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A Reflection on Lung Cancer Awareness Month and for your enjoyment, a small rant.

November is always a very beautiful month for me. It is Lung Cancer Awareness month and I feel completely immersed in my advocacy for 30 perfect days. This year I had the Breathe Deep NYC Walk, The Hope Gala, I spent some quality time with Chris Draft and the The Chris Draft Family Foundation, I filmed a commercial and had so many other activities that make me proud to stand up for Lung Cancer.

My individual team was able to raise over $2,000 for Lung Cancer at the Breathe Deep NYC walk this year. And as a whole we raised an incredible amount at the Hope Gala. All in all it was a perfect month.

But lets talk about Lung Cancer for a minute. What else can we do? How else can we help? Let’s start by talking about the stigma.

Lung Cancer is still labeled a “Smokers Disease.” People assume those who have Lung Cancer have “brought it upon themselves”, and even worse “deserved this.” No one deserves to get a life altering disease, suffer, and especially die. Lung Cancer can happen to anyone. If you have lungs, you can have lung cancer. Whether you smoke or not shouldn’t be in the equation of who deserves this more. We need to stand up with our friends, family, and co-workers  who have smoked and have gotten Lung Cancer and think, this could have been me. I firmly believe this stigma interferes with our progress. It puts a shameful tone on Lung Cancer. It causes people to turn a blind eye, and judge without knowing the facts. We should never assume that someone’s lifestyle has had a causal effect on their health. You’d never turn to someone with Brain Cancer and tell them they got it because they thought too hard. I believe in karma, but not when it comes to health. Survivors did not bring this upon themselves, they do not deserves this, and deserve more respect than the general public is giving them.

Here are some things you should never say to someone who has been diagnosed with Lung Cancer:

  • Did you smoke?
  • Like never, not even once?
  • Didn’t you know that smoking gives you Lung Cancer?
  • Did your parents smoke? Brother? Sister? Grandparents?
  • Did you live somewhere with lots of Radon, I hear thats bad for you?
  • I have a friend who turned vegan/stopped eating sugar/takes really good care of their bodies and now she/he doesn’t have cancer, maybe you should try it..
  • How long did the doctors say you would live?
  • I read online that someone exercised every day and their tumor shrunk, you should probably be more active?

Instead, listen to the survivor, be supportive. Don’t judge, or project your own feelings about Lung Cancer onto them. If you are asked your opinion then gently give it. Offer to go to doctor visits with them so they are not alone, cook meals for their families, give good long hugs. But most importantly listen to what they ask for help with, and do those things.

Now take a deep breath.

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It’s the best time of year!

Breathe Deep NYC only comes once a year, and much like Christmas, and your birthday…it is a CELEBRATION!

What is it?

Breathe Deep NYC is a 3K walk in Manhattan where survivors, care takers, friends, families, researchers, and more get together to raise money and awareness for Lung Cancer Research.

That sounds amazing! Do you participate?

OF COURSE! And you should know that my team is called “Amanda’s Army!” Last year there were over 40 of us and we raised over $2,000! And I couldn’t have happened without YOU.

I don’t live in NYC? Can I still support?

Yes, absolutely! Every PENNY counts. Please consider donating to this wonderful cause. All proceeds raised go directly to Lung Cancer Research!

Hey, I live in NYC and I want to walk with you!

Amazing! Join my team on November 5th at 9AM at Hudson River Park, Pier 46, Charles Street and West Street. We will walk the 3K together, listen to touching guest speakers, drink coffee, and take in the beautiful view!

Alright I’m sold, where is the link to help? 

http://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.team&teamID=6620

Click this link and JOIN OUR TEAM!

 

Together we can live in a world where no one dies of Lung Cancer. Please consider donating, walking, or just sending well wishes as we embark on this journey!

 

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I’ve been diagnosed with Lung Cancer, now what?

Cancer.

What a scary word. I’m sure everyone reading this knows someone who has been diagnosed with Cancer. The National Cancer Institute estimates that “In 2016, an estimated 1,685,210 new cases of cancer will be diagnosed in the United States and 595,690 people will die from the disease.” Those numbers are well… terrifying. But I’m going to take the next 5 minutes of your time to help discuss what to do if you get the scary diagnosis.

“It’s Lung Cancer.”

Step One. After the initial shock settles in, start to learn as much as you can about your Lung Cancer. Some good questions to ask your doctor:

  • What kind of Lung Cancer do I have?
  • Are there any mutations?
  • Did you genetically test my tumor for these mutations?
  • What stage is my Lung Cancer?
  • Is there a targeted therapy for my specific kind of Lung Cancer?
  • Are there any promising Clinical Trials for my Lung Cancer?
  • What are my treatment options?
  • What is our course of action?

Step Two. Go find a resource that can provide a helping hand. You need to be your own health advocate, and the best way to do that is proper education. In my experience at National Hope Summits for Lung Cancer, Hope Gala’s and speaking with other survivors regularly  is they sometimes know more than doctors about the options for care. They are a WEALTH of knowledge that you should use. Some options of resources include:

  • Lungevity. They are an incredible organization that provides support, education, and a network of doctors, advocates, patients, and more that can help you make the right choices for your treatment.
  • Try another larger Lung Cancer Association like Lung Force or The American Lung Association.
  • Find a smaller network of support through your local hospital or doctors office. Call and ask if they can recommend any networks or support groups in the area.

Step Three. Continue to question. You have all the information there is to have about you Cancer, you have a network of individuals that make up a support system that provides strength, knowledge, love, and community. Now you need to continue to learn. Health Care is consistently changing. There are new drugs, new treatments, new methods introduced all the time. Stay up to date, ask your doctor “I read about this treatment in a Lung Cancer article, could this work for me?” If a treatment method is working, stay with it. When a treatment method stops working, find a new one. Having Cancer is almost a full time job. It is exhausting both mentally and physically in more ways than you could imagine. But continually asking questions, doing research, attending conferences, questioning decisions, and providing support to others will help not only to extend your life, but help doctors make discoveries for the future.

In the end. Take this diagnosis into your own hands. Ask for second opinions and feel comfortable with your course of action. Above all else, don’t be afraid to ask for support.

 

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You can live with ONE LUNG?

You can live with ONE LUNG?

Man if I had a nickel for how many times someone asked me this question…I’d probably be able to afford an apartment in New York City! Kidding, Kidding, I love my home and you can’t pay rent in nickels.

But YES, you can live with one lung! And in my case, you live well!

So…Can you tell?

Yup. Totally. But in the best way. I was very sick for about 6 months before my diagnosis. My lung was deflated, and circulating bad blood throughout my body (not the Taylor Swift kind). So now that it is removed, I feel .. well… LIGHTER. I no longer feel light headed, or like there is an elephant on my chest, or any sort of  intense shoulder pain.

So…Can I tell?

Yes! If I’m lying on my back, only my left side rises and falls. Same thing goes for if I’m laying on my stomach, the left side of my back rises and falls. Also, I have an amazing 13 inch scar down my back! It’s beautiful, and my “shark bite.”

So what’s in there now?

I bet you’re wondering what’s happening in the empty half of my body where an organ should be. Well, it filled up with fluid at first and then the fluid slowly seeped back into my body. So as far as I know, it’s just empty…. BUT want to know something super weird? My organs actually have SHIFTED in my body to the center. Everything moved over to “fill the void” it’s bizarre and totally natural.

Can you run?

No better or worse than I could before! Kidding, actually running is a touch hard. But I can’t tell if that is because I am a terrible runner, or if my lung has affected this. I can ski, do yoga, take kickboxing classes, swim, climb stairs, run to catch the 3 train, and carry all my groceries in one trip. So I’m going to assume I’m a terrible runner and that will not be changing anytime soon.

What else?

At the end of the day, I am so lucky to be sharing these weird facts with you. Sure this was not an ideal path my life took, but I will never be sad about what happened to me. I am incredibly lucky that my Cancer journey has ended with very little impact on my day to day life. Together lets make sure that this is everyone’s story. Go out there and take a deep breath.

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What is the Cancer Moonshot 2020, and why does it matter?

If you have been reading up on the latest in Cancer Research, you are bound to come across some information regarding The Cancer Moonshot initiative. I have a limited scientific background, but in this blog entry I am going to attempt to describe what it says, why it’s important, and how it will help those diagnosed with Cancer, and those who will be diagnosed in the future.

What is it?

The Cancer Moonshot Initiative was first announced during President Barack Obama’s State of the Union address in January 2016. According to cancer.gov “The initiative—led by Vice President Joe Biden—aims to make more therapies available to more patients, while also improving our ability to prevent cancer and detect it at an early stage.”

This sounds great, but how will they do it?

First and foremost, money. This is a one BILLION dollar initiative to jumpstart research. Doctors will be conducting further research on new and old therapies that include chemotherapy and radiation treatments, and more targeted methods. We now have a bit more insight on what Cancer is, how is spreads, and what is effective in treating it. But one of the biggest advances has been the ability to activate our own immune system to attack the Cancer cells. This method is called Immunotherapy, it is already showing promise in many Cancers. Including the well reported turnaround for Jimmy Carter who was treated with a range of therapies including pembrolizumab, an immunotherapy drug.

Why is it important to find cancer early? 

Early detection, Early detection, Early detection. In my last post I discussed “asking the scary question.” If Non-Small Cell Lung Cancer is caught early (Stage 1), your survival rate is 49%. The later the stage, the more your survival rate decreases all the way down to a less than 10% for Stage 4. Those numbers are terrifying, and uncomfortable. Making an effort to research and improve our ability to find Cancer early clearly translates to saving more lives. This is a no-brainer. I am going to do an entire blog post on what methods are being developed to detect Cancer early, stay tuned for that!

Why does it matter to me?

While I will admit, I enjoy reading about the research being conducted the best part of this plan is that it actually takes into account the patients, not just the cancer. One of the coolest aspects is the commitment the Task Force has made to making sure patients are knowledgable about their treatment methods, combination therapies, and options. On whitehouse.gov the Fact Sheet states, “The National Cancer Moonshot will work to accelerate these research efforts and break down barriers to progress by enhancing data access, and facilitating collaborations with researchers, doctors, philanthropies, patients, and patient advocates, and biotechnology and pharmaceutical companies. ” This means that this initiative wants to make sure that every patient, doctor, advocate, care giver, drug company, has access to all the data available. We will be given the tools to make an informed decision on how to fight our own Cancer battle. I love this.

 

In the end, I have touched on only a few aspects of the Cancer Moonshot 2020. The goal is clear: scientists, the government, patients, loved ones, drug companies and more are all ready to tackle Cancer and find a long term treatment by 2020. No longer will the words “I have Cancer”, translate to “I know what will kill me”. Cancer will become a manageable disease treated with a multitude of methods that are proven to work. If you’d like to know more please check out,

http://www.cancer.gov/research/key-initiatives/moonshot-cancer-initiative

https://www.whitehouse.gov/the-press-office/2016/02/01/fact-sheet-investing-national-cancer-moonshot

Now that’s what I call HOPE.

 

 

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Why Should You Care About Lung Cancer?

When I heard I had a tumor in my lung, my first thought was:

“Oh My God, I have Lung Cancer.”

I was not well educated on Cancer, like most of us, and assumed wherever they found the growth, that’s what you got. Well man was I wrong. I had a neuroendocrine tumor. There is very little research on what these guys are, why they grow, and why they just need to be plucked out. But regardless, my lung was taken. I could have chosen to be an advocate for neuroendocrine tumors,  young adult cancer survivors, other lung and breathing disorders, but I chose Lung Cancer.

When I was in the hospital, I keep trying to do my work from home. It did not work out so well, my boss told me to find a hobby to occupy my time as I recovered. So I started researching Lung Cancer in general. I was SHOCKED with what I found… because it was almost nothing. Then I stumbled across Lungevity, the largest non-profit Lung Cancer organization, and I was even more shocked. Lung Cancer is scarily under funded and represented. I’m going to spew some facts at you (all facts from https://www.lungevity.org) :

  1. More people will die from Lung Cancer than Colon, Breast, and Prostate Cancer COMBINED.
  2. ONE in FIFTEEN people will be diagnosed with Lung Cancer in their lifetime.
  3. Lung Cancer kills almost TWICE as many women as Breast Cancer.
  4. As many as 20% of the people who die from Lung Cancer in the United States every year do not smoke.
  5. The five year survival rate for anything past an early stage of detection (where is spreads to other organs) is 4%.

It makes me sick to my stomach to even write these today. Lung Cancer is killing our friends, family members, co-workers, neighbors, and it is still grossly under researched and funded.

The good news is YOU can help. And here is how:

  1. Spread Awareness! Lung Cancer is NOT a smokers disease, if you have lungs you can get Lung Cancer.
  2. Raise Money through one of Lungevity’s BREATHE DEEP walks. They are all around the country. Walk and raise money for a friend, family member, or just an amazing cause that needs your help.  https://www.lungevity.org/events/breathe-deep
  3. Be your own health advocate. If you have a cough that won’t quit, you are feeling weak, and have been getting bouts of pneumonia, asthma attacks, and bronchitis for more than a couple weeks. GO SEE A DOCTOR. Ask the scary question, “Could I have Lung Cancer?” This question could save your life. The survival rate for early deduction is over 50%. ASK THE SCARY QUESTION.

Now go save some lives, raise awareness, raise money, and educate yourselves and others on Lung Cancer.

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My Story

I figured I would start with my first post with telling you a bit more in depth about my personal journey with lung cancer.

2014 was a very rough year for me, I was consistently sick with a cold, pneumonia, the flu, bronchitis, I could not catch a break! August rolled around and while my cold symptoms subsided, I was unbelievably tired at all times. I looked like a giant marshmallow and my skin was almost grey. At work everyone would tease me because I was exhausted and had this grandpa wheeze in my voice. (We all thought it was VERY funny, we learned very quickly that it was not). On August 25th, 2014 I picked up the phone to answer a call and my voice completely went out. It was like I was hit with a surprise bout of laryngitis. I was holding my shoulder because I felt a sharp pain and waddled to my boss’ office. I walked across the street to a City MD and was immediately rushed into a room. When you tell a nurse you are having chest pain and shortness of breath they do not stop until you are receiving an EKG so they can make sure you’re not having a heart attack. Normally I wouldn’t be happy with this diagnosis, but the nurse read the results wrong and I was rushed to the hospital with a “heart attack”. Being a true New Yorker, I knew the traffic would be terrible and it would be way easier to walk the 6 blocks. So I took my bag, watched the ambulance pull up and walked 6 blocks south and 2 avenues over to NYU Langone Hospital. Little did I know when I walked through those doors, that I would walk out with one less organ.

In the emergency room, I was given another EKG and a heart attack was ruled out. I was rushed to radiology to have a CT scan where I was told my entire right lung had collapsed. I remember the nurse telling me, it could be a mucus clot, a blood clot, or some sort of mass. I was taken upstairs to my new home for the next week and pumped full of antibiotics. The next week was a rotation of Physical Therapists banging on my back to get out my mucus clot, plus a lot of jello and Law and Order SVU. Finally nothing was improving and a pulmonologist sent me to get a hard bronchoscope. I would not wish this on my worst enemy, it was ZERO percent fun, but it was effective. As I was given a popsicle, put in my own room on the recovery floor and given a dvd to pick out I knew something was wrong. In walked 4 nurses, and my pulmonologist.  I was told they found a mass. I said, “Great, A mass of what?” They chuckled, I chuckled and then realized by mass, they meant tumor. I had a tumor in my lung, not a mucus plug, but a tumor. I was in shock, I had previously told my parents to please stay in North Carolina, I am an adult and could handle a little mucus….now that we were working with the C-word, up came the parents. I was rushed and given a more invasive bronchoscope to determine what kind of tumor. When I woke from the procedure I was told my tumor had to be taken out immediately. It was a carcinoid, and I was very lucky that it wasn’t something worse. This fell right on Labor Day weekend, and because like school kids doctors don’t work on that weekend, my emergency surgery was on hold until Tuesday September 5th, 2014.

On Monday September 4th, 2014 I remember saying goodnight to my parents and sitting in my hospital room waiting for my surgery in the AM. I was watching American Ninja Warrior, and it was the first time a girl had made it to this round. I watched and remember saying if she makes it through this I will keep my lung. (VERY stupid in hindsight). She fell about 2 seconds into the course, I turned off the tv and closed my eyes. The next morning I was taken to surgery. After 4 hours I came out tumor-less, cancer-less, and lung-less. I spent the remainder of the week in a step down unit being bathed by amazing nurses, visited by the best friends a girl could ask for, and having my parents by my side every single minute. (Shout out to the BEST parents in the world).

I was taken out of the step down unit, to a regular room with an amazing woman named Dorothy. She had just had heart surgery and we would talk and watch tv and just heal together. When I was finally released I went back to my house to begin the real process of getting better. It took me 5 weeks before I was back to work. 7 weeks in total to loose my lung and heal. I was running a mile 54 days after my surgery. Today I forget most days about my one lung, but I never forget about how lucky I am that I was given a second chance. Many people with a diagnosis of lung cancer don’t get to just have it taken out and live a very long life. And I hope to live in a world where my story, is everyones lung cancer story.

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