Beth Barr and I spoke on the phone today; perhaps the first time ever. We tried to trace back how we first met because it feels as if I have known Beth forever, like a distant cousin or relative that has always been in the back of my mind. We did not attend school together but grew up in the same Florida Panhandle city of Pensacola. We cross referenced all our connections and agreed that it must have been in our mutual friend Tia's backyard pool around third grade. There was a reconnection years ago through the miracle of Facebook with Beth liking pictures of my dog and me sending comments of her on the beach like "Hot Mama". I knew things about her such as her success at the 1988 Olympics, her beautiful children, the occasional garage sale or puppy fostering but that was it. Recently, I learned more about Beth Barr, she was diagnosed with two forms of breast cancer and seeking treatment. Her candor through social media motivated me to ask more about what was going on and what she had to say...
EP - First, let's fill in the gaps of where you have been and what you have done since around the age of 12?
BB - Hmmmm... how to best explain my 9 lives... At 12 my international level swimming career was just getting started. I was very young on the scene and retired from swimming at the age of 25. During that time I experienced a lot of success and an equal amount of failure. Of course, the '88 team where I won a silver medal. It was a bittersweet experience in that we had to swim against the East Germans and, just like the many women before us, we were robbed of what we had worked so hard for. I thought I'd have a chance to redeem myself, but it never happened -- a horseback accident in 1989 that shattered my arm did a lot of short and long-term damage to my body. But it was a miracle that I survived and that I'm not paraplegic. It's my silver lining to that event...I think it's where I learned to always look for the silver in the darkness... and it has served me well.
In 1992, I had wanted to try for the team again, but my body was suffering due to overtraining a body that had not ever fully recovered from the accident. I opted to have bi-lateral rib resection (taking my top two ribs out) because the inflammation caused from swimming was forcing my top two ribs out and then over my collar bone. A lung was punctured during the surgery and my hopes for 1992 were over.
In 1996, I was swimming faster than ever and was in a great position to make the team. Food poisoning two weeks before Trials and then the resulting bacterial pneumonia ended my swimming career. It was devastating. Then a couple of months later my little sister Becky was killed in a car accident. Talk about putting things in perspective... it really did. There are important things in life and there are some very fun, challenging, glory-promising things in life that, in the big picture, are extremely frivolous. Life was put in perspective and while I'm grateful for the lesson... I wish I still had my sister.
I soon after moved to D.C. and worked on the Hill and then with a small business lobby. Got married, moved to Phoenix, had a baby, got divorced... isn't that the way it goes these days? It was time to find the silver in the darkness again, which I did and now I have two beautiful children. Starting over in a relatively small town that doesn't have a lot of public affairs and public relations job, it has been a struggle. But all in all, I live near the beach and that always makes life better.
The last five years have been hard and 2014 was by far the most difficult. Allowing the wrong people, the wrong employers, accepting just the most downright wrong circumstances into my life and not listening to my instincts finally took its toll. I made a decision last December to start drawing boundaries and trusting myself over others. It's made all the difference....despite the cancer, 2015 has been a good year... a great year... so far. I will not let cancer take that away from me and those I love.
EP - You seem to have been quite a leader and an open book. What drives you to be this person?
BB - I don't know that I'd say I'm a leader. I'm very independent which can make me kind of stubborn sometimes and if I know I'm on the right path, anyone else is welcome to follow... or not... I'll go my own way anyway. Regarding cancer I've been an open book for a couple of reasons. Firstly, this is not a big town and Pensacola is notoriously gossipy. If I go to the grocery store and have no hair, it will get out that I have a fatal liver disease or I went Britney Spears, people always preferring the most dramatic story to the simple truth. I would prefer to take charge of my story, myself. I'm also not ashamed of having breast cancer. It's nothing I did wrong... why should I hide or be ashamed? I also hope I can help someone, somewhere. You hear people say that all the time when they are going through something traumatic. I think it's because we want to make sense of the senseless and if there is a benefit or reason, then it would be would make the struggle more bearable. Always... always... looking for the silver in the darkness.
EP - Ok, now the hard questions... when did you find out about breast cancer, what is your prognosis and what is the treatment?
BB - I found a lump in February. I had always read that cancer wasn't painful. Because the lump hurt I wasn't worried... I thought they were cysts. So I waited 3 months before I went to the doctor. That was precious time lost to ignorance. Breast cancer lumps can be as painful. Please, if you are reading this and you have a painful lump, get it checked out.
When I finally got to the radiologist, she brought me into a dark room where she had my mammogram images up. She started asking questions about how many children I had...if I had any support in Pensacola... could someone come up to the doctors office now to sit with me? Then she handed me a box of tissues and said "You are not like what I'm going to say but I am trying to save your life." I was numb for weeks. They discovered through biopsy I have two different types of breast cancer, lobular and ductal. They believed it was stage 3 but were hoping for stage 2. After a couple of weeks of tears and frustration (the waiting is the worst) the MRI and PETscan showed it had not moved into the lymph node and was therefore at stage 2. I was going to live. It was a huge relief. The prognosis for stage 2 breast cancer is very good.
Once i realized it wasn't stage 3 or 4 and I was t going to die from this, I started noticing all the people around me whose situations are dire, permanent or fatal. I stopped feeling sorry for myself and realized how blessed I am. I'm sure the families in Charleston would do anything for their loved ones to have stage 2 breast cancer. I'm sure pediatric cancer patients parents would love to be in my position. This is temporary, I'm very blessed, and I'm clinging to that.
The treatment will be 8 weeks of chemo -- 4 total treatments every 2 weeks for 8 weeks. The chemo treatment is called Adriamyin and Cytoxan. It's a doozy...it's nickname is "The Red Devil" but it's going to save my life so I'm grateful for it and every side effect it brings. After that I'll have 12 weeks of Taxol which is a drug I haven't learned about a lot yet...I take everything one day at a time. We aren't sure yet if I'll have to have radiation therapy. Then 4-6 weeks after the treatment ends, I'll have surgery. It could be anything from a double mastectomy to a lumpectomy depending upon how favorably my cancer reacts to the treatments.
EP - What was your initial reaction?
BB - Complete shock. Cancer never dawned on me. It was something someone else went through. You prayed for them. You prayed for their family. You supported them in any way possible. You brought them casseroles. You definitely didn't get it if you had very little family history. I was wrong.
EP - How has this affected your daily life?
BB - Everything is day by day. Sunday was good. Monday was hard because of the fatigue. Tuesday was horrible, but Wednesday was awesome! It's Thursday and I'm back to nausea and being tired. I'm ready for another awesome day.
EP-You have obviously tapped into a power reserve such as cold fusion because you are managing multiple responsibilities: mother, employee, friend, and overall human being. What are the obstacles and how are you coping?
BB - You are sweet. The last five years have ingrained survival in me. As a single mom, you do what has to be done no matter how you feel. You don't have the luxury of choice. Everyone has been having to remind me to slow down when the chemo doesn't force it. I'm getting better at letting things go... like dirty dishes in the sink or not returning every phone call. I'm learning to cut myself some slack which I couldn't do if I didn't have the encouraging, supportive network around me.
EP - I was struck by a text message reply where I asked you when we could speak and you replied "I'll be at work until about 4:30 and then I'll have 3 swim lessons starting at 5:30. So from 5:30-7:00 I'll be busy but other than that it's cool :)" How much sleep or rest are you getting and what is your support network?
BB - That day was a very good day. I felt really good. I paid for it the next day so I'm learning what my limitations are and will eventually figure out how to stay within those boundaries so there is less up and down.
My parents and brother have been great and my boyfriend is a rock. Those four work together to plan the day when I'm not able to get everything done. My best friends have been wonderful, taking me to chemo, American Cancer Society and such and just making sure I'm staying positive. A lot of friends have really rallied around me. I have a gofundme account that a friend set up and it has been very humbling that people care that much and is helping me stress less about money and focus more on healing. I think when you go through hard times over an extended period of time and your priority is survival, you can lose sight of the goodness of people. I'm not good at asking for help. For me, cancer, as much as it sucks, has brought with it a lot of blessings. In order to beat it and get through this process, I have to focus on those blessings and not be afraid to ask for help.
EP - I chose the title for this chat from the outside observation of Olympian=Strength, Mother=Responsibility, and Breast Cancer Patient=Vulnerability; do you agree with that or what would you change?
BB - I think a lot of people think Olympians are always strong. We're not. We're human just like everyone else. I don't have a constant stream of strength that I have magical access to. I do think elite performance training does prepare you to go the distance with a goal in mind. It's motivating. The difference between athletics and real life is that in real life there isn't always a black and white determination at the finish line...and there's no finish line! The most heroic "strength" stories I've ever known have been people facing incredible odds with little support. They don't have anyone cheering them on or a sponsor paying their way. The real strength is in getting up everyday and doing what you need to do to support and encourage the people you love. Those are the real heroes.
EP - We spoke about you losing your hair and I tried to make light of the situation by sending you a picture of a high fashion model with no eyebrows but as an athlete, I know you are very much in tune with your body. On a serious note, how are you planning to deal with these physical changes and what are you doing to mentally prepare?
BB - I'm trying to prepare myself but truthfully, I can't wrap my mind around it. I think, just like everything else, I'm going to have to take it day by day. My boyfriend has told me countless times he doesn't love me for my looks...he loves me for me. I have to rest in that and know that this is all temporary.
EP - I know you have a natural tendency to put yourself out there but are there moments where you want to crawl into a shell and hide? What is your purpose for sharing this life changing moment?
BB - Oh, I've hid from a lot. Just like everyone else I've made bad decisions in my life that generated a certain amount of cocooning. And even with this there is a bit of protectionism in my sharing...it will get out. It's me taking control of my own story.
EP - Your bravery and strength has been enlightening for me; what else would you like to share about this experience?
BB - I really want people to know that breast cancer lumps can be painful. Even if you frequently get cysts, please take each one seriously and get checked out. Every lump is a threat.