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!
Emmy

3 Years…NED!

Today marks a special day.  Three years ago my loving husband, Miles, chased after Dr. Flores in the ICU to ask him if my surgery had made me “NED – No Evidence of Disease.”  I held my breath – trust me, not easy with one lung – as Dr. Flores walked back into the room, and I cried tears of joy when he confirmed that yes, I was NED, and he could no longer see any cancer inside of me.  You may remember that I called this “the best day of my life.”

Em, Miles, and NED

It’s true – up until then, that WAS the best day of my life. Hands down.  Now, though (warning, I’m about to get a little philosophical here) every single day after that is my new best day.  That surgery paved the way for every day to be better than the last, because it gave me a chance to live the life that was nearly taken away.

I love this anniversary.  It reminds me of where Miles and I have been, and how lucky we are to be where we are now.  It provides us with a concrete measuring point to look back on that first year mark, and then on the amazing developments that were made possible by turning two years NED.

COH speechYesterday, exactly 3 years after my surgery date, I had an incredible opportunity to reflect on the past three years, as I shared my patient story at the City of Hope Leadership Update summit.  City of Hope is so near and dear to my heart, and I’m infinitely grateful for the chance to publicly thank Dr. Karen Reckamp, RN Carrie Christiansen, and the entire City of Hope team.

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And finally, just because I can’t resist…the latest picture of our beautiful Angela!  She’s doing such a great job growing these little zucchinis! Can’t believe we’ll already be at 27 weeks tomorrow!

Much love. Live in the moment.

EmBen

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!

 

BIG Baby News (like really REALLY big)!

Last April, after learning I was two-years cancer free but unable to carry a child, I posted on this blog to ask if anyone would consider being our surrogate. It was a bold move, and it was hard not to consider that I might be left without a response, and quite embarrassed. Within hours, however, volunteers started responding with heartfelt enthusiasm. Over the next few weeks, more than a dozen of you offered the most unbelievable sacrifice. Still today, we are in awe and overwhelmed with gratitude.

And the surrogate is . . .

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Angela and Aaron, with their adorable boys, Austin, Aiden, and Alexander.

Half a lifetime ago, as a high school junior, I won the Idaho State Track Championship. My coaches, Angela and Aaron Stark, were a young, enthusiastic
couple with whom I remained friends well after graduation. They now live in Kentucky, where they are parents to three darling boys; and as luck would have it, both are readers of the blog. When Angela made the decision to help me become a mother, her enthusiasm was irresistible. In true coach fashion, her email subject line read: “Let’s do this!” And so we did!

Angela is Awesome…and fertile 🙂

Miles and I hit the jackpot with Angela: she is pure love. She has made the cross-country trip to LA multiple times, undergone extensive testing, pumped herself with hormones, and was eager to start anew when the first attempt was unsuccessful.

Angela somehow continues to juggle a new job, parenting, running marathons, and chairing fundraisers, while going out of her way to keep me connected with all she is experiencing. We text, we call, we message, we email. Angela and Aaron were even in our kitchen via FaceTime when we learned the news she was pregnant.

Just a few weeks ago, Miles and I were in Kentucky with them for the first ultrasound where we saw . . .drumroll, please . . . THE TWINS!

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Every Wednesday, Angela sends us a Baby Bump picture update. Last week, the twins were as big as peaches…

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…and at 14 weeks, they are now our little Lemons 🙂

 

 

It takes a village…

They say it takes a village to raise a child. In our case, it took a village to create one. . . actually, two!

When I was diagnosed with advanced lung cancer in June 2012, news spread rapidly among family and friends. We were incredibly touched by the outpouring of love and support we received. We welcomed meals and doggie care, but felt a fair amount of guilt accepting the checks people were sending.

However, within weeks, the financial impact of a cancer diagnosis became downright scary. We soon learned that care that goes “above and beyond” most often also goes beyond insurance coverage. An initial test for genetic mutations at $7,000 was the eye opener. Clinical trials – often the only place to get access to cutting edge new treatments – seemed likely in my future. Many of these, like immunotherapy, could only be found abroad at that time. Furthermore, Miles and I were determined to preserve our fertility, and were soon embarking on the significant cost of this endeavor.

Today, my medical treatments have exceeded more than $1,000,000. We are fortunate that a vast majority of this has been covered by health insurance, and thanks to your support and donations, Miles and I have been able to fund our fertility treatments.

Thank you from the bottom of our hearts. Your donations allowed us to preserve the 9 embryos that provided me with hope when I needed it most. They gave me the strength to fight through difficult treatments. And today, as two of those embryos are growing, you are giving us the family we have always dreamed of.

Miles and I are overjoyed to share this incredible news with all of you. Thank you for your support, your contributions, and your love. We wouldn’t be here without you. Team EmBen rocks!

Living in the Moment,

Emily & Miles

Spreading the word – Puerto Rico welcomes us!

This past weekend, as a spokesperson for the Addario Lung Cancer Foundation (ALCF), Miles and I traveled to Puerto Rico, where I spoke before the 5TH Annual Puerto Rico Fall Cancer Symposium.

Puerto Rico presentation

Dr. Edgardo Santos, from ALCF Center of Excellence Boca Raton Regional Hospital, moderated the Q&A following my speech.

I was standing in for my fellow stage IV young-lung friend, Sandy Jauregui Baza. Sandy, fluent in Spanish, was scheduled to speak but had to bow out as the potential for blood clots from air travel is exacerbated by her cancer drugs. I did my best to make her proud, intertwining English with a little Spanish as I shared my story in an attempt to educate general oncologists and docs to look beyond age, gender and smoking history when treating their patients. Lung Cancer is the number one cancer killer of both men and women of all ages. All physicians need to be alert to its symptoms, aggressive in ordering both tests and referrals, and advise their young patients on fertility preservation.

I’m so grateful my message and speech were well received, and there was a lively Q&A afterward. I met some wonderful doctors, researchers and nurses, and hopefully changed their perspective on who can get lung cancer. And then we got to enjoy this….

Puerto Rico beach

 

Thank you, Oprah!

Many thanks to Oprah and the O Magazine staff for helping raise awareness of the growing prevalence of lung cancer among young never-smokers like myself, both through their informative article in last month’s issue and my follow-up letter in their November 2015 publication.

See a copy of my letter below. Thanks, Oprah!Oprah Combined

 

 

 

 

 

 

 

 

 

 

Breath of Life

At age 28, I was diagnosed with stage IV lung cancer. I was a former college athlete and had never smoked. Three years later – after chemotherapy, surgery to remove my entire right lung, and months of debilitating radiation – I am working as a spokesperson and patient advocate for the Bonnie J. Addario Lung Cancer Foundation (ALCF) and participating in the Genomics of Young Lung Cancer study, mentioned in Aimee Swartz’s article “The (Non-) Smoker’s Disease.”

Because of this study, and the amazing care I received through the ALCF, I am starting to think about life after cancer (including the possibility of a baby!). Thank you so much for bringing this story to the attention of your readers. There are thousands of young, healthy, athletic women like myself out there facing a diagnosis like mine. They so desperately need to know that this isn’t their fault, and they aren’t alone.

Emily Bennett Taylor

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