Archive for March, 2011

Something Has To Be Done

March 31st, 2011 - by admin

by Nick Cappiello

Prior to September 5, 2006, Lung Cancer did not occupy a single moment of my day. It just didn’t. But then we discovered my mother had brain lesions, multiple ones. None of this made sense to me. I didn’t know this is how this disease worked. Mom was diagnosed with cancer via neurological symptoms but it isn’t brain cancer? It’s Lung Cancer? She’s not on oxygen! She’s fit! Active! She’s 55 years old for goodness sake.

Mom was as confused as I was. How could she not know she was sick? She went for annual checkups. She’s a Breast Cancer survivor, so her doctors were diligent. Mom and I learned together, research and detection just isn’t that far along for Lung Cancer as it is with other cancers. With this realization, she looked at me with her very determined big blue eyes and said, “Something has to be done.” She wasn’t talking about herself. She knew where her diagnosis would lead.

She meant for those who don’t know they are sick. She meant those who aren’t sick yet. They needed an opportunity like she did when she was diagnosed with Breast Cancer in 1996. She detected it early, she had surgery, and she got 10 more years out of life. She should have gotten more. Every Cancer patient should have that hope.

On October 5, 2006, 30 days after diagnosis, Mom was gone. “Something has to be done.”

Right after mom passed away, my wife and I started plans for a foundation. We would put on an annual golf tournament. Mom ran a golf tournament once a year for her clients. I thought it would be a fitting tribute.

After all, “Something has to be done.”

I’m not raising millions of dollars. But I’m doing “Something.” And I’m not alone: Walks, cookbooks, galas, sporting events, concerts, and so many other “Somethings.”

The stark reality is we do not have a legion of marching lung cancer survivors out there walking, doing fund raising, lobbying and raising awareness. Often we lose them too fast. So my appeal is to all of the family members of someone who has been affected by this disease.

We have to do the “Something” or nothing will get done.

Perhaps the task seems too big. You don’t know where to begin.

There is a network of people who have done “something” at LUNGevity’s Lung Cancer Support Community.

Post that you want to do something. Post what you are thinking. Advice and ideas will pour in.

Next thing you know, you’ll be doing something.

LCSC member “Nick C” & his mom, Randy.

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Katie Brown

A Caregiver’s Mission

March 24th, 2011 - by Katie Brown

It’s been 8 years.

And hindsight is 20/20.

I wish I would have known the right questions to ask, how to seek out available treatment options and I wish there would have been resources to help us through the most difficult times of our lives. But from the moment of diagnosis, it all unfolded so quickly…we were inside of a tornado that turned our lives upside down for 11 months and 21 days. At the end of that time, there were many who were critically injured emotionally and there was one fatality.

When my dad was diagnosed with extensive stage small cell lung cancer, I was 29 years old. I was married with a preschooler. I had gone back to school full-time and was making a career change getting my paralegal certification. To say my hands were full was a severe understatement.

Suddenly, the one person in the world who loved me unconditionally had a terminal disease. I was thrust into a world of oncology and testing and chemotherapeutic agents and radiation that caused severe side effects and nausea. There were no support groups. We felt as though we were going through this nightmare alone and felt like no one cared or had compassion for someone with lung cancer.

Life as all of us knew it changed forever.

At day 12, I swept away his hair as it began to fall out. Later we cut and shaved it because it was just a mess, emotionally difficult, and it just hurt. The hairs on top of his head physically hurt.

Lung cancer is mean. It can destroy so much so quickly. Your life and circumstances, your mind and your body, your relationship with yourself and others…can be affected, destroyed or damaged in many ways.

I watched the strongest man I knew, who had never been sick a day in his life, slowly wither and succumb to the cancer and the harsh treatments he had to endure.

He’d spend his days lying on the sofa following chemo. I would sit on the floor beside his head. I’d give him a gentle hug or kiss the top of his bald head and we’d just sit quietly. Sometimes I’d read him hopeful stories of other cancer survivors. Most times we’d watch a re-run of MASH or CNN or the cooking channel.

By the time we’d cook him something to eat, his appetite would be gone. With so many medications and with the nausea and fatigue that never ended, his appetite was fleeting. I filled the coffee table with bite-size pre-packaged foods and silently prayed that he’d nibble on something because he had gotten dangerously thin. Each bite I saw him take was like a little touchdown victory.

My dad was the strongest person I’d ever met. He never wondered out loud, why me? While he would wince as his veins collapsed from the weekly blood draws and IVs, he never complained to us.

None of his treatments worked. He experienced every adverse side effect. He couldn’t catch a break. He didn’t have a fighting chance…

Watching what was happening to him and feeling unable to help or save him was the worst emotional pain I had ever experienced. And as irrational as it sounds to say out loud, I do still wonder if there was anything I could have done differently that would have saved his life.

Because of my experience as a caregiver, I am who I am today. Would I go back and change anything? Not really.

I’d do it all again because in-between the most desperate and painful times of our lives were moments of clarity and joy and true love. During those 11 months and 21 days, my dad and I grew closer than we had ever been. I got a front-row seat into the man he really was and will always be thankful for that. I may not have ever really known him otherwise.

Those 11 months and 21 days sparked a calling and a mission I never knew existed. I became a lung cancer patient advocate, started my own foundation in 2003, and eventually dedicated my life and career to LUNGevity Foundation.

I spend my days supporting others going through what we went through. I celebrate survivorship and let that fuel the work I’m doing. As each year passes, I see more and more people survive this disease.

The stigma and lack of support for those affected by lung cancer is still prevalent, but we are making strides, using our voices and stories to impact the public and raise awareness.

I’ll never forget how alone I felt then. Today, thanks to LUNGevity’s Lung Cancer Support Community, no one ever has to go through a lung cancer diagnosis alone. People can connect with other survivors and family members, share information and advice and get support and friendship.

I’ll never forget how afraid and incompetent I felt as a caregiver. Today, we are working hard on lung cancer caregiver resources, advocacy initiatives and training and expert education to arm people who are just starting their journey with lung cancer.

I believe all of that aids in a lung cancer patient’s survival. Knowledge is power and together we finally have a fighting chance.

While we support people during their lung cancer journey, we are also funding innovative lung cancer research. LUNGevity will fund about 2 million in life-saving research this year.

I miss my dad every single day.

His lung cancer diagnosis changed my life forever.

Afterwards, I had to ask myself, what am I going to do about it?

My mission became to work hard so no one else has to lose someone they love the way I did.

What about you?

What’s your mission?

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Jill Feldman

What is Luck?

March 17th, 2011 - by Jill Feldman

I have a wonderful husband, loving children, supportive family, thoughtful friends, a roof over my head, food on the table, great health insurance (very important in my family), etc. For all that, I consider myself to be very fortunate, but am I lucky?

When it comes to lung cancer, people tell me all the time that I’m lucky. I’m lucky that my cancer was caught early, I’m lucky that I was able to have surgery, I’m lucky that I was armed with knowledge about lung cancer, I’m lucky that I had the lung cancer world at my disposal, etc. Am I lucky? What does it mean to be lucky? According to my mom it can be a chance happening, like winning the lottery. Or she would say that it’s the way that we treat setbacks and how we choose to look at them.

I first faced adversity at a very young age. I often asked my mom, “Why do bad things always happen to ME,” or “Why are my friends so lucky?” My mom, who was a very compassionate woman, would tell me that I was going to lead a very unhappy life if I continued to think like that. She would say, “Your life and your luck are not defined by WHAT happens to you, but rather by what you do with it.”

My mom also faced a lot of tragedy throughout her life, but she always held to her belief that she controlled much of her own luck. Just six months after my mom was diagnosed with lung cancer we were told that she had a month to live. I was 28, had a 15 month old, was pregnant with my second child and really didn’t think I could, nor did I want, to live my life without her. I was hysterical and I couldn’t understand why she wasn’t. I asked her why she wasn’t more upset and why she didn’t feel cheated. She insisted that she was very fortunate (or in the broader sense, lucky), and continued to say the following:

“Jill, in the 54 years that I have lived, I have lived the life of an 80 year old, both joyous and tragic. Of course I would love to live to see your baby be born, and I would love to live to see Jack have his bar mitzvah.” But, she said, “What’s most important, and what I am grateful for, is that I lived to raise my children… which is more than your father was able to do.”

Wow! Only Susie (my mom) would look beyond herself at that moment and respond with something so selfless and so profound. She always had an answer like that for everything, and it usually incorporated some kind of lesson! As devastated as I was and as cheated as I felt, there was such truth in what she said. At that moment I felt lucky, I felt lucky to have had my mom for 28 years – which was 15 years longer than I had my father.

As far as being lucky that my cancer was caught early… the jury is still out. My cancer was caught early because I was being screened – we all know that if it weren’t for early detection my fate would have been different. I was being screened because my mom, dad, aunt and two grandparents died of lung cancer. So, does that mean I am lucky that they all died from lung cancer? Or, did I look at those losses as an opportunity to be proactive with my own health and create my own luck? What about the knowledge I had and the relationships I had with the medical community when I was diagnosed? I learned a lot about lung cancer and developed relationships with doctors and nurses in the lung cancer field through my involvement with LUNGevity. I was involved with LUNGevity because my mom, dad, aunt and two grandparents died from lung cancer and I needed to try and gain some control over the disease that wouldn’t leave my family alone! Again, does that mean I am lucky that they all died from lung cancer? Or, did I decide I wasn’t going to stand back and let lung cancer win; I was going to fight back and use LUNGevity as my vehicle?

What is luck? Is it a chance happening? Is it when knowledge and preparation meet opportunity? I’ve never won the lottery and I’m never in the right place at the right time, so for now I have to create my own luck. In terms of lung cancer, my luck comes from the way I look at my experiences with the disease and what I do to make sense of them. But, I will say that I am very lucky to have had a mom who wouldn’t allow me to be a victim and who taught me that much of my own luck is something I can control – my perspective.

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Diane Williams

Survivorship

March 14th, 2011 - by Diane Williams

Survivorship means to me – living as well as you can, and enjoying life to the fullest, for as long as you are able.

I was first diagnosed in March, 1998 and again with a new lung cancer in November, 2008.

In 1998, I was diagnosed at stage 2A. I had surgery (left lung removed), and no chemo or radiation. I inquired about chemo or radiation, but was told by the doctors that it would not be a good idea.

In 2008, I was diagnosed at stage 3B. I had concurrent chemo/radiation. I started with Cisplatin/Etoposide, but could not tolerate it. Chemo was changed to Carbo/Taxol.

After surgery in 1998, I did very well with one lung. It took about a year to really adjust, but with only a few exceptions I could do what I had been able to do before.

In 2008, I had severe side effects with the Cisplatin. I did much better with the Carboplatin. My red blood cell counts got very low. I had a loss of appetite, but still managed to gain 15 pounds by eating lots of peanut butter, which seemed to be the one thing that agreed with me. Lost my hair, had severe fatigue, but got through it.

I was lucky. My husband was self-employed and so was able to take some time off. My daughter-in-law also was a great help. I don’t know how I would have managed without them.

There is no support group in my area, nor really any useful resources. The best resources I have found are LUNGevity and GRACE.

I would really like to have a lung cancer support group locally.

After I returned to work following surgery in 1998, one person told me that she had no sympathy because it was my own fault. Most people were polite enough not to come right out and say that, but you could tell that is what they were thinking. I have learned to basically ignore it. If they seem receptive, I try to point out that there are people dealing with lung cancer who never smoked, and that in the case of those who did smoke, the tobacco companies have a great deal of responsibility in getting young people (I was 13 when I started smoking) hooked on nicotine. I’ve found that with people who are not receptive and have made up their mind, there’s just not much you can say.

Lung cancer truly teaches you to live in the moment, enjoy today, and not worry so much about tomorrow. It also reminds you to be grateful for what you have, as you see so many who have it much worse.

For me, because I was a smoker, the worst thing has been seeing how my illness has affected my family. I can remember telling them that it was “my business if I wanted to smoke” – well that’s not true. It has affected everyone in the family, but obviously my husband the most. Although I am doing well right now, I know he worries about my becoming sick again. So the concern is always there. Also, my breathing problems have a definite effect on our lifestyle. He is active and in good health, so it really makes me feel bad that there are so many things we aren’t able to do.

I want to tell people that lung cancer can happen to anyone, and there needs to be much better screening methods, as well as more effective treatments. I want to make sure they understand that no one deserves lung cancer, and that it could be your sister, brother, husband or child. I want them to understand that many people who did smoke were addicted to the nicotine by the tobacco companies, and others only smoked for a short time years prior. You cannot blame anyone for their disease – it does no one any service. If smoking were the only cause of lung cancer, then all smokers would have the disease – actually the majority of smokers do not get lung cancer. I would point out the many environmental factors and the problem with Radon, which many people are not aware of.

Although we are doing more for cancer research all the time, it is still not enough. There needs to be much more research done because the survival rates of lung cancer have not changed much in the past 40 years and more people will die from this disease if we don’t make sure there is enough funding for more research.

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Don’t Set Limits

March 10th, 2011 - by admin

by Bud Baker

It’s mid March, 2011, as I sit down to write this. My 60th birthday is in three weeks. It’s a birthday celebration that didn’t seem too certain when I was diagnosed with lung cancer forty months ago. But I was in a small minority of lung cancer patients who are diagnosed early, and have remained cancer free since my surgery in December, 2007.

The biopsy from my surgery found one cancerous lymph node, so my diagnosis became stage 2. I completed three rounds of chemotherapy in April, 2008. I don’t yet know if I’m cured, but at least I’ve had thee plus years of good health since my diagnosis and surgery. Hopefully, early diagnosis will soon become a lot more common, and a majority of lung cancer patients will enjoy at least a few cancer free years after treatment, just like I have. For those lucky enough to experience that, I say this: don’t set limits on what you can do. Challenge yourself to see what you can achieve, and how good a quality of life you can have after cancer.

I was already a long distance cyclist before my diagnosis. I even did a 200k ride two weeks before my surgery. So, challenging myself to see what I could do was already something I was familiar with. Setting out to see if you can do a 200k (125 miles) or 300k (187 miles) randonneuring ride on a bicycle is pretty scary at first. The natural thought is that it’s just impossible for an ordinary person to ride that far on a bicycle. But, with good training, and building up to longer distances, it turns out that it’s not nearly as tough as you thought.

But like everyone who’s diagnosed with lung cancer and scheduled to have part of a lung removed, I wondered what it would be like afterward. Research had already told me that the body cannot regenerate lost lung tissue, and that chronic fatigue was a common symptom of too much lost lung function. My lung function was good enough that I wasn’t worried about chronic fatigue after surgery, but would I still have the stamina to do a 200k ride? Would I still be able to average over 120 miles a week on a bike, like I did in 2007? My mindset was that I would challenge myself and find out.

Before the end of May in 2008, six weeks after I finished chemotherapy, I did a 100 mile ride, and in early June, I did a 200k. So yes, long distance riding was still possible after lung cancer. In the time since those two rides, I’ve done 51 more rides of 100 miles or more.

In 2010, my riding focus changed from long distance riding to commuting to work on my bike. But even with the majority of my 2010 miles on a heavier commuting bike, and holding down a full time job all year, I still managed over 7,500 miles ridden for the year, an average of over 140 miles a week.

What do I hope to accomplish next on a bike? At my current pace, by the end of this coming June, I will have ridden 24,900 miles since my diagnosis. Does that number sound familiar? It’s the circumference of the earth. If I reach that milestone, I will have ridden around the world since my lung cancer diagnosis.

Can I do it? I think I can. But, things like that are only possible if you challenge yourself, rather than arbitrarily deciding what you CAN’T do.

In other words, don’t set limits!

Bud Baker, LCSC member since 2008 “Uneasyrider1″

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