I was given the incredible honor to stand up in front of hundreds of inspiring swimmers, volunteers, and supporters of my favorite charity, Swim Across America-Atlanta and tell my story about my personal experience with cancer. Most people who know me know that I am not shy about sharing my story. It has nothing to do with me though. I want nothing more than to give a voice to the millions of people out there who are fighting this terrible disease, to prevent a person or parent from hearing "You/your child has cancer", and to raise awareness to the desperate need for funding and research to help us do those things.
My cancer, an inflammatory myofibroblastic tumor of the right lung, is an extremely rare cancer (only 100 diagnosed in the USA per year). It's so rare that there is barely any research on it. However, one very small research trial in the early 2000's showed promising results of a new genetically targeted chemotherapy, Xalkori, to fight this rare disease. Without the funding for the clinical trials of this research, I likely would have not been standing on that stage or sitting here to write this blog post on the website of the company that I founded just 4 months after my diagnosis. Rare cancers, particularly sarcomas and pediatric cancers, only receive 2-4% of research funding from the federal government. "There just aren't enough people affected to justify funding." But the problem is, and this is not to downplay other cancers (because they ALL deserve funding), sarcomas and pediatric cancers are some of the most DEVASTATING cancers that exist. Without research, we cannot find a cure.
So being given a literal platform to advocate, to give a voice to the millions who suffer--it was a joy, an honor, and a moment I will not forget.
Above you will see the video of my speech, filmed by my husband. It's not fancy, it's not flashy, and that's just how I like it. I gave this speech 5 minutes before jumping in a lake to complete a 1 mile swim, something I completed just 5 weeks after undergoing my 2nd surgery to defeat cancer. My doctors rolled their eyes at me and thought I was crazy, but I was going to let nothing stand in my way.
And--I did it!!! I was unsure if I would be able to complete it given the physical trauma I'd been through, but I powered through and it felt great!
Read more below about why I swim, and why I will continue to be #makingwavestofightcancer. I will swim as long as there are still people being told "You/your child has cancer."
This photo was taken by my husband, capturing my pure joy when crossing the finish line. My heart continues to burst with how amazing of an experience this was.
---Speech from Swim Across America-Atlanta, 2016---
As you have just heard, I have quite a story of my own to share with you. But you may be surprised to find out that my story is not why I am here. I swim for those swimmers who are no longer with us to keep racing against cancer.
I swim for Marin Morrison, who was a local swimmer here in Georgia. I never met her, but I can proudly say that Marin swam in one of the most courageous and inspirational races against cancer that I have ever seen. She meant something to me because she came behind me in local summer league swimming and broke all my records. At first I was annoyed that she had erased my name from the record boards. Then I realized that that her name coming into my life was not EVER about me or about records.
Marin was diagnosed with a brain tumor in 2005 as a freshman at Collins Hill High School. Despite being paralyzed on half of her body and nearly losing all of her ability to speak, she continued to swim. She never EVER gave up. Her doctors told her she would not compete again. But Marin had a different plan. As a former star studded age grouper in USA Swimming, she quickly moved up the ranks in the US Paralympic Organization and qualified for the 2008 Beijing Paralympic Games in 3 events. A few months before the games, she suffered a near fatal stroke. To anyone else, this would have resulted in a quick decline and an honorable swan song from their journey on earth. Not for Marin. She worked hard in rehab and in the pool and made it to Beijing. She had to be carried into and out of the water, but she heroically completed her 3 events. The entire “Water Cube” was on their feet cheering and clapping as Marin finished her swims at a brave but deliberate pace. She was left alone stroking gently in the pool minutes behind the nearest finishers. Most of you probably remember the major story of the Beijing games being when Michael Phelps really first officially etched his name into the gold medal record books. But with all due respect to Michael, I think there was a better storyline in that pool. Marin was the champion of the Beijing Games.
Marin passed away a just few months after the 2008 Paralympics. She literally lived so that she could swim in those games. I think of her every single day and she pushes me to swim, even when I think I can’t. Marin is why I swim, because if she could do it, then I can too. And I will, because she now can’t. I pledge to let her story live on through me.
I also swim for Lauren Beam. Lauren Beam was an accomplished NCAA swimmer and track and field distance runner for New York University who later served as head coach to her beloved Violets. Lauren fought a courageous 2.5 year battle with stage 4 colon cancer. Like Marin, Lauren never EVER gave up. Lauren exercised every day, even on the hardest chemotherapy days. She passed away on September 10, 2011. Her family started the Lauren Beam Foundation in her memory, which has provided numerous generous grants to young, active adults undergoing cancer treatment. I was fortunate to benefit from this foundation this summer to offset the expenses of my own treatment. I swim for Lauren, because she never gave up and because I pledge to let her story live on through me.
And then there’s me. I grew up here in Atlanta swimming at Dynamo and Duluth High School. I swam at Duke University, but suffered a devastating blow when I underwent career ending shoulder surgery before my junior year. I struggled to get back in the pool for nearly 10 years due to other injuries, but my love for swimming lived on and I eventually was back in the pool last summer, giving myself over a year to train for this very event today. And then came another blow. I was diagnosed with a rare sarcoma in my right lung on August 13, 2015 after being sick for several months.
With the help of a brilliant and vibrant sarcoma specialist, Dr. Gina D’Amato, we had a plan. After 8 months of genetically-targeted chemotherapy, my tumor—originally 11 cm in diameter—shrank nearly 80 percent. I felt as good as new. But, I still had a long road ahead. I learned that I would be having very aggressive surgery to remove the remaining tumor. My professional training told me that the extent of surgery might compromise my ability to swim for good. But in the spirit of Marin and Lauren and perhaps Dory the fish, I knew that I would find a way to just keep swimming. Plus, I had gotten sucked into volunteering on the planning committee for this event, so at a very minimum I was obligated to be here today. I figured I may as well be in the water.
I underwent surgery on May 19 of this year, which was a grueling 10 hour grueling procedure performed by Drs. John Moore and Greg Mackay. They removed the remaining tumor along with 3 of my ribs, part of my sternum, part of my collarbone, the right upper lobe of my lung, and the nerve that innervates my right diaphragm—or breathing muscle, rearranged a few muscles in my chest to cover the huge hole they left, and implanted 2 titanium prosthetic ribs. My surgeons told me that due to the extent of my surgery that it would be a long time-maybe a year or so of recovery-before I was back in the water.
But in the spirit of Marin, I had another plan. I made unthinkably fast progress. With my surgeons’ blessing, I was back in the water kicking with fins in 32 days. I sank at first, but quickly it felt normal and easy. My medical team was shocked, so they allowed me to swim “for real.” With practice (and some inspiration by watching Team USA preparing for Rio here in Atlanta!) it quickly felt normal and easy. I was thrilled! I was actually going to do it!
And then another blow hit me. I underwent another surgery on August 11 to remove the titanium ribs because I did the impossible—I managed to break one of them. People have called me Wonder Woman since before I was diagnosed and was undergoing a million tests, but now I really had to prove it and break titanium rods. Despite the heroic effort of doing that, it was truly heartbreaking. I was finally back on my swimming game and then WHAM—the rug had been pulled out from under me. I recovered for 2 weeks while watching Team USA totally dominate in Rio. After my scars had healed, I was in the water within 2 weeks. I have been in the water nearly every day since. It is exhausting, to say the least. My surgeons think I’m crazy to swim in this event just 5 weeks after my 2nd major chest surgery in 4 months. Maybe I’m crazy, but I’m on a mission, and I am determined to not let anything else stand in my way. Like Marin and Lauren, I will never EVER give up. After I do a few weeks of radiation here in the next month or so, I have a blessing to likely be cancer-free.
Thank you to my family, my husband, my incredible medical and physical therapy team, the Swim Across America family, every swim coach I’ve ever had along the way who taught me how to keep pushing even when I want to quit (Particularly Bob Thompson, my Duke coach who also lost a brave fight with colon cancer) and all of the volunteers, sponsors and supporters of this amazing organization and event.
Now let’s go Make Waves to Fight Cancer!