I left Dallas on Tuesday afternoon with so much on my mind. I swear that the extra weight on my shoulders cost me more in gas money. With the news two weeks ago that my medicine wasn’t going to work anymore, I was at a point where I didn’t really want to do anything. I didn’t want to work. I didn’t want to go to school. I just wanted for everything to stand still. I needed it to. It didn’t. My mind kept going, and going, and going…

I tried not to let it consume me, but there was just so much to think about. I imagine it to be the same feeling I’ll have when somebody close to me passes away. It’s like the world keeps moving, but it’s not supposed to. In those moments, you live in everyone else’s world. And there’s no way to explain to them that life would be much simpler if, just for a few days, they lived in yours. Your run becomes a crawl, and you celebrate that, because at least you’re out of bed.

It was the perfect time for a long drive. I spent much of it reflecting, some of it praying, and the rest just being still. I wanted to clear my mind a little. I had been under water for so long. The first gasp of air was perfect.

We were scheduled for a conference call with Dr. Cortes (oncologist) sometime after he made his clinical rounds on Wednesday. We were given a time frame between 12pm and 1 pm. My mom and I sat idly by. My dad is working in Kuwait, but I was going to try to three-way call him once I received the call from the doc. Noon came and went, and we just waited.

I was nervous. Much of my previous anxiety was due to the frustrations of not really knowing much of anything. All I knew was that I was in a hole, but I had no idea how deep it was or what tools I’d be given to get out of it. That really weighed on me. 1pm…1:30pm…2pm…nothing.

I checked my email. I had been emailing Alexa, the PA (who has been a great ally in the area of communication), and I was hoping for some sort of reason that my doctor hadn’t called. I saw a new email from Alexa stating that Dr. Cortes had a meeting to attend immediately after rounds and that he would call me afterward, around 3pm. 3pm came and went. My mom and I waited patiently.

I began to regret this decision to set up a conference call. Originally, we were scheduled to go to Houston. However, with my mom in Wichita Falls, she wouldn’t have been able to leave until after work on Tuesday, which would have meant driving to Houston at night and hoping to arrive within 7 hours. Then we would have had to wake up early for a 15-30 minute appointment before fighting Thanksgiving traffic all the way back to Wichita Falls. I figured we could sacrifice the money and hassle for a less personal manner of communication. That’s what I decided to do. I figured if I wasn’t comfortable with the way that it went, then I’d schedule another appointment the upcoming week.

I emailed Alexa around 4pm and told her that we still hadn’t heard anything. She responded right away and said that she sent Dr. Cortes an additional reminder and that she hoped he’d call. At 5pm, I told my mom that I’d given up, and that we should just go on about our day. I was frustrated and mad that I had wasted an entire day, while on pins and needles. I felt insignificant. I have always made it a point to follow through with the little things that could impact others lives. “From now on,” I thought, “I’ll never let anybody down again.”

My mom and step-dad live outside of town. Around 5:30pm, I got in my truck and started to head into town. I was so mad. I tried to search for perspective, but I couldn’t understand why we weren’t called. I really wanted my mom to be involved in the question/answer session. On my drive, I began to pray. I needed to vent my frustration. Having an idea of what the trial consisted of would have taken so much off of my mind. I wanted that to happen before I spent quality time with my family at Thanksgiving. And it looked like I would carry the burden of not knowing for the entire break.

I spent a solid five minutes in prayer. I came to a stop sign, paused my music, and got silent. I looked left, I looked right, and I made the turn onto the county road. My phone rang. An unidentified number from Houston, Tx. PRAISE GOD!

I gave it a good ring or two. I don’t know why. I’m always afraid to answer the phone too quickly. Maybe it’s because when I call someone, I’m not always ready to talk in the middle of the first ring. It was Dr. Cortes. My first reaction was to turn around. I wasn’t far from the house, but I quickly remembered that I had told my mom to go ahead and do what she needed to do. As I was leaving the house, she was getting in her car to make a trip to the grocery store. I kept driving, and looked for a place to pull over.

Over the next 20 minutes, I talked with Dr. Cortes about the clinical trial DCC-2036. I didn’t have my questions in front of me, but I received answers for my biggest concerns. Clinical trials are experiments. The goal is to treat a patient with a drug that has shown effectiveness in a lab. It’s the birthing process of getting drugs FDA approved. DCC-2036 has shown some effectiveness against the t315i mutation in humans. I’m “joyful in hope” (Romans 12:12) that I am one of them. After taking in all kinds of protocol information, I ended with the most important question I felt I could ask: “If I were your son, what would be your advice to me?” He said that he’d recommend I give this trial a shot, and at the same time start the process of meeting with the bone marrow transplant specialist.

The thing I’ve liked about Dr. Cortes is that he’s really personable and honest. He told me that if I didn’t feel comfortable with this trial, to let him know and that he’d go back to the drawing board to find something else for me. However, he said the DCC-2036 trial is the best of what’s available. There is another trial that he would have liked to have put me in, that is little better, but the trial is closed and is no longer accepting patients. I will move forward will the DCC-2036 trial. More information on CML and the strategies to fight it can be found by clicking here.

I felt so much lighter after I got off the phone. Dr. Cortes apologized a couple of times for calling so late, and said that if it wasn’t for Alexa’s reminder, he might have forgotten to call. I emailed Alexa right away and thanked her for doing the small things that people often take for granted. I let her know how grateful I was for the “little things” that she did, but didn’t have to do. More often than not, it’s much easier to let something go instead of taking a little extra time to make sure it gets done. She didn’t have to send an additional reminder, but she did, and it was the difference between being weighed down over the break and having an amazing few days of relaxation and peace of mind.

In my job, I always try to do the small things for other people. Most of them will never know that what I did affected them, but I do it anyway because I have a heart for people. If you pay attention, those selfless moments start to come back around at just the right time. It’s beautiful.

And in the end, everywhere I look reveals the magnificent hand of God.

“Here I am, Justin.”

“I know that you can do all things; no plan of yours can be thwarted…My ears have heard of you, but now my eyes have seen you.” Job 42:2,5

3 Responses

  1. Hey, I go to MDA and Cortez is my doctor also. I got on the Tasigna study right off the bat. It was AMN 107 when I started. All has been good besides an array of side effects that are manageable and a bout of thyroiditis.

    It will take me a while to get through all your posts. I will pray for you. I am older than you but when I read other’s posts I am not certain if it is not old age setting in vs. the reaction to the drugs. I have had many of the same emotions that you have mentioned. But I need to get ready for work tomorrow. Keep going, please. One day at a time and all is well. My two favorite thoughts.

    1. What a small world. We can take comfort in knowing that we have an excellent doctor! I couldn’t have asked for a better treatment team.

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