Posts Tagged ‘stories’

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

 

Share this:

Tags: , , , , , , , , , , , , , , , , , , , ,
Posted in Lung Cancer Survivors, Testimonial | No Comments »

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.

Share this:

Tags: , , , , , , , , , , , , , , , , , ,
Posted in Lung Cancer Survivors | 3 Comments »

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.

____________________________________________________________

“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.

Share this:

Tags: , , , , , , , , , , , , , , , ,
Posted in Lung Cancer Survivors | Comments Off

An Attitude of Gratitude

February 20th, 2013 - by admin

By Sue Bersh

“The ship of my life may or may not be sailing on calm and amiable seas. The challenging days of my existence may or may not be bright and promising. Stormy or sunny days, glorious or lonely nights, I maintain an attitude of gratitude. If I insist on being pessimistic, there is always tomorrow. Today I am blessed.” ― Maya Angelou

 If I had to sum myself up in one sentence it would be: I AM GRATEFUL.

There is nothing I am more grateful for than my husband and three incredible sons – each is a dream come true. My gratitude list is a long one – so many people and experiences that have made me who I am.  I have learned that even out of sadness and hurt can come blessings.

When I was 15 years old, my Grandma Harriet died of lung cancer. My twin brother and I were her only grandchildren. We spent lots of quality time with her, and she adored us. Her life ended much too early, but to this day I feel extremely connected to her, and I am grateful.

When I was a sophomore in high school, my closest friend told me she didn’t want to be my friend anymore, and I was heartbroken. A few months later I found a new group of friends who have remained my friends for life, including my friend Elyse. Out of heartbreak came lifelong friends, and I was grateful!

Seven years ago Elyse was diagnosed with lung cancer. I intimately shared in her illness and treatment and watched her hopelessly fight a disease with a 15% survival rate (not much better than when my grandma died 30 years earlier). I don’t think I will ever be able to fully share what this experience was like, but suffice to say that I was changed forever by it. And although it was devastating to watch, I am grateful for what we shared, which equated to a lifetime of love and friendship in the 2-1/2 years that Elyse battled this insidious disease.

Call it fate or karma – whatever it is – I truly believe that all of our experiences, big and small, and our relationships build on each other to put us on our destined path with the people we are meant to be with. Hopefully this path will lead us to doing good and living a life true to ourselves.

I have found my path in my involvement with LUNGevity Foundation. I am proud to be a board member, and last year I organized my first Breathe Deep fundraising event (with the help of many good friends and LUNGevity supporters) in the community where I grew up and still live today, Deerfield, IL.  Over 1,300 people participated last May, and we raised an unbelievable $140,000. We engaged a community in an important cause. A few months later, Deerfield High School chose LUNGevity as the beneficiary of its annual School Chest fundraiser. These extraordinary kids raised over $135,000 in three weeks to fund lung cancer research, and they inspired many, many people to care about lung cancer. I’m not sure any LUNGevity experience will top what I was fortunate enough to share with those remarkable teenagers. I am eternally grateful!

As we plan our next event, Breathe Deep North Shore, I am grateful for a community that has opened its arms to LUNGevity. They have put the stigma aside and truly understand that lung cancer is a fight that needs to be everyone’s. Lung cancer takes more lives than breast, prostate and colon cancers combined; it is destined to touch us all. I have never been more passionate about anything in my life than this cause.

 I am particularly grateful for the friends I have made on this journey, especially my friend Jill. This 43-year old, non-smoking mom of four is the new face of lung cancer. I love her and admire all that she does to advocate for herself, her family, and this cause. Jill, along with my friends Jerry, Lynda, Mary, Patti, Heather, Tracy, Barb, and others battling this disease, are the reasons I am in this fight for the long haul. They need treatment options, and they and their families deserve hope.

We all should celebrate life, especially when faced with challenges and loss. We need to be passionate about what we believe in and love hard because every day and every person in our lives truly is a gift. We need to find our destined path and make a difference in others’ lives. We should give of ourselves in a way that fulfills us and BE GRATEFUL for the things that matter most.

I am grateful to have found LUNGevity. It has helped me heal and find meaning in a terrible loss. Join me on my journey and maybe it will become yours too (or at least inspire you to find your own). If you live in the Chicago area, join us for Breathe Deep North Shore, a 5K fun run, one-mile walk and balloon launch on April 28th at Deerfield High School. Join my team, Elyse’s Legacy, Jill’s Team, Just Breathe, another team, or start your own. Register or donate today, and share in a day of meaning and hope.

WE can make a difference in the fight against lung cancer.

 

Share this:

Tags: , , , , , , , , , , , , , , , , , ,
Posted in Events | 1 Comment »

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.

Share this:

Tags: , , , , , , , , , , ,
Posted in Why You Should Care | Comments Off

« Older Entries