Living With… Stuff: 30 March 24

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

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

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

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

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

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

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

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

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

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

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

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

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

Oh, hell, no…

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

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

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

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

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

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

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

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

 

Living With… Stuff: 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: 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: 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: 22 January 24

My day started at 0645, quickly getting my shit together so we could get in the wind at 0730 and after deicing the car. Traffic was a bit of a bitch but that was expected given the time of day and there were icy patches here and there along the way and people just drive like they own the roads and can drive any fucking way they want to.

But we arrive at the cancer center safely and make our way inside and up to the third floor neither of us have to tell the girls at the desk my name/birthdate; one just says, “I got him… infusion today… and he’s checked in!” I’m thinking you’ve been seen in a place for too long and too many times when they know who you are. So, we take seats – my walker gets another set of compliments from some folks who are already waiting and I’m waiting to be taken to a pod. Here’s a pic of it:

And, yes, I got the red one. You can get one on Amazon for $159.99 and here’s the description: ”HEAO Rollator Walker with Seat for Seniors,4 x 10″ Wheels Upright Walker with Shock Absorber, Padded Backrest and One-Hand Folding Design, Lightweight Mobility Walking Aid with Handle to Stand up, Red”

I’m usually in Pod 2 which is fairly in the middle of the infusion room; I’ve been in Pod 3 but didn’t get infused in Pod 1 because my blood work was wonky. Today, I’m in Pod 1 and sitting in the same seat I sat in when I didn’t infused and my lady is hanging with me today; she gets to watch me go through the whole protocol from being dosed with my pre-infusion meds to watching the timer on the pump as the last drops of the last bag of chemo med empties into me.

I asked her a few times if she found it exciting and, yeah, we both know I’m being funny because this is pretty boring once you get past the part of them finding a vein and stabbing me in it. Today had a little “excitement” – the internal pharmacy’s computer system was misbehaving, and it was taking some time to get my meds together but it happened, I got my pre-meds and, for a change, the nurse gave me my Benadryl via syringe instead of in a bag and while it kinda made me sleepy, I was awake for the whole infusion which was different for me.

My lady and I talked about this and that and even played “What’s for Dinner?” She’s… been a real trooper throughout this whole thing and she could have dropped me off and come back for me later but, no – she stayed for the whole thing, and it had to be boring for her. I did have one “bad” moment with my IV; I had moved my hand from under the blanket and… one of the ports came off and there’s blood “all over the place!” I manage to hold my hand over the trash can while my nurse came over to fix things and to clean my hand up and we’re speculating that the piece either came loose or wasn’t screwed down tight to begin with and whoever puts these things together for them, well, they got thrown under the bus and, frankly, I didn’t blame her for any of this and I would have thrown whoever put the thing together under two buses then backed up so I could run them over again.

Clean the blood off of my hand, get me a new blanked – the part was replaced and really screwed in tight and… the infusion continues. My lady was tickled that the nurses wanted to squeeze every last drop of medication out of their bags and into my arm and I’m “giving them da bizness” for it and good naturedly so. The last bag is emptied, I get disconnected from my IV and bandaged and… now it’s time for the long hike to the radiation center.

It’s not that far, to be honest. Take the elevator to the first floor, turn right and just follow the hallway until you eventually go from the west side of the center to the east side; scan my card, and… we’re waiting for an hour. My lady goes to the front to find out what the problem is, and she’s told that one of the Infinity machines is having a problem, support is working on the problem, sorry about that but they’ll get to me as soon as they can.

They eventually do and I go to the back to do the “get undressed and in a gown” dance and take a seat in the dressing area to wait for someone to come get me… so I can sit outside of the Infinity I room and as I cool my heels sitting there, I learn that it’s the Infinity machine that I’m assigned to that’s having problems. As I sit there, I can see the “Beam On” light coming on and I hear the techs at the desk telling the occupant to take a deep breath, hold it, and then breathe so, well, it seems that this part of the machine is working.

A support guy shows up and talks to the techs and says something about a camera and resetting it – but after they’re done with patients because they need to get into the ceiling to reset it and… I’m not sure how or why one misbehaving camera is causing problems since there are three of them in Infinity I but I do get it; the machine isn’t working right and it’s a serious kind of machine and everything about it has to be in perfect working condition.

I see the tech go into Infinity I and come out with a mask that suspiciously looks like mine and, yeah, it was my mask as she comes back moments later to tell me that I’m going to the second Infinity machine in Infinity II and not to worry since it’s the same machine. It was… kinda weird because I’m used to coming into Infinity I from a certain direction and the table is on my left when I go to sit down prior to lying down; the table in Infinity II is on my right and it does throw me off for a moment but the moment passes, the techs get me squared away properly on the table, the bit, which has been wettened with water as to be more comfortable in my mouth goes in and, yeah, that does feel better and… on goes the mask, yes, I know, tilt my chin up while listening to the two techs nattering about getting their side of the mask locked in place and… it’s showtime!

It’s the same machine in a different room and I must be getting used to this because I feel momentarily out of place because this isn’t my Infinity machine and it’s not my Infinity room and these are not my techs although I’ve seen them in my other trips to the treatment area.

Three passes and we’re done and one thing I noticed as they helped me to sit up and I waited for the room to stop spinning was that I didn’t have that… feeling of “dread” over having to be here tomorrow and as I’d been having since Day 2. ”Dread” is the wrong word; it’s more like trepidation with a touch of deja vu and my brain refusing to accept that, yeah, we’re doing this exact same thing tomorrow and today, I think my brain finally rolled over and exposed its belly because I didn’t have that feeling as I grabbed my trusty “Rolls Royce” of a walker and made my way to get dressed and gather up my lady so we can… stop at Wendy’s on the way home so she can get something to eat and I’m totally onboard with, too.

Another day in the books; I’m not really thinking about how many days I have remaining and… I’m getting used to this. But, for the record, I’m technically into Day 11 of phase two of my treatment but things got screwed up by MLK’s birthday and this past Friday’s snowstorm and one I wasn’t of a mind to be playing around in. My lady and I felt that I could have made it there, but it would have been the ride home that would be problematic and… yeah, was not feeling that – and I know how stupid my fellow state and county residents can be when there’s significant snow falling and on the ground.

Radiation only tomorrow; hopefully, they’ll have Infinity I’s machine purring like a kitten again and the routine will be more routine.

 

Living With… Stuff: 19 January 24

Welp, today was a washout; there was no way I was going to be out there playing in the snow, so I cancelled both my radiation and chemo appointments for today and now I’ll have chemo on Mondays instead of Fridays. Fine with me – better that than to be stuck in traffic with a bunch of people who don’t seem to know how to drive in snowy conditions.

It’s been at least three or four years since the last time it snowed more than a dusting on the grass and everyone’s been saying that we’re long overdue for some heavy snow, but I’ve been inside while watching it snow to the tune of thirty or more inches of the dreaded white stuff so a measly four to six inches has a long way to catch up.

And like I’ve told some people, I’ve been in Utah in the winter; four to six inches in Utah is a dusting and deemed to have not snowed at all.

In a way, missing today’s session, while “bad,” was also quite good because I got to catch up on some more meaningful sleep – but Monday is going to be one of those stupid early days and I have to be at the cancer center at 0800 for chemo first, then getting zapped at Infinity I, which is the room I go to that’s named for the Elekta Infinity machine, which I gotta admit was impressive to see… at first.

(Photo courtesy of Elekta, the people who makes the machine)

It’s something else to be in my mask and it’s locked down to the table (along with my shoulders) so that this amazing machine can perform its precision work. All I can do is lie there, my mask nearly painfully pressing on my head and face and watch the four parts of it rotating around me; the part where you see “Elekta” in the picture is the radiation emitter, which is mirrored and there’s an interesting green… something I can see as it passes over my head and giving me a brief chance to see myself locked into the mask and with that damned bit in my mouth.

Oh, and in between the various parts orbiting my head, consigned to only being able to look up at the ceiling and seeing the positioning laser, which I guess they use in conjunction with my tattooed dot to position me onto the table and exactly where I need to be. When they have to move me, they’re often literally talking millimeters.

I thought I imagined the table moving while the treatment was in progress; come to find out that I wasn’t imagining it; the techs, who are outside of Infinity I and watching me and the machine’s progress on big monitors, can make minute adjustments to my positioning by moving the table – it’s just so subtle that I’ve felt myself moving… but it didn’t really feel like it.

I would say that it’s something you’d have to experience to understand what I just said but, nope – I do not recommend it since it would mean that you’re being treated for some kind of cancer that only an Infinity machine can deal with.

Three passes of the machine later, I’m getting unmasked and helped to sit up and they tell me that my treatment is ten minutes long but sometimes it doesn’t feel that long and sometimes it feels like it’s longer than ten minutes but, in reality, without my watch or being able to see a clock – and I don’t think there’s on in the room, I have no idea how long I’m lying on the table and trying to swallow and remaining cool and calm at the same time.

I’ve said that I’m not claustrophobic… but I can understand how being locked in the mask could and would set off a claustrophobe even though the mask is a mesh, and I can see whatever’s in my field of vision with my head on lockdown and I can breathe easily enough.

I hold onto the foam ring they give me to hold onto and will myself to be relaxed and still – let’s not get freaked out over the mask and the way it’s pressing into my face; this will be over soon enough, and I can get dressed and go home… to start catnapping. It’s… emotionally tiring although it’s said that fatigue is one of the side effects of radiation therapy and, curiously enough, I’ve gone from not being able to sleep well because of the trach to waking up feeling tired… because my feet hurt and because the chemotherapy has injected some neuropathy in places I didn’t have it before – and is making it worse where I did have it already.

I feel like someone’s beating my feet with a stick. There was some serious edema involved at first but between some Lasix and full CopperFit compression socks, it’s been mitigated and, at first, I thought that my feet were killing me because of the swelling… but my feet don’t appear to be all that swollen anymore which leaves only one culprit and I know all too well what that “numb and cold” feeling in my left foot feels like because I’ve felt it in my right foot since 2006.

I’m feeling it in my left hand and feeling it worse in my right hand but it’s not as bad as how it feels in my feet, but I actually understand why it feels so bad: My feet are the furthest from my brain. Hopefully, the medication my palliative doctor has prescribed will, at the least, take the edge off of this maddening painful feeling, which will make going to sleep – and staying there – easier to do. Yeah… if it’s not one thing, it’s another but I remain upbeat because the alternatives can be a lot worse.

Yeah, that sound you just heard was me sighing and something I really have been doing a lot here of late. I still have a follow-up to do with my orthopedic doc; I still have to get with my cardiologist, who I’ve not even met yet; I still haven’t made that appointment with the urologist about my kidneys, and I wonder if my nephrologist is surprised that my eGFR has been going up instead of down? As of yesterday’s testing, it’s 67 when, before the shit hit the fan, it was 45 and holding steady. I won’t see my PCP until the end of the month and my nephrologist until February and I have an upcoming CT scan and exam with my vascular surgeon sometime next month and… just busy.

And today’s snowstorm is going to make me even busier having to play catch-up. Snow, snow, go away and stay away until I get done with my treatments!

 

Living With… Stuff: 13 January 24

I woke up around 0810 and thinking that I had treatment today until I woke up some more (so I could pee) and realized that this is a day off for me and… I didn’t quite know what to do with myself.

I tried to stay in bed a little while longer but I couldn’t so I got up to start my day and it really hit me how my routine has changed since the trach was taken out. With it, man, I had a lot of stuff to do just for that and not to mention what I had to do with my PEG tube and even what I do for that got ‘better’ once I got some protective discs to put under it instead of the fenestrated gauze (and they’re washable!).

Now I take off the old disc, hit the area with hydrogen peroxide diluted with a little water; wait for it to dry, put on a new disc and… no trach, so nothing to do except skip right to washing my face and head since the chemo-induced acne spread to my head as well.

But before washing my face, I gotta flush the PEG tube. I fill a container with warm water and use a syringe to draw 30-35ml of water and, interestingly enough, this is usually my first drink of water for the day. I slowly depress the plunger and look for…stuff that has found its way into the tube and making sure it’s not getting stuck; I disconnect the syringe and sometimes use the remaining water to flush any… crust stuff from where the ports are covered.

Then, wash my face with a soft, disposable cloth and oatmeal soap and wait for it to dry so I can slather on a thin layer of either Cera Ve or Eucerin lotion, depending on which one I want to go with. The Eucerin is… oily and is thick in consistency and it makes me have to wash my hands twice where the Cera Ve is light – not oily – and feels better going on my skin – and I only have to wash my hands once to remove any excess.

And… that’s it. I was spending maybe five to ten minutes cleaning around and under the trach and inside the trach, too; getting the secretions that collected there overnight was challenging and I was going through cotton swabs something fierce just doing that.

And doing it without pissing the trach off and setting off major coughing fit, not to mention any pain I’d accidentally cause myself hitting certain spots with a swab tip.

Next is… taking a shower. I haven’t showered since October last year and standing at the sink and taking a bird bath is okay but not ideal but now that the trach is out and the stoma appears to be healing over, man, it’s gonna be great to shower again!

Just a bit weird to wake up and not getting ready to head out to get irradiated…

 

Living With… Stuff: 12 January 24

I knew that the alarm on my iPad was set for 0630 and I woke up at 0545. I just laid there until I eventually kinda got up because I had to pee and waited for the alarm to go off and… we’re off and running.

Had to deice the car, which took a moment but not so long that we didn’t get to the center on time – but it’s another reminder of why I don’t like cold weather. Now I gotta break out my “Rolls Royce” walker, which I did when going to chemotherapy the first time; admittedly, it’s an eye-catching red and has some cool “mag” wheels and, oh, yeah – it has shocks. The Triad, which I will start calling the three techs, wanted to know if it was new and I told them it wasn’t but since my lady insisted on me getting a walker, I didn’t spare any expense and got a damned good one.

Almost anything would have been better than the walker the hospital gave me… and I’m all out of tennis balls.

Today, The Triad really locked the mask down on me and, yes, it was damned uncomfortable and yes, they asked me if I was okay, I let them know that I wasn’t and… I sucked it up; I figure that as long as I have enough room so I can swallow without disrupting the target areas, I’m just gonna have to deal with it. I did get through it and I felt like someone kicked my ass.

My lady sees the impressions left behind by my mask and… it makes her laugh, which is a good thing since she’s been a real trooper and going with me for all of my treatments. I get dressed and we make our way down to the other side of the building, hit the elevators, and… chemo time.

In a way, it’s like I never left chemo four weeks ago (give or take a day); I even got my usual assignment in Pod 2 and… I get a woman who I’m thinking is new – I didn’t recognize her – and she had… a moment or two getting me ready to be infused, like, ouch, sticking me and not really hitting the vein she was aiming at, which made the guy “overseeing” her step in and he placed the IV in the one place I never liked getting an IV: At my wrist. He jabs me and, yep, it hurts like a bitch and now I get to sit there while they put together all the stuff that’ll be going in my arm.

I know the IV version of Benedryl is going to put me out for a few and that’s one of the things I actually looked forward to going to chemo – being able to take a nice, long drug-induced nap under a nice, hot blanket and my favorite playlist sounding in my ears. I didn’t note what time they got the drugs going but I was asleep before I got to the fifth song on the playlist: Phil Collins’ “I Wish It Would Rain Down;” I love the drum track (which I learned to play), the bass line, and Eric Clapton just add some sexy shit to the song which has lyrics that I like to sing along to… but not today.

I woke up at 1030 and I probably wouldn’t have if my right foot hadn’t started to hurt – and a sign that the Tylenol I tool before we left has worn off. I drank an Ensure and inhaled a Gatorade and snacked on some Mexican street corn flavored Crunchy Cheetos and, man, they are good! I even got a text from my youngest son, who vacationing and was at the aquarium in Monterey, California, asking me how I felt; I told him that I’d just woken up from my chemo nap.

In all honesty, I felt so good after my nap that I almost forgot that I had my radiation treatment. Almost. The good thing is that the first five days are over and done with and I don’t have to get back on the merry-go-round until Tuesday – but that means I’ll be getting a double radiation treatment next Friday to make up for the one missed due to Dr. King’s birthday.

 

Living With… Stuff: 12 December 23

Today was my last chemo treatment; I got to ring the Zildjian mini-gong (with the matching mallet at that) instead of a bell and the name isn’t unknown to me as a drummer since Zildjian makes the best cymbals on the planet and for acoustic drums, I won’t rock with anything less than Zildjians. They are not cheap cymbals price-wise but they are well worth the expense.

One of the patients sitting behind me was having some kind of problem that required EMTs to show up to transport her over to the ER. I don’t know what happened – maybe a bad reaction to her chemo meds? – but I was coming out of the rest room when the EMTs were coming through with the stretcher and their gear. What I do know was the poor woman was having a full-blown panic attack over not being able to breathe and, yeah, I remember what that was like and calling out over and over for someone to help me – except, they couldn’t hear me because of the trach I didn’t know about at the time.

My own treatment went boringly well. I told my lady, when she came to get me, that if I didn’t have my music, I would have lost my mind just sitting there or dropping off to snooze for a moment. There was an older lady sitting directly in front of me who broke out her crocheting gear and started working on something, which I thought was cool and is a good way to pass the time. One thing that had me scratching my head was that the last chemo med comes with the effect of being a vascular irritant, a fancy way of saying that when the med hits your vein, it burns like a motherfucker and his cousins, two pissed-off bitches.

Here’s what has me head-scratching. I’ve had this medication six times and in five of those times, there was no vascular irritation but that one time? Holy fuck. I’m just glad that the IV wasn’t in the back of my right hand; between the forest fires in my vein and my neuropathic pain, shit would have gotten pretty ugly. All the nurse could do was wrap my left hand in warm compresses that did knock down some of the pain but not all of it and I spent… three hours grinning and bearing some nearly unbearable pain.

Why no vascular irritation five out of six times? No idea. Other than this damned acne-like rash on my face – and the chemo doing weird shit to my blood chemistry – I haven’t felt any side effects or adverse reactions, knock on wood. Given what that irritation feels like? I’m not fussing about only feeling it once. Now, it’s break time. I don’t see the radiation guy until the 21st now instead of the 14th; we’ll find out what his plan is going to be and what’ll have to be done before that first treatment, i.e., some kind of scan that might be similar to a PET scan.

We’ll see. Honestly, I’m not looking forward to this; I’m not exactly in a rush to get this over and done with because Dr. Park almost assures me that things will get worse before they get better with the radiation and, yeah, my lady asked if there was a pill that could be taken in lieu of the radiation and, nope, there sure ain’t. Wasn’t going to blame a girl for asking one bit.

This clearly falls under I don’t like it one bit – but it has to be done just the same.

The replacement trach showed up today. Its inner cannula is… disposable, not reuseable. I’m not sure if Dr. Amin ordered one that has the disposable cannula or this is the “only” #6 trach AdaptHealth had in their stock/inventory but we don’t have a supply of the disposable cannulas, which may or may not hold up replacing the #8 with the #6 – we’ll just have to wait to see what they say when my lady calls to (1) tell them we have the trach and (2) they tell us when to come in for the replacement.

Had to figure out the difference between a cuffed trach and a cuffless one; the #8 I have in is cuffed because it has the little doohickey I was told was necessary when you’re trached and on a ventilator, which I was on one. I’m probably wondering the same things my lady might be; first, why didn’t they change the trach out before I was discharged and if not, why didn’t they send me home with the same #8 I had installed as a replacement? Moot questions, I suppose but when you’re dealing with a medical system, the left and right hands don’t always talk to each other, let alone speak the same language.

And if my trach hasn’t been causing me enough grief, my PEG tube is starting to give me pain I don’t need and now I’m… concerned. I’d been wondering about the two “buttons” on either side of the actual tube and where it goes into my body. Come to find out that there are 2 external buttons and matching internal ones and their purpose is to keep the main tube from turning, which isn’t necessarily a good thing although, in some of the care instructions I read, you’re supposed to turn it to keep it from being in one place and… I didn’t know that until a hour or two ago – and because I wanted to know what was up with the two buttons.

I was told that if one of the falls off, eh, don’t worry about it. The one of the left came off and I was like, “Oh, okay, well, they said it might…” but today I learn that what I should have done the moment I saw it wasn’t in place was to let the doctor know so it could be put back! Well, ain’t that about a bitch? To me, it seems like the one on the left fell off and now the one on the right is painful to the touch. My lady told me that the PEG people said to call them after the first of the year but I’m gonna have to get her to call them like tomorrow to see if the missing button is a problem and what’s up with the painful remaining button. Maybe they’ll want to see me before the first of the year…

While I’m undergoing chemo, the nurse that calls me about my kidneys called and, to be honest, I’d forgotten that she would be calling today when we rescheduled my last chemo session for today. Not a problem; I had my cell and Air Pods with me and the nurse was given my number and she did call but what was yet another instance of the left and right hands having no clue, the nurse tells me that my cell number wasn’t in my file – but I’ve had other nurses call me on my cell.

She called and woke me up from my steroid and Benedryl-induced nap and all she wanted to talk about was my cancer; I mentioned to her that since I’ve been off my BP medications, my eGFR is in the 70s, which is very damned good since it was hovering around 45 in the past. She had me rolling my eyes scrounging around in my file looking for the stuff related to my hospitalization, and I guess she saw in my file where I coded twice because her whole tone of voice changed to one of great sympathy. I’m trying to tell her that since I’ve been out of the hospital, it’s not the cancer that’s giving me grief – it’s the trach but I thought that reading that I’d coded twice kinda rattled her because she kept saying, “Okay, okay, yeah, um, okay, I see it, I see it…” over and over and no matter the question she asked of me.

Any other time one of these nurses call me, we keep reinventing the wheel because they don’t seem to have references in my file that the things they’re about to tell me have already been told to me… too many times at this point in things. I know that I surprised Veronica when I told her what my recent eGFR result was and, “Okay, okay, yeah, um, okay, I see it, I see it” time as she found the result in my file. I’m supposed to converse with her again next month – and I’ll have to tell my lady about this so she can add it to her “master appointment” document but, at this point, I’m not saying that my kidneys aren’t important because they are and an eGFR in the mid-70s is nothing to sneeze at but getting rid of this cancer takes a bit of a priority.

To be honest, I was really concerned about what the chemo might do to my kidneys but it hasn’t done a thing to them but being taken off my BP meds seems to have done them a really good favor which, in a way, answers a question about whether it was possible to improve one’s eGFR numbers and the answer is… if you’re on a BP medication and something like HCTZ, have your doctor stop them and see if the eGFR numbers improve and stay on the good foot going forward.

Phase One of Kick Cancer’s Ass has been completed. Standing by for Phase Two. Gotta find out the deal with disposable inner cannulas because Dr. Amin has to put in a prescription for them but I’m sure he (nor his people) didn’t know that AdaptHealth would send a McKesson fenestrated trach with a disposable inner cannula. As soon as we can, we’ll find out from the good doctor what he wants to do – go ahead with the replacement or put it off until we have cannulas to work with or do it and have AdaptHealth overnight a supply of them. My research shows that the required inner cannulas come in a box of ten and my current cannula gets cleaned twice a day and… that’s gonna call for a lot of the disposable kind and at a cost that I don’t know about – yet. I can’t wait to see what AdaptHealth is charging me for the #6 or, really, my part that the insurance company may or may not pay.

Again, we’ll see which way the wind is going to blow. I’m hoping the smaller-sized device will cut down on the coughing and more so when my coughing wakes my lady up, too, and it makes me feel terrible because there’s nothing I can do about coughing. Last night, I didn’t use the humidifying machine with the mask; I used the duplicate of the humidifier I have in the living room to hunker down for the night and I’m happy to report that it did cut down the number of times I had to cough and I could sleep better because I didn’t have to be conscious of whether or not the mask was in the right position or its tubing filling with water and making that obnoxious bubbling sound that I know wakes me up and has awaken my lady as well. And I didn’t have to clean a lot of secretions out of the mask which is kinda messy and not easy to do in the dark.

So, now you’re all caught up.