During Corey’s senior year at NYU he lived in a small one-bedroom apartment in Brooklyn Heights with a classmate of his named Danielle. During the year that they lived together they became very close (partly because their apartment was so small) and have continued to keep in touch even though now they live on opposite sides of the country. Mark and I never got the chance to meet Danielle, but we’d heard a lot about her from Corey over the years and she started following my blog after I was diagnosed. On an early blog post I mentioned that I was grateful for the smell of lilacs and then one day a beautifully-packaged lilac-scented candle arrived in the mail. It was from Danielle. A few months later another one came and then another and then another, each with a beautiful note attached.
I would like you to know that you have hugely impacted my decisions since the moment I received my result. A positive BRCA1 gene mutation leaves me with an 87% lifetime risk of breast cancer and a 44% lifetime risk of ovarian cancer. In that moment, one of my first thoughts was of you. I had to consider: If someone had told Rosemary before she was ever diagnosed that she was at risk for this terrible disease and that if she removed her left arm/right foot/whatever it may be, it would decrease her risk to 1%, would she do it? I have to imagine the answer would be yes.
As life-altering and devastating as these circumstances are, I count myself so, so lucky that the research and ability to determine this gene mutation does exist so that I can do everything possible to prevent cancer from invading my body at some point in my lifetime. It breaks my heart that this is not available to you and I hope with everything in me that someday a cure or genetic blocker is discovered for ALS.
All this said, I want you to know that while I am enduring these procedures to safeguard my future and that of my future family, it is also in large part as a tribute to you; as well as to the mother of my dear friend Meghan, who lost her battle with ALS in 2006; and to my cousin Olivia whose diagnosis and illness allowed me to be proactive in my own treatment.
Thank you for inspiring me, and so many others, every day.
Thank you for sharing this part of your life with me. I wish I could sit down to talk with you and give you a hug. You seem to be so brave with the decisions you have made. Wow, I’m in awe of you. Now you are entering into a world that may be foreign to you, at least it was for me. My new world caused me to be an emotional mess but after the ALS shock sunk in I began to see unbelievable love and beauty. Love and beauty I hadn’t fully seen before.
I will continue to pray for you. Please keep us posted.