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

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.

A Thankful Turkey Day

Thanksgiving DinnerThanksgiving has always been one of Emily’s favorite holidays.  Admittedly, in the past, this was because she loved the food so much.  But this year it was particularly special as it provided an opportunity to relax, spend quality time with family, and be truly grateful for her health.

This same time last year, just a few days before Thanksgiving, Emily was supposed to receive her 5th round of chemotherapy.  While she was hoping to feel well enough for turkey and all the fixin’s, she also worried that the chemotherapy side effects would forever associate the taste of Thanksgiving food with nausea (which has unfortunately been the case with numerous foods).  However, any negative connection was averted when her treatment was delayed due to low platelet counts.  While you may assume that Emily did a jig at the opportunity to now gorge on stuffing and mashed potatoes (well, okay, there was a little jig), the fact that she would go a whole extra week without treatment was nerve-wracking and altogether unwelcome.

The GuysFor the first holiday since her diagnosis, cancer was not the focal point, and Thanksgiving 2013 was about laughter and celebration.  Making it even more special, Emily’s family – Shelley, Kevin, and Chris – flew to Los Angeles to spend the holiday in Emily and Miles’ new home.  The whole family relished the opportunity to breathe easy over Emily’s newfound strength and health, and to be together for copious amount of movies and board games (Chris is quite the Uno player, beware!).

Preparations

As for the meal, Shelley and Emily cooked a marvelous feast, which led to Emily collapsing into her bed by early afternoon for a much-needed siesta.  Meanwhile, the Bennett men intended on spending Thanksgiving lounging on the couch watching football, but once Miles enthusiastically educated them on the rich history of their new neighborhood “Candy Cane Lane”, and the responsibility of each homeowner to decorate in excess of Clark Griswold, they sprung into action.  Soon, lights were dripping off the gutters, wood cutouts of Frosty and Christmas trees lined the yard, and life-size Santa Clause blow-ups were dancing on the rooftop.  Although the electricity bill may now rival the mortgage payment, it’s pretty cool to be able to see your house from space, right? 🙂

Decorating

While it may have seemed like just another holiday visit with family, to Miles and Emily this Thanksgiving was so much more.  It was a reminder to cherish those things that are truly valuable – family, friends, and health.  Emily and Miles are grateful for your incredible support and love over the past year and a half.  You’ve help get them to this point, and for that, they are so very, very thankful.

Happy Holidays

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!

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

Lung Run Collage 3

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.

Full Circle – Our Dream House!

Last summer, Miles and Emily were actively searching for a home.  In fact, as you may know, the week before she was diagnosed they had made an offer on a place.  Today, Emily and Miles are celebrating NED by coming full circle and moving into their new home in Woodland Hills, CA! It has everything they’ve dreamed about — most importantly, space for their future family.

house

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 🙂

Hitting the Links with BJALCF

BJALCF Golf TourneyEmily and Miles had the honor of attending the Bonnie J. Addario Lung Cancer Foundation’s (BJALCF) 8th Annual Golf Tournament on June 10th.  The beautiful weather in Millbrae, CA made for perfect conditions on the course, and Miles couldn’t have been happier.  He formed a team with his dad, Rich, his uncle, Stan Taylor, and high school friend, Brett Baker.  All of the guys gave an excellent effort, and while they may not have come in first place, they certainly had a lot of fun trying.  Emily spent the afternoon relaxing on the clubhouse patio with Bonnie and met many fellow survivors and friends of the Lung Cancer Foundation.

Emily and Hank SrAfter all golfers were in for the day, the group attended the banquet and silent auction.  The BJALCF had many generous patrons that graciously donated to the cause, and the event was a great success.  Emily even got pulled up by Bonnie to share her story – and exited the stage to a standing ovation.

Emily loved seeing the BJALCF “family” and swapping stories with other survivors only bolstered her ever-growing strength.  Miles and Emily are eternally grateful to Bonnie and everyone at the BJALCF for their endless kindness and tireless work to end lung cancer.  They are already making plans to return next year for the 9th Annual tournament!

Michele, Bonnie, and Emily

Papaya Leaf Tea

There are many food, herbal, and medicinal supplements thought to be effective in improving the body’s immune system, curbing the growth of cancer, and negating the side effects of chemo and radiation.  Emily had been taking L-glutamine, for example, based on a number of studies demonstrating its effectiveness in reducing the ghastly esophagus pain associated with radiation, and it was a godsend.

While in New York, Emily and Miles visited with an expert in Integrative and Complimentary medicine (differing from Alternative Medicine in that it is used in conjunction with, not in lieu of, traditional cancer treatments). They were able to discuss the efficacy of supplements that had been recommended to them and learn about others.

Since Emily’s diagnosis, many people have suggested supplements used to treat lung cancer in their native lands.  One such generous man is Hien Nguyen, who works with Miles’ father, Rich.  Hien mentioned to Rich that the Vietnamese drink papaya leaf tea to treat lung cancer, and that he personally has two friends with lung cancer who have consumed the tea for more than 10 years and attribute their survival in part to the tea.  Hien said if Emily was receptive to the Asian remedy, he would find a way to deliver it.

Emily, a tea lover anyway, said she would definitely give it a try.  This is the path that keeps Emily supplied with a steady delivery of papaya leaf tea:

Nha Trang

Hien contacts his friend Hai Tho Phan in Houston, Texas. Hai communicates with his relatives in Vietnam who own papaya trees. This lovely woman in Nha Trang (who dressed especially for this U.S. blog photo) picks the leaves from this papaya tree for Emily.

The Herb

This is the shipment as it makes its way through customs (and has yet to be confiscated).

Hien and Rich

Hien delivers it to Rich at SBA in Sacramento.

Rich to Emily

Rich takes it and brews up the tea for Emily, who drinks several flavorful cups every day.