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 🙂 )

Emily Gives Thanks

As a way to thank Miles for all he has done for her, Emily nominated him for a Caregiver Award called “The Wind Beneath My Wings” Award.  This was her submission.  Enjoy.

My husband, Miles Taylor, is the love of my life, the Wind Beneath My Wings, and the embodiment of selfless love.

Although, up until a few months ago, before my diagnosis, I would have more likely described him as a goofy, over-sized, overactive kid.  Not to sell him short – he has a graduate degree, a good job, and possesses a deep moral code – but the guy can, and does, make a game out of anything.

It’s not like I didn’t know what I was getting into. I met him my junior year of college when he showed up as the new ball boy for my volleyball team, and let’s just say this was not the official attire.

To give you a sense of who Miles is, I have to go back to a few of the highlights.  His wedding proposal lasted four hours.  It was a scavenger hunt that led me to clues all over the city of Los Angeles and finally back to our college campus, all along the way revisiting spots that held special memories in our blossoming relationship.

Of course I said, “YES!” This is just us being excited about the idea of getting married (and yes, that’s a bed sheet I’m wearing).

The wedding itself, held on the 4th of July two years ago, was a four day affair. Miles planned the three days of “pre-game” activities for our 200 out-of-town guests, renting a park, a gym, a disco, and an entire bowling alley.  He organized days with river rafting, softball, volleyball, and basketball, and nights with pub crawls, casino games, and dancing.  And of course there were prizes galore.

I took charge of the actual wedding, making sure it was a tasteful event.  All I asked Miles to do was arrange transportation for the guests from the State Capital gardens to the reception.  I had imagined a large, comfortable, air-conditioned charter bus for the 100+ degree Sacramento heat.  This is what he delivered.

Holidays with Miles are incredible affairs: always costumes, always a party.  He starts decorating earlier than Clark Griswold in National Lampoon’s Christmas Vacation.  Unexpectedly, I will arrive home from work and see our apartment ablaze in Halloween or Christmas lights and know that the local 99¢ Store has been depleted and its contents are now in my house.

And then there are all of his own annual traditions which bring together family and friends and involve elaborate details and homemade games like Thanksgiving jeopardy, family betting on the Oscars, Ryder Cup, Life Domination, every Steelers game, and the Rose Bowl, where we rent an RV and live in the stadium parking lot pretending to be from one of the teams.  Miles finds a school yearbook and assigns us all names and personalities, and then provides shirts and flags and we all end up talking like we’re from Wisconsin. But like any overactive boy, Miles can be a lot of work.  Not a week goes by that he doesn’t lose his keys, or his phone, or his credit cards.  He never wants to go to sleep at a decent hour, and he has yet to locate the laundry room.  So amidst all the fun, I had a small nagging concern about Miles as, well, as a father.  Sure, all kids love him, but would he remember to pick them up at soccer practice, or be able to discipline them?  My mother-in-law suggested starting him out on a dog.  So I got him Ginny for his birthday.

Cute, huh?  Well, that idea backfired.  Miles taught her to howl, growl, dance, and fight, leaving me with two wild creatures running loose in the apartment.

And then I got cancer.  And my husband grew up overnight.

Miles is, without a doubt, the Ultimate Caregiver.  He calls this “the biggest game of our lives,” and has assumed all responsibilities so that I can focus exclusively on beating my deadly opponent.

  • Around the house, he won’t let me lift a finger.  In fact, I first knew I was really sick when he starting loading and unloading the dishwasher, because I wasn’t aware that he knew we had one.
  • He has added cooking and paying the bills to his household chores.  And because I have difficulty breathing around pollen, he makes paper flowers for my breakfast tray.
  • During chemo week, he makes homemade checklists with little boxes to track my medicines, holds my hair back when I hug the toilet bowl, and sets the alarm throughout the night to feed me Saltines so I don’t wake up feeling queasy in the morning.
  • To keep the house clean, he has adopted a “no shoes in the house” policy, opens all mail and deliveries to keep my hands clean, and forces Ginny into the shower with him after her walks.  The poor dog’s skin is so dried out that she can’t stop scratching from being so clean!
  • Miles used to work from bed in the early morning while tuned into ESPN, but now he sneaks out at dawn because he knows that, as much as I love him, I sleep better when I am alone and can stretch out for a few more hours of shut-eye.  And because I chill easily, he keeps warm fluffy blankets throughout the house, and covers me in heated blankets when I am at the hospital between procedures.  This is me in the hospital lobby on a bed that Miles made.

Miles is a top-notch Medical Researcher & Communicator.

  • For a guy with “white coat syndrome” who avoids doctors at all costs, this cancer diagnosis has been a challenge for Miles on multiple levels.  But you would never know it to hear him converse with medical professionals after being up all night learning about my disease.  As my diagnosis progressed from what we thought was a carcinoid to lymphoma to finally Stage IV adenocarcinoma, as our vocabulary grew to include acronyms like EGFR, KRAS and ROS1, as the search for care took us to City of Hope, USC, UC Davis, UCSF and Mt. Sinai, I have never had to log on to a medical website.  Miles has done all the research.
  • Miles has a brilliant mind and has been able to weed through so much material.  He carefully selects what will be most helpful to me, summing up what he has learned in simple terms and analogies.  Then he filters out all the scary stuff so I can focus on the positive.
  • Despite being an Econ major/MBA guy, he has embraced alternative medicine as well.  He supplies me with daily doses of alkaline water, grapefruit juice, curcumin, and over-ripe bananas (ugh!) which he hides inside yogurt.  He even hired a doctor in hypnotherapy to guide me through visual meditative exercises.
  • Miles keeps our family and friends informed with written reports, initially as emails and now as blog posts, which are both entertaining and informative.  For example, he uploaded CT scans of my lungs before and after the first two rounds of chemo and used Microsoft Paint to visually explain my wonderful progress!
  • Miles also supported my fervent desire to preserve my fertility, so that within days of my diagnosis we were actively involved in the fertilization process.  This man who passes out at the mere mention of a flu shot, prepared my hormone injections, and while his mother inserted the fluid into my belly, stood at the base of our bed displaying photos of a boy and a girl on his laptop, images he created by morphing our faces. Two weeks later, we were naming our nine precious fertilized embryos.

Miles is the Best Coach ever.  I have played sports all my life and I respond well to coaching.  Miles was also a college athlete and we have often talked about what makes a great coach.  I know Miles’ dream is to coach a high school basketball team, but instead he got me.  And I am the lucky one.

  • For inspiration, he researches and prints stories of survivors.
  • For visualization, he found caps in our spice cabinet demonstrating how big my tumor was when we started (garlic salt), the results after six weeks (balsamic vinegar) and our goal for the next CT scan (vanilla extract).
  • For discipline, he goes “drill sergeant” on me when I need it.  There are no days off.  He keeps tabs that I’m meditating twice a day, drinking massive quantities of alkaline water, and maintaining a “kick-ass” attitude.
  • For support, he climbs into bed next to me each night, no matter how tired he is, and talks to each part of my body.  He tells every limb and every organ how strong it is, he speaks to my white blood cells that are attacking the tumor, he reminds me how strong I am and about my conviction to beat this.  And then he describes our future family and how excited it makes him.  Finally, Miles sings me an Irish lullaby and says that when I feel his touch at night, he is transferring his strength to me so that I will be twice as strong as I fight this.

Our lives have changed drastically in a few short months.  Miles sold his beloved truck for a cleaner, more comfortable vehicle to drive me to treatments.  He no longer plans parties or wears costumes, his golf clubs are gathering dust, and there hasn’t been a peep about Fantasy Football.  Miles is glued to my side and assures me I will never go through any part of this alone.

A few days after my initial biopsy, we received an email from the Chief of Medicine at the City of Hope.  We were thrilled to have made the connection.  She asked who was caring for me – apparently she was looking for the name of my primary physician – but I answered “Miles.”  And I am standing by that answer.

I sometimes miss the fun-loving carefree boy who had never heard of an adenocarcinoma . . . but I am ever so grateful for the man who is now by my side.

I love you, Miles.

-Emily “EmBen” Taylor

By The Numbers

Two years ago on the 4th of July, Emily and Miles had a “destination wedding” in Sacramento. The four joyous days were like summer camp, packed with rafting down the American River, bowling at a rented alley, a wine walk through Midtown, and transportation via school bus.  Their wedding truly reflected their priorities—friends, family, and fun.

When the bride and groom asked Miles’ sister, EmTay, to do a reading during their ceremony, she pointed out the irony: they are not exactly the biggest readers, except for Sports Illustrated and US Weekly (and even more ironic, Sports Illustrated arrives addressed to Emily, and US Weekly is addressed to Miles).  So in lieu of a reading, EmTay compiled a list of stats on these two college athletes as a couple:

September 2003

When Emily and Miles first met at a college party.  Miles was serving as his roommate Josh’s wingman, and thought Emily would be perfect for Josh.

372

# of nights during college, before dating Emily, that Miles fell asleep to the classic How to Lose A Guy in 10 Days.

1

# of dates Emily went on with a Clippers cheerleader.  Yes, she found the only league in the NBA with male cheerleaders.

13

# of months it took for Miles to win Emily over.  His only obstacles:  his roommate, Josh, and that Clippers cheerleader.

1.5

# of months it took Miles to tell Emily that he loved her.

$400

The amount Miles earned working as the Ball Boy for Emily’s volleyball team.

$500

The amount Miles spent on international phone calls when Emily studied abroad in Spain.

93

# of Steelers games Emily has watched since Miles converted her to a hard core fan.

40

# of pounds Miles has gained since they started dating.

95%

% of bugs killed by Emily during their relationship.

5

# of years it took Miles to propose.

50%

% of time the groom fell asleep during wedding planning.

100%

The certainty of this marriage lasting forever.

We’ve recently started studying other statistics – those for lung cancer.  One of the biggest surprises is that lung cancer gets the least amount of research funding dollars and kills the most people (more than breast, prostate, colon, liver, melanoma, and kidney cancers combined).

Here are a few more statistics:

80%

% of lung cancer patients who are non-smokers or haven’t smoked in decades.

450

# of people that die every day from lung cancer in the U.S. (that’s 19 an hour).

4%

The fraction of funding that lung cancer research receives compared to breast cancer.

15%

The overall survival rate for lung cancer, which hasn’t changed in 40 years.

Due to breakthroughs in medical research, the survival rates for almost all other cancers have dramatically improved.  Breast cancer has advanced to a 94% survival rate, and prostate cancer is now at 99%.  However, since lung cancer is still viewed as a smoker’s disease, it doesn’t get the necessary funding.  This won’t change unless there is greater awareness, which is what we are trying to do.  And of course, drive Emily’s survival rate to 100%.

Great Things Come In Small Packages

Mother and Daughter

Emily’s beautiful Mom, Shelley, and dear Dad, Kevin, live in Memphis, Tennessee.  Even though they are 1,800 miles away they still very much a part of the funny / loving / crazy / cute / goofy shenanigans that constitute the dynamic duo of Emily and Miles.  The following excerpt is the story of how Miles almost missed his window of opportunity to ask for Emily’s hand in marriage as told by Shelley.

He had finally decided to pop the question to Emily on their dating anniversary, October 23rd, and so began the planning.  Ideas abounded as to how he would present the question, but he still needed to ask his future in-laws for their permission, being an old-fashioned guy.  In late September and early October 2009, Miles spent countless hours recording and re-recording his request to us for Emily’s hand.  When he finally had exactly what he wanted, including cameo spots by Ginny, he tucked his CD into an envelope and sent it off to his future in-laws.  He alerted us to the arrival of a package from him and that we should open it together.

A few days later we received a package from Miles.  Hmmmmmm, we wondered, what would he be sending us in a Garland Roofing envelope?  Shelley waited anxiously for Kevin to get home from work that day so they could be true to Miles request to open it together.  As we ripped into the envelope, we discovered a variety of metal roofing samples!  Hmmmm again.  What’s he trying to tell us?

Click here to read the rest of Shelley’s story…

It was around October of 2004…

Groom Miles and ‘Best Buddy’ Josh

Josh Zazulia (JZ) was Miles’ best friend in college and served as ‘Best Buddy’ when Emily and Miles tied the knot.  When the devastating news of Emily’s cancer broke he put the accrued airline miles from his work as a consultant to altruistic use by covering the Bennett’s most recent flight to Memphis.  The following excerpt is a JZ original.  It will make you laugh.  It will make you cry.  Read the whole thing, I promise you will not regret it.  It will make your day.

It was around October of 2004.  The Claremont McKenna College annual formal dance, Monte Carlo, was happening at the end of the month.  I was happily taken.  My best friend, Miles, was not.  Not really the Playboy type, Miles didn’t talk about girls much.  I was pretty pumped to have two dates.

Quick little side story for context: Our Junior year in college Miles and I lived in Benson dorm.  For the first time in college we weren’t living together.  To ease the pain, we got singles right next to each other.  So close, yet so far.  Yet, so close.  We were a 5 step, 12 second walk away from each other.  Entire conversations were had from our separate rooms, through open doors.  We treated the setup more like a two bedroom apartment with a common area between us.  Other people living in the dorm didn’t matter.  And, at this point in time, I don’t think I had ever received an email from Miles.  In my life.

It was around October of 2004.  Inbox (1).  Mtaylor06@claremontmckenna.edu has sent jzazulia06@claremontmckenna.edu a message.  I wish I remembered the password to my school account; boy would I love to read this email again.  Instead, I must paraphrase…

Click here to read on, you will be so happy you did…