Posts Tagged ‘partnership’

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?

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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 | 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 »

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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Kenneth Lourie

A Life Worth Living, Still

January 3rd, 2013 - by Kenneth Lourie

It might be my age (as in getting older), or it might be the fact that I have cancer (you think?), but my brain and the related physical and mental tasks it coordinates are not exactly working at peak efficiency.

Don’t get me wrong, I’m not exactly “Forrest, Forrest Gump,” but plans are not easily made and when they are made, not so easily or successfully carried out. Whether it’s a drive to an unfamiliar destination, time spent with semi-unsuspecting (about me) acquaintances, or overnighting away from home (and out of my routine: alkaline water, pills, asparagus, baking soda, apple cider vinegar, etc.) as a few examples, what once seemed like ordinary and manageable acts of everyday-type life now present previously unfamiliar hurdles. Talk about making something out of nothing. Everything is something, even if it’s nothing. And that’s a change – for the worse.

Unfortunately, knowing this – and accepting it, hasn’t lessened the burden and inevitability of living with it. I’m always relieved when whatever, wherever, however, we (meaning me) finish what we’re doing: get to where we’re going/solve the problem we’re needing to solve/arrange the schedule we’re attempting to arrange, and complete our miscellaneous activities. I can then settle back into what’s familiar and relatively uncomplicated. If I’ve been there and am accustomed to doing it, it gets done, without much ado.

However, if I haven’t been there – literally and figuratively, getting there – and back, becomes increasingly more difficult. I don’t necessarily want to blame this behavior on my age or my underlying problem (“NSCLC”), but at least if I blame it on something that makes sense – to me, I can live with the consequences of this preferred inaction. And the more I understand the reasons for certain “inaction,” the less stress I’ll feel. And the less stress I feel, the better off I’ll be; as a cancer patient, first, and as a reasonably intelligent adult second (no comments from the peanut gallery, please).

I guess what I’m trying to do is what Jerry, Elaine, George and Kramer were competing to do years ago on a particularly memorable “Seinfeld” episode: master my own domain; trying to control the uncontrollable. However, if any set of circumstances is likely uncontrollable, it is the physical, mental, emotional and spiritual effects one experiences after receiving a terminal diagnosis. You’re either ready for its demands or you’re not. It’s not like – at least for me, there was really any preparation or expectation that your life – as you knew it, was over.

I suppose there’s a handbook somewhere. (Maybe there’s even some training or a class – Cancer 101, you can attend.) And though I can certainly appreciate the benefit and power of the written – and read word, a terminal diagnosis with a “13-month to two-year” prognosis requires – in my opinion, a more personal touch, one with a one-to-one/face-to-face-type connection.

When the diagnosis is stage IV-serious, it’s best to leave nothing to chance and/or misinterpretation. As much as you – as the patient/”diagnosee” think you’re hearing and/or reading what’s being said or handed to you concerning the facts of your case, the shock of what you’re learning will not only cloud your judgment, but rewire your brain, emotionally speaking. It’s hardly another day at the office. In fact, it’s like no other day you’ve ever had at your office or any other office. The assimilation – or rather the attempted assimilation of your diagnosis, prognosis, treatment options, schedule of diagnostic scans and doctor appointments, best and worst case scenarios, will forever change the way you process information and plan your future.

What I’m finding out is, the longer I survive, it’s the emotions I feel about having cancer more than the facts of having cancer that are causing me the most problems.

One I can live with, the other is living with me. And it’s not of my own choosing, either.

Share your thoughts with us below. How do you live with the emotions that accompany being a cancer survivor?

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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 | 1 Comment »

Jill Feldman

The Critical Battleground Community ~ Young Voices

November 19th, 2012 - by Jill Feldman

Leading up to the election and for a few days after I was obsessed with the absurd amount of time, energy and money spent on the presidential election. I just kept thinking, all that campaigning and now what? What if 1/4 of those resources were spent on raising awareness or money for lung cancer research? Do 1/4 of Americans even know that November is Lung Cancer Awareness month?

 Like most Americans, I followed the election the night of November 6th as different states were colored red or blue. I was particularly interested in the battleground states and the significance of winning those states for each candidate. It was also interesting how much emphasis was put on the importance of people getting to the polls and voting, especially for certain groups. The young voters, the future of our country, played a key role in the election.

Lung cancer isn’t much different. The opposing candidates are Lung Cancer and Life, and there are various ‘battleground’ communities in this campaign including, government, general public, medical professionals, patients, and caregivers. Young voices also play a critical role in this campaign.

  • The government has already shown us that lung cancer is not a priority, therefore, Lung Cancer wins that community.
  • Lung Cancer wins the general public because just like those who choose not to vote, the majority of society, for various reasons, chooses not to take a stand against lung cancer.
  • The medical community is split because there are still many medical professionals that perpetuate stigma and/or believe the disease represents nihilism.
  • Life clearly wins the patient and caregiver community, although there are still patients and caregivers that feel shame or are too sick to advocate for themselves, their disease and change.

That leaves the young voices — the critical battleground community that could compel others to rethink lung cancer. This is a community that can incite change by caring about the WHAT (what are we going to do) not the HOW or WHY (how or why someone gets lung cancer).

There is an insightful group of teenagers in the young voices community who have chosen to vote Life and lead that campaign. Deerfield High School, in Chicago’s northern suburbs, organizes School Chest each year, a three-week-long charity drive that unites students, teachers and residents behind an organization with a cause they believe in and connections in the community. LUNGevity Foundation was chosen as the 2012 beneficiary.

I can’t put into words the respect and admiration I have for these students. They recognize the impact and reality of lung cancer. They understand that we need to get past the blame game, and they know that anyone can get lung cancer. These teenagers are proud to stand up to lung cancer, and they do so with determination and conviction. They vote Life!

As a lung cancer patient and Deerfield mom of four, I am touched and completely awed by the students of Deerfield High School. They will help give lung cancer a much needed voice, and theirs will be loud. There won’t be a stigma to erase if this community understands the REAL story. They will make a difference — and that gives me so much hope for the future – for Life!

You can watch these amazing teenagers in action, and donate to their tireless efforts, by visiting www.lungevity.org/schoolchest & www.facebook.com/schoolchest2012lungevity.

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