WHOA, TOO MANY MEDS!

June 2, 2025

It’s been a while since my last update, and things have turned around somewhat here. It was crazy for a while. I can’t remember where things were with my last update, except that I was in a very low space at the time. As I titled this “too many meds” I’ll start there.

It seems I had developed another UTI, and my primary care doctor, Dr. R, prescribed some major antibiotics, because this was a particularly nasty form of bacteria. Well, the pills were huge, horse pills, the biggest pills I ever put in my hand. I knew I wouldn’t be able to swallow them. I asked if Dr. R could prescribe them in a liquid form or try a different antibiotic. He said he’d do the liquid but warned that it would cost more. How unfair is that? And yes, it did cost a hell of a lot more! But I have difficulty swallowing big things, not just pills. I have to cut meat into small pieces for instance, and I’ve been known to have a piece of a piece of bread lodge in my throat.

Along with that, I was taking the Prednisone Dr. Z had prescribed for the terrible arthritis the immunotherapy inflicted on me. And two weeks ago yesterday, I started the 20 MG dose of the Cabometyx for the cancer.

There were truly days I felt overwhelmed by meds. Each of them had to be taken at different times and had different rules about when, with or without food, and all the rest. Thank God I still have a good memory, and Rosie and I remembered things together. Cabo first thing in the morning, antibiotic liquid twice a day, different first of the day from the cancer meds. The Prednisone said to take at the same time every day with food, and since I started it around 4PM the first day, I had to start eating dinner early. Then I had to eat breakfast or a evening snack with the antibiotic, and of course with the Cabometyx, take that as soon as I get up with just enough water to swallow. Then wait at least an hour to eat or drink anything else!

My head was fair spinning from all the meds! Gun times indeed.

Now, the antibiotics and Prednisone are done, and I’m just on the cancer meds. Nice to have one tiny little pill to take once a day as soon as I get out of bed!

I had an appointment with Dr. Z last week. He wanted to know how the arthritis is doing. And at first, the arthritis was doing so amazingly well after starting the prednisone, that I could hardly believe it. I went from being barely able to use my hands, to back to pre-immunotherapy levels in a matter of two days. But now the Prednisone is gone, and my arthritis is not quite like it was from the immunotherapy, but it’s not my old baseline anymore. I’m still in an active flare up, and my hands/fingers, elbows, and shoulders are the worst hit of all. It’s very frustrating, but I’m working around it and refusing, as ever, to let the arthritis win. I’m stronger and far more stubborn than it is. Lol.

About the Cabometyx. I’m doing okay on this dose. I’ve got fatigue—when since treatment started last year have I not had fatigue—and sometimes a loss of appetite, but so far, so good. Rosie and I have been diligent about taking care of my feet, lotions and balms twice a day. I got some mouth sores after foolishly eating a hamburger with catsup on it, but those are better already. And mmm, was that burger good! I don’t have diarrhea, stomach pain or any of the other side effects I had with this med before. Of course, it’s only been two weeks, and I’d have to look at this blog to see how quickly I got foot sores last time. It’s the one side effect that scares me. Oh, and I’m not losing hair anymore! Yippee!

The current plan is that I will continue with this dose for the next months. I’ll get a refill on this and take the next full 30-day round, and then start the next one. Then I will see Dr. Z again, and we’ll plan a scan to see if this is doing any good. If it is, we’ll up the dosage maybe, or maybe we’ll up it only if it isn’t working. But whenever we up it, I’m praying and hoping that my body will acclimatize, and I’ll be able to handle the higher doses.

It’s important to know that all this treatment is unlikely to “cure” or to put the cancer in “remission”. This type of cancer doesn’t just go away. It’s rare even for it to go into remission. This may be something I have to treat the rest of my life. I hit the jackpot, as I was one of the 20 percent of kidney cancer patients whose cancer comes back after a full kidney nephrectomy. It’s also important to remember that though this is in my lungs, it is still kidney cancer, not lung cancer. It’s just that the cancer that started over four years ago in my left kidney, has now spread to my lungs. I don’t know what is going to happen to me farther down this road. I’m confident that God is in control, and He isn’t letting me walk this road alone.

To finish up this post, I’m pasting in a poem I wrote about the nodules in my lungs. I plan to publish this journal/blog, someday, hoping it can help or prepare someone else going through this, and I will publish the poetry I write during this time as part of this journal. This poem came as a result of the big nodule in my left lung sometimes pressing against my ribs. It’s got some creepy imagery, so be prepared.

THE CREATURE

I call it a creature,

The doctors call it a nodule,

But I know it is a creature,

It lives in my left lung,

Attached there, it grows, it feeds,

It’s a creature.

Parts of it move around in my body,

It began life in my kidney,

They thought they fixed it by taking the kidney,

But cunning, it hid, waiting for its chance,

And now it’s in my lungs,

Yes, it’s a creature.

Sometimes I feel it press against my ribs or my back,

It’s alive and it wants to grow farther into my body,

It’s a creature.

They try to pretty it up,

Make it sound not so bad,

using words like nodule,

But it lives, and it’s a creature.

It fights to stay,

It fights to move to new horizons inside me,

It wants to win against me,

It’s a creature.

It has smaller children in my lungs,

But the main creature is big,

It continues to grow, to feed, to move,

They still call it a nodule,

But I know, it’s really a creature.

Written May 23, 2025.