And the shiny stuff is Vitamin E oil to help with scarring, not bad hygiene.
There will be a post soon to fill in holes between "Hey, I'm totally fine!" and...now. There will be a post soon about the shore birds of the CityState and the nightmares they fend off. But first, some housekeeping:
We are back from Houston after four days at MD Anderson Cancer Center. I got another marrow there, met many great doctors, and got tested like an aggressive cyclist at a steroid lab: (EKG, echo, liver ultrasound, lots of blood work, re-HLA-typing for marrow donor search). N, Mom and Jim, and I talked with Houston, with NYC, and with each other. After a lot of thought and research the final decision is to re-achieve systemic and CNS remission at NY Presbyterian with our Drs. Then go to Houston for transplant.
My CNS is clear, back in remission, as of Tuesday. This is good news. I've been keeping up with two chemos per week through my Ommaya. Sandy removed my staples yesterday and gave me another dose of chemo to the brain. Once the CNS gets checked and comes up clear again, I'll go to one Ommaya poison-drip per week until transplant.
Re-achieving remission in NYC is going to be about a 2 month process and during those 2 months, MD Anderson will be searching for a marrow match. Once a donor is found and I'm back in full remission, we go to Houston. Approximately 30 days in hospital at MD Anderson (Texas-sized rooms, a Murphy bed for N, exercise bikes on the transplant floor. They do 900 transplants a year and our NY Drs are fully behind us going there since the post-care treatment is ideal and the trip to the ER much shorter than the Olde-Worlde migration of Chelsea to the Upper East Side, which is the equivalent of flat-boating the Erie Canal with a pole to deliver a mixed load of gravel and dung.
The chemo in NYC to get me back in systemic remission is pretty much the same as what I did after my blood turned to lard. Augmented Hyper CVAD, which is high dose Ara-C and Methotrexate, along with Vincristine and dexamethasone. Possibly also Rituximab which would be the only drug new to me. Same situation as last time; after chemo, I become about as capable of defending myself as a shitfaced lamb with hypothermia and the runs. So for a while I get transfusions till my counts go back up, and I get another cycle of the same cocktail.
Then off to Houston.
As happened the first time I was diagnosed, many friends and family asked what they could do, how could they help, could they donate blood or marrow or brisket (brisket donation is actually a very tricky procedure with a HUGE needle).
We are in the process of getting me matched to some random person's bone marrow (actually allogeneic stem cells from some random person's bone marrow, but that's getting ahead of myself).
It turns out, after rigorous testing, that I'm a white guy (there's a little bit of ancient Syrian archer in a chain-mail tank-top flirting with slutty Scottish curd-wenches in there, maybe, but, y'know, spice of life...) and that makes the odds for finding a match the best they can be, which is good.
It isn't that minorities and mixed-race people are somehow medically less likely to match marrow or have healthy marrow, it is solely that those groups are either the last to be reached out to by the Western Medical Establishment or--in the tale told gorgeously well by Rebecca Skloot in The Immortal Case of Henrietta Lacks--have had their friggin genetic material flat-out stolen and profitted from for literally dozens of life-saving generations by white devils like me and my pasty brethren who are crowding up the registries.
So, if your tan beats mine, get thee the hell to a registry, faster than the honkies. You are needed out there. Needed more.
But to any and all of you who have asked about donating, there are two options:
Marrow registry, and whole blood/platelet donation.
Marrow is the brass ring. All the Drs we have spoken to say that, yes, there is some infinitesimally small chance that one of you would swab for a match and it would match me (and if that happened we would haul ass to the nearest Mega Millions counter). But it isn't crazy likely. Your desire to help and willingness to do so has already created whatever karmic juju possible and I'm drinking from the goodness of that like that horse drinking starlight in A Swiftly Tilting Planet.
But do it. Get on the marrow registry. Think about whatever pain or fear or empathy you felt for me or N or family. Think about the swiftness with which a stadium parking lot of sucking nothingness opens under the feet of people when a diagnosis hits. Think that there's a shot you could be the end of the math-terror-roulette I'm feeling now for some person out there somewhere. Hell, it's literal; think about saving somebody's life.
That beats the shit out of a Hallmark card.
So do it.
Go to Be The Match and register. They are the main group, they serve as a clearinghouse for respected national and international registries, and they ensure that your registration links up to a global system quick and clean.
They will either let you know if they're having a marrow drive near you soon, or they can just send you a typing kit and you can do it yourself.
Not that long ago, marrow donation was similar to when I get a bone marrow biopsy. Flip back through this blog, search under 'stealing a part of the soul.' Like, I mean, ouch, and stuff.
BUT NO LONGER!
Marrow registry is now a simple cheek swab, very CSI, very painless. You take a few samples of cells from inside your cheeks and save the DNA material and send it in, and they do lots of quasi-magical science stuff that the State of Texas Education Board doesn't believe and would rather imply that a middle-aged, bearded, blonde guy in a bathrobe does by pointing at things.
It is something of a cliché, but one of those clichés based soundly in truth, that when you finish doing a truly volunteer act for the sole purpose of bettering the life of someone else, you feel bulletproof and saintly, and, frankly, you deserve it. Seek the rush: be an OK person:)
But DO IT.
My union, SAGAFTRA, just sent out a notice to its members about me and registering, and they ran it by me for clearance after being very generous and supportive by moving quickly to set up an outreach about donation. And in the little press release I said that 'nothing shatters like hope.'
More often than anyone wants to admit, someone swabs a cheek because their pal or family member falls ill. And two, seven, fifteen years later they get a call saying "your are an initial match for a patient with a blood or bone cancer. We would now like to move forward to see if you are a true match: it will require some bloodwork and a little of your time."
And by then maybe the person in your life has made it clear, or kicked off, or borrowed your weed-whacker like three goddamn springs ago. And you are further from it, and it seems to loom less large. So you pass.
'Sorry, I'm not interested any more. But good luck.'
The registry groups can't force you. Nobody can.
Hope floats, Sandra Bullock taught us. Hope is a desert flower that survives freezing freezing nights and blowtorch noons and getting sand-duned under and getting no nourishment, but keeps popping up, tiny and gorgeous and fierce.
Hope springs eternal, no matter how hard dictators and self-interested legislatures and shitty teachers and selfish parents and cruel diseases and drunk drivers and avarice and apathy and awfulness crush it into the ground.
Hope does that. It is, in its way, the most powerful goddamn thing in the world. It can't be stopped.
But it shatters.
For something to be so beautiful at rebuilding, at never giving up, it has to be broken, smashed to bits, over and over. Hope is carbon fiber: strong, but so, so light, and so, so brittle.
You don't wanna be the boot that crushes hope's cold pale neck into the mud, do you? Do you wanna be the fist that slams into hope's cheekbone, which shatters?
At the preliminary discussion of marrow match, they told us that they had found 5 prelims for me. It didn't mean much, because they had to reach out to those five for further info, and the national registry computers were sluggish that day anyway so the initial five might turn out to be many more (I have yet no idea what an 'average' prelim hit might be, if one exists).
But they told us five.
5.
And for the first time in a couple weeks, for one brilliant nano-particle of time before normalcy settled in with odds and possibilities and realism, my chest puffed huge and I didn't feel staples or cranial pressure or chemo or a sore throat or fatigue or concern for N's soldier-stance of protection that was stretching to weeks. I stood tall and inhaled deep and, like a perfect jungle-green sprout in a sizzling black arena parking lot, Hope pushed up through the shit, and said Hi.
So if you're having thoughts of registering your marrow, do it. But DO IT. That's all I'm saying.
I have a personal stake, too. Knowing that my illness caused somebody else to be drop-kicked down the line? I'm sorry, that's unacceptable.
If you don't think you can fully pull the trigger, then you know yourself and there's respect in that, so skip it.
If you want to do the equal or next best thing: Give Blood.
Giving blood's all sustainable an' shit: you can re-do it about every two months. My mother raised me to give blood, and the fact that leukemia has taken away my ability to do so forever really, really, pisses me off. You wanna run a cosmic errand for me? Pick up my baton: a pint or platelets a few times a year, until you can't give any more.
If you have a little more time they actually prefer platelet donation. It's a little more involved, but you can actually give more frequently, I think, and, having been in the hospital approximately a shitload and having gotten platelets with alarming frequency during all this, I know how valuable they can be.
When I was a kid at Friends School our Biology teacher, Mr. Wright, told us all through a professorial beard and a smirk that when you finished giving your pint at the Shriner's Temple up the street they gave you a cookie and a shot of Jack Daniels. When I was a punk-ass youth I would walk briskly to the parking lot after my bled pint and light up a Marlboro then drive my pickup too fast with the window open, because the head-rush was much more intense when your blood level was low.
So, you see, giving blood can be fun for the whole family!
Anyway, that's today's lecture. mainly: thank you one and all for wanting to help, for being willing to help. You can help by getting registered for your marrow, and by bleeding. Good stuff.
-Holter
