Getting My Butt in Gear

Sometimes, I lack the motivation to work out.  I assume (hope?) this is a common issue for others, but if not I’ll just pull the one-lung excuse ;)

Sure, I feel a lot stronger these days.  And yes, I attribute that to my regular workouts, which are expanding my left lung capacity.  But every once in awhile I just want to regress by about a year and spend an entire day binge-watching a new TV series.  You know, the good ole’ days, when radiation side-effects had me so exhausted I could barely walk to the bathroom, and literally lay on the couch…for months.

But today, I was given a wake-up call.  A reminder that no, the past few years weren’t just a bad dream, and yes, I am determined to do everything in my power to prevent this awful disease from ever returning.

EmBen walking 3.5mi

Here’s today’s walking stats – San Fran 5k, here I come!

That wake-up call came via this very new study, not even out in print yet. To summarize, “Daily cardiovascular exercise appears to mitigate the growth of lung adenocarcinoma tumors.”   If “adenocarcinoma” sounds familiar, that may be because it’s the exact type of lung cancer I had.

So does this research apply to me? Yes.  Are these results exciting? Double yes.  Are they motivating me to get my butt in gear and go out for another training walk for the San Francisco 5k with ALCF? Hell yes.

If this study motivated you, too, click HERE to join Team EmBen and come join us on September 21st for your daily cancer-fighting exercise! Or hey, if you just want to fund life-saving research that’ll someday allow me to pop an anti-cancer pill so I can stop this silly workout fad and get back to curling up on the couch, we’ll take donations, too ;)

Much love. Live in the moment.

EmBen

One Step Further

18 months.  1.5 years.  One step further from cancer.

Last night we received the results of my 1.5 year post-op scan, and I am ALL CLEAR. That’s right – 3 more cancer-free months have passed since the last scan, and we expect nothing but NED in our future.

8.6.14 scan results

Miles and I took a walk last night to celebrate – and brought along some to-go adult beverages for a “cheers”!

In fact, Dr. Reckamp now wants to push my next few scans to every 4 months, and then, once I pass the 2-year mark, to every 6 months thereafter.  The idea behind this is to lower my long-term radiation exposure, because, well…we can now start thinking about the long term.

This all comes as an incredible relief.  While Miles and I have been busy enjoying life these past few months (traveling to visit family and friends, giving interviews to increase lung cancer awareness, celebrating birthdays, attending friends’ weddings), my health is never far from our minds.  I still need about 10 hours of sleep a night, I’m still incredibly susceptible to getting a cold, and I’m still working to increase my endurance with the hope of expanding my lung capacity. But these are daily battles we fight in order to keep on winning the greater war.  This latest scan is welcome confirmation that we continue to move in the right direction.  And we couldn’t be happier.

IMG_2468 - Copy

Yes, I am a dork. But, thankfully, my amazing sister, EmTay, is still willing to train with me so that I can proudly cross the 5k finish line!

Speaking of moving in the right direction:  I’m working my way up to 3.1 miles so that I can speed-walk at this year’s Your Next Step is the Cure (YNSITC) 5k in San Francisco on September 21st. Your participation will help eradicate lung cancer, and Team EmBen needs YOU!  Don’t let a one-lunger out-do you – bring your two healthy lungs out to join me in this race!

CLICK HERE to register for Team EmBen and select “Join Our Team” in the right hand column.  It’s only 1.5 months away, and I would absolutely love to see you all there!

If you can’t come to SF but still want to donate to support Team EmBen and the cause, please CLICK HERE. Thank you!

 

Much love. Live in the moment.

EmBen

 

#beatlungcancer

EmBen on KABC 7 News!

Big shout-out to KABC 7 News in Los Angeles for getting the word out on lung cancer! They interviewed me, Bonnie J. Addario, and Dr. Barbara Gitlitz, one of the lead researchers on the Genomics of Young Lung Cancer Study, while we were in Huntington Beach, CA for the PER International Lung Cancer Congress.

I think the piece turned out great – please watch HERE, and if you agree, post a comment below the video on KABC 7’s website to say how much you appreciate the coverage on lung cancer, and to ask for MORE!

EmBen KABC 7 interview 8.1.14

EmBen being interviewed by Denise Dador, of KABC 7 News Los Angeles.

 

Saving Young Lives

She asked me to sit down.  I could tell something was not right by the sympathy exuding from her eyes.  “We received your CT Scans…you have a tumor in your right lung, and it appears to be cancer.”

The word “cancer” punched me in the stomach.  I could barely catch my breath.  Fear raced through me.  I started to cry.   My mind panicked.  How will I tell Miles?  My family?  Will I get to have children?  I am only 28 years old…am I going to die?

One in 14 Americans will be diagnosed with lung cancer in their lifetime.  More than 228,000 people will be diagnosed with the disease in 2014.  Lung cancer is the number one cancer killer, and the second overall cause of death in the US (behind only heart disease).  This disease is a serial killer.  It threatens all…no matter what your age, gender, race, or location.  Yet somehow it is able to kill in relative anonymity and without punishment.  It is not plastered on the news.  Funds for lung cancer research lag far behind other causes and sadly its victims are often ignored or even blamed.

For years Bonnie J Addario and her foundation, the Bonnie J. Addario Lung Cancer Foundation (ALCF), have been giving a voice and a plan of action to lung cancer patients.  The ALCF now is ready to take another step toward putting an end to this disease.  The ALCF is funding the Genomics of Young Lung Cancer (GoYLC) study to stop an alarming trend in lung cancer: young lung cancer.

Young lung cancer diagnoses are unfortunately on the rise.  Each time I walked into a meeting with an oncologist or surgeon following my diagnosis, I was told they were starting to see more and more young patients like myself.  Therefore, it was not surprising to learn that this year the number of patients diagnosed under the age of 40 will increase to nearly 7,000.  These patients will be mostly healthy, athletic, never-smokers – hardly the demographic to be considered at risk for a life threatening disease.  ALCF is not willing to accept the diagnosis of these patients as simply unlucky.  For the first time ever, this group will be studied with a systematic approach to learn why more and more young lives are being cut far too short.

The study is happening during a thrilling time in lung cancer research.  For nearly four decades, lung cancer survival rates have been stagnant around 15%.  In the past decade though, research into the genetic markers of lung cancer tumors has led to enormous breakthroughs.  Genetic mutations like EGFR, ALK, ROS-1 and their respective targeted drugs have been discovered.  Advanced stage patients who have tested positive for these mutations no longer have to undergo low response rate chemotherapy (traditional treatment), but rather can take a less taxing, higher response rate targeted drug.  It has saved countless lives.  Most importantly, it shows that we are finally on the cusp of understanding how to defeat this disease.

The Addario Lung Cancer Medical Institute (ALCMI), the sister organization to the ALCF, is going to apply this same targeted therapy strategy in the GoYLC.  Young lung cancer patients’ tumors will be collected and studied.  With the backing of USC and the Dana Farber Cancer Institute, ALCMI hopes to find genetic markers and connections among the tumors, which would lead to more effective treatments and a better understanding of who is at risk.

I am beyond excited for this study.  Ever since I started dedicating my time to ALCF I have been inundated with calls from newly diagnosed young lung cancer patients.  It has been both heartbreaking and rewarding.  These are young, healthy people who had their entire lives ahead of them until they, too, had a similar conversation with their doctor.  Just last week I had to tell a 22 year old, recent Cal Berkeley graduate who had just climbed Mt. Kilimanjaro but then received a Stage IV diagnosis, that she was in for the biggest uphill battle of her life.  In my fight, I have been a firm believer in a positive mindset and the overall power of mind over body.  However, I am also a believer in science.

The GoYLC study is about using science to finally get some answers.  Personally, I want to know why Natalie DiMarco, a 32 year old mother of two, got this disease.  I want to do more than just run a 5k each year in Jill Costello’s honor…I want us to learn from her diagnosis and to never let it happen again.  I want to be able to tell the next 22-year-old patient I meet that we know exactly how to defeat her cancer.  The GoYLC study is launching for this exact purpose.  With USC, the Dana Farber Cancer Institute, and the Silicon Valley based duo of ALCF and ALCMI, I am confident this study is going to improve treatments and save lives.

What you can do:

For those of you non-lung cancer patients (and hopefully that is most of you!), I strongly encourage you to donate to this ground-breaking study.  DONATING can help save the life of anyone you know that has lungs (or even one lung, in my case :) )

We also need patients diagnosed under the age of 40!  If you are willing to participate, it is quite simple – all we need are some tissue slides and a blood test.  In the US, for more information please contact Steven Young, president of ALCMI, at (203) 226-5765 or info@lungcancerfoundation.org, or visit the GoYLC website.  Lung cancer patients living in the US will not be required to travel to any of the above institutions in order to participate.

4th of July Anniversary

I was diagnosed just before Miles’ and my 2nd wedding anniversary. We were overjoyed this year to celebrate our 4th anniversary on the 4th of July, and look forward to many more anniversaries to come. The GoYLC study aims to help other young lung cancer patients reach important milestones in life, too.

Much love. Live in the moment.

EmBen

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.

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