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.
July 9, 2001, is a day I’ll never forget. I was 27, married with two children, the youngest just nine months old. I went in for surgery to remove a “swollen gland” and woke up to find myself at war. I had cancer, Ewing’s Sarcoma, an aggressive kind, I was told. A fight for my life was ahead of me and I had to prepare.
I had to make decisions I wasn’t ready to make, like did I want eggs harvested so I could have more kids, because the harsh regimen of chemotherapy likely would render me sterile. I didn’t know; I had never thought about it before. Suddenly the thought hit me. I’m not sure if I want more kids, but I am desperate to stay alive for the two I already have. Shock and fear turned to fierce determination. I was going to kick this thing and I was going to do it once. I asked the doctors to give me all they had. I hadn’t signed up for this war, but I was in it. All in.
I took a leave of absence from work to focus on healing. I had an incredible support system of friends, family members, and co-workers who made helping me through this, fighting by my side, their priority. I endured a year of chemotherapy — one week on (24-hours-a-day), two weeks off. I lived life in three-week increments. One week of illness and nausea. One week of weakness. One week of feeling okay and getting myself ready to start the cycle again.
I slept more than I had ever slept in my life, sometimes 18-hours a day. I got up every morning and told myself I could do it, whether I thought I could or not. Oddly, one of the hardest things about it was preparing myself and my three-year-old daughter for the fact that I would lose all my hair. No eyebrows. No eyelashes. No arm hair. No leg hair. I felt sub-human and non-feminine. Upside, no shaving. Downside, I looked like a teenage boy with the pale skin of an alien. I didn’t feel pretty, but I always felt loved. The first day ALL my hair was gone, I remember sitting in my bedroom, swimming in a sea of self-pity. My husband walked in the room, held me and kissed my bald head. I was loved and I had to fight.
There were hard times; moments I felt would never end to let me through to the other side. This was not a battle won with flare or grace, but with grit and persistence. I would spend time envisioning things in the future that I wanted to be part of...dancing at my daughter’s wedding, seeing my son graduate, taking strolls on beaches around the world with my husband. I tried to see myself there, being part of the picture. Having a future. Living a full life. I had to believe it could of happen.
As I reach another milestone this July, 17 years from that fateful day, I am forever grateful for every day I see my kids (all three!), every arm-in-arm stroll with my husband, every sunrise, every spring, every thunderstorm, every breath, every experience in this wonderful life. I did make it through, and I am a different, more determined person for having been through it. Never lose sight of all you have to live for; it will give you the courage and the strength to get out of bed and take that next step forward, to fight the war you never signed up for.