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 🙂

Complete Lung Removal: Friday, February 8th

Park View

Central Park view from Emily’s hospital room

Oh the lengths that people will go to for a Central Park view in Manhattan… Ever-creative Emily scored one by signing up for major lung surgery!  One of the reasons Miles and Emily selected Dr. Raja Flores and traveled all the way to New York to live for months away from work and friends and their little dog Ginny, is that Dr. Flores is the international expert in a surgery called extrapleural pneumonectomy (EPP).  In the event that this is what Emily needed, they wanted the best.  Plus, Dr. Flores is one of the kindest human beings to walk the earth.

Pre-Surgery Beauty

Lookin’ cute pre-biopsy

The biopsy this past Monday was to determine if Emily would have part of her lung removed, the entire lung, or the entire lung, lining, and a few extra bonus parts (i.e. the EPP).  When she awoke from the procedure, Dr. Flores was there to deliver the news.  He told Emily he had expected news and exciting news.  The expected news was that that the cancer had indeed covered the entire lung and lining, as previously diagnosed.  The exciting news was that it all appeared to be dead, a remarkable response from her six months of chemotherapy.

Evaluation Test

Emily completing one of her evaluation tests (with flying colors, obviously)

Wasting no time, Dr. Flores scheduled Emily for the big EPP surgery this Friday, February 8th.  Today, Emily will be released from the hospital where she has been recovering from Monday’s procedure.  She will then rest up for a few days at the hotel and be back to bid farewell to any remnants of cancer on Friday.

Friday Prayer Service: No matter your faith background – as long as you believe in Emily – please join us this Friday, February 8th at 6:45PM at St. Monica’s Church located at 725 California Avenue, Santa Monica, CA.

Please email Sarah at sarah@lspgr.com if you will be able to attend so we can plan accordingly.  Feel free to bring friends or family and encourage those who love Emily but do not live in Los Angles to join us in prayer from their homes on Friday evening.

Address Requests:  The Bennett and Taylor families are at the Courtyard Marriott Upper East Side (410 E 92nd St, NY, NY 10128) and will be there through Emily’s stay in the hospital.  Deliveries for Emily during her one-week hospital stay are not recommended until she is admitted and assigned a room.  That information will be posted here on the blog, or you can call 212-241-7383.  Please note that flowers cannot be accepted as they interfere with Emily’s breathing exercises to expand the lucky lung that gets to stay inside her.

Lung Pillow

Made it to NY, Surgery Postponed

Mini celebration on the plane – NYC bound!!

Emily and I [Miles] landed safely into New York this past Wednesday.  Upon arriving at the Courtyard Marriott in the Upper East Side, we were welcomed by Emily’s parents, Shelley and Kevin.

On Thursday, Emily and her family posse walked to Mount Sinai Hospital and met with Dr. Raja Flores.  After numerous phone consultations, it was the first time Emily had met her surgeon in person.  He was simply amazing.  He exuded honesty, confidence, empathy, and inspiration.  When he left the room, Emily beamed and said, “I feel so blessed to have him as my doctor.”

Lots of tests

Over the past two days, Emily has had blood work, an EKG, an ECHO, a lower extremity blood clot test, and multiple meetings with anesthesiologists, surgeons, etc.

However, Dr. Raja Flores did alter the plans slightly.  While reviewing her past scans and tests, he noticed that her pleural lining (the membrane that surrounds the outside of the lung – like the ozone for Earth) was never actually biopsied and tested for cancer.  Rather, it was assumed to be malignant after it illuminated on the PET scan.  In most cases, this is an accurate assumption; however, Emily’s response to the chemotherapy treatment has been simply remarkable.  No cancer is now shown in the pleural lining.  Dr. Flores believes that her response might be too remarkable and perhaps there never was cancer in the lining.  Maybe it was just fluid/inflammation that was lighting up the PET scan; maybe she was over-diagnosed.  So before he opens Emily up and removes her entire right lung and lining with it, he has scheduled a biopsy of the pleural lining.

In all likelihood, the lining will come back positive and we will proceed with the same surgery as planned.  But if the tests come back negative, the surgery will be dramatically reduced to a lobectomy where only one or two lobes of the right lung are removed.

What this means:  

The intense, significant surgery has been postponed a week. 

Emily is scheduled to have a VATS pleural lung biopsy this coming Monday (February 4th) at Mount Sinai at 7am EST.  This is not a typical, easy biopsy, as she will be under anesthesia.  Dr. Flores will insert a camera into her chest and visually inspect the lining of her lung as well as take several samples for testing. Emily will be in the hospital overnight for recovery.  Several days later, once testing is complete, Dr. Raja Flores will finalize the type of surgery required.  That surgery will take place the following Monday, February 11th.

Emily with Phyllis and Michael Epner. Phyllis blazed a path that Emily is excited to follow.

Following our meeting with Dr. Raja Flores, Emily was able to meet a former lung cancer patient, Phyllis Epner, who was traveling from Arizona to meet with Dr. Raja Flores for an annual check-up.  Eight years ago at age 67, Phyllis underwent a complete removal of the right lung, right pleural lining, lymph nodes, and five ribs.  Today, she is vibrant, energetic, and oh yeah, CURED.  Upon meeting Emily, Phyllis hugged her and said, “I know exactly where you are and what you are going through.”  She then grabbed Emily and stared at her in the face and continued, “You are going to beat this and be cured just like me.”  For more than an hour, Phyllis and her husband, Michael, prepared us for the upcoming surgery and provided many tips and suggestions.  As a caretaker, I found it invaluable.  As a patient, Emily found incredible inspiration in her story.

Bennetts in NYCAs for this weekend, Kevin, Shelley, Emily, and I will explore the new neighborhood and rest up for Monday.  Kindly, New York has greeted our visit with a cold front that even has the former Idahoans’ teeth chattering.  Yet, Emily continues to bundle up and bear it for her daily multi-mile walks.

I hope everyone enjoys the Super Bowl.  Here’s to Alicia Keys singing the National Anthem in less than 2 minutes and 15 seconds (I love prop bets) and to some awesome commercials!

Love to all.  Live in the moment.

Miles and Emily

Call off the Search

Great news – Emily and Miles have secured a place to stay in New York while Emily undergoes surgery and radiation!  Many heartfelt thanks to everyone who helped spread the word, made recommendations, or put them in touch with potential leads.  Thanks to your efforts they found a place that meets all of their needs just in the nick of time – Emily and Miles board their flight to New York in two hours!

Travel safe you two 🙂

NY Bound

Tuesday’s Pre-Op Test Results

Brain Scan:  Beautiful!  Nothing in there that shouldn’t be there.  Emily’s dad, Kevin, is convinced this is because her head was solid bone already though 😉

Pulmonary Lung Function:  Now this is a good story…

The technician (who had no idea why Emily was having the test) told her at the conclusion:  “You have great lungs!”  When he asked Emily why she was having the test, she said it was ordered prior to surgery.  The tech responded, “Well, it’s really important to have good lung function for surgery.  And that is not something you need to worry about.  Your lungs will get you through it!”  Emily, God bless her, did not have the heart to tell him that she was having surgery to remove one of them.

Surgery is now scheduled for February 4th or 5th, with a pre-op meeting with Dr. Flores on January 31st…meaning Emily and Miles will be in New York NEXT WEEK!

Many thanks to all who have reached out and given their support in finding a place to stay. Emily and Miles are currently chasing down all leads and will let those who have responded know if further help is needed.  They are so grateful to everyone for stepping up and charging into the search – they couldn’t do this without all of you!

Next Steps

The EmBen rollercoaster has not shut down.  When we last left off, we had just received the mind-blowing news that Emily’s PET scan revealed no cancerous activity in the lymph nodes or pleural lining, and little if any in the tumor site, and her doctor was pushing for an “outside the box” consultation for surgery.

The course of treatment most patients and doctors opt for is maintenance chemo every three weeks to delay reoccurrence, and many have been successful in living cancer-free for up to several years. Eventually, however, cancer can become resistant to maintenance chemo, and while this is currently Emily’s treatment method, she wants to be more aggressive.  Her goal is to be NED (No Evidence of Disease) for life.

Emily’s case is unique in that she is young and healthy (less than 1% of lung cancer patients are under 30), and she has shown remarkable progress with little complication.  Her cancer was staged level IV because it was in the lung’s pleural lining.  It now appears to be gone from there though, and has not shown up anywhere outside of the right lung.  For this reason, Emily’s oncologist, thinking outside the box, believes Emily can be treated as a stage III patient.

While surgeons in Japan are operating on advanced lung cancer, it is anything but routine in the U.S.  Emily and Miles have found their guy though – the Chief of Thoracic Surgery at Mt. Sinai Hospital in New York City.  Dr. Raja Flores has been a consultant to Emily for the past six months.  He has fully supported her treatment to date, and believes this is her window of opportunity for surgery.  The extent of the surgery will not be known until she is on the operating table.  Dr. Flores intends to remove anything that looks suspicious, and while he cannot guarantee the cancer will not return, he wants to give this 28-year old the best shot at a full life.  This means he may remove her entire lung – we won’t know until after the surgery.

Emily’s reaction?  She went straight to the mall and bought a new winter coat for New York.

Next up is a Brain MRI and Pulmonary Function Test today (January 22nd).

Preliminary planning is for a February surgery, followed by four weeks of rest, then six weeks of daily radiation in NYC.  Emily and Miles will then return to LA and resume maintenance chemo to be absolutely certain they eliminate every last cancer cell.

LOOKING FOR: A two bedroom living space in NYC or vicinity from early February through early/mid March, within 30 minutes of the Upper East Side with no stairs.  Does anyone have a lead?

EmTay, Miles, and EmBen on their daily four mile power walk around the Brentwood Country Club (unofficially known as the Lung Loop) in preparation for surgery.

EmTay, Miles, and EmBen on their daily four mile power walk around the Brentwood Country Club (unofficially known as the Lung Loop) in preparation for surgery.