#24FacesCancer – Team Cootie Jones
At the age of 26, on the brink of starting a new job after a summer of travel, there could be no bigger surprise than hearing the words, “malignant tumor,” and being handed a pamphlet titled “What is Cancer?”. I had been having pain and slight swelling in the cartilage of my left ear for close to a year, to the point of little sleep and several rounds of needless antibiotics, but a cancer diagnosis was still the furthest thing from my mind when I went to hear results from the biopsy I had done a week prior. My surgeon advised me that they had found Rhabdomyosarcoma, a soft tissue tumor more commonly found in pediatrics, and referred me over to Levine Cancer Institute to go over treatment options. Despite the best efforts and world class care of my team at Levine, I am still in treatment a year and a half later, now with countless rounds of chemotherapy, radiation, and surgeries under my belt, but remain ever hopeful that the latest plan will be the one that brings me to remission. Regardless of this being the hardest time in my life, by far, I have plenty to be positive about, much of which comes from the impact of 24 Foundation.
Having been forced to turn down my job offer and submit to a rigid schedule of infusions and check-ins, it wasn’t long before I started looking for a beneficial way to spend my spare time. While most of my days were spent with family and nights with my boyfriend and friends, I needed something to occupy myself with, a way to be productive and feel that I could still have a normal life. My dad has always been a cyclist, and through his connections he had been involved with the then named 24 Hours of Booty as a volunteer in years past, but had never participated. When he brought up the idea of us creating a team for the 2016 event, I was eager to have something to focus my thoughts and efforts on, both for myself and for my always supportive friends and family. Once we got the ball rolling, we were hooked on making sure our team was as successful as possible. First, there was coming up with a team name and logo, as we knew we would want to get custom Giordana jerseys. My older brother is seven years older than me, and when I was born he famously said that my parents should have named me “Cutie.” Through the Whittaker way of coming up with silly names and phrases, my nickname evolved into Cootie Jones, and as they say, the rest is history. My dog has a distinct look of having one ear that stands up and one that flops over, so I had the idea of using her as our mascot and logo. Since my boyfriend is a graphic designer, he put the logo together and got it ready to send over to Giordana. We can’t wait to get our new jerseys this year for our growing team.
It wasn’t until we got more involved with our fundraising efforts that I found out about just how many programs the event was responsible for, and how I had already benefitted from them. The first way I was helped by 24 Foundation was through the nurse navigator assigned to me at Levine. When I met my team of doctors, I was given an immense amount of information about the disease and treatments. Juggling all the information, the many appointments, and getting quick questions answered would have been impossible without the help of my navigator and her quick-reply emails. She was also an advocate for recommending me to have eggs frozen so as to preserve my future chances of fertility. Egg preservation is an expensive process, but my navigator was able to supply me with the necessary paperwork to make sure I was helped by LiveStrong, another beneficiary of 24 Hours of Booty, saving me thousands of dollars. I would soon come to find out that the 55 survivorship programs available to patients were also funded by 24 Hours of Booty, programs that help patients through their treatments both physically and mentally. These programs range from yoga and acupuncture, to music and art therapy, and all give a sense of community feeling to the more commonly sterile hospital environment.
The event day was so fun for us last year as a team of family and friends. We have friends who live on Queens Rd W and they graciously let us use their house as our base camp. They provided Midwood Smokehouse BB-Q, and we got another friend’s band, Knowne Ghost, to play on Friday night for the start of the ride. The survivors lap was an amazing and emotional way to start the ride, which I did on the back of a tandem bike with my dad as the driver. I was still in the midst of chemo during the event last summer, but the adrenaline of the event and having so many friends and family together gave me the strength to ride several more laps on my own; I couldn’t sit still and am equally excited for this year’s event. I am so thankful for everything I’ve received from 24 Foundation. I have first benefitted as a patient, then as a fundraiser, and now as an intern, and am so thankful for all the support I’ve received in each step of this journey.