Chemo: "it provokes the desire, but it takes away the performance."
-Porter, Macbeth II, iii [though he was talking about wine. Same thing.]
It is quarter of 7 on Saturday the 6th of November. Zenyatta is about to be walked into her starting gate in Louisville before the Breeder's Classic, hopefully to beat the field and retire with the astounding race record of 20-0.
The least I could do is a post, after so long away, right?
Anybody tells you cancer is boring, go ahead and stab them in the neck with a fork. I don't want to reminisce yet because I somehow feel it is as bad as looking too far forward. But the only certainty so far has been change...and I guess pain. And terror. And loss. OK, lots of stuff, but you get the idea.
Zenyatta, a full 15 horse lengths back on the back stretch, put together the kind of final run that would have been remembered forever. If it had worked. But she lost by a nose. 19-1 is somehow a shitload worse than 20-0. Out to pasture either way, to be mounted again and again so silly men can live through horses, instead of going out and doing something themselves. I'll stick to chemathlons, I think.
This last stint was, to search for silver linings, the last time I will get a new experience--unless, of course, something happens. This was part A of the Hyper CVAD, and they swapped me around so that Part B was first. But now I have had all of the different drug and time-interval combinations they intend to hit me with, so moving forward should be better than the last couple months. 4 straight days of Cytoxan, then a happy gush of Devil, some Vincristine to send you off and some more at the end of the week just for shits and giggles.
And it sucked. I mentioned before about all the tweaking factors in the hospital, from new nurses to the multilingual chatter from across the curtain. But I don't think I knew how far it was digging into me until we got home. The first night home was horrible, just kind of an hours-long anxiety attack. I think I slept some, but it was the kind of sleep that is really just philo-dough layers of tension, never really a loss of consciousness. Certainly not rest. I had these dreams about different images in my head that felt--during the dreams and waking recollections of the dreams--like they were age-old. It seemed like a host of images that had been bothersome and scary to me over years and years were squeezing together into a ball, a roiling dream scene that repeated every time I was asleep enough to give in. And they were weird image sets:
1-Arnold Schwarzenegger, young and hale, in khakis and a backpack, scaling and leaping a twisted relic of a railroad bridge that has collapsed and was somehow hanging off Half-Dome in Yosemite, thousands of feet above the scarred rubble of mountain below: like the ends of the rail bridge after the great explosion in Chaplin's "The General" and the last splintered wood over the River Kwai, but teetering along the sheer grey granite.
2--As the tattered wood gets more and more normalized--like it is growing backwards through time--it becomes a huge and sturdy staircase made entirely out of railroad ties. And the railroad tie staircase leads down onto the Boardwalk at Ocean City, Maryland. My viewpoint has gone from the terror of hanging off the edge of the mountain to crushed in the throng on the boardwalk, and the tram is coming by--the false trams of boardwalks, with their rubber tires and fake trolley horns. The tram comes closer and closer like a python or a cow in a packed pen, and I am crushed up against a shop window, my pelvis shoved against the cinder block wall beneath the show window to the point of cracking, my stomach sucked in to try and be as small as I can.
3--As I turn and look in the shop window, thinking maybe I am about to be shoved through the plate glass, I am overcome with the image of the store in front of me. It is a shop that only sells second-hand items from my stepfather's home-town of Lawrence, Long Island. And everything is 37 cents. There is a lighthouse style light that sweeps across the huge window of the '37 cent emporium,' illuminating knick knacks in a blinding array every second, every two seconds.
3A--All the knick knacks turn into that very specific kind of white glass housewares, as often as not a lamp. The translucent milky white glass, often with with nibs all over it, that make the bulging bodies of lamps and oddly un-useful looking tea sets.
It doesn't seem scary now, typing it. But every second of it carried the weight of the inescapable. Every image was exactly as it had been the last time. I knew what was coming, I knew I could not get away.
Then I would open my eyes, and our room would be too big, and my heart would feel like a pill, far too small to be of any use.
When I had anxiety attacks as a child, they were most often accompanied by this sense of broken perception: my hand would seem huge and terribly far away at the ends of my arms, so that the children's aspirin my mother would put in my hand seemed so small, so distant, and it was just a symbol of how useless they were, how far gone I was.
I used to think that I was half-awake. That was the problem. I would cry to my mother that I wanted to wake up. I would tell her that I needed to just bury my face in my pillow and scream; maybe that would wake me up.
Then I would. Just smash my face into the pillow and scream. And I was young enough that it was that most awful of screams, the scream of a child. High, cracking, wavering, hopeless.
I look back at that; I see my mother sitting on the edge of my bed, hand on my back for comfort unless I yelled that it was too big, too heavy, like a rock, something in my broken perception. And I feel so bad that I made her endure the screaming as well. Brought it outside my crinkling mind, into the room.
I don't remember if it ever woke me up. If it ever worked.
And all that was back. All those senses of helplessness, or being trapped. I would open my eyes and the depth would be gone. I would open my eyes again into another layer of chattering, splintered sleep, and maybe the light through the windows would make me feel a bit better, a bit like maybe I was actually awake this time, or at least closer.
And then I would realize that I hadn't moved. That I was rock-still, straining every muscle to not strain a muscle, holding as still as a mushroom, because movement couldn't be good, couldn't help, could only make it worse, could plunge me back into the images or tear me up through the layers too fast, and leave me lost somewhere.
N would move, and that humanity--the normalness of an arm next to mine in the half light--would be some comfort. Would maybe allow me to move, stretch a hand off the bed, take a sip of water.
Because I am supposed to be drinking. There is a fat batch of bladder-bleed-inducing Cytoxan very fresh in my fluids, and the more I pee the better I am in terms of not risking shredding the lining of my system. I should be guzzling every time I am awake, peeing as many as five times in the night.
But Schwarzenegger, and the railroad ties, the tram, and the flashing lights on bulbous white glass, '37 cent emporium! 37 cent emporium! have kept me in bed, not asleep, not awake, not really anything.
When I do get up, very near full morning, and pee, it is a trickle the color of a split-lip boxer's drool.
So that is night one. Not so restful. Not the best way to leap off towards a week of recovery.
And it kind of goes like that all week. They think maybe I had a mild infection in my bowel so that I was making bent-double trips to the can about every hour and fifteen minutes. I was for some reason stubborn about taking Immodium, tending not to get to it until late in the day, so I stayed undernourished and dehydrated for most of the week. My own damn fault, but no less a setback.
N had a teaching trip to a Catholic University in Allentown, where she would read about her mom calling the Pope an asshole and how her parents told her to go read all the holy books and decide for herself--she ended up pledging allegiance to story, which trumps everything by including it all.
She was a little worried she'd get lynched, so we sent her on her way with a predominantly lunatic Iranian/Irish classmate of ours from Skidmore, who could always draw attention from the mob by yelling 'Allah Ou Akbar!' or offering to buy the women in exchange for three pounds of exquisite figs.
Her trip went very well, she was well received and the students--if confused as to how she spent her Sundays out from under the aegis of the Anointed One--were respectful, interested, and, as most youth can be if you let them, open.
That meant that Mom came up mid-week to babysit. We had as nice a time as a flat-out son and worried but capable mom can have, and in some unknowable way I feel like we, in the quiet, grew even a little closer, just suffering and watching and getting through. Never far apart, something about the quiet of the day and a half allowed for a tightening of an orbit. Maybe I just wanted it to be so because I still felt bad about making her hear me scream. But that's what parenting must be, isn't it: being willing to live a life where you will hear them scream, and, as she has done whenever asked, just try and make it better.
But the week was kind of a wash. Because of the bowel infection I wasn't gaining any strength or weight. Because of the high dose--40mgs a day for five days--of a new and even more potent steroid--dexamethesaone--I wasn't getting much from all I was eating except tickets to the can. Nothing got worse, but nothing got better. In sailing, it's called the doldrums--glassy water, flaccid sailcloth, vigor seeping into the sun-baked teak.
Thursday night I pulled it together to chair the New York membership meeting of AFTRA, and that 'performance' and the inevitably strong feelings one gets from interacting with the membership helped kind of pop me out of the worst of the flats. There are always a few utter crackpots who seem like maybe they only get out of the house to come to this meeting, and that's as much of the fun as anything. There is usually at least one confrontational event--often near the end when everyone is getting a little wall-eyed anyway. And then there are the moments that propel you to do more work for free, back-breaking slogs through the ins and outs of human and union politics, policy, the shifting sands of technology, the ever-vigilant employer groups who may love what you do and appreciate your input to their profit-margins, but who are still dyed in the wool to keep every cent and droplet of pride away from you and the plying of your craft unless forced to relinquish under duress. Who am I kidding: I love it and it is a blast. An exhausting, cyclical, nerve-tearing, human, blast.
And being 'on' to give my speech at the front and chair the meeting seemed to work. Guzzling Gatorade to fend off the recently discovered potassium shortage, and standing and sitting and standing and sitting between each report or award. I made it through fine. The highlight had to be when 'Maria' from Sesame Street shook my hand and told me I was doing a great job as president: she hasn't aged a day since I first heard her oddly deep tones and crisp Bronx accent teaching me how to say words and numbers as a mindless wad of skin and nerves on a shag carpet in front of a Trinitron in Baltimore in the early seventies.
I was amped when I got home from all of it, but when the crash came it came hard, and getting up early to hit the Drs again for the Friday bloodwork was tough. N and I got out about half an hour later than usual. The regular blood-yanker--getting good and pregnant now as one of the few markers of the great time that has passed since this all started--was out, so we had to shuttle back and forth from the chemo Barca-lounger to get blood drawn and then see the Drs. Things seemed to be slowly getting better, the bowel infection possibility was identified--my gut obligingly rumbling some high-decibel Bourbourigni as soon as the Drs got into the exam room--and the next week planned. Then it was back to the lounger for a bag of platelets, two bags of blood, a lovely final dash of Vincristine, the start of yet another mutli-day run of 40mgs of dex, and we were home by a comfortable 6pm.
So today was all down and easy. Got errands out of the way, ate and ate and ate, and have watched lots of TV: GlobeTrekker ate her way through Scandinavia, Formula One qualification for the 2nd to last race of the season in Brazil, some native loggers struggling to get 100,000 cords off some acreage in the cold north, and NASCAR Nationwide racing at Texas motor Speedway. Soon N will join me for BBC's updated Sherlock Holmes, starring the Office's Martin Freeman as Dr. Watson before he heads to New Zealand for two years to play Bilbo Baggins.
Tomorrow is the NY Marathon. I ran it in '07 and '08, and ran half to pace teammates last year. It will be hard this year. Missing Baltimore a few weeks ago hurt less because it was so far away. But I will be able to feel the thrum of the race most of the first half of the day. The news has covered all the support races, my email is alive with teammates planning where they will stand and support those from our group--a solid and talented crew--running this year.
But I am probably not up for the travel, the hassle, the breath of all those people: my white count yesterday was .7 so I am back on the antibiotics until further notice.
I am feeling better but feeling worse, if that makes sense. I have a busy week coming, which is good, and I think I will throw down another chemathalon Tuesday to get back up to treading water, in a way.
At the end of the week N goes to Louisville, where an hour ago Zenyatta didn't live up to her hype. I do not have that concern for N. She will teach there for ten days or so, and I will go to Baltimore to be watched over for the week. The increase in planning and activity should finish the job that feeling better today has done to drag me out of the dumps.
This coming Sunday I have the 5K to support Jim and try to eradicate Multiple Myeloma. I still want to run it, if slowly, from start to finish. We'll see. Realism is king, but goals are goals.
I feel like I am pissing and moaning, and so I will end with a sadness that should shut me the fuck up.
Shannon Tavarez, 11 years old, starred in the Lion King on Broadway. She'd wanted to be on stage as far back as she could remember, and she'd made it to one of the most successful shows on Broadway.
Then she got Leukemia. She needed marrow, and people of color are horribly under-represented in the marrow registries.
Shannon died Friday. Dead. Cancer.
Ad I'm watching NASCAR and thawing out chicken and rice. Explain to me what I have to complain about again? Who exactly the fuck do I think I am? Oh boo-hoo, I got the runs and need some stranger's red blood cells to get up the stairs without getting winded.
Really? Really!?
Deep breath in, look up and out at the world. Quit yer goddamn whining.
Shut up. Left foot. Right foot. Repeat.
