As I wrestled around New Year's eve with signing on the dotted line to commit to doing the race, I was thinking about how it may serve me in the coming year of 2012. My only way to get in to the already sold out race was to join Team Fight, which I was proud to do given the desire to support young adults and their families dealing with life threatening illness. While not cancer, my husband and I had been struggling with a life threatening neurovascular illness for close to two years and at that New Years eve, it seemed like we were not winning the battle. My husband has a dural arteriovenous fistula (DAVF) in his brain; a rare disorder which puts him at risk of stroke or death. His was large and complex and he has had countless neurosurgeries to block off some of the abnormal vessels in his brain. Unfortunately, until this fistula is totally obliterated, it recruits other vessels, so it can feel, and did feel like we were living in a science-fiction novel and were losing the battle against the aliens.
I'll get back to New Year's eve in a moment. In March of this year, we were told that the doctors could not do anything else for what may be two years and it was now a waiting game. We knew that Robin was still at risk for stroke or worse since he still had backflow drainage into the brain and the radiation he had takes years to work. We were also told that if Robin started to develop symptoms again (he previously suffered with periodic dizzy spells) that we should go to an emergency room.
If you know anything about neurosurgeons, you perhaps know that humility is not amongst their strengths. Their work requires painstaking detail and expertise... one wrong move and someone's life can be dramatically altered. As I struggled with accepting what these experts were saying, yet not wanting to accept a diagnosis that would bring disability and death to the most significant person in my life, I started researching the web for another possible answer. I found that possibility in articles that had been written about skull based surgery, and the Barrow Neurological Institute in Phoenix, Arizona. Dr. Robert Spetzler has his name on one of the grading scales used for Dural AV Fistulas, and for $100, he would examine records and images and let you know if he thought he could help. That seemed a no brainer to me (pun intended.....), so I mailed records out, and received a call shortly thereafter saying Dr. Spetzler believed that surgery could help, if not cure my husband. Hearing this felt like finding an oasis after wandering for days in a blistering, dry desert. And, that news was punctuated by the fact that Robin started to have dizzy spells again, which meant he had vessels close to rupturing.
All of this would have been enough, yet as fate would have it, my 80 year-old mother, who was living in a single family home in Boston, had a mild stroke, necessitating her being moved out of her home and into some sort of continuing care community. So, to make a long story short, I drove up the end of April, packed her up and moved her from her home; drove her here to a temporary apartment in a continuing care community, got her as settled as I could for about 6 days before I said: "see you later-- I need to go to Arizona for Robin to have major brain surgery."
What was supposed to be a one day surgery and 3-4 day hospital stay, turned into a two week hospitalization and three week stay in Phoenix. There were complications every step of the way, including blood loss requiring a staging of his craniotomy; six hours of endovascular work and radiation exposure (where they go in through an artery in the groin, thread their way all the way up to the brain, locate abnormal vessels, and insert a glue-like substance to block off the abnormal feeders, making sure that none of the glue leaks to block off normal vessels), a second craniotomy to seal off one of the major feeders, temporary psychosis and difficulty expressing himself, and the final assault which was his acquiring deep vein thromboses due to being immobile for so long. I would spend 10-12 hours/ day by his side, leaving the hospital around 10p feeling like I was walking in a fog and was only moving by putting one foot in front of the other. I had amazing support from family and friends, while I was out there and also knew that I had to force myself to exercise (swim or jog) for my mental health and to not lose the ground I had gained in my training for the race.
So, back to New Year's eve...... as I let the completed form stare at me from my computer screen for at least 24 hours before hitting the "send" button, something told me that I would need this race to serve as a positive goal for me; to help keep me fit and strong, and to help me experience and face my fears, realize my ability to overcome them and to be successful at something I previously thought was impossible. I honestly believe that my ability to disagree with what some of the most arrogant of surgical providers said was "true," and to persist in finding my own truth, which has prolonged, if not saved my husband's life, has been, in part due to my training and participation in this race. As I fantasize about the 19th and crossing the finish line, I imagine myself pausing just prior to entering the final gate and walking away. I am sure that sounds crazy, for isn't it about that final announcement of "Joy, YOU are and Iron Girl!?" And while I will probably choose to finish the race and go through the gate, that isn't what it's about for me. It's more about the journey; it's about what it has taken to endure pain and discomfort, and persevere; it's about courage; it's about asking for help; it's about being cut down to the core and putting one foot in front of the other; it's about every young adult's fight with cancer and regardless of whether they win their race for life, or die, they are winners.... they are Iron Girls, because of their strength, their courage, their commitment to ALL life has to offer. It's been about companionship, faith, laughter, tears, and spirit.
With just over one week to go, I am feeling strong and confident (despite my total panic at the open swim dress rehearsal.....). My vision of seeing my husband standing at the finish line will come true. And, as I set foot in the water, waiting for that whistle to blow at 7:04am to start my wave, I will smile with gratitude for the many blessings preparing for this race has afforded me. There will be light within the darkness of Centennial Lake; there will be friends by my feet as I push up Mt. Albert, and there will be wings of angels lifting me up as I run/ walk my way home to the finish line.