For the past six years, I’ve dealt with Leukemia in one way or another. In part 1 of this blog post, I briefly shared a few of the ways that it has affected me from the outside in. However, the vulnerability of a cancer diagnosis goes a lot deeper than mismanaged appointments, miscommunication and having trouble getting treated. The greatest struggle is the battle within the mind.
I don’t like to talk too much about the negative. I decided early on that I wouldn’t allow myself to be victimized by cancer. In the past, I’ve quickly dispelled any feeling that could lead to self-pity, hopelessness or dependency upon perfect circumstances. More often than not, I have succeeded. This post is about the times that I have not.
A brief history of my illness begins in my hometown of Wichita Falls, Texas. Before I was diagnosed with CML, I lost a lot of weight (25 lbs) over an inexact period of time. I went to my primary care physician, who referred me to a gastroenterologist. After blood tests and a CT scan, he called and told me that I may have leukemia and that they would set up an appointment with the oncologist the next day.
I remember everything about that moment, as if it were the most vivid dream I’ve ever had. It may have been the shock that absorbed my natural reaction to such devastating news, but I saw a glimpse of the attitude that I carry to this day; “What do I need to do?”
For four years, I struggled with the events described in part one of this post. Life seemed to flow and I was doing what I could to create a situation to where I could go back and finish school (I dropped out when I was diagnosed with CML). I accepted a promotion with my company and moved to Dallas. I was excited about the new opportunities of living in a bigger city. Soon after I settled in, I experienced another setback.
I ran out of my Leukemia medicine, Gleevec, sometime in August of 2009. By December, I started to feel physically weak again. Because I started a new job, I never took time off of work to go back to Wichita Falls. I felt good physically, and I felt like I always had time. I could have asked for a day off to go back to my oncologist, but a new job made it difficult to overcome that mental hurdle. Looking back, it doesn’t make sense, but at the time, it did.
Cognitively, I knew I had been inconsistent with my medication, but I hadn’t yet reached the point of doing anything about it. Finding an new oncologist in Dallas wasn’t one of my greatest concerns. I made a lot of excuses. Towards the end of December, I finally called for a refill.
The Wichita Falls office told me that to receive a refill, my doctor would have to first see me. But I never went back. Instead, I had them refer me to an oncologist in the Dallas. I received a call from Baylor Medical Center a day later. Because of my history of non-adherence (inconsistent visits and treatment), they wouldn’t accept me as a patient.
I remember growing briefly bitter towards them for not taking me in. I felt as though they left me out to die. It was such a lonely feeling. That rejection resonated with me and I couldn’t shake it. I had no idea that I could be denied as a patient.
The rejection was a good thing. It was first time I realized I needed to make some major changes. I could no longer live as if I didn’t have leukemia. The balance of life and illness that I emphasized early in my illness had tilted towards irresponsibility, and I knew I was to blame. A couple of days later, I learned that Dr. Collins at UT Southwestern Medical Center would see me. I picked up the baton and decided to be a full participant in the race.
For the next three months, I did everything I could to show a renewed commitment to my body, mind, and spirit. I began exercising, eating healthy and taking my medication religiously, regardless if I could “afford it” or not. I made every doctor’s visit, asked every question I could think of and didn’t make any excuses. I began feeling good about the process again.
I was still on Gleevec. My blood counts normalized and things were going well. After three months of continued therapy, they conducted a bone marrow biopsy. I was excited to learn how well my renewed efforts would pay off. Even Katie came into town that week so she could go with me on my visit.
Dr. Collins walked in and sat on a stool across from me.
After some brief conversation, I asked, “So how are things looking?”
He adjusted his posture in a way that suggested his answer wasn’t entirely positive.
“Well we’re seeing progress, which is good” he said, “but we’re not seeing the kind of progress that we had hoped for at this point.” “What do you mean exactly?”
“Your cells may be mutating, and I’d like to run tests to see how. In the meantime, we’ll start you out on a 2nd generation drug called Sprycel.”
I could feel my eyes tear up as we talked. I had always kept it together, but I thought of all the hard work I put in over the previous few months and the lessons I learned.
Katie sat to my left. I kept thinking that I needed to keep it together for her. I couldn’t look over. Dr. Collins kept talking, and my eyes struggled to hold my tears. One tear rolled down my cheek. Dr. Collins stopped talking. Another tear rolled down my other cheek. I could feel his compassion.
Katie hugged me, and I could no longer hold back. I cried. That was the first time I realized that cancer was out of my control. My body had betrayed me. We completed our visit, dried our tears and walked out the back door of Dr. Collin’s office. I knew I’d have to start all over. By the time that I got home, I was okay with that. I just needed a little time. It felt good to cry.
A few weeks later, I was sitting in my work truck, eating lunch in the middle of an empty parking lot when my cell phone rang. It was a representative with UT Southwestern.
“Hi Justin, this is (?) from UT Southwestern. Dr. Collin’s office wanted me to call to inform you that we received your mutation test and you have what is called a t-315i mutation. There isn’t any known medication to treat this. If you’d like, we can refer you back to MD Anderson.”
What does that mean?
“I’m not sure. I’m just relaying information….”
I was numb. I got off the phone. I searched the web and pulled up a website that confirmed exactly what she had told me. I felt the universe shrink.
“This is it,” I thought, “I can’t believe it.”
I called my mom. She didn’t answer. I called my dad. As soon as I heard his voice, I began to sob. I could no longer keep it together.
“It will be okay,” he told me. “We’ll do everything we have to do to get through this.”
It was just what I needed to hear.
I struggled with a lot of emotions after that day. I didn’t want to finish my work, and I didn’t want to call my boss and tell him what had happened. In fact, I didn’t want to do anything. I tried to digest the feelings and emotions. I sat still, and was quiet.
The rest of the story is written in my blog. I’m proud to look back and read some of my older blogs and realize that I allowed myself to feel the pits of emotion without allowing them to control me. I experienced every emotion to the full and then I let it go. Every time. It was like experiencing a rain storm. It was dark, gloomy, wet and sometimes miserable, but what resulted from it had the potential to be nourishing. I had to focus on the end result.
There are still moments when I lay in bed and doubt everything. I’ve had moments of resentment, regret, low self-esteem and heartache. I’ve felt hopeless, helpless, isolated, vulnerable, worthless and have second guessed everything I’ve done. When I post a blog, I question if I’ve been too open and honest. However, none of those things define me. I don’t allow those feelings to stick around.
Here’s one of my favorite scenes from The Pursuit of Happyness:
And just know that each one of us has a purpose on earth. Choose to be a part of it, no matter the circumstance. Be a fighter.
“More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” Romans 5:3-5.
“Your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking in anything.” James 1:3-4
Never give up during your lowest moments. On the other side of that is the new you. It doesn’t have to be anything as life-threatening as leukemia. In fact, it probably won’t be. But it will be something, and you’ll have the chance to inspire others. Please don’t miss out on that chance. It’s one of the greatest gifts in this world.
Every day, I thank God that I’ve been through the lows. It makes the highs that much more special.
Six years ago I stared into an ocean. Today I swim in it.