I had my brain MRI yesterday and my PET-CT today. Brain is clear and my cancer is still stable!! Whoot, whoot!!
The Tik-Tok platform: yes, I’m old, but I’m addicted to that app. I don’t know what I’m going to do with it when it comes to me, but I’ll try to make it fun.
I’m a little tired and not really feeling like writing tonight. I just wanted to put my good news out there.
I will officially be stable for 2 years next month!!
Anxiety!! As far back as I can remember, I’ve been plagued with anxiety. Anxiety over schoolwork, getting to school on time, making sure my friends were happy. And those were from when I was a kid.
Anxiety from when I was a teen: worried I’d never have a boyfriend, worried about getting caught at a party, worrying I wouldn’t have a ride home, worried about dying in a car accident, worried about passing my classes, worried about what the he’ll I was going to do after I graduated.
Anxiety now: wondering what everybody wants to eat, trying to find gifts for holidays, not having money because my husband still doesn’t have a job, worried about my parents who have no money and have health problems and the live 1800 miles away, my brother still being homeless living with us 4 years later, my husband and brother not all liking each other, my brother being an asshole manipulator with bipolar and possibly schizophrenic, my pup who had a vestibular disease episode a month ago, my pup getting to where he may have to be put down, always worried if everyone is happy.
It’s getting old…I’m getting old quicker. One thing I don’t worry about much is my cancer. It’s there, like my leg…it’s constant, like my heartbeat, but I don’t worry about it.
I am on anti-anxiety medications and I just had the dosage increased. Oh, how I’d like to have Ativan or Xanax, but I like them, maybe too much.
This post probably makes no sense, but I’m doing more of a data dump because my anxiety is so bad today, I want to run out of my house and disappear.
My baby boy, Mickey, had a vestibular episode. It was downright scary. His symptoms were walking/falling like he was drunk, leaning up against walls, walking in circles and he had nystagmus (eyes were rapidly flicking from side to side). I thought he was done. I took him to the vet and he was hospitalized for 3 days. I brought him home and he continues to get better. He was on Meclazine (people version is Bonine for sea sickness). I’m happy he’s home and he truly is getting better; however, his other problem, laryngeal paralysis is getting worse. I’m not ready to let him go.
I also received my 1st Covid shot…I got the Pfizer. I was happy I could choose. I wanted Pfizer, as their targeted therapy is currently keeping me alive. I’m not 100% sure I had side effects because the same day I had the vaccine, I had dental surgery under anesthesia. I was tired and grumpy for a few days.. I get my 2nd on March 30th. I can’t wait for this to be over.. I’m done with it..
My mom is having a health problem. They believe she has temporal arteritis. They put her on 80mg of Prednisone. She is not doing well on that much steroid. The problem is where she lives in Florida, there doctors aren’t the best. It’s taken her a month to get in to see a rheumatologist. I told my dad to take her to the Mayo clinic, but they are worried about insurance covering it.
I want to go see them, but Covid. In order to fly, you have to have a negative test within 3 days of flying. That’s not all that easy to do.
My husband is still having a hard time finding a job. He’s putting applications in every other day. I’m depressed and incredibly worried about this.
Well, that’s about all o have for now. I do have my next PET scan and MRI in Aptil, so I’m sure I’ll post those results here.
Hope everyone is doing well and thank you for reading.❤❤❤
Yes, yes, yes!!! 19 months stable!! Woo-hoo! I am very thrilled with this news. My targeted therapy is still working. Thank you Pfizer! Thank you insurance for approving and paying for it.
I had a couple of friends from my Facebook support group passed away recently. Some were years out from their diagnosis and they didn’t pass from Covid. They passed from their cancer. It’s incredibly sad how some live and some die. Makes me count my blessings and pray harder for those suffering.
I feel like I have a lot to write about, but honestly not feeling like typing it out. Hopefully, I will be inspired later.
Thank you for reading and I’m keeping you in my thoughts.❤❤
I do hope everyone had a great holiday season (whatever you celebrate or even if you don’t celebrate anything). Mine was so-so. I just wasn’t feeling it.
First: my husband still doesn’t have a job and his unemployment ran out and so, for the 2nd year, no gifts for each other. Not that gifts are everything, but it does add some fun.
Second: we always wait until the last minute to get a tree and have never had a problem before. Well, we did this year. We drove 2 hours away to places that might have had precut trees only to find out they didn’t. Finally, we found a place 15 minutes away that had some. They were 10′ tall and extremely skinny. They really lacked that branch fullness. You can see the tree in the picture above. I just keep saying that even Charlie Brown trees need love too.
Third: although I’m happy to be alive on my 3rd Christmas since diagnosis, I’m anxious. I have been stable for a little over a year and a half and I really just want it to go away. I have a new PET scan in January.
I am sad to say that I am happy Christmas is over. Yeah, I need an attitude adjustment. Hopefully, these winter blahs will go away soon.
Today is both my birthday and my cancerversary.
I’m 49 years old today. I’m spending this weekend in Wellsboro, Pennsylvania. I love this place. It is the epitome of a Hallmark Christmas movie. Its Main Street has older buildings and gas lights. Right now, they have 2 feet of snow. It’s just beautiful and I don’t normally like snow. The people are nice. You’re in the mountains, so there’s a lot of outdoor activities to do and animals to see. I very much could see myself living here. If you ever get the chance, visit Wellsboro.
Cancerversary…2 years since diagnosis…2 damned years. In January of 2019, I thought for sure I was dead in 6 months. By the way things were going downhill, I probably should have been. But, I didn’t. Science, and maybe a huge helping of hope, has allowed me this extra time. It’s time lived well…I have no side effects.
I live with the thought that I am so damned lucky. I have friends that have had Stage 4 NSCLC and haven’t lasted 6 months past diagnosis. I’ve never thought “why me”, but I always think “why not me?” I’ll never really have an answer to that.
My Facebook is filled with well wishes and love…my real life is filled with pure love from family, and that makes for a great day. I hope everyone is having a great day.
Thank you for reading! Honestly, I hope my vocabulary improves, as well as my storytelling. I am not one that writes a draft…I just write what I think. So bear with me-its going to get better🤪
So I did all of my Lung Cancer Awareness posts on Facebook. I meant to copy them over here, but I didn’t. However, if you’re interested, I’m Amy Grove on Facebook. You can follow me there, if you want to.
My parents came up the week of Halloween. It was nice, but there was some issue between my brother and my parents. It has been like that for years, so it’s no surprise. I had asked the lot of them to not argue, but they did. I almost grabbed my husband and went to a hotel. They worked it out. I made the mistake of not taking any pictures…where is my head??
On the job front for my husband: I guess no one wants a middle aged IT Project Manager who’s been out of work for a year. His unemployment ended. I’m on SSDI. We are rapidly going through our 401K. I believe he’s just going to get a much lower pay job so it doesn’t continure to look bad on his resume. Right now, I’m more bothered, upset, anxious about this, then the lung cancer.
Lung cancer update: still doing well on Crizotinib. Blood tests look great. I think my oncologist is bored with me…lol! He seemed to get a little excited when I said I had a pain in my foot. Now, this pain could be because I’m walking a lot more and not a cancer thing. He wants me to get an x-ray in case. Rather catch it now.
I hope everyone had a great Halloween and Thanksgiving (if you celebrated). We had a total of 12 kids come to our house. I totally “safed” it up too. I had all the candy in separate bags, laying separated on the table and I had hand sanitizer out there. I was disappointed I only had that many.
Thanksgiving was just those in our household. Me, my husband, my brother and our two pups. It was quiet. Little secret: I cooked the damned plastic giblet bag in the turkey. I don’t know where my head was. I pulled the neck out, but forgot the rest. This was not my first Thanksgiving. I have to laugh about it though. We still ate the turkey. It was pretty good.
Well, there’s my update. I certainly hope I have more things to talk about soon. My life is a tad boring at this time. I suppose that’s a good thing🤪
Hope you all are doing well and thank you for reading!!💕
My Mickey update: he has acid reflux. So, now he just takes 6 Pepcid a day and hopefully we will see less and less coughing. I had readied myself for the worse. I had it in my worried mind that he had lung cancer or congestive heart failure. I have more time with him…woohoo!
Excuse the goober in his eye. He was born with chronic dry eye. That has basically been the only health issue he’s had. My vet calls him a unicorn because he’s never had ear issues (which apparently is surprising for a lab).
Thank you for reading and hope you’re all well❤️❤️❤️
So, I had my brain MRI this past Tuesday and the results are: no abnormalities found.
I had my PET scan yesterday (Thursday) and the results are: still stable.
I am incredibly happy. I am 17 months stable on Crizotinib. I hope it continues it’s magic!!
So, after hearing the results, I did a thing. I rode my mountain bike 5 miles. I thought I was going to die. My hip didn’t hurt at all, but my endurance sucks. My heart rate was way too high during the ride. Here’s the thing, since diagnosis, I have not really done any exercise.
Before diagnosis, I weighed 140#, I rode my bike over 100miles a week and I took two exercise classes a week. I also was careful about what I ate. The first quarter after diagnosis, I weighed 119# (Keytruda did NOT like me at all). Since being on Crizotinib since April, I now weigh 175#. I can not believe it. I realize that I need to stop eating all that I’m eating and get exercising more. I’m quite embarrassed.
That’s all the news I have for now. Hope everyone is doing well♥️♥️
I posted this on my Facebook group as well, so someone might be seeing this twice. I just want to put this where I can get to it quickly.
So, for the past two weeks, I’ve had some pain along with a bump inside my nose. I’ve had pimples inside my nose before; however, they usually resolved in 2-3 days. This one has been lasting 2 weeks, which made me look up the symptoms which brought me to this. It doesn’t specifically say “Crizotinib’, so I’m assuming that this could possibly be a side effect of it. I’m going to give it another few days before I call my PCP. Just found this interesting.
Has anyone had Nasal Vestibulitis?
https://link.springer.com/article/10.1007/s00520-014-2580-x#auth-Mini-Kamboj
