I have leukemia. I am lucky.
I never think of one without the other. It may sound like I’m crazy for thinking that way. After all, life would be much easier if I didn’t have a life threatening illness. In fact, if I could choose, I would choose to not go through any of this at all.
However, I’m lucky because I have chronic myeloid leukemia. It’s a manageable, slow producing blood disorder that, to this point, has been treated with chemotherapy in pill form. I’m lucky that I don’t have to worry about it being a blood cancer today and find out that is in my lungs tomorrow. I’m lucky that I developed this cancer in my adulthood, when I could process all that was going on. I’m lucky that I live in an era where there are treatments that will give me a really good chance to survive. I’m lucky that I have such a supporting family. I’m lucky that I’ve been given a significant chance to grow as a person. I’m lucky to live close to a really great cancer center, MD Anderson. And most importantly, I’m lucky that I have a relationship with a loving God who has laid all of this out for me.
For the past few months, I’ve shared many of the thoughts, feelings, and perspectives that have helped me deal with my cancer. The positive responses have been humbling. And despite the countless amount of people that have told me, or someone I know, that my blog has inspired them, I have to admit that I have been the one who has been inspired by it all. This has been an amazing journey.
The journey hasn’t been an easy one. Between blog posts, prayers, self-reflection, and positive outlooks, there are those human moments that come late at night as you lay in bed, the moments where you wonder if you really believe all that you say and where the frustration of weakness has permeated the shield of proper perspective. I would be doing myself, and everyone else who reads this blog, an injustice if I allowed anyone to walk away from here thinking that I am not vulnerable to the doubt, negativity, or feelings of hopelessness that we all face in a world full of bad news, broken relationships, and unanswered questions. And that’s why I’ve decided to blog about the negative side of dealing with a chronic blood cancer.
In January of 2006, my Oncologist should have diagnosed me with CML and vulnerability. The first lesson you have to make with any cancer related illness isn’t whether or not you’ll allow yourself to be vulnerable, it’s how vulnerable you’ll allow yourself to be. As for me, I decided that the best way to deal with all that was thrown at me was to be as open and honest with it as I could be. I didn’t want to keep it to myself. I wanted to allow others to love me, because I had first loved them. If talking about my illness and sharing my positive attitude meant that I could make someone I cared about feel a little better, then that was something that I wanted to do. I knew that if I could learn from the good and the bad, I’d be in a much better place, both physically and emotionally. I didn’t push my vulnerability upon other people, but I didn’t keep it from them either. It seemed to have worked out perfectly.
“I had no idea you had cancer.”
The first few years that I had cancer, only the people who were around during the diagnosis knew that I had leukemia. I made a decision early on that although I would embrace the fact that I was living with cancer, I wouldn’t use it as a crutch. To me, that meant living my life as normally as I could. On days where I experienced fatigue, I’d fight through it. Moments after taking medication that caused nausea, I would regain composure. I knew I’d have to live with CML for he rest of my life. To make concessions within the first couple of years was not something that I wanted to do.
It was always a surprise to those I had met when they found out I had CML. “Wow, you look great. I couldn’t tell,” they would say. I never really knew what to say after that, so I’d always just say thank you. Over time, the continual desire to live a normal life caught up with me. The habitual suppression of symptoms would lead to communication issues in dating relationships, a perception of non-compliance from oncologists who didn’t want to take me in as a patient, and the eventual feelings of shame for losing command of the things I could actually control.
One of the personal challenges I faced was talking to my boss about needing occasional time off for my doctor’s visits. I worked at a job where others would have to make up for the work that I was unable to perform when I was gone. That guilt led to missed or rescheduled appointments. Little did I know that an attempt to satisfy unwarranted guilt would be as damaging as it was. I could write chapters on these feelings and areas of mismanagement. Hopefully one day, I’ll get to do that.
Although physical and behavioral deficiencies shaped the early years of my diagnosis, a lot of the challenges one usually associates with cancer arrived when I received the information that my cells had mutated and there was no medication on the market to treat my condition. I’ll share some of those experiences and mental struggles in part 2 of this blog post.