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Last April, after learning I was two-years cancer free but unable to carry a child, I posted on this blog to ask if anyone would consider being our surrogate. It was a bold move, and it was hard not to consider that I might be left without a response, and quite embarrassed. Within hours, however, volunteers started responding with heartfelt enthusiasm. Over the next few weeks, more than a dozen of you offered the most unbelievable sacrifice. Still today, we are in awe and overwhelmed with gratitude.
And the surrogate is . . .
Half a lifetime ago, as a high school junior, I won the Idaho State Track Championship. My coaches, Angela and Aaron Stark, were a young, enthusiastic
couple with whom I remained friends well after graduation. They now live in Kentucky, where they are parents to three darling boys; and as luck would have it, both are readers of the blog. When Angela made the decision to help me become a mother, her enthusiasm was irresistible. In true coach fashion, her email subject line read: “Let’s do this!” And so we did!
Angela is Awesome…and fertile :)
Miles and I hit the jackpot with Angela: she is pure love. She has made the cross-country trip to LA multiple times, undergone extensive testing, pumped herself with hormones, and was eager to start anew when the first attempt was unsuccessful.
Angela somehow continues to juggle a new job, parenting, running marathons, and chairing fundraisers, while going out of her way to keep me connected with all she is experiencing. We text, we call, we message, we email. Angela and Aaron were even in our kitchen via FaceTime when we learned the news she was pregnant.
Just a few weeks ago, Miles and I were in Kentucky with them for the first ultrasound where we saw . . .drumroll, please . . . THE TWINS!
It takes a village…
They say it takes a village to raise a child. In our case, it took a village to create one. . . actually, two!
When I was diagnosed with advanced lung cancer in June 2012, news spread rapidly among family and friends. We were incredibly touched by the outpouring of love and support we received. We welcomed meals and doggie care, but felt a fair amount of guilt accepting the checks people were sending.
However, within weeks, the financial impact of a cancer diagnosis became downright scary. We soon learned that care that goes “above and beyond” most often also goes beyond insurance coverage. An initial test for genetic mutations at $7,000 was the eye opener. Clinical trials – often the only place to get access to cutting edge new treatments – seemed likely in my future. Many of these, like immunotherapy, could only be found abroad at that time. Furthermore, Miles and I were determined to preserve our fertility, and were soon embarking on the significant cost of this endeavor.
Today, my medical treatments have exceeded more than $1,000,000. We are fortunate that a vast majority of this has been covered by health insurance, and thanks to your support and donations, Miles and I have been able to fund our fertility treatments.
Thank you from the bottom of our hearts. Your donations allowed us to preserve the 9 embryos that provided me with hope when I needed it most. They gave me the strength to fight through difficult treatments. And today, as two of those embryos are growing, you are giving us the family we have always dreamed of.
Miles and I are overjoyed to share this incredible news with all of you. Thank you for your support, your contributions, and your love. We wouldn’t be here without you. Team EmBen rocks!
Living in the Moment,
Emily & Miles
This past weekend, as a spokesperson for the Addario Lung Cancer Foundation (ALCF), Miles and I traveled to Puerto Rico, where I spoke before the 5TH Annual Puerto Rico Fall Cancer Symposium.
I was standing in for my fellow stage IV young-lung friend, Sandy Jauregui Baza. Sandy, fluent in Spanish, was scheduled to speak but had to bow out as the potential for blood clots from air travel is exacerbated by her cancer drugs. I did my best to make her proud, intertwining English with a little Spanish as I shared my story in an attempt to educate general oncologists and docs to look beyond age, gender and smoking history when treating their patients. Lung Cancer is the number one cancer killer of both men and women of all ages. All physicians need to be alert to its symptoms, aggressive in ordering both tests and referrals, and advise their young patients on fertility preservation.
I’m so grateful my message and speech were well received, and there was a lively Q&A afterward. I met some wonderful doctors, researchers and nurses, and hopefully changed their perspective on who can get lung cancer. And then we got to enjoy this….
Many thanks to Oprah and the O Magazine staff for helping raise awareness of the growing prevalence of lung cancer among young never-smokers like myself, both through their informative article in last month’s issue and my follow-up letter in their November 2015 publication.
Breath of Life
At age 28, I was diagnosed with stage IV lung cancer. I was a former college athlete and had never smoked. Three years later – after chemotherapy, surgery to remove my entire right lung, and months of debilitating radiation – I am working as a spokesperson and patient advocate for the Bonnie J. Addario Lung Cancer Foundation (ALCF) and participating in the Genomics of Young Lung Cancer study, mentioned in Aimee Swartz’s article “The (Non-) Smoker’s Disease.”
Because of this study, and the amazing care I received through the ALCF, I am starting to think about life after cancer (including the possibility of a baby!). Thank you so much for bringing this story to the attention of your readers. There are thousands of young, healthy, athletic women like myself out there facing a diagnosis like mine. They so desperately need to know that this isn’t their fault, and they aren’t alone.
Emily Bennett Taylor
The video link in my last post didn’t show up in email, so click HERE to watch the video and the surprise ending of my keynote speech at the World Conference on Lung Cancer!
This past week, I was given the honor to deliver the keynote address at the Opening Ceremonies of the World Conference on Lung Cancer from the International Association for the Study of Lung Cancer (IASLC) in Denver. In front of about 3,000 oncologists, surgeons, radiation oncologists, researchers, patients and pharmaceutical representatives, I shared not only my story, but the patient perspective, focusing on the need for aggressive treatment and pushing the boundaries of the standard of care.
Below is a video of my speech – make sure to watch through to the surprise ending!
If you are under 40 and have lung cancer, PLEASE sign up for the ALCF’s study, Genomics of Young Lung Cancer. It is open to young patients form around the world. More information HERE.
Much love, live in the moment.
Cancer evokes paralyzing fear as it threatens your entire future. Life milestones, once assumed inevitable, become unlikely possibilities. More, your mere existence hinges on factors outside of your control. The fear can be suffocating; and not just for the patients, but for all those around us.
Through my position at the Addario Lung Cancer Foundation (ALCF), I am in contact with new patients each week. The most common question I have is not about side effects or treatments, but rather “How do you deal with the fear?”
Miles often tries to paint a picture that I am stoic under all circumstances. Almost inhuman with my composure. I’ll admit his unwavering confidence in my own confidence makes me stronger. But he forgets that on the day of my diagnosis, it was me he found curled in a ball, sobbing in the shower. Fear had crippled my legs. And there, under the falling water, I lay completely vulnerable without any strength. I was suddenly fighting for my life and I felt unprepared, weak, and frightened.
That night, Miles and I made a vow: Cancer would never steal one more moment from us. We began to plan and talk about our future…a future without cancer. Each night, we envisioned the same three scenarios:
One, we would give back and help other patients. The care and support we were receiving from oncologists, surgeons, family friends, and the ALCF was extraordinary. We wanted to ensure all patients had the same opportunities and advantages that I was receiving. And today, thanks to Bonnie, I have been given the opportunity to fulfill this promise each day through my work with her foundation.
Two, we would join in celebration with our family and friends to thank them for their overwhelming support. You all provided us with the greatest gift: love. We felt it around us constantly. It gave us such strength. It inspired us with so much hope. It bolstered our fight. So, we started planning a party that we would throw when I was two years cancer-free to thank everyone who helped make me a survivor.
To be honest, in the summer of 2012, a celebration party felt like a very distant dream. There was so much to get through in the meantime: chemotherapy, finding a surgeon, traveling to New York for treatment, enduring radiation, a long and difficult recovery, and finding a new “normal.” Whenever things got tough, Miles would remind me of how incredible our 2 Year NED party was going to be. Often at night as I struggled, he would start imagining the event. And to make me smile, he kept making it more and more grandiose. No, this was not going to be a typical summer BBQ. It was going to be a fancy affair…Lights illuminating the night sky…DJ spinning dance tunes…Caterers walking around offering appetizers with fancy names. He would survey the imaginary crowd of guests and tell me who was there. It would make me giggle with excitement. I wanted that day to be a reality so badly.
And on May 23rd, it became one. Miles and I threw the 2-Year NED party of our dreams. And let me tell you: IT WAS WORTH THE WAIT!
That night, we welcomed about 75 of our dear family and friends to our home to celebrate this momentous occasion. Just as we had imagined over the past three years, the party was spectacular. We were surrounded by so many people that we could never truly thank in words. We had family, friends from college, workmates, college coaches, and even Dr. Reckamp and Carrie Christansen, my care team from City of Hope. And under the glow of about 5,000 white Christmas lights, we ate, drank, and danced the night away in honor of this life event. In the end, as hard as cancer tried to take away my life milestones, all it did was create new ones to enjoy.
Three, we would spend each night dreaming about our future family….which may not be such a dream anymore…stay tuned for that in the next post! :)
Much love. Live in the moment.
It was the first scan that I was nervous about…I mean really nervous. So much was riding on this.
Statistically, 2 years of clean scans showing No Evidence of Disease (NED) represents a significant milestone and increase in survival. But to be honest, as I’ve stated many times on this blog, I’ve never been one to be too hung up on the statistics.
Rather, the 2 year mark was so nerve-wracking because it signified something even bigger…something that cancer so cruelly pauses upon diagnosis…it presented me with the opportunity to finally push play on my life again.
Since my diagnosis in June of 2012, I’ve been the cause of so much stress and pain on my family. Of course, they all never complain, but I could easily see the effects. It’s not hard when Miles is continually gripping his chest and trying to beat the ulcer out of his stomach. Or, when I call my grandparents and my grandmother cries each time she says goodbye to me. I hate seeing my loved ones hurting over me. I once asked Miles to just relax and breathe easy, and he told me, “I’ll breathe normally when you’re 2 years NED.” So, I internalized his comment and earmarked that 2 year date. Each night, I’ve prayed and hoped for it to come sooner, as with it, I hoped it would finally bring peace to my family.
Perhaps what loomed largest though was the opportunity to start a family. The first step we took after diagnosis was preserving our fertility. Those nine embryos became my motivation. I was no longer just fighting for myself. I was fighting for my future family. Each morning during meditation I would picture and see this family. Hold them, love them, imagine a life with them. It fueled me. It inspired me to fight harder. But, we were instructed not to consider a family until 2 years of clean scans, so that dream, like most things after diagnosis, was put on pause.
So a few weeks ago, as we sat there in the doctor’s room waiting for the results of my two-year scan, I could hardly control my emotions.
And then Carrie, our wonderful nurse practitioner, walked in and in her classic nonchalant way, looked at me and said, “You’re fine!”
I broke down. I sobbed. I fell into Miles and cried. I let years of frustration and fear out of me. He held me and then whispered in my ear, “You’re going to be a Mommy.” And I cried even more, but with the biggest smile on my face.
As we shut the car door, ready to head home after seeing Dr. Reckamp (who, by the way, switched me to the twice-a-year schedule for routine scans – YAY!), I paused and looked over at the fountain in front of City of Hope. Nearly three years ago, Miles and I and our families had held each other at that fountain after learning I had Stage IV lung cancer. Today, I looked at that same fountain, and just reeled back and screamed, “I’m NED!!!!”
It takes a village to raise a child. It takes Team EmBen to grow a baby!
Miles and I are beyond excited to push play again on life, and start our own family. But the reality is, we can’t do it alone: we will need a surrogate. The hormone surges caused by pregnancy have been shown to be linked to recurrence of lung cancer. As such, I have been advised by my doctors to not carry our embryos myself.
Since Team EmBen has been so resourceful and supportive in the past, we are reaching out to all of you for help in finding a surrogate. We would love to undergo this process with someone who comes from a trusted source. We understand this is such a large ask of someone, as a pregnancy is a considerable undertaking. However, if you know of anyone who may be interested in providing this immeasurable gift, we would love to hear from them.
Some questions that may arise:
- When are we looking to have our child?
Ideally, we are hoping to perform an embryo transfer as soon as possible, preferably this summer. So, yeah, that’s soon.
- Is there compensation?
Yes, of course! Money for this process was so thoughtfully donated to us at the time of my diagnosis. We would love for this money to go to someone we know (or someone who knows someone we know!), rather than an agency.
- Who are you looking for?
Ideally, surrogates have no major medical issues, have at least one of their own children, had pregnancies and deliveries with no complications, and are physically healthy.
- What would be expected of me (surrogate)?
Essentially, there would be 3 appointments in Los Angeles. Each appointment would be a month apart. You would be able to choose your own OB/GYN at home, and the baby would be born wherever you are. In the meantime, your only job would be to have a healthy pregnancy.
If you, or anyone you know, may be interested, please email us at email@example.com.
As ever, thank you all for joining and supporting us on this journey. We are so grateful to our loving Team EmBen supporters!
Much love. Live in the moment.
Emily & Miles