Monthly Archives: June 2024

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.

treatment days 4-7

24 Monday Jun 2024

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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.

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!