Well, here we are – 8 years (and a few more wrinkles) later. On February 9, 2013, I was recovering in the ICU after surgery to remove my right lung, pleura, partial diaphragm and pericardial sac, and mediastinal lymph nodes. As drugged and in pain as I was, the moment Dr. Flores told me I was NED (No Evidence of Disease) – and the hope that it held for us – remains crystal clear.
Miles and I know how lucky we are to be here today. We often think of the friends we’ve lost along the way to this awful disease, and those we know who continue to battle. We hope like hell that someday – hopefully soon – the possibility of receiving a diagnosis like mine is something no person will have to go through. In the meantime, we remain committed to fighting for lung cancer awareness and funding, and to a better day for all of us who are affected by this disease.
Stay safe out there, everyone. I’ll be cuddled up inside with these two – the reasons I fought so hard so long ago.
Miles and I traveled to City of Hope last week for my annual cancer scans, filled with the usual scanxiety. This was amplified by the fact that Miles would not – for the first time in 8+ years – be able to join me inside due to COVID-19 protocols. He has not only attended every single appointment, but he comes into the actual MRI room, and sits in my direct line of sight at the bottom of the MRI tube, in case I get scared and need a reassuring look from him. He’s the one who drops me off at one door for my CT scan, and races down the hallway to what he’s figured out is the exit door, just to make sure he’s there when I’m done with the scan. He carries my bag, rubs my back, and nervously holds my hand. So yeah, the fact he wasn’t even allowed in the building was weird for us.
However, in respect and gratitude for these new COVID-19 protocols, I donned my mask, got my temperature check and wristband indicating I was cleared, and entered the building. Miles drove to an onsite parking lot to anxiously await my update texts and calls, chewing his nails, his legs jumping anxiously (I didn’t have to actually see this to know it was going on). I had my usual blood draw, popped over for a chest CT scan, then headed for my brain MRI. Except for the 3 extremely painful pic line attempts by the phlebotomist who couldn’t seem to find a vein (something I was actually grateful Miles wasn’t there for, as he’d have passed out by attempt number two), all went normally and surprisingly quickly.
I missed my main cheerleader, though, and when he swung the car around to pick me up, I collapsed across the center console into his arms. Being a patient can be a lonely job, and it’s times like this I remember how lucky I am to have his reassurances, his hand on my back, his reminders of why I’m fighting, and his love when blood draws go bad and I desperately need a hug.
This year was made further complicated by the fact that my amazing oncologist, Dr. Karen Reckamp, switched facilities. I am so happy for her at this awesome new position. But, Miles and I did have to admit that it put a bit of a wrench in our normal routine. We agonized for a few weeks over what to do: stay entirely at City of Hope for old times sake? Switch institutions with her? We opted for what we believe to be the best-case scenario: staying with City of Hope for testing and scans (the superstitions in us just couldn’t imagine doing these elsewhere), and keeping Dr. Reckamp as my oncologist (the thought of anyone else was unacceptable).
We felt good once the decision was made, but as my scan drew closer, new anxieties crept in: Would it be more difficult, now that my scans and doctor were in different places? Were we bucking an already-proven method, and would that somehow lead to some sort of issue? (superstition is a bitch – especially in the cancer world). And, most importantly, would we still be able to get same-day results? I’m not sure I can fully describe to you the amount of stress and anxiety involved in waiting for scan results. Waiting for the scans and tests themselves is bad enough, but the minute those are done begins the waiting and the worrying about what the tests will actually say. What they will mean for your future, your life, your family. All of it. Dr. Reckamp, her amazing PAs, and City of Hope have always gone above-and-beyond to make this wait as short as possible for us, saving us mountains of stress, and probably a few bottles of Xanax. We had no idea what to expect this year.
So, we waited. I texted Dr. Reckamp that morning to let her know Miles was wearing his trusty “Scan Day” outfit, something she gets a good chuckle from. And then Miles and I sat in bed, watching episode after episode of The Wire, mindlessly eating junk food, and blessedly distracted by photos and videos of our girls, who got to have a “vacation” at Grandma and Pop’s house while we just WAITED. Around 4:30 pm I (hopefully un-annoyingly) texted Dr. Reckamp a hail-mary, “Just wondering if you might have heard anything on the scans?”
Her response: “Brain and CT look clear. Sleep well tonight!”
My main cheerleader and I screamed and ran around the house, hugged and cried, and let the feeling of another cancer-free year wash over us. The waiting never gets easier. But the relief and hope…that gets better with each passing year.
Cheers to 7.5 years NED (No Evidence of Disease). Thank you all for your love and support.
About a month before every scan, Miles starts to get nervous. “Scanxiety” they call it. The pacing begins; then the hypervigilance over every little cough (“What was that? You feel ok??”). Then the seemingly random and incessant question: “You promise?”
This question began shortly after we returned home from my lung removal and radiation treatment in New York in 2013. It was like a nervous tick, a talisman of Miles’ internal anxiety. He’d ask “You promise?” and I would know instantly he was worrying. It became our shorthand for all the things we couldn’t possibly put into words – “You promise?” was a way for him to ask me the impossible, to beg me to confirm what we could never truly be certain of: “You promise you’ll be ok?”
I made this frame for Miles on my 2 year NEDiversary, using the paper he excitedly wrote on the day after surgery, when Dr. Flores first told me I was NED.
I’d respond “I promise” – usually, on good days, I’d see relief wash over his face. The closer we got to scan day, the question popped up more frequently, with more urgency; my response with less potency. But Miles needed to hear me say “I promise” just as much as I needed to say it – to feel like this was something I could control, something I could confirm. Yes, I promise. I promise I’ll be here in a year. In 10. In 20. I promise we will get the life we’ve been dreaming of, the life we’ve been begging and clawing and suffering for. I promise this scan will be good and we will be able to breathe again. I promise.
We’ve been lucky. Extremely and inexplicably lucky. We are keenly aware of this; just in the past month, the lung cancer community has lost several members we’d come to consider friends. People we’ve looked to for hope, people we’ve shared our fears with, people who wanted to survive just as desperately, and who suffered just as badly for it as I did. Yet no amount of wishing or praying or “I promise” could save them from this awful disease, and my heart is broken for their families and loved ones. My heart is broken for them, for all their un-lived hopes and dreams.
The injustice is shattering. And I’ll admit that the fear and sadness I feel at their passing causes me to catch my breath, to acknowledge the weight I feel in my chest when I think about what could have been for me.
It is with this in mind that I woke up today, on my 7 year NEDiversary. Remembering my own fight, but also burdened by the injustice my friends have faced in the loss of theirs.
I am unimaginably grateful for my outcome. Seven years ago, fresh off a lung removal and radiation that made me miserably sick for months, this life was a pipe dream. The reality Miles and I are now living is beyond our wildest dreams. It is what I was wishing and hoping for every time I would squeeze his hand, look into his eyes and will to be true – “I promise.”
In the uncertain world of lung cancer, unfortunately none of us can truly make this promise. We have no idea if the treatments will be effective, the scans will be clear, the outcomes will be good. But I need that phrase, and the confidence and hope that it inspires in both myself and Miles. We need to believe that, by making that promise, it is true. That I am NED. That I will always be NED. That 20, 30, 50 years is a reality.
(We are sad to miss the SoCal 5k today supporting the Go2 Foundation for Lung Cancer – formerly Addario Lung Cancer Foundation and Lung Cancer Alliance – as Miles has the flu and we don’t want to risk infecting anyone. This is a foundation near and dear to my heart, and it is doing so much good for patients like me. Please consider donating HERE.)
Hello All ~ It’s been awhile! Turns out, 3-year-old twins keep you pretty busy!
This blog originated in 2012 as a vehicle for updating family and friends of my diagnosis and treatment. However, it soon morphed into a story of inspiration for other lung cancer patients. My journey was an arduous one, but I was beating nearly insurmountable odds, and this gave hope to both newly diagnosed patients and those undergoing debilitating treatments for this disease. Since receiving my stage 4 diagnosis, I have been in contact with many patients through this blog, and it has become part of my life’s purpose to help others with advice, contacts and emotional support.
Hope left, Maggie right. We found out at 14 months, to our surprise, that they’re identical – a 0.5% chance. Still almost can’t believe it – except when I see that hair!
I am enormously blessed to be here, to have Miles, my health, and now my girls. And I am constantly reminded of my good fortune as many friends continue to lose their lives to this disease. I mourn them and I mourn for their families. And, quite honestly, it has made me reluctant to post when my life has improved while others are struggling.
But then I remember what it was like to receive that devastating news seven year ago. How the first thing Miles did was look for stage 4 lung cancer survivor stories to inspire me…and how he came up empty. So it is important to express my gratitude and share my success. Yes, the lasting side effects from my treatments are significant, but I am here. With this blog, I want to share hope – hope for life after cancer, hope for NED, hope for — dare I say it? – a cure.
This past weekend I went to Chicago for Amgen to share my story for this video (also below) at the annual ASCO (American Society for Clinical Oncology) Conference.
At the event I was honored to share the stage with many amazing survivors and caregivers, as well as Christophe Bourdon, VP and GM of U.S. Oncology Business at Amgen. Christophe and I interviewed each other, and it was inspiring to hear how Amgen works to include the patient perspective in the work they do.
Enjoy the video (278,000 views!!); I am so happy with how it turned out. Hope & Maggie make a few appearances, and I might be biased, but I have to say: they nailed it 😉
As always, I want to give thanks to all of you who participated in my fight. Team EmBen continues to be the greatest support network a girl could ever ask for.
To all new patients who have been diagnosed and are reading this, I want you to know you are not alone. Feel free to contact me through the blog – I am always available to you.
Over a year ago, Senior Editor Marci Landsmann read my surrogacy blog post, and contacted me about telling our story. She wanted to focus on our quest for fertility throughout our cancer journey, and after a few interviews, said she’d be in touch for an update once our future children were born.
Shortly after Maggie and Hope arrived, Marci reached out again, and talking with her was like catching up with an old friend. I am extremely grateful for the candid, beautiful, poignant way she told our story. I’ll admit she made me cry…several times. This story will forever be cherished by our entire family, but it will also provide courage and hope to cancer patients as they struggle to realize dreams of their own families. Thank you, Marci.
Hey girls, look what came in the mail today!
Also a big shout-out to the photographer, Dawn Bowery. This lady is a rockstar. She and her assistant, Marion, made the shoot so fun, dealt with 2 squirmy three-month-olds, and managed to capture some gorgeous photos of our family. Thank you, Dawn.
I am continually amazed where this journey has taken us. Thank you to Cancer Today for making this moment possible!
xoxo – EmBen
Mommy reads while the girls devour the article.
Hope (L): “Wow, Mommy – this is amazing!” Maggie (R): “Check ‘cover girl’ off my bucket list!”
Today is our Freeziversary! Four years ago, after undergoing fertility treatment while waiting to begin cancer treatment, I had the egg retrieval that led to the creation of our 9 embryos.
We were so fearful of what was ahead of us when it came to cancer – but so hopeful that those embryos would be waiting for us in better days. I’ve said it a million times: knowing we had our embryos was a beacon of hope during all the difficult days. They helped me push myself beyond what I ever thought I could endure.
I cannot believe the journey that has led us here, and I cannot believe how lucky we are to have our two amazing daughters, Hope and Maggie. There’s so much I could write about that’s happened since they were born on April 20, 2016, but I think I can sum it all up in one word: GRATEFUL.
Me, 4 years ago, with pictures of all 9 embryos; Maggie in the watermelon; Hope in the whale; both in the toothless grins 🙂 Can you believe these two were frozen for over 3 years?!?
Aaron, Angela and EmBen in the hospital. Babies could be coming any day!
Miles wrote this post a few days ago as he flew into Lexington. Now, we are sitting in the hospital, as Angela is being admitted (she had some abnormal bloodwork numbers yesterday, and they thought it best we come in). Since the girls are strong and healthy, if anything is off with Angela, it’s go time. We want to make sure our angel Angela is healthy as well!
“Write down where you see yourself in 10 years,” our professor instructed.
I was a sophomore in college. Even though I had no idea how I was going to pay for beer that weekend, I had no trouble quickly jotting down my answer.
Classmates were divided and asked to share their goals with one another. The first kid in my group confidently told us that he would be a partner at a Big 4 accounting firm. Next, my college roommate shared that in 10 years he would like to be a CEO of a Fortune 100 company. And then it was my turn, so I read my sheet. “I see myself as a dad of two kids.”
Clearly, I lacked the corporate drive my professor was probably intending with the exercise. But it was the truth. I’ve always known what I wanted to be: a Dad.
When EmBen and I started dating, having children was not a priority in her life. In retrospect, it was quite understandable. She was only 20 years old and focused on securing a job post graduation. Yet, it baffled me. How could there be anything more fulfilling than having a family? What else could you possibly want in life?
I learned in June of 2012 that what I wanted most in my life was to have a healthy Emily. Upon her diagnosis, my priorities were no longer fixated on whimsical visions of a future family, but solely focused on her immediate survival.
When EmBen informed me she wanted to save embryos, I was very apprehensive. I did not want to weaken her body before chemotherapy treatment. And most of all, I did not want to delay her cancer treatment. I remember coming to the realization that foregoing embryo preservation would mean we would most likely never have children. For me, it was an easy decision. Giving up on a lifelong dream was easy in comparison to the threat of losing your life partner.
However, like most disagreements, EmBen won, convincing me that undergoing fertility treatment would assist her emotionally in the fight against cancer. Our nine embryos were frozen in July of 2012, and remained so as she underwent her vast array of treatments.
Although EmBen always remained positive about children in our future, I was honestly doubtful. With surgery typically not an option for Stage IV lung cancer, it appeared that chronic, lifelong treatment would be our best-case scenario. Beyond that, clearance from doctors to have babies would most likely never come. Even after her surgery, I remained pessimistic, believing children would be too taxing and too damaging to her health. But like always, EmBen proved all doubts wrong.
Hugging our angel, Angela. It was surreal to spend the next hour feeling our girls in her belly.
In 2012 I remember writing, after the San Francisco Gala, that the ALCF (Bonnie J. Addario Lung Cancer Foundation) had provided us hope. There was a huge mountain in front of us to clear, but the ALCF had started us on the upward climb. We’ve been on the ascent for the past three years. And although the climb never stops with cancer, I can’t help but reflect that I am now on a plane descending into Kentucky to meet our two baby girls.
Thanks to EmBen’s courage, determination, and endless fight, I will be a dad. And although she’s all I need, she is giving me the gift of a lifetime.
Today marks a special day. Three years ago my loving husband, Miles, chased after Dr. Flores in the ICU to ask him if my surgery had made me “NED – No Evidence of Disease.” I held my breath – trust me, not easy with one lung – as Dr. Flores walked back into the room, and I cried tears of joy when he confirmed that yes, I was NED, and he could no longer see any cancer inside of me. You may remember that I called this “the best day of my life.”
It’s true – up until then, that WAS the best day of my life. Hands down. Now, though (warning, I’m about to get a little philosophical here) every single day after that is my new best day. That surgery paved the way for every day to be better than the last, because it gave me a chance to live the life that was nearly taken away.
I love this anniversary. It reminds me of where Miles and I have been, and how lucky we are to be where we are now. It provides us with a concrete measuring point to look back on that first year mark, and then on the amazing developments that were made possible by turning two years NED.
Yesterday, exactly 3 years after my surgery date, I had an incredible opportunity to reflect on the past three years, as I shared my patient story at the City of Hope Leadership Update summit. City of Hope is so near and dear to my heart, and I’m infinitely grateful for the chance to publicly thank Dr. Karen Reckamp, RN Carrie Christiansen, and the entire City of Hope team.
And finally, just because I can’t resist…the latest picture of our beautiful Angela! She’s doing such a great job growing these little zucchinis! Can’t believe we’ll already be at 27 weeks tomorrow!
Today, I am heartbroken over the loss of a fellow lung cancer friend.
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.
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.