All families have shared stories that are passed down over the years. They are often endearing tales of resilience, camaraderie, tradition, or other staples of family lore. Think Amy Tan’s Joy Luck Club. In my family one of my favorite stories is of my great great grandmother who purchased a beautiful hutch hand crafted out of oak. It stood just over six feet tall and was half as wide. She did not have a vehicle when she arrived in this country in 1908, not a huge surprise since Ford didn’t become a household name until the twenties unless you were more affluent. However, she was determined to find the means to bring the hutch up one of the steeper hills in the Polish section of town and acquired a wheelbarrow with which she carted her beloved hutch up the hill in. Sheer determination and blind stubbornness attributed to the success of this particular mission. I have always loved that story and have heard it told by my Babci (my maternal great grandmother), my Dziadziu (my grandfather) and my mother. I always felt comforted knowing that my stubbornness was inherited by the likes of this strong willed Polish woman. My family and friends frequently comment on my stubborn nature and up until this point, I believe it has served me well.
Today I went to Boston to have my options presented to me, regarding my next steps in my cancer journey. Now in reality, my options were already presented to me informally, but my stubborn nature refused to accept them. I wanted options that I could live with, options that seemed less drastic, less severe, less daunting. I dug my heels in for as long as possible, delaying a decision until these options were laid out on the table. And today they were. As it turns out I have no options. I can not do the transplant and accept that my cancer will be fatal to me within the next one to three years definitively or I can have an allogenic transplant with no guarantees. I crave certainty in life and prefer well laid out plans. I have a multitude of planners to prove it. So the part about not having guarantees does not sit well with me. What they know is that people in my situation (post checkpoint inhibitors like PD1) have a 20% mortality rate, 30% success rate, and 73% non relapse rate after a year if you survive (which is significantly higher than traditional allogenic transplants). Thus if I have a transplant and survive the process, I may live eighty four years (the transplant specialist’s number, not mine) versus not seeing forty. Therefore, I have no real option. I have to choose life….despite that it is not guaranteed nor is the quality of the one I am left with. I want more than anything to be stubborn in this moment and hold out, rather than face the uncertain terms of death, graph versus host disease, or any other slew of potential complications, but I can’t. I owe it to myself, to Josh, to my parents to at the very least try. As my dad said, you have to let it go and have faith in God… on a wing and a prayer. And I have faith, I do. But the thought of signing on a dotted line to proceed with a plan that could kill me is difficult to swallow.
Earlier this week, when having a conversation similar to this one with my local oncologist, Josh got upset. He hadn’t realized that we were potentially talking about my being able to maintain as I am right now for a matter months rather than years. We both think maybe he realized, but either chose not hear it or accept it as reality. I commented to him that it was okay that he was upset and that it was just that his dreams die slower than mine. And he replied that no person should be able to say that with conviction and yet I did. However, tonight I sit here with tears streaming down my face wishing my own dreams would stop being stubborn and just let me accept what I have to do, without feeling like I am going to have to forfeit the life I always envisioned for myself. The adage that “expectation is the root of all heartache” is very real. Shakespeare’s tragedies repeatedly prove his words. I have to move forward with this decision to choose life, all the while accepting that I am choosing a life that may not be the one I expected.
What I do know is that I will use my strong stock and stubbornness to fight and rid my life of Hodge all together (hopefully). And besides it will make one hell of a story to pass down!
(A story that I will have time to write when I am forced into a version of solitary confinement for at least a year.)