If you would like to stay up to date on news and updates about Emily as she kicks cancer please click the “Follow” button on the right hand side of the screen on the “News and Updates” page. Every time a new post goes up on the website you will receive an email with the posting. What a fun treat for your Inbox!!
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 firstname.lastname@example.org.
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
Last night, Paul Kalanithi died at the age of 37. Paul was a renowned neurosurgeon at Stanford, dedicating his life to saving the lives of his patients. Lung cancer, though, reversed his role from doctor to patient, and then eventually took his life. Paul passed away last night while holding his 8 month old baby girl, Cady, and leaving behind his amazing wife, Lucy.
I met Paul and his wife in November at the Addario Lung Cancer Foundation’s San Francisco Gala. He was a shy, courageous, loving man. We stood next to each other on stage when survivors were honored. We had just met, but we were fighting side by side. Today, I am beyond saddened by the news of Paul’s passing.
I am always reluctant to press upon you all to donate or give to the cause. I already feel indebted to everyone who reads this blog for what you have given to me in my fight. However, in Paul’s honor, I am compelled.
I ask all of you to support a cause to stop this disease from stealing any more patients like Paul Kalanithi. Like me, Paul was a young lung cancer victim. The Genomics of Young Lung Cancer Study (GoYLC) is specifically geared to study young lung cancer, with the goal of scientifically determining the cause of the disease, as well as how to defeat it. It is a revolutionary study. And most importantly, it could have saved Paul’s life.
The GoYLC study is now up on crowd-funding site Consano. Even $20 will make a difference. Please click HERE to donate.
More Info on GoYLC:
If you are interested in learning more about the study, ALCF held an Adolescent Young Adult speaker series 2 weeks ago. I was a participant, along with other young lung cancer patients, Corey Wood (23 years), Sandy Jauregui-Baza (31), and Chris Draft (lost his wife, Keasha, at age 33). You can click here to see a recording of the live streamed event in which we reveal our stories and emphasize the need for this type of research, while Dr. Barbara Gitlitz carefully explains the science behind the study.
Hello from Tulum, Mexico. I just sent Dr. Flores an email, and I wanted to share it with all of you. While it may have been influenced by some amazing tropical happy hour drinks, the sentiments are real. I am so grateful for all of you, and most especially, Dr. Flores.
I just wanted to let you know that today in Coba, Mexico, I climbed 10+ stories to the top of a Mayan ruin. It was, in a word, incredible. I’m tearing up just thinking of it, since this is such a milestone.
We rented bicycles to get from ruin to ruin, which in and of itself, in the hot temperatures and high humidity, was difficult enough. Then to be able to climb to the top of that pyramid…to be honest, I couldn’t be prouder.
It wasn’t until our flight to New York City that the reality of what she was embarking on finally set in for EmBen. Midway across the country, thousands of feet in the air, she looked over at me. Fear had whitewashed her face. She began to cry, and asked, “Will I be okay?”
Since her diagnosis, EmBen had been hell-bent on cutting the cancer out of her body. Despite every oncologist and surgeon stating otherwise, she refused to acknowledge that a Stage IV diagnosis restricted her from surgery. It was her plan and she knew it would be a reality.
When Dr. Flores presented the opportunity for surgery in New York City, she jumped all over it. EmBen was ecstatic. She flooded him with questions about how quickly she could have the surgery and any potential roadblocks. Not once did she ask him a question about surgical success rates, past patients, or life limitations with one lung. She had blinders on and she was on a straight sprint for survival.
For the next few weeks, my mother and I prepared by spending countless hours researching the internet about complete lung removal surgeries and recovery. Meanwhile, EmBen planned what tourist attractions she wanted to see while in NYC. She had this aura of confidence and trust. It was highly impressive, yet almost inhuman.
But there on the plane, once she knew the plan was in motion, she finally let reality set in. “Will I ever be able to walk again?” “Will I ever be able to play with children?” “Will I be able to pick up a child?” “Will you have to take care of me forever? I’m so sorry.”
Emily had vowed from the first day of diagnosis to do whatever it took to survive. The success of the upcoming surgery in preventing cancer recurrence was anything but guaranteed, but it provided an opportunity for life, and with that, EmBen was committed. It was the emotional commitment to mutilate her body and forever change the way she lived her life that gave her greater pause. In that, she finally found fear. I wanted to relieve all of her doubt, but I too didn’t know what to truly expect. So, I just held her.
By the time we started our descent, EmBen had regained her buoyancy and was prepared for the “new normal,” a life that was perhaps missing past action and movement, but replaced with more appreciation and love.
The months of recovery, as documented on this blog, were incredibly challenging, filled with pain and fatigue. Slowly, she adjusted. Yesterday, though, was a significant day.
After I returned home from work, EmBen was recounting how she had exercised for 45 minutes, then went to the grocery store, then the post office, and finally Target before returning home. As she lay there motionless on the couch, preparing for a nap, she looked at me and said, “Miles, I feel normal.”
Sure, in reality, it may be a new normal. But those words hit me deep. I’m just so happy for that fearful EmBen on the plane nearly two years ago. I just want to go hold her once again and tell her to have no fear. She is embarking on the greatest decision of her life.
Thank all of you for your support and love in 2014. EmBen and I are so grateful and excited for 2015. May we all celebrate this year.
Much love. Live in the Moment.
Miles & EmBen