Post Surgery Update Day 8: First ENT Checkup

My first post op exam was this morning. The highlights:

I am healing very well, considering the secondary infection from the breathing tube, and the rough night I had Monday.

I won’t have an audiology test for 6 weeks, but my hearing has obviously improved. My surgeon says he didn’t have any worries on that account; the placement of my implant was “perfect”.

I still have gel packing in my ear that needs time to dissolve, and I’m still healing, so it will be up to three months before my hearing stabilizes to its eventual level.

I didn’t spend enough of the last week resting. My surgeon said that even without the damage to my throat during the procedure (which he said isn’t unheard of, but isn’t common either) I’m still recovering from a major surgery, and he basically made at face at me for not having spent that whole time on the couch, being taken care of. Apparently most people would have just accepted that their bodies were healing from grevious injury. It just didn’t feel like an option for me.

After a couple of days of overwhelming super-hearing, I ended up having more input than I could take, Monday night. I had a terribly physical reaction, nausea and tinnitus so loud I didn’t get to sleep until after 4 am. On top of that, my implant felt out of place, and heavy, like someone had hung a fishing weight from my eardrum; I couldn’t get comfortable, even after two Percocet. Tuesday morning I woke up — and it was so quiet. I couldn’t hear out of my right ear at all.

As the day went on, it slowly mostly came back. I haven’t quite regained my super hearing, and my ear is still popping a lot (like when you change elevation) but I think if I’m careful, it will heal. Given a choice — because I’ve been reminded now that it’s one or the other — I’d rather hear too much than not at all. It was scary to think I’d screwed up and maybe lost the hearing I just got. That’s not an experience I want to have again.

I’ve run out of disability time off, so it’s back to work for me. I’m still taking the antibiotics for the infection, until they run out, and now I’m started on an antibiotic drop for my ear that should help dissolve the packing. I have to be gentle with myself, and maybe do a little less than I’ve been trying to get done, at least for a few more days.

Well, I’m supposed to, anyway. But I have a family to take care of, a day job, writing and editing to do… A week off was already too much. I’ve got people asking me why things aren’t done yet; did I mail that check to my mother? did I get that email about that project? do I know where the key to the prescription cabinet is at work, because my coworkers are texting me?

Recovery time is nice in theory, but real life doesn’t work that way, for me.

Post Surgery Update: Day 6 — My Regrets, Let Me Show You Them

Most people had no idea how much hearing I’d lost, before I started talking about it a few months ago. Partly that’s because I like my privacy, and because in the grand scheme of things, a little hearing loss didn’t seem to me to be as worthy of mention as the other tribulations so many people go through. Partly, it’s also because I didn’t realize how deaf I had become, until I got some of my hearing back this weekend. I tend not to focus on the negative parts of my life, because my life has always been hard one way or another — whatever I overcome is just replaced by the next thing to be overcome. That’s life, for me: a series of growing pains and teachable moments and relished victories leading to my eventual awesomeness and world domination. (Or, you know, my ability to generally actually like myself, which I have now, and I know most people don’t.) But I live how I was raised, with the basic idea that it’s better to stop complaining and start fixing, when presented with a problem.

When asked, I’ve explained that losing my hearing was a lot like how you cook frogs.

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(Yes, that face you’re making right now — that’s the same face everyone else made; my ENT surgeon, surgical nurse, coworkers, etc. How is it that no one knows the old story about how you cook frogs?)

When you cook a lobster, you boil a pot of water and you drop the crustacean in. You’ll hear a terrible, piercing whine that you might think is the poor thing screaming, but you’ll be assured that no, it’s just the sound of air escaping its shell very quickly. Regardless, the lobster isn’t going to be able to do anything about its situation, and soon enough it’ll be cooked.

Frogs are a bit smarter, or at least equipped with the ability to escape. Drop a frog into a boiling pot of water, and it will immediately jump back out. In order to cook frogs, or so they say, you need to put them in when the water is still cold. Then, bring the temp up slowly. They’ll get used to the changing temperature, getting warmer and warmer, until it’s too late and they’re being boiled without realizing it. I lost my hearing over several years, slowly getting used to the adjustments I needed to make to get by. It wasn’t like waking up deaf one morning all of the sudden. Not only did I find my way through, but I actually loved that my life was so peaceful. I didn’t know, until now, that was because I couldn’t hear.

I wish I had known what I was giving up by agreeing to this surgery. We talk about things like this in terms of side effects and recovery time and how much you’ll gain when you have your stapes replaced, which is all important and valid. But no one that I found ever spoke about what it’s like to lose your ability to find a quiet moment in a day.

I went to WalMart this morning. 9 am on a Monday morning, should have been empty. It was, for the most part. No crowds. No lines. No screaming children. And it was still unbearable. Outside, there was a flock of seagulls screeching. The cart made a wobbly, dragging noise the entire time. Doors beeped when I went through them. Every few aisles, people were conversing: store employees, other customers, and I could hear them talking. Worse, there are video screens all over the store, every couple of hundred yards, advertising some product or another; built in commercials, blasting at a volume I can’t ignore now but never noticed before. Bags rustling, freezers opening with a whoosh and sealing closed again with a sickly smack, metal clicking against plastic and feet scraping against the floor…

Leaving didn’t help much. More seagulls. Car noises. Getting into my house just to find that the heater makes a loud blowing air noise and the computer hums and the keyboard clacks and it’s all everywhere and it won’t ever go away again.

I’ll get used to it, sort of. Right now, what makes the everpresent sound harder for me is that I don’t have a sense of direction for it. It sounds as if everything is inside of my ear, even sound from the other room, so that the world is perpetually sitting on my shoulder and yelling at me. Eventually, my brain will sort that out, and give sound in my right ear the same sort of distance it has in my left. I’ll once again know how far away a noise is, where people are in the house. I’m not 100% certain about this, but I have to hope, because I can’t live forever with what I have now. This has to be temporary, because it’s too much, and I haven’t even done the other ear yet.

Poached Eggs with Hollandaise Sauce, on Savory Waffles (recipe)

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This week has been all about the 5 minutes of time I could scrape together before passing out again. This meal, which was our Sunday breakfast, was sorted out in a few minutes a day over the last couple of days. It takes less than 10 minutes to assemble if you have the pieces in place, and was deliciously filling without being heavy.

Thursday, I made the waffles. I had leftover corned beef and potatoes; not enough to make a meal for more than one person, but enough that I didn’t want it to go to waste either. I had been toying with the idea of savory potatoes as a base for Eggs Benedict — a favorite of someone else in the house, but something I’d never really eaten. Plus, I liked the idea of making these waffles in advance, and having them (frozen) on hand for a quick breakfast on the run or even a dinner… I used “pancake mix” in this recipe, which is any pre-mixed “just add water” kind of base, so that it would be as easy as possible for you to replicate. Doesn’t matter the brand. If you have a favorite waffle mix that you’d rather use, feel free to substitute it.

Ingredients:

1 cup soft cooked potatoes
1 cup diced corned beef (or other meat — try bacon!)
1.5 cups pancake mix
1 cup water
1 cup grated cheddar cheese
2 eggs

Put all ingredients into a large mixer, blend until doughy.

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Using your waffle maker, cook as usual. If you plan to eat them right away, go ahead and cook the waffles until they are crispy and golden brown. If you plan to freeze and reheat them, as I did, cook only until heated through and the edges are just starting to crisp up. That way, when you heat them again, they won’t be overcooked.

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Post Surgery Update: Day 4

(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.

#SFWAPro

Quick update: Post Surgery, Recovery Day 1, And a Publication

Yesterday I had the stapedectomy on my right ear, which I hope will repair some of my recent hearing loss. l am recovering at home now, and have a week off of work before my post-op follow-up appointment.

Getting strep a few days before I was due to go in for surgery was, so far, the worst part of this experience. I’m so lucky that I realized what it was in time to take antibiotics and be healed enough to actually get the surgery done… But I wasn’t sure they were going to let me do it until a few minutes before they wheeled me into the operating room. Not only did I have that stress, but since I wasn’t allowed to take aspirin, ibuprofen, or any cold medicine that contained either of those, I basically suffered through several days of feeling like I’d swallowed crushed glass, just hoping that it would be worth it.

The surgery seems to have gone as well as can be expected; the anesthesiologist did cut up my throat inserting the breathing tube, and I’ve been coughing up blood since yesterday morning. It’s not a lot, but it hurts, and worse — it shakes my head so hard that I get vertigo, can’t stand up.

But the vertigo passes. I have some tinnitus, but not more than usual. I’m exhausted, but considering the one-two punch of illness+surgery, it’s not a surprise. I didn’t wake up with any of the serious potential side effects: no facial paralysis, I’m not dead. My post-op care instructions include that I can’t lift anything, bend over, or even blew my nose, so me and my couch will be spending a lot of quality time together this week.

I am keeping a more detailed log off the experience, with lots of bits that will likely end up in some story, somewhere. Would you be interested in reading more in-depth about this process, or do you prefer the highlights only? Let me know in the comments.

Because a couple people have asked: yes, I do have medical expenses. Co-pay to the audiologist and ENT surgeon. Hospital fees. Medication. 8 days off of work. (Fortunately all of the doctor costs, including the big surgical fees, are covered by my insurance, once my $1000 deductible is met, but I still have to pay that.) If you’d like to contribute, click here, or use my PayPal address — same as my email: carriecuinn at the gmail. And, thank you. Big or small, anything helps, even if it’s just enough to buy my son a pizza so he is fed even if I can’t stand up to cook him dinner.

I’m planning to use this week to rest, and get caught up on Lakeside Circus (have you been reading us? You should!). I’m also doing some freelance editing, prepping for my next workshop offering, and hopefully some writing. Whatever I can get done while being basically immobile. I’ll let you know how that goes :)

In case you missed it, my poem “Myth of the Mother Snake” came out at Liminality Magazine this week! I’m so thrilled to be included in their Spring issue. Please do let me know what you think. Thanks go to Bryan Thao Worra and Don for being my first-readers on that poem, and to editors Shira Lipkin and Mat Joiner for buying it.

I appreciate that they kept the stepped formatting that I submitted it with. I rarely care about that sort of thing, but in this case I felt it enhanced the work a little more. I let them know that in my submission cover letter, and though of course I would have accepted it if they didn’t, it was a happy surprise to find they agreed.

Writing this has used up my energy, so it’s back to sleep time. I give it a couple of days before I completely hate this forced resting, by the way. Luckily, I have so many good books to read in the meantime. Feel free to leave suggestions in the comments, too!

#SFWAPro