Archive for the ‘Young Adult Lung Cancer Blog’ Category

My War on Lung Cancer

August 24th, 2012 - by admin

My name is “B”.

I was diagnosed with stage IV lung cancer during Thanksgiving in 2011.

It was shocking. My profile didn’t fit the stereotypical lung cancer patient. I’m a relatively young, non-smoking active individual with a healthy lifestyle and no family history of cancer. That may be why I was content with being (wrongly) diagnosed with allergies, then asthma for months, even though inhalers didn’t do anything to relieve my shortness of breath. It was hard to comprehend.

The goal of this blog is to raise awareness of lung cancer to help remove the stigma associated with lung cancer, encourage donations to lung cancer organizations, and help people detect lung cancer earlier. According to the National Cancer Institute, lung cancer is the top killing cancer in the US.

When I received my diagnosis, I was so shocked, because as a relatively young healthy non-smoker with no family history of cancer, lung cancer was not on my radar.

However, breast cancer was in my radar, because there’s a good amount of marketing for their cause. I told “M”‘s mom that I hope to bring that same level of awareness to lung cancer when I get better. She said, why wait til you get better? Why not now? I thought about it for a while.

I don’t really know when/if I’ll be free of cancer, so why wait?

My friend, “L”, accelerated my involvement in battling lung cancer in the community. She found a not-for-profit organization, LUNGevity, dedicated to eradicating lung cancer and supporting those impacted by lung cancer.  LUNGevity was more than willing to assist us in heightening awareness in the Asian community.

We joined LUNGevity’s committee and decided to bring the Asian community to Lungevity’s annual walk, Breathe Deep NYC on  October 21, 2012.

http://events.lungevity.org/site/TR/2012TeamRaiser/General/1643278695?pg=team&fr_id=3450&team_id=28860 )

Being a  leader in two major Asian organizations, “L” would be able to reach out to Asians.

Being a patient at MSK, I offered to reach out to lung cancer patients. Last week I went in to MSK for my immunotherapy and to help market Breathe Deep. I grew antsy waiting for my  treatment only to realize that I won’t get my treatment anymore. Unfortunately, the most recent CT scan showed disease progression. The trial drug had been tolerable, but the “good” days seem to have come to an end.

The doctor suggested that before we revert back to one of the harsher chemo treatments, I should try Tarceva daily for a month. The two main side effects are  diarrhea and face rashes. I’m not sure which is worse -  diarrhea or nausea. I guess we’ll see. I felt like I was losing this fight. All I could do was look at “M” and cry. I want to grow old with him, but now I’m not sure if that was possible.

My mind was swirling with mortality, until I remembered that I was suppose to talk to my nurse about marketing for Breathe  Deep. I shook off the mortality thoughts momentarily and asked her if MSK would market this event. The nurse was familiar with Breathe Deep and offered to help.

I don’t know what my prognosis is, but I felt better knowing the war against lung cancer will be promising with wonderful, compassionate, and inspiring people around me.

To continue to follow “B’s” lung cancer story, visit her blog.

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Raising Awareness

January 23rd, 2012 - by admin

by Heather Geraghty

Awareness is the single most important aspect of a cause and without it, the cause simply could not exist.

Lung cancer impacts more people every year than any other cancer, yet it is a cancer with the least amount of awareness. In fact, when most people think about lung cancer it is usually masked by smoke. This narrow perception of the disease makes awareness that much more imperative to advocates and survivors alike.

Although nobody deserves cancer, lung cancer remains the most stigmatized. Whether you smoke or not should not matter. Big tobacco companies invest billions of dollars every year to ensure the most addictive products, and I think those who fall victim are hardly the ones to blame. Can you think of a time where you felt victim to a scam, exploitation, or addiction? Smoking is not a reason to be blamed, punished, banned or victimized by society.  And for those who smoked, they don’t deserve a “life sentence”.

I believe that lung cancer needs more awareness through educators. There are not enough people talking about the disease, advocating for patients, and encouraging a change in society’s overall view of lung cancer. It is crucial to know the facts, not just for your health but for those around you. Lung health should be universal, and prevention education should not be categorized by whether someone smokes or not.

I feel like LUNGevity Foundation is one of the only non-judgmental organizations fighting against this disease. Katie Brown, Director of Support and Advocacy, said it best when she described the Foundation as “cause agnostic”.

My name is Heather Geraghty, and I am a former cigarette smoker. I was diagnosed with lung cancer at 24 years old, and I celebrated one year lung cancer free on January 20, 2012.

I encourage you to learn the facts about lung cancer, and I challenge you to spread awareness.

“Hope is both the earliest and the most indispensable virtue inherent in the state of being alive. If life is to be sustained hope must remain, even where confidence is wounded, trust impaired.” –Erik Erikson

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Dating with Cancer

October 14th, 2011 - by admin

by Laura McCracken

Sometimes talking about having lung cancer can be hard for me, because I try to live life normally and not think about it all of the time. However, the awareness of cancer is carried with me every day, no matter how distracting life can be. Taking medications, aches & pains, and online communications with other survivors, remind me every day that I’ll never totally fixed. However, it doesn’t mean that I’m going to give up, and feel defeated by my fate. I’ve been so lucky in so many ways that it’s not hard to keep pushing forward. From the moment you are diagnosed with cancer, you are a survivor, no matter how long or short your fight is.

Due to advances in medicine, in many cases cancer is being treated more often these days as a chronic condition, rather than a death sentence. Living with cancer is becoming more of a reality for many people, especially young adults. If I had the lung cancer that I do even ten years ago, I would have probably be dead by now, but there is hope now that I have many years ahead of me. When you are diagnosed with cancer in your 20′s or 30′s, and over time you are able to maintain it with medication, you stop thinking that you’re terminally ill and can start thinking about actually having a future. After two years of having stable health, I started wondering to myself, “What am I going to do with the next 10, 20, or even 30 years of my life?”

When I was diagnosed with incurable Stage 3B lung cancer in December of 2007 when I was 30 years old, suddenly all of the procrastinations of my life were sudden regrets. I had to make a list of the most essential things I wanted to do before I died, like visit Japan again, or make art again. Four years later I’m still here and living life as normally as possible. Of course some days are better than others, and the illness is always lingering the back of my mind, but more often than not I try to not let it hold me back, preventing what I feel compelled to do.

I am able to ride my bike again, and even rode 75 miles in one day during a charity even this past May of 2011.  Keeping active and involved with other people keeps you in touch with the world, and the more I move – the better I feel. It was slow process to get stronger, starting with taking walks, stretching, and breathing exercise.  Now I’m able to exercise regularly, work a full time job, take care of housework, travel, drive a car – all things I was worried that I wouldn’t ever be able to do again. Though of course I’m one of the lucky ones that could raise my cardio abilities, but because of great treatments available, more people like me are going to be able to accomplish the same things.

When death is staring you in the face, and you try so hard to live life to the fullest, you really realize that the most important thing in life is friends and family. If you don’t have a good support system, then it can be pretty difficult to push forward and thrive. Joining support groups, going to meetings, joining charity, and attending events really helps you keep in touch with a sense of community and understanding.

The one thing that I thought would never be possible though was to date again. I had pretty much resigned myself to a fate of being a spinster, and not feeling attractive to a partner. Dating again after being diagnosed with cancer can be a hard step. There are many stigmas attached with cancer, especially with lung cancer (even if you are a non-smoker like myself), so I was terrified of trying dating because I though that I would have to constantly have to fight to prove that I was “normal”. However I knew for my mental health and self-esteem, I was determined to try though to at least have a social life again.

I started hanging out socially again with friends, and going on “friend dates”, which helped me get back into the swing of being social, and raised my confidence. I was insecure at first in 2009 when I first started going out again, because my hair was still barely growing in, and my skin was so bad from medications. Especially for a female, when you lose your hair and your look changes so much, it takes a while to create a new image of yourself that you can feel comfortable with. Making myself jump in the pool again and realizing that no, not everyone is staring at me, and no one knows that I am sick, really helped me get used to creating a new sense of self-worth.

From 2009 to 2010 had gone on a few dates, and even had a boyfriend briefly, but due to my insecurities and poor choices so it didn’t last long.  I didn’t have much hope or expectations of anything really meaningful or worthy of a long-term relationship.   I still didn’t have the right mind-set that anyone could really want to be with me, because of my illness.  Constant worry if men would accept me totally, with scars or medication side-effects, or stick by me when I have to deal with health problems, all kept me from really feeling deserving of a healthy relationship.  Cancer can definitely be some very unsexy at times, and might be too much trouble for the average person to deal with.  It took a lot of soul-searching and decided that being in a real long-term relationship was something important that I just couldn’t live without. Why couldn’t I find a good person. There was no good reason why I had to live the rest of my life alone; only material skin-deep reasons that I knew didn’t matter to everyone.

By the summer of 2010 I was feeling more confident about my looks and feeling stronger, so I decided to try dating again. It was concerning to me about how I should present myself in an online profile, and decided to be very honest, but keep positive. I didn’t however want to present any false illusion that my life was perfect, because no one is perfect. Many people on dating profiles try to create a fake glossy image, or put way too many expectations on other people, but wise people can pinpoint the fakes. You don’t want to attract a fool that is easily swayed by fake advertising anyway, so don’t even try it. I was tired of the usual bar scene, and the whole thing was very exhausting to me physically and spiritually. I needed to find someone who was grounded, healthy, positive, and wasn’t caught-up in materialistic pursuits. I tried to look for someone that would be good for me, and good to me.

I debated about how much information about my cancer history to share with a guy at first, because they might not understand, or pass judgment before they really knew me. On my first date with my boyfriend, I decided to just be honest, and be myself – and not to create any illusions. When I realized that I really liked this guy, I worked up the nerve and dropped the dreaded “C word”. Often people say wait a few dates to mention it, but I didn’t want to waste our time if it was a deal-breaker. To my surprise though, he didn’t think it as an issue. However I tried to choose someone sensitive and kind, so maybe that helped. I was very wary at first, but after a while, I realized that he really was comfortable with me and my illness.

Maybe because I’m at the age where many people my age or older have already had some sort of trauma and major life experiences, they have already learned not to sweat the small stuff. People can learn from past mistakes, and it can put into focus what’s really important in life. Older and wiser sometimes really is true, and people learn not to have unrealistic expectations from other people. I certainly didn’t expect someone to be so compassionate and understanding so such a big issue in my life. Being sensitive to the limitations and needs of another person can be tricky, but honesty and empathy goes a long way.

October of 2011 I’m celebrating the one-year anniversary with my boyfriend.  It’s the longest relationship that I have had since college, which amazes me.  I never knew it would be possible to find a man who is so understanding, loving, and not swayed by the fact that I don’t know how long I have to live.  His attitude is “we never know how long we have here on earth”, so we just try to make the most of it.

I was worried at first that perhaps my boyfriend didn’t totally understand how ill I had been and how unsure my future is.  So, early on into our relationship when I knew things were getting serious, I took him with me to one of my oncologist appointments so he could ask any questions.  After getting more information, he really understood the disease and my situation, but actually felt more confident about my outlook for the future.  It’s good to have someone else on my team.  He has helped me become more confident and healthier mentally and physically.

It is possible to love again, and have a real connection with someone special.  I consider myself very lucky, however being brave and keeping a good attitude has not only helped me battle cancer, but also conquer love.

Laura is participating in Breathe Deep DFW on November 12, and will be one of the survivor speakers that morning.  Join Laura on November 12, or check the LUNGevity website to find a Breathe Deep event near you.

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Teamwork

October 11th, 2011 - by admin

by Jon Filbert

As a kid growing up in my home we had two seasons, baseball season and off season…

We lived for baseball.

A big part of the sport of baseball is that you learn to be a team player. Cancer and survivorship is a team effort too. If you think you can do it alone, you are wrong. Everyone needs their team behind them. Not only will you need support through chemo, radiation, surgery and everything else cancer throws at you, but you also need advocates, people to fight for you, while you are fighting the cancer.

If you don’t have a team to support you through your cancer fight, you can build one by joining a support group or by requesting a LUNGevity LifeLine Support Partner.

Survivorship does not start when you are “CURED”, it starts from the second you are diagnosed. That being said, not everyone goes through the same process in their fight. Some people have a longer fight, some a shorter one. Some have many treatments, others only a few.  Some see and feel the effects of their treatment immediately, some feel it years later. Each patients’ process is different.

If you are lucky enough to fight and survive, then you have to get used to the “New Normal”.  Living life with cancer or living life after cancer.

Life that consists of constant doctor’s appointments, feeling scared every time you feel a change in your body… the list goes on. But the good news is…you are a survivor, and you are not alone.

When survivors team up, and fight as one voice, we can make changes. We are a loud voice who can make a difference… not only for us, but for the future “us”.

To say that survivorship is important, is a gross understatement. Fighting together as a whole, means we have a chance to help fight for the next generation of survivors, no matter their age, sex, race or diagnosis.

With teamwork, we are never alone.

Photo of Ryan Tatusko, Pitcher Washington Nationals (former Syracuse Chiefs, Texas Ranger) with a baseball he signed and donated to support LUNGevity’s efforts to raise awareness.

This signed ball from Ryan Tatusko will be a door prize at Breathe Deep DFW November 12, 2011. .  Register for your chance to win!

Jon Filbert will be a speaker at Breathe Deep DFW

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Why Some People Walk Away

October 3rd, 2011 - by admin

by Heather Geraghty

When I was first diagnosed with lung cancer people didn’t know how to respond to me, and they would typically say “You will be okay”, or “I’m sorry”. Those responses were acceptable, but sometimes I really just wanted someone to understand exactly what I felt and what I was going through. I recall talking about my surgery, the fear I had, the pain I was in, and the overall impact it had on my life past, present, and future. The feelings overwhelmed me at times and seemed very much out of my control.

Recently, I met someone in my hometown that has lung cancer too. We haven’t been friends for long, but I have met her a few times and call her often. We talk about the issues surrounding funding for the disease, the stigmas, and our personal stories with cancer. She is a little bit of a hard-headed person. However, she is kind-hearted, funny and absolutely irresistible. She tells it like it is, and sometimes that can be hard to hear.

When I met her I was planning a lung cancer fundraiser in my area. She called me on the phone, criticized and had suggestions for the event. Then she asked me if I’d meet her for lunch. I was nervous and excited to meet her for the first time. At this point, I hadn’t met many other survivors of lung cancer. But from the moment I met her, I knew I wanted to continue a friendship beyond my fundraiser. She was full of spirit, energy, and she unknowingly made me want to fight even harder for the future of lung cancer research, raise awareness, and work to erase the stigma of this disease.

A few days before my fundraiser, she told me that there was a possibility that her lung cancer had returned. And the night of the fundraiser she confirmed that it had. I didn’t know how to approach the situation- just like the people who didn’t know what to say to me when they had learned about my lung cancer.

I always asked, “Do you want to talk about it?” I thought this was the very least I could possibly do. When she was comfortable enough to talk about it, I let her pour everything out onto me. And I did not mind.

I spoke with her today, and I still do not know what to say. She told me today that her doctor believes she has 6 months to 1 year to live. From the time I met her to now, she appears 100% accepting of her diagnosis and prognosis. There seems to be no fighting within her, no battle or war to overcome, she has simply accepted her fate.

What am I suppose to do? What am I suppose to say? How am I supposed to act when I see her again? These are the same questions that those friends and family who maintained communication with me must have pondered about themselves. And I assume those who simply could not come to a conclusion, were those who said and did nothing during my prognosis and recovery.

Right now I feel stuck because I do not want to remain unheard. I do not want her to think I am a person she cannot count on. I know from my own lung cancer experience how it feels to not be understood. But I simply cannot place myself in her position.

I never experienced chemotherapy or radiation. I cannot relate to her experience.

And now I understand what that feels like, and it feels paralyzing.

It is not fair. It is not fair to live when someone else is dying. And it is unbelievably painful to not be able to help someone heal, which seems as uncontrollable as cancer itself. I have come to the conclusion that I need to do all that I can do, no matter how hard it is.

It would be too easy to not contact her anymore. No more phone calls, no more visits, and avoid our mutual acquaintances, but I refuse to do this. Even though I do not understand what she is going through, I will be there for her. If she wants someone to talk to I will listen, if she needs a hug I will open my arms, and if she is having a hard time adjusting to her environment I will lend a hand. That’s what I can do.

I can understand now why people choose to simply walk away.  I have felt what it was like for those people who couldn’t relate to me when I was diagnosed.  Those same people walked away from me when I was diagnosed because they could no longer relate to me.

But I will not do that.  She is my friend, and I will not allow lung cancer to come between us.

I will not be someone who walks away.

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