Lung Day 2.0

Last February while in New York City just before the surgery to remove her lung, Emily was nervous about the effect it would have on her ability to do normal daily tasks.  To ease her mind, Miles came up with Lung Day.  Lung Day consisted of numerous challenges – dancing in Central Park, climbing a flight of stairs, and screaming “NED!” from atop of the Empire State Building. The idea was that each subsequent year they would have Lung Day so Emily could compare how she was doing, and be reminded of just how far she had come.

The original plan this year was to return to New York for a one-year follow up appointment with Dr. Flores and have Lung Day in the city; however, terrible winter weather on the East Coast put a halt to that.  Fortunately, Dr. Flores gave a glowing review of Emily’s latest scans and assured her that she needn’t make the trip all the way to NYC…but Miles wasn’t satisfied…

Last month, on the anniversary of her first Lung Day, Miles and EmTay surprised EmBen with breakfast in bed.  The startled yet excited EmBen was instructed to eat quickly as her first Lung Day challenge would start in 15 minutes.

Breakfast in Bed                      Lung Day Tasks

Challenge #1: One Mile Walk
Emily took a one mile stroll with the dogs around the neighborhood.  No breaks.  No rests.
Status: Complete

One Mile Walk          One Mile Walk with Dogs

Challenge #2: Blow Up Balloon
With one of Emily’s favorite new songs playing in the background, she expanded that one lung and blew up a balloon with surprising ease.  No dizziness.  No exhaustion.  She is now qualified to work the local circus.
Status: Complete

Challenge #3: Tour De France
Emily was given a yellow top and a bike helmet (aka Steelers football helmet). Channeling the Livestrong, cancer-beating Lance Armstrong, she rode the bike like a champion for 30 minutes.
Status: Complete

Tour De France

Challenge #4: Scream to the Heavens
After two exhausting workouts, Miles and EmTay did what any doctor would recommend – they sent Emily up a ladder.  Climbing onto the roof, Emily reached the ridge and screamed “I’m NED!”  This was a particular favorite for her as last year she would only scream “NED.” To be able to put a simple “I’m” in front of the word this time held much significance and was a source of pride and gratitude.
Status: Complete

Intermission: Some of Emily’s closest friends and supporters arrived at the house to partake in the second half of Lung Day and root Emily on as she continued to attack the challenges set forth.

Friends  Lung Day Intermission

Challenge #5: Lap Swim
Now that her full cheering squad had arrived, Emily was given the biggest challenge yet: swim one lap in the pool.  Under the guise of safety, Miles dressed Emily in ridiculous children’s swim gear he had purchased: arm floaties (unnecessary) as well as an inner tube (doubly unnecessary).  Fully outfitted, you would have thought Emily had had surgery to add rocks to her belly rather than having an organ removed.  Enjoy the laugh, and marvel at how far Emily has come!
Status: Complete

Challenge #6: Dance to the Music
Although her post-surgery dance moves typically involve a lot of arm flailing with minimal lower body action, Emily is not scared to bust a move.  As always, dancing brings the biggest smile to her face.
Status: Complete

Challenge #7:  Blow Out Candles
Surrounded by family and friends, Emily made a small speech about her happiness for all of the love surrounding her and Miles, and gratitude to be able to celebrate this day.  Then she exhaled like an angry Zeus and blew out every candle on the amazing Lung Day cake that Webmaster Annie had made.
Status: Complete

Blowing Out The  Candles          Lung Day Toast

Lung Day Cake

It was a wonderful, joyous day of celebration!  And most importantly, Emily successfully completed Lung Day after only one year post surgery.  She has rendered moot all of those concerns and worries of living a normal life.

Open Letter to Dr. Oz

The Dr. Oz Show is a daytime talk show hosted by surgeon Mehmet Oz where a variety of different health-related topics are discussed.  On November 29th an episode aired regarding four symptoms that people frequently worry about.  One of the top symptoms was a persistent cough, and Dr Oz assured his young female guest that because she had never smoked he did not think she should worry about having lung cancer.  Does this story ring any bells?  Raise any red flags??  A persistent, dry cough was Emily’s ONLY external symptom of lung cancer.

Emily has written Dr Oz in hopes that he will correct this misinformation that was shared with millions of viewers.  She is just one voice though.  Can you spare one minute to contact Dr Oz and the show’s producers?  We want to request that they dedicate a show to the very real and developing epidemic of lung cancer among young, non-smoking adults.  Do you know someone who works at the Dr Oz show, or perhaps the friend of a friend?  Please make sure that this letter from Emily gets to their inbox!

*************************************************************************

Emily & Miles Taylor

Dear Dr. Oz –

My name is Emily Bennett Taylor and at age 28 I was diagnosed with Stage IV non-smokers lung cancer.  Bonnie J. Addario of the Bonnie J. Addario Lung Cancer Foundation mentioned me in a letter to you in December, regarding your segment on Friday, November 29th titled “The Alarmist Guide To The Symptoms You Worry About Most.”

The only symptom I had was a nagging, persistent, dry cough.

If I had watched your show a year and a half ago, before my diagnosis, I would probably be dead.

VballIn June 2012 I was 28 years old and about to celebrate my 2nd wedding anniversary with my husband. We met in college where we were both athletes, and continued to lead a healthy, active lifestyle together after graduation.  I have never smoked a cigarette in my life.  So you can imagine my surprise when I got a chest x-ray for a persistent cough that I thought must be allergies, and my pulmonologist immediately ordered a CT scan after seeing the results.  And then a biopsy.  And then told me I had advanced lung cancer.

I went through eight rounds of chemotherapy, and was lucky enough (and I do mean lucky) to have surgery become an option.  But it wasn’t easy – on February 8th, 2013, my entire right lung was removed in an Extrapleural Pneumonectomy procedure.  A month later, I began 28 rounds of high-dose radiation to my entire right lung cavity.  I battled radiation nausea and fatigue for months, could barely walk, and now go to physical therapy to try to regain the strength that withered away during those months. Today, eleven months after surgery, I am extremely grateful – and again, lucky – to be considered NED (No Evidence of Disease), but not one single day has been easy.5k12w-3301

So you see, Dr. Oz, my life and my struggle are evidence that the face of lung cancer is not what society thinks it is.  We need to raise public awareness.  Sadly, lung cancer is essentially a death sentence at a mere 15% survival rate; a large reason for this is the lack of early detection due to misconceptions about who is at risk.  Misconceptions that were, unfortunately, propagated by your show.

The fact is that lung cancer is the #1 cancer killer in America.  It kills more than breast, colon, and prostate cancers combined.  Yet, due to the stigma, it is the ignored cancer and is drastically under-funded and consequently under-researched.  More and more non-smokers like me are being diagnosed, and we need to know why and how to treat these people.

BJALCF13-6742

For most new diagnoses, as I’ve learned the hard way, it has nothing to do with cigarette smoking. That is why the Bonnie J. Addario Lung Cancer Foundation is working to find a genetic marker in lung cancer, much like the BRAC gene for breast cancer.  Personally, my new dedication in life is to raise lung cancer awareness and funds so that we can find a genetic component and attack the root cause of lung cancer.

As a doctor, I know your main objective is to help people and save lives. That is why I would love the opportunity to help you correct the dangerous misinformation that was provided in your November 29th show.  Together we can save a life like mine.  I’ve included my website so that you can read up on my story; it was just voted into the “Top 9 Lung Cancer Blogs of 2013” on Healthline.com.  I have been able to connect with and help so many fellow patients, but I would love to continue that work through your show.

Much love.  Live in the moment.

Emily “EmBen” Taylor
embenkickscancer.wordpress.com

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 🙂

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

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.

Recovery & Radiation

The month following Emily’s surgery was dedicated to recovery, and I [Miles] can tell you firsthand that it has not been easy.

The pain was constant throughout the first few weeks.  Emily was on considerable medication to dull the pain; however, with this came numerous, progressively worsening side effects.  As a result, Emily bore down and weaned off all pain meds.  But once again there was a consequence.

By removing the masking agent, the physical magnitude of the surgery was felt in full and it was quite overwhelming for her body.  No longer was she walking several miles on the treadmill, a simple walk to the bathroom now required several stops to catch her breath.

Then during the third week, as expected, Emily went through a depression that left her struggling not only physically but also emotionally.  Emily bounced back with an unparalleled spirit and resolve in a few days though.  Looking at her progress on a weekly basis, rather than focusing on the minute progressions each day, Emily was able to see the immense strides she was making in recovery.  She was deservedly proud of herself.

Less than a month post surgery, Emily was accomplishing lung test levels at 65% of her pre-surgery ability.  She was walking around the city and even up flights of stairs.  And while casually sitting around and even moving throughout the hotel, she stopped noticing a difference.  She started to feel normal.  It was no surprise when Emily went to Mount Sinai and was approved by Dr. Flores to start the next phase of treatment: radiation.

Emily is currently undergoing daily radiation.  She is set to receive 28, high dose treatments.  The radiation is not simply targeted to a small focused area but rather is being applied to the entire right vacated chest area with a specific emphasis on the mediastinum.

Valet parking for cancer patients New York style: five blocks from the front door, $10 cash, stacked parking, and Frankie!

Valet parking for cancer patients New York style: five blocks from the front door, $10 cash, stacked parking, and Frankie!

Radiation is necessary due to the alarmingly high rate of lung cancer recurrence.  We were fortunate to remove all visible signs of disease with the lung, lining, diaphragm, and nodes.  Yet, we must operate under the assumption that cancer may still be present at microscopic levels, especially since that the pathology report indicated lymphatic involvement (small amount of cancer in one node).  Since Emily has had her lung removed, she is able to receive radiation to a significantly large area and with that hopefully eradicate all microscopic cancer cells in her body.

A plaster cast was made to fit Emily’s upper torso to hold her in place during radiation.

A plaster cast was made to fit Emily’s upper torso to hold her in place during radiation.

Each day, we drive into New York City and Emily spends an hour receiving treatment.  She has been fitted for a custom body mold that she lays in, which helps – along with the four dot tattoos now on her chest – ensure she is in the exact same spot each session.  The actual radiation itself only last four to five minutes with a robotic machine moving around blasting invisible rays into her body.  The treatment experience is not bad, but the side effects have proven otherwise.

Tiny permanent tattoos on Emily’s body are aligned with markers on her cast for precise and accurate delivery of radiation. Emily’s radiation tech, Peter, described possible side effects of the permanent tattoos, “You may feel an overwhelming desire to drive a Harley.”

Tiny permanent tattoos on Emily’s body are aligned with markers on her cast for precise and accurate delivery of radiation. Emily’s radiation tech, Peter, described possible side effects of the permanent tattoos, “You may feel an overwhelming desire to drive a Harley.”

As a result of the high radiation dosage, Emily has had a difficult few weeks.  Within 45 minutes of her first treatment, Emily began vomiting.  The nausea worsened over the next few days (she continued to receive treatment) and she was unable to keep down any foods or liquids.  Fortunately, with new medication, Emily was able to temper the nausea (although vomiting is still a daily occurrence).  And thanks to Aunt Grace who is providing daily meals of Chicken Pot Pies, Quiches, Pastas, etc., Emily was able to gain 0.5 lbs last week.  This surprised and pleased the doctors (although I don’t know how pleased my doctor will be seeing that I gained 13 lbs).

Countdown

Emily and Miles track her progress through the 28 rounds of radiation on the window next to her recliner.

Having completed 12 radiation treatments, Emily is now starting to develop a new, harsher cough and esophagus discomfort.  The latter is expected to worsen as well as body fatigue.  Yet, Emily remains strong.  We have written the numbers 1-28 on our window to represent the days of treatment and each day she proudly crosses off a number.  Though lately it has come with a sigh and “Thank God..”

Emily has found refuge in submersing herself in Downton Abbey and Girls, and she longs for the weekend that brings a two day reprieve from treatment.  No matter how difficult it may get over the next three weeks, I have the utmost confidence in her determination and strength.  Last night she jumped up during our nightly meditation and ran (an achievement) for the bathroom.  While hugging the base of the toilet, I walked in and held back her hair and asked her who was stronger.  She garnered her strength and with resolve said, “I AM STRONGER THAN CANCER.”

Love to All from Jersey City.  Live in the Moment.

Miles & EmBen

Jersey Girl

“Exactly why is she in Jersey City?” is the 2nd question everyone asks after inquiring about Emily’s health.  Originally, Emily and Miles envisioned a cosmopolitan life in the Big Apple, living in a quaint neighborhood, shopping at bodegas, and strolling through Central Park.  Then reality set in: treatment would be demanding, weather would be severe, and the cost of housing made LA seem like a bargain.  Two bedrooms (to accommodate caretakers) with an elevator, indoor exercise center, and business services for Miles would run 5 figures a month.  And most places wanted it all up front, sight unseen.  Would there be adequate heat? Hot water? Bed bugs?

That’s when plans shifted to nearby Jersey City, where family was eager to help and EmTay could vouch for the local Marriott.  The hotel manager was receptive to Emily’s needs and her story and they have provided a welcoming, affordable environment for recovery.

The Living Quarters: 

Mariott Living Room

Located on the top floor, Emily and Miles have a two-room suite that includes a separate bedroom and a spacious living room. Shelley and Kevin stocked the kitchen and dressing areas with baskets of food and supplies. EmTay’s godmother sent a blu-ray player, and discs arrive frequently from thoughtful supporters.

Mariott Bedroom

Two thermostats allow Emily (and her stuffed faux Ginny companion) to keep her quarters at a toasty 80 degrees while her internal systems adjust.

Miles’ desk swings around and transforms into a perfect dining table.

Miles’ desk swings around and transforms into a perfect dining table.

And the pièce de résistance is the Leather Throne.  When Miles learned that patients who had a lung removed felt most comfortable in a recliner, he immediately went online and ordered this behemoth beauty.

And the pièce de résistance is the Leather Throne. When Miles learned that patients who had a lung removed felt most comfortable in a recliner, he immediately went online and ordered this behemoth beauty.

Miles uses binoculars from his desk to watch construction of the World Trade Center on the southern tip of Manhattan, while Emily has this amazing view from both her bed and Leather Throne (with the lights changing colors nightly on the Empire State Building).

Miles uses binoculars from his desk to watch construction of the World Trade Center on the southern tip of Manhattan, while Emily has this amazing view from both her bed and Leather Throne (with the lights changing colors nightly on the Empire State Building).

The Environment: The hotel staff has been great, delivering mail to the room twice daily, providing extra supplies, cleaning late in the afternoon so Emily can sleep in, and efficiently carting away A LOT of delivery boxes. 

More Packages

More packages for me?

Champagne and Godiva chocolates, anyone?

Champagne and Godiva chocolates, anyone?

 

In the lobby, Emily can sip tea by the fireplace while Miles works and keeps an eye on her from the business center.

In the lobby, Emily can sip tea by the fireplace while Miles works and keeps an eye on her from the business center.

The Jersey City waterfront has a beautiful boardwalk for when the weather warms up. In the meantime, Emily logs in her miles walking the hotel’s hallway (seen here noting laps on the window with an erasable marker) and on the treadmill, while Miles and Rich make use of the weights and pool.

The Jersey City waterfront has a beautiful boardwalk for when the weather warms up. In the meantime, Emily logs in her miles walking the hotel’s hallway (seen here noting laps on the window with an erasable marker) and on the treadmill, while Miles and Rich make use of the weights and pool.

Mall

And just across the street is a three-story mall with 11 movie theaters, and clothing stores that you just don’t find in California. Emily selected these gems for Webmaster Annie’s June wedding.

The immediate neighborhood includes a drug store with a very helpful pharmacist, a Whole Foods-type grocery store, numerous restaurants that deliver, and a lively Irish pub. Plus a liquor store, in case you need something to keep your heating pad from falling off your shoulder.

The immediate neighborhood includes a drug store with a very helpful pharmacist, a Whole Foods-type grocery store, numerous restaurants that deliver, and a lively Irish pub. Plus a liquor store, in case you need something to keep your heating pad from falling off your shoulder.

The Crew:  Foremost is Aunt Grace.  When Michele’s older brother, Jim, left seminary life and married Grace, the O’Malley family got their very own Mother Teresa. 

Grace has embraced Emily like one of her own and the TLC has been overflowing.  She also houses her in-laws and gives up her car on the days of Emily’s medical appointments (walking three miles to work in the bitter cold).

Grace has embraced Emily like one of her own and the TLC has been overflowing. She also houses her in-laws and gives up her car on the days of Emily’s medical appointments (walking three miles to work in the bitter cold).

Grace has not stopped cooking since the Californians arrived in Jersey City.

Grace has not stopped cooking since the Californians arrived in Jersey City.

Grace keeps a notebook of Miles and Emily’s favorite dishes. Grandma Mercedes’ pot roast topped the list until Emily got a taste of Grace’s Chicken Pot Pie, and ate it straight from the pie plate.

Grace keeps a notebook of Miles and Emily’s favorite dishes. Grandma Mercedes’ pot roast topped the list until Emily got a taste of Grace’s Chicken Pot Pie, and ate it straight from the pie plate.

Miles’ parents stay with Jim and Grace and make the brisk one mile walk to the hotel several times a day to deliver meals and supplies and to pick up laundry.

Miles’ parents stay with Jim and Grace and make the brisk one mile walk to the hotel several times a day to deliver meals and supplies and to pick up laundry.

The arrangement helps reduce housing costs, gives Emily and Miles their privacy, and offers a great kitchen for preparing nutritious meals, like Michele’s homemade chicken noodle soup.

The arrangement helps reduce housing costs, gives Emily and Miles their privacy, and offers a great kitchen for preparing nutritious meals, like Michele’s homemade chicken noodle soup.

Rich delivering the soup: “I now know why people move to Florida.

Rich delivering the soup: “I now know why people move to Florida.”

The daily visits mean continued well-intentioned advice from the in-laws and Emily is as receptive as always. When she discarded half of her sandwich from the popular 2nd Street Bakery (unofficial motto: Everything is better when stuffed into bread) during this “lite lunch” in the lobby, Michele lectured Emily on the importance of beefing up for radiation. Miles jumped to his wife’s defense: "So, Mom, when are you leaving? Michele: “When Emily is 150 lbs." Emily, without missing a beat: "Miles, toss me a sausage roll."

The daily visits mean continued well-intentioned advice from the in-laws and Emily is as receptive as always. When she discarded half of her sandwich from the popular 2nd Street Bakery (unofficial motto: Everything is better when stuffed into bread) during this “lite lunch” in the lobby, Michele lectured Emily on the importance of beefing up for radiation. Miles jumped to his wife’s defense: “So, Mom, when are you leaving? Michele: “When Emily is 150 lbs.” Emily, without missing a beat: “Miles, toss me a sausage roll.”

Josh Visits

Emily has now turned a corner in her recovery. She is visibly stronger, breathing deeper, and just more of her old self. For the first time, she feels up to socializing and, naturally, Josh was her first visitor (how is he always in the same city and have they ever considered a restraining order?).

Cousins & EmTay

This past weekend, Emily ventured out and climbed two flights of stairs for Sunday family dinner with the cousins, who were all overjoyed to see her radiant smile and awed by her recovery.

 

Even Uncle Jim, whose drink of choice is usually a Pepsi, toasted the occasion with a flute of bubbly.

Even Uncle Jim, whose drink of choice is usually a Pepsi, toasted the occasion with a flute of bubbly.

And that should just about answer the question of why Emily and Miles are living across the Hudson, just a stone’s throw from New York, in Jersey City 🙂

Tough Week + Reminder

Emily has had a very challenging week dealing with post-surgery recuperation and recovery, adjusting to life with one lung, and building her strength and stamina for the next phase of treatment – radiation.  In her words, “Not going to lie, it hasn’t been easy,” but she has been getting up every day, taking it head on, and slowly but steadily progressing towards her goals.  It helps to have an incredible family and so many other supporters behind her though.

Family EmBen Tees

Remember – Sunday (March 3rd) is the last day to order your own I Heart EmBen t-shirt!!  For the full instructions on how to place an order, please click here and scroll to the bottom of the post.  Not only are they cute and super soft, but the proceeds go to Emily’s care fund – win win! 🙂

Tsunamis of Perspiration & Progress

It has now been two weeks since Emily underwent surgery to remove her right lung.  After a week of recovery at the hotel, Emily and I [Miles] returned to Mount Sinai Hospital for follow up tests and a meeting with her doctors to review progress.

Over the past week, Emily has had gradual improvement each day.  Although Emily has many amazing qualities, patience is not one of them.  She has frequently experienced irritation over her body’s unwillingness to undergo complete recovery overnight (there is a mental beauty in that she equates a 24 hour bug with lung removal surgery).  Consequently, Emily’s insatiable will drives her to work harder each day.  She has improved her daily walks to three miles.  After reading that climbing two flights of stairs represents a large milestone in recovery, she immediately did it that night (this was only eight days post-surgery).  Despite these accomplishments, she has often had a look of frustration.

As we walked through Mount Sinai for her follow up appointments we were able to recall the past two weeks… the pre-surgery waiting area; the ICU; the walkway she rolled down days after surgery; the hospital exit from which she emerged only six days ago.  For the first time, Emily was able to grasp how far she has come in such a short period.  She was proud of her body and could see that she is moving in the right direction.

Emily passed all tests and her doctors were more than pleased with her progress.  The surgery can result in many serious complications, but Emily has had none of them.  A blood clot in her neck dissipated with aspirin; neck spasms have been calmed with hot and cold compresses; and nerve pain from the epidural site has subsided.  Due to disruption of the nervous system on her right side, she is left with two conditions which may improve over time.  One is a slight drooping of her right eyelid (a tad bit seductive in the right lighting).  The other is an occasional bout of heavy sweating on just the left side of her body (a tad bit less seductive in all forms of lighting).  It is quite amazing to see her walk three miles and have sweat completely drench only one side of her shirt.  I find it absolutely fascinating…except for when she sleeps at night and unleashes a tsunami of perspiration for both of us to enjoy.  I am also quite thankful for daily maid service at the hotel.

We will post more details soon on our life here in New Jersey.  For now we just wanted to assure all of you who have been asking that, yes, Emily is still killing it, both physically and mentally.  She spends most of her day either walking, lounging in her recliner watching The Good Wife, or enjoying vivid, painkiller induced dreams (e.g., riding on the back of a motorcycle with Tim Allen as adoring fans watch them perform tricks).

Thank you all for your cards, prayers, and well-wishes.  You can reach us at: Courtyard Marriott, 540 Washington Blvd., Ste. 1002, Jersey City, NJ  07310

Love to all.  Live in the Moment.

Miles & Emily

Lina & Emily

Lina Mendigorin, the highly-efficient and super-sweet Administrative Assistant to Dr. Flores, was responsible for the seamless coordination of Emily’s surgeries at Mt. Sinai. At the post-op appointment, Lina surprised Emily when she told her: “I love your blog!”

Workin’ the Ward with Smiles

Emily knows everyone who works in the Cardio-Thoracic ward of Mount Sinai Hospital.  This is not an exaggeration.   Here is a sample of what it’s like to walk behind her on one of her daily treks:

“Winston, remind me again of the address of your Jamaican restaurant ‘cause I’m going to have Miles pick us up some chicken skewers like we had on our honeymoon.”

“Marissa, my parents bought cupcakes; be sure to get one from the break room before they’re all gone.”

“Marissa, my parents bought cupcakes; be sure to get one from the break room before they’re all gone.”

“Hey, Tri, how many more days until your baby is due?”

“Hey, Tri, how many more days until your baby is due?”

“Mike, thanks again for getting us such a great room; we are loving it!”

“Mike, thanks again for getting us such a great room; we are loving it!”

The Room.  After Miles spent a night on the hard tile floor (to be sure Emily’s pain meds were delivered on time), staff arranged for an extra bed.  It reminded them of their college dorm days, except with a slightly better view.

The Room. After Miles spent a night on the hard tile floor (to be sure Emily’s pain meds were delivered on time), staff arranged for an extra bed. It reminded them of their college dorm days, except with a slightly better view.

Phone number to call in case of EMERGENCY as shown on Emily’s white board:  1-800-NED-4LIFE.

Phone number to call in case of Emergency as shown on Emily’s white board: 1-800-NED-4LIFE.

More dancing in the halls of Mt. Sinai – this is Emily doing the “IV Free” dance after her IV was removed.

More dancing in the halls of Mount Sinai – this is Emily doing the “IV Free” dance after her IV was removed.

Emily is released from the hospital on February 14th, and starts the celebration with a Valentine’s cupcake.

Emily is released from the hospital on February 14th, and starts the celebration with a Valentine’s cupcake.

“We’re never going to see another one like her,” remarks Dr. Flores.   “Or her husband,” says cardiothoracic nurse, Tywana.  “Together they’re sugar.”

“We’re never going to see another one like her,” remarks Dr. Flores.
“Or her husband,” says cardiothoracic nurse, Tywana. “Together they’re sugar.”

Emily and Miles leave Mount Sinai with only great memories.  The cold air takes her breath away, but Emily never stops smiling.

Emily and Miles leave Mount Sinai with only great memories. The cold air takes her breath away, but Emily never stops smiling.

Miles arranges a private van to transport both families across the Hudson River to Jersey City, where Emily will recuperate for several weeks before her next procedure.  As they pulled away from Mt. Sinai and headed down 5th Avenue along Central Park, the first song on the radio sounded, “Lean on Me, when you’re not strong…” Emily asked the driver to turn up the volume as she clutched her Valentine’s hand.  There was not a dry eye in the van.

Miles arranges a private van to transport both families across the Hudson River to Jersey City, where Emily will recuperate for several weeks before her next procedure. As they pulled away from Mount Sinai and headed down 5th Avenue along Central Park, the first song on the radio sounded, “Lean on Me, when you’re not strong…” Emily asked the driver to turn up the volume as she clutched her Valentine’s hand. There was not a dry eye in the van.