We met with the my speech and language pathologist (SLP) and doctor today for my one month follow up. As my doctor so well put it, it feels like the operation was light years away in some ways and just yesterday, in others.
The appointment, as always, went great! The appointment started off with us talking to my SLP about questions we had. The main thing that I have struggled with is the lary tube! The tube is uncomfortable and I was told I needed to wear it throughout radiation, which caused me some anxiety. Not only could I be uncomfortable from the radiation, but I’d have him stupid tube rubbing on my trachea and making me cough. So, I asked if it was possible to not use the lary tube. To my surprise, Dr. Donovan said we can try and see how it goes. Then he explained the following:
- In general, laryngectomee’s who have radiation first THEN have the surgery struggle to keep their stoma patent (or open) because the tissue is more damaged. Usually this situation is seen in more aggressive forms of cancer like Squamous Cell Carcinoma. BUT due to my form of cancer, Adenioid Cystic Carcinoma (ACC), I had surgery first and radiation second. What this means is that my skin has had less damage therefore, my stoma is less likely to close. So, I will start radiation without the lary tube and my doctors will monitor things as we proceed.
- I knew my case was unique, because most laryngectomees are older (average age around 60) males who smoke(d). I think my age and relative health are going to help me manage radiation side effects better (or lets pray…. NO side effects.) As Dr. Donovan put it a while back it is not possible to predict how things will go for me as I am a statistical outlier due to the rarity of my cancer and its location. So, only time will tell but I am trying to remain positive.
- We asked about other options instead of using a lary tube. One option is the use of a lary button. The SLP said it will be an option later but typical the skin around the stoma need to heal more before I can start using a lary button.
We also talked with the SLP about esophageal speech and the TEP. I would really like to be able to learn esophageal speech. I have always had a passion for learning languages and this to me feels like a new language. I have started to try and teach myself but its a slow process. Dr. Donovan said that on average only about 30% of laryngectomee’s can master esophageal speech. Both the SLP and the doctor commended my effort to want to learn. I have read some “horror” stories about TEP but that is not what is deterring me from it. I like to think of myself as low maintenance and there is some added maintenance associated with a TEP that I would like to avoid if possible. I have heard many videos with people, including the one below, using each methods and both are great! You can hardly even tell!
I finally was able to remove the remaining sutures! This is going to me a huge help while I am cleaning and maintaining my stoma. Mucus likes to build up around the stoma and with the sutures removed this will help make that process easier. It was not as bad as I thought to get the remaining sutures removed. The doctor indicated that the area around the stoma often remains numb so the pain was relatively low. My chin and neck are still numb due to the surgery, but they will come back in time. It sure makes shaving my neck difficult as I cannot feel the razor touch my neck! I just have to be a little more careful but its manageable.
I received my broken electro-larynx (EL) back. Unfortunately they did not have any other ones to loan out so I am having to make due with this one. There are a few settings on it that are not working right, so since my operation I have not been able to master it. I am only able to use it using the oral adapter. This make it hard to use because you have to use what looks like a straw that goes in your mouth and connects to the EL. (See picture) Speaking with essentially a straw in your mouth makes it difficult to form words. I am hoping to have one that works correctly by my next appointment.
In regards to radiation: We have an appointment on Monday. We do not know much about timeline yet but once we get that info, we will post.
There are plenty of good doctors out there, and unfortunately some bad ones. Good ones are not always easy to find, but I cannot stress enough how blessed we are to have found a great doctor! Living with Crohn’s Disease my whole life, I have met a range of good, bad, and even great doctors. And two of the past great ones, even made it to the hospital to see me. We felt it was necessary to let Dr. Donovan know how much we appreciated him, so my wife and I wrote a small note and gave it to him at our last appointment. If you are lucky and as blessed as we have been, I encourage you to write a little note to your doctor on how they have impacted your life. It could make their day, month or even year.