The hits keep coming and a new plan…

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 because I hadn’t eaten in awhile. It was determined while I was there that they would put a G tube in my stomach for feeding which will be more permanent and easier to deal with. That’s happening on Tuesday next week. With not being able to swallow, that means I have to spit all of the saliva I produce out because it won’t go down. So annoying! And also, my voice is the worst. It’s quiet and I have to use a lot of energy to talk.

We just spoke with Dr Low this morning to come up with the next plan. There are still options but they’re growing slimmer. It's frustrating that nothing has worked to this point. I just need one thing to work. One thing to shrink the tumors for some time. I don’t understand why we are all so different and why one treatment works on some but then not others. 

He gave us a couple of options. What we decided to go with for now is to continue the immunotherapy and add radiation in (to my esophagus and lung area I believe) there are some studies that show when you add radiation in on top of immunotherapy it can give it a kick start. I want to have faith and hope this will work but the percentage isn’t great. However Dr. Low feels like we should give it a try for a couple of months at least. He said we aren’t going to lose anything in 2 months time.  Then we will scan and if it is not helping at all we are going to move on to another chemo where I will lose my hair again and which has some worse side effects than the previous ones it sounds like. That doesn’t sound fun. 

I’ve been pretty weak and tired, probably just the cancer itself makes me feel like that as well as trying to get used to my new way of getting nutrition. I had to start slow to not upset my system. But am now at full capacity! And I think I’m feeling a little better each day.

The feeding tube was a huge learning curve and Brandon dealt with it solely the first couple of days.(he’s forever my rock) Then the fun really begins by crushing each medication I take, dissolving them in water and trying to find ones that come in liquid form, then syringing them 1 by 1 into the feeding tube. It’s such a process. And it wears me out! 

The silver linings:

Venturing out with this ugly feeding tube to cheer on Ruby at her dance recital and to watch Gabe’s first game of the season! Being pushed in a wheelchair, because…no energy! These are the moments I’m living for. 

Family dinner at my Brother’s house. Even though I couldn’t talk and was weak I loved being around my people. 

So so many sweet friends and family who are doing anything and everything they can think of to help and to brighten my days. Yummy meals and groceries to feed my family show up often.  In the friend and family department I am blessed beyond measure. One friend found an electric baby syringe you would use to suction their nose, only I use it to suction the saliva! I know…gross. But it’s brilliant and is saving my mouth and face from having to use a Kleenex every few minutes. It was such a thoughtful gesture! 

And finally…a little bit of heavenly sunshine this past week ☀️ 

Prayer requests: that my body will somehow in someway be able to accept one of these next couple of treatments we are going to try. That the cells will kick start and do their thing. 

That my family and my kids can stay positive and have the understanding they need for all we are going through.

How can we pray for you? 

Thank you for going on this journey with us! Love you all💜

-Jenny

p.s. my good friend sent me this this morning and I loved it.