Posts Tagged ‘alliance’

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

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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It’s what we do next that matters

January 3rd, 2013 - by G. Alan Rader

My name is Alan Rader. I live in the country about 15 miles northwest of Harrisburg, Pennsylvania. I was diagnosed with stage 3 lung cancer at the age of 59. Like many survivors I’ve come to know, I was misdiagnosed for a few months before the pieces were put together. The results of a CT scan showed a mass at the peak of my right lung. The primary care dr. set up an appointment for me to see a surgeon who could see me in a month. I have to say that I wasn’t surprised about possibly having lung cancer. I was emotionally numb about it. I went to work the next day, I had to finish a job I was doing. All I knew about lung cancer was that it would kill me. I lost an aunt to lung cancer and it happened fast. I lost my father in law to lung cancer and happened slowly and painfully.

We weren’t about to wait a month to see a surgeon and lose even more time. My wife Susan spent part of that day researching what we could do now. She found Cancer Treatment Centers of Americas’ website during her search and called the 800 number. She talked to a guy who said they could see us on Monday. They recognized our sense of urgency.  That got our attention and we went to Philadelphia to see what they could do. It turned out to be a great decision.

My cancer was inoperable; it had worked its way into my spine and a rib. They called it stage 4 because it invaded a vertebral body. Others called it stage 3 because it was one tumor. I went through 30 radiation treatments and 20 chemotherapy sessions. A month after the treatments were complete they did another PET/CT to see where we were. Surgery was still out of the question, the proximity to the spinal cord made it too dangerous. I probably would be paralyzed. Cyberknife and 6 more chemo sessions finished it off. January 2010 it was NED and has been to this day.

During treatment I really had no significant painful side effects. I had no nausea. I did get fatigued and I did get dehydrated and I lost all my hair, the usual things I was told to expect. The doctors and nurses all did a great job, they seemed to have all the bases covered and made me extremely confident about the care I was getting. They did offer physical therapy and I strongly recommend doing that during treatment. It kept me in good shape; I learned breathing techniques and the importance of maintaining strength. They also offered acupuncture which they did often and sometimes during my chemo sessions. The only real challenge I have since is dealing with a severely damaged ulnar nerve. I am right handed so I’ve had to learn to live with that small inconvenience. The cancer had eaten almost 43% of the T1 vertibra.  I learned so much about lung cancer through all of this, things I never would have known.

I was a smoker but I had quit almost 5 years prior to my diagnosis. The industry I was part of also wasn’t conducive to great health either. I saw many of the guys I worked with pass on not long after their retirement from one lung disease or another. That’s why my diagnosis wasn’t a shock to me. What got me through the initial part of it was remembering that it’s what I do next that matters. The other stuff is history. During Lawrence Taylors’ acceptance speech at the pro football hall of fame, he said that a champion is determined by not how many times he’s knocked down, but how many times he gets back  up. I heard that many years before I got cancer, but I drew inspiration from it. I also was inspired by Jimmy Valvano’s speech at the ESPY awards long before I was diagnosed. It is available on YouTube or Google it, it’s a must-see speech.

People I meet sometimes start out with the smoking question. I’m not disturbed by it at all.  I understand the stigma associated with lung cancer and its connection to tobacco use. I use it as an opportunity to educate that person about the fact that almost 60% of new cases are nonsmokers and people who quit many years ago. Sometimes they are interested and sometimes I feel like I’m talking to the wall. Like I said before, it’s what we do next that matters. I do wish that everyone understood how many people are lost to lung cancer and how underfunded the research is. Perhaps it takes a loved one being diagnosed to raise awareness.  The fact is that 1 in 14 people will be diagnosed with lung cancer.  That is one reason I work to inform people about this disease, to increase funding for research and treatment.

Cancer Treatment Center of America has kept me involved in survivorship programs. I sometimes meet with new patients at the Philadelphia hospital. I’ve been part of their Patient Advisory Council. We are a group of survivors from their different hospitals. We meet in those cities, tour the hospital, talk to patients there and find ways to make the patient experience as good as it can be. We have made a difference and examples can be found all over the place. It is a hard job as everything is covered very well already. Our group has visited 3 of the hospitals with 2 to go. This torch will be handed over to a new group and the task will continue.

They asked me to be in one of their commercials which I did gladly. It is airing all over the country and has achieved results. I have met people in Philadelphia who told me they saw it and made the call. That’s what we did and I’m a survivor. They do really great things there and I’m proud to be a part of their efforts in the fight against cancer. I also take part in a program called the Patient to Patient Network. A new patient is offered an opportunity to speak with a survivor who has “been there, done that”. It’s very rewarding when I find out that someone I spoke with, sometimes for hours, made a decision to come to CTCA and is doing well. I’ve talked with well over a hundred cancer patients and look forward to seeing them in Philadelphia when our paths cross. These things keep me focused; I want all cancer patients to have good results. They do try to forward lung cancer patients to lung cancer survivors but we do speak with patients with other types from time to time. We aren’t giving medical advice or solutions, we’re trying to help them understand the treatment model and how their initial visit will happen. It helps ease their anxiety about traveling and those things. It has been very rewarding.

I read a full page ad about LUNGevity in the spring issue of Cancer Fighters Thrive magazine one day in the spring of 2011.  I checked out the website and joined immediately. The support group has been wonderful there. I posted my news now and then and I’m sure I ruffled a few feathers from time to time. I did get responses from survivors who had the same type of tumor that I did. Donna from the Minneapolis area was the first to answer and Kasey from very near my home came along too.  Donna was a 14 year survivor and Kasey, 7 years. They both gave me so much hope and inspiration. I found out that the type of cancer we share is less than 3% of all lung cancer types. I’ve never met in person another case like ours. I have talked to some newly diagnosed people with it and I always tell them about these 2 ladies. (No, I don’t use your names).

Last May, I had a chance to attend the Hope Summit in Washington D.C. There were almost 50 lung cancer survivors in one room. It was a very powerful thing. We were from every corner of the country and I don’t think any 2 of us were treated at the same place. There is great care all over this country and this was one happy group. We listened to speakers, shared stories, meals, laughter and even some tears. “That’s a full day.” We have lost a few of these wonderful people since then and we all know that this is the nature of the beast. I know these souls are still with us and the legacy they left will live forever in the hearts of those touched by them.

Sometimes I think getting cancer was the best thing that ever happened to me.  The people I’ve met have inspired me beyond imagination. I’ve met runners, cyclists, swimmers, “gymmers”, hikers, writers, workers, and we’re all  husbands, wives, fathers, mothers, sisters, brothers, advocates and many more all with this commonality. I’ve learned what things in life are important and the things that don’t matter at all. I wonder if these thoughts would be at the front of my brain if I didn’t get cancer. I know I’d still be working, I loved my little business. I wasn’t through, I had projects unfinished and more to do. It was as if the rug got pulled out from under me. I got back up, got in a fight and so far, I’m winning it. I might get knocked down again, I understand that, and I will get back up again.

My wish is that everyone everywhere would pay attention to what their body is telling them. Persistent coughing, pains that won’t go away, anything that seems out of the ordinary, go talk to your doctor. Go to as many as it takes until you are satisfied with the answers. Don’t worry about hurting doctors feelings by going elsewhere for another opinion. Don’t panic if it is a cancer diagnosis. Find out exactly what type it is before reading the entire internet. Ignore the statistics, we are people not numbers. Don’t be afraid to travel to a reputable treatment facility where ever it might be. Make sure you are fully confident in the team you select. A huge weight will be lifted from you with that faith. If you are in an occupation that puts you at a higher risk, demand tests for early detection. Lung cancer is usually advanced by the time of diagnosis. Listen to your body. Get it checked.

At first, I assumed that lung cancer was a death sentence. I quickly learned that it didn’t have to be. I was offered hope and I was inspired by the many survivors I met along the way. Hope, inspiration, faith, a positive outlook, family, friends and oh yeah, never underestimate the power of prayer. You can do it!

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Juhi Kunde

A Stack of Forgotten Papers

December 17th, 2012 - by Juhi Kunde

Usually, my holidays are full of fun. My favorite part of the season is wrapping the presents my husband and I buy together. But this year, I have to do the shopping while my husband is away on business. That means I am faced with the daunting task of managing coupons – by myself.

During the rest of year, I am not that good at keeping track of coupons anyway, but during the holidays there are even more ways to save and it drives me crazy.

Yesterday, I was in line at Target and I managed to use two coupons I clipped from a mailer plus I got 5% off for using my Target Red Card. Of course, I was also hitting the store’s sale racks and I had even used a couple of digital coupons from my phone.

But I still left the store disappointed in myself and wishing my husband had been there to help.

You see, I had forgotten a stack of manufacturer coupons on my kitchen counter.

So there I was, digging through my purse looking for them when the cashier started looking pointedly at the line growing behind me. Eventually, I gave in to the pressure and signed for my purchases.

It is a lot of work to make sure that you have the right pieces of paper, the right technology and the right date, time and location to optimize a shopping expedition.

In fact, when you are trying to optimize anything, it is a lot work to have every single duck lined up. And just one wayward duck can leave you feeling ineffective and exhausted.

Of course, saving 50 cents on frosting is nothing compared to the stress of optimizing a visit to the oncologist. No one wants to be sitting in the doctor’s office when they realize they forgot important paperwork.

Being diagnosed with lung cancer can be overwhelming in itself but then adding the daunting tasks of tracking appointments, organizing medical records and timing medications could make anyone want to hide under the covers.

That is why I am grateful to the wonderful caregivers – our husbands and wives, our friends and children – who help us manage it all.

To all those strong people who keep us organized, focused and moving forward – I offer a heartfelt “thank you!!”

Do you have a special person who helps you keep it all straight? Leave a comment telling us about them or nominate them for LUNGevity’s Lung Cancer Caregiver Contest!

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