Jan 282016

Julie 2I had my modified barium swallow test on Monday. It didn’t go well. I choked on the two bites they gave me and that was the end of it. They said my epiglottis isn’t opening, so the food is going right into my wind pipe instead of down into my stomach. It could be temporary or it could be permanent. I choose to believe it’s going to be temporary.

The speech therapist at the hospital recommended I continue to do my swallowing exercises my speech therapist gave me to do and that I buy something called an expiratory muscle strength trainer to strengthen the muscles in my throat. So $58 later, I’m waiting for a delivery. They’ll test me again in four to six weeks.

I called my speech therapist on Monday and told her what happened. She said I needed to call my doctor’s office and ask him to fax her the results so we could continue with therapy. Three days later, I’ve not hear a word from her. I’m working on getting an appointment with the speech therapist in Orlando for February 8 (the same day of my follow-up with my oncologist). The oncologist said the hospital speech therapists have more resources to work with than a home health therapist does and I need all the help I can get. Plus I’m tired of begging this lady to take my money. If she’s not going to bother following up, I have no need for her.

One of our cars has been in the shop and we went to pick it up today. I haven’t driven much lately, but had to drive one of the cars home. On the way home, I flipped on the radio. Unfortunately, my hearing problem, which seems to be limited to certain frequencies, extends to music on the radio. So I turned it up louder.

I was supposed to have an appointment with an ENT to check my hearing on March 1, but I already know he’s on medical leave and is going to reschedule. He didn’t want to do it sooner because the chemo isn’t done doing its damage until at least six to eight weeks after your last treatment. This is week five. I don’t expect to see him until at least mid March.

As I was listening to the radio on my way home, I (of course) had the urge to sing. My voice is still raspy from the radiation therapy, so I knew it wouldn’t be pretty, but I gave it a try anyway. Then I got to thinking that singing is a good way to work your throat muscles… I’ll have to ask the new speech therapist what she thinks about that. I’d hate to do any more damage. But wouldn’t it be awesome if the beautiful gift of music I got from my mother (and my dad) could get me back to where I could eat again? I think at this point, my feeding tube is the root of about 90% of my problems, so having that gone would be a huge relief.

My hair is (very slowly) beginning to grow back. Every day, I take off my hat to see if I can actually see any growing. Not much luck yet. I can only feel it. I have no idea how long it will be before I can take off the hats, but I can’t wait! Sadly, I also had to start shaving again.

I have received many very generous donations to my medical fund and I want to thank everyone again. You have no idea how much you have helped me! If  you’d still like to contribute, please go to https://www.youcaring.com/julie-mears-henry-495041.

 Posted by at 8:41 pm

  4 Responses to “The Road to Recovery”

  1. Julie, it is amazing that you can write objectively about your personal journey. I am sure everyone who reads it is inspired by your courage. Good luck with the new doctors. I hope they have your answers so that you can get back to normal very soon.

  2. I always knew music was good for the soul and heart but to think it can help heal the throat… (if so) Sing away Jules!

  3. I hope and pray things have improved for you. Love, Aunt Betty

  4. I agree with what Gina says and I don’t how you have been doing it but stay strong. Thinking of you as usual.

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