Learning To Live Life As A Laryngectomee

by GregP_WN

In December, I had what was supposed to be a quick, fairly routine, laryngoscopy with a biopsy of a suspicious lesion looking thing on the side of my throat. In and out, 15 minutes, tops. Over an hour later I was in recovery. When I woke one of the residents came to my bed with a long face to give me some bad news. When the conversation starts with "unfortunately", it's not going to be good. 

Laryngectomy

I was told what my diagnosis was, where it was at, and what had to be removed to fix it. None of that sounded good. I have been a person who has made a living with my voice. It was about to be gone, just like that. 

I really didn't know exactly what to expect from life after other than I wouldn't be able to speak and I would have a hole in my neck. That's the short version of it. I wasn't told about all of the things that you just don't know about, couldn't know about, unless you have lived it. Even the doctors didn't cover some of this stuff. But, to be fair, it would have taken a week for them to cover all of the things that I was about to learn. 

So, it's been 6 weeks since the laryngectomy and bilateral neck dissection surgery. I have recovered exceptionally well since then, my doctors have been surprised by my healing, given the fact that I've had more than my share of radiation on my neck/chest over the course of 32 years in being treated for 3 previous diagnoses having been treated in two of those with radiation. 

I have no explanation for it, neither do the doctors, as for why I have recovered so well from this one. It was even less painful than my previous surgeries that I have had. Eleven years ago, I had a neck dissection on the right side. My recovery from that was the worst, most painful thing that I have ever had to endure. I was fighting that for a month. No amount of pain medicine was enough and wouldn't touch the pain. So I was expecting this one to be worse since my doctor had warned me to expect this one to be much worse than having only a neck dissection on one side. 

It was feared that the reconstruction of my esophagus would not heal because of all of that radiation, and scars from previous surgery. I was warned that if I didn't heal inside my esophagus that more surgery could be required along with extended stay in the hospital. 

So with fingers crossed we went in on January 28th. After 6 days in the ICU, we left for home. Recovery was fairly quick from the start. The feeding tube that I was given during surgery to allow my  reconstructed esophagus to heal was helpful allowing me to get my nutrients and I pushed my meds through it. 

It Hurts

After three weeks I started drinking and eating liquids, soft foods the next week, followed by eating whatever I wanted the next week. Last week I went back to have the feeding tube removed. That's a subject for a whole post itself, if any of you have ever had a feeding tube literally "yanked" out of your belly, you know what I'm talking about. 

I started learning some of the cold hard realities of being a laryngectomee right away. These are some things I learned:

Silence is deafening-I have always been a person who talked a lot, my work, my hobbies, in everything in my life communication was a big part. My Sweetie and I sit and watch TV at night and we used to talk about whatever we were watching. Now, I just sit and stair at the TV, if I want to say something I will try to use my electro larynx, but she has a hard time understanding me. So, I will use a marker board and write it out. I miss those simple little exchanges with my Sweetie.

A dog won't come if you can't call them - Our dogs are used to me yelling at them when it's time to go back inside and they aren't back yet, so I wonder what they think about me not saying anything, no yelling "put that down", "no you can't take that inside", "leave the cat alone stupid"? On another note, they are actually learning hand signals rather well.

Golden Retriever Ignoring Me

I can't blow on hot soup - Even after living with this for 6 weeks or so I still will get a spoonful of soup and try to blow on it. It's a habit that will take a while to break. 

No more whistling - Not that I'm a world class whistling champion, but it's one of the little things that you discover that just doesn't work. 

Drive through windows are not possible now - Even if I was better skilled with the electro larynx the people at the window still can't understand you. So when I really want something, I'll just go inside. That's a whole new thing too. First I'll try the electro, some people can understand me, others just look at me with a blank stair. Then if they can't understand me I'll just write it down and hand it to them. It's frustrating. 

Drive Through Dq

My cell phone no longer needs to be blue toothed to my truck - No need, can't talk, no bother. Most of my friends and family know about my situation and don't call me, but I have a few business acquaintances that don't know and will call. So anymore when my phone rings it's either one of them, or a robo caller. For either, I no longer answer a phone.

I can't check a jug of milk to see if it's still good by smelling it, I tried - So many things that I was used to doing, I've done them all my life, and I still do, it's habit. Some of these are starting to be funny now.

The mucus that I now produce can be used for tractor grease - I don't know what the difference is, but this stuff is thick with a consistency like slime. When I start coughing some of it up, if I don't get it up and it blocks my airway I get out of breath, dizzy, can't walk, and have been to the ER twice because of this.

My nose tricks me into thinking I'm drowning at night - Since my throat was reconstructed I now have a stoma that I breathe through in my neck, and my esophagus was rebuilt so I can swallow again. Something happens every night where my sinuses drain, my nose gets what feels to be stopped up, and I start breathing hard, sometimes gasping for air. The trick here is there's no air going through my nose, I no longer breathe through that, so I'm not short of breath, and I'm not drowning. I've not quite figured out how to solve this fun new issue yet. 

Drowning

Sneezing - this is an interesting one. Out of habit again, I cover my nose and mouth. That doesn't help. I sneeze out of my stoma, which has a filter over it. This filter serves a few purposes, it filters things out of the air that I don't need to suck directly into my lungs. It keeps the humidity up in my lungs where it needs to be. It also keeps moisture in the lungs and trachea so they don't get too dry. So, what happens when I sneeze with an HME (filter) in my stoma? Sometimes, it goes shooting across the room. It just depends on how hard the sneeze is. 

I can't smell hardly anything anymore - since there is no air flowing through my nose I can't smell. I didn't know that's how it worked, that your sense of smell depends on the air flow. But, stop that air from flowing and I smell nothing. Occasionally I will be walking outside and the wind will blow and I can smell whatever is around me that's strong enough to put off an odor. But that's it!

My stoma gets covered and I can't breathe - If the sheets or covers happen to slide up on my neck and cover my stoma, I wake up in a panic from not being able to breathe. The same thing happens if a shirt I'm wearing is a little too tight around the neck. I start struggling to breathe before I realize that my breathing tube is blocked. 

Mr. Nose Can't Smell

These things are all part of the learning process in learning to live life as a laryngectomee. After every cancer diagnosis we all have what is often called our "new normal". Well, none of this stuff seems normal, even compared to what I have had to learn to deal with before. But, it's a process and it will all be OK.

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