Posts Tagged ‘spirit’

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

Writing What Four

April 22nd, 2013 - by Kenneth Lourie

 

As far as anniversaries go–and I hope this one “goes” a lot further; acknowledging, dare I say celebrating my four-year survival anniversary from “terminal” stage IV (inoperable, metastasized) non-small cell lung cancer, a diagnosis I initially received on Feb. 27, 2009, along with a “13-month to two-year prognosis” from my oncologist, is certainly column-worthy.

Not that I haven’t mined these emotional depths before–end of years one, two and three if truth be told, but I’m sure I can be given a pass, given the subject matter. And what matters more than a characterized-as-terminal cancer patient outliving his prognosis by years? Not too much, from my perspective. Quite frankly, this is the content of a column I can get used to writing repeatedly, if need be, and I’m hoping the need be. Oh, I don’t suppose I’ll be recycling material from previous anniversary columns, even though the sentiment would be familiar: amazing good fortune, gratitude, anxiety concerning an unpredictable future, etc. Nevertheless, I’ll risk expressing some feelings here that might be somewhat reminiscent of columns and anniversaries gone by.

Being diagnosed with lung cancer two and a half months after my widowed mother succumbed to her old age–thereby making my brother Richard and I orphans, as it were (my father had died two years earlier, almost to the day of my mother’s passing)–seemed a bit unfair, especially considering how much my brother and I had sacrificed as we cared and concerned ourselves with the last years of our parents’ less-than-ideal lives. But “fair” has never really entered into my equation. That’s not how I look at things. I look at things the way I’ve heard (on sports talk radio, anyway) how football players describe their attitude toward a starting player being injured: “Next man up.” There are no excuses. It’s not exactly poker, but you play the cards you’ve been dealt. And so, in my four years of living with cancer since February, 2009, I have not pursued justice, nor have I declared my independence, but I have tried to live my life with good humor–and liberty and happiness when I could manage it.

Not always have I achieved these goals or maintained the balance necessary to counter the emotional weight and physical toll receiving a terminal diagnosis–and the treatment protocol–can impose. I’ve had my moments, to be sure, but overall, I’m proud of how I’ve changed for the better and persevered. Though cancer has proven over the years to be an equal-opportunity-disease, my diagnosis has never caused me to feel doomed (a little gloomy, maybe). Moreover, I’ve always felt hopeful and as such have tried to be proactive, open and compliant in order to give myself every possible advantage in this life yet to be lived.

Woe is not me. Why is of no concern. How it could have happened is of no particular interest. Reviewing my past transgressions never mattered to my oncologist. His only concern was the future and treating me forward. For the most part, I have embraced that/his philosophy, except at this time of the year: my still-living-with-cancer anniversary when I revisit the past–hopefully as a prelude for the future. That’s my intent, anyway.

Do you mark your “cancerversary”?  If so, how?

_______________________________________________

“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 | 3 Comments »

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

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.

 

____________________________________________________________

“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 »

Juhi Kunde

Challenges Abound, Yet We Remain Strong

January 14th, 2013 - by Juhi Kunde

As we are starting a fresh year, it is natural to take a step back and survey the scene – past and present.  How was last year? What chaos and wonders will this year bring?

As always, I look on the past year with a general sense of bewilderment and awe. We lost Whitney Houston, Andy Griffith and Ravi Shankar. And who could have imagined the horrible tragedy in Newtown, Connecticut? The year is never what we expect it to be.

But last year, even in the middle of all that uncertainty, we found happiness, courage and hope.  I would have never thought that the San Francisco Giants would win another World Series so soon. We saw a magnificent display of talent at the London Olympics and we held another peaceful (and tight) presidential election.

This year, I see the challenges piling as high as the Rocky Mountains. We have healthcare worries, economic concerns and of course, a royal baby to worry about. Plus we all have our unique personal challenges looming ahead of us. In my family, we are expecting our own baby in April and we are helping a beloved family member fight cancer.

Despite my concerns for the coming year, I am filled with feelings of hope, confidence and determination because the people around me are not drowning in their worries. They are embracing the future and facing their challenges by taking steps to alleviate problems and improve their situations. People in their fifties are going back to school, parents are homeschooling their children, and a few families have joined health clubs while cancelling cable subscriptions.

For lung cancer survivors and caregivers, similar patterns are emerging. People are listening to scientific webinars, reading about clinical trials and taking charge of their treatment plans. They are stepping forward to become their own health care advocates and to raise lung cancer awareness.

Plus, with the help of determined volunteers, passionate supporters and skilled scientists, the lung cancer movement continues to gain momentum and brings us closer to major breakthroughs in early detection and treatment.

By continuing to actively participate in our lives, we are all facing the challenges that lie before us.Let’s rely on our communities, be resilient and not let our worries drown us. By working cooperatively we may just succeed in beating the odds.

Let’s all try to make 2013 the year we hope it’ll be.

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