Monthly Archives: August 2024

Side effects and More

21 Wednesday Aug 2024

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SIDE EFFECTS AND THEN SOME

Day 15

August 21, 2024

So, side effects have come to visit. I’ll start by saying no Hand and foot syndrome yet. Thank God. I do have nausea, general stomach pain, diarrhea, immense fatigue, and loss of appetite. These effects started happening last Wednesday, when I was nauseated on the drives to and from my uncle’s funeral, and they aren’t showing any signs of going away. The diarrhea has just been small amounts at a time, but it’s been all day and all night for the past two days. I might possibly be a little better today, but it’s too soon to tell.

The fatigue, I called it immense, because it seems even worse than what I had before. Yesterday, for instance, I went back to bed around 9 AM and slept until around 2 PM or so. I stayed up late watching the Democratic convention, but it was a struggle. I felt exhausted and ready for bed by 6 PM. It’s just after 9 now, and I feel ready to go to sleep, but I’m not giving in right now.

The loss of appetite is about the same as the first round of chemo with the higher dose of the meds. Even when I do eat, I eat tiny amounts of food. Maybe I will have a smoothie and drink an ensure. I can’t eat a full meal these days. I’ve now lost just over 15 pounds since this all started. I was overweight, so people don’t notice the loss, or nobody is saying they notice it. It’s got to be the appetite thing, because otherwise, why would a woman who isn’t exercising be losing so much weight in just two months. I’m still at the stage where I’m glad of the weight loss, even though I probably shouldn’t be glad. It doesn’t mean I’m healthy or anything cool like that. I feel like I’m not going to worry about it until none of my clothes fit or people start commenting about me losing weight.

I had a wonderful surprise this past Monday. A dear old friend I haven’t seen in at least 15 years and to whom I haven’t spoken in 3 and a half years, called me yesterday. We talked for a long time, catching up. It was great to hear from him and I’m hoping he may come for a visit someday. I’d let him know I was back in California, but somehow, he didn’t remember that and still thought I was in Colorado. Typical in many ways. It was a happy break during this time.

A week from tomorrow I go back to see Dr. Z. I have to get lab work done before that of course. I can’t remember if I explained why the lab work earlier in this journey, so I’ll mention it here. The big thing is to check my white and red blood cell counts. Chemo that destroys bad cells also destroys good cells, and my blood cell counts can change a little or drastically. They also check for a lot of other things, and in particular, they check for my kidney function. This is vital since I only have the one kidney now. I’m hoping we can get a CT scan sometime in September, so we can find out if the chemo is having an effect on the cancer at all. Still, I take my little pill every day, and I hope.

I’ve said before that this is a one day at a time kind of thing. It’s also a bit of a roller coaster, with my mood creeping up those steep hills, say after an unexpected phone call, and then the mood plunging back down to the bottom as the side effects take hold and don’t seem to want to let go. Today, I just feel tired, so tired. I’m hoping I can make it through tonight’s Convention speeches. Tonight is Secretary Pete and governor Walz, and I’m excited to hear them both. Right this minute however, I feel like I’d just like to go to bed and sleep for a very long time.

DID I SPEAK TOO SOON?

15 Thursday Aug 2024

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DID I SPEAK TOO SOON?

Treatment day 9:

August 15, 2024

Remember my last post when I said I wasn’t having many side effects? Yeah, well, that seems to have changed a little bit. No hand and foot syndrome, thank God. But my tongue has a mild version of feeling like I ate or drank something too hot and burned it, and my lips are dry and cracked all the time, even with chap stick or Vaseline on them. I’ve had bouts of nausea several times, still no vomiting but nausea. I had one day with some diarrhea, but that seems to have gone away. Yesterday I was out with my sister most of the day. We went to a family function, with an hour and a half drive to and from the event. I felt sick in the car both ways, and I’ve never been car sick in my life! We actually stopped on the way home to get water, so I could take one of my nausea pills. So, my friend the side effects are back!

The fatigue hasn’t really come back, but I’ve had the opposite problem. I am not sleeping well. I’ve been falling asleep and then waking up anywhere from midnight to 4 AM and staying awake until it’s time to get up. I’ve also had times where I can’t fall asleep for hours, but mostly it’s the other way. Last night I was exhausted after my long day. I went to bed around 9:30 in the evening, slept deeply and well until about 1 AM, and I’ve been awake ever since. This has got to stop. I’m frustrated.

My appetite is still relatively okay. Not perfect. I was just getting it back when the new meds arrived, so now it’s sometimes not there and sometimes is. When I do eat, it’s not a lot at a time, but it’s at least getting something down me. A smoothie, a casserole of some sort without tomatoes or anything spicy or acidy. One night I had mac and cheese, and another night pre-made mashed potatoes from the grocery store. I even got sweet and sour chicken the other day and found it delicious, having left overs of that today. And I ate Salmon at the family thing yesterday. I’m working on that nutrition thing!

I went to my uncle’s funeral and celebration of life yesterday and had a marvelous time. I can hardly talk today, but the event was a blast. The service was beautiful, the most beautiful funeral service I’ve ever attended. We went to another venue for the life celebration, where I saw many family members, I hadn’t seen in far too many years. The food was incredibly good, and I’ve always disliked Salmon. But if I could make salmon that tasted like that, absolutely not fishy, I’d eat salmon several times a week! After dinner they passed around microphones so people could tell stories about my uncle. They were moving, funny, and reaffirmed all that we knew him to be.

But I nearly reached my brick wall. It was hot yesterday; I wasn’t feeling well; I’d been up and bubbly and cheerful, sitting on uncomfortable chairs that were too high for my feet to touch the ground. I just reached the moment when Rosie knew by looking at me that it was time to leave. But we’d been there about three hours, so we said farewell to those we could find and headed for home, almost two hours away. I’m very happy I went, and I truly hope to continue to rebuild relationships with the people I saw at the event.

I planned the day out well though, cancer and treatment wise. I brought my biggest purse. Inside, with my phone, disabled parking pass and other purse type stuff, I had one zip lock bag with my dog Shani’s food and a collapsible bowl for her dinner and water. I had a tiny purse in the big one too, with all my necessities. I packed a number of disinfectant wipes in a sealed double bag. I brought my nausea pills and the diarrhea medicine, all of this just in case. Life is complicated these days, and these are things I have to consider before going out.

Treatment Begins Again

11 Sunday Aug 2024

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Treatment begins again

Day 1 of treatment plan number two:

August 7, 2024

I got the new meds yesterday and took my first one this morning. To start with positive things, the special compounding pharmacy has it in my record that I need braille labels, so when my meds arrived yesterday, the labels were already on the packaging. It was cool to be able to verify for myself that I had the right meds and the right dose, 40 MG. I’m probably going to get a kick out of reading the label every time I get a new bottle. It’s such an unusual thing in my life.

I felt scared about starting treatment again. I was nervous the first time around, because I didn’t know what to expect. Now I do know what can happen, and that is far more frightening. I’ve already started trying to do self-care things, hoping to prevent some of the problems from last time. The lotion on the hands and feet is back. I’m using the mouth rinse my friend Denise sent me. I rinsed my mouth after taking the pill this morning. I mean, it’s radio active, I should rinse that out of my mouth.

Bad timing on a book I chose to read. Last week I read a book about the Challenger space shuttle by Adam Higginbotham. The book was so good I immediately got his other book about Chernobyl. I don’t really know much about that incident, except that it happened. I thought I’d learn things by reading this one, and I sure did. Some of the technical info about nuclear power plants was boring, but the descriptions of the human tragedy, the radiation poisoning really got to me. I hurt for the people and sympathized. My tiny experience with radiation though my chemo pills is nothing compared to what they went through, of course, but it still hit home. I’m willingly, purposefully ingesting a tiny fraction of what they experienced, and parts of what happened to me were terrible. I’m thinking I may not finish that book!

I’m not likely to experience much in the way of side effects today, I suppose. If I do I’ll be back to talk about it.

Day 2:

August 8, 2024

No side effects so far, except fatigue. I slept well last night. I had been out of my Trazodone and just got it refilled yesterday, so I had a very good sleep last night. But about 1:00 this afternoon, I started feeling very sleepy and wanting a nap. I have been fighting it and probably won’t get that nap. I bet I have an early night though.

I had a very special experience this morning. A man who had been my church pastor around 1991, heard from good friends of mine about my cancer. They gave him my number, and he called today to pray with me. It was absolutely lovely to talk to him again and to hear about his wife, family and 11 grandkids! Daniel is around my age, so when he was my pastor, he and his wife were also friends. He’s a true Christian man, kind, loving, not judgmental. His words brought me comfort and confidence this morning. He also told me to call or text him anytime, to consider him my pastor if I like.

I’m still waiting for side effects, but at least two days in, I’m feeling well, mostly have my appetite, mouth is fine and no problems with hands and feet. Yet. Yay.

Day 5:

August 11, 2024

Five days in, and so far, it’s not bad. Yesterday evening, I had mild nausea, but it went away pretty quickly. Today, I have that burned tongue and lips feeling again. Cold things don’t bother my mouth, but the warmed up cheese Danish I had for breakfast did burn my mouth a bit. I guess a little dizziness, a bit of nausea, and a sensitive mouth isn’t too bad.

I lie in bed at night and imagine that my feet start to hurt. I wake up, stand up, and there’s no problem with my feet. My hands are fine as well. I guess I’m paranoid about the feet, because Dr. Z wants me to stop taking the meds if hand and foot syndrome shows up again. I’m afraid of what will happen if I have to stop taking the meds. Any chemo pills are going to have the same types of side effects, some even worse.

I’m having trouble sleeping. I thought I might be awake all night last night. the day before, I woke about 2:00, and the night before at 4:00. I can’t keep doing this. I’m doing my best to stay awake all day, hoping that will make me sleep better tonight.

I do worry about the meds. It could go different ways. My body could adjust, and I’d have few problems, not changing my life much. It could be that the meds accumulate over time, and the side effects get worse, like what happened when I was taking the higher dose. Well, I’ll only know as time goes by. One day at a time right now.

I never thought about how complicated life could become when I started chemo. Just the fact about how I have to flush the toilet twice and then wipe lid and seat with disinfectant wipes eliminates the ability to easily go somewhere that might involved being away from home long enough to need to use the bathroom. I never know what could happen. Will I be out with friends and feel nauseated? Will I be hit with the fatigue wall? I am feeling mostly positive, but I do have to think about these things, until I know how the new dose of Cabometyx is going to affect me. I’m planning to go to a beloved uncle’s funeral this week, and it will be a long drive there, a Catholic funeral, the afterward part, and then the long drive home. I guess I’ll just pray I have a healthy day on that day.

I guess I’ll post this now. Unless things start going crazy with side effects, I’ll probably be posting every few days.