This didn’t go up yesterday as planned because it’s taking me a bit longer to finish it than I originally thought it would.
So. I had an appointment with my ENT and since the appointment was early in the morning and it takes me about an hour and a half to get the bulk of the mucus out of my face to a point where I get some relief for a bit, I had to take off with tons of crap in my throat. A lot of people don’t get why this is an issue, but think of it this way; ever gargled? That’s how I sound when I first get up and throughout the day when the mucus starts building up again. It’s why I’m constantly clearing my throat. It’s the reason for my chronic cough and why I can’t do something as simple as go to a movie – after all, I don’t want to be that person coughing through a movie and annoying everyone.
Anyhow, last visit we had discussed, briefly, a laryngectomy. At the time, I said no, I didn’t want to do that at this time. I may hate how my voice sounds, and I may not have much of a voice, but I have one. The problem there, as with everything related to this cancer and its treatment (hey, fuck you, cancer) is that it will only continue to get worse, in the same way my teeth continued to devolve to the point where it was time to just have them all removed. And it has: it is noticeably worse to me now than it was a month ago, and much worse than it was six months ago.
As he was checking my mouth just visually by eye, he broke out a dental mirror and looked down the back of my mouth into my throat. “Oh yeah, drowning in mucus.”
Not what you want to hear, even if you know this to be true. He broke out the scope (a rhinolaryngoscope, if you’re inclined to boost your knowledge of medical tools), went in through my right nostril, and had a closer look. During this, if the doctor is trying to gauge vocal cord activity, they’ll have you say “eeeeeee”, breathe deeply, say “hah hah hah”, and possibly swallow, if you’re able. We went through all of this, and he took pictures.
I’ve know I’ve had partial paralysis in my left vocal cord for awhile now, thanks to my previous ENT. We’ve also known that I’ve been suffering from laryngospasms, where the cords won’t release from being contracted when I do something like lift a heavy weight – a bee hive body, for instance – or when doing something like moving the mobile chicken coop, or even bending over. Since most of you reading this will say, big deal, I’ll tell you what it feels like: suffocation. It’s unpleasant, and scary. But, since I knew what was happening, the instapanic I used to feel I replaced with just trying to stay calm, and try to breathe normally until they did release. This is not an easy thing to live with, especially if you have, as I do, many and varied things you do that will cause these spasms to occur.
We’ve also known that the combination of my vocal cord issues and the degradation of my epiglottis were why I repeatedly suffered from aspiration pneumonia for two entire years. That’s why I have a feeding tube and have had zero by mouth for a year now.
Now, back to today. The scope clearly showed mucus hanging around, trying to chat up the ladies, and generally being a punk.
The mucus is the globby lighter colored stuff in the center of the image. There was more of it, but I had managed – through coughing while bent over at the waist to let gravity help – to show the doctor how I usually got some of it out. Obviously, not a really viable method, and just as obviously, although I did manage to get quite a bit out, there was still quite a bit left. This, my doctor said (and I agreed) was not a sustainable method of dealing with this, and there was a very real possibility that it would devolve to the point where this could (and probably would) kill me, either by covering my airway to the point where I did in fact suffocate, or, if I got an infection of some sort, by having infected mucus make its way into my lungs and have a pneumonia party there.
We also found that my vocal cords are now not closing fully and not opening fully – the latter is one of the reasons I feel like I can’t breathe and periodically take giant gulps of air. This is no way to live.
I knew it would eventually come to this point, and we talked again about a complete laryngectomy. That would solve the mucus/breathing problem, and also (maybe) allow me to eat by mouth again, even if only the same liquid/puree/soft food diet I was on before. Even if I did get dentures again, I can’t open my mouth widely enough to get them in right now, and the lack of a ridge on the left lower side makes it difficult to keep them in place to eat. But that’s a different struggle, for a different time.
Since I’d been researching laryngectomies after that last visit, I knew what was involved, I knew how the procedure was generally performed, and I knew the possible outcomes. There is the danger that I will not be able to speak any better than I do now, and that it might even be worse. As I’ve been without a true voice since the original cancer, though, and I barely speak now, I can’t see this as a loss or something I am not already used to. I do plan to record myself saying various things that are important to me. That includes things I say to my dogs, because they are just as important to me as the people in my life.
There is the possibility that I will not, in fact, be able to eat by mouth after healing from the procedure. Again, I say: I am already at this point, and much as I’d like to be able to eat real food again, it is highly likely I will have a feeding tube in place for the rest of my life even if I do manage to eat by mouth, simply to ensure I can get enough calories in to sustain me, given how difficult it is for me to eat.
I’d already made up my mind in the office as we were talking and looking over the scope images, but I knew I had to talk the most important person: mom. Two weeks from yesterday, we will head back to the ENT, to have a talk with him, the plastic surgeon who will want to look me over for the best place to take a flap of skin for resectioning, the speech therapy woman (who was the one who I saw for the original swallow test), and the ENT’s primary nurse. When I talked to my mom after the visit, and told her everything, it was clear to me she also knew that this was indeed the correct path. As she said, we may look at a terrible situation and feel badly/pitiful/pissed off for about a minute, but then we get ourselves together, make the decision, and deal with it head on.
Which is what we will do. The visit on the 19th is essentially a pre-op consultation, and we will make a decision then on when to have the surgery.
The only complication here is that I have someone going on vacation the first week of April, and I have bees coming in March and April. I also really need to go into overdrive on some of the things on my todo list.
And that is where we stand at the moment.
Until next time, peeps: be well.