TELL YOUR STORY
We invite you to tell us your
sarcoma story, as a patient,
survivor, or as someone who has lost
a loved one to sarcoma.
I remember the night I walked into my parents’ bedroom at 10 o’clock and announced with fear and force, “I have cancer.” They looked at me as any parent would with a 13-year-old daughter who was perfectly healthy and extremely active. But I had found a lump, and, for whatever reason, I knew what it was.
My late night announcement was followed by a visit to my doctor in an effort to appease me. Mission accomplished; I was diagnosed with a cyst. I remember expressing to my doctor, with a sigh, how relieved I was because I thought it was cancer. I was reassured that all the signs pointed to a cyst. The location, my age, the size, and no other symptoms. Several months later, when it hadn’t shrunk, I went in for surgery to remove the cyst. The following Monday my entire family was hit with the news that everybody (except me) had been wrong. It was cancer.
I was diagnosed with Rhabdomyosarcoma, which had grown quite large in the time that had lapsed due to the misdiagnosis. It was contained within my pelvic cavity, and at stage 3 it was large, but somehow, luckily, it hadn’t spread.
Thirteen is a tough age to have cancer. For one, there’s the social component. I tried going to school after my first round of chemotherapy, but two hours into my first day back I realized that it wasn’t going to work. I couldn’t have asked for anything more from my friends and family. My friends scheduled all birthday parties and weekend get-togethers around my “good week” – the one week out of every three (or four) when my immune system and energy level was high enough to socialize. My family was willing to drive my anywhere, anytime. This included several weekend trips home to Lincoln, Nebraska from my two-month stay in Rochester, Minnesota, in winter blizzards and fog so that I wouldn’t miss any critical, life-altering, earth-shattering eighth-grade social events.
In retrospect I sometimes wonder if these drives were a greater risk to my health than the cancer itself. But on a serious note, these efforts meant a lot to me. Spending time with my friends helped me remember that there was more to my life than nausea and mouth sores and low platelets. Life didn’t have to be put on pause. I could still laugh until I cried with my best friend, stress over what to wear, experience my first crush.
And then there’s the hair. I remember the morning I woke up in the hospital a few weeks after my first round of chemotherapy, and thinking nothing of it, ran my hands through my hair. When I pulled my hand away I saw that a large clump of hair had come with it. That was one of the first days I cried about any of this. I thought I wouldn’t care when my hair fell out, but seeing it there in my hand changed everything. I think that was when reality hit. This wasn’t a dream. This wasn’t a joke. This thing inside of me was going to change my life.
Thirteen is also a tough age because every child is at a different maturity level. I was definitely mature for my age. I completely understood what death was, that I had a legitimate chance of dying, and that critical decisions had to be made to provide the best possible chance to survive. I have amazing parents who fought tirelessly for me, always keeping me involved in the decision making process. The doctors, however, were another story. They were incredible doctors: considerate, compassionate, and dangerously intelligent. But I spent a lot of time convincing them that I was entitled to know what was being done with my body and my life. I know I made them see that my opinion mattered, and I hope that I taught them something about the likes of 13-year-old girls.
Overall I went through 12 rounds of chemotherapy, 28 doses of radiation, and five surgeries. I was treated at Children’s Hospital in Omaha, Neb., and the Mayo Clinic in Rochester, Minn. After a year of treatment I was cancer free and have stayed cancer free to date, over twenty years.
Having cancer absolutely changed my life. I don’t think it changed who I am, but I do think it changed my view. I will forever be plagued by the side effects of the drugs that saved me, and I still get nervous when I find any lump or bump, but most of all I love and cherish the qualities I’ve acquired through the experience. It’s been said so many times in so many ways, but it’s best put in one word: Perspective.
I’ve since graduated from high school, college, and most recently law school. I’ve stood as a bridesmaid at some of my closest friends’ weddings, swum with dolphins, traveled to Europe and India, and cried over the loss of a loved one. I’ve experienced the thrill of getting my driver’s license, falling in love, buying my first home, and walking down the aisle to say, “I do.” I think all of these events would have happened regardless of whether the cancer had, but they were that much better after the fight.