(Just tuning in? Read my diagnosis, pre op, and first post op posts by clicking on the links.)
By Thursday night, it was obvious that I’d developed an infection, either from having a weakened immune system due to the surgery, or from having my throat scratched up by the breathing tube. I wasn’t coughing up blood anymore, or at least, not much, but I was having horrible, full-body, massive, shaking coughs, and what I did bring up was sickly green. My surgeon prescribed me an antibiotic, ordered me to use as much OTC cough medicine as I could stand, and warned me that all this shaking off my head might have the same effect as blowing my nose or lifting heavy objects… It might knock loose my newly implanted cyborg stapes, requiring another surgery. Or it might cause so much swelling that the nerve in my ear is crushed.
I’ve been taking prednisone in hopes of avoiding exactly that, and I’ve been very good about resting, moving slowly, keeping my ear elevated properly. I’ve slept on the couch all this week so that I don’t roll over, so that my healing eardrum is pointed skyward at all times when I lie down. If I end up doing everything right, and losing my hearing, or having to go through this all over again, because of a stupid cough — well, there really won’t be anything I can do about it, but I will definitely be angry.
I am starting to be able to be upright and mobile for more than 5 minutes at a time. I think it’s honestly just been today. Even last night when I tried to cook dinner or fold a load of laundry (like it’s been all week) I have to go back to my couch and take a nap after. Today I’ve done a few things, and yes I had to go sit down again, but I’ve only had to nap once! I’ve been so tired this week that I’ve been too tired to read, or knit. There were a couple of times that I’ve been too tired to watch TV. So I just turn the lights off and go back to sleep.
I have developed a weird side effect, which began probably Wednesday — I didn’t have it on Tuesday. My sense of taste is screwed up. Officially, the lingering plastic/metallic taste post-surgery is called Dysgeusia; it’s likely temporary. I may have it for another week, or another six months, but all of the literature suggests it won’t be permanent.
In addition, I’ve lost my sense of sweet. I can smell sugar just fine, and when it’s concentrated, like jelly, I get the general idea of what it should taste like (though it’s probably just that I recognize the scent). But sugary food has completely lost its appeal for me. It tastes wrong somehow that I haven’t yet been able to describe. I keep biting into or drinking things I usually love, and end up either suffering through the experience for the sake of calories, or throwing it out. It’s disconcerting to smell the sugar lingering on a cookie or glass of my favorite soda, but find that when it’s in my mouth, it’s empty. More than lacking taste, it’s actually nauseating to try to consume. My brain is basically saying, “Fuck you, what did you do to my food? Hell no, we are not eating this soulless abomination!” My brain feels a bit cheated, I think.
I have no idea how long this will last.
Luckily, I still taste salty and savory foods, and they don’t seem to be much changed. (I haven’t tried spicy or bitter yet, but I’ll let you know if I’m missing them too. I think it’s just sweet that’s abandoned me.) And since I can barely move, I have spent a couple of hours poking around Pinterest, updating my boards. Mainly, I’ve been looking for recipe ideas that are fast (since I can’t yet be upright for long enough to cook something complex) and savory. Using Pinterest, which I hadn’t done in several months, helped me to sort out the steps, calculate time and ingredients, and the pics motivated me to try cooking even when I didn’t feel like eating.
Plus, I sorted out what I want to make for DragonCon! More on that, later.
My hearing is hard to describe right now, and I don’t yet know whether it will get better or worse from here. When I got out of surgery, I knew I could hear better, because the room seemed loud, and I caught part of a conversation two nurses were having in down the hall. Before surgery, I hadn’t been able to hear the doctor talking to the patient in the next bed over from me.
But by Wednesday, it sort of clouded over. I was expecting this, so I didn’t get worried until my surgeon told me that coughing was dangerous… Right now, I have moments where I hear noise in my right ear as a vibration, like someone set a speaker face down on a metal plate. A passing car, or even some conversation, vibrates in my head but doesn’t quite translate to sounds I can comprehend. On the other hand, background noise can be painfully loud — I ventured out on Wednesday to get food for Logan, and had to cut my trip short because the noise in a (fairly empty!) grocery store was overwhelming. I asked my son to turn down the TV today because it was unusually loud, and I thought he’d turned it up from where I had it earlier today… But he’d actually turned it down when he put his movie in it.
At the same time, conversation isn’t much clearer; I still have to use the close captioning.
Part of all of this is that I’m in the process of healing, not done with it. Partly, I have packing in my ears, a biodegradable gel both “outside” my inner ear, which the doctor should remove next week, and inside my sutured ear, which will dissolve on its own. Eventually. Until that happens, I won’t know the real results of all of this.
Most of my pre-surgery planning has been useful: I love how I’ve been able to stay connected, and even a little entertained, just by having my tablet with me this whole time. I had set up a little table next to my couch with my meds, knitting, a book, chargers, TV remotes — everything I’d need if I was truly confined to one spot. I had hoped I wouldn’t need it, but since I did, it was good to be prepared.
The one way in which I didn’t prepare properly was food: I bought Popsicles, yogurts, jello, juices, sodas — soft, sweet, foods for recovery. Can’t eat it. I also wasn’t expecting to be quite so lethargic for this long, so we run through the food that Logan can heat up to feed himself, and whether I’m “up for it” or not, I’ve got to get myself up and cook for him. (I did order pizza this week, which he loved, but now we’ve spent our food budget.) If I hadn’t been sick before the surgery, or if I’d realized I wouldn’t be able to eat the usual favorites, I’d have cooked more in advance — not just have ingredients, but actually prepare single serving meals that only need to be reheated. But how do you guess in advance that you might have a rare side effect, and then guess which taste you’re going to lose?
I wish I could say that I’m for certain getting better, and that I’ll get at least some of my hearing back. When I know that, I’ll be able to look back and see that this time was a fair payment for the good that came next. I hope so. I’m just not there yet.
If you’d like to contribute to my medical expenses ,click here, or use my PayPal address — same as my email: carriecuinn at the gmail. And, thank you.