This Is My Story
Today, we had 300 more people join us for specific "advocacy" training. Our numbers on the Hill tomorrow will reach close to 500. That's 500 dedicated volunteers bringing a purple bag and a message of hope. Among us are 41 brave survivors of this most lethal cancer. Tammy, my sister, is one of them. This has been an emotional journey for many at this event, but emotional for my sister and me in a different way.
My sister was diagnosed with a very rare form of pancreatic cancer called a neuroendocrine islet cell tumor. One of the things that has been repeatedly disappointing is people's reaction to my sister's type of cancer. She and I both have been told on numerous occasions we are lucky she has the "good" type of cancer, implying there is such a thing as a good type of cancer! "Oh you didn't have the ‘bad cancer,'" they say to her, as if she hasn't suffered. As if her type of pancreatic cancer doesn't matter as much because it isn't the cancer most people get. Who are these people?
One of the things she and I have both learned through this medical journey is that many people don't think before they speak. If they did, they would recognize she has suffered, and the phrase "you have cancer" carries with it a very heavy burden. From the 30 pounds she lost while immobile in the hospital, the inability to sit up on her own after major abdominal surgery (whipple) or eat anything for weeks, to the astonishment in the anesthesiologist's eyes when pain relief was finally realized for her when they dosed her for a person 3 times her size, I can assure all this was suffering. One of the most difficult things was the scared look in her children's eyes, then 4, 6 and 8 years old, and her brave and steady reassurance to them she was going to be alright ... she and they would get through this.
Lucky, yes we are lucky. Lucky that by pure chance her tumor was found after an abdominal CT designed to diagnosis something else. There are no early detection or screening tests for pancreatic cancer. Lucky that she is a strong woman with a good support network. Lucky that she and I both have the ability to leave our jobs, and our families for 5 days to come to Washington, DC, and advocate on behalf of ALL pancreatic cancers. We have been happy to put our precious time into this effort to help create hope for the future for all those affected, regardless of the type of pancreatic cancer.
As nurses, I believe we are more sensitive to the language we use with patients than the average population. Language is a powerful tool used to provide empathy and support or to dismiss or diminish someone's experience, especially within the context of a person's health. We spent all day learning how to advocate on the Hill, the importance of message becomes critical when you're only given 10-20 minutes of a congressman's time. In the end, the final message was "tell your story."
So that is what I am doing here with you. My name is Julie Simani and I am here in Washington, DC, because 3 years ago, with three small children at home, my sister was diagnosed with pancreatic cancer. Pancreatic cancer research is today where breast cancer research was in the 1930s. This is unacceptable and I want to change that. To start changing the grim statistics I want my members of Congress to co-sponsor the Pancreatic Cancer Research & Education Act, which lays out a strategic plan to streamline progress for pancreatic cancer research within the NIH and the National Cancer Institute (NCI), and I want them to commit to doubling the budget for the NCI over the next 5 years by increasing NCI funding to $6 billion in FY2010, an increase of 20 percent over FY2009.
This is not the end of my advocacy, but only the beginning; please join me.
Julie Olson Simani, MS, RN, CBE, CQIA