Tag Archives: laryngectomy

One month out

WARNING: IF YOU’RE SQUEAMISH AT ALL ABOUT MEDICAL STUFF, YOU’LL PROBABLY WANT TO PASS BY THIS ONE.  THERE ARE MANY IMAGES OF THE POST-SURGICAL PROCEDURE KIND IN THIS POST.

It’s been a month since the Big Op (plus five days, but who’s counting?). For those of you perhaps just stumbling across this because you went of googling for oral (or tongue) cancer or lung cancer or dysphagia or laryngectomy: the Big Op was the total laryngectomy. Not that the others were a piece of cake or pie or whatever it is you like to eat. I like to think of it as the bastard child of the two cancers, the surgeries, the radiation, and the chemo. Like a giant hippie commune lovefest gone horribly awry.

In any case, the reason for the laryngectomy, officially, was due to a dysfunctional larynx and unmanageable aspiration. That it, the original radiation effects, plus the ongoing effects – because radiation is the gift that keeps on giving – resulted in my larynx neither opening nor closing properly, which affected speaking but (more significantly) was causing me to aspirate crap into my lungs, which in turn created opportunities for pneumonia to get going. Which it took. Between December 2015 and January 2018 I had pneumonia 13 times, five of which landed me in the hospital for at least a day, and one of those landed me in the hospital for eleven days – and I came out of that one at 92 pounds and with a feeding tube.

I’d had a feeding tube before, way back in the beginning. That one I had for nine months-ish. I’m heading into year three with this one.

Part of the impetus for having the total laryngectomy was that even though I was not eating by mouth any longer, I was (and am) still producing quite a lot of mucus in my facehole. Because it’s thicker than saliva, it is both more annoying and harder to swallow, thanks to the dysphagia. The problem is that when you combine this with a dysfunctional larynx, there’s a pretty good chance of eventually suffocating in your sleep and/or inhaling a plug of mucus and suffocating before help can arrive. Enter the total laryngectomy, which separates the trachea and esophagus, giving you one tube for breathing and another for whatever is going on in your mouth.

Cancer Research UK [CC BY-SA 4.0 (https://creativecommons.org/licenses/by-sa/4.0)]
I put my new ENT off for almost a year on this. Finally, I gave in to what really was inevitable: the problems I was having would only get worse over time, and would likely end up killing me.

On April 26th, I went in for surgery. It took about six hours for the actual surgery: the creation of the permanent stoma, the removal of the larynx and associated structures, the harvesting of a flap of skin from my left thigh to recreate the (now missing) parts. I was in the ICU directly after surgery and for about half a day before they moved me out to the oncology floor (Baptist – Weaver 7 shoutout!). Post surgery, with the stoma, the drains, and the arterial and venous monitor wires on the rebuilt flap (the bulging right above the stoma is the rebuild – swollen and bruised) to make sure the blood supply was ok. Staples along the neck, and stitches in the stoma.

Then, as right now, I have a larytube in the stoma. It’s a fairly short tube, held in place with an oh-so-fashionable collar.

This is how the tube looked the first time they pulled it out to clean it: nasty crap from the stuff that made it down into my trachea while they were working. When I cough, the stuff gets caught in and on the tube. It looks much better these days, with the worst of it when I get up in the morning (and it isn’t bloody and nasty like this, but more clear). I clean several times throughout the day.

That will stay in until things have healed enough that I can move to a base plate – a sticky “plate” with a hole in it that goes over the stoma. With both the larytube and the base plate, there is a button filter called an HME that sits in it. HME stands for heat/moisture exchanger, and is meant to recreate the functions your nose used to perform: filtering and warming/cooling the air you’re taking into your lungs.

HME front

 

HME rear
HME rear

There are some complications that can pop up post-surgery, and I’ve had one, although it has not been the usual type: mine is coughing. Yes, you’re supposed to cough to bring up any crap that’s in the lungs, and I had a fair amount of that early on, which required that I clean the tube anywhere from three to six times a day. Sometimes so much/so forceful it would come through the tube and jam up the HME.

HME clogged

 

But mostly, I have a dry cough. Normally, this would be a shoulder shrug, but what started to happen was a separation of the rebuilt flap from the skin of my neck at the top of the stoma. The pressure from the coughing hammered up against that area and air would just rush right up, further separating the two. This is at the worst. Still fairly swollen, but at least I had my stitches and staples out by this point.

 

Flap separation

 

Not a good thing, all that air – and sometimes painful. The more that opened, the more the top of the larytube wanted to ride up into the trough there – which in turn made the bottom of the tube rub against the front of my trachea where it extended down. Coughing causes it all to move, creating even more annoyances.

Right now, I have a piece of hydrafera (an antibacterial spongy thing) taped across the top of the stoma so the top of the larytube rests against that instead of riding up into the trough. I’m trying to control my coughing – not to allow it to really devolve into a full on fit. Not easy, but it beats having further complications in my neck, which I don’t think can really handle it, given all the things it has had to endure over the past 14 years.

I go back on the 4th of June for another followup, and hopefully by then the top of the stoma will be healed enough that I can go back to the base plate instead of having a tube in my trachea. That would be progress.

Also in progress: I continue to sip water as I can. It is getting easier to do so, and this is slightly promising. The next challenge will be able to figure out how to crank my jaws open again. Now that I am not talking at all, I’m finding that my opening is slowly closing in on itself and my jaws are tighter than ever. It’s a shame there is no real research being done on trismus. I can’t imagine I’m the only one out here with this issue.

Onward we go. Because there is no alternative to not, is there?

How does it go? Down!

Sorry for the lack of updates, my handful of dear but loyal readers. Recovery from this has been…..weird.

But! On with some good news before I get my shit together an do some posts about the recovery. I had a swallow test on Tuesday (yesterday, as I write this). I was quite nervous about it, worried that going on three years of non-use was going to be problematic.

As it turns out, the largest obstacle – or, rather, the biggest missing piece of the entire process – is not having a full tongue (and not being able to move what I have, thanks to the muscle removal that was necessary during the original cancer surgery).

However, by tilting my head back a little and doing a swallow, I can get thin liquids down. Hooray!

It takes 3-4 tries to actually clear my mouth, because of the tongue, but it goes down eventually. Now I can use my Yeti cup again and also just have a regular drink after working outside (or just walking outside, it’s 100F here and will be for the next ten days, according to the forecast).

I did try a slightly thicker swallow during the test, but could not swallow that well at all until a little thin was introduced into it. My esophagus has thinned a little at spots, but that, like the swallowing function itself, should get a bit better with practice. And this practice will be a lot more fun than most of the other things I’ve had to do over these past 14 years.

Until next time, peeps: be well. I’ll try to make the next time a bit of a shorter interval.

Another (bleeping) day

Don’t get the wrong idea: I do like waking up each day, because it sure beats the alternative.

But mornings, for me, are a little hellish, thanks to the ravages of cancer and treatments and surgeries. Right now when I wake up, my neck and shoulders feel really heavy. I also have to site for a moment and do some coughing, to try to bring up whatever has settled/bubbled up in my lungs for however long I’ve slept. After that, my routine goes as follows:

Give the dogs their greenies, then let the big guy out. The puppy (he is not a puppy any more)  stays by my side as I make my way to the bathroom. After taking care of my own business, it’s time to remove the HME (the heat-moisture exchange filter, which  takes the place of your nose, as far as your trachea is concerned, for those functions), and then remove the larytube for cleaning. The HME filter is replaced every 24 hours unless it needs to be replaced before then because it’s jammed up with mucus. After cleaning the larytube, it goes back in, I pop the new HME on, and we’re off to the kitchen.

After a quick brew of coffee and some med smashing (thyroid, gabapentin this round), its off to my desk to settle in and see what’s going on. I pour in the meds and coffee, work a bit – maybe an hour – then head back to the kitchen to make breakfast.

I’ve been trying to incorporate blenderized real meals into my diet, but the volume is problematic. I have to add so much water to whatever it is to puree it, then strain it, that I can’t “eat” as much, or there’s too much particulate to get a fairly high percentage of the actual calories down. For now, the majority of what I eat is coming from powders. I went into the hospital at 127 (pounds) and this morning weighed in at 122 (pounds). So, in addition to the complete meal replacement powder I use, I add some weight gain powder I used to use exclusively when I was working my way back from 92 (pounds). This gives me a ton of carbs and calories, without a lot of volume over what I’m already using. Breakfast also involves more med crushing, mixing, and pushing down the tube: the other half of the gabapentin, and dicyclomine. I also dump in half of a sucralfate, even though technically that should be taken a) alone (it crushes fine, but mixes/dissolves terribly unless something else is also in there), and b) an hour and a half to two hours before a meal (which is nigh on impossible, given how many times I have to eat a day). I’m trying to stay away from the pain and spasm meds and the anti-nausea/emetic drugs. I have children’s ibuprofen and acetaminophen to dump down the tube. Thankfully, no crushing because it’s a liquid. Eat up! Also let the puppy out, because now he’s ready. He can’t just go out with the big guy and do his business in the early morning.

Plow through that, which takes about an hour, then unplug the tube and get everything washed. Do my laps through the kitchen, the dining room, the living room, and do my neck and shoulder exercises while I’m doing those. Strangely enough, it’s my leg that hurts more than my neck. Then again, the last big muscle surgery I had, for the lung cancer back in 2010, when they sliced open my back, hurt like a bitch, too, and took a long time to heal. But on we go.

By now it’s been several hours. Time to clean the larytube. Again.

Next up: water and coffee while working.  Every so often, I get up and do a few laps and shoulder/neck exercises, just to keep the blood flowing and so as not to have any lymphedema develop in my leg,  (or worse, in my neck). When the coffee and water are gone, unplug, wash everything. Again.

If it has not rained, now would be the time I brave the great outdoors to start the first watering zone. Yesterday, we had a massive thunderstorm roll over us, and it dropped just under an inch of rain, so today, we’re good. No watering.

Back to the desk, and work.

Repeat, repeat, repeat, repeat. I usually eat about six times a day. I’m also cleaning the larytube every three hours (or less, if I feel it’s all gunked up).

As you can imagine, this constant hooking up/unhooking/cleaning stuff just dominates my entire day. I’m sure a day will come that I’m not constantly scrubbing the larytube of gunk. At least I hope so.

My folllowups with the plastic surgeon and the ENT are both on the 14th, back to back. I should get my staples out then, and the next step will be a swallow test. I cannot wait to see if I can actually eat. Because if I went through all this and I still cannot eat, I will be incredibly pissed off.

No gunky, nasty pics this time, boys and girls. But for anyone stumbling across this because they are a laryngectomee or will be facing a total laryngectomy and permanent stoma: I’ll post some up later. Just so you know you are not alone, it can look really crappy and dried up and gross, and (I am not a doctor, remember) it will get better. At least to the point where you can go back to your life unless you’re a competitive swimmer or diver or something. That’s probably history. But for normal people, something akin to a normal life will probably work out.

Until next time, peeps: be well.