Just a Bump in the Road

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