Year In Review

What a difference a year can make!  Thank you to all of our family, friends, and supporters who have been a part of this journey. To those who come to this site in need of inspiration, this look back at 2013 is for you.  

Much love.  Live in the Moment.   

Emily & Miles

TREATMENT

January 2013

Six months post-diagnosis, Emily completed seven rounds of chemotherapy.  The triple-drug cocktail of Carboplatin, Alimta, and Avastin was toxic but effective, making Emily eligible for surgery.  Miles’ employer, The Garland Company, generously donated to help fund the Young Lung Study, and produced this heartfelt and uplifting video of Emily’s path to surgery.

February 2013

Emily and Miles temporarily relocated to New York City for an innovative, post-chemo treatment of Stage IV Adenocarcinoma at Mt. Sinai Hospital.  On February 8th, Emily successfully underwent an extra-pleural pneumonectomy, removing her entire right lung, pleura, seven nodes, half of her diaphragm, and the pericardial sac surrounding her heart. Two days post-op, Emily was caught dancing in the halls of the hospital.

Chief of Thoracic Surgery, Dr. Raja Flores, shared the great news with Emily – he saw no evidence of disease following her procedure.  She was NED!  Emily told Miles it was the happiest day of her life.

NED with Miles

Emily with Dr. Flores

March – April 2013

After three weeks of recovery, Emily embarked on the final stage of treatment: 28 rounds of high-dose radiation to the empty lung cavity.  It proved to be the most arduous part of the battle, but necessary to knock out any microscopic cancer cells and prevent recurrence.

Victory

MOVING FORWARD

September 2013

Six months and two NED scans later, Emily and Miles confidently moved forward in life with the purchase of their first home – a house with plenty of rooms and a large yard for a big family.

Driving to First House

Driving into the neighborhood on move-in day.

Miles carries Emily over the threshold, a dream come true.

Miles carries Emily over the threshold, a dream come true.

PAYING IT FORWARD

While Emily continued to work diligently at her recovery and continued health – sleep, physical therapy, aerobic and breathing exercises, and an array of integrative therapies – she also made an important, life-altering career shift to undertake an active role in lung cancer advocacy.

First SpeechFirst Speech

Emily sought donations to produce and distribute the most comprehensive patient handbook ever published for newly diagnosed lung cancer patients (free download HERE)

First Television Appearance

Next up was a polished and poignant appearance on the nationally televised Steve Harvey Talk Show to promote the Bonnie J. Addario Lung Cancer Foundation, awareness of the disease, and to help put a new face on lung cancer and replace the current stigma.

Steve Harvey

First Interview in National Magazine

Emily was highlighted in this article published in The Atlantic in November, ““Why Do Healthy Non-Smokers Get Lung Cancer?”

Speech 1First Performance as a Couple

Emily and Miles took to the stage at the Lung Cancer Foundation’s annual Gala to promote a new study designed to identify a genetic link in lung cancer.  Their heartrending story raised hundreds of thousands of dollars for the cause.

The couple was also featured in this 2013 Gala video highlighting patient success stories.

LOOKING AHEAD

Emily will start the New Year off with a bang when she joins Bonnie Addario as a program participant at an International Conference, “Molecular Origins of Lung Cancer” in San Diego.  Stay tuned, and Happy New Year! 😀

A Spook-tacular Halloween

Ned and Dr Flores

“NED” Flanders and Dr. Raja Flores

Miles and Emily recently moved into their first house in a neighborhood known locally as “Candy Cane Lane”.  It’s an LA destination for Christmas decorations, and the streets attract thousands of visitors around the holidays.  In other words, a neighborhood right up their alley!  Their new neighbors alerted them that they should expect big crowds on Halloween as well so Emily made sure the house was well-stocked with candy.

In celebration of Emily’s NED status (No Evidence of Disease), she dressed as Ned Flanders and Miles dressed as her surgeon, Dr. Raja Flores.  Friends Nate, Melanie, and baby Parker, and Annie and John came over to join in the Halloween festivities (and, unbeknownst at the time, to assist with crowd control).

Sushi and Chef

Sushi Chef Melanie and her favorite sushi creation, Parker

Emily made a game of counting trick-or-treaters, but gave up around 425.  Miles and Nate, meanwhile, had their own game going on with the costumed kiddies.  Each trick-or-treater who came to the house got a piece of candy; however, if they were willing to shoot a basketball on Miles’ new hoop, each kid could earn five extra pieces of candy for a made basket.  Jackpot!!

Mel, Em, and Annie

Melanie, Emily, and Annie distributing candy to the masses

As you can imagine, the line down their driveway was soon over a hundred trick-or-treaters deep.  Oh, and if the kid [teenager] was 16 or older, they got one piece of candy for a bucket.  If they missed, they got a “Go get a job!” from Nate.  Needless to say, the candy ran out long before the massive crowds of trick-or-treaters subsided.  Emily has already made a note to buy more next year..

It was a wonderful first holiday in their new home, and Emily and Miles are looking forward to many more.  Hope you all had a spook-tacular Halloween!

Halloween Crowds

Every superhero, princess, and monster wanted a chance to shoot a basket and score extra candy!

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 🙂

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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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

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.

Vignettes of Recovery

Here is a short photo journal (complete with insider anecdotes!) chronicling the first few days of Emily’s hospital stay following her surgery…

Emily and Miles prepare to say goodbye as she heads into surgery.

Six incredibly tense hours later, Miles hears the news from Dr. Flores that the surgery was a complete success. After hugs, tears, and a few phone calls, he collapses in exhaustion.

Shelley tends to Emily when she arrives in the ICU.

Before she can even speak, Miles asks Emily to show him where there is no more cancer. Emily places her hand on the right side of her chest, and gives the thumbs up.

When Dr. Flores delivers the spectacular news that Emily has No Evidence of Disease (NED), 6’6” Miles tapes a sign that reads: “NED 2/9/2013” to the top of the TV that hangs from the ceiling so Emily can view it as she reclines in her bed. The nursing staff (who are all on the shorter side) crane their heads to read it and contemplate if it just might be there forever.

When Dr. Flores tells a very thirsty Emily (seen here wetting her lips) that she can’t have anything to drink for several days to prevent pneumonia, she smiles sweetly and agrees. Then as soon as he leaves, Emily flags down her nurse and says: “I’ll give you $100 for a glass of water.”

Every hour, Emily works to expand her lung, with Miles coaching her to reach new levels and then raising the bar as soon as she hits it.

Emily moves from the ICU to a private room with dedicated nursing thanks to the generosity of family and friends. And it just happens to include a magical view of Central Park, children sledding, and the NYC skyline.

The Emily Taylor sisters (who recently learned that, in addition to the same name, they also share the same blood type) dine together for EmBen’s first solid meal. The patient was thrilled: “OMG, who knew Jello was this good?! I can’t wait to go home and make a big bowl and eat it all at once. And the consistency is great! I wonder if I can get the hospital’s recipe..”

Family members make this beautiful trek several times a day from the hotel to the hospital.

Meanwhile, Emily laps the hospital halls, guided by her dual oxygen tank rocket boosters.

By the third day, she is walking a half mile, three times a day. To family members: “If you can’t hang with me, go sit on my hospital bed.”

When Miles decides to freshen things up with a newly designed route, the MBA grad miscalculates the distance and Emily ends up walking two miles instead of one. Any downfall? Yes, Miles’ feet were killing him.

Dorky, but loving parents, surprise Emily on her victory lap.

After the epidural is removed, Emily begins experiencing some of the pain she was told to expect. Dr. Flores asked her to describe it. “It feels like a midget is sitting on my chest.” That was not one he’d heard before, but apparently they have a drug for it because the beloved patient, who knows everyone’s name on the floor, will be discharged a day earlier than expected.

Happiness, gratitude, and love all around.

Dr. Flores is THE MAN

Dr. Raja Flores is a world renowned thoracic surgeon and the only doctor who was willing to operate on Emily once it was determined the cancer had moved into the lining of her lung.

On the day after surgery, once Emily was sitting up and more alert, Dr. Flores told her more about her successful operation.  He was pleased with how clean everything looked once the affected body parts were removed, and gave Emily great pride when re-living how difficult it was to cut through her strong lateral muscles (not a surprise to anyone who has seen her throw a football).  He said that because of her strength, they are able to throw a lot of harsh medicine at her, and she will withstand it and recover.  “My part was easy,” he told the family, “now Emily needs to be a warrior.  Don’t worry about the weekend or the blizzard.  I will be here Saturday and Sunday, even if I have to wear snow shoes to get to the hospital.”

Miles exited with Dr. Flores to ask a question he did not want to ask in front of Emily:  Was she NED (medical acronym for No Evidence of Disease)?

Dr. Flores responded that she is in fact now N.E.D., and that he personally wanted to go back in and tell her himself.  It was an emotional moment when he knelt down, put his hand on Emily’s knee, and told her that she had finally achieved her elusive goal: “N.E.D.”

Em and Dr Raja

Before going to sleep that night, with the lights out, Miles sat beside Emily on the bed.  Holding hands, they looked back on the past seven months and the path that led to Dr. Flores.  She sighed, “I love that man.”

As Emily drifted off, she smiled and said, “Miles…This is the best day of my life.”

Em, Miles, and NED

Enjoy this video of Emily rockin’ it on day two post-surgery.  Dr Flores may have taken her lung, but certainly not her attitude 🙂

Lung Day

The best way to describe Emily on “Lung Day” is breathless and beaming.  Now what is Lung Day you might ask?  For starters, it is not the same thing as Surgery Day.  Lung Day was yesterday, February 7th, 2013 – the day before surgery.  Miles and Emily filled the day with activities designed to honor the lung that had served her well for 28 years before bidding it farewell.  How do you honor a lung?  You use it!

No hotel elevator for Emily, only stairs, and no taxi either as they walked to the hospital for the pre-op meeting with Dr. Flores.

Walking to Dr. FloresNext Emily danced in Central Park to “Dog Days Are Over” from the album Lungs.

Dog Days are Over in Central ParkFrom the top of the Empire State Building, Emily shouted for NED!

NED at the Empire StateThen a work out for the lung before dinner.

Working the Lung OutEmily helped with party plans by blowing up the balloons.

Blowing Up Balloons!And blew out 28 candles on her favorite red velvet cake all in one breath.

Blowing Out the CandlesThen Emily entertained everyone with a hilarious dance five minute solo to “I Cry” by Flo Rida.

DancingThe plan is to return to NYC next year for Emily’s one year check-up and do it all again, just as well, but with her newly expanded single lung.

Lung Day