Posts Tagged ‘experts’

Jill Feldman

Finding the Silver Linings

April 10th, 2013 - by Jill Feldman

I have always wondered why people refer to their cancer diagnosis as a gift. Gifts are supposed to be exciting, fun and come from love. If being diagnosed with lung cancer was a gift, I would have returned it a long time ago!

But, I am a believer in silver linings; finding the positive in a situation no matter how unpleasant, difficult or even painful it may be. I know it’s easier said than done, but after losing my parents and other loved ones to lung cancer at a young age, I learned that it was my choice about how I respond to and handle the inevitable adversity we face in life.

I have chosen to find the silver linings. Finding the silver lining (which isn’t always easy!) provides balance and perspective during tough times. The ability to find something positive among the negative is empowering, and to find meaning in tragedy helps give both physical and emotional suffering a purpose. That purpose, and meaning, gives me a reason to keep going, to believe, to have hope.

Over the years I’ve learned that silver linings can be as small as your first walk to the corner after surgery or as big as being told you’re cancer-free.  I’ve learned that silver linings don’t take away pain, sadness or isolation, but they do help lessen the blow at times. Most importantly, I have learned that finding the silver lining is a choice ~ sometimes it’s hard to find, but it’s there if you look hard enough.

In the very large dark cloud of lung cancer that has tormented me for 30 years I have found several silver linings. Below are just a few:

 

  • Inexplicable tragedy can create an opportunity to take anger and sadness and turn it into positive change. For the past 11 years LUNGevity has been a vehicle to redirect my negative feelings into action, which has helped me reconcile with losing so many people I loved to lung cancer. It also helped me because my involvement with LUNGevity armed me with the weapons (knowledge, friendships and relationships with doctors and nurses) I needed to face my own lung cancer diagnosis with courage and not fear.
  • Ten years ago lung cancer was the invisible disease. That is no longer the case, and I am honored that I have had the opportunity to play a critical role in the growth of LUNGevity and the fight against lung cancer. There have been more advancements in lung cancer research in the past 7 years than the 25 years prior. I have options that mom, dad and so many others didn’t like targeted therapy and focused radiation; these are major silver linings in a disease previously associated with very little hope.
  • I have developed lifelong friendships and relationships with people I would have never met if it weren’t for lung cancer. Friends who understand a part of me that no one else does. Friends that I can’t imagine not being in my life.
  • I have a story that matters. A story of purpose that involves all the people who have touched my life and whose lives I have touched. There is both good and bad woven into my story and sometimes it feels like the bad plays a major role, but this quote says it all, “Life is like photography, we use the negative to develop.” I do not know how my story will continue to develop, but it’s a story I am proud to tell.
  • It takes a village  The far-reaching unconditional support my family has received from our small community has been touching and humbling; from the sheer number of people who want to help to the unbelievable measures many have gone to support us.

 

The silver lining in my community reaches far beyond me personally. I am still in awe of the teenagers at Deerfield High School. The awareness and funds for research that they raised in just three weeks is mind blowing.  I’m not sure they really understand that their efforts will have an impact on those affected by lung cancer for years to come. And last year our small community of 18,000 people attracted over 1,300 people and raised more than $140,000 for Breathe Deep Deerfield (a fun-run & walk) ~ something cities with millions of people have never done. The overwhelming community support gives me strength and hope.

I am excited that we have expanded the reach of our event across the northern suburbs of Chicago to create Breathe Deep North Shore. I can only imagine the impact we can have if the surrounding communities join in the fight against lung cancer.  Margaret Mead once said, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”

We are that small group of thoughtful, committed citizens and we can change the world of lung cancer.  Please join me at Breathe Deep North Shore on April 28th at Deerfield High School.  To register or donate visit www.lungevity.org/northshore.

Of course not everyone believes there is a silver lining in their cancer experience and that’s ok.  No matter where I am in my cancer journey, I will continue to find the silver lining.  Why?  Because it’s beautiful and it gives me hope ~ no cancer, pain or suffering can take that away!

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Posted in Events, Lung Cancer Survivors, Stories of HOPE | 7 Comments »

Kenneth Lourie

My Team

March 26th, 2013 - by Kenneth Lourie

Not literally, of course. Nor am I the coach or the general manager. But I do feel like an owner, in that there are people that I invest in – again not literally, but definitely emotionally.

The people who express the kind of positivity and confidence and encouragement – and empathy and understanding quite honestly, of the demands and rigors physically, emotionally and spiritually of being a terminal cancer patient. Aside from my immediate family and inner circle of friends, co-workers, and fellow cancer patients with whom I’ve connected, I refer to all the people who have sent cards, letters, e-mails and general well-wishes offering their hope, prayers and confidence in yours truly surviving this ordeal.

Moreover, there are people I’ve met along the way: health care providers, therapists, newly diagnosed cancer patients, previously diagnosed cancer patients, individuals who don’t know me/don’t know my story; whose personality, perspective, enthusiasm and sincerity have empowered me, and who have exuded the kind of positive and uplifting spirit that fuels the passion that a stage IV lung cancer patient tends to lose as the fight for one’s own survival continues. To invoke a sports cliché: these are people who are good in the locker room/clubhouse.

These individuals are selfless, dedicated, motivated, caring, concerned, successful, can-do-type positive influences who optimize their optimism and bury their pessimism, especially around a terminal cancer patient. The last thing, the absolute last vibe that a terminal patient needs is negativity, depression, anxiety, worry and stress; internally and equally importantly: externally. I don’t need to feel or be influenced by or be in the presence of anybody – or anything, that intentionally or unintentionally (by their nature) brings me down or opens me up to self doubt, or doubt of any kind for that matter. I need to believe. And most importantly, I/we need to be infused with positivity. And I don’t mean Stepford Wives-type behavior (robotic, following a script, lacking in substance) either. I mean, the human touch, emotionally certainly and occasionally even physically. In summary, we need a connection, a feeling of togetherness and mutual awareness of the patient’s plight and a willingness to face it and dare I say, discuss it together in an intelligent, thoughtful and exuberant-type manner where the highs – in life and in any treatment protocol, are maximized and where the lows are minimized.

The up-and-down-and-all-around existence of a cancer patient who’s terminal is already as much negativity (which becomes almost endemic) as one can endure. Therefore, any more negativity from any source in any way/context might just push that patient over his or her emotional edge. An edge which might involve a metaphorical set of finger nails.

Who knows really, what the patient’s limitations are? We only know who, what, where and when circumstances exacerbate an already precarious position, a position certainly worth avoiding.

My team consists of individuals with attitudes that reflect this reality. It may not be for everybody. But it better be for the cancer patient. “I don’t know much, but I know that.” (Ben Affleck – out of context, from the movie “Good Will Hunting.”)

Who’s on your team in this fight against lung cancer?

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“This column is my life as one of the fortunate few; a lung cancer anomaly: a stage IV lung cancer patient who has outlived his doctor’s original prognosis; and I’m glad to share it. It seems to help me cope writing about it. Perhaps it will help you relate reading about it.”

Mr. Lourie’s columns can be found at www.connectionnewspapers.com. (key word, Lourie)

Read Kenneth Lourie’s 1st LUNGevity blog post & bio.

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Kenneth Lourie

Instincts

March 8th, 2013 - by Kenneth Lourie

…related to having been diagnosed with stage IV, non-small cell lung cancer, the terminal/“incurable, but treatable” kind, according to my oncologist. The kind whose median life expectancy at diagnosis is eight months. The kind that John Rhys Davis as Sallah from the 1981 movie “Raiders of the Lost Ark” might have described as “very bad,” just as he had described the asps slithering below on the floor of the tomb he and “Indy” had just unearthed. So the news I received in late February, 2009 – such as it was, was never very good. In fact, for an asymptomatic, non-smoking, 54-and-half-year-old male with an immediate-family history of NO cancer, it was, well, “shocking” barely scratches the emotional surface of what I was feeling.

Forty-five months later, I am still dealing with feelings – as in still living, for which I am amazingly fortunate. However, those feelings seem to sometimes have a mind of their own, and accordingly tend to take over and rewire one’s brain (figuratively speaking). Moreover, thoughts, actions and behaviors change, and not always for the better, and rarely for the best; most likely a direct result of the cancer’s emotional wallop. Thoughts you don’t want/ never had seep in despite your best attempts at minding them. Behaviors previously uncharacteristic manage to exert more control than you ever imagined. Actions previously unfamiliar cause one to wonder if who you were – pre-cancer, you will ever be again. You don’t want to lose yourself inside the whole cancer culture, but being told you’re going to die prematurely: in “13 months to two years,” has a way of rewriting your record books, whether you intended to or not. Not giving in to this cancer consequence has been my greatest struggle.

Early on, I remember asking my oncologist: “Is it OK to still buy in bulk?” For all you know, based on much of what your doctor is saying, and what you are sensing, your future is tenuous and extremely unpredictable (a version of the humorous advisory to “not buy green bananas”). I mean, the diagnosis is terminal cancer; “HELLO.” What are you supposed to think? This is how your mind takes over and you sort of lose it/lose control of it. As former Vice President “Dan” Quayle said in a speech to the United Negro College Fund (not about cancer), “What a terrible thing it is to lose one’s mind.” Still, it certainly applies.

Another brain drain has to do with specific events scheduled in the future, a future whose guarantee – for me, has been invalidated. I’m watching television during the summer of 2012 and I see ads for Downton Abbey’s third season premiere in January, 2013, and instinctively I wonder, will I be alive to see it?

Road projects are another example. At the beginning of the construction of the Intercounty Connector in Maryland (a cross-county highway being built near my house), regularly I would be stuck in the project’s related road closures/redesigns and bridge-type flyovers and I would always think to myself: “Am I going to be alive when this project is finished or am I just going to suffer its building pains?”

Next May, the LUNGevity Foundation, the largest foundation in the country dedicated to lung cancer research (and on whose Web site my cancer columns are now being posted) will be hosting their annual “Hope Summit” in Washington, D.C. I have been invited to attend and/or speak. My first thought upon receiving the invite: “Am I going to still be alive in May?”

I want to be positive. I am positive. But cancer is a huge negative. It’s a constant battle of good versus evil. Sort of like the Indiana Jones movies. But this isn’t the movies.

This is real. This is cancer, the true definition of “very bad.”

How do you stay/get positive while living with cancer?  Comment below.

 

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“This column is my life as one of the fortunate few; a lung cancer anomaly: a stage IV lung cancer patient who has outlived his doctor’s original prognosis; and I’m glad to share it. It seems to help me cope writing about it. Perhaps it will help you relate reading about it.”

Mr. Lourie’s columns can be found at www.connectionnewspapers.com. (key word, Lourie)

Read Kenneth Lourie’s 1st LUNGevity blog post & bio.

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Posted in Lung Cancer Survivors | 2 Comments »

A Message to Lung Cancer Professionals

October 15th, 2012 - by admin

Teri Simon, a long-time survivor, author and advocate who passed away from stage IV lung cancer in 2012, gave this speech to an audience of medical professionals last year. We are honored to be able to share it with you.

“On December 2, 2009, I was diagnosed with Stage IV Metastatic Adenocarcinoma of my right lung.  It was a stunning diagnosis, mostly because I had NO predisposing factors for any kind of cancer whatsoever, let alone LUNG CANCER.  Over the next couple of months, as I tried to recover from that shock and became a subject in a clinical trial for Tarceva (yes, I am an EGFR mutant), I recalled an old, old riddle:

Why did the Flying Elephant crash to the ground?

Because somebody told him that elephants can’t fly.

It occurred to me that perhaps one way to survive this Lung Junk business was to combine just the right amounts of realism, denial, and hope together.  Thus, I became a Flying Elephant.

(Teri Simon has written two books, created an active blog and spoke to patients and medical professionals from the viewpoint of someone with stage IV lung cancer)

“In addition to being a Flying Elephant, I am a number of other things:  a mom, a social worker, a friend, a writer, and a Jew.

When I was young, my mom was my Hebrew teacher.  She taught that the central part of a Jewish prayer service, the Amidah, was broken down into 3 segments:  Goodies, Gimmes, and Thank You’s.

Goodies are the sucking up to God part:  God is great, God is awesome, yay, God.

Gimmes are petitions:  Gimme this, gimme that.

Thank you’s are self-explanatory.

So here are the Lung Cancer Goodies:

Man, y’all (medical professionals/researchers) ROCK!  I participated as an audience member in a LUNGevity webinar a few weeks ago.  One of the researchers announced that he’d been working in the field for 15 years, but that it’s been in the past 2 or 3 years that advances have been made at lightning speed.  It made me think back to when I was first diagnosed.  I never asked “Why me?” but I often asked “Why now?”

Lately, I recognize how lucky I am to have been diagnosed now, now when advances and new discoveries are a daily experience, when there have never before been so many treatment options, so many options for personalized treatment.  It’s because of YOUR efforts, YOUR imaginations, YOUR drive, YOUR collaborations.  Like I said before, y’all ROCK!

Now the Gimmes….Y’all, I have a loooooooong list of petitions, but for the sake of time, here are my top 5 requests:

  1. Consider taking tobacco OUT of the lung cancer equation. I spent my life believing that if I never smoked, ate right, and exercised, lung cancer would never happen to me.  Well, I was misled. I was duped. I was wrong.  If I had a nickel for every MEDICAL provider who asked me if I had been a smoker, I’m pretty sure I could pay for a chemo treatment.  Sometimes it doesn’t matter WHY we get a disease, especially when it can’t be UN-DONE.  Sometimes it only matters THAT we have the disease, and what we’re going to do about it.  The smoking stigma doesn’t help, in fact, it hurts.  A lot.  As if I deserved this….Anyway, please consider taking tobacco out of the equation.
  2. Appreciate your study subjects, especially in Phase I trials.  These people are literally risking their lives to help make a difference in someone else’s.  This deserves gratitude, reverence, attention, and kindness.  Your advances are spectacular, but they’d be impossible without those brave study souls.
  3. Collaborate your efforts and check your ego at the door! You’re brilliant and dedicated; that’s undeniable.  But if you work in a bubble and insist on things being “my way or the highway,” you will never appreciate the fullness of discoveries that only happen through sharing.  Researcher A might have part of a question answered, but without Researcher B, the rest of the question remains a mystery.  Work together and ALL of you can get the Nobel Prize you deserve!
  4. Don’t forget  your humanity.  You have lives, your subjects have lives, your patients have lives.  Those lives now intersect.  Lung cancer sucks.  It’s scary and painful and deadly.  You might be immersed in numbers and facts all day, but your patients, well, they’re only living THEIR lives, so your “old” information is “new” to them.  Please try to remember that in your interactions.  To you, it may be all numbers.  To us, it’s our lives.  Your compassion is VITAL.  Truly.
  5. Care for one another.  The only way we, any of us, can manage through this lung junk is if we support one another.  The day you experience a clinical triumph may be the very day a colleague suffers the loss of a patient.  You know it happens like that.  I encourage you to support one another, celebrate together, mourn together. It’s how you’ll keep the drive to keep going.

So now, the Thank you’s.  This is the really easy part:

Thank you for getting up every day and being willing to beat your heads against a wall of frustration.  Thank you for hoping against hope for your patients.  Thank you for thinking outside of the box to get the job done.

Thank you for your passion, compassion, brilliance, drive, and ability.

We appreciate you.  Please don’t stop.”

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Susan C. Mantel

Celebration of Science and Keeping the Party Going

September 19th, 2012 - by Susan C. Mantel

I recently spent a remarkable weekend seeing the results of two decades of investment in scientific research across many different areas of healthcare. This amazing event, called “A Celebration of Science” was organized by Faster Cures, and included 1,200 attendees from 200 organizations. Participants represented the NIH, NCI and other public and private research institutions; the FDA; leading advocacy groups; patients who shared the impact of scientific advances on their lives; philanthropists; the pharmaceutical, biotech, and device industries, and many of our elected representatives.

The week-end was designed to “honor individuals whose work saves, improves and extends lives, and those who make that work possible,” including patients who participate in clinical trials and those who share their stories. Above all, it was designed to really make the case for why investing in research is a smart decision in any economy. Research creates jobs in the lab and through new types of science-related businesses. Even more importantly, by saving lives and improving quality of life for those affected by various diseases, it results in a more productive workforce and society.

Like all of us in the lung cancer trenches, I want progress in lung cancer to be much further and faster than it has been, and I remember thinking the first afternoon–when I saw the statistic that the overall five-year cancer survival rate is now 66%–“lung cancer is still so far below that.” But being with all of these brilliant people dedicated to making life better through science, hearing how thoughtful and determined they were to continue innovating along all the aspects of the scientific continuum, and seeing some honest-to-goodness breakthroughs gave me so much hope! I was also reminded of how all these advances build off each other.

For example, the cost of sequencing the human genome the first time was about $3 billion and took over a decade. Now it’s less than $10,000 and takes a couple of weeks, with $1,000 sequencing in days in sight. This is turning the conversation to “precision medicine,” which was brought vividly to life by a set of twins who were successfully treated for a genetic defect—going from minimal muscle control and other grave challenges as children to competitive teenage athletes today.  Then a couple of days after the meeting, the squamous cell lung cancer findings from the Cancer Genome Atlas were published.

Until this year, most of the advances in lung cancer treatment through targeted therapies were happening in adenocarcinomas. With about 400,000 people dying of squamous cell lung cancer worldwide each year, this is another area of urgent need. And more than 60% of the tumors had mutations that are potentially “druggable” with medicines in development for other cancers. So, we have new information with which we can potentially DO something. The “what” has a “so what”.  Furthermore, this form of lung cancer is only the second common cancer type for which a genetic analysis was performed as part of the Cancer Genome Atlas. Attention is being paid!

The Celebration showcased so many other tremendous advances, including in fields like HIV (did you know about “the Berlin patient”—the first known case of someone cured of HIV?), brain imaging, and research and rehabilitation of our wounded soldiers. Yes, these areas all still have unmet needs, and we have miles to go in areas like Alzheimer’s, traumatic brain injury and PTSD, and, of course, lung cancer.  Ultimately, though, we are living in exciting times of progress and collaboration, where continued investment in research is yielding progress of which generations before us could only dream. I can’t wait for the “Amazing Advances in Lung Cancer” session at the “Celebration of Science” event of the future!

Susan C. Mantel

 

 

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