“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.)

19 thoughts on ““I promise” – 7 Years NED

  1. Miles and EmBen: congratulations on 7 years of NED! Those are the best words you could have written. The darling ginger twins will have you around for years to come. love Robin Hanley

  2. So beautifully written and so happy for you. I found you when I googled Dr Flores. He saved my Mom many years ago and she absolutely loved him. Sadly she passed 7 years ago from an unrelated illness and Se Flores remained her angel.
    Enjoy life like you do and continue to make many happy memories. ❤️

  3. What a beautiful thing to see. God’s blessings fully appreciated in the moment. You are a walking miracle and you help so many.
    Thank you for sharing 💛
    Mona in Florida 16 months NED 🥰

  4. Dear Emily. You write very well. I’d say write more but i guess you’re pretty busy. We’re rooting for you. God bless! Sent from my iPhone

    >

  5. Emily, you are an inspiration to so many (myself included)! Congratulations on 7 years NED, that’s amazing. At the same time I can’t believe 7 years have passed. Continue to live each and every day to the fullest. I would also be remorse if I didn’t say what a wonderful person Miles is. His love for you and the girls is so deep and unwavering. It’s heartwarming to witness. The world is a better place with the two of you in it, that’s for sure! ❤
    xoxo,
    Heather

  6. Beautiful EmBen. Thank you for sharing this. It’s such an amazing story it makes me feel grateful, strong and humble every time I think of you two and all those you’ve touched.

  7. Beautiful and inspirational words Emily. I am so glad that things are looking great for all of you. Keep up the good news. Love, Dino

  8. Dear Emily,

    Congratulations on 7 years NED!!!! I am so happy for you and for your beautiful family!! Your post really resonated with me as my husband and I always get pretty severe scanxiety about a month before my scan it does not go away until Dr. Flores comes in and says that everything looks good! The relief that we feel can only truly be understood by someone who has been there. I am hoping to hear those words again when I see Dr. Flores after my 4 1/2 year scan this May.

    Thank you so much for sharing your wonderful news and for continuing to give hope to so many of us who have been diagnosed with lung cancer. You truly are an inspiration!

    Warmest Regards,

    Lisa Hutter

    ________________________________

    • You are lucky that is likely a cure (anyone into their 4th year out). Dr Flores left some lymph nodes in me (unintentionally I like to think) and one right by the tumor had cancer cells and it then spread in the year post surgery to the soft tissue he dunked my stump into (I asked for pericardial flap dunk but he said it is fat and he wouldn’t try since I was thin (I wasn’t cancer thin just petite and thin)- so after a few years on different tki meds that stump- dunked tissue near LN he left in compressing most of my trachea and esophagus and apparently reaching to compress lower bronchus- every breath sounds like a rattling machine and I will be starting radiation as last possibility likely. So yes, it can go all ways with dr Flores and us

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