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!

*************************************************************************

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! 😀

A Thankful Turkey Day

Thanksgiving DinnerThanksgiving has always been one of Emily’s favorite holidays.  Admittedly, in the past, this was because she loved the food so much.  But this year it was particularly special as it provided an opportunity to relax, spend quality time with family, and be truly grateful for her health.

This same time last year, just a few days before Thanksgiving, Emily was supposed to receive her 5th round of chemotherapy.  While she was hoping to feel well enough for turkey and all the fixin’s, she also worried that the chemotherapy side effects would forever associate the taste of Thanksgiving food with nausea (which has unfortunately been the case with numerous foods).  However, any negative connection was averted when her treatment was delayed due to low platelet counts.  While you may assume that Emily did a jig at the opportunity to now gorge on stuffing and mashed potatoes (well, okay, there was a little jig), the fact that she would go a whole extra week without treatment was nerve-wracking and altogether unwelcome.

The GuysFor the first holiday since her diagnosis, cancer was not the focal point, and Thanksgiving 2013 was about laughter and celebration.  Making it even more special, Emily’s family – Shelley, Kevin, and Chris – flew to Los Angeles to spend the holiday in Emily and Miles’ new home.  The whole family relished the opportunity to breathe easy over Emily’s newfound strength and health, and to be together for copious amount of movies and board games (Chris is quite the Uno player, beware!).

Preparations

As for the meal, Shelley and Emily cooked a marvelous feast, which led to Emily collapsing into her bed by early afternoon for a much-needed siesta.  Meanwhile, the Bennett men intended on spending Thanksgiving lounging on the couch watching football, but once Miles enthusiastically educated them on the rich history of their new neighborhood “Candy Cane Lane”, and the responsibility of each homeowner to decorate in excess of Clark Griswold, they sprung into action.  Soon, lights were dripping off the gutters, wood cutouts of Frosty and Christmas trees lined the yard, and life-size Santa Clause blow-ups were dancing on the rooftop.  Although the electricity bill may now rival the mortgage payment, it’s pretty cool to be able to see your house from space, right? 🙂

Decorating

While it may have seemed like just another holiday visit with family, to Miles and Emily this Thanksgiving was so much more.  It was a reminder to cherish those things that are truly valuable – family, friends, and health.  Emily and Miles are grateful for your incredible support and love over the past year and a half.  You’ve help get them to this point, and for that, they are so very, very thankful.

Happy Holidays

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.

pH Water Donations

pH WaterOne of the main supplements that Emily consumes is large quantities of alkaline water.  The 9.5 pH level is thought to be beneficial to lung cancer patients.  It also provides electrolytes and helps rid her body of the toxic chemo drugs and dead cancer cells.  Since Emily started consuming a gallon daily, her liver function tests, previously at highly elevated levels, have returned to normal!

Under the How Can I Help tab of this website, there is a link to send pH water to Emily via Amazon.  So many of you have contributed water, and it continues to be an incredible way to lend your support.

Emily would love to thank you, but she doesn’t have email addresses for everyone who sends via Amazon (and if you don’t click “gift” she won’t know who the water is from at all).  So when you send her water, please let her know with a message in the Guest Book tab of this website.

Thanks for keeping the water flowing!

A-M-A-Z-I-N-G News

After six months of treatment and seven rounds of chemotherapy, Emily had a PET scan on December 31st.  A PET scan examines the entire body (eyes to thighs) for “activity” uptake on a scale of 1-10, and thereby highlights the location of cancer in the body.  Emily’s last PET scan was in July prior to any treatment.  The test revealed a lung that “lit up like a Christmas tree.”  Emily’s tumor measured in at an 11 (one of the few times extra credit is not a good thing).  Meanwhile, her lymph nodes and pleural lining both had levels of 7.5.

After Emily’s most recent meeting with her oncologist, a new PET scan was ordered in order to examine the possibility of surgery.  The test would need to show cancer only in the tumor though, with no signs of activity in the pleural lining or lymph nodes.

On January 2nd, during Emily’s daily four mile walk (which she has been doing in preparation for potential surgery) we received a phone call from City of Hope.  The results were in – Emily’s pleural lining and lymph nodes both had activity levels of 0.  The tumor now had a level of just 1.9.

PET 7.9.12                PET 12.31.12

What this means:

First, Emily is a complete badass.  She is a real life superhero.  Second, the cancer in the pleural lining and the lymph nodes has been wiped out.  Surgery is now a possibility.  Third, the tumor shows barely any activity; cancer levels are generally above 3.6.  There is great reason to believe that the tumor inside Emily is merely a dead mass of scar tissue.  However, we are trying (although difficult) to maintain a conservative approach and assume there is more cancer to defeat.

In any case, determining the correct next step in treatment is crucial.  Emily will meet with City of Hope’s lung surgeon – Dr. Kim – this Thursday (January 10th).  Following the meeting, Emily’s case will be presented to the thoracic tumor board, made up of City of Hope’s lung oncologists, radiologists, and surgeons.  She is very excited about the interdisciplinary approach, and is anxious to hear the game plan.  Regardless of the next step (surgery, radiation, etc.), and due to the fact that this type of cancer is particularly aggressive and has a high rate of recurrence, Emily will most likely continue to receive maintenance chemo every third week for the foreseeable future.  Although not ideal, Emily fails to see it as a restriction, but as a means to freedom from this cancer.

Emily took time to celebrate this wonderful news with friends and family at Bruhaus – the same location where we held her chemo kick-off party back in July.  It was an amazing night, and we could not believe how much she has been able to accomplish in these past six months.

PET Celebration

Emily and I feel we have nearly climbed to the top of the mountain.  Although there is more to go and there will be a long climb back down, we feel extremely fortunate to be so close to the peak.

Thank you all for your prayers and support.  We truly believe you all are making a difference and have been an integral part in Emily’s battle.

Much love.  Live in the moment.

Emily & Miles

Emotional Week

Update from Miles about the emotional week that he and Emily had…

Thursday, December 13th
After two more rounds of chemotherapy, Emily went in for her third CT scan.  The test is painless and rather quick.

Late that night, we received a phone call from City of Hope with the CT scan results.  The tumor had remained stable.  No areas of metastasis.  Slight shrinkage in the lymph nodes.  After several test results showing tumor reduction, Emily and I were thankful for the lack of growth, but slightly disappointed. There is a sense of uneasiness in that it is unknown how long the tumor will remain stable – Years? Months? Not at all?

Wanting to determine the correct plan of action, we emailed Dr. Raja Flores (Surgeon, Mount Sinai Hospital in New York City) requesting a phone consultation at his earliest convenience.  In addition, we decide to travel to City of Hope the following day in an effort to move the appointment with our oncologist, Dr. Karen Reckamp, from the upcoming Wednesday to Monday.

Friday, December 14th
Amazingly, despite not even being his patient, Dr. Raja Flores responds in the morning and sets up a phone conversation for the early afternoon.  Dr. Flores is ranked in the top 1% of his field by US News and World Report and renowned for his ability to perform difficult surgeries.  But even more, he is compassionate and understanding of Emily’s uniqueness in terms of her youth and strength, and our determination to defy the odds and beat this disease.

While on our drive to City of Hope, we receive his phone call.   He recommends a PET scan to examine the full body for cancer.  He has been pleased by Emily’s response and does not want to perform surgery – especially a radical, invasive one (i.e. her entire lung, nodes, etc.) – unless and/or until it is the right time.  A PET will provide him with a clearer picture of Emily’s options.

At City of Hope, Emily easily changes her appointment to Monday (how great is their service?!)  Then we visit Medical Records to pick up her latest CT reports to send to Emily’s outside team of consulting oncologists and surgeons.  While walking out of the hospital, we read the report and quickly notice a glaring problem: “The tumor has no significant change in dimension and is 28 mm x 16 mm.”

But Emily’s tumor was 20 mm x 15 mm according to the previous scan.  Had Emily’s tumor grown 8 mm?  We sat there in the parking lot, desperately trying to remain calm and focused.  Being a Friday, there was no way we were going to leave and sleep on this for the weekend.  We quickly returned to Medical Records and requested the previous report.  As we expected, it stated the tumor was 20 mm x 15mm.  Frantically, we went to Radiology and requested an explanation.  Five minutes later, we were in the hallway speaking with the actual technician who reviewed Emily’s scan.  The technician explained that she measured the tumor in a different direction and counted the soft tissue.  However, when measured the same way as the previous report, the results were the same.  The tumor was stable.  We were flooded with relief and gratitude.

3rd CT Scan

Monday, December 17th 
Emily and I drive to City of Hope for our appointment.  We have one goal for the meeting: to get a full body PET scan scheduled.  During the drive, we practice our arguments for convincing our team of doctors to order the test.  We want the option of surgery and this is the first step.

We walk into the appointment and meet with Dr. Karen Reckamp.  She informs us that she is pleased with the latest results: The lining is still clear.  The lymph nodes have been reduced to normal size.  The tumor has remained stable and, given Emily’s great response to chemo thus far, might even consist largely of dormant tissue (no active cancer cells).  How do we tell if this is the case?  A PET scan.

Dr. Reckamp requests another round of chemotherapy and a PET scan for early January.  If the cancer has not spread at that point, City of Hope wants to explore the possibilities of either surgery or radiation for as early as late-January or February.

On the way home in the car, calling our families on speakerphone, I relay Dr. Reckamp’s statement from our meeting: “We are thinking outside of the box with you, Emily.  Our goal is to get rid of this so you can put it all behind you.”  One of the few times since her diagnosis, Emily broke down and cried.

Wednesday, December 19th
Emily’s 7th round of chemotherapy was scheduled for Wednesday, with a back-up date set for the day after Christmas if her platelet counts were below 75, as was the case the last two rounds.  But Emily came in strong with a count of 129, a fine showing that she attributes to the recent addition of shark liver oil and melatonin to her regimen.  And although it had been an emotional roller coaster of a week, Emily approached this chemo session with enthusiasm and in high spirits, feeling both motivated and inspired by the visits and conversations with her medical team.

7th Round of Chemo

For the first time, Emily’s therapy did not include the hard-hitting Carboplatin.  As a result, the session was dramatically shorter and the new chemo concoction is expected to be less harsh on her body.  Still, Emily understands that she must remain disciplined and steadfast in her approach in order to beat this.  She will continue to win each moment of each day, never once letting cancer have an opportunity.

Emily and I would like to wish all of you a Happy Holiday season.  For Christmas, there is only one gift I would like: my wife to be healthy and free of cancer.  And although it may be months before I can open that gift, I am just so excited and thankful that I can now see it under the tree.

Love to all.  Live in the Moment,

Emily and Miles

7th Round of Chemo - Thumbs Up!

Deck the Halls of Brentwood

After two weeks of feeling the less-than-ideal chemo spirit, Emily is finally feeling better and embracing the vastly superior holiday spirit.  Last weekend, together with Stephanie Hammond (friend, coordinator of meals, and Brentwood neighbor), Emily hosted a fun, festive, and quite-filling holiday progressive, starting at Emily and Miles’ place and ending at Stephanie and her boyfriend Roger’s new apartment.

In the weeks leading up to the party when Emily was not sleeping or feeling the other ill-effects of chemo, she was combing the internet for cute party ideas.  Being quarantined and confined to the couch in your own apartment isn’t nearly as bad when there 1,687,149,987,245,831 holiday pins on Pinterest to search through and pass the time.  Emily enlisted the help of some cooking-savvy elf-friends, and the final result?  Party guests were treated to a whole selection of incredible snacks including brie baked in puff pastry topped with cranberries, honey, and toasted nuts, pomegranate jello treats shaped like gingerbread men, single serving spinach artichoke dip served in edible wonton cups, and good old pizza (made to look like candy canes, of course).

Holiday Food

Once every last plate in Emily’s apartment had been licked clean, the group made its way down “Candy Cane Lane” to Stephanie and Roger’s place.  The short walk was nicknamed Candy Cane Lane because the entire street was marked with giant candy canes so no one would get lost en-route to the next destination.  There were also more elf-friends (6+ feet tall basketball player elf-friends) along the route with music and trays of holiday-themed refreshments should anyone feel parched on the 3 block journey.

Co-hostess-with-the-mostest Stephanie also logged some serious hours selecting the best of the best holiday desserts so guests were again left with those hurt-so-good busting-at-the-seams eyes-are-bigger-than-stomach feelings.  Perhaps the highlight of the second party stop was the homemade photo booth complete with festive holiday props.  Who knew that an empty picture frame and oversize glasses could be so much fun?!

All in all it was a wonderful night to celebrate both the holiday season and Emily’s triumph over six rounds of intense chemotherapy.  Still not convinced?  We’ve got the photos to prove it! 🙂

Holiday Photo Booth

Holiday Party

Kara Comes to Town!

This past weekend Emily’s bestie from Idaho (and newlywed!), Kara, came down for a visit and to help Emily prepare for the holiday party that she was co-hosting (more details on the party coming soon – stay tuned!).  It was a wonderful weekend full of super fun bonding time.  Kara also brought Emily the sweetest gift to help her stay comfortable during chemotherapy.  Kara found fabric that has “HOPE” and other positive words all over it and had it made into a pillow for Emily.  It is antimicrobial fabric that can be wiped down with a light bleach solution and it has an antibacterial pillow inside of it too.  Not only will it be comfy for Emily and remind her of dear Kara, but it is clean and sanitary too – win, win, win!

Kara Visits

The Effects of Chemotherapy

There have been a lot questions about the effects of Emily’s chemotherapy, along the lines of: How is she REALLY doing?  She looks different, but what is it?  Is she as happy as she looks in her photos?

Following each of Emily’s chemotherapy treatments, I [Michele Taylor, MIL] spend 7-10 days in LA with Emily and Miles to help care for my daughter-in-law.  As her nurse, maid, cook, and couch companion, I am able to witness firsthand Emily’s fight and, in particular, the effects of the chemotherapy.  As such, I offered to address some of these effects to help everyone understand what Emily is going through.

Nausea

The greatest challenge from chemotherapy has been the management of nausea.  There are several medications – one injected, one swallowed, and one that dissolves on the tongue – all of which last different lengths of time and carry different side effects.  Managing the meds and the food preparation is a delicate balancing act.  It goes beyond making her comfortable.  Too much medication can lead to severe agitation and discomfort; while too little can lead to nausea and vomiting.  And just when you think you have it down, and make a plan for the next round, circumstances change.  For example, we initially prepared all of Emily’s favorite foods during chemotherapy week to entice her to eat, but then those foods became intolerable as her brain associated them with nausea.  Later, we had to eliminate all cooking in the house as she became highly sensitive to odors.  With the completion of the sixth round, treatment will no longer include carboplatin, the chemotherapy associated with the harshest side effects, and we are hopeful the new “chemo-lite” cocktail will produce less nausea.

Appearance

Overall, the chemotherapy’s effects on Emily’s outward appearance have been minimal, particularly in light of what others have experienced. 

Hair

No, this is not a magazine photo shoot for Dom Perignon, just Emily dancing at a New Orleans wedding two months before her diagnosis.

Emily has always had very thick hair. When told that chemotherapy would cause her hair to thin, Emily’s reaction had a positive spin:  “Cool, I pay a boatload right now to have it professionally thinned and now my health insurance will cover it!”  And while Emily’s hair has thinned progressively with each treatment, I can attest as the person who operates the Swiffer each morning that their dog Ginny is well in the lead when it comes to shedding.

Nails

No more salon mani/pedis on the schedule as Emily can’t risk any cuts.  One of her meds reduces the blood’s ability to coagulate; the others reduce white blood cells to fight off infections.  So she either paints her own nails, or uses the new peel-on polish strips (when she feels a strong desire, as she did last week, for black plaid fingertips).

Skin

Keep this girl out of the snow – she might disappear!!

Primary symptoms have been a combination of acne (from steroids) and dry skin (from chemotherapy), and internal bruising under the eyes (from meds).  She is also paler, which is associated with chemotherapy and not being allowed out in the sun.  And, in her defense, we frequently shoot photos of her early in the morning when she is without make-up, even though she says, “No, don’t take a picture of me now! [in the same breath], ok wait, [smiles], go ahead.”

Weight

Prior to the start of chemotherapy, Rich cooked up a storm and Emily put on some pounds in preparation for treatment.  Printed material from the hospital instructed her to eat anything that sounded appealing.  Emily has always been thin, with a robust metabolism, and we were concerned that chemotherapy would lead to massive weight loss and deplete her nutritionally.  Maintaining or gaining weight was a top priority.  Six rounds down and Emily is now a good 15 pounds above her normal weight, and at times is surprised by her own reflection in the mirror.

After her last doctor’s visit, she called to enthusiastically report:  “The weight gain is from water retention and it’s a side effect of the chemotherapy!  I can expect to gain 1-2 pounds every round, no matter how much I exercise or eat.  So, I don’t know what you had planned for tonight, but I’m thinking maybe burgers and sweet potato fries!?!”

Chemo Fog

Michele gives Emily a coconut oil scalp massage and hair treatment to nurture hair follicles damaged by chemo.

Emily will be the first to tell you that memory has never been her strongest asset, but now she has “chemo fog,” a cognitive dysfunction associated with short term memory loss and difficulty concentrating.  When we asked if she’d like to play a board game a few days after treatment, Emily responded, “No, that involves thinking . . . and thinking hurts my brain right now.”

Does she find it frustrating?  Not in the least; she has embraced it with relish.  Making no move to find anything on her own, she plants herself in the center of the room and asks, “Where is my make-up bag?  Has anyone seen my sunglasses?  Has the dog been fed?  I love this!”  Between Emily’s chemo brain and my propensity for reorganizing drawers and closets, I know to answer the phone on the day after returning home: “Hi, Em, what are you looking for?”  And then I get to hear her laugh.

Strength

It is natural to look at photos of Emily playing in the championship softball game six-days post chemotherapy and conclude that she is experiencing few debilitating side effects.  What you don’t see is her struggling to catch her breath as she circles the bases over the course of the inning, or that she collapsed and slept for 14 hours once she got home.  Still, there was never a question whether she would play, because she is a true competitor, and determined to get the most out of life (and this was, after all, the Championship Game of the F Division of the Santa Monica rec league, so there was a lot on the line).

Lifestyle

With family and friends managing household duties, and an amazingly supportive employer that has arranged part-time disability, Emily has been incredibly fortunate to get all the rest she needs to allow her body to both fight the disease and recover from chemotherapy rounds.  She is in bed by 9:30 PM and sleeps 10-12 hours, then adds twice-daily meditation sessions, and frequent naps.

Good luck keeping this girl away from the mall

The three week chemotherapy cycle consists of a “sick week” similar to having a nasty flu with nausea, fatigue, and restlessness, a “risky at-home week” where she must avoid large public settings and air travel when white blood cell counts are low, and a “normal week” where Emily returns to work and is able to socialize and get back out into the world, although if Miles had his way she’d never set foot in a shopping mall again (yeah, good luck with that one, Miles).

The chemotherapy schedule has been friendly in that Emily has been able to make quite a few of the big dates on the calendar, although she had to forgo her 10-year high school reunion, a cousin’s NYC wedding, and our family vacation to Costa Rica.  On the other hand, her lung cancer has resulted in some very fun, memorable events, like the 5k lung run, the college volleyball game in her honor, and a fundraising gala in San Francisco.

So many lives have been altered since the news in late June that Emily was battling advanced lung cancer.  But what hasn’t changed, and what never falters, is Emily’s spirit, Emily’s smile, and Emily’s determination.  It’s no act.  Emily chooses to be a positive force in the world and I have never witnessed anything to the contrary.  It is what makes her so special and what makes us believe she will beat this.

(Love you, EmBen 🙂 )