Pain and Suffering

Hey everyone!

Since you haven't heard from me in a while, I thought I'd update you on my current state of mind and condition.

First of all, my family and I are so grateful that God has given us this amazing platform to tell our story from—to be a tool on God's tool belt. We are blown away daily by all the encouraging texts, emails, Facebook messages, letters, gifts—you name it, and we've received it with gratitude in our hearts. We were humbled to be a small part of Rick Dunn's incredible sermon titled "Jesus the True and Better Isaac" at Fellowship Church in Knoxville this past Sunday. Thank you for continuing to keep our family lifted up in prayer, when it is past the point of being 'headline news'. I guess to sum it up, we are being used in ways we can't fathom here on Earth, and for that, God is to thank.

My strong wife and sweet mom summed up the past year better than I ever could. I cried as I read both of their updates. As I look back on the past year, sure there has been a lot of pain and struggle, but out of it has come growth. As my mom said to me the other day—she was quoting A Year In Burgandy,

"A vine has to suffer to make good grapes. You can't coddle it or it will become lazy, like a couch potato."

Our roots have grown deep to survive the drought, and it has shown in the harvest. Our family has reaped some fine wine out of all the pain and struggle we have had to endure in the past year, and I wouldn't change a single thing. My only hope is that God will continue to work through our family, as He has been doing.

The Update:

Due to some adverse side effects a few weeks ago, I was off of the oral pill I had been taking for the past few weeks and was on a low dose of steroids. They wanted me to wait to take the oral drug until I was back at UAB and under my team's supervision. That was last Wednesday (6/15).

A lot people have asked "haven't you been taking the daily, oral pill for the last several weeks and not had a reaction?".

The simple answer is yes. The long answer is this particular oral drug (Epacadostat) takes a while to work, because it is essentially changing the cellular structure of your body. So, when I was taking it early on, it was in the early phases of changing my cellular structure.

Then came Wednesday came along..

Last Wednesday—aka "the worst day of my life":

They gave me the oral pill at 9:00am, and I had the infusion of Nivolumab a couple hours later...

That's kinda when I stopped remembering. I seriously thought—no joke—my head was going to explode. My eyes were blood shot red from the pressure building up in my brain, and I couldn't see more than two inches in front of my face. They gave me a high does of steroids in attempt to relieve the pressure build up, but nothing worked. Eventually, they gave me pain medicine through an IV, which helped at the time. They debated on keeping me at the hospital, but I chose to go back to the hotel—big mistake. The pain medicine that made me feel better for long enough to say "I want to go back to the hotel", caused me to throw up every two hours on the dot throughout the night.

I couldn't stop the headache to save my life. If I took the pain medicine they prescribed me—even with an anti-nausea drug—I felt better for a second, and then I would throw it up. I finally ended up going to sleep around 3-4am, and we had to be back at the hospital at 7:30am. ughh. The worst part about it was they were going to make me take the oral drug again the next day.

Thank goodness for Dr. Saleh's grace when he decided to not have me take the pill. Luckily, I had a similar reaction, though not nearly as bad, when I took just the pill a few weeks ago without the Nivolumab infusion. So, we decided that it was the pill causing this insane reaction.

In Dr. Saleh's words, this is a good thing. It means the drug is doing its job—just a little too well.

Where do we go from here?

We are going down for our first MRI since I have been on this study, on June 29, to see if the drug is doing its job. If it is, then we will attempt the oral pill again, but at 1/3 the dose. If I have a reaction again, then they will take me off the oral pill for good, but still do the Nivolumab infusions every two weeks.

If the MRI shows signs of tumor progression—well, we will cross that bridge if/when we get to it.

———

Why do we have to go through pain and suffering—sleepless nights throwing up, your head feeling like it is going to explode, my poor wife helplessly witnessing this? Because good, beautiful things come out of it—even if it is not the healing we are all praying for.


Thank you for your continued prayers.

Love,

Nathan

My good friend, David Nichols, was driving through Birmingham and decided to pop up and see me!