Posts Tagged ‘cure’

A Boulder of Hope

May 13th, 2013 - by admin

by Anne Gallagher

I recently returned from LUNGevity’s 3rd annual Hope Summit.  It was a truly powerful experience and I find it difficult to express how much this event means to me.

I spent a few days in Washington DC afterwards and visited the Martin Luther King Jr. Memorial.  Imprinted on the side of his statue is the saying, “Out of a mountain of despair, a stone of hope.”  I feel like this sums up Hope Summit however I might call it a boulder instead of a stone.

All of the attendees who go to Hope Summit have been through so much and there is a depth of experience in that room that is felt very deeply.  I attended the HOPE Summit for the fist time last year and that was my first opportunity to sit and talk to survivors like myself.    This year it felt like reconnecting with family and meeting some new family members.   This year’s event left me with the courage and hope to face another year.

HOPE Summit was an emotional weekend that leaves me filled with a fire to continue fearlessly.  I really wish that the rest of the world could look into this room and see that there are lung cancer survivors who are not only surviving but they are thriving.  It is a room of inspiration and most importantly hope.

As a patient navigator I always encourage patients to find a support community and I would highly recommend this event to any of them.  I know that many of the patients I see would greatly benefit from this event.  Hearing the stories of the others in the room and seeing so many advanced stage patients who are years out from diagnosis is truly remarkable.  Not only does this event provide a support community but it provides patients with practical knowledge.  There are speakers who talk about pulmonary rehab and breathing techniques, nutrition, exercise, advocacy, communication, surviving with disease, research, and managing side effects.  It arms patients with tools to go home and be able to manage their disease and lives better.

There was a welcome reception on Friday evening and within moments the room was abuzz with conversation.  People from all of the country sharing their unique experiences which are also so similar.  Everyone has their own story to tell but many of the experiences are the same and most importantly the feeling is the same.  Everyone in that room understands how scary it is to hear that you have lung cancer and there is an instant connection between survivors and caregivers alike.  The staff of Lungevity is around and it is easy to tell that their hearts and minds are in the right place.  They are focused on survivors, hope, and research.  It was a weekend of hugs, support, strength, education and hope.  It was difficult to say goodbye but when I did and I said to so many, “See you next year”, I was able to mean it.

This event gives me the hope to believe that that will happen!

For more information on LUNGevity’s HOPE Summit, please visit www.LUNGevity.org/hopesummit

 

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Looking Forward to Next Year

May 13th, 2013 - by admin

by Randall Broad

This past weekend I had the privilege to attend the third annual LUNGevity Hope Summit (HS) in Washington DC.  For those unfamiliar with the event, this is where LUNGevity hosts a two-day (plus an opening evening mixer) for 120 of your closest lung cancer (LC) friends and colleagues.  Being my second HS, that makes me HS alum.  A chevron I wear proudly on my lapel (or anywhere else it may attach).

Last year being my (and approximately fifty others) first, I was pleasantly surprised to see our numbers at this event double in size.  I realize this sounds off to say I’m glad to see we doubled in size seeing as to grow this number requires association to either having or caring for LC; a gift you wouldn’t subject your deepest darkest enemy to.  What I mean to say here is IF you have LC and/or care for someone afflicted with LC and are capable of flying to DC for a weekend, a better and more enlightened group of individuals you will most likely never encounter.

I’ve had a few days to reflect upon the experience from this year before submitting my thoughts this go around.  Having done so and let ‘Hugs for Lungs’ moment’s sink in, I am now in a better position to provide first hand input from the experience.

For me, it was wonderful to see many of last year’s attendees.  Honestly speaking, this was my shining highlight of this year’s event.  For the newbies (as Katie the amazing Brown so affectionately refers to the first time Summiter’s), there is much emotion behind this aspect of evaluation as there were several of last year attendee’s not in attendance this go around.  Not because they didn’t raise the necessary travel funds, couldn’t afford the trip, or were busy doing something else.  They were not with us because they are no longer with us.  The cold hard reality many of us face on a day-to-day basis living with the disease.  When Andrea shared this aspect in her opening remarks and was overcome with emotion, I know I speak for the other alum’s, we were right there with her.

I will forego and spare the reader a detailed and formal evaluation of the Summit as we were all given the opportunity to provide this onsite.  Doing so would prove redundant and immaterial.  That said, I do want to draw attention to a piece of the program that I for one found to be extremely informative, worthwhile and most of all, enlightening.  I’m referring to the second day morning presentation with David Carbone, MD PhD.

Carbone proved once more how much of a comedian God can be.  After all, here’s a guy who dedicates his entire life and being to dealing with and treating LC only to become a fellow recipient of a cancer diagnosis.  As if he is so empathetic towards his patients he contracts the disease by osmosis.  And then God has the audacity to have him not only experience the very treatment he prescribes but keeps him alive long enough to empathize, continue to treat and research and gifted enough to share the experience.  I’m literally rolling in the aisles on this one…Oh my, God you should be doing stand-up!

I must say, when the good doctor shared the gory details of his treatment, I could have probably done without the depth therein.  After all, most of us in the room have lived that horror and the not so gentle reminder of the garden hose sticking out of my side draining pink lung-aide into the silver trough below my wheeled and propped up hospital bed (I’ve done my fair share of meditation to let go of that one).  The depth of description however did ensure his attentive audience knew full well this doctor is different because he has literally walked the cancer walk.  A two-step I believe few practicing oncologists neither knows nor cares to know the actual steps to.  Doctor Carbone leads the orchestra on this one and the lung cancer world is better off having the baton in his all too knowing and capable hand.

This is such a special gift that has been bestowed upon Carbone it’s hard to fathom.  To know what he knows through his years of studying and learning along with what the LC patient knows from personal experience is not to be taken lightly.  This combined with the ability to continue to work in the very field is extraordinary to say the least.  And to continue to get up every morning, pull his pants on a leg at a time and work in this field is nothing short of amazing and a demonstration of fortitude and dedication.  I for one am a fan and could have listened to him present both sides of the equation for the better part of the entire day.  The question and answer period would most certainly still be active if we continued in the same room.

Without a doubt, the number one take-away for me was not centered on the topics of EGFR mutations, ALK, clinical trials, types of disease, etc.  No, for me, the biggy was him sharing snorkeling off the Great Barrier Reef, his family, his personal photos, and his living life.  This is the clarion bell ALL LC patient’s share and knows the precious truth that life is short and if given a second chance, you take it.  Pure and simple and this aspect of his presentation put it all into perspective.  I absolutely loved it!

And to know that he’s on the LUNGevity Scientific Advisory Board once more puts feathers in their cap and arrows in their proverbial quiver.  I don’t know why I continue to be surprised by such uncovering’s around this organization, but I do.  LUNGevity is so buttoned down you need four thumbs and an equal number of index fingers to take off the gown.

In closing, to say it was an uplifting and memorable weekend goes without saying.  What I will say however is what occurred on the flight home Sunday night; I was seated in an exit row on the aisle of a completely full Boeing 737.  I put on my headphones and cranked up my iTunes to full force and played every rock till you drop song I could find.  In the process, I guess I got a little carried away as people in front and side kept giving me a look.  Four songs in, the guy two seats over reached across my neighbor and tapped my shoulder politely with a smile and said, ‘I promise not sing to you if you promise not sing to me.’  He was even wearing headphones…I guess I was a bit jazzed from the weekend.

I look forward to seeing everyone next year and sing you a song as well.

For more information on LUNGevity’s HOPE Summit visit www.LUNGevity.org/hopesummit

 

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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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Kenneth Lourie

A Pill A Day

February 22nd, 2013 - by Kenneth Lourie

Hopefully will keep the cancer at bay. (I’d say “away,” but let’s be realistic, three and a half years past a NSCLC diagnosis, there is no way, generally speaking, that stage IV lung cancer disappears into the ether; it’s classified as stage IV for a reason. However, there are many – and varied – non-traditional and not particularly Western and/or A.M.A./American Cancer Society-approved alternatives to fight this insidious disease, many of which, about 20 or so, I have incorporated into my overall treatment regimen. Moreover, if my continuing survival reflects anything, it is an affirmation of what former N.C. State basketball coach Jim Valvano said in 1993, in one of his last public appearances before succumbing to bone cancer, on ESPN’s inaugural ESPYs Award show, as the first recipient of the “Arthur Ashe Courage and Humanitarian Award”: “Don’t give up, don’t ever give up.” And so I haven’t.)

Besides, where’s the future in giving up or giving in? That’s not to infer that the last few years haven’t been incredibly challenging, because they have. Emotionally for sure, physically not quite as much. Although chemotherapy is all it’s cracked up to be; some treatment (drugs) were definitely worse (side effects/quality of life) than others. Fortunately for me, amazingly in fact, through it all, I have been relatively asymptomatic with minimal/manageable side-effects and zero hospitalizations. Nevertheless, cancer’s reputation as a killer is well-documented and hardly the kind of diagnosis one can ever take with a grain of salt – maybe better taken with a grain of alcohol.

Every day, every doctor’s appointment, every scan, every time you have your blood drawn, every change in how you think and how you feel, relate to the undeniable fact (and believe me, I’ve tried to deny it; it’s a good defense/self-preservation mechanism) that you (meaning me) have cancer, and not just a garden variety, but rather the incurable kind, according to my oncologist: stage IV. Defined as metastasized, inoperable, with a “13-month to two-year prognosis.” (Given to me late February, 2009.)

But here I am, still. I have outlived my prognosis (but hopefully not my usefulness) by a significant – to me, length of time: years, depending how you calculate. However, does that significance move me closer than ever to the end of my writing all these lines? I don’t want to think that, but whatever cancer does to you physically, it’s equally bad – in my experience/opinion on your mind/thought process. Thinking straight, thinking clearly, thinking objectively, thinking unselfishly; all become collateral damage as a result of your cancer diagnosis. Fighting through these difficult-to-control emotions is the bane of my existence, an existence I’m lucky to still have. My next CT Scan is in September, two months after I will have been taking my daily “targeted therapy” chemotherapy-type pill. Then I’ll know how I really feel. Until then, life goes on. And so far, this pill seems not to be making a bad situation any worse; a non-side effect for which I am extremely grateful.

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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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