Emily’s Easter

Sat night

Nearly two dozen family members gathered in Jersey City to celebrate Easter with Emily.  The weekend events kicked off with Friday’s celebration of Michele and Rich’s 33rd wedding anniversary.  On Saturday, Aunt Grace and Uncle Jim reserved the neighborhood Italian restaurant.

During the afternoons, the ladies caught up on family gossip, while Miles and the guys shot hoops at the neighborhood park.

During the afternoons, the ladies caught up on family gossip, while Miles and the guys shot hoops at the neighborhood park.

Easter Day:  Emily looked like a J Crew model in her Easter outfit, a gift from sister EmTay.

Easter Day: Emily looked like a J Crew model in her Easter outfit, a gift from sister EmTay.

Decorating cupcakes and coloring eggs.

Decorating cupcakes and coloring eggs.

Enjoying the kids

Enjoying the kids.

All of the Colarusso cousins were on hand, including John, Brian, and Catherine from Pittsburgh and David and Annie from Tulane in New Orleans.

All of the Colarusso cousins were on hand, including John, Brian, and Catherine from Pittsburgh and David and Annie from Tulane in New Orleans.

Aunt Colleen made TEAM NED shirts, and this special one just for Emily:  Two Lungs?  So Last Year!

Aunt Colleen made TEAM NED shirts, and this special one just for Emily: Two Lungs? So Last Year!

Catherine, a flower girl at Emily and Miles’ wedding, made Emily a bouquet of non-pollinating roses from tissue, wire, and scotch tape.

Catherine, a flower girl at Emily and Miles’ wedding, made Emily a bouquet of non-pollinating roses from tissue, wire, and scotch tape.

Emily shot this photo while laughing that Miles appeared freakishly large among the rest of his family members and in a room of normal-sized furniture.

Emily shot this photo while laughing that Miles appeared freakishly large among the rest of his family members and in a room of normal-sized furniture.

Cousin Grenye, a 4th year med student at NYU, just received the wonderful news that she has been accepted to her #1 choice for her medical residency -- Mt. Sinai Hospital.  So Gren will be there when Emily returns to Mt. Sinai for her one-year scans with Dr. Flores to hear she is still NED!

Cousin Grenye, a 4th year med student at NYU, just received the wonderful news that she has been accepted to her #1 choice for her medical residency — Mt. Sinai Hospital.  So Gren will be there when Emily returns to Mt. Sinai for her one-year scans with Dr. Flores to hear she is still NED!

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.

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

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.

Big Things in the Big Apple

Most visitors to NYC would try to squeeze in a visit to the Empire State Building or a Broadway play – not these two!  On a short trip to NYC for a family wedding, Michele (mother-in-law) and EmTay (sister-in-law) traveled uptown to Mount Sinai in an attempt to meet with one of the most progressive Thoracic Surgeons in the world.  Dr. Raja Flores took the time to review Emily’s case.  He was brilliant and charming and may be the answer to our prayers.

EmTay and Dr. Raja Flores

EmTay and Michele – All smiles in Central Park after a great visit with Dr Flores