Five years ago, I locked myself in the bathroom in my bedroom and quietly sobbed to myself, not wanting my husband or daughters to hear me cry. I was looking for stories of hope following my pancreatic cancer diagnosis but I was not finding anything optimistic. Every blog I found had a very limited number of entries because the authors, once full of life and hope, had all passed away in a matter or weeks or months.
It was surreal. I was so young, healthy and athletic. How could this be my diagnosis? I did not think it was possible for any illness to have such an abysmally low survival rate.
My last FB post before my surgery for pancreatic cancer in 2013.
Where are the Survivors?
I searched the internet far and wide for information about young, healthy, fit, strong people who beat the odds and survived long-term after a pancreatic cancer diagnosis. I found people like me, who were young, athletic and optimistic about their survival. They all started writing following their diagnoses intending on sharing a story of hope and survival.
Not one of them was still alive at the time I found their blogs.
The one that finally broke me, sending me to find a space where I could cry alone and away from my family, belonged to a young man who was a cyclist. I looked at the sidebar of his blog and saw entries that continued for about three years. I was immediately ecstatic, thinking I had found ‘the one’, the long-term survivor who was able to carry on with his life after pancreatic cancer.
After reading all of the way through every entry, however, I realized that he, too, did not survive. His wife wrote the more recent entries after his passing, keeping his memory alive as she advocated for more pancreatic cancer awareness.
My heart broke for this young couple I did not personally know. I cried for them and I cried for myself and for my family. I was afraid and felt completely isolated and alone. Did anyone actually survive pancreatic cancer? If so, I wondered, where are the survivors and how are they doing?
In that moment, I decided I did not want other people to feel as scared and lonely as I did. I made a promise to myself that I would write about my experience so that somewhere down the line, someone facing pancreatic cancer might find me and see that I AM STILL HERE. I survived.
On November 18th, I officially hit the five-year cancer-free mark. I have had scares but no recurrences. My oncologist released me from his care on November 19th, 2018.
I am one of the lucky long-term survivors. I have no idea why I was fortunate enough to survive, but I did. As I have always said, I am not special; I am just lucky.
I wrote the blog for pancreatic cancer charity Project Purple for several years. Through that work, I had the honor of listening to so many people’s pancreatic cancer stories. Family members have entrusted me with their excruciatingly painful tales of loss and grief. Patients have spoken with me about their health, their fears, their financial woes and many other topics. I hold all of these stories sacred in my heart. Every person, every story matters. You matter.
Through other avenues, I have been fortunate enough to become friends with other pancreatic cancer patients. I now know there are other survivors. Our community is small, but it exists.
Still, I have mourned the loss of way too many whose lives have been cut tragically short. Every single death is personal, leaving me feeling gutted, even after all of this time.
I think about the gravity of this illness and the pain and suffering it brings to so many every single day.
Hope for the Future
Still, there is hope for the future of pancreatic cancer. When I was first diagnosed, the five-year survival rate was 5%. Now, five years later, it has inched its way up to 9%. This is still unacceptably low, but there are reasons to be optimistic. Pancreatic cancer is getting a lot more attention than it was even five years ago, and there is promising research for new treatments and early detection. There is a very long way to go, but the medical and scientific community is working incredibly hard to help patients now and in the future.
My Promise Kept
There are times I wished I had not put my story out so publicly. Cancer and the aftermath is fraught with many physical and emotional challenges. But I have never forgotten that day five years ago when I felt so alone and frightened.
While sharing my own experience, it was extremely important to me that I show the full range of emotions and feelings of my cancer story. While I believe a positive approach to life is helpful, I have always felt that it is unhealthy to deny the full range of human emotion.
One thing I have clearly seen over the past five years is how much difficulty our society has with emotions of fear, anger, and sadness. No one wants to live in a place of anger or fear for an extended period of time, but those feelings are real for everyone and it is important not to deny their existence. It is appropriate and important to allow yourself to experience feelings and thoughts that are not always positive. If someone comes to you and says, “I am struggling”, please acknowledge and validate the reality of those feelings. It is incredibly isolating to express a moment of vulnerability and have people respond with, “Just think positive!” This applies to many situations in life, not just a cancer battle.
Dogs provide some of the best comfort.
In any event, I have shared the good moments and some of the not-so-good moments over the last five years. I have done my best to honestly portray many of the important moments in my pancreatic cancer story. Cancer does not just come into your life and leave you an unchanged person. You will never fully be the person you were before cancer. That is the reality but it is not necessarily a negative. I have made some positive changes in my life as a result of having had cancer. I believe my relationship with my husband and my children is deeper and richer than it was before I was sick. I believe I live a more authentic life than I did when I was younger. But still, I mourn the toll this has taken on my body.
My goal with this blog originally was to help a future version of my newly diagnosed self find a long-term survivor. A survivor who has continued to live, laugh, cry and most importantly, love. A survivor who gives the next newly-diagnosed patient the permission to be afraid and to ask for comfort and compassion. A survivor who has dared to attempt some cool stuff post-cancer, but who doesn’t gloss over the difficulties of a very rapidly changed body.
Hopefully someone, somewhere has searched pancreatic cancer stories and found some comfort in my writing.
I am still here. I am alive. These last five years are part of my story, but they are not the end of my story and they are not my only story.
And with that, stay tuned because I still have lots of crazy shit left to do.
Finally, today is the last day of November, which is pancreatic cancer awareness month. I I recently recorded this podcast with Dino Verrelli of Project Purple. I talk about my cancer experience as well as running and the lessons I learned during my treatment. Click below to listen to the episode.