I was only seventeen when I found out I had tumors invading my bone tissue in May of 2004. A junior in high school, I was excited for the final summer vacation before adulthood kicked in. I had so many plans for my future. An artist, an athlete, an honor student, possibilities seemed to stretch in any cardinal direction I chose to tread. I had barely started to understand who I was before I began to wonder if I would live another year. When I should have been studying for SAT’s, I was researching everything I could on my condition and all that I found sunk me deeper and deeper into despair. I started to pretend that it wasn’t happening to me.
There were a lot of signs and symptoms early on. At the age of 12, I was very involved in sports. I was plagued by shin splints and soreness. My mother was concerned and took me to the doctor for these bruises numerous times. On each occasion the doctor said “she’s a young woman who likes sports, of course she’s going to have bruises and shin splints. Totally normal.” He never sent me for an x-ray. I continued to seasonally run track and play tennis, basketball, and volleyball throughout middle and high school, dealing with the aches believing them to be merely growing pains.
A junior in high school, I started my first job and six months into working at the mall, I bumped my shin very hard while putting away merchandise. Having such a high pain tolerance and being a very stubborn young woman, I told my manager that it wasn’t necessary to leave. I didn’t even mention the accident to my grandmother when she picked me up. Two weeks later the bruise was still multicolored and it kept spreading. Final exams were about to begin, stress was mounting and I couldn’t focus away from the pain. After working hard one day and the spasms came back, I finally asked my grandmother to go to the hospital. She was reluctant to take me after work the night before a final, but it saved my life. Not only was there a hairline fracture, there were almost two dozen tumors from knee to ankle.
After months of testing, a surgical biopsy revealed that the tumor sampled was benign osteofibrous dysplasia – a type of non-cancerous tumor that in some cases develops into the aggressive cancer, adamantinoma, which invades the bone and muscle tissues of long limbs and if untreated it would lead to lung tumors. Fatality for adamantinoma once it reaches the lungs is about 80%. In 2004, the results were both good and bad – I was cancer free, but I would have to stop playing contact sports and other risky things I did like skateboarding and surfing. If the bone was to break – there was a high probability it couldn’t be put back together because of the internal damage from so many tumors. I would also need x-rays and CT scans every year for the rest of my life to check for adamantinoma in my legs and lungs. Relief doesn’t even begin to describe the gratitude I felt.
Seven long beautiful years go by. Studying biology in college occupied most of my time. I substituted new hobbies for old ones – snorkeling and kayaking instead of surfing, bicycling instead of skating, and I played sports on the weekends with friends only. I started creating more artwork. Volunteering for environmental groups became a big part of my life then. I didn’t even bother to get a driver’s license until I had my first son at 24 years of age. My feet took me everywhere and I’m grateful for every mile they treated me to.
Two weeks into grieving the loss of my firstborn in 2011, my tests results came back for my annual check-up. On the x-ray, one of the tumors had started migrating into the surrounding muscle tissue. A deep depression became bottomless, I was spiraling out of control. I almost didn’t go to my appointments the week my firstborn died, I didn’t care about anything except sleeping and avoiding every person who tried to comfort me. During my follow-up visit for a CT scan and an MRI, I was given a pregnancy test.
To complicate the story even further, it was positive. I did not get my scans done that day. My doctor asked me what I was going to do – if I carried the baby, I may risk my life and the life of my unborn. If I chose to terminate the pregnancy, I could start treatment right away that may or may not include chemo, which could make conceiving and having a healthy baby complicated, if not impossible, but my survival odds would be much better.
When you lose a child, such a huge part of your heart dies and the rest of it wants to follow. Then, you find out you may be dying and a part of you is grateful that you may finally be reunited with the only true love you’ve ever known. When all hope is lost and you’re content with letting the demon take you, a little miracle happens, someone still needs you here that outshines every other person in your life… and you’ve never even met them yet.
I took my chances and we both won. Nine months later, Max was born and I was in Miami for testing the following week. There were no tumors in my lungs, therefore chemo and radiation were not to be part of my treatment plan which meant more than likely I wasn’t going to die any time soon but the biopsy was positive for adamantinoma. Within 5 weeks of my son’s birth, a donor was found and I was in surgery. My entire shin bone from knee to ankle with the exclusion of the joints was removed and replaced with a cadaver bone, secured with several screws and a titanium rod. I thought I had known pain before, but that moment I woke up in recovery, I was taught what true pain really is.
At first I looked at my scar from knee to ankle as very disfiguring, I wouldn’t show my lower limbs at all. Having been humbled and realizing how powerful I was, I now wear my scar like armor. It reminds me every day how lucky I am to be alive, and my healthy boy was the icing on the cake. Nothing else mattered, petty everyday things melted away and I finally found gratitude in simplicity. The doctors may have saved my life, but my son saved my soul.
Almost 4 years post-op and cancer-free, I am about to apply for medical school because I can think of no better way make a difference like the doctors at University of Miami who saved my life and limb. To this day, I have not let my “disability” stop me from living out my dreams. I spent a year on crutches learning how to walk again and I’ll probably never reach 100% functionality, but that doesn’t mean I will ever slow down. Not until I find ways to help modern science figure out how to prevent this from happening to others.
If you or a loved one has been impacted by sarcoma cancer, we encourage you to share your story. Sharing your story can be such an inspiration to others who are dealing with sarcoma in their own life and remind us all of the urgency to find better treatments in order to make an impact on the devastation that sarcoma cancer brings. Let your experiences help others become involved with raising awareness!