"Life is an adventure. I always knew that and lived accordingly. I have been pretty lucky. And man, that adventure sure took a turn in the road in November 2003. And that came with a diagnosis of Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (CLL/SLL). And an early morning ride in an ambulance to the UCSF Emergency Room. That is how I came to UCSF. My initial treatment began only a few weeks before in a hospital across the San Francisco bay.  It became quite clear to me in that early morning hour that I needed to be in treatment somewhere closer to home. In those first days I was also diagnosed with an assortment of other blood immune system disorders which included my immune system destroying my red blood cells and then my body ceasing to produce any red blood cells. I had many many transfusions and chemo therapy in those days. Then I morphed into a blood disorder called Myelodisplastic Syndrome, which is a precursor to complete bone marrow failure. That diagnosis put me on the road to a Bone Marrow Transplant. I received my new marrow two years to the day from when I got the news about having Leukemia. November 19th  will always be remembered as the date my life changed and as my new birthday.

A Bone Marrow Transplant is only the beginning. It is a commitment for life. It has been a bit of a rocky road. I have had surgeries, two Lymphomas due to the treatments that I have been on and multipal bone fractures from some of the medicines I am on. I have  learned a whole new language and medical science specializing in me. I have had to learn how to navigate in a huge medical system. The Leukemia Lymphoma Society has been so helpful with information and guidance and links to other organizations. I have been an anomaly and have kept my team of doctors on their toes trying figure me out. I have a great team of doctors and nurses. They have kept me alive. Over the years I have come to feel that they are friends. We work together. I work at it every day. I truly believe that I would not be here today if it were not for all the support and help of friends. I am six years down the road and I am not out of the woods yet. I am feeling better and doing better than I have in years.  Grateful for every day!

 

My mantra has been to "just keep moving". As long as I can move and breath I am alive. I have a great life. I do not think I would have chosen this path. But I surely would not give it up for anything in the world. The adventure continues."

 

-Karen Koltonow