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: 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…