Awesome Timing, Thanks

I went and saw the new “physician’s assistant” fella yesterday. He first confirmed that Dr Walter is still my doctor of record and that everything will still go through him… but hopefully after this initial “getting to know each other” appointment (for which I’m sure he’ll have to confer with Dr Walter at least this time) he’ll be able to handle most everything while leaving Dr Walter’s time free to help patients that can actually still be helped, patched up, or even repaired. That’s where his time should go.

Thankfully though, I really like this guy. Dr Walter and I have a decade of history from me going to that clinic for the same problem… so, obviously, even starting to get new guy on the same page as us would be impossible in one visit. But that didn’t stop him from intently listening to everything I said, as well as already offering his preliminary thoughts and ideas about my condition and treatment. I don’t want to get ahead of myself, but the positive vibes were a pleasant surprise. I mean, it was really a crap shoot (what type of doctor I could have ended up with) but I should have known that their office wouldn’t hire a jackass when not a single one of them already there acts that way.

Okay, so that was the good part of the visit. Nothing has changed yet, but I told him that I appreciated having “new eyes” looking at the situation, and letting him know that I am willing to try changing some things up if he, Dr Walter, and I think that it could help with the problems which have slowly been getting worse over the months and years. I then began the walk to the front of the office to make my next appointment and hit the road, when I was told that Laura, the workers’ comp “saint” of the practice, needed to see me before I left.

She told me that my case manager contacted them and told them that I was non-compliant with my scheduled appointments, and that I was also non-compliant with getting my medications filled each month. Now, Laura has been there since the beginning with me, so she (like me) knew that what the case worker was saying was complete bunk. Before I could even say anything, Laura told me that she had already faxed more than sixty pages worth of documentation to them, to let them know that they are either full of crap and are trying to jerk me around again, or that they are incompetent. (My words, not hers.) I mean, how many times have I bitched here myself about how nearly every damn month I have to make multiple calls, multiple visits to the pharmacy, and often still I’m not “allowed” my medications until days after they’ve forced me to run out?

Based on what they are claiming, they are now only willing to pay for one doctor visit every three months – while certain medications that I take require me to be seen every thirty days. (And it sure sounds like their eventual goal may be to straight up “kick me out” or void their obligation to me.) So, this is what I have to deal with now. And I really need some dumb shit like this, right now, when my plate is already overflowing with stuff that is pushing my health and emotions to their limits.

But that’s what I’ll be doing tomorrow, gathering up all of the current information about whoever is my acting case manager, figuring out which of my attorneys handles this type of issue, and probably trying to figure out how to get records from my pharmacy – and maybe a statement from the pharmacy techs who know how I regularly get the runaround – and get everything in some kind of order, to where I can start making calls on Friday.

I had a good day today, and I do want to blog about it at some point, but I’m still furious about this. Yes, it’s all easily, easily refutable… and there’s absolutely no way that I won’t win if this gets forced into another IC hearing or actual court case… but the fact that I have to do it at all, and that they still seem determined to deny me as much of my treatment as they can. I don’t understand how any human could or would take a job like that, where if they complete their task or reach their goal, a person’s life is ruined.

If I keep talking about it I’m not going to be able to sleep again tonight, but that’s the gist of how my Wednesday went. I’m glad Genesee is still in town, because today I had to just pretend that yesterday didn’t happen… just for this one day, so that my brain wouldn’t have a meltdown from immediately trying to fix all of this. I already spent the entirety of Tuesday night through dawn on Wednesday wide-awake, sitting in bed with my phone, looking up countless things regarding my case and treatment, and sending them to the printer so I could compile and highlight them later.

When there is a reliable, well-documented, years-long pattern of delaying or denying a patient’s medication or treatment, when multiple hearings and court cases have already made it clear that the patient is legally entitled to all of it… even if it’s done in a way that technically isn’t in violation of their obligation – you’d still think it might reach a point where a judge would see that it’s nothing less than harassment, and I have to believe that one of that patient’s litigating attorneys would smell blood in the water at that point, so to speak. I’m not a squeaky wheel. Why do they want to push it to that point?

(Okay, tomorrow’s entry will be a positive one. I just had to let this out, for better or worse.)

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Checking In

Haven’t been able to shake this funk. 😕 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. 😔

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. 😟 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. 😏

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. 😳 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. 😬

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. 😣 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. 🤕 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. 🙏🏻

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. 😷💉😐 It’s difficult knowing that there isn’t really an “Okay, we’re done. You’re good.” with this. 😔 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. 😟

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. 😒 Next on the agenda, though, is my first full appointment with the new shrink on Monday. 🙄 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 back home I learned that Christina was gone. 😔

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

  • Pharmacy  /  monthly visit to jump through hoops for meds
  • Psychiatrist  /  intake appointment
  • Dentist  /  temp crown removal and permanent crown installation
  • Endocrinologist  /  injection #1 prior to 131 treatment
  • Endocrinologist  /  injection #2 prior to 131 treatment
  • FMC  /  nuclear medicine department for radioactive iodine (131) treatment
  • Home  /  (one week of isolating myself from the humans)
  • FMC  /  full body scan 7 days after 131 treatment
  • Psychologist  /  first “real” counseling session
  • Rehab/Pain  /  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. 😒

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 love finding any reason that they can to deny me treatment or medication. 😠 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.

“Customer Service”

Might as well continue my bitching into Tuesday. 😒 Had to get up really early for my appointment with Dr Walter… and everything was routine until he asked me if I would be willing to be seen by a new physicians’ assistant that they have added to the office. 😳😟 I think they actually added two other doctors as well… but like he and I were discussing, ever since the big changes that were made about six months ago they’ve been struggling to try and keep up with appointments, paperwork, insurance stuff, medicare stuff, workers comp stuff, etc.

So while I’m glad (for them) to see that they’ve added some auxiliary people that will help evenly distribute the workload, it’ll definitely take a while to get used to the new guy. 🙁 Dr Walter isn’t going anywhere, so if my condition changes he’ll be able to handle it, but that was his point… my condition has been relatively stable for a long time now, so my appointments are really just about prescription refills rather than treatment. 🤕 That’s why he felt like I was a good candidate to go to the new guy – freeing up Dr Walter (someone with a lot of seniority) to choose appointments with patients he still has a chance of repairing. 😏 And to be honest, it could be interesting to bounce ideas off of new guy – since on most days I still struggle to just reach “okay” … so fresh ears and eyes could help me in the long run.

After that, I didn’t really feel like going to the Social Security office to handle my insurance enrollment issues… so as soon as I got home I was on the phone again. 😐 I’m not sure why it took as long as it did, but just enrolling in the dental part of my Medicare Advantage plan took over a half hour. And for me, someone who gets super twitchy if I have to be on the phone for more than a few minutes, it may as well have been three or four hours. 😣

I ended up calling it a day around 3pm, even though there was still stuff that I could (should?) have made calls about. Couldn’t get through to the hospital again, despite definitely calling during business hours, and so far they haven’t returned my calls. 😠 That’s fine though… I’m fine just sitting here and waiting until another notice for those bills arrive, and another, and another. I mean, I’ll call again, but if they don’t seem interested in dealing with it, then I’m not gonna be terribly interested either. 🤷🏻‍♂️

Strangely, despite twitching out over the obscene amount of time that I spent on the phone today, I’m still feeling enough of a burst of energy that I’m gonna try to work on a few things around the house. I’ve got a couple of friends who have been hinting heavily that they’d like to come over, so I feel kind of obliged to make it look less like the house of a single guy and his white cat that’s in the process of being groomed. 😳🐱 But mostly I’m doing this stuff for myself, because the more organized and calm this place is, the more organized and calm it makes me. 😌

But after these crap days starting the week, I think tomorrow I’ll take at least half of the day off… maybe get my cameras organized and charged up, get the C64 Mini all updated, set-up, and hooked up. I dunno… Monday and Tuesday have me pretty grrr, so I really need to make tomorrow different.

Sing, Sing A Song

My injury that resulted in the c5-c7 disk removal / spinal fusion over a decade ago… it stole so much from my life. 😞 Not the surgery itself so much, but the resulting nerve damage that made my left arm rather useless. There are still days when I’m surprised by the discovery of something else “new” that I’m no longer able to do. 🙁 I should have kept a running list… but boy would that have been depressing to have everything I’ve lost, all in one handy notebook.

Well, my most recent neck “thing” seems determined to steal something from me as well. I’m still in the middle of the whole “cancer treatment” thing, with the first step having been the removal of the thyroid… and now while I’m waiting for the radioactive iodine treatment in a couple of weeks, in the mean time I can’t help but be a little bitter about a particular side effect of this surgery. 😠

I dunno… for all I know, this might not be something permanent – but considering that I’m about a month and a half out from the surgery, it’s probably gonna stick. You may or may not know, but music is everything to me. 🤨 Whether listening to it, playing it on a keyboard, crafting it via Amiga / PC tracker programs, or just singing in the car or even at karaoke back in the day. Well I’ve lost a big chunk of that passion, because I can no longer sing. 😟 At least in no way that I used to.

At first I just couldn’t hit the notes at all. Songs that I’ve sung out loud or in my head a thousand times… I now sound like any other shlub that might try to sing it at karaoke somewhere, to the cringes of the peanut gallery. 😒 With a conscious effort, thankfully I’ve been able to get some of my “pitch” ability back – but I’ve lost a huge amount of my higher range. 😢 I’m not sure if it’s because things got tightened up inside my neck, the same way the skin has on the outside (due to the new incision and stitches), but during those moments when I’m not hitting the higher notes – I can actually feel it pulling. 😣 It’s a difficult sensation to describe without the listener having experienced it themselves.

And yeah, I know… considering that I lost some of my range as a side effect of trying to free my body of cancer… I know that it probably sounds silly or greedy for me to be complaining about something that many people would see as frivolous, given the situation. 🙄 But seriously, when so much has already been taken from me, and singing was one of the few things that I just endlessly enjoyed, whether by myself or in front of people… it’s just another kick in the nuts that life has decided to send my way. 😡 “So… that one thing you’ve always loved doing? Yeah, well that’s about enough of all that.” Fucking awesome.

Meh… it’s not gonna stop me from singing, at least not when I’m by myself, so maybe, hopefully, things may continue healing in a way where I can get a little more of my voice back. If I would have known this was coming my way, I definitely would have recorded as many songs as I could before going under the knife. Years ago I recorded enough songs to fill 3 CDs, which I then shared with Mom and Dad and a few other people… but I never thought those would be all that I’d ever do, at least not until now. 🙁

I’ve never claimed to be a great singer. I’ve never even really claimed to be a good singer. It was more that I was good enough, and I recorded the songs that I did because I just love singing, and trying to sound like I love singing. 😏 I wanted people to be able to hear me doing something I loved, because of how it made me feel. Meh… it sounds dumb when I try to put my thoughts about it to words. 😕 Oh, and I don’t care if anyone thinks that this is all self-pity… because it is, and I think I’ve earned it.

I’m Tired, Boss

Nothing much going on around here… at least nothing good…

Went back to the dentist to get the last bit of my root canal done and was fitted with a temporary crown. A temporary crown which feels like it’s squeezing the life out of the little nub of tooth that it was mounted on. 😒 Jaw aches… head aches… I’m just hoping that the final version ends up fitting more comfortably than this one is. I’ve got to wait about  a week and a half to find out.

Shortly after that it’ll be time for the radioactive iodine treatment. That means in the next couple of days I’ll need to start my low iodine diet. I guess the thyroid tends to attract all the iodine that enters your body, so you basically want to starve it for a couple of weeks so when the radioactive stuff is introduced – if there are any thyroid / cancer cells left, in theory they’ll be destroyed. 😐 I’ve chosen not to google too much about all of this, so I’m not sure exactly how the full scan will go afterwards, or how nervous I should be.

But in preparation for that I went grocery shopping today and picked out some things that are on the “okay” list. I don’t really eat much anyway, and the stuff that I’ll be allowed to eat isn’t that bad… just different from the normal canned or boxed stuff that I usually eat. Fresh meat, salads, fresh vegetables, meh… it’ll be fine. Just more dishes than usual.

My friend that was diagnosed with lung cancer a little less than three years ago… she entered hospice care over the weekend. 😕 She actually had to go into ICU for a bit, but they got her stabilized enough to return back home. It just is what it is. And what it is, is scary… seeing what has happened to someone that was “fine” and just went to the doctor for a cough three years ago, having never smoked, having never had any serious health problems… and yeah… fast forward to today, three years later. 😞