A Rough Patch

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 they admitted me to the hospital with pneumonia and they wanted to do another bronchoscopy to see if there had been complications. I started antibiotics and the 2nd bronchoscopy happened on January 5. The stent had slipped some and they decided to widen the area with a balloon and put a bigger stent in. I could tell after that it helped! Since then I still have a cough, but it’s nothing like it was before. I was glad to come home…I was there at the IMC for 3 days. 

I came home on oxygen and haven’t been able to go off of it yet. I think maybe a combination of pneumonia, and having cancer surrounding my left lung and the anirway issue too. I’m thankful for it but I double hate being tethered to it and having to worry about taking it everywhere I go.

I would say the last month and a half has been the hardest time mentally for me so far on this journey. I just don’t feel good. And I am not a patient person. Most days I don’t have much energy. I can’t walk far without getting pretty tired. The fatigue has been real. Somedays I feel a little better and can go out and run an errand or something. But then I come home and crash. It’s an out of body experience. I just want the old me back. I hate being waited on and relying on Brandon to do so so much for me. (Even though he is still a rock star and never complains) I get stuck on the “what ifs” and go to all of the dark places. Feeling crappy makes all of those things worse I think and I break down often.

My doctors gave me the go ahead to go on our family trip to Maui, which I did! It looked a whole lot different than other trips there,  but everyone kept telling me that I could feel ick here in Utah or take my oxygen and go feel ick on the beach. A few days before I went I got a blood transfusion to help my energy since my levels were low. It definitely helped! Very grateful for that blood. 

 It was quite and undertaking to travel and having to rent a ridiculously expensive oxygen concentrator that the airline would approve with 14 extra batteries. I rode in wheelchairs through the airport and got the special treatment like going through the handicapped security line and getting on the plane first. (Believe me I would trade all of those things to do it the way most people do it though) My family was so so helpful. Gabe carried all of those heavy batteries through the airports for me and handed me new ones when I needed them. Ruby pushed me a lot of the time and Brandon and Gracie filled in the gaps. I’m so glad I went, even though I felt crummy a lot of the time. It was beautiful and healing to be in the sun and sand and to get into the ocean just for a few minutes without my oxygen on. I loved being with my extended family laughing and talking. It made me feel a little bit normal. And I felt my mama there with us. It’s a special place to our family, so I know she’ll always be there with us. 

Now we are back to the freezing cold. 🥶 yuck! And I’m back to feeling very low energy. Maybe I need more blood? My next immunotherapy will be Tuesday of this week. And I will have regular bronchoscopys to check how things are with the stent and tumors. 

My sincere prayer requests:

1. That the immunotherapy will WORK! It will take time to show results, but the bottom line is we need these tumors (especially around my left lung) to shrink and be stable. Truly my doctor says that’s what is making me feel so crummy.

2. That I can be patient as my body fights. And that maybe I can have a few good days sprinkled in! 

The silver linings:

1. The amazing neighbors and friends that have brought delicious food for my family.

2. My adorable neighbor who takes Hani for a walk several times a week.

3. My cute friends who brought me lunch and then insisted on taking down Christmas. 

4. My brain scan from 2 weeks ago showed that the tumors in my brain have not grown much at all. We are so happy about that!

Even in hard times I know I am so so blessed. God is so good.

Sure love you all, we feel your prayers and are so in awe of them. 

Jenny