Update – See Life Break Through

Hello All ~ It’s been awhile!  Turns out, 3-year-old twins keep you pretty busy!

This blog originated in 2012 as a vehicle for updating family and friends of my diagnosis and treatment. However, it soon morphed into a story of inspiration for other lung cancer patients. My journey was an arduous one, but I was beating nearly insurmountable odds, and this gave hope to both newly diagnosed patients and those undergoing debilitating treatments for this disease. Since receiving my stage 4 diagnosis, I have been in contact with many patients through this blog, and it has become part of my life’s purpose to help others with advice, contacts and emotional support.

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Hope left, Maggie right. We found out at 14 months, to our surprise, that they’re identical – a 0.5% chance. Still almost can’t believe it – except when I see that hair!

I am enormously blessed to be here, to have Miles, my health, and now my girls. And I am constantly reminded of my good fortune as many friends continue to lose their lives to this disease. I mourn them and I mourn for their families. And, quite honestly, it has made me reluctant to post when my life has improved while others are struggling.

But then I remember what it was like to receive that devastating news seven year ago. How the first thing Miles did was look for stage 4 lung cancer survivor stories to inspire me…and how he came up empty.  So it is important to express my gratitude and share my success. Yes, the lasting side effects from my treatments are significant, but I am here.  With this blog, I want to share hope – hope for life after cancer, hope for NED, hope for — dare I say it? – a cure.

This past weekend I went to Chicago for Amgen to share my story for this video (also below) at the annual ASCO (American Society for Clinical Oncology) Conference.

Atlantic Live AmgenAt the event I was honored to share the stage with many amazing survivors and caregivers, as well as Christophe Bourdon, VP and GM of U.S. Oncology Business at Amgen. Christophe and I interviewed each other, and it was inspiring to hear how Amgen works to include the patient perspective in the work they do.

Enjoy the video (278,000 views!!); I am so happy with how it turned out. Hope & Maggie make a few appearances, and I might be biased, but I have to say: they nailed it 😉

As always, I want to give thanks to all of you who participated in my fight.  Team EmBen continues to be the greatest support network a girl could ever ask for.

To all new patients who have been diagnosed and are reading this, I want you to know you are not alone.  Feel free to contact me through the blog – I am always available to you.

Much love. Live in the moment.

EmBen

Love you, Rick

I don’t want to be writing this post.  I don’t want to be sitting here, wiping tears away with a nearby burp cloth, and mourning the loss of another friend, taken too soon by lung cancer.

rick-emben-editsI’m not sure I can put into words the bond I shared with Rick Moeller.  He was like a father-figure, a friend, and a fellow fighter, all rolled into one. We were comrades on this journey, always encouraging, ever-positive. I believed with everything I had that we’d be there, together, paddling the waters of his beloved Florida Keys in kayaks, riding off into a lung-cancer-free sunset.

But my heart breaks today. Rick is gone, and I just can’t help but feel that this is so WRONG. How is it possible that so many healthy, wonderful, kind people like Rick are being taken from their loving families by lung cancer? Fathers. Mothers. Brothers and sisters, husbands and wives. So many of us are dying – how can we make it stop?

I don’t have the answers today – mainly, I just have tears and confusion.  But I do have one thing we can do to help, and I would consider it a personal favor if you joined me in this fight:

Join my team, Team EmBen + Rick, for the San Dimas, CA Bonnie J. Addario Lung Cancer Foundation’s 5k event on Sunday, February 12, 2017.

If you can’t come in person, please donate.  If you can be there, please join with me and my family on Team EmBen + Rick to show your solidarity against a disease that attacks without reason, takes without justice, and must be put to an end.

Thank you for your support.  I know we all have so much going on – Thanksgiving next week, Christmas/Hanukkah shopping, the flu, school work, job stress – but please take an extra moment tonight to appreciate those most important things in life – those you love.  And please – join me in this fight. (Click HERE to join our team – make sure to join an existing team, “Team EmBen + Rick” – or HERE to donate).

Tonight I’m sending a special hug and so much love to Karan, Dylan, and Chelsea Moeller.

Much love. Live in the moment. Stay Rick Strong.

EmBen

Cover Girls

I am honored to share with you our Cancer Today cover story! cancer-today-coer

Over a year ago, Senior Editor Marci Landsmann read my surrogacy blog post, and contacted me about telling our story. She wanted to focus on our quest for fertility throughout our cancer journey, and after a few interviews, said she’d be in touch for an update once our future children were born.

Shortly after Maggie and Hope arrived, Marci reached out again, and talking with her was like catching up with an old friend. I am extremely grateful for the candid, beautiful, poignant way she told our story.  I’ll admit she made me cry…several times. This story will forever be cherished by our entire family, but it will also provide courage and hope to cancer patients as they struggle to realize dreams of their own families. Thank you, Marci.

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Hey girls, look what came in the mail today!

Also a big shout-out to the photographer, Dawn Bowery. This lady is a rockstar. She and her assistant, Marion, made the shoot so fun, dealt with 2 squirmy three-month-olds, and managed to capture some gorgeous photos of our family. Thank you, Dawn.

I am continually amazed where this journey has taken us.  Thank you to Cancer Today for making this moment possible!

xoxo – EmBen

 

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Mommy reads while the girls devour the article.

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Hope (L): “Wow, Mommy – this is amazing!” Maggie (R): “Check ‘cover girl’ off my bucket list!”

 

For My Love

When I met my husband, Miles, in college, I was independent, carefree, strong-willed. I wanted a career, and I wasn’t sure marriage or children fit into that. But Miles – he made me laugh like I’d never laughed before. And that’s all it took. His desire for a whole basketball team of kids running around was infectious, and within weeks of dating I knew he was The One.  I was lucky that he felt the same, and am so grateful this streak of luck continues all these years later.

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Miles carried me across the threshold of the little cottage we rented after college.

After college, we moved in together, and I got that business-suit-wearing career I’d always dreamed of. Throughout our 20s we worked hard and played hard, enjoying our “kid-free” time.  We got married at 26, and agreed to take a few years to soak up married life, getting in as much travel and adventure as possible.  

When we were 28, “the plunge” was something we were both ready for. Sure, it wasn’t easy giving up the idea of our carefree life, but together, we were ready for the change and responsibilities that a family involved.

Kickin' Cancer's AssInstead, we got cancer. I say “we” because when I was diagnosed with Stage IV non-smokers lung cancer, I never once felt like I was on my own. This diagnosis affected both of us, and every step was made together. Sure, I was the one with the chemo IV in my arm – but Miles was the one lugging half our house into infusions in order to make me more comfortable: a laptop for movies, earphone splitter so we could laugh at comedies together, pillows and blankets for comfort, water and snacks.

Miles allowed me to focus on my treatments, and on beating this beast, while he took care of literally everything else.  He continued to work, but cut back his hours so he could be at every appointment, furiously taking notes and asking questions. He stayed up long after he’d tucked me in – where he guided me through meditation to ask my body to kill the cancer – and would research obscure medical journals from around the globe in search of new treatment options for me.

9.9.12 NED

Only 2 months into treatment, Miles made this doodle for me, depicting my oncologist, Dr. Reckamp, telling me “Emily, you are NED!” At the time, this felt SO far away. A pipe dream. But, Miles believed this was our future; that faith gave me the strength to make it our reality.

He refused to believe the dire predictions of my diagnosis, and shielded me from all the scary statistics. He knew I needed mental peace in order to win this battle, and I trusted him enough not to consult “Dr. Google” on my own. He scheduled second and third opinions, held my hair back as I hugged the toilet bowl, and got me triple chocolate protein shakes when his research showed that I needed to gain some weight before starting chemo. He called those extra pounds my “chemo cushion” and believe me, I wasn’t complaining.

If I was sick, Miles forewent his beloved Steelers football Sundays. If the only thing I was craving was English muffins and applesauce, he’d drop whatever he was doing Hospital_1to go to the store. He made sure our beloved pup, Ginny, was always on hand to snuggle with me on those particularly difficult days. Even though it doesn’t come naturally to him, he accepted the help that family and friends were offering, knowing that it would help him be a better caregiver to me. When we found out I was allergic to the flowers friends were sending, he contacted our amazing support network to thank them, and request that any further gifts be non-floral. He carefully taped each and every get-well card I received onto our dining room walls, creating a wallpaper of hope and encouragement.

I owe the past 3 cancer-free years to my loving husband. He scoffs when I say this, as if his role has been minimal simply because I was the one getting poked and prodded and poisoned. But his role was anything but minimal. He found the surgeon who would operate on me when no one else would, giving me the cure we desperately desired. When radiation knocked me for a loop and I couldn’t get off the couch for months on end, he nursed me back to health, cheering me on as I took each small step toward recovery.

Miles decided, each day, to take some part of the burden off my shoulders.  He never gave up hope, even when the odds were so stacked against me. He never hesitated, even when we had no idea what the future held, or what life after treatment might look like.  He kept his promise that “cancer would never take one day away from us” by never letting me doubt, and always filling me with hope.

And through it all, he continued doing what he does best: he made me laugh. And for me, that’s all it took.

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Before we were even pregnant, Miles surprised me with this shirt for my birthday. I think my grin says it all!

It’s taken a bit longer than we expected, but Miles and I are finally back on track with the life we always imagined. This April, “the plunge” awaits us – as many of you know, we are expecting twin girls via gestational surrogate. I know we are in for a doozie. But, through all the sleepless nights ahead, the midnight feedings, and the new-parent blunders, I have no doubt that Miles will continue doing what he’s always done: he’ll be there, right by my side, for whatever comes our way. And, inevitably, probably even in the middle of an epic double diaper blow-out, he’ll make me laugh. These little girls have no idea how lucky they are – they’ve got the best daddy in the world.

I love you, Miles. So much. Happy Valentine’s Day, baby!
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I’m in PEOPLE Magazine, and the Rose Bowl Parade!

Wow – what an incredible thing to wake up to – we’re in PEOPLE Magazine!

Thank you to PEOPLE and to their reporter, Tiare Dunlap, for publishing such an extensive piece about our story. This will hopefully do much to raise awareness about lung cancer.  Please share to help us spread the word and to encourage follow-up stories!

CLICK HERE for full article and videos

ALSO – watch me tomorrow in the ROSE PARADE!  I’m incredibly honored to be riding City of Hope’s float.  I used to watch the Rose Parade every year with my family, and I cannot wait to fulfill this childhood dream!

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Sugar & Spice & Everything Nice

We recently headed up to the Santa Monica Mountains above our home to soak in the view, and open the envelope revealing our babies’ genders.

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We brought along the champagne Bonnie Addario sent us in New York nearly 3 years ago after my successful surgery. We had been saving it for a special occasion, and this was perfect!

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Sugar and spice and everything nice…that’s what our TWO little girls are made of!

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(In case it isn’t obvious, Miles decorated his gingerbread man…rest assured, I’ll be the one dressing the twins!)

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Celebrating the wonderful news!

Can’t wait to welcome these little girls into the world.  Twin due date: April 18th!

Much love. Live in the moment.

EmBen

Reaching new heights…I’m on a billboard!

Check out this CBS LA News piece that aired yesterday (click on the video below)! Honored and grateful that CBS is shedding a light on young lung cancer by highlighting me and my friend, Sandy Jauregui-Baza.  We are both hopeful that this piece will help increase awareness for all lung cancer patients.  Thank you to the Bonnie J. Addario Lung Cancer Foundation (ALCF) for sponsoring this billboard campaign!
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The ALCF’s billboard – I can’t believe we are up there!

 

The Patient Perspective

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This past week, I was given the honor to deliver the keynote address at the Opening Ceremonies of the World Conference on Lung Cancer from the International Association for the Study of Lung Cancer (IASLC) in Denver.  In front of about 3,000 oncologists, surgeons, radiation oncologists, researchers, patients and pharmaceutical representatives, I shared not only my story, but the patient perspective, focusing on the need for aggressive treatment and pushing the boundaries of the standard of care.

Below is a video of my speech – make sure to watch through to the surprise ending!

 

If you are under 40 and have lung cancer, PLEASE sign up for the ALCF’s study, Genomics of Young Lung Cancer. It is open to young patients form around the world.  More information HERE.

Much love, live in the moment.

EmBen