Samantha’s Story – That’s me!


It all began lophoto (16)nger ago than I probably know about. I graduated from Georgia State University with a bachelor’s degree in 2002.  I moved from Atlanta to St. Simons Island, GA in 2006.  I was the Managing Director of a very prestigious hotel and restaurant, working long hours but making a decent living.  I had my career, my daughter, and we were living our little dream on this small island in South Georgia.  Life was good.  My happily ever after began to crumble just before my 33rd birthday in October 2012.

I thought I had a terrible sinus infection.  I kept getting migraine like headaches, so my local doctors kept prescribing various antibiotics and pain meds for about a month.  The night I first coughed up blood, I was reading a bed time story to my daughter (7 years old at the time).  I knew then, something was wrong, seriously wrong.

A few days later I started seeing flashing lights and my depth perception became distorted.  A trip to the ER gave me another sinusitis diagnosis and my PCP was getting me a referral to an ENT.

I decided to go visit my family in Atlanta, GA for Thanksgiving 2012.  My headaches were ever present and I was taking very strong pain pills every 3 hours, even throughout the night, waiting for the call to get in to an ENT.

The Sunday after Thanksgiving (November 25, 2012), my daughter and I were supposed to drive back to St. Simons Island.   It’s about a 5 hour road trip.  Unfortunately, the headache had become unbearable.  This is when I asked my mom to drive me to Henry Medical Center in Stockbridge, GA.

The hospital did a CT scan and came back with these words, “I wish I had better news, but we see a grey area in your brain.  We’ve called Piedmont Atlanta and there is a neurosurgeon that can see you today.  We will have an ambulance here within the hour to transport you”.

I was on morphine for the pain, but it wasn’t putting much of a dent in it.  I was begging for my father to bring my daughter to the hospital before they transferred me.  I needed to see her again, to tell her how much I loved her.  I was afraid it was going to be the last chance I had to say it to her.  She got there as they were loading me on the ambulance.  She was crying and I just hugged her as tight as I could and told her that I would always love her.  She begged to come with me, but we all knew that wasn’t going to happen.

That night and the next day were a blur.  I was on so many pain medications that I don’t remember anything.  The morning of November 27th, 2012 I had a craniotomy to remove the tumor.  Later on that day, I got the news that would turn my world upside down.  My life, as I knew it, would never be the same again.

“The tumor we removed from your brain originated from somewhere else in your body.  We are fairly certain, it came from your lung and you have Stage IV Non Small Cell Lung Cancer”.   It was followed by, “this is not curable, but can be treated”.  Of course, I wanted to know how much time I had left.   The response, “based on what we know now, and everyone is different, my best guess is 12-18 months”.

What?  Why?  I’ve been through all of the stages of grief.   I think Anger was the worst.  It wasn’t fair.  I’m too young.  I have a little girl that needs me.  At most points now, when I reflect and talk to God, I get an overwhelming sense of peace and love.  These are the things that get me through the day.

North Carolina 050302014 059My ex and I decided it would be best to be totally honest with our daughter, Karley.  So, after my gamma knife radiation and about two weeks in Atlanta, I returned to St. Simons where her dad had been keeping her with him.  It was the most difficult conversation I’ve ever had.  How do you tell your child that you have cancer that isn’t curable?  I don’t break promises.  She mostly sat quietly while we explained that this cancer may take my life, but I promised I would never give up.  That is a promise that I will never break.

Right before Christmas I discovered I tested positive for the EGFR mutation.  This meant I could take Tarceva, a one a day chemo pill.  I had opinions from Mayo and MD Anderson.  MD Anderson discovered I had cancer throughout both lungs, the mediastinum, and lymph nodes.  The cancer in my brain had been removed and any other trace, eradicated by the radiation.  Surgery or radiation to the chest was not an option at this point.  Maintenance of the disease was the goal.

After being on Tarceva for nearly a year, my PetScan showed that only one tumor remained, the primary.  It had also tripled it’s metabolic activity and progressed in size, indicating this tumor had built a resistance to Tarceva.  My oncologist radiated my chest (which my insurance denied claiming it wasn’t medically necessary), but it was worth it!  My last two PetScans haven’t detected active cancer.  And, this month is the 18 month mark!  We had no choice but to act fast.  We were trying to save my life.  I’m not sure that was my insurance company’s intent.  Either way, if you aren’t battling cancer, you’re battling insurance companies.  It goes along with the territory at this stage.

I’m feeling great.  I will be on Tarceva forever and am told one day the cancer will build a resistance and find a way around it.  I’m hoping by then, there will be newer and better treatments and praying for a cure!  There are side effects, but they are manageable.   I’m blessed to have an oncologist that didn’t wait on a referral!

Lung cancer is a horrible disease.  I’m still learning to live with it.  My daughter is amazing and has handled everything with such strength and grace.  Of course I have my bad days, but who doesn’t?  My family, friends, church, and community have been so supportive. 

I never knew a healthy young woman could get lung cancer.  But, I was diagnosed during Lung Cancer Awareness Month.  I’m pretty aware now! I am currently serving on the Atlanta Free to Breath 5K fundraiser event this August.  I was one of the 5 survivors that walked it last year.  This year I will attempt to run some of  it.

I have a blog (www.samlmixon.blogspot.com) that has my entire story from the beginning.  This is the short version, but I will  post updates here as well.  I’ve not only posted about cancer on my blog, but about living….because while I’m here, that’s what I plan on doing.  

Julia’s Diagnosis

A wise person once told me that it doesn’t ever get easier, you just get stronger.

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We lost our dear friend, Julia, at the age of 27 on April 18, 2013. It still feels completely unreal to type that because it’s been more than a year but it still feels like she couldn’t really be gone. I often wonder if that feeling will ever go away. Part of me hopes it doesn’t, is that sick? I don’t know, and to be frank, I don’t care either because it is that feeling that keeps her in my thoughts every single day.

I’ve created this blog as an outlet to share Julia’s story and to share the many stories of young lung cancer. They are stories that are often unbelievable and very sad but it is my goal to show the incredible strength and resilience of those stories. To shed some light on the fact that it is not only smoking that causes lung cancer but, often times, it can be a result of the environment we live in – exposure to radon, asbestos, air pollution. And many times, as I am sure a lot of you who have been through something like this can attest to, it is sheer bad luck – shitty, horrible, no good reason, why the hell did this happen to me or my friend or family member, BAD luck. There was nothing that could have prevented it, no way of knowing that it would happen to them and that was the case with Julia.

Julia was originally diagnosed with pneumonia. She didn’t have health insurance at the time and was prescribed antibiotics by a doctor at an urgent care facility. The meds didn’t work and Julia was not getting better. Just before Christmas, she started coughing up blood so she decided she would go back to urgent care if it didn’t get better. On Christmas Day in December of 2011, Julia’s best friend, my twin sister, Rachael, got engaged, with Julia creeping in the background taking pictures of such an incredible moment. It was such an incredibly happy time, filled with so much love and joy and excitement. We had no idea that Julia was about to face one of the worst words in the English language – cancer.

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When she returned to urgent care, a chest x-ray revealed a mass in her lung. She was told to see a specialist but, because she didn’t have health insurance, she wasn’t able to see one right away. In March 2012, she was finally able to get into see a pulmonologist (I think) who did a biopsy. It was cancer, they just didn’t know what kind yet. More scans and tests would reveal that there were also lesions on her liver. It wasn’t just cancer, it was stage 4 small cell carcinoma, a very rare and very aggressive form of lung cancer. Cue hyperventilation, uncontrollable shaking, and floods of tears. I still remember exactly where I was when I found out. I was outside of a hair salon about to get my hair cut, and when I told the hair dresser what had just happened, she promptly told me the story of how her ex-boyfriend died just 6 months after being diagnosed with lung cancer. I wanted to rip her face off.

The very first thing we did, of course, was hit the internet which was like a sucker punch to the gut. When you do a Google search of “stage 4 small cell carcinoma”, the very first link takes you to a page titled “Small cell lung cancer survival rates by stage”. Stage 4 small cell has a 2% 5-year survival rate. No, you didn’t read that wrong, and that is not a typo – TWO FREAKING PERCENT. We told ourselves many, many times over the next year that Julia was going to be a part of that 2%. She was young, healthy, and had every reason in the world to survive, and she refused to let the cancer take over. So she began the fight of her life – with all of us, her friends and parents – doing everything we possibly could do to help her. My sister even flew out from Amsterdam, where she was living at the time, to go to Julia’s first round of chemo with her. Julia may have been an only child and, having emigrated from Poland with her parents when she was a young, she may not have a lot of family nearby but she was never alone. If she was going to fight this disease with everything she had, then we would be right by her side.

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The rest of Julia’s story will unfold over time, and I will be reaching out to my sister and friends to tell other parts of it in their own words. I will also be posting stories of other young lung cancer fighters, in their own words and in the words of their caregivers with the hope of showing the many sides of this disease. One in three people know someone who has or has had lung cancer, so if you are interested in sharing your story or if you are just looking for someone who understands a little of what you are going through, please reach out! Like Julia, you are not alone.

Allow myself to introduce…myself.

My name is Julie Cremata. I am 28 and, after a recent relocation from San Diego, am currently living in the Bay Area with my husband, Mike, and my dog, Marge. Like many of you, I am a friend, a sister, a daughter. But I am also something that not many people my age have even been exposed to… I am a lung cancer advocate. Some might assume that I lost my mother or father or grandparents to the disease, but I haven’t. I lost someone much younger than my parents and grandparents, someone you would never expect to get lung cancer. Many people are shocked to learn that, when we were 26, a very close friend of mine was diagnosed with lung cancer. She would later succumb to the disease at the age of 27 (yes, 27) and that is how I became involved in lung cancer advocacy.

I will get into Julia’s story more later but I think it’s worth sharing the beginning of my advocacy story. About a week after Julia’s funeral, I decided that I needed to do something, to do my part to make sure no one ever had to go through what Julia went through ever again. At the time I didn’t know what I was searching for, but a Google search for “lung cancer San Diego” revealed the San Diego Free to Breathe 5K run coming up in just a few months. Having never run a 5K before, I decided to sign up before I could talk myself out of it. A couple of months later, I began an 8-week training session thanks to the Couch to 5K app, with the goal of running the entire time. I asked friends and family to either join me or donate to the cause and, thus, began my fundraising mission.

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On August 17, 2013, I ran my first 5K in memory of Julia and I ran the whole time (with the exception of two 30-second breaks, but hey, who’s counting right?). I even spoke at the opening rally and shared part of Julia’s story. The best part was that 22 other people joined my team in San Diego and 9 others ran with us at the same time internationally in Paris, London and Amsterdam. We raised well over $1000 for lung cancer research and I knew I couldn’t stop with that event.

Team Julia Gruca Amsterdam

Team Julia Gruca Amsterdam

Team Julia Gruca San Diego

Team Julia Gruca San Diego

Just over a month later, I attended the Free to Breathe Advocacy Summit in Dallas, TX where I got the opportunity to learn an incredible amount of information about current lung cancer research, future research, and ways to be an effective lung cancer advocate in my community. I met 75 other advocates from all over the country and am friends with many of them to this day. It was an incredibly moving and therapeutic experience and it has since provided an incredible amount of motivation for my advocacy efforts.

Since then, I have held many fundraisers, met a ton of people, and have tried to do my part to raise lung cancer awareness but, in my opinion, I haven’t done enough because the lung cancer survival rate hasn’t budged and the number of young people getting diagnosed with lung cancer is increasing! This blog is going to be my way of helping increasing awareness so people realize that lung cancer is not a smoker’s disease as many people assume. It is a HUMAN DISEASE and it kills more people every year than breast, colon, and prostate cancer combined! The reality of it is, if you have lungs then you can get lung cancer. Period.

I hope that this blog serves as a way for its contributors to “get things of their chest” or to inform the masses or to just feel like they are part of a community that cares about them and what they are going or have gone through. Please share and comment as much as you would like, the only thing I ask for is that each contributor is treated with respect. I have no idea where this blog will take my on my lung cancer advocacy journey but I can’t wait to find out! Thanks for joining me!