Posts Tagged ‘cancer survivor’

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 »

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

 

Share this:

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

Kenneth Lourie

Selfless or Selfish

May 1st, 2013 - by Kenneth Lourie

Just in case anybody is paying attention, and my behavior plays some kind of role/has any effect on my outcome whatsoever, I’d just as soon be one more than the other.

However, receiving a terminal cancer diagnosis (stage IV and let me remind you there’s no stage V) out of the blue at age 54 and a half, less than three months after burying your widowed mother, tends to upset this delicate balance. If I’ve heard it once – since my diagnosis – I’ve heard it multiple times, and from trusted, respected sources: “It’s all about you, Ken.” And when the oncology nurse sticks that needle in your arm for the first time and then hooks you up to a six-hour I.V. drip containing chemotherapy drugs “cocktailed” to poison you (kill your tumor-carrying white blood cells actually), the decision about whom to care about most, you or someone else, begins to take on a life of its own.

Controlling that other life has become one of my biggest challenges.

It’s very easy to lose yourself in the midst of a metastatic malignancy when your oncologist gives you “13 months to two years” to live. For all anybody knows, it’s your attitude or even your personality that keeps you alive as your treatment ramps up. However, thinking and doing for others is extremely difficult at this time, a time when you can barely get out of bed. Chemotherapy has a way of leveling the playing field: You can’t do anything for anybody, least of all for yourself.

As you begin to bounce back after your treatment (if there is an interval), you semi-regain your composure in anticipation and preparation for the next infusion. Nevertheless, before too long, the mental demons begin to take hold yet again, attempting to tear down every emotional underpinning you’ve devised. No one said it was going to be easy. In fact, one of our best friends, Lynne, a recent breast cancer survivor said quite the opposite: “Ken, this is going to be the hardest thing you’ve done.” Of course, she was 100 percent correct.

Over time and over treatment, you begin to assimilate the demands: the infusions, the frequency, the doctors’ appointments, the diagnostic scans, the lab work, the side effects, the straight-on effects, the highs, the lows, the hopes, the prayers, the statistics; until it becomes, at least for me it has, sort of mundane and part of a process that takes over your life – for some very unfortunate reasons. You accept it because: it appears there are very few exceptions. Cancer rules and thinking it doesn’t is disrespectful almost and incredibly naive.

Giving respect to such a dreaded – but previous to my diagnosis, not a part of my family’s history – disease, helped guide me back to becoming more selfless and less selfish; understanding that reclaiming that dignity and integrity in this context anyway, can have a powerful effect on both myself and those around me, which in turn works back to me (the old what goes around comes around-type karma) and ultimately benefits and enhances my life.

The longer I’ve survived with this diagnosis, the more characteristic of the pre-Kenny-with-cancer I’ve become. That’s not to say that I don’t occasionally slip and fall – emotionally, but now, getting up is not nearly so difficult. I’ve been there, and I’ve done that. Besides, I’m happier being me, and happiness can work miracles.

 

For those living with cancer, how do you balance taking care of yourself and being there for others?

 

____________________________________________________________________________________

“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 | 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 »

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!

Share this:

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

« Older Entries