I live in Hawaii, have lived here for 50 years. I surf in the winter , swim in the summer and try to spend as much time in the ocean as possible. I have been part of a spiritually-oriented hospice here in the Islands for 31 years. Hospice is my heart’s work.
This blog came about because I walked down the long and winding colon cancer road with my beloved husband for 4 years. He died in April 2009, here in the home he built for us, with me by his side. Unlike other blogs, this is not about my feelings (though they will inevitably creep in), nor is it an attempt to cover the nuts and bolts of colon cancer. There are plenty of books and blogs and webpages on those topics. Rather, it is about extracting the many lessons we learned along the way, those that can only be learned through hard experience– the things your doctor or pharmacist doesn’t tell you, how we made the system work for us, side effects that aren’t on any labels, cutting-edge treatments that gave us precious extra months of quality time.
Though gut-wrenchingly painful at times, our journey was extraordinary in that it was illuminated by such profound kindness from the doctors and nurses whom we forged into our team. Our relationship with them came to be one of deep mutual respect — albeit with some notable exceptions. I should note that this wasn’t our goal to begin with; it was a side effect that grew out of our fierce determination to get what we needed out of our medical system coupled with my new understanding that I was signing on as a full-time medical researcher.
This blog is for all present and future colon cancer patients and their families. May you learn from our experience. May you be free from suffering.