It is 5:09am. I am up, plowing through the remains of the chicken and rice my mother and stepfather brought up last night, eating as if maybe they'll stop letting me later today.
I am partially awake because members of my running team, BPTC, are already half way through a 180 miles relay race from Woodstock NY to the city.
http://www.ragnarrelay.com/newyork/index.php
A race I was slated to run. A race I would kill to be suffering through right now, shattered, exhausted, sweaty--pretty much the same as I feel here a lot, but without the cancer. I miss the team, and the effort, and the joy of overcoming. And I wish them well.
My stomache is solid, I have taken no anti-nausea pill, my hair feels pretty much still attached into all its little holes, and my body isn't droopy and grey like a squirrel, dead on a rain-slicked road.
I have felt this before, and thought of it as Rock Star Hour--hence the photo from a transmedia concert tour of Serbia a couple of years ago when I was about as vital as I have been. Believe me, that picture is not from right now. Though I have the Slayer shirt, if not the soccer Hooligan scarf--that was a loaner.
My wonderful 71 year-old Italian neighbor figured Rock Star Hour out ages ago. By 5:30 he is usually rummaging (which is a word you do not truly appreciate until you can only hear it happening through a curtain; it is exactly the right word) through his fridge, finding some sort of pre-breakfast or extremely late dinner. He's known these precious minutes and I have not; I have lain through them, hoping maybe to fall asleep again, and usualy failing.
And, as always, the sense of well-being carries the ever-present commensurate terror. Feeling OK just isn't right in here. It's off, like you're breaking a rule, or you forgot to take something.
It is, in fact, the distance from the pills that does it. I firmly believe that the pile of prophylaxis I take in the morning has as much to do with making me feel off as the chemo or the sickness. It is part of the treatment and therefore accepted, hands down, but it is there. And the pred at 2:30 is nothing more or less than an acrid mouthful of jittery uncertainty and grainy skin-layering that pisses away whole layers of the second half of the day. So, I think, a little Ambien curtain, and the greatest distance of time from the 8am feeding of pills, and you get the Rock Star Hour.
But the terror lingers. In the wonderful JOURNEY TO IXTLAN (which is either a fake book about a real shaman or a real book about a fake shaman; I can never remember) Carlos Castaneda's spiritual guide identifies this space--I think it is off behind you and slightly to your left--where your death lingers. I think that in the book the author or shaman try to whip around around real quick every once in a while to catch a glimpse, but the whole point is that it is there, where it can keep an eye on you, but out of reach.
Or the Bowie lyric:
My death waits like a beggar blind
Who sees the world, through an unlit mind
...Let's not think about
The passing time.
For whatever lies behind the door,
There is nothing much to do.
Angel or devil, I don't care.
For in front of that door, there is
You.
And I am not looking to be maudlin--this morning I do not fear death per se, as the light rises over my sleeping wife and the vaulted windows of the old hospital wing that is our view now. Sure; I am scared to die, more aware of dying and scared to die that I have ever been for more than an instant in as long as I can remember.
But that is relegated, back in the piles of paperwork and the possibilities of marrow transplants to come, or not, and trickles of my sanctuary disease into the spinal column, or not, or getting released from NY Hospital so I can get beaned by a falling tower crane, that newest NY tourist attraction. Or not. Left foot, right foot: repeat.
So it isn't death right off my shoulder, it is just the certainty that, in a few hours, a few pills down the line--even while getting sicker enough to get better--this Rock Star feeling, this normalcy that is so far from my normal that I now sense it as an invincibility, will fade, as the light grows.
The chicken and rice is gone, and I am full for however long that will last. I weigh twenty pounds less than when I got here--5 foot 10 and 145 at last count--or at least did yesterday; there's about a pound a day loss unless I really pack it on. The pred, the pred, and Vinchristine, too.
I caught an unbidden look at my thighs yesterday: right now I think a hungry coon in an alley would step displeasedly over me to see if there were any dried flakes stuck inside a Fancy Feast tin; that's the kind of meat I have to offer these days.
The chicken and rice makes me smile, as it is a source of family comedy. One of the foods my mother can make with her eyes closed that inhabits that 'mom' space in a child's gullet--just always good and filling and makes you know you are loved.
But I was raised in a house with a basement freezer by a woman who was raised out west. We cook a lot and then pack it, and my childhood was defined by running my thumbnail across the frosty strip of masking tape as I ascended the stairs to see how old a dish was before we brought it out. And the carbon-dating was mainly for informational purposes:
"This stroganoff says 9/97." Can that be true?"
"Yeah, that's when the Seilers brought lamb so we didn't need it. They had been cooking all day. Remember? I'm sure its fine."
And it always was. I can safely say that, off all the things I have thought about that might have given me leukemia, frozen homemade food aint on the list. Eating love can't hurt you, no matter what.
N, on the other hand...not so much. Not a big 'cut-around-that-lovely-mold-bloom-and-hand-me-the-rest-of-the-cheese' type of girl. Not so much the 'I was wearing completely different fashion when this was originally heated but I'll eat it anyway' kind of lass.
Her mom has a chocolate cake that makes N happy and calm. Her dad does some soups and elegant Indian dishes that do the same. But they get eaten, and the plates are usually lifted out from under me and cleaned before I have finished sucking tasty detritus off my fingers...then wiping them on my jeans.
So out of respect for, mainly, my wife, and, secondarily the medical establishment: this chicken and rice still wore the the masking tape, but in a bolder, firmer, more confident pen stroke: "Chicken and Rice. 5/10"
Take that. Delicious. Gone. Here comes Saturday.
