March 2021 Scans - Surprising news!!

 

Hi! I just got back from Mayo last week. This appointment  was just for my lungs. I had been on the small dose of chemo for 2 months, and my Doc wanted to see how things were going being on a smaller dose then what his patients are usually on. I did feel a lot better on this amount of chemo. I still had fatigue, swelling around my ‘bad’ eye,  joint pain here and there and white hair! The hair is weird, but luckily it’s an easy fix for me to do and no pain involved! I definitely felt this dose is much more “livable” then what I was on before. And I’d like to report that I did not miss a single dose! In the past, it’s been hard to take it every day while feeling like crap. 

My beautiful white roots. Haha.
 (And some other areas of white
I missed coloring previously!) 

My sweet Mother and I went down Monday. I do need to give her a shout out because the last few trips she has done all the driving! And I appreciate that so so much!  We had great weather, high 50’s and 60’s! We did a little shopping and eating, and then spent the night in our room. Being just the lungs, I had a CT Tuesday morning, then bloodwork and after that I met w my chemo doc and headed home! So it was a very quick trip!

The CT and bloodwork went smooth and fast. I think this was the first time I didn’t have an MRI or have to put a gown on in years.  After the CT we had a delicious breakfast in our hotel before walking back over to meet with Dr Robinson. 

Just as a reminder - our goal with the chemo is to slow or stop the growth in my lungs. The last appointment  I had only been on the chemo for a month due to the side effects being bad and had a bit of growth in some areas. 

We didn’t wait very long before Dr Robinson walked in. First thing he says is, “I’m going to sanitize my hands and give you a high five! Because your scans looked awesome!”  I’m thinking, what! Very happy they look awesome but what does he mean by that?! Next thing he says is, “Majority of the spots are SHRINKING!!”  I couldn’t believe it! I told him that I didn’t even know that was an option! Turns out only 4% of people on this chemo see shrinkage.  And I can’t believe I’m in that 4! And only on the small dose! He was just as surprised as I was to hear this news. May will be 7 years since all of this began and NOT ONCE have I heard chemo is shrinking anything! And I have been on so many different types of chemo, that I’ve lost count. 

The left is before - see the ‘snowman’?
All of the circles are touching.
And the right - smaller and not all touching! 

So as of now, radiation is (hopefully) still shrinking the spots in my head, and the chemo is shrinking the spots in my lungs. Usually one area may be good but I’m still worried about the other. I’ve never had a time where both areas are in control. It’s such a nice feeling!!! I have a different mindset looking at my chemo now then ever before. Usually it makes me feel miserable and nothing positive comes of it. But now, I think it’s this magic pill that’s doing what it’s supposed to do and helping me stay here on earth longer! ❤️ 

Mayo January 2021

 Hello all! My Mom and I recently got back from Mayo. We lucked out and had great weather. You never know what it’s going to be like in January! We went down on Monday since my first appt was early Tuesday morning. Minnesota restaurants are only doing take-out right now too, so we grabbed food from one of my fav restaurants and hung out in our room that night. 

The next morning we got ready for a day of appts. I had 4 that day! The first was my chest CT. That is always quick and easy! In and out in a matter of minutes. 

 

Next we met with the oral surgeon about my jaw. This appt I had been trying to get for MANY months!!  I did have a video call with the doctor a couple months ago and that went super well! He is just a little older then me, very friendly and funny. I had a CT done of my jaw when I was at Mayo in October. He told me that there are a lot of issues with my jaw, like arthritis and bone on bone areas. Some due to radiation and some because my jaw is so uneven due to prior surgeries. The Doc said he had a few options for me, starting with a steroid shot. The other options, like a prosthetic joint, involved surgery so we will start with the easiest. So at this appt with him, I got the shot! I was a bit nervous for the shot because the hurting jaw is on my ‘good’ side, which meant I would feel this little procedure. I did feel it going in but that part wasn’t too bad. It was more uncomfortable as he injected the liquid. But, it didn’t take very long and before I knew it, it was over. I should be able to notice if it’s going to help with the pain in the next few weeks. Fingers crossed! 

After that, we grabbed some breakfast from the hospital cafeteria to kill some time before meeting with Dr Robinson to go over the lung scan and talk chemo.  Once we are with him, he told us the lungs are stable. Some spots have grown a tiny bit, but he was happy with what he saw. Especially with only being on the chemo for one month. (I was told to stop the chemo after I sent in a picture of a rash I had on my legs.) I told him I hoped to do a week on, week off with the chemo. The side effects just kept piling up when I was on them daily and I wanted to try and avoid that this time around. But, he doesn’t like doing that. It’s like pushing the gas, then hitting the breaks, pushing the gas, then breaks. He prefers a slow but steady pace. So we are going to try a smaller dose, half of what I was on, daily.  I am really hoping that I have less side effects on the smaller dose, but we won’t know that until I’m on it for some time. I have been on them for a little over a week now and so far I just have joint pain. I'm really hoping it doesn't get any worse then this but we will see.

Finally we made it to my last appt of the day, the brain MRI. I was tired by this point and ready for a nap! I ended up waiting about an hr to go in, but once in, it was over before I knew it. And barely got my nap in! Haha 

That evening we did a little shopping and ate some more great food in our room! The whole trip down we were planning out our meals! Haha, that's as exciting as things get these days. 

The next morning was our final appt with Dr Pollock to go over the MRI. For 6 weeks I was on a steroid to calm some swelling I had in my brain from the radiation. It was a struggle being on the steroid! I wasn’t sleeping, I constantly had the jitters, I was bloated, full of zits. Lots of side effects! Especially being on the chemo and steroids. So I really hoped the scan news made it worth it! I was also curious to hear if the radiation was still shrinking the tumors. First he told us, the scans looked good! The tumors were still shrinking. That was so great to hear! And then he said the swelling was significantly better too! Thank you Lord! I was relieved to hear this news. The steroids did their job. 

The left is now, going to the right is Oct

 and the last is the scan right before radiation.

Dr Pollock said he was fine seeing me in 3-6 months. He would plan our appts whenever Dr Robinson wanted me back for scans. I have a video appt with Doctor Robinson in a month and since getting home from Mayo, my next appts were set up with him for in two months. I am guessing Dr Pollock will wait to see me the time after that but I will of course double check with him. 

Overall it was a good set of appts. We know this chemo isn’t going to shrink the spots on my lungs, the goal is to stop them from growing. So the only thing I could have heard that was any better is no growth in my lungs. And we were pretty close to hearing that so we will take this as a win. 

It was a hard 3 months for me. I felt like my options were crappy - be on the chemo and feel horrible but possibly live longer because of it, or don’t take the chemo and feel good but possibly live shorter. I’m hoping that this round is easier since I won’t be on the steroids and my chemo dose is smaller. Wish me luck!