Tag Archives: Cancer journey

Treatment Days, 1-3

20 Thursday Jun 2024

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Treatment Days

Day 1:

June 18, 2024

I took the first chemo pill around 8 AM. With me being a morning person, that was probably way too late. Doug was in my bedroom with the two dogs. I was in my bathroom, cup of water ready at hand. I’ve kept the pill bottle in a special place and in its original box. Taking a deep breath, I opened the bottle, took out a pill, popped it in my mouth. And grabbed the water to swallow it down.

Then, I stood there, waiting. It seemed the whole world was holding its breath. Were the side effects going to burst out upon me, attacking at will? Would I feel anything? Notice anything? Nope, nothing. No weird feelings, no blasts of illness. No sirens and flashing lights. Okay, is that all there is? Leaving the bathroom, I decided to go about my day.

And that’s how it went, all day long. After an hour I ate breakfast, deciding to take the next pill a little earlier, gradually working it up until I was taking it closer to seven than to eight, because I’m always up with my dog by seven in the morning. I mean, I like breakfast and don’t want to eat it so late!

I felt fine all day, hyper aware of every single thing about my body, but all was well. The only thing was a little bit of diarrhea that night near bedtime. It was just one occurrence, nothing more. I slept like a baby that night, after not sleeping much at all the night before. Hey, maybe this won’t be so bad.

Day 2:

June 19, 2024

I moved the pill taking time up a little, as I’d planned the day before. Not by much. I understand about taking it at the same time every day. So, I took the pill and waited. I did not expect blasts, lights explosions of side effects or anything this time. But this time, I developed a headache. Not a bad headache, but a headache. Again, hyper aware of every single thing about my body. The headache wasn’t much. My watch has a heart rate app, so I checked it and my rate was pretty high. That worried me, so I laid down for a couple hours to rest, and everything calmed down. No other problems the rest of the day.

I’m being careful to eat small meals, drink plenty of water, moisturize hands and feet. I’m follow toilet flushing and disinfectant wipe protocol to the letter. Day 2, so far so good.

Day 3:

June 20, 2024

Took pill three a little earlier again this morning. Think I have it at a good time for every day. I’m going to set up a daily reminder on my Alexa device, so I never get distracted and forget to take this. A little dizziness and general weird feeling this morning, but it’s settling down.

I’m wondering if I’m just having a super easy time with these meds, or if they just aren’t doing anything at all, or probably more likely, if it will take a few days for the meds to really sink into my system, to accumulate in my blood and start attacking all those good and bad fast-growing cells. Will I then start having more side effects? They call these meds, chemo pills, so how can I have no side effects to speak of? It’s weird. I keep waiting for the axe to fall.

Approximately four hours later.

Well, now I’m having side effects! Why did I have to wonder why I wasn’t having them? Still not severe or debilitating, but … Well, nausea is the main thing today. Not vomiting, just feeling queasy. Not even enough to take anti-nausea medicine. Just enough to feel it and feel bad overall. My body feels like it wants to add to that problem in other but somewhat similar ways, but so far, not. Didn’t sleep much last night, and I’d love to go to bed, but I’m trying to stay up all day today. We’ll see. If this gets worse, I will go lie down, closer to the bathroom, and keeping my stomach quiet and resting.

Hours later again. Felt nauseated, or is it nauseous, most of the day. Have not thrown up or had any other unpleasant bodily uncomfortable actions. But I have felt like all that wanted to happen all day. Feeling tired, low and not very well right now. I’m going to eat some mashed potatoes, have more water, or maybe a glass of milk and then possibly go rest. If this is me on the third day, what will the fourth day bring?

NURSE LAURA, TREATMENT BEGINS

17 Monday Jun 2024

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NURSE LAURA: TREATMENT BEGINS

June 17, 2024

Today was my appointment with nurse Laura, a nurse practitioner in Dr. Z’s office. Per their request, I bought all the meds in, cancer and nausea and vomiting meds. Upon first entering, my blood pressure was a little high. I reminded them that last week’s was normal, and that I’m usually normal, but kinda anxious and agitated about cancer. They took the pressure again at the end of the appointment, and it was back in normal ranges. I need to dig out my talking blood pressure machine, because high blood pressure is a potential side effect of the meds, so I need to keep an eye on it.

Laura went over things in great detail. I was happy she gave me such parameters, so I can tell if something is beyond what could be considered normal. She said things such as:

“If you’re tired and take a nap and feel better, that’s fine. But if you are so exhausted you feel you can’t get out of bed, call us immediately.”

She talked a lot about mouth sores, warning me not to use any mouth wash that has alcohol, which many name brands do. She actually recommended mixing a teaspoon of baking soda in a cup of water and drinking that to help the mouth sores and to keep my mouth hydrated.

She also talked about the hand and foot side effect, something that can cause pain and redness in both. Apparently, it can become quite serious, so she recommends moisturizing the hell out of both hands and feet at least twice a day.

She talked and gave recs for vomiting, diarrhea or constipation, but I’ll spare you all the details on that. I have meds for nausea and vomiting, and she recommended what to take for the other two.

It’s important to know that these pills are basically chemotherapy pills. They are formulated differently from typical chemo IV meds, and this does work on kidney cancer. However, it does attack fast growing cells, and it can and does attack good cells along with bad cells. So, as with traditional chemo, I have to be careful about infection. She recommended masking up when I go out and frequent hand washing while at home. Also, due to the ingredients in the meds, she said to flush the toilet twice after I relieve myself and to use a bleach/disinfectant wipe on the seat and lid.

I tend to have stomach pain not quite frequently, but often enough, due to what I eat or drink, and I did mention this to Laura. She just said that I know my body, my baseline of how I generally feel, and if anything feels worse, or just not right, call them.

The oncology office had a direct line during normal office hours, so if I am concerned about something happening with these meds, a side effect that worries me, not feeling well, whatever associated with taking these chemo meds, I don’t have to go through the main call center, but I can reach Dr. Z’s office right away. This was a huge comfort. I mean, if you’re feeling ill, it’s no fun to wait on hold for a long time, or wait for call backs. Of course, if it’s after normal office hours, I still get the call center.

I had to have labs before starting the meds. Everything was within normal ranges except one kidney function test. However, considering I have only one kidney, that’s probably to be expected. If I don’t hear from anyone in the office today, I will start the meds tomorrow morning.

I will have a video appointment with nurse Laura a week from tomorrow, and then I have an in-person appointment with Dr. Z two weeks from tomorrow. It was a huge relief to know they are monitoring and following up so much, particularly during this first month. I will have to have labs again when the first month is over, and eventually CT scans and continued labs and follow up.

I meant to ask Laura about mental health support. I’ve been feeling fine, emotionally, since my venting last week. However, I expect there will be ups and downs ahead, particularly if the meds leave me feeling ill. It might be good to find online peer support or something. I’ll just have to see.

So, that’s the scoop. I start my chemo pills tomorrow. For better or for worse, Here I go.!

GETTING BETTER ALL THE TIME

14 Friday Jun 2024

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GETTING BETTER ALL THE TIME

June 14, 2024

Humming that song by the Beatles as I write. Amazing how a couple days can change my mood. It seems like venting as I did the other day helped me a whole bunch of help. I felt more positive the next day, and things are at least a little better for now.

I heard from the special pharmacy yesterday. They asked me a bunch of typical questions. I also asked if they participate in script talk, or if they could at least provide Braille labels. This med is too important to risk taking the wrong thing at the wrong time. The pharmacist said it could be done. They shipped the meds yesterday, overnight.

But early this afternoon, when I clicked on the tracking link in the email the pharmacy sent, I got the UPS site and a message saying no results. I was a wee bit freaked out, because my appointment with the “education nurse” is Monday morning, and I’m supposed to bring all three meds. But, presto, lo and behold, we checked for packages outside my door, and there they were! And in the bag with the box of meds was a very lovely Braille label! I haven’t put it on the med bottle yet; I’ll wait until the nurse sees it on Monday. But I feel jazzed just to have a damn Braille label for my very important medicine! Disappointed that the very large info packet isn’t in Braille. There’s still so much I don’t know, like what does this actually do. But I suppose at least a Braille label is something. Will we always live in a world, where something is better than nothing, but still can’t get accessibility for everything?

In other news, I ordered supposed “sun hats” from amazon. The weather is already so hot here, and if the cancer meds should cause me any fatigue, nausea, or other happy little problems, I don’t want the heat to add to it. I’m sensitive to heat. The info on the hats said they were made of straw. That’s what I wanted, a straw hat, a pretty straw hat, in a pretty color. I got the hats today, but if they’re made of straw, I shall, as the saying goes, eat them! Waaaaah. I want a straw hat! A pretty straw hat!! Lol.

Next update? Probably Monday after seeing the nurse. Will I be taking my first pill that day? I don’t know. They did say I’d have to have labs done before taking it, so not sure when this new adventure will begin.

I can’t guarantee future posts won’t be roller coaster style. I’m writing this journey, and I’ll be open with my thoughts and feelings, up or down.

Venting

12 Wednesday Jun 2024

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VENTING” FEARS AND DEPRESSION

June 12, 2024

I’ve only been able to eat a bowl of cereal in two days. I wake up crying in the night and can’t go back to sleep. I actually had the nerve to ask God “why are you doing this to me? Hasn’t lifelong juvenile arthritis with all that entails been enough?” I quickly apologized for that impertinence! But the point, the thought the terror remains. Why did this have to happen to me?

I know I seemed positive after my appointment on Monday, but I do tend to blow off the negative feelings in public. I also didn’t have the rest of the story. Yesterday, I got a terse note from someone at Dr. Z’s office, explaining next steps. One of the reasons I have to wait to get the meds is that they come through a mail order pharmacy. Once I hear from them, I am to call for an appointment with the “education nurse” at the oncologist office. In the meantime, Dr. Z prescribed two meds for me, and I am to bring those to the education appointment with me.

I went on to check out what notes Dr. z wrote about me in his after visit area of my appointment info online. He did say some very nice things about me, warm, positive, friendly, all very nice, and how I generally try to behave. But then I read these words when describing my cancer. “incurable, but treatable.” Incurable but treatable. This has set me on a tizzy of fear, anxiety, and nighttime insomnia and tears. He’d implied during the appointment that I’d be taking the cancer meds forever, but I guess I hadn’t really let that become reality. Truly, forever? Doesn’t this stuff go in to remission, ever? Do I have to take potentially deadly and expensive meds for the rest of my life? Having looked up info about cabometyx, and the fact that even before I’ve had one pill or even a breath of side effects, my oncologist is prescribing nausea and vomiting meds to combat those side effects, yell yeah, I’m in a tizzy. In a panic, frantic and seeing my future as a dim unhealthy life.

People will probably comment that I’m making too much of this or having ridiculous emotional reactions, but if you’ve never stood by in helpless agony, watching someone you love die bit by bit from cancer and the treatment for that cancer, you can’t understand the stark terror I feel right now. I don’t want that to be my life! I don’t want those who love me to have to stand by in helpless agony and watch me go through it, wishing with everything they have that they could just do *something* to ease things or make them go away. Until a person wears either variety of these shoes, having it, or loving someone who has it, you just can’t understand. That’s a good thing overall, because I would never wish that on another human being, ever.

I don’t know what to do about all these feelings, except to write them out, expel that tangled knots inside me through my words, words that in one way or another have been my way of dealing with the worst things. I have never been able to write about Dad’s cancer and ultimate death, but hopefully, I can write about mine. Yeah, Father’s day is coming up, and that may not help my frame of mind right now, but I think I’d feel all these things without that piled on top.

I’m afraid for my future, and I’ve never really felt that before. I’ve been hurt, broken-hearted, mourned losses to death and losses of romance or friends, but even with my juvenile arthritis, I’ve never felt lost and helpless about my physical well-being. My folks and my doctors taught me how to handle my arthritis from childhood, and my life’s goal has been that it will not beat me, that I will, as I say with gallows humor, will walk into my grave, on my own two feet. I can’t find that attitude about cancer, incurable but treatable cancer, not yet. I just find my brain, my feelings, whirling round and round in a never-ending circle of fear and worry. I wish my doctor had a better bedside manner and would have taken time to reassure me. I wish I wasn’t playing the waiting game again, just waiting to hear from some unknown pharmacy, and then be educated. I wish; I wish; I wish … so many, too many things.

I’m scared.

Treatment Plan

10 Monday Jun 2024

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TREATMENT PLAN

June 10, 2024

I have a treatment plan, but not yet the actual treatment. I would estimate that Dr. Z probably stayed with us about ten minutes this morning. But the rest of the explanations, warnings and instructions will come later.

The first thing we asked was for him to explain the results of the biopsy. My sister was correct in thinking it was about the markers that tell the difference between types of cancer, in my case, the difference between kidney and lung cancer. Mine is definitely still kidney cancer.

We discussed three treatment options, immunotherapy, targeted oral meds, and nothing. Dr. Z and I were 100 percent agreed on all three: no immunotherapy due to my JRA, no just sit and do nothing, try the oral meds. It was pretty cool, because he had this form on the computer where he’d enter my type of cancer, then the type of kidney cancer, my age, my health insurance and a bunch of other things. He did mention the name of the meds we’re going with before doing the form, and it was one that the form suggested. My insurance is medicare, and the top choice was one that the doc referred to as “not in favor” anymore. Not as effective as it should be. I told him to pick the one that would work for me. He also told me that there is financial aid for things like this. My sister looked up the med later and saw that medicare does cover it, but maybe it will not cover the whole cost. Not sure at this time. Side effects include mouth sores, fatigue, nausea, weakness, weight loss, and so forth. The ones he emphasized the most were the mouth sores and the fatigue. I remember Dad’s mouth sores, and how he drank ensure during the chemo days. Ensure, here we come!

I did not walk away with a prescription, or one called in to my pharmacy, waiting to deliver it to my door. The drug has to be compounded, made for me, and then it will be delivered to me in person. When it’s ready, a nurse practitioner will call me to go over all the info I need to know while taking this into my poor body. This is something I will continue to take from now to who knows when. I will continue to have regular CT scans and blood work to check the progress of the treatment, and of course what the meds are doing to my blood and all that fun stuff.

I haven’t looked up the drug myself yet, but I’m sure I will in the next day or two. The only thing we saw in terms of dietary restrictions were no grapefruit and no grapefruit juice. Not hard since I don’t eat or drink grapefruit! By the way, the drug is called Cabometyx. Isn’t that a hell of a name? Where do they come up with these? Couldn’t it be something cute like CANCER BE GONE? Lol.

So, until I hear from Ms. NP, or perhaps Mr. NP, I will be playing that hurry up and wait game again. Remember that game. Oh fun. And much as I hate answering my phone, I’ll be jumping to answer it for the next little while!