Hi, my name is Lauren, or Lola as most people know me as, and I have cancer. I was diagnosed with retroperitoneal undifferentiated soft tissue sarcoma on December 17, 2009 when I was only 12 and a half years old.
After an MRI, CT scan, bone scan, plus a bone marrow aspiration the diagnosis was officially changed to "with mets to liver and lungs." After much discussion, the primary tumor, which was wrapped around the bottom of my spinal chord/tailbone, was deemed inoperable and I would begin a clinical trial with chemo and radiation.
Over the course of 10 months I had four different types of chemotherapy, 36 radiation treatments to my pelvis and was kicked off the first clinical trial because the surgery to remove the tumor at week 13 didn't happen. Over the course of the last two years, I've had one small period of six months where my status was NED (no evidence of disease), but as of this writing I have four small tumors in my lungs that are considered metastatic disease, have grown during certain chemo protocols and I am currently seeking opinions for non-toxic alternative treatment options.
Last year was my first time attending Stupid Cancer's OMG Cancer Summit for Young Adults. At one month shy of my 15th birthday, I dare say I was the youngest survivor there. It was also my first time in Las Vegas. While my parents are pretty progressive, it was one vacation that they always seemed to take without me and my brother, who is three years older than me.
For once, I was in a room with survivors that got me. From the get go, I've been treated at a pediatric hospital, on pediatric protocols, and may, by age, be considered pediatric, but I am far from it. The tables at meals were broken down into cancer types and I finally started meeting adults, people I could actually have conversations with, that had the same type of cancer as me.
Websites and forums are great, but nothing takes the place of a face to face conversation. The breakout sessions were amazing and they even had a few that my mother, as my primary caregiver, could go to and talk to other caregivers. Wanna talk about relationships and sex? They got you covered. Worried about careers and insurance coverage? There is a session for that too. I made some great friends that I am still in contact with to this day. We support each other in every way possible and this could have only been possible through joining the ranks of the young adult survivor community and Stupid Cancer.
Being out of school for the better part of the last three years has somewhat hindered my social interactions. On top of that, a year and a half after my diagnosis, my family had to move because of my dad's job. I found it difficult to make new friends at my new high school as an incoming freshman. I had missed half of seventh grade and all of eighth, not to mention I was walking with a slight limp/slap foot that was caused by neurotoxic chemotherapy. I was made fun of on a regular basis because of the way I walked and even knocked down in the hallway once by someone running to class and no one stopped to help me. My "old" friends can no longer relate to me and frankly, sometimes I get angry with them when they talk about how their life sucks. If high school were filled with all my friends (and future friends) from Stupid Cancer, then I wouldn't be so hesitant to go back full time. I tell everyone (and so should YOU!)
I you know someone between the ages of 15-40 diagnosed with cancer, they MUST check out StupidCancer.org and undoubtedly sign up for the OMG! Cancer Summit.
I already have a couple of my friends here in Reno that will be attending, representing the youngsters of the young adult cancer movement. A cancer diagnosis can be very very lonely, but it doesn't have to be when you have Stupid Cancer.