IN BETWEEN

I don’t know what treatment day this is anymore. When we start the next drugs, I’ll start counting off the days again.

I call this update, in between, because I’m in between treatments. There hasn’t been much change since my last update. The hand and foot syndrome—at least I know it’s official name now—has still been bad. I’ve been using a walker to walk around, and mostly sitting in my recliner or lying in my bed. Doug has been doing everything, trying to get nourishment down me one way or another, feeding and caring for my guide dog Shani, putting the lotion on my feet multiple times a day, and everything else. Today is the first time I’ve been able to walk around the house mostly without the walker. I’ve felt shaky and sweaty and fragile, but I’ve been walking. So, improvement, something to celebrate! I celebrate every victory. Today is the first day I haven’t gone back to bed by 10 in the morning, so another victory.

I had a video appointment with Dr. Z this past Wednesday, the 17^th. I think he took even less time than when we’re in the office. Lol. He wants to see me in person on the 31^st of this month, so no new treatment yet. I believe he’s thinking we’ll stick with my old pal Cabometyx, but we’ll try a lower dose. Of course, my mind goes to the place and asks, but how well will a lower dose work against cancer? But in spite of his lack of bedside manner, I trust Dr. Z, so I trust him to try to find the right treatment. I understand that finding the right dose of things can take a while, and I’m here for it. I mean, what are my options, got to treat it after all.

I had a voice mail from the special pharmacy. I called them back today, and it was just a 21-day check in. Of course, we’re almost two weeks past that time frame, but my iPhone hasn’t been showing me my most recent voice mails, so I didn’t know. I had a lovely talk with a pharmacist today. I asked her some personal questions I won’t put in this journal, and she was so helpful and took it all in stride. Weird thing was, she didn’t know how to dispose of the 60 MG Pills. She looked in her reference manuals, on the sheet that comes with the Cabometyx, and nothing showed up, except do not throw away and do not flush. She suggested taking the meds to my appointment with oncology. She pointed out that they deal with all kinds of chemo and must know how to dispose of it properly. She told me they actually incinerate this stuff normally. Did I say before that these meds are dangerous? Yeah. Anyway, I told the pharmacist how much I appreciate that they follow up, and that I feel so supported on this journey, by the pharmacy and the doctor’s office people. I never knew it could be that way. She also told me that if I had questions of a more female topic, I can always ask specifically to speak to a woman pharmacist. It’s such a relief to have so much support from the pros in this cancer treatment world!

My appetite is still not good. I wonder how much weight I’ve lost in the weeks since treatment started. Even when I feel hunger, I can only eat little bits at a time, and almost everything makes me feel sick. The smoothies mostly make me feel good, and Doug definitely loads them up with calories, fruit, and protein. Also, the ensure. You’ve got to be careful with ensure though, reading labels is a must. Some of them have artificial sweeteners, and I hate those. I can taste them in anything. And besides, I’m supposed to be ingesting high calorie stuff, so no artificial sweeteners.

Wow, today, I’ve been awake since 4 AM, and it’s almost noon, and I’m still up! Five points to me.

IN BETWEEN

I don’t know what treatment day this is anymore. When we start the next drugs, I’ll start counting off the days again.

I call this update, in between, because I’m in between treatments. There hasn’t been much change since my last update. The hand and foot syndrome—at least I know it’s official name now—has still been bad. I’ve been using a walker to walk around, and mostly sitting in my recliner or lying in my bed. Doug has been doing everything, trying to get nourishment down me one way or another, feeding and caring for my guide dog Shani, putting the lotion on my feet multiple times a day, and everything else. Today is the first time I’ve been able to walk around the house mostly without the walker. I’ve felt shaky and sweaty and fragile, but I’ve been walking. So, improvement, something to celebrate! I celebrate every victory. Today is the first day I haven’t gone back to bed by 10 in the morning, so another victory.

I had a video appointment with Dr. Z this past Wednesday, the 17^th. I think he took even less time than when we’re in the office. Lol. He wants to see me in person on the 31^st of this month, so no new treatment yet. I believe he’s thinking we’ll stick with my old pal Cabometyx, but we’ll try a lower dose. Of course, my mind goes to the place and asks, but how well will a lower dose work against cancer? But in spite of his lack of bedside manner, I trust Dr. Z, so I trust him to try to find the right treatment. I understand that finding the right dose of things can take a while, and I’m here for it. I mean, what are my options, got to treat it after all.

I had a voice mail from the special pharmacy. I called them back today, and it was just a 21-day check in. Of course, we’re almost two weeks past that time frame, but my iPhone hasn’t been showing me my most recent voice mails, so I didn’t know. I had a lovely talk with a pharmacist today. I asked her some personal questions I won’t put in this journal, and she was so helpful and took it all in stride. Weird thing was, she didn’t know how to dispose of the 60 MG Pills. She looked in her reference manuals, on the sheet that comes with the Cabometyx, and nothing showed up, except do not throw away and do not flush. She suggested taking the meds to my appointment with oncology. She pointed out that they deal with all kinds of chemo and must know how to dispose of it properly. She told me they actually incinerate this stuff normally. Did I say before that these meds are dangerous? Yeah. Anyway, I told the pharmacist how much I appreciate that they follow up, and that I feel so supported on this journey, by the pharmacy and the doctor’s office people. I never knew it could be that way. She also told me that if I had questions of a more female topic, I can always ask specifically to speak to a woman pharmacist. It’s such a relief to have so much support from the pros in this cancer treatment world!

My appetite is still not good. I wonder how much weight I’ve lost in the weeks since treatment started. Even when I feel hunger, I can only eat little bits at a time, and almost everything makes me feel sick. The smoothies mostly make me feel good, and Doug definitely loads them up with calories, fruit, and protein. Also, the ensure. You’ve got to be careful with ensure though, reading labels is a must. Some of them have artificial sweeteners, and I hate those. I can taste them in anything. And besides, I’m supposed to be ingesting high calorie stuff, so no artificial sweeteners.

Wow, today, I’ve been awake since 4 AM, and it’s almost noon, and I’m still up! Five points to me.

Okay, if anyone reading this is uncomfortable with spiritual stuff, time for you to look away. In the last few days, I have felt the presence of the lord, surrounding me, supporting me, lifting me up and carrying me through this mess. I cried, as I told him how frightened I am, how I don’t want to die from this damn cancer, and I don’t know how to handle the treatment. I could almost feel his arms surround me. I know I will still struggle and stumble, but it was nice for a couple days to feel that sense of comfort and not being alone. Cancer in itself is a journey, as I’ve said before, that you travel by yourself. But for the last couple days, I have not felt so alone.

Feeling alone is not to negate the amazing support of people like Doug, Rosie, and other friends. I could not get through this without them. I am so thankful to have them in my life, and their love and willingness to be by my side every day of this journey.

Well, unless something major happens between now and the 31^st, this will probably be the last update until I see Dr. z, and we have a new treatment plan. Catch you on the flip side.

Feeling alone is not to negate the amazing support of people like Doug, Rosie, and other friends. I could not get through this without them. I am so thankful to have them in my life, and their love and willingness to be by my side every day of this journey.

Well, unless something major happens between now and the 31^st, this will probably be the last update until I see Dr. z, and we have a new treatment plan. Catch you on the flip side.

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 31^st 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?