New Decade, New Role, New Study

Most people dread their 30th birthday.  It represents an end to the youth, adventure, and possibilities of their 20s, and thrusts them into a new chapter of adulthood, maturity, and responsibility.  Yet as I [Emily] recently turned 30 years old, I felt nothing but joy and gratitude.  When you’re faced with a Stage IV cancer diagnosis and your own mortality at age 28, each following birthday is simply icing on the proverbial (30th birthday) cake.

Emily Turns 30

Turning 30? Nothing but smiles!

I have so much to be grateful for in reaching this milestone birthday: an oncologist and surgeon who were willing to help me fight for a cure, a team of family and friends and doctors who rallied around me, and a seductive affair with NED for more than a year now.

As I celebrate being 30, I cannot help but think of all the others battling this disease.  Throughout this process, I have met countless other young lung cancer patients.  Like me, they all check the boxes of someone you’d never think was at risk– young, healthy, athletic, non-smokers.   And yet here we all are with a potentially terminal disease before the age of 40.  Unfortunately, we are not anomalies, but rather represent an alarming trend.  Oncologists and researchers are bewildered by this group of diagnoses.  What is the root cause?  Is it genetic?  Is it due to radon?  Estrogen / testosterone?  Pollution?  Birth Control? Pesticides?

Perhaps I am simply acting 30, but I feel a sense of responsibility toward this group.  I want to find answers.  Not only to reduce my own risk of lung cancer recurrence, but to prevent the next 20-something from being stripped of his or her own youth, adventure, and possibility too soon.

This is why I’m going to participate in the upcoming Genomics of Young Lung study with the ALCMI (Addario Lung Cancer Medical Institute).  They will be collecting tissue and blood samples from patients diagnosed under age 40 in order to study them and provide new insight into lung cancer biology.  The hope is that we may find common, genome-defined subtypes of lung cancer that may be inherited, and thus develop targeted treatments for individuals carrying these subtypes.

It's official!I am passionate about this ground-breaking study which will focus on young lung cancer, and I am beyond proud to announce that I have officially joined the Bonnie J. Addario Lung Cancer Foundation team as the Spokesperson for this Genomics of Young Lung study.  I am so grateful for this opportunity from Bonnie, and will try valiantly to follow her superb example of what it is to be an ass-kicking lung cancer advocate.  So please prepare yourself for more posts and videos of me sharing my story at various lung cancer conferences around the world, and helping to raise awareness for BJALCF’s incredible efforts in the lung cancer field!

Much Love.  Live in the Moment.
Emily

Info on the Genomics of Young Lung Study: The Genomics of Young Lung (GYL) study is a revolutionary investigation into lung cancer. The GYL study looks to unlock two critical pieces of information: 1) how to properly treat young lung cancer patients and 2) how to determine who is genetically at risk in order to provide early screenings. Most importantly, the GYL study will move the lung cancer community another step closer to ensuring that other patients like Emily continue to reach the significant milestones in life.

To donate to the Genomics of Young Lung Study, click [HERE].  

If you were diagnosed under the age of 40 and would like more information on participating in Genomics of Young Lung, please email info@lungcancerfoundation.org.

Brian Kissinger, diagnosed Stage IV at age 33.  Currently on targeted treatment and doing well.

Brian Kissinger, diagnosed Stage IV at age 33. Currently on targeted treatment and doing well.

Eliabeth Hicks has two small children, and was diagnosed at age 28, Stage IIIa.  Like Emily, her treatment included surgery (lobectomy), radiation, and chemotherapy.

Elizabeth Hicks has two small children, and was diagnosed at age 28, Stage IIIa. Like Emily, her treatment included surgery (lobectomy), radiation, and chemotherapy.

Erik Hall was diagnosed at age 30 and his treatment course was much like Emily's, including surgery (lobectomy), radiation and chemotherapy.

Erik Hale was diagnosed at age 30 and his treatment course was much like Emily’s, including surgery (lobectomy), radiation, and chemotherapy.

Jill Costello - the namesake of Bonnie's sister foundation, Jill's Legacy - was only 21 years old and the rowing captain at Berkeley when she was diagnosed. Sadly, Jill lost her life at the age of 22, but her legacy to "Beat lung cancer - BIG TIME" lives on.

Jill Costello – the namesake of Bonnie’s sister foundation, Jill’s Legacy – was only 21 years old and the rowing captain at Berkeley when she was diagnosed. Sadly, Jill lost her life at the age of 22, but her legacy to “Beat lung cancer – BIG TIME” lives on.

Mark Costello (no relation to Jill) was diagnosed Stage IV at age 33. He has undergone chemotherapy and targeted treatment, and here he is with his family on vacation just 4 months after his thoracotomy surgery.

Mark Costello (no relation to Jill) was diagnosed Stage IV at age 33. He has undergone chemotherapy and targeted treatment, and here he is with his family on vacation just 4 months after his thoracotomy surgery.

Tori Tomalia was raising 3 young kids when diagnosed at age 37 with Stage IV. She is on targeted treatment and doing well.

 

Emily’s lung cancer “twin” Natalie DiMarco was given a similar diagnosis to EmBen’s when she was 32, just days after her daughter’s 1st birthday. She and her family are big BJALCF supporters, like here at the annual 5k in San Francisco.

Taylor Bell Duck was diagnosed Stage I at the age of 21. She underwent surgery and has been NED for 6 years now.

Taylor Bell Duck was diagnosed Stage I at the age of 21. She underwent surgery and has been NED for 6 years now.

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13 thoughts on “New Decade, New Role, New Study

  1. Happy Birthday Emily! Love and best wishes to you, Miles and your whole family. We are continually amazed by you all. Cheers! E&J

  2. We’re so proud of you Emily! You’ve grown so much through this process and have certainly found your calling in this new position with Bonnie. Love you
    Mom and Dad

  3. Happy birthday, and congrats on the new role as spokesperson! You’ll be awesome. Looking forward to great things from the ALCMI “Young Lungs” Study. (Why am I thinking of Kiefer Sutherland?)

  4. Emily – happy, happy 30th birthday. Thank you for your continued dedication to “paying it forward” to help others. You are so inspirational. Thinking of you and your journey often!
    Gay Meyer

  5. Dear Emily, We can’t think of a better spokesperson and patient advocate for young lung! You, like Bonnie, are going to kick-ass!! xoxox, Evy & Neil Schiffman

    **************************************************************** “Hope is the thing with feathers that perches in the soul. . .” ~ Emily Dickinson “After the ecstasy, the laundry. . .” ~ Jack Kornfield

  6. I can’t imagine a better spokesperson for this important initiative. Congratulations on the new position…the GYL study sounds fascinating. Can’t wait to learn more.

  7. Congratulations on turning 30! I too am so grateful for each birthday. This new study is very exciting, and I am so thankful for all you do for the fight against lung cancer.

  8. Love hearing about your appreciation for life Emily. These posts are wonderful to read, extremely humbling and so inspiring.

  9. Congratulations Emily on your big “30” and your new job. You are a fantastic example of taking
    a devastating surprise… to endless study and research.. to hard work (surgery and recovery)…to a happy outcome. Best wishes for a wonderful and productive and happy new decade. oxxogh

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