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.

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

Emily Out Of Surgery!!!

Emily made it through surgery!  Her lung, lung lining, diaphragm, lining of the heart, and all chest lymph nodes have been removed.  There are no signs of cancer outside the lung lining.  All cancer was removed.

Emily has NO visible signs of cancer!!

According to her surgeon, Emily will be in extreme pain for next few days so please keep sending her your best healing thoughts.  But know that no matter how much pain Emily is in, nothing will stop her from smiling over hearing the words “cancer free” 🙂

Thank you all for all your support.  We’ve needed every bit of it.

Love,
Miles

Emily and her family together in the wee morning hours before surgery.

Emily and Husband of the Year Miles in matching pre-surgery plaid.

Emily just a few hours away from being cancer free.  Simply, beautiful.

A-M-A-Z-I-N-G News

After six months of treatment and seven rounds of chemotherapy, Emily had a PET scan on December 31^st.  A PET scan examines the entire body (eyes to thighs) for “activity” uptake on a scale of 1-10, and thereby highlights the location of cancer in the body.  Emily’s last PET scan was in July prior to any treatment.  The test revealed a lung that “lit up like a Christmas tree.”  Emily’s tumor measured in at an 11 (one of the few times extra credit is not a good thing).  Meanwhile, her lymph nodes and pleural lining both had levels of 7.5.

After Emily’s most recent meeting with her oncologist, a new PET scan was ordered in order to examine the possibility of surgery.  The test would need to show cancer only in the tumor though, with no signs of activity in the pleural lining or lymph nodes.

On January 2^nd, during Emily’s daily four mile walk (which she has been doing in preparation for potential surgery) we received a phone call from City of Hope.  The results were in – Emily’s pleural lining and lymph nodes both had activity levels of 0.  The tumor now had a level of just 1.9.

                

What this means:

First, Emily is a complete badass.  She is a real life superhero.  Second, the cancer in the pleural lining and the lymph nodes has been wiped out.  Surgery is now a possibility.  Third, the tumor shows barely any activity; cancer levels are generally above 3.6.  There is great reason to believe that the tumor inside Emily is merely a dead mass of scar tissue.  However, we are trying (although difficult) to maintain a conservative approach and assume there is more cancer to defeat.

In any case, determining the correct next step in treatment is crucial.  Emily will meet with City of Hope’s lung surgeon – Dr. Kim – this Thursday (January 10^th).  Following the meeting, Emily’s case will be presented to the thoracic tumor board, made up of City of Hope’s lung oncologists, radiologists, and surgeons.  She is very excited about the interdisciplinary approach, and is anxious to hear the game plan.  Regardless of the next step (surgery, radiation, etc.), and due to the fact that this type of cancer is particularly aggressive and has a high rate of recurrence, Emily will most likely continue to receive maintenance chemo every third week for the foreseeable future.  Although not ideal, Emily fails to see it as a restriction, but as a means to freedom from this cancer.

Emily took time to celebrate this wonderful news with friends and family at Bruhaus – the same location where we held her chemo kick-off party back in July.  It was an amazing night, and we could not believe how much she has been able to accomplish in these past six months.

Emily and I feel we have nearly climbed to the top of the mountain.  Although there is more to go and there will be a long climb back down, we feel extremely fortunate to be so close to the peak.

Thank you all for your prayers and support.  We truly believe you all are making a difference and have been an integral part in Emily’s battle.

Much love.  Live in the moment.

Emily & Miles

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 1^st 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!

Still Shrinking!

Emily has done it again!  The test results are in and the tumor has shrunk.  A quick breakdown of the most recent scan:

• The tumor has decreased from 24mm x 19mm to 20mm x 15mm.

To get a better idea of the massive decrease in the tumor since the start of chemotherapy, here is Emily holding in her right hand the equivalent of the original tumor size and in her left hand the puny, remaining tumor size.

• The lymph nodes decreased dramatically to 15mm x 10mm & 12mm x 9mm.  Normal, non-malignant lymph nodes are 10mm x 10mm…looks like we are almost there.

• The thickness of the lining of the lung has decreased from 9mm to 5mm.  And that, folks, is the thickness of a normal healthy lung lining!!!

As a result of her incredible success, Emily’s oncologist has ordered 2 more rounds of chemotherapy with the powerful carboplatin.  Generally, this George Forman-esque chemotherapy is only used for 4 rounds due to the toll it takes on the body.  However, Emily is still just as vivacious as ever, and simply exudes life and health.  And thanks to that, cancer has to get knocked around in the ring for two more rounds with the heavyweight.

Personally, I cannot state how proud I am of Emily.  Cancer is not only a physical battle, but an emotional one as well.  Emily’s determination and inner-resolve have not waivered once.  She is steadfast in her belief that she is her own statistic and there is only one possibility: her beating this disease.  Each day, she remains committed in her approach by meditating three times, drinking at least a gallon of pH water, consuming three glasses of grapefruit juice (and now Pomegranate juice) to enhance chemo’s effect, taking supplements (usually with olive oil), eating plenty of iron (to counteract the chemo-caused anemia and to avoid a blood transfusion) through steaks and Steelers games, and of course remaining positive and enriching all of us with her smile.  As I have felt for the past eight years together, I feel so fortunate to share my life with her.

Emily will start her fifth round of chemotherapy Monday (10/22).  Once again, she will be re-charged and ready to fight thanks to all the love and support she keeps receiving daily.  Thank you all for the letters, the gifts, the bottled water, the phone messages, the texts.  We cannot state enough how much each gesture means to each of us.  Emily is not alone in this fight.  Thank you.

Lastly, we would like to congratulate website guru, Annie Daun, on her engagement Saturday night to John Meyer.  John proposed on the Claremont McKenna campus following the Dig Deep, Beat Cancer volleyball event.  John, you made a great decision.  Cheers to you both.

Love to all.  Live in the moment.

Miles (and EmBen)

P.S.  Happy Birthday on Monday to the original Emily Taylor (EmTay).  We love you and thank you so much for your constant dedication to finding a path to EmBen’s recovery.

Breaking News!!!

Emily had a CT scan yesterday to evaluate the effects of the first two rounds of chemotherapy.  The results according to City of Hope: PHENOMENAL!

Emily at work telling her team the great news

The tumor has been reduced by half, along with the lymph nodes.  The lung lining is greatly improved and there is no evidence that the cancer has spread anywhere else in the body.  Most fluid has been cleared from the lungs, which has contributed to Emily feeling stronger and breathing better.

Additionally, we learned this week that MIT identified the driver gene of the cancer, allowing for the possibility of genetic targeted treatments in the future.  For now, Emily has been cleared for two more rounds of chemotherapy.  Bring it on.

Thank you for all your kind thoughts and prayers.  Keep them coming – together we’re going to beat this.

Love to All.  Live in the Moment.

Miles

Save the Date – 10/20/2012

Not so very long ago Emily was a star player on the Claremont-Mudd-Scripps (CMS) volleyball team.  CMS is a member of the Southern California Intercollegiate Athletic Conference (SCIAC) which named Emily ‘Rookie of the Year’ her freshman season and then to the All-SCIAC conference team every season after that.

It’s a SCIAC tradition that one week each season all of the volleyball teams put aside their rivalries and work together to raise money for cancer research.  Yesterday, the conference coaches voted unanimously to dedicate this year’s special effort to Emily’s fight against lung cancer.  On October 27^th, teams across the conference will join forces to support Emily and to celebrate people across the world battling cancer.  As one coach laughingly put it, “That left hand of hers caused us a lot of problems…we’re in!”  All proceeds will go to the EmBen Kicks Cancer fund.

The CMS Athenas will be away at Occidental College that night, so CMS will also host its own event on Saturday, October 20^th.  CMS invites you to join Athenas Volleyball and Stags Basketball athletes, past and present, as we support Emily and Miles in a true show of teamwork and solidarity.  Please mark your calendars for a 6PM showdown with nationally ranked Cal Lutheran University on October 20^th at Ducey Gym, followed by a dessert reception and other fun shenanigans.  Stay tuned for additional details..