Tuesday, May 3, 2011

The Face of Leukemia

There is a lot more drama implied in the title of this post than probably is in real life.  Also Nicole will probably be less than thrilled by my selection of photos.  I just figured out I don't take enough pictures of my oldest child.
My daughter Nicole has chronic Myeloid Leukemia (CML).  I am not in denial about this.  You can't deny leukemia, but in my typical fashion I have been very good an avoiding thinking about it.  I tried to read about the disease when she was first diagnosed but it was too upsetting.  I left all the research to Nicole who  handled it very well and let her tell me what I wanted or usually needed to know.  She has had her disease for over six years.  What prompted me to write about it today is the fact that the May Smithsonian magazine has a story about the research and testing that got the drug Gleevec on the market. I read the story all the way through.  I learned things and I didn't get upset.  I may have passed a milestone.
Someone told me once, "When you have cancer, everyone around you has cancer as well." It is the truth, you cannot have any form of this disease without your whole family becoming involved.  So this story isn't about how Nicole lives with CML  It is about how I live with Nicole's CML
Nicole was diagnosed because she was pregnant with our first grandchild.  None of us understood why she was being referred to an oncologist.  The lack of understanding must be common because the doctor had to walk us through to the probability that this was why we were there.  The doctor did the tests and we had to wait a life time, actually only a week, for the results.  During that time I prayed  and prayed. 
We all went back to the doctor and got the news, she had CML. That was the time I understood what it meant to die inside.  Nicole had leukemia, she was going to die.  BUT WAIT! Just like the commercials there was more.  There was a new drug, it had only been on the market for four years but it was successful against CML.  There was also the possibility of a stem cell transplant if a good donor was available.  Never the less, I went back to my job and cried for the rest of the day.  I was having to get past the idea that leukemia was a death sentence.
I guess I should also mention that CML is a totally random cancer.  You don't get it from lifestyle or exposure to something.  CML happens because your chromosomes split and two of them change places and go together wrong.  I know that is a simplification but it works for me.
Over time a lot of good things happened.  Nicole's CML was in the early stages so she was able to take her pregnancy to delivery.  We are blessed by Wyatt in our life.  She was able to wait a few months after he was born before going on Gleevec.  Gleevec suppresses the chromosomal abnormal activity and her CML is in remission as long as she takes her pill a day.  After three years, she was able to go off the drug to have our grand daughter Andrea.  Another blessing.  The drug makes her nauseous, not all be time but often enough.  I think she may have a bit less energy that other women her age.  But that can be having two small children as well. 
Another blessing is that her brother Andrew is a match in case a stem cell transplant ever becomes a necessity.  We were told that a sibling match that weren't identical twins is extremely rare.
So for the most part we live our lives just like CML isn't always with us.  The research that created this drug Gleevec was ground breaking in that it was the first drug tailored to deal with a specific behavior of a specific cancer.  The researchers are continuing to work on new generations of drugs to handle the fact that certain patients develop resistance to the drug. 
My only worry is that the projected life span of a CML patient on Gleevec is 30 years.  That isn't long enough.  But I have to believe that if the Doctors have come this far, there will be more years than that for Nicole and other CML patients.
Read the article.  It gives you hope. I also want to say that my prayers were answered.


CK Photo said...

many good thoughts and prayers going out to you and your family

aimee said...

lynette, your writing gave me goosebumps. i think you and your family are handling everything just the way you're supposed to. many hugs and good thoughts to you guys. you're lucky to have each other!

Uncool Mom said...

Hey Mom, next time you want to do a mini biography maybe I should provide you with better photos than the Dora the Explorer one. I love you so much, thank you for all your support.

a chick named Toni... said...

God gives you all the strength that you need to get through something like this. You have all done well.