The second day In the hsopital is passing and so far things are going along OK. Of course, typing that will jinx me and a large section of wall is, I am sure, preparing to cave in on me at any moment.
This is our first return to a room we've been in before. In fact, this room was probably our longest stay. It was the quiet corner to which we escaped from Stefan after the marathon sixteen days In his addled presence. We met the lovely older couple here with whom we still trade notes in the clinic waiting room. Deeply Italian, they were the ones who were so tickled that the wife actually ate some of the macaroni on offer at the hospital. "I ate the macaroni!" she would cry out, and then giggle. She called her whole family and a few neighbors..."I ate the macaroni ( tee hee!) A very sweet woman. She'd ask how we were doing, and if we said 'ok' she would answer 'tangkgod' and she would mean it. Really mean it, but in an internal way; not pushing something on us, not dropping into some impromptu prayer session. She was just a kind woman and a believer, and her belief could not separate itself out from her kindness. I am usually hair-trigger to any of that ghost story religion mumbo jumbo, but she never offended me, never made me feel like her good wishes were an impositional demand that I follow her one and true god. It is rare when the kindness trumps the belief, and it made interaction with them--something we did for the final two weeks in the hospital during the brutal and crazed days of induction--very nice.
Our current neighbor is a sweet older gentleman who has lung Cancer along with whatever blood/bone issues brought him to this floor. He is extremely polite, listens to his tv as quietly as his aging ears allow, and snores in a prolonged and very bass mumble of English and Spanish. Because it is not staccato and high pitched and ever-present like my last creole curtain-sharer, I have found it easier to let his rumblings and crunchy inhales and bursts of somnambulant info-sharing go by the wayside, and so the needles of distraction, that were by this time in the last stint sliding hot and slow into the center of my cortex, are not really a problem.
He recounted a nightmare to his nurse this morning: in the dead of night, unable to sleep, he saw his mother, dead twenty years, walk across the room and wash her hands. She calmly asked him how he was, and then she walked away.
...that was me. I was just washing out a water bottle at the communal sink in the middle of the night. I think I may have said something to him. Maybe not. Actor's life aside, playing that role unbeknownst to myself turned out to give me a lively set of the heebies when I heard about it through the curtain. Though he seemed at least mildly comforted to have her there, so If I helped his rough night in any way, I am glad to have been of service.
I came into this round physically strong and mentally a little worse for wear. As I have said, the fear that this stint would be as soul-scratchy as the last, a long a drive down a badly-paved spiral road with crappy brakes and only republican talk radio to listen to, was growing day by day as the entry day drew near.
But my body was pretty solid. Fat, but solid. I weigh more right now than I ever have. Some of that is the change from muscle, which weighs more, to fat, which weighs less. So I was stronger and lighter, which meant I was in great shape. So not only am I heavier than ever, but less of that weight is something of which I can be proud.
Partially it is the steroid eating habits that I hold onto after the steroids have stopped making everything I eat disappear so quickly. When I am on the pred or the decadron, I manically eat and it manically disappears, but that only lasts a few days after each stint, and I just get unto the ultimate-meal groove and keep packing it on when don't need to.
I have shirts that ride my belly now, shirts with buttons that have peeper holes where they never used to between buttons.
It disgusts me. I was a wrestler and now I am an actor--some level of eating disorder, mild though it may be, is never far from the fore. I eat to feel good, my moods visibly lifted by movie popcorn and steak. I run as far and as hard as I do partially because it makes sense to my body and creates accomplishments that arrange and align the work for me in ways that strike me as deeply worth knowing and inhabiting. But I also run far and hard so that when I get back I can dive face-first into gravy fires, Baskin-Robbins sundaes, and bags of Utz potato chips bigger than my midriff.
It is a balancing act, and I can go months and months balancing correctly. But there are always pitfalls: two good movies in a row, three boring days alleviated by chips and salsa instead of books and running.
Oh yeah, and cancer. Weeks of hurling or wanting to hurl, finding single foodstuffs palatable for days on end and then discarding that love for something else on the spin of a twirling penny's shadow. Hospital food growing deeper and deeper into my psyche as a representative of all the pain and uncertainty until I find myself here this time barely able to eat anything, which of course puts more pressure on N to go outside and find something I might be able to force down.
And so you eat more than you probably should the last week before a stint because the assumption is there that you will not eat near enough inside while they poison you.
But that is as easy to abuse as anything else when you are someone who is made happy by food, and so you arrive at the hospital with the prerequisite extra bulge through the treatment, but with a lovely non-requisite layer of insulation over the first layer, and not a toned muscle to be found anywhere.
The chemathlons helped, and I will try and returnm to them more quickly than I did last time. The effort put out also makes you trend toward healthier snacks after,and creates a sense of accomplishment against the disease, the cure, and the softening of your whole body that tends to keep you away from the worst offenses of bingeing when you have the time to do so.
But there are also moments when physically fit people around you help bring you back to earth.
I run for BPTC--it stands for something but the name is pretty embarrassing so I tend to stick with the acronym. I stay less annoyed that way.
Since starting running in earnest in 2007, I have run the Knickerbocker 60k three times. It tends to fall right after the NY Marathon, and it's dumb American distance is 37.2 miles. So you have the somewhat rare opportunity to run a marathon, look down at your watch, and say 'ok, I've run a marathon, now I only have ten or eleven miles to go' or run 18 miles and think 'here comes halfway.'
It is a wonderful race, and it takes the kind of planning that most other races do not: you plan for food intake, liquid intake, shoe comfort, and a mindset about pacing that encompasses multiple, multiple shifts in thinking, speed, dedication, idiocy, and drive to cross the line in any kind of acceptable time.
The rather obvious chemo parallels here are not lost on me, believe me: many a session buried under a blanket of fear in my head have been salvaged by thinking about the endurance runs I have suffered through and come out of on top.
Or, looked at another way, running the Knick about a week after running the NYMarathon is just friggin stupid. I won't really argue that point much either, as it has a lot of merit.
Long story mildly shorter, I could not run the NY Marathon or the Knick this year. Three brave souls took it upon themselves to run the Knick alone, to finish the whole race for the first time--each and every year pals and teammates come out to run a loop or two loops of the park with competitors, but the whole thing is another enchilada.
And a group of BPTC runners signed up and ran the race as a relay in my honor because I could not this year. Humbling, moving, and an acceptably annoying reminder that I am as yet not ready.
But the schedule worked out and I was back up from Baltimore and had the joy of standing on a slight hill at one of the turns--it is an easy race to spectate because after an out-and-back to the corner on which we stood, the runners then complete nine (yes nine, like a guy missing a thumb) circuits of the inner, hilly loop of the central park road. So everybody comes by a bunch of times. It gets a little squirelly keeping track of who is on what lap, but you see them all, and they see you.
Members of our team who were walking over to join the cheering section got shouted thank-yous from runners because we were all in our gear and we were cheeing for everyone. It makes a difference in an endurance event to have a corner you know will be loud, a reason to pick it up, something to look forward to.
And I was there all day. A few of us did the whole race, from Chad's solo finsih as first for our team, through Rina's strong second accompanied closely by the last set of relayers, to Vanessa's stealth personal triumph--she kept her intention totally secret, really planning and running just for herself; a race like this is a great kind of mission for that type of self-discovery. With prep and group meeting we spent around eight hours on course, handing out water and Gatorade and gu and pretzels to our runners and a few others who looked like they needed it. We have ample time to nickname the runners begging to be tagged: 'man-boobs' and 'natural sweater' were always within a mile of each other, 'perma-smile' never wavered with her pearly whites all the way to the the end. 'Whoo-hoo hand slap' got a lot more quiet and a lot less violent with his high fives as the miles ticked over. 'Tractor trailer' never figured out how to take our turn without swinging way way wide, and still almost crossed the white line when he got onto the straight. We made a cast of characters, and the clapped and hooted and willed them across the line.
Unbeknownst to me BPTC raised 1400 bucks in their efforts, donating 600 immediately to New York Road Runners Youth Running initiatives, which is the group behind the TFK team from which BPTC was born. Then they want me to decide where to put the other 800, and, in speaking with the other Charity Whores (an official team board position shared by three of us) I will happily make a choice.
The few left at day's end hit a nearby diner and didn't mind the carbs. We talked for a while, and then hobbled off in different directions, some of us sharing subways until we peeled off at our respective stops and went home, chilled but warmed by the event, the accomplishment, the camaraderie, and having done something on a cold Saturday morning much better than sitting in a couch alone eating Bon bons, or having chemo tingles run up and down your body.
And now I am back in the joint, rattlesnakes humming away with Cytarabine and Bicarb and Methatrexate. My hemoglobin count is hovering at the 'do we give him a bag of blood?' level, but so far nobody else has needed to give me a pint of their finest. This is the Hyper CVAD stint where I have to sign my name before and after each chemo that might creep into my brain and, aside from a consistent desire to sign different names and flail and drool when they give me the pen and paper, all seems to be going well.
Returning home to the false high of the Neulasta and the cliff-drop of my numbers will, as always, be an extremely unpleasant experience. But N being home and the level of care and preparation on the part of the day nurse has put us much more at ease than the last time, and so I think that I will exit the city-state this time with my head higher, and my shoulders only bowed because I will have enough strength left to carry N's cot as well as at least one of the backpacks. And that initial feeling of being useful, being more than just the invalid, will hopefully get me through the next week with that much more oomph, that much more pop. That much more me.
