Week 5: A Marathon of the Mind

Things are starting to become mentally tough. I feel like I’m on mile 20 of 26.2 mile marathon. My legs are getting tired and my mind is starting to wonder. I realize that I can’t turn around. Although, why would I want to? I’m almost to the finish line. This is the battlefield of hope, optimism, and endurance. The body is tired and the mind is vulnerable. A reliance upon feelings will always deceive. A reliance upon God’s promise for renewed strength (Isaiah 40:31) will always persevere.

This stretch would be easier if I didn’t have to add eye doctors to my list of appointments, but I’m hopeful to start the process of restoring my vision on Wednesday morning, when I’m scheduled for an exam with a glaucoma specialist not named Snoop Dogg. Although it’s still believed that the drug trial medicine induced my eye problems, the signs and symptoms appeared as acute angle glaucoma. The ophthalmologist at MD Anderson, by her own admission, stated that she was not a glaucoma specialist and that I might want to see someone who is. My hope is that something is able to be done to restore the perfect eyesight that I had only a couple of weeks ago.

The real challenge, however, is being away from home. I haven’t been home in over a month. If you’ve ever spent that much time on the road, I’m sure you can empathize with what it’s like to be out of your element. You don’t realize how much you crave structure until you don’t have it. I haven’t slept in my own bed, I’ve cycled between dependence and independence, and Katie and I have traveled from Dallas, to Wichita Falls, to Houston, to San Antonio, and back. I’m very thankful that we’ve had a place to stay, that I’ve had an amazing caregiver, and that we’ve had the money to afford the gas and transportation. It’s been tough, but those are the realities of treating the unknown. I’m anxious to get home.

Katie’s birthday was this past weekend. We traveled to San Antonio to get away from all of the craziness in Houston. It was such a tumultuous week for us that we figured it would be good just to be with family, away from the “Okay, what do we have to do today?” mantra that has conditioned us the past few weeks. We’ve both been so exhausted that her birthday wish was to not do anything at all. She didn’t want a schedule to follow, people to see, or places to go. She just wanted to hang out at her parents house. I was perfectly okay with that. It made for a nice Saturday and Sunday.

Hopefully, we’ll learn about the Ponatinib this week. Dr. Cortes emailed me and said that he expected a response soon. In the meantime, I chose to remain in San Antonio to see an eye specialist. The back and forth traveling has taken its toll. In fact, if it weren’t for our potential drive back to Houston, I’d more than likely be in Dallas by now, seeing an eye specialist there. I’m thankful that staying here is an option.

I’m at that point of the marathon where getting in the trunk of the pace car is an option.

I kid. Thanks for reading.

UPDATE: As soon as I posted, I received an email from Alexa, Dr. Cortes’ awesome physician’s assistant. She said that I’ve been approved to begin the closed clinical trial for Ponatinib. We’ll receive a follow-up email when it’s delivered. This is great news, indeed! I’ll write more on this in a later post.