Living With… Stuff: 12 May 24

I had my PET/CT scan on Friday and the PET scan report revealed… no tumors or cancers found.

It noted an increase in the inflammation around my PEG tube, which didn’t surprise me since it’s been bothering the shit out of me and is scheduled to be replaced on the 22nd with a low-profile device. I have to wait a few days for the CT scan report, which kinda makes me a little nervous because it might say something different from the PET scan report and I agreed with the technician who said that she didn’t know why it took them – radiologists – so long to read the CT and write their report.

I said that I didn’t know, either, but I have had so many CT scans over the years that I expect to not see or know about the report for a couple of days after the fact. My thing was having to go through the pre-scan stuff – what I can and can’t do the day before the scan as well as what I’d better not do six hours before the scan which, just like the previous scan, left me really hungry because all the stuff I like to eat is on the list of things I can’t eat.

Then I had to be up early (for me) so I could be there 15 minutes before the time I was scheduled to be there and, honestly, I don’t know why since all I had to do was sign the consent form – at this point, there isn’t a whole lot that the hospital doesn’t know about me so it’s not like I had to list my ailments and medications. It didn’t help that it was kinda rainy, it’s Friday, traffic in my neck of the woods can get crazy on a dry, sunny day and even crazier when it rains (and something I’ve never understood). My lady usually goes with me to my appointments but since the PET/CT is a two-hour procedure, yeah, she wasn’t coming with me, and I don’t blame her one bit.

I had the same technician that I had the last time I was there for the scan; she remembered me and remembered my coat and I remembered that she really liked it and had asked where I got it (and after the scan, she offered to take my coat home with her) so it’s always good to be remembered given how many patients are seen on a daily basis. She sets the IV after taking my blood sugar (it was 89), hits me with the radioactive sugar shot and… time to sit and wait. I called myself watching TV as I reclined in the chair with a really warm blanket on me but I nodded off until another tech came in to put me in the machine… after I hit the lavatory.

She’s telling me how long the PET scan is going to take and how long the CT scan will take as I get settled on that narrow-assed table – they really could make them just a bit wider! After covering me with a couple of hot blankets fresh out of the warmer, she straps me to the table, tells me about the speaker and mic in the machine so if I say something, she’ll hear me. I take the instructions in stride because, of course, I’ve heard them before, and I really don’t want to spend the next hour in the machine, but I have to… and I’m doing my best to stay awake.

It didn’t help me that I didn’t sleep all that well the night before with my stomach growling at me because there wasn’t much I could eat, and I couldn’t have my tube feeding. At one point, I hear someone in the room and I’m thinking it’s the tech and maybe something’s not right because the table moves so that the lower half of me is sticking out the back of the machine and hasn’t moved since and… someone is putting more blankets in the warmer and, I guessed, refreshing the supplies in the room and that’s never happened to me during a scan before.

Some guy comes in to tell me that now they’re going to do the CT scan and I’m tired, hungry, and bored silly so I just mumble an okay. Finally, they’re done scanning me and now comes the part I’ve come to not like a whole lot: Getting off the table. Bad enough to get that dizzy feeling sitting up but my old ass has been on that table for an hour and the warmth of the blankets had worn off, it’s cold as fuck in the machine room and… I got stiff from a lack of movement. So, now I’m trying to pull my pants back up and I’m trying to get my balance back together and… I hate getting off of the table and a hatred I gained having to be zapped every day for 35 days.

Now I gotta hike back to the main entrance of the hospital to get to the parking garage and up to the third floor where I had parked – and trying to find a parking space in there is a bitch – and I’m on my way home and arriving two and a half hours after I left. Now I want some coffee, something to eat, and I want to take a nap. I couldn’t stop myself from thinking – and not for the first time – that having cancer isn’t the problem: It’s all the stuff you gotta do about it and the post-treatment stuff just adds to the whole thing.

My throat still wants to fuck with me and making it hard and painful for me to swallow anything including water which necessitates having to be tube fed since eating solid foods just pisses my throat off and it’s no picnic that my damned PEG tube is hitting me with jolts of pain even when the damned thing isn’t being bothered by moving around or my clothes are pressing down on it and I sometimes laugh when I catch myself adjusting the PEG tube and not unlike when I have to adjust my cock and balls occasionally and, yeah, I do my best just to grin and bear the discomfort – and I haven’t even talked a lot about the neuropathic pain that’s fucking with my feet but I’m of a mind that the left-side pain I got from chemo is going to be permanent since it hasn’t slacked off after being done with chemo.

Maybe – and like so many other things related to this – it’s just going to take a very long time if the left-side pain will dissipate, and the additional right-side pain will go back to the “normal” pain left behind when I had my stroke… but I’m beginning to doubt it and this pain in my feet wants to fuck with my head because it never stops and messes with my ability to walk. I went through some shit to get used to the right-side pain but even an increase in my Lyrica dosage and the addition of oxycodone to help with the pain hasn’t done much to take the edge off.

I look in the mirror every morning and I see a guy that… I don’t recognize and that’s because I’m not used to seeing myself without my moustache and goatee and having to shave because the hair on my face still wants to grow in unevenly and in patches – and my lady likes to tease me about that – and I wonder if my facial hair will ever grow back the way it was before but there’s no way to know that it will thanks to the lingering effects of the radiation to add on to chemo removing all of my hair to begin with and… maybe you can understand why I say that having cancer isn’t as bad as the stuff you have to go through to get rid of it – and then the stuff you gotta deal with after you’re done with being treated.

My immune system is still whacked and as a recent trip the lab revealed, and the good thing is that all of the indicated values aren’t that far off from being in the low normal range – so I guess it’s getting its act together slowly but surely and like everything else it trying to do. And my job is to remain positive and upbeat and, on some days, eh, it’s not that easy to do. It could’ve been worse and since it wasn’t, that’s definitely something to smile about so… I keep trying to smile through all of this.

 

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: 17 April 24

Yep, still living with it!

Things with my throat are still iffy and it makes eating somewhat of a trial-and-error thing since my throat ain’t feeling acidic stuff, like tomato-based foods and, oh, yeah – lemonade. Gives me chills just thinking about that last one and more so when I had a dragonfruit/pomegranate drink the other day that I didn’t know had lemonade in it… until I took that second sip.

The first sip was tangy and not really all that sweet; the second sip had my throat on fire and I could taste the lemonade beneath the other two flavors and… fuck. I still drank the whole thing and I paid for it, but that dragonfruit/pomegranate pairing is actually pretty tasty.

Live and learn… and read the whole description. I’ve got an MRI coming up to see what the fuck is going on with my right shoulder and connected stuff; the orthopedist seems to think that maybe radiation zapped some nerves and caused some muscular atrophy and, yeah, it’s possible but just one more thing I gotta deal with in this post-treatment phase of, hopefully, kicking cancer’s ass.

When I had my stroke in 2006, it left me with neuropathy on my right side and from head to toes and it’s been a bitch dealing with the sensations that feel like pain and really wants to fuck with me when it’s cold because the neuropathy makes me think, say, that my right hand is freezing when, in truth, it isn’t; my left side is saying, “Dude, it’s not cold and your hand is nice and warm – stop bugging!” but there are too many times when my right side feels cold and convinces my left side that it’s cold – and all I can really do is laugh at how that works – but neuropathy is no laughing matter on the whole of things because there’s nothing that can be done about it other than taking medications that, at best, manage to take the edge off of the 24/7 pain.

Chemo was “nice” enough to give me neuropathy on my left side and it may or may not be permanent, which isn’t making me a happy camper because I feel the effects of neuropathy more… in my feet, which makes sense since they’re the farthest away from my brain. So, when I go to bed – and the time of year doesn’t make a difference – it’s bad enough that I have one foot that is trying to convince the rest of me that it’s freezing cold – now I have both feet doing it but when I touch my feet, both of them are nice a warm and I can find the pulse in my ankles so other than the neuropathy, everything’s fine.

Enter… the weighted blanket. I was on Amazon and ordering some more Carnation Instant Breakfast when my eye happened to catch a blurb about a weighted blanket and the blankets I was using, well, they weren’t really keeping me as warm as they used to but they’re old, been washed a lot, so I need a new blanket and… what’s the deal with a weighted blanket? I read that they can keep you warm or cool (yeah, not really but stay tuned on this one) and if you get one, you should get one that’s from 5 to 12% of your body weight and I said, “Fuck it – I’m gonna get one to see if (a) it keeps me warm (or cool) and (b) if it really helps you sleep better.”

So I got one and I got one that’s 12% of my body weight – go big or go home, right? – which means my weighted blanket weighs 20 pounds. I will admit, at this point, that I screwed the pooch with this blanket: It’s too short for me although weighted blankets, for some reason, are a little shorter than a normal blanket but I’m pulling the blanket up to cover more of the top of me and… I could see my feet so I wound up getting a new blanket that’s long enough to cover my feet and especially when I’m stretched out. Now the fun part: Moving a 20-pound blanket around and one that wants to keep sliding off my side of the bed.

With my older blankets, I could use my feet to pull them back up where they’re supposed to be… and that’s not as easy with a blanket that really does weigh 20 pounds. The blankets have pockets that are “filled” with glass beads and, yep, I can feel the little beads and, yep, they make moving the blanket around… interesting. And since misery loves company, I got my lady one, too – just sharing the love and all that. My poor feet… gets warmer faster with the weighted blanket but, man, moving it around is like wrestling with a small child… and it feels “weirdly comfortable” to have this weight on you and you’re sleeping and I’ve found myself being so comfortable that when I start to wake up, I… don’t want to get out of bed because the blanket is also quite comfortable although the blanket I replaced my first blanket with, well, it’s “fuzzy,” and I’m not sure if it’s the blanket or just the weird weather in our apartment but it does keep me warm… and then, it gets too warm and now I’m playing “wax on, wax off” with a 20-pound blanket.

I can verify that a weighted blanket will keep you warm but the part that says it can keep you cool? I don’t know about that part but what I do know is that the parts of me that are the most affected by neuropathy… seem to be quite happy with the weighted blanket. My lady and I both agree that “wrestling” with our weighted blankets is giving us some exercise to go along with being able to sleep comfortably and, for me, not feeling like I’m freezing when I’m not really cold, well, not until I manage to get from under the blanket and now, I’m in the cooler air of the room.

I’m sure there’s some science at work that makes sleeping under a weighted blanket a good thing to do and, normally, my inner science nerd would want to know all about it but, nah, not really and not this time; all I need to know is that I can be warm and comfortable under its weight and I do get some exercise when I need to pull it up or just moving it to make my side of the bed. To look at these blankets, they don’t look like they weigh as much as they do – and they do make them that weigh more than 20 pounds and come in all the sizes except California King – but who knows – someone probably makes one that size. I can’t imagine what it would be like to sleep under a blanket weighing 25 pounds or more when doing so under one that weighs 20 pounds is interesting enough.

Whether it’s going to keep being beneficial to me or not remains to be seen; what I do know is that I don’t have to worry about kicking the blanket off of me and onto the floor because kicking it around… ain’t that easy.

 

Living With… Stuff: 09 April 24

Met with my oncologist’s PA yesterday and she’s happy with my progress and after looking in my mouth and palpitating my neck (her hands were cold!) there’s some redness in my mouth that’s expected and she can’t feel anything in my neck that doesn’t belong there. They’ve scheduled me for the blood work and scans that I’m hoping and praying reveals that I’m cancer-free.

Later in the day, I had a video call with my palliative doctor and we talked about possible solutions to the pain in my feet due to neuropathy; the transdermal patch I’m currently wearing doesn’t seem to be doing a whole lot and I don’t feel like “investing” in the next highest dose and he agrees that if it’s not feeling better at the current dosage, the next highest won’t make much of a difference.

He did toss out the methadone option again and one that I’m trying to avoid because I’ve basically “just” gotten back on my feet (and literally) and anything stronger like methadone or, gasp, .50mcg of transdermal fentanyl would likely get the job done… by making me so stoned that I don’t know I’m in pain and essentially taking me back off my feet and unable to do much of anything. Been there, didn’t like it, and it’ll be a measure of last resort if the pain in my feet escalates to the point where I really can’t take it anymore.

So to avoid any withdrawal symptoms, he’s stepping me down to the .5 mcg patch even though we’re both of a mind that I could take this patch off and not experience any withdrawal symptoms that I couldn’t deal with – you should try coming down off of fentanyl so the patch can’t possibly be that bad. Now we get to the latest thing:

I’ve been tasting something acidic in my mouth that’s been setting my mouth – and, specifically, the right side of my tongue – on fire and I mean that shit hurts like nothing I’ve experienced so far. I have suspected it’s part of the reason why I have the magic mouthwash that has an antacid in it and the “acid” is a byproduct of my throat healing from the ass-kicking that it got from radiation. It makes sense given the PA did say there was still some redness at the back of my mouth/throat and it’s possible that my saliva hasn’t mysteriously turned seriously acidic but that’s how my poor brain is interpreting what I’m tasting.

She – the PA – said that it’s likely that the nerves in my tongue are healing, hence the pain I’m feeling and while I can take a shot of magic mouthwash for a bit of temporary relief, it’s yet another of those things I’ve experienced along this journey where there’s not a whole lot that can be done about it – and I just have to grin and bear it and… fuck, refill the script for more magic mouthwash – better to have it and not need it than to need it and not have it.

We talked about my appetite which, as far as I was concerned, was quite good – except for when I couldn’t taste anything – but now that I can taste, I have incentive to eat and I’m doing my best to pack it away as best I can or until I manage to piss my throat off, which invariably happens. Been writing down what I’m eating, how much I’ve eaten, and the calories consumed – and I decided to create an Excel spreadsheet to do this and so some fancy formulas and other stuff I learned to do with Excel. I have the tools, might as well put them to use.

I still have an issue tasting salt, something the PA said makes me a little weird because other patients dealing with this loss of taste report that they can taste salty stuff but not sweet stuff – and I can taste sweet stuff just fine. And I’m reminded that as my sense of taste recovers, things might taste weird to me, like I had some sauteed spinach with garlic that… didn’t taste like sauteed spinach with garlic and the reason why it didn’t was it didn’t have any salt; a tiny dash of salt on it made it taste better but until I can really taste salt, I should not be adding it to ,whatever I’m eating lest I piss off my blood pressure which has been doing just fine with only a very low dose of medication.

So many post-treatment appointments to keep track of and my lady’s been handling them for me although I need to opt for redundancy and put them into my phone’s calendar as well since we’ll go to an appointment and someone will ask what’s a good day for my next appointment and… there’s nothing in my phone so, yeah, gotta do something about that.

And keep a copy of my current meds on my phone, too, since they love to ask me if there are any changes to them; I know there isn’t anything new but it would help to be able to pull it up on my phone. I have to put a call into the ENT’s office to let him know that the course of steroids he gave me for the fluid in my left ear… hasn’t done anything, which means he’s gonna want to put tubes in my ear or maybe both of them and, yeah, I’m so looking forward to that.

Not. All of this keeps reminding me that having cancer, while not a good thing to find out, isn’t the hard part: It’s all the stuff you gotta do and go through when being treated for it – and even after all the treatments are over and done with. It’s also why I am hoping and praying that the cancer is gone and stays gone… because I don’t think I can handle having to go through all of this again.

Which means that if I have to, I’m going to because not doing it doesn’t make sense and if I don’t like going through stuff now, I’m really not going to like it if we have to reinvent the wheel on this – I just gotta do it and at this point in time, I don’t want to have to do this again. This is about settling in for the long haul – the five-year plan the team has committed themselves to in order to deal with me and in whatever way is needed – and I’m committed to hanging in there with them.

I have some weird shit going on with my right shoulder and collarbone area that might be due to radiation-caused nerve damage that may have cause muscle atrophy in that area; getting a scan to take a better look and I need to talk to the radiation folks to see what they have to say about it; the PA took a look and she’d be interested in what the scan I’m getting has to reveal although she seems sure that it’s not something that chemo caused and, sadly, I’m not much help because what I know is that it wasn’t like this before I went into the hospital.

So, we will see whatever there is to see with all of this stuff. One thing at a time, one day at a time…

 

Living With… Stuff: 31 March 24

I get that the radiation pretty much “destroyed” my throat and to the point where it’s hard for me to eat and drink and as I recently wrote, I need to eat and drink and I’m having to make myself do this even though it feels like my throat is being ripped out.

It got so bad that… I refilled my prescription for some magic mouthwash and in the hopes that, given where I’m feeling most of the pain now, the lidocaine in the mix will get in there and provide enough relief so I can “gorge” myself to get my weight up, add calories to the tally, and to fill up on something that isn’t Osmolite or trying to gulp down Ensure with “max protein” and it just fucking sucks to have your throat hurting like this and there’s nothing you can do about it.

The frustration I continue to feel being told that I need to eat; I need to drink water, Ensure, Boost, protein-laden smoothies and I get it but where the rub comes in is… being able to swallow stuff. I have to fight through the discomfort when taking my daily medications although they could probably be ground up, mixed with water, and taken via my feeding tube (and like they were doing when I was in the hospital) but… that’s a lot of prep work and I’m not sure how the gel capsule of magnesium gets into the mix so, yeah, it’s down the hatch with the meds and grimacing because the smallest pill I take feels like the biggest one I take as I wince and swallow and find myself breathing like a rented mule plowing the north forty… because swallowing is a lot of work and, yeah, it’s going to get worse before it gets better.

And it needs to hurry the fuck up and get better. I’m already thinking about how to up my caloric intake when it’s time for me to have lunch and, hopefully, I’m right about what I’m thinking about as far as ease of swallowing goes – I already know that it’s going to taste good, and I remain grateful to be able to taste stuff – but tasting it is only part of the process:

I still have to swallow it. It can be so bad that it’s almost had me in tears; pawing and rubbing at my throat and as if that’s going to help things; taking careful sips of water because that’s one of the things was told to do to help with being able to swallow and while this doesn’t ever take away the pain of swallowing, um, it does make it feel a little better at times.

I bit the bullet (but didn’t try to swallow it, heh, heh) and refilled the magic mouthwash prescription and, again, with the hopes that the lidocaine is going to numb my throat – but also because I have that nasty-tasting acidic taste in my mouth – yeah, it’s back and clearly related to the damage done to my throat – and the magic mouthwash has a component to deal with this as well as… Benadryl. I had to take two shots of the mouthwash yesterday just to be able to finish my dinner and I was so busy thinking and dealing with how bad my throat was feeling that I forgot this stuff has Benadryl in it and… it knocked me dead on my ass for maybe an hour or so.

I mean, I left the dinner table, sat down on the sofa, and was out like a light five minutes later. I woke up with a familiar fuzziness and one I experienced getting chemo; Benadryl was given to head off any possible reactions to the chemo drugs and every time they hit me with it… nap time. And, apparently, my magic mouthwash can put me down as well – and then I’m a little pissy with myself because, um, duh, I already went through one bottle of this stuff and should have remembered what the Benadryl would do.

I’m doing my best not to raise my BP over the whole thing. I know what I need to do and I’m going to do the best I can to do it but, damn, it hurts like a motherfucker and a few of its cousins. The thought crossed my mind to go “all liquid” for my meals and via my feeding tube because, um, that’s one of the reasons why I still have it but it’s on me to be able to swallow… stuff and when just the act of swallowing itself has me getting that look on my face and… I just sigh and resolve to suck it up with my big boy panties pinned on.

And, yeah, I’m writing about swallowing and how uncomfortable it is, and my mind is also deep in the gutter about… swallowing. Let your own minds join me in the gutter on this okay and it’s one of the things that allows me to smile as I deal with this because, um, well, you know, right? And let it make you smile, too!

Weird stuff about this. I can eat potato chips and my favor Chili Cheese Fritos and swallowing isn’t that painful; if it’s soft like an Entenmann’s mini pound cake, I can swallow that without a lot of pain, too – and I could eat those by the truckload because that’s how good they taste. Swallow saliva? Ouch. Water? Ouch. Spaghetti? Okay, that went down easy; the meat-laden gravy? Ouch and holy shit ouch and even after getting the meat down in as small pieces as I can get it and, yeah, back in the gutter and… while I find all of this curious, it still becomes a major point of frustration because there’s nothing, I can do other than to wait for the damage to my throat to heal once and for all…

And whenever that might happen. It is greatly interfering with a primary goal: Eat so I can regain the weight I’ve lost. Recalling how many times my RO – radiation oncologist – was telling my lady to feed me good foods with lots of protein (yep – still in the gutter in the background) – and that’s all well and good… if I’m able to swallow it and it’s not like I can’t – it’s that I can’t do it without experiencing some nearly indescribable pain.

I have to work through it. I have to push through it. It’s not easy to put out of my mind because I’m always swallowing – and grateful that my saliva isn’t thick anymore (knock on wood) but I’ve caught myself not swallowing because, subconsciously, I know that swallowing my own saliva is going to cause some pain – usually a little but sometimes a lot if I have that acidic taste in my mouth – and, hence, the magic mouthwash and its antacid component.

I was thinking about doing the baking soda thing (and as I was told to, by the way) but when I did that, it raised my blood pressure and that’s a deal breaker and more so when I wasn’t on any BP medications – and the docs on my team not getting that I didn’t have to swallow the mixture for it to affect my BP – it got absorbed by my mouth and all by itself – no swallowing needed. I loved that, “Oh, yeah…” look they got on their faces when I mentioned this but you gotta know that if I was thinking about baking soda, the acidic nature of whatever’s going on in my mouth and throat was really bothering me and enough for me to get on the phone, call in the refill for the script, go get it and hope that I can get enough of its numbing effect so I can eat and add to my caloric intake and add to the “let’s get fat!” portion of the program.

Some big time sighing. I keep being told that my body will be slow to heal without the food it needs to create the energy needed to do the healing and it’s not like I don’t know this and it’s almost like no one is listening to me when I say that if I can’t taste it -and can’t swallow it – then I’m not encouraged to eat – and going all Osmolite is possible but it’s not the same as being able to eat and more so when I’m encouraged to snack in between meals and… we have now circled back to the beginning, haven’t we?

Well, okay – they are listening to me but the only thing they can do or say is to nod their understanding of my dilemma… and tell me that I have to eat and to do the best I can. Easy for them to say and to do and I just kinda roll my eyes, gird my loins, and… swallow to the best of my ability and no matter how badly it hurts.

I share this not to be riffing about it all that much but as… information if you are unfortunate enough to develop a cancer of your throat and neck because this is stuff you’ll have to look forward to post-treatments and I think it helps to hear it from someone who’s been through it – or is going through it and it is no joke, well, um, it isn’t if your mind isn’t in the gutter about swallowing and I can’t get my mind out of the gutter which, overall, really means that in other areas, I’m doing fine and dandy… except for this swallowing thing.

No such critter as too much information…

 

Living With… Stuff: 30 March 24

One of the many things I noticed when I… was aware of the world around me was that my hair was coming out.

No eyebrows or eyelashes; facial, body, and yes, pubic hair all gone and like I’d never had any. Even with being afflicted with male pattern baldness, the rest of the hair on my head was somewhat curly but what I could feel coming off of my head – and what I could see – was straight. I dimly remembered being told that chemo would, more than likely, make my hair fall out but I had some other stuff that required my attention other than my apparent lack of hair.

Oh, I wanted to get out of that bed and stumble to the bathroom so I could look at myself in the mirror but I couldn’t; the bed was alarmed and I had a lot of stuff hooked up to me; it wouldn’t be until a few days before I was finally discharged that I was able to sneak out of that damned bed and go look at myself in the mirror…

I looked like a hot mess, which matched the way I was feeling. No hair on me anywhere and now I could see the trach that was in my throat and not just feel it although it did me some good to be able to put a finger over the cannula… so I could talk to people.

Post-discharge and I’m getting into the weekly chemo treatments, and I’ve gotten used to – and am amused by – my lack of hair. I’m not sweating it but I just thought it was funny as hell for me to be as smooth as a baby’s butt… everywhere. I remember reading, in one of the many packets I got about chemotherapy, that eventually, my hair will grow back but, um, it might not be the same color, texture, etc., as it was before chemo ghosted my hair.

A lot of my hair started coming in white and straight and… in patches. Just enough “peach fuzz” for me to see that, yeah, my hair is trying to make a comeback but between the chemo and then daily radiation treatments, my hair is getting its ass kicked but, again, there are more important things to be concerned about.

My lady is having a fun good time calling me “Patches” because my facial hair isn’t growing back the way it was before all of this happened. I have… porkchop sideburns and I haven’t had them on my face since 1972; my moustache is only growing in on 3/4th of my lip; the rather nice VanDyke beard that’s been my trademark since I started shaving… is only represented by nine hairs huddling together pitifully – and now I have six straight, white eyebrows that want to stick out like signal flags.

Thanks to the radiation, no hair is growing on my neck, which is kinda okay with me since shaving my neck has always been a problem until I just changed the way I shaved and all that good stuff. I’m not supposed to shave that area… and I’m not going to but I don’t recall it being said that I can’t get rid of the crazy hair on my face and, sheesh, rid myself of the straight hair growing on my head.

It is to note at this point that the hair under my arms and pubes is/was the last hair to decide to grow back, not that I’m mad about that but along with some other observations, looking for the hair under my right arm is what got me wondering… what the hell happened to my right shoulder? It doesn’t exactly hurt but it doesn’t look the way it did before I was hospitalized and appears to have been… dislocated? I can only speculate on what might have happened – and if anything really did happen – and I know – assume – there’s no point in asking anyone on my team if they know what happened because chances are they’re not going to tell me and when I did mention it, all I got was confused looks that said, “Um, I don’t know what you’re talking about…”

I have an appointment to see an orthopedist about my shoulder next week; this is… disturbing because you can look at me and tell that something’s not right with my right shoulder – but it was something that I didn’t notice until I’d been home for almost a week – but, then again, I had other things to focus on like getting resettled in at home.

I had taken my clippers and buzzed the hair on my head and the patches on my face; I’m not an overly vain kind of guy but having my hair looking the way it did was driving me crazy so it had to go. Then the following days staring into the mirror every morning and seeing how slowly my wayward hair is to grow back in – until it finally makes it back and… my lady’s laughing at me and all I can do is shake my head about it because there’s nothing I can do…

Except grab the clippers and get to work. Grabbed my razor and oak/Bourbon scented shave cream (oh, my, that stuff smells so good!) and got to shaving; this is kinda foreign to me in that… I had to figure out how to shave the stubble of my moustache left behind after the clippers mowed through it. I’m twisting my mouth and face this way and that way and how do guys that shave their ‘stache do this every damned day?

I’m careful to stay away from my neck; the water’s icy cold as I go to clean the remnants of the shave cream from my face; I look at my reflection in the mirror and, yeah, I know this guy… but I kinda don’t because I’m not used to seeing myself without my moustache – but I am vain enough that I’m not going to keep walking around with 3/4’s of a moustache on my upper lip.

Oh, hell, no…

I’m looking through the hair I took off of my head and there’s more white/grey to be seen than before all of this went down and it’s tripping me out because every last bit of it… is straight. Not a curl to be found anywhere. Yet another one of those things I’ve been experiencing where it’s one thing to be told that something is going to happen and then it does and being told about it before the fact doesn’t quite prepare you for the reality of the moment but all I can really do is either frown a lot… or laugh right along with my lady.

Perhaps one of these days, my facial hair will grow back in and be nice and full as it used to be before chemotherapy did a number on my hair, but I also have to accept that, as I was told, it might not grow back in the way it was before; this is just one of those post-treatment things I’m dealing with like getting caught up on my other doctor appointments that being hospitalized kicked to the curb and trying to get settled in to the five years my team is going to spend making sure that I get to be cancer free and stay that way.

I’m laughing because, at one point, I was… content to just let my hair grow back in any old way it wanted to because as nice as it is to have hair on my head and face, it’s not that important… but looking in the mirror every morning, seeing the straight strands of white/grey hair on my head, in my eyebrows (two in my eyelashes that wasn’t there before); the patchiness of my ‘stache and what’s left of what used to be my beard and sideburns and… hell, no, I gotta do something about this.

I think that at this point in things, it’s just as important to look good as it is to feel good because it lets me know that I’m kinda/sorta doing okay and that I am making progress slowly but surely… so why not avoid looking like an old-ass werewolf if you can? One morning, I tried to brush my hair down; trying to comb it was an effort in futility and it wanted to stick out from my scalp… and that straight-assed shit was laughing at my brush; oh, the hair would brush down and… spring right back up and like I never brushed it.

I’d gotten up early yesterday morning and ahead of my appointment with the orthopedist about my ankle and with the express purpose of ridding myself of the weird-assed hair on my face and head and if that makes me vain, so be it. I was going to let my face go with just being buzzed but I’m looking in the mirror and I see… stubble and, worse, I can feel it as I rub a hand across my face and… I grab my razor from where it’s stuck to the mirror, grab that good smelling Cremo shave cream and… trying to remember how to put it on my face.

This is both funny and a little disconcerting, but I recognize that I hadn’t shaved… since before my birthday and I really did momentarily forget how to put the shaving cream on (it doesn’t lather) and then, oops, I’m only putting it on certain spots on my face and then the whole upper lip thing and… I’m okay with being vain, not okay with looking like a crazy person with facial hair growing weirdly and incompletely and… it is what it is.

As it’s said, it’s not always the big things but the small things that can make the difference. Even though my throat wants to act like a fool again – and after it was getting better – it was nice to look in the mirror this morning and not see crazy hair on my head and face and even for a moment, taking my mind off of my throat. It’s going to take time, I know, and I’m in it for the long haul… but I’m not gonna put up with the weird hair.

Nope. I’m just gonna be vain. “Patches” is being retired until further notice.

 

Living With… Stuff: 21 March 24

Went to see my ENT yesterday to follow up on what’s been going on with my throat post chemo/radiation treatments and having my trach removed. I like this guy and his sense of humor but for a young doctor, I thinks he’s pretty squared away, too.

We’re talking about what’s been going on post-radiation with my throat and when he said that he wanted to take a look at my throat, well, time for the scope-in-the-nose thing, something my lady and I knew was – and had to – take place… but it’s still kinda weird having it stuffed into your nose.

He offers to numb my nostril before putting the scope in there… and we laugh because we remember the last time he said that he was going to numb me a little so he could remove the #8 trach – and he didn’t and, as you might remember, he just snatched it out of my throat, catching me totally off-guard. But he does find a topical anesthetic, applies it to a cotton ball, stuffs it in my nose and we talk more about possible scar tissue in my throat and how radiation keeps working even after treatment is over and done with and…

Scope time. It actually doesn’t hurt but it does feel very damned weird and it’s making my right eye feel some kind of way as he’s peeking around in there and having me go “ahh,” moving my tongue around and… I can feel in the back of my throat and, ugh, man, I’m happy when he withdraws the scope and happier when he says that he likes what he sees and that he doesn’t see any cancer in my throat but, yeah, some scarring but he assures me that this will get better down the road.

I have him take a peek in my left ear because, last week, I started having a problem clearing my ear, you know, how you yawn to make your ears pop? I’m telling him that it feels like I have swimmer’s ear but the kind where you can’t get the water out of your ear and he takes a peek in there and, sure enough, there’s fluid in my ear and he says that, yeah, radiation can make that happen. He proposes a course of steroids to clear the fluid… or he wants to put a tube in there and I give him a look since, remember, we have a “history” with him pulling stuff out and stuffing them back in. I’m not really feeling the tube thing but accept that if the steroids don’t get the job done, getting tubed will be needed.

I mean, I can hear out of my left ear but it’s driving me crazy because my ear wants to “pop” and clear itself and… it doesn’t quite get there. Or, I can have my head in one position or the other and it clears but the moment my head is level, fuck, “clogged up” again. I had told him that it’s crazy because I can’t open my mouth wide enough to “yawn” and clear things up and he just nods and takes the look in there to find the fluid and then checks my other ear and pronounces it clear of fluid (and hopefully, earwax).

And the post-treatment train keeps on rolling along. On the first day of spring, I had my visit with my RO’s nurse practitioner, who checks me out and we talk about… post-radiation treatment stuff like the PET scan (and maybe some other scan) to make sure that there’s no cancer left in my body and a reminder that they’ll be following up with me for the next five years. Of note was her checking my neck and… her hands were warm; it seems that everyone else who wants to palpitate my neck has dipped their hands in liquid nitrogen before feeling my neck up with their icy cold hands and fingers!

We stopped by to see the Infinity radiation techs who worked on me for those thirty-five days, and it was good to see them and good to be in the Infinity area… and I’m not waiting to get on the table. We make a joke or two about putting my mask on at bedtime and I tell them that I see that mask every morning when I wake up. They have a patient in the room, so we don’t stay long but, yeah, it was good to see them.

My sense of taste is starting to come back and between this and my throat feeling better than it has in a long time, I can start to get back to eating more solid foods so I can get my weight back up as well as “experimenting” with different things to see what I can taste and what still remains tasteless to me. Like, I had some watermelon last night and the first piece I had tasted like watermelon – but I couldn’t tell if it was sweet or not; my tongue seems to want to taste some sweet things but not all sweet things and then, as I crunched on the melon, it started to… taste like cucumber to me.

Yeah, don’t ask – I’m just telling you what it tasted like. I had a piece of cheese Danish, too; I could taste the sweetness of the cake part of the Danish; could taste some of the sweetness of the drizzled frosting; couldn’t taste the sweetness of the cheese filling – it just tasted like cheese and barely like cheese at that. I was snacking on some “crackers” that were jalapeño-flavored, but they tasted like sour cream and onion; I could taste the jalapeno’s fruitiness but didn’t feel the heat so much but discerning what I can and can’t taste is proving to be interesting, if not a bit hilarious.

Like, I can’t taste salty stuff – but I have a brewed soy sauce that I can taste its saltiness a little – and it’s just crazy how this has transpired but like the stuff going on with my throat, it’s going to take time before it gets sorted out and, hopefully, 100% back to normal.

 

Living With… Stuff: 15 March 24

As usual on this date, I’m reminded that Julius Caesar should have listened to the oracle when he was to beware the ides of March or, yeah, the 15th. As he was being stabbed to death, I wonder if the thought had crossed his mind that, damn – I should’ve listened to the oracle’s warning! He obviously didn’t…

I decided to drop a few words hear to let y’all know that I’m still here – I just haven’t had anything to write about since the feeding tube swap. I had a bad gout attack hit my right foot – and on top of the neuropathy I’ve been experiencing all along – and I was one miserable puppy trying to get around and having to endure some insane pain. My nephrologist “stepped up” and prescribed me something for the gout symptoms after my problem was mentioned to him and I’m pleased to report that it got to work right away (once the script got to the pharmacy and literally a day late).

He’s also going to eyeball my uric acid levels and figure out what can be done to lower them – I’ve known that they’ve been high since diagnosed with PKD, but this gout thing came out of nowhere; no warning signs just woke up one morning, put my foot on the floor… and wished I hadn’t. It was a necessity but I felt “stupid” for having to use the walker the hospital gave me – and then felt stupid for feeling stupid over something I couldn’t do anything about so once I got over myself, I was good using it to scoot around the apartment although it presented some problems when, for instance, I’m going to the bedroom for the night and I have my iPad, phone, and bottle of water in hand and trying to make sure that I don’t drop them and, well, now that walker has a basket on it.

As I waited for my video appointment with my palliative doctor, I got hit with an epiphany and one that I actually heard in a TV promo for an upcoming show: When you look in the mirror, you see the person you want to see but the camera sees who you really are. It was weird in that this one hit me rather strongly because I had been in the bathroom washing up and, of course, looking in the mirror and seeing the guy I’ve gotten used to seeing but as I was waiting for my palliative doctor to join the video conference, I’m looking at myself and as seen by my phone’s camera and… the guy I’m looking at isn’t the same guy I see in the mirror.

“Ain’t that about a bitch…” I said to myself – and the view of myself on my phone; it reminds me that you can think that you know how your brain works right up to the moment when you realize you never did and a reminder that how you see yourself isn’t even close to how someone else would see you – or how the camera does. My palliative doctor finally joined the conference, apologized for being late – and I’ve never known a doctor to be on time for an appointment – and we talked about upping the doses of the medications I’m taking for the neuropathic pain and hoping that this will do more than maintain the status quo in things.

Neuropathic pain is… interesting because it’s pain and, then again, it’s also a sense of numbness, sometimes tingling, too; I learned that it can make parts of my body feel cold when, in fact, those parts aren’t cold but the situation can – and has – tricked my mind into believing that I’m cold on my right side and my left side is reporting that it’s not cold. But thanks to chemo, I now have this fucking pain on the left side and, as previous mentioned, it has “doubled” the right-side pain that I’d been dealing with since 2006, and making my right foot hurt twice as badly and it is a bitch to deal with because my pain is worse the in my feet and now I have both feet hurting, feeling numb, and/or tingling.

Just another one of those things that have served to put me on notice that having cancer isn’t the biggest problem: It’s dealing with the shit going through the process of being cured can bring to the table that has proven itself to be the bigger problem for me because if it’s not one thing, it’s something else.

I did find out that my cancer was caused by the HPV virus and the P16 “variant/version” that’s related to… oral sex and kissing. I’m doing some reading about P16 and all I can do is laugh and/or shake my head as I thought about all the pussies and dicks I’ve had my mouth on over the decades – as well as all the females (and a couple of guys) that I’ve kissed. My oncologist’s PA was telling us that everyone gets exposed to HPV, but it gets “shrugged off” or “passed” by mostly everyone… except us ‘special ones’ who don’t or can’t pass the virus and it shows its ass in some way… like cancer.

All I could do once I got finished reading was shake my head at the irony of getting cancer because of something I love to do: Give head (and kiss the girls, wink, wink). I’m laughing to myself to think that, yeah, no good deed goes unpunished but… I have no regrets about it; I can appreciate the ironic humor in play. Still, going to get the Gardasil 9 vaccination would be a good thing and a little insurance against the HPV virus and, yeah, even if your butt is as old as I am since viruses don’t care how old you are if they’re going to fuck with you. Get the shot because it’s better to be safe than sorry and, trust me, you don’t want to wind up being sorry.

For me, the vaccination is like closing the barn door after the cows have long since hauled ass, not that it would do me any good to be vaccinated against a virus that’s already fucked with me. Then the question is… is it still fucking with me? Did chemo and/or radiation kill the HPV virus in me? Inquiring minds kinda/sorta want to know…

So, that’s about it for right now. Doctor’s appointments next week and maybe my visit with my ENT doctor can shed some light on my swallowing issues and shed more light on the condition of my throat – is it healing? Yeah, I’m of a mind to tolerate having that scope going into my nose to find out what’s really going on with my throat because I need to eat and swallow more than just soups and being tube fed so I can get my weight back up – but.

Still waiting for my sense of taste to fully return; it continues to fascinate the shit out of me that I can taste egg drop soup (and a few other soups) but I can’t taste much of anything else. Like, I can eat a Reese’s cup and I can taste the peanut butter but not the chocolate.

Or, when drinking a Carnation Instant Breakfast or an Ensure, I can taste the flavor of it taking that first sip of it but after that? I can’t taste it and I’m finding that it’s a motherfucker trying to make yourself eat or drink something that you can’t taste. I had a can of spinach for dinner last night – and along with the rest of my egg drop soup – and I could taste the spinach (and its canned taste) just fine but I had a cup of coffee this morning and… still can’t taste it but I drank it anyway because it was hot – and my throat liked it.

My inner nerd is losing its mind over how weird this loss of taste has been…

 

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…