Living With… Stuff: 04 January 24

The trach is out. I even took a pic of the stoma because I’d never seen it and I didn’t think about that when we switched out the #8 for the #6 (but I was told it wasn’t pretty).

It feels funny not feeling/seeing the trach; the doctor says to keep it covered and it should heal over in about a week and if/when I have to cough, just press kinda firmly on the stoma so that it won’t try to stay open. Trying to press on it was… funny; sometimes I got it right, sometimes I’d get “buzzed” as the cough vibrated the gauze pad and, well, trying to find the stoma wasn’t as easy as I thought it would be since I can still feel some soreness from where the trach was in.

The real test came when I went to bed. Lying on my side felt so good! But the cough was still hanging out and we still haven’t figured out that if I had a cold, how would I know it? I woke up three times to spit and kinda woke up a few times to try to press on the stoma when I had to cough but, all in all, it wasn’t a bad night, and it was nice to be able to sleep lying down instead of damn near sitting up.

Now to get ready for radiation. My ENT and radiation oncologist got together and decided that the trach could come out and, as mentioned before, my RO is of a mind that I’m not going to have a lot of problems with the radiation – and I hope he’s right because I don’t want to get trached again because the radiation jacked up something in my throat.

 

Living With… Stuff: 24 December 23

Welp, the package did show up – after we got home – and… no disposable cannulas. They’re on backorder and my lady had to jump through a bunch of hoops to find out that they’re backordered and there’s no telling when they’ll be off backorder but when they do, they will be shipped.

The supplier to us actually suggested that we ask my ENT doc to order and change out my current #6 for one that has the reusable inner cannula; my thought is that if he wanted the trach with the reusable cannula, that would have been the one he put the script in for. So, now my lady is cleaning a cannula that says on the cannula not to clean it – but it’s either that while waiting for the backorder to clear and ship, or do what the supplier suggested.

The new trach had me baffled for a few until I had a “duh moment” and thought about the smaller trach going into the stoma created for the larger #8 trach and, oh, yeah, there’s probably a gap happening and will be until the stoma closes around the smaller trach and, duh, that’s not going to happen overnight. There are moments when I cough up secretions and I have no idea if they’re coming out of the inner cannula or escaping between the gap in the stoma and the outer cannula, which has the effect of secretions going “all over the place” and requiring some extra cleanup. In a way, it’s kinda funny but I’m not sure I can tell you why I find it funny.

With the #8, the “base plate” actually swiveled a little and just enough for me to be able to get a cotton swab behind it and do what I could to clean the skin behind the plate… and pissing the trach off something fierce because while it was safe to clean behind it, it was still a tight fit. I’m not sure if the base plate on the #6 swivels – I presume that it does but for some reason, the upper edge of it is pressed up against my Adam’s Apple and just enough to piss the trach off and get the non-productive coughing started and it’s still a little painful to swallow.

The “upside” to this is it makes the bottom area of the plate easy to clean and there’s actually enough space between the plate and my skin that I can get the tip of my little finger under it, which started to concern me until I realized, duh, oh, yeah – smaller device stuck in a bigger hole so it’s not going to fit the way the larger #8 did. I can clean under the bottom which is where some secretions tend to “ooze” out of and I had to start applying a layer of Vaseline to that part of my neck as those escaping secretions were causing some skin damage, which is helping to prevent any more damage and helping to heal the little spot of damage I’d noticed.

I’m able to put a fenestrated gauze pad to catch secretions in place and without the pad putting pressure on things and pissing the trach off and the pad also gives some protection to the skin of my neck in that area… but not so much for what might be going on behind the plate and at the top; I can clean behind it but very carefully; I gently bumped the outer cannula where it goes into my throat and, well, let’s say we’re not going to do that again but it’s a pain in the ass because that base plate doesn’t move that much to make it easier to clean behind it.

For about ten seconds, I thought about asking my lady to take the trach out and give my skin there a good looking over and so I could take a look, too, and… yeah, no, fuck that; not putting that kind of stress on her and I’m almost sure that I don’t want to see the hole in my throat that badly. I’ll settle for using as many cotton swabs as I need to do my best to clean behind the base plate and without causing myself a lot of discomfort in the doing.

The #8 had me feeling like being throat-punched; the #6, eh, not so much but I have moments where I might turn my head and feel a little stab of pain in my throat; not enough to warrant a trip to the ER, probably enough to mention it to the doctor “in passing” and there’s probably nothing he can do about it since the #6 hasn’t seemed to “settle in” yet and, besides, I’m not seeing bloody secretions or experiencing the kind of pain that would indicate there’s something wrong; a little blood in the secretions, I’m told, is okay and can be expected and every time I cough some out, I examine it for any blood and to make sure it’s not turning a yellowish color and the secretion doesn’t smell yucky, both of which would indicate an infection and, let’s not go there.

The good news is that I’m not waking up every two hours to cough up my toenails and/or to pee so I’m sleeping a little better and can kinda sleep on my side more than I could with the #8 but it’s still taking “a moment or two” for me to get comfortable enough to go to sleep and stay that way for however long I’m going to sleep before I have to pee. Any potential cough still tends to wake me up and if it’s bad enough to make me sit up, well, might as well pee while I’m clearing the “junk” out and taking a few hits off the bottle of water before lying back down and dropping back off to sleep.

And, yes, I’m still acting like a little bitch about taking the cannula out myself, which would make my morning cleanup easier to do when trying to get any secretions in the “mouth” of the cannula that have kinda/sorta dried up but loosens up with some hot water. I know I should do it and having the disposable cannula would make it easier – just take the old one out, put a new one in, keep it moving but, oh, yeah – they’re backordered. I really need to get my lady to supervise me taking the cannula out, cleaning it, and putting it back but I’m not there yet and it’s still like I don’t trust myself to do it although, admittedly, taking this one out is “easier” than taking out the reusable one, which had to be unlocked before removing and that requires a rather deft touch to not piss the trach off and get me coughing up a lung and my gall bladder – and my lady developed that deft touch and her fine motor control is way better than mine.

The disposable one seems easier: Just squeeze the clips to clear where they sit and gently pull it out. Simple, right? Tell my brain that. Yes, it really is that simple but… it’s a trust issue with myself and one that I need to get over and the sooner the better. It’s just that I know how it feels when I accidentally bump the trach or how carefully I have to hold it while my lady changes the collar that keeps me from coughing the trach out because (1) I don’t want to piss it off by applying any unnecessary pressure and (2) I don’t want to fuck around and pull it out. I know that there’s no real danger of that to take the inner cannula out and, well, I need to get over myself and do it.

I’ll let y’all know if and when I get my big boy panties on and do it.

 

Living With… Stuff: 21 December 23

I maintain that having this damned cancer isn’t my biggest issue: It’s the trach. Last Friday, the doctor took out the #8 trach and replaced it with the smaller #6 but had realized that, duh, the disposable inner cannula hadn’t been ordered as well but easily rectified: The order for the inner cannulas would go in that day and that would get my lady keeping an eye out for the shipment notice or, if she doesn’t see it, she can find out why she’s not seeing it – and kinda like she had to do when the #6 trach was ordered.

Apparently, it says on the cannula that came with the trach to not clean it except, some kind of snafu between the doctor’s office and AdaptHealth, the folks tasked with providing me the stuff I need, well, my lady finally got the script for the cannula put in and they’re being sent out expedited – but I didn’t get the shipping notice until 0001 this morning and the expected delivery date is today.

It’ll be just my luck the package arrives while I’m meeting with the radiation doctor, but I remain grateful that my lady is tenacious enough to have stayed on top of this. In the meantime, I’ve been adjusting to the smaller trach and it hasn’t exactly been “easy” even though I’m not coughing as much as I did with the #8, there’s less secretions but, silly me, I’d forgotten something a little important: We replaced the big #8 with a small #6 and stuck the #6 in the stoma cut for the #8. The #8 was cuffed, which means it had a balloon-like device which worked in conjunction with being on a ventilator; the #6 is uncuffed which makes sense since I’m not on a ventilator.

My nose has been reconnected – I can blow my nose easier – that means without pissing off the trach and getting into a coughing fit. I sneezed the other day and it was a fairly decent sneeze that came out of my nose as well as the trach. Sometimes I’ll cough to get rid of secretion and… kinda gross, but it’s in my mouth but not unlike when you cough up phlegm and you spit it out – which I do – but it didn’t come through the cannula. And because I’m thinking that my stoma hasn’t adjusted to the smaller trach, sometimes I’m coughing up secretions that aren’t making it in the trach at all and coming through the gap between my stoma and the smaller OD (outside diameter) of the #6 trach.

Sleeping has still been one of those trial-and-error things, but my lady and I think we have the optimum setup figured out; indeed, I only woke up once in the night to pee and didn’t stumble out of bed until 0830 which counts as the best night of sleep I’ve had since I’ve been home.

One thing at a time, one day at a time. Still haven’t figured out why my legs and feet are swelling with edema and both feet hurt like a bitch because of it; I’ve contacted my PCP to let him know that Lasix doesn’t seem to be helping all that much and, well, what can we do at this point? I’ll probably hear from his office later in the day and we’ll see what he has in mind. Making this situation a bit iffy is that I’m not scheduled to see him until the end of January and while this edema thing is giving me fits, it’s not one of those “oh shit” situations where I need to see him before my scheduled appointment… unless he does want to see me before then.

We’ll see. For now, it’s getting my head screwed on right to get ready for radiation…

 

Living With… Stuff: 15 December 23

Well, it was bad but not as bad as I thought it would be. He… just had me tilt my head back a little and… snatched the #8 right out of my throat! Talk about ripping the bandage off?! I honestly didn’t feel him put the new #6 in, but I got to see the look on my lady’s face when he snatched the old one out and she says that what she saw… wasn’t pretty – and I had imagined that the empty hole wasn’t nice to look at.

How does it feel? Hard to say at the moment because I’m a little sore but I just finished drinking an Ensure and swallowing feels a little better so far. I can feel it in my throat, and I guess that’s to be expected but I haven’t been coughing and I can expect that any secretions I might cough up are going to be a bit bloody after he ripped off the bandage – and he was all like, “Oops – sorry about that!”

He’s thinking that after radiation, he’ll be able to remove the trach and let the wound heal and reminded us that radiation could necessitate having the trach – but we won’t know until any problems present themselves. But for now, the #8 trach is gone and just knowing that it’s gone makes me feel a little better and my lady did some researching and reads that I should be able to sleep a little better – like not sitting up. I probably still can’t lie flat but, damn, I’d be happy if I could sleep on my side more, but we’ll see how things go when I go to bed tonight.

Time to see about some lunch.

 

Living With… Stuff: 14 December 23

With my meeting with the radiation guy pushed back to the 21st, I’ll be going into the ENT’s office tomorrow morning to have my trach changed out from the #8 that’s been in since 10/27 to a #6 and, welp, I’ve been getting an education in tracheostomy devices, like the difference between a cuffed and uncuffed device, fenestrated devices versus ones that aren’t fenestrated, and reusable inner cannulas versus disposable ones.

I’m going to need Dr. Amin to put in a script for disposable inner cannulas; still not sure if he specifically ordered the device using disposable cannulas but if he didn’t, well, I’ll need a script from him to get them and in the quantity required. And there are two different kinds; fenestrated and non-fenestrated and fenestrated means “windowed.” I suspect that we will need the right cannulas in a hurry, too.

I’m hoping that the smaller trach will give me some relief from all the coughing and secretions as well as making swallowing easier which I also hope will allow me a wider range of things to eat; it’s not that I have a problem eating stuff – it’s swallowing it and I’m not sure if I can describe what it’s like to swallow when you have a trach in your trachea. It’s like having a sore throat with something stuck in your throat when swallowing. I’m also hoping the smaller device will help me to sleep better; it is so hard for me to keep my head in an upright position while trying to sleep in an upright position; if my head tilts down, that puts pressure on the trach and… major coughing fit that may or may not include a little vomit.

The thing that continues to fuck with me is that there doesn’t have to be a lot of pressure; like yesterday, I turned my head to the left, felt the pressure on the trach as my head turned and… coughing fit. Not one of the bad ones but one of the fits that is non-productive or I’m not coughing up anything. I’m not kidding when I say that this trach does not like being messed with and will pitch a bitch at the slightest touch.

We’ll see how things go; right now, I’m still bugging over Dr. Amin’s rather cavalier attitude about replacing the #8 with the #6 and like it’s no big deal. I wasn’t conscious or aware when the #8 was installed but, okay, I guess you can take one out and put another in without being knocked out cold and I admit to having some trepidation over this and I’m just hoping it’s not going to be that big of a deal – but even if it is, it still has to be done.

Just another thing I have to deal with on my quest to become cancer-free. I remain in good spirits, well, when the trach isn’t fucking with me and I’m motivated because there’s a mushroom cheesesteak with bacon and jalapeños I must get and inhale. There’s also a couple of sandwiches from Shake Shack that I plan on destroying – and I want to make some smothered pork chops and/or chicken that I’ve been missing. Because of the chemo, I haven’t been able to kiss my lady and I’m sure that the last time I kissed her was October 26.

I am properly motivated to get through this.

 

Living With… Stuff: 06 December 23

Saw the ENT doc today and one of the things learned is that I have a #8 trach and he wants to put in a #6 – and says that at this point, I don’t need a #8 and I’m thinking this is probably why this thing hurts when I swallow.

An order for the right device was put in and we have to confirm receipt of it so we can call for another appointment… so he can change the #8 out for the #6 and show my lady how to do it – in case of emergency. The secretions are because of the device in my throat and my body reacting to it and the irritation; Dr. Amin says that I can have a dose of Mucinex at night to cut down on the excessive coughing due to the #8 being too big – and he did say that at the time it was installed, going bigger just worked.

On the one hand, I’m not mad about it since I’m here to not be mad about it. He had asked me something and I covered the hole and answered him, and he said that I sounded really good and that a lot of people don’t; my lady told me that some people wind up having their vocal chords damaged and, as such, they don’t sound all that good when trying to speak.

We were both kinda surprised that it can be changed out in their offices; we both thought it would require a trip to the hospital and some surgery, but he says otherwise – just some numbing medicine, probably going to make me cough, and Bob’s your uncle – new device installed. He confirmed for my lady that this thing is only temporary, and it’ll be removed after I make it through the radiation phase of my treatment.

I just hope that the #6 device is going to be comfortable and not of a mind to make me cough up my nuts several times a day and throughout the night – and maybe we both can really get a good night’s sleep.