Locked In My Own Head

Hey everyone!

I wanted to give a quick update about our last two trips to Birmingham:

We headed down to UAB on Tuesday, July 26 to stay at our hotel for our early morning infusion on the 27th. I had some new symptoms that I was worried about—random hand tremors, some depression (despite all the running I have been doing to negate this), short-term memory loss and word finding issues to the point where I literally can not speak. Dr. Saleh said he was 99% sure this was all from the treatment, since I wasn't having any headaches or neurological problems (seizures, right side of the body weaknesses, etc.), but he ordered us to stay another night and get an MRI just to see what was going on under the hood. We proceeded with the scheduled infusion.

The good news that came out of that MRI is the tumor continues to remain stable, so more than likely these new symptoms are from the treatment—yay!

Which brings us to our most recent trip:

We loaded up the car again on August 9th to head down for our infusion appointment on the 10th. Poor Elizabeth was battling a fever and cold. I felt so bad that I told her I could find someone else to take me, but she insisted she wanted to be there for me :) .

At this point, the symptoms I mentioned above have only gotten worse since the July 27th infusion, and Dr. Saleh noticed. He was worried about me and said they could talk to the drug sponsor to see if I could take a break. I said we can re-evaluate come next time, but I would go ahead with the infusion.

I can feel my circle of friends getting smaller and smaller, simply because I am embarrassed that I can't speak sometimes. I am scared of going into work because I may encounter someone who doesn't know what is going on when I have trouble speaking.

For example, one of my fraternity brother's has a podcast, and he asked me to come on and talk about how I grew a team of two to a team of around fifty—mainly on how I coached up a successful crew of millennials for Bellhops. I walked into his office and tried to get out words. I couldn't speak. I knew what I wanted to say, I just couldn't say it. I had to send him a text (with him right in front of me) that I couldn't speak. Talk about embarrassing. He of course understood, but words can't express how frustrating these symptoms are for Liz and I both—her being helpless to the situation and having to watch her once quick on the feet husband diminished to this. These 'episodes' usually last for like 20-30 min, but have been getting longer and longer.

Just today, I was trying to make some keto-friendly brownies and couldn't follow simple directions. I kept having to go back and read from the beginning because I forgot the first step. I finally gave up and went to my room. As I was writing this, I had to think long and hard about how to spell the word fifty.

Sorry, I know I'm venting, but I needed it.

So, I asked Dr. Saleh, while we were in Birmingham, if these symptoms will go away. His response was honest. They don't know. Even in the best case scenario and the tumor shrinks to nothing, he said they really don't know. I guess that's my job :) .

My morning trail run spot - Edward's Point. This is a special place where I can be in the present and enjoy all of God's creation without having to speak.

Thank you to all those who continue to pray for our family. As you can tell, they are much needed right now.

Much Love,

Nathan