BIG CHANGES

Treatment Journal

Day 22:

July 9, 2024

Big changes here, big changes.

I know I haven’t posted in a while, but it seemed like I was saying the same things over and over. Don’t feel good, blah blah blah. Not that I haven’t had my problems or good days. In fact, some of the problems have gotten so bad that Dr. Z has put the meds on hold until my next appointment.

The big problem that has developed is the hand and foot sores, particularly foot sores. Have you ever had a sun burn? How about a second degree sun burn? I had one when I was a little girl, and I still remember the cold baths my folks gave me. I was the only little kid on the beach during the summer with long sleeves, long pants and at least socks on. And then the tips of my ears and the part in my hair would get burned. This was before sun screen by the way. Anyway, these foot sores are like a second degree sun burn on my feet, pain, blister type sores. It’s so hard to walk around right now, and I couldn’t get by without my friend Doug being here to help me by doing lots of things for me, so I don’t have to put weight on my feet. I even wish I had a wheel chair, just to get from my bed to my living room chair, or from that chair to the bed!.

In the meantime, there’s been one hell of a UTI, urinary tract infection. Remember I said the doctor sort of blew it off, that the lab results were contamination, not infection. Well, that was completely and absolutely wrong. Starting a few days ago, I had every symptom of a UTI, painful peeing, urgent need to go and then hardly producing anything, pain after the frequent and minimal pee sessions. I finally called the office yesterday, called the cancer triage line to report about the UTI and the foot sores. They called me back after talking to the doctor. He was going to call in a prescription for the UTI, and he told me to hold off on taking the Cabometyx immediately. And just when I’d ordered my next round! When I hadn’t heard from the pharmacy by late afternoon, I called to check on the antibiotics, and they said the doctor had sent in the prescription, but he’d only written it for five pills. This is wrong. It should have been ten pills for five days! The pharmacist reached out to the doctor office, but it was late in the day and didn’t expect any word until today. I called back this morning, and they still hadn’t heard back! When I called this afternoon, the correct prescription had just come through. So, the pharmacy will deliver it tomorrow morning. Ugh. In the meantime, I have only one kidney, and I’ve been running around with a UTI for goodness knows how long!

Yesterday, or was it Sunday, I had a completely humiliating, embarrassing and horrifying incident. Remember I was still on the meds. I had a major bodily accident, literally with no warning, no chance to get out of bed to get to my bathroom. I was crying with embarrassment and shame, horror at having an accident at my age, humiliated to have to ask Doug to help and change sheets. Even though I knew I could develop this symptom, I didn’t expect it to happen like that. Fortunately, m I’d been prepared and had meds for it which I took right away. All has been well since.

Well, now, here I am, no cancer treatment for now and feeling pretty freaked out about it. I’m supposed to wait until my video appointment with the doctor on the 31st of this month. I decided today that I’m not happy waiting three weeks to decide what happens next, so I’m going to call tomorrow to see if it’s possible to move up the video appointment.

And that’s where things are now, on hold. No idea whether he’ll let me go back to the Cabometyx, at least to finish the first and second rounds. Does he still want lab work, now I’m off the meds? What happens next?