Living With… Stuff: 27 April 24

I’m scheduled for another PEG tube replacement because the current one – and the one that got installed back in March – has been giving me fits, causing me a lot of pain and to the extent that it’s been interrupting my sleep.

The short version is that my MIC-G tube will be replaced by a MIC-KEY low-profile tube. The current tube is too long and it doesn’t help that, apparently, thanks to the cysts in my kidneys, they didn’t have a lot of room to place it other than where they did – and seeing it on the scans they took was kinda cool, a bit startling and more so when it appears that the internal anchors for the balloon… didn’t fall off into my stomach so I could poop them out and the doctor suggests that they might be what’s causing the hard lump where the tube goes into my stomach – but she also said that since I’ve had chemo and radiation, a surgeon isn’t likely to want to go in there and get the internal anchors out.

Which is fine because I’m not of a mind to have surgery unless I really need it. The end of the tube where I flush things and get fed through is… heavy and tends to get hung up in my undershirts or just gets to moving around which is, apparently, causing the “rubbed raw” area of the stoma – yes, it’s a stoma and just like when I had the trach – because it’s not only swinging around but it’s pulling the tube in and out. The doctor blew my mind by grabbing the disc and… pressing it back down against my belly and I was like, “Wait – how did you do that?”

She didn’t answer me and probably because she thought I was looking, and I was… until I blinked. Still, given how much of the tube remains outside – and she’s making it hurt by moving it all around until I said, “Ow…” and she went into pulling up the scans they did to show me why they put the tube where they did, the balloon anchors that I didn’t shit out and of the options she presented me, having this tube replaced with the low-profile one seems to be the better option; with the disc pressed back down against my belly, there was some relief felt – not a whole lot but when I pulled my undershirt back over it, I wasn’t wincing in pain.

I had decided to call them to have this thing checked because I’d been feeling bursts of stabbing pain where the tube goes into my stomach and a few of those jolts had me doubling over with how sharp the pain was. I tried to tough it out and if I had known that I could move that disc down, maybe things wouldn’t have gotten to where they did – and I did move it down myself before I hit the shower this morning – but the length of the tube and the weight of the connection point for the syringes wants to keep pulling it back out so until the replacement gets done, I’ll likely be pushing that disc back down.

Just another one of those things cropping up during the post-treatment phase that makes it feel like having cancer isn’t bad – it’s everything you go through to get rid of it that’s not all that nice and, in my case, I had to deal with having a trach and the PEG feeding tube – and until my throat gets its act together so I can swallow without it going back to feeling like it’s being scraped raw, I need the tube – I just don’t need the tube making me miserable and even when I’m sitting down and being still.

I have stuff that needs to heal and it’s not like you can say, “Oh, it’ll heal in a couple of weeks!” and it heals in a couple of weeks because as far as my throat goes, that’s not even the case and there’s no telling when it’ll be fully healed and like there’s no telling what I might eat that’ll piss my throat off – and there is only so many calories/protein I can get from liquids to help me with my weight, like, shit, a thick steak would be nice right about now but I know that no matter how small I can cut it up and no matter how much I chew it, it’s going to feel like swallowing broken glass.

So that needs to be worked on and, hopefully, the low-profile tube won’t be giving me grief, making it one less thing to be concerned about. My lady had to get my appointment with my oncologist moved to the next day because they scheduled the tube replacement for the same day, and we figured that they wouldn’t get done with the replacement in enough time for me to hustle over to the other side of the hospital campus to make my appointment with my oncologist so… rescheduled for the next day. I have so many appointments coming up in May that it’s not even funny – and that includes a visit to my PCP for my yearly wellness checkup my insurance requires; all kinds of blood work to be done; a CAT scan of my neck then a PET/CT scan from the top of my head down to the middle of my thighs, the PEG tube replacement and… appointments and a couple that are in 2025.

I felt great relief and a sense of accomplishment when I finished chemo and radiation but all these follow-up appointments kinda harsh my groove a little – but they’re all necessary so I try not to let it bum me out and especially the ones I have to get up early for and I don’t feel like twenty miles of bad road… because my PEG tube has been hurting me throughout the night.

 

Living With… Stuff: 07 March 24

I went into my PEG tube replacement the same way I went into my trach replacement: No idea how the replacement was going to take place.

Up at 0700; had to check in at the hospital at 0850; procedure to be at 1050 but they didn’t take me back to the lab until well after noon but this is pretty normal for procedures that aren’t a matter of life and death; they get you there, into a prep room and once they take your clothing away to secure it, um, where are you going wearing nothing but one of those flimsy gowns and those grippy socks that never seem to fit your feet?

The only thing I really knew was that they were going to replace my existing PEG tube – a G-type – with the exact same tube and not the J-type… what I didn’t know was how they were going to do it. Well, let’s get to the good part: They replaced my G-type the same way I’d gotten my #8 trach replaced with a #6 – just “yank” it out and push the new one in.

Wait, what? Okay, so I did know how they get the old tube out but since I was to be sedated, I’m thinking that they’re putting the new tube in the same way the original went in and… that’s what I get for thinking. They roll me into the lab, and I have a “Vietnam Flashback” upon seeing the giant monitor with my name on it except in this lab, there’s only one monitor where the one I remember from my hospitalization had two, maybe more.

Yeah, I had a moment for a moment but I’m good as they get me to slide over onto a narrow table that has either a flat X-ray or fluoroscope emitter which would allow the team attending me to see inside of me and it’s cold as fuck in there and even colder than it was in the prep room. The team attending me were cool and affable as they explained what they were doing and the one doctor actually said that my old tube looked pretty good despite having been in me for as long as it had.

The nurse attending preps a syringe or two of stuff to put me into the twilight zone; not completely out but not completely awake and featuring Versed, a drug I’m very familiar with because of its interesting side effect: It erases your short-term memory for a few and, really, an ideal drug for this application and you’re putting a patient through something you’d rather they don’t remember taking place.

Meanwhile, I’m being doused in something cold and wet then draped in multiple layers of… stuff; the usual surgical drapes but this… blue thingy they unfolded and put over me that so reminded me of being stuff into a paper bag (because of the sound this drape made). The doctor performing the replacement then tells me how the replacement is going to happen – pull the old one out and just push the new one in and then he proceeds to do just that.

And, yeppers, it hurt. Not “holy fucking shit that hurts” but it wasn’t nice and neither was feeling the discomfort of him pushing the new tube in. He’s doing… whatever he’s doing to fix the tube in place and the pain felt is quickly subsiding and I’m lying there thinking that maybe we didn’t have to go through all this “elaborate theater” to do something that literally took him about a minute to do.

Yes, it did very much remind me of having my trach snatched out; that hurt, too, but that was more surprise than actual pain – this was actual pain and made “worse” by being told that I couldn’t move either of my arms from the position they’d been put into. I had to really make myself lie still during the removal and installation but all in all, I’ve felt worst pain in my life than this event.

Ah, but because they did give me sedation medication, I had to be observed for a half hour which was really more like almost a full hour but my attending nurse in the prep/recovery room could tell that I wasn’t feeling any effects of the sedation and busted me out a little early.

Cool beans. The whole event was anticlimactic. My lady and I just wanted to get home so we could chill out and take a nap before dinner and, yes, I did order Pizza Hut’s Melt and some wings and had a good laugh at myself because I suspected that I wouldn’t be able to taste either item but as far as eating stuff to back to gaining more weight, it would have been nice if I could taste it but it was about being able to swallow my food and enough of it before my throat got pissed off.

The honey BBQ wings I got (but a flavor I didn’t order) smelled wonderful and eating a piece barely had a taste of unseasoned chicken to me and, on the whole, I couldn’t taste anything I was eating but, again, this was an exercise in swallowing. I don’t think I did badly, all things considered at this stage of things but I gotta stay with it so that my G-type PEG tube becomes nothing more than an interesting conversation piece.

We were reminded that the new tube should be replaced in either three or six months and that if they don’t call us to schedule it, we’re to call them and… that’s all, folks. Almost nothing to see here. Next up, back to back to back doctor’s appointments…

 

Living With… Stuff: 05 March 24

One of the fragments of memory I have about being in the hospital was being told that they were going to get me some nourishment and it seemed to me that they were explaining this to me while they were taking me somewhere to do it.

I remember being taken into a room that, to me, looked like something out of science fiction and there were several big screens that had my name on them. Then it was like I blinked… and someone was holding a silver object in their hand and explaining to me that they had to insert the silver object into my nose so that they could numb me so they could put in a feeding tube.

What I clearly remember is wanting them to stop trying to stick the object up my nose; I also clearly remember a woman, masked and gowned, who was holding my hand as others were “shouting” at me to be calm and to relax. The last thing I remember was finding the joints in the woman’s fingers and separating them, breaking her hand. I don’t remember anything after that but I really do wish I knew who she was so I can profusely apologize for harming her.

I realized that I was running on pure animal mode, and I must not have been the most cooperative patient because my lady did tell me that I had to be restrained hand and foot and, yeah, I have a memory fragment of me kicking someone or something trying to yank down anything I could get my hands on and, yeah, I’m not proud of any of it.

I don’t really remember when they made me aware of the PEG feeding tube that was installed in me but that didn’t surprise me because I had no awareness of being trached, either. I kinda figured that I put up one hell of a fight when they were probably trying to put an NG tube in for feeding and knocked me the fuck out and put the PEG tube in. I just recall being told that I was being tube fed and when I was being changed… because I had soiled myself (again), I saw the device sticking out of my stomach and, I dunno, in a way of coming back to my senses, I was damned curious as to how they got the tube in me.

By the time I was trying to eat normally, me and the feeding tube weren’t the best of friends; I was either going to eat normally (or close enough for government work) or I was going to be tube fed – but not both because it was giving me that horrible feeling of having eaten too much and the deal struck with the nutrition people was that if I ate 50% of my food, I wouldn’t be tube fed and it was a deal that came home with me and, yeah, once at home, I was eating everything I could get my hands on, well, until radiation ruined my ability to taste stuff and to swallow.

My lady was making sure to write down all of the appointments I’d have coming up once I was discharged and one of the calls she made was to the folk who put the PEG tube in me and asking them when should I come in so they could check things out and she was told not until the first of the year. 2024 rolls in, my lady waits a little bit and calls again and I honestly don’t remember if they even answered her call or they told her “Not yet…” or something like that but we did wind up calling them because I’d lost a button and while I was told, in the hospital, that the two buttons might fall off by themselves, eh, don’t worry about it – but we made the call anyway because I know I was worried about it – but the person we talked to didn’t seem to be all that worried and said that the buttons were anchors for the balloon holding the tubing in place and it wasn’t going anywhere.

While we weren’t doing any tube feedings, I still had to flush the tube twice a day and I got into the routine of doing it in the morning and again before I went to bed. I was concerned again when the second button came loose and was dangling by a thread – literally – but they said not to worry about it. Then, the tube started hurting me; sometimes I could move it a certain way and it’d stop hurting and, well, to shorten this, at one point, the tube was making its way out of my stomach and I had to tape it down so that it wouldn’t get snagged on something and after a serious bout of vomiting last week, my lady called the PEG people and started asking questions and when could I come in so they could look at it?

Well, come to find out that I should have been to see them around 02 February… to have the PEG tube replaced and, apparently, just like with my trach, I’d had it in too long so an “emergency” was declared – and I put it that way because my lady told me that this is what she was told they’d have to do – so that I could get my PEG tube replaced… this coming Thursday morning.

And here I had been wondering what it was going to take to have it removed permanently. Now I’m thinking about how they got it in me to begin with and it took my youngest son to mention finding a YouTube video which, honestly, I never thought about so, yeah, I opened YouTube and searched for PEG tube replacement and found a few videos that were about putting one in – and the one I saw about taking it out gave me a, “oh, fuck no” kind of moment to see it just being pulled out.

And not unlike the “dirty trick” my ENT doc pulled on me with my trach and him just snatching it out…

I got to see why they put you to sleep to do this and, honestly, it’s kinda cool how do it but I also thought that Thursday is going to be a long day… for my lady since I have to be at the hospital two hours before the scheduled time for the procedure and I was told that the procedure was going to take two hours (and probably including recovery time) but that’s a six-hour chunk of time and I already know that she doesn’t like sitting around the hospital while I’m being operated on so I hope she can “drop me off” and come back when I’m done with the procedure so she won’t have to spend six hours going stir crazy. She thought about that, too and, well, I don’t blame her and more so after how much time she spent at the hospital when everything went sideways for me.

Hopefully, replacing the tube will get rid of some issues I’ve been having being tube fed and issues we were told were possible because this PEG tube has been in me too long. I’ve been slowly losing weight and, as I’ve written about, it’s mostly because I can’t swallow a lot of stuff without pissing my throat off and having to endure fits of coughing that, at least to me, isn’t all that different from the coughing I was subjected to when I had my trach in – but the real similarities at work is my throat is badly damaged, once by being trached and then by radiation and there is no question in my mind about which situation is the worst thing ever.

I keep saying that it’s one thing to be told that my throat would be damaged by the radiation… and a totally different thing to actually experience it; they kinda downplay it by saying that it’s like having the worst sore throat ever and, well, they’re right… from a certain point of view. This isn’t your sore throat because you have a bad cold; this is your throat is sore because it’s been burned and the only thing that is going to help this is… time.

It’s not been a good time having to deal with this; having to try to explain that, no, I don’t have a loss of appetite because I sure as fuck want to eat… but I can’t taste anything and, worse, it hurts like you would not believe trying to swallow anything more solid than soup or protein drinks, which are rather soothing to my throat while they’re fresh out of the fridge but not so much, say, halfway through the container. Now it’s warm and prone to pissing my throat off and driving me insane because (1) I can’t taste it and (2) the mouth feel is very off-putting.

At least being tube fed, I don’t have to taste it or worry about it pissing off my throat. This whole episode has been fucking with both of us and not in good ways so, hopefully, replacing the PEG is going to lend itself to being fed without me barfing it all back up – and pissing my throat off even more. And, yeah, every time I cough, I flashback to 27 October 23 and I work hard at not letting what happened that day fuck with me; I need to be more focused on getting better.

Hell, I’ve even been taking the bottles of water I haven’t totally finished off and pouring them into the syringe that I attached to the tube when I flush it and, yeah, it feels funny to be drinking water that my mouth knows nothing about; last night, I put a bottle of G2 Gatorade in there because the citric acid in it was – you guessed it – pissing my throat off something fierce. I actually enjoy holding the syringe so my lady can pour the nourishment in.

I had some cream of celery soup for dinner and… I could taste it. I’ve been sipping on blackberry Hint water and… I can taste the hint of blackberry in it. I have moments when I’m drinking an instant breakfast or one of my cherry cheesecake flavored Ensures when I can taste them and I’m feeling hopeful that my sense of taste is starting to return but I’d really like my throat to get better… so I can chow down on another mushroom cheesesteak with bacon and jalapeños. Or one of the Shake Shack’s cheeseburgers with bacon and avocado; ah, to be able to taste and swallow the delicious ramen I have stockpiled would also be nice. Or put a serious hurting on some chicken wings and… you never know how much you miss eating when you can’t eat.

But first, a surgical procedure on Thursday and one I hope will help to right the ship…