5 years out.

Well it has been 5 years since hearing the words “you have Chronic Myelogenous Leukemia (CML)” as Sherry (my wife) and I heard those words my mind shut off. I know my doctor explained details of blood and how it was affected and such but I didn’t hear a thing. Then Sherry asked how long does Chuck have…. “the average life span of a CML patient is 5 years”. I started out the window, Sherry and Dr Root (a friend) cried. I just stared out the window. I can’t even begin to explain the thoughts that where going through my head. Actually I think I was just numb. I wasn’t even sure that Leukemia was cancer. I do remember thinking of my Mom who died of brain cancer when she was 52, I was 47, it wasn’t hard to do the math. My life as I know it will never be the same. It will affect Sherry’s life, Jessica’s life, Tim, Steph, Sam, Sarah, my Dad, by brothers, my sister. Everyone I know will be affected. What I was most unprepared for was how many people loved and cared about me and what and still do.

The hardest thing I have ever done in my life is to tell my daughter over the phone that I have CML. I didn’t know much when I told her and I didn’t tell her what my doctor said at the time. Now I am glad I didn’t, she is a smart young woman and in time, when she was ready would look up the information and find out what I knew. I went down a month or so after I met with my oncologist at U of M and it was important for me to see her, I didn’t realize how important it was for her to see me. I think she saw that I didn’t look sick and was determined to do what it would take to get a grip on this damn cancer. Over time we would talk about it openly and Jessica even went to one of my oncologist appointments with me which she was amazed and the size of the hospital and how I knew what to do, where to go, what was going to happen that day etc. I think this is when she realized things where going in the right direction.

All though this Sherry was my go to person for everything, she went to all of my doctor appointments with me and would take notes, ask questions and have more questions ready for my next appointment. I only remembered parts of my doctors’ visits and what was told me. It took me a long time before I was comfortable enough to go by myself. Sherry could look at me and tell when I was having a bad day, mentally or physically and she would always try to make things better. At the time I didn’t realize how hard this was for her and how she had to put on a smile when dealing with me as that is what I needed at the time. I don’t think I could have made it though all of my surgeries and just the mental part of having cancer if Sherry wasn’t by my side from the beginning.

I now know this is going to be a long journey, there is no quick fix, it will take time and if all goes as it is thing will work out. However it took me a long time to get to this point. I went through all the phases of cancer, fear, denial, anger, (a lot of anger) but I wasn’t prepared for the mental part of cancer. I still have problems with that. It is hard to live a “normal” life and just not think about cancer like some people will tell you to do. Frankly that is a line of crap. I have problems thinking to much, but I am working on that slowly. I used to think all cancer was the same, but I have since learned that there are many kinds of cancer that are much worse then mine. More painful, more devastating, more stressful and with many different outcomes. What I have learned is that there is a lot of people who deal with cancer differently then I do, but every person has to deal with it in the way that works best for them. Yes there is no “right” way to deal with cancer. It is a horrible disease and does terrible things to people.

Things are going ok for me right now. Yes these 5 years have had a lot of ups and downs, 4 surgeries in 4 years and now maybe another one to remove a cataract. I have pain, but who doesn’t, I get fatigued but I can deal with that, usually. I have had cancer for 5 years now, nobody knows how long it will be, but as long as I keep one step ahead I will remain above ground. That is all that matters.