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

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.

Ho Ho HOakdale

Last December after her 6th round of chemotherapy, Emily and Miles hosted “Deck the Halls of Brentwood”, a wildly successful holiday party at their apartment in Brentwood.  Now that they own a home on Oakdale Ave in a neighborhood known as Candy Cane Lane, it was only fitting that Emily and Miles host “Ho Ho HOakdale” and try to outdo their own holiday spirit from one year ago.

Emily tapped back into her holiday Pinterest board and prepared an incredible spread of festive foods that could make even the most gluttonous elf feel full all the way to the tip of his pointy little ears…

HohohOakdale Food

Miles took the lead on entertainment and made sure that between the music, the games, and the photo booth with props, there was never a dull moment.  All attendees were required to wear their most festive holiday sweater or costume.  Side note – if you want to know what constitutes top notch holiday costume please see Nate Folk, aka The Grinch.  He was a regular celebrity on Oakdale Ave as the cars that were driving around to look at the holiday lights would stop and entire families would pour out to take photos with him.

HohohOakdale Friends

Party goers also braved the bumper to bumper traffic that was inching around the neighborhood (seriously, it looked eerily similar to the 405 freeway at 5PM..) and went for a late night stroll on foot to check out the holiday displays.  Needless to say, the houses on Candy Cane Lane did not disappoint.  It was almost possible to hear the electricity meters humming in overdrive as millions of colorful lights twinkled, snow flurries flew in larger than life inflatable snow globes, and robotic reindeer pulled Santa around.

HohohOakdale Decorations

Overall it was a fun and festive night to celebrate good friends and good health this holiday season.  If you are in the neighborhood, or flying overhead, keep an eye out for Miles’ and Emily’s house – you will be able to identify it by this special light display on the roof…

Holiday Hope

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.

Attention San Francisco Bay Area EmBen Supporters

Marissa Bus Stop

Marissa is pumped to pour cocktails – come visit and test her mixology skills!

This Thursday, September 26th, Emily and Miles’ college friends Marissa and Josh will be hosting a fundraising event from 6 – 9 PM for Team EmBen at Soda Popinski’s (1548 California St, San Francisco, CA 94109).

Josh Lung run

Josh would LOVE to make you a drink – won’t you stop by and make his night?!

Stop by, say hello, and grab a drink or two!!  Marissa and Josh will be bartending and ALL tips from this three hour window will go towards Team EmBen.  Raffle tickets will also be sold for some awesome prizes, and all proceeds go to Team EmBen for this Sunday’s race.

Speaking of, if you still haven’t signed up or donated for the 5K, please CLICK HERE to do so now!  

Steve Harvey…and One Cup of $5 Tea

Emily made her national television debut on the Steve Harvey Show on Thursday.  She was beautiful, poised, and eloquent as she shared her story and thanked her personal hero and mentor, Bonnie Addario.  If you missed the live show, you can watch Emily and Bonnie’s segment HERE.

EmHam and EmTay at Steve HarveyDuring the Steve Harvey taping, Emily had two familiar faces cheering her on in the audience – her sister in law, Emily Taylor (EmTay), and EmTay’s best friend from college, Emily Hampson (EmHam).  (Note: Miles also managed to sneak in despite not meeting the prerequisite of being named Emily)  EmHam has been a huge supporter of EmBen – she sends regular care packages and will be making the trek from her hometown of Chicago to San Francisco for the Lung Run on September 29th.  EmHam has her own blog and this week she made this poignant post to help raise funds and drive awareness.

One Cup of $5 Tea

Next Wednesday, Sept 25th, I will turn 33.  There was never any question in my mind that I might not reach this age.  That I wouldn’t be married, settled in the suburbs with a toddler hanging off my hip, scrubbing crusted spaghetti sauce off the inside of the microwave.  I am certain I have managed to take for granted most of my 12,000 plus days here on Earth and I have done so with the careless comfort of believing that death was something you fumbled upon in your 80’s and even 90’s.  I have had other vital matters to attend to.  Like fretting over the zit that perennially forms in the crease of my chin and those flights that were delayed over two hours due to tornadoes in the Oklahoma Panhandle and the nor’easter in Maine, and my beloved houndstooth sweater that shrunk in the dryer, not once but twice.  I have been aimlessly distracted, attempting to recall ridiculously devised computer passwords, hunting down parking spots, burning frozen pizzas in the oven, and making sure my daughter didn’t rip the pages out of all the Dr. Seuss books.  For the past 33 years, I have had that pleasure.  This past year, however, everything was jarred.  Shaken up and stirred. 

I found out a year ago this past July that my best friend from college’s sister-in-law had been diagnosed with Stage 4 Lung Cancer at 28.  She was a star volleyball player in college, a newlywed, a gorgeous and avid athlete, and a person who had never once touched a cigarette.  Her name is also Emily.  And I guarantee you she would have given anything that summer to worry about marinara in her microwave. 

Emily’s good friends started a blog last year help keep those who cared for her informed throughout her journey.  She endured multiple rounds of chemo out in Los Angeles, which led to a complete lung removal surgery in New York this February, followed by 28 unrelenting radiation treatments.  With her family, a buttress of steel behind her, Emily has battled, fought, persevered, and maintained her lovely sense of humor and gracious spirit with gargantuan grit and guts.  She is officially NED (No Evidence of Disease) as of this spring, and is gaining her strength and stamina back little by little with the support of streaming Netflix, electrolyte water, daily walks with her pooch, and her loving and devoted husband, Miles.  Likely not in that order.

A few weeks ago I had the pleasure of being a guest in the audience when Emily made her television debut at a taping of the Steve Harvey show here in Chicago. The producers had flown her in from the West Coast so that she could surprise and thank her mentor and hero, Bonnie Addario, Founder and President of the Bonnie Addario Lung Cancer Foundation, who has raised over $10 million for research, medical support, and awareness to eradicate this devastating disease.  There was Steve Harvey’s perfectly-positioned couch.  And there was this breathtakingly beautiful girl with long brown hair and a poppy red dress, poised and postured with her ankles crossed under the glare of the studio cameras.   The gasps in the audience were audible when it was revealed that she was in fact the face of lung cancer.  This bright young woman, oozing with the promise of a giant life yet to live, sitting there, confiding her brutal battle to simply survive. 

I was shocked at how neglected lung cancer funding is when I did some digging online.  It is the most lethal cancer, and yet it receives the least amount of funding from the National Cancer Institute.   It garners a fraction of the dollars that go to breast cancer, for example, and yet is second only to heart disease in cause of death.    There seems to be a stigma associated with lung cancer as a smoker’s condition that is self-inflicted.  However, more and more young non-smokers and especially women are contracting it.  All the while funding is desperately needed to aid these patients and educate the public on belying the myths of lung cancer.  Even the ribbon signifying the disease was formerly clear, giving subtle reference to its invisibility and lack of deserved attention.  It has since evolved to white and I will be proudly wearing that ribbon next week when I run in the Your Next Step is the Cure 5K in San Francisco with Team EmBen.  Did I say run?  Okay, jog… well, powerwalk for sure.  I will cross that finish line though, despite being embarrassingly out of shape and floppy in various key places. 

Which leads me to my 33rd birthday.  I’m not in the habit of buying lavish birthday gifts for my compadres, but who doesn’t love splurging on a draft pint or classy cosmo for a friend, toasting to their companionship and to another year of warding off grey hair?  Pretend I am that friend this week….. that you are treating me to a steaming cup of earl grey (decaf for those who really know me) and a long overdue chat, and instead toss some change to the Bonnie Addario fundraising site in honor of EmBen.   I even put the website here to make it easy for you: CLICK HERE TO DONATE!!!

And remember to set your DVRs this Thursday, September 19th to watch a poignant story of survival and support unfold on the Steve Harvey Show (NBC).  Never mind that it comes after a teen sexting segment, I promise you will be moved.  I promise you will turn off the television and not care that you forgot to buy the orange juice at the supermarket.  And I hope you may just feel inspired enough to “take me out” for a $5 tea… 

                                                                                           

There is still time to donate or register to join EmBen, EmHam, and EmTay at the Lung Run in San Francisco as they walk/powerwalk/run to end lung cancer.  All of the details can be found HERE.  Thanks for your support, hopefully we’ll see you next weekend!!!

https://vimeopro.com/lungcancerfoundation/news/video/75054783

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 🙂

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.