On February 1st, someone from PMH called me with the news that a donor had been identified. The donor was what they called a “9/10 mismatch”. I asked whether a 10/10 matched donor could be found for me, but was told that it was unlikely. I hung up the phone and just sat there. I had no idea what to make of the news. I was supposed to be happy and jumping for joy, as I had found my match and would head to transplant to save my life. Why, then, was I so devastated?
I was devastated because I knew that the statistics for survival after a transplant were not good. Of course, I googled the medical literature to see for sure what I was up against. Unfortunately, I was right; study after study indicated less than 50% survival, and even if a patient survived, quality of life could be horrible.
Faced with these grim statistics, I thought to myself, “Maybe I don’t need to go to transplant. I’m on Gleevec right now and am feeling great. I can go to the hospital for doctors’ appointments, go shopping, run errands, go for lunch or dinner with my friends and family. Why risk everything by going to transplant???” I was truly in the illusion of remission.
I reached out to EVERYONE that I thought could help me. I had to determine if I absolutely needed to go to transplant, considering I was in such wonderful remission with Gleevec. I went to a CML forum to post my question, I asked my parish priest for guidance, I contacted the CML Society of Canada, I contacted CML experts in the US for their opinions, and I reached out to transplant survivors for their thoughts. All were very helpful in their own ways. Of course, I also read many studies, which seemed to say that in my situation (i.e., accelerated phase), I could expect Gleevec to work for 2 – 4 years.
So, for 2 weeks after I received the news of a potential donor, I struggled with the dilemma of going to transplant vs. staying on Gleevec. On the one hand, I could be “cured” with a transplant, IF I survived the procedure and have no debilitating after-effects. On the other hand, I could have a relatively normal life for a few more good years on Gleevec. I was truly caught between the devil and the deep blue sea. There was just no way that I could make such a big decision about my life, so I decided to let go and leave it up to God.
And surely, God intervened. Dr. Yee knew that I was having doubts about going to transplant, so she had me see Dr. Lipton, a Canadian CML expert at PMH and my first doctor at PMH. After hearing my pros and cons about going to transplant vs. staying on Gleevec, Dr. Lipton told me to revisit the definition of “blast crisis”. He said that I had 26% blasts in my peripheral blood on October 16, 2012, and had 13 – 16% blasts in my bone marrow on October 18, 2012. The World Health Organization’s definition of blast crisis is >20% blasts in EITHER blood OR marrow. My heart sank to the floor. What he was trying to tell me was that I was in blast crisis, not accelerated phase. The definition is one that is “either…or”. I had always thought that while I presented in blast crisis, that my subsequent marrow was more determinative of my phase of disease as it was a more sensitive test. How wrong I was. Of course, that realization would change everything.
Because I was in blast crisis, Gleevec is expected to work for only a few months. And I’ve already been on it for 4 months! Dr. Lipton said that my window to go to transplant is NOW, while I am still in remission. He also said that if I chose not to go to transplant, my only other option would be palliative care, and he thought I was too young to go to palliative care. He also said that my chances for survival were closer to 40% (he thought 50% was “optimistic”).
As you can imagine, the days after my talk with Dr. Lipton were extremely dark for me. Although I must admit, I was somewhat relieved that God helped me decide what road I had to take. After a few days of being down in the dumps, I knew that if I was to make it through this, I’d have to get up and stay strong and positive. Like my sister says, “Slap that (CML) bitch in the face!” I wholly intend to adopt this attitude as I fight for my life.
As soon as I’ve gathered up enough strength, I will give PMH my official “go ahead” to start the ball rolling. They tell me it will be approximately 4 – 8 weeks after my official go ahead before I am admitted to hospital. The hospital stay should be for about 4 – 6 weeks, but it really depends on how I do. I will most definitely post more details about timelines, etc. in future posts.
For now, I pray that my 9/10 donor will continue to be available for my transplant and that Gleevec will hold me over until my transplant. Please pray for me. Thank you.