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.

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

Back on Healthline’s Best

Best_Lung_Cancer_Blogs_2014_1At the end of last year the EmBen Kicks Cancer blog was selected for a spot on the Healthline.com list of the Best Lung Cancer Blogs of 2013.  Healthline just came out with their best-of-the-year roster for 2014 and guess which blog is back on the list…..  EmBen Kicks Cancer!!!!

As the Healthline article relates, stories that emerge from the lung cancer community can be inspiring, heartbreaking, hopeful, and thought provoking.  Some of the blogs selected convey the raw emotions and day-to-day realities faced by lung cancer patients undergoing treatment, while others focus on encouraging news from researchers or calls to action from activists.  Regardless of their purpose, the blogs’ perspectives on life give everyone reason to appreciate today and be hopeful for what tomorrow may bring.

As followers of EmBen Kicks Cancer you are already familiar with Emily’s incredible journey.  Please take a moment to read about some of the other patients who are also courageously battling lung cancer head on and providing hope and inspiration to the lung cancer community.

Lung Day 2.0

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

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

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

Breakfast in Bed                      Lung Day Tasks

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

One Mile Walk          One Mile Walk with Dogs

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

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

Tour De France

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

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

Friends  Lung Day Intermission

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

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

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

Blowing Out The  Candles          Lung Day Toast

Lung Day Cake

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

One Year NEDiversary!!

Happy one year NEDiversary!!!  Unlike most celebrity marriages, Emily and NED are still going strong after one year…and word on the street is that Emily thinks NED might be the one for life..

This past Monday, February 10th, Emily had a CT scan and by early afternoon she received a call from City of Hope.  The news was positive – her scans were cancer free!  Emily took the news in stride, expecting nothing else.  Personally, I don’t think my innards will ever recover from the anxiety I am putting them through.

Later that night, we were able to have a quick celebration at Bru Haus, the same bar we had the Chemo Kick Off party at more than a year and a half ago.  It was an amazing opportunity to reflect on the journey to date.

I feel so grateful.  There is nothing like the peace of holding Emily at night after receiving positive scan results.  Thank you for all the prayers and thoughts.

Much love.  Live in the moment.

Miles & Emily

NEDiversary

Miles and Emily at City of Hope after receiving her latest, greatest CT scan results. If Miles’ shirt looks familiar that’s because you might have seen it in other City of Hope photos….he has worn it to EVERY appointment they have had there since Emily’s diagnosis 🙂

Hope on the Beach 1

Emily and Miles spent a few days in Cancun in January to rest and relax. They wrote these messages in the sand on a rainy day, and are so happy that a sea of NED is all they can see!

Emily, Voice of the Patient

Emily was called upon by Bonnie J. Addario of the Lung Cancer Foundation to present the patient perspective at the AACR – IASLC International Lung Cancer Conference. Emily told the story of her nationwide search for a curative treatment and of her fight and determination to survive.  At the end of her speech, she addressed the room – filled with the world’s leading lung cancer specialists and researchers – and called upon them to treat their patients individually and aggressively in their fight to survive.

Prior to Emily’s talk, as word spread through the lung cancer patient community that she would be a conference panelist, there was an exciting buzz.  Patients often feel unheard by their doctors, trapped by the standard of care, and are left feeling hopeless.  Emily’s speech gave patients a voice.

The audience’s response at the conference was overwhelmingly positive.  Researchers told Emily that she helped remind them of why they spend so many countless hours in the lab.  Oncologists were equally enthusiastic, and she hopes that her message struck a chord and influences future treatment patterns. Other participants requested that Emily speak at upcoming events, including the esteemed IASLC World Conference (where attendance is expected to be 9,000)!

Below is the video of Emily’s speech.  I urge you to take the time to watch it.  I am so proud of her as she has taken on this next challenge in lung cancer patient advocacy. After an exhaustive personal battle to survive, she is courageously and energetically taking on the universal war against lung cancer.  We will need our army with us for this new challenge, and we thank you in advance for your continued support.  Are you with us?

Much love. Live in the moment.

Miles (and Emily)

Healthline’s Best + 200K

Best_of_Blogs_Lung_Cancer_2013_1Healthline.com is a website dedicated to improving health through information.  It provides readers with various health content promoting healthy lifestyles, disease prevention, and other relevant information for people looking for answers to their health questions.  This past week Healthline.com published a list of the Nine Best Lung Cancer Blogs of 2013.  Guess which blog made the list…

EmBen Kicks Cancer!!!!

The blog was started a year and a half ago to provide information on Emily’s condition to relatives and friends to ease the communication burden on her immediate family.  As doctors formulated the best course of action, the blog was used to raise funds for fertility and cancer treatments.  However, as her journey progressed, the blog evolved.  Eighteen months later the blog has now been viewed in over 120 countries.  This past week EmBen Kicks Cancer surpassed the 200,000 view mark!!  We are thankful for all of the support, and so very happy to be able to extend help and hope to others battling this disease.

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 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

From the Pacific to The Atlantic: Emily is Big News

Emily was recently contacted by The Atlantic for an article about lung cancer.  Published today, and prominently featuring our favorite survivor, the article is titled “Why Do Healthy Non-Smokers Get Lung Cancer?”  It includes the research on why anyone with lungs is at risk for lung cancer, and what is being done about it.

You can read the article HERE.  Please help spread the news – forward, re-post, and tweet the story!

The Atlantic_Lungs