I'm on my way to this trial in Beantown. It is christmas night and I am at my Dad's house in Wilmington. Tomorrow My sister and I will drive to her house, where we will meet my mom. My mom and I will go into to meet the director of the clinical trial on Tuesday. I'll fill out some paperwork and then get an MRI and a Spinal tap as late Christmas presents. Then I have appointments january 3rd and 4th which will be used to hook up the device and check back in to make sure it is hooked up correctly. From there I'll be allowed to continue any activity I can handle and then check back in monthly for a new scan. Treatment will continue as long as the tumor does not progress.
This was the hardest Christmas that I can remember. I had minor episodes on Wednesday and then again on Saturday. I spent the majority of christmas eve feeling out of it which carried over to christmas day. I felt awful, I had literally a splitting headache all day which served as constant notice that this is not getting better. Things are changing and getting harder and I know why. I could not get myself packed for this trip up to boston on my own. I could not figure out what I needed to bring or where it was.
This has been my greatest fear all along. When I encountered this second tumor I knew I was the under dog in this fight. I accepted that while I would not give in, tumors would likely be what killed me. What scares me is that I'll spend whatever time I have left confused, or as a different version of myself.
I should be back down in the Baltimore area by mid January. Wish I could say more but I don't know what to think right now.