On April 1, 2022 I was diagnosed with sacral chordoma at the age of 53. As a life-long athlete (soccer is my game!) with a healthy lifestyle, the news hit hard! While my beloved husband, Mike, took a deep dive into the medical facts, the surgeons, and the Chordoma Foundation, I started to train for surgery. Instinctively, my body knew that it was in for a hard physical journey. I also knew that if I went into surgery as strong, fit, and mentally optimistic as possible, the better the recovery and general outcome would be.
On June 29 and July 1, 2022 I underwent massive sacral resection, plus the removal of three nerves at UCSF, with the incredible chordoma specialist Dr. Christopher Ames "behind the knife." When I awoke in the ICU, my first conscious thought was, "I'm glad to be alive." I had to remain in the hospital for one month until my back healed and the intense nerve pain subsided enough for me to sit up — and then finally take my first steps.
Once home, the athlete mentality that is lodged deep in my DNA showed up. I thought: "I have an injury. Now it's time to rehab and then get back out there." I started with walking only, then added in my beloved bootcamp (we call it Camp Menopause) with modifications, then deep water aerobics twice a week — all the while being very mindful of not over-doing it and NOT breaking the metal hardware in my sacrum area (this was one of my surgeon's greatest fears). The following summer, my husband and I relocated for four months down to Loma Linda University Hospital for proton radiation treatment as a preventative measure to help keep the cancer from returning. The hospital graciously gave my husband and I a membership to their state of the art gym complex. Each day for eight weeks, after I completed my 7:00 am treatment, I went to the gym to walk five miles and lift weights.
Today, exactly three years post diagnosis, I continue to work out five days a week. I haven't been able to return to soccer, and I do experience chronic discomfort and pain, but thanks to my athlete mindset, and probably even more importantly, the support and love I have received from husband, two daughters, my mom and dad, my brothers, and my friends, I am alive and getting to do most everything I want to do. I am indeed very grateful, and it is in this place of gratitude that I hope to remain.
My conversations with Chordoma Foundation staff member and chordoma survivor Dani Pike have been game changing (pun intended). Dani went through a very similar chordoma experience as me. She is always SO incredibly positive, and she brings me the most excellent ideas about how to cope and connects me to the Foundation's resources for pain treatment, insurance, etc. She and I are meeting about every month or so now, and I really look forward to our conversations. She's also helping me get more involved in the larger chordoma community and helping me find ways to give back to this Foundation that has helped me and my family in myriad ways.
