Building An Army

We are proud to be part of this special video highlighting the new studies and support provided by the Bonnie J. Addario Lung Cancer Foundation.  Lung cancer is a global epidemic that needs a global solution.  We are building an army.  Please watch, share, and join us.

Much love,
Emily & Miles

P.S. Happy Birthday, Bonnie J. Addario!  You are our hero!

Second Annual BJALCF 5K

Last weekend over 50 of Emily’s most dedicated and spirited supporters descended on San Francisco for Team EmBen’s second annual appearance at the Bonnie J. Addario Lung Cancer Foundation (BJALCF) “Your Next Step is the Cure” 5K event.  It was beautiful and sunny out – simply a perfect day for thousands of folks to rally together in the fight against lung cancer.  Team EmBen raised almost $10K for the cause, and overall the event raised $320K.  A-M-A-Z-I-N-G!!!!  Here are a few photos highlighting the incredible day…

Team EmBen SF 5K

Team EmBen, fifty people strong, looking spry and spirited, as usual.

5K13_IMG_6028

Emily’s cousin Amy (left) coordinated a top secret operation that brought Emily’s brother, Chris, and other cousin Lindsay (right) in to San Francisco for the race from out of state. Emily was completely surprised and having her family take part in all of the festivities made the day even more memorable.

Nate and Sign Dominating

This is Nate, he is one of Emily’s biggest supporters and, for the second year in a row, he ran the ENTIRE race carrying the Team EmBen sign high overhead. Nate and his wife Melanie have a 3 month old baby, Parker, who happens to be Emily’s littlest BIG supporter.  He also completed the 5K in an “I Heart EmBen” onsie with a sign on his stroller. Like father, like son..

Emily, Bonnie, and Natalie

Emily with fellow lung cancer survivors and champions of the cause – Bonnie (middle) and Natalie (right)

Taylor Family

The Taylor family used their lungs to dominate the running portion of the event for the second year in a row.  EmTay won the women’s 39 and under division while Rich won the Grand Masters category. Meanwhile, Miles took home the award for most wrist/arm flare.

Lung Run Collage 1Lung Run Collage 2

Lung Run Collage 3

If you did not get to take part in the 5K in San Francisco you can still support this great event.  Click here to make a donation and join the rest of Team EmBen in the fight against lung cancer.

Finally, a great big thank you to James Hall, who captured many of these wonderful images from the day.  If you would like to see more photos, please visit his website here.

Steve Harvey…and One Cup of $5 Tea

Emily made her national television debut on the Steve Harvey Show on Thursday.  She was beautiful, poised, and eloquent as she shared her story and thanked her personal hero and mentor, Bonnie Addario.  If you missed the live show, you can watch Emily and Bonnie’s segment HERE.

EmHam and EmTay at Steve HarveyDuring the Steve Harvey taping, Emily had two familiar faces cheering her on in the audience – her sister in law, Emily Taylor (EmTay), and EmTay’s best friend from college, Emily Hampson (EmHam).  (Note: Miles also managed to sneak in despite not meeting the prerequisite of being named Emily)  EmHam has been a huge supporter of EmBen – she sends regular care packages and will be making the trek from her hometown of Chicago to San Francisco for the Lung Run on September 29th.  EmHam has her own blog and this week she made this poignant post to help raise funds and drive awareness.

One Cup of $5 Tea

Next Wednesday, Sept 25th, I will turn 33.  There was never any question in my mind that I might not reach this age.  That I wouldn’t be married, settled in the suburbs with a toddler hanging off my hip, scrubbing crusted spaghetti sauce off the inside of the microwave.  I am certain I have managed to take for granted most of my 12,000 plus days here on Earth and I have done so with the careless comfort of believing that death was something you fumbled upon in your 80’s and even 90’s.  I have had other vital matters to attend to.  Like fretting over the zit that perennially forms in the crease of my chin and those flights that were delayed over two hours due to tornadoes in the Oklahoma Panhandle and the nor’easter in Maine, and my beloved houndstooth sweater that shrunk in the dryer, not once but twice.  I have been aimlessly distracted, attempting to recall ridiculously devised computer passwords, hunting down parking spots, burning frozen pizzas in the oven, and making sure my daughter didn’t rip the pages out of all the Dr. Seuss books.  For the past 33 years, I have had that pleasure.  This past year, however, everything was jarred.  Shaken up and stirred. 

I found out a year ago this past July that my best friend from college’s sister-in-law had been diagnosed with Stage 4 Lung Cancer at 28.  She was a star volleyball player in college, a newlywed, a gorgeous and avid athlete, and a person who had never once touched a cigarette.  Her name is also Emily.  And I guarantee you she would have given anything that summer to worry about marinara in her microwave. 

Emily’s good friends started a blog last year help keep those who cared for her informed throughout her journey.  She endured multiple rounds of chemo out in Los Angeles, which led to a complete lung removal surgery in New York this February, followed by 28 unrelenting radiation treatments.  With her family, a buttress of steel behind her, Emily has battled, fought, persevered, and maintained her lovely sense of humor and gracious spirit with gargantuan grit and guts.  She is officially NED (No Evidence of Disease) as of this spring, and is gaining her strength and stamina back little by little with the support of streaming Netflix, electrolyte water, daily walks with her pooch, and her loving and devoted husband, Miles.  Likely not in that order.

A few weeks ago I had the pleasure of being a guest in the audience when Emily made her television debut at a taping of the Steve Harvey show here in Chicago. The producers had flown her in from the West Coast so that she could surprise and thank her mentor and hero, Bonnie Addario, Founder and President of the Bonnie Addario Lung Cancer Foundation, who has raised over $10 million for research, medical support, and awareness to eradicate this devastating disease.  There was Steve Harvey’s perfectly-positioned couch.  And there was this breathtakingly beautiful girl with long brown hair and a poppy red dress, poised and postured with her ankles crossed under the glare of the studio cameras.   The gasps in the audience were audible when it was revealed that she was in fact the face of lung cancer.  This bright young woman, oozing with the promise of a giant life yet to live, sitting there, confiding her brutal battle to simply survive. 

I was shocked at how neglected lung cancer funding is when I did some digging online.  It is the most lethal cancer, and yet it receives the least amount of funding from the National Cancer Institute.   It garners a fraction of the dollars that go to breast cancer, for example, and yet is second only to heart disease in cause of death.    There seems to be a stigma associated with lung cancer as a smoker’s condition that is self-inflicted.  However, more and more young non-smokers and especially women are contracting it.  All the while funding is desperately needed to aid these patients and educate the public on belying the myths of lung cancer.  Even the ribbon signifying the disease was formerly clear, giving subtle reference to its invisibility and lack of deserved attention.  It has since evolved to white and I will be proudly wearing that ribbon next week when I run in the Your Next Step is the Cure 5K in San Francisco with Team EmBen.  Did I say run?  Okay, jog… well, powerwalk for sure.  I will cross that finish line though, despite being embarrassingly out of shape and floppy in various key places. 

Which leads me to my 33rd birthday.  I’m not in the habit of buying lavish birthday gifts for my compadres, but who doesn’t love splurging on a draft pint or classy cosmo for a friend, toasting to their companionship and to another year of warding off grey hair?  Pretend I am that friend this week….. that you are treating me to a steaming cup of earl grey (decaf for those who really know me) and a long overdue chat, and instead toss some change to the Bonnie Addario fundraising site in honor of EmBen.   I even put the website here to make it easy for you: CLICK HERE TO DONATE!!!

And remember to set your DVRs this Thursday, September 19th to watch a poignant story of survival and support unfold on the Steve Harvey Show (NBC).  Never mind that it comes after a teen sexting segment, I promise you will be moved.  I promise you will turn off the television and not care that you forgot to buy the orange juice at the supermarket.  And I hope you may just feel inspired enough to “take me out” for a $5 tea… 

                                                                                           

There is still time to donate or register to join EmBen, EmHam, and EmTay at the Lung Run in San Francisco as they walk/powerwalk/run to end lung cancer.  All of the details can be found HERE.  Thanks for your support, hopefully we’ll see you next weekend!!!

https://vimeopro.com/lungcancerfoundation/news/video/75054783

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!

Workin’ Out

Two Miles!

Two miles – nailed it!!!

During the first months after returning to Los Angeles following surgery and radiation in New York, rest was the name of the game.  Emily battled extreme exhaustion as her body worked to recover from the huge ordeal that it had just undergone.  While she still spends the majority of her time resting, Emily also has a firm focus on fitness and is incorporating more exercise into her daily routine to help improve her strength and develop additional capacity in her remaining lung.

The workouts started small with a slow stroll to take Ginny around the block each day.  Much to Ginny’s delight, Emily’s stamina has continued to improve and now they can walk together for a slow, but steady, two miles at a time.  Research has shown that cycling is one of the best forms of exercise for increasing lung capacity so Emily promptly bought a stationary bike online.  Emily is working on building up her stamina and currently has a personal record of 22 minutes on the bike.

Bike Assembly

Much to Miles’ dismay, the bike did not come pre-assembled.

Recently, Emily met with her pulmonologist who performed some pulmonary function tests (PFTs).  For the average person, the right lung is responsible for ~55% breathing capacity while the left lung is responsible for ~45% (it is smaller because the heart resides more on the left side of the body).  During the PFT, Emily (who only has the left lung) tested at 54% capacity though – woohoo for increased lung function!!!

Emily continues to sleep 10-12 hours a night and spends most of her days resting.  She is eating healthy and trying to consume as many foods as possible that have been shown to help with lung cancer (broccoli, whole grains, etc).  Her regimen also includes supplements and vitamins with lung cancer fighting benefits four times daily.

Next up on Emily’s list of fitness goals – hit the 3.1 mile walking mark so she will be ready to tackle the “Your Next Step is the Cure” 5K run/walk in San Francisco next month.  Stay tuned – there is more on that coming soon!! 🙂

Emily Beyond

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

Papaya Leaf Tea

There are many food, herbal, and medicinal supplements thought to be effective in improving the body’s immune system, curbing the growth of cancer, and negating the side effects of chemo and radiation.  Emily had been taking L-glutamine, for example, based on a number of studies demonstrating its effectiveness in reducing the ghastly esophagus pain associated with radiation, and it was a godsend.

While in New York, Emily and Miles visited with an expert in Integrative and Complimentary medicine (differing from Alternative Medicine in that it is used in conjunction with, not in lieu of, traditional cancer treatments). They were able to discuss the efficacy of supplements that had been recommended to them and learn about others.

Since Emily’s diagnosis, many people have suggested supplements used to treat lung cancer in their native lands.  One such generous man is Hien Nguyen, who works with Miles’ father, Rich.  Hien mentioned to Rich that the Vietnamese drink papaya leaf tea to treat lung cancer, and that he personally has two friends with lung cancer who have consumed the tea for more than 10 years and attribute their survival in part to the tea.  Hien said if Emily was receptive to the Asian remedy, he would find a way to deliver it.

Emily, a tea lover anyway, said she would definitely give it a try.  This is the path that keeps Emily supplied with a steady delivery of papaya leaf tea:

Nha Trang

Hien contacts his friend Hai Tho Phan in Houston, Texas. Hai communicates with his relatives in Vietnam who own papaya trees. This lovely woman in Nha Trang (who dressed especially for this U.S. blog photo) picks the leaves from this papaya tree for Emily.

The Herb

This is the shipment as it makes its way through customs (and has yet to be confiscated).

Hien and Rich

Hien delivers it to Rich at SBA in Sacramento.

Rich to Emily

Rich takes it and brews up the tea for Emily, who drinks several flavorful cups every day.

LIVESTRONG

EmTay  LivestrongLast month, Miles’ sister EmTay was in Austin, Texas for the South by Southwest (SXSW) Conference and had the opportunity to attend an event at the LIVESTRONG headquarters.  EmBen’s care team is a huge fan of the LIVESTRONG website.  It has been their go-to resource for remedies to lessen the debilitating side effects of chemo, surgery, and radiation, and for investigating alternative therapies and supplements. The website presents information clearly and succinctly, based on research and scientific evidence, and helps patients and caregivers understand what is effective and what should be avoided.  The website will be an integral part of the next step in designing a program to rebuild EmBen’s strength and immune system to keep her healthy.

While at SXSW, EmTay ran into her friend Ronen who mentioned he had been following EmBen’s story.  According to EmTay, the only thing bigger than Ronen’s heart is his personal network.  He immediately started contacting his connections at LIVESTRONG and they were as touched by EmBen’s fight as we all have been.

Within days, LIVESTRONG IT Coordinator Kammie Russel put together a care package and the staff wrote inspirational messages to Emily on a large yellow poster.  It was quite a hit!

EmBen Livestrong

Idaho State High School Hurdles Champion and Scripps College All-Conference Volleyball Player, Emily “EmBen” Taylor, was pumped by the LIVESTRONG delivery that arrived  while she was recovering from surgery that removed her right lung and simultaneously undergoing high dose radiation treatments for stage IV lung cancer.