Though there is more than precedent that when I say 'this'll be a short post' I am lying like Eric Cantor whenever his mouth moves, this really will be short.
Because I am fuckin exhausted. And so is N, and my mother, and my stepfather, and a good hunk of the oncology team.
Because...the leukemia came back. Which, you know, sucks.
Quick recap:
My last post was from the moment when I was about to step off maintenance and prophylactic (tee hee) drugs and start life as a really worried dude not in treatment for leukemia.
Then my hamstrings started to hurt, or feel brittle, or something. N was smart enough to be concerned, leave it on the radar. And then I started to get tension-y headaches. And then those headaches got worse.
We ran it by Sandy and Feldman and paranoia was the better part of valor, so I got an MRI a week and a half ago or so.
The MRI came up clean, but to be super-safe they wanted to schedule me for a Tap so they could check to see if the disease had relapsed in the Central Nervous System (CNS involvement).
We left the city for the weekend with the Tap skedded for Monday.
Headache gets worse.
3am Friday night the headache wakes me up in a manner that is like what it must be to have someone look you calmly in the eye as they break your finger. With pliers.
I puke. Puking from pain, plain and simple. Yay!
7:30 am. Headache puke 2.
10am.
10:30am.
Now we're getting ready to drive to the hospital. N has made all the calls and packed the car while I'm laid out. Sandy is setting us up with a room so we don't spend time in the overcrowded ER.
Driving back to the city there is a huge hill that raises and lowers the highway altitude about 900 feet to half a mile. The headache became a religious event--Moses shoving screwdrivers up my nose. Winding up like a softball pitcher.
We get to the hospital, I puke in the parking lot, we go in.
There follows a few days of something I am too tired to describe right now and am not ready to revisit. Suffice to say N was strong--staying colossally vigilant in unimaginable conditions--the Drs were worried but on the job, mom and Jim broke sked and hauled their dedicated asses back east from Montana, and I may have suffered through through some of the worst nights of my life.
I'm in for about a week. No solid food. Fluid drip. Hurling on a regular basis. I'm on Dilauded--a very strong opiate I hate but need--and anti nauseal shit to keep the horror at bay. The Zofran (anti nauseal) lowers the heart rate in large doses, and since I have a low rate because of running I'm thumping along in the 30s and 40s. I'm like Eyore, but with cancer.
They send us home.
I'm sleep deprived, terrified, my mind is flitting like a barn swallow so I can't sleep. I'm running a low fever.
I flip out.
Between the sleep drugs, the decadron roid, the Ativan, the terror, all that shit, I am trapped in a concentration camp in my head, running a hamster wheel of awful.
I lock onto an image of antique chairs. A room full of dark wood chairs with baroque points and trimmed angles. Pointed, like falling against them would hurt.
One chair is my enemy. They are all advancing slowly, but there is a lead demon chair that knows my mind is shredded and that I am alone and small and frail and trapped.
To combat it, I pick the lead chair. I stare at it, I tense every muscle I have, freeze myself like a fight dog awaiting. I stare at the chair. Stare until it knows I see it, until we are the only two points of pain in the universe.
Once the chair and I connect, time passes.
Time passes.
Eric Johnson's 'My Desert Rose' is loop playing in a twelve second shred. Over and over. It is the sound of going insane.
Time passes.
I address the chair:
"Fuck you."
This stare-down with the chair lasts about forty minutes each time. Then I drag myself to the the bathroom and splash water on my fevered self. Then it starts again.
N is lying there next to me, experiencing this from the outside, but she thinks my 'fuck you' is me cursing the headache. That I am hacking it: having a rough night but soldiering through. I'm misleading with the outward actions of my bad trip.
But I'm going nuts.
Finally she wakes me from the trip, interrogates me to define where off the rails I've gone, and makes a command decision to call an ambulance, making sure that it will take us to our hospital before she calls for it. Not some other place.
Back to the hospital. Yay!
Another week goes by. Still very little solid food. Because there is a possibility that all of this comes from the Taps and the chemo, I get an Ommaya.
An Ommaya is like the Reebok pump but for chemo and your brain. I get a hole cut in my scalp, and surgeons crack through the skull to the fluid below--fracking my mind!--and install a little bubble thingy like my Port. Drs can poke a needle through the skin and into the bubble, draw off CNS fluid to check it for relapse, and squeeze in methotrexate and Cytarabine as needed to try to kill the CNS crap.
So no more Taps, and hopefully less trauma with putting chemo in my head.
Which brings me to the truth: my CNS bloomed with 1700 white cells of badness. Then after the next tap/Ommaya down to 1000. Then; 6.
A bone marrow biopsy has shown that there is a tiny amount of leukemia in the actual marrow, also. It had been 'sanctuary' but apparently popped out and roared back. Quasimodo on meth.
So now we're in Houston, where there's a rodeo. We're checking out MD Anderson Cancer Center to see if their version of getting me leukemia-negative and then transplanted--because that's what we do now--is better or worse than the way our Drs in NY would do it.
Like I said. Long couple weeks.
I'll fill in more later, but wanted to get something down. Talk to you soon.
