Struggling with Leukemia: The Bad Side of Cancer Pt. 2

For the past six years, I have dealt with Leukemia in one way or another. In part 1 of this blog post, I briefly shared a few of the ways that living with Leukemia 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. It’s not because I won’t, or don’t have the ability to. It’s just that 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 would lead to self-pity, hopelessness, or a dependency upon perfect circumstances. More often than not, I have succeeded with this disposition. This post is about the times that I have not.

A brief history of my illness begins in my then hometown of Wichita Falls, Tx. Before I was diagnosed with CML, I had lost a lot of weight (25 lbs) over an indefinite period of time. I went to my primary care physician, who referred me to a gastroenterologist. After blood tests and 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 battled with some of 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 moved to Dallas to take a promotion with my company and was excited about the new opportunities of living in a big city, with more to do. Soon after I settled in, I experienced another setback.

I had run out of my Leukemia medicine sometime in August of 2009, however, I never took time off of work to go back to Wichita Falls. By December, I started to feel physically weak again. Cognitively, I knew that I had made the mistakes of being inconsistent with my medication, but I hadn’t yet reached the point of doing anything about it. I felt good physically, and I felt like I always had time. It was a classic case of immaturity. With a new job and new adjustments, finding an oncologist to treat me in Dallas wasn’t one of my greatest concerns. I made a lot of excuses. Towards the end of that month, I finally called. The office told me that to receive a refill, my doctor would have to see me for a visit first. But I never went back. Instead, I had them refer me to an oncologist in the Dallas area so that I could begin my treatments locally. I received a call from Baylor Medical Center a day later. Because of my history of non-compliance (inconsistent visits and treatment), they wouldn’t accept me as a patient.

I remember growing briefly bitter towards Baylor Medical Center for not taking me in. I had felt as though they had just 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. It ended up being a good thing. That was the first time that I knew that I needed to make some major changes. I could no longer live as if I didn’t have an leukemia. The balance of life and illness that I had emphasized early in my illness had tilted towards irresponsibility and I knew that I was to blame. When I heard a couple of days later 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 that I could to show a renewed commitment to my body, mind, and spirit. I began exercising, eating healthy, and taking my medication every day, regardless if I could afford it or not. I made every doctor’s visit, asked every question, and didn’t make any excuses. I began feeling good about the process again. I was still on Gleevec at this time. My blood counts normalized, and things were going well. After three months of continued therapy, they drew bone marrow to look at the cells under the microscope. I was excited to learn how well my renewed efforts would pay off. Even Katie had come 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 would suggest he would soon share information that 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 while we talked. I had always kept it together, but I flashed back to all of the efforts that I had made, the lessons I had learned, and the hard work that I had put in over the previous few months. Katie was to my left. I kept thinking about how I had to keep it together for her. I couldn’t look over. Dr. Collins kept talking, and as my eyes struggled to hold all of the tears within, I knew the reservoir wasn’t big enough. 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 cried, right there in the doctor’s office. That was the first time I realized that this was out of my control, that I would have to go through this at the mercy of God and science. My body had betrayed me. I would find resolve after we walked out the back door of Dr. Collin’s office, but I knew that I would have to start all over. By the time that I got home, I was okay with that.

A few weeks later, I was sitting in my work truck, eating lunch in the middle of an empty parking lot when the 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,” she stated. I instantly 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, but she didn’t answer her phone, so 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, but I didn’t want to call my boss and tell him what had happened either. In fact, I didn’t want to do anything. I allowed myself to try and digest all of the feelings and emotions that I experienced so that one day I wouldn’t have to deal with a feeling that I had long since suppressed. 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 glorifying or validating them to the point where they would control me rather than me controlling them. It was like living life in a rain storm. I experienced it to the full, and then I let it go. Every time.

There are still moments where I lay in bed and doubt everything. I’ve had moments of resentment, regret, low self-esteem, and heartache. I’ve felt not good enough, hopeless, helpless, forgotten, vulnerable, worthless, and have second guessed everything I’ve done. When I post one of my blogs, I question whether I’m over-sharing or if I’ve been too open and honest. I sometimes feel the resentment of feeling job-locked in a job that impedes my dreams of working to help people simply because I need the insurance. I feel all of those things. However, none of those things define me. If I were to tell my doctor about all of those moments, he’d diagnose me as human. I don’t allow those feelings to stick around. They are all untrue, therefore, I work around them. I choose to enable my strengths to go to the plate and hit for me. My weaknesses ride the bench until it’s time to practice. They don’t get to play in the games.

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

To endure and persevere through all of our low moments isn’t anything worth giving up on. Just 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. I thank God every day that I’ve been given a chance to say I’ve been through the lowest of lows and because so that I can experience the highest of highs.

Six years ago I stared into an ocean. Today I swim in it.

Posted in: cml

3 thoughts on “Struggling with Leukemia: The Bad Side of Cancer Pt. 2”

  1. i needed the verses you shared today. thank you for letting the Lord work thru you, thru your writing. thank you for sharing, it's definitely not over-sharing!

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