I haven’t been saying much about all this yet, mostly because I’m horribly disappointed in my progress, and embarrassed, and also guilty and ashamed that I’m not better yet. This is what happened: my first day back to work I felt pretty fantastic; the next day I was tired, the day after that my joints started to swell a little. But I recovered alright, and aside from being increasingly tired, I was doing sort of okay. There are some things I didn’t want to admit to: while I used to be multi-task a lot, now I can’t seem to. I forget about other windows too easily. I’m easily distracted and forgetful. I’m having trouble concentrating at all. I feel sort of blank. Things went rapidly downhill after that, until within a few days I had excruciating, nearly immobilizing pain in my hips (for reasons as yet unknown), I burst into violent sobs with no provocation or apparent reason whatsoever, and I was entirely, completely exhausted. I hoisted the white flag. I know when I’m beat. My GP took one look at me and said, “Okay, that’s enough. Rest.”
He also told me the thing I hadn’t known yet: my first post-radiation nuclear scan showed something unexpected. That’s why I got called back to the hospital to do it again a week later. It wasn’t a technical problem, or bad pictures. My thyroid bed was lit up like a christmas tree on the scan, indicating more remaining thyroid tissue than expected. My GP told me this because I wanted to know and no one would tell me. He isn’t sure what they’ll do about it. He mentioned “a second surgery”, but that doesn’t seem likely to me, and my GP admits that he has no idea. My surgeon is good. If he didn’t get it out the first time, it’s not coming out. Possibly it means another round of RAI (radioactive iodine), which is not a great scenario either. Going hypo is hard (and takes up to 5 weeks), and recovery from hypo is hard (takes anywhere from 2-3 months). My current recovery has been difficult and I don’t relish the idea of doing it again. But I won’t find out more until the end of the month. So this is why I didn’t get a cake with writing on it in pink icing saying YOU’RE CANCER FREE!!!! They don’t quite know yet. Not for sure.
Everyone told me this was a simple deal; surgery, lounge for a while, sit under a machine for a while, take pill. Easy. I can’t overstate how much this was a poor description of what was to come. And at each stage I thought I was over the very worst of it, only to discover that there was another, taller hurdle to leap over. There is all at once too much information about thyroid cancer around and also not enough. I guess no one is ever ready to hear the whole truth.
I’m reminded of the terror that shook my whole self prior to that surgery; I was terrified of what lay beyond that point when I walked into the operating room, and not just because I was scared to have surgery (which I definitely was). I was scared of the whole thing: being cut, being bandaged up, being in pain; going hypo, the possibility (certainty) of having cancer. Having to incorporate all that into me. Having to be strong enough through that. And now I understand why that terror was justified. It’s not that it’s horribly painful (though the hips, as I say, were really something else, but that has now subsided). It’s that it alters absolutely everything about who you think you are. It’s hard to pick up and move on; you’re just not the person you think you are.
The chief librarian at my place of work likened it to having your central control panel ripped out, and that’s a good comparison. My own metaphors are much darker.
My whole life I didn’t feel all that much of a mind/body split. I am what I am, and all of me is me. It was a very simple equation. Right now I feel like a wine topper stuck on top of a bottle, a disembodied personality; I’m attached to this body, but I have no idea how it works, and half the time there appears to be no relationship at all between what’s going on in my mind and how my body is behaving. I am a terrible judge at what will make me feel good or bad, what will make me cry, what will exhaust me. I can’t determine how much I can do before I hit a wall, I seem to be deaf to any hints my body tries to give me. Today I actually hit a wall in the middle of a sentence. Normally you know how much oxygen and energy you have left to say what you were about to say, but not me. Not right now. All my dials are flailing. Nothing tastes or smells the same, on the banal edge of it. While I never got car sick before, now I’m noticing it, a little, when I take the bus. Where did that come from? Twice now I’ve carried gifts onto buses and left them there, just sitting there, on the seat next to me. Didn’t even notice they were missing until days later. It’s as if I’m not really here at all.
So my realization is this: synthroid (artificial thyroid hormone, to replace my absent thyroid gland) makes me different. Of course it does; given how much it controls, it’s like my new landlord, my new roommate. I’m still me, but my body is now fundamentally different. I’m a pharmaceutical cyborg, with a crucial bit of my physical functioning turned over to carefully calibrated technology in the shape of a tiny purple pill. It’s not as if there was a choice or any other alternative, so there isn’t much room for regrets. If I stop taking it, I get sick and die. Until that looks like a valid option, there’s only one way into this town.
I live in a fundamentally and permanently changed my body, and I need to accept that and begin to learn its rules and cues. There must be a time, when we’re very small, when we don’t know our bodies very well. I can’t imagine that we know from birth how our bodies are going to react in certain circumstances, how we need to protect them. (I can’t help but split mind/body even in my sentence construction; it’s so old school but so completely my reality right now.) Somewhere along the way we must learn to make friends with our bodies, to listen to them and just know, as if instinctively, when something’s wrong, or when they need something, or when we can step it up or need to step back. My slate is wiped clean and I have to take it slowly, learn what I can and can’t do.
It’s not something they’re likely to tell you when they diagnose you, though I’m sure I wouldn’t have wanted to hear it.
You’re not going to be just you anymore. You’re you + synthroid. It will be different.
I suppose I’ll get used to it with time.