The Pancreatic Cancer Action Network calls on the public to Wage Hope during National Pancreatic Cancer Awareness Month in November.
PANCREATIC CANCER ACTION NETWORK BLOG
I will never forget the phone call that warm, May evening in 2007. Her voice wasn’t right. There was something on her pancreas. She wanted me to research painless jaundice. She knew that pancreatic cancer was one of the “baddies.” I had never heard my mother so scared before.
My mother, Nancy Shughart, was a superhero. She was widowed at 32, left alone to raise three children. My sisters were three and two; I was 11 months. Years later, when I found myself the mother of three children under four years old, I knew without a doubt that my mother was a superhero!
I did my research. Fifteen-plus years in the news business had taught me how to research. I didn’t like what I found, or what her doctors were telling us. We learned of a surgeon, Dr. John Cameron at Johns Hopkins, who had performed more Whipple procedures than anyone in the world. That’s our guy, I said. You’ll never get in, they said. My superhero mother had always been my strongest advocate. It was my turn to be hers. We won’t get in? Watch me.
Dr. Cameron’s surgery was successful, and we looked forward to many years with Mom. In October 2007, I participated in my first 5K for the Pancreatic Cancer Action Network. I’d discovered the organization during my research, and our family had benefited from the PALS Program. It was the inaugural 5K for the Central Florida Affiliate. I remember calling Mom to tell her that I actually finished the 5K without tripping or passing out. She laughed, then cried when I told her about the money I raised, and all of the people who donated in her honor. It was a special day. I decided at that moment that my involvement with this organization wouldn’t end with a race t-shirt.
You see, when you’re several states away from your loved one it’s easy to feel useless. It’s easy to feel helpless. There were things I couldn’t do for her, but I could do this: I could work to help others facing this beast. I could do this. Watch me.
My mom’s valiant fight ended on March 19, 2009. I thought it would be too painful to volunteer, and it can be. At these times I remember what Mom said when we were discussing clinical trials: if she could help someone down the line she’d do it. By volunteering I’m helping others Wage Hope against this disease. I’ll do it, Mom. Watch me.
With my television news background, the Media Relations core role was a perfect fit. I knew I was in a unique position to extend our message in the Central Florida area. I had some success, but I wanted to do something more. The aha moment came at 3 a.m. one Friday in February. Our morning meteorologist thanked one of the anchors for reminding her to wear red. Another anchor put a small red dress pin on his lapel, near his red tie. I watched as our anchors, our competitors’ anchors, and the network morning show anchors wore red. The answer was right there. My goal was to see purple on the air that November. While I didn’t openly admit it, my ultimate goal was to make this a national event. Could I do it? I thought of Mom. Watch me.
In November 2010, after months of brainstorming, I added information about Purple with a Purpose to my PurpleStride press kit. While I was happy with the response, I knew I’d have to do more the next year. The key was social media. In 2011, I focused on Twitter to engage the on-air talent, and recruited our affiliate volunteers to tweet them as well. It worked; we had greater participation, more on-air mentions of PurpleStride and Pancreatic Cancer Awareness Month, and several anchors and news stations were following US on Twitter! By 2012, I knew we were in the midst of a movement. There were “Twitter Throwdowns” between rival news teams who embraced our cause and posted pictures of their anchors and reporters wearing purple. Affiliates across the country promoted Purple with a Purpose with great success. What we didn’t have was George Stephanopoulos and Matt Lauer wearing purple ties. We didn’t have them… yet.
On Friday, November 22, 2013, after an extraordinary effort by our national team and Media Relations Chairs across the country, the airwaves from Orlando to Seattle were purple. At 7:00 a.m. Eastern Time, I held my breath. There they were. Matt and George and all of the anchors on all of the morning shows were wearing purple. More importantly, they said they were wearing Purple with a Purpose, and that the purpose was pancreatic cancer awareness. I cried. I thought of my Mom and whispered, “We did it.”
We still have work to do. We’ve had a slight name change, we’ll now wear Purple for a Purpose, but our mission remains the same: we need to raise awareness and Wage Hope. We’ll not only wear purple, we’ll tell people WHY we’re wearing it. We’re going to make sure that if you see someone wearing purple ribbons in November, you’ll know WHY they’re wearing them. Think we can’t do it? Watch us.
Honor, inspire, remember and raise awareness at our October PurpleLight events, and read about other important happenings.
Now published in Cancer Research: a Pancreatic Cancer Action Network study predicting that pancreatic cancer will be the second leading cause of cancer-related death around 2020. Learn more.
We are excited to have received Celgene’s 2014 Innovative Impact Award for our Know Your Tumor initiative, which is under development. More information will be shared when the program is widely available. Learn more.
The Pancreatic Cancer Action Network will award $4.1 million in research funding through its 2015 Grants Program. Applications are now being accepted for most grants. Learn more.
CLINICAL TRIAL NEWS: MM-398 combined with standard chemotherapy boosts overall survival by nearly 2 months in patients previously treated with gemcitabine. Learn more.
Sixteen grants totaling more than $5.1 million have been awarded to scientists and clinicians across the country this year. Learn more.
This is why I am fighting to advance research for pancreatic cancer……
My father, Minus John Leleaux, went to his dermatologist for what he thought might be an ingrown hair on his face. Daddy was concerned because the “lumps” were starting to come out on his head too. It was Memorial Day 2010 and the dermatologist called my father with biopsy results. He told him to come in on Monday with a bag packed ready to be admitted for additional tests.
Then the “C” word was said for the first time. The biopsy tested positive for adenocarcinoma of the skin. I think my father thought that he had actually been given an early warning to something going on inside of his body, but on June 7th our life changed forever. A scan showed innumerable tumor cells involving his liver, stomach, right shoulder, with the primary tumor cells in his pancreas. My father had Stage 4 Metastatic Pancreatic Cancer. The cancer had metastasized to his skin. The doctor said he had never seen a case like this.
My father was a Navy man and fought a hard fight, but on August 11, 2010 my father died.
My father was also one of the most generous and giving men you could ever hope to meet. If you came to visit his house, you never left empty-handed. He didn’t have much growing up but he always had that giving spirit. He taught us that there will always be a need somewhere, and every person has something to give.
The November after he passed, I made the decision to continue my father’s fight. I am now a volunteer with the Pancreatic Cancer Action Network as the Community Representative for Paducah, Kentucky.
What really motivates me is connecting with other volunteers. When I started I had no clue what I was doing, but being around volunteers, seeing people who lost loved ones make something positive about something so sad, I knew I wanted to do the same. I also love seeing the difference I am making. I went to Washington, DC to tell my story and I helped pass the bill (The Recalcitrant Cancer Research Act). I know I made a difference. My father’s story has made a difference.
It doesn’t take a whole lot. You can start out by doing a little bit. For me, it was almost like a flame that became a fire. In the beginning it was, “Well I can do this much,” and then I did it, and spent time around other volunteers and it was all fuel for the flames and the fire just grew and I wanted to do even more. I know that my efforts will not bring my daddy back, but I know that he would be honored to know that I am fighting this fight for him so that his grandchildren and great-grandchildren will not have to know pancreatic cancer. My father’s name was Minus – a rather unusual name. I see it as a legacy. Like my brother David says, “We will fight for a cure and someday we will have a world ‘Minus’ pancreatic cancer.”
In the fall of 2004, a local doctor told Ralph Cheney he had an “undiagnosed obstruction” in the tail of his pancreas after two bouts of pancreatitis. Local doctors wanted to wait and re-scan in six months. His wife Mariann said, “No way.” The couple went to a major center in New York with expertise in pancreas cancer. There, a gastroenterologist known for his skill in performing Endoscopic Ultrasounds told them he could not reach the tumor but had a hunch that it was cancer. Several months later in January 2005, Ralph had a distal pancreatectomy and spleenectomy and was diagnosed with ductal adenocarcinoma, Stage III.
After the devastating loss of Mariann’s sister to cancer in 1997 and then her sister’s husband Jim in early 2005, Mariann and Ralph made a commitment to each other that they were going to beat this disease and make sure that they were transparent about sharing their journey with everyone they came in contact with. According to Mariann, “It’s important that people know it’s possible to live happy and joyously even though there is a 500 pound gorilla in the living room.”
Right after Ralph’s surgery, the couple connected with the Pancreatic Cancer Action Network. Ralph was matched with a survivor to speak to who provided the wisdom of his own experience and hope throughout Ralph’s journey. The couple attended the Pancreatic Cancer Action Network’s Evening with the Stars event in 2005 and thus began their commitment to helping the Pancreatic Cancer Action Network in any way they could.
Ralph says, “I love my volunteer work. Taking calls from folks like myself who are filled with questions and who I can share my experience with has provided me a way to be useful. As Community Representatives, Mariann and I have participated in Advocacy Day in Washington as part of our continued commitment to help obtain the momentum needed for making pancreatic cancer research at the forefront of our leaders’ minds. Every day is a gift. Today, I’m an almost ten-year survivor, without evidence of pancreatic cancer. I am grateful, filled with hope and gratitude for the Pancreatic Cancer Action Network family and for the research commitment we must continue to be laser focused on.”
Mariann concurs, “Sharing our journey with patients and their families, listening to other’s concerns and walking the journey with people from all over the world has been a sometimes sad but ultimately joyful experience and we won’t stop our promise to get the funding we need until we reach our goal to double survival by 2020.”