Surreal

-adjective; having the disorienting, hallucinatory quality of a dream; unreal.


That pretty much sums up how I feel about where we are right now. Each day I wake up and think, this just can't be real. First, for Meagan to have any disease, then to have one which is so problematic. The problem for a problem-solving guy is there is no logical, predictable path to a cure. Unlike other diseases such as breast cancer, where after a hard journey through surgery, chemotherapy and radiation the outcomes are predictably quite good for 95% of women, this disease has an uncertain outcome and an unpredictable treatment protocol. Or vice versa.



It's that uncertainty which is so disconcerting. We talk about Meagan having to adopt the ninja warrior princess stance and have a solid foundation; being able to bend and adjust as needed. It's the same for the cabana boy.  Each day I want to be positive and optimistic and provide the kind of energy and certainty needed for her to keep her attitude up and her outlook positive. Each day brings new challenges with diagnoses, discoveries, scan results, internet revelations and doctor recommendations. As each month goes by the set of options diminishes in some ways (those treatment protocols best understood today) and increases in others (what new clinical trials are available which would be a match). I found myself daydreaming the other day about the old Kung Fu series with David Carradine and the cryptic phrases he would give and how you must "flow like water", or "bend like the willow in the storm". Cliche's yes, but coping strategies for one's mind when you are faced with such uncertainty and needing to feeling grounded, while engaged in a long and fluctuating battle.