One hot summer day I was in my backyard, and had just climbed out of the swimming pool, bending over to grab my beach towel when my mom startled me by yelling “Lisa, bend over again!,” which I did and she walked over to me and rubbed my right shoulder blade with her hand. She told me there was a lump about the size of a golf ball. She said we needed to call my doctor.
Dr. Hanley said it was most likely a cyst. However, he did say it needed to be removed. He referred me a surgeon with zero personality and an awful bedside manner. Before I knew it the day had arrived. I do not remember much about that day. I know we arrived early and when we left the hospital it was daylight and my back hurt. That was it! Apparently, Dr. Shearer told my mom to bring me back to have my stiches removed.
Ten days later my mom and I arrived at Dr. Shearer’s office to have the stitches removed. After he removed my stiches he told my mom that the pathology report came back and showed that my tumor was a sarcoma. He quickly left the room as my mom looked at me and I said “mom, what is a sarcoma?” My mom shrugged her shoulders and we left the office feeling confused as neither of us knew what a sarcoma was.
I do not remember the exact moment I learned I had cancer. One would think hearing the news that you have cancer would stick in your mind forever, like you would remember every detail of the moment, like where you were, what you were wearing, what time of day it was. Not me, I am a fan of denial. What I do remember is my mom crying in the car. One thing about my mom is that when she cries I cry and I do not even have to have a reason. It has been that way as long as I can remember. So, as I watched and heard her cry, I started to cry as well.
Next thing we did was go to Children’s Hospital of Los Angeles. We had a consultation with the doctors there. I recall my dad yelling at the doctors as we left the hospital. He yelled “I will not accept that!” I was told later he was replying to their suggestion that there was really nothing they could do to extend my five-year survival rate past 10%. That is right, they told my parents that 12 other children were diagnosed with my rare sarcoma and none of them had lived past five years. It made my parents angry and seeing my dad yell always filled me with dread.
Next stop Long Beach Memorial Hospital with Drs. Finklestein and Groncy where we had yet another consultation. I do not remember anything they said that day except for the word camp. They told me I would be able to attend a camp for children with cancer. I never heard another word after that. I was so excited to be able to go to camp. As their mouths moved discussing boring things like survival rate, chemotherapy, 18 months and radiation, I asked myself when is camp, what will I pack, what will I do, what if nobody likes me? My brain was absolutely thrilled with thoughts of camp. I always wanted to attend a camp but my parents were so overprotective I was never given the option.
Immediately following my doctor appointment, I went straight to the hospital for a week. My mom lived an hour away and had two-year old twins. I did not receive many visitors. I called home every night in tears wondering when I could go home. I did not know that my life was going to become hospital visits and chemotherapy for the next 18 months. I did not know that my world would turn upside down and things would never be the same. I never imagined that I would learn words like chemotherapy, broviac, Heparin, undifferentiated sarcoma, Thorazine, Adriamycin, etc. I had no idea I would start learning to self-soothe and to hold my tears in, to be a “big girl” and to complain as little as possible. That was the day of a new journey; one that was filled with good, bad, pain, happiness, loneliness, dread, fear and friends. That was the first day of the rest of my life!
Lisa...I'm so glad you beat the odds! Your a strong, courageous woman! Thanks for sharing your story. xoxo, Theresa
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