This blog post is the first in a series of entries geared towards those who are fighting and living with Pancreatic Cancer. Pancreatic Cancer has a very high mortality rate, with only six percent of patients surviving for five years after receiving their diagnosis. Furthermore, the treatments that are currently available for Pancreatic Cancer are often exceptionally difficult on the body. Every year there are over 46,000 new cases of pancreatic cancer diagnosed in the United States. Despite facing daunting odds, there are people who are battling, fighting and surviving pancreatic cancer. The “survivor series” will address the needs and concerns of those who are currently living with Pancreatic Cancer. The survivor series blog posts are also for anyone who is interested in learning more about what people with Pancreatic Cancer face every day in their lives.
For the first in the “survivor series”, I asked several pancreatic cancer survivors how they felt upon first receiving their diagnosis. As anyone who has been affected by this disease knows, once you hear the words, “You have Pancreatic Cancer”, your life is forever changed. I still remember the doctor saying the words “Pancreatic Adenocarcinoma” to me. I sat in stunned silence, just nodding at him. One minute we were laughing about something inconsequential, and the next minute I felt like the entire earth had shifted underneath me. I was rendered speechless. I knew little about the illness except that it was not a diagnosis anyone wanted to have. I remember looking up the survival statistics for the first time. When I saw the abysmal survival rates, I was shocked. I wondered if there had been a mistake. I was the healthiest person I knew. I took good care of myself. I wondered if I had passed on a cancer gene to my children. I wondered if I would be around to see them grow up.
Question: How did you feel when you first received your diagnosis?
I was in the hospital and I made them discharge me. My first thought was, “I am going to die.”
Mine was not diagnosed until ten days post-op. The doctors thought it was just a huge cyst and had told me they did not think it was cancerous. My doctor came in and sat down. He looked defeated, because of what he had to tell us. I knew the stats were not good, but I would not allow myself to look them up until near the time of my oncology appointment because I was so ill from post-op complications. When I finally looked them up, I panicked.
I could not believe my ears. The gastroenterologist’s exact words were, “Sorry, you are stage IV. There is no chance for surgery.” I wanted to scream, but felt nothing coming out of me. I felt the ground give in and knew I was going to die. I just did not know how long I had. I then went to the oncologist office. I started crying when I saw him. He had been my mom’s oncologist and was so good to her. I just felt comfort when I saw him. I asked him how long I had and he told me no one could tell me that, only our God above knows.
When I was told I had cancer, I immediately told the doctor, “Take it out”. He said, “You need to consider this….you could die.” My reply was, “I could…now take it out!”
I was diagnosed after a stent was placed in my bile duct to open a blockage. I was told there was a 95% chance that it was cancer. I had already guessed that it was cancer, but it was still a shock. I felt tears running down my face. I had to wait a month for the jaundice to go before I could have surgery. In that time, I researched the disease and surgery. I decided this is not going to get the better of me. Still, I struggle with survivor’s guilt and depression.
I was sent to the ER for a scan. The doctor on duty told me, “There’s a mass on the head of your pancreas.” I knew two people who had passed away from Pancreatic Cancer, so I knew it was not good. I remember being thrilled when I was told that my tumor was “borderline operable” because any remotely positive news was good news. I seemed numb to what was happening, but I remember fear of the surgery as much as fear of the cancer.
At 1 pm on a Saturday, my primary care doctor called and said to drop everything, pack a bag and get to the hospital immediately. When I arrived, he said, “We are pretty sure you have cancer of the pancreas. If you are lucky, and we caught it early enough, you have under a 10% chance of surviving. If not, we will send you home to get your ducks in order, because you will only have 3-6 months to live. I will give you ten minutes to digest this.” I took that time to cry, pray and beg God for a miracle.
I received a phone call from my doctor. He said, “I am sorry, but you have a rare type of pancreatic cancer.” We spoke for 15 minutes, but I was so numb, I do not remember any other details.
I had to go for testing to determine if I had cancer. I thought, “I don’t have cancer!” After testing, an intern broke the news to me that I had cancer. I cried for about two minutes and then composed myself. The surgeon told me to get my affairs in order. I thought he meant to get my bags packed. I asked if I could go on vacation before having my Whipple, but he told me that if I did, he did not think I would make it back to the hospital alive. I had been sick for so long, I just wanted the cancer gone so I could feel better.
I always thought, “If I ever get cancer, just do not let it be pancreatic. I had a dear friend who died 9 months after being diagnosed with pancreatic cancer. I had also read about Patrick Swayze. It is so ironic that I ended up getting diagnosed with Pancreatic Cancer.”
I never expected it. I was going to nursing school and thought I was having gallbladder problems. I went in for testing and at the follow-up appointment, the doctor said, “What do you want to hear first, the good news or the bad news?” I said I wanted the bad news first. The doctor said, “You have Pancreatic Cancer.” I don’t think I heard too much more of the conversation except that I was going to have some type of big operation. I went home in shock. All I kept thinking about was my youngest, who was in kindergarten at the time. I knew my chances were small, and I kept asking God who would take care of my son and raise him with the motherly love I had planned. I felt so alone. I never thought about the future. I just prayed that I would have a future and took it one day at a time.
I found out over the phone six days after I had the Whipple. I was alone. I remember it was October 19th, and it was pouring rain outside. I planned for my funeral over the holidays. That was three years ago.
I went to the ER after having seen 7 specialists in the six months prior. When I first found out about my tumor, I thought, “I am dead”, because I knew Pancreatic Cancer had really lousy survival statistics. I am a really logical person, too. I can remember thinking there was a 10% five-year survival, but when I went home and googled it, I read that it was only 6%.
I had no fear. I told the surgeon, “It does not belong in me. Get it out!” That was 9 years, 8 months ago. Be positive. Stay strong. Believe!
In a nutshell, the doctor’s words seemed to come out like hot lava. The slow flow of words seemed to hit a transparent wall distorting them and making them ripple to me, like looking across hot pavement. Everything in the distance was wavy and unsteady. I immediately turned to my husband and said I was sorry. All I could think of was him raising our boys alone. Then I moved on to asking the doctor what could be done and how much time I had. He warned there may only be weeks. The doctor handed me a box of Kleenex and I laughed telling him, “I’m not crying. I don’t need a tissue. I need a Xanax because my heart may have just had a seizure” So, I went home with my husband in the most beautiful quiet pink snowfall I’ve ever seen. It was quiet. Peaceful. I for the first time in my life could stop and take in every beauty around me. I learned a powerful and valuable lesson that night. You have the power to stop and take in life whenever you want but you can’t stop time from moving forward. It’s not a race to the end because you never know how far away the end may be. If you run a marathon you can’t sprint the first half because you’ll never finish. This has been a marathon lasting me three years so far. I’d rather keep my pace and endure the hills enjoy the valleys. Sure beats going full out for a 100 yard dash.
Every survivor has a different story. Each survivor responds to the news that they have pancreatic cancer in his or her own way. Some experience shock and disbelief. Many people experience fear over both the diagnosis and the treatment. Every response is unique and deeply personal. What is clear is that when confronted by the survival statistics, each survivor knows that better and more effective treatments are desperately needed. Right now only six out of every 100 people who are diagnosed with pancreatic cancer will survive for five years. With better funding for research, hopefully soon the survival rates for Pancreatic Cancer will improve. Project Purple is committed to funding research that will help produce better therapies for Pancreatic Cancer in the short-term and a cure over the long-term.
Read the full Pancreatic Cancer Survivor Series
Project Purple is an impact-driven organization with a vision of a world without pancreatic cancer. Our mission is to find a cure for pancreatic cancer and improve the lives of patients through support, hope, and compassion.