Living with Leukemia (CML)

I think that the biggest challenge in learning to live with a chronic cancer is adapting to the limitations to your everyday life.  Throughout most of my life I have been very, very healthy. With the exception of one other health scare, I just never got sick. I do believe that previous sentence is what led me astray in my previous posts.

In my mind I was comparing the two diseases. The first being ovarian tumors, the second CML. The first illness (ovarian tumors) required a very intensive surgery; removing body parts. After recovering from the surgery, the only follow up was frequent checkups and CAT scans; no lingering effects.  The second required chemotherapy, to destroy the cancerous cells and leukapheresis to remove them. The aftermath of this disease is that you must continue to treat it and learn to live with it. The first disease could be removed; the second remains; it continues to flow throughout your body, every day. You carry it with you wherever you go.

Living with chronic myelogenous leukemia takes some getting used to. I am beginning to realize that my super-charged, previous haphazard lifestyle no longer exists. I cannot make “plans” and always expect to be able to carry them out. I must accept the fact that my life now revolves around blood tests, doctors and medication side effects. I do not dwell on these things but they are apparent every day in one way or another.

Whatever I decide to do must be decided on a day to day basis. The most evident reminder of this issue is the fact that I was unable to attend the birth of my newest grandchild. I was sick when he was born; and am still sick three weeks later. It just hurts my heart to have not yet met him and been able to hold him in my arms. I was present for the birth of my other four grandchildren and am saddened that I was not there when he was born. He is already over three weeks old and doesn’t even know that I exist. Between me being sick and them being sick, I have had to settle for pictures. This totally sucks!

Other constant reminders are all of the Wednesday night dances that I have missed. I know that may not seem like a big deal to you, but it is to me! I mean come on; it is only four and a half hours a week. You would think that that would not be too much to ask. I am amazed at how many practices and dances that I have been unable to attend.

Some days I am even too exhausted to do a load of laundry, I buy flowers with intent of planting them and they sit in their containers’ for weeks. The paint that I bought last year is still in the can, my closet is an upside down mess and my website has been neglected. I haven’t been able to visit my family and often fall asleep watching a movie. I feel as though I have aged 20 years in the blink of an eye.

I long for the days when I could make plans and keep them; wake up and be ready and raring to go. I want to look into the mirror and see the girl that used to have color in her face and more hair on her head. I want to feel energetic and exuberant. I want what I used to have and now know that I should have cherished it more. I suppose that this is typical during all phases of life; when you are a small child you want to be a teenager, a teenager wants to be an adult, an adult wants to be a kid. If we are not careful, we will spend our entire lives wishing them away.

Despite the fact that I now have leukemia, I intend to make the most of every day and to “do” when I can; and allow myself to take it easy when I can’t.  Eventually my body will adjust to the Sprycel (Dasatinib) and I will regain some stability and strength. I am confident that in time these adjustments will become easier and I shall learn to cherish my new journey and stop mourning my old life. I guess I am just sick and tired of being sick and tired!