Open Letter to Dr. Oz

The Dr. Oz Show is a daytime talk show hosted by surgeon Mehmet Oz where a variety of different health-related topics are discussed.  On November 29th an episode aired regarding four symptoms that people frequently worry about.  One of the top symptoms was a persistent cough, and Dr Oz assured his young female guest that because she had never smoked he did not think she should worry about having lung cancer.  Does this story ring any bells?  Raise any red flags??  A persistent, dry cough was Emily’s ONLY external symptom of lung cancer.

Emily has written Dr Oz in hopes that he will correct this misinformation that was shared with millions of viewers.  She is just one voice though.  Can you spare one minute to contact Dr Oz and the show’s producers?  We want to request that they dedicate a show to the very real and developing epidemic of lung cancer among young, non-smoking adults.  Do you know someone who works at the Dr Oz show, or perhaps the friend of a friend?  Please make sure that this letter from Emily gets to their inbox!

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Emily & Miles Taylor

Dear Dr. Oz –

My name is Emily Bennett Taylor and at age 28 I was diagnosed with Stage IV non-smokers lung cancer.  Bonnie J. Addario of the Bonnie J. Addario Lung Cancer Foundation mentioned me in a letter to you in December, regarding your segment on Friday, November 29th titled “The Alarmist Guide To The Symptoms You Worry About Most.”

The only symptom I had was a nagging, persistent, dry cough.

If I had watched your show a year and a half ago, before my diagnosis, I would probably be dead.

VballIn June 2012 I was 28 years old and about to celebrate my 2nd wedding anniversary with my husband. We met in college where we were both athletes, and continued to lead a healthy, active lifestyle together after graduation.  I have never smoked a cigarette in my life.  So you can imagine my surprise when I got a chest x-ray for a persistent cough that I thought must be allergies, and my pulmonologist immediately ordered a CT scan after seeing the results.  And then a biopsy.  And then told me I had advanced lung cancer.

I went through eight rounds of chemotherapy, and was lucky enough (and I do mean lucky) to have surgery become an option.  But it wasn’t easy – on February 8th, 2013, my entire right lung was removed in an Extrapleural Pneumonectomy procedure.  A month later, I began 28 rounds of high-dose radiation to my entire right lung cavity.  I battled radiation nausea and fatigue for months, could barely walk, and now go to physical therapy to try to regain the strength that withered away during those months. Today, eleven months after surgery, I am extremely grateful – and again, lucky – to be considered NED (No Evidence of Disease), but not one single day has been easy.5k12w-3301

So you see, Dr. Oz, my life and my struggle are evidence that the face of lung cancer is not what society thinks it is.  We need to raise public awareness.  Sadly, lung cancer is essentially a death sentence at a mere 15% survival rate; a large reason for this is the lack of early detection due to misconceptions about who is at risk.  Misconceptions that were, unfortunately, propagated by your show.

The fact is that lung cancer is the #1 cancer killer in America.  It kills more than breast, colon, and prostate cancers combined.  Yet, due to the stigma, it is the ignored cancer and is drastically under-funded and consequently under-researched.  More and more non-smokers like me are being diagnosed, and we need to know why and how to treat these people.

BJALCF13-6742

For most new diagnoses, as I’ve learned the hard way, it has nothing to do with cigarette smoking. That is why the Bonnie J. Addario Lung Cancer Foundation is working to find a genetic marker in lung cancer, much like the BRAC gene for breast cancer.  Personally, my new dedication in life is to raise lung cancer awareness and funds so that we can find a genetic component and attack the root cause of lung cancer.

As a doctor, I know your main objective is to help people and save lives. That is why I would love the opportunity to help you correct the dangerous misinformation that was provided in your November 29th show.  Together we can save a life like mine.  I’ve included my website so that you can read up on my story; it was just voted into the “Top 9 Lung Cancer Blogs of 2013” on Healthline.com.  I have been able to connect with and help so many fellow patients, but I would love to continue that work through your show.

Much love.  Live in the moment.

Emily “EmBen” Taylor
embenkickscancer.wordpress.com

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! 😀

Rest & Recovery

After nearly three months in New York which included major surgery and a daily battle with nausea (radiation side effect) for six straight weeks, Emily was thrilled to board a plane and return home.  However, returning to Los Angeles did not mark the end of recovery.  Rather, as we have learned over the past month, it’s going to be a long road.

Doctors told Emily she would experience fatigue as her body recovered from radiation, but nothing could actually prepare her for the extreme exhaustion.  For the first few weeks home, simple activities like walking from the living room to the kitchen or even moving from one couch cushion to another resulted in five minutes of catching her breath.  Although frustration had a few appearances, Emily managed to remain optimistic and set her sights on recuperation.

Even though she still has a way to go, Emily is starting to regain her energy.  She has provided her body with ample rest – 13 hours of sleep at night is the norm, and while awake she often spends a majority of her time on the couch following through on DVD and TV show recommendations.  She is increasing her lung capacity and activity levels by walking Ginny daily.  Needless to say, Ginny is the most excited of all that they have made it up to four blocks now.  We are encouraged that these effects are radiation related, and not due to the removal of her lung.  She was walking two to three miles at a time in the period between surgery and radiation, so we are confident she’ll be able to get back to that point and beyond.

Celebrating Recovery

A nice night out to celebrate NED and continued recovery progress.

Many of you have asked about the current treatment plan.  At the moment, no traditional treatments are being administered.  Once Emily became NED via surgery and radiation, it was determined that maintenance chemotherapy would not be needed.  We have researched many supplements that have benefits for lung cancer patients (benefits to NK cells, immune system, etc.), so we’ve been playing around with which ones Emily can tolerate, and she is now up to about 20 pills a day.

Although the past month has not been incredibly easy, Emily can state without a doubt that it is all worth it.  This past Tuesday, she had her first CT scan since before her surgery.  The results came back clear.  She is cancer free and NED.   Upon hearing the news, I ran around the house whooping and screaming in celebration.  However, Emily simply remained lying on the couch with a big smile and finally said, “That’s great to hear.  I knew it.”  She may be still regaining her strength physically, but mentally there is no one stronger than Emily.

Next Up:  The next CT scan will be in three months.

Much love.  Live in the moment.

Miles & Emily

LIVESTRONG

EmTay  LivestrongLast month, Miles’ sister EmTay was in Austin, Texas for the South by Southwest (SXSW) Conference and had the opportunity to attend an event at the LIVESTRONG headquarters.  EmBen’s care team is a huge fan of the LIVESTRONG website.  It has been their go-to resource for remedies to lessen the debilitating side effects of chemo, surgery, and radiation, and for investigating alternative therapies and supplements. The website presents information clearly and succinctly, based on research and scientific evidence, and helps patients and caregivers understand what is effective and what should be avoided.  The website will be an integral part of the next step in designing a program to rebuild EmBen’s strength and immune system to keep her healthy.

While at SXSW, EmTay ran into her friend Ronen who mentioned he had been following EmBen’s story.  According to EmTay, the only thing bigger than Ronen’s heart is his personal network.  He immediately started contacting his connections at LIVESTRONG and they were as touched by EmBen’s fight as we all have been.

Within days, LIVESTRONG IT Coordinator Kammie Russel put together a care package and the staff wrote inspirational messages to Emily on a large yellow poster.  It was quite a hit!

EmBen Livestrong

Idaho State High School Hurdles Champion and Scripps College All-Conference Volleyball Player, Emily “EmBen” Taylor, was pumped by the LIVESTRONG delivery that arrived  while she was recovering from surgery that removed her right lung and simultaneously undergoing high dose radiation treatments for stage IV lung cancer.

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

Eggs for Emily

Looks like the Easter Bunny has officially joined Team EmBen!

EmBen Easter Eggs

Here’s hoping that you and yours had an eggcellent holiday together.  Tomorrow marks the start of the final ten-day countdown of Emily’s radiation treatments.  While radiation may be taking its toll, unlike the eggs, Emily will never be beaten.  She never fails to look on the sunny-side of things.  That’s all for now, yolks.  Stay tuned for a real update coming soon.

Annie and EmTay's Easter Eggs

Many thanks to EmTay for the 3,287 puns that she supplied for this post (there were too many to include them all!).  She is a good egg, just like her sister 🙂

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!

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.