So you do what you can while you're not too tired from the pain meds, but you don't want to get really involved with anything, because when are you going to hurt? If you're away from home and you start hurting, then you'll have to get back home to take care of it.
Plus, you'd have to talk to other people when you go out. And that's not feasible at the moment. You can't talk. I hate opening my mouth. It's embarassing.
I emailed Dr. Crane's nurse today to give her a progress report and let her know when I planned to go back to work. I saw Dr. DDS yesterday, and had hoped that I would get a new speech bulb, but apparently I'm not healing fast enough, even with all the supplements and good (pureed) food I'm eating, and as careful as I'm being to clean all those defects and stuff.
I won't get a new bulb until Monday at the earliest. I have to go back to work the following Monday, because all my time off will have run out, and I really don't want to have to do short-term disability. Besides, I'm bored. I'm bored to tears with being here at home, except for short trips, and not doing much.
But. Back to Dr. Crane's nurse: he met with the tumor board today. I've been loath to publicize this too much, but his personal opinion after surgery was that I wouldn't need radiation. Given his experience and how aggressively he resected the tumor, and the brilliant pathology report he got back, he said, "I wouldn't do it if it were my own head." He wanted to talk to the tumor experts, though, just in case they had a different point of view. I'm young and yadda yadda.
He didn't call. I don't know if it's because the news was good and he thought it could wait, or the news was bad/mixed and he thought he might need more time to talk to me. I learned today when his nurse told me he'd put my case up in front of the tumor board that the terror you feel never changes in type, just in size.
And now I'm scared, because I have yet another damned wait to wait through.
I don't know why I'm not healing faster. I want to heal faster; I'm impatient. Nobody's said that anything looks wrong; Dr. DDS said yesterday, in fact, that he wished he had more patients like me. I want to be able to talk. If, a year ago, you'd told me that I would be jonesing, impatient for a crude acrylic lump on the end of a slightly-less-crude plastic thing that would enable me to sound like something other than the Elephant Man, I would've been stunned.
I hate eating pureed food. It's not worth it anyhow; because of some way that they put the retractor on my tongue and cranked my jaw open, I don't have much of a sense of taste. That'll come back, but nobody knows when. Plus, it hurts to swallow, and chewing is out of the question. I'm sitting here glaring at this glass of fucking pureed black beans and wishing I cared enough to want a burger.
I hate walking into the kitchen every night and taking out the prosthetic and scrubbing it with dishwashing detergent and a brush. There's a lot of slough that builds up on the thing, and given that it's the floor of my sinuses, it gets pretty damned gross. Tonight I scraped off the usual crap and realized that I'll be doing this for the rest of my life, or paying somebody to do it for me when I get too old to see it.
This is the end of middle-of-the-night pillow-talk, too. Friend Lara and I were talking about this today, how a cancer diagnosis and surgery and everything else can make you feel distinctly un-sexy, even if you've not got cancer of the ladybits. How the hell do you tell somebody that you've got a scary plastic part before they discover it, as it were, for themselves?
And, since I've been single for a year and a half now, it brings up the subject of dating after a cancer diagnosis. That ought to be fun. That's something for the future, though; not so much in the spirit of Not Borrowing Trouble as it is I'm Just Too Damned Tired. Still, this is another scary thing: going through this without a partner has been lonely enough that it makes me wonder what the hell people who are single most of their adult lives do.
I hate hurting all the time and being vaguely stoned from pain meds. I hate not being able to gulp down a glass of water when I'm thirsty. I hate having to eat and drink everything lukewarm. I hate it that I'm not at My Favorite Bar tonight with Joanne and Willie, watching hockey and eating a burger. I hate waking up at three a.m. being scared something awful will happen, then not being able to get back to sleep for hours, then sleeping until noon.
I thought things would get better once I'd had surgery. It's a huge milestone, right? But now I'm back in cancer limbo again, waiting to see what the big-brains at the cancer center think about hitting me with beams, waiting for my throat to heal up enough that I can get a fucking plastic piece with wires on it to enable me to speak (obturator, I hate you and long for you all at once), waiting to stop being alternately energetic and exhausted, or achy and stoned.
Yeah, yeah. I know. Low-Grade. I keep thinking that, and trying to be grateful, but let me be honest: It still sucks to be missing part of your mouth and throat. It still sucks to be waiting for news. It still sucks to manage the side effects of the medicines you're on and the stuff they gave you in the hospital. It sucks to hurt. It sucks to be alone in that nobody you know can sympathize, really.
Even tough, strong, brave, upbeat people get the blues. This is what that looks like.