I’ve written about Sanctuaries in past blog posts. It’s a favorite theme of mine – those places where we can speak freely, laugh loudly, cry quietly, seek peace, find companionship. In our minds, “Sanctuary” can conjure up a myriad of images – places where we feel safe. But safe places are not solely dependent upon the security of walls. Sanctuaries also can be found right out in the open, the best of them nesting quietly within a gathering of people working toward a shared goal.
Recently, Charley and I attended the Zero – The End of Prostate Cancer Annual Summit in Washington, D.C. (This is the group that has helped us with the incurred cost of drugs needed in the five-year clinical study that Charley, along with 1,499 other men are part of.)
For this Summit, they’d asked Charley to be on a panel and talk about the “Financial Toxicity” cancer patients and their families face. In addition to workshops and sessions during the three days of the conference, we’d also attend scheduled meetings with the Senators, Congressmen and Congressional Staff from Rhode Island in regard to pending bills and funding. Prior to our trip, we’d studied the reading materials and took part in their Webinar. But the two of us were still unsure of what the actual experience of our first Summit would be like.
The first night of the conference, we listened as a survivor told of his experiences from his diagnosis to the present day. From the soft chuckles following some of his stories , he’d obviously been through many of the same experiences as other men in the room. He spoke about first being told by a doctor that his PSA was rising. “And what do you think was the next thing that came out of my mouth?” he asked our group. Resoundingly there came a unified response, “What’s a PSA?” (Prostate Specific Antigen is a protein produced by cells of the prostate gland. Levels in a man’s blood test are used to determine if cancer cells may be present.)
Zero Prostate uses much of its money to get the word out about the importance of check-ups and PSA tests for men. That’s just one part of the quest for a cure. But many doctors still need to be schooled in understanding what tests and treatments should be done. They need a better understanding of the “whys” and the “whens”. Charley’s doctor never told him his PSA was rising. It wasn’t until he transferred his records to my doctor for a routine check-up that he was informed his PSA was doubling (at which point he, too, asked, “What’s a PSA?”). He’d had no symptoms but he was sent for a biopsy which showed the need for further treatment. When the urologist came into the room to give us the results we were met with, “Good morning Mr. and Mrs. Sweeney. The results show you have cancer.” As simple as that. “You have cancer.”
And all of the men and women in that room could fully understand the impact of those three words. They, too, had lived through this. The energy and the laughter and the enthusiasm to the speaker in that room and through the events of the next few days was palpable. These were people on a mission to make sure other men did not have to face this without the resources to help them and their families navigate through this potentially debilitating experience.
During the workshops the next day it became apparent that these advocates had been at this for a while and they already knew what had to be done. Charley and I were the new kids on the block and the only ones there from Rhode Island. We had a lot to learn and we paid close attention during all of the sessions.
And the overall feeling throughout was that hope was everywhere. It permeated the rooms, the corridors, the elevators.
Now, feelings are something you learn to cope with when cancer suddenly enters your life and the windows are flung open to let emotions rush in. I remember it all. I watched as Charley dealt with all of the unchartered territory that was part of the “Program.” I held his hand; had conversations about things I’d never imagined we’d have to face; researched the internet; asked questions of his doctors; ran interference with people who, for whatever reason, seemed intent on causing him unneeded stress. In short, like every woman in that room, I became his advocate. I went through all the stages; all the emotions those other wives, mothers, sisters, daughters and friends had experienced.
Disbelief as the person you love is told he has cancer; Helplessness as he’s wheeled into an operating room; Uncertainty as you wait hours for the surgeon to come out and give his report; Determination that you’re going to beat this together; Disappointment in people who are not there for you when you most need them; Gratefulness for the people who are there for you; Thankfulness on waking every morning and realizing how precious each day has suddenly become; Anger; Fear. And always, underneath it all, the sadness.
Everyone at that summit could identify. But it was the feeling of hope that they’d brought with them to this conference. I’ve never been in a place filled with so much hope and energy. It was a sanctuary. This was a place where no one was a stranger in a strange land. We were all members of the same tribe, having gone through the same rights of passage and we had earned a place there because of our shared experiences.
The Summit was a safe harbor where resources were made available. And it was a place where men could discuss, with seriousness, what they had been through and then laugh out loud together at some of the more “indelicate” moments of their journeys.
What this Summit gave to us was invaluable. We, who, at times, had been dependent on doctors, nurses, medicines, treatments and everything else a critical illness brings with it, were being empowered. We were being trained to be the new advocates who would return to their home towns ready to spread the word and help others with our knowledge and energy.
One of the most empowering experiences was spending Wednesday on the Hill, meeting with our Representatives in Congress and educating them to the importance of funding for cancer research. And the men, the survivors, would be telling their own stories which in the end, would make the difference.
When we met with Senator Whitehouse, Charley told his story. He was supposed to die years ago, but we did not accept the prognosis. We insisted he be placed into studies at Johns Hopkins and now, ten years from his diagnosis, he’s involved in a study which has placed his aggressive cancer into remission. But the funds that had been provided by Zero for one of the study’s drugs had dried up last summer, with three more years of research still needed to be completed. A top study in the nation had been compromised because the funds were not there for some of the men to continue. All of our Reps understood that Charley wouldn’t be standing with them, if not for this research which could eventually lead to a cure.
At the end of the story, Senator Whitehouse turned to me and said, “I imagine you’ve become quite a good advocate, by now?” I explained that Charley was a very capable man who could advocate with the best of them. But sometimes, when needed, I jumped in because we were a team. I further explained that over the years we’d carefully trained people to understand, “They could either deal with St. Charles or (pardon my English) they could deal with Bitch Woman!” (The smarter ones always chose the Saint.) The Senator laughed and grabbed my hand to shake it. “My wife would love you!” he roared. “That’s because she’s from Rhode Island!” I roared back, pumping his hand even harder. (Rhode Islanders are a breed unto themselves. It goes back to Roger Williams.)
At Senator Reed’s office we schmoozed for a while about our up-coming high school reunions. I informed his staffers that “Jack was the most popular boy in my all-girl’s school because he was always available to escort anyone who needed a date. He was a kind boy who’d grown into a kind man in my estimation. He listened intently, as Charley explained what we were asking for and then told his story.
At Representative Langevin’s office we had our picture taken and he confided in us that his father had died of prostate cancer and his brother was a survivor. He understood the importance of funding research for the cure we all feel will be inevitable.
As we headed for the airport on Thursday, I checked Zero’s Face Book Page and there was the news that the final version of the fiscal year 2017 Defense Appropriations Bill which includes $90 Million for the Prostate Cancer Research Program finally had been voted out of committee. The following week, it was approved by the House.
We began to realize that within 24 hours, all of our personal messages to our Reps had made a difference. It was not only affirming but incredibly empowering for everyone. And empowering is what Zero does best.
If you know of anyone, any family or friend, dealing with prostate cancer, please give them Zero – The End of Cancer website. () You could save his life.