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Susan Rafte: Pays it Forward

A “miracle” survivor of metastatic breast cancer, Susan is the Survivor Founder of Houston’s Pink Ribbons Project. Every day she works to answer the question, “Why am I here?”

HFM:You were diagnosed with breast cancer in 1994. What was your life like prior to that diagnosis?

SR: I was learning how to be a mom. My daughter was born on December 31, 1993. She was 8 ½ months old when I was diagnosed. Before that I was a legal assistant in the corporate world, which is how I met my husband, Allan. I don’t know that I was “living the dream,” but I was I was happy.

HFM: How did your diagnosis impact you emotionally and physically?

SR: I had presented with a lump right as I was pregnant. I felt it during a shower, doing a quick check. It was ignored by my ob-gyn, who then confirmed I was pregnant. We ignored the lump completely during my pregnancy. As far as I knew, I was healthy. I thought, “So I have a lump.” My sister had lumpy breasts. When I had my baby and started nursing, I could feel the lump. I kept presenting it to my ob-gyn, who would pinch and say it was nothing. In the back of my mind, I knew something was not right.

When that day came when I got the call, it was devastating. It completely turns your world upside down. But at the same time, it was confirming my intuition that something wasn’t right. I left all my physicians behind. My brother was a pediatric surgeon and got me a name at M.D. Anderson.

I was at stage 3. The cancer had been progressing for last 18 months. When I first felt the lump, it was pea sized, and by time it was diagnosed it was bigger than a walnut. The size wasn’t so much the issue, but it had gone into my lymph nodes, and they knew this was an aggressive cancer. I progressed to stage 4. I did therapy and then surgery in October of 1994, standard chemo for breast cancer and a bilateral mastectomy. Then I had to do more chemo and radiation. I finished everything in June of 1995.

In the fall of ‘95, I was in New York for the first Pink Ribbons event, and I felt twinges in my back. It was confirmed that the cancer had metastasized into my spine and hip.

HFM: That event played out well for you, though, right?

SR: Yes, the event, which my sister put together, raised money to send women to Washington to testify about chemo therapies and treatments that were being used successfully in Europe but hadn’t yet been approved in the U.S. As a result of these testimonies, the drug Taxotere was approved. I was fast tracked through and was one of the first patients to use it. The drug put me in remission so I could go forward with a very aggressive stem cell transplant.

HFM: Where are you now with the cancer?

SR: I am stage 4. I live with breast cancer. No one’s ever used the word “cure.” But here I am, 20 years later. I am definitely only an outlier–an extraordinary responder. I have far outlived what I was supposed to and beyond. People say I’m a miracle. I say, “No, I just have a stage 4 disease.” I know people look at extraordinary responders and ask, “What is the link? What’s the difference in her biology?” Being an outlier was unsettling for me when talking to other stage 4 patients because I couldn’t tell them, “Just take this pill and you’ll be fine.” This is one consequence of being a stage 4 cancer survivor. I ask, “Wow, why am I here?” But I can look back and see all the things that came out of everything I went through.

HFM: One of those things was the Pink Ribbons Project, an organization that provides for Houston’s breast health needs.

SR: Yes, the Pink Ribbons Project is huge and has been a big part of my life since diagnosis. I was executive director when my sister, Jane [Weiner] stepped away.

HFM: Pink Ribbons’ mission statement describes using “free spirit and creative vision to abide in motion.” Can you explain this mission?

SR: The genius was my sister, Jane. When I was first diagnosed, she was a very active dancer with a modern dance company in New York. It came from her heart and from her incredible artistic flare. That artistry has evolved, and I think everything we do has an artistic touch to it. When you’re told you have breast cancer, it’s not a death sentence, but something dies inside of you. A dream. Of having more kids. Of what your identity is going to feel like, what is it going to be. That’s why soul has such an important meaning to our organization.

HFM: What’s been your greatest challenge?

SR: My daughter was 8 1/2 months old when my life changed. I went through some aggressive treatment. When I was diagnosed with the metastatic cancer she was 2. I had to cancel her birthday party. Here she was turning into this little person, and I felt like I was missing it. I knew I had a pretty tough road ahead, and putting her to sleep in bed I wondered if I would get to see this kid grow up, and it was heart wrenching. That was probably the worst aspect of this whole thing. I mean, the treatments were difficult. I got pretty sick. I almost didn’t make it. That was the medical side. But it was the sadness that I wouldn’t be there to see her grown up and to be a part of her life. I remember doing silly things, and picking out who her mom should be.

HFM: That must have been tremendously difficult.

SR: It was. But she was my reason to wake up every morning. I feel bad for the patients I talk to who don’t have a reason to get up every day–a dog or a cat, even. You have to make sure you’re accountable for somebody else.

HFM: What wisdom can you impart on people struggling to survive–whether it be cancer or some other challenge?

SR: Open yourself up to letting your community help you. We don’t live on an island. We actually live in one of the most generous cities on the planet. Know your neighbors and let them know when you’re struggling. You can reach out to them, and some day you can return the favor. Some people want to be stoic, saying, “I can do this”or “I don’t want to give up my position as mom.” Moms can be possessive over their responsibilities. In my case, I had to give them up so I could get my health back, so I could step back into the mom role.

HFM: How have your experiences impacted you as a parent?

SR: I am pleased to say my daughter is very strong. She is a strategic communications double major with a focus on public health. You try not to shove it down their throats, but it’s important as parents to remember that kids do learn by example. My father was a pediatrician in a small town in Western Pennsylvania. The coal miners would go on strike, and he’d give free services to help families when times were tough. My mom was a bookkeeper but always volunteered to do things in community. All three of us kids have generated some positive philanthropic energy. We were raised that way, and we act that way as adults. It’s nice to see it coming through to the next generation.

HFM: What’s your greatest accomplishment?

SR: Having an incredible daughter. The most inner self you can go is to create another human being. Not just to parent somebody to adulthood, although that has not been without its challenges, but now that I see her at 22, finding herself, turning into a beautiful young woman who is already accomplished and with a lot to carry forward to her life, seeing that through is probably is the most rewarding part of being a parent. If you ask her, she’ll say, “no,” but we are best friends.

Being threatened with metastatic breast cancer and seeing it through is another blessing.

And I think it’s really cool now to be there for the two people that raised us, who are now 84 and 87. My dad had a stroke and has dementia, but I am here and am able to help him and my mom in their final years. Through the cancer, all of it, they were such an awesome support to me. It’s nice I can return the favor. I don’t know if you have can ever pay your parents back, but having your own kids, that’s the nice thing, you kind of pay it forward.

Pink Ribbons also has grown up, and now I can be on the sidelines and do other things, like research, and I don’t have to be there every day. We have an incredible staff. The mission continues.

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january, 2021

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