Making Dreams Come True

Cancer evokes paralyzing fear as it threatens your entire future.  Life milestones, once assumed inevitable, become unlikely possibilities.   More, your mere existence hinges on factors outside of your control.  The fear can be suffocating; and not just for the patients, but for all those around us.

AYA, ALCF, Bonnie, Corey, Sandy

Hanging out with Bonnie and some of the awesome patients she’s connected me with – Corey Wood and Sandy Jauregui-Baza.

Through my position at the Addario Lung Cancer Foundation (ALCF), I am in contact with new patients each week.   The most common question I have is not about side effects or treatments, but rather “How do you deal with the fear?”

Miles often tries to paint a picture that I am stoic under all circumstances.  Almost inhuman with my composure.  I’ll admit his unwavering confidence in my own confidence makes me stronger.  But he forgets that on the day of my diagnosis, it was me he found curled in a ball, sobbing in the shower.  Fear had crippled my legs.  And there, under the falling water, I lay completely vulnerable without any strength.  I was suddenly fighting for my life and I felt unprepared, weak, and frightened.

That night, Miles and I made a vow: Cancer would never steal one more moment from us.  We began to plan and talk about our future…a future without cancer.   Each night, we envisioned the same three scenarios:

One, we would give back and help other patients.  The care and support we were receiving from oncologists, surgeons, family friends, and the ALCF was extraordinary.  We wanted to ensure all patients had the same opportunities and advantages that I was receiving.  And today, thanks to Bonnie, I have been given the opportunity to fulfill this promise each day through my work with her foundation.

Two, we would join in celebration with our family and friends to thank them for their overwhelming support.  You all provided us with the greatest gift: love.  We felt it around us constantly.  It gave us such strength.  It inspired us with so much hope.  It bolstered our fight.   So, we started planning a party that we would throw when I was two years cancer-free to thank everyone who helped make me a survivor.

To be honest, in the summer of 2012, a celebration party felt like a very distant dream.  There was so much to get through in the meantime: chemotherapy, finding a surgeon, traveling to New York for treatment, enduring radiation, a long and difficult recovery, and finding a new “normal.”  Whenever things got tough, Miles would remind me of how incredible our 2 Year NED party was going to be.  Often at night as I struggled, he would start imagining the event.  And to make me smile, he kept making it more and more grandiose. No, this was not going to be a typical summer BBQ.  It was going to be a fancy affair…Lights illuminating the night sky…DJ spinning dance tunes…Caterers walking around offering appetizers with fancy names. He would survey the imaginary crowd of guests and tell me who was there.  It would make me giggle with excitement.  I wanted that day to be a reality so badly.

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Some of the gang celebrating out on the dance floor!

And on May 23rd, it became one.  Miles and I threw the 2-Year NED party of our dreams.  And let me tell you: IT WAS WORTH THE WAIT!

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My boyfriend, NED, even made an appearance. And boy was he popular (see pictures below)!

That night, we welcomed about 75 of our dear family and friends to our home to celebrate this momentous occasion. Just as we had imagined over the past three years, the party was spectacular.  We were surrounded by so many people that we could never truly thank in words.  We had family, friends from college, workmates, college coaches, and even Dr. Reckamp and Carrie Christansen, my care team from City of Hope.  And under the glow of about 5,000 white Christmas lights, we ate, drank, and danced the night away in honor of this life event.  In the end, as hard as cancer tried to take away my life milestones, all it did was create new ones to enjoy.

Three, we would spend each night dreaming about our future family….which may not be such a dream anymore…stay tuned for that in the next post! 🙂

Much love. Live in the moment.

Emily

NED party - NED

Happy Birthday Miles!

Today is Miles’ birthday and Emily has chosen to celebrate her husband’s big day by reaffirming her commitment to another true love.  Scandalous?  Nope!  That other true love is good old NED (who we have come to know and love thanks to Emily) and Miles could not be happier.

This birthday present is the result of Emily’s most recent appointment at City of Hope for routine follow up scans.  Emily underwent a brain MRI (done every six months) as well as an “eyes-to-thighs” PET/CT (done once a year).  The results of both scans: ALL CLEAR!!!

Emily, Miles, and friends gathered at Bru Haus (as has become the tradition) to toast two wonderful occasions.  Happy, happy birthday to you Miles – we look forward to celebrating many more birthdays with you and your cancer-free, NED-loving wife 🙂

Miles' 30th

Miles' 30th (2)

Em's Clear Scan

Back on Healthline’s Best

Best_Lung_Cancer_Blogs_2014_1At the end of last year the EmBen Kicks Cancer blog was selected for a spot on the Healthline.com list of the Best Lung Cancer Blogs of 2013.  Healthline just came out with their best-of-the-year roster for 2014 and guess which blog is back on the list…..  EmBen Kicks Cancer!!!!

As the Healthline article relates, stories that emerge from the lung cancer community can be inspiring, heartbreaking, hopeful, and thought provoking.  Some of the blogs selected convey the raw emotions and day-to-day realities faced by lung cancer patients undergoing treatment, while others focus on encouraging news from researchers or calls to action from activists.  Regardless of their purpose, the blogs’ perspectives on life give everyone reason to appreciate today and be hopeful for what tomorrow may bring.

As followers of EmBen Kicks Cancer you are already familiar with Emily’s incredible journey.  Please take a moment to read about some of the other patients who are also courageously battling lung cancer head on and providing hope and inspiration to the lung cancer community.

One Year NEDiversary!!

Happy one year NEDiversary!!!  Unlike most celebrity marriages, Emily and NED are still going strong after one year…and word on the street is that Emily thinks NED might be the one for life..

This past Monday, February 10th, Emily had a CT scan and by early afternoon she received a call from City of Hope.  The news was positive – her scans were cancer free!  Emily took the news in stride, expecting nothing else.  Personally, I don’t think my innards will ever recover from the anxiety I am putting them through.

Later that night, we were able to have a quick celebration at Bru Haus, the same bar we had the Chemo Kick Off party at more than a year and a half ago.  It was an amazing opportunity to reflect on the journey to date.

I feel so grateful.  There is nothing like the peace of holding Emily at night after receiving positive scan results.  Thank you for all the prayers and thoughts.

Much love.  Live in the moment.

Miles & Emily

NEDiversary

Miles and Emily at City of Hope after receiving her latest, greatest CT scan results. If Miles’ shirt looks familiar that’s because you might have seen it in other City of Hope photos….he has worn it to EVERY appointment they have had there since Emily’s diagnosis 🙂

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Emily and Miles spent a few days in Cancun in January to rest and relax. They wrote these messages in the sand on a rainy day, and are so happy that a sea of NED is all they can see!

Emily, Voice of the Patient

Emily was called upon by Bonnie J. Addario of the Lung Cancer Foundation to present the patient perspective at the AACR – IASLC International Lung Cancer Conference. Emily told the story of her nationwide search for a curative treatment and of her fight and determination to survive.  At the end of her speech, she addressed the room – filled with the world’s leading lung cancer specialists and researchers – and called upon them to treat their patients individually and aggressively in their fight to survive.

Prior to Emily’s talk, as word spread through the lung cancer patient community that she would be a conference panelist, there was an exciting buzz.  Patients often feel unheard by their doctors, trapped by the standard of care, and are left feeling hopeless.  Emily’s speech gave patients a voice.

The audience’s response at the conference was overwhelmingly positive.  Researchers told Emily that she helped remind them of why they spend so many countless hours in the lab.  Oncologists were equally enthusiastic, and she hopes that her message struck a chord and influences future treatment patterns. Other participants requested that Emily speak at upcoming events, including the esteemed IASLC World Conference (where attendance is expected to be 9,000)!

Below is the video of Emily’s speech.  I urge you to take the time to watch it.  I am so proud of her as she has taken on this next challenge in lung cancer patient advocacy. After an exhaustive personal battle to survive, she is courageously and energetically taking on the universal war against lung cancer.  We will need our army with us for this new challenge, and we thank you in advance for your continued support.  Are you with us?

Much love. Live in the moment.

Miles (and Emily)

Year In Review

What a difference a year can make!  Thank you to all of our family, friends, and supporters who have been a part of this journey. To those who come to this site in need of inspiration, this look back at 2013 is for you.  

Much love.  Live in the Moment.   

Emily & Miles

TREATMENT

January 2013

Six months post-diagnosis, Emily completed seven rounds of chemotherapy.  The triple-drug cocktail of Carboplatin, Alimta, and Avastin was toxic but effective, making Emily eligible for surgery.  Miles’ employer, The Garland Company, generously donated to help fund the Young Lung Study, and produced this heartfelt and uplifting video of Emily’s path to surgery.

February 2013

Emily and Miles temporarily relocated to New York City for an innovative, post-chemo treatment of Stage IV Adenocarcinoma at Mt. Sinai Hospital.  On February 8th, Emily successfully underwent an extra-pleural pneumonectomy, removing her entire right lung, pleura, seven nodes, half of her diaphragm, and the pericardial sac surrounding her heart. Two days post-op, Emily was caught dancing in the halls of the hospital.

Chief of Thoracic Surgery, Dr. Raja Flores, shared the great news with Emily – he saw no evidence of disease following her procedure.  She was NED!  Emily told Miles it was the happiest day of her life.

NED with Miles

Emily with Dr. Flores

March – April 2013

After three weeks of recovery, Emily embarked on the final stage of treatment: 28 rounds of high-dose radiation to the empty lung cavity.  It proved to be the most arduous part of the battle, but necessary to knock out any microscopic cancer cells and prevent recurrence.

Victory

MOVING FORWARD

September 2013

Six months and two NED scans later, Emily and Miles confidently moved forward in life with the purchase of their first home – a house with plenty of rooms and a large yard for a big family.

Driving to First House

Driving into the neighborhood on move-in day.

Miles carries Emily over the threshold, a dream come true.

Miles carries Emily over the threshold, a dream come true.

PAYING IT FORWARD

While Emily continued to work diligently at her recovery and continued health – sleep, physical therapy, aerobic and breathing exercises, and an array of integrative therapies – she also made an important, life-altering career shift to undertake an active role in lung cancer advocacy.

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Emily sought donations to produce and distribute the most comprehensive patient handbook ever published for newly diagnosed lung cancer patients (free download HERE)

First Television Appearance

Next up was a polished and poignant appearance on the nationally televised Steve Harvey Talk Show to promote the Bonnie J. Addario Lung Cancer Foundation, awareness of the disease, and to help put a new face on lung cancer and replace the current stigma.

Steve Harvey

First Interview in National Magazine

Emily was highlighted in this article published in The Atlantic in November, ““Why Do Healthy Non-Smokers Get Lung Cancer?”

Speech 1First Performance as a Couple

Emily and Miles took to the stage at the Lung Cancer Foundation’s annual Gala to promote a new study designed to identify a genetic link in lung cancer.  Their heartrending story raised hundreds of thousands of dollars for the cause.

The couple was also featured in this 2013 Gala video highlighting patient success stories.

LOOKING AHEAD

Emily will start the New Year off with a bang when she joins Bonnie Addario as a program participant at an International Conference, “Molecular Origins of Lung Cancer” in San Diego.  Stay tuned, and Happy New Year! 😀

Healthline’s Best + 200K

Best_of_Blogs_Lung_Cancer_2013_1Healthline.com is a website dedicated to improving health through information.  It provides readers with various health content promoting healthy lifestyles, disease prevention, and other relevant information for people looking for answers to their health questions.  This past week Healthline.com published a list of the Nine Best Lung Cancer Blogs of 2013.  Guess which blog made the list…

EmBen Kicks Cancer!!!!

The blog was started a year and a half ago to provide information on Emily’s condition to relatives and friends to ease the communication burden on her immediate family.  As doctors formulated the best course of action, the blog was used to raise funds for fertility and cancer treatments.  However, as her journey progressed, the blog evolved.  Eighteen months later the blog has now been viewed in over 120 countries.  This past week EmBen Kicks Cancer surpassed the 200,000 view mark!!  We are thankful for all of the support, and so very happy to be able to extend help and hope to others battling this disease.

Emily’s CT & Brain MRI Results Arrive Post Gala

The 2013 Bonnie J Addario Lung Cancer Foundation (BJALCF) Gala united over 40 lung cancer survivors with researchers, oncologists, surgeons, pharmaceutical execs, fundraisers, foundation workers, volunteers, and hundreds of steadfast and generous supporters in the cause to eradicate lung cancer.

Three distinguished and radiant survivors:  Emily “EmBen” Taylor, Bonnie J. Addario and Hank Baskett, Sr. at the San Francisco Fairmont Hotel Ballroom.

Three distinguished and radiant survivors: Emily “EmBen” Taylor, Bonnie J. Addario, and Hank Baskett, Sr. at the San Francisco Fairmont Hotel Ballroom.

Bonnie’s daughters are at the heart of the BJALCF – Danielle Hicks, Director of Patient Services and Programs (left), and Andrea Parks, Director of Event Strategy and Marketing (right).

Emily and Natalie DiMarco join in the applause as the Gala survivors are asked to stand. This year had more survivors than any of the previous seven Gala events, thanks in large part to the work of the BJALCF.

Speech 1 Miles

After awards were presented for Outstanding Service in the Field, and the BJALCF 2013 video was shown (watch HERE if you missed it!), two of the video’s participants were asked to take the stage. Miles told the audience about INHERIT, a new study funded by the BJALCF, carried out at the Dana Farber Institute at Harvard, that will seek to determine if the T790 gene in lung cancer can be inherited, like the BRCA gene in breast cancer.

Speech 2 Emily

Miles then passed to mic to Emily who shared her personal story and history. Her conclusion was a stunner, “I have nine frozen embryos, and if it’s possible that this gene is inherited, I want to know so that my children can be tested and treated early, so that they will not have to go through the hell that I have been through.”

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Bonnie’s husband, Tony, later commented “Every woman at my table was in tears.” The applause left them humbled, but the bigger reward was displayed on the donation screen to their left where audience members punched in donations of $217,300!!!

Josh & Fam

Josh Zazulia (Miles’ college roommate and Best Buddy in their wedding party), joins the family for the happiest of celebrations.

Photo bomb

Miles tries to shows his appreciation to Andrea for pulling off such a spectacular event . . . only to be photo bombed by his sister.

One Lung Dance

Emily continues to enjoy strapless dresses, proudly displaying her long surgical scar. Here she is teaching her family and supporters the One Lung Dance…it involves little foot movement, some dramatic arm flare, and a lot of attitude.

The Results

And now, the news you have all been waiting for: Miles Taylor presents the test results…

Live in the Momemt

EmBen is still NED,
CT scan and brain MRI are clean!
What can be said?
She’s a cancer fighting machine!

James

Visit the gallery of James Hall (center), our favorite photographer EVER, for more photos of the Gala.

Building An Army

We are proud to be part of this special video highlighting the new studies and support provided by the Bonnie J. Addario Lung Cancer Foundation.  Lung cancer is a global epidemic that needs a global solution.  We are building an army.  Please watch, share, and join us.

Much love,
Emily & Miles

P.S. Happy Birthday, Bonnie J. Addario!  You are our hero!

Second Annual BJALCF 5K

Last weekend over 50 of Emily’s most dedicated and spirited supporters descended on San Francisco for Team EmBen’s second annual appearance at the Bonnie J. Addario Lung Cancer Foundation (BJALCF) “Your Next Step is the Cure” 5K event.  It was beautiful and sunny out – simply a perfect day for thousands of folks to rally together in the fight against lung cancer.  Team EmBen raised almost $10K for the cause, and overall the event raised $320K.  A-M-A-Z-I-N-G!!!!  Here are a few photos highlighting the incredible day…

Team EmBen SF 5K

Team EmBen, fifty people strong, looking spry and spirited, as usual.

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Emily’s cousin Amy (left) coordinated a top secret operation that brought Emily’s brother, Chris, and other cousin Lindsay (right) in to San Francisco for the race from out of state. Emily was completely surprised and having her family take part in all of the festivities made the day even more memorable.

Nate and Sign Dominating

This is Nate, he is one of Emily’s biggest supporters and, for the second year in a row, he ran the ENTIRE race carrying the Team EmBen sign high overhead. Nate and his wife Melanie have a 3 month old baby, Parker, who happens to be Emily’s littlest BIG supporter.  He also completed the 5K in an “I Heart EmBen” onsie with a sign on his stroller. Like father, like son..

Emily, Bonnie, and Natalie

Emily with fellow lung cancer survivors and champions of the cause – Bonnie (middle) and Natalie (right)

Taylor Family

The Taylor family used their lungs to dominate the running portion of the event for the second year in a row.  EmTay won the women’s 39 and under division while Rich won the Grand Masters category. Meanwhile, Miles took home the award for most wrist/arm flare.

Lung Run Collage 1Lung Run Collage 2

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If you did not get to take part in the 5K in San Francisco you can still support this great event.  Click here to make a donation and join the rest of Team EmBen in the fight against lung cancer.

Finally, a great big thank you to James Hall, who captured many of these wonderful images from the day.  If you would like to see more photos, please visit his website here.