Welcome to LUNGevity's Blogosphere!

In this space, you'll find the voices of LUNGevity's constituents: lung cancer patients and their loved ones, caregivers, scientists, event coordinators and participants, and anyone else who's interested in our progress in reducing lung cancer's mortality rates.

No Longer Alone

September 15th, 2014 - by admin

Alisa was too busy caring for her mom, who was fighting cancer, to pay any attention to her own health. She was a single mom to twin boys, her mother’s caregiver and was working full time.  Alisa just couldn’t worry about the pain she was feeling in her knees.  After her mom passed away, she eventually focused on her health again and went back to the doctor; Alisa’s knee pain had gotten worse.

Another doctor in the office suggested that she get a chest x-ray to rule out cancer since her mom just passed from it and apparently some lung cancer patients get pain in their bones from a hormone a tumor can excrete.  The x-ray didn’t rule out cancer.  Alisa was diagnosed with stage 3 non-small cell lung cancer.  The same kind of cancer that had just taken her mother’s life.

“I had a lobectomy (middle right lobe removed) and then adjuvant chemo treatments – 6 cycles of taxol/carboplatin, followed up with Integrative Care. I went to all my chemo treatments and doctor appointments alone, before I had to pick up my twins from school.”

Alisa was afraid for the future of her twin sons.  She felt isolated and alone after her diagnosis and didn’t have a large support network.

Social media didn’t really exist at the time of Alisa’s diagnosis and treatment in 2000, but eventually she found the Lung Cancer Support Community, the message boards at LUNGevity

“The message board was a lifeline for me, not just for the emotional support but for the informative information and recommendations passed on by other survivors and caregivers. I was so alone for years … it would have made a world of difference to me if there were the LUNGevity brochures in the various medical offices.  I can’t imagine my life if I didn’t later stumble across Katie and that message board on my own.”

When asked what advice she would give to someone newly diagnosed Alisa says;

“Make sure to get a second, or even a third, opinion – there is no rewind button.  Do not get stuck on statistics as there are many survivors who were told nothing can be done yet they have been thriving for years.  I would also give the information to LUNGevity’s website and encourage them to reach out.”

“The best thing about this experience is attending LUNGevity’s national Hope Summits and witnessing the amazing strength and compassion of my fellow survivors.  So many people that have touched my heart in an enormous way would not be in my life now if I hadn’t gotten lung cancer.”

Alisa is a 14 year lung cancer survivor.  She worries about a recurrence or new primary and, of course, Scanxiety.  She worries for her children, as many of her family members were diagnosed with NSCLC.  To combat those fears she volunteers her time and energy raising awareness about the disease at LUNGevity’s Breathe Deep NYC.

She wants to let others know they don’t have to walk the journey alone.

alisa

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A Strange Place to Live In

September 14th, 2014 - by admin

“If I had a gazillion dollars I would fund massive education programs for oncologists, getting them up to date on stage IV so that I don’t have to hear any more stories about people being sent home to die. I would fund all the lung cancer researchers (and other cancer researchers, because I think more will be done if they work together and focus on drivers rather than just the location of the primary). Then I would set up funds for every lung cancer patient and their families so that they could focus on getting well instead of money.”

That’s what Tori Tomalia would do if she could help the fight against lung cancer without financial restriction.

The mom of 3 small children was shocked when she was diagnosed with lung cancer in May of 2013.  She was young and didn’t have any risk factors. It was the farthest thing from her mind.

Tori had been having difficulty breathing.  She had been getting worse for several months and her symptoms were attributed and treated as a series of chest colds, then asthma. She was given many medications but she kept getting worse.

Finally, it was recommended that she have a CT scan, which showed a huge growth in her left lung. A biopsy determined it was malignant. Subsequent scans revealed she had many bone metastases throughout her spine, hip, rib, shoulder blade, and one in her liver. Her diagnosis was stage IV, adenocarcinoma, non-small cell lung cancer.

After the initial shock, Tori began to advocate for herself.  She pushed for genetic testing and is now on a targeted drug called, Xalkori. She experiences stomach issues and fatigue from the drug.

“This is a strange place to live in. I feel relatively decent but I have terminal cancer. Having cancer has made me even bolder. I have always been pretty outspoken, but now I feel like, hey, I have terminal cancer, this is no time to pull my punches. Or, as a friend said, “Stage IV is no time to be timid.” It has also helped to put time into perspective. I am more likely to do the things I want NOW rather than waiting for the right time or whatever.”

Tori says the worst thing about this experience is thinking that her kids may lose their mom.  She feels terrible for her husband and what he is going through and says she has a lot of guilt.  Keeping busy helps her to quiet some of those thoughts that run through her mind.

She speaks frankly about her experience on her blog, over social media (twitter, FB, online support groups) and tries to educate people about lung cancer and dispel some of the myths. Tori participated in the #WhipLungCancer challenge and will even be speaking at a lung cancer walk next month.

When asked what advice she would give to someone newly diagnosed, Tori said:

“Have hope. And get tested for mutations. Seriously, even if your doctor said they tested, ask for which one. They wouldn’t have found mine if I hadn’t asked, and I might be already dead because of that.

There is a lot of exciting research coming down the pike.

My goal is to stick around long enough to see the results!”

tori

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A Survivor Mindset

September 12th, 2014 - by admin

by Tracy Anderson

When people hear that I am a lung cancer survivor (5 years cancer free come Dec. 17, 2014) and the stage it was discovered, they look at me as if I am a big foot… you hear about them but never really see them in person.

I guess it makes sense since the 5 year survival rate stands somewhere between 15-16%, depending on which information you read.  I usually end up discussing the facts about lung cancer and try to rid us of the ugly stigma our disease carries.  Raising awareness wherever I go.  The thing is, whenever I discuss my survivorship, I am always asked, “I thought no one survives lung cancer… how did you do it?”  I usually joke about it by saying it was the Jewish Penicillin (Homemade chicken soup from scratch) I ate.  It cures everything from the common cold to cancer.  I think it may even regrow small severed limbs, but I haven’t actually tested that theory yet.  But my mom and I both couldn’t eat anything but that soup during our treatments and we are both still here.  Oh, did I fail to mention that my mom is also a stage 3B Non-small cell lung cancer survivor?  12 years for her.   Unfortunately her father was also diagnosed but only held on for about 18 months back in 1975.

Anyway…How did I make it?  Of course the care I received from my doctors was vital to the success of my treatment.  The techs who administered the radiation and the nurses who cared for me day and night in the hospital were like angels.  The poisonous Cisplatin, and Etoposide running through my veins was a necessary part of my survival, but just as crucial, I am convinced, was my attitude toward the whole situation.  It was my mindset; my personality that got me through the toughest of times.  What was so great about my outlook and attitude that made me stronger than the cancer that tried to consume me?  Well, part of it may be part of my DNA, and part of it may be my upbringing.    You see, when I was told of my lung cancer, I didn’t panic, cry, or ask why me.  .  I just shook my head and with a half laugh, looked at the doctor and said, “of course I do.”   I never really thought I wouldn’t make it.  I remember thinking, “Oh, great… I am going to be sick as hell and I am going to lose my hair.  OMG… MY HAIR!!!  What an inconvenience this is going to be!”  When we discussed the treatment options and the doctor answered my father’s question about my chances, I said, “I don’t care what # you throw out there, screw you, watch this.”  My doc smiled and said, “We need to get you into treatment ASAP while you still have this attitude!”  I mean, if my mom beat it, I was going to as well… I couldn’t fail at something she succeeded at… NO WAY!

Now about this attitude… I am a competitor.  I was a hard core athlete…still am mentally.  I would always play to win… If you don’t, you may as well stay home.  I played softball at a very competitive level and traveled across the country doing so.  I learned at a young age to never give up no matter how many runs you may be trailing.  We came from behind many times to win the game against all odds.  The game isn’t over til the last out of the last inning is made.  I remember playing tournaments… 6 games in one day playing every inning in 98 degree weather, as the catcher!  I was exhausted, both physically and mentally but I knew how important this tournament was and where it would bring my team.  I fought on and we made it to the National tournament!

As in any sport, activity, or just living life, there is a risk of injury, illness, or fatigue.  I was trained to, “Make the play, cry later”.  This is something that my dad instilled in me on the softball field when a ball took a bad hop right into my face when I was just starting out.  I was to make the play first, and then cry… if I didn’t the runners would continue to run and score on us and we would lose.  Plenty of time to cry after the play has been made.  Yeah, it sounds rough, but it made me stronger and a damn good softball player.

As I got older and met new obstacles or challenges, I found that saying to be beneficial.  It gave me the push or the drive to continue on and get the job done no matter what the situation.  It worked when I was working out, writing a term paper at 3am on no sleep, going to work with the flu, moving on after a break up, and what I consider “THE BIG GAME”.  My personal Superbowl or World Series.  That’s right, my fight for my life against Lung Cancer.  I believe I was being trained to fight this horrible disease and to help others with their battles too by playing softball and training to be the best I could be.

It is important to have a strong body when preparing for a battle.  You will do well with a young, strong, healthy body, but if your mind is weak, you will only last so long.  You need a strong mind as well… maybe even more importantly.  Good athletes train their physical body, but the best athletes, who stand the test of time, also train their minds, hearts, and souls.

I remember one night in particular where I had had enough.  I was so weak, so tired, so… done.  I really think that if I could’ve made it to a tall building with an open window or roof access, I would have considered jumping.  But then I heard my dad’s words screaming at me in my head.  “MAKE THE PLAY, CRY LATER!”  I couldn’t let him down… my “team” AKA: family.  I had to win this game… if I didn’t, not only would the season be over, but I would be permanently retiring.  So I took a deep breath, and “brushed myself off” and continued on.  On my bad days, I would also hear my mom… “tomorrow will be better.”  When it wasn’t, she would tell me again that tomorrow will be better.  Eventually she was right.  I just had to ignore the pain of today to look for the relief that “tomorrow” would bring.  I am so happy my tomorrow came.

I really believe that my mental game is a huge part of the reason I am still “playing” this game called life along with the support of those who love me.  Being that my mom had been there before me, I knew I could trust her when she said all will be fine.  She did it… why couldn’t I?  So, as my mom and I say, “Dying just wasn’t an option.”  Once you believe it, you can achieve it… BREATHE DEEP, BELIEVE, AND LIVE!!!

tracya

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Jill Feldman

A Permanent Reminder

September 3rd, 2014 - by Jill Feldman

Never say Never…

Admit it; we have all declared at one time, in some way, “I will never…!” I know I have. There are many things I said I would never do that have been refuted, but one thing I said I would never, ever do is get a tattoo. I didn’t judge people who had them, but they weren’t for me. Tattoos are a lifelong commitment and unlike bell-bottom pants and baggy sweaters, tattoos cannot simply be thrown in a giveaway pile and be forgotten about!

As we all know, life is all about change, and I’ve had some life-changing experiences that have led me to a change of heart about tattoos. In fact, one of the things I didn’t like, the permanency of a tattoo, is what led me to getting one…actually, I got two tattoos ~ Go big or go home!

The first time I thought of getting a tattoo was five years ago, when I was diagnosed with lung cancer. I would casually mention it in conversation, but I wasn’t committed and didn’t even know what design I wanted to get. And then, not by choice, I got my first tattoos in May, 2013. They are boring, ugly, and not what I would choose – they are tattoo markings for the radiation I had on one of the cancers in my lungs!

I am ok with the radiation tattoos, the scars I have from surgery and the marks left on my skin from Tarceva (the targeted therapy drug used to fight my lung cancer) — I earned every one of them and wear them proudly, but they weren’t my choice. Lung cancer, indirectly, created them. My defiant-self decided that the next marks on my body were going to be my choice; what I want and where I want. I was back to thinking about getting a tattoo.

Fast forward to last May. I was at LUNGevity’s Hope Summit in Washington DC where over 100 lung cancer survivors came together to learn, have fun, provide support and share hope. Hope is a word that I never used to associate with lung cancer because in my experience there was only false hope, or no hope at all. But as LUNGevity has grown and advancements in research have been benefitting patients more and more, I have started to believe that there is hope and I have started using the word more.

Hope Summit 2014 really opened my eyes and my mind to hope, and it came at the perfect time. I was finally in a good place accepting that my Stage I lung cancer had evolved into a Stage 4a diagnosis. I looked around the room in awe as I listened to survivors tell their stories.  I watched the interaction among survivors and caregivers.  I heard about the latest advancements in research.  I felt the virtual (and often real) hugs and I embraced the support — I experienced hope for the first time. Hope had a whole new meaning to me.

Hope is a powerful force. Hope means different things to different people at different points in their journey. The hope I saw transpire in that room was real. It wasn’t about wishing for a miracle or dreaming of a cure. It was hope that lights the way during dark times. Hope that means being realistic but not giving up. Hope that means having faith and believing that nothing, even cancer, can defeat the human spirit. Hope that provides the strength to get up every morning and face each day. It may not sound like much, but after what we have all gone through, it is a lot – Hope is everything!

So, at Hope Summit I started thinking more seriously about getting a tattoo — a tattoo about hope. As long as I’m realistic, there is always hope, and I never wanted to forget that feeling. A tattoo that simply said hope, with the ‘e’ being the cancer ribbon, would be a permanent reminder, and a bold, positive response to the physical and emotional marks lung cancer has left on my body.

I also started thinking about a second tattoo — the tree of life. I wanted to incorporate my mom, dad and aunt (whom I lost to lung cancer) and Jason, Jack, Shae, Meg and Maya (my husband and kids) – all of whom inspire me to fight every day. Like a family tree showing deep roots and branches that connect to me, with a symbol (a leaf) for each person, this tattoo would symbolize love and eternal life.

My kids are 17, 16, 14 and 11 so I thought about what their response would be (you would never approve of us getting a tattoo…) and the message I would be sending them. When I got the response I suspected, I simply said that they were right; I would not approve of them getting a tattoo. I told them that they are far too young to know what they would want forever or to understand the impact of a permanent decision. I explained that at my age, with my life experiences, I know this is something I want for the rest of my life.

I got my tattoos two weeks ago. I went with some of my cousins and nieces, but my biggest supporter, who was by my side the whole time, was my 16-year old daughter Shae. I was nervous about the pain, but every time I brought it up Shae would remind me of the worst pain I have ever felt — having the chest tubes removed after my first lung cancer surgery. She also reminded me that lung cancer has caused me a lot more pain over the years and that is the exact reason I was getting the tattoos!

The hope tattoo on my inner left wrist (pic below) is my anchor; it reminds me that hope, faith and the love of my family and friends got me through those darkest moments and will do so again when I need strength and courage. I was going to get this tattoo in a place that could be easily covered, but doing so would have taken away its significance. The tattoo is a statement that I believe in to my core. I want people to ask me about it so I can share my story and raise awareness about lung cancer. And for me personally, every morning when I wake up, throughout the day and every night before I go to bed I want to see that permanent reminder that there is always Hope!

tattooJill1

The tree of life tattoo on my front hip (pic below) is my rock, my strength. It represents the closest people to my heart, for whom I live for and fight for everyday. It reminds me of where I came from, where I have been and how far I have come. It is especially comforting to know that my mom, dad and aunt are always with me.

tattooJill2

I am still a little surprised that I actually got ‘inked’, but I don’t regret it one bit. In fact, it’s quite the opposite. I love my tattoos. The stories and meanings behind them are connected deeply to my heart, so much so that I actually marked my body with them, something I thought I would never do. Never say never…

 

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LUNGevity Hero Chris Draft

August 28th, 2014 - by admin

LUNGevity Foundation is proud to announce former NFL linebacker Chris Draft as the August LUNGevity Hero. Since the passing of his late wife LaKeasha “Keasha” Rutledge-Draft, Chris has become an important advocate in the fight against lung cancer. Inspired by Keasha’s brave fight against lung cancer, he has made it his mission to raise awareness of the disease, shatter its stigma, and raise funds for life-saving research.

Chris_DraftIn December of 2010 Chris’ world was turned upside down when his wife was diagnosed with lung cancer. At 37 years old, she was a never-smoker and a self-proclaimed “health nut.” While training for a 10-kilometer run, Keasha began to experience shortness of breath. It escalated quickly, so she sought medical advice, and after tests and a CT scan, she was diagnosed with stage IV lung cancer. The prognosis was bad – the cancer had already spread to her brain.

Keasha had an optimistic and positive personality and refused to be discouraged by her prognosis. Although the odds were slim, together the Drafts were determined to beat the disease. On their wedding day, just 11 months after her diagnosis, Keasha and Chris announced the launch of their lung cancer foundation, Team Draft. Unfortunately, exactly one month later, Keasha lost her battle.

To honor her memory and to inform the greater community, Chris made it his mission to change the face of lung cancer and abolish the misconception that lung cancer is only a “smoker’s disease.”

“Chris Draft has shown remarkable dedication to raising lung cancer awareness and putting an end to the harmful stigma associated with lung cancer,” said Andrea Ferris, president and chairman of LUNGevity Foundation. “LUNGevity is glad to have passionate individuals like Chris on our side in the fight against lung cancer.”

Team Draft has worked closely with the NFL to raise awareness through events such as “Tackling Cancer with the St. Louis Rams” and “A Survivor in Every Stadium” and has partnered with other lung cancer nonprofits to further important initiatives. Draft was also recognized for his influential work in the lung cancer community by the SCLC (Southern Christian Leadership Conference)/W.O.M.E.N at the 33rd Annual Drum Major for Justice Awards, and was named a Global Envoy by LIVESTRONG. In his down time, Chris dedicates time to the Chris Draft Family Foundation, which empowers families to lead healthy lifestyles by focusing on education, healthy lifestyles, character development, personal responsibility, self-discipline, and physical fitness.

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