“I promise” – 7 Years NED

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?

7 years NED pic

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.

I promise.

 

(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.)

Update – See Life Break Through

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.

H&M Irish

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.

Atlantic Live AmgenAt 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.

Much love. Live in the moment.

EmBen