Becoming the Patient from Hell (Part 1)
One of my companion through this nutty journey has been Stephen Schneider. Stephen was a Professor of Environmental Biology and Global Change at Stanford University. He passed away long before I'd ever had a chance to meet him. Amongst other things, he was a survivor of an aggressive cancer - mantle cell lymphoma. His documented journey through this condition culminated in a book called The Patient from Hell.
Stephen, of course, can't know this, but his book stood by me in ways he likely didn't imagine. He captures his experiences with being treated as a patient in a system designed to treat patients in cohorts. Science and medicine has been innumerable strides over the past decades improving and enhancing the treatment available to patients.
Cancer still defies the odds. Oncologists will tell you that each cancer patient is unique. They respond in ways you don't anticipate. Yet, our treatment plans are far from being personalized. They are not tailored to the individual. We don't treat patients based on the empiric data of that patient's journey.
Stephen anchored me early in my journey as a patient. He reminded me that despite losing control over our lives, we did in fact have a choice. Our oncologists, surgeons, radiologists were living lives in accordance with their training and what the system allows. It was our job to ask questions, to probe, to inquire, and to ensure that we understood the path ahead. If that meant we spent more time on the phone advocating with the insurance company, or the nurse or the pathologist, so be it.
Over the last many months, I am certain that I have driven my care team a little nutty. They have been patient with me, and for that I am eternally grateful. Over the next few blog posts, I'll share how Stephen set the foundations for me to be comfortable with being a patient from hell.