My husband Charley is a 13-year prostate cancer survivor. As his partner and his advocate, I am a 13-year survivor, too. Our journey with this disease was especially terrifying during the first few months after hearing the words, “Mr. Sweeney, you have cancer.” From that moment, waking up every day meant we would be dealing with challenges we’d never expected to have to face. Challenges for which we truly weren’t well prepared.
And this became even more difficult because our families who should have been there to support us, were not. We quickly had to accept that people have various methods to handle bad news and sometimes it might be to go into denial or simply to walk away. But we were fortunate to have excellent doctors and nurses, and through it all, we always had each other.
Things changed for the better in 2015. While enrolling in a clinical trial at Johns Hopkins, we found the ZERO Family. This organization has been our lifeline in so many ways. They’ve offered not only financial, informational, and educational support, but on another level, the people who administer the organization and the people who are the survivors and advocates have been a blessing to us with their sharing and their constant supply of caring.
This year I was asked if I would help with the 2020 summit as an ambassador. I wasn’t sure what this would entail, but I would do anything for this group, so I agreed. It all began with a phone conference – a “Shawn Supers Rally” with lots of different people chiming in from different places around the country.
“Hello! This is Cheryl, Chas, Vivian, David, Venetia, Mark, Suzanne …” Some of the voices I recognized. Voices full of willingness to do whatever they could for their ZERO Family. Our leader, Shawn, gave us an overview of tasks she’d like us to accomplish. We were assigned people to email, call, and welcome. For some on our lists, this would be their first ZERO Summit and it was important to ensure they would have someone to reach out to if they were feeling anxious about this new venture. Many of the people I spoke with were grateful to be able to personally connect with someone and we had long chats and I was able to answer their questions. If I didn’t know the answer, I transferred their emails to someone who could help.
Our group of ambassadors held regular phone conferences with Shawn to make sure we were all on the same page and to plan for what we would be doing once we arrived in Washington. Emails passed back and forth with further information and the color of the ambassador sashes was confirmed so some of us could coordinate our outfits and add bling. I have difficulties just keeping track of the clothes on my back, so the loose sash was a challenge for me and I kept losing it throughout the three days. (But I didn’t let that hinder me from doing my ambassador assignments.)
On Sunday afternoon, Charley and I walked into the Gaylord Hotel. Standing in front of us were three lovely women wearing their baby-blue sashes and lighting up the lobby with their smiles and bling – ZERO Summit Ambassadors welcoming people and letting them know we were there for them. More ambassadors were upstairs in the corridors and at the registration table. I retrieved my sash and began to help out while Charley signed us in.
Our second official task was to decorate the Cherry Blossom Room in preparation for the party to honor ZERO’s Heroes. Centerpieces, cowbells, favors, and pompoms in shades of blue were placed on the tables. Easels and posters and awards were set out and then we hurried back to our rooms to get ready for the festivities.
We mingled and met the people with whom we’d spoken and emailed. Faces put to the voices. Strangers became friends as we all cheered on the people who are the backbone of this awesome group. The tireless ones among us who continue fundraising and fighting for themselves and their loved ones to help find a cure so that others would not have to ever have to deal with prostate cancer again. It was a joyous occasion and the perfect start to the work ahead.
Throughout the next two days, we carried out our assignments, jumping in to do whatever was needed to help make things run smoothly. Greeting and helping at the registration table; helping with the microphones; helping to moderate breakout sessions; timing the speakers. I was a really good timer, but I have to admit, I was no help at our ZERO Olympics. We had planned some informational games as a respite from workshops. Unfortunately, I am not good with games or rules mainly because I lack the discipline it would have taken to not jump in and scream out answers. (When I taught, I never required my students to raise their hands. My classroom was never a quiet one.) I’d like to say I’m working on my self-control issues, but at age 70, it’s a lost cause. Charley will vouch for that. In our follow-up ambassador phone conference last week, it was decided that we wouldn’t be doing ZERO Olympics next year. It’s probably for the best.
As I look back on being a 2020 Ambassador, I realize what a valuable gift I was given – the opportunity to be the person who could listen or help, even in a small way. I was able to communicate with people going through the different stages Charley and I had experienced during our last 13 years. It brought back old feelings of what it was like to travel the waters of this sometimes perilous journey often without a compass, a lifeline, or even a light to guide us.
ZERO has become our lighthouse and we have discovered that it is filled with lighthouse keepers who will be there for us if and when we need help navigating through our storms and into calmer waters. And in a sense, we are all Ambassadors for our common cause – making sure a cure is found for Prostate Cancer and while that is happening, making sure we are there for our fellow travelers.
Until next year, I wish you peace and smooth sailing.