Final (maybe? hopefully!) bit about the parathyroid/thyroid drama

Yesterday, I had my follow-up with my surgeon. She took the Steri-strips off of my incision site, and I had been thinking, "Yay! No more neck coverings!"

Well, two things: 1) I cannot let sun get on the scar at all, and I am only to use Aquaphor on it 3-4 times a day for the next two weeks. After that, I am to use silicone tape for 6-12 MONTHS to protect it. Yikes! Scar care is definitely a long game! 2) That area is SO SWOLLEN. As my regular endocrinologist said, "Your tissue is mad!" So for now, I'm wearing false collars and scarves. And it's hot. Let's all feel very sorry for me. Thank you.

And I have one more thing to add regarding the whole "getting diagnosed and surgically healed before I knew there was a problem" angle:

I followed up with my surgeon yesterday, and my endocrinologist today. Of course, everything that was taken out of my neck (one parathyroid, my entire thyroid, and several lymph nodes) was biopsied. The 9 millimeter adenoma on the left lobe of my thyroid was papillary thyroid cancer. Thing is, there was another adenoma, 4 mm, on the right lobe of my thyroid that no one had visualized (I had multiple ultrasounds, the nuclear Sestamibi scan, and an accompanying CAT scan that went all the way around to the back of my neck.

That smaller adenoma also tested positive as cancer.

The parathyroid and the lymph nodes all tested negative for cancer, and the surgeon said she wasn't sure exactly what happened, but that thyroid cancer is very slow-growing, and also maybe the inflammation from the Hashimoto's kind of created a "shell" around my thyroid so nothing spread.

So, there we go. I'm cancer-free before I even knew for sure that I had cancer. Kind of makes me glad my parathyroid started acting up, because otherwise, who knows when we would have found this.

Also, I'm grateful for my surgeon and her confidence that I needed to remove my entire thyroid, even though a support group I am in suggested getting a second opinion. I trusted her and she was right. She saved me another surgery down the road. This hasn't exactly been a nightmare, but it's not something I care to repeat.

I'll test for antibodies again in October. They should all be gone by then, assuming that there is no remaining cancer. If anything ever comes up in the future, I might have to get radioactive iodine treatment to kill any microscopic thyroid material left in my neck... but I'm planning for that not to happen, so I haven't even looked up what that involves. 

My remaining parathyroids appear to have stepped back up and are maintaining my calcium levels. I test that and my thyroid hormone levels in July.

Continue to feel very fortunate and grateful.

The Rich Get Richer

One last thing before we get off of the subject of my glandular heave-homent:

This whole thing started because we had insurance (have, until the end of this month). Since we have insurance that fully pays for annual check-ups, I've gotten bloodwork done every year for the past 5 years. There have been some things, like low whole blood, that required some looking into but were determined to be nothing. 

But in January 2023, I had high parathyroid hormone level as well as high calcium. Those two things both being elevated is an automatic diagnosis of hyperparathyroidism, and the only way to treat it is surgery. 

Getting referred to a good surgeon led to the suspicion and diagnosis of Hashimoto's disease, and all of that resulted in my having my thyroid and one parathyroid removed.

What had already happened was that I have experienced some bone loss (would be characterized as "osteopenia" if I were post-menopausal), and that I was frequently eliminating cloudy liquid as my poor little kidneys tried to flush the excess calcium out of my blood.

What could have happened was hypothyroidism, and any of several more advanced autoimmune disorders like Crohn's, Grave's, or lupus. I also could have had permanent nerve damage at my extremities due to wonky calcium levels. I could have fractured my hip. 

But I didn't.

We knew what was going on because I had access to adequate, thorough health care. Through James's work. Which he doesn't have now.

I went most of D's life without insurance and, consequently, we only went to the doctor's office when there was something overtly wrong. But in this case, if I'd waited until possible symptoms of thyroid disease had presented themselves, my body would have definitely been worse for the wear.

So I'm grateful.

I don't know what's going to happen in terms of our insurance after the COBRA stipend runs out. Tech employment is rough right now. But I do know that everyone deserves preventative care (in addition to acute care, obviously). Why is that a controversial ideal?

Recovery

First full day back home. I took a nap this morning from 10:00-10:30 but was otherwise pretty normal, energy-wise.

James filled you in pretty much... he just left out that I had a parathyroid gland removed, also. The surgeon said that when they took the left anterior parathyroid out, that my parathyroid hormone level dropped into the normal range, and my calcium dropped to below range but not zero. This means that my 3 remaining parathyroid glands appear to be functioning properly, even though they were dislocated from their former home (my thyroid, which James already told you I had removed).

I'm waiting to hit the Day Three wall (I've heard days 3-5/6 are the hardest in terms of recovery) but so far am feeling mostly normal, minimal pain in terms of having a sore throat, and though I walked much more slowly this morning that is typical, I did manage to make it 2.5 miles.

My follow-up with the endocrinology surgeon is a week from tomorrow, when I'll get my Steri-Strips removed. Until then, I'm camouflaging my neck because there's some blood and nobody wants to see that. But I can tell under the strips that the cut is tidy and should heal to almost invisible. Apparently, I have a "nice neck crease" where the incision will hide (read: wrinkles and fat). 

Probably my biggest struggle is going to be not to get into my head about the fact that I now require synthetic thyroid hormone to live. If we have some big societal breakdown or something that prevents the production and movement of medication, I'll literally shrivel up and die. So wish me luck, losers!

Super grateful for all of the help we had to make this week go more smoothly: 1) Thanks to Indeed for laying James off so he didn't have to rush back to work but was able to be a lot more involved in the minutiae of taking care of the house and taking care of me. 2) Gracias to my parents who took us out for dinner the night before my surgery, and then spent the night in a nearby hotel so they could be here at 6:45 AM to hang out with Mal while we went to the hospital. 3) Sincerest appreciation to Kristen, Mal's friend Kona's mom, who let Mal go home for a sleepover after Tuesday group. 4) And also danke to my sister for showing up the day after surgery to bring me back home, and for hanging out and visiting. (She ended up having a surprisingly full day when, after she finally returned home, there was a tornado in Temple and she and Ken and the boys went up to help Hannah and Aaron secure their apartment and start to clean up a bit. Everyone's safe, which is the important thing.)

Laura rejected her thyroid

And it wasn't that big a deal.

Well, so far.

We woke up ridiculously early this morning. For some of us, it was more ridiculous than others.

Laura wasn't planning on going for a walk (she's getting really bored with those), but she decided it would help her feel better later.

I wasn't planning on cleaning litter boxes. But I decided that more sleep would help me feel better later. So I skipped them.

D got a notification that they had to be at work early in the morning. So they didn't clean the litter boxes, either. I'm sure they would have otherwise.

But that really meant that we had to sit around waiting for Nana and Pappy to show up with nothing else to do.

Laura wanted to drive, so we'd to the surgical center on time. We both pretended that it was because she already knew where she was going.

We wound up sitting around in a little nook to ourselves for a few hours while we waited.

All around us, people were freaking out. One guy with an impressive voice read off headlines. If he practiced, he could probably get a job on the radio. Or maybe as a voice actor.

Later, their preacher joined them to pray about whatever was going to happen. Or somebody from their church. It got real religious for a while.

I had flashbacks to my Dad's funeral. With that preacher proclaiming that you can't find any comfort or solace without Jesus. The same preacher who relegated me and Khrys to the middle rows with the nieces and nephews, since we didn't count.

I also had flashbacks to all the time I spent in the hospital with my dad. There wasn't any question that he was dying. We all knew it. I think everyone except Denise admitted it.

It's funny the way this sort of timing works and sneaks up on you. I got really familiar with hospitals as a kid, when Mom spent so much time in them. They were probably a lot scarier then than they are now, but they weren't anywhere near as terrifying as the were when she was a kid. And, before that, they were basically just places where people went to die.

So it's weird.

I wasn't worried about Laura at all.

If I hadn't spent so much time before this in hospitals, I probably would have been completely freaked out and panicked.

But we both trusted her surgeon to be a professional who knows how to manage a difficult surgery because she's done it thousands of times.

My jerk brain now wishes that I'd given her crap and asked whether I could have helped show her where to cut, because that's what men do. Why does my brain do this?!

Man-stupidity aside, they told me that I could expect to spend the next several hours alone. So I went out to eat.

I suppose I should have stayed in the waiting room, freaking out about what was going to happen and how it was all going to turn out.

But I've been doing this since I was a little kid. Surgeries themselves don't really scare me. I know they can and do go wrong. But I trust medical professionals to mostly get it right.

Shortly before she went in, Laura noted that she thinks she was pretty safe from a nick in the bladder. Apparently that's what killed Pappy's mother. He was Mal's age at the time. We spent a little time being horrified about the prospect of me raising Mal the rest of the way without her (at least I assume that's what she contemplated).

So I went out for food. I'd done my best to fast with Laura before the surgery (though she was right: I had some water when I first woke up, when she couldn't).

I was halfway through my meal when I got a text message that she was almost out of surgery. I asked for a To Go box and rushed outside.

The surgeon called. I'm pretty sure she told me all the pertinent details. All I heard was that Laura had done fine and everything was good.

And that I didn't need to rush my meal. So I went back to finish my food (and realized that I'd splattered tikka masala all over the book I was reading when I got called).

 I hurried back to the hospital and fought with people for a place to park. I got another call in the middle of that, while I was halfway into a parking spot. The other person who'd been shooting for that spot got really irritated with me, but I really didn't care.

After all, this story isn't supposed to be about me.

I'd sent text messages to both Laura's dad and my mom to keep them updated about her progress. I called my mom once I got back to the hospital.

At that point, she'd been in Recovery for a while. They were trying to find a room for her. I chatted with Mom for a bit. She's really excited about the baby quail that are everywhere. She's been waiting to see them for at least 30 years.

Considering all the time Mom has spent in surgery, and all the time I know she has spent waiting on other people in surgery, I really appreciate her story about the quail.

It was a really nice distraction from worries that didn't amount to anything.

At least not yet. This is one of those "Your life has changed" sorts of days.

I'm really glad that the amount of change is so minor. Doctors know how to manage this one. It isn't a big deal.

I'm just glad that it wasn't anything drastic.

Bits and Pieces

Hello, fellow Americans (and any other nationalities, honestly... all are welcome)!

Yesterday was Mother's Day in the US, and my local family came out to my house to visit. We had a nice afternoon hanging out, and I didn't have to do anything because James and Mal picked out snacks, my Dad brought food and plates, and it was just a fun time all around.

Today, I had an early appointment at a radiology office, not realizing that I was getting some nuclear imaging and a CAT scan. Woo hoo. Fun times. Before going into the imaging chamber, I got an IV of radioactive material! About two short hours and I was done. What a psychic workout, though.

First, the radiologist was trying to keep my elbows in place (the camera automatically keeps 1 inch between itself and a body, and she didn't want me moving my arms and making the camera back off). It was kind of like swaddling, and it was comfy enough... until she started lowering the imaging plate to within 2 inches of my nose and my claustrophobia kicked in. I pulled off the sheet and promised that I would keep my elbows tucked under my own power. She offered to try something different and I told her that if I felt restrained, there was no way I could do it. So we kept my arms free and everything was relatively fine after that.

I had 3 different 5-minute scans, during which I could not move. I was kind of restless after those, but THEN it was time for a 25-minute scan! That one did a number on me, as I tried to relax and maybe even nap since I'd gotten less sleep than usual the night before. But my body kept bringing me back into the moment by suddenly detecting an itch in my right ear canal. Then making me hyper aware that the muscles in my leg were clinched and I needed to relax. Then noticing that my pinkies were falling asleep from my crossing my fingers, which was how I was keeping my elbows from flopping around, so I couldn't really move them but I also couldn't forget about how much I wanted to move. However, when the machine beeped that it was over, I'd thought we were only at the halfway point. 

After the long scan, I had to go into a CAT scan machine still without moving because it had to line up with the previous images. The tech had to "stitch" the pictures, and I was trying not to say anything until there was a natural break, but by then I REALLY needed another visit to the restroom (one of the symptoms of the hypercalcemia caused by hyperparathyroidism is that my kidneys are always trying to jettison calcium, thus pulling moisture from my body and causing me to need to evacuate a minimum of hourly). Fortunately, she was able to let me go before we did the 3 final 5-minute scans.

Shortly after I got home, James had deja vu from last spring, when Indeed announced that it was laying off 8% of its work force. This time, James didn't keep his job, and he said he's mostly numb about it, but I think it will end up being a good thing. Morale has tanked since last year's down-sizing (the first mass layoffs Indeed had ever done), and he hasn't been happy for a while. 

Classes and extra-curriculars are shutting down for the summer. Mal has been out of Wednesday classes for two weeks. This Wednesday, we're going to to to the splash pad where we had his birthday party. I'm probably going to plan an activity every Wednesday that I can, just to avoid general malaise (although I love being home). Since Mal is enjoying public transit so much (we took the bus to Urban Air last week and had a great time), I'll see what I can find that is nearby convenient stops (we had to walk almost a mile between the stop and UA, but it was fun).

Thursday is Mal's last homeschool open gym until fall. And our Tuesday group is always lighter in the summer, with people traveling and dealing with summer custody arrangements.

But Mal's looking forward to YMCA movie-making camp in about a month! It'll be his first sleep-away camp, and I hope it's as magical as Camp Coral (a SpongeBob series), which is why I think he was interested in camp in the first place.

This last thing I'm going to tell you about... well, if you're squeamish or just don't like TMI, then stop reading and we'll see you next post. 

If you're still here, allow me to say: I'M TOO OLD FOR THIS! And by "this," I mean continuing my fertility. I, too, had deja vu today. We were in Montreal exactly a year ago (sigh) and the last full day we were in town, I took Mal to an indoor playground. We spent a LOT of time on public transit to get there. On the bus ride, I felt a kind of "swoosh" feeling that was weird. When we got to the playground, I went into the restroom and there was blood EVERYWHERE. I was wearing a menstrual cup (which I've used without leaks since 2010), AND period underwear. And still, my khaki slacks were absolutely drenched in blood.

I had a stain stick and pretty much used it up. It kind of diluted the visible blood, though it definitely looked like I'd peed myself. Oh well. I wasn't going to end the day early and travel an hour back to the hotel room just to change. I moved my stuff from a cloth seat to a leather chair and just dealt with it. It was fine; I didn't make a mess anywhere but on myself. Then Mal and I went to McD's before heading back several hours later.

(It's the next day).

Since then, I've had one overnight situation which hadn't happened since I stopped wearing pads in my early 20s. I determined to remember to change out IMMEDIATELY before bedtime from then on, and have done so.

But yesterday, as I used the restroom prior to my eternal scan situation, I realized I'd started my period. I'd gotten up in the dark so hadn't seen any clues at home. But by the time I made it to the radiology clinic, I suppose I'd been free-bleeding for about two hours. I didn't have on my period underwear (my periods are extremely irregular -- thanks, perimenopause! -- and I didn't get the usual two-day warning of hormone-induced stress this time. 

I had my cup with me as always, but had to do the whole procedure knowing that I'd bled straight through my jeans. Ehh. Got home, changed, was fine the rest of the day.

Then last night, I got the same feeling as on the bus a year ago. Got up and there was just blood EVERYWHERE. I don't understand what or how it is happening, but I'm over it. Cleaned up, went for a walk, could tell I was leaking. Had to change and clean up AGAIN when I got home.

Friends, I am almost 52 years old! This nonsense needs to stop. At least I will probably be at least mostly finished by next week. I don't want to have to do the pad/mesh underpants combo I discussed with the surgical nurse.

Parathyroid Update

Can't believe it was more than three weeks ago when I wrote that last entry! Time flies...

Since I posted that, we had a visitor for a couple of weeks (D's friend), Mal's school finished up, and temperatures are letting us know that summer is on its way.

I also did go see both my endocrinologist as well as the endocrinology surgeon. The endocrinologist was very empathetic about my frustration and said that she has concerns about medical care in Austin. There are just more people than there are doctors to meet the need. She said, "I'm here every day..." and then told me to come back in 4 months, but then the first available appointment was in 6 months. She did add to my notes that I was frustrated with how long this process is taking.

Then a bit later, I went to see the surgeon. She asked to ultrasound my neck, and immediately asked, "Has anyone told you that you have Hashimoto's disease?" I told her that I had not gotten that diagnosis, and she said that just based on what my thyroid looks like, she's pretty sure that I have it. She did an u/s on herself and showed me what a "normal" thyroid gland looks like compared to mine (it all looks like TV static to me, but I trusted her), and then she sent me off with lab orders to check some thyroid antibodies that would support her hypothesis.

I did the bloodwork and have a final different kind of scan scheduled for a week from today. The bloodwork came back... well, I have Hashimoto's.

I feel SO lucky. I know people who have Hashimoto's, and they often suffered for YEARS before getting a diagnosis. As far as I know, I'm asymptomatic, though the surgeon said that it was possible that I'd been having slow-onset symptoms and they're just normalized.

She did mention that I might feel better after surgery when my calcium level is corrected, and I might not feel any different at all. But that you get parathyroid surgery for the long-run, to avoid bigger problems down the road. So even if I don't feel magically more energetic, with no GERD, etc. that it's still the right move to avoid kidney damage and further bone loss.

My surgery is in two weeks, and I'm excited to get it over with!

Meanwhile, life goes on pretty normally...