The Genesis of The Smart Patient Academy – Jim's Story
Have you ever felt that you were out of control, lost, fearful, or intimidated in our healthcare system? Well, that was me at age 42 with a stage three cancer diagnosis – of genetic, not lifestyle origin. I had just returned from surfing in Hawaii and felt pretty healthy with minimal symptoms, so you can imagine my surprise. I vividly remember my oncologist saying, "Jim, we only have one shot to cure this. You're otherwise a very healthy person, so I'm going to hit you as hard as I can." For me, those words were like being told you only get one pitch your first time at bat, and you have to hit a home run or you die.
My treatment started quickly with chemotherapy delivery around the clock for six weeks straight with no break—not even a shower—so as not to compromise the chemo-port in my clavicle. To that they added 26 rounds (a lifetime dose) of radiation to three locations in my hip area as I was held in place like a rotisserie chicken week after week. At the end of the 26 doses, I couldn't even walk. They then performed surgery, pulling out 22 lymph nodes that had been so destroyed by chemo and radiation that they couldn't determine the degree of cancer that had spread throughout my body. Just to play it safe, all five doctors agreed that it was best to simply assume the cancer was everywhere, and so they ordered more chemo for the remainder of the year. Again, this was akin to running a marathon of suffering, only to reach a finish line that turned out to be a cruel mirage.
Maybe some of you have taken a deep dive into a medical situation like this, where it's easy to see the two opposing faces of the healthcare system. While individual providers like doctors and nurses can be empathetic and caring, the system—or the rules and bureaucracy in which they operate—can be downright hostile and dangerous. So it's a pretty confusing place to be, even for someone who has spent nearly two decades as a health insurance expert. I was simply unprepared to manage the gaps in care, miscommunication, and high error rates, not to mention the intimidating complexity, egos, and unsustainable costs. In short, it seems to be a system that's about everyone but the patient. What's worse is that we "patients" are in a system that demands passivity. A good patient is a passive patient, and passive patients don't challenge care, doctors, or cost. I'm sure you realize this is a lethal combination.
I remember thinking to myself how ironic it was that my biggest fear in life had always been cancer and the prospect of being on chemo. I watched many of my parents' friends die from it, as well as my father who died in my arms, and I was never really sure if it was the cancer or the chemo that had killed him. Bear in mind that I have jumped out of planes, climbed dangerous mountains, and been in combat zones, but all of these situations paled in comparison to the fear I had going into the world of cancer and chemotherapy. It was a total loss of control, self-image, and confidence. The disease brought me down to the deepest levels of crisis and despair.
I recall my last day on chemo at the end of that year, sitting in the "infusion chair" with my Livestrong bracelet and a bank of TVs in front of me. Sitting next to me was the only other person in the room, a 14-year-old girl curled up in her chair under a blanket, motionless and quiet. We said nothing to each other at first, suffering in silence. Then three or four nurses came into the room to congratulate me for finally making it through my long year of suffering. The young girl turned to me after they left and said, "I'm so happy for you. Congratulations. You should feel proud for making it." A bit embarrassed, I thanked her and asked how long she had to go. "I really don't know how long I'll be on chemo," she said. "This is my second year like this. But you know what? I'm so grateful that this year I'll be able to hold my head up to watch the football games tomorrow on Thanksgiving. Last year I couldn't."
This girl was ten floors lower than I was, unlikely to survive, but grateful for what she had. She was braver, more humble, and more connected to what is important in life than I can ever hope to be. Even more, she had broken out of the box the healthcare system placed her in, ceasing to bring her down. It was a light-bulb moment for me. I realized just how lucky and blessed I really was. I got to walk out. She probably never would.
I remember my Thanksgiving Day Girl well, but I never saw her again. I thanked her and tried to say some encouraging words without crying. I don't think I did a good job. I thanked all the nurses for being so supportive during the year, and I hugged my wife who had slipped in to pick me up just as this scene concluded. As I left the building, I cried – a lot. But when I got to the car, I decided to sit in the driver's seat. I thought that if my young friend could hold her head up, I could certainly drive myself home.
The Playbook is the second of several knowledge products produced by the Academy and a critical tool to becoming a high performing patient or caregiver. I know my Thanksgiving Day Girl would approve.