Living inside a clinical trial is a journey of peaks and potholes. Peaks are easy. The highest is waking up alive. Potholes litter the path too, and they are usually annoyances or inconveniences. When they occur, I try to remember what G. K. Chesterton said, "An inconvenience is an adventure wrongly considered."
The busy ER provided one such recent adventure. Sick babies, strokes, motor vehicle accidents, and traumas from a nearby tornado-hit to a motor-home park filled the nooks and crannies of a small town in southwestern Missouri in January. When CODE BLUE was announced overhead, my first impulse was to rush to Room 214 and save the day. Then I remembered I hadn’t saved anyone’s day for eighteen months when metastatic leiomyosarcoma caused me to leave my beloved internal medicine practice. I was in the ER, not as a physician, but as a cancer patient whose oncologist had referred for evaluation of a suspected deep vein thrombosis (DVT). My port used for chemo was inflamed and tender. After twelve hours of waiting for the true emergencies to be seen, I was told the Doppler was negative and released.
The deepest pothole in my journey came with the news that, without chemo, I had less than a year to live. My options included several unappealing traditional chemo regimen and ET-743, a promising drug available only via clinical trial in limited supply in only a few sites across the country. Through the intervention of my oncology team, I was referred to another center for consideration of an expanded-access clinical trial. Five months into my clinical trial, I am filled with hope. My CT scans have demonstrated no progression of metastatic disease. Stable disease is considered a response.
Gratitude continues to be a constant companion that I have been given this chance to participate in this drug trial. Every day I live breeds hope that I will survive to benefit from advances in research that may bring more definitive treatment. In between the peaks of gratitude and hope exists the reality of traveling six hundred miles round trip for a 24-hour infusion of chemo every twenty-one days. Although my physical side effects are limited to annoying potholes of nausea, gastroesophageal reflux, constipation, anorexia, and fatigue, my mind and soul suffer more limiting blows. A life-suffocating fatigue breeds a mental paralysis that dulls my ability to experience pleasure, animation, or hope.
Fortunately, this paralyzing inertia lasts for only a week or so of the cycle. This shadow-self is transient and precedes a rebirth of desire, joy, and hope. During these peaks I have enjoyed traveling to the Rocky Mountains, Greece, Grand Cayman, and spending more time with my family. There is nothing like the loss of vitality to make its return a cause for uninhibited celebration. Life is a gift. It is precious beyond description. I will be forever grateful for those who continue to do cancer research and champion the cause of those like me who depend on the kindness of strangers for our very life.