WHATEVER HAPPENS, I AM READY!
by Joe Evans
Dr. Alan Freedman diagnosed me with Polycythemia Vera in 1997. My first question to him was, “How long will I live?” Dr. Freedman told me that I will have a normal lifespan once my blood counts get under control. I did not pay much attention to anything else he said.
My wife, Bonnie, asked all the questions and did all the research. I left the treatment decisions to them. The decision was made that I would take Intron-A injections given by Bonnie. Bonnie wanted to stay away from Hydroxyurea since she had read that there was a 10% chance of leukemia in 10-12 years.
Intron-A made me miserable with flu-like symptoms even with taking Tylenol. I stuck it out for six months when I got sick and tired of being sick and tired. I’d rather take Hydroxerea and have a better quality of life. I would take my chances that in ten years I could get leukemia. My quality of life was excellent and my counts got under control. I got to a point where my plebebotomies were once every six months. On a regular basis I would ask Dr. Freedman, “How much time do I have left?’ The answer was I would have a normal lifespan.
In 1999 I started to go to church with Bonnie on a regular basis which slowly developed my faith in God that whatever happens He would guide us. Going to church helped me cope with the disease especially with Bonnie by my side being my caregiver and advocate.
In 2008, we both retired and two months later, my disease
had progressed to Myelofibrosis. I was sicker and exhausted. My quality of life started to go downhill again. I had read that I had only 3-5 years to live. Bonnie was affected more than I was since she studied the material available. Dr. Freedman had researched my options while we were in Southern Africa. He contacted Dr. Verstosvek at M D Anderson Cancer Center in Houston, Texas who recommended that I go into the Incyte (Ruxolitinib) trial. Dr Verstosvek told me that my quality of life would improve with Incyte but it would not cure the disease. I asked him that dreaded question again, “How long do I have to live?” He shrugged his shoulders and smiled. He had no idea.
Incyte was successful for me. It enabled me to travel the world for three years with Bonnie. I was living and I was enjoying myself.
On October 12, 2010, my mortality hit me hard again. It hit Bonnie even harder when I was diagnosed with Mantle Cell Lymphoma, a rare aggressive form of Non-Hodgkin’s. I was admitted to MDACC immediately since I was in great danger. It was possible that I would not be around much longer. I got great support from my family, friends and church. I knew I had to fight as hard as one could fight to save my life. My faith became stronger. My life was in God’s hands and He was directing the miracles that happen at M D Anderson Cancer Center.
There were so many inspirational moments. With Bonnie at my side, there was no way that I would not try to do everything I could to keep living. In June 2011 I was declared in remission from Mantle Cell Lymphoma. In July I was allowed back on the Incyte trial since I was through with chemotherapy.
By the grace of God I am now 69 years old. I am living my life to the fullest every extended minute with exotic travels around the world to places that were on my bucket list. I know the Mantle Cell Lymphoma will eventually come back but I will fight it until I cannot fight any more. Perhaps the Myelofibrosis will be my demise but it is not going to stop me enjoying life. The time will come when it will be all over. I am at peace with God and my life.
Whatever happens, I am ready! What a grand life I have had. I have loved and won so many times.
© Joe Evans and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Joe evans and MPNforum.com with appropriate and specific direction to the original content.