The Other Stuff

TRIGGER WARNING: This entry is gonna cover some of the other depressing shit that has also been filling my thoughts and influencing my mood recently. But I think it’ll help to explain why when it did hit me, about Mom being gone gone… why it was so easy for it to knock me down and keep me there.

About a year ago my best friend Jim lost his mom to cancer. At the end of last year, Brianna, another of my closest friends, lost her mom to cancer. And Christina was more than just “Bri’s mom” to me… she treated me like family. Rick, a classmate of mine, has been fighting cancer for two years now, and rarely posts to Facebook anymore, which seems like a bad sign. Then on the first of this month, anotherย school friend, Stephanie, died in her sleep from unknown and absolutely unexpected causes. Her oldest son turned 18 just two days later. And then today, my “cousin-in-law” Gloria lost her sister Wanda to cancer as well.

Jim’s mom was in her early 70s, but Christina was only in her early 40s, Rick is my age, Stephanie was only two years older than me, and I think Wanda may have been barely into her 50s. And Mom’s best friend through the entirety of her adulthood, Cecil… she passed away within the year as well. I’m actually sitting here afraid that I’ve neglected to mention someone, because it seems like every direction that I turn – sickness and death is what I see, and in many cases – in people far, far too young for most to even think it’s a possibility.

(Oof… this is gonna be a downer of an entry, that’s for sure…)

And of course, having cancer myself… or at least having had cancer (fingers crossed)… all of the stuff mentioned above doesn’t exactly do a lot to put my mind at ease. A long life before passing… that is something that hurts, but we understand it. People dying at my age or younger, from things like lung cancer when they were very vocal non-smokers… those are the ones where it starts to make less sense. And then ones like Stephanie that are there one day, making posts about her dog and her son’s upcoming birthday, then *poof* … simply gone the next. No rhyme or reason, and I’m not good when it comes to shit like that.

But for my stuff, I did get another appointment with my family doctor at the beginning of this week, tried to sum up all of the things I’ve been talking about here, and told her that I’m not really comfortable with what (to me) feels like a lack of concern or urgency once my thyroid removal and radiation treatment was completed. I’m not being neglected or anything… but after the surgery, radiation, and scan – other than the thyroid guy getting my levels right via medication, nothing else has happened or was scheduled to happen until July. I realized that I’m not okay with that. “You have cancer. We cut the cancer thing out. We think we got all the cancer. See you in half-a-year.”ย Christina also got the “we think we got it all” speech after her first surgery as well (I was there) so… umm… no. Not good enough.

It would be another thing if I honestly just felt great, and all these other things were just spooking me, but that’s not the case. Without going into details, there are things that just feel “wrong” for lack of a better term, and since I’ve gone with the “flashy” insurance this year I would be dumb to not metaphorically pound my fist on the table and ask for a little more. So that’s where I’m at now… the start of “a little more” phase. Tomorrow I’m seeing someone regarding my come-and-go, sometimes excruciatingly painful back problem… and, thankfully, with the lab being in the same building, my primary care provider has ordered an assload of blood and urine tests to not only hit on the regular “physical” type stuff, but cancer indicators as well… so I’ll do those right after the back guy.

So yeah… I’ll admit that with all of this stuff on my mind, I’ve essentially disappeared as far as my friends would describe it. At least in person, I mean. One, it’s hard to want to go out and do anything fun or visit with anyone when my brain is so full of this shit… and two, more than half of the time I just physically feel too crappy to even consider it. Now that it’s going to be looked into with a little more detail, I’m hoping that with good or at least encouraging results I’ll be more likely to spend at least a few days trying to act like everything is fine, and hopefully trying to start living my life again.

I’ve been out to see Dad a few times in the past month and a half, but when it’s hard to make myself get up and do anything even on good days – I know that I’ve not been visiting as much as I should or as much as I want. It’s hard to explain “I just can’t.” to someone, when it’s hard for you to even understand yourself. I can’t remember the last time I’ve opened my e-mail app, but I’m gonna try to at least start doing that again. My biggest problem is that I’m not exactly some cheery ray of sunshine right now, and I’ll probably struggle to come up with e-mails to Dad that are any less depressing than this particular blog entry. I guess that’ll force me to really think about each day, or couple of days, to find the little good (or at least “okay”) moments that I’m sure are there. But yeah, that’s the plan for now…

(And I’ll try to limit the depressing topics here in the blog for a while after today’s posts. Wish me luck.)

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The Opposite Of Reassuring

This is the first time I’ve experienced this, probably because I was rarely sick when I was younger, so I don’t think I ever had more than one doctor that I would have regular appointments with… but regarding some of the things with my current condition, I’m getting conflicting diagnosis/treatment advice from two of my doctors. ๐Ÿค”๐Ÿ˜ In more ways than this I’m still a kid, so when I go to a doctor I listen to what they say and take their word as gospel… assuming that they truly know what they’re talking about, and are offering me what is definitely the best diagnosis and treatment plan. ๐Ÿคท๐Ÿปโ€โ™‚๏ธ๐Ÿ‘จ๐Ÿปโ€โš•๏ธ But I guess as with almost anything, people often end up with differing opinions. Sometimes differing quite a bit. ๐Ÿ˜•

Things have been less than ideal with me for a couple of weeks now, and this week I went back in for a couple of different appointments to discuss it. I tend not to bitch about it unless it’s really bad, but these past few days… on Wednesday I woke up early, took a short nap in the afternoon, and after waking up I wasn’t able to go back to sleep for 30 fucking hours. ๐Ÿ˜ณ Doctor appointment number one wasn’t much fun, going in at the 24 hour point… I mean, I wasn’t even sure I was gonna be able to make it there and back… but at least it wasn’t like when you take your car to the shop so they can fix a rattle, but the rattle doesn’t happen. ๐Ÿ˜’ So at least Doc got to see when it can be really bad, and in a way I appreciate when that happens.

I dunno… I’m being kind of vague because I don’t really like talking about it in a lot of ways, so back to the point – I’ve got two doctors who essentially completely disagree with what the other is saying and doing, and I’m not sure exactly what to do with that. ๐Ÿ˜Ÿ First reaction is to trust and believe that doctor who isn’t saying the scary things, but that may be the doctor who isn’t holding anything back. ๐Ÿคท๐Ÿปโ€โ™‚๏ธ Then I try to think about “what’s in it” for each of them, and even that doesn’t really help.

But in the next couple of days I’ll have to decide who I want to roll with, and that will decide how potentially fucked up my next few months could end up being. ๐Ÿ˜ Gah… I know… vague. I don’t want people to worry.

Oh… My Scan / Blood Tests

I guess I never got back on here to update about my follow-up appointment with the endocrinologist. ๐Ÿค” Before the doctor even came in, the pre-doctor person took my blood pressure and asked me if a student and intern could join the doctor when he came in to talk to me. Meh… what do I care? Sure… all are welcome, all are welcome… ๐Ÿ˜ย Gotta let the young people learn so they can fix the old people like me in the future.

He’s an interesting guy… doesn’t seem bothered to convert “data” into user friendly word blurbs for the average schmo to understand, but that’s actually okay with me. ๐Ÿ‘จ๐Ÿปโ€โš•๏ธ I’d much rather have a shitload of numbers and charts than a generic “You seem fine.” or whatever. ๐Ÿค“ And with four tubes of blood, and more than four different comprehensive tests – I was surprised to hear him read off all of the numbers while also saying that almost all of them fall within the appropriate range for someone who is getting better. ๐Ÿคท๐Ÿปโ€โ™‚๏ธ

And then the full-body scan, which looked for glowing remnants of thyroid tissue that had absorbed all of the radioiodine 131 or whatever it was… this one is more subjective than objective, since it’s looking at an image rather than something that produces numbers against a chart. ๐Ÿค” But on the scan, he said that he saw nothing that indicated that there were any stray thyroid cells left in my neck, which also means that if the cancer truly started in the thyroid and hasn’t spread to anywhere else… then it’s pretty good news, eh? ๐Ÿ™‚

He did make sure that I understood that even though the results of the scan seemed ideal, that it doesn’t mean “Woohoo! Cancer free!” of course. But it does mean that as of right now I’m in pretty good shape, so when I go through my next round of treatment in about five months, I’m starting off in a better position than a lot of folks that have had the same surgery as me. But yeah… five months from now… ๐Ÿ˜ณ

This next round of treatment is actually going to be worse than the first. Something to do with having the thyroid medication in my body for so long, so I’ll have to actually stop taking it for at least three weeks before they can even consider moving on to the next step. ๐Ÿ˜’ Several more blood draws, another round of radioactive iodine treatment, another full scan… and at that point, if the results are the same as this last one, they can feel pretty confident about saying that I’m cancer free. I mean, as much as anyone, even a doctor, can really “declare” something like that. ๐Ÿ˜•

I’m sure it’ll be one of those deals where if I’m good on the next one, then we’ll probably wait a year until we do it all over again… I dunno, I’m just assuming at this point, but you’d figure that each time all this fuss comes back as “Looks good.” they’d let me wait a decent bit longer before we start at the beginning with the treatment and testing. So, yeah, pretty good news… I just wish I physically felt better than what I do. ๐Ÿ˜Ÿ Seriously, the way I’ve been feeling over the past few months, I’d have put money on the results coming back with something concerning. But I’ll take the good news and try not to dwell on it too much. I’ll just put this one behind me, and when it’s time to worry about round two, that’s when I’ll start worrying about it.

Anxious

I’m not sure how I feel about the weekend falling right before New Year’s Eve. ๐Ÿ˜Ÿ I think it’s actually going to work out better for me this way, since I’ve already got a January’s worth of medical appointments on my mind, but I can’t even really go about changing my insurance information or anything like that until after the first of the year when the new plan kicks in. ๐Ÿคจ So I’ll have at least a couple of days to start planning who I need to contact and when, and I might even get a couple days after that since some places might be closed on Monday and/or Tuesday. I’ve just got a lot of upcoming shit… I wanna hit the ground running.

I think I’m gonna have Cassi down for the night tomorrow. She can’t stay on New Year’s Eve since she has to be at work early early, but it would still be nice for her to stay – since not only has it been a little while since she has, but also because it might also be a little while until the next chance – depending on how my month goes and how I’m feeling during any given stretch. ๐Ÿ˜”

I’ve also decided that I’m going to let her take my Wii and games back up home with her to give to Junior. I can’t remember the last time that I sat down and played any of my games, let alone any of the games on that system that’s almost a decade old now. I could sell it I guess, but I’d hardly get anything for the lot of it… might as well brighten up a kid’s day a bit, eh? ๐Ÿ™‚ I’ll probably wait until she’s here to start finding all the bits and bagging it up… with the way I’ve moved stuff about since I last played, it’s hard to say what’s where.

But like I’ve described regarding my friends before… sometimes it’s just nice to have the company, because not only does it provide time to chill and (hopefully) clear the mind of “the now” for a while – something that’s always needed – but it also helps to encourage a little more productivity, since we’re both essentially able to pat each other on the back for our respective jobs well done. ๐Ÿ˜

I’m certainly not looking forward to 2019, so a couple more days of “nothing” and some company to distract is probably exactly what I need. So I guess I do know how I’m feeling about it.

Checking In

Haven’t been able to shake this funk.ย ๐Ÿ˜• Started with that shitty low-iodine diet, then the self-imposed house arrest so I wouldn’t unintentionally expose anyone to radiation, and even now after the scan the other day I’m having a hard time bouncing back. And I was only hoping to bounce back to “meh” rather than “okay” or “good” since I know those two options are unavailable to my brain right now.ย ๐Ÿ˜”

It’s not even really about my own stuff… it’s just tough knowing that Mom has been having bad days recently, and knowing where things are eventually headed.ย ๐Ÿ˜Ÿ It’s not even a conscious choice… but I have a hard time attempting a good mood when I know Mom’s going through things that certainly won’t allow her mood to be that great. And like I’ve mentioned, it’s not just her… my friend Christina just passed, another couple of friends are still fighting different types of cancer as well, dealing with my stuff, worrying about Mom and Dad… it’s just hard to break out of the “bleh” that I feel for all of those things, even though I know nobody would want me to be “bleh” on their behalf.ย ๐Ÿ˜

But anyway… my scan… I think I may have mentioned that I really didn’t know the details before I went in, although all of my assumptions were correct. I don’t dare google anything about thyroid cancer, because I’m sure that I’d accidentally expose myself to horror stories that would make me stress more than I already am.ย ๐Ÿ˜ณ But the imaging machine looked like an open MRI for the most part, although not only did it scan in that traditional method, but there were parts during the process where the entire thing would slowly rotate all around me as I was lying there.ย ๐Ÿ˜ฌ

I didn’t have to get into a gown, and only needed to remove my keys, wallet, belt, ring, etc. The most difficult thing was lying flat on my back for an hour.ย ๐Ÿ˜ฃ Whether I’m sitting (usually on the floor) or sleeping (either flopping around or in one specific “good” position) I rarely maintain a posture where I’m completely straightened out and flat. Thankfully the machine made little noise, and nothing even close to the anxiety inducing buzzes and thunks of a damn MRI machine. So all-in-all it wasn’t as bad as it could have been.

But it sounds like the scan was just a scan, since all of the current treatment had been ongoing since the week prior – as the radioiodine 131 was flowing through me and into any stray, dying thyroid bits that remained after the surgery.ย ๐Ÿค• The scan basically just documents any little glowing specks… at least I hope that specks are all that’s left… then in several months I’ll have to do it all over again, and the results then will be compared with the scan from the other day.ย ๐Ÿ™๐Ÿป

I do have another appointment scheduled with the endocrinologist in a little more than a month, where I’ll have to do all my bloodwork again so they can check all of the various levels that indicate how good of a job they’ve all done to this point.ย ๐Ÿ˜ท๐Ÿ’‰๐Ÿ˜ It’s difficult knowing that there isn’t really an “Okay, we’re done. You’re good.” with this.ย ๐Ÿ˜” They’re not able to tell me that I’m cancer free, because even if the scans show zero specks, it’s just one of those things that a person has to live with, have regular tests for, and if specks are found again in the next scan… then the cycle will start all over again.ย ๐Ÿ˜Ÿ

I’d say that I get a break from worrying about all of this for a while, but I don’t know if there could be something in the recent scan that would make my doctors go “Ahh, shit…” and require me to come in for something else before my already scheduled followup.ย ๐Ÿ˜’ Next on the agenda, though, is my first full appointment with the new shrink on Monday.ย ๐Ÿ™„ I’ll certainly have a variety of things to tell her about, which make me the way that I am right now.

Inescapable

My brain and body have definitely been on pause today. Thursday night into Friday afternoon was a rough chunk of time… going over to say goodbye to my friend Christina with a ton of family around, then a couple hours sleep before heading to the hospital at 6.5a for the radioactive iodine treatment, and shortly after I got backย home I learned that Christina was gone. ๐Ÿ˜”

We knew it was coming, and we were all there the night before because we honestly thought it would happen that evening – but she held on for one more day. It was so nice to be around all the family, many of whom I hadn’t seen in a good while, and I even met her biological dad… who was a really kewl old d00d. We all tried to keep the vibe as positive as possible for each other, but of course it was still really sad. I wasn’t even going to go over, feeling like it wasn’t my place, but Bri reminded me that I’m just as good as family – and that of course I was welcome and wanted there.

Meh… I don’t really wanna talk about that anymore. My thing at the hospital took over two hours, although most of that was pre-treatment lab work, having three pages of precautions read to me, and of course the signing of all sorts of documents. Once they opened the lead-lined container and used tongs to get the pill out to hand it to me, it was literally a minute until they were shuffling me to the door. They really want you to just gtfo once you’ve got the radioactive vibe.

The lady that did it all, you could tell that she was used to it… because even before the pill was in the area, she would still do things like asking me to place my ID on the tray table so she could grab it, rather than me handing it directly to her and risking actually touching her. And boy, once that pill was out and in my hand, she backed across the room until I took it – and as she guided me to the quickest way out of the building she reminded me to stay at least six feet away from her. Good stuff, eh?

I didn’t have any nausea or sickness as side effects, but it did make me have a funny taste in my mouth… and I unintentionally fell asleep that afternoon from about 4p until midnight – but that was as much from the lack of sleep the night before as it was the medication. I have to stay on this low iodine diet for a few more days, I’m supposed to not be around kids or pregnant people at all for a week, and six feet away from anyone else… and poor Maven, when she wants to sit on me or lay next to me, I have to put her down on the floor at the base of the recliner – but I make her a little nest in the blanket and share the space heater with her, so she’s okay as long as she’s close to me. She hasn’t left my side since I got home… pretty sure she senses the “bleh” I’m giving off.

Just hoping I don’t irradiate her too much until it’s out of my system.

The Rest of My Month Looks Fun

  • ใ€ฐPharmacyย  /ย  monthly visit to jump through hoops for meds
  • ใ€ฐPsychiatristย  /ย ย intake appointment
  • ใ€ฐDentistย  /ย  temp crown removal and permanent crown installation
  • ใ€ฐEndocrinologistย  /ย  injection #1 prior to 131 treatment
  • ใ€ฐEndocrinologistย  /ย  injection #2 prior to 131 treatment
  • ใ€ฐFMCย  /ย  nuclear medicine department for radioactive iodine (131) treatment
  • ใ€ฐHomeย  /ย  (one week of isolating myself from the humans)
  • ใ€ฐFMCย  /ย  full body scan 7 days after 131 treatment
  • ใ€ฐPsychologistย  /ย  first “real” counseling session
  • ใ€ฐRehab/Painย  /ย ย monthly WC appointment

Spent most of this morning on the phone, trying to wrangle all of my other appointments around the iodine treatment schedule – since that’s the one that is the most important, and the one that effectively removes a week of possible scheduling time from my life.ย ๐Ÿ˜’

EDIT: Just got off of another call with Dr Walter’s office. We’re now trying to figure out how much of a pain in the ass it’s going to cause… me being seen by his PA rather than directly by him, because Dr Walter is my “physician of record” when it comes to anything related to my workers comp claim – and they loveย finding any reason that they can to deny me treatment or medication.ย ๐Ÿ˜  This sounds like it will be a work in progress, and we probably won’t know what the negative side effects are until they happen.