At the age of 38, I was single and living a kind of fast and loose restaurant industry life in Long Island, New York. I had just bought a house and moved in on a Friday. The following Monday, I was diagnosed with breast cancer. All I could think of was- how do I make a mortgage payment? How do I survive this? In 1998, people said “the c word”, they didn’t say cancer and they didn’t say breast cancer. It also meant that you were likely going to die. Being single, I also worried about how any man could love me if I didn’t have a breast. You know-the kind of idea you have when you’re in your 30’s. There was no place I could go to for support. I was trying to keep my diagnosis a secret from my family and my employer.
I Found My Cause
My doctor sent me to speak with a woman who was previously diagnosed with breast cancer. She said, “Oh you are here to talk about . . .” and she sort of brushed her chest, she couldn’t say the word. Right there, I thought, I’m in trouble! I was miserable, still working, but going through the motions. If anybody laughed, I was furious, and if anyone was nice to me, I thought they had an ulterior motive. When I lost my sense of humor was when I knew I was in real trouble.
One day I had my “aha moment” and said enough is enough. I was alive, and strong–fierce, but the cancer diagnosis was draining my spirit. It was then I decided to start a breast cancer coalition that offers support groups and other services. I began by going door to door in my neighborhood asking people if they would come to a meeting at my house. I was introduced to Linda Williams and, together with a local councilwoman, we formed a Board. Our first project was to find an oncological social worker. We found a brilliant woman who is still with us today and is loved by our clients.
For the first five years we were moving along comfortably, our group was making progress and doing great work helping newly diagnosed women and their families, when I was diagnosed with breast cancer again. It was during that time that I realized that there was so much more our clients needed because I needed so much more. At that point, our organization really took off. I truly believe that passion must be part of your life, and I had found my passion.
After my second cancer diagnosis, two significant things happened. We made the decision to close our original organization and moved to establish the Coalition for Women’s Cancers at Stonybrook Southampton Hospital. We set it up to provide services for clients diagnosed with breast or gynecological cancer. At the same time, I experienced the devastating loss of my mother. My mom was my best friend and biggest cheerleader and her death hit me hard. It was a difficult period of time for me but I kept going because there was so much to be done to help our clients and their families.
Assisting Women and Their Families
The coalition has grown to the point where we engage with 50-60 families a year and our services are extensive. While support groups are an integral part of what we provide, there are so many other services that are less intensive but go a long way to help ease the practical burdens. For example, we assist with transportation: there are parts of Long Island where the closest place for chemotherapy is 40-50 miles away.
Our transportation service offers car rides, cabs, gas cards. The “Lend a Helping Hand” program offers up to $750 to be used as is needed. When we first started this program, I envisioned the money could be used for whatever would bring joy to our client. I thought, “perhaps someone will go on a vacation, or go out to dinner!” The reality was that while our clients agreed that a dinner out would bring them joy, they really needed to pay the electric bill, pay the doctor, or buy food. Sometimes they do end up going out for a fabulous dinner or massage, and that’s fine too.
The peer-to-peer group is a group of women who have also had cancer surgeries and who are good listeners. We train them for over a year to be able to talk to other women about similar surgeries that they had. We provide many wellness programs that include massage, yoga, acupuncture circles, and retreats. Also we have fun– I’m a firm believer in laughter and we take good care of each other.
The “Newbies” is a group of 30-something year old women who have come together to help each other and the newly diagnosed. They’ve become close with each other and often get together socially. It was rewarding to watch this happen. One of my biggest fears has been- what will happen to the coalition once I retire or die? As I have watched this amazing group of ten young women I realized I have nothing to worry about. The Newbies are so vital to the continued success of the coalition.
When I look back I wonder how we pulled this off. I realize it was the women in my life who made the difference. From the beginning, my mom was my rock and strength and behind me one hundred percent. Linda Williams, whom I met through the President of the hospital at the time, was amazing. When we first met, she looked at me and said “I’m going to make you the face of breast cancer” . . . and she did. Linda pushed me, she inspired me, and convinced me I could do anything if I put my mind to it.
I’m also very fortunate to have a wonderful sister-in law, Theresa Roden. Theresa and my brother were living in a houseboat when she found out she was pregnant, and the morning sickness forced her to move to dry land so she moved in with me. This coincided with my second cancer diagnosis. We became very close during this time and though we were both going through periods where neither of us felt our best, we managed to have some laughs.
I believe my journey was meant to be and many little miracles happened that I didn’t recognize at the time. As I became more deeply involved, I found that I truly cared about and wanted to help people. I was very good at it and had never realized that was part of my personality. I learned that I’m a good listener, not sympathetic but empathetic. That led me to the next project.
Easing the Process of Death
My Mom had a stroke almost seven years ago. Since she had a private room with two beds, I was able to be there with her. I hung pictures in the room and played her favorite Frank Sinatra music. Even though it was the worst time of my life, it was beautiful. Her family spent time with her and she was surrounded by our love. I was there holding her hand when she passed away. A few months later, two women I was friendly with were dying of breast cancer. As I watched the husband of one woman sleeping in an uncomfortable chair, and the aunt of the other woman sitting on the laundry bag, I thought, this isn’t how anyone should die. I reflected on how my mom had died six months earlier, surrounded by love and peace and beauty. I knew I had to do something.
We created a room at the hospital in honor of Lucia, one of our friends who died. It’s a beautiful room and everything was donated. The room was designed to convey a feeling of peace. As odd as it sounds, it is a beautiful place to die. It includes space for loved ones to spend the night in comfort. Many people say they want to die at home, but when the time comes they really don’t want to, or their family doesn’t want them to. Creating Lucia’s Room was the first step we took to addressing the process of dying.
I’ve also become trained as an end of life Doula. A traditional Doula assists families through the birthing process. An end of life Doula assists families in the end of life transition. Since becoming a Doula, I’ve been with several women as they were dying, and it’s been a revelation. One woman, whose husband had pre-deceased her, wanted to let go but couldn’t. As we spoke, I told her to tell him to put his hand down and take his hand. She looked at me and said, “I’m going to be able to dance with him!” and then peacefully passed away. Another woman suddenly looked past me, almost above me,
and her whole face lit up and was animated, as if she saw someone or something. She looked 30 years younger in an instant. It’s so interesting what people must be seeing or feeling during their last moments. I heard a priest speak at a woman’s funeral and he captured death in a way that brought me comfort. He said she was on a sailboat, because she loved the water, and we were waving goodbye to her on one side, but on the other side there were people waving hello and welcome. You can see people smiling and glowing on the other side, waiting to get their arms around her! Isn’t that a beautiful analogy?
As we began to get more requests for our Doula service, our original group of four has expanded both in size and geography and we’re able to help so many others. When we announced a new training session, 13 people registered in less than two weeks! The Doula program is taking off. My wish is that everyone can die peacefully and have their family and loved ones with them.
When you Visit the Dark Side . . .
One of the most important things I’ve learned through my experiences, is that I am so much stronger than I ever gave myself credit for. My mom had this great saying, “God has the last word, and he is always right”. I often forget that, but when I remind myself, I can breathe and say it’s going to be okay. You know, shit happens. We just must keep moving forward. One of the best pieces of advice I ever got when I was first sick was, it’s okay to visit the dark side, just don’t be there too long.
When women come to the coalition and say it’s not a big deal, I tell them it IS a big deal. It’s okay to feel miserable and scared and sorry for yourself and say I’m not getting out of my pajamas or brushing my teeth. But then tomorrow you have to get moving. Let me be miserable, let me play the country music so I can REALLY have a broken heart. And then say okay, that’s it. Try not to stay on the dark side for too long, because the longer you stay in, the harder it is to get out.