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

Full Circle – Our Dream House!

Last summer, Miles and Emily were actively searching for a home.  In fact, as you may know, the week before she was diagnosed they had made an offer on a place.  Today, Emily and Miles are celebrating NED by coming full circle and moving into their new home in Woodland Hills, CA! It has everything they’ve dreamed about — most importantly, space for their future family.

house

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!

Cheers to 6! Cheers to 100!

Exactly six months ago, Emily underwent an extrapleural pneumonectomy at the Mt Sinai Hospital in New York.  After the procedure, Emily’s thoracic surgeon, Dr Raja Flores, shared the incredible news that she had no evidence of disease.  They had successfully removed all evidence of lung cancer from her body.  Emily had achieved the elusive goal of NED!

Exactly 100 posts ago, this blog was launched.  It was meant to keep Emily’s close friends and family updated on her treatment and progress, but evolved into much more than that.  Friends shared it with their friends who shared it with their friends who shared it with their friends.  The blog made its way to other lung cancer patients and their caregivers.  Lung cancer is a grim diagnosis but Emily’s story is one of hope, love, and survival.  As of today, the blog has had 175,000 views from 121 different countries around the globe.  Many, many heartfelt thanks to everyone who has supported Emily along the way and helped share her story with the world.  You have not only helped Emily in her own journey to beat lung cancer, but are helping inspire other patients to achieve same.

Cheers to Emily for six months NED, and many more milestones to come!  And stay tuned – they will all be chronicled right here 🙂

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

Farewell to New York

Raditation CompleteEmily joyfully updated her radiation progress on the Courtyard Marriott window to 100% complete!  She and Miles could not have asked for a more comfortable stay or a more accommodating staff.  And the only glitch, a false fire alarm that caused an evacuation and disabled the elevators on Easter weekend, let Emily know she is capable of climbing 10 flights of stairs.   Oh, and Miles’ personal best is 19.8 seconds by Emily’s stopwatch – that’s room to ice machine and back.  They remain the couple who can make a game out of everything.

ReclinerAlthough treatments have concluded, the radiation continues to work inside her and Emily will be resting a lot over the next few weeks.  Unfortunately, it will be without her leather throne, but it has found a new home.  After getting every last minute of use out of it, Miles and Emily delivered the recliner to Esperanza Center, a school for the developmentally disabled in Harlem, where Uncle Jim is the Director.

Emily was instructed to eat anything and everything possible during radiation to prevent rapid weight loss.  So despite severe nausea, she forced herself to eat and Aunt Grace worked to find new foods that Emily could tolerate.  After nearly three months of surgery and radiation, Emily stepped on the scale one final time.  The result – exactly the same weight as when she first came to NY!  But after a quick Google lookup, Emily revised that outcome.  “You have to take into account my missing lung,” she said.  “I’m actually up two pounds!”

Dinner and Desserts

The cousins also get credit as they took to baking desserts to help Emily with her weight, including John and Maire’s multiple lemon cheesecakes and caramel brownies, and Gren’s fig torte.

LaundryHave you ever wondered how much laundry two people who rarely leave their hotel room produce?  Well its enough to eventually break the washing machine.  Michele was not about to send the couple home with suitcases of dirty clothes, so Uncle Jim and Rich put their heads together and came up with a temporary solution using an old light switch they found in the basement.  Nice going, guys!

Dr. Flores

Dr. Flores gave Emily a clean bill of health at their final meeting on Monday.  Emily was able to view her latest scan and see all that was missing: no lung (kind of weird), no cancer (absolutely freakin’ awesome)!!!!

Emily has not only been fortunate to receive top notch medical services at Mt. Sinai, but also to have superior health insurance with Anthem Blue Cross.  All concerns have been handled promptly to provide her with uninterrupted medical treatment during her stay in NY.   Even though Emily no longer receives insurance through her employer, she has been able to continue her coverage privately.  A special shout-out to Michele’s employer, Buzz Wiesenfeld, who jumped in to make the initial premium payments so that Emily’s care would continue without disruption.

Celebration DinnerEmily and Miles missed cousin Deirdre and Carlos’ wedding last summer when chemo started, but they were able to catch up and celebrate at Madame Claude’s French restaurant on the eve of their departure. The farewell dinner was also a birthday celebration for Aunt Grace and Emily, both of whom are turning 29 next week.

The Taylors are en route back to the west coast now. They are traveling together to Phoenix and will then go their separate ways. Michele and Rich will fly north to Sacramento, while Emily and Miles continue west to Los Angeles.  California cannot wait to welcome you guys home! 🙂

Leaving NYHomeward Bound

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Bonnie is My Hero

So many people have supported me on this journey and I wish I could thank each and every one of you individually.  Truth be told, there are simply too many of you…our world is full of kind and generous people.  But I do want to acknowledge one very special person, a woman who has not only given me invaluable advice and support, but who also knows first-hand exactly what I am going through.

Bonnie Addario is a 7-year survivor of Stage IIIB Lung Cancer.  Like me, she underwent chemo, radiation, and surgery, and attributes her cancer-free status to the state-of-the-art care she received.  Upon recovery, this former oil company executive put her retirement plans aside to dedicate her life to changing the mortality rate of lung cancer.  Her goal is to make survival the norm and not the exception.

In 2006, Bonnie founded the Bonnie J. Addario Lung Cancer Foundation (BJALCF) and it is now one of the largest philanthropies devoted exclusively to eradicating lung cancer.  With Bonnie at the helm, the Foundation is made up of a diverse group of physicians, industry partners, and survivors and their families.  Together they have raised more than $9 million for lung cancer research, education, and treatment.

Bonnie chairs the Foundation, is matriarch of a large Bay Area family, and still finds time to send me texts and emails and beautiful messages that champion my progress.  Before we ever met face-to-face, she enveloped me into her fold, and has been effusive and unrelenting with her encouragement and love all along the way.  When I receive good news, I cannot wait to call her.  When I am not sure of my next step, I know she will offer guidance.

Bonnie says: “Empowered patients live longer.  Our message is simple – We want to live.”  I am presently focused on the demands of my daily radiation treatments, but, in less than one week, I will return home to California and begin working to rebuild my immune system and to regain my strength.  Then it is my intent to put my renewed energy into helping Bonnie do for others what she has done for me.

I love you, Bonnie . . . EmBen

Emily and Bonnie

Bonnie J. Addario Lung Cancer Foundation Chair and Founder, Bonnie Addario, and Emily at last year’s “Your Next Step is the Cure” walk/run in San Francisco. Bonnie presented her fellow lung cancer survivor with the “Spirit of Hope Award.”

Gifts from Bonnie

When Bonnie isn’t sending Emily messages of encouragement, she’s sending gifts: robes and slippers, champagne and chocolate, and ridiculously fun things like 5 lb. gummy bears and a pillow of famous lovers: Romeo and Juliet, Antony and Cleopatra, Emily and Miles.

Three Days…

Emily has been suffering from extreme nausea as a side effect of radiation [boo!].  Last week they found a medicine that finally brought the nausea under control [yay!]…and then caused her to break out in terrible hives from head to toe [boo!].  Most recently, Emily was given a new medicine to take care of the hives which unexpectedly helped her feel much better overall [yay!].  So much so that she took her first real walk outdoors since arriving in New York two and a half months ago.

It’s been a roller coaster ride but Emily is officially on the home stretch.  She just has three days of radiation treatments left – JUST THREE DAYS!!!

Three Days

Emily and Miles walk along the boardwalk outside the hotel on the first warm day of the year