Mayo scans - Oct 2020

 Hello all! It’s been a while. I did not write up a post about my scan 3 months after radiation, but there wasn't much to update on at the time! I will bring you up to speed on that, and I just got home from my six-month scan and I heard a lot of info at that. 

We will start with the three month scan - my parents and I went down and stayed again at a hotel right across the road from the hospital to make it easy to run back and forth. I had an MRI and met w my neurosurgeon. I went into it hoping to see improvement since radiation, but unfortunately there wasn’t any change! The doctor wasn’t surprised though, he said it usually takes time to kick in. And if all looked good at my next scan in 3 months, we can start going six months between scans! Geeze, that seems long to me! Haha. It’s been years since I’ve gone that long between scans... And that actually seemed a little too far off for me, I like the peace of mind by having a scan. 

I did not have any lung scans that day because I had not gotten on the chemo. I was supposed to get set up w a chemo doc here in town, but with starting work and being around clients with the virus going on, I didn’t feel comfortable being on it. Having a lower immune system and being around the public didn’t mix well for me. It was a risk I was willing to take for the time being. I am not going to bring up much about the virus, but one thing that I see often, and does bother me - are the people who say "stay home if you are scared". First off, I can not stay home. I have kids and a house to run. I don't have the option of not working. Plus, I love my job and being in control of my own money.  I am not 'scared' of the virus, just doing my best to not get it. Most of the people that I know who have gotten it, have had a light case thankfully, but what if I ended up with the respiratory version? I don't think my lungs could fight it off.  I would hate to have fought cancer for so long and be taken out by this.  And I wish the world would be more respectful of the people that are in my situation. 

So, that brings us to now. To be honest, I struggled for weeks leading up to this appointment.  I reached out to my chemo doc and let him know that I was not on the chemo and my reasons for it. He wanted me to get a lung scan and meet with him also this time. Between the head and lungs I felt like a lot was up in the air and I didn’t know what kind of news I was about to hear. I’ve been extremely tired after a day of work -especially with lower back pain, I’ve had a light cough for weeks,  and sometimes a little shot of pain in my chest. I wasn’t sure if this was stress, or my lungs getting worse, etc. It doesn’t help that I’m either at work or home (or Twin Lakes when the weather was nice!). I am very much a homebody but I liked my time out with friends and/or traveling.  So it’s been hard to ‘escape’ my own mind. I have read ALOT of books, which is a great way to keep my mind busy!  I’d love to escape town, get an airbnb somewhere tropical, and sit in the sun w a book. Just to run away for a little bit...but I’m sure others are feeling the same way. There is so much negativity and complaining in the world right now too, which is really hard to see.. So I am doing my best to keep my mind calm in any way that I can. Some days I shut down and don’t talk to many people. I'm thankful to have my kids keeping me busy when I have them and of course my pup Nala who is by my side 24/7. Haha.

My friend Stacy came with me to this scan. It was great! We had warm weather, ate great food, relaxed, etc. Stace and I do a lot of trips together so it kinda felt like it was a fun trip and not just for scans. 

I had 7 appts total this time. (Scans, meetings with Docs, bloodwork) It was busy that’s for sure! But staying across from the hospital was great again. I’d run over for an appt, then we would go do something fun. I had a jaw scan this time too, I’ve been trying to get my jaw looked at for so many months and it’s finally happening!! At my appts 3 months ago, my neurosurgeon pulled some strings to get me in with the oral surgeon there.  I meet w the doctor in a week on a video call.  Fingers crossed he has some sort of solution for me! Although I can say, my jaw isn't as bad as it was a few months ago, but it definitely still needs something done to fix it. 

I met with my chemo doc, Dr Robinson, first. It had been 6 months since I've seen him so I was prepared to hear not the best news about my lungs. I think this is what has been stressing me out more then anything. And like I thought, the news wasn't great.  Areas have grown in my lungs and some new spots have shown up. The cough I have is most likely a side effect. If I were an older person, I’d probably be feeling more side effects then I do right now. And if I went another year without any meds, I most likely wouldn’t be in good health. 

The left is now (scan is a little bigger), the right is 6 months ago.

After seeing these scans, I surrendered to the chemo. I told him I am ready to get on it and of course he was happy to hear that. I was going to figure out a way to work less if I needed to, whatever had to be done to get on it.  But, the chemo I will be on, doesn’t attack your immune system as much as most others do, plus I’ll get a blood draw regularly to keep an eye on my levels. That gave me a peace of mind.  The goal of the chemo is to slow the growth. New meds are constantly coming out and hopefully this chemo will give me more time on earth and during that time a new med will be made that responds to my cancer.   Okay - so leaving his office we both felt good about our plan. I’m now just waiting for insurance and all that to work out so I can get on the med. 

My last appt was with my neurosurgeon, Dr Pollock. He pulled up my scans and reported that the tumors have shrunk! That was amazing to hear because I have never seen a scan or heard that anything has shrunk! And the radiation will keep shrinking it. So that was awesome to hear.

 But, there was some negative news at his appt.. the radiation has caused some brain swelling. They could go in to remove the tumors to help calm the swelling, but the reason we did radiation was so we didn’t need to do a surgery. I am starting with a steroid, a high dose then slowly lowering it, to hopefully calm the swelling down. Luckily I’ve had no headaches or seizures which can both be side effects to brain swelling. Steroids can have a lot of side effects too - such as, insomnia, jitters, no appetite, weight gain, etc. So far, its been okay though.  I get kind of foggy and jittery in the evening, but thankfully during the day has been fine. 

I am going back down in two months for another set of scans.  We will see how the lungs are doing on the chemo - if the growth has slowed.  And we will also check the brain swelling to see if it is going down from the steroids. This has all been a lot to process, any time I hear something positive, there seems to always be a negative. But I also feel like we have a handle on it all now and that feels good. We are trying to take control of each issue and hopefully over time the problems will be solved.  I am happy to be going back in two months. I like knowing they will be keeping a close eye on me and I'll be curious to see if we have made any progress yet.