WILL IT EVER END?

Day 29:

July 14, 2024

I’ve now been without the Cabometyx for five days. I don’t really feel much difference, still little to no appetite, occasional nausea, mouth still dry and tongue feeling like I burned it eating something too hot. But the worst is the foot sores.

The sores are terrible; the pain is extreme. If they asked me about the pain level, from one to ten, I’d give it an eight for sure, maybe a nine. Except that I remember my recovery from the pain after my last knee revision surgery, and that surely was slightly worse. It’s agony to put my weight on my feet! I’ve been using my old walker, but that doesn’t take all the pressure off the foot. The right foot is the worst, with multiple blister-type sores on the heel. I’m supposed to go get lab work done tomorrow, and I have no idea if I’ll be able to walk for that. If I can get out to Rosie’s car, maybe we can use a wheelchair at the medical facility.

We’ve tried a number of things to ease the pain in my feet. Doug is faithfully and blessedly putting the curel lotion on my feet multiple times a day. He went online and did research about treating these damn sores, and since then we’ve tried an ice pack as well as lotion and then socks on the feet.

I feel kinda discouraged because of the foot sores. I want them to get better NOW!!!! For the past several days, I’ve sat in my big chair with my feet up, or lain in my bed, but rarely done a thing, because it just hurts too much to put my weight on my feet or to walk anywhere. I want it to be over! I want those sores to go away. I’m tired and frustrated and stressed beyond belief. I’ve long sort of joked a bit about how I’ve handled being born and having all my life the juvenile arthritis. I’ve vowed it would never stop me, and I say that I’ll “walk into my grave”, when my time comes. I would never have dreamed that anything could be more painful than JRA in a flare up, but this is. I can work around the arthritis pain, but this is completely different. I who downplays pain regularly, find myself whimpering when I first stand up from any seated position or as I hobble from my bed to the bathroom and then back to bed or to the living room. Several times, the pain has been so intense that I have felt like I might vomit. This is no way to live. How do people do this? Did Dad have foot sores? I remember a lot of his symptoms, but I don’t remember about that one.

I was afraid to take a shower because I have loofa bath mats in my shower, and I knew they would hurt like crazy to step on. But I was desperate for a shower today, as it had been a couple. Doug had the idea to put socks on me and have me go in the shower with them. I had tried stepping in normally, and I’d nearly wept, or thrown up, from the pain when I stepped on that loofa mat. So, I rested a while and then put on socks and tried again. And it worked! It wasn’t pain free, because I was standing on my poor feet, but I was able to shower and wash my hair, and the loofa wasn’t feeling like it is trying to carve into my foot. It’s amazing how things we take for granted can become the sweetest of blessings when we can accomplish them. Taking a shower is normal, not something we think about. But when you can hardly bear to put your weight on your feet, and your shower isn’t one you could use a shower chair or bench in, being able to just get clean was wonderful. I also felt much better about myself.

I’m not sure I mentioned this before, so if this is repeating myself, well, read it again. One day last week, I sent a message to Dr. Z asking if I still need to get the labs done, if there was anything to do about the foot sores, and if I could move my appointment up. He said, yes to the labs, they’ll go away on their own about the sores, and I now have an appointment for this

Wednesday, a video appointment! I guess we will then decide where we go from here in regard to my treatment. I want to start treatment again, but how I dread starting treatment, if that means more misery from the chemo!

On the good side of things, my friend Joylene is coming for a visit! I’m so happy. She and her husband Dan moved to Georgia last summer. We’ve been friends over 30 years now, and I don’t think we’ve lived so far apart from each other since then.

Reminder: If Dr. Z decides to change meds or change doses, ask what I am to do with the highly dangerous Cabometyx I still have.