Friday, September 12, 2014

And the genetic mutation goes to...

Great writers say, "Write what you know." I thought of these words as I sat through the day long Boston conference on Acquired Resistance of Lung Cancer, specifically designed for patients with genetic mutations: ALK, EGFR, and ROS1. With all the scientific chatter, I felt completely out of my element, as I believe many patients did. I was never a math or science person in school. I was in drama and loved literature, films and music. I went to art college where a very basic, dumbed down intro to math class was the only requirement. I didn't even take a science course in college. I had to find some way to relate...

I am a child of a celebrity obsessed culture. I grew up reading People magazine and watching E! News on a daily basis. My fascination grew as I realized I wanted to be a filmmaker. I related to celebrities in a way that probably wasn't all that healthy. In fact, I've been rehearsing my Oscar speech in my mind since before I could speak. It's always been my dream, therefore the actors and celebrities who lived that life became my heroes. Ever since I met Jon in college, I have often imagined us sitting front row at the Academy Awards. What I could not foresee, however, was us sitting front row at a conference discussing everything that is lung cancer. But there we were.

In the past year, many of the people in that room, the doctors and patients, have become celebrities in my eyes. I have read their blogs, looked at their family photos, and stayed up to date on their health. For me, meeting them was just as exciting as meeting George Clooney or Sandra Bullock. I felt like I knew them and here they were standing in front of me. So, my celebrity obsessed mind took over and I did my best to turn this experience into something more relatable.

The first "celebs" we met were our dear, dear friends, Andy and Leslie Trahan (aka Brad and Angelina). A beautiful, young couple raising three beautiful, young children. Andy was diagnosed not too long before Jon in 2013. Leslie and I have become close over the past few months. The entire Trahan family (including Andy's dad Phil, aka Big Daddy, aka Clint Eastwood) is generous, kind, and strong believers in their faith. Leslie is strong - in mind and spirit, and such an inspiration to all caregivers. Andy is gentle and soft-spoken, a great father who shouldn't have lc in his life. Meeting them in person was a dream come true. They know what we've been through, with no explanation, because they've been through it too. I am so happy to have them on our team! And look, in true Brangelina fashion...they made the cover:

Next, I met Tori Tomalia, who reminded me of Tina Fey. A mother of three and fellow lover of theatre, Tori was heading back to school to get her MFA in Theatre in hopes of teaching when she was diagnosed with stage iv lc. She is ROS1, positive, quirky, fun, and smart. She wants as much information as possible and has become a big advocate for ROS1ers and all young people with lc. She's not afraid of the statistics and isn't afraid to defy them either. Her and her husband are working to open an Improv theatre in Ann Arbor, Michigan and I just know this woman has great things ahead of her! Please learn more about her and her family by checking out her blog here: Lil Lytnin' Around the World.

I was also very happy to meet and connect with Corey Wood, a 22 year old athletic, college student recently diagnosed with ROS1. She is like Jennifer Lawrence: witty, bright and beautiful. Everyone thought she was there to support her dad, who would be the likely lc patient out of the two. Nope. During one break, we ran into each other and just contemplated how we got here...when many people our age are out partying, drinking, and living it up with no worries or cares. Reading her blog, Lunging it up: Fighting Lung Cancer at 22, is like a breath of fresh air. She is honest, brave, and funny, even in the face of cancer, as she candidly opens up about how she is managing this disease at such a young age.

One of the biggest celebrities in the room was Linnea Duff, who has been battling lc for going on seven years. Her blog, Life & Breath: Outliving Lung Cancer, was the first thing I read at the doctors office when we found out Jon had the ALK mutation. I remember thinking...she is alive! She has been through so much, but she is ALIVE! Right then, she became my friend and a beacon of HOPE! Linnea is like Meryl Streep, a chameleon who has rebounded and re-invented herself after each treatment. She is a trailblazer, having enrolled in clinical trials for drugs that are now the standard of care, oftentimes as one of, if not the first, patient! In person, she was more beautiful than I could have ever imagined. She was humble and gracious as I choked up in telling her how much she meant to us. She should be so proud of herself, because she has played such an important role in the advancement of medicines for lc, and she, along with other brave patients, deserve a big round of applause!

Finally, we had the honor of meeting Bonnie J. Addario, a fellow lung cancer survivor and one of the biggest advocates for all those diagnosed with this disease, no matter the age. Hearing her speak at the conference was uplifting and inspirational. She and her team at the Bonnie J. Addario Lung Cancer Foundation are doing amazing things and are determined to change the face of lung cancer. Unlike the doctors and researchers, who are often elusive because of their knowledge, she was personal with kind eyes and a lot of heart. She has been through so much in her own personal battle with the disease and she just gets it. She has lost family members to lc, fought hard herself through various treatments, and has devoted her life to helping others with the disease. To her, lung cancer is not only unfair, it's just plain wrong and she is doing all she can to fight for better treatments and eradicate the disease. In listening and speaking with her, I know for a fact that there is HOPE and a big change is coming. She held my hand and told me that a new study, Genomics of Young Lung Cancer with faces like Jon, Andy, Tori and Corey enrolled, will change the face of lung cancer just as Ryan White changed the face of AIDS in the 1990s. Bonnie is doing for lung cancer what Elizabeth Taylor did for AIDS, standing up and making a lot of noise, refusing to be silenced, until a real change occurs.

I still daydream of me and Jon at the Oscars, and I still believe that dream can come true, but for now, this is where we are. A part of me wishes we had never met any of these people. I wish lc wasn't a part of any of our lives. I wish we were all out living vibrant, healthy lives, raising children and grandchildren, chasing career goals and dreams. But here we are. And if we keep blogging and being advocates of our own health or the health of our loved ones, we will make a big difference, there is no doubt! And because of this, I no longer aspire to be like celebrities I see in the magazines. These patients, doctors, researchers and advocates of lung cancer are now my personal heroes and I hope you will take the time to get to know each and every one of them. And if you are moved to do so, please contribute HERE to Bonnie's efforts and become a part of the history that is making a BIG change in the fight against lung cancer.

Me and Jonathan with our dear friends Andy and Leslie Trahan (standing far right) with other lung cancer survivors and the incredible Bonnie J. Addario and team!

Sidenote: I just want to say a heartfelt thank you for all of those who read my previous blog and commented. Thank you so much. I do feel you holding me up and appreciate the love and support you so graciously offered. We have scans next week, so please join me in praying they are stable and no further treatment will be needed at this time. If that is the case, I will do my best to take a holiday from cancer; focusing only on the good things in life: Jon, Autumn, creativity and starting graduate school. Again, thank you for your love.

1 comment:

  1. Robyn, it was so great to meet you guys! I am actually working on a blog post trying to sum up what last weekend meant to me. Tina Fey?!? I love her! What an honor! Very best of luck on those scans, my friends!