The Curse

Good Morning,

Last night Jon and I went to a wonderful dinner with friends and I woke up this morning thinking about how important it is for creative people to get together and talk. Talk about their work, their goals, their hopes and fears, etc. Our souls were filled.

Because of that, I wanted to share one of my favorite videos set to one of my favorite artists, Josh Ritter. It truly is lovely. I am thinking of using puppets for my thesis film, so it gives me much inspiration. Shortly after Jon was diagnosed and in the midst of chemo, we had the opportunity to see Josh Ritter in concert at The Variety Playhouse. Magical doesn't even begin to describe the experience. It happened at precisely the right moment in our lives and was such a blessing. I'll never forget Jon holding me as Ritter played this, The Curse, one of my all time favorite songs.

This morning, my mind is also with others who are not doing so well. There are several in the lung cancer community who are going through really tough battles. I am praying they get the medicine they need and get through this. Please join me in prayer for them, and for all others battling disease, war, poverty, heartbreak or other struggles. Each day is truly a gift - whether you spend it traveling from one city to another or on your couch in your pajamas watching The Voice - there's beauty in that too :) Every moment is precious and we have to soak it up.

Have a peaceful and blessed Sunday!

Love,
Robyn

The Art of Inspiration

I want to say a big thank you to everyone that kept us in your thoughts and prayers this week. I'm very happy to say that at Jon's doctor appointment this morning we got good news!


Jon put on The Lego Movie when we got home...a perfect way to decompress from a stressful week. Last night as I was driving home from my class, the "everything is awesome" song was stuck in my head. (I'm sure those of you with kids are very familiar with this song!) It ran over and over and over, until I finally realized....yes!...today, everything is awesome! And I thank God for that.

Another awesome bit of news is that I've finally started my journey of graduate school and I love it! It makes me feel worthy again, and we should all feel that way, because we all have so much to give. With getting my MFA, I am really focused on the path of teaching. I feel like I've resisted it for so many years, but have come to understand it is my true calling. Jon and I have started coming up with new and unique classes I can teach in film. One being a course on Southern cinema and another just focused on teens in film, studying The Breakfast Club and Pretty in Pink (how fun!). After I came home and reported back to him on every last detail of my class and what it feels like to be a student now in 2014 as opposed to 2005, we came up with a new course, (he gets sole credit for the name), The Art of Inspiration.


In our culture we are taught how to be negative, to critique and judge, and it seems as if it has gotten worse in the past decade since I started my undergrad. I think, what we need to teach students is how to like, no LOVE, something...whether it be a film, song, book or painting...we need more passion as opposed to indifference. Reality shows and competitions are too celebrated in our society. Like Billy Bob Thornton ingeniously said (and I'm paraphrasing), "We can have a show about cupcakes. Fine. But does it have to be competition? A cupcake WAR? Because making a cupcake is not all that dangerous!" It's so true! Therefore, Jon and I are committed to our inspiration class where we require students to become inspired by all that is around them and let them know, "hey, it's OK to like something every once in a while." And I've been feeling so down lately, I thought to myself, why wait until I can teach the class? How about I start right now. Because inspiration is around us at all times. No matter who you are or what you do to fill your days. Let yourself be inspired!


I'll close with the inspiring words from one of my favorite poets.

Daffodils by William Wordsworth

I wandered lonely as a cloud 
That floats on high o'er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;
Beside the lake, beneath the trees,
Fluttering and dancing in the breeze.

Continuous as the stars that shine
And twinkle on the milky way,
They stretched in never-ending line
Along the margin of a bay:
Ten thousand saw I at a glance,
Tossing their heads in sprightly dance.

The waves beside them danced, but they
Out-did the sparkling leaves in glee;
A poet could not be but gay,
In such a jocund company!
I gazed—and gazed—but little thought
What wealth the show to me had brought:

For oft, when on my couch I lie
In vacant or in pensive mood,
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils.

Have a great weekend!

With love,

Robyn

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.

Yes, I'm Ok...

but no not really.


Please read the fine print.


In 2010, Jonathan and I were living in New York City. He had a fancy internship at an indie film company and I was in an intensive program studying acting. We were young, fresh out of college and ready to conquer the world. On a hot summer day, we decided to visit Times Square. I thought I'd love it. The people. The lights. The busyness. It would feel like the center of the world.


I absolutely loathed Times Square. I was utterly lost and overwhelmed by the people, the lights, the busyness. Once inside, we were trapped. For a girl who grew up in the middle of a peanut field with no trace of human life for miles and miles, I panicked. Too much information was coming at me all at once. The billboards. The scrolling news feeds. The people running you over you in every direction. I held onto Jon's hand so very tight, relying on him to guide me out of this chaos. This mess. This hell. Many times people would come in between us. Our hands would break and I could barely see him among the crowd. His head bobbing in a sea of strangers. I made a vow to myself right then and there. I would never come back.


When I started this blog a few months ago, I didn't want it to be all about cancer. In fact, I really didn't want it to be about cancer at all. I wanted it to be about our love, our creativity, and our films. As the weeks went on, I found it hard to post. I didn't have any material. The reason? All I ever think about is cancer. Cancer. Cancer. Cancer. How in the world was I supposed to blog my thoughts and feelings not about cancer, when all I ever think about is cancer. Jon has cancer and there is nothing I can do to change it. He is 28 years old, young, talented, smart, a never smoker, and otherwise perfectly healthy and he is living with stage iv lung cancer.


To put it into perspective, my brain looks like Times Square. Except the billboards and newsfeeds are all replaced with information on lung cancer. Information on the newest clinical trials, science, statistics, etc scroll around and around in my mind 24/7. It is insane. The billions of people running me over are doctors and articles, pushing and pulling me in every direction. Which way do I go? This pattern of thinking never ends. Lately, it has become a severe problem and I am unable to sleep. These thoughts, just like the people, come in between me and Jon. Sometime, it's difficult for me to see him in the crowd. To see what really matters. I have become a victim of my constant thoughts, the disease I carry inside my mind.


This past weekend, Jon and I were fortunate to attend a seminar all about his specific type of lung cancer. It was very information and offered a great deal of hope for the future of science and medicine. Basically, if you're going to get lung cancer, now is the time to do it. A few short years ago, with this diagnosis, Jon wouldn't be here today. Medications are coming, in form of clinical trials and petri dishes, that will continue to help save his life and offer us a future! Wonderful news! And I will post more about this specific experience in my next blog. However, I couldn't help but feel helpless sitting there, all day, listening to very smart people talk about scans, statistics, and a lot of other stuff I couldn't comprehend. It was scary. How did we get here? We were loving life and working on our goals of becoming successful artists. I didn't worry about starting a family, a dream of ours, because we had plenty of time for that. As I sat there, I wanted to grab Jon and run away into the sunset a la Charlie Chaplin and Paulette Goddard at the end of Modern Times.


I was also very afraid of how he was taking in all this information. As a caretaker, I have tried to shield him from as much of this as possible. Filter it. I have taken on all the research, the good and the bad. And here we were, in the very front row, and it was right in our face. No turning back. No wishing this wasn't in our life. No running away. I looked over at his precious face and I just wanted to take him in my arms and hold him. In fact, I could feel everyone's pain in the room. Their uncertainty. Their hope. Their fear. And I wanted to take each and every one, the patients and the caregivers, in my arms and hold them. But that still wasn't enough. I wanted to transform into a beautiful angel with giant wings and hold the entire room in my arms. But if I could do that, I thought, who would hold me?


There are many wonderful blogs that deal with lung cancer. The people behind the blogs have become my personal heroes. Many are patients, brave enough to honestly chronicle their thoughts and feelings and putting their (many times young) faces on lung cancer. As a caretaker, I feel an incredible responsibility to address depression and how it can overcome someone who has dedicated their life, their existence, to saving the life of the person they love. Depression has become a very real part of my life since Jon's diagnosis. I see a therapist weekly, a concept foreign to me before cancer entered our life. I take medication. And I use essential oils to help combat the downward spiral of depression. Many days, I feel like a walking open wound. If you look at me, I'll fall apart in a mush of tears. Some days, I consistently "leak." Tears just stream down and I can't even tell you what has brought them on. I try to keep my head above water, and do so because I love Jon and want to shield him from my own depressive thoughts, but sometimes it becomes difficult. Lately, we've even looked into a retreat of some kind where I could go to deal with this trauma in our lives. Talk with specialists and others patients infected with depression. I am not at that point yet, but depression in patients and caregivers is a very real issue that needs to be addressed. I do believe there is a lot of hope. He is on medication and today, he is doing well and we are happy. But as 20somethings, this is not how we saw our life.


I have looked to God to help save me from depression. To save us from cancer. In fact, I haven't stopped at my Christian God. I have called upon all the Gods in all of history and summoned all religions and spiritual beliefs to help us cope with this. I have prayed and meditated. I have learned of Buddha and the teachings of suffering. I have looked at philosophers, poets, and historical figures who have dealt with tragedy. In doing all of this, I realized that I am abusing myself with thought. Thoughts of cancer and thoughts of death. I am dress rehearsing tomorrow and missing out on today. The here and the now. The Jon that is doing well, fighting hard on targeted therapy, with options to try in the future. Maybe our love story will not have a tragic ending. I am coming to terms with the fact that all life ends in death. Jon has lung cancer, but each and every human being will die in some fashion or another. Life is a terminal condition. And death. What if it doesn't have to be a bad thing? Feel like a punishment? Is it really losing to a battle? What if it's beautiful. What if the punch line to this joke of life is that the one thing we've all been dreading and fearing, is actually the best thing that will ever happen to us.

The Misfits

Was our love a mistake?

Too grand for this simple planet?

Too other worldly for their simple minds?

Perhaps we were meant to meet as angels

In a dimension more competent for a love so strong,

But by chance, currents moved and winds were shifted,

Two of God's holiest creatures accidently met on Earth.

Erupting the world set in ordinary

And forcing it to contain a vitality that is extraordinary.

If wings be granted to one before the other,

Know that one day united forever

We will be

And this time in a land that can hold

All that is the beauty

Of our perfect love.

-Robyn Hicks