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

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!

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

Bright Spots

After a rough first week, Emily’s body is starting to adjust a little to daily radiation treatments.  Despite feeling extremely sick, nauseous, and completely exhausted 24 hours a day for days on end, the week was not without its bright spots.

Emily’s cousin Erin is a kindergarten teacher and she had her entire class write cards and color pictures to brighten Emily’s day.

Kindergarten Cards

The weekend brought a welcome reprieve from radiation as well as a visit from Miles and Emily’s dear friends Nate and Melanie (you might remember them from their incredibly animated/awesome birthing photo in the EmBen t-shirt collage).  Nate and Mel were able to spend a few hours hanging out and updating the Jersey City transplants on happenings from back home in Los Angeles.

Nate and Mel Visit

And last but not least, Emily’s good college friend Laine stopped by their digs at the Marriott with a dinner feast fit for a family of twenty.  Emily was very excited for the Scrippsie love, and Miles made sure that not a crumb of food went to waste.

Laine Visits

Emily is now in her second week of radiation treatments and not feeling quite so sick.  She even stayed awake long enough inbetween naps to burn through Season Three of “The Good Wife”.  Any recommendations on what show she should tackle once The Good Wife is done?  If so, leave them in a comment below!

Jersey Girl

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

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

The Living Quarters: 

Mariott Living Room

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

Mariott Bedroom

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

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

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

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

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

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

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

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

More Packages

More packages for me?

Champagne and Godiva chocolates, anyone?

Champagne and Godiva chocolates, anyone?

 

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

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

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

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

Mall

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Josh Visits

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

Cousins & EmTay

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

 

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

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

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