Here is a short photo journal (complete with insider anecdotes!) chronicling the first few days of Emily’s hospital stay following her surgery…
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
Emily has worked for Western Asset for the last 6 years as a senior member of the portfolio compliance team. Early on, coworkers recognized the dedication, consistency, and energy that Emily brought to her work and to her interactions with everyone at the firm. Emily is always the first to take on additional projects, volunteer at philanthropic corporate events, and – to no one’s surprise – she helped take the firm’s softball team to the championships.
As word of her diagnosis has spread to coworkers around the world, the outpouring of support for Emily has been overwhelming. Donations streamed in from individuals around the globe to help with her medical expenses. Colleagues have shared their personal experiences with cancer as encouragement to Emily and offered up connections they have in the medical community that may be able to offer additional opinions or options. Coworkers in Japan sent three-hundred handmade origami cranes or “senbazuru” as a prayer for longevity and happiness. Friends in the UK sent Emily a charm necklace to remind her of the time she spent helping out the compliance team in the London office. Her team in Pasadena put together a gift basket full of treats, magazines, and moisture creams to help with dryness that comes along with chemotherapy. Individuals have sent thoughtful notes and emails, educational and spiritual books and DVDs, and a whole array of sweet treats to boost energy and morale. All of these expressions of support have helped carry Emily and Miles through these first few crucial months of her fight.
Some of Emily’s friends at work ordered several hundred white bracelets (the color of lung cancer awareness) with the encouraging phrase “Fight Like a Girl!” which embodies Emily’s unrelenting conviction to beat this disease. Bracelets can be seen adorning the wrists and computers of coworkers throughout the office, and colleagues continue to send Emily photos of friends and family wearing the white bracelets as a sign of encouragement and support for her fight against cancer.
Emily’s current chemotherapy schedule allows her to work for a few days out of the month. Emily and Miles are so grateful for all of the support, donations, and gifts, but Emily is most appreciative of how normal her interactions are with everyone at work. She loves that expectations of her work remain high, and that she continues to feel challenged. Emily is looking forward to the day when she can focus her “fight” back on her work and not on lung cancer!
For anyone who is interested in sporting his/her own white “Fight like a Girl” bracelet, we will have them at the Dig Deep, Beat Cancer event next Saturday (October 20th). Do you have a funny/interesting/cool/heartwarming photo with the bracelet? Email it to firstname.lastname@example.org and I’ll try and share it on the blog!
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:
|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.|
|# of nights during college, before dating Emily, that Miles fell asleep to the classic How to Lose A Guy in 10 Days.|
|# of dates Emily went on with a Clippers cheerleader. Yes, she found the only league in the NBA with male cheerleaders.|
|# of months it took for Miles to win Emily over. His only obstacles: his roommate, Josh, and that Clippers cheerleader.|
|# of months it took Miles to tell Emily that he loved her.|
|The amount Miles earned working as the Ball Boy for Emily’s volleyball team.|
|The amount Miles spent on international phone calls when Emily studied abroad in Spain.|
|# of Steelers games Emily has watched since Miles converted her to a hard core fan.|
|# of pounds Miles has gained since they started dating.|
|% of bugs killed by Emily during their relationship.|
|# of years it took Miles to propose.|
|% of time the groom fell asleep during wedding planning.|
|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:
|% of lung cancer patients who are non-smokers or haven’t smoked in decades.|
|# of people that die every day from lung cancer in the U.S. (that’s 19 an hour).|
|The fraction of funding that lung cancer research receives compared to breast cancer.|
|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%.
Earlier today, the Bonnie J Addario Lung Cancer Foundation shared Emily’s journey with all of its local followers in the Bay Area. Below is the letter that went out via email – Emily’s story, told in her own words. Enjoy..
Three short months ago, I was leading a happy and healthy life as your average all-American girl. I grew up in Northern Idaho before leaving my small town roots to attend college in Southern California. My athletic abilities and competitive nature earned me a spot on the college volleyball team. While in school, Miles Taylor, a player on the men’s basketball squad, caught my eye, and he’s been by my side ever since.
We married on the 4th of July, found jobs, rented an apartment, adopted a dog, hosted weekly game nights for friends, planned camping trips in the summer, and stayed healthy and active playing recreational volleyball (me), basketball (Miles), and co-ed softball (together). From the beginning, Miles and I were in sync that we wanted a big family and soon began looking for our dream house for the future little ones. In June of this year, we found the perfect place and prepared to make an offer.
That is when the all-American fairytale took an unexpected turn. The very same week, I went to the doctor for a pain behind my shoulder blade and a persistent cough that I thought was the result of allergies. I was diagnosed with asthma, and given an inhaler, but something in my gut told me to ask for a chest x-ray. Four days later, after a CT scan and biopsy, I was diagnosed with Stage IV lung cancer. I was in shock – I am 28 years old, active, and have never smoked.
I jumped on treatment as quickly as possible, but my first concern was to preserve my fertility for the family Miles and I had been so eagerly awaiting. I started fertility treatments immediately, and 10 days later we were lucky enough to freeze nine viable embryos for our future family.
Since my diagnosis, family, friends, colleagues, and teammates have rallied to blanket me and Miles in love and support. They bring meals and water, wash our cars and bathe the dog, clean the apartment, and contribute to an engaging website, created by my friend and former teammate Annie Daun. Miles and I are steadfast in our belief that we will someday have the family of our dreams, and that with your support, together we will all beat lung cancer, big time.
No one should have to go through lung cancer. Not me, not Bonnie, not Jill or Gabby, not the countless other people who have been affected by this disease. But in my opinion, everyone who has been diagnosed should be so lucky to have the amazing resources available at BJALCF and Jill’s Legacy. I have been incredibly fortunate to have their support, along with the care of my amazing doctors at City of Hope, UCSF, UC Davis, and Mt. Sinai.
Please join me for a 5K on September 16th in Golden Gate Park as I team up with the Bonnie J. Addario Lung Cancer Foundation to kick cancer. CLICK HERE to join Team EmBen or make a donation to the cause
Thank you for supporting the cause and finding a CURE.
Much love. Live in the moment.
Emily “EmBen” Taylor
Michele and Rich Taylor are back in Los Angles to help Emily and Miles during Emily’s second round of chemotherapy. The following anecdote is from Friday (8/17) as told by Michele..
The last couple of days have been rough on Emily. The doctors cautioned them to stay on top of the nausea this round, so Miles started the anti-nausea meds earlier and scheduled them around the clock.
As the days progressed, Emily was sleeping 19 hours/day and was not very coherent when she was awake. But we weren’t worried, figuring her body was doing its chemo thing. So when Rich and Miles joined the guys for tennis Thursday night, I had no concerns about staying with her.
I had just started reading when Emily got up the first time and appeared to be having hallucinations. She described them as “bad nightmares while awake” and decided to go back to sleep. An hour later, she was back up, but when she tried sitting upright in a chair, she couldn’t, and headed back to bed. I was pretty sure she was overmedicated and planned to suggest they cut back on the meds.
Now, I grew up on Lassie, and when Lassie came home barking, it was because Timmy had fallen into a well. So I immediately concluded that Emily was in distress and Ginny, being most in tune with her, was alerting me. I spent the next half hour tip-toeing into Emily’s room, checking on her breathing and pulse count. She seemed fine, but Ginny didn’t let up and I started getting worried.
When Miles came home, I told him I thought we were over dosing Emily on the anti-nausea meds. He heard it that Emily had OD’ed while he was gone. He was running around frantic, pulling at his hair, and then hooking her up to a blood pressure machine. When Emily’s stats came back perfectly normal, he yelled, “Why the hell did you think there was something wrong with her?” I told him about Ginny barking at me and running into the hallway over and over again. He said, “Are you kidding me? That’s what she does when her ball rolls under the sofa and she can’t get to it.”
Well, that would have been nice to know…
Weekend Update: The old Emily is back 🙂
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?
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 email@example.com 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…
Prior to Emily (EmBen) starting chemotherapy this week she underwent fertility treatments to preserve her and Miles’ dream of one day having a family. Her mother-in-law (MIL) Michele was there for support every step of the way. While Michele probably never imagined that she would be so intimately involved in the creation of her future grandbabies, the story is something that we can all laugh about.
What you will read below is not the script of a Saturday Night Live skit. It’s the tale of Day 2 of EmBen’s fertility treatment told by Michele.
To set the scene, we need to go back to Day 1. We are all in EmTay’s (sister-in-law) apartment, gathered to celebrate the news that the cancer is confined to the lung and has not spread to the brain and liver. Music is playing, wine is flowing, steaks are being carved and the sun is visibly setting over the Pacific Ocean from the floor-to-ceiling balcony windows. Then seven o’clock rolls around and Miles and EmBen retreat to the tiny bathroom determined to overcome their major needle phobias and inject EmBen with the fertility drug that will bring them the large family they always desired. No such luck. They call for help; EmBen ends up keeled over in pain while Miles lays face down and lifeless on EmTay’s bed.
Realizing that we have another two weeks of this, we all gear up in our individual ways for Day 2. To re-emphasize what we are dealing with here, my pathetic family melts at the mention or sight of a shot, syringe, vaccination, or needle. They physically turn ghost white and disappear into the floor. This includes Miles, Rich, EmTay, and to a lesser extent, EmBen. Personally, I don’t get it; I could shoot up all day long. However, I am determined to make this as comfortable as possible for my daughter-in-law, so I spend the day researching the art of follicle stimulating hormone injections. I learn that this drug can be painful as it enters the body and so I watch hours of YouTube videos of women inserting needles into their “muffin tops” and take notes on tips for reducing the discomfort (all the while wondering how my life evolved into this in two short weeks).
But resigned to do anything for the woman who brings absolute joy to my son, I walk from my daughter to my son’s apartment the next night armed with insider tidbits for executing a less painful injection. We position EmBen up against an array of pillows on her king-sized bed, her mother resting alongside her, holding her hand. I have the needle positioned to insert when Miles decides it’s a Kodak moment and we all plant fake grins on our faces, mine the most bizarre as I am holding the needle Dr. Kevorkian style.
Take 2, I tell EmBen I will be rotating the needle after insertion to disperse the medicine. She tries to pay attention to what I am saying, but is distracted by the music emanating from the laptop computer that Miles is holding at the base of the bed. The screen displays a slideshow of Anne Geddes baby photos, meant to comfort EmBen as she is shot up with hormones. The moment is brief, as Miles starts to pale, EmBen worries that their pricey laptop will come crashing to the ground, and she redirects him to Stage Left, into the bathroom, where he can lean against the sink and continue to safely play his baby video while keeping eye contact with her. Did I mention he also has photos of morphed baby faces that he has created using software that combines both of their faces together?
Take 3: I ask EmBen to grasp her abdominal muscles and apply pressure to the point of pain to supplant the pain of the injected fluid. She grabs hold, her mother is steadfast at her side, I position the needle, and then out of nowhere, Miles starts singing, loudly: “Si-i-lent Night, Ho-ol-ly Night.” We stop, look at him, his face in a grimace, eyes clenched shut in denial, unaware that he has interrupted the process, trying only to block out what is happening so as not to collapse into the shower stall. EmBen screams, “Stop, wait!” (to prevent me from poking her) as she throws her head back in gut-wrenching laughter. EmBen’s Mom smiles good naturedly but had to be wondering if it is wise for her daughter to procreate with this weenie. Personally, I’m impressed because I thought the only song Miles knew the lyrics to was “Happy Birthday.”