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BAD REACTIONS

11 Friday Apr 2025

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BAD REACTIONS

April 11, 2025

This is a very long update, so grab a snack or a beverage and settle in for a bit of a journey.

I had my second immunotherapy treatment yesterday, and ended up on a bad trip, as we used to say when I was a teenager. Before I get to all that, let me back track a little.

For the most part, my body’s reaction to the first treatment wasn’t bad, as compared to the side effects from the previous two cancer meds. I definitely had a lot of fatigue and had to lie down every day. And the arthritis flare ups were and are horrible, worst I’ve had in many years. lots of pain, inflammation, and much fear of losing range of motion. But other than that, No nausea or diarrhea, no loss of appetite. I’ve been eating pretty well, but I am still losing weight. This still doesn’t bother me at all, as I’m pretty close to where I actually should be. If I go beyond that, then I’ll have to worry. Maybe.

I saw Dr. Z on Wednesday and had my monthly labs done that day. He’s checking for several new things, including thyroid, as apparently, this treatment can cause problems with the thyroid. The doctor was very concerned about the arthritis and offered to give me pain pills to help manage the symptoms. I refused. Frankly, I’m terrified of pain pills. I had to have a nurse convince me that using pain meds after joint replacement surgery would not make me an addict, and I never used them as often or as many as prescribed, never finished the at home prescriptions. It seems these days we hear all the time about adults who have a condition that causes them great pain, and how they became addicted. So, far, my primary care doctor and my sister do not believe I would allow that to happen, but I’m still afraid of pain meds, and besides, it doesn’t treat the inflammation which actually causes the pain. Anyway, Dr. Z wants me to have a scan in three weeks, and then see him on may 5. We’ll decide then if I should have the next treatment.

Now to yesterday. I started the day with a visit to my primary care doc, Dr. R, for my annual medicare wellness visit. I also needed him to fill out my medical form, as the last thing needed for my Guiding Eyes for the blind retrain application. Dr. R is an osteopath, and I consider him the best doctor I’ve had in my adult life. Before even entering the office for the visit, he’d refreshed his knowledge of my treatments and progress with the cancer. He advises a pneumonia vaccine, but he’ll check with Dr. Z first, to be sure there is no complication with my treatments. He’s like that. when he’s prescribed meds, he makes sure they are okay since I have only one kidney. He believes in treating the whole person, not just the reason someone walks in the door. He also thinks I won’t get addicted to pain meds, but everyone is letting me decide that. So, other than cancer, I’m pretty healthy. My lungs were clear and all else was fine.

Then it was on to the infusion center. I was somewhat anxious, even though I told myself that I’d already had this once, and everything should be just fine this time. My blood pressure was a little high but went down by the end. Like I said, I was anxious.

Rosie and I had stopped for lattes on the way to the center, since it’s a 45 minute drive. We had made plans to do some things after the treatment. Rosie had an errand in the area, and then we were going to get lunch at the nearby Greek restaurant. I love Greek food! We had to change our plans.

The treatment happened. First they do a lot of prep. Both the nurse and I have to wear a mask while she checks out my port. She also put a sterile drape on me before inserting the needle into the port. Two nurses go over the details of the treatment, the dosage, the time it should take and all that. Then they start the infusion. Rosie, Shani and I hung out for the 30 minutes of the treatment. This time, they didn’t keep me the extra 30 minutes to observe my reactions, and once the needle was out and the spot bandaged, we took off. And that’s when the fun began.

On the way to the car, we stopped to let Shani relieve. As we were walking to the car I started to feel cold, and by the time we were settled in the car, I was shivering. We had not refreshed our minds with the list of possible reactions and neither of us remember that shaking chills were something we should have called 9-11 about. My whole upper body, my torso, and my arms were shaking so hard, it almost felt as if they would shake right off my body. Rosie actually turned on the heat, and it was a warm day. I shivered and shook most of the way home. I’m sure Rosie and Shani were quite uncomfortable with the heater on, and even the parts of me that weren’t shivering wanted the heat off. And then I started feeling nauseated.

We ended up nixing Rosie’s errand and our lunch of yummy Greek food and heading for home as fast as we could get there. I thought about getting some hot chocolate, hoping it would warm up my insides, but with the nausea, I wasn’t sure I could handle anything in my stomach. It was best just to get home.

We almost made it! We were just at my driveway, not pulled into the garage, when the nausea swept over like the tide, and I couldn’t hold on any longer. Rosie stopped; I opened the car door. Leaning over, I could only hope I would miss the car and get the ground, as I threw my guts up. I wasn’t quite successful, and Rosie and her husband Chris had to clean part of the car yesterday. I feel bad and embarrassed about that, but Rosie eases my mind and doesn’t complain.

I went to bed right away, and Rosie went to the binder of info on Opdivo immunotherapy. Right there it said if I had shaking chills and or fever, call 9-11. Well, we didn’t know, so we hadn’t rushed across the street from the infusion center to the hospital and the ER. I called the triage line for Dr. Z’s office and got voice mail. That was at about 11:45. We had taken my temperature, and it was at 102, and then 101. In half an hour it had gone down to 99. I wasn’t shivering or nauseated anymore so I wasn’t worried. The triage nurse didn’t call back until around 2 or so. She took the details and said she’d talk to the on call doctor so they could advise for future incidents. She didn’t call back till well after 5. At that point, on call doc said I should go to the ER, since my temp had gone up to 102, but I wasn’t going to the ER. I was feeling fine, ate some ice cream for dinner, and didn’t feel like driving 40 minutes back to the hospital, to sit around for hours waiting for someone to tell me I was okay and hadn’t developed some kind of infection. I went back to bed, didn’t sleep too well, but still felt fine.

So, that’s where things are right now. I’m tired from not sleeping well. There is an extra blanket on my bed, and I was just too hot. Shani was crowding me. I think she was worried and just stuck as close to me as she could most of the night. All of that made sleep hard to find. My temp is normal, and I’m not nauseated or shivering. Think I’m okay for this round. I’m leery about the next one, and I’m pretty sure they won’t let us trot off right after the infusion, when they hear what happened to me. I’m just glad that whatever happened to me yesterday seems to be done. I’m somewhat scared or worried for the future, but that’s a kind of every day thing.

MAJOR UPDATES

09 Monday Dec 2024

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MAJOR UPDATES

December 9, 2024

I know I haven’t updated in a long time. I have been very sick for the past couple months and had no energy for writing. All my physical, mental and emotional energy went to trying to deal with all the side effects and more, trying to keep my attitude positive and hopeful, and just plain survival. However, some major things have happened, and it’s definitely time to update everyone.

Back in October I had a scan. It had been several months, and we wanted to see if the chemo meds were working. The results were pretty good; some of the lung nodules had shrunk a fair amount. But some appeared to have grown. Dr. Z thinks that the reason is my last scan was in April, but I hadn’t started the meds until mid-June. He thought the nodules had grown between April and June. With that comforting thought, I haven’t worried too much about those scan results.

Dr. Z was concerned about my side effects, so he had me try taking the meds for three weeks, and then having the fourth week off to recover some. It didn’t go so well. Each time I started a new round of the meds, the side effects came on faster and stronger than the round before. With the last round of the Cabometyx, about two days in to the third week, diarrhea hit hard and fast. Multiple times a day and every single day. one day in to the third week, new foot sores appeared. On one foot, the skin started peeling again where I’d had sores, and the other foot developed new sores where I hadn’t had any. I stopped taking the meds immediately as the doctor said. I was exhausted, hardly eating, no energy, depression falling hard on me. I was supposed to see Dr. Z the week before Thanksgiving, but other complications came along, and I had to cancel.

On November 19, A Day I’d waited for due to a book release I’d preordered almost a year before, I became very ill, with a still undiagnosed problem. Around mid morning, I started having a terrible pain all across my upper abdomen. It was agony. I went to bed because sometimes lying down helps when I have stomach pain. It didn’t help at all. I was in pain for at least 24 hours. In the middle of the night, I started vomiting, and that continued about a full day. I couldn’t eat anything and lived on any kind of liquid I could find. The pain had settled down to just the right side of the upper abdomen, so it was more livable. I was shaky and weak. I developed a fever, terrible chills, so my body was shaking hard for up to an hour, no matter how many blankets I piled on. My normal temperature is in the low 98 degrees realm, 98.1 or 3 usually. So, temps of 100.4, and 99.9 were definitely a fever. This fever, the chills, they’ve bounced around with me ever since when it all started. I even had shivers in the middle of the afternoon yesterday. The pattern would be, chills commence, I bundle up and pour on the blankets, then I get too hot and kick everything off. Then I start sweating, ending up soaking wet in a soaking wet bed. Last night was the first night in weeks that I slept well and did not have either chills or fever or anything in between.

Other than coke—I get the coke de Mexico because it has real sugar and not corn syrup—I couldn’t tolerate anything sweet. Ensure was too sweet for me. My sister brought me a milkshake, and we were both hoping that would get some calories into me, but I couldn’t drink it. It took days for me to be able to eat. The first thing I was able to eat was a little plain cream of rice with a touch of milk added. For days, really until the last few days, I could barely tolerate food. I tried different cereals, even chicken soup, and I’ve always loathed chicken soup of any variety. But that broth from the soup started helping me slowly, very slowly, begin to eat and start feeling a bit better. I ate a little on Thanksgiving, but sadly, though it’s my favorite meal of the year, I had to miss most of those yummy leftovers. Sigh.

I finally had that appointment with Dr. Z last week. I know I’ve talked a lot about his lack of bedside manner, and in the regular sense of bedside manners, he’s not one for it. But what he has is blunt, honest, straightforward communication. I can’t work with doctors who pussyfoot around and try to say things without coming out and just saying it bluntly. I’ve had an auto immune disease since birth, and I grew up with doctors whom my folks told to be honest and straight with me. I won’t accept less. I started the appointment by telling Dr. Z that I feel very discouraged. He said straight out, that I cannot take the chemo meds anymore. He said my body just can’t tolerate them. I was so thankful because that was what I hoped he’s say. He is going to switch me to something different, not a chemo med, and I’ll start that in January. He wants me to take this month off, so I can enjoy the holidays, and I think, to let my body heal and get strong before starting something new. He said the new med targets the cancer differently than straight chemo, but it isn’t always as effective as chemo would be. He said it’s much easier to tolerate. I’ll have another teaching appointment with the nurse before beginning the meds. Rosie looked them up, and they do have some scary side effects too, more mouth sores, nausea, you know, the usual crap. But since he says it’s much easier to tolerate, I’m going to try to think positively.

We also discussed immunotherapy. It’s a last resort option, due to my juvenile rheumatoid arthritis. But he pointed out that it might come down to immunotherapy or no treatment at all. If it comes to that, I will try the immunotherapy.

There were some weird numbers with my blood work this last time, but Dr. Z wasn’t worried, so I’ll try not to be.

The new med is EVEROLIMUS TAB 10MG. Now I have that name written down, I can do some research.

I’ll have another scan this month, I hope. We’re doing a full chest, abdomen and pelvis scan. I requested this because of that severe pain. I want to make sure nothing has spread or developed somewhere else.

As for my moods, I’ve been extremely down and depressed. During the two weeks with the stomach and not able to eat, I had pretty much made up my mind that I am going to die from this damn cancer. Dr. Z is not saying that, but I’ve been so sick, felt so miserable from both the chemo meds and whatever happened a few weeks ago with my stomach. I just couldn’t find a way to feel positive.

My best friend Doug is coming tonight and will spend three months with me. My sister will go home. I will miss the hell out of her. We decorated the house for Christmas the other day, and that has helped me feel a little happier. I even did some Christmas shopping this morning. Yippee.

Well, if you’ve made it this far, thanks for reading and following this cancer journal. I won’t really have much to say for a while, have to have the scan, get the results, have that appointment to learn about the new meds. I’ll try to update more regularly as things happen. It’s every changing, that’s for sure. I live one day at a time now, with no guarantee how I will feel from one day to the next. But, I’m still here.

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.

Treatment plan Number Two

31 Wednesday Jul 2024

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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

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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.

WILL IT EVER END?

14 Sunday Jul 2024

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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.

Two weeks of chemo done!

01 Monday Jul 2024

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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

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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.