Just a Bump in the Road

 It's been a while since I last posted... That's mostly due to a challenging recovery from the surgery. I'll get into more details later. My brain surgery was on August 6th at the U of U Hospital in Salt Lake City. We decided to do the surgery because I was struggling to get off of the steroid and my body was deteriorating from extended use of the steroid. A few days before my surgery, my grandpa gave me a priesthood blessing that provided me and Kim with a lot of peace. I sure love the priesthood and its power. Unfortunately, Kim was unable to spend any time with me in the hospital due to COVID-19. Personally, I think it's stupid. If I was 17, Kim would have been allowed in. Oh well, we deal with what we are faced with. Kim dropped me off early in the morning around 6:00 am which was really hard for me. Since we had to leave so early, I packed my back the night before! It was rather hard to walk away from my wife knowing what I was walking in to, but we know God provid...

Several weeks ago, after three failed attempts to manage seizures with steroids, I met with Dr. Randy Jensen, the neurosurgeon at the Huntsman Cancer Institute (HCI) to discuss what to do moving forward. After a lot of discussion, it was decided that we would do an extended taper off of the steroid. The taper was meant to be seven weeks long, as opposed to the prior three tapers that were between ten and fourteen days long. We all felt those first three tapers were far too short. So, I embarked on a journey with an extended taper in the hopes surgery could be avoided. The first 3.5 weeks of the taper went really well. I didn't have any issues pertaining to an onset of seizures and that was great. However, toward the end of the 1 mg twice a day dose, almost four weeks into the taper, I started to become rather fatigued. Lots of naps and no energy. By the time I started the next step in the taper (1/2 mg twice a day), I was started to have weird feelings in my chin/lip and i...

On July 9th, I had another infusion and x-rays for my arm. This was my first infusion wherein I would be awake while my port was accessed. I had been told to use a numbing lotion prior to the infusion being done to help with pain. I wasn't really sure how to respond to that...it is just a poke, right? Anyway, I did end up putting on some numbing lotion prior to the infusion. Did it help? Well... Who knows! haha The nurse that worked with me that day was excellent! When she found out it was my first time having my port accessed, she was really great at slowing down and explaining everything to me. Fortunately, I had learned that I needed to wear a 1/4 zip top for easier access without stretching my shirt neck. I STILL had to stretch the 1/4 zip top so that she could get the bandage on to hold the needle in place. Speaking of needle... It doesn't look like a normal needle. It looks much bigger! haha When she stabbed me with it (I use that term intentionally...), it was somewhat...

When I first started my infusions about a year ago, a port was brought up. I knew I'd be receiving infusions for a couple of years, and so a port seemed like a viable option. For whatever reason, though, I just didn't want one. I guess it seemed to "brand" me as a cancer patient and I wasn't ready to accept that. Besides, I hadn't had any issues with IV's up to that point and it just seemed easier to me to get stabbed every time I went in. And so, I decided to not have a port put in. Fast forward a year to a few weeks ago... In the beginning, my IV's went really well. But for a while now, they've been rather annoying. There have been several times that three and four attempts at an IV has been needed. There have also been times when the IV that was placed was painful, including the last time that I had one. This last time, every time a flush was performed, it stung. Also, my IV's have been leaving bruises for weeks. In addition to these iss...

This past week was a big week with a couple of visits, some new scans, and another infusion. The fallout of this last bit of radiation on my brain tumor has been quite the adventure! I haven't ever experienced something quite like this and Kim and I have sure enjoyed the unknown! Three ER trips has kept us on our toes and anxious for some sort of concrete direction on what needs to happen. On June 4th, I was able to get another brain MRI done to see where things were at with the irradiated tumor. As I mentioned in my last post, there was a fair amount of swelling around the tumor, but no new tumors and no growth of the other tumors. The belief, with regard to the irradiated tumor, is that the swelling and growth is strictly due to the tumor responding to treatment. On Tuesday, June 9th, I was able to meet with Dr. Jensen, the neurosurgeon at Huntsman, to discuss the results and to formulate a plan moving forward. He showed us some images of the scans. Here are the images: ...

Here's a bit of a recap... On April 2nd, I had a small tumor, that had grown in size over the course of two consecutive MRI's, irradiated. I didn't experience any issues following the treatment until April 20th. On April 20th, I experienced several small seizures that resulted in a major seizure shortly after arriving at the ER. I was then transferred to Huntsman Cancer Institute for testing and monitoring. It was determined that the tumor was likely the c ause of the seizure. Typically, tumors will swell after being irradiated as part of the dying off process. I was placed on steroids and anti seizure meds. On May 11th, a few days after getting off of the steroid, I was readmitted to the ER after struggling a few days with headaches, fever, nausea, etc. No seizures, but back on the steroid for two weeks. Now for the update... On Wednesday, May 27th, I finished up my steroids again. We wondered what would happen. Like clockwork, on Friday, I was exhaus...

After my seizure episode, Kim approached me about something that I never thought I'd have to deal with. At least, not as a 33 year old. She approached me about getting a medical alert necklace so I could alert 911 if something happened to me while I was home alone. This may seem weird, but that was a challenging thought for me to wrap my brain around. It probably seems really weird considering I'd wrapped my brain around the fact that I was 31 years old when I was diagnosed with stage 4 cancer, had emergency brain surgery, emergency spinal surgery, arm surgery, several ER visits, multiple ambulance rides up north... You'd think by now, a medical alert system would seem natural. While it logically made sense to me, it has been emotionally challenging for me to grapple with. And that all came to a head yesterday... Kim, who never ceases to amaze me, spent a lot of time researching medical alert companies and she spent a lot of time on the phone trying to find the best optio...