“Spreading Hope and Inspiration: One Woman’s Journey with Pancreatic Cancer”
Surviving pancreatic cancer is like walking a tightrope. In one hand, you hold the reality of this disease, the statistics and limited treatment options. In the other hand, you hold the desire to be hopeful, to believe in what could be. And then balancing the two, we have to stand on the rope and greet each new day as a gift.
I am humbled to be one of the long term survivors of pancreatic cancer. At age 44, I was a healthy, active, stay at home mother of four, with three still in grade school. In 2001, I noticed my digestion process seemed slower and somehow not normal. Lab tests were followed by an ultrasound and then an MRI, with no results. Finally, a CT scan showed a suspicious looking “spot” on my pancreas. I had pancreatic cancer. I had the Whipple procedure, which was major surgery, and fortunately the results were better than we hoped for. Still it was a long recovery as I adjusted to a “new normal.”
I participated in a clinical trial treatment that lasted six months. During that time, we had a focus: we were actively fighting the cancer. But once treatment stopped, it became a waiting game. Would the cancer return?
About a year after my surgery, I had the chance to speak to a group at our church. I came to a new realization … that this cancer journey was not mine alone… that others who loved and surrounded me were being changed for the better because of my cancer. That perspective brought me, for the first time, a sense of “peace” about my destiny, whatever it would be. In the midst of the uncertainty and fear, I felt a deep sense of gratitude. I was grateful to be a survivor.
In 2009, I accepted a volunteer leadership role with the Pancreatic Cancer Action Network to help spread the word in Minnesota about their Patient and Liaison Services (PALS) Program. I started by recruiting a handful of willing volunteers. We decided that the best way to get the word out about PALS was through physicians and their nurses. Every patient will eventually see an oncologist, and most will see a gastroenterologist, so we started by targeting those clinics and doctor’s offices. All of us were survivors or family members, so it was easy to explain how these resources could be so important to patients.
In 2010, I became the Twin Cities Affiliate Coordinator for the Pancreatic Cancer Action Network. This work has been hugely rewarding for me, as more and more people learn what we are doing and decide to join us. The organization has a goal to double the survival by the year 2020. This sounds very aggressive, but we believe it is achievable. And having a concrete focus creates hope and excitement for all of us.
We have accomplished a lot here in Minnesota that helps us toward that goal. It is amazing to me that passionate volunteers can make such an important impact. In the last eight years, our PurpleRide event alone has raised $2.5 million. This combined with our local PurpleStride Rochester, TEAMHOPE runners at Grandma’s Marathon and PurpleLight events have united our community and raised a tremendous amount of awareness and funds, totaling close to $3.0M in MN over the past 8 years.
Last year, after 11 years, I experienced a recurrence of my cancer which we are currently treating. I now know I will likely never be done with this cancer, but I know that the only thing I can control is how I respond to it and I have decided that I won’t give up. At the end of the day, I want to everyone to know that our experiences with pancreatic cancer can serve a purpose. Every experience, everyone’s journey, can bring hope and inspiration, if we all work together to make a difference.
Brenda lost her battle with pancreatic cancer on May 6, 2014. Her generosity of spirit and her unstinting service to the pancreatic cancer community over the last five years are her shining legacy.