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.