Just a Bump in the Road

Thanksgiving for our family is a little different than most. When the kids are with us for Thanksgiving, we have pizza subs for dinner and root beer floats for dessert (Well, I refrain from the root beer float...). No turkey. No traditional sides. No pie. The reason for this? Four years ago, Kim's dad, Dave, unexpectedly passed away the day before Thanksgiving. The next day, no one felt like celebrating Thanksgiving, to say the least. I suggested we make pizza subs since that was one of Dave's favorite things to make. In fact, he'd wanted to open up a shop to sell them. Since then, that's become a regular tradition on Thanksgiving. Not only does it provide us with an opportunity to remember Dave and celebrate his life, but it's far easier to make and clean up than a regular Thanksgiving dinner! lol Anyway, this year was no different. We all enjoyed pizza subs for dinner and they were sure good! We also started the morning off with family scripture study and a real...

So on October 31st, I had an appointment with the PA for my back doctor. I had emergency spinal surgery on February 10th to remove a lesion that was compressing my spinal cord. The compression caused me to lose movement in both of my legs and the ability to urinate normally. So that was almost 9 months ago. Unfortunately, I still struggle on a daily basis with pain at the incision site as well as extreme soreness and discomfort in the muscles between my shoulder blades. The pain at the incision site is a random, all day type of pain. The discomfort between my shoulder blades tends to get worse as the day goes on. The more I do throughout the day, the worse the pain is. In fact, there are times that I struggle to stand up anymore because the pain is so much. I'm not an expert, but I had assumed that after 9 months this type of pain would have been resolved. I know the muscles in my back are being asked to do more and to adjust, but I thought that would have been resolved a while ago...

So on October 29th, I had a visit up to the Huntsman Cancer Hospital for a visit with my oncologist and an infusion...maybe. After my October 8th visit, Dr. Hu, my oncologist, decided that we should restart my immunotherapy infusions, but only if the neuro-ophthalmologist cleared it and my body continued to improve. These are the side effects I'd dealt with from immunotherapy and the steroids... -Swelling in my face, stomach, knees, and ankles -Nausea -Vision problems -Lack of energy -Tender to the touch -This weird zinging/tingling sensation in both legs (Feels kind of like your legs are waking up, but all the time) All in all, it's been quite the journey since starting my immunotherapy. My last infusion of immunotherapy drugs was on August 22nd, over two months ago. During the time since then, I've also been able to get off of my steroid completely. As of my visit on the 29th, I was on NO DRUGS! Since entering the hospital on January 24th for my emergency brain s...

So my eye wigged out on August 23rd. The bottom half of my vision in my left eye was basically a grey, blurry screen for several days. After taking a steroid for a little while, it improved to where it has been for the past month and a half. I have sort of this light somewhat transparent line just below the midline of my left eye. I can basically see normally, but occasionally I get some light flare going on from the line. It gets worse when I look at screens like my phone or computer, but it's not terrible. Fortunately, it hasn't impacted my life for the most part. Anyway, my oncologist wanted it checked out and the ophthalmologist, who couldn't figure out what was wrong, wanted me to see a neuro-ophthalmologist. My appointment with the neuro was on October 23rd. I guess a neuro-ophthalmologist focuses more on how the brain interacts with the eye and they were hopeful an answer could be procured by seeing one. So there were a few tests done that day. They did a field of ...

On Tuesday, October 8th, I had appointments up north again. We had an immunotherapy infusion temporarily scheduled. Dr. Hu wanted to see how I was doing before she started me back up on the infusions. When we decided on September 12th to forego infusions for a while, it was explained to me that I was sort of on the edge of a cliff... I was seeing a great response, but the side effects I was dealing with (issues with my vision, swelling, etc.) were somewhat severe. They wanted to allow my body to "simmer down" before moving forward with more infusions. So! Back to the 8th... I had my blood work done and then met with Dr. Hu and her team for the first time. Dr. Hu is a melanoma oncologist, but her research focuses on immunotherapy treatments. We thought that would be a good match given that I was on immunotherapy and likely would be for a while. After talking with her, she wanted to hold off on the immunotherapy infusion for another few weeks to allow my body more time to r...