Well it’s official. The day I never thought possible is here. I’ve reached a decade of living with Stage IV RCC (Kidney Cancer). The difficult treatments that have made this possible, will continue until they stop working or a cure is found. When I was diagnosed, surviving this long was virtually unheard of. Back then we hoped that I’d live for two years.
On February 22, 2007 around 4:00PM, my wife and I sat shattered and numb in my primary care physician’s office. Our world had just imploded and would never be the same again. Everyone reading this has entered that same black hole. But as hopeless as the situation was on that day, somehow I’m still here. I know that could change tomorrow, so I choose to focus on the present.
Naturally I’m happy to be alive, but oddly I’m not excited. As this day got closer, I’ve been reflecting on the physical struggle and medical expertise that has kept me alive. I’m also thinking of the many heroic friends who are no longer with us. They and their loved ones are never far from my thoughts. I dealt with survivor’s guilt for a long time. So rather than excitement today, I’m simply feeling thankful and grateful for the miracle of life.
The treatment landscape for RCC has changed exponentially in the last ten years. I can only imagine what the next decade will bring. My advice to anyone newly diagnosed, but especially with Stage IV, is to find an RCC specialist to lead your medical team. This is a unique cancer that requires training, knowledge and experience, that most general oncologists don’t have. Become your own strongest advocate. Look deep inside to find your untapped strength. Always talk openly with family, friends and your medical team. Learn as much as you can about this disease and its treatment options, but only from reputable sources. There’s a lot of outdated info out there, so join Smart Patients and let us help guide you! My doctor loves having informed patients who can contribute to their care plans. Try to think positive, even when it seems ridiculous. I’m Living Proof of that.
I give tremendous thanks and credit to the sensational Mary T, for helping prolong my life. She’s my love, my rock, my best friend and main reason I keep pushing. In May we will be celebrate 40 years of marriage. With my Sutent induced pure white hair and beard, I enjoy being mistaken as her much older sugar daddy… even though I’m really six months younger! Mary sees things no one else does and supports me in every possible way. She’s the only person who truly knows what we have endured together in the last 10 years. Thanks also to our kids, their spouses and our six beautiful grandchildren. They were all born after my diagnosis and are true blessings for our family. We also thank our great friends who accepted the new rhythm of our relationships, now dictated by my treatment schedules.
Not to diminish the role of family and friends, but I wouldn’t be alive today without my doctor Toni Choueiri He and his colleagues at The Dana-Farber Cancer Institute have always impressed us with their brilliance, compassion and humility. Dr. C never lets me give up on myself, even when I’ve wanted to. His relentless passion for his patients, his research and his quest to understand everything possible about RCC, is awe inspiring. He’s the most incredible human I’ve ever met. I’m proud to call him my friend, as well as my doctor. He will always be part of our family and our history. I know that when a cure is found, he will be involved. Probably with a cross functional, multi-institution team of experts, who collaborate to finally conquer kidney cancer.
I also attribute much of my prolonged survival to Gilles Frydman and Robin Martinez from Smart Patients. Gilles’ vision to create the original ACOR online communities – which eventually grew into Smart Patients, filled a much needed void of information for patients. The solid guidance I received from other members was the lifeline I’d been searching for. Robin Martinez, who has been a kidney cancer patient advocate for decades, is the human equivalent of IBM’s Watson computer. Her knowledge of RCC is vast and continues to grow. The group helped me begin to believe that I might be able to live with cancer as a chronic illness. Robin and Gilles could have easily walked away from this world of cancer, but they chose to stay and impact thousands of lives instead. We are all indebted to them both.
Every kidney cancer patient I’ve met through Smart Patients has taught me something about being human first and a cancer patient second. Thank you all. I will always try to pay it forward by offering hope, advice or a shoulder to lean on, for whoever needs it.
Yes our world was shattered and changed ten years ago. But looking back, there were some good and rewarding things that managed to emerge from that black hole. We learned to cherish each moment, take nothing for granted, prioritize the positive, push through the tough times and meet so many incredible people that we wouldn’t have otherwise met.
