Team Jenny!

I’ve had a bit of a rough patch the last 1.5 months or so. I really don’t like it. I just want to feel good. A lot has happened. I’ll try to make it short! December 26 went in for bronchoscopy to put a stent in my airway as I was having trouble breathing and a scan showed tumors pressing on the area as well as tumors inside the airway. The doctor said my airway was about as wide a a coffee straw. That would explain why I was having breathing problems! I felt like I could breathe much better immediately after surgery and could clear the gunk stuck in there.  Had my first immunotherapy on December 31. Pretty uneventful, but I was so so thankful that I could get it started! I will have it every 3 weeks. I was still really struggling to feel better from the bronchoscopy, my cough was getting worse, breathing was harder again. They sent me for a chest X-ray and from there to the ER. They said it looked like I had fluid around the lungs and needed more checking. More tests in the ER and ...

  On November 1, we were told I would be starting Immunotherapy very soon to continue fighting these stupid tumors. Just needed to get the insurance to approve and we’d be good to go. Easier said than done! Our insurance didn’t play nicely (at first) they sent the 2nd denial letter to Dr Low just before Thanksgiving and it said “Final Notice” he  was very frustrated, just as we were. He normally has a chance with insurance companies to talk to a peer to plead his case. But they didn’t even offer that. They just said “FDA does not approve this treatment for that type of cancer” the trouble is that there aren’t many studies done for my type of cancer and probably never will be because it’s so rare. So what are we to do? We’ve been so upset over it for weeks now trying to figure out what to do. Once we found out they denied it, we applied to the drug company to see if they would provide it compassionately. We’ve been waiting and waiting on that and they keep saying “it’s still un...

 I’m glad this week is over! It was a 2 scan week this time and a doctor appt on Friday. As I’ve said before…I really hate these weeks. So much anxiety and worry.  I met with Dr Low yesterday. It’s funny how once I know the results and the plan that I feel better. Even though the results weren’t awesome…the tumors have grown and are spreading. That being said again, it’s a slow growing cancer. He didn’t seem too uptight about that. And I was pretty positive they were growing and spreading, I can feel some of the tumors just under my skin and can tell they’re getting bigger.  The chemo I’ve done up to this point has not been very effective. Which is so lame. It feels like a waste of time. But like my friend Anji said, it’s all good info, we now know that didn’t work so we move on to the next treatment and find something that does work. Almost like a science experiment! Only….it’s my life and I wish I didn’t have to experiment!  He would like to start me on immunothera...

 1 week ago this morning I finished 25 rounds of radiation. It was not bad at all. And for that I am grateful. I didn’t have any major side effects…yay! I’m so glad to not be driving to the hospital every morning anymore though, that’s for sure! I tell you, the radiation team and staff at the IMC radiation oncology office are fabulous. The kindest people. Everyday they would turn up my music and get me a warm blanket❤️on the last day Brandon and Gracie came with me to see me “bang the gong” to signify I was done with that round. Fighting cancer is such a long road. I’m glad they let us bang the gong or ring the bell after a treatment plan is done! It’s not just for those that have been deemed cancer free anymore. We celebrate the small accomplishments too. I got to bring my mask home and it is currently sitting on my mantle! But I think I’ll move it. It’s just a stark reminder of my reality and sometimes I just want to forget about it all. I will have a scan of my spinal cord in a ...

Today I completed 5 out of 25 radiation treatments for the tumor in my spinal cord. 20 more to go! So far, so good. I’m not feeling any side effects from it yet. Dr Grant, my radiation doctor said I probably won’t feel them til closer to the end of treatments. I’m praying they’re minor🙏 I go in every morning for a VERY short treatment. My team is adorable, they always ask what I want to listen to. I usually barely make it through 2 songs before they come in to take my mask off and lower the table. It’s less than 10 minutes. Sometimes it seems silly to drive that far for a 10 minute treatment…but it’s worth it if it prolongs my life for sure. You can’t see the radiation going in, or feel anything at all. The table is very hard and the mask was made just for me, it’s pretty hard too and not very comfortable. They put pins in the sides of it so that I can’t move my head or neck. Then they lock my shoulders in so they can’t move either. I’m super glad it’s a short treatment! The reason it...

 It’s crazy to think that a week ago today I was on cloud 9. Things looked stable and I was ready to go live my best life. Today I’m not on a cloud…I’m maybe under a gray cloud? Things will get better…I just need to process.  Update: I had an MRI done on the spot on my neck on Tuesday. What my Dr thought was 99% going to be fine was not😢 it is indeed a tumor on my spinal cord. Not a good place for a tumor. I’m going to have to do radiation on it to try and shrink it. I’ll start later in August after a family trip (which I’m so grateful they’re allowing me to take) and I’ll be going every day to have radiation for 5 straight weeks. Yikes. I’m not having any symptoms of like numbness or anything so that’s good. Hopefully we caught it small enough to be able to have it shrink a little and keep it at bay. Because it’s now on my spinal cord they want to do an MRI of my brain next week. I’m sure praying it hasn’t spread there. I’m so sick of scans and blood draws I could puke....