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 ūüôā

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 ūüėČ

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. ‚ÄúScanxiety‚ÄĚ they call it. The pacing begins; then the hypervigilance over every little cough (‚ÄúWhat was that? You feel ok??‚ÄĚ). Then the seemingly random and incessant question: ‚ÄúYou promise?‚ÄĚ

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‚Äô internal anxiety. He‚Äôd ask ‚ÄúYou promise?‚ÄĚ and I would know instantly he was worrying. It became our shorthand for all the things we couldn‚Äôt possibly put into words – ‚ÄúYou promise?‚ÄĚ was a way for him to ask me the impossible, to beg me to confirm what we could never truly be certain of: ‚ÄúYou promise you‚Äôll be ok?‚ÄĚ

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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‚Äôd respond ‚ÄúI promise‚ÄĚ – usually, on good days, I‚Äôd 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 ‚ÄúI promise‚ÄĚ 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‚Äôll be here in a year. In 10. In 20. I promise we will get the life we‚Äôve been dreaming of, the life we‚Äôve 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‚Äôve 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‚Äôd come to consider friends. People we‚Äôve looked to for hope, people we‚Äôve 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 ‚ÄúI promise‚ÄĚ 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 – ‚ÄúI promise.‚ÄĚ

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 ‚Äď as Miles has the flu and we don‚Äôt 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.

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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 ‚Äď 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‚Ķand 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 ūüėČ

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 ‚Äď I am always available to you.

Much love. Live in the moment.

EmBen

Cover Girls

I am honored to share with you our Cancer Today cover story! cancer-today-coer

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.

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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

 

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Mommy reads while the girls devour the article.

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Hope (L): “Wow, Mommy – this is amazing!” Maggie (R): “Check ‘cover girl’ off my bucket list!”

 

4 Year Freeziversary

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.

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Me, 4 years ago, with pictures of all 9 embryos; Maggie in the watermelon; Hope in the whale; both in the toothless grins ūüôā ¬† Can you believe these two were frozen for over 3 years?!?

 

Letter From A Soon-to-Be Dad

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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.

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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.

Much love. Live in the moment.
Miles

The Waiting Game

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On the way to LAX!

The babies are almost here!

On March 30th, I flew to Kentucky to spend the final weeks of the pregnancy with Angela and her family.  Miles drove me to the airport, and we confirmed his plans to join me when it appears the birth is imminent.

I’ve been in Lexington over a week, spending the first few days at Angela and Aaron’s home. My time has been filled playing games with their three sweet boys, and of course spending as much time as possible with Angela and the “bump.” ¬†Feeling the girls kicking and hiccuping and moving has been absolutely surreal.

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My mom caught this special moment as we were watching tv – the girls had hiccups!

My mom has come from Memphis, and we’ve¬†settled into a nearby rental. ¬†The waiting game has begun! ¬†In the meantime, we’ve¬†been making meals so Angela doesn’t need to cook, tagging along to¬†preschool pick-ups and soccer games, and helping¬†Angela get as much bed rest as possible by binge watching Gilmore Girls. Only 136 more episodes to go. ¬†Thanks, Netflix!

So far we’ve had several doctors appointments, and all news has been spectacular. ¬†The girls are developing well, and it looks like Angela will be able to carry them a few more weeks to put on the finishing touches.

I am not a person who gets overly stressed in difficult situations (see: me sleeping soundly every night since my diagnosis). ¬†But, I think somewhere, deep inside, I have been worried about these girls. I was worried early on we might lose one, or worse, both. ¬†I was scared they might have a genetic abnormality. ¬†I was terrified they’d come far too early, and our first few months would be NICU visits and constant fear.

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So grateful I finally go to be in a “bump” shot!

But being here with Angela and seeing all she has sacrificed for us, and how well she’s been caring for herself and for these babies, just shows me that as far as she was concerned, I had no reason to be worried at all. On top of running her household, and caring for her three (active!) boys, I am in awe of the grace she shows in carrying our precious cargo. She never seems to tire, and she always has a smile on her face. ¬†She has treated this pregnancy with the same tenderness and love I know¬†she gave to her own children, and that is a gift we can never repay. The gratitude Miles and I feel towards her knows no bounds, and we couldn’t have asked for a sweeter, more perfect person to share this experience with, and to bring our girls into the world.

Babies: Stay in there and bake those chubby little Buddha bellies as long as you possibly can. But know that I’m out here, just on the other side of Angela’s [amazingly-small-for-twins-and-incredibly-un-stretch-marked!] belly, feeling your beautiful movements, and just aching with excitement to see you.

Mommy loves you!!!

EmBen

For My Love

When I met my husband, Miles, in college, I was independent, carefree, strong-willed. I wanted a career, and I wasn’t sure marriage or children fit into that. But Miles – he made me laugh like I’d never laughed before. And that’s all it took. His desire for a whole basketball team of kids running around was infectious, and within weeks of dating I knew he was The One. ¬†I was lucky that he felt the same, and am so grateful this streak of luck continues all these years later.

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Miles carried me across the threshold of the little cottage we rented after college.

After college, we moved in together, and I got that business-suit-wearing career I’d always dreamed of. Throughout our 20s we worked hard and played hard, enjoying our “kid-free” time. ¬†We got married at 26, and agreed to take a few years to soak up married life, getting in as much travel and adventure as possible. ¬†

When we were 28, “the plunge” was something we were both ready for. Sure, it wasn’t easy giving up the idea of our carefree life, but together, we were ready for the change and responsibilities that a family involved.

Kickin' Cancer's AssInstead, we got cancer. I say¬†“we” because when I was diagnosed with Stage IV non-smokers lung cancer, I never once felt like I was on my own. This diagnosis affected both of us, and every step was made together. Sure, I was the one with the chemo IV in my arm – but Miles was the one lugging half our house into infusions in order to make me more comfortable: a laptop for movies, earphone splitter so we could laugh at comedies together, pillows and blankets for comfort, water and snacks.

Miles allowed me to focus on my treatments, and on beating this beast, while he took care of literally everything else. ¬†He continued to work, but cut back his hours so he could be at every appointment, furiously taking notes and asking questions. He stayed up long after he’d tucked me in – where he guided¬†me through meditation to ask¬†my body to kill the cancer – and would research obscure medical journals from around the globe in search of new treatment options for me.

9.9.12 NED

Only 2 months into treatment, Miles made this doodle for me, depicting my oncologist, Dr. Reckamp, telling me “Emily, you are NED!” At the time, this felt SO far away. A pipe dream. But, Miles believed this was our future; that faith gave me the strength to make it our reality.

He refused to believe the dire predictions of my diagnosis, and shielded me from all the scary statistics. He knew I needed mental peace in order to win this battle, and I trusted him enough not to consult “Dr. Google” on my own. He scheduled second and third opinions, held my hair back as I hugged the toilet bowl, and got me triple chocolate protein shakes when his research showed that I needed to gain some weight before starting chemo. He called those extra pounds my “chemo cushion” and believe me, I wasn’t complaining.

If I was sick, Miles forewent his beloved Steelers football Sundays. If the only thing I was craving was English muffins and applesauce, he’d drop whatever he was doing Hospital_1to go to the store. He made sure our beloved pup, Ginny, was always on hand to snuggle with me on those particularly difficult days.¬†Even though it doesn’t come naturally to him, he accepted the help that family and friends were offering, knowing that it would help him be a better caregiver to me.¬†When we found out I was allergic to the flowers friends were sending, he contacted our amazing support network to thank them, and request that any further gifts be non-floral. He carefully taped¬†each¬†and every get-well card I received onto our dining room walls, creating a wallpaper of hope and encouragement.

I owe the past 3 cancer-free years to my loving husband. He scoffs when I say this, as if his role has been minimal simply because I was the one getting poked and prodded and poisoned. But his role was anything but minimal. He found the surgeon who would operate on me when no one else would, giving me the cure we desperately desired. When radiation knocked me for a loop and I couldn’t get off the couch for months on end, he nursed me back to health, cheering me on as I took each small step toward recovery.

Miles decided, each day, to take some part of the¬†burden off my shoulders. ¬†He never gave up hope, even when the odds were so stacked against me. He never hesitated, even when we had no idea what the future held, or what life after treatment might look like. ¬†He kept his promise that “cancer would never take one day away from us” by never letting me doubt, and always filling me with hope.

And through it all, he continued doing what he does best: he made me laugh. And for me, that’s all it took.

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Before we were even pregnant, Miles surprised me with this shirt for my birthday. I think my grin says it all!

It’s taken a bit longer than we expected, but Miles and I are finally back on track with the life we always imagined. This April, “the plunge” awaits us – as many of you know, we are expecting twin girls via gestational surrogate. I know we are in for a doozie. But, through all the sleepless nights ahead, the midnight feedings, and the new-parent blunders, I have no doubt that Miles will continue doing what he’s always done: he’ll be there, right by my side, for whatever comes our way. And, inevitably, probably even in the middle of an epic double diaper blow-out,¬†he’ll make me laugh.¬†These little girls have no idea how lucky they are – they’ve got the best daddy in the world.

I love you, Miles. So much. Happy Valentine’s Day, baby!
Emmy

3 Years…NED!

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.”

Em, Miles, and NED

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.

COH speechYesterday, 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.

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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!

Much love. Live in the moment.

EmBen