Focusing On The Positives

Went to my follow-up appointment yesterday with the endocrinologist after my full body scan. I dunno, I guess it was mostly good news, but it wasn’t the “all clear” that of course anyone would prefer to hear. πŸ˜• But honestly, the chances of a doctor saying something like that are probably pretty slim anyway – since the last thing they probably wanna seem like they’re doing is handing out “guarantees” when it comes to something with such serious potential consequences.

The Negative: The scan did show a few tiny areas that lit up, meaning there’s some remaining thyroid cells there – as they had absorbed the iodine radiation and blew their cover during the scan. πŸ”¬πŸ‘¨πŸ»β€βš•οΈΒ Also, there’s no way to determine if those thyroid cells have cancerous cells in them as well… it just confirms that thyroid cells are there, and that we’ll need to periodically keep an eye on them. πŸ˜’

The Positive: The tiny bits that lit up were where they should be, where my thyroid used to be, meaning that none of those cells had migrated to any other locations where they could cause different kinds of trouble. The radiation that made those cells visible to the scan also serves to continue killing and shrinking those cells, so even over the next month or so they should continue to decrease in their already small size.

You can think of the surgery in the same way as someone trying to carve a hunk of fat off the edge of a steak before grilling it. Someone like me, I’d want to get as much of that fat cut off as possible – but at the same time you don’t wanna accidentally cut away good, non-fat, steak meat. 😏 Same thing with my surgery. The surgeon tries to cut away all of the thyroid, but not at the expense of accidentally cutting away non-thyroid meat. 😳 I guess it’s not terribly uncommon for tiny bits to be left behind because of that logic.

It won’t be for quite a while, but next year I’ll have to have an ultrasound of that area, to see if those cells appear to have grown. And since thyroids don’t grow back, I’ll assume that would be a bad thing. So at least the next “next step” isn’t stopping my meds and getting dosed with radiation again. ☒️🀒☒️ That tells me that while there is reason for concern and monitoring, it’s not of the “oh shit” variety where one of the most extreme measures is the first measure taken.

So, like I said, I guess overall it was a good result. I mean, there’s plenty of ways where it obviously could have been worse, but it’s still shitty that my first radiation didn’t kill offΒ all of the thyroid cells – because there’s no way that this won’t be something that floats around in my thoughts more than I’d like it to. πŸ˜’ I guess all my other recent lab numbers are good though, and I still feel like I’m gaining back more energy with each day that passes, so there’s that as well. I just wish that was the only thing that was going on with my neck.

So, yeah… πŸ€·πŸ»β€β™‚οΈ

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Nuclear Medicine

Had the same lady as last time give me the radioactive iodine dose today. I’m not sure if they all act this way, but she’s fun… not intentionally, but in the way that she makes it feel so dramatic. 😏 And I get it, she works in that department every day, so a person’s gonna want to keep as far away from all the radioactive stuff as possible, so I don’t blame her. πŸ‘©πŸ»β€βš•οΈΒ …Β πŸ₯’πŸ’Šβ˜’οΈΒ Β πŸ€’Β It also has the side effect of making it seem like this pill is reallyΒ going to be doing something, whatever that something may be.

Before they even bring the pill in, she had me go through a practice run – having me put my hands exactly where they need to be, telling me how to get the pill out of the container without touching it or anything else, and then how to gtfo while having to pass near as few people as possible. Of course once the lead container is opened and the pill is out, she stays as far away from it and me as possible – but, probably just from habit, that’s mostly how she acts even through all of the tedious paperwork and talking beforehand.

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Don’t mind how dusty my entertainment screen is (or the custom commands 😏), but I’ve decided to take this as a sign… this was the first song that played (at random)Β in the car as I left the hospital parking lot. (Video Link: Back to Life – Hailee Steinfeld)Β I’ll even give credit to Mom, since I was talking to her on the way in, asking that if she was able to give any help guiding the medicine during the process this morning, that I’d be happy to take it. 😌 Oh, and they remarked how shit my thyroid levels are (in a good way, for the dose/scan anyway) and it’s no wonder I feel like utter shit and fall asleep all the time. So, there’s that. πŸ€·πŸ»β€β™‚οΈπŸ˜Ÿ

Still can’t start up my meds until after the scan, and until after the doctor has reviewed the results to make sure that they “came out okay” for lack of a better term. It’s a typical long test where you have to lie still in a tube for about 45 minutes, so there’s always a chance there could be some sort of blur or error or something, to where they’d wanna do it again in a few days or whatever. 🀨 But with any luck, by this weekend I’ll be on my way “back to life” at least in as far as my thyroid and energy levels are concerned. πŸ€πŸ™πŸ»πŸ™‚

Unfortunately, I’ll have to avoid stuff likeΒ this until I’m less radioactive. 😟 Wish she could understand.

Creeping Toward The Finish Line

I figured I better get on here and make an entry while I’ve got the juice to do so. I know I said I wouldn’t bitch after doing that weed spraying outside the other night, and I’m not doing this to bitch – just to update… 😏 but cripes, that little bit of work messed me up somethin’ fierce. πŸ˜“

Overheated, energy sucked away, yet even with my full compliment of evening meds I laid awake all night, until about 9am the next morning. πŸ˜’ I got a couple hours sleep at that point, but still feeling exhausted I actually took that day’s evening meds and went to bed at 7pm. πŸ™πŸ»πŸ€·πŸ»β€β™‚οΈ Had to be at the hospital for labs the next day, so I didn’t want to take any chances that it would be another sleepless night.

The whole night followed the routine of falling asleep for a couple hours, then waking up for one… lather, rinse, repeat. By the time I was actually able to wake up enough to get my day going the next day, I had spent a total of 15 hours in bed 😳 yet woke up feeling more drained than when I originally went to bed the night before. It’s amazing how screwed up my body has become, from just missing that teeny tiny single thyroid function replacement pill each day, and obviously I haven’t hit the bottom yet.

But I made it to the hospital, got my blood drawn and labs started, and on the way out I actually ran into a friend in one of the hallways. She was on her way to see one of her family members, but I was so out of it I barely even realized when she waved as I passed her. She looked like she wanted to be there about as much as I did, and the way I almost just walked past her, I had to comment that we were like “The Walking Dead” just lumbering past each other. πŸ§Ÿβ€β™‚οΈπŸ˜ Not in any sense of the seriousness of why I was there, but more that I was just oblivious and drained and grumbling to myself in my head, to where I passed literally two feet from one of my friends and almost didn’t even notice.

But the past 48 hours have made me toss away (for now, anyway) that urge that I always have… that I need to do something useful or productive each day, no matter how shitty I feel. Yeah, F that. I gotta be realistic, because with this shit there is no “mind over matter” that will allow me to pull energy from some mysterious reserve. πŸ˜• It’s really okay though – because now that it has proven itself to me, that there is no fighting against it or whatever… that’s just how it’s gonna be until I can get back on the thyroid meds. πŸ€·πŸ»β€β™‚οΈ It’s still indescribably awful… but like I keep reminding myself… it’s temporary.

But just so people aren’t concerned, I am still able to drive, so if there’s an emergency or I need to get food or whatever – Lancaster has plenty of drive-thru joints that I can go to without leaving the car… and if I really need anything beyond that I can always hit up Toni, or Genesee – who has reminded me that she’s still got plenty of people around here that would be willing to help out if needed. I mean, it won’t come to any of that (at least I don’t think it will) because as long as my labs come back the way they want – I’ll get the radiation dose next week and will only have to make it through that following Thursday.

Heh… how lame. πŸ™„ Sitting here, happy that I had enough mental/physical oomph to write this. πŸ˜πŸ€·πŸ»β€β™‚οΈ

I Have My Reasons

Still hangin’ in there, still waiting through this process… 😟 of which the next step will be Monday, when I’ll get (what should be) my final lab work done before they decide if my levels are where they need to be for the radiation dose the following week. πŸ’‰πŸ˜¬πŸ“‰ I’m more anxious about the test than I am the dose later, simply because there’s a chance my levels won’t be right – which would mean going even longer without taking my thyroid meds, until they are. 😐 Without elaborating, I really, really don’t want to have to do this a day longer than I absolutely have to.

Unless it’s unavoidable I’m pretty much just staying at home and trying not to move around too much, to keep from throwing everything even more out of whack. I can’t fake my way through feeling okay right now, so staying at home lets me feel how I feel, protects me from anything that might make it worse, and protects others from having to see me like this, acting how I actually feel. πŸ₯Ί My “game face” is out of order. (I haven’t even been on Facebook for days and days, and the last time was to just let everyone know I was okay. I really hate how this has been affecting my interactions (or lack thereof) with friends and family.)

And I don’t blame people for being concerned, or not knowing how to react, when the topic is cancer and there’s still more “unknown” than “you’ll be fine” at the moment. But this current craptacular phase of “bleh” isn’t (likely) caused by anything cancer related, but is actually due to not being able to take the thyroid meds that I need. But to everyone else, I’m sure it looks and feels as if cancer is kicking my ass, which leads to all sorts of difficult and crappy emotions.

Toni and Shannon invited me out for a bonfire last night, and in my heart I wanted to go… but I wouldn’t have been able to conceal how I felt, physically or mentally, and I honestly didn’t want to be a buzzkill on their evening – which is what I likely would have been. πŸ˜’ If it turns out that the doctors weren’t able to remove all of the cancer, or if it has spread or changed or anything… that’s when I’d be more willing to let people feel bad for me, to treat me differently, etc. I do feel like hell right now, but I would feel like it would come across as “crying wolf” – since even though I know why I’m sick, that’s not how everyone else is gonna see it. I reassure people that I’ll let them know if there comes a time when they truly shouldΒ be concerned or worried for me, so I hope they know I mean that.

Meh… anyway… see what I mean about my mood? The same way I ramble about it on here now and then, I just didn’t wanna end up doing that to them last night. (Or to anyone, really…) Instead, thanks to Shannon texting me again this morning to let me know, they all had a good evening. Sharing lots of happy memories and stories about Mom, while still commenting on how it doesn’t seem real, how it doesn’t seem fair, and how as we all get older – how it’s getting harder to escape all of this type of bleh. Having me there, in my condition, certainly wouldn’t have helped to change that opinion.

But with any luck I’ll get to be one of those surprise cases in the future, where we’ll all be sitting around together, upset at whatever injustices we’re seeing or experiencing, but then someone will be able to say “But hey, you had cancer and you’re still here and fine now… so there’s always hope…” πŸ™‚πŸ€·πŸ»β€β™‚οΈπŸ™πŸ»

Something Like That

This heatwave that we’re currently going through… it’s a pretty good way to explain how I’ve been feeling over the past few days. Just go outside, walk around your property for about 15 minutes, then stand there a while… and that’s basically how I’ve been feeling each day all day. Again, not bitching, just trying to describe it in a way that people can understand.

Thankfully I’m almost half way through the process, so at least there’s a light at the end of the tunnel that I can look forward to. No matter what results I get, at least I can get back on my thyroid meds after the scan has been completed. It makes me feel bad for folks who have suffered with thyroid issues all of their lives, because the constant nausea, overheating, and dizziness… it’s no joke. Not thrilled that it has been made crystal clear that this will indeed be a medication that I’ll be taking for the rest of my life though.

I’m a cheap-ass, so I usually wouldn’t do this, but last night I turned the thermostat all the way down to 68 when I went to bed. I knew I’d be sleeping at least part way into the day and the house would heat up quickly, but despite it staying that cool in the house – I woke up early and completely drenched in sweat again. (Also… gross.) That’s why I mention how far along I am in the process… because if I didn’t know that there was an end to this, it would be some scary shit.

I’ve been drinking a lot more water, so the muscle spasms and dehydration hopefully won’t become an issue. It’s pretty shitty though, that the insurance industry has decided that this is an acceptable thing for patients to go through while preparing for their second radiation dosage. The alternative way, staying on your meds and just getting two injections before the scan… that costs several thousand dollars, so I guess you can’t blame them for trying to find somewhere to cut costs in what has likely been a very expensive surgery.

Again though, knowing that this is a temporary thing for me, it really makes me feel for those folks who don’t have insurance at all, and even for the people that do but have a chronic condition that still isn’t covered by their plan for whatever reason. As with most things like this, it’s something that we don’t think much about until it starts to affect us personally. So, yeah… still feeling super awful… and I feel like it’s continuing to slowly get worse, but I’ll be good as long I just keep reminding myself…

“It’s only temporary. It’s the lack of meds, not anything more scary. You’ll have more answers soon. Just (n) more days and this will all be over. Consider yourself blessed that you’ve made it this far. Plenty of other people have it worse than you, and it’s not temporary for them. Yeah, it sucks… but don’t be a pussy. It’s only temporary.” etc…

I’m trying to stay positive. I need to stay positive.

Checking Off Boxes

Typical “workers comp, beginning of the month, get my scripts filled” day today. Three different calls to the pharmacy, issues with my information in the computer, problems with certain ones not being approved… same bullshit as usual, except due to the incorrect information in their system I even had to stop in myself, with receipts and printouts and crap from last month. The folks that work there are great. It’s never the people there that I have a problem with… and after my visit we think everything is now updated, correct, and in process of being authorized – so maybe sometime today I’ll actually be able to pick them up.

I had to be out today anyway, so stopping in to get all this stuff sorted out wasn’t a big deal. I mean, I actually feel kinda bad for them – with how much of a pain in the ass “my case” is for them each month. It makes me wonder if any pharmacies have ever decided that certain customers’ situations were just too much work, too many calls, and too big of a PITA – and just told them to take their business elsewhere. ‘Cuz I can see how they could feel that way about me, if they weren’t such understanding and helpful folks.

But at my other stops, along with having several vials of blood drawn, we’ve started getting a lot more things set in stone. I’ve now got dates (if not exact times, yet) for the next blood draw, the administration of the radiation dose, how long I’ll need to stay away from people (which included rearranging another unrelated doctor appointment), when the full scan at FMC will be, and then the followup with my main thyroid doctor after all of the results are back and interpreted.

It’s surreal… how this is such a “big deal mind fuck” thing for me as I’m going through it, yet I’m just one of many. There are enough people needing this kind of treatment that once a week, every week, it’s radioactive “dosing day” for thyroid patients at FMC. But for whatever reason, even as you’re out in town, seeing other people doing whatever… it’s easy to feel like you’re the only person going through this shit, while actually we probably pass by people each day who are going through the same thing or worse. Working in nuclear medicine, giving the doses… I can see how that job could start feeling pretty heavy after a short while.

Once More For Good Measure

The bulk of my current thyroid treatment has been set up. Blood draw, three weeks without any thyroid meds, limiting iodine intake in my diet for that whole time, another blood draw… then the hospital (if the results of the second blood test allows it) will schedule a time for me to go there for the iodine radiation pill again, with the full body scan about a week later. Once everything is said and done (and only if there are zero issues along the way) I’ll be spending a little over a month without my thyroid and without the meds that replace its functions. And no, I’ve got no intention of googling to see how bad it might get.

Same as last time, I’ll have a protocol that I will have to follow for the week after I’ve taken the pill. No contact with anyone for the first few days, no contact with kids or pregnant women after that… washing everything I touch, keeping my distance from the cat when possible, using plastic utensils and paper plates… all that sorta fun stuff. Only this time I have no idea how I’ll physically and mentally feel due to being off of the thyroid medicine for so long. The next month or so will be an adventure.

Meh… there was more doctor stuff today, plus I’m likely gonna be radioactive when I’m supposed to have my next WC doctor appointment, so I’ll have to figure that out… but I just don’t have the mental energy to really keep at it this evening. Found out a couple of sad things with some other friends… I dunno, this day just ended up being pretty crappy. I’m gonna try to get some sleep and try to start fresh tomorrow.

I’m glad that at least this stuff is all on track now and we’re moving forward, I guess…