Posts Tagged ‘funding’

Katie Brown

How to Help Someone with Lung Cancer

June 11th, 2013 - by Katie Brown

I’ve been thinking a lot about Lori Hope lately.  In case you didn’t have the pleasure of knowing her IRL or online, here is a link that will give you a little more information about who Lori was.

Lori was a lung cancer survivor who defied odds and outlived her prognosis.  She was such an inspiration and source of hope to so many people in the cancer community.  She was a rare soul.  She was a cancer survivor who thought about others.  I’ve known my share of cancer survivors who thought only of themselves.  She often thought of those newly diagnosed and about their families.  She wanted to leave this world a better place than when she was diagnosed and I admired her so much for how huge her heart was.  Lori died September 2012 and is very missed by so many.

Lori’s book.  Help Me Live: 20 Things People With Cancer Want You To Know has been a reference for so many of us who support patients and families.  A copy of that book sits on a shelf above my desk. I see it every day when I walk into my office.

Today it’s inspired me to write my own list; a list specific to lung cancer.

HOW TO HELP SOMEONE WITH LUNG CANCER

Life’s financial burdens, family, children, employers and household chores don’t disappear when a lung cancer diagnosis happens.  Navigating the medical process and surviving treatments and side effects are added to the mountain of responsibilities a person typically has.

These are just 5 simple ways that you can help someone you care about who’s been diagnosed with lung cancer.

 1.    Don’t ask if they smoked. 

Instead, show them that you care.  Empathy and sympathy comes easier to those who’ve been diagnosed with other types of cancers.  With lung cancer there are misconceptions about the disease and who can get it.  Some people may believe that lung cancer is solely a preventable disease and don’t know that all you need to get lung cancer are lungs.  There may be blame or even guilt associated with a lung cancer diagnosis.  While lifestyle can play a part with any health issue, it isn’t your place to assess the cause of their lung cancer or place any blame upon them.  When you learn of someone’s lung cancer diagnosis you need to decide whether or not you’re going to be a part of their supporting team.

In one interview, Lori Hope mentioned how “OK” it was to say that a person’s diagnosis was “unfair”.  Saying a diagnosis is unfair lets the patients know that you care; you understand that it could happen to anyone and that there is no blame placed upon the patient for their diagnosis.

2.    Listen. 

Listen to the patient.  Some patients are blessed with family members and friends who will become caregivers and can support them throughout their lung cancer experience.  Everyone wants to help and sometimes the wishes of the patient and even how they are feeling emotionally about their health and future can get lost in the day to day responsibilities.  Don’t forget to include the patient in every aspect of decision making unless they defer all responsibility of that task to a specific person.  Don’t forget to ask how the patient is doing and listen to the patient talk about how they are feeling about their situation.  It’s ok not to know what to say or not have any answers.  Just listen.

Listen for the patient.  Doctors’ appointments, treatments, procedures and life changes are overwhelming.  It can be difficult emotionally to process all the things coming at you.  Ask the patient to designate a healthcare advocate or “listener”.  This person will go to doctor’s appointments, writes down questions and answers and records side effects and anything else the patient is experiencing and act as a liaison between the patient and their doctors.

3.    Share hopeful stories and experiences. 

Don’t talk about how you lost someone to cancer to someone who’s just been diagnosed with it.  The idea is to inspire and offer encouragement, not instill fear or dread or even false hope. If you don’t have any real positive stories of people surviving cancer, find some survivor stories to share and talk about everything else.  Your conversations needn’t revolve around cancer all of the time.

4.    Don’t ask.  DO.

“Let me know if I can help.”  You’ve probably said these words many times in your lifetime in many different circumstances.  Did you mean it then?  Do you mean it now?  There are so many things people can do to help, but the patient and their family will rarely ask for help.  And saying those words simply puts the onus back onto the patient and off your shoulders.

Actions speak louder than words.  Set up a meal train or a chore chart among family and friends.  Schedule a specific task and do it.  Then do it again or do something else but keep helping as often as you can.  A person diagnosed with lung cancer can use all the support and help you have to offer for the duration of their treatments and recovery.  You’d want people to do the same for you.

5.    Seek outside support.

If you don’t have time to spare to take on responsibilities and physically help the patient, there are still ways you can help.  You can research to find outside resources to help support the patient and their family.  You can find volunteer organizations who offer rides to treatments, you can contact churches and groups to mow lawns and do light housekeeping and deliver meals.  You can even find cancer support groups and mentors/support buddies for the patient.  Ask them what their needs are and work to help fulfill them.  You can find a listing of resources on the LUNGevity Caregiver Resource Center.

 

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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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Posted in Lung Cancer Survivors, Testimonial | 1 Comment »

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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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.

 

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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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