After Surgery

I am a Neck Breather

It has been quite the journey, and its far from over. But we have hit our largest milestone to date. I am now a neck breather.

I will have to say it’s not as bad as I thought. Breathing out of my neck is much more natural than I thought. Honestly, my brain just thinks I am breathing out of my nose. But my nose does feel like it is constantly stuffed, as there is no longer any air going through it. I did not take long for me to get adjusted having the stoma. I do not even noticed that it is there anymore. Breathing out of my neck does have some advantages. For example, I can now have longer make out sessions with my wife! I still have a long way to go. I am still not able to speak, eat normal foods, swallow like I did before, or even smell. But I am alive, and grateful more than ever…

In one of my earlier posts, it was expected that I was going to have a primary TEP puncture at the time of surgery. This would have allowed me to speak more quickly after surgery. Unfortunately, due to the tumor location and the doctor having to do more reconstruction than expected, it was not placed at time of surgery. It will be placed at a later time. I do miss talking. I miss that I can not easily express myself. However, my wife and I joke at how good we are going to be at charades. I am constantly miming her things. Lets just say we both have a long way to go. I have been using a text to speech application on my computer which has given me a much quicker way to communicate than the Boogie Board Jot as I am a quick typist. I highly recommend grabbing one for those that have to get a laryngectomy. My hospital did not supply anything during my stay.

It is more maintenance than I realized.  Right now I only have a foam cover over my stoma. I will be fit with a lary tube and HME next week, but right now I have really enjoyed not having anything there. I had trach tube which was hard and it got clogged constantly. There was one time, it was so bad that I could barely breathe. I remember the respiratory therapist having to suction it out. I also have to clean my stoma twice a day. Its pretty basic, I was instructed to clean around the stoma with some hydrogen peroxide. The one annoying thing is that the mucus likes to attach to the sutures which makes it very difficult to get the mucus out.  I also have to put saline down my stoma, using a saline bullet, which I am still getting used to. Cool things: I can find them on online, they are called Modudose Saline Solution for Inhalation. It feels like I am giving my self a shot in the sense that I am waiting for what is about to happen next. While it is not painful, it does make me have a coughing fit, which is exactly what is is for. The intent is to make me cough to help thin out the mucus that is in my airway.

I know that is going to take some time, to get adjusted to the new normal. But I have to say that I am very happy with the decision I have made. It will allow me to have a better shot at being cancer free and give me the 50 years with my wife that I promised. I am taking it one day at a time. I am ready to take on whatever is next.

 

A little bit about me: A neck breather. I grew up in Spring, Texas and graduate from Texas Tech University in German and Management Information Systems. I married the love of my life Caitlin after meeting her in Lubbock, Texas. We shortly moved to Houston, Texas where we currently live. On October 26th, 2017 I was diagnosed with a rare form of cancer called Adenoid Cystic Carcinoma. In the coming months I will have to get a laryngectomy to remove by voice box. I started this blog with the encouragement of my wife to inform my family and friends of my progress, and to share my journey as I become a laryngectomee.

9 comments on “I am a Neck Breather

  1. You are a fighter, Jeremy! Love you so much! 💕

  2. You have the right positive attitude Jeremy. I am 17 months into my neck breathing life and being positive from the start has helped me continue to enjoy life to the full. Like you my TEP puncture was made after the surgery, with a local anaesthetic, and it was great to talk again. I do not have any tubes in the airways just the Stoma opening. With our climate in England changing the HME devices and cleaning is a lot more frequent than I guess you will need in Texas.
    I will be glad to pass on and receive any tips to make things easier. ( I too used the Boogie board and text to speech app)

  3. You are inspiring!

  4. Thanks for the update Jeremy. Sounds like you and Catlyn are adjusting to the “new normal” with Grace and fun. You are heros to us all!
    Barry and Stacie Nobles

  5. RayGina Machuca

    Love your spirit Jeremy!!!!!!

  6. Sandy Hazelmyer

    Thanks for continuing to share your story. We are so happy everything is going so good. We know your mother-in-law is one of the best helpers/caregivers you can have.

  7. Rosie & Louie Tunney

    We are so glad you are coming along but know that you have a long way to go yet. Still in our daily prayers and know God is right by you and Catlin all the time helping you both on your way to a happy and wonderful life. Glad you are home now that is always the best part of getting better. Glad that you and Catlin still have a your sense of humor. That is always a great thing to have in a marriage and but when something like this happens it is needed more then anything. Keep up the good work, keep smiling and be happy and take one day at a time. You are HEROS to us. Love to you both.

  8. Cindy Anderson

    I am reading your posts daily and so happy that you are home now. That text to speech option on the computer sounds like a much better way to communicate! My prayers are with you and find your love for each other and positive attitude so inspiring! Hello to MaryJo! Hugs and prayers, Cindy

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