Posts

She fought the good fight!

Image
 Hello everyone, Brandon here, Jenny’s husband.  Our dear friend passed away on Monday. I keep thinking the tears will stop, but they’ve come again as I’m writing this. When we ask some of our friends how they’re doing they respond with, “Livin’ the dream”. Our response to that question has been, “We’re fighting the good fight!”  It just seems more accurate.😁  And boy did she fight the good fight!  She fought good because she is good. I’ve never met anyone more brave. In the circles we run in Jenny is the best of us. Her purity is beyond reproach, but never in your face. She loved without judgement, but still held to what she knew was true. She was so fun without making fun of anyone. It’s only been six days, but I already miss her so much that I can barely breathe. As I write that I can actually hear her telling me to “suck it up!”  So the kids and I and all of us will actually do that, right?  Well suck it up and move forward with faith like she wou...

The hits keep coming and a new plan…

Image
How is it even possible that last Monday night I was eating possibly one of the best steaks of my life at Ruth’s Chris with Brandon for our 30th anniversary? And 2 days later I was in the ER where scans showed that my esophagus had closed off due to tumors pressing on it making it so I couldn’t swallow anything anymore 🙁I was so hopeful that they could put a stent in there to open it back up, but found out that is not a very promising option and has problems that come with it. I was admitted for a few days so they could figure out what to do with me. At that point I was so sad because 1. I realized the immunotherapy that we fought so hard for and was going to be the miracle most likely wasn’t working due to the growth around the esophagus. And 2. I’m really grieving the fact that I may never eat or drink by mouth again. That’s a huge loss for someone that likes food!  I had an NJ tube placed down my nose while in the hospital for nourishment. I was so hungry and growing weaker bec...

A Rough Patch

Image
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 ...

A Christmas Miracle!

Image
  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...

Next Steps…

Image
 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...

Radiation ✅ and what’s next…

Image
 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 ...

My cool new mask!

Image
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...