THE PAST FEW MONTHS AND RADIATION - AUGUST 2023

Hi everyone! I’ve really slacked at keeping up on my blog.. mainly because I haven’t had any exciting news to tell. But here is an update for you! When I went back in January for the final scan while being on the trial med, it showed no improvement so I was going to be done with that. It was a huge relief because I was so unhealthy and feeling horrible on it. I couldn’t wait to start gaining weight and growing hair again! Our next step was to start an IV chemo that I could have done at our hospital here, one day every month. I had to get a port put in to receive this chemo, which I have had a port before, but that was nine years ago and we had it removed because it was no longer needed. By the time we got all the paperwork figured out, it was about six weeks after ending the trial that I got started on this.

I was worried about being on an IV chemo because the last time it was very hard on me and I did nothing but sleep that first week after receiving it to help pass the time of feeling so horrible. They said this chemo is easy on some people and others have side effects from it. So until we tried it, I wouldn’t know how it would be for me. I was there early one morning to get my port placed and then 2 days later I started the chemo. The first day everything went well, I had a few side effects as I got the med, like low blood pressure, fast heart rate, some shooting pain in my back; my body seemed to be fighting it. We had to slow down the speed that the chemo entered my body. So what should have been a few hour day, ended up being 8 hours! I didn’t mind being there though, I was in a comfy chair w a warm blanket and they order lunch for you. I had a book and my phone to keep me busy. I also napped if I could but every 20 minutes we had to take my blood pressure!

I was prepared to start feeling yucky the next day but the only thing I noticed was I was a bit more tired. And that continued the rest of the week but other than that, I had no side effects! What a relief! It felt like a break to be on this medication! We were trying something to slow the cancer but I didn’t have a pill to take daily or extra annoying side effects! 3 months after being on this med, I was back at Mayo to see if we had any positive news. I was praying it was because I had no issues with staying on this chemo for a long time! Unfortunatelyyyy, the spots in my lungs were still growing. My oncologist even said looking at my scans and then looking at me, told two different stories. The scan didn’t look good as the spots in my lungs are getting larger and taking over my lungs. But then looking at me, and listening to my lungs, you would never guess the scans looked like that. Although I was starting to feel more side effects from them growing. I got a cough in the beginning of January and it never went away. I still have it. I run out of breath very easy now. And I am very tired every day. The doc said we will give it two more months and then depending on the scans, we will either continue this chemo or be done with it.

During this time, we found out my dog Nala had bone cancer. It was in her back right leg, on her inner thigh near her knee. I guess bone cancer can be very painful and they recommended amputating her leg. I was in shock!! By amputating, it gets rid of the pain and gives her more time with us. Usually by the time you find the bone cancer, little cells are in the body and eventually get to the lungs. There was an option for chemo but it would have been over the summer, her favorite time of year, and it’d only add a couple more months to her life. So I decided against it. The crazy thing is - the chemo she would have been on, is the SAME chemo I was on. What are the chances?! She is doing great on 3 legs though. So now as I deal with the cancer in my lungs, we are waiting for it to reach Nala’s lungs…

This iv chemo I was on let me feel a bit more normal. I finally had a tan! For over 2 years I had been on meds that I’d burn in no time, but not get a tan at all. My hair was growing back which was very exciting. I wasn’t off the trial long before it started coming in. Unfortunately, on the trail I lost 20lbs. I was excited to be off it and gain back some weight but here we are, 8 months later, and I still haven’t gained any. My doctor said lots of factors go into it including my fast heart rate and low oxygen levels. My body is working harder to keep up. It’s frustrating to me because I feel that I look sickly and I don’t like that at all.

My son graduated high school in May and that had so many emotions come with it! I couldn’t believe he was old enough to graduate, I couldn’t believe I made it this long to see it happen! Once I knew I’d be constantly fighting this cancer and chances were good it would never go away, I really wanted to be here long enough to see my kids graduate. Get them off into their future and I could feel like they were set. I was so relieved to make it this far for Rease! My only worry now is I have 3 more years until Shaya graduates and with the way things are going now, I really don’t think my chance are good at being here that long... I’m so lucky I’ve made it 9 years since being diagnosed, but of course it’s never going to be long enough.

At the end of June I was back at Mayo for scans and to determine if I would stay on the iv chemo. Unfortunately the cancer was still growing and it was time to move on from this chemo. I hated this because it meant I’d probably be back on something that gave me shitty side effects. It took a while to get the paperwork/insurance all figured out, so I got to enjoy a couple months of summer on no meds. But I’m now on my third week of a new med, it’s a pill that I take daily. It’s a ‘sister med’ to one I’ve been on before and I already have some side effects kicking in. One of those being a sore mouth, and another is bone pain. I’ve dealt with bone/joint pain and swelling for a long time now but this is always at another level when it comes from a med.

There is a tumor behind my eye that we have been watching, but since it hasn’t been causing any issues, the doc didn’t want to put me through any radiation yet. (This is the radiation where they screw a frame to my head.) Shortly after leaving Mayo in June, I started having some little issues - a dark spot in my eye, especially at night when I’m tired. Then if I look to the right out of my eyes, when I moved my eyes to look straight again, the right eye gets stuck looking to the right for about a minute. And that’s when I get double vision. Early last week I noticed my right temple and eyeball was tender to touch. And a day or two later I woke to a very swollen eye. This lasted for 3 days straight. I messaged my Mayo neurologist and called my oncologist here. My doc here had me come in for a head CT to see how everything looked. The next morning I had a message from my Mayo doc who had looked at my scan results and said he would like me to come down later that week for radiation. I’m relieved they got me in so fast!

I am now home from getting the radiation. My Mom and I came down Wed evening, I had a couple appts Thursday and then Friday morning I had to be back to the hospital for 5:30am! They got me prepped- change of clothes, an IV put in, a calming med given. Then I was brought to a room where they put the titanium frame on. Having done this before, I knew what to expect. First I got numbing shots in my forehead and back of my head. And then the screws were put in place. The numbing med kicks in quick so by this point I feel mainly pressure w a little bit of pain and a weird crunching noise. After the frame was placed, I had a CT scan, MRI, and then went into radiation. I was very tired by this point and slept through it! When done they took the frame off and wrapped my head in gauze. I was free to go! In a couple months I’ll have a scan to see if any shrinking has started. Last time it took a few month for the tumor to respond to the radiation. The next day I was very swollen. The area where the screw was on my forehead swelled up Friday night and that swelling has moved down to my eyes and all around them. I'm hoping I am through the worst if it and each day the swelling starts to go down.

It’s been a hard year.. I’m feeling like I’m going down hill. Always waiting to feel better than I do but that doesn’t happen. Some days are worse than others, but I can’t say I have ‘great’ days anymore. Once in a while I’ll have a good day. Each day I’m exhausted and my body hurts. I don’t have the energy to do much of anything. If I work, I can’t wait to get home and rest. If I’m out doing something, which isn’t often, I need to be somewhere I can sit. I feel like I need to squeeze in all the fun things I want to do and see now, because as time goes on, I'm just going to get weaker and more sick. It’s frustrating, maddening and sad all at once. Why are these the cards I was dealt? It’s not fair. I look at old people and think how lucky they are to have lived such a long life. Or I look at my friends and siblings and think how much life and amazing moments they have ahead of them. I look at my kids and think about how much I’m going to miss out on. All the big moments they will go through without their Mom. I’m simply jealous of all the healthy people. I wish that could be me.