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New Adventures

It has been a while since my last blog post and there is so much to discuss. From particularly sick summers to new job adventures, I am once again fully immersed in Lung Cancer.

One of the last posts I worked on I discussed taking a break. I was exhausted, and to be quite honest very sad. Some of my close survivors friends unfortunately passed before their time and it took its toll on me. I needed to wrap my head around what was happening, and that if I continued being an advocate this was one of the side effects. Its easier said than done, but I’m ready to jump back in feet first.

To add to the weight of losing some friends, I also had some health problems of my own. For the first time in 4 years the New York City summer really tried to take me down. Multiple weeks of humidity in the 98-100% with heat index reaching 103 degree was enough for me to barely make it my 30 minute commute each way. Thankfully these weather difficulties passed as the seasons changed, but I ran into a new wave of health problems. I was diagnosed with Vasovagal Syncope after a few fainting spells thats scared the pants of all my friends and family. Turns out my low blood pressure is not always the sign of extra good health and my body was having a tough time regulating. Thankfully I have an amazing set of doctors who put me on the path to healing, but the mental side effects from these few weeks were scarring. I had to take a few days out of work to run around to all of my doctors appointments and tests, each time feeling major PTSD from my past. For the first time in four years my nerves were taking over. I was second guessing how I felt each morning when I woke up. If that was back pain, or my brain was playing tricks on me. I’d lie awake at night just trying to convince myself that if I didn’t sleep I would make myself more sick, which would start a lovely vicious cycle of fear of being sick, and fear of making myself more sick. The walk from the 6 train over to NYU Langone Hospital made my heart drop to the pit of my stomach. The thought of my usual routine of a bagel and bacon after my tests make me so nauseous I actually succumbed to the stress and hurled all over 1st Avenue and 31st street. That wasn’t my proudest moment. I felt like I was in an alternative universe and my stress and anxiety  consumed me. This was a first for me. I have always had stressful moments, but I had always been able to handle them. This was the first time that I truly, really was not. I leaned on my boyfriend, family and friends for support, and without that I don’t know what would have happened. The unbelievable relief of receiving clean scans, clean blood work, a semi clean Echocardiogram (they can’t get a good reading because Betsy, my lung, is in the way), and clean EKGs made me sob uncontrollably for about 3 days. I was so thankful to the universe, and vowed to TRY to not let my stress control me the next time I need to have a little more attention from my doctors than usual. Facetune_02-11-2018-10-49-11

The outcome of this rocky summer has been incredibly positive. For years I have spoken at walks, conferences, galas, and done news and radio interviews about my story and Lung Cancer advocacy, and I have decided to start to make this my full time work. If you get a moment please take a look at my new website www.amandakouri.com , and please consider using me for any functions you may need a speaker for.

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I has been a strange few months, but just like everything else in my life the silver lining has lasted longer than the clouds.  I will continue to work each day to see a world where no one dies of Lung Cancer. And I will work each day to make sure I stay as happy and healthy as possible. I lead a one-derful (get it, get it?!) life, and I hope to encourage others to do the same.

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Starting over at 24.

I’ve been wanting to write a post about this since my diagnosis, but I haven’t had the breadth of words to discuss it. But her we go!

Before I grew sick I was a singer and a dancer. It was my passion beyond all. As I got older, it got harder. But not in the same way it did for others. For others it got more competitive, for me I physically couldn’t do it.

About a year and half before I was diagnosed I was always sick, my breathing was dreadful and I decided that it was the stress from my life in theatre that was causing my ailing health. So I made the change and decided to leave the stage for good. For a very long time I remember saying “wow I’m so thankful I chose to leave my passion before I got sick or else this would be tragic.” But that just wasn’t the truth. I knew I was sick for a while, I was going to doctors but we had no answers and I left because I physically wasn’t capable.

Leaving my first love of theatre was one of the hardest things I have ever done. From the time I was a small child it was all I wanted to do. Sure I still sing now and then, but with one lung it’s completely different.

At the end of the day, my life changed because of Lung Cancer in a million ways. I get frustrated by many things, but this is probably top of my list. I put in years of hard work and had to throw it away, and it feels like I threw part of myself away with it. I meet people now who never knew the first 24 years of my life, and sometimes that fact makes me very sad.

But  I can’t stay sad for long. Closing that chapter opened up the rest of my book. While I dearly miss being on stage, I am so proud of all the work I’ve done to get to where I am in my career. I go to sleep at night and dream about the millions of things I can do and be, and it is a magical and sometimes wonderfully overwhelming feeling.

Being told you’re sick when your 24 could have put a huge damper on my life. Instead it really opened up a million doors for me to look through.

I miss performing because I miss going on stage and using every amount of energy inside of me to tell a story. Well the truth is that I get to perform my story every time I speak publicly, and it is just as fulfilling.

At the end of the day, I’m only 27, about to be 28. I have at least 70 more years ahead of me, and each day I can play someone new. But I’d rather enjoy each day as it comes, and not worry about the future, and especially not to wallow in the past. I’m proud of who I am in all forms, and I can’t wait to see what comes next.

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The Burn Out Was Real

To be completely transparent, I was sick of talking about Lung Cancer. I was tired, frustrated, and I wanted to be a normal 27 year old.

I was and still am slightly embarrassed to admit it, but it’s true. The burn out was real. For 3 years all I’ve done is talk about Lung Cancer. I was so honored to advocate with amazing organizations, like Lungevity, but I was still tired.

That is until this weekend. This past weekend I attended the Annual National Hope Summit in DC, and let me tell you. The burn out is OVER. The Hope Summit is a conference where 400 survivors, caretakers, scientists, doctors, researchers, Pharma reps, and wellness speakers come together to discuss Lung Cancer. Now as I type this I realize you all are thinking, “wow what an incredibly sad weekend”. But let me tell you, I have never partied as hard in my 27 years than at the Hope Summit. These are some of my best friends and they truly fuel me. And it made me realize something incredibly important. We are not alone in our Lung Cancer, but also we are not alone in our advocacy. I talked to many of my colleagues and I was shocked to hear, they also had at one time or another felt the burn out. It was such a relief. I didn’t feel like I failed my LC family taking a little time off, if anything I felt normal.

So as I type this I also realize that I have work to do. It’s not just about getting on a stage and asking strangers to give all their money to the most deserving cause It’s also about staying in contact. It’s checking in on my friends who are facing some challenging years. It’s about reminding all of you out there to keep Lung Cancer in your mind. It’s to talk to a stranger about this organization, because you never know how Lung Cancer affects their lives. The big ask is amazing, but the small ask is what matters.

I have been inducted into the weirdest club around. And the Hope Summit is our summer camp. It’s not nearly long enough, and every weekend Sunday comes and I tearfully board my flight with dozens of advocacy ideas to fuel my mind for months.

This weekend I learned about Liquid Biopsies, Proton Therapy, Palliative Care, targeted therapy for NSLC mutations, and the use of Epigenetic Drugs in Disease. (Yes I graduated with a degree in Musical Theatre, and let me tell you I feel like now I’m basically a doctor.) But almost with equal importance, this weekend I made new friends, I learned about how people are dealing with their diagnosis, and how I can help them. This weekend was the perfect combination of life saving science, and stimulating conversation with the most powerful people I know, Lung Cancer Survivors.

Take a look at all of us looking super pretty.

 

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I conclude this post with saying thank you to Lungevity. Thank you for putting on a fabulous conference in which I get to heal.

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A Look at Advocacy in 2017

 

2017 has been my most successful year of advocacy yet. From walks, to speaking engagements, to marches, to filming commercials, and awards I have not stopped talking about Lung Cancer. And I don’t see that changing anytime soon.

I want to spend a few moments recapping my last few humbling and incredible months.

To kick of Lung Cancer Awareness Month I participated in the Breathe Deep NYC walk on October 28th.  Amanda’s Army raised over $2,000 for Lung Cancer Research and we had over 20 people join my team (and 2 VERY good pups!). It was a wonderful day filled with laughter, a few tears, lots of love, and even more HOPE. IMG_8549

A few weeks prior I was honored to participate in Lungevity’s new ad campaign “Inhale for Life”. I was lucky enough to see myself on the “big screen” in Times Square. Times Square has more than 355,000 people visit each day. Since 1 out 17 people will be diagnosed with Lung Cancer, I’d say we are reaching a pretty incredible audience with this commercial. Congratulations Lungevity! Screen Shot 2017-12-14 at 11.50.55 AM

And finally as some of you know I had the extreme privilege of being awarded the Face of Hope Award from Lungevity. On November 2nd, I stood in front of a group of scientists, doctors, survivors, philanthropists and my closest friends and family and accepted an achievement award for excellence in advocacy. I am humbled beyond belief.Screen Shot 2018-01-08 at 6.04.17 PM.png

Now that is more than enough about me. Because the truth is while I got to do all this, my friends continue to die. I am beyond devastated to say that one of my dear young fellow survivors ran out of time just a few days ago. John Cherol should be remembered and cherished as one of the smartest, tenacious, bravest men I’ve ever met. And his wife Kristine should go down in history as the most incredible caregiver ever. My heart breaks for them. And while I can celebrate all I want about my fantastic year, the truth is, its not good enough. We haven’t done enough. We need more funds, more research, more survivors.

John, you touched me in ways I couldn’t imagine. I’ve thought of our young survivor dinner and silly banter nonstop for the past year. It is heartbreaking that we won’t get to go around saying “Fuck Cancer” together for 75 more years. 26166939_3396194029271_3234177518316405793_n

Kristine, thank you for tirelessly advocating for your husband and for Lung Cancer. I feel privileged to know you, and all who have met you can say the same thing, this did not go down without one hell of a fight.

I end this post saying this. I am proud of myself, my friends, my fellow survivors, my doctors, scientists, researchers, and all those who touched Lung Cancer in some way this year. Lets keep going next, but for John lets go harder, and better, and more ferociously. Oh and FUCK CANCER.

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The War for Cancer Research

Cancers are not created equal.

There are trendy Cancers, there are rare Cancers, there are Cancers that metastasize into completely new Cancers, and there are stigmatized Cancers. They all suck, but they are not all treated equally.

The truth is certain Cancers got lucky and the public rallied behind them to find a cure. They raised billions of dollars, and we can see what that money was put towards. The facts don’t lie the mortality rate has hit a steep decline in the past 30 years. The money that is funding the research is working.

So we know that this method works. More money, more research, more lives saved. But Lung Cancer is the deadliest Cancer, so why don’t we rally behind it? Why don’t we know that the White Ribbon is for Lung Cancer? Why don’t we have catchy phrases like “save the lungs.” ?

The truth sucks to say out loud, but we don’t have this funding or national support because Lung Cancer has a big ole stigma. Most people believe that if you have Lung Cancer, you gave it to yourself. You smoked – you shouldn’t have but you did, so now you deserve to die.

Is there a way to change this? Do people who smoked really deserve less funding? What about those who never smoked, do they deserve to die because others chose too? Why can’t Lung Cancer be trendy? Why don’t we have celebrities announcing they have Lung Cancer to put a face to the disease? What can we do better?

I ask myself these questions everyday. And the truth is I was stuck on this paragraph for hours because somedays its just too frustrating to think about. The stigma will take years to dissolve. But in the mean time we need to talk about Lung Cancer. We need to educate ourselves and our families that this is not a smokers disease. We need to raise money however we can. And we need to educate our doctors to look for Lung Cancer early.

At the end of the day, life isn’t fair, Cancer isn’t fair. But we can work together to educate, raise awareness, and help creating a world where no one dies of this stupid disease.

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Get A Hobby.

For the past 4 months I have been surrounded by Lung Cancer in the best way. I was honored to speak at the Lungevity Hope Gala in DC. Doubly honored to attend the Lungevity Hope Summit the following weekend. Forced my entire book club to read “When Breath Becomes Air”. Helped throw a very successful cocktail party for the Lung Cancer Research Foundation, and was asked to speak for a few moments to the young professionals who attended. And finally got the honor to participate in Lungevity’s 2016 Foundation Video. Here I am!  https://www.youtube.com/watch?v=za8gv41QEtw

It’s been a pretty magical couple months.

 

What Advocacy Means To Me 

I am an advocate first because I am a voice for those who no longer have one. I can spew facts until I’m blue in the face and my one lung gives out, but the truth is sometimes it feels like it isn’t enough. Yes I am an eternal optimist. I do believe we can live in a world where no one dies of Lung Cancer. I believe that every Facebook post, every bracelet I give out, every time someone asks me if I smoked does change the world a bit. But until we get to a long term manageable disease we are still loosing our children, parents, grandparents, coworkers, and loved ones to this deadly disease. And its exhausting, frustrating, devastating, and makes me want to give up. So why do I do it? Why care? Why not just pack everything up and leave because I’m 26 and should be out at happy hour, not spending my evenings researching ALK mutations and targeted therapies for a friend, or emailing Novartis for donation for a fundraiser. I do it because it is my duty. I was given a second chance, and I’m not going to fail the universe.

 

The Climb of Your Life

If you have ever felt too small to make an impact, then you need to get out of your comfort zone. You don’t climb a mountain by standing at the bottom and trying to jump to the top. You climb. Advocacy is a climb. You make small obtainable goals. You try. So I’m continuing to climb. I will continue to raise money for organizations like Lungevity and the Lung Cancer Research Foundation because they are funding live saving research. I will continue to educate myself on new treatment methods, new targeted therapies, combination therapies, mutations, and surgeries to have educated and informed discussions with doctors, researchers, survivors, civilians, basically anyone who will listen. This is my hobby. It’s a little different… it’s not knitting or reading but it’s mine.

 

Lets Do This. 

The truth is together we can make a giant impact, but only if everyone puts in effort. Lung Cancer isn’t going to manage itself. It’s our job to fund the bright minds and convince them this is worth working on. Lung Cancer is worth eradicating. My peers are worth saving.

Consider donating to Lungevity today (https://www.lungevity.org). Or joining me in the Breathe Deep NYC walk this Fall, or some of my other super exciting New York based advocacy events that are brewing (more on that later!). But most importantly, educate yourself. Know the facts, the stats, the sad truths and start telling people. End the stigma, and lets start having open conversations on this deadly disease and change the future.

 

Photo © Tony Powell. 2017 LUNGevity Gala. Mellon Auditorium. April 21, 2017

The Results Are In… My Scans Are…

CLEAN!

Nothing wrong with my good little lung. She is just perfect. In fact my doctor talked to me about my lung for about 30 seconds and then we discussed that we would both be going skiing this weekend.

I feel like one lucky one lung girl. So I’m going to explain what the process is, what these results mean, and end with some super awesome news. unnamed-3

Every 6 months I go to NYU Langone Hospital in NYC. I take this old scary elevator in the corner to the second floor and check in for a CT Scan. From there I wait about 10 minutes, and then I’m brought to the back, asked to change into a gown, and not use my phone for what feels like 100 years while they prep the machine. I’m taken into the room, lay on a table, in front of a giant machine that has a little circle where your body will eventually go. Once I lay down I put my hands over my head and they slowly move me into the machine. There is a little microphone and speaker and they ask me a couple questions and then have me do a series of breathing exercises while they take pictures of my mid section. The CT scan takes pictures in cross sections. Which means you see your body in a million different horizontal slices. They are looking for any shadows, holes, anything to light up, really whatever shouldn’t be there. Because I only have one lung, this gal is going to have to last me about 75 more years – it needs to be in perfect working shape. unnamed-2

Then I wait for my results! I usually get a bagel and walk to my Thoracic Surgeon (Dr. Bernard Crawford). He’s about 2 avenues and a block over, an easy 10 minutes.

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The Amanda Special / bagel with Bacon. 

Side note: The first scan I had about 4 weeks after surgery my mom and I went to the wrong location. And that 2 avenue and block walk was one of the hardest walks I’ve ever done in my LIFEEE. Now I basically run between the two of them. Man what a difference 2 years makes.

While I wait I basically text all my best friends and mom and they send me funny pictures and videos because they’re the best. Then finally I’m called to the back. They weigh me (gross), take my vitals and ask me how I am feeling. Dr. Crawford finally comes in and gives me my results. What he’s looking for is anything out of the ordinary in my good lung. As a reminder I had a carcinoid tumor in my right lung. This is neuroendocrine cells that multiple and stick together to cause mayhem. They are VERY slow growing and the only course of action is full removal with margins (this means take that stupid tumor out and everything around it that it touched / like my entire lung). We don’t know a lot about carcinoids. Why they grow, if they come back, do they have a pattern, is it because I eat too much cheese? We do know they don’t react to chemo therapy or radiation, there is no targeted treatment, and they are rather rare. Basically if the worst happened and another one popped up we’d want to know about it ASAP.

He tells me “You look good kid, she’s one healthy lung”, and then keeps me on scans once a year as opposed to every 6 months! This is AWESOME news. The less radiation the better!

Basically what this boils down to is I’m very healthy, I’m VERY happy, and I’m going to go get a beer. CHEERS.

 

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In Honor of Lizzie’s Lungs

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Young Adult Lung Cancer Survivors with advocate and former NFL player Chris Draft at the 2017 Hope Summit

The sad truth about working in Lung Cancer Advocacy is that sometimes your fellow survivors run out of time. It is always devastating, it never gets easier, and it is easily the worst part of dedicating your life to an unforgiving disease.

Last week we had a tragic death in our Lung Cancer community. I believe I can speak for all when I say it rocked us to our core. Elizabeth Dessureault was taken way too soon. Elizabeth was 27 years old, a young mother, teacher, and fearless advocate. Her blog  was a fascinating read, crafted with the utmost optimism. If anyone could put a spin on news, it was Elizabeth. I remember meeting her at the Hope Summit. It was brief, but so meaningful. It is not everyday that you see someone else who is around your age at this summit, I was thrilled when I noticed her survivor tag when she sat down at a table across from me. I tried to get up the nerve to speak to her the entire first day, but what do you say, “Hey, I also got dealt a shitty card, want to be weird Cancer friends?” Thankfully we were introduced to each other and spoke briefly about our situations. I remember sitting thinking, this girl is the real deal. A full shop selling Lung Cancer merchandise with profits going back to research, an award winning blog, and a ridiculous amount of knowledge of her disease and course of treatment. If anyone was taking control of her destiny, it was Elizabeth. We talked about my Lung Removal, and how she wanted her Lung removed as well to get rid of a tumor that was not shrinking with her targeted therapy. We talked about her desire to get treatment in Boston or NYC, and who to contact, and we talked about what its like to be young and in a terrible situation.

I thought of Elizabeth often. I kept up with her blog and Facebook posts. I regret deeply that I never reached out to let her know how inspiring I found all her advocacy work. She leaves behind a beautiful family and legacy. May she rest in peace.

If you find yourself with a spare moment please give her blog a read: https://fromlizzieslungs.com 

I continue now to fight with even more vigor. Lung Cancer needs more funding. It needs more research. And we need to make that happen. If you’re feeling inspired click this link and donate to Lungevity.                                              https://lungevity.donordrive.com/index.cfm?fuseaction=donate.general 

Together we can see a world where no one dies of Lung Cancer.

Stress, Anxiety,and Guilt…How to Deal with the Negative Side Effects of Your Body Betraying You.

It’s true….Cancer is betrayal. The body that you have treated reasonably well has turned on you. The life you once lead seems to be a lie, and you get to live the rest of your life knowing that you are the one in two humans who gets Cancer. It sucks. It’s a terrible feeling because you did nothing to deserve this and now you have to pay the price of being cut the raw deal. Lets talk about some ways of handling the mental crap that comes with Cancer.

I truly didn’t know I was that sick before I went to the hospital. Yeah I didn’t feel well, but when I found out that my entire right lung was collapsed and I was barely breathing I was SHOCKED. I joked about having a high pain tolerance, but the truth is, I was more scared that I didn’t inherently know that something was going that wrong inside of me. I didn’t look sick, I wasn’t bleeding, or weirdly colored, or overly tired. I thought I was just a normal, stressed, 24 year old New Yorker who wasn’t eating enough vegetables, or sleeping her 9 hours, with an incredibly taxing job. The truth was much scarier. I was slowly growing a tumor in my lung for SIX TO TWELVE YEARS. The means for potentially 1/4 to 1/2 of my life on earth I was sick. And I had no idea. And do you know what this translates to now? Stress. I stress that I still don’t know my body well. That at any moment that tiny ache in my shoulder could be something wrong with my good lung. Or I slept 9 hours and I’m still tired, and I think WHAT’S WRONG WITH ME? If I let these stressors get to me, I’d never leave the house, and I’d be calling my doctor ever 25 seconds. So I do yoga, I meditate, I take long showers, I drink water, I close my eyes and take big deep deep breathes. I call my mom, and my friends, and look at pictures of puppies online. There is no perfect answer every time, but even writing this out is helping. You have to find your way to deal with these stressors, but the best way is to remember that you have ten fingers, ten toes, and a beating heart so you can’t be doing that badly.

Now I kind of knew stress would be something I’d have to deal with. What I didn’t see coming was the guilt. The guilt that I scared the ever living crap out of my friends and family by accident. The guilt when I eat french fries, or drink too much wine when I was given a second chance at life and shouldn’t be treating my body like a dumpster. The guilt I feel when I ask a friend to walk a little slower because I’m out of breath. The guilt when a friend of mine passes away from the Cancer that spared me. It is truly worse than the stress. The guilt that I have for surviving something terrible is unlike anything I’ve ever felt. And truly the only way I have found to handle it is to remember that we all have problems, and if the world threw their problems in a circle you’d take yours back. I have to remember that I have 75 years left of my life (I’m planning on making it past the big 100). And I am allowed to have french fries and wine because they are good for your soul. My friends probably didn’t even think of my lung when I ask them to slow down. And my friends that have passed away have hopefully gone to a beautiful new place where there is no more pain or suffering.  The guilt is imaginary, and brought on by myself. Which means I can make it go away. And I work hard every day to get that poison out of my life.

At the end of the day, we all have troubles, and pains, and anxiety about just living. That’s what makes us humans. But we need to take it easy on ourselves. Take care of our minds and bodies and remember that we are always healing from something. I would never take back what has happened to me, it made me who I am today. And I’m a fool if I think this is the only curve ball life is throwing me. Until the next one, I’m going to enjoy my french fries, wine and Netflix on a beautiful Sunday in NYC and count all of my amazing blessings.

 

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A One Lung Reflection on 2016.

While most of the millennial generation is ready to watch 2016 die tomorrow. It wasn’t all bad for Lung Cancer. Here are some highlights from the last year.

First lets talk about early detection. There is a VERY cool new method being studied called a “Liquid Biopsy.” Doctors and researchers are taking sputum, blood, urine, or stool samples to see if we can spot DNA changes that would indicate Lung Cancer Cells. This would mean finding Caner at an earlier stage with a completely non intrusive method. Can you say LIFE changing?

The Government and more specifically Congress made a great stride this year in recognizing the vital importance of federal research. They increased funding in fiscal year 2016 for the National Institutes of Health (NIH) and the National Cancer Institute (NCI).

Now lets discuss some super cool drugs got approved this year.  Tecentriq (atezolizumab) from Genentech was approved by the FDA. This drug is for the treatment of urothelial carcinoma and metastatic non-small cell lung cancer. It was approved May 2016. Nivolumab (Opdivo) from Bristol-Myers Squibb and Pembrolizumab (Keytruda) from Merck have also been approved by the FDA for treatment in advanced NSCLC (Non Small Cell Lung Cancer). These drugs are all very interesting. Cancer cells have a very sneaky way of avoiding your bodies natural response to an invader. They often have a  protein called PD-L1 on their surface, which is almost like a Harry Potter invisibility cloak or a polly juice potion. Therefore the immune doesn’t see the Cancer, and doesn’t fight it off. These drugs help block this PD-L1 protein making the tumor visible so the immune system can do it’s job and fight the Cancer. These are called Immunotherapy treatments. In general these drugs are used after other methods of treatment have been tried.

The early detection, funding, and new drugs are helping extend lives. Now lets keep up the momentum and make 2017 even more exciting.

Wishing you all a very Happy New Year!

 

 

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