Nov 122016

julie4Since taking a break didn’t seem to be in the cards, I decided to go with the flow, the first order of business being to get my esophagus reopened so I could eat again. So I called the ENT’s office for an appointment. The first he had available even for just an office visit was the week of Thanksgiving. Great. I had hoped to be eating by then.

My phone rang later that evening and I almost didn’t pick it up because I didn’t recognize the number. But something made me answer it anyway. Oddly, it was the ENT. He was calling to talk to me about the barium swallow I had requested. I told him I had changed my mind and instead wanted to do the dilation. He said he had a cancellation on Friday if I could come see him at his office the next day. Of course I agreed.

The dilation went well but every time I ate something it felt like somebody was hitting the back of my throat with a blow torch. The pain has since improved some, but I still have to chase every bite with water. Even so, now that I’m eating, I want to eat everything in sight. I don’t think I’ll have much trouble gaining back some of the weight I’ve lost, especially if I don’t lay off the ice cream. I have another dilation scheduled for early December and a third for early January.

My Orlando oncologist called last week and said she still doesn’t know when her clinical trial is going to start, but she doesn’t think I should wait for it. So she called my oncologist here, and they want me to go ahead and start the keytruda. My insurance company has already approved it, so I’m good to go. I have to go for some sort of orientation on Tuesday, then they start giving me the drug on Thursday. After that, I’ll go every three weeks for an infusion.

In the meantime, my sodium continues to drop. I had to take two Samsca pills this week at $100 a pop. I’m down to six pills, but if the keytruda works, the sodium should stabilize. In the meantime, one of my sisters found a co-pay assistance program that says it will pay all but $10 of my prescription up to $2,000 (thank God for sisters). I meet their eligibility requirements, but it still sounds too good to be true. We’re going to go meet with the nephrologist’s business manager next week and get the paperwork sent in. Fingers crossed.

I’ve been slowly regaining my strength back from all those hospital stays. Each morning I come outside and walk laps around my pool. One of my sisters was here last week from Kansas City and we were able to go downtown and to a place called Cocoa Village and go shopping in the boutiques (I found the cutest dress in one of the shops in downtown Melbourne). We also went down by the beach for awhile.

Now that my sister’s gone home, I’m trying to get back to some type of normalcy. The weather has been beautiful here, so today we went to lunch at a place with an outdoor patio. I’m hoping to plan some dinners out with friends. We also have Thanksgiving reservations at a beachfront restaurant with my Dad and sister, are hosting Christmas, and are meeting friends at a beach house in New Smyrna Beach for New Years Eve. I’m looking forward to doing things like shopping for Stocking stuffers, decorating my tree, and making fudge.

That’s it for now. Thanks for reading my blog. If  you’d like to help me with my battle with cancer, please go to

 Posted by at 10:36 pm

  8 Responses to “Some quality time”

  1. Your plans sound wonderful. It is heartwarming to read the things you are doing and enjoying. Happy Thanksgiving! Sharon and Gary

  2. Thank goodness you finally got some food and drink. I honestly have been thinking about how much I so love food, all kinds of food. I think just thinking about foods made me hungrier.
    Glad things are getting back to some kind of living life for you.

  3. It sounds as though thingg are going better. I’ll keep my fingers crossed, and I’ll definitely keep praying. Love, Aunt Betty

  4. I agree with what Gina said and your aunt Betty. Glad you are getting back to some normalcy and have some plans made. Thinking of you always. Love Renee

  5. Wonderful news, Julie! You deserve it! ❤️ Happy Thanksgiving!

  6. This makes my day. Haven’t been able to look for a while, but glad I did. You are inspiring! I’m extremely thankful to have you as a mom. I remember as a kid, trying my hardest to keep you and dad together. I really liked you, and love you now. Take the trips, buy the shoes, eat the cake.Life is too short! 🙂

  7. It’s so nice to read this when your not clueless, and miserable.

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