You’d think I’d have the hang of this by now.

So here I am, 5+ weeks post-op, and swallowing is still a problem at times.  It’s only with liquids and smoothies, but I still have to remember to take smaller sips than I used to, and to tuck my chin and turn my head before swallowing.  I don’t know why that tuck-and-turn trick works, but it does.

In other news, these temporary rashes, or “evanescent urticaria”, continue to plague me.  My dermatology appointment isn’t until the end of October but I’m on the waitlist in the event of a cancellation.  I plan to message my dermatologist, of course, but I’m really hoping and praying I can get in soon.

One med gone

Based on yesterday’s bloodwork, my endo tells me I can stop taking the medicine that filled in for my parathyroid while it was recovering from surgery.  Being able to retire one med is a good thing!  She wants me to go back for more bloodwork next week as we continue to monitor my progress.

5 weeks post-op

Because we’re still tweaking my synthroid, my day started with another visit to the lab for blood work.  I’m sure my endocrinologist will let me know if we’ll make any changes this week or “let it ride”.

The Chief and I followed that up with a trip to the toy store, aka Sur La Table, to look for a coffee maker to replace the one that died.  We’ve been making do with a little 4-cup pot, which has been sufficient (I haven’t been drinking coffee now that I have to wait 4 hours post-synthroid to have any calcium) but it doesn’t have an automatic shut-off.  He ended up treating himself to one that has a built-in bean grinder.  That’ll make the house smell wonderful every morning!

As luck would have it, there was a coffee shop across the street, where I had my first latte in ages, along with a very nice chocolate croissant (aka chocolatine, aka pain au chocolat).  And yes, we each got an extra pastry for tomorrow.  It was a beautiful day for it, too - cool enough that we actually needed jackets when we first left the house, and a near-cloudless sky.

I’m starting to regain some semblance of stamina at long last.  Yesterday I managed 15 minutes on the treadmill (variable incline) and today I opted for the stairs going back to the car after our retail adventures and wasn’t the least bit winded, though my thighs did notice the incline when we got into the parking garage.  Not that I haven’t been taking stairs, but this was the first time I didn’t notice them.

Weird post-op stuff

My system is definitely different since getting my thyroid yanked.  First of all, there’s all the weird breathing stuff because of that paralyzed vocal fold.  I have coughs that sound like sneezes, or occasionally like sobs, just for variety.  Then there are the little inhales that sometimes rumble in my chest and sound like snoring or growling.  And we can’t forget the gasping inhale, though those are becoming less common.  My speaking voice is still weird - high, in a cartoony way, or mid-range and glitchy.

In addition to the dizziness that just started today, I’ve been dealing with “evanescent urticaria” - the here-again-gone-again rashes I keep getting.  My energy level continues to be low, to the point that I told the director of my next show that I won’t be able to be part of the design team after all. 😢  I thought about that one long and hard, but in the end I just couldn’t justify staying on when I can’t guarantee whether I’ll be able to do good work.

On the other hand, my arthritis has been leaving me alone, even the arthritis in my neck, the MRI for which is what got me started on this adventure.

Entering the next phase

Today was my first prednisone-free day in over a month, since the onset of that awful rash.  Hurray!

Today I also started my new, adjusted levothyroxine dose.  Not sure if it's the new med dosage or what, but I'm feeling a bit lightheaded again today.  The Chief and I are both hoping that fades, so that he doesn't have to drive me to the theater.  (Blithe Spirit has 4 performances this weekend.)

And I scheduled my Nuclear Medicine consult.  Don't know whether we'll schedule my radioactive iodine then, but at least things are moving along.

4 weeks post-op

The pace is slowing now that the rash is finally gone.  I still have a bit of itching, but it's nothing like as bad as when the rash was at its worst.  The incision is healing slowly but surely, though my surgeon recommends I get some silicone scar strips in 2 or 3 weeks and apply them over it.  Not that I care about a scar, but healing?  Yes, please.

Talked to my endocrinologist this morning.  We discussed adjusting my levothyroxine and calcium supplements as my body adjusts to its new normal.  I thought we'd schedule my radioactive iodine, but she's referring me to Nuclear Medicine for that.  She also told me they like to wait 3-6 months for that step, not the 6-8 weeks I'd seen somewhere.  There's a bit of prep for the iodine - 2 weeks of a low-iodine diet, a couple of injections, and a thyroid and whole-body scan.  Depending on what the NucMed folks tell me, I may opt for a November date to get it over with (as long as it doesn't run up against Thanksgiving), or wait until January, well after the holidays.  We're flying for both my sister's wedding and Christmas this year.  I wouldn't want TSA to turn me away at the gate because I'm still radioactive!

3 weeks post-op

Three weeks ago today the surgeon slit my throat and did his best to remove as much cancer as possible.  The incision is healing up nicely now that we have the rash under control, and as of today I no longer have a lift restriction.  The Chief still helped me load stuff into the car to take to a different theater.  (They're doing a semi-staged concert production and asked me to style wigs for 2 of the principals.)

My body still seems to be adjusting to its new need for synthroid, and I've got another 10 days of prednisone to get through, which may be why I still run out of gas so quickly.  That, and the fact that talking is gonna continue to be work until that left vocal fold heals.

I really appreciate how responsive my surgeon has been.  He's answered all my questions within 24 hours and sent me a message this morning checking up on me after yesterday's adventure.

False alarm?

I’ve been a bit short of breath since yesterday morning and inhalers and neb treatments weren’t helping.  I’d also started having swallowing problems again, after having none for a week or so.  So back to Kaiser urgent care I went today.  But hey, it’s been a week and a half since my last UC visit, so that’s an improvement, right?😄

They gave me my money’s worth - labs, EKG, CT scan of my neck and chest, palpating of the surgical site, and of course a lot of questions about how long, and how often, and so on.  The UC doc spent a fair bit of time on the phone with the ENT on call and finally decided that, because I hadn’t experienced any distress during the 6+ hours I was there, that this was probably just post-op recovery woes.

Among other things, the CT found some lung nodules, which the doc told me are “tiny”, not that unusual, and no cause for concern.  After my experience with these thyroid nodules, I’m not so sanguine.  I wanted to let my pulmonologist know about the scan, but apparently he’s no longer with Kaiser. 😢. A shame - he was a lot of help when I had a very stubborn asthma flare after my first bout of COVID.  I guess I’ll reach out to my allergist, both to tell him about the scan and to ask him to recommend another pulmonologist.

Poor Chief - he sat there with me, reading and listening to music on his phone until the battery ran down to 10%.  After that he started to get a bit punchy - “Hi, I’m Dr. Smartypants!” 😂. Well, it kept us entertained while we waited.  And waited…

Another tech week on steroids

 In June, the steroids were for the recurring sinus infections I'd been getting since the beginning of March, which made Patience tech week more stressful than tech week usually is.  This time, the steroids are for the rash that has been plaguing me.  I think the meds finally have it on the run, but the prednisone has my sleep cycle all shot to pieces.  Last night the Chief had to drive me to the theater because I felt enough out of it that I didn't feel safe to drive.  I ended up sleeping, soundly, in the car most of the way to the theater, so that was the right call.

Today I got up late, had breakfast, then went back to bed and slept another hour or two.  We both celebrated when I learned tonight's rehearsal has been cancelled so the lighting crew can replace many of the instruments.

The itch factor has finally dropped to only a 1 or a 2, though I still get occasional, random breakouts.  It's very weird - I'll get a new patch on a forearm or upper arm, which then fades after an hour or few.  However, I don't need to apply as much cream to get relief.  I also haven't applied it but once a day the past coupla days, thanks to tech week throwing me off.  I should probably go back to 3 times a day, or at least twice, just to make sure we have this thing under control.

Talking to "my" people as I'm wigging them can still be tricky.  Who knows how long it will be before that vocal fold is back in working order.  For now, I have a voice that cuts in and out, coughs that sound like sneezes, and an inhale for those coughs that still sounds wheezy.  The surgeon explained that my breathing is gonna sound weird because of that inactive vocal fold.  Oh, and the tremor from the prednisone is fun, too.  Good thing I don't have to help anyone with their eyeliner!  

 

Maybe the meds are *finally* starting to kick in?

The itching woke me up again today.  However, after the first round of meds and creams, the itch started to back off.  My face didn't look quite as inflamed by dinnertime as it does in these pics, and the itch is down to a more manageable level.  Given that I started the prednisone taper this morning that starts at 60mg, not the 40mg I'd been taking, that's not terribly surprising.  (I haven't figured out yet how to get these photos on the same line. 😖  Last night I wouldn't have been surprised to wake up with my eyes swollen shut but things seem to be calming down.

The Chief has been taking very good care of me:  fixing me eggs for breakfast every morning, trying to keep up as I figure out how to adjust to life on synthroid, helping me with theater stuff (climbing ladders in a storage bay, carrying things for me while I'm under my lift restriction, etc.), going to the grocery store for things we never used to buy (cottage cheese and canned fruit), and generally trying to help me recover so I can return to life as usual. I'll probably still ask for a little help with meals, maybe twice a week, but having such a supportive husband is making this whole business a whole lot easier!

   

"You're back *again*?!"

 This rash continues to spread and I continue to wake up scratching.  The Chief ferried me back to Kaiser (trip #4 in 6 days, for those of you is keeping score), where they gave me another 3 weeks' worth of prednisone and had me double up the Rx antihistamine I was given earlier this week.  They also recommended a stronger ointment to use on the rash except for my face.

The triage nurse recognized me; "Weren't you here earlier this week...?"  Yeah, I should just book myself a cot and a locker. 😵 

This is wearing me out.  I feel like this rash has me living at the urgent care unit, when I should be sitting around resting up.  (I actuallly did nod off while I was waiting for the doc.)  Having this persistent rash on top of the cancer is just adding insult to injury.  Or maybe injury to injury?  Anyway, this whole business of aging, with its concomitant system failures, is a system in drastic need of an overhaul!

Better?

The rash continues to spread (my face looks kinda scary now) but the steroids have finally kicked in, taking the itch from a 7 down to maybe a 3 or a 4.  It still woke me up this morning, but it’s been worse.  Talking is gonna be an effort for a while, but swallowing and yawning are back, and laughing no longer hurts.  For the first time since my surgery, I don’t feel the need to go to urgent care or even call the advice nurse.  Hallelujah!

Pathology report

This just in - both masses were cancerous, as I'd expected.  It's "papillary carcinoma, infiltrative follicular subtype".  The tracheal scrapings and lymph nodes removed were not affected - yay - but unfortunately, the surgeon was unable to get clean margins.  As a result, I'll be radioactive for a bit in a coupla months.  My endocrinologist will be the one who schedules that for me.

 

Back to Kaiser for a 3rd visit :(

 Started the new meds and cream last night.  Woke up this morning to find the rash was continuing to spread and had expanded onto my chin - oh just ducky. 😒  I got a video visit, but the doc told me he couldn't properly evaluate me that way; I'd need to be seen in person.  He also warned me that, depending on what they saw, they might need to send me to the hospital.  Bleah!

So I packed a bag, just in case, and the Chief drove me back to Kaiser urgent care.  Fortunately, at 3pm the ENT docs were still there.   The UC folks sent me up there to get my throat scoped; uncomfortable process, but learned that my L vocal fold isn't really working.  Not terribly surprising, given all the digging and scraping my surgeon had to do, but weird to see one vocal fold doing its fluttery thing while the other just sits there.  The ENT said that could take 2+ months to recover, which kinda lines up with what I found online.  That explains why my voice cuts in and out and tires so easily, and why a nebulizer treatment isn't as effective as usual - my lungs aren't the problem.  The UC doc (or was it the ENT?) did say a saline rinse could help.  I'll have to update the family SLP with this info once I get the pathology report back.

UC gave me a nebulizer treatment and a dose of steroids, which helped the rash eventually.  The itch is now down to maybe a 3 from a 7; I might actually get a good night's sleep tonight!  It no longer looks such an angry red, either, even if it has spread.  The bad news, though, is that the UC doc told me contact dermatitis rashed typically need 10-14 days to run their course!  The good news is that they sent me home instead of to the hospital.

I was amused when the UC doc popped in with the doc I'd seen at Sunday's visit - I guess that's what happens when you're a regular!  They compared notes on the state of my rash - had spread a good bit since Dr. 1 saw me on Sunday, but didn't look as red and inflamed. 

If you see me in the next week or so, the rash may still look pretty bad but rest assured it's not contagious. I may not be very talkative given that I'm working on only one vocal fold, so you won't have to worry that I'll regale you with my tales of woe. 😊

Making progress, and another Kaiser visit

Back to Urgent Care this afternoon but I was able to drive myself - no lightheadedness at all today.

The rash continues to spread, slowly but surely.  It looks angrier tonight than it did when I took these photos this morning.  I look forward to the day I don't have anything to log here.  When the triage nurse asked me.to rate my pain, I told her I don't have any, but the itching? That's easily a 7!

As luck would have it, my surgeon called while I was with the on-call doc.  They agreed this is an allergic reaction, and we're stepping up the meds - prednisone and a prescription antihistamine.  I also seem to have collected a case of impetigo, so I've got an antibiotic cream in reserve in case the other meds don't get rid of it. I sure hope all this works - it's gotten so bad that it hurt this morning when the shower water hit the rash. 😩

If Kaiser had a loyalty program…

 … I’d be in the top tier!  I’ve been calling their advice line pretty much daily since my surgery, and this morning the Chief took me to Urgent Care to figure out what combination of ointments to apply.  The verdict:  Aquaphor 3x/day on the incision itself, kenalog twice a day on the itchy area around the incision, and if I need the Benadryl cream, apply it at least an hour after the kenalog.  I can also take oral Benadryl as needed, although this morning’s dose really made me light-headed.

I just realized that I’ve probably been messing up my synthroid because I haven’t been waiting at least 4 hours to take my calcium gummies.  This is taking me back to last year, when the Chief and I both had surgery in the same week.  We were on different meds and our respective meds were on different schedules - what a complicated mess!  It took a friend close to an hour to figure out the Chief’s schedule.  This isn’t quite that complicated, but I can see I’m going to need to set reminders on my phone, at least until I get the hang of this new regimen.

One small (or not so small) mercy - I haven’t been having much pain at all.  The itching is so bad it almost hurts, but no actual pain since my first day home.

4 days post-op and a complication

 

Looks like another mouth, that took a pretty solid direct hit!  Little wonder the itching woke me up in the wee hours.  Turns out I'm allergic to the skin glue. The on-call doc recommended benadryl, both cream and pill, which I administered as soon as the Chief got home with them.  It's helping, though I don't plan to skip any doses today or tomorrow.

Three days post-op

Things have gotten quite itchy around that slash.  I ended up getting a Rx for an ointment to apply around but not on the area.  It even woke me up at 4:30 this morning, itching so much it almost hurt.  Between that and the congested, wheezy inhale, I wondered if I'd have to make the Chief take me to urgent care.

It didn't come to that but I may yet call the advice nurse, again, to see if I should be worried or just need to be patient. 

The itch goes all the way up to my jawline and down past my collarbone and out toward my shoulders.  That's a lot of area to slime with this ointment.  I may end up with grease stains on the V-neck shirts I bought for my recovery,  but oh well.

 

It was sort of a relief.

 The Chief and I have known SO many family, friends, and acquaintances who've gotten cancer, many of whom died from it.  Some of them (I'm look at you, Mom) have even had more than one kind.  The Chief's had cancer, too, so I was kinda wondering when it would hit me.  When the biopsy results came back, it was almost a relief; there's my cancer diagnosis - box, checked - and it isn't breast cancer.  I'm not feeling too great about it right now, of course, given what the surgeon found, but the prognosis for this kind of cancer is about as good as you could wish.

Post-op throat

 I had expected my throat to feel kinda raw and abraded because they would have to intubate me.  As it happens, because they both lubricate the tube and administer a local anesthetic, that hasn't been a problem.  Instead, it's been all the muscles in the neighborhood that are aching.  I saw a speech therapist last week who warned me that "swallowing will be weird" - she wasn't kidding!  Yawning is a bit of a challenge, too - my throat doesn't want to stretch for a proper yawn, at least not yet.

Things have been shoved around, pushed, pulled, rearranged (because of course there's no more thyroid taking up space), poked, prodded, and scraped.  My stomach is mostly settling down and I no longer have a headache (hangover?) in the wake of the chemical cocktail they pumped into me in the OR.  I also slept better last night - not as uncomfortable, less coughing, but still had some very weird dreams.

I find that I don't want to turn my head independent of my torso yet, or at least not very much, and my lungs definitely need their PT.  When I inhale through my mouth, e.g., prepping to cough, I wheeze in a way that the Chief admits he finds a bit scary. 

The incision is wider than I thought it would be, maybe because of all the extra cancer the surgeon found?  It's almost 4" wide, and purple, where the surgeon used a purple marker to indicate where he planned to make the initial incision.  Imagine if he'd used a red marker! 😄 

 Oh, it's starting to itch!  Unfortunately, I can't put anything on it to ease the itch until Sunday; for now, I just scratch around it and try to be content with that.