Feb 182017

WaterOn Thursday, I went to the nephrologist for my monthly appointment (one I’d been looking forward to because I had a few questions). The first was about the Samsca. I only had three pills left and he still had me taking one every day. He was going to drop me down to one every other day with the hope we could get approval for more in the next six days.

Evidently, he hasn’t been paying attention because the assistance program I’m on doesn’t work that way. In order for me to get more pills, I have to be in the hospital with a diagnosis of low sodium. Although none of us wants to see my sodium start dropping again, we decided to take the chance now and go ahead and discontinue the Samsca. If I don’t currently have any cancer, my sodium should stay steady. As of now, I’m at 136. Prayers and good thoughts are greatly appreciated!

The next question was about when I might be able to start drinking some water. I’ve been on nothing but Gatorade for months and am thirsty all the time. I also feel seriously dehydrated.

The doctor’s answer annoyed me. He said, “Why do you need water?” I restrained myself from rolling my eyes (I hope). Doesn’t everybody need water?

Assuming the water bottle I had stashed in the car was going back in my refrigerator that day, I continued to question the doctor about when I might finally be able to have some water. He kept asking why I needed it and telling me there was no reason I couldn’t live on Gatorade and soda (except I’m sick of Gatorade and I don’t want soda!). After awhile, I started to get what he was trying to tell me. So I finally asked if I might have to go the rest of my life without water.

His answer was, “Maybe.” I can’t even imagine never having water again, so for now I’m trying not to.

For the last several days, I haven’t been feeling well. I’ve had a fever off and on (up to 101.7) and have had some flu-like symptoms. At one point, I was even somewhat delirious. I mentioned all this to the nephrologist and also contacted the oncologist. They ran some blood tests, which all came out fine, and gave me a prescription for an antibiotic. I’m feeling somewhat better now, but am still spending a lot of time on the couch or in bed.

On Monday, I’m scheduled for my fifth Keytruda treatment. I’m anxious to get it done because the oncologist said it could take six treatments for it to start working. So let’s get it going, right? Despite what he said about the six treatments, we’re going to do some sort of scan (probably a CT) after this fifth treatment to see if there’s any visible cancer. I’ll post again when I know more.

That’s it for now. Thanks for sharing this experience with me.

 Posted by at 9:02 pm

  7 Responses to “Who needs water?”

  1. Well it does sound like you are doing better. I hope that stays that way. Prayer for you ever day.

  2. Keep fighting! Sometimes it feels like you’re on an island, especially when the doctors aren’t so agreeable. You are in my prayers daily!

  3. My mom wanted me to tell you hello, 🙂 and that she is praying for you. And so am I.

  4. I didn’t realize you couldn’t have water. That must be very hard for you. Hang in there and stay in touch. Love, Aunt Betty

  5. I am sorry you still cannot have water, and nervous about the sodium levels dropping gain. Will say prayers and as always my deep healing breathes are for you.
    It was great spending time with you and hope that we did not bring some kind of bug with us when we came down to visit. I had blast seeing you but the best part was seeing you doing so well.

  6. I’m with Gina. Sorry you can’t have water! Can’t imagine not drinking it. Sorry you are still going through all of this. Thinking of you and praying for you. Glad you and Gina got to spend time together. Big hugs Renee

  7. Julie, you are The Man!…drinking only Gatorade! I think you should invent a chocolate mocha-sea salt Gatorade chewy that could be chewed and swallowed, then followed by a glass of water❗️I’m still in my leg brace, but wearing it is a piece of cake compared to drinking Gatorade. I’m praying you get your Keytruda on schedule and that your CT will be good!

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