Keeping Up with EmBen

Emily on KardashiansEmily made a surprise cameo appearance in this week’s episode of Keeping Up with the Kardashians.  In the episode titled “Move It or Lose It”, Emily radiantly displays her lung cancer wrist bands at a celebrity golf tournament benefiting the Bonnie J. Addario Lung Cancer Foundation.

For other videos of Emily, check out the EmBenKicksCancer You Tube channel HERE.

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.

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

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!

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

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!!!

Team EmBen Wants YOU!!

Join Team EmBen

Mark your calendars for Sunday, September 29th – Team EmBen is coming back in full force and looking for new members for this year’s Bonnie J. Addario Lung Cancer Foundation (BJALCF) “Your Next Step is the Cure” 5K event!!  Last year the team raised $10K and 70+ friends and family descended on San Francisco with nothing less than 732.5% team spirit.  The team is reuniting behind its namesake and inspirational leader, and looking to up its game this year.

Do you want in?  Yes?  Yes!  Great answer.  Here is the scoop:

Who:
You!

What:
“Your Next Step is the Cure” 5K Run/Walk

When:
Sunday, September 29th, 11 AM

Where:
Lake Merced, 1 Harding Road, San Francisco, or wherever you may be located around the world [You do not have to be in San Francisco to be a part of Team EmBen!]

Why:
To raise money and awareness for lung cancer research and education, to share stories and support with other lung cancer patients, survivors, and their families and communities, and because it’s fun, just plain old fun.

Next StepsCLICK HERE TO JOIN TEAM EMBEN!!  If you are able to make it to the 5K in San Francisco, please click on the link at the upper right side of the page that says “Join Our Team” to register for the event as a runner/walker for Team EmBen.  If you are unable to make it to San Francisco but would still like to be a part of the team and lend your support from afar, please click on the button on the right side of the page that says “Give Now”.  Your contribution will be counted towards the Team EmBen fundraising total.

Emily has been working hard on rebuilding her strength and lung capacity so she will be able to complete the entire 5K with the rest of the team.  She is excited to visit with everyone from last year, and looking forward to seeing lots of new faces in the crowd as well.  Won’t you come to Lake Merced on September 29th and help make her day? 🙂

In other awesome news, these have been popping up around San Francisco (!!!):

EmBen Bus Stop                      Marissa at EmBen Bus Stop

This advertising campaign was recently launched to help promote the 5K event as well as some of the other great initiatives that the BJALCF spearheads to support lung cancer patients and their families.  Who better to be the inspirational face of a lung cancer survivor than dear Emily?  Keep an eye out for her cute mug gracing bus stops around The Bay!  If you spot one, take a photo with it and share the pic with the rest of Team EmBen using #EmBenKicksCancer!

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

Rest & Recovery

After nearly three months in New York which included major surgery and a daily battle with nausea (radiation side effect) for six straight weeks, Emily was thrilled to board a plane and return home.  However, returning to Los Angeles did not mark the end of recovery.  Rather, as we have learned over the past month, it’s going to be a long road.

Doctors told Emily she would experience fatigue as her body recovered from radiation, but nothing could actually prepare her for the extreme exhaustion.  For the first few weeks home, simple activities like walking from the living room to the kitchen or even moving from one couch cushion to another resulted in five minutes of catching her breath.  Although frustration had a few appearances, Emily managed to remain optimistic and set her sights on recuperation.

Even though she still has a way to go, Emily is starting to regain her energy.  She has provided her body with ample rest – 13 hours of sleep at night is the norm, and while awake she often spends a majority of her time on the couch following through on DVD and TV show recommendations.  She is increasing her lung capacity and activity levels by walking Ginny daily.  Needless to say, Ginny is the most excited of all that they have made it up to four blocks now.  We are encouraged that these effects are radiation related, and not due to the removal of her lung.  She was walking two to three miles at a time in the period between surgery and radiation, so we are confident she’ll be able to get back to that point and beyond.

Celebrating Recovery

A nice night out to celebrate NED and continued recovery progress.

Many of you have asked about the current treatment plan.  At the moment, no traditional treatments are being administered.  Once Emily became NED via surgery and radiation, it was determined that maintenance chemotherapy would not be needed.  We have researched many supplements that have benefits for lung cancer patients (benefits to NK cells, immune system, etc.), so we’ve been playing around with which ones Emily can tolerate, and she is now up to about 20 pills a day.

Although the past month has not been incredibly easy, Emily can state without a doubt that it is all worth it.  This past Tuesday, she had her first CT scan since before her surgery.  The results came back clear.  She is cancer free and NED.   Upon hearing the news, I ran around the house whooping and screaming in celebration.  However, Emily simply remained lying on the couch with a big smile and finally said, “That’s great to hear.  I knew it.”  She may be still regaining her strength physically, but mentally there is no one stronger than Emily.

Next Up:  The next CT scan will be in three months.

Much love.  Live in the moment.

Miles & Emily