As I write this, I have just received word of Daveyo's status and am deeply moved. I am also catapulted into action with renewed vigor.
I spent the past three days at the Bladder Cancer Think Tank, about which you will see more in the next few days. I was humbled and honored to be one of four bladder cancer survivors in attendance as 100 of the thought leaders in bladder cancer convened for the fifth time in as many years to mobilize against our enemy. Surgeons, oncologists, scientists, industry, the NCI, and others were all in attendance. I wish every survivor could have the privilege of seeing the passion, dedication, caring, and commitment these men and women have for our cause. We are blessed with mighty allies who grow stronger and larger each day.
I was asked to prepare some remarks for the group. Below is the text of that speech.
I have not posted much in the past about my work to move our cause forward. I am the Bladder Cancer Patient Advocate (YOUR advocate) at the Southwest Oncology Group, one of the largest of the National Cancer Institute-supported cancer clinical trials cooperative groups. SWOG's primary mission is clinical research in the prevention and cure of cancer.
I also counsel patients one on one here and through other sources (like BCAN). I mention it now as it is relevant to what you are about to read.
Know that while our battle has not yet been won, we have more traction now than ever before, and we will not be defeated.
My name is Rick Bangs, and I am a T2G3 Bladder Cancer Survivor sporting a 2006 model year neobladder. Some of you have worked with me at SWOG or the University of Michigan Bladder Cancer Support Group or BCAN, and at least one of you -- well, that I remember anyway -- has worked ON me, though at this point there have been so many hands in the cookie jar that I hope you will forgive me if I do not remember everyone by name.
Note to Dr. Montgomery and anyone else in the room who observed less than honorable conduct in Ward 5C -- we must make a pact that "what happens in Ann Arbor, STAYS in Ann Arbor."
That cancer is transformational is perhaps self-evident. One need not work in medicine to understand this fundamental and universal truth and how it applies not only to the patient, but to family and friends.
I remember talking to one of my friends from grad school after 25 years, and catching up on events in his life and in mine. He listened intently to the story of my Bladder Cancer Journey and then made this observation that I will now paraphrase: I would gladly give up the cancer, but not what it has taught me about Life and Living.
And in my case, I will add: nor many of the experiences that it has provided me.
My transformation started four years ago this very month when I noticed faint traces of blood in my urine. My journey, like 25% of my brethren, started with muscle-invasion or what I call the Fast Track. I quickly made decisions about where I would go, what I would do, and who would do it. I have no regrets about any of these decisions, and I received exceptional care.
I remember being in the waiting area outside the clinic, completing the myriad of forms that were provided. I was asked to participate in some studies being done on bladder cancer: quality of life with a neobladder versus an ileal conduit, and some tissue bank/genetic studies.
- Permission granted.
- Permission granted.
- Permission granted.
I did not think twice about participating; I would gladly have signed up for more. I vowed at that moment that "some good must come of this."
"Some good must come of this" has been my mantra, my North Star, since that time. And so I sought out the University of Michigan Bladder Cancer Support Group, not specifically because I needed support (though one can always use support and I have certainly benefited from it personally), but because I had navigated a treacherous path and wanted others to have a guide where I did not. Whether it is 2006 or 2010, the path for a bladder cancer survivor, particularly those of us T2 and higher, is scary and treacherous indeed and unfortunately not that much different from 2000 or 1995.
I also sought out experiences that would give me a better understanding of our battleground, and provide an opportunity to network with others -- all so that I might give back. I became aware of a BCAN-sponsored symposium in Cleveland, met Diane Quale, and found myself able to view one of the larger and more vexing challenges in the cancer community from a broader context.
Last fall, I was named the SWOG Bladder Cancer Patient Advocate and found incredibly rewarding work with some of the top talent doing battle against our common enemy. This and the one-on-one patient counseling that I routinely do have been some of the most rewarding work of my life.
I am every bit as thrilled to be here with each and every one of you, our best and brightest. The partnership we must forge must cross disciplines, experiences, institutions, and geographies. I am daunted by the task in front of us, but energized by the talent we have before us.
Our need . . . is clear. Our cause . . . is just. Our time . . . is now.
Edited August 8, 2010 at 8:45 pm