Alinea

What's up everyone!

We got back from UAB last Friday, where we had another MRI. The treatment continues to hold the tumor in a stable state, which is great news! This was a big MRI because it showed that the infusion alone is keeping it stable.

It may be my generation (or that I am generally impatient), but I am ready for the tumor to either start shrinking or progressing—preferably the former. What is that quote from Shawshank Redemption? "You either get busy living or get busy dying". It is morbid thing to say, but that is kinda how I feel. I have to learn to trust God's timing. Sitting still has never been my strong suit. After everything I have gone through, this is the thing I continue to struggle with the most. It so much easier to say it than do it. Trust in God. Trust in God. I can say it all day. I can say it to other people no problem (well, when I can talk ; ) ), but when it comes down to it, am I really trusting God? I don't think so. I am trying, but I am doing a poor job.

I can definitely tell God is trying to make me sit still, because he has stripped me of the one thing that brings me joy—running. I went to the doctor and long story short, I have a Morton's Neuroma. I got a cortisone shot today, so hopefully I can get a few more long training runs in before my first 50k on Oct. 1, but it has really bummed me out (my wife can attest to this, as I am miserable when I can't run). This is definitely God saying to sit still and couldn't be worse timing, but I have no choice in the matter now—he is in control and knows exactly what he is doing.

In a search to find something to do that doesn't involve running, I went fly-fishing (one of the few things I can do) with a friend of mine, Jared Houghton, who told me this crazy story of how he and another one of my friends, Travis Truett, met this guy named Nick Kokonas (the co-owner of this 3-star michelin—the highest rating— restaurant called Alinea) at a party. Long story short, they had no idea who this guy was, and he invited them to have drinks at his restaurant. Jared and Travis were talking about how we had this restaurant in Chattanooga that had the best fried chicken. Not knowing they were in a 3-star michelin restaurant, Nick went back and stopped the kitchen and had them make fried chicken... Needless to say, Jared said it was the best fried chicken he had ever put in his mouth. Eventually, they found out this place was the first episode on this Netflix's show Chef's Table - Season 2. Crazy.

My mom was in town this weekend and she loves cooking shows. I told her about the insane story Jared told me, so we decided to watch that episode. It tells the story of the chef, Grant, and his rise to success—all the awards, the recognition, etc. That is when the story line flips. He had a spot on his tongue that he went to see the doctor about. Cancer. They gave him a 2 month prognosis. He chose to live out his life without going through all the surgery, etc. The story of Grant's cancer, because of him being a world renowned chef, eventually became public knowledge. He was contacted by University of Chicago Medical Center, where he was talked into doing a phase 1 clinical trial (sound familiar?). As he began treatment, he slowly began to lose his taste until it was completely gone (think about all the symptoms I have). The chef who couldn't taste. He had to think of new system of how to get across a certain taste to his staff of cooks. It made him more cerebral, more creative. It forced him to think about things in a different way. This became the "new normal", and he accepted it. At the end of the episode, you learn that he is cancer free. He starts to taste sugar again.. then he starts to taste salt, until he regains all his taste!

My mom and I just sat back and didn't talk after it was over. We are both processors and just had to take time to process what we just watched. I couldn't think of a better message for me to hear. It gave me a hope that I have been longing for—that the tumor will shrink and these symptoms I am having will eventually go away. Maybe God put a neuroma in my foot just so I could go fishing with Jared, hear that story, which would prompt my mom and me to watch that episode. It would be just like God to take a painful neuroma and turn it into a message for me to hear. Nothing in this world is a coincidence.

Thank you for all of those who continue to pray for my family and me! They are working in ways we never expected.

Much Love,
Nathan

Alinea

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