Born and raised in the suburbs of Philadelphia, I was a kid that was involved in just about everything from playing basketball, softball and tennis to singing in every choir possible to founding the high school drama club. I attended Penn State University and soon made my way to San Francisco where I continued to perform, took classes at American Conservatory Theatre and had all kinds of interesting jobs like working on a global peace conference in Indonesia with a team that included Nobel Peace Prize Laureate Archbishop Desmond Tutu (life highlight!). When the time felt right, I decided to follow my heart to NYC so I could pursue singing and acting. Like most performers, I auditioned and performed but also kept a “survival job” as a personal assistant working for several clients involved in film, TV and Broadway. After two years of hustling, life changed in a way I never could have imagined.
I had a small bump appear on my gum and my dentist referred me to an oral surgeon. He removed it and on October 22nd, 2014, at the age of 37, I was diagnosed with Osteosarcoma of the Maxilla. It was bone cancer in my upper jaw. Surgery would involve a partial maxillectomy, in effect amputating part of my jaw and replacing it with a denture-like mouthpiece called an obturator. Anyone would be devastated and shocked by this news but as a performer and someone that finds more joy in singing than in anything else in the world, the idea of losing part of my mouth and not performing again was crushing. So I didn’t really let myself go there too often. I put all of those aspirations on the shelf for a while and did my best to stay in the moment and focus on gratitude for what I had (which was A LOT). The doctors felt that the tumor was still in it’s early stages and that I would likely not need to have chemo, so we were hopeful. I had my first surgery on November 25, 2014 at the Hospital of University of Pennsylvania and a week later was told that the pathology showed a larger tumor than anticipated so I would need chemo and another surgery after that.
I ended up having 4 months (6 cycles) of chemotherapy that literally flattened me and left me in the hospital for the first 4 days of every cycle. At the end of chemo I had a small break and then went in for the second surgery in May 2014, which went well. My surgeon felt good about the margins but said that the only way he would be completely comfortable was if the jaw was totally removed and replaced with my fibula. This would come as close as possible to preventing a recurrence but it would also leave me with a facial deformity. After much consideration, I decided against having another surgery given only a 10% chance of a recurrence. We all agreed that having a PET scan and MRI every 3 months to monitor the area closely would be enough and if there was another growth we would address it. I spent the next few months recovering and getting my energy back. I took part in a program with the YMCA and Livestrong Foundation specifically for cancer patients and it helped me immensely (both physically and emotionally) and I was ready to head back to NYC after living with my family in Philly for 9 months. I moved back and started to re-acclimate to life in New York, slowly but surely.
Things were going well and I had a clean round of scans. We were all looking forward to the holidays and I went home to Philly for Thanksgiving. A year to the day of my surgery, I took out my mouth piece to brush my teeth and suddenly my heart sank. I felt another bump in my mouth and I knew in that moment that the cancer was back and I would need to have the surgery I was desperate to avoid. A week later I had a biopsy that confirmed the recurrence and two weeks after that I had a ten hour surgery to have my entire jaw removed and replaced with the fibula bone. I was in the hospital for 10 days and was indeed left with a facial deformity that has led to confusion and heartache and a lot of physical and emotional healing. But I’m still singing. Those vocal chords have managed to stay in strong through a total of 7 surgeries and I pray that it continues through my upcoming facial reconstruction.
This journey has been excruciatingly painful and also one of the greatest blessings of my life. It has changed me in ways I have yet to discover but I feel like a different person in so many ways already. Cancer has led me to a life with more purpose and intention and a deep sense of gratitude for every single moment – even the painful ones. Things are beginning to come full circle as I sing at concerts and benefits and to speak about healthcare and the heavy financial and emotional burdens from cancer that no one really talks about. I am quite literally putting a face to head and neck cancers and hopefully, after hearing my story, people will not limit themselves or others. I feel like I survived this ordeal to teach people that we are so much more than how we look and we are capable of much more than we realize. My friend’s three year old said “Kaytie looks different but she gives the same hugs” and I think that’s such a lesson for all of us. We may look different but we all love the same way and we need to remember that now more than ever. And I hope that by standing up in front of thousands of people with a face that’s “different” and singing my heart out people will feel encouraged to follow the dream that they put away on a shelf when they didn’t think they could do it.