After a routine colonoscopy in July 2014, I was diagnosed with stage IV pancreatic cancer on my birthday. I was told that the tumor was so large that it covered the entire pancreas and beyond, rendering my cancer inoperable, and that I would need to start chemotherapy immediately.
I could see in the doctor’s eyes that it was questionable as to whether I would make it to my next birthday.
But I knew I could not succumb to the fear associated with pancreatic cancer. I made a resolution that I would not allow myself to be afraid and that I would direct all of my energy into surviving. I believe our thoughts create our reality, so I intended to use my thoughts in only the most positive manner. I also decided that no matter what the doctor had said, that somehow my tumor would shrink enough to have it removed, allowing me to be cancer-free one day.
In order to stay positive, I never looked up statistics or read about what the disease had done to others. This was my journey and it was going to be unique to me. That’s all I needed to know.
The ONLY website I recommend to patients is www.pancan.org – the Pancreatic Cancer Action Network was a great source of information for me. My husband found their educational webinars informative, and the organization was very helpful on numerous occasions in searching for clinical trials for me to consider.
I also participated in the Pancreatic Cancer Action Network’s Know Your TumorSM personalized medicine service. The report provided treatment options that were selected based on the biology of my particular tumor. The report was reviewed by an expert panel and helped provide valuable insight to support the treatment decisions I was making with my healthcare team.
It helped immensely to know that I had options.
I am blessed with a loving family. They circled around me and took turns taking care of me. My husband stopped traveling for work and stayed home with me. They put 35 pounds on me by cooking for me all day long and forcing me to drink Ensure and Boost. Putting on weight is really important with pancreatic cancer. They had charts and posted everything all day long – giving me my medicine, taking my temperature, doing energy work and keeping me engaged with my life.
When I received chemotherapy, I said to myself every day how grateful I was that it was shrinking the tumor. I knew in my heart that it was doing its job. I allowed no doubts about its effectiveness into my mind. It was a tough six months with three days of chemo every two weeks, but I knew that it just needed time to shrink the tumor. And I was the perfect patient, doing everything exactly as directed by my doctors.
The chemo did shrink the tumor by an amazing 70 percent! The oncologist was astounded. But when I went back to the surgeon, he said that it was impossible to take out the tumor because it was wrapped around arteries that couldn’t be replaced and that I should just have radiation. But I refused because I wanted the surgery. Yes, I heard what the doctor said, but I simply did not believe it was impossible to remove the tumor.
Sometimes you have to be bold, be your own advocate and go outside the box to get things done.
My husband and I started looking around the country at other hospitals and had just gotten an appointment with a doctor at Johns Hopkins when we found out that a local hospital – Sylvester Comprehensive Cancer Center at the University of Miami Hospital – was getting a new pancreatic cancer surgeon – one of the best in the country. I got an appointment with Dr. Nipun Merchant, and after looking at my scans he said that he would try to remove the tumor.
After a nearly 10-hour surgery, Dr. Merchant let me know that he had indeed been able to remove the tumor and that all the nodes and margins were clean. That ranks up there with one of the best days of my life.
I now feel that I am back to my old self, playing pickleball, golfing, going to the gym, traveling and generally enjoying my life. I’m also a volunteer with the Pancreatic Cancer Action Network’s Survivor and Caregiver Network, in which I speak with patients and caregivers and am a shoulder to lean on after diagnosis. I’m happy to be able to do this for others.
It is the combination of good medicine, reliable information, a great medical team and a positive attitude that can bring you through the trials and tribulations that are at the heart of pancreatic cancer.
I have already enjoyed one birthday since the day of my diagnosis and will celebrate a second one this month!
Donna Robinson
Coral Springs, Fla.
Are you a pancreatic cancer patient, caregiver or family member? Wage Hope your way today by contacting PanCAN Patient Services for disease information, clinical trial options, information about Know Your Tumor and much more. Call toll-free at 877-272-6226 or complete our contact form.