Friday, June 10, 2011

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!


  1. Michelle,
    Thank you again for sharing from your heart. I understand a little of what you are going through. I had some of those same feelings in the 12 years my husband had MS. He had the progressive MS so my world got smaller and smaller; it was a difficult adjustment. After he got to go "home" I discovered dancing falling hopelessly in love with it. Now I have several back problems that limit my everyday activities, not to mention dancing. I so miss couples dancing! But the Lord has allowed me to find a doctor who has helped me be able to cope better & be able to enjoy line dancing. Not like I used to, but something is better than nothing. I want to share one of my hopes in regards to you missing your new little granddarling (a friend's word that I love) - I so hope that when we all get to go "home" God will let us see videos or something like that of memories we have forgotten. But more than that of things we never saw ourselves. I'm thinking of my husband & our precious miracle granddaughters & grandson. Pat died 11 years ago. These little people arrived in just the last 3 years. It breaks my heart that they don't know each other, not even in pictures. Then I remember that God has an eternal plan that is beyond my understanding. I hurt for you because I am blessed to be able to see & hold my precious little ones. I pray for you often; I will add this hurt to my list; that the Lord will answer this request very soon! Whatever His answer is, I pray you will be blessed beyond measure with His loving care.

  2. Ugh! You sure made me cry on that one! It is so hard to be so far away from them! I moved to Boise Idaho when Hailey was only a few months old so that I could be a part of her life. Fortunately her sister followed quickly, so I was able to establish a connection with all of the girls before I moved to LA and they moved to Phoenix. My greatest disappointment in life is not being able to be close to all of my grandarlings! Love that! I wish they were once again, just down the road.
    Thank you for sharing and praying for me. It is people like you that inspire me.
    Love to you,

  3. And PS; I am so glad that you are able to enjoy some dancing. It really lifts the spirit and brings joy to your soul.

  4. Hey happy we live in the age we do and set up skype1! My parents have "known" thier grandkids in Montana this way!! When they come visit the kids are very comfortable-they "know" gma and gpa already… I have "visited" my grandson Jasper this way...He lives in Florida.
    Living with Chronic back pain and fibromyalgia give me some insight into what you are feeling as far as not being able to GO like I used to- but having the big CA is very different....that I know! Praying for your happiness and comfort today my friend:)

  5. Thanks so much Jill! I have been begging the kids to get a web cam, but to no avail. I think I shall bring one with me when I visit and show Hailey how to use it!
    Chronic anything SUCKS!


Bricks for the Brave!!