This one's gonna be hard. Bear with me; I may have to circle around a bit before I can land.
OK, Father's Day came and went--at least that's how I remember it--and the Drs had said they wanted to see us again Monday morning to take blood and see where I stood.
I was having trouble standing.
More of the same discomfort of the GI tract and headaches, but added weakness from the weekend of abuse, and a fun new party trick: the full-body piss-shiver.
This one's for the guys: you know when you are peeing and your whole body shivers without any notice, for no reason, and you can't control it? To quote Carlin: "What is that, man?"
My personal theory is that it is an evolutionary leftover from when we didn't have the opposable thumbs that allow us to shake ourselves dry, and involving the whole body was the best we could do; but my theorizing and $2.25 will get you a subway ride in NY.
For everyone still in the dark about what I am talking about: you know when a baby yawns, and, right at the end, his limbs and trunk shiver in a tight-muscled way?
Like that, only on an adult, with leukemia, and, by the time we got to the hospital, it was happening pretty much whenever I moved. And I was getting pretty freaked out.
My numbers all looked good, the Drs agreed that it was weird but didn't have a reason for it, so they gave me a litre of saline to give me back some of the fluid a weekend on the can can take away, and they gave me IV versions of the best fix-your-guts stuff insurance can buy.
Then they suggested we stay the night. The shivering hadn't gone away, I still felt like crap, and they weren't sure what it was.
They decide that it may be that I, like many chemo patients, have become lactose-intolerant. So what I have had was a general case of gastroenteritis just like the average Jane would get, but my numbers are shot...and I'm feeding a Lactose-intolerant, abused stomach bowls of Lucky Charms with milk, so I'm not helping.
This leads to flurries of shopping and the appearance in the fridge of Almond Milk. How the fuck do you milk an almond? Those people must have tiny hands.
In discussion with N's father and a few of the Drs, the slightly-accepted theory was thought through that I am extremely sensitive to steroids. That the two 100mg doses of hydrocortisone I got on Thursday and Friday for the platelets and Peg-A were enough to either throw my body into a mini-roid fit, or to create a withdrawal in my body as soon as they were gone. The mood fragility and jitteriness of the Pred days were making little appearances, and my voice was squeaking up a bit as well--which was a looming issue, as I am halfway through an audiobook and had a big HBO booking on the horizon.
They don't have a bed yet, so we get parked in the Apherisis room for four or five hours, across the curtain from a woman on a six-hour dialysis that had me counting my blessings.
By around 6 pm, we get admitted to the hospital--finally getting on the other end of the stick and being the good roommate for a guy about my age who had been plagued by a horrible roommate until we got there. The guy was a Bears fan, but you can't win'em all.
I have to cancel the day on the audiobook and call to have the HBO booking moved, if possible. This is one of my marquee jobs, and I have already missed one month's recording dates. They have been wonderful and have made it clear they want me back, but I have enough of a Calvinist work ethic from the cheap Scottish bastards on my dad's side to feel very very bad whenever I move or cancel work, regardless of the reason...obviously.
The evening and night progress, I feel slightly better all the time, and manage to sleep most of the night. Still feel bad, but less bad, in the morning. One of the attendings reiterates, really looking me in the eye as she senses I may not have a good enough grasp of this, that for someone like me, having a White Blood count below 1 is a very crappy experience, and one that may very well make itself known in a host of unpleasant ways I am not prepared for. But it is all just that. For the first time, I am having my immune system crushed by the chemo and I do not have the steroids to mask the effects. So even though my numbers were as low or lower during Induction last month, I was jacked on the pred and--for all the horrors of that nightmare--the pred protected me from the general sense of patheticness I was wallowing in now.
We get discharged from the hospital and head home by early afternoon, and I survive the cab ride without hurling or getting out early. We settle in for the night, and N makes me a nice clean pasta dish that goes down easy and well, so I have a little strength back. I have lost 7 pounds in 2 and a half days.
The next day I get up early, as always, and prepare for the HBO booking. I am terrified, running the HBO catchphrase over and over in my mind and out loud to see if the bass is back. Maybe I am too attuned to it because it is my job, but I can hear the slightest loss of my general vocal strength, and I have gotten used to the weaknesses that the Pred brought out.
And it just isn't there. It is not horrible, and every third or fourth try (living in New York you can walk the streets with your head held high and just say things like "And Now, the HBO Original Series, True Blood!" at full volume and nobody even looks at you) sounds passable, but it is by no means up to my standards.
I get there, I see old friends in the studio, and I do the job. They seem happy with it: it isn't what I would have wanted, but it is better than in the morning, and between background music and technological trickery, it will work fine for them.
More important to me, I have returned and done the job. The audiobook has been great--and the people at the audiobook fantastic--but the backbone-of-my-VO-career-ness of the HBO gig just made it the one I got the most worked up about nailing. And, while I did not nail it, I did it, and as we left they said 'see you soon.' And I smiled.
So, high on that success, I walk over to my agency for an audition. It is June 23, and it is about 10 in the morning, and it is approaching 90 degrees. Humidity through the roof. I stop twice to sit on sprinkler coupling--what you people outside NY would call a 'chair'--to rest, but get to the agency and record the audition. By this time I am weak enough that, if I get that job, I may not be able to reproduce how bad I sounded reading their copy.
N had arranged to meet me after and we would walk home together. On 7th Avenue, she asks how my day went:
"I'll tell you when we get home."
"OK."
"I just can't talk and walk right now."
"..OK."
We get home, climb the friggin's stairs, and I go straight to bed.
Where I lie down to rest the two hours before the re-scheduled audiobook session.
Can't sleep. Can't get...comfortable.
Can't...breathe.
I did not want to alarm N, but I learned from my broken A-fib heart that YOU TELL SOMEONE WHEN SOMETHING IS WRONG, so after testing my theory for a bit, I reached over and tapped her where she sat beside me doing her work on the computer and said:
"I'm not sure what shortness of breath is, but I think I am short of breath."
She freezes like a back-road deer only for a second--really just thinking so many possibilities through in her head at once that if a deer tried that it would shit itself and then explode--and then we call her father, who has her listen to my lungs with the stethoscope--nothing--and describes what he would term shortness of breath. None of it nails how I feel, but bits and pieces fit.
I can breathe, I can draw a deep breath into my lungs, but it doesn't feel any better, like the air isn't doing the job. When I was trying to rest, at that moment when you drop off to sleep, I kept waking myself up because of some fear that falling off might be a lot longer fall than I was prepared for.
We call the Dr and get an answering machine. We call the Dr's service and get an answering machine. We call the cell-phone number the Nurse Practitioner was nice (stupid) enough to give us and leave a message.
We hail a cab. We head back to the hospital.
A brief wait--long enough for the receptionist to re-prove to us that she has the award for worst employee locked up for the year already--and we get taken in to get more blood work.
We feel a little better, I have eaten some Triscuits because I am at the edge of deeply hungry still, but don't have the stomach to get caught up--and the the NP sees us.
She has my bloods from the previous day. N and I figure I probably just need a bag of blood--shortness of breath is a hemoglobin thing, right? But yesterday's numbers are good, so if the hemoglobin dropped enough to steal my breath in a day, that would be worrisome, yes?
This is what I choose to fixate on. Worry, worry, wonder, invent.
Waiting, I can't sit, I can't stand, there's no comfortable position, I can't read my book--another good Scandinavian mystery--I can't stay connected to anything. I have the hood of my sweatshirt up and my hands jammed in the pockets. I am slowly curling, legs crossed tightly at the knee, head getting closer and closer to my lap. It is either an inspired prawn impression, or I am closing in on myself.
Which is just what I'm doing. In my mind, in my chair. There's a screaming in my skull only I can ear--hornets riding race-bikes in tiny tiny circles.
My bloods from ten minutes earlier come back. The NP plugs me into her portable pulse/oxygen monitor to prove her point. My pulse/ox is 100%, likely better than N's and the NP's as well.
I am as healthy as a horse...with leukemia.
The NP tentatively but with certainty says "I think it's stress."
Elephant, meet room.
N flashes her eyes to me. She knows it's stress--not necessarily this, but knows that the now-daily occurrence of our little chat:
"You freakin' out?"
"Yeah, but I'll be OK."
is likely the culprit in at least some way.
I sit on the examining table while the two women slowly reel themselves towards what is in the air already: drugs to calm me down.
I assume everyone reading this knows me, or has at least gotten an idea by now. I hate drugs. I am a straight-edge of the old order. Beer five times to test my hypothesis, champagne twice because of some pushy asshole's birthday--one glass each time. Weed twice to test my hypothesis, twice to be a good pal to my friends, and once to prove to myself that I was, indeed, utterly horrible high. I learned that lesson very fast, as wandering naked really really fast in a circle around the furniture of a cabin in Montana hyper-evaluating everything I have already said and critiquing my performance as myself on pot gets old a lot faster that the drug wears off. Oh, and eating fistfuls of trail mix out of a huge Tupperware bowl the whole time.
Everyopne else can do what they want. I'll judge you, but I know that's subjective. I'm right, of course, but I'm willing to pretend there's room for interprettion if it will stop you from feelng bad about yourself until you are away from me.
I have every reason. I have addiction histories in my family. I have friends who were smarter when I met them than they are now. I have friends who are not my friends any more.
And I have control issues. A dear, drug-addled friend of mine once said:
"You see, it's perfect: Holter's a control freak, and I have no control!"
And then he laughed really hard so he wouldn't start crying.
My four years of High School were the only fours years for about a decade in either direction to not have a DUI death among our peer group. I in no no way take full credit for that, but I drove fully 70% of my peers' cars at some point from 9th grade to 12th. Or drove drunks home in the back of my pickup, stacked like a slave ship, and had the most-awake guy in the back roll them over the gunwales near their lawns.
To get in my truck and drive away clear-headed always seemed like the better option. Not because of some moral high ground, but because it made me powerful. And it seemed to be a power I could create, simply by not doing something. It was, and I openly admit this, all about me.
If some cooler guy at school mocked my stupid hair or the fact that I was an actor or the fact that I weighed 135 my senior year, well, he was just a stoner.
If some punk at a party called me faggot for my earrings and took a swing, well, he was just drunk. And since I wasn't I could duck and not hurt my pretty face...then maybe steal his girlfriend.
Throughout my life, when things have not been good, I have had at least the illusion of control within the confines of my own body.
I am an actor. That is my profession and vocation and passion. If I asked you to 'step into my office' you would have to climb up my ass, because I am all I have.
The one thing, the ONE thing I can return to is that I know myself, I can take the blame for everything I do and I can take the credit for everything I do because I, I am doing it. Nothing clouding, nothing between one and the experience, nothing that might make memory of an act or an emotion or a moment blur into a half-truth of partial awareness.
Tim Leary was a bright guy who got high and lost all value, The Grateful Dead play some of the most boring repetitive music ever created, and if you are still impressed by "Howl" after about sophomore year, you're not trying hard enough.
Drugs are a crutch. And I only have me and my body, so crutches...they're just...
Defeat.
That's what it was. What it came down to for me. To think that this disease, this fucking disease, had gotten me to the point where I couldn't even assume my own body would not ruin me from the inside. To have gotten to a point where I was so turned around, my head so far up my ass, my inner wheels spinning so fast in the mire and the terror that I could psychologically shorten my breath, ruin my appetite, weaken my knees, and push tears through the ducts?
When everything you are is just 'You,' what do you do when you can't trust yourself?
I learn that I am allowed to break a sweat, that it actually helps hemoglobin and that exertion--except right after a Tap, is good. So I can set up the bike on the trainer and not feel bad spinning my feet each day, burning some of it off. Burning.
By now I am very tense on the examining table, and N and the NP are talking options. I know how it will all play out from here, but the symbolic two moments of defeat are still coming, and I am not going to handle it well. the NP says:
"I think Atavan is the better option, because of the shorter time-frame."
"OK..."
N looks up to me, willing me to get out of my head and get into this discussion. For my own good. The NP notices, and asks why I don't want Atavan.
"If I tell you I will probably start to cry."
The NP backs off, but N pushes, thinking, no, knowing, that starting to cry is the least of my concerns, and that I have to push past this, justified or stupid though it may be. Big breath:
"About two weeks before my dad died, when it was getting really bad, they gave him these Atavan swabs we could put under his tongue. Had been totally dry 20 years or so, and the second that stuff hit his system, the gleam in his eye of his old 'lubricated self' came back. Instant (I snap my fingers). He was like 'OK, yes, that's better...when do I get the next one?'
This man who until his dying weeks had a better physique than I ever will, this man who found a Meeting when he came to visit me in Spain and the Meeting figured out it was his ten-year-dry anniversary, and when he went the next day a bunch of Spanish strangers had baked him a cake. This man who got up before the sun most days and had the paper read before I was out of bed. Who wore his shame as a means of self-improvement, who sought to be better all the time, who had Fully. Beaten. His Addictions.
One swab..."When do I get the next one?"
I am not taking a shot at my dad: he was ashes within two weeks of that day. No foul. But the image will never leave me. That's why you don't do it.
You don't want to be owned. By anything.
I cry it out. I know they are right. We get the script. We go home.
Weeping in a taxi and trying to not let the driver see AND trying not to get carsick is an intricate gymnastic that I don't think I pulled off very well.
At home, on the couch, I cried some more. No, I bawled. The privacy, the sanctity of the home and just N and me, I bawled and bawled.
I tried to explain to N just what felt so ruinous about it to me. She knows me, knows my issues and beliefs, and knows the general placement in my head of all this. I told her that, to me, if you peeled back all the layers, or if a disease stripped away all the layers, stealing them from me one at a time until there was just this little kernel left, that kernel would be me, tinily intact, and it wouldn't do drugs to escape some problem, and it wouldn't need drugs to need help getting out of its own way, and it wouldn't be on drugs just because every cell in its marrow had betrayed it.
It would be a defeat. Getting the script was a defeat, and now, taking the pill...a defeat.
She understood, and the she talked me down. She told me 1: people who have had worse things happen to them have felt this way--bottomed out, stolen-from, violated. And that they found out that there was still more of them inside, if they were strong. And I was. That's what she told me; she held my face and told me I was strong. She told me that people close to me would feel much better if I could climb out of the attic of my skull right now and relax and concentrate on healing.
And 2: if you take an Advil for a sore muscle--and I do--then this is just a mood-altering Advil for a systemic sore muscle. It is what you have to do right now to get better.
Left foot Right foot. repeat.
She said it better, and she's right.
I took the pill. It did help the nausea--as nausea centers are located in the brain and not the gut--and I only felt a little slippery when I stood up the first time.
But it is there. The siren: "Maybe you should have another, hmmm? Your stomach's not so hot this morning...that's what the Atavan fixes, doesn't it? Doesn't it? Just take one. N's not awake. Don't tell her. Or tell, but after. It's fine. Its cool."
So, OK, Leukemia. You can have this. You can have this as well. This macho, man-pride control-issue alpha dog bullshit that has been part of the tape and stucco holding me together since before I can remember.
Take it. You can fucking have it.
I'm still here. That wasn't it either. The essence. Whatever-the-hell it is; that wasn't it, either.
You can't have me. I'm still here. So kiss my ass.
