Jun 182017

A few weeks ago, I noticed my cheeks were getting a little red. I thought it might be a combination of the sun and the chemo. So I became extra vigilant about applying sunscreen before I went out.

About a week ago, the redness began to look like more of a rash. So I asked my oncologist about it. He said, “Oh, that’s the drug.” He was talking about the Keytruda. I said, “Well, what can I do about it?” He said, “Not much. I can’t tell you if it will go away or not. But people who get the rash tend to have better outcomes.”

I had no intention of just living like that, so I Googled “Keytruda rash” to see what I could come up with. The doctor was right about the rash in that it’s a common side effect of Keytruda, and there’s a correlation between the rash and better outcomes. But I also found out the rash is usually treated with a topical steroid. So I put some cortisone cream on it, and it was better the next day. It’s still there, but it’s faded enough I can hide it (most days) with makeup. Problem solved (sort of).

In other news, I saw the nephrologist a few weeks ago. My sodium had been holding steady and I’d only been taking the Samsca once a week. So he told me I could stop the Samsca again, and switch out some Gatorade for a bottle of water (yes!). The first week, my sodium dropped from 137 to 134. Not ideal, but not bad for an entire week.

The second week, it was down to 131. The fact that it’s dropping and I’m still mostly drinking Gatorade means there’s probably some residual cancer still in my body somewhere. I’m trying not to worry too much about that right now.

I thought the doctor was going to tell me to get back on the Samsca, but he said to stay off it and continue the blood draws. I’m a little nervous about what my number will be next week. I have my blood drawn on Wednesday.

While we’re on the subject of blood draws, I recently started getting multiple bills from the hospital for $28.50 each. When I looked closely, I saw they were for my weekly blood draws. They’re charging $525 each time they draw my blood. Talk about seeing red! The home health agency was charging less than half that, and they were coming out to my house. So I called the nephrologist to see if there’s any way he can get me back on home health. I’m waiting to hear back.

I’m still really struggling with some serious fatigue. It’s not quite so bad that I can’t get off the couch anymore, but it still makes everything seem so much harder. I talked to all of my doctors about it, and none of them have an answer. My thyroid is fine. It’s not the Keytruda (whew!).  Well then what?

Since I’ve been off the narcotics for over a month now, I didn’t think that was the problem, but it was the only thing left. So I Googled “opioid withdrawal and fatigue.” And I found a forum for addicts. They were talking about how the fatigue associated with opioid withdrawal could be almost debilitating, and how it could last anywhere from 2-6 months. Ugh! I don’t think they could have done a better job of describing my symptoms, so I have to assume that’s the problem. But at least that means it should go away eventually.

Lately, I’ve felt like my hearing loss has been interfering with my everyday life, so I went back to the ENT. I was hoping he could find me a low-cost option for correcting my hearing to the point that I could hear music again and stop asking people to repeat themselves.

The results were mixed. My hearing has actually improved for lower pitches, so men’s voices are easier for me to hear than women’s. But it’s stayed the same for higher pitches. This is what prevents me from hearing most music well. And it also makes it harder for me to hear conversations in social situations where there’s background noise. The only way to fix it is with about $4,000 worth of hearing aids, which isn’t really in the budget right now. I’ll revisit that down the road.

This week, I celebrated my birthday. Not surprisingly, I received several notes and cards from people who were sure I must be really happy this year because things seem to be going so well overall. But I didn’t feel that way. Instead, I felt an almost overwhelming sadness. I had no idea where it was coming from. It was just there.

I think part of it was the gloomy weather. We don’t have that many dreary days in Florida, but we’ve had a stretch of them this June.

And maybe part of it is not knowing if I’ll live to see another birthday. I know technically, none of us can say for sure if we’ll live for even another day. But when you have a terminal illness, you know things can turn on a dime. When I celebrated my 50th birthday, just a few weeks before I got sick for the first time, I figured barring any accidents I had at least another 30 years left. Now I go year to year. I’ve lost my sense of security.

Then there’s the fear. On August 3 of 2015, I was diagnosed with cancer. Exactly a year later (when things were going really well), I was told the cancer had spread to my liver. It’s almost summer again. What will happen when August 3 rolls around this year? I’m not afraid of dying anymore. But I do fear the cancer. And the pain that goes with it.

And lastly, there’s the fatigue. It just makes everything seem so much bigger than it is.

None of this means I’m not grateful to be here. And I’m so thankful for everyone who wished me a happy birthday. If I’m still here this time next year, maybe I’ll see things differently.

 Posted by at 3:49 am

  4 Responses to “Seeing red”

  1. Jewels,
    I am glad and sad for you, I am sorry that you ever had to deal with any of this and all of this. It seems it never really ends but just has different never ending chapters always filled with challenges. Can be very trying, tiring and frustrating. I get that not to the extreme you have had to deal with but yep there are no words intense enough to project that emotion.

    The one thing I am glad for that most will not understand is life is short and fleeting. We never know what tomorrow will bring us or even if we get a tomorrow, none of these things are guaranteed to us. What I am glad about is you now have some strength to see this country. To take the back road to some place new and to enjoy a bit of the ” I have not been there but I am going to find out what is there”. Enjoy your up coming trip, breath, explore, live!

    • Thanks. Even though I can’t escape the damage that’s been done, it’ll be so nice to get away from the endless appointments. Sadly, I know you can relate to that. I wish you and Bill could come with us!

  2. Your gratitude was the best part of your post.
    You are very special person.


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