Later in the evening I was telling a story of A.Jay's first ski trip, a voyage we took with our Homophobes--I mean Boy Scout troop. Red and I took one lesson slide down the green dot hillock and then figured we were ready, so we went up the real lift to a red square--intermediate--and hurled ourselves downward. I somehow managed to stop/fall near the bottom, and was rewarded with the sight of Red, skiing a line as straight as the scout masters pretend to be so they won't get kicked out. He hurtled past the end of the blue square and went on onto the green dot practice hill, at a good 25 miles and hour.

Where he proceeded to get launched off a bump, fly perfectly trough the air, and spear a poor unsuspecting woman in the base of the spine with his left ski.

Which sort of stayed stuck to the nice lady, along with the boot.

Red, however, left sock flopping, half off, began a gorgeous set of mid-speed somersaults in the air, followed with alarming alacrity by some less genteel somersaults on the snow, resulting in what skiers refer to as a yard sale: most of what you were wearing only seconds before is now strewn across the accident scene like some wintry and overly-specific flea market.

At the base of which, Red, in good if lightly concussed spirits, tried to regain control of at least one eye long enough to see if he had killed the nice lady.

Upright, eyes wide, and with a ski and boot resting behind her, all she could say was "Are you OK?!" Apparently the depth and genuineity of her down parka saved her from the lumbar puncture we thought she'd suffered through.

So I am sitting there, surrounded by crab carcass and people I care about, and the story ends.

N points out that Red's boys were rapt, frozen, devouring the story. Their dad had been Young?! A kid?! Had accidents?! Laughed about it?!

It was a lovely moment

The next night N and I met Hank and Reb for Hibachi steak, and the prerequisite Onion Volcano that comes before it.


Two nights in a row I had pushed the limits of the food restrictions. OK, who are we kidding? I had taken the boundaries, loaded into my truck, driven them to the state line, and told them to never come back.

But during the days I was still eating clean and safe for the most part, allowing for a bit of safety should the evening gorge prove debilitating.

But it all went wonderfully. Food, friends, N, coke on the rocks. Good stuff

Hibachi for Birthday was started by Hank's family a long long time ago for his birthdays. They did it a few years running, his father always embarrassing all of us by asking the chef his name. This was in the pre-outsourcing days when people from other countries still felt they were allowed to use their real names, as opposed to the nice man from Hyderabad named Prakash--which isn't all that hard to pronounce if you take the American Flag out of your ears and your head out your ass and try to say it--and instead says 'My name is Kevin, how can I help you?"

Anyway, the chef would say "My name Todaji" and Hank's dad would say "Toad, great to know you. I'm Geoff Mitchell, this is my (then) wife Mary Ann, this is our son's friend Holter (which I learned while visiting Japan years later to pronounce 'Hortel' so that the Japanese L and R reversal would kick in and they would say my name perfectly) and this is my son Henry, and it is his birthday! So we want the best you've got, Tad, because it is a special day!"

He meant well, but his hearing was going even then He'd lost the high end working around munitions in the army: one of the best car-ride games was to make our then-new-fangled digital watch alarms go off and hold them right up to his ear from the back seat, and he wouldn't hear it. We could do that ten, maybe fifteen times and laugh so hard we'd snot on our shirts every time.

Anyway, after they stopped doing the hibachi birthday, my family picked it up, and so Hank was the guest. It kind of blossomed and became a perennial meeting, and grew as we found out that the mother of The Smartest Man In Medicine (one of mom and Jim's best friends) had a birthday near mine--or I guess mine is nears hers, allowing for seniority and respect. So she (who also happens to be another avid Scandinavian mystery fan) and her clan and me and mine and my friends and N and flipping knives and fried rice in the shape of a heart. And the onion volcano. Some things just get better over time.

The next day N went down to DC to catch up with a friend for dinner, and I ate a cheese-steak from Pepe's.

I know, I know: Philly blah blah blah. You know what? Philly cheese-steaks bore me, OK? They try and all, but Pepe's uptown and Steve's Lunch downtown in Baltimore make a cheese-steak that is an event, a goddamn gut-adding, artery-clogging, if-it-doesn't-drip-off-white-shit-on-your-shirt-you-ain't-eating-it-right double handful of grease, shredded iceberg, tomatoes, mayo-esque...stuff, fried onions and the lowest-grade frozen beef slabs available. Culinary orgasm, plain and simple.

By that day I had run twice during the week and eaten bland food a lot, so I risked it. And my pancreas had the common decency to keep it's fuckin' opinion to itself, and for that I appreciated it.

Then we went sailing.


N loves a good sail, but loves being left to do some work and lie in bed and read Scandinavian mysteries twice as fast as I can as well, so Hank and Reb and Rich and I spent five hours on so on the Bay.


The wind was choosy and we mostly sailed-then-motored in lazy circles at the mouth of the Patapsco where it spills into the Bay. Rich dove in and seemed to avoid the jelly-fish that are ranging further in this year than in recent memory because the drought has raised the salinity and so they can go deeper into the rivers and creeks than the normally do.

Then an adolescent seagull fell on me. I shit you not. When I told N, she said it was good luck...OK.

He 'landed' on me, fell of, bounced off Reb, who was at the helm at that point, then spent the rest of the trip hanging out behind the tiller, watching us with trepidation but no real fear.


We all thought it was a pigeon. N, who knows pigeons, knew better. Now, looking at the pic, I concur. But the "...a pigeon with AIDS!" punchline got pretty beaten to death for the rest of the trip. He didn't look sick, really. But he didn't fly, and I'm pretty sure that birds tend to do that more than, well, ride. Or sail.

For the record, pigeons with AIDS who are most likely adolescent seagulls who are tired or lost don't like really spicy chips as much as they do crushed pretzel.

Once we docked, Hank lifted him off the boat and put him on the dock, where he didn't seem too interested in leaving. He flew a little, but not much. But he seemed better when we left than when we...received him from the heavens.


I drove home from the marina and Mom and N and I had a calm Indian meal from the place near Hopkins. Saag and Tikka Masala under the moon in the backyard: peace.

The next day we went to a Ravens game. I know; you didn't think it could get better. But it did.

Just N and me, after my lovely mother made some short notice calls and probably paid too much for really great tickets provided by Kendy Chan, the head of operations for Ravens security. Great guy, very helpful. We sat here:


In one endzone corner. Anquon Boldin's second (of three) touchdown catches from Joe Flacco was pretty much in our lap. The guy next to us had the same 'hairstyle' I do, and offered us sunsflower seeds and lollipops (I thought that made him a pedophile, N just thought it was nice of him. She was, shocker, right.) The guy two seats to our left had the smallest bladder in football, knocking not one, but two waters out of the beer-cup sized drink holder attached to the seats. Ah well.

The Ravens beat the Browns. It wasn't the win it should have been considering team talent, but it was a win, and N's first NFL game, and a grand time was had by all. We stayed till the Ravens started taking a knee to end the game, then drove home for some stir-fry, then drove back to NY.

And here we are again, back at the scene of the crime. The river below has been alternately shrouded or totally hidden by the rain all day. I started my 24 hour methotrexate drip at 10:30 last night, with the attendant sodium bi-carb and fluids to keep my kidneys from failing. Then at 10:30 tonight I go off the meth and onto the Ara C, also in significantly higher doses than I am used to. So far I have not felt bad, but they say it is more likely to hit when we get home. Ad he Ara C had more nausea issues than the meth ayway.

A couple hours ago I had my first LIVE! DIRECT FROM HELL! THIS IS SPINAL TAP! in a while. And tomorrow I get another CT scan of my abdomen to make sure my pancreas is no longer an issue.

I am also back on the pred, and deeply depressed therefore. But it is only the days we are here and a slightly lower dose, so I think it will not get me as ramped up and rabid-dog twitchy as last time. We'll see.

Once the Meth has been out of me for 24 hours--during which they hit me with Ara C to be efficient--we're checked, and we hope to get home during the second half of Thursday. They'll send me out with a Neulasta shot which will cause bone pain but should help me recover fro the chemo faster.

I am still totally unsure how this regimen goes. It is all new again, like seeing people you hung out with years ago but they're all on steroids now and so you aren't sure if they'll just laugh a lot or each pull a tire iron out of their trench-coats (did I mention they were wearing trench-coats?) and beat me until I crap myself.

Or something.

Talk to you soon.

Tuesday, September 21, 2010

Good morning Baltimore






I would be more excited to quote the Hairspray song if I had not been in the original. The musical and the recent remake are fun, but the beauty of what John waters did with the original...well, it was threefold. First, he went to the most shocking place left to him filmmaking: sweetness and heartfelt nostalgia. We had to add lines with the word shit to make sure it wouldn't be a G movie.

Second, that film is the most quiet roar of social conscience heard in this country in years. Through the camp and the dance and the rose-colored memories of high hair and dirty boogies, the injustice heaped upon blacks at the hands of whites runs riot over every frame. This is white shame delivered in the sly way only a huge-hearted miscreant can deliver it.

And third, there was no updating in the original. We used Aquanet. We used so much friggin Aquanet that actors and hairstylists alike were often seen sprinting out of the hair room, low to the ground like they taught you in fire safety class, because the fumes were just too much. I wore John's actual suede wingtips from 1963, and begged him every few days to let me have them, to no avail. We were surrounded by versions of the people we were playing: we could ask Mink what it was like when the Madison swept the scene, we could ask John what getting kicked off the Buddy Dean show felt like. I learned the dance moves that helped get me the part from my stepfather in our kitchen right here, in Baltimore.

My home town. I am the only living member of my family born here. My dad moved away when I was leaving for college. Mom and Jim are still here, although looking to sell the house I spent from 6 to 18 in, which is fine; I have gotten over the roughest patches of my own nostalgia and can move on as they have.
 
Baltimore either grabs you or throws you away. My high school classmates either couldn't friggin wait to get out, or never left. Professionally I couldn't stay, but leaving was unpleasant, and returning is always a joy.

Which is a very very long way of getting to the fact that I cried as we crossed the Mason Dixon into Maryland, and that these past seven or so months trapped in New York represent almost the longest stretch I have ever spent away from home.

My wife is my home. We live in our apartment and it is our home. There are moments acting when three of four pieces lock together and just come out right, and that is a kind of home. And the finish line to a marathon well run is the threshold to a home of self-knowledge and achievement.

But I'm from Baltimore. Me, Frank Zappa, Captain Kangaroo, John Waters, Divine, Joan Jett, Barry Levinson, David Simon--if you don't know that he created Homicide, The Wire, and Treme, then please take your left hand, close it into a fist, and repeatedly hit yourself in the face, because you are a dumbass. 

Baltimore puts out oddballs, oddballs deeply proud of every wart and wonder our town has to offer. 

And I am back. Granted, we came here because next week starts with four days of the new uber-chemo and then the three weeks at home dealing with whatever effects that creates in my system.

We a here because N has three book-related events. She speaks to an American Studies class in College Park tomorrow, then gives a reading there as well, followed by a reading at the Enoch Pratt Library tomorrow night, the library that just unveiled a huge bust of Frank Zappa out front donated by a Lithuanian organization who took Zappa as a prodigal son and anti-establishment mascot for their creeping emergence from behind the Iron Curtain.

See, Baltimore's interesting.

Beyond the readings, I will do a little VO work, but mainly we will sit around, trying to actively to nothing. We will eat crabs--I am allowed now. We will eat hibachi steak--I am allowed now if I'm careful. We will even go sailing on the Chesapeake on Saturday and watch the Ravens hopefully beat the piss out of the Browns on Sunday.

Then we will drive back to New York and see how much methotrexate I can put in my veins without either shutting down my liver or throwing up hospital soup. Everything's a cycle, right? You go, you come back. You leave home, you return. You get chemo, your blood turns into lard, you stop eating, you start eating, you don't relapse, you go home again. Spin the prayer wheel, as it all keeps coming round. Om mani padme ohm.

Oh ,and you run.

I ran! I runned! I have ranned? I rin? Whatever.

Three days ago I went to the safe little tenth of a mile track at the Y and I ran. A mile. It took me ten minutes and fifteen seconds, almost twice what my fastest mile ever is. But that doesn't matter. My feet were rarely more than half an inch off the ground--I would not have passed the credit card test mentioned many moons ago in this blog. But that doesn't matter. I was pursued by the sound of my sneakers shuffling along, and I was passed by an effeminate man with a bleached crew cut and wrist weights who was speed walking with what can only qualify as 'aplomb.' 

And none of that matters. I ran my mile. I was sore the next day, but it was a sore I knew. A sore I have missed. It is extraordinary to go through the pains I have gone through and to miss a pain that is familiar, to actually want to add to your pain because there is a comfort, a coming-home, to a pain you know you made yourself through your effort. Remember Mellencamp? Hurts so good.

Then I ran again this morning, and took thirty five seconds off my time. I will probably find a mile to run outdoors here in the next couple of days, and then I will have to stop for likely quite a while. During the chemo rounds I can still ride the bike on the trainer and I can still swim. Which I will do.

But to run, to run again in at least a semblance of how I used to run and how I will again run when the chemo round has ended. That is a wondrous thing, indeed.

        

Wednesday, September 15, 2010

About....Face!!




Just when you thought it was safe to go back in the chemo...it's, um...it's not.

We checked in with our regular Drs for the first time yesterday since our lovely sojourn in the House of the Oily Blood. And we learned quite a bit.

Of greatest--well, 'interest' isn't really the word, but what else is there?--interest was that, though they did not come flat out and say it, our Drs, away on their vacations, were checking in once or twice a day on me because they thought maybe I would become dead. That's a tricky medical term, I know, but basically they figured, with triglycerides at 8000, I was as likely to stroke out or pop a heart or maybe suffer a significant breakdown in viscosity, and not be there to belch at and praise them when they returned.

So that was eye-opening. We knew it had been a shitty week; that was never in question. But I am not sure that I ever thought about the lights going out.

Needless to say, and I have checked this since, I am not dead, so let's move on.

Because being not-alive was on the menu for a time, the Drs are loathe to put me back on the Peg. There seems to be universal agreement that the Peg, or really any Asparagenase, is to blame for my troubles.

That the troubles came on so fast and got so bad, that scared them--we didn't even go to the hospital for symptoms, we just went because they couldn't get a good reading on my blood (which, as we later learned, was flowing directly from a blown well-head beneath the Deepwater Horizon).

Long story short: I am changing chemo regimens completely. The one I was was on, cutely referred to as the 'pediatric' because of where it started and on whom it works best, was the Asparagenase-heavy one that seemed best suited to my translocated chromosomes and my A.L.L.

But they got 5 Peg doses in me before my veins became pipelines, and so they feel I have gotten a lot of the benefit of that, and moving ahead with it ain't worth the risk.

So we are changing horses mid-stream, as it were, to a regimen known as Hyper CVAD. Hyper mean 'a shitload of' and CVAD is:
Cytoxan
Vincristine
Ara-C
Devil

...anybody else gettin' a little nervous?

There's also a good bit of Methatrexate, but I guess it didn't fit into the cute acronym so you just have to remember it.

So these are all drugs I have seen before, but in, for the most part, heartily larger doses. For instance, when I got Meth in the vein a few weeks ago, it was 100 milligrams per meter squared (the system by which they dose you according to your mass). This time around, I will get 1 Gram per meter squared, or TEN FRIGGIN TIMES the amount I got last time.

This, I am assured, is balanced by the fact that they dose you over a longer period.

And this is where things get the most different. As opposed to the 'come in once a week or once every 11 days and we will hit you in the face with a Gerry-can full of cement, and then you go home again' method we were using up until ow, the new system is actually one similar to what most of the people we saw on the cancer ward and in the chemo centers are doing.

I will be in-patient for four days at the beginning of each cycle. Over the four days I will get an intricate and interwoven series of chemos--about half of the above-listed drugs per four days--and I will be heavily monitored and held up by steroids.

Yep, that's right, it's back on the roids. I think there's more dex than pred, but still, I am already jittery in anticipation of feeling like a terrified-yet-rabid dog again. Good times, good times.

Anyway, after the four days on the pole, they give you a shot of Neulasta, which is a system-propper-upper, and they send you home. At home you feel OK for a couple days, and then you crash hard, and then you start to climb back up. On day 11 you pop back in for a quick Vincristine--you know, like a palate cleanser--and then you are home again for basically a month, until your numbers, smashed to bits by the first 4 days, recover enough to go back in for more.

The next 4-day kick will cover the rest of the drugs you didn't get the first time. So it is a two-month set of two cycles that will cover the full dosages.

Poor sods like I was in April, who just got word of the beast in their bones, tend to get sent off on a lovely 8-month tour of this devilish roundhouse.

Because I have been under the 'pediatric' gun for five months already, I have a bunch of these drugs already checked off on my "have we stabbed him in the earhole with this yet?" list. So over the next couple days the Drs will do some magic math and some human figuring, and they will tell us when we go back in for bloodwork on Monday how many month cycles I have in store. The anticipation is making my fingers tingle...oh, wait, that's the neuropathy. Right.

The good news is that this method is still one intended to cure with chemo and avoid transplant.

The good news is that my last biopsy came back solid, all the way down to 'molecular remission,' (which just sounds so much like an alt-rock band).

The good news is that we made it through Labor Day without getting dead.

The bad news is...well, just reread the above description.

Because of the oil-for-blood scandal and the upcoming boot to the neck treatments, we are being given something of a reprieve. We are taking most of next week in Baltimore, where, after N gives some readings from her book, we are going to relax actively, treating Baltimore like it was the Caribbean...or the Caribbean, hon.

We will eat crabs, N will drink beer. We will hopefully catch an O's game--have you heard? They're good now--and we will sit firmly on our asses and recover, for Monday the 27th starts the war.

Then we will have to re-shuffle our lives for the next however many months. My agency had just gotten kinda used to my availability based on the old sked. N had just sot of figured out her book tour.

We'll make it work. The Transmedia Debut Book Launch at the 92nd Y/TriBeCa will still go forth on Oct 9--be there or be square. I may be sucking a little wind, but I am mainly directing and only performing in the first section, so I'll just dig out the performing-bear-genes that have lain dormant these many months and tough it out.

When Freddy Mercury sang 'The Show Must Go On," he was dying of AIDS. I can hack some low blood counts and nausea. This is N's NY memoir debut. This is what we've worked for for a long time. This is the kind of piece of the future I cling to, work towards, yearn to see pass beneath me on the calendar. It is success, of her work, of our work keeping me alive and moving in the right direction. It is the reason to fight through the pain and the shifting sands of regimens come and gone, of the blood thick like choking mud and the piles of pills every morning. It is the reason for the fight.

"Inside my heart is breaking,
my makeup may be flaking,
but my smile still stays on.
On with the show."

Thursday, September 9, 2010

On The Nature of Trauma

It occurred to me today--and I have to go on instinct because I am not really prepared to go back over these posts much--that I am frequently, and of late almost exclusively, writing during or just after a trauma. This has become a sneak attack blog: nothing, nothing, nothing, BANG! Holy Shit His Blood's Made of LARD!!!! Hide the silver!

I don't mean for it to be like that...OK that's stupid, as I didn't damn well mean to get leukemia either. But you know what I mean.

I got very little sleep last night--just normal sleeplessness, nothing fancy--and so I am hardly in a position to enjoy thinking that this blog has become nothing more than a traffic report for the gnashings and ruptures of my wracked carcass. That would suck.

So I am going to ruminate. Attempt a meditative little moment. They moved us to the east wall of the ward this morning, so the river is sliding by again. That's probably why.

Through the wall behind us there has been racket all day. Earlier I wandered past that door to see if it was a patient or someone I could complain about, as N is working her can off today and it was pretty loud.

Turns out it is an Indian patient celebrating something. The room was packed with family, and as I walked by a woman leaned over one of the same-in-every-room tray tables. But it was buried under gleaming chafing dishes. I could see how good it smelled in there.

There was a little bit of hospital sock I could see on the bed, rolling back and forth at the end of an ankle.

There was a man in a chair facing the sock, ankle, and bed. His ankles were also visible as his legs were crossed at the knees. His shirt was that kind of deep navy blue a shirt can only be for the first couple weeks.

Obviously I am weakened and scared and everything, but the defiance with which this family was filling, stuffing that room with cheer made me feel better.

It has been hours, and there is just a murmur through the wall now. Most have probably left. Maybe just the patient and a parent, talking over something, feast wreckage everywhere, the illusion still held up, but in a thinner screen now. And the smokestacks on Roosevelt are almost too white in the sun to stare directly at.

And it is Rosh Hoshanah, so happy 2836, or whatever.


Hey, watch this: I'm gonna do a party trick:

This is from a 1988 article in a muscle car magazine: "Looking at it historically leads to interesting speculation: is the current Camaro F body the next '57 Chevy? In many respects it might be considered a worthy successor, if hot roddding potential is the primary evidence for determining a suitable successor to the '57 Chevy. Camaro is the obvious choice, it has all, if not more, or the appeal and performance."

I did that cold, off the top of my head. I've only seen that passage once. In 1988.

Well, actually, sung it. Singed?

Anyway, when my friend Henry and I were a band called No Cure, we went through an 'experimenta'l phase. It slotted between our 'shocking punk' phase and our 'just cover Bo Diddley but with distortion' phase, and it lasted about an afternoon.

Our experimental music was to have Henry start playing a riff and I would grab from a mess of written materials on his bed and try to fit the words into the rhythm. In it's own well-fed white kids kind if way, it was actually slightly esoteric. Slightly.

We taped the songs, and listened to them, but never played them again. The other one was from a course catalog; Henry was going to NYU the following year: "Two of the courses, E371601 and E371602 are intended for students preparing to teach in secondary schools."

At that point we started cracking up and kind of lost the thread.

And I will never forget those words. N and I have two anniversaries and alternate each forgetting them with each other, like the Gift of the Magi. I have to make my gym lock a word so I won't forget it. But my friend Ian tells with gusto the story of how I memorized one of the leads of a seventy-minute one act with a song on three hours notice and did well enough that the audience thought then guy who had been there all along was the last-minute sub.

My patient number is 4971748 and I will probably never forget it, but I cannot pin down for certain which day in August of '77 was my brother's last.

Every dog I have ever had knew which part of the cupboard had dog food--your hand goes anywhere else and they don't care.

I'm not even curious about memory, just the mind, and imagery, and what inner diagrams and rivulets are actually lifting our feet and putting them down, stretching our arms to our wives, stepping over dog shit, bumping aside my first address so I can remember every word to the Jean N'Ete After Bath Splash song.

My body is not doing what I want it to. I'm a passenger, and the driver is shit-faced and has his hands crossed. So it is nice to know that the mind does the same kind of hurly-burly sometimes, and we're still here. Still doing OK.

Still here.

Tuesday, September 7, 2010

Eat this, for it is of my body




Let me explain this pic, even though it throws off the time-line.

The two bottles in front are albumin--pretty much egg-whites.
Behind the bottles there is a bag of fat.
That was, moments before, my blood.
Not NEAR my blood, not LINGERING OUTSIDE THE SAME 7-11 as my blood.

It WAS my blood.

This picture was taken about a third of the way through the process,which is known as plasma-pherisis. I filled that bag. Packed it. Bowel rest, my ass.

One of the Drs we have a good relationship with here said to me a little earlier today "no, you're not the type who complains."

I don't like to throw that around. I am a little embarrassed that I'm as proud of it as I am. But it means something to me to not piss and moan. To not snivel. To not cheapen something by using hyperbole in it's description.

...

This is about as hard as it has been. This is hard.

OK, backstory. And I will admit right now that I may twist a lot of dates and times. N keeps it all nice and bound and in place. I am at least OK at the recall sometimes. But from whenever Friday was to whenever now is...that's just kind of like having an iPhone playing a video of someone being beaten, and throwing in into the dryer. Then watching through the little window, crying.

I have still not eaten solid food. This is day 5. I ate nothing for 2 and a half days: NPO is apparently how a Dr says No Soup For You! I prefer the British version, Nil By Mouth, because it has a sort of nihilist truth to it; a dying music.

It was pancreatitis, brought on by Peg Paspargenase, which also caused 'fatty liver'(I swear that's what the medical people were calling it) and hyperlipidity.

Hyper, from the Latin (or Greek: I am totally faking it) for 'lotsa'
Lipid (ibid) for 'fat

Some people, they get worried when their triglycerides get into the hundreds. Five hundred should worry you.

Mine were 8000. Thousand, like with a 'thou.'

And it is Labor Day weekend, so the crews on the floor, while probably perfectly good at their jobs, were not the honed smooth-working repeat healers of the weekly shift and were not, barring the hilarious French-Canadian we really enjoy, people who know me or any of my story.

Which led to things like the "Liver Fellow" telling N and me with great joy that we were very lucky to be at this hospital because the guy who invented the fat-suckin-pherisis-amahoojit practiced here, and he really REALLY thought I should get it done.

OK, dipshit test: who wants to paint your eyes shut, the nice smart guy, or the fuckface who invented eye-paint? You follow me, right?

We, and I am so sorry we had to do this, called one of our team ON VACATION ON THE CAPE and she told us to do it--8000 triglycerides seems impressive even in Wellfleet.

And the chirpy little Liver Fellow, who's a girl, takes WAY too much pleasure in deciding that all the other holes they have put in my body over the past three days--the count is around 6--are insufficient for the great blood-fat-hoovering, so she buries a pherisis harpoon seven inches long up and inside my thigh in a vein big enough to jump double dutch.

Then I lie there for two hours. And, literally, blood exits my body, goes through some chambers, and the pure, white, thick, sickening lard you see above forces greater and greater folds of itself into that bag.

Good times, good times.

I am by now on 'clears,' a shady euphemism for 'he still can't eat shit, but give him that broth we keep in the 'starving cats won't eat this' locker down the hall."

I am plugged into a liter bag of fluid 24/7, and at night, without a fever, I soak sheets, blankets, pillows, and self just sort of..well...exuding.

And I mistreated my wife, just because I was scared and tired and hungry and fed up. I took it out on the kind face contorting in worry right in front of me.

I was flipping out. I had spiked a fever. I think this was Sunday. I was sitting on the edge of the bed trying to use the hand-held-urinal because I was attached to the pole that was plugged to the wall etc etc etc.

And I just popped. Looked up at the TV, pissed myself and my gown, the floor, whatever. I was furious, lost, a terrified weakling.

I got up to go finish pissing in the actual bathroom, but didn't unplug anything. I just stretched all the different wires from walls and tubes from my chest and kind of leaned towards the bowl and arced a hail mary.

N comes rushing over, worry like I have never seen it on her face. Legs akimbo for balance in case I fall. Arms out and palms up in case I fall. I'm doing a furious and pathetic impression of some cherub fountain, and she's got all four limbs dedicated to whether or not I am to dizzy and might fall down.

I finish, whatever the hell that means, and dribble back toward the bed. She asks what's the matter? I bark out "I'm tired of this, that's all. I'm TIRED!"

She pauses for moment, at a loss. She says "I love you."

You know what I say?

"Great!"

Great. Like 'Great, now I gotta fix the sink. Anything else?'

That's what I do. When I am down, when I am weak, when the woman who loves me stands open and uncaring about anything other than whether or not I am ok, what do I do?

I wet myself, and I complain.

It's been a shitty couple of days.


I've cried a lot, partially because I haven't been on ativan or remeron for days, and partially because this stretch of time has, well, sucked.

I am on the better end of it all. My insane fat numbers have come back down to only mildly alarming. They think they have pretty much figured out how to get me back on track--shocker: more bowel rest--and get me back to the glories of good old chemo.

It seems to be improving. But slowly. I have upgraded to miso soup: no tofu.

The fact that I ache, pine for tofu should tell you a lot.

There's a Cymbalta ad about depressed people, and whenever it comes on, I look up at the "depressed" lady complaining about something and I yell "You know what, Lady?! I wanna fuckin' waffle, so suck it!"

So maybe I am not all that out of the woods yet.

But getting there.

There's a pizza place where I'm from in Baltimore: Alonso's. They don't do it any more, but they used to make their pizza a little different: they'd put the sausage and pepperoni and stuff down first, and then fully hide it in a cheese layer. And then they'd sprinkle a little bit of oregano and spices on top, so the white of the cheese was flecked.

Since maybe 2pm today, every time I close my eyes. Every time. I see an extreme close-up of that landscape of pizza, that glorious expanse of pizza.

That I cannot have. It is now mainly the hunger that is trapping me. Holding me down.

Hunger. Weakness. Low points a-flyin'.

But hey, how many people can bleed Flan, right?

Saturday, September 4, 2010

Hello Darkness my old Friend...Back to the Front--S+G...Metallica




I'm gonna keep this short. Thursday morning I went to the blood draw place, Quest, to make sure my numbers were ok between the 11 days, especially as we thought I seemed a little anemic.

Quest's results were not top of the line. They said. That there. Was too much FAT in my blood to get clean readings.

By time we get this info Quest is, voilĂ , closed.

So we just hied ourselves up to the CityState, and got the same tests again, and...
[do you want to be Lo or Behold?]

There was too much fat in my blood to get good readings for a lot of what they would like to know.

One Dr saunters by and says "heh, you know your blood isn't supposed to look like milk!"

Ha ha, fuck you very much for the insight.

I lie on my back for a while in an exam room. N watches me. This part's pretty de rigeur.

Then one of the main Drs connects the somewhat universal shittitude of Peg Aspargase to lard-blood-osis or whatever I have, and all of sudden not only do I probably have pancreatitis, but they are admitting me. Which means admitting us.

Yay?

I ate a granola bar at 11am Friday. It is 3pm Saturday. Slide last night into the not fun category.

Then slide it in further. Drive it in with a hammer. A big, rusty hammer with splinters in the shaft.

Pacreatitis is simply inflammation of the pancreas, which works with the liver and gallbladder to create fats and bile and enzymes that get dumped onto your food as it starts that long and bumpy road towards poop. The main symptomic evidence of pancreatitis is, how should I say? Excruciating pain. Pain like someone is holding a blowtorch to your navel, then swinging it back and forth across your belly. Slowly. All night.

Because of Peg A, the bitch, my pancreas is just plain beat to hell.

But wait, there is a fantastic and highly modern way to cure this disease.

Wait for it...

Bowel rest.

Seriously. Bowel rest. Sounds like a death-metal band.

What this means for me is that every three hours or so all night I will be visited by the ghost of 'there are three blowfish on PCP fighting over a Gameboy Wii in your stomach.

You know that whole 'how much does it hurt, one to ten?" thing? I very honestly opened with 2. I found 6 without a map. Eight was actually polite enough to introduce itself, and 9, well, I don't really wanna talk about 9.

...except to say that he came with a half cup of the finest House Bile, and as piece de resistance, a bunch of bile snot got backed up in my oxygen tube.

Did I mention I was on oxygen?
And that I haven't eaten?
And that a surgical fellow in a snappy skiing fleece stuck a q-tip up my ass?

Anyway, not the shortest night. Especially for for N, who spent a lot of the evening and today tracking down the dilauded I so badly need .5 of when the stomach pains start.

We learned very recently that, on a two-day fast, it is best not to just push the dilauded syringe home all once-- that's a free pass to hearty throatfuls of bile filling the pink plastic bucket; which, oddly enough, they are more than happy to let you keep.

A new Dr just visited with the peachy keen suggestion that maybe I am going to have a form of dialysis to strip the fat out of my blood. Neat!

We have not slackened one bit in terms of fighting and doing what needs doing, we just have a lot more to ponder as the post-hurricanic afternoon sweats over the east side. Now I am gonna have an ice chip.