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…