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.
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.
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.
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.
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?