New Decade, New Role, New Study

Most people dread their 30th birthday.  It represents an end to the youth, adventure, and possibilities of their 20s, and thrusts them into a new chapter of adulthood, maturity, and responsibility.  Yet as I [Emily] recently turned 30 years old, I felt nothing but joy and gratitude.  When you’re faced with a Stage IV cancer diagnosis and your own mortality at age 28, each following birthday is simply icing on the proverbial (30th birthday) cake.

Emily Turns 30

Turning 30? Nothing but smiles!

I have so much to be grateful for in reaching this milestone birthday: an oncologist and surgeon who were willing to help me fight for a cure, a team of family and friends and doctors who rallied around me, and a seductive affair with NED for more than a year now.

As I celebrate being 30, I cannot help but think of all the others battling this disease.  Throughout this process, I have met countless other young lung cancer patients.  Like me, they all check the boxes of someone you’d never think was at risk– young, healthy, athletic, non-smokers.   And yet here we all are with a potentially terminal disease before the age of 40.  Unfortunately, we are not anomalies, but rather represent an alarming trend.  Oncologists and researchers are bewildered by this group of diagnoses.  What is the root cause?  Is it genetic?  Is it due to radon?  Estrogen / testosterone?  Pollution?  Birth Control? Pesticides?

Perhaps I am simply acting 30, but I feel a sense of responsibility toward this group.  I want to find answers.  Not only to reduce my own risk of lung cancer recurrence, but to prevent the next 20-something from being stripped of his or her own youth, adventure, and possibility too soon.

This is why I’m going to participate in the upcoming Genomics of Young Lung study with the ALCMI (Addario Lung Cancer Medical Institute).  They will be collecting tissue and blood samples from patients diagnosed under age 40 in order to study them and provide new insight into lung cancer biology.  The hope is that we may find common, genome-defined subtypes of lung cancer that may be inherited, and thus develop targeted treatments for individuals carrying these subtypes.

It's official!I am passionate about this ground-breaking study which will focus on young lung cancer, and I am beyond proud to announce that I have officially joined the Bonnie J. Addario Lung Cancer Foundation team as the Spokesperson for this Genomics of Young Lung study.  I am so grateful for this opportunity from Bonnie, and will try valiantly to follow her superb example of what it is to be an ass-kicking lung cancer advocate.  So please prepare yourself for more posts and videos of me sharing my story at various lung cancer conferences around the world, and helping to raise awareness for BJALCF’s incredible efforts in the lung cancer field!

Much Love.  Live in the Moment.
Emily

Info on the Genomics of Young Lung Study: The Genomics of Young Lung (GYL) study is a revolutionary investigation into lung cancer. The GYL study looks to unlock two critical pieces of information: 1) how to properly treat young lung cancer patients and 2) how to determine who is genetically at risk in order to provide early screenings. Most importantly, the GYL study will move the lung cancer community another step closer to ensuring that other patients like Emily continue to reach the significant milestones in life.

To donate to the Genomics of Young Lung Study, click [HERE].  

If you were diagnosed under the age of 40 and would like more information on participating in Genomics of Young Lung, please email info@lungcancerfoundation.org.

Brian Kissinger, diagnosed Stage IV at age 33.  Currently on targeted treatment and doing well.

Brian Kissinger, diagnosed Stage IV at age 33. Currently on targeted treatment and doing well.

Eliabeth Hicks has two small children, and was diagnosed at age 28, Stage IIIa.  Like Emily, her treatment included surgery (lobectomy), radiation, and chemotherapy.

Elizabeth Hicks has two small children, and was diagnosed at age 28, Stage IIIa. Like Emily, her treatment included surgery (lobectomy), radiation, and chemotherapy.

Erik Hall was diagnosed at age 30 and his treatment course was much like Emily's, including surgery (lobectomy), radiation and chemotherapy.

Erik Hale was diagnosed at age 30 and his treatment course was much like Emily’s, including surgery (lobectomy), radiation, and chemotherapy.

Jill Costello - the namesake of Bonnie's sister foundation, Jill's Legacy - was only 21 years old and the rowing captain at Berkeley when she was diagnosed. Sadly, Jill lost her life at the age of 22, but her legacy to "Beat lung cancer - BIG TIME" lives on.

Jill Costello – the namesake of Bonnie’s sister foundation, Jill’s Legacy – was only 21 years old and the rowing captain at Berkeley when she was diagnosed. Sadly, Jill lost her life at the age of 22, but her legacy to “Beat lung cancer – BIG TIME” lives on.

Mark Costello (no relation to Jill) was diagnosed Stage IV at age 33. He has undergone chemotherapy and targeted treatment, and here he is with his family on vacation just 4 months after his thoracotomy surgery.

Mark Costello (no relation to Jill) was diagnosed Stage IV at age 33. He has undergone chemotherapy and targeted treatment, and here he is with his family on vacation just 4 months after his thoracotomy surgery.

Tori Tomalia was raising 3 young kids when diagnosed at age 37 with Stage IV. She is on targeted treatment and doing well.

 

Emily’s lung cancer “twin” Natalie DiMarco was given a similar diagnosis to EmBen’s when she was 32, just days after her daughter’s 1st birthday. She and her family are big BJALCF supporters, like here at the annual 5k in San Francisco.

Taylor Bell Duck was diagnosed Stage I at the age of 21. She underwent surgery and has been NED for 6 years now.

Taylor Bell Duck was diagnosed Stage I at the age of 21. She underwent surgery and has been NED for 6 years now.

Emily’s AWESOME Great Lung Run Video

Those of you that have been following Emily’s story should also be familiar with Kelcey Harrison and the Great Lung Run.  Kelcey’s 3,500 mile cross country journey is nearing the finish line as she is currently (finally!) making her way up the Golden State to the Bay Area.  The Great Lung Run will officially come to an end on Saturday, December 1st as Kelcey runs into Crissy Field in San Francisco.

While Emily is battling lung cancer at City of Hope, she would like all of her friends and family to support Kelcey as she pounds the pavement to fight lung cancer on this last leg of her journey through central California.  Emily has created an awesome video to show you just how serious she is.  Have you ever seen those Old Spice commercials on TV?  Well it’s sort of like that, only 734,298 times better.

Click here to make a donation to Kelcey and the Great Lung Run!

Simply the Best

Last weekend, Emily and I [Miles] drove to San Francisco to attend the 7th Annual Simply the Best Gala.  Each year, the Bonnie J. Addario Lung Cancer Foundation puts on this amazing, black-tie event to raise funds for lung cancer research.  Bonnie was generous enough to invite Emily and me as guests and to waive the $500 per person tickets (yeah, this party is legit).

Held in the renowned Fairmont Hotel Ballroom, the décor was astonishing.  Massive chandeliers hung from the ceiling.  Dinner tables draped in fancy linens beckoned with ornate centerpieces.  A local choir performed center stage to greet arriving guests.  It felt like we were crashing a royal party.  Oh, and did I mention the open bar?

The event was spectacular.  Unbelievable items – diamond earrings, paintings, Costa Rica trips – were auctioned off with all proceeds going to lung cancer research (by the way, how cool are actual auctioneers?).  At one point, Emily was called up on stage to draw the winning raffle ticket . . . and, I must say, she pulls off a helluva Vanna White impersonation.  Near the end of the festivities, Bonnie called for guests to “help make a difference” by donating to beat this awful disease.  Although lung cancer had never directly impacted most of them, in less than ten minutes, they had contributed more than $80,000.  It was exhilarating to know that while we fight in the present, there may be a cure in the future due to their generosity.

I cannot stress enough how uplifting the night was for Emily.  She met and spoke with so many survivors.  She learned new alternative therapies from Natalie DiMarco, who is currently undergoing radiation on the final remaining tumor in her lung, after defeating numerous other tumors and removing all cancer from her pleural lining.  Bill Kipp, who knocked cancer out of his diaphragm and is currently shrinking the tumor in his lung, shared his story and inspired Emily in her own fight.  Emily shared supplement recommendations with Brian Kissinger, an effusive three-year survivor and young father who has been stable for the past several years.  Jackie Archer, a seven-year survivor, held Emily’s hand and told her, “You will beat this.”

The event inspired and fueled Emily.  She radiated life on the walk back to our hotel room, and we celebrated with a jig down the hallway.  I don’t think either of us really knew why we were so happy.  Later that night, as she slept, I realized . . .

Sometimes the hardest part about cancer is not its toll on the patient’s body, but rather on the mind.  It can be mentally crippling.  The concept of defeating cancer can be daunting and overwhelming.  Emily has a remarkable ability to simplify the fight to a more mentally digestible day-to-day battle.  Each night before she goes to bed, she emphatically tells me, “I beat cancer today, and I will beat it tomorrow.”  Recently, as the chemotherapy side effects have increased, she has gained motivation to fight back by refusing to let cancer strip one single moment of her life.  Yet, despite Emily’s incredible willpower, and her constant proclamation that she is her own statistic, the challenge of beating lung cancer can seem like a never-ending uphill climb in the dark.  The Gala, and our encounters with actual survivors, provided a light of hope that illuminated the top of that climb.  We may have a way to go, but there is an end in sight.  We no longer just have hope.  We have a new-found confidence.

Thank you to Bonnie and her organization.  We are ever so grateful.

Love to all.  Live in the moment,

Miles and Emily

Dig Deep, Beat Cancer

Last Saturday night, volleyball fans, former players, friends, and family came from near and far to celebrate Emily.  The festivities started at 5:30 in the sauna that is more commonly known as Ducey Gymnasium (seriously, in the history of the gym’s existence the temperature has never dropped below 93 degrees).  There were delicious homemade desserts for sale along with awesome “Fight Like a Girl” wristbands and t-shirts.  Not only did most of the crowd end up sporting one these shirts in Emily’s honor, but so did the entire Cal Lu volleyball team.  The CMS Athenas also wore special warm-ups emblazoned with “EmBen #11” on the back.

The Athenas put up a strong effort but the nationally ranked Cal Lu Regals came away victorious.  Some of the crowd even got in on the volleyball action by participating in a half time serving competition.  There was no single champion from the serving competition, but when 20+ people are serving at the same time with balls flying everywhere and only one person gets hit in the head (that I saw), that is a victory in itself.

All in all, the night was a huge success raising $4,000 to help cover Emily’s medical expenses.  The Cal Lu community was so kind and generous as they rallied to support one of CMS’ own.  Ten women who played with Emily during her time at CMS returned for the evening to sit in the stands with her and cheer on the new generation of Athenas.  Countless other friends made the trek to Claremont from all across Northern and Southern California as well.  The fun isn’t over yet, though.  This weekend there are six more Dig Deep, Beat Cancer volleyball matches being played throughout the SCIAC conference to raise awareness about lung cancer and Emily’s fight.

Thanks so much to everyone who came out last weekend with bright smiles and big spirit.  The night would not have been as memorable without you.  There are a few folks that deserve special recognition for being extra awesome, however.  A super BIG thank you goes out to:

  • John Brankse & Buddy’s All-Stars, Inc. for donating the Fight Like a Girl t-shirts
  • Wright Design for donating the EmBen #11 warm up shirts
  • Kelli Smith for making all of the delicious desserts
  • Heather Semelmacher and Kyra Ray for handling the sales of all those t-shirts and bracelets
  • Darby Anderson & Jill’s Legacy for supporting and promoting the event from afar and sending all of the great swag to help raise awareness for Emily, Jill, and everyone battling lung cancer
  • Michael Preston for his exceptional emceeing of the entire night
  • Emily Scalmanini and Erin Graves for running their little own table where people could color or write message to Emily
  • Mike Haas for his ongoing support and generosity towards all things related to Athena Volleyball
  • Kellie Roesel for being willing to switch her own team’s schedule around to accommodate this event and jumping on board to support Emily 110%
  • Kurt Vlasich for rallying the SCIAC teams to Emily’s cause and working so hard on the logistics and all of the little details to make the night so great
  • Diana Graves for first envisioning this event to support and honor Emily so many months ago, and working tirelessly to bring it to fruition.  Also, for being such a dedicated friend and coach to so many lucky Athenas over the years 🙂

BJALCF 5K Top 10 List

This past weekend Team EmBen descended on San Francisco for the Bonnie J. Addario Lung Cancer Foundation (BJALCF) “Your Next Step is the Cure” 5K event.  There were so many incredible moments that it is hard to hard to formulate a description that does this fun / inspiring / uplifting / motivational / spirited event justice.  I’ve enlisted the help of ‘Best Buddy’ Josh Zazulia though and together we’ve formulated a Top 10 list..

#10 – Team EmBen and Their Fundraising Efforts for the BJALCF: In the week leading up to the event, Team EmBen swelled from 32 members up to 71 members on race day, each person dressed to the nines in hot pink and green.  This included a large contingency of friends and family from Southern California who made the trek up to San Francisco.  Altogether, Team EmBen raised almost $10,000 for the BJALCF, money that will go directly towards developing more effective treatments and finding a cure for lung cancer.  Fundraising MVP goes to Stephanie Hammond who brought in $1,600 in donations.  Also, a great big thank you goes out to Emily’s mom, Shelley, who couldn’t be at the race in person, but made sure that the entire group had spirited ‘Team EmBen’ arm bands to wear.

#9 – Taylor Family, Champion Runners: Much has been said about Miles and Emily’s athletic abilities to date, but let’s not forget about the rest of Team Taylor.  Miles’ sister, Emily (EmTay), was the 3rd fastest female runner in the entire event.  Yes, you read that correctly, not just the third fastest in her age group, but out of ALL the ladies.  Mom (Michele) and Dad (Rich) Taylor also had exceptional race performances on Sunday.  Michele took 3rd in the ‘Master’ category for ladies that are just a smidge over 40 years young, and Rich took 1st in the ‘Grand Master’ category for men that are just a smidge over 60 years young.

#8 – The Human Tunnel:  While the first person who originally envisioned (and enacted) the human tunnel is unknown, he/she was clearly brilliant.  The human tunnel saw a lot of action during our college years – what better way to exit the basketball/volleyball court after a great game attended by throngs of cheering fans?  Well the BJALCF 5K course was equally as deserving of this awesome formation.  A few short tunnels spontaneously appeared along the route in front of runners who may have been in need of a little extra pick me up.  The best tunnel by far came together at the finish line though just as Emily was rounding the final corner.  Emily was grinning ear to ear as she ran under dozens of outreached hands going crazy and cheering as if she had just won the New York Marathon.

#7 – Team EmBen Flag Bearer:  Nate Folk finished the race in 34 minutes, a very respectable time for a Browns fan.  There’s more to the story though – Nate carried the “Team EmBen” sign while running the ENTIRE 3.1 miles.  Despite gusty winds and sweaty hands, Nate crossed the finish line proudly holding the sign up high.  Nate’s wife, Melanie, also ran the entire race carrying the bag of extra Team EmBen wrist bands in the event that someone should need an extra piece of flare mid-route. No one should ever doubt the Folk’s commitment to Team EmBen. Ever.

#6 – Pre-race Meet Up:  In true Emily/Miles form, the pre-race get together for Team EmBen was a sports bar near the Golden Gate Park that had ~137 TVs broadcasting every single Sunday NFL football game.  While it was weird not seeing Miles and Emily in their usual Sunday Steelers attire, they were perhaps even cuter (and less polarizing) in their matching “Team Taylor” tee shirts.  While Emily and Miles played it safe and opted for a healthier lunch option, many of their fellow teammates enjoyed some greasy bar food and Indian cuisine for pre-race fuel.  Unfortunately, one of these friends wound up parting with his lunch mid race…4 times over.  He still finished in the top 15 though.  No pain, no gain.

#5 – Putting Awesome Names and Faces Together:  Over the past weeks and months Bonnie, Danielle, and the BJALCF team, Darby Anderson and the Jill’s Legacy team, and Kelcey Harrison of the Great Lung Run and Jill’s Legacy have provided Emily with invaluable support and information on how to navigate the unknown waters that lie ahead.  Most of the communication and interaction has been virtual thus far though.  Sunday was an opportunity to connect in person and put a warm body together with a name. Everyone was just as friendly, vibrant, and compelling in person as they had been over phone/email.  Kelcey is still in the midst of the Great Lung Run (she just reached the halfway point and is heading across Kansas) but we were so lucky to meet her sweet and wonderful mom, Gretchen, instead.

#4 – Spirit of Hope Award:  Prior to the start of the race, Bonnie J Addario, lung cancer survivor and founder of the BJALCF, welcomed the hundreds of participants gathered in Golden Gate Park.  During her address, Bonnie recognized fellow lung cancer survivors, Brian Kissinger and our very own Emily (!!!), with the Spirit of Hope Award.  This award is named for Jill Costello who passed away from lung cancer in 2010 and is given to someone that embodies Jill’s spirit of generosity, motivation, and the ability to inspire those around her.  Jill was an incredibly strong, passionate, and inspiring young woman and the foundation thought Emily deserved to be recognized for having those same qualities.  Emily accepted the award with grace and humility and there wasn’t a dry eye in the park.

#3 – Spirit of Hope Trophy:  Part of Emily’s recognition for the Spirit of Hope Award was a beautiful engraved trophy.  Emily accepted the momento from Bonnie and that was the last time anyone else got to touch the award.  Emily carried that sucker through the entire 3.1 mile course despite multiple offers from friends and family to hold it while she ran.  She even persevered through a pesky forearm cramp to carry it across the finish line.  The award may or may not have spent last night resting under Emily’s pillow…

#2 – Miles’ Love for Emily:  Miles has been a pillar of strength for Emily through this challenge that life has thrown their way.  He used to crumble at the mere thought of a needle, but no longer.  He has been the rock by her side during chemotherapy infusions, and late night bouts of nausea, during fertility treatments, and meetings with surgeons.  Yesterday, Emily got choked up while accepting her award for being so inspirational, and Miles’ eyes welled up with tears as she walked on stage to receive the award.  Emily was so clearly touched by all of the love and support.  Miles was so clearly infatuated with the strength and beauty of his wife.

#1 – Coming Together for an Incredible Cause:  Sunday’s event brought all kinds of people together, united by a common bond – to raise awareness and ultimately find a cure for lung cancer.  It was a beautiful day made up of love, hope, support, and determination to MAKE IT HAPPEN.  You can’t really ask for much more than that 🙂

For more photos please check the website of the official event photographer James Hall.  He is posting the photos in small batches and everything should be available by Saturday or Sunday.

In Her Own Words

Earlier today, the Bonnie J Addario Lung Cancer Foundation shared Emily’s journey with all of its local followers in the Bay Area.  Below is the letter that went out via email – Emily’s story, told in her own words.  Enjoy..

Three short months ago, I was leading a happy and healthy life as your average all-American girl.  I grew up in Northern Idaho before leaving my small town roots to attend college in Southern California.  My athletic abilities and competitive nature earned me a spot on the college volleyball team.  While in school, Miles Taylor, a player on the men’s basketball squad, caught my eye, and he’s been by my side ever since.

We married on the 4th of July, found jobs, rented an apartment, adopted a dog, hosted weekly game nights for friends, planned camping trips in the summer, and stayed healthy and active playing recreational volleyball (me), basketball (Miles), and co-ed softball (together).  From the beginning, Miles and I were in sync that we wanted a big family and soon began looking for our dream house for the future little ones.  In June of this year, we found the perfect place and prepared to make an offer.

That is when the all-American fairytale took an unexpected turn.  The very same week, I went to the doctor for a pain behind my shoulder blade and a persistent cough that I thought was the result of allergies.  I was diagnosed with asthma, and given an inhaler, but something in my gut told me to ask for a chest x-ray.  Four days later, after a CT scan and biopsy, I was diagnosed with Stage IV lung cancer. I was in shock – I am 28 years old, active, and have never smoked.

I jumped on treatment as quickly as possible, but my first concern was to preserve my fertility for the family Miles and I had been so eagerly awaiting.  I started fertility treatments immediately, and 10 days later we were lucky enough to freeze nine viable embryos for our future family.

Since my diagnosis, family, friends, colleagues, and teammates have rallied to blanket me and Miles in love and support.  They bring meals and water, wash our cars and bathe the dog, clean the apartment, and contribute to an engaging website, created by my friend and former teammate Annie Daun.  Miles and I are steadfast in our belief that we will someday have the family of our dreams, and that with your support, together we will all beat lung cancer, big time.

No one should have to go through lung cancer.  Not me, not Bonnie, not Jill or Gabby, not the countless other people who have been affected by this disease. But in my opinion, everyone who has been diagnosed should be so lucky to have the amazing resources available at BJALCF and Jill’s Legacy.  I have been incredibly fortunate to have their support, along with the care of my amazing doctors at City of Hope, UCSF, UC Davis, and Mt. Sinai.

Please join me for a 5K on September 16th in Golden Gate Park as I team up with the Bonnie J. Addario Lung Cancer Foundation to kick cancer.  CLICK HERE to join Team EmBen or make a donation to the cause

Thank you for supporting the cause and finding a CURE.

Much love.  Live in the moment.

Emily “EmBen” Taylor

Pounding Pavement, Pounding Cancer

Kelcey Harrison is dedicating Wednesday, September 5th as EmBen Kicks Cancer Day in the Great Lung Run!!  Now who is Kelcey Harrison you might ask, and what is the Great Lung Run?  To do the explanation justice we have to go back to June of 2009 where the story starts with an incredible young woman named Jill.

Jill Costello was a vibrant 21 year old college student, non-smoker, and coxswain for UC Berkeley’s NCAA Championship rowing team.  In June of 2009, she was diagnosed with Stage IV lung cancer.  Jill quickly rose to the challenge and set out to raise both money and awareness for this #1 most deadly form of cancer.  While Jill fought a tenacious battle against lung cancer, she passed away in June 2010.  Even though Jill was not able to beat lung cancer for herself, her spirit and commitment to the cause lives on in an organization aptly named Jill’s Legacy.

Jill’s Legacy was started by a group of young professionals including many of Jill’s close friends and family.  This is an entirely volunteer run organization dedicated to mobilizing young people to erase the stigma of lung cancer and raise funds for research.

Kelcey Harrison is one of these highly mobilized young people, and also a dear childhood friend of Jill’s.  On June 30th, 2012 she set out on a run from Time Square in New York City; Kelcey’s final destination – San Francisco!  This is the Great Lung Run.  Kelcey is running 30+ miles a day across the entire United States to raise money and awareness and to ultimately to “beat lung cancer, big time”, as Jill always said.

Bonnie Addario and Jill Costello

Jill’s Legacy is also a sub-entity of the Bonnie J. Addario Lung Cancer Foundation (BJALCF).  The BJALCF has been involved and incredibly helpful in Emily’s cause and word of her fight made its way to Kelcey.  As a result, Kelcey is dedicating Wednesday, September 5th of the Great Lung Run to Emily kicking cancer.  This is also the day that Emily has her third chemotherapy treatment.  While Emily is pounding cancer at City of Hope, Kelcey will be pounding the pavement to help her kick cancer.

For more information on the Great Lung Run, check out Kelcey’s website.  Or even better, get involved and help support Kelcey on the Great Lung Run!  You can either host her as she runs through your town, or “sponsor” her for a night by booking a hotel room along route so she has a warm place to stay and rest up.  Click here to check out the list of cities and towns that Kelcey is running through.  Do it for Kelcey.  Do it for Jill.  Do it for Emily.

For more information on the organization Jill’s Legacy, check out the Jill’s Legacy website.

To read more about Jill Costello’s incredible life and her courageous fight against lung cancer, check out this Sports Illustrated article.