Do you remember where you were when you 'saw' your first invisible box? I do.
I am in Second grade at the Boys Latin School, a towheaded and 'rambunctious' (a seventies euphemism for 'HUGE pain in the ass') lad already beginning to wonder why everyone in my class uses the same restroom, while the blonde and leggy Miss Yarbrough, who drives a silver Firebird, gets the other restroom almost entirely to herself.
Luckily my parents are equally astute, and by Third grade, I am at the co-educational Baltimore Friends school, where half the population gets fabulously bumpier and bumpier every year thereafter.
Anyway, at a school function we are corralled and force-seated, and a gent in snug pants and a horizontally striped shirt walks into a brutal imaginary headwind, ties a nonexistent balloon to a nonexistent string on his nonexistent belt-loop and is almost lifted away, and then walks smack into what I later decide must have been the spring-loaded back of an invisible box trap.
Bumping against the front wall, he used his hands to explore the extent of his prison. It was a good thing the walls were invisible, because otherwise they would have left marks on his fancy white gloves.
After a very thorough checking of his surroundings, including one attempt to do a pull-up and see if he could scale the wall that smashed his head against the invisible ceiling--yet did not displace his beret from it's jaunty angle--he was lucky enough to remember that he apparently carries a key to random invisible boxes in his imaginary pocket.
And all was right in the world.
Later that year a dance troupe came to the school, and I saw my first gay ballet dancer, whose hip-cut unitard and ability to lift his leg straight up the side of his body and not fall over was one of the first deeply complex and multilayered snippets I would later come to understand were the zen moments of a life in the arts.
But I digress.
Anyhoo, that was my first invisible box. And my first mime.
There followed years of tangential accumulated experience and understanding of mimes, and the generally mocked place they occupy in society:
From Die Hard 2:
Sam Jackson: "Are you trying to hit people?!"
Bruce Willis: "No...OK, maybe that mime."
From a hilarious joke to a grade-schooler:
"knock knock."
"who's there?"
"Marcel Marceaux."
"Marcel Marceaux who?"
"..."
Billy Crystal to Martin Short in This Is Spinal Tap:
"Did you do the dead bird? Do the dead bird. C'mon, c'mon; mime is money."
You get the drift. If your personal mime-ography differs greatly from this, you are either currently performing the dumb-show for money, or you're French. Either way, go fuck yourself.
I now eat my non-words, because this week I found myself not only cowering in my own invisible box, but desperately happy that I apparently had that skill inside my poisoned and ravaged frame.
I write this from the hospital. Night two draws nigh.
Oops.
This current sojourn in the city-state is caused by what, really, is the first full-blown bad call on the part of the Drs. Seeing as how I am not dead and all, I reserve the right to still think pretty highly of them and their attention to their craft.
But this week they dropped the ball. On my throat.
Maintenance chemo is designed to keep a patient just suppressed enough for the body to never forget it is under possible attack, and that is achieved with cocktails of poisons specific to the cancer you are trying to keep out.
For me, the largest drug in that mix is Mercaptopurine, or 6MP. Careful readers may remember that, months ago, I had to suspend the 6MP in my main chemo protocol because it was starting to damage my liver--along with the super-cheery addition of making my pee damn near rust colored unless I drank more than six litres of water each day.
This strong reaction was a building block in our developed theory that I metabolize chemo differently than the baseline info; that I hold onto the poisons longer than most, and create an accumulational overload many people don't.
You know, just over-achieving me.
This theory was, as far as we are concerned, unquestioningly proved when the Pegolated Asparagenase tried to kill me by collecting in my system to such an extent that my Pancreas attempted suicide and my blood turned to motor oil.
Whee!
Jump-cut to now, and the two 6MPs a day the Drs start me on. Two weeks in, my white count is 3.5 and my platelets are 75, which is the target.
N asks if that means that we dial back the dosage now that we've hit the numbers.
Nah.
OK, N says, then do we come in for bloodwork more frequently to make sure this is the good dose? I add something pithy like 'I got dark pee.'
Nah.
I get through the Vincristine and the pred, then crash as described in the previous post. I finish the huge long bad book with a couple nosebleeds and a scratch in my throat.
My next numbers are lower, so they dial me back to one-then-two.
Too late, it turns out. Shocker; N was right.
My throat gets worse and worse to the point where each swallow is like the soft tissue of my esophagus and uvula have been replaced with interlocking splinter-piles of crystal shards that crush together in joyous agony as my throat closes over everything.
We go in for bloodwork, and the numbers are lower still and I feel worse.
In fact, now I am neutropenic, fully thirty percent lower than I am supposed to be, and in the zone where activities like subway trips and VO auditions are what is medically termed a shitty idea.
My white count is at 1. Yes, it can and has been lower. But this is supposed to be maintenance. This is supposed to be something of a break. This is not supposed to suck this much.
But suck it does. Suck at a professional level. Suck like the sound you can hear if you are watching Glenn Beck and he tries to create a linear thought not driven solely by the fact the he is infinitely pudgier and uglier than the black guy running the country.
Then, THEN they hold all chemo. And put me on Augmentin, an antibiotic that apparently works best in patients who hate swallowing when administered in two 875mg pills that are each about the size of a bear turd. No gopher hair or berry seeds, but still...
That was Wednesday.
That night I go febrile--the cool doctory word for a fever--but not crazy febrile, and an intrusive call to the NP at home recommends staying put and roughing it out because coming into the ER would suck even more.
Concerning that point, she's dead-on.
Friday morning we haul ourselves back to the Citystate and are spelunking for Drs before 9am. We find the boss-Dr, who takes one look at how slowly I am walking--and likely also at the thinly veiled fury on N's worried visage--and fast-tracks us into the ER for IV antibiotics before admission to the cancer floor.
Being neutropenic and febrile gets you your own room in the ER, which is nice because we spent the whole day there, ably administered by a nurse who runs hundred-mile races in other countries in her free time.
They start me on an IV antibiotic, and fluid drips to counteract the fact that it hurts so much to swallow that I am not eating or drinking much.
We spend the predominance of the day alone in the room, neither gaining nor losing health or info. We discover that the different cable provider for the hospital has a Long Island-based syndicated station that runs Jeoprady a lot earlier. And the ER doesn't block channels until payment, so there's that.
OK, totally not worth it. But it is the Teen Tournament. So we get to see the snotty bitch advances to the semis even though she lost because she bet less.
We get a bed upstairs amongst friends and familiar faces by 8 or so. My roommate was called 'Tony Chevelle' in his youth because he had a blown '69 muscle car with a powder-blue paint job he and his pals raced down the then-less-choked boulevards of Jackson Heights, Queens--which I could have looked at all day through the thick February rain if Chevelle hadn't beat me to the good bed.
The muscle car is beat to hell, whimpering, short of breath, and calling the nurse's aides every hour or so through the night to get help pissing or shitting or getting analgesic cream wiped in his crack. When he naps he turns the lights out but leaves the TV, tuned to the particularly mindless Fox affiliate all day, on full blast. Just so you know, Judge Wapner's replacement is a shrill harpy, and Divorce Court could be the TV show likeliest to represent the bottom-most layer of human idiocy...not on Fox News.
They've given me Nupogen, the daily version of Neulasta, designed to speed the improvement in my counts. Nothing yet, but that's not surprising.
I've continued getting fluids, through an IV needle in my left forearm, along with drugs and antibiotics. I stayed non-febrile for most of the day but started popping above the line again a couple hours ago. And swallowing is still it's own wicked version of oral sword accidents.
Good times.
And all week, pounded by the imminent or active theft of my hoped-for better days, I have found myself in my invisible box. Arms tight around myself, avoiding eye contact with everyone--even N sometimes because I'll cry if I see how strong she's being forced to be. I huddle in my hypothetical port-o-potty, silent and staring at nothing, mildly more secure in the safe space of the imagined walls, ceiling, and floor.
And for that I am thankful for mimes. Which would be hilarious on a different day. Hopefully it will be soon.
I'm extra grouchy because this one could have been avoided. Or mitigated, to some extent. I understand that the medical establishment has to have generalized assumptions from where to base care, but I think I wandered close enough to the suburbs of Corpsetown USA showing them that I take the chemo a little differently, and more dangerously, than many of their patients with my Leukemia.
And because, as I said, we were supposed to get let off a little.
I know, I know. In the grand scheme the worst should be assumed, prepped for, and endured, and so any weakening of my or our defenses caused by an assumption of slightly easier days is our own fault.
But I gotta tell you, I was near the limit. The main fight drained the shit out of everyone; and we're strong.
That little reprieve bored into our consciousness, unavoidably glorious in it's promise of minutes on end not 'doing what ya gotta do' to make it to the next sludge moment or weak feeling.
That little reprieve was a slow day on a hot beach. A crisply bubbling coke and a tub of popcorn you could hide a midget in and eat for half the movie till you grabbed the top of her head.
That little reprieve was...sigh....needed.
But we don't get it. Not yet. One of the many reasons birthday requests and anniversary to-buy lists rarely include "item 1: cancer!"
We don't get it. Not yet.
And that's fine. You hear me, cancer? You still can unequivocally kiss my lily-white ass. Kiss it. Just fucking kiss it.
If you need to find it for a nice screw-you pucker, I'll be here on the cancer floor for a couple days. I'll keep it nice and humid on the rubber sheets in anticipation of your goddamn lips.
Kiss it.
