Up days, down days, and always learning.
I'm getting a little tired of always learning.
My list of accomplishments was, while of great value, not fully placed in context. All those activities from last week were real, and true, and made me happy.
But that was only one week. One week amidst many. The second half of that week on steroids.
I had worried about the pred hurting my voice, squeezing it like it had done during the main protocols. Rendering me incapable of earning my living, maintaining my health care plan's earning minimums. Feeling like I had any connection to the acting world from which the disease yanked me last year.
So far the pred seems to not hurt me that way in maintenance. We'll see how it progresses, but for now my voice was strained but not shredded, my bottom end harder to find and hold, but there if I really dug down for it.
Monday was the start of a full week recording an audiobook that had many pages, was with a new employer and was, how shall I say it?
Bad.
Audiobooks can be hard to do. It is a particular skill--reading over a hundred pages a day of somebody else's words, telling their story, filling their characters with life. All the while not moving your head more than a couple inches so that the microphone can have an even level of recording. Keeping characters in mind so that, when they come back eleven chapters later, they sound recognizable. Catching yourself when you mispronounce or misstate or misspeak, or hearing the engineer or director when they punch through the headphones you wear to tell you you messed something up. You have to go back to before the error and ramp right back up to where you were before, and then keep going. Keep telling the story. Anywhere from five to seven hours a day until the book is done.
It is an odd way to make a living. An odd form of acting. And when the book you are doing is horrible, it all just gets exponentially worse.
So Monday I am an hour or two into the book, trying to impress the new employer, trying to keep a good pace even though I feel a little under the weather. They know some of the general details about the Leukemia, but to use that as an excuse would disgust me with myself to no end.
Then I get a nosebleed.
Wheee!
I take a minute outside the booth to staunch the flow and it stops for the most part. So I go back in and read some more, make it to the end of the day. Go home and tell N.
Make an appointment at the clinic for Tuesday. The maintenance is still new enough that my platelets may very well be dropping, or any other number of possible badnesses.
So I go to the audiobook the next day and try to read really efficiently so that they are less angry that I have to leave early to go to the hospital.
I get stabbed three times--remind me again why I ditched the port?--and see the NP. My numbers are all lower than they were when we were in last week. N has looked at the past notes and the 6MP hit me more in weeks three and four than it did in one and two, so it could be that the poison is piling up and dragging me further.
It could be the cold I seem to have picked up. It could be the pred, or going off the pred. It could be the Methotrexate.
Jesus, it could be a lot of shit.
But, while low, the numbers are not dire. They tell me to alter the 6MP dose to one a day and two a day alternating, as opposed to two every day. Then they'll see what the numbers look like next week.
So home I go. And back to the audiobook Wednesday.
I get through it, but I am dragging. Arms limp in the chair, feet falling asleep as I read, intermittently not sure if I am reading with any skill at all, or just mumbling words in a nominally coherent order so that it will end. Wednesday's tough.
Thursday's murder. I get a good night's sleep, but when I wake up it is all I can do to get out of bed. Every time I stand up or head toward the dresser, I find myself sort of slipping back into the bed, flopping onto my back, not leaving the cocoon.
I feel very close to the border of ability, like there is a very thin membrane between me and simply not being able to do anything. I have visions of falling down the steps trying to go to the job, I have visions of passing out on the subway. I have empty flashes of sweat and fear blowing through my head.
I'm terrified. And I don't exactly know of what.
N tries to help, and does. It looks to her, from a vantage outside my own fear, that it is as much in my head as anything physical. I worked out all last week, I have a cold but am not floored, I have worked a lot but have been pretty much myself.
It has been a while, but she recognizes it--this is me, not getting out of my own way. This is me spinning my wheels.
This is the new dragon. Maintenance. Where the holes are not as deep, the battles not as pitched, but the stakes are equally high. This is swinging your sword into the mist, hoping and weeping and maybe making contact with an enemy. But maybe not.
This is two and a half years stretching into the distance, unbalanced, uncertain, unnerving.
I am paralyzed, in the living room. Can't seem to get out the door. Scared I won't make it to the job. Scared I won't make it home. Listless. Sad. Crying.
Crying.
It's been in the air for fifteen minutes, but finally N up and suggests maybe I should just take an Ativan and get past it.
You know...defeat.
She knows how I feel, but she can see me, in front of her, spinning my wheels. I can see me, feel me, sense the jittery thin-ice nerviness that I am clouded by.
I don't want the goddamn Ativan. I am on maintenance. I am progressing. I have been working, running, swimming, biking.
Smiling.
I can't stand the thougt of backsliding into needing some fucking drug. Just to 'make it better,' just to 'get through the tough spot.'
Defeat.
But I'm trapped, eye-rolling like a spooked horse, not leaving the damned apartment, sniffling and yelping and sighing, but not getting the fuck out of the house, not going the fuck to work.
I take the tiny bastard. Put it in my mouth. Cough-cry at the humiliation.
Shoot water from the water bottle. Swallow the pill.
Cry. Cry cry cry like a boy who lost his dog. Weep for the fleeting flight of whatever strength I thougt I migt have built back up, might have scratched back from the dragon.
Nope. Nice try, tough guy. Sniffle, sniffle, take your pill. Momma's little helper. Sissy.
Now, I know, stepped back from the immediacy of it all, that these reactions are overblown, overwrought, over the top.
But no less true in the moment. No less devastating in the moment.
I just have to live with that. Roll with those punches.
N did a bunch of research as I stumbled toward the bad audiobook, and it seems that there are many people with many ailments who feel very strongly that steroid withdrawal, in a word, sucks. Makes you feel extremely weak. Knocks you out of sorts. Throws you completely off. N's father the endocrinologist has explained the strained and wildly erratic manner in which steroids and the body's built-in systems hand the physiology back and forth when you are on, and then off, steroids. It is not a seamless handshake between two gentlemanly cooperators. It is more like a bully kicking in the door of a movie theatre, stealing as many junior mint boxes as he can fit in his pockets, and then leaving the popcorn machine to run all night, until the oil burns off and the screen burns down, and there's nothing to do in town on a Saturday night, ever ever again.
Steroids are brutal. And bodies give way to them. And when steroids leave, bodies react badly. People react badly.
I react badly.
So...that's good to know, I guess. Another bit of info to squirrel away until I need it again. Until I wake up scared to wake up again. Until I stand in the living room, lip trembling, scared to start my day.
Now I will know, and hopefully knowing will be enough. That little pill, which I have to admit helped get me through today, can kiss my ass.
Next time.
