Author: Carrie Cuinn

Carrie Cuinn is an author, editor, bibliophile, modernist, and geek. In her spare time she publishers other people's work, listens to jazz, watches documentaries, cooks everything, reads voraciously, and sometimes gets enough sleep. You can find her online at @CarrieCuinn or at http://carriecuinn.com.

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

What I’ve Read This Week (with links)

I read a lot of news, articles, and essays, but rarely remember to share the ones I find interesting. I’m making an effort to be better about that. This week, I read…

Fiction:

Ken Liu’s “Cassandra“, at Clarkesworld (review forthcoming)

Non-Fiction:

On New Orleans’s Mardi Gras Indians: “A Once-Guarded Tradition Spills Open In New Orleans’ Streets” by Eve Troeh (NPR)

  • Looks at the evolution from the black Indians as mysterious strangers, to the recent focus on community and youth outreach programs. Includes 5 min podcast. Short, but it might intrigue you enough to read a little more. Wiki, Houston Cultural Crossroads, Mardi Gras New Orleans, are places to start, and photographer Eric Waters has some beautiful images here. As a corollary, you might also be interested in the Baby Doll dance clubs and the Skull and Bones Gang (both articles via Nola.com). Also, this article on Big Chief Bo Dollis’s passing includes video from his funeral, and music from other Indians.

When KKK Was Mainstream” by Linton Weeks (NPR)

  • Less than 90 years ago, the KKK was considered a major part of life and culture in America — so much so that they sponsored charity events, weddings, funerals, baseball games, and parades — even though they were outspoken about their racist beliefs, and had over 4 million members on the rolls. They walked around the streets in their robes and regalia. They were considered “just another club”; accepted as they enforced as “whites only” spaces the whole of a community.

About the Forbidden City and other Asian-American Nightclubs: “These Nightclub Entertainers Paved The Way For Asian-Americans In Showbiz” by Heidi Chang

Charlie Low opened Forbidden City in 1938, and from exotic dancers to comedians to acrobats, he made sure the club had it all. It was even featured in major media outlets, including Life magazine. But that didn’t shield performers from the mostly white audiences’ racial taunts. According to music writer and broadcaster Ben Fong-Torres, “Even while they were entertaining — not unlike the blacks who entertained in New York City at the Apollo [Theater] and the Cotton Club — they would still be subjected to racism. So even though you are the stars of the show, to which these paying customers have come to attend, they still feel superior to you and make … racist remarks to your face, or shout it out from the audience. And I think that was pretty difficult for most of these entertainers to take. But as [singer] Larry Ching said, ‘I had to. Otherwise, I wouldn’t be in the business.'”

“Twenty-One Dresses” by Pari Dukovic, Jessamyn Hatcher (New Yorker)

  • A look at what it takes to preserve antique clothing — in this case, from the illustrious Bell Epoque fashion house “Callot Soeurs”. Includes photographs.

Interviews:

Alejandro Jodorowski, “A Hundred Years Is Nothing” by Camilo Salas (Vice.com)

 

Reviews:

Juan Vidal’s review of the English translation of The Dead Mountaineer’s Inn by Boris and Arkady Strugatsky (NPR)

  • I loved what Vidal has to say about the book, which sounds as if it’s perfectly nestled in the center of that Venn diagram that describes my love for SF, literature, and detective stories. I bought it immediately! (Right now, Amazon has the paperback on sale here, and if you buy it that way, you can read the beginning online for free.)

T-7 Days Until Surgery: A Countdown of Thoughts and Concerns

In a week, I will get up before dawn, leave my sleeping son, and drive out to the hospital. He’ll be watched over, woken up, and then put on the school bus around the same time as I will be wheeled into the surgical theater. If I’m lucky — if everything goes right — I’ll be awake before he has his lunch. I’ll spend a couple of hours recovering, and get to go home around the time that he gets off of school.

I had my pre-surgery phone call today, the one where someone asks you, in a dozen different ways, if there’s any reason to suspect the surgery might kill you. This is standard operating procedure*. The questions cover a huge range of diseases you may have ever had, allergies you have ever been afflicted by, with the vague, “Is there anything we didn’t cover?” at the end so they and you are certain you’ve said it all. No, I don’t have cancer. No, I don’t have epilepsy anymore; I grew out of it when I was a kid. No, I’m not allergic to anything.

And I’ve just remembered that I’m somewhat allergic to bees, but forgot to tell them.

I did let them know that I have a health care proxy, someone I trust to keep me alive by whatever means necessary, who they’ll contact in case of an emergency. He and I have a Darth Vader pact, where we’ve agreed that living is more important than being made entirely of flesh, provided our brains still work pretty well. I know that he’ll make the right choices, should the unthinkable happen. “Unthinkable” in this case meaning the thing that of course I’ve thought about, we all think about every time we’re told that we’re going under, under anesthesia, under the knife. (Though in my case, there’s also a laser.) Unthinkable means that I don’t wake up from the anesthesia, or I wake up broken in some devastating way, and my person has to be called. And someone has to figure out how to explain it to my son.

I can’t think nothing will go wrong. That’s when things do go wrong. But what I’ve been telling myself, and now I’m telling you too, is that this particular surgery doesn’t tend to result in death. Almost never, as far as I can determine from my extensive late-night Googling. The possible bad-effects** include, in order of most-likely to least:

  1. Mild to moderate vertigo (less than a week)
  2. Debilitating vertigo (less than a week)
  3. Mild to no improvement in hearing
  4. Cancellation of surgery, because they discovered another problem when they opened the ear
  5. Permanent deafness (dead cochlear nerve)
  6. Long-term vertigo (weeks to months)
  7. Requires additional surgery
  8. Bell’s Palsy (facial paralysis on 1/2 face due to a cut nerve)
  9. Severe infection/death

My surgeon tells me that it’s the first five that are most likely, including permanent total deafness. The others have a less than 5%, down to less than .1%, chance of occurring. I’ve been given a prescription for steroids to take the week after surgery, because they think that the people who go completely deaf in the opened ear suffered extreme inflammation of the affected area — basically it swells up so much it crushes the Organ of Corti. The steroids should combat that.

I don’t mind that it will probably take several months for my hearing to come back as far as it’s going to, if it is going to improve. I don’t mind that I’ll probably have vertigo, feel awful, need to spend the week I have off for recovery on actually recovering. (There’s a part of me that is annoyed I have to take time off of work for something other than writing/editing/conventions, but we’re ignoring that part right now.) They’re cutting into my head, destroying my seized-up stapes with a frickin’ laser, and replacing it with a metal copy. Essentially, I’m cyborging out, and I understand that it will take a little time to heal.

I don’t so much like all of the things that could go wrong.

I want my person, any of my people really, in there, holding my hand while the surgeon works, making sure I’m okay… Which isn’t an option.

What I can do is what I only ever do, in situations like these: I looked at my options, I chose to have this surgery, I accept and am being open about my concerns, but I can’t let it change that I still need to go in next week, and take whatever comes from it. Once you’re informed and prepared, all you really can do is move forward until there’s something new to react to.

Questions, thoughts, comments all welcome.

* Dear Nemesis: that pun’s for you.

** The worrying ones should be called “bad-effects”, I think, because “side-effects” is accurate but unintended consequences really only matter when they’re bad; we mostly worry about rashes or heart attacks, not developing perfect pitch or the uncanny ability to get discounted car insurance.

#SFWAPro

HOW TO FAIL AS A WRITER

1. GIVE UP IN DESPAIR, AND STOP WRITING. FOREVER. PERMANENTLY.

2. Or, keep writing but:

  • Stop trying to improve. Focus on racking up publication credits, or sales, or reprints, rather than whether this story is noticeably better than the last one.
  • Refuse to listen when your writing is criticized, regardless of the quality or thoroughness of the critique or review. Only listen to your fans, the people who tell you how great you are, and suspect — quietly, to yourself, or loud and indignantly to your loved ones — that your critics just didn’t “understand” what you were “going for”.
  • Stop sending your writing out for feedback (either to alpha/beta readers before you consider it done, or publishers afterward).
  • Stop trying new things, whether it’s different genres, different styles, different markets, or different character types.
  • Complain, constantly, that your work isn’t selling enough. Post on social media that people you know, your friends and family, “clearly” don’t love you enough because they’re not forcing your work on enough people. Publicly dismiss or insult markets or editors who rejected your writing, regardless of why. Insist that your kind of writing — novels, short stories, genre, stories with a certain kind of characters, whatever — must not be marketable anymore, since you’re not profiting enough from it.
  • Tell yourself you’re a failure, every day, regardless of what anyone else says about your work. Use  your certainty that you’ll never be any good as an excuse to take out your sad/bad/angry feelings on the people who care about you most.
  • Ignore your editors, rebel angrily against them, argue with every suggestion, or decide that okay fine, this one change you’ll make and then never submit to their market again.
  • Be desperately impatient. Demand respect, sales, an answer to every email you send a prospective editor… if you think you need it, expect to get it immediately.
  • Stop reading other people’s work. Stop reading anything. Stop learning.
  • Stop living your life. Only write, and forego family, love, school, hobbies, friends, experiences — the sort of thing one generally writes about.

If you’re not doing any of the above, then don’t worry. Keep writing. Keep growing. Keep submitting. You’ll be just fine.

#SFWAPro