Archive for January, 2011

Katie Brown

What Do You Do Differently After Cancer?

January 30th, 2011 - by Katie Brown

Recently another thought-provoking post was made on LUNGevity’s Lung Cancer Support Community titled, “What do you do differently now?”, asking our members what they do differently after having been diagnosed with lung cancer.

Lung cancer affects more people than all major cancers combined, receives virtually no federal funding, has no early detection test and limited treatment options for the over 80% who are diagnosed in its late stages. Once you’ve been told you’ve got lung cancer, I believe that is the moment you become a survivor.

That is the moment your life changes forever.

There is HOPE. People do survive lung cancer and you can find them at LUNGevity’s LCSC.

There are other aggressive cancers out there too and a cancer diagnosis affects an entire family, not just the patient.

So reader, what do you do differently after cancer?

I’ll tell you what I do differently.

I feel more. I hear more. I live more. I know how precious life is because it can end at any moment without warning. I live in total transparency, forsaking drama at all costs. I have sought out and clung to my spirituality and faith.

I also have little patience for the “small stuff.” I don’t want to sit around and gossip or contemplate other people’s lives. I have no patience for people who are superficial or careless or hurtful. Before their callousness would have hurt my feelings and upset me for days, now I just never give it any of my precious time or thought. I eliminate toxic people out of my life.

When you’ve held the hands of your parents and watched them take their last breaths, you really do know how quickly this earthly life can end. When you’ve watched support group members pass away as frequently as I have, you really do know how short this life is.

The moment I heard the words, “cervical cancer”, I changed. The moment I heard the words “lung cancer” out of my dad’s mouth, my life changed.

My passion and my mission became my career. My secure and safe life was rocked to the core and suddenly I was kicked into HD and real love and meaningful living and making a difference with every day became as vital to me as breathing.

A switch has been turned on inside me that drives me forward these days. The need to make this life count for something never sleeps or stops. Is that good or bad? A lot of one and a little bit of the other.

What do I do differently after cancer?

Everything. Life. It’s all different.

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Katie Brown

Scanxiety

January 30th, 2011 - by Katie Brown

by Katie Brown

Scanxiety: The tension which builds particularly amongst those who have or have had cancer as they move towards their regular check up or scan.

Do you get scanxiety? If you’ve had cancer or any degenerative disease, chances are you’ve had scanxiety. It’s brutal. In the words of my late friend Brunhilda “Bucky” Alexander, “It’s waiting if the other shoe drops, or if you’ve skirted the odds and gotten granted a probation.”

Recently on the LUNGevity Lung Cancer Support Community forums this question was posed to the message board members, “Do you suffer anxiety before your scans and how do you deal with scanxiety?”

Here’s my answer. Of course I do!

It’s been 15 years since I was diagnosed with early stage cervical cancer. At that time I was told a recurrence was certain and a full hysterectomy was in the cards for me before I was even 25. At diagnosis I had never been pregnant. I didn’t know if I’d ever get to be mom. Thankfully the worst never happened. I did have a child and later adopted another. But I’ve held my breath with every single test the last 15 years. THATS “scanxiety”.

It’s a deep-seated pit in the bottom of my stomach and for days before the test and for days after there are little fleeting thoughts and nightmares that play out in my mind…what if….what if the cancer is back?

I also get CT scans yearly now since I lost my dad to lung cancer. With those scans, i always wonder if this is the year the “genetic ax” falls and the radiologists will find something in my lungs too.

Scanxiety can be brutal for some people. They may miss work and even take anti-anxiety medications to get themselves thru the torture of waiting for results.

For me I’ve learned to keep my days busy. I fill my schedule so that i don’t have a minute of down time. I’ll pamper myself with outings, a message or manicure…that sounds perfectly wonderful and zen-like, but it’s really not.

It’s those late nights when everyone is asleep that fear and uncertainty visit me. I don’t share my fears with my family or friends because they simply haven’t been thru it and they can’t fully understand. There are many many sleepless nights.

I pray and meditate sometimes…but mostly what helps me instantly is connecting with someone else who knows what scanxiety is like. It’s just being there, even virtually on LUNGevity’s LCSC, with others who can say they get it, and us getting thru it together.

Like some of the warriors on LCSC say, “It is what it is…and it will be whatever it will be.”

That’s all true…but some of us need support, breadcrumbs of hope, to get us thru our forest of fears to be able to face whatever “it” may be with all the strength we have.

If you experience scanxiety, reach out to others who “get it.”

We’ll help you get thru it.

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Katie Brown

The Research IS There. It's Time To Fund It.

January 26th, 2011 - by Katie Brown

by Katie Brown

I had an advocacy “light-bulb” moment this past week that changed the way, and even the urgency in which I view some things.

I am a lung cancer patient advocate. Lung cancer is the deadliest cancer killer with the least funding. Lung cancer does not discriminate- meaning anyone with lungs can get it. It kills 2xs more young women under 40 than breast cancer. It’s not simply a smoker’s disease.

Enough said right? Where does my passion come from? I lost my dad to lung cancer. Because of no early detection, limited treatment options and virtually no support, he didn’t have a fighting chance. Lung cancer is a cancer that’s discriminated against because of cigarettes. And it kills about 437 people a day…the equivilent of a jumbo jet crashing…EVERY SINGLE DAY….

So my outrage is that there isn’t compassion. People simply don’t care. It’s easier to ignore this disease than it is to address it. Until it affects you personally, you don’t want to think about it.

And there’s no funding. No one is funding the disease that wipes out an entire jumbo jet every single day.

And without funding, there is no research. No one cares to research this disease.

Or do they?

I learned this week that there are millions of dollars in lung cancer research in need of funding.

It’s there! Top scientists and researchers ARE working on lung cancer research.

Research that is being shelved because there simply isn’t funding to continue.

Can you believe it? It’s there people. The drug that just may save your life is sitting on a shelf just waiting on funding…

I heard about amazing translational (“bench to bedside” to the patient) research just waiting for funding. For some reason I thought the funding came first…and this is true in a lot of cases. We need funding first to enlist young investigators and make the field of lung cancer research more appealing to researchers…BUT there is research being done right now by people who understand the epidemic that lung cancer has become. And I’ll bet these same people have been affected by lung cancer in many of the same ways I have been.

LUNGevity will be funding 2 million dollars this year for translational lung cancer research. That’s a HUGE number in terms of private funding…but it’s just a drop in the bucket.

Now that I know the research is there, waiting, sitting on a shelf until the funding is available…my urgency and passion has kicked up several notches. A cure just may be sitting on a shelf somewhere.

It’s never been more important to raise those research dollars.

Every dollar raised in our walks and events is a step closer to a cure..

Let’s RUN !

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Jill Feldman

Making it Real

January 25th, 2011 - by Jill Feldman

I received a text message a few days ago from a friend who just wanted to say hi, but she also wished me a happy anniversary. I wasn’t sure what she was talking about because my anniversary is in September, so I just ignored it. Several hours later, while working, I realized what anniversary she was talking about. It was two years ago that day that I had surgery and was officially diagnosed with lung cancer.

I am someone who remembers dates, especially ones that are life-changing. Everyone in my family calls me when their kids are preparing a family tree to ask when everyone was born and when they died. How could I not remember the day I was officially diagnosed? I realize it was not a happy moment, but it was also the day I became cancer-free, and that is a reason to be happy. Considering it was so uncharacteristic of me to forget, I had to analyze it a little bit.

Was it because I’m busy with work, four kids, and life? Was it because I was completely drugged and don’t have any memory of the day? Did I just want to forget that day? Is it possible that I don’t want to measure my life by how many years I am cancer-free? I think all of these possibilities hold some truth. I do know that it’s not because I am ashamed or feel responsible for getting lung cancer. I think that even two years later it’s still so surreal and there’s a part of me that is still in denial.

I’m sure most would say I am far from denial because I am open and willing to share my story anytime. And that’s true, but I don’t think most catch that I hold back in many ways. For instance, when someone asks me why I had surgery I tell them about my surgery, NOT my diagnosis. I find myself saying “They removed a cancerous lesion from my lung,” not “I had lung cancer.” Along the same lines, I have never gotten up in front of a crowd and said, “I am a lung cancer survivor,” or “When I was diagnosed with lung cancer.” I tend to say it in a subtle way like, “When I became the patient,” or “With my personal experience.” Most lung cancer survivors easily say, “I have been a lung cancer survivor for __ years.” I refer to everything as, “BLC (before lung cancer) or ALC (after lung cancer).”

Obviously I can talk about my experience, and I can certainly write my thoughts and feelings on paper, so maybe denial isn’t the right word either. Maybe the right word is reality. If I say those actual words out loud then it becomes real, and the reality for me is deeper than simply being diagnosed with lung cancer.

I may avoid making my own lung cancer diagnosis “real,” but I don’t avoid the reality of lung cancer. I may cope in an unconventional way, but it works for me. Two years is the first big milestone with lung cancer. I feel both relief and uncertainty, but I also feel fortunate–and that’s real.

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Katie Brown

Beware: Not all donation dollars go where you think they will…

January 7th, 2011 - by Katie Brown

By Katie Brown

As an event coordinator one of my primary goals is securing sponsors, donors and participants for my event. There are so many logistics that go into planning an event the scale of the DFW Walk for LUNGevity, but at the end of the day the main reason for the event itself is to raise awareness about lung cancer and money- specifically for lung cancer research.

Sometimes I’ll hear that someone I’ve connected with has already donated to a cancer charity. They feel as though they’ve already “given”, and well, it’s all going to the same place, right? “Cancer is cancer isn’t it?”

No.

Ideally we want a cure for all cancers, but I’m raising awareness and funds for lung cancer.

Lung cancer killed my father. Because of poor treatment options, little to no research or support my father didn’t have a fighting chance.

Lung cancer is THE deadliest cancer killer with the LEAST funding for research. It kills approximately 435 people A DAY- EVERYDAY.

It kills more than breast cancer, prostate cancer and colon cancer COMBINED.

It’s an epidemic.

It kills smokers and people who have never smoked in their lives. It does not discriminate and it affects people of all genders, ages and ethnicities. We can no longer hide from it. We are all at risk.

When someone says a donation to a cancer charity or a national cancer organization goes to help “all” cancers or that it all “goes to the same place, ” I have to correct them.

There are national cancer organizations that don’t give a dime to fund lung cancer research.

Some will only fund tobacco cessation programs or prevention programs. Some of these organizations discriminate against lung cancer patients and perpetuate the stigma that lung cancer is solely a preventable disease and is caused only by smoking. Truth is, if cigarettes were eliminated from the Earth today, there would still be cases of lung cancer. And hey, just because someone smoked doesn’t mean they deserve to die. No one does.

I don’t want to fund those types of organizations.

There are also organizations that claim to be lung cancer organizations that dedicate little or no funding to research or patient support. Just because an organization has “lung cancer” in its name doesn’t mean your donation dollars are going where you want them to go. They may very well be paying for that executives corner office! And just because an event is named a “lung cancer” event, doesn’t mean your donation dollar is making a marked difference in the fight against lung cancer.

My point is, do your research. Be vigilant.

Make sure your dollars are making the biggest difference because not all donation dollars will go where you think they will…

For more information on my organization of choice, LUNGevity, visit www.lungevity.org You can see the research that’s been funded, review the staff, the scientific board and see how dedicated this organization is to ending lung cancer.

In 2009, charity watchdog organization, Charity Navigator, named LUNGevity the fastest growing charity and gave LUNGevity 5-stars for sound fiscal management. They are working hard to make lung cancer a national priority by raising awareness thru national events, funding innovative lung cancer specific research and offering support and education to everyone affected by lung cancer.

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