The Voice

When One Door Closes, Another One Opens

Life is not the way it’s supposed to be.
It’s the way it is.
The way you deal with it is what makes the difference.
– Virginia Satir

Alexander Graham Bell said, “When one door closes, another one opens.” However, he added, “but we often look so long and so regretfully upon the closed door that we don’t see the one which has opened for us.” This concept perfectly reflects my experience after being diagnosed with lung cancer in 2007.

Of course, it is natural, after a loss or shocking news, especially a diagnosis of lung cancer, to focus on the proverbial door that’s closed. That was true for me. Did I have a future? It certainly seemed uncertain. I was diagnosed, by accident, at the earliest stage and only had surgery to remove the cancer from my lung. But I focused on my diagnosis, what had just happened to me out of nowhere. I remember wondering if I should buy any new clothes, because I didn’t know how long I would be around. Because of my accidental, early diagnosis, I had good reason for optimism. Still, it took time to feel less anxious about what had happened and what was ahead. I was left with the echoes of the door slamming.

women’s empowerment exchange
Photo of women’s empowerment exchange heads of cancer NGO’s In Brazil

Then, just as my diagnosis seemed to come out of the blue, in 2013 came an invitation for a fellowship in women’s health and leadership. This program involved an exchange program between women heads of NGOs in Brazil and their counterparts in Massachusetts. Our Brazilian participants would partner with counterparts in Massachusetts heading their own cancer organizations. What a wonderful opportunity! I knew almost nothing about Brazil, so the chance to work closely with, and get to know Brazilian women, seemed like a gift dropping down from the heavens. The Brazilians would come to the USA for two weeks and, in turn, we would go to Brazil for 2 weeks. I remember thinking at the time that horrible things happen and wonderful things happen. What a balance in the universe.

I was so fortunate to have two women to work with. Marcelle Madeiros, from Rio, started a cancer organization after her sister lost her life to breast cancer. Her organization focuses on educating women and helping them acquire wigs after losing their hair to chemo. My other partner, Joana Jeker Dos Anjos, was from the capital of Brazil, Brasilia. After this young woman lost her breast to cancer, she used her energy and power to change government health policies to guarantee breast reconstruction surgery. While Marcelle and Joana were in Boston, they worked energetically to help me spread the word about lung cancer, and they were “hands on” in helping with a concert Upstage Lung Cancer was planning that Spring. Working together created a deep, lasting friendship and mutual admiration.

Two weeks later, all of us, Brazilians and Americans, gathered in Sao Paolo, Brazil. Most memorable was what a warm, loving and kind people the Brazilians are. We were greeted with hugs and departed with sweet gifts of remembrance. Our first meeting, at the Governor’s palace, was led by the police commissioner for Sao Paulo who was also president of the State Council on Women. She not only discussed medical care for women, but also described creating the first police station in the world specializing in women. How astounding to have police stations, now many more, protecting the medical and physical health of women (including rape cases) as well as addressing discrimination in the workplace. The purpose was to influence public policy and practices. Wow. Respect and protection for women taken seriously. I felt inspired to be sure to keep this perspective and need in mind, and to address women’s issues in lung cancer whenever I could.

So, the door to Brazil opened to a new vista for me. After meeting a group of wonderful women, locally and in Brazil, I then had the opportunity to travel to Rio and to Brasilia. Both experiences had a huge impact on me.
In Rio, we went to a favella, an area of the urban poor on a hillside on the outskirts of Rio. These areas have been known to be dangerous and home to drug dealers. My friend Marcelle arranged for an afternoon meeting with local residents, where medical professionals came with information about breast cancer and welcomed questions from the audience. This created an opportunity to eliminate any misperceptions in the community about how women get breast cancer and what screening and treatment options offer. After the exchange, there was a van available outside for women to immediately get mammograms, right there in their neighborhood. I thought this concept would be very beneficial to set up in our own communities. I thought about replicating this idea to provide information about lung cancer, and to have screening immediately available in a nearby van. It seems to me the best way to eliminate fears and distorted information is to have knowledgeable people available for conversation and answers. I’m hoping we can be a part of this kind of innovation in the future.

When I joined Joana in Brasilia, I went to see public and private hospitals. In one of the public hospitals, I had the consent of a patient who had recently undergone reconstructive surgery to see her new breast. Her doctor was also present and he spoke of the meaningfulness of this work. Witnessing the gratitude on the woman’s face, and knowing the hard work Joana had done to facilitate the opportunity for this treatment for underserved, public communities, had me crying in the hallway after leaving the woman’s room.
It has been nine years since my trip to Brazil. I continue to have dear relationships with many of the women involved in this project, here and in Brazil. This fortuitous experience opened a door I never expected to have in my lifetime. I’ve seen what it means to give everything you have to make a difference, even when the odds are stacked against you.

Since my diagnosis of lung cancer, I’ve had the good fortune to have made many friends in the lung cancer community: patients, families, medical professionals, advocates and pharmaceutical representatives who also advocate for patients. Because of the many dedicated people I’ve met, I now know the meaning of what it means to be a hero. A hero is someone who faces terrifying odds and still manages to persevere, sometimes a day at a time. I’ve had the honor to have made a friend who lived for many years with advanced lung cancer and who chose to join in several different clinical trials, including Phase 1 trials. Of course, she hoped they would help improve her own situation, but also, she wanted to do it for others who might be able to benefit from her participation and new medication that could become available.

My friend, Betsy Neisner, who was one of the women who was part of our Massachusetts delegation, kept a brilliant account of our journey to Brazil. She shared with me some of the ideas she brought home with her. They included: celebrate the agency of the group and the connections we made; educate those with authority to influence them to create change while asserting our rights and demands for improvement; and find the common bond and weave together diverse strands to create a more powerful movement.

I remain empowered and energized to keep trying to invest in the most excellent early detection lung cancer research possible. Research matters. Also, I’ve opened new doors with our podcast series, blogs and our concerts, Upstage Lung Cancer will continue to get the word out about lung cancer. Lung cancer can happen to anyone with lungs, so be bold and join our effort to do what you can.