This photo was a couple weeks ago, in Baltimore. I have known the guy with the swordfish growing out of his head (could be a Marlin, I dunno) for 40 years or so. N took the photo, and Mom and Jim are off camera left. The pile of ex-crab in front of me is mine. I didn't make a huge dent in the population, and a couple weren't quite up to snuff so I left the bodies for compost, but I think I did four, maybe five, plus some extra claws. Even describing the transplant process to sworfish-head, I wasn't really weighed down by leukemia or the wait for transplant to happen.
Earlier that day I drove to Pepe's, which has not had a guy working there you might call Pepe for at least three decades (passing through Greek and a little Asian ownership/staff, and now resting, pretty firmly I think, in South Asia). Pepe's makes the best or second-best (depending on my mood) cheesesteak on earth. Philly people can kiss my ass. Go to Pepe's: you'll shut yourself up. While eating my chessesteakeverythingnohots (very difficult to separate, as I've been ordering it that way forever) earlier in the day, feeling pretty beaten and fatigued and worried my numbers weren't coming back fast enopugh, I still wasn't too weighted by the worry and the scheduling boogiemen of transplant.
N attended the retirement party of one of her professors from her PhD, program, a mentor with an enormous heart and astonishing capacity for ignorance of his own hairstyle. While I knew she was down there in College Park feting one of the people who found a lightning bolt in her thirst for information and wrapped it around his experience so she found a home, I wasn't really too down because of transplant
Good stuff. But impermanent, like that early moment when a fart smells kinda OK. Fleeting.
Most of the time these past months, and especially these past weeks, I have been bending under the weight of the two-pronged attack of transplant worry and general feel-like-shit-itude.
The feeling bad comes from the "Augmented" portion of these two chemo hits they gave me to get me back into remission. N and I have come to the conclusion that we're not huge fans of Augmentation. For the first round it brought on the brain-snap because of the major increase in Ara-C. This time is created the lovely pattern of returning to clinic for two more Mondays in a row of chemo to the Ommaya, a nice little pop of Vincristine, and the lovely newcomer Rituximab. N has looked it up and Rituxan (it's cute diminutive nickname) apparently has a side-effect list longer than the NRA's 'accepted lies for the public' talking points.
So I got my chemo hit, HYPER C-VAD cycle A, and then I get to have these three party chemos bashing me back down just as my numbers are thinking of coming up. Goddamn groundhog day in my blood, with a skosh of Whack-a-mole thrown in. This past weekend I was running a 102 fever on and off for 48 hours.
When we got the match we were elated and we started talking about process and genetic extra therapy and travel plans and housing issues in Houston, and then everything kinda froze. We have schedules we've been given that the Drs down there would like, but everything waits on the donor. It isn't the donor's fault, there are just strict protocols about when they are finally allowed to reach out to the donor to schedule, and then the National Marrow Registry has to do the outreach to protect privacy and the chain of command or whatever, then the donor has to agree to either the dates offered/asked by the cancer center, or figure out other dates that work, etc etc etc.
And it's like watching paint dry, except this paint is 'Maybe-Dry' brand and so you can't be sure if it ever will. The watched pot, blah blah blah. Except with getting a match I am hard pressed to do anything but watch the pot. And I feel beat down and tired and like crap. And I am having some dealings with my union that are re-building my belief that most people on earth are fucking stupid.
'More weight!'
Except the religious fruitcake who said that was saying 'Lay it on me. I can take it, you annoying bastards. Lay it on me.'
And that was brave.
And, also, it killed him. So that allegory can maybe kiss my ass.
I'm self-pitying, I'm not eating enough because of either fever blisters or drugs to help combat the fevers that gave me the blisters making me hate even thinking about food, so I'm dropping weight when I should be gaining. Some of my union colleagues are having a rousing competition of Who Can Stuff Their Head Further Up Their Own Ass? I did an audiobook that a kind producer-friend worked out for me, but just in time to have a mouth full of sores, so I Orajel-ed my way through a day and had to add time to finish, which was demoralizing.
Basically, everything's a bummer and I am letting it get to me and the fact that I am letting it get to me pisses me off: letting myself and others down, etc blah blah.
So it was very nice today to get a phone call from Houston with a date. Good goddamn!
They have made donor contact and they will transplant me mid-June in Houston. This means that they want us down there at the end of May because there are around two weeks of pre-stuff, from administrative signing of consent ("I hereby swear that if I grow worms out my fingertips and my eyes turn into blood I won't hold anyone reponsible...") I will start pretty quickly with a week or more of radiation. The last couple days will be radiation and then a drip of Ectopicide, which is a badass enough chemo that a single drip delivery finishes the job the radiation has been helping with of killing off ALL my marrow. They want my bones so hollow I could yank one out and do a fife solo. I'll briefly be avian, so don't lemme near any ledges or branches, 'cause you know I'll give it a shot and just fall the hell down.
So we're happy and terrified and prepping and not ready and happy and terrified and planning and happy and I'm pretty sure I can't separate my anticipation from any of the other emotional states just yet. But I don't think I am bowing under the weight of the wait any more. And the fever and attendant mouth sores are gone and I'm eating right and pretty well and hope to get above 150 again--hit 147 at the bottom of the arc this time.
But it is something to do. I have always been better with adversity and pain and slogging through tough times than I have been with sitting on my hands on the buses of life, and Bowie said. Uncertainty and 'hold tight till something outside your control happens' don't sit well with me. That stuff termites into the crossbeams of my brain and psyche. I worry something might eventually give way.
But it hasn't so far, and when it starts to really chafe my inner peace (currently often reached through "Judas Rising" off Priest's Angel of Retribution) something tends to come along and improve the scene. It's a non-subtle life lesson to Just Hold The Hell On. Don't let it win. Don't get so low you can't keep treading water for yourself. Don't.
There's another stage, another side to come out, another battle.
Gotta go to bed; get ready for getting ready for the next battle. I lingered too long in the chambers of the sea. Now I gotta figure out which heavy metal t-shirts I'm gonna pack. Ain't life grand?
