I am now 19 days Post Op and I am really proud of my recovery so far. I feel confident addressing concerns with my stoma, I am working on ways to communicate with others and overall, I am happy to be cancer free. This past Tuesday, I had a follow up appointment with Dr. Donovan and he was also impressed at my recovery.
This past Tuesday, I met with Dr. Donovan and the Speech Language Pathologists (SLP). Here is what we discussed:
- Dr. Donovan was impressed with my healing. He looked at my stoma and removed some of the sutures (leaving some that weren’t ready to come out). The remaining sutures will come out in a few weeks. I am looking forward to that because mucus builds up around the sutures, makes cleaning difficult.
- It was confirmed per the official pathology report that I will need radiation. There were many things to be thankful for within the report but there was one note regarding positive margins near some soft tissue. In another post, I mentioned radiation is not effective on solid tumor structures but can kill cellular level disease. Dr. Donovan believes my best chance for long term survival and recovery is to get radiation. So, that is what we will do.
- After finishing up with Dr. Donovan, the SLPs worked with me. I was fitted with a Lary tube. Its a plastic tube that fits into the stoma. Here’s a picture of it:
- A humidifier filter (also known as an HME – heat moisture exchange) attaches to the Lary tube. Normally, a person’s nose humidifies air but since I lost function of my nose, the HME serves as “my nose”. The HME looks like a button almost and has a soft sponge like material inside it. My breathing air pushes out on the sides. Here’s a picture of the HME:
- In order to keep the Lary tube in place, there is a soft strap that fits into the side and connects. Normally, people are fitted for the Lary tube while they are in the hospital but due to the necessary reconstruction of my trachea, my doctors and SLPs thought it would be best to wait.
- The Lary tube was quite irritating to my trachea and made me cough alot. I have to say… I do not like it.
- After the discomfort of the Lary tube, I was fitted with an adhesive patch and an HME. This is what I will primarily wear, except during radiation. During radiation, I will have to use the Lary tube. Below is a picture of the adhesive:
- The HME pops into the open space and is interchangeable between the Lary tube and adhesive patch. Overall, I have to say I prefer the adhesive patch and the HME is actually pretty easy to breathe through. I posted a selfie on my Neck Breather Facebook page if you would like to see a picture of me with the adhesive patch and the HME – click HERE.
- We left with a bunch of products and my new “Coming Home” Kit from Atos Medical. It is a pretty awesome bag with a ton of products to try. We will are going to make another post detailing all the goodies! Watch for it!
- The electrolarynx (EL) that I borrowed from the hospital was defective. So I am using text to speech to communicate at the moment. I will get another EL at my next appointment.
- Here is a rough idea of the next few months:
- Feb 8: Next appointment with Dr. Donovan and SLPs
- Feb 12: First official meeting with radiation oncologist, Dr. F
- Mid-Late February: Begin radiation (will last 6-7 weeks)
- After healing from radiation, Dr. Donovan will determine when I can get the TEP (voice prosthesis) placed. This will be another surgery.
- After radiation I will have follow ups every 3 months or so for the next few years.
Over the next few weeks, I plan to do more educational posts about life as a laryngectomy and the obstacles I have encountered, in hopes of helping other Larys and caregivers.
I would like to also take a moment to thank the individuals who have sent us money to help with our medical expenses and supplies. You have alleviated many of our financial concerns and helped both Caitlin and I transition into our new normal with ease. Thank you from the bottom of our hearts!