Category Archives: Uncategorized

DID I SPEAK TOO SOON?

15 Thursday Aug 2024

Posted by in Uncategorized

≈ 3 Comments

Tags

, , ,

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

Posted by in Uncategorized

≈ 1 Comment

Tags

, ,

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.

Treatment plan Number Two

31 Wednesday Jul 2024

Posted by in Uncategorized

≈ 1 Comment

Tags

, ,

TREATMENT PLAN NUMBER TWO

I met with Dr. Z this morning to discuss the next steps, the new plan. Rosie timed the visit, and yes, it was five minutes. But I did get my answers to my questions, so it was a good five minutes anyway.

Dr. Z wanted to look at my hands and feet to make sure the hand and foot syndrome had cleared up. I wore my bootie style slippers, so it was easy enough for him to look at my feet. All is well there for now.

I will be taking Cabometyx again, but at a lower dosage, 40 MG now. He said that the company that makes this drug recommends 80 MG, but few people can tolerate it at that high a dose. I asked if there was some way I could stay with the original dose of 60 MG, something proactive I could do to protect my hands and feet. I said I’m not a wimp about pain. He brushed it off immediately. Rosie said he was making a stop motion in the middle of my speech. He said absolutely not and that many people can’t tolerate the meds at 60 MG. He assured me that the 40 will still work on the cancer. He also seemed greatly concerned about the hand and foot syndrome. He told me that if I start developing the same issue again, I should stop taking the drugs immediately. Don’t wait to check with his office, just stop. The hand and foot syndrome can get so bad that the skin starts to peel off those apendages, and we don’t want it to get so bad. Okay, I’ll stop if I get a twinkling of that pain again. It was so terrible.

After a discussion between my sister and me, I asked Dr. z about marijuana products to help with the loss of appetite. Never thought I’d see the day that I would ask about taking some kind of drug other than something prescribed by a physician. Lol. He said he can’t prescribe it, but he has a number of patients who take various forms of it to help with either nausea or appetite while on chemo. I think I’ll ask about it on one of the kidney cancer facebook groups I’m in, and tuck the info away for future if needed.

So, now I wait for the special compounding pharmacy to send the next batch of drugs to me. I expect to get those sometime next week, and we’ll start the process again. I’ll probably be back to the daily record as I start treatment again. Fun, fun, fun, as the Beachboys said. I go back to see Dr. Z in a month.

CELEBRATE THE GOOD DAYS

29 Monday Jul 2024

Posted by in Uncategorized

≈ 1 Comment

Tags

, ,

CELEBRATE THE GOOD THINGS

July 28, 2024

Yesterday, Rosie and I went down to visit our mom for the day, just for a girls day together. Just a tiny bit of family history, Mom was my dad’s second wife, not my blood biological mother, but she raised me, and she is the mother of my heart and soul, forever. We had the best time.

We went to lunch at a diner type restaurant. My appetite has finally started coming back, and I had part of an open face hot turkey sandwich, with mashed potatoes and gravy. It was so damn good. The turkey was tender, and there was no fat on it. the gravy was delicious. And what’s not to love about mashed potatoes with turkey gravy? I couldn’t eat the whole plate, but I did pretty good, considering my appetite lately. It’s an hour and a half drive from Mom’s back home, so I didn’t get a box to take the rest home. Too bad. I’d love to have it right now!

After we got back to Mom’s we just hung out and talked for several hours. It was exactly what I needed. I hadn’t gotten out of the house, other than for medical stuff, in a long time. and just hanging with my sister and my mom is the best!

Update on my physically. The foot sores are finally gone. No pain, and no trouble walking anymore. My tongue still feels a bit scalded, but I’m able to eat more which is good. The mouth rinse my friend Denise sent me really helps with that and the overall dry mouth feeling I have. I also found a good toothpaste that doesn’t burn my mouth. Today I went in for lab work, and the results all looked good to me, everything seeming to be in normal ranges. So, good things.

Wednesday is the next appointment with Dr. z, and that’s when we will decide what the next round of treatment will be. Understanding better about the side effects now, I plan to be proactive, and keep up the lotion and socks on my feet, keep lotioning my hands, and continue using the gentle toothpaste and mouth rinse.

Oh, the special compounding pharmacy called to check in again. They asked me about the severity of my side effects, when they came, how long they lasted. They report this info to the company that makes the chemo pills, so they can keep track of everything. It’s all appreciated.

Well, nothing more until Wednesday. It’s ironic that I’m getting over the side effects just in time to start taking something again! Life is funny that way.

IN BETWEEN

20 Saturday Jul 2024

Posted by in Uncategorized

≈ Leave a comment

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 17th. I think he took even less time than when we’re in the office. Lol. He wants to see me in person on the 31st 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 17th. I think he took even less time than when we’re in the office. Lol. He wants to see me in person on the 31st 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 31st, 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 31st, 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.

WILL IT EVER END?

14 Sunday Jul 2024

Posted by in Uncategorized

≈ 1 Comment

Tags

, , ,

WILL IT EVER END?

Day 29:

July 14, 2024

I’ve now been without the Cabometyx for five days. I don’t really feel much difference, still little to no appetite, occasional nausea, mouth still dry and tongue feeling like I burned it eating something too hot. But the worst is the foot sores.

The sores are terrible; the pain is extreme. If they asked me about the pain level, from one to ten, I’d give it an eight for sure, maybe a nine. Except that I remember my recovery from the pain after my last knee revision surgery, and that surely was slightly worse. It’s agony to put my weight on my feet! I’ve been using my old walker, but that doesn’t take all the pressure off the foot. The right foot is the worst, with multiple blister-type sores on the heel. I’m supposed to go get lab work done tomorrow, and I have no idea if I’ll be able to walk for that. If I can get out to Rosie’s car, maybe we can use a wheelchair at the medical facility.

We’ve tried a number of things to ease the pain in my feet. Doug is faithfully and blessedly putting the curel lotion on my feet multiple times a day. He went online and did research about treating these damn sores, and since then we’ve tried an ice pack as well as lotion and then socks on the feet.

I feel kinda discouraged because of the foot sores. I want them to get better NOW!!!! For the past several days, I’ve sat in my big chair with my feet up, or lain in my bed, but rarely done a thing, because it just hurts too much to put my weight on my feet or to walk anywhere. I want it to be over! I want those sores to go away. I’m tired and frustrated and stressed beyond belief. I’ve long sort of joked a bit about how I’ve handled being born and having all my life the juvenile arthritis. I’ve vowed it would never stop me, and I say that I’ll “walk into my grave”, when my time comes. I would never have dreamed that anything could be more painful than JRA in a flare up, but this is. I can work around the arthritis pain, but this is completely different. I who downplays pain regularly, find myself whimpering when I first stand up from any seated position or as I hobble from my bed to the bathroom and then back to bed or to the living room. Several times, the pain has been so intense that I have felt like I might vomit. This is no way to live. How do people do this? Did Dad have foot sores? I remember a lot of his symptoms, but I don’t remember about that one.

I was afraid to take a shower because I have loofa bath mats in my shower, and I knew they would hurt like crazy to step on. But I was desperate for a shower today, as it had been a couple. Doug had the idea to put socks on me and have me go in the shower with them. I had tried stepping in normally, and I’d nearly wept, or thrown up, from the pain when I stepped on that loofa mat. So, I rested a while and then put on socks and tried again. And it worked! It wasn’t pain free, because I was standing on my poor feet, but I was able to shower and wash my hair, and the loofa wasn’t feeling like it is trying to carve into my foot. It’s amazing how things we take for granted can become the sweetest of blessings when we can accomplish them. Taking a shower is normal, not something we think about. But when you can hardly bear to put your weight on your feet, and your shower isn’t one you could use a shower chair or bench in, being able to just get clean was wonderful. I also felt much better about myself.

I’m not sure I mentioned this before, so if this is repeating myself, well, read it again. One day last week, I sent a message to Dr. Z asking if I still need to get the labs done, if there was anything to do about the foot sores, and if I could move my appointment up. He said, yes to the labs, they’ll go away on their own about the sores, and I now have an appointment for this

Wednesday, a video appointment! I guess we will then decide where we go from here in regard to my treatment. I want to start treatment again, but how I dread starting treatment, if that means more misery from the chemo!

On the good side of things, my friend Joylene is coming for a visit! I’m so happy. She and her husband Dan moved to Georgia last summer. We’ve been friends over 30 years now, and I don’t think we’ve lived so far apart from each other since then.

Reminder: If Dr. Z decides to change meds or change doses, ask what I am to do with the highly dangerous Cabometyx I still have.

Big Changes

09 Tuesday Jul 2024

Posted by in Uncategorized

≈ 1 Comment

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?

Two weeks of chemo done!

01 Monday Jul 2024

Posted by in Uncategorized

≈ 2 Comments

Tags

, , ,

Day 12:

June 29, 2024

It was an up and down day. I woke up with something I thought was a bug bite on my back, and it hurt like hell. At the same time, my chest hurt, if I moved, laid certain ways, or breathed deeply. My sister came by and checked it out. There was no bite, just some moles, none of which were inflamed, red or anything. And they didn’t hurt when she touch, only when she pressed on the one in particular.

The chest pain is hard to explain, but it wasn’t like a heart attack. It felt as if someone had beaten me. It was a bone and muscle pain, not a heart or breathing pain.

I also started having the burning in my mouth again. I felt feverish, grumbling about not buying a new talking thermometer the moment I discovered mine was no longer working.

So, I called the oncology off hours number. I got through to a Dr. Lee pretty quickly. He set my mind at ease. He wasn’t too worried about the chest pain, since by then I could take a deep breath and it didn’t hurt much, until I got to the end of the deep breath. He told me if it continued or got worse to go to the hospital. I haven’t had to do that yet, so give me a gold star. He was concerned about the mouth pain and said that if it got worse I should give myself a day off from the chemo pills and call Dr. Z today. By then the mouth burning was better, so I have not called and have continued to take the meds. It feels like every day it’s something new, or something old back around for a new visit! Ain’t life grand? I was glad, however, to have that off hours number as a resource. It put all our minds at ease about that day anyway.

While Rosie was here, we talked about the future. Doug does have to go home for a while, probably in mid-august, following the first set of post pill popping scans, to see if the meds are doing anything for the cancer yet. When he does go home, Rosie and her husband are going to come and stay with me. They’re not comfortable with the idea of me being alone right now. Some days I feel so horrible. Often I write this journal as a series of points, describing what specific side effects I had today. But sometimes, I just feel bad, weak, sick, shaky. My shower is hard to get in and out of, and everyone will feel better if I’m not alone for a little while. Well, not for days upon days anyway. I can’t think of anything more wonderful than having Rosie and Chris and their two dogs here! And oh the incredible feeling of knowing I am not going through this alone, knowing how much I am loved, and how deeply people want to stand by me. Sure, I’m the one with the cancer, and to paraphrase an old folk song,

“I’ve got to walk this lonesome valley,

I’ve got to walk it by myself,

No, nobody else can walk it for me,

I’ve got to walk it by myself.”

That may all be true. But though I have to walk this path, it doesn’t mean there aren’t loved ones who will hold my hand as I walk, who will catch me when I stumble on the path.

The greatest blessing God gives us is friendship. And I have been so richly blessed in mine. Doug, Joylene, and Rosie. My life would be empty and bare without them. Joylene will probably come for a visit later this summer or fall. Rosie, yes, she’s my sister, but she is also one of my best friends. I am teary as I write about these three, because they are strengths and comforts given me, maybe for this exact time.

Day 14:

July 1, 2024

Yesterday, there wasn’t much to speak of in terms of chemo reactions. I actually cooked! I have a delicious recipe for a zucchini and mozzarella pie, and Doug and I made that together. I admit, I hit the wall when the food came out of the oven. Thank God for the amazon smart oven, so I didn’t have to heat up my house baking a pie! You know that level of tired, where you absolutely cannot do one more thing? That was me. And from the standing to do the preparing, my feet were so sore, arthritis sore. They are still sore today. I was too tired to eat, happens to me, and I think loss of appetite is definitely aside effect of chemo I’ve gotten big time. At 7 in the evening I went to bed. I was that exhausted. I slept till around five this morning. I even got up in the night to use the bathroom and still went back to sleep. That’s even with the double flushing and the required disinfectant wipes on surfaces. Yes, that’s all required because of the fact that these pills are a wee bit radio active! Yee haw! Can I work that into my “drinkin’ beer through a straw” song?

Today, oh today. I have felt miserable all day. Feverish again. My hands have hurt off and on, with that feeling like I put them in too hot water or spilled hot melted cheese or wax on them. Here’s where my history works against me. I tend to ignore this pain. I have to remind myself that this is considered a serious side effect and I should immediately stop what I’m doing and lotion up. But if I’m in the midst of something, like typing maybe, I tend to ignore. Add this to the list of things to discuss with Dr. Z on Wednesday! I’ve also had a little bit of diarrhea today, but that might have finished already.

I also notice my voice, it feels weak and sounds weak to me. sometimes, when I’m talking to someone, it will just go out on me. Poof it’s gone. Got to remember to add that to the beer through a straw song and to tell Dr. Z.

In other words, today has just been a shit day! Grumble grumble. Tomorrow has got to be better. But today, I feel like someone who is taking chemo, more that I have at any time before. Two weeks of straight chemo pills; third week begins tomorrow. Wow. seems weird I’ve already been doing this for two weeks!

And by the way, I’m going to eat leftover zucchini pie tonight. Damn it! I’m gonna. I want it.

Treatment Days 8 Through 11

28 Friday Jun 2024

Posted by in Uncategorized

≈ 1 Comment

Tags

, , ,

Day 8-:

June 25, 2024

Today has been a bad day. I have not really felt well at all. I slept well last night, got up just in time to dress, care for my dog’s morning routine, and then take my pill. But the day went to hell after a while, and it hasn’t recovered yet.

Good thing was that Doug fixed me a delightful smoothie, milk, fresh strawberries, a banana, some plain yogurt, and a little vanilla ice cream. It tasted great and went down well. My hands weren’t hurting today, and I thought I was on a good road for this eight day.

But then, I started developing a headache, pretty strong one at that. I also felt like my pulse was racing, heart beating just that bit too fast. There are big warnings on this med about high blood pressure, and that was one side effect that scared me. Around noon, the exhausted feeling came over me, so I lay down and slept for about three hours. It was hard to wake myself up, but I got a text from my sister saying she might come by to take pictures of some documents I need to send to someone. She asked about my hands, giving me a need to answer the text. Also, it was nearly time to feed Shani, and though Doug is willing and happy to feed her for me, she is my guide dog, and as a nearly 50-year guide dog handler, that responsibility is bred in my bones. Besides it makes me feel like I’ve done something with my day!

Doug had gone for a walk before it got too hot around here, and he’d brought me a frappuccino from starbucks, caramel ribbon crunch. It had been in the fridge while I slept, but it was still cold, partly icy, and just tasted good. However, now I feel nauseated. The headache is back, and I just feel generally and all over bad. It’s hard to pinpoint more details, except that I just don’t feel well. Ugh.

I want to say some things about my incredible friend Doug. I am blessed beyond words with such a friend as this. He has put his own life on hold, flown down here, and is staying goodness only knows how long, to help take care of me. My sister Rosie is close too, but she has her own job, husband, and family to take care of. She’s here often, but she couldn’t be here 24/7 during these first few weeks. Doug is retired, and he has been here every step of this journey so far, helping in whatever way he can. He makes sure I eat, fills my hydro flasks with water, cooks for me or makes the smoothies, listens to my fears and worries, gets up every day to hang out while I take the pill. He does his own thing too, which I encourage. The caretaker must take care of himself first and foremost. He takes time to get out with his dog, or to read, often sitting nearby but using earbuds to read an audio book. But he’s there, and I know I only need speak a word, and he’ll be at my side to take care of what I need. God has truly brought such a friend into my life. We met 25 years ago in a guide dog training class. Perhaps for this exact time in my life, and various other times in both our lives, but our friendship has only gotten stronger through all the years. The greatest gift the Lord gives us is our friends, and I know how rich I am in this gift.

Days 9 and 10:

June 26-27, 2024

Yesterday wasn’t too bad. I didn’t sleep well the night before, so I went back to bed for a while, after being up for a few hours. Overall, except for insomnia tiredness, and a slight headache, I felt pretty good. I found myself thinking, is this how it is. Am I going to skate through this? Does this relative feeling of good mean the meds aren’t working, or is my body just handling it well? And, possibly most important of all, am I ignoring side effects, because I’m so used to ignoring discomfort and pain from growing up with arthritis? But it was a good day, and I’ll take them where I can.

Disappointed to write that I did not sleep well again last night. am I having reverse fatigue, as in increased insomnia? I’m determined to stay awake all day today, unless the fatigue comes again, that moment where I hit the wall, the lightning bolt of exhaustion overtakes me, and I must crash.

Had a video call with one of the nurses in Dr. Z’s office this morning. This was a scheduled appointment. My sister couldn’t be here for it, but Doug sat in and made sure I didn’t forget to describe all my side effects, or forget to ask questions. I asked a few things. One was can I believe that maybe I’m just going to do well on these meds, or do they accumulate and get worse over time, or what. She told me she couldn’t predict that. Makes sense really, as everyone’s experiences will be different. Anyway, it was good to have the check in. I made sure to tell her about the headaches, the fatigue, the occasional nausea, and so forth. She is still very concerned about the hands, and warned me again to continue to use the Curel lotion often. She wants me also to use it on my feet, but it’s hard to do that. I have to figure out a system for it. She also warned me against ignoring side effects that I should report. I reiterated that having grown up with the arthritis, it’s not natural for me to focus on every little problem.

Carry on, that’s the word for now. I meet with Dr. Z next week, Wednesday the 3rd. I know I’ve complained about his lack of time and explaining, and all that, but I’m so impressed with how the office has rallied around me through these first days of treatment, the constant support, and I feel like I can forgive his lack of bedside manner.

I was so tired this morning, and Doug, in his kindness, bought me Starbucks from doordash! It helped a lot, but now I feel that vague nausea. Ugh!

It’s later, still afternoon, and I feel much worse. For the first time since the first night, I had some diarrhea. Nausea is strong now. That horrible wiped out feeling is overshadowing my good intentions to stay up all day, so as not to risk another sleepless night. I’m supposed to participate in an advisory board meeting this afternoon, for my favorite movie review podcast, but I feel so awful, I don’t know if I can do it. Ugh. I missed last month’s meeting, and I want to be there. It’s just a zoom thing. I guess I’ll just have to see how I feel in an hour.

Day 11:

June 28, 2024

Today has just been weird. I finally had a decent night sleep, after my last two night being bad. But when I woke up, my chest felt like someone had beaten me during the night. Not heart pain, but right in the middle of the chest. I don’t consider that as a side effect, but if it continues, I will mention it.

I had the fatigue thing again, and slept about three more hours today. Hoping that won’t interfere with my sleep.

I took a shower around 4 in the afternoon, after feeding my dog. And things started going not so well. I brushed my teeth, and the paste made my mouth burn. Yeah, sometimes, extra strong minty toothpaste might do that, but I use sensitive toothpaste varieties, and it’s never done that before. However, my sister was coming over, so I promptly forgot about the mouth burning. We ordered a pizza from Domino’s, their spinach and feta pizza. It’s got a garlic cream sauce over the fairly thin crust. It has what it says, spinach and feta on the pizza, nothing that would be a problem in my mouth. My mouth burned with every bite. Rosie and I both had a beer with our pizza, and the beer burned too. My tongue and my lips were the ones burning, and let’s not make a country music association with the idea of burning lips. Mouth sores are a serious side effect of this medication. I remember during my dad’s chemo, it hurt him to eat anything, and he lived on ensures, which he drank through a straw. I do have straws, for the times that my doordash order arrives without one, when a straw should be there. So, I finished my beer with a straw. Lol. Okay, that is a country song in the making. “Drinkin my beer through a straw…” I like it. I’ll have to work on the lyrics!

I just now drank some water, and it did not burn. Good thing, huh?

I think that rather than diarrhea, I’m getting the opposite side effect, a bit of constipation. This is a known side effect, so I have meds for it. If things don’t, well, start moving by tomorrow, I’ll try one. I have a most difficult time sleeping straight through the night, so I’m not looking to try anything that could wake me up when I need to be asleep. Very light sleeper here; the slightest sound can wake me up, and if I have to get up for something in the night I often don’t go back to sleep. So, we’ll just wait on this possible effect.

treatment days 4-7

24 Monday Jun 2024

Posted by in Uncategorized

≈ 2 Comments

Tags

, ,

Day 4:

June 21, 2024

The fourth day started pretty well. I slept great, didn’t get up to 6:30 in the morning. Took the pill at 7:15. Once the required hour past pill time had gone, Doug made me a smoothie, a recipe we have that uses fresh strawberries, Milk and a package of instant vanilla pudding. Churned up in the Vitamix, it was quite good. I was hungry, and I felt comfortable afterward. Drank a cup of tea, and of course, the ever-present flask of water. I hoped today would be a no side effects day.

It’s now afternoon, and I feeling very tired. Ate a little lunch, some leftover potatoes, and my stomach is not feeling so good. I also feel hot, almost like a hot flash, but since those days are long gone, is this some weird reaction, or just a benefit of my tummy feeling all mixed up? Going to lie down and read to see if everything calms down.

Day 5:

June 22, 2024

I never felt really good yesterday. Slept a couple hours in the afternoon, didn’t eat much all day, and went to bed around ten. And that’s when the trouble began.

My stomach was not happy last night, not at all, not all night. I did doze off when I went to bed, but I woke sometime between midnight and 1AM, feeling sure I was going to throw up right there and then. My gut and my bowels and any other part of the digestive track were roiling. I felt miserable. Sitting up, I took deep breaths, switched to a well loved book to try to calm my mind down, and hoped everything would calm down and let me sleep. Nothing ever calmed down. Eventually, I got up and took one of the trusty nausea pills prescribed by Dr. Z. In an hour or two, the nausea faded, but in general I did not feel well.

I finally started to doze again sometime after 5AM, but suddenly, my guide dog Shani started whining, wanting to go outside. I wanted to ignore it, to go back to sleep and catch up. I didn’t though. Ignore a dog’s need to relieve at your own peril! And I was afraid if I fell back asleep I’d miss taking my pill, precisely at 7:15. I got up, took care of my dog and waited an hour to take the pill. As soon as I took it, I went back to bed and slept for around four hours.

Since getting up again, I feel generally okay, not 100 percent well, but not bad. I had a late lunch and am letting my body process it, hopefully quietly and with no fanfare. But I still feel overwhelmingly sleepy.

I know fatigue is supposed to be part of the side effects, and I’ve noticed I might be seeming to have a normal day, when all at once, I feel exhausted and in great need of sleep. I need to be able to give myself permission to rest when needed. My side effects so far don’t seem so bad, and my tendency is to think I’m feeling normal things, not chemo pill things. I’m not sure if that’s true or not. It’s part of why I am writing this treatment days journal, to track what is happening to me, so I can learn what is to be my normal for the foreseeable future. I will also discuss this with the nurse on our video call next week. I wonder if that process will be accessible.

Day 6:

June 23, 2024

To finish yesterday, it seemed all my body wanted to do was to sleep. After my horrible night Friday-Saturday, I went back to bed and slept a good four hours after taking the Cabometyx. Then I suddenly felt tired after feeding my dog and laid down again, falling asleep for about three hours. Went to bed at around 11 and again slept all night, until after 6 AM.

I felt rested when I got up. Too my pill, took a shower, and once my hour past pill time, I ordered doordash for starbucks. Doug had gotten me a doughnut yesterday, and I had that as breakfast. I marveled at how great I was feeling. A little vertigo here and there, but hey, stand still, take a breath or two and all is well. Am I really taking chemo pills? Possibly radio active pills? Such strict protocols for taking and disinfecting things, even more strict protocols if someone other than I must handle my meds? But yay, feeling good is a good thing.

And then noon or so struck and things changed. That sudden feeling of exhaustion crawled over me again. And now, the palms of my hands are kinda sore. As if I’d put them in hot hot water, or spilled super hot coffee, not enough to blister, but that hot feeling. If I touch my arm for instance, with the palm of my hand, my arm feels cool, but the palm feels warm. I need a sighted person to look at my hands to see if they are red as well. This is another potential side effect, one they warned me about multiple time, hand and foot soreness. This can become quite serious. No hot hot water, moisturize often, regularly. Don’t ignore this symptom. Did I mention possibly radio active pills a minute ago? isn’t this a sign of radiation? Surely, I’m imagining this?

Everything is just bizarre to me right now. I, who spent my entire life learning to avoid pain and strangeness in my body, due to my juvenile rheumatoid arthritis. I who had to ignore all these things, or I wouldn’t have been able to get through even one day due to the pain, stiffness and other fun things. Now I have to watch for the slightest changes in my body, have to be aware of the little things like hands that feel too hot, dizzy spells, fatigue, how my digestive system is working today. It’s overwhelming and so much against my natural impulses. It hasn’t even been a week, and I’m already tired of it all!

And yet, hearing from other patients or loved ones of cancer patients who have taken these very drugs, so far, my experience is downright mellow. How can that be? It may change as the meds continue to accumulate in my blood, attacking bad and good cells. It may stay the same. Too soon to tell, I guess. I have much to discuss with the nurse on Thursday.

Day 7:

June 24, 2024

Woke up this morning around 3:20-ish. Stomach was a mess, bad nausea. I lay there fighting it for an hour before finally getting up and taking a nausea pill. Of course, I didn’t go back to sleep. I stayed there until near six, reading a book, trying to keep my dog on her schedule. She knew I was awake and started whining for potty and breakfast way too early.

My hands seemed fine when I woke in the night, but now they are hurting again, a little more than yesterday. My neighbor said they weren’t red when she came to clean the yard yesterday evening. I wonder what she’d say today. I guess a message to the oncology office is in order.

Meanwhile, I wait 20 more minutes to take the pill and begin a new day of what’s going on with my body today.

I had the hand tenderness off and on today. Sent a message to the oncology office. Nurse Laura called me this afternoon to discuss. Dr. Z is concerned particularly about this side effect. They advise using luke warm water, moisturizing frequently throughout the day with the curel lotion, and let them know if it gets worse. I do have a meeting with the nurse, video meeting on Thursday of this week, then visit with Dr. Z next Wednesday. If the hands thing continues, they may want to see me sooner. This could mean either a dosage decrease, or a new medicine. I don’t want to do that. Fingers crossed that this particular side effect stays mild or goes away altogether.

Another day when I felt exhausted suddenly, practically falling asleep in my chair this afternoon. It comes on suddenly. I laid down after doggie dinner and slept for three hours or so. Now I feel wide awake. Oops!

The first couple days I took the meds, I seemed to have more of an appetite. Loss of appetite is a potential side effect. Now, the last two days, I don’t really feel hungry at all. I am eating and trying to drink enough water, but I fear I am falling down on the job. This morning, my friend Doug made me the best smoothie, with strawberries, a banana, milk, vanilla ice cream, and a packet of instant breakfast. Tonight, I had mac and cheese. All the dietary stuff says eat several small meals a day, but it’s hard to do that. Now I wonder if my lack of appetite is a side effect, or just my usual lack of interest in eating. Hmmm.