“I promise” – 7 Years NED

About a month before every scan, Miles starts to get nervous. “Scanxiety” they call it. The pacing begins; then the hypervigilance over every little cough (“What was that? You feel ok??”). Then the seemingly random and incessant question: “You promise?”

This question began shortly after we returned home from my lung removal and radiation treatment in New York in 2013. It was like a nervous tick, a talisman of Miles’ internal anxiety. He’d ask “You promise?” and I would know instantly he was worrying. It became our shorthand for all the things we couldn’t possibly put into words – “You promise?” was a way for him to ask me the impossible, to beg me to confirm what we could never truly be certain of: “You promise you’ll be ok?

7 years NED pic

I made this frame for Miles on my 2 year NEDiversary, using the paper he excitedly wrote on the day after surgery, when Dr. Flores first told me I was NED.

I’d respond “I promise” – usually, on good days, I’d see relief wash over his face. The closer we got to scan day, the question popped up more frequently, with more urgency; my response with less potency. But Miles needed to hear me say “I promise” just as much as I needed to say it – to feel like this was something I could control, something I could confirm. Yes, I promise. I promise I’ll be here in a year. In 10. In 20. I promise we will get the life we’ve been dreaming of, the life we’ve been begging and clawing and suffering for. I promise this scan will be good and we will be able to breathe again. I promise.

We’ve been lucky. Extremely and inexplicably lucky. We are keenly aware of this; just in the past month, the lung cancer community has lost several members we’d come to consider friends. People we’ve looked to for hope, people we’ve shared our fears with, people who wanted to survive just as desperately, and who suffered just as badly for it as I did. Yet no amount of wishing or praying or “I promise” could save them from this awful disease, and my heart is broken for their families and loved ones. My heart is broken for them, for all their un-lived hopes and dreams.

The injustice is shattering. And I’ll admit that the fear and sadness I feel at their passing causes me to catch my breath, to acknowledge the weight I feel in my chest when I think about what could have been for me.

It is with this in mind that I woke up today, on my 7 year NEDiversary. Remembering my own fight, but also burdened by the injustice my friends have faced in the loss of theirs.

I am unimaginably grateful for my outcome. Seven years ago, fresh off a lung removal and radiation that made me miserably sick for months, this life was a pipe dream. The reality Miles and I are now living is beyond our wildest dreams. It is what I was wishing and hoping for every time I would squeeze his hand, look into his eyes and will to be true – “I promise.”

In the uncertain world of lung cancer, unfortunately none of us can truly make this promise. We have no idea if the treatments will be effective, the scans will be clear, the outcomes will be good. But I need that phrase, and the confidence and hope that it inspires in both myself and Miles. We need to believe that, by making that promise, it is true. That I am NED. That I will always be NED. That 20, 30, 50 years is a reality.

I promise.

 

(We are sad to miss the SoCal 5k today supporting the Go2 Foundation for Lung Cancer – formerly Addario Lung Cancer Foundation and Lung Cancer Alliance – as Miles has the flu and we don’t want to risk infecting anyone. This is a foundation near and dear to my heart, and it is doing so much good for patients like me. Please consider donating HERE.)

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

Lung Day 2.0

Last February while in New York City just before the surgery to remove her lung, Emily was nervous about the effect it would have on her ability to do normal daily tasks.  To ease her mind, Miles came up with Lung Day.  Lung Day consisted of numerous challenges – dancing in Central Park, climbing a flight of stairs, and screaming “NED!” from atop of the Empire State Building. The idea was that each subsequent year they would have Lung Day so Emily could compare how she was doing, and be reminded of just how far she had come.

The original plan this year was to return to New York for a one-year follow up appointment with Dr. Flores and have Lung Day in the city; however, terrible winter weather on the East Coast put a halt to that.  Fortunately, Dr. Flores gave a glowing review of Emily’s latest scans and assured her that she needn’t make the trip all the way to NYC…but Miles wasn’t satisfied…

Last month, on the anniversary of her first Lung Day, Miles and EmTay surprised EmBen with breakfast in bed.  The startled yet excited EmBen was instructed to eat quickly as her first Lung Day challenge would start in 15 minutes.

Breakfast in Bed                      Lung Day Tasks

Challenge #1: One Mile Walk
Emily took a one mile stroll with the dogs around the neighborhood.  No breaks.  No rests.
Status: Complete

One Mile Walk          One Mile Walk with Dogs

Challenge #2: Blow Up Balloon
With one of Emily’s favorite new songs playing in the background, she expanded that one lung and blew up a balloon with surprising ease.  No dizziness.  No exhaustion.  She is now qualified to work the local circus.
Status: Complete

Challenge #3: Tour De France
Emily was given a yellow top and a bike helmet (aka Steelers football helmet). Channeling the Livestrong, cancer-beating Lance Armstrong, she rode the bike like a champion for 30 minutes.
Status: Complete

Tour De France

Challenge #4: Scream to the Heavens
After two exhausting workouts, Miles and EmTay did what any doctor would recommend – they sent Emily up a ladder.  Climbing onto the roof, Emily reached the ridge and screamed “I’m NED!”  This was a particular favorite for her as last year she would only scream “NED.” To be able to put a simple “I’m” in front of the word this time held much significance and was a source of pride and gratitude.
Status: Complete

Intermission: Some of Emily’s closest friends and supporters arrived at the house to partake in the second half of Lung Day and root Emily on as she continued to attack the challenges set forth.

Friends  Lung Day Intermission

Challenge #5: Lap Swim
Now that her full cheering squad had arrived, Emily was given the biggest challenge yet: swim one lap in the pool.  Under the guise of safety, Miles dressed Emily in ridiculous children’s swim gear he had purchased: arm floaties (unnecessary) as well as an inner tube (doubly unnecessary).  Fully outfitted, you would have thought Emily had had surgery to add rocks to her belly rather than having an organ removed.  Enjoy the laugh, and marvel at how far Emily has come!
Status: Complete

Challenge #6: Dance to the Music
Although her post-surgery dance moves typically involve a lot of arm flailing with minimal lower body action, Emily is not scared to bust a move.  As always, dancing brings the biggest smile to her face.
Status: Complete

Challenge #7:  Blow Out Candles
Surrounded by family and friends, Emily made a small speech about her happiness for all of the love surrounding her and Miles, and gratitude to be able to celebrate this day.  Then she exhaled like an angry Zeus and blew out every candle on the amazing Lung Day cake that Webmaster Annie had made.
Status: Complete

Blowing Out The  Candles          Lung Day Toast

Lung Day Cake

It was a wonderful, joyous day of celebration!  And most importantly, Emily successfully completed Lung Day after only one year post surgery.  She has rendered moot all of those concerns and worries of living a normal life.

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 🙂

Hope on the Beach 1

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!

Open Letter to Dr. Oz

The Dr. Oz Show is a daytime talk show hosted by surgeon Mehmet Oz where a variety of different health-related topics are discussed.  On November 29th an episode aired regarding four symptoms that people frequently worry about.  One of the top symptoms was a persistent cough, and Dr Oz assured his young female guest that because she had never smoked he did not think she should worry about having lung cancer.  Does this story ring any bells?  Raise any red flags??  A persistent, dry cough was Emily’s ONLY external symptom of lung cancer.

Emily has written Dr Oz in hopes that he will correct this misinformation that was shared with millions of viewers.  She is just one voice though.  Can you spare one minute to contact Dr Oz and the show’s producers?  We want to request that they dedicate a show to the very real and developing epidemic of lung cancer among young, non-smoking adults.  Do you know someone who works at the Dr Oz show, or perhaps the friend of a friend?  Please make sure that this letter from Emily gets to their inbox!

*************************************************************************

Emily & Miles Taylor

Dear Dr. Oz –

My name is Emily Bennett Taylor and at age 28 I was diagnosed with Stage IV non-smokers lung cancer.  Bonnie J. Addario of the Bonnie J. Addario Lung Cancer Foundation mentioned me in a letter to you in December, regarding your segment on Friday, November 29th titled “The Alarmist Guide To The Symptoms You Worry About Most.”

The only symptom I had was a nagging, persistent, dry cough.

If I had watched your show a year and a half ago, before my diagnosis, I would probably be dead.

VballIn June 2012 I was 28 years old and about to celebrate my 2nd wedding anniversary with my husband. We met in college where we were both athletes, and continued to lead a healthy, active lifestyle together after graduation.  I have never smoked a cigarette in my life.  So you can imagine my surprise when I got a chest x-ray for a persistent cough that I thought must be allergies, and my pulmonologist immediately ordered a CT scan after seeing the results.  And then a biopsy.  And then told me I had advanced lung cancer.

I went through eight rounds of chemotherapy, and was lucky enough (and I do mean lucky) to have surgery become an option.  But it wasn’t easy – on February 8th, 2013, my entire right lung was removed in an Extrapleural Pneumonectomy procedure.  A month later, I began 28 rounds of high-dose radiation to my entire right lung cavity.  I battled radiation nausea and fatigue for months, could barely walk, and now go to physical therapy to try to regain the strength that withered away during those months. Today, eleven months after surgery, I am extremely grateful – and again, lucky – to be considered NED (No Evidence of Disease), but not one single day has been easy.5k12w-3301

So you see, Dr. Oz, my life and my struggle are evidence that the face of lung cancer is not what society thinks it is.  We need to raise public awareness.  Sadly, lung cancer is essentially a death sentence at a mere 15% survival rate; a large reason for this is the lack of early detection due to misconceptions about who is at risk.  Misconceptions that were, unfortunately, propagated by your show.

The fact is that lung cancer is the #1 cancer killer in America.  It kills more than breast, colon, and prostate cancers combined.  Yet, due to the stigma, it is the ignored cancer and is drastically under-funded and consequently under-researched.  More and more non-smokers like me are being diagnosed, and we need to know why and how to treat these people.

BJALCF13-6742

For most new diagnoses, as I’ve learned the hard way, it has nothing to do with cigarette smoking. That is why the Bonnie J. Addario Lung Cancer Foundation is working to find a genetic marker in lung cancer, much like the BRAC gene for breast cancer.  Personally, my new dedication in life is to raise lung cancer awareness and funds so that we can find a genetic component and attack the root cause of lung cancer.

As a doctor, I know your main objective is to help people and save lives. That is why I would love the opportunity to help you correct the dangerous misinformation that was provided in your November 29th show.  Together we can save a life like mine.  I’ve included my website so that you can read up on my story; it was just voted into the “Top 9 Lung Cancer Blogs of 2013” on Healthline.com.  I have been able to connect with and help so many fellow patients, but I would love to continue that work through your show.

Much love.  Live in the moment.

Emily “EmBen” Taylor
embenkickscancer.wordpress.com

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.

First SpeechFirst Speech

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! 😀

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.”

Speech 3

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.

A Spook-tacular Halloween

Ned and Dr Flores

“NED” Flanders and Dr. Raja Flores

Miles and Emily recently moved into their first house in a neighborhood known locally as “Candy Cane Lane”.  It’s an LA destination for Christmas decorations, and the streets attract thousands of visitors around the holidays.  In other words, a neighborhood right up their alley!  Their new neighbors alerted them that they should expect big crowds on Halloween as well so Emily made sure the house was well-stocked with candy.

In celebration of Emily’s NED status (No Evidence of Disease), she dressed as Ned Flanders and Miles dressed as her surgeon, Dr. Raja Flores.  Friends Nate, Melanie, and baby Parker, and Annie and John came over to join in the Halloween festivities (and, unbeknownst at the time, to assist with crowd control).

Sushi and Chef

Sushi Chef Melanie and her favorite sushi creation, Parker

Emily made a game of counting trick-or-treaters, but gave up around 425.  Miles and Nate, meanwhile, had their own game going on with the costumed kiddies.  Each trick-or-treater who came to the house got a piece of candy; however, if they were willing to shoot a basketball on Miles’ new hoop, each kid could earn five extra pieces of candy for a made basket.  Jackpot!!

Mel, Em, and Annie

Melanie, Emily, and Annie distributing candy to the masses

As you can imagine, the line down their driveway was soon over a hundred trick-or-treaters deep.  Oh, and if the kid [teenager] was 16 or older, they got one piece of candy for a bucket.  If they missed, they got a “Go get a job!” from Nate.  Needless to say, the candy ran out long before the massive crowds of trick-or-treaters subsided.  Emily has already made a note to buy more next year..

It was a wonderful first holiday in their new home, and Emily and Miles are looking forward to many more.  Hope you all had a spook-tacular Halloween!

Halloween Crowds

Every superhero, princess, and monster wanted a chance to shoot a basket and score extra candy!

NED is Here to Stay

I [Miles] am all about monogamy, but EmBen can have as much NED as she wants.

The past three months have been focused on recovery from surgery and radiation.  Each day, EmBen has challenged herself physically and mentally to increase her lung capacity and overall energy level.  The improvement has been noticeable and remarkable, and with that comes such promise of long-term health.

But yesterday (Monday 8/19) we had a CT scan.  The date has haunted me all month.  It is a reminder that her health is hardly safe.  So, despite my confidence in EmBen, and despite her incredible determination and focus, I have been crippled by fear the past week.  It is a common reaction and known as “scanxiety” in the cancer community.  For me it entails not sleeping, not eating, an inability to work (sorry Garland!), and a general all round physical meltdown.  For EmBen, it simply means enjoying another day of life (sometimes I wonder if she is still human).

So after anxiously waiting the past 24 hours, we just received word that EmBen continues to be cancer free!!!!!!!!!!!!!!!  Her love affair with NED is showing promise of a long term relationship.  The worrying can subside for now and I can accompany EmBen in enjoying each marvelous day.  She is the most beautiful, amazing woman and I keep falling more and more in love with her.

Much love.  Live in the moment.

Miles (and EmBen)

Cheers to NED!

Miles and Emily sure do love having NED around – Cheers!!!

Cheers to 6! Cheers to 100!

Exactly six months ago, Emily underwent an extrapleural pneumonectomy at the Mt Sinai Hospital in New York.  After the procedure, Emily’s thoracic surgeon, Dr Raja Flores, shared the incredible news that she had no evidence of disease.  They had successfully removed all evidence of lung cancer from her body.  Emily had achieved the elusive goal of NED!

Exactly 100 posts ago, this blog was launched.  It was meant to keep Emily’s close friends and family updated on her treatment and progress, but evolved into much more than that.  Friends shared it with their friends who shared it with their friends who shared it with their friends.  The blog made its way to other lung cancer patients and their caregivers.  Lung cancer is a grim diagnosis but Emily’s story is one of hope, love, and survival.  As of today, the blog has had 175,000 views from 121 different countries around the globe.  Many, many heartfelt thanks to everyone who has supported Emily along the way and helped share her story with the world.  You have not only helped Emily in her own journey to beat lung cancer, but are helping inspire other patients to achieve same.

Cheers to Emily for six months NED, and many more milestones to come!  And stay tuned – they will all be chronicled right here 🙂