May 2019 Update
So, I am starting from scratch. With Ellen’s support, I figured out how to get my mother’s medical records so that I can start to fill in our pedigree. Working for mCG helped me to realize that this information is empowering, not threatening. You know what’s scary? Not having all the facts. This past January, I had my first child – a happy, healthy baby boy. As a new mother, understanding our family medical history feels more important than ever. I want to make sure my son has the knowledge he needs to make the best decisions possible for himself.
In 6th grade as I was walking back from gym class, my guidance counselor was standing in the hallway calling my name. She took me back to her office and explained that my mom had been diagnosed with cancer and needed to have an operation. My mom had surgery and a big scar across her back, was in the hospital for a couple of weeks, took time off from work to recover, and then life went back to normal. It didn’t seem like a big deal at the time, but I found out later that she had lung cancer and a tumor the size of a softball removed along with two-thirds of one of her lungs. I was never told that there was a high probability that her cancer would recur.
Ten years later, a few weeks before my college graduation, my mom told me that she needed to have another small operation. She said a recent scan had found a tiny little “something” on her lung. I started to cry and she said that her oncologist had assured her it was small, early, and she was going to be fine. A few days later my brother called to say that my mom’s cancer was in some of her lymph nodes and that she would need chemo and radiation in addition to surgery. She started treatment the day after my graduation and passed away five months later, days after her 56th birthday.
If my description of my mother’s illness seems vague, unscientific, or perhaps medically inaccurate, that’s because I really have no idea what I’m talking about. When my mother first got sick I was only 11 years old. I was 21 when her cancer recurred and, in theory, fully capable of understanding the situation. Yet. more than ever, I avoided the hard questions. Throughout her whole illness and treatment it never occurred to me that she was going to die, even though she became sicker and sicker. Looking back, I think this was a combination of deep denial and my family’s attempts to shield me from the grim reality. I had no capacity to process or deal with any of it – so I hid. I spent a lot of time away from home and avoided all conversations about my mom being sick — until I couldn’t. One day my dad called to say I needed to come home and say goodbye to my mother.
I met Ellen Matloff and started working for My Gene Counsel in the fall of 2014, as the Communication Lead. Although I was interested in the health, wellness and cancer fields, I was hired for my skills in writing and marketing. I knew very little about genetics, hereditary cancer syndromes, genetic testing or genetic counseling. It feels to me that we were fated to meet.
The more I learned, the more I realized how important it would be for me to piece together my family’s medical history. There are gaping holes in our family pedigree. I know my mom had two additional surgeries when I was in high school – a hysterectomy and a removal a kidney – but I still have no idea why these were necessary.
So, I am starting from scratch. With Ellen’s support, I figured out how to get my mother’s medical records so that I can start to fill in our pedigree. Working for mCG has helped me to realize that this information is empowering, not threatening. You know what’s scary? Wandering around clueless in the dark. In a few months I’ll be married and ready to start my own family. I want to arm my future children with the knowledge they need to keep themselves healthy and to fully understand their family history.
I spent a long time avoiding the hard questions. Today, on Mother’s Day, I’ve decided to look forward, do some research, and take control. If I’ve learned one thing from this whole experience it’s this: knowledge is power, and information is everything. I think my Mother would be proud of me.
By Samantha Grasso