Hi everyone! I’ve been slacking on updating my blog lately as I felt I didn’t have a lot to say. But I figured I owe you all an update and have some new news.
After my good chest scan last March where we heard that spots were shrinking, I continued to be very good about taking my chemo. I’d like to say that in the past 11 months I’ve only skipped a couple doses total.
My scans in June came back good, the head tumors were still shrinking from radiation and the chest scan was great also, the chemo was still shrinking the cancer in my lungs. This was great news because it felt like we had both areas under control for the first time!
I continued on the same dose of meds and in October my scans were so so. The head scans were still great. The lung scans, a few spots here and there had a tiny bit of growth. But we weren’t worried about it yet and that could even be the results of different people reading the scans.
We decided my scans in January would be done at home since we were only doing the lung scan this time around. We loved the idea of that, being we have no clue what kind of weather we could be dealing w in January! I was in and out of our hospital in ten minutes. Crazy how such a big production usually - driving 6hrs to Mayo and staying a few nights - could be so quick! A day or so later, my Portage portal had results on it and from what I could understand, they didn’t sound great. BUT, I also realized that they were comparing this scan to a scan I had done here in 2018 and of course the progression is a lot worse in my lungs now then it was back then. So I tried my best not to freak out and wait to hear from my Mayo docs. After a few weeks of waiting, I found out Mayo hadn’t received the scan pics yet, which could have been my fault. I might not have told Portage to send them, and just expected that they would. After getting all of that straightened out my Mayo oncologist, Dr Robinson, wanted to set up a zoom appt with me. So another week or so we waited. By this point, it’s been a month! I’m used to hearing results the same day! I tried my best to push it out of my mind but it was a bit of torture waiting.
The day finally came to talk w Doc Robinson and it was nice to see his face again! My last appt at Mayo, I saw his PA, not him. AND, this was the first time I saw him without a mask on. Haha. Its been almost 2 years and I saw his smile for the first time. Even though the scans at home were compared to an old one, I had a feeling I wasn’t gonna hear great news. And I was right, we had more growth this time around then we have had in a while… not every spot grew, but some grew more then others and there are a few new areas that popped up too. He did explain though that it is a little harder to base his judgment off these scans because the pictures are a little different then the ones done at Mayo. It’s a different brand machine which takes different picture slices.
He doesn’t want me to continue on this dose of chemo and let things get out of control so he would like me to double the dose. If you remember(and it’s okay if you don’t, haha), I was on this bigger dose back when I started on this chemo and it was very hard on me. Besides the symptoms that I still deal with - fatigue, swollen eye, extreme joint pain and swelling - my mouth hurt and I had a horrible rash on my legs. It was a lot harder for me to function on it. We are hoping though, that after being on this med for 16 months, my body has gotten used to it and I will be able to handle the bigger dose better. I will be starting this within the week. Really all I can do is cross my fingers and pray that it won’t be so bad this time around.
One side effect to this chemo is high blood pressure. So far I haven’t had an issue with that but lately I’ve noticed that it seems like my heart is beating harder at times. When I look down, my chest is moving a lot more then what I’m used to seeing. So Doc Robinson has me checking my blood pressure a couple times a day and record it. If it is 160/90 or higher consistently for 3 days, he wants me to reach out to him. So far it hasn’t been, but sometimes one of those two numbers will be higher then where he wants it to be. If needed, he will put me on a blood pressure med, but I’m hoping it doesn’t come down to that. I don’t like the idea of adding another med or side effects to my list! When I go back in April for my scans, I will be getting an echocardiogram too.
Over all, I’ve been doing okay. I did recently find a way to help control my sore joints. I take a pain med in the morning and then in the evening I take ibuprofen. I usually don’t like to take ibuprofen because it has blood thinners in it. They don’t want you to be on that if you are going to have a surgery. I don’t have any surgeries lined up, but you never know when I might need one. I bleed a lot after a surgery as it is, so I hate to take something that can make it even worse. But, it seems to be the key to controlling the swelling and joint pain, so for now, I’m going to take it! It makes a world of a difference for me because I honesty felt like I was 90yrs old. Every little move I made hurt.
The worst thing I’ve been dealing with the past few months is a tooth that I need pulled. After the 7 week radiation I had done in 2017 to my jaw area, I have had to have a couple molars pulled. Radiation is basically ’killing’ them. In October I started getting this severe nerve pain. It runs through my teeth - top and bottom - and in my cheek going up into my nose, eye area and side of my head. This happens many, many times a day. At first I thought it was just a new nerve issue, but why all of a sudden did this come on? Then one day it hit me - maybe I have a cavity? I don’t feel normal pain on the right side of my mouth, so maybe this nerve pain is the result of that? I went into my dentist and sure enough, I have another molar that needs to be pulled. Wonderful. He put me on a strong dose of antibiotics and referred me to the oral surgeon in Marquette that I have seen before. So I call to set up the appt - and keep in mind, this is the beginning of November - the receptionist says, “Sure, we can set up your consult for February 23.” ARE YOU KIDDING ME?!? That’s almost 4 months away! I’m on chemo, I shouldn’t be walking around with an infection for that long. I told my dentist’s assistant, and bless her heart, she called them back and explained my story. They said they will put me on their priority list and get me in as soon as possible. Well here I am, still waiting! It has been a nightmare. I’ve tried to get in to other oral surgeons, including mine at Mayo and have had zero luck. I feel my oral surgeon at Mayo would have got me in by now, but when I send a message in my portal, I’m in contact w his receptionists or nurse, and not him. And they just say we are booking out into March/ April. My orthodontist here has also helped me out by sending referrals but no luck with that either. I understand that oral surgeons have been so busy since Covid, but you’d think some would have exceptions for people in my situation.. Next week I finally have the consult, but who knows when the actual appointment will be! It’s just been very frustrating and another thing to add to my plate that is already full.
My sleep has been horrible for a few months now, I’m up almost every hour. Usually I can fall back to sleep easily but by 6am, I am over it and just get up! Here I am at 4:30am, writing this blog! Idk if it’s a result from the nerve pain that I’m waking or what is causing it. Sometimes my face hurts or my joint pain is so bad that I can’t get comfy again so it’s easier to get up and take my pain med. And then hope that I can fall back to sleep for a while after getting the kids off to school, before I go into work. Some days I don’t know how I function and push through. I only work 5 hour shifts but I’m starting to worry that that might be getting to be too much for my body to handle. I’m exhausted at the end of it most days and feel like I just worked 12 hours.
I’ve done a lot of complaining in this blog, but don’t get me wrong, things are also good! The kids are busy with their activities, it’s been fun watching Rease and his sports. Shay is looking like a teen more and more each day. It’s crazy how fast time flies. I feel lucky that I’ve been around this long to experience them growing up. Rease was 10 when I found out about my cancer and he will be 18 in October! In August we added a puppy named Rosie to our clan and she is so great! Super sweet and chill, and Nala loves having a partner. We have a few trips this Spring that we are looking forward to, and hoping it’ll help pass the rest of winter!
I think that wraps everything up! In April I will go back to Mayo for both scans and the echocardiogram. At that point I will have been on the larger dose of chemo for about 2 months. We are hoping I handle the chemo well and see some improvement on the chest scan!
