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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Three Days…

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

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

Three Days

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

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

We Heart EmBen!

While all of Emily and Miles’ close friends were so thankful that the two of them found an incredible surgeon who is committed to treating Emily progressively and as the unique patient that she is, we were also so very sad that this meant losing them to The Big Apple for a couple of months.  Even though they are thousands of miles away, not a day goes by when we aren’t all thinking about the two of them and sending our love and support from afar.

This got some of Emily’s friends thinking – how can we show her just how much we care?  As it turns out, this is not an easy problem to solve.  We decided to start small, and then help the spirit spread (more on that later…).

I Heart NY

Many people who leave New York come away with some sort of souvenir with this iconic graphic on it.  Well what happens when someone you care so much about goes to New York for lung surgery?  You design an awesome shirt that perfectly transforms the traditional logo into a more personal sign of love and support and send it to New York, of course!

Team EmBen 1

I Heart EmBen shirts have been secretly spreading amongst Emily and Miles’ friends and are now also en route to the two of them and their families.

Team EmBen 2

Since we all know how big Emily and Miles are on team spirit, we’d like to spread the love and outfit as many people as possible.  Added bonus – all profits from the sale go to Emily’s care fund!

So do you want to get in on this and have your own awesome t-shirt to show your support for Emily?  Yes!  Awesome, that’s what we like to hear 🙂

These are the next steps:

  • Email t-shirt project coordinator extraordinaire Laura Verbal  with 1) the number of shirts and sizes that you would like to order and 2) the mailing address where the shirts should be sent.  The shirt is a premium heather grey color, soft cotton/polyester/jersey blend, crew neck style (men’s sample here, women’s sample here), with cream colored print.  Kid’s sizes are available too.  The shirts run a little snug so if you are between sizes it’s better to order up.  You must get your order and payment to Laura by Sunday, March, 3rd at 10PM so she can place the group order.  That is one week from now – don’t forget!!
  • Send payment (# of shirts ordered x $22 each = total payment owed) to Laura’s PayPal account.  If Laura does not receive your payment, she cannot order your shirt so please make sure that it arrives before March 3rd!
  • The shirts are made to order and will take approximately two weeks.  Keep an eye on your mailbox around mid-March for your package to arrive!
  • Once your shirt arrives, take a picture of you/friends/family/pets/dolls/etc doing something fun with the shirt on and email it to Webmaster Annie.  She will compile the photos and post to the blog for Emily, Miles, and all of their friends and followers to enjoy

To Emily and Miles – we hope you like this t-shirt surprise as much as we like the two of you!

XOXO,
The Gang

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.

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

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