Pause. Play. BABY!

It was the first scan that I was nervous about…I mean really nervous.   So much was riding on this.

Statistically, 2 years of clean scans showing No Evidence of Disease (NED) represents a significant milestone and increase in survival.  But to be honest, as I’ve stated many times on this blog, I’ve never been one to be too hung up on the statistics.

Rather, the 2 year mark was so nerve-wracking because it signified something even bigger…something that cancer so cruelly pauses upon diagnosis…it presented me with the opportunity to finally push play on my life again.

Since my diagnosis in June of 2012, I’ve been the cause of so much stress and pain on my family.   Of course, they all never complain, but I could easily see the effects.  It’s not hard when Miles is continually gripping his chest and trying to beat the ulcer out of his stomach.  Or, when I call my grandparents and my grandmother cries each time she says goodbye to me.   I hate seeing my loved ones hurting over me.   I once asked Miles to just relax and breathe easy, and he told me, “I’ll breathe normally when you’re 2 years NED.” So, I internalized his comment and earmarked that 2 year date.  Each night, I’ve prayed and hoped for it to come sooner, as with it, I hoped it would finally bring peace to my family.

embryo art

We turned the pictures of our embryos into art, a constant source of motivation.

Perhaps what loomed largest though was the opportunity to start a family.  The first step we took after diagnosis was preserving our fertility.   Those nine embryos became my motivation.   I was no longer just fighting for myself.  I was fighting for my future family.   Each morning during meditation I would picture and see this family.  Hold them, love them, imagine a life with them.  It fueled me.  It inspired me to fight harder.   But, we were instructed not to consider a family until 2 years of clean scans, so that dream, like most things after diagnosis, was put on pause.

So a few weeks ago, as we sat there in the doctor’s room waiting for the results of my two-year scan, I could hardly control my emotions.

And then Carrie, our wonderful nurse practitioner, walked in and in her classic nonchalant way, looked at me and said, “You’re fine!”

em and reckamp and carrie

With my amazing care team,         Dr. Karen Reckamp, and Carrie Christiansen RN, MSN, C-FNP.

I broke down.  I sobbed.  I fell into Miles and cried.  I let years of frustration and fear out of me.  He held me and then whispered in my ear, “You’re going to be a Mommy.”   And I cried even more, but with the biggest smile on my face.

As we shut the car door, ready to head home after seeing Dr. Reckamp (who, by the way, switched me to the twice-a-year schedule for routine scans – YAY!), I paused  and looked over at the fountain in front of City of Hope.  Nearly three years ago, Miles and I and our families had held each other at that fountain after learning I had Stage IV lung cancer.  Today, I looked at that same fountain, and just reeled back and screamed, “I’m NED!!!!”

It takes a village to raise a child.                     It takes Team EmBen to grow a baby!

Baby pics together

Baby pics from Miles and me at around the same age. I’m so excited to have a little cutie like him!

Miles and I are beyond excited to push play again on life, and start our own family.  But the reality is, we can’t do it alone: we will need a surrogate.   The hormone surges caused by pregnancy have been shown to be linked to recurrence of lung cancer.   As such, I have been advised by my doctors to not carry our embryos myself.

Since Team EmBen has been so resourceful and supportive in the past, we are reaching out to all of you for help in finding a surrogate. We would love to undergo this process with someone who comes from a trusted source.  We understand this is such a large ask of someone, as a pregnancy is a considerable undertaking.  However, if you know of anyone who may be interested in providing this immeasurable gift, we would love to hear from them.

Some questions that may arise:

  • When are we looking to have our child?

Ideally, we are hoping to perform an embryo transfer as soon as possible, preferably this summer.   So, yeah, that’s soon.

  • Is there compensation?

Yes, of course!   Money for this process was so thoughtfully donated to us at the time of my diagnosis.  We would love for this money to go to someone we know (or someone who knows someone we know!), rather than an agency.

  • Who are you looking for?

Ideally, surrogates have no major medical issues, have at least one of their own children, had pregnancies and deliveries with no complications, and are physically healthy.

  • What would be expected of me (surrogate)?

Essentially, there would be 3 appointments in Los Angeles.  Each appointment would be a month apart.   You would be able to choose your own OB/GYN at home, and the baby would be born wherever you are.   In the meantime, your only job would be to have a healthy pregnancy.

 If you, or anyone you know, may be interested, please email us at eebennet@gmail.com.

post scan on bench

Sitting by the fountain at City of Hope, taking a moment to celebrate this wonderful milestone.

As ever, thank you all for joining and supporting us on this journey.  We are so grateful to our loving Team EmBen supporters!

Much love. Live in the moment.

Emily & Miles

 

A Lost Survivor

Today, I am heartbroken over the loss of a fellow lung cancer friend.Paul and Cady

Last night, Paul Kalanithi died at the age of 37.   Paul was a renowned neurosurgeon at Stanford, dedicating his life to saving the lives of his patients. Lung cancer, though, reversed his role from doctor to patient, and then eventually took his life.  Paul passed away last night while holding his 8 month old baby girl, Cady, and leaving behind his amazing wife, Lucy.

I met Paul and his wife in November at the Addario Lung Cancer Foundation’s San Francisco Gala.  He was a shy, courageous, loving man.   We stood next to each other on stage when survivors were honored.  We had just met, but we were fighting side by side. Today, I am beyond saddened by the news of Paul’s passing.

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I am always reluctant to press upon you all to donate or give to the cause.  I already feel indebted to everyone who reads this blog for what you have given to me in my fight.   However, in Paul’s honor, I am compelled.

I ask all of you to support a cause to stop this disease from stealing any more patients like Paul Kalanithi.   Like me, Paul was a young lung cancer victim.  The Genomics of Young Lung Cancer Study (GoYLC) is specifically geared to study young lung cancer, with the goal of scientifically determining the cause of the disease, as well as how to defeat it.  It is a revolutionary study.  And most importantly, it could have saved Paul’s life.

The GoYLC study is now up on crowd-funding site Consano. Even $20 will make a difference. Please click HERE to donate.

 

More Info on GoYLC:

If you are interested in learning more about the study, ALCF held an Adolescent Young Adult speaker series 2 weeks ago.  I was a participant, along with other young lung _DSC0025cancer patients, Corey Wood (23 years), Sandy Jauregui-Baza (31), and Chris Draft (lost his wife, Keasha, at age 33).  You can click here to see a recording of the live streamed event in which we reveal our stories and emphasize the need for this type of research, while Dr. Barbara Gitlitz carefully explains the science behind the study.

Gracias a Dr. Flores

Hello from Tulum, Mexico.  I just sent Dr. Flores an email, and I wanted to share it with all of you.  While it may have been influenced by some amazing tropical happy hour drinks, the sentiments are real.  I am so grateful for all of you, and most especially, Dr. Flores.

Dr. Flores –

maya 1

It was slow-going, but I made it!

I just wanted to let you know that today in Coba, Mexico, I climbed 10+ stories to the top of a Mayan ruin. It was, in a word, incredible. I’m tearing up just thinking of it, since this is such a milestone.

We rented bicycles to get from ruin to ruin, which in and of itself, in the hot temperatures and high humidity, was difficult enough. Then to be able to climb to the top of that pyramid…to be honest, I couldn’t be prouder.

Thank you for this opportunity. Thank you for a chance at this life. Thank you for hope.

MUCH love.
Emily

maya 4 maya 3 maya 2maya 5 

“I Feel Normal”

It wasn’t until our flight to New York City that the reality of what she was embarking on finally set in for EmBen.   Midway across the country, thousands of feet in the air, she looked over at me.  Fear had whitewashed her face.   She began to cry, and asked, “Will I be okay?”

Since her diagnosis, EmBen had been hell-bent on cutting the cancer out of her body.  Despite every oncologist and surgeon stating otherwise, she refused to acknowledge that a Stage IV diagnosis restricted her from surgery.   It was her plan and she knew it would be a reality.

When Dr. Flores presented the opportunity for surgery in New York City, she jumped all over it.  EmBen was ecstatic.  She flooded him with questions about how quickly she could have the surgery and any potential roadblocks.  Not once did she ask him a question about surgical success rates, past patients, or life limitations with one lung.  She had blinders on and she was on a straight sprint for survival.

For the next few weeks, my mother and I prepared by spending countless hours researching the internet about complete lung removal surgeries and recovery.  Meanwhile, EmBen planned what tourist attractions she wanted to see while in NYC.  She had this aura of confidence and trust.   It was highly impressive, yet almost inhuman.

But there on the plane, once she knew the plan was in motion, she finally let reality set in.  “Will I ever be able to walk again?”   “Will I ever be able to play with children?”   “Will I be able to pick up a child?”  “Will you have to take care of me forever?  I’m so sorry.”

Emily had vowed from the first day of diagnosis to do whatever it took to survive.   The success of the upcoming surgery in preventing cancer recurrence was anything but guaranteed, but it provided an opportunity for life, and with that, EmBen was committed.  It was the emotional commitment to mutilate her body and forever change the way she lived her life that gave her greater pause.  In that, she finally found fear.   I wanted to relieve all of her doubt, but I too didn’t know what to truly expect.  So, I just held her.

By the time we started our descent, EmBen had regained her buoyancy and was prepared for the “new normal,” a life that was perhaps missing past action and movement, but replaced with more appreciation and love.

The months of recovery, as documented on this blog, were incredibly challenging, filled with pain and fatigue.  Slowly, she adjusted.  Yesterday, though, was a significant day.

After I returned home from work, EmBen was recounting how she had exercised for 45 minutes, then went to the grocery store, then the post office, and finally Target before returning home.  As she lay there motionless on the couch, preparing for a nap, she looked at me and said, “Miles, I feel normal.”

Christmas CardSure, in reality, it may be a new normal.  But those words hit me deep.  I’m just so happy for that fearful EmBen on the plane nearly two years ago.  I just want to go hold her once again and tell her to have no fear.  She is embarking on the greatest decision of her life.

Thank all of you for your support and love in 2014.  EmBen and I are so grateful and excited for 2015.    May we all celebrate this year.

Much love.  Live in the Moment.

Miles & EmBen

Dance Dance Revolution

November 8th was the annual Bonnie J. Addario Lung Cancer Foundation’s (ALCF) Gala.

I first attended this event in 2012, only months into chemotherapy and still in the whirlwind phase of diagnosis.  The Gala allowed me to meet other patients and survivors.  It was a pivotal point in my journey as the event filled us with hope.

The following year, I attended while still recovering from radiation and adjusting to a life with one lung.  When Bonnie called upon me to speak to the audience and share my story, my journey once again took a major change.   It sparked a passion in me to join the fight to raise lung cancer awareness.

JCH_7350 copy

Me with new patient, Corey Wood at her first – of many – ALCF Galas.

At this year’s Gala, as the audience listened to the leading oncologists and researchers speak on this year’s advancements and the future possibilities, I found myself holding the hand of a new patient, a beautiful 22 year old woman, Corey.  She was at her first Gala.  Like I did at my first, I watched her grow in confidence throughout the event.    I realized that Bonnie Addario and Scott Santarella have given me the greatest gift.  As a member of ALCF, my fight against lung cancer is not just limited to my personal fight.   I have the opportunity and platform to reach and help so many others.   I am so grateful.

And oh yeah, one more nugget:  Stella’s not the only chick that got her groove back.  After a year break, I found myself back on the dance floor in 2014.  And there’s video to prove it:

Much love. Live in the moment.

EmBen

 

A Decade of Love

October 23rd was an anniversary, and finally one not about cancer.

Some of you may remember my post from last year about my wonderful husband, Miles. Throughout my diagnosis, Miles has been by my side as a caregiver, cheerleader, researcher, and best friend.

This past week, Miles and I celebrated the 10 year anniversary of when we started dating. Alone, that’s an exciting milestone.  Coupled with the fact that it signifies that we’ve spent 1/3 of our lives together made it even more special.

10 year anniversary roof

Miles re-created our 3-month date, in which we snuck up to the roof of his dorm, ate Chinese food, and then watched a movie. The 10 year version still had Chinese food, but he upped the ante by adding a projector to our roof which displayed a slideshow of our last decade together.

I don’t know who or where I’d be if Miles hadn’t come into my life.  All I know is that I am forever grateful that 10 years ago, he sent me on an elaborate scavenger hunt before asking me to our college formal. He makes me a better person each day, and I honestly couldn’t be happier.

Thank you, Miles, for making the last third of my life so wonderful. Thank you for making the last two and a half years a time of love, hope, and courage, despite all odds.  Can’t wait for the next decade, when we’ll be celebrating half our life together.

 

10 years produces a lot of photos…here’s a brief slideshow of the last 10 years:

1st slideshow

Left: The beginning – carving pumpkins in 2004 with webmaster Annie!                                             Right: Our date on the dorm roof, 2 buck chuck included!

2nd slideshow

Left: Thanksgiving 2004 – first time we said “I love you”                                                                     Right: When I landed after studying abroad in Spain, Miles picked me up with flowers and a kiss!

3rd slideshow

Left: He brings out the goofball in me…sumo wrestling!                                                                 Right: Celebrating our favorite holiday – St. Patty’s

4th slideshow

Left: In Memphis with my parents, celebrating our engagement!                                                 Right: We love a good costume party!

5th slideshow

Left: Supporting our Steelers at Heinz Field in Pittsburgh                                                             Right: Enjoying post-treatment life with friends at my dear friend Chelsea’s wedding

Much love. Live in the moment.

Emily

 

 

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