8 Years NED!

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.

2021, by the NED sign we held in 2013
2013 in the Mt. Sinai ICU, NYC

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.

Post-bath snuggles with Maggie
Mommy and goofy Hope 🙂

Much love. Live in the moment.

EmBen

2020 Ain’t All Bad

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.

I carried these with me on scan day – Hope made me the heart, & Maggie bestowed on me this precious feather…which she picked from a couch cushion 😉

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.

Miles’ Scan Day wardrobe since 2012: Same “lucky” plaid shirt and ripped jeans, no matter the temps (usually in the 90s!).

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.

Our beach babies (ML/HR)

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.

Much love. Live in the moment.

EmBen

“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.)

Love you, Rick

I don’t want to be writing this post.  I don’t want to be sitting here, wiping tears away with a nearby burp cloth, and mourning the loss of another friend, taken too soon by lung cancer.

rick-emben-editsI’m not sure I can put into words the bond I shared with Rick Moeller.  He was like a father-figure, a friend, and a fellow fighter, all rolled into one. We were comrades on this journey, always encouraging, ever-positive. I believed with everything I had that we’d be there, together, paddling the waters of his beloved Florida Keys in kayaks, riding off into a lung-cancer-free sunset.

But my heart breaks today. Rick is gone, and I just can’t help but feel that this is so WRONG. How is it possible that so many healthy, wonderful, kind people like Rick are being taken from their loving families by lung cancer? Fathers. Mothers. Brothers and sisters, husbands and wives. So many of us are dying – how can we make it stop?

I don’t have the answers today – mainly, I just have tears and confusion.  But I do have one thing we can do to help, and I would consider it a personal favor if you joined me in this fight:

Join my team, Team EmBen + Rick, for the San Dimas, CA Bonnie J. Addario Lung Cancer Foundation’s 5k event on Sunday, February 12, 2017.

If you can’t come in person, please donate.  If you can be there, please join with me and my family on Team EmBen + Rick to show your solidarity against a disease that attacks without reason, takes without justice, and must be put to an end.

Thank you for your support.  I know we all have so much going on – Thanksgiving next week, Christmas/Hanukkah shopping, the flu, school work, job stress – but please take an extra moment tonight to appreciate those most important things in life – those you love.  And please – join me in this fight. (Click HERE to join our team – make sure to join an existing team, “Team EmBen + Rick” – or HERE to donate).

Tonight I’m sending a special hug and so much love to Karan, Dylan, and Chelsea Moeller.

Much love. Live in the moment. Stay Rick Strong.

EmBen

BIG Baby News (like really REALLY big)!

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 . . .

twins 1 angela family

Angela and Aaron, with their adorable boys, Austin, Aiden, and Alexander.

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!

twins 2 ultrasound combined

twins 3 13 weeks

Every Wednesday, Angela sends us a Baby Bump picture update. Last week, the twins were as big as peaches…

twins 4 14 weeks

…and at 14 weeks, they are now our little Lemons 🙂

 

 

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

The Patient Perspective

FLORES RECKAMPSPEECHROSENZWEIGG

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.

EmBen

Making Dreams Come True

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.

AYA, ALCF, Bonnie, Corey, Sandy

Hanging out with Bonnie and some of the awesome patients she’s connected me with – Corey Wood and Sandy Jauregui-Baza.

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.

IMG_1946 cropped

Some of the gang celebrating out on the dance floor!

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!

IMG_7436 (2)

My boyfriend, NED, even made an appearance. And boy was he popular (see pictures below)!

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.

Emily

NED party - NED

Gracias a Dr. Flores

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.

Dr. Flores –

maya 1

It was slow-going, but I made it!

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.

Thank you for this opportunity. Thank you for a chance at this life. Thank you for hope.

MUCH love.
Emily

maya 4 maya 3 maya 2maya 5 

“I Feel Normal”

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.”

Christmas CardSure, 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