I went into the 2019 ZERO Summit with few expectations, little did I know just how much those three days would impact my life. I agreed to attend the summit with an interest in educating myself on the latest prostate cancer treatment options and research projects. I also hoped to be part of change in Washington D.C. that could provide additional funding for families like mine battling prostate cancer. ZERO certainly delivered by organizing a crash course on the latest prostate cancer treatments and by organizing meetings with House and Senate leaders who were willing to listen to our stories and entertain our requests for support. However, what I did not expect was that I would make such close connections with my fellow prostate cancer survivors, supporters, and caregivers.
How It All Began
When I was first diagnosed at the age of 43, I had a difficult time seeing myself in any of the men that I read about as I prepared for my surgery. The information that I found seemed to be more relevant for someone my father’s age. How would I ever connect with other prostate cancer survivors? This led to a feeling of isolation and confusion. I consulted with my medical team and searched the internet with no success. If there were other men with prostate cancer my age, they certainly were not talking about it. I made the decision that I would keep moving forward and maybe I didn’t need the support of other survivors. I had a strong support system at home and figured that together we could tackle the fight ahead on our own.
In the months following my recovery, I attended a few events specifically targeting men with prostate cancer. One of these events was the ZERO Prostate Cancer 5K. I showed up on the day of the event and walked with my family, engaged with a few of the medical sponsors, and left without speaking to a single survivor. As I looked around the event, the only people who I felt “looked’ like me were the family members of the survivors. Once again, I felt myself retreating unable to find that connection to any of the other survivors that I saw walk to the stage to be recognized.
In recent months, my focus has been on my own recovery as I tackled radiation and hormone therapy. I continued to discuss my experience through a video blog, which has resulted in a few connections with other survivors asking questions or writing words of encouragement. However, these interactions were at a safe distance from the realities of cancer. I was able to navigate these interactions because they were between myself and a faceless person behind a keyboard. I realize now that I was simply going through the motions. I had made the unconscious decision that I would not accept these men with prostate cancer as my peers. After all, by focusing on how we were different I did not accept how much we actually had in common.
My First ZERO Summit – And My Breakthrough
As I entered the Bold for Blue awards on Sunday night, I was greeted with a smile by one of the ZERO staff members. She could not have been more welcoming, and I secretly wished that she would never leave because I did not want to be forced into small talk with this room full of strangers. I quickly grabbed a drink to calm my nerves and found a space in the back of the room. As I waited for the event to begin, I sent a quick text home informing my husband that I had arrived, the event would be starting soon, and that as expected I was in a room full of men older than me and I wasn’t sure how the next two days would go. By the end of the night, I was inspired by the stories shared at the awards party. It was clear that the people supporting ZERO were dedicated, passionate, and loving. I just was not sure if I could connect with them on a personal level, just yet.
On day two, we were fortunate enough to have world class leaders in prostate cancer treatment, government policy, and cutting-edge research presentations. I was so grateful to have access to these resources and then was struck by how meaningful it would be to give newly diagnosed men a fraction of the information shared at this event. Next, I started to really take in small bits of information about different attendees that shared their stories during the various Q&A sessions. By the end of the day there was a shift in my perception. I had been so focused on the superficial differences between me and the average prostate cancer survivor, our ages, that I was missing what connected us. I had a bit of a breakthrough in the last few hours of day one. I realized that I was the source of my isolation and that I had the power to change it.
That night I went down to the lobby after we concluded, hoping to find someone to go to dinner with, so I could put in a real effort to connect with another survivor. I wanted more than to share our PSA levels, Gleason score, treatment plan, and list of current medications. I wasn’t sure what I was seeking, but I knew that I needed something more. Fortunately, the first person I ran into was another ZERO staff member that invited me to dinner and I happily accepted. On the way to dinner, I was reminding myself that if I wanted to make the most of this opportunity that I would need to put in the work.
Maybe it was the great food or the glass of wine, but I felt another shift in how I perceived myself as a prostate cancer survivor. I was no longer focused on the things that made me different from others battling this disease but started listening to the stories shared at that dinner. A couple that had battled this disease together, hand in hand. Their love and devotion not unlike what I feel with my husband. I recognized the look in their eyes. Her strength and eagerness to support him no matter what prostate cancer threw at them. I had seen that same look in my husband’s eyes.
About halfway through dinner, there was a bit of a seat shuffle and the man taking the seat next to me introduced himself and we naturally started talking about our diagnoses. He was around my age when diagnosed and had been battling prostate cancer for several years. As he told his story there was also a difference in how he talked about his experience. He went beyond the diagnosis and treatment and shared how the disease impacted him emotionally. I can’t express how much of an impact this was having on me even if I did not know this was what I was missing and needed.
Vulnerable. Honest. Humble.
I woke up on day three excited to storm Capitol Hill, but also hopeful that I could have more experiences like the one from the previous night’s dinner. As the day progressed I tried to engage as many people as I could, but I tried a different approach. I went into every interaction willing to be truly vulnerable. I wanted to be honest with myself about how prostate cancer has affected me, how I was dealing with the emotional aspects of recovery, and what fears I had as I look towards the future. What I found was a community of survivors, caregivers, and supporters who were not at all unlike me. These people were compassionate, strong, and resilient. I was humbled to be in their company and grateful to ZERO for creating an environment that we could make these lasting connections.
I leave the 2019 ZERO Prostate Cancer Summit changed forever. Not because of the knowledge gained or the excitement of lobbying Capitol Hill, it is because of the people that I met, and relationships forged. I am embarrassed now that I was unable to see just how much in common we all have and how I was focused on something so silly as our age gap. The ZERO Summit has ignited a passion to make real change in the advancement of prostate cancer care. It has also connected me to friends that I hope to carry with me for years to come. We are one family connected by a single purpose and together we will make a difference!