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: 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: 28 February 24

I am done with chemo; done with radiation; had to get an infusion of monoferric to take care of my iron deficiency and anemia. I have my mask; I rang the shit out of the bell; my radiation techs were there to cheer me on and my radiation oncologist was like, dude, you made it – now it’s time for the real work!

Yes, it’s time to get my body into healing mode; if my throat wasn’t so fucked up, doing the eating they want me to do would be a no-brainer even if I can’t taste what I’m eating; the idea is to load up on protein and calories, but the feeding tube is still in and we will be making all the use of it as possible. Staying hydrated and just be aware that just because I’m done with this, that doesn’t mean the residual and cumulative effects won’t still be taking place.

Which is apparent since I felt like shit after Monday’s zapping and didn’t feel that much better after Tuesday’s final zap; both days I came home, stretched out on the sofa after lunch, and crashed like I haven’t slept in weeks. I felt pretty decent over the weekend, which makes sense – I wasn’t being zapped but it was like “the cancer cure gods” were saying to me, “Oh, do you think you’re getting off easy because you only have two days left? Do you? “

(insert maniacal laughter at this point)

I couldn’t eat all of my dinner; my throat’s been ravaged by two days of really bad coughing and I mean snotty nose, watering eyes, can’t hardly catch my breath coughing and some of it isn’t all that different from the kind of coughing I experienced when I had my trach in; it makes me think that the radiation damage done to my throat is in the same neighborhood of where my trach was placed but that’s just speculation on my part and doesn’t mean anything since now, I had to drink a high calorie, high protein Ensure to make up for my caloric deficit that I didn’t cover with dinner.

Well, after I woke up, of course. My throat was still pretty sore but I kept my word to my lady that I’d try to drink half of the Ensure by drinking more than half of it – and the little bit that was left went into the container for my tube feeding and the plan is to increase the number of tube feedings during the day so that I get the nourishment and hydration I need and to, hopefully, give my throat enough of a break so it’ll heal so I can swallow without feeling like my throat’s being ripped out.

I get rid of the throat pain and food is going to be in grave danger; it may be facing an extinction level event once my sense of taste fully returns. I can finally see if I can put my earrings back in and wear my necklaces – that should be fun since I haven’t had them in since everything went to shit four months ago. Well, to be honest, they’ve been out a bit longer because I’d taken them out to clean them and before I could put them back, well, you know what happened.

And I still need to find out what the fuck is wrong with my right shoulder; I still have a follow-up appointment with the orthopedic surgeon about my ankle which, strangely, hasn’t been bothering me at all; I still have to meet my cardiologist and whenever we can get that scheduled. Next up is my nephrologist and I can’t wait to see what he has to say about my improved kidney values.

And, hopefully, I can go back to not being a morning person. I might need some lock on that one – that ship may have sailed but I’m optimistic and at least my lady won’t have to get up with me to help wake up the chickens. There’s still work to be done and I’m going to be about doing that work until I’m told that I’m cancer free which was and still is the ultimate goal being worked on. There’s no settling for less than that.

The hair on my head is growing in… straight; it used to be curly (but not nappy); I have… pork chop sideburns and my chin hair has only grown in at one little place and, wow, if you weren’t going to come in more than that, why bother to come in at all? My moustache is like 3/4 in and, for now, it doesn’t look like the hair that used to be there is going to make a return… or try to. I look in the mirror and see hair missing or hair that wasn’t the color it used to be before shit happened – the hair is coming back white/grey and the vain part of me… isn’t happy about any of it. Just another thing on the “hurry up and wait” list.

I knew it was going to come out, so it wasn’t a surprise when I was lying in my hospital bed and pulling out clumps of hair from wherever I had hair and, yes, I’m still bald down there. The hair on my legs is trying to make a comeback as is the little patch of chest hair that doesn’t seem to want to grow any bigger. What’s that they say? That you don’t really miss it until it’s gone? Well, honestly, I’m not really missing the body hair all that much but the hair on my face?

I look in the mirror and… who the fuck is that looking back at me? I remember the first chance I got to look at myself while in the hospital and… I didn’t recognize myself for a good, long moment. It was shocking because the last time I saw myself, I looked like… myself. Do you know what I mean? I now knew about the trach, but it was another shock to see it and, yeah, I looked like shit warmed over a few times. I remember just standing there looking in the mirror for a long time before I sighed, shook my head, and got back into bed… before the nurses realized I wasn’t in bed.

Hey, they had turned off the part that rats you out if you get out of bed and hadn’t turned it back on, so I took advantage of it… because I really needed to see myself. Got back in bed and tried to get some sleep and thinking that I was going to have a lot of work to do. Those moments were a long time ago now, but it still feels like it wasn’t that long ago.

And I still have some work to do.

 

Living With… Stuff: 22 February 24

Three business days remain. The light at the end of the tunnel is warm and bright and it’s starting to feel good. A shame this is the only good feeling I actually have.

I was up very early this morning… coughing up bloody sputum and right on the edge of vomiting again and, thankfully, I didn’t barf but not for a lack of my body trying to barf; it completely ruined my night of sleep. It bothers the shit out of me when me or my lady mention this to a team doctor and they’re like, “Yeah, that’s gonna happen – sorry about that!” and they’ve yet to come up with something that addresses this internal damage to my throat that’s causing me so much grief and is directly hampering my ability to eat.

I was told that I have an appointment to be lectured by the team nutritionist and I know my lady is going to read this but I’m getting a little pissed behind people telling me what I need to do but they don’t have an answer to (a) my damaged throat and (b) dead taste buds. Oh, and telling me to stay hydrated which I will say is easy for them to say… because their throat isn’t damaged like mine is and swallowing the tiniest bit of water is still painful.

Yes, I can use my feeding tube to eat and take in water and that’s probably what I’m going to wind up doing even after these three last business days are over with; if nothing else, it’ll give my throat more of a chance to heal without me trying to swallow stuff other than my own saliva (and even that hurts). I was half-kidding with my lady when I said she might have to fry me some chicken and put it in the blender, turn it into a liquid, and push it through my tube.

She took a moment to think about how it can be done. I’m sitting here trying to write this and eat some soup and wondering how much more money this is going to cost me. It still cracks me up that the only things I can take in by mouth that doesn’t seem to bother my throat are cream of mushroom or broccoli soup – and I can taste them a little bit. The problem with broccoli soups is that whoever makes them puts more of the stem in the mix than florets and eating the woody stems is bad from the start. I love New England Clam Chowder and it’s very much in-line with the cream-based soups I can have… except too many potatoes and my throat really doesn’t like potatoes anymore.

Believe me when I say that I love to eat and there’s nothing wrong with my appetite other than this fucking inability to swallow without it feeling like my throat’s being pulled out and, oh, yeah, my taste buds are still out to lunch – and I have visions of the Shake Shack’s smash burgers (with avocado) dancing around in my head. I want to eat. It’s not easy to and the way around this very disturbing clusterfuck is to utilize my feeding tube and then, hopefully, without clogging it up.

One of my radiation techs has a sore throat and lost her voice. “Now you know how I feel,” I said with a smile. I’m really going to miss them because I give them “grumpy old man shit” and they give it right back to me – but they have done a great job of making my experience with radiation as good as it can be, and all things considered. I’m going to have to do something nice for them after I ring the bell, oh, like one of those edible fruit arrangements.

Three business days remain. The work will continue because it must and I’m thinking that once the radiation is done and over with, the real work begins…

 

Living With… Stuff: 20 February 24

Five business days remain. Swallowing feels like trying to swallow broken glass and my neck looks like someone tried to slit my throat… with a dull knife.

I didn’t get my last chemo treatment on Monday because a key blood value was a tad below normal and to infuse me would have completely wiped out my immune system and left me wide open to only God knows what I could catch and wouldn’t be anyone’s idea of fun.

I am to understand that there is no make-up day for this, so I am completely done with chemo as an adjunct to radiation. Still, the “stars” of this show are my throat and neck. I don’t pretend to understand what’s really going on with my throat because it has gone from being a totally abused throat to only hurting like a bitch on the left side. Sunday, I had a bout of vomiting that showed up unannounced and the near constant barfing was doing an additional number on my throat and on top of me trying to cough up everything below my navel because I’d already coughed up everything above my navel.

Just like when I wound up in a fight for my life, all I did was… cough. I actually felt the acid come up into my throat and sat up in enough time to turn my bedside trash can into a barf bucket. By the time I could be able to sip some water, shit, I cannot remember my throat ever feeling that raw before. Eyes watering, nose all snotty and the raw spots on my neck decided to join the party to make me feel even more miserable.

Over the last week or so and when I’ve been washing my face, I could only sigh to see how much dead skin was coming off on the soft disposable washcloth from the back of my neck as well as the front – and trying to be very careful dabbing the places where you could see how raw the skin was and with some of those spots being a little bloody. So painful whether the areas were being touched or not; despite the hydrating lotions I’ve been using, the two places on my neck will dry out and issue some pain for me just turning my head.

Washing my face/neck almost had me in tears Monday morning and again today as I tried to be as gentle as possible to dab away the Vaseline I was advised to put on the areas and, yeah, doing that simple thing was that painful and, of course, it didn’t get better as my skin dried so I could put Vaseline on the cleaned areas… and seeing even more dead skin on the disposable washcloth.

My whole neck is so badly burned that it looks like I haven’t washed my neck in twenty or thirty years. Of course, it wants to itch on top of reminding me painfully about how damaged my skin is; I had to point out the bad spots to my radiation team so they could be careful putting my mask on – and kudos to them because they’ve managed to get me masked without coming in contact with the raw spots. Which means, of course, that I’m locked down, not supposed to be moving and… the worst area wants to itch.

Saw my RO today and he’s just so happy with my progress; he peeked into my mouth and mumbled, “Yeah, it’s still kinda red in there…” turned the light off and addressed the “slash mark” running across my throat – and he didn’t seem to be happy that the “super steroid” he prescribed hadn’t prevented this from happening so he scrounged up a tube of silver sulfadiazine cream that I’m supposed to put on the bad spots only – the rest of my neck still gets the super steroid ointment at bedtime.

That’s gonna make things interesting when I do the nighttime thing, but I’ll manage. I can not only see the light at the end of the tunnel, but I can “feel” it shining on me. I sigh to myself because they’re so concerned about me maintaining my weight and I can’t seem to impress upon them that eating and swallowing anything is painful and they’re trying to call it a lack of appetite when my appetite is fine: I just can’t swallow the foods that would put a lot of weight on me – and I still can’t taste anything.

Yes, that means being tube fed and I don’t have a problem with it and despite it occasionally adding to my pain and like it doesn’t want me to forget that it’s still there… and like I could forget it. I hold the syringe after screwing it into the port and my lady loads me up with the nutritional stuff; another flush with water – and adding to my hydration – and we’re done for the night.

I don’t have an idea when the sore throat will go away; ditto for when my sense of taste is going to return which will make me deliriously happy because I’m going on another eating binge to make the last one look like a light snack. – do you remember the Jamaican patties I mentioned the other day? In five business days – seven regular days – my treatment for cancer will be done with and I can get to being declared cancer free…

Because I sure as fuck do not want to go through this again. The physical toll it’s taken on both of us has been bad enough, but the emotional toll has been a few motherfuckers and their evil relatives.

 

Living With… Stuff: 17 February 24

Time to get y’all caught up!

My neck is a blotchy, burned ‘mess’. I’m going to have to redouble my efforts to keep lotion on it during the day and making sure I put the cream prescribed for me every night. Skin peeling and there’s a couple of spots that are somewhat painful when my skin dries out and there’s spots behind both ears that want to itch after I put lotion/prescribed cream on. Now, the thing that makes this so weird to me is that I’ve only been sunburned once in my entire life – and then on the top of my head because I forgot to wear a hat.

That event wasn’t all that bad… compared to what’s going on with my neck now. The woman who used to be my first poly wife would, when we went to the beach on vacation, get burnt like nobody’s business and I spent my fair share of time peeling away the skin that got destroyed by the sun and while the skin on my neck isn’t coming off in sheets (and like it would for her), there are moments where, if I touch my neck anywhere, my fingers will come away with flecks of dead skin.

Ugh. Another one of those moments where they told me this was going to happen… and it didn’t get real until it happened. My radiation-induced sore throat is either getting worse or it’s trying to get better – I can’t really tell at this point. Swallowing is a bitch and a half; I still can’t taste anything except cream of mushroom and certain broccoli and cheddar soups, and I’ll be damned if I understand how this is really working but, for the most part, my throat still feels like a very pissed off lion is using it for a scratching post.

I was telling the team nutritionist yesterday that having the sore throat is bad enough but not being able to taste my food is even worse and it’s now about forcing myself to eat something that I can smell – but can’t taste. She talked to my lady the other day so she knows that we got the feeding tube involved and it’s not that big of a deal because it’s kinda cool that this is something we can do together: I hold the syringe body that’s screwed into a feeding tube port and she pours in 60ml of… whatever the fuck is in that bottle that still smells like meat to me, until the measured amount of nutritional stuff has been taken in.

One of the things I remembered about this stuff – and because they were piping it into my while I was hospitalized – is that… it gives me the runs. Or technically I suppose it loosens things up and to the point where, um, yesterday, I had an accident while relieving my bladder and, yeah, the literal shit just slid the fuck out, no warning at all. Needless to say, I was beyond pissed about that but at this stage of things, there’s no such animal as not using the nutritional supplement so not only do I have to be more diligent about things, i.e., sit my ass on the toilet whenever I go to the bathroom or start wearing the adult diapers I grudgingly ordered from Amazon… and I still have enough pride left in me to not want to have to wear them but just like a lot of shit I’ve had to do during all of this, I don’t have to like it – but if I have to do it, it’s getting done.

There are only seven treatment days left. My last chemo – and as an adjunct to the radiation – will be on Monday and I’m so close to the end of this that the light at the end of the tunnel is almost blinding but all that means is that even if I’m declared to be done with this, there’s still work to be done: Now I have to focus on healing and in the places that need it… and I’ve already been told that it’s going to take a while and I suspect that there’s nothing that can be done to ‘speed the healing’ up a bit so I can, say, taste whatever I’m putting in my mouth and I’m able to swallow it without it feeling like my throat’s being ripped out and put back incorrectly.

It didn’t escape my attention that my last day of radiation will be exactly four months to the day when the shit went sideways for me. Four months. It seems like it’s been much longer than that and that’s probably because there’s that three-week gap in my memory where I have no idea what was going on – other than what I’ve been told and the medical professionals around me still aren’t of a mind to speak about that… except to keep saying that I’ve been through a lot and they’re impressed at how well I’ve been doing, all things considered.

Hmph. Must be hospital code for “you really don’t want to know.” There’s still the mystery of my… displace right shoulder that no one seems to know anything about but if you were to look at me, you can tell that my right side doesn’t look like my left side and you really get to see it if I take my shirt off and raise my arms above my head. I’m going to have to ask my PCP to order an X-ray of the area so we can see what the fuck is going on and maybe figure out what happened. I do suspect that I may have injured myself when I had to be restrained but this is a secondary concern at this point and just a mystery I wouldn’t mind solving one way or the other.

The treatment has been… brutal? That’s probably a good word because just going through it on a daily basis is beyond being a mere pain in the ass and more so when there’s no such thing as I’m not doing this today, any longer, what-the-fuck-ever. There have been too many days when I didn’t want to get out of bed; too many days when I didn’t want to get stuck in my arm or the back of my hand; too many days of lying on the table of the Infinity machine with my head trapped in the mask and trying to stay nice and chill while the machine does its thing.

Too many days when it’s time to get up and do it all over again. My lady, bless her, said it right when she said that this is like going to work – and especially on the days where one or both of us are playing in rush hour traffic and appalled at how people are driving in the rush to get to wherever they’re going. Too many days of asking, “Who the fuck gets up at this time of day?” because, up until all this happened, I was used to going to bed whenever I felt like it and sleeping for as long as I wanted or needed to… but cancer treatments change all of that and I still haven’t adjusted to being a morning person – but it does give me that chance to play “grumpy old man” when I’m asked how I’m doing or feeling and even more so when I’m giving my radiation techs da bizness when they’re trying to lock my mask down and they’re asking me if I’m okay… while I have the bit in my mouth.

Hell, no, I’m not okay – but I gotta do it just the same and it’s always good for a laugh and especially when I catch them looking behind them to see if I’m still there when they’re leading me to Infinity I but, of course, where else would I be? Where I’d want to be is a whole different critter and I’m thinking someplace hot and sultry would be nice right about now but needs always must and I need to do this.

Failure is seriously not an option. Again, no such thing as I don’t feel like doing this today and more so when the worst of the side effects have showed up as I get closer to the end of treatment so, yeah, if I’ve stuck it out this far, let’s go all the way and get it over and done with, shall we?

My lady is the real hero of this story because she’s had to go through some shit of her own and, yeah, having to deal with me as I go through all of this stuff. She keeps my appointments straight and it’s to the point where they – my team – doesn’t talk to me about stuff – they tell her, and I think it’s funny but it’s also necessary. But, um, yeah – y’all do know that I can hear you, right? She is a beast about making sure that I eat and drink and, honestly, there are too many moments where I don’t feel like doing either thing but she’s there to remind me to do it… and I can hear the unspoken “or else” so, okay, let’s do it and get it over with.

I can only imagine the hell she went through when I went down for those three weeks I cannot account for; I knew she was leery about having to remove my trach’s inner cannula and put it back and all without causing me any discomfort or kicking of a bad fit of coughing but she shoved that aside and, honestly, she was really good at taking it out and putting it back and, most of the time, without me feeling a thing… and something I still don’t believe I could have done myself.

It looks easy. It really isn’t. I try not to be a burden on her because she’s been through enough as it is. She reminds me to order… stuff that I’m running out of, like Ensure, Carnation Instant Breakfast and good old vitamin D milk for my creams of mushroom and chicken soups I have and I still don’t quite understand how I can taste them but I just took a sip of my coffee and, welp, if I didn’t know that I put sugar in it, I could swear that I didn’t.

If it’s sweet, I can’t taste it; if it’s salty, I can’t taste it; as mentioned before, yeah – I can taste the yuckiness of the oral medications I take and especially that damned Mucinex and more so when it rakes fire down my throat as I swallow the yuckiness. So I can, apparently, still taste bitter but not sour all that much and my inner nerd is having a field day over how weird this has been and, really, I want to bitch-slap my inner nerd over being cheerful about me not being able to taste anything.

Like I told the nutritionist yesterday, when you can’t taste what you’re eating, it makes you not want to eat. It’s really a bitch to know what something is supposed to taste like, i.e., the egg drop soup I’ve been partaking of has “chicken soup saltiness” and I know it does… but I can’t taste it. The egg gives me protein and while it’s still warm, man, it makes my throat feel good swallowing it and, yeah, I’m still wondering why I haven’t bothered to soft scramble myself some eggs; when I figure that one out, I’ll let you know but I suspect it’s because I wouldn’t be able to taste the salt and pepper that makes scrambled eggs taste good. I keep telling myself that today is the day I’ll soft scramble some eggs and I kinda look forward to the challenge of it because it’s not easy to do it the way it’s supposed to be done – and it runs counter to the way I like my scrambled eggs.

My brain knows this and is very likely the reason why I’ve not done it. This whole loss of taste thing has really pissed me off because I have stuff like… Jamaican patties in the freezer and I love those things; between the flaky crust and the hot spiciness of the filling, ya mon, them’s some good eats… if I could taste them and, oh, yeah, that’s right – I’m not supposed to eat anything spicy so as not to piss my throat off and I know that they’re so spicy that they always make me wonder why I keep buying them.

My nutritionist did mention that if I were to suck on a lemon drop candy, it could “cleanse” my palate long enough for me to be able to taste what I’m eating; my lady ordered some (since I couldn’t find any when I was in the drug store and supermarket yesterday) so it’ll be interesting to see if it actually works.

Seven days remain; this journey has – will have – taken exactly four months to the day it began. There’s no telling how long it’s going to take for me to get back to being ‘normal’ and I know that my team and I will still interact with each other for the next five years – but I’m used to that kind of follow-up care because I’ve been going through that ever since I got my AAA repaired way back in 2012 which, incidentally, was a leap year and I had the procedure done on 29 February… and this year is a leap year so I’m having a laughing good time to think that it’ll be 12 years since the initial repair was done but it’s only been 4 years, too.

I just want and need both of us to get back to feeling better and getting back to our idea of normalcy. I want and need to be able to eat more than soup and to drink more than just water and to do those things without pissing my throat off. Seven more days and the treatment phase of this will be over and the healing phase will begin. I want the subsequent testing I’ll have to go through to show that the cancer is gone and it’s going to stay gone because this is one of those things I hope to never go through again.

Seven days. A four-month journey of treatment coming to an end – knock on wood – that feels like it’s been much longer than that. They say that time flies when you’re having fun, and it also flies when you’re not having fun and, well, I’ve not been having fun and I’m sure my lady feels the same way.

But this, too, shall pass…

 

Living With… Stuff: 10 February 24

The cumulative effect of the radiation has caught up with me; my throat is so sore that I don’t want to swallow anything but, yeah, not getting away with that one. Funny that I can have a nice bowl of Progresso’s broccoli and cheese soup – with bacon – and my throat loves it and getting it down isn’t a problem… but let me drink some water and it feels like my throat’s being ripped out.

My oncologist prescribed “magic mouthwash” and had me wondering what was magic about it and I learned that part of the magic is that you need a pharmacy to actually make it for you – and they can’t do it ahead of time, either. I asked Copilot what magic mouthwash was, and it can actually be a combination of several medications and depending on what a doctor is trying to take care of.

Mine has an antacid, diphenhydramine (an antihistamine) and lidocaine and it does make my throat feel a little better although I can’t tell you what the pinkish stuff tastes like – it tastes like soap to me but has hints of Pepto Bismol, which probably accounts for the color of it. And I better understand the baking soda thing they wanted me to do; when I’m drinking water, it acts like it has an acidic taste to it which, of course, isn’t the water but whatever shit is going on in my mouth. Alas, just rinsing my mouth with it shot my BP up rather alarmingly so… magic mouthwash.

My nose is running like I have a head cold and I have sore throat like I have a chest cold, and I do have to take cold medicine at bedtime and sometimes during the day; skipping it means I’m going to be miserable through the night and isn’t it interesting that when I’m lying down, my throat doesn’t hurt all that much? I think so because I have no explanation for it but since I’m not always lying down, maybe you can imagine how miserable my throat gets to feeling.

I try not to hit the Biotene all that often because my mouth gets so dry that it’s absorbing the sorbitol in it and… making my bowels somewhat loose. Not full diarrhea but loose enough that, well, let’s just say it might not be a fart and leave it at that, shall we? Through it all, I hang onto the knowledge that I have twelve business days of treatment left and I suspect it’s going to be the hardest twelve days of the treatment regimen.

My radiation team encourages me every day, reminding me that this is almost over with but it’s hard to be “positive” when your throat feels like a pissed-off lion is using it for a scratching post. Others who have gone through this same treatment regimen have been supportive as well. This is one of those things where just because they tell you it’s going to happen doesn’t make it real… until it does happen – and here I used to think that having a trach in was the worst thing ever.

Don’t get me wrong – that thing was a major pain in my whole damned body and right along with the oddball shit I experienced with it but at least my lady could take the inner cannula out and things would feel a little better while she cleaned it and got it ready to be reinserted. Even with the magic mouthwash, any relief from the soreness is less than temporary – like the numbing effects of the lidocaine only lasts for maybe thirty minutes at best – and I can only take it every three to four hours.

And I have to keep remembering that this is radiation damage and not your run of the mill sore throat. My immune system is still out to lunch, and I don’t have an idea of how long it will take for it to rebound and for certain blood values to return to normal so I can get the anemia monkey off my back, but I’m actually tickled that the values for my kidneys are looking very damned good! I’m thinking that my nephrologist is gonna be happy about that.

The neuropathy in my left hand and foot is being held at bay; it doesn’t feel like my feet are being beaten and while I know that the neuropathy that was present after my stroke isn’t likely to go anywhere, I sure do hope that this chemo-induced version goes away because having it on one side of my body is bad enough. None of this stuff is depressing me but it sure does have my attention because these symptoms aren’t to be ignored and I do have some fun giving my tech da bizness but they always get even when they put the mask on and I do give them props, not just dealing with me but seeing all of the patients they wind up seeing during their shift.

As I sit outside Infinity I and wait for whoever’s in there to get done with their zapping, I do see them when they come out and some of them have a look on their faces – and body language – that I now know well because they look the way I’m going to be feeling in, oh, about ten minutes or so. There’s this one be lady who I think is just starting her radiation treatments and when I see her waiting in “the hot seat,” she has that look of trepidation on her face and the same one I had during my first days – and I always try to give her a smile as I leave the room and, yeah, like I was, she’s in no real hurry to get on the table and I said to her the same thing someone said to me: ”The sooner you get in there, the sooner you get out of there!”

Twelve business days left. I think it’s hard to see that light at the end of the tunnel when you’re in the tunnel every day; it’s like driving through a tunnel and you’re stuck in the slow-moving lane that’s just creeping along. You know you’re gonna see the light and get out of the tunnel – it just ain’t happening fast enough. Monday brings back the full monty and a long day for me – lab work, oncologist visit, chemo, and radiation and after this coming Monday, I’ll only have one last Monday like this which suits me fine because I’ve come to hate being stuck in the back of my hand for infusion.

There will come a day when all of this will be a fading memory; that day hasn’t arrived yet so I gotta hang tough…

 

Living With… Stuff: 04 February 24

One of the things that keeps my head out of the dark places is noting how funny or weird some of the things I’ve experienced has been, like, when I had the #8 trach in that has a collar, my nose was disconnected from the process of breathing, only to return when I got the #6 trach without a collar. Even funnier, I hadn’t even noticed that my nose was disconnected until one day, I’m lying in my hospital bed and kinda/sorta watching TV and I was scratching my nose and only then noticed there was no breath coming out of my nostrils.

I found that hilariously interesting even though I had no idea about collared trachs but I did reason that having the trach had something to do with it. Now, I’m… tasteless which, of course, has nothing to do with my character but bluntly literally so… with some exceptions.

As I mentioned the other day, I had a quart of wonton egg drop soup and I could taste the egg drop soup but not the wontons, which had the mouth feel of uncooked dough (but I know the wontons are cooked). I was sipping on some Gatorade G2 and, okay, it was “bad enough” that it had less sugar than regular Gatorade and had some “not real sugar” sweetener shit in it, but I had to stop sipping on it because what I could taste was beyond terrible.

Indeed, a lot of my favorite things to eat and drink joined the G2 on the “do not consume” list because, um, because they just didn’t taste the same – but I was told that the radiation would whack my sense of taste and it’s still one thing to be told this, another thing to actually experience it and I can tell you that it is a bitch to have to force myself to eat or drink something that, for lack of a better word, tastes crappy. I’ve been drinking Carnation Instant Breakfast drinks for breakfast and, by the way, the cookies and cream flavor does not taste like cookies and cream – but it does taste like chocolate… a little and that was before my ability to taste went bye-bye. Now? It strangely tastes more like chocolate than it did before!

But the strawberry flavor, which tasted like strawberries before loss of taste, didn’t even taste like it was sweetened (and it is). I found out that I can’t taste salt when I made a pot of soup and other salty things I’ve eaten since then has borne out that I can’t taste salty and can barely taste sweet… but I sure as fuck can taste bitter and sour seems to be fighting a losing battle to remain on the scene.

I take Mucinex for this stupid cough I have thanks to the sore throat and that shit tasted nasty before any of this happened… and it tastes twice as nasty now and like it’s the only thing I can taste. The medication I take for thrush had this weird orange kind of taste that’s familiar but not that great of a taste to begin with… and now, I can’t taste it – but I do feel it when it hits my throat. I like tomato basil soup but now, all I can taste is the acid in the tomatoes which isn’t fun; the cream of mushroom that I’ve always liked barely tastes like mushroom, but I also like cream of broccoli… which tastes like cream of broccoli and even the kind that’s cheesy.

And all I can do is laugh about it despite it not being a laughing matter and more so when my coffee tastes like… I have no idea what it tastes like now but it makes me not want to drink it and therein lie the real problem: Not wanting to eat or drink because I can’t taste it or it tastes unpleasant and one of my mandates is to eat and stay hydrated; to eat good foods so I can keep my weight up even though, technically, I’m still about 15 pounds over my ideal weight and doing that gain a pound, lose a pound thing that’s considered to be normal.

Yes, I know what I have to do; no, I sure as fuck don’t want to do it because of the tasteless thing but, also a big no, I don’t want to bring the feeding tube into play, either since we already found out that the, ugh, nourishment for tube feeding doesn’t want to flow into the tube all that well and… wait for it, the nourishment is made by Abbott Labs… which also makes Carnation Instant Breakfast. I have cartons of the stuff that’s in the exact same packaging as the instant breakfast and it’s not by coincidence, as I learned and if you’re wondering, the nourishment version… tastes meaty and like someone pureed a steak and put it in a package.

The way to avoid the feeding tube debacle is to… eat normally but, yeah, enter the sore throat that actually doesn’t bother me… until I swallow. As long as I’m not swallowing, it’s like my throat doesn’t hurt and my brain says, “Well, don’t swallow, dummy!” and its right – kind of but not even close since eating normally requires swallowing the food – and swallowing is… uncomfortable and, really, not too unlike having a sore throat when you have a cold… except, I don’t have a cold. Or I’m sure I don’t; something I’m taking is probably giving me “flu-like symptoms” which isn’t helping the radiation-induced sore throat thing one bit and when you put all of this together, I could be a whiny little bitch about all of this…

And I choose to laugh about it because if you don’t consider why I’m experiencing this stuff, it is funny. What isn’t funny is one of the things the team said to do about my throat: Rinse/gargle with a solution of salt and baking soda and the only thing it did was make my BP run unusually high for me and enough so that my home nurse suggested I get back on my BP medication. I mentioned this to the team and they were like, “You’re not supposed to swallow it!” and I give them my very best “annoyed duh look” and told them that I’m not swallowing it… but it’s being absorbed by my mouth just the same and, oh, now they get it and I really didn’t want to explain the science behind this to some people who should have learned how and why this is possible.

I’m not trying to have high blood pressure because I don’t want to risk having another stroke; I do rinse/gargle with warm water which my poor throat likes, followed by some Biotene which, back to being tasteless, I can’t taste (a) the sorbitol that makes it sweet or (b) the mint flavor of it but it does the job of “rehydrating” my mouth. And all I can do is to keep laughing about all of it.

Oh, and sorbitol… gives me the runs. Add that to my list of funny shit.

I just keep laughing and grinning because the alternatives are too depressing, and they serve no purpose to begin with. Stay focused; eye on the prize; do the things I can do and beginning with finding more stuff I can eat/drink that’s going to taste like something I want to eat well, wait, everything I can eat or drink is stuff I want to eat but “want” takes on a whole new meaning when you know what it’s supposed to taste like and it tastes like… nothing or something indescribable.

And definitely tastes undesirable. It’s a “circle of hell” for those of us who love to eat, for those of us who love how the taste and feel of our favorite foods just makes us feel alive and comfortable and everything is okay in the world because, well, yeah – bacon, for instance. You feel me, right? The radiation has effectively taken away one of life’s pleasures and all I can do – all I want to do – is laugh about it because being upset by it, again, serves no purposed and detracts from the job at hand:

Beat the fuck out of this cancer. Let’s get to the end of all the treatments so I can begin the task of recovering from being treated. I write about this not to bitch and moan about having cancer; I want to bring awareness of my experiences being cured of it and the unique shit I went through because of the cancer. It’s not to say “don’t get cancer” because you can do everything in your power not to get cancer… and still get it and it’s no joke and neither is the treatment of it; between chemo and radiation, it’s put me through some changes that I still think are hilarious… like no body or pubic hair. My beard is trying to come back but I think it’s losing the battle and instead of it being predominately black, what’s coming in is… as white as the driven snow that I can’t stand.

Some “Just For Men” might be in my future and I do laugh at how vain this sounds even to my own ears – but you wouldn’t get why it does because you didn’t know my mother or her mother or my baby sister. Better to laugh at being as bald as a pre-puberty kid while being damned near 70 years old. If that doesn’t strike you as funny, I don’t know what will.

I gotta go to the store for some stuff and, oh, yeah, Monday’s coming and the merry go round gets cranked up again and gets me closer to the end of this and I’m sure I’m at the part where I have to stay in good spirits, keep my head held high, all that other good motivational stuff and, yeah, to keep laughing because this shit is funny even though cancer is no laughing matter.

 

Living With… Stuff: 26 January 24

Well, I’m into the side effects portion of the program and, at best, they are annoying, like having a sore throat and like you’re in the beginning phase of getting one. I woke up this morning – and at 0600 – and one of the first things I thought about was something my late sister said when she had breast cancer and was going through chemo and radiation and telling me how bad it all made her feel.

I think I’m understanding what she meant. See, it’s one thing to talk to someone about how all of this makes them feel and you’re kinda disconnected from it since, obviously, you’re not going through what they are, and a lot of people tend to say that they can’t imagine what it’s like and all of that and it’s understandable because there’s no way to imagine it. I couldn’t imagine it when she told me how she was feeling… but I know it now.

I already had neuropathy on my right side due to the stroke; the chemo has given me neuropathy in my left hand and foot… and upped the ante on my right side and it felt like someone was beating my feet with a stick; when your feet hurt – and I mean they really hurt – that pain can drag you down in a hurry but talking to the palliative doctor provided at way to, at the least, take the edge off via a transdermal patch that’s an opioid but one I can apply at a low dose and not be impaired or spaced out. The neuropathy’s still there but my feet aren’t killing me and interrupting my sleep.

None of what I’m experiencing is a surprise since they told me what to expect; now it was just a question of how bad things were going to get. My throat is sore but not the “oh shit, I wanna rip my throat out” kind of sore and then, if that wasn’t enough, my mouth gets dry, and no amount of water seems to get and keep it wet – but I ordered some stuff from Amazon to deal with that.

I can tolerate the sore throat except when they slap the mask on me because one of the edges of it rests right up against my Adam’s apple and, well, the mask makes swallowing interesting to begin with but even with the slight pressure against my throat caused by the mask, I have to concentrate on being able to swallow and, yeah, just like I have the worse sore throat ever experienced by humankind.

Every time I sit up on the table, I feel like I’ve been mugged. Today, I felt like I hadn’t left the room; not that weird deja vu thing but that “didn’t I just get done doing this?” feeling that just makes you feel some kind of way or, as my lady accurately said, “It’s like going to work!” and going to work at a job that you don’t particularly like but you need it.

The fatigue isn’t that bad, and it’s not been unusual for me to come home from chemo or radiation and take a nap but I can feel it like it’s a bone-deep ache… and it probably is but it’s not kicking my ass all that badly; when I was working, there were too many days when I felt like I’d been ridden hard and put away wet and I still had to get up and get moving so this isn’t all that different and, yeah, I find myself living for the weekend – again – and getting that look on my face knowing that Monday is coming.

My sense of taste has checked out; I can taste stuff but it either tastes weird or doesn’t taste the way I expect it to or, what really gave it away was making a pot of chicken soup and I’m tasting it and, no, it doesn’t have enough salt in it so I’m adding salt; I mention to my lady that I think it still needs salt; she tastes it and tells me that the salt level is fine and my brain goes, “Uh-oh…” because I can’t taste it. I drink Gatorade as well as water and, normally, I can taste the salt in it because it’s one of the electrolytes in the drink, but I slug back some Gatorade now and… I can’t taste the salt in it, and it makes the Gatorade taste “funny” when, in fact, there’s nothing wrong with it.

All I can do is laugh at this stuff and do a lot of grinning and bearing and keep pushing toward the end of the treatment. My sister would speak of how her treatments were messing with her and all I could do was nod and try to understand what she was saying but, yeah, I know what she meant.

I was leaving Infinity I and saw a man sitting on the “on deck” chair and waiting for me to get done and as I walked through the door, I looked at him and… he looked the way I felt. Tired. Aggravated. Annoyed. He lifted his head up and saw me; we recognized each other and greeted each other and with me saying, “Your turn!” and he laughed a little and said, “Yep, and it’s finally Friday…”

Yes, lawd, it’s finally Friday. This really does feel too much like working but doing it when you’re not really feeling at your best, but you know you gotta get off your ass and… go to work.

 

Living With… Stuff: 23 January 24

Strangely, my day started at 0600 or thereabouts; I didn’t have to be up until 0930 but… I farted and it smelled so bad it woke me up and I couldn’t get back to sleep because I cut loose another silent but deadly and I got up to ponder what crawled into my ass and died.

I’m surprised those smelly fuckers didn’t wake my lady up. I’m washing up; I actually shaved the peach fuzz growing on my face and head since I’m going to lose it again anyway and I even trimmed the edges of my stache, which is so… light in color it looks like there’s no hair on my upper lip. I just sigh because to do anything else doesn’t make sense – except I sometimes laugh at my reflection in the mirror because I look like myself and I don’t; the scarring left by the immunotherapy drug is slowly fading away and I do mean slowly like molasses at Antarctica.

It irks the shit out of me that it makes me look like I had the worst case of acne known to man when, in truth, I never had acne. Between the Cerv Ve and Eucerin lotions I use, it’s clearing up but never fast enough to make me happy because it’s part of the situation that makes me not look like myself. I don’t think I’m that vain but, yeah, the scarring pisses me off and I keep telling myself that it’s really part of the price to be paid to get cured of this fucking cancer.

My RO is happy with my progress and has ordered the PET scan that will, hopefully, get a week taken off of my radiation treatment.

On the table, bit in, mask on and latched down, three passes, out the door to get dressed and talk to my RO, which lasted all of maybe five minutes and at least he looked in my mouth, said I didn’t have thrush, and felt my neck up so thoroughly that I was thinking about him having to take me to lunch or something. I know he’s feeling for tumors or the remnants of the tumors I had in my neck; the big one disintegrated and almost took me out but there was the one on my right tonsil that, if I shook my head, I could feel it moving around in my throat – and I can shake my head now and I don’t feel it.

He’s happy; the PET scan will be scheduled, and they’ll let me know when I need to have it done. Next will be arranging to have my PEG tube removed and I’m curious as to what has to be done to get it out…