Team Jenny!

 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...

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...

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....

 Got some good news today! After a scan this past week we met with Dr. Low this afternoon to go over results. He said those amazing words “everything looks stable” and as I’ve said before. Stable is a pretty good place to be! There are still tumors, I still have cancer, but it’s just hanging out in there for now and not growing or spreading.  The last scan I had was maybe in February? That was the time that there were two naughty tumors that needed radiation. The scans showed that those had both shrunk (ever so slightly, but still…they shrunk!) after radiation I did a couple more rounds of oral chemo.  I’ve been a wreck a lot of this week anticipating this appointment today. I just hate waiting for results so badly. And always fear the worst. I know so many were praying for me this week and I thank you from the bottom of my heart. I can always feel the prayers and good vibes and my anxiety seems a tad bit less:)  There is one teeny tiny hiccup. There was a new spot o...

Today is my 49th bday. I’m thankful for the year I’ve had and all the living I could experience. I’m thinking of and missing my mom extra today and so grateful that she brought me into this world. Love you mama 💕It’s a beautiful life….and also kind of sucky sometimes. Things with my health have felt like a rollercoaster lately. My last post talked about when I rang the bell to mark my last radiation treatment. After a short break, I started oral chemo again and got 1 round in (each round lasts for 2 weeks then I take a 2 week break, then go again.) over Memorial Day weekend we had a trip planned to Alabama and Georgia to visit Brandon’s parents who are on a church mission there. Prior to leaving I noticed I was getting many more bruises than normal. (Since I’m on blood thinner, I bruise easy…but these were next level…dark, all over my legs and arms) my doc wasn’t concerned when I called about it. We chalked it up to the warmer weather and me being more active in the yard. We went on o...

After 5 rounds of radiation I got to hit the gong to celebrate being done! That was about 2.5 weeks ago. My goodness my radiation team was awesome. Such kind people who met me with a smile each of the 5 mornings I showed up. They brought me a warm blanket and let me listen to whatever I wanted to! My favorite thing I listened to was Beatles radio. Although it was a little hard because I wanted to keep the beat with my hand or foot and I had to hold perfectly still! (Also why does every part of your body itch when you’re told you can’t move?!) They radiated 2 spots with each treatment that took about 15 minutes each. It really wasn’t too bad. The effects were fairly minimal. Mostly I felt sluggish and tired.  Dr Grant, my radiation doctor explained that because my tumors are slow growing (thankfully) that they take longer to shrink or go away because the cells are also dividing slowly. Makes a lot of sense. So that means we won’t scan or check progress for a couple of months because...

I met with my new doc today, Dr Grant who will be doing my radiation treatment. He seems like a great doctor. He had ordered an MRI that I had done earlier this week. He wanted to see if he could see anything that the PT scan may have missed last week. The MRI was just of my abdomen area. And he did find something! A really small tumor that is sitting right on a nerve next to my spine. That would explain the discomfort and the strange feeling I’ve been having in that area. He said he was confident that the radiation would take care of that tumor and help with the discomfort. I’m so relieved! It’s been more painful and nagging this week. I will start radiation on April 1st and go every other week day for 5 treatments at the cancer center at IMC. They will also radiate the tumor on my adrenal gland. Praying for good results and praying that the radiation doesn’t harm other nearby organs too much. This is always the risk with cancer treatments I guess. The side effects should be minimal🙏...

 “Here comes the sun…and I say, it’s alright.” -The Beatles- I love it when things start growing in my flowerbeds. It reminds me that warmer days are ahead. A couple of cute little wild pansies have emerged and it makes me so happy.  This past week was scan week and meeting with my doc to see how the oral chemo treatment has been working. I’m always so glad when that week is behind me. As I’ve said before I am usually a complete anxious mess. This time there was a calmness though. I didn’t feel the crippling anxiety that I normally feel. I was so thankful for that. I don’t know what the difference was. Maybe I’m just getting more used to weeks like these and realizing they are my reality for the rest of my life.  The best thing that Dr Low said yesterday was: “  Last year at diagnosis If you’d asked me what I would’ve liked to see on a scan a year later, this is exactly what I would’ve hoped to see!” That was comforting. Most all of the tumors are stable! The oral ch...

 It’s been awhile. Life moves so fast. Hawaii was a little slice of heaven. We were there during a week where it snowed buckets in Utah…making it all the better to be in paradise! The weather was perfect. The sea and the sand…just what the doctor ordered. We all struggled without our wife, mom and grandma. Everything just feels a little hollow without her. I missed her lounging by the poolside with a book and on the beach watching her grandkids and kids play. I missed her counting heads and keeping track of where everyone was. (What a worry wart!) Hawaii will never be the same without her. It’s a tradition our family has had most of my life and I missed her like crazy. I did feel her near. I know she wished she could be with us. At Waimea beach there was a butterfly that would swoop down above our heads while we were swimming and then fly to the beach hovering over the rest of the family and then back again. I watched it all afternoon. Maybe it was her? I believe it was. Thanks for...

  Hello friends! I’ve been out of the hospital for just over 2 weeks now. It’s so good to be home! I’m feeling so much better. Not quite back to normal, but close. I’ve been so thankful to be able to Christmas shop and do some “normal” things. A few weeks ago it felt like I would never feel normal again. The human body is amazing isn’t it? How it heals and gets back to “normal” or whatever normal means for me now with my situation.  Today we met with Dr. Low to discuss the “new” plan moving forward. The amazing Brandon always records the appointments so we can go back and listen if we can’t remember what he said. He transcribed part of our appointment today that I wanted to share. It explains what went so horribly wrong and landed me in the hospital for 12 days. It also explains the specialized blood test they did to check on the enzyme involved. He also said this happens in about 1% of people. I guess I’m just lucky that way!  Quoting Dr. Low: “You got a super-normal dos...

 Oh my goodness. I’ve never been so sick in my entire life. I started the oral chemo on November 5 and ended on November 18. I started feeling crummy about the 16th. Things got progressively worse from there. Had a few ER visits and a home health nurse giving me fluids throughout that week. When I look at the possible side effects from the drug I’m pretty sure I felt most of them. Plus some of the rare, more serious ones. I have been in bed since the 17th now. Not functioning, so completely miserable. On Saturday the home health nurse came to give fluids. He found that I had a fever, high heart rate and low oxygen. He instructed us to head to the ER. When we got there they stepped right into action. They don’t mess around with chemo patients who have these issues. It was kind of worrisome to me but I was grateful. From there, they did a chest X-ray which showed blood clots on my lungs.(common for cancer, but not associated with chemo) this was an automatic admission to the hospital...

  If you’ve ever wondered what oral chemo pills look like…here they are. Just like a regular pill, but poisonous! There are instructions and warnings saying that anyone besides me who is administering them should wear gloves. And wash their hands. Makes me feel good to then swallow those down! But again, I’m thankful for modern medicine. And the chance to fight. We are praying that these little pills do their job, which is to stop the growth of the tumors and if it be God’s will to even shrink them possibly. Some of them just under my skin are a bit painful. I hate that! Also that I don’t get too incredibly sick. There are some strange side effects with these, different than the IV chemo. But overall they are less intensive and they find good success with using them for NET’s (neuroendocrine tumors)  we welcome all prayers and good vibes! I started the pills this morning and will finish this round in 14 days from now.  Today at church over the pulpit a fellow church goer ...

 I cannot even stand the thought that the last time I did a blog post my momma was alive and well. There were no signs of cancer in her. We were living our best summer life and I had just been declared stable for another 3 months. My mom was ecstatic. She was and always has been my biggest cheerleader. Now here we are a few short months later and she has gone to heaven. It still is not real and I am so very heartbroken. I miss her so much that it aches. I long to pick up the phone and call her just to chat. She was my best friend. I love you for eternity mom. Thanks for being my angel…just in a different place now.  Things felt even more heavy this last week because my next scan was “calling” it was time to check on my NET’s (neuroendocrine tumors) and see where things were at. So I did the scan Tuesday and met with my doctor Wednesday to go over results. Talk about scanxiety. I don’t know if it’s ever going to get easier. But it’s for the rest of my life so I’ve got to figure...

  Hello friends! Hope you’re having the best summer, soaking it all in. I’ve been trying to do just that. It’s been amazing to be feeling so good, I feel so normal. It’s amazing how that happens when the chemo leaves your body.  Yesterday I had a PT scan to see how things were looking.  For days leading up to it I was so irritable and grouchy. I hate that I get like this but the anxiety I feel before a scan is almost too much to handle. “Scanxiety” is what a lot of people call it. The night before the scan my emotions got the best of me. I was just so sad and scared. I wonder if this feeling will ever go away each time I go in for a scan? I believe this is the 5th scan I’ve had since January…but I felt the most anxious about this one so far. Or maybe I’m just forgetting the other times?! This morning I met with my oncologist. I felt much more calm and collected and I know it was because of the prayers being said on my behalf. They brought a peace to my soul. Thank you fri...

  Hello! This morning we met with Dr. Low to go over the scan I had earlier this week. And drum roll please…..the tumors are stable!! If he would’ve said! “They’re gone” or, “They‘ve shrunk”, then I might have kissed him! But listen, I will take “stable” any day over the alternative. I am truly grateful and feel this is a small miracle in this cancer journey. Brandon told him how we like to pray for specific things and asked him what would be something specific to pray for. And he said “That these tumors remain stable for a very long time.” So I would love to invite you to remember that in your prayers if you would:) we are still holding out for a miracle. A miracle to us could look like the cancer completely leaving my body or for what is there now to remain stable for many years to come.  The short term plan is to scan again in 2 months. If things are progressing then we will start oral chemo to see if that will keep things at bay. And if things are stable still we will do n...