UP TO DATE

September 26, 2024

It’s been an incredibly hard month. I did not have the energy, physical, mental, or emotional to write an update. My last was on the fifth of this month. Other than recovering from various joint replacements, these past twenty-one days have been the worst I’ve ever felt in my life. I had no desire to write over and over “I feel so miserable”, so I just haven’t updated. But it’s time. Some of this will be downer, but it’s not all that way.

I thought I was handling the 40 MG of the Cabometyx pretty well for the most part. Sure, I had side effects, loss of appetite, fatigue, diarrhea, but I was managing. Then everything went to hell all at once. My feet started hurting again. My mouth was so bad, and it was impossible to eat much of anything. For at least a week, I lived on liquids, cold liquids only. If I ate regular food, there was no taste, and anything hot burned my whole mouth. I’m so grateful to my friend Doug for all the smoothies!

I could actually have either been completely ill from the meds, or perhaps I had some kind of virus. I had a few days where I felt feverish; my throat hurt; I felt faint and dizzy. This also could have been from lack of food I suppose. I never read that a sore throat would be part of the mouth sores, but it very well could have been. It was just a horrendous time.

I was supposed to have my first CT scan since starting chemo on the eighteenth of this month. When Rosie showed up to take me, I was so ill and knew I couldn’t handle a 45-minute drive to the radiology office. My stomach hurt so badly, almost the worst stomach pain I’ve ever had. I felt so much like I was going to faint, that I laid down in my bed to be safe. I was battling nausea and diarrhea, feeling feverish too, breaking out into a cold sweat, after I lay down.

I had a few days last week, where I had that achy, even the skin hurts, feeling you get with a fever. Woke up sweating and chilled. This is what makes me wonder if I had some kind of a virus in the midst of the typical side effects.

I stopped the meds, concerned about the feet and the mouth. I let Dr. Z know the situation, and he agreed about going off the meds until I saw him again, which was today. I also rescheduled the scan for October 10.

I had quite a meltdown a couple days ago. I was listening to my praise and worship playlist, and that day, every song, even the upbeat ones, brought tears to my eyes. Then a song came on, called I AM THE GOD THAT HEALETH THEE. I just started sobbing and sobbing, saying over and over “I don’t want to be sick anymore. I don’t want to be sick anymore.” I called my friend Joylene and just sobbed on the phone to her, asking her several times to continue to pray for me. I guess I needed her calm and gentle love, because I felt so much better after that call. My mood has been positive since that.

Speaking of Joylene, sometime since I last updated, she and her husband came and spent a few days here. I hadn’t seen her in over a year, and it was such a comfort to be with her. She’s coming back, just her, in October, and I can hardly wait. With Doug, Joylene, and my sister Rosie, I’m even more convinced that friends are the greatest blessing we have in this world.

I did see Dr. Z this morning and had my labs done. In my labs, one thing was lower than normal, and one thing was higher. I don’t know what either thing does or means, so not sure how to feel about it. One is probably something to do with kidney function, and having only one kidney does mean my function probably won’t be quite perfect. If Dr. Z is concerned, he’ll get in touch. Have I mentioned that I have come to have an incredible respect for Dr. Z? Yeah, he’s not the hand holding type of doctor, but he makes me feel like he knows his shit. I feel sure of him and trust that I am in good hands with him handling my case.

Here’s the plan. Dr. Z didn’t think I’d had new foot sores, thought it’s still the aftereffects, peeling and such, from the sores when I was on the first high dose of the meds. We have a compromise treatment. I will take the Cabometyx for three weeks, then one week off, then three, then one off. This may change after the CT scan. He said quite firmly today that if the scan shows no improvement, he will take me off this med at once. He said, “Why put you through all this unless it’s actually doing something.” So, two weeks from today I have the scan, and I see the doc again on the 24th of October, two days after my 67th birthday. I’m celebrating this birthday. I have cancer, and I’m alive to celebrate that day! As for the treatment plan, I’m happy with it. It didn’t feel right to take nothing to treat the cancer, at least until we know if it’s doing anything good for me. My sister will be staying with me, to help, make sure I eat and so forth.

Fingers crossed that I have scan results by my birthday!