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 24^th of October, two days after my 67^th 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!

STRUGGLING

Day 31 of second treatment plan

September 5, 2024

I Know I haven’t written for a while. It felt like I was just saying the same old things over and over. Who wants to read that? And when I get down about things, I tend to keep that inside. Years ago, my dad’s third wife, told me “Sherry, we like you when you’re happy. We don’t like you when you’re not.” Well that taught me good. I always tended this way. I can remember instances in my past, things in childhood that went way wrong, and I didn’t always tell people how I felt if it was bad feelings. My tendency was to try to take care of the people around me. Third Wife’s comment just solidified that and became etched in my personality. So, I just didn’t want to talk about being down and worried, or that I just rarely feel good anymore.

What’s going on with me? little bits of just about every side effect I could have. I had the diarrhea off and on for days. Slight nausea but still no vomiting. My last lab work, showed I had a serious UTI with dangerous bacteria. The antibiotics for that one near made me lose my mind because the pills are hard to swallow even when broken in two, and they gave me terrible stomach aches. Loss of appetite is constant sometimes several days in a row, and when I was having the stomach pain from the antibiotics, I wanted never to eat again.

I started thinking I might be developing hand and foot syndrome again. it started because skin that had died from the original sores peeled off. The new skin was tender and painful at first. Even Dr. Z said he thought my pain was just from that new skin. But the pain got worse for a few days, and I was worried. Discouraged too. I thought if he made me give up the chemo pills, I’d finally have the meltdown I haven’t had yet. Thinking Dr. Z would tell me to drop the meds, I didn’t take them two days in a row this week. But my feet got better so fast, and it wasn’t like before when it took days to improve. I decided maybe the doctor and friends who’d looked at the sores and thought there were no sores just might be right. I started the meds again. Now it’s just wait and see on the hand and foot thing.

The overall worst side effect is the fatigue. And it doesn’t help that when I lie down and try to sleep, I can’t fall asleep. I might have a light doze for 15 minutes, but I can’t remember the last time I actually slept through the night or was able to sleep a few hours during the day. I feel wiped out. Or as a character in one of my favorite books said, “I feel dead and dug up.”. I’m too tired to come up with things to fill my hours during the day. I can’t work on my novel with this level of exhaustion. I don’t want to listen to music because I can’t sing. My voice is trashed and even talking frustrates me because of how my voice is being affected with the chemo. I read fan fiction or old romance novels, mind candy to help the hours pass. At night I toss and turn and do it all over again. I even wrote a poem about it today, and I only write poetry when I am emotionally undone over something.

And yes, I’m feeling sorry for myself. So sue me. There are days I feel like I can’t go on, or don’t want to go on because I don’t have the energy. People tell me I’m strong, but there are days when I don’t want to be strong and I want people to be strong for me. I worry all the time, hard as I try to stay in hope for my future.

Occasionally, I work on funeral plans, just in case. I know what music I want to be played. I haven’t made a lot of plans, but I do think about it from time to time and have even discussed some of it with Rosie. It’s probably a maudlin mind space to fall into, but being exhausted makes it hard to feel positive. And I suppose all this is actually normal, but it’s truly hard to cope with it. I’ve never felt so negative, and I’ve been through a lot of hard things.

To add to this, I’m having a terrible flare up of my arthritis. Every joint I still have hurts, from my jaw, to my fingers, to my elbows and shoulders. I can’t take anything for it, other than Tylenol, and Tylenol does absolutely nothing for auto immune disease types of arthritis.

In other news, I have my first scan on the 18^th of this month, see Dr. Z on the 26^th. Maybe we’ll have good news and that will pop me right out of my funk. Dr. Z said, “we need to find out if this stuff is actually doing something.” I happened to like that comment very much.

Speaking of Dr. z, I had my usual five-minute appointment with him, but it was so different. He seemed happy, happy that the lower dose Cabometyx was doing so well for me. When he was ready to leave, he shook my hand, something he’s never done before. And then the big shock was that he acknowledged Shani. He’s never commented about her, quietly lying at my feet during all the appointments. He’s never indicated he knows she is there at all. But this time, he did acknowledge her existence and even petted her with my permission. He even told us about his 15-pound dog at home!