Posts Tagged ‘doctors’

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 | 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.

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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 »

Communicating About Your Cancer

April 4th, 2013 - by admin

by Anne Gallagher

 

Do you share everything about your cancer diagnosis with your family and friends?  And if you do, do you do it right away?

I have been accused of withholding information in the past from my loved ones about my lung cancer. When it comes to communicating with family and friends about my cancer diagnosis, I feel strongly that it’s up to me how and when the information is disseminated.

Some people need time to process.  I am the type of person who needs to mull over information and digest it before I can reasonably talk about it with another person.  For years I did keep information somewhat hidden and only gave out small amounts of information because I thought I was protecting them.  What I have come to realize is that I was protecting myself.

It was very difficult for me to watch my family and friends experience the information that I was giving to them so instead I limited that information.  The more emotional I knew the person would be, the harder it was for me to share openly with them.

Communicating with family members and friends can be a tricky situation.   Not only is the patient dealing with the information about themselves, but they are dealing with the emotions of their support system.

As a Patient Navigator I will frequently see patients choose wisely who they bring with them to a consultation.  They may not bring the child who is the most emotionally fragile, or the person who may be a distraction rather than a support.  While it is important to have that second set of ears in the room, make sure that it is someone who can write down good information without being too distracted by the news.

I encourage patients to have at least one person in their life that they can be really honest with.  I don’t care if it is a spouse, long-time friend, or even a therapist; patients need one person that they can say how much this really stinks to.  I know that family members and friends  just want to be helpful but letting the patient guide the communication is an important piece to being helpful.

Patients also need a gatekeeper for information and the information that is being shared.  It might be a person designated this responsibility or  one of many websites that are designed to communicate information for patients.  I especially like Caringbridge.org or Mylifeline.org.  Both of these websites allow you to journal what is going on and then your family and friends sign up to receive a notification when something new is written.  This allows a great number of people to get information without the patient getting many phone calls and stops patients from having to tell the same story over and over.  Not only is this a private way of communicating but friends and family can leave messages to the patient and those little notes can be very uplifting during difficult times.  Many patients use Facebook to communicate and creating a closed group is another option.

Most patients receive offers of help, especially early on in a diagnosis.  As a new patient it is hard to know what to ask for and it is also hard to swallow that little bit of pride and independence and ask for help.  I find that people really do want to help but they need very specific requests. It is our responsibility as patients to say exactly what we need.  Sometimes that means a specific task like a meal for a night, childcare, or a ride to treatment.  Sometimes it means saying that I just need someone to listen to me or even give me some space.  There are great sites like lotsahelpinghands.com or mealtrain.com  in which patients can list specific needs and friends and family can sign up for duties or to bring meals.  These duties can even be coordinated by another person so the patient can focus on their treatment.

Communicating throughout a cancer experience can be difficult but there are tools that can help.  Always keep in mind that all parties involved are hearing the information with their own set of circumstances and with their own emotional abilities.  Sometimes family or friends do not behave or communicate how we expect them to in this situation.  Honesty and forgiveness go a long way in this area.

Communication is the key to getting through this process.  So keep those lines of communication open as much as possible.

If you need help communicating with your caregivers and family members, visit LUNGevity’s Caregiver Resource Center for resources and suggestions.  Post your ideas, tips and suggestions below.

**You can see Anne at the 2013 LUNGevity HOPE Summit in Washington DC where she will be speaking on a panel about Surviving with Cancer.

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Kenneth Lourie

My Team

March 26th, 2013 - by Kenneth Lourie

Not literally, of course. Nor am I the coach or the general manager. But I do feel like an owner, in that there are people that I invest in – again not literally, but definitely emotionally.

The people who express the kind of positivity and confidence and encouragement – and empathy and understanding quite honestly, of the demands and rigors physically, emotionally and spiritually of being a terminal cancer patient. Aside from my immediate family and inner circle of friends, co-workers, and fellow cancer patients with whom I’ve connected, I refer to all the people who have sent cards, letters, e-mails and general well-wishes offering their hope, prayers and confidence in yours truly surviving this ordeal.

Moreover, there are people I’ve met along the way: health care providers, therapists, newly diagnosed cancer patients, previously diagnosed cancer patients, individuals who don’t know me/don’t know my story; whose personality, perspective, enthusiasm and sincerity have empowered me, and who have exuded the kind of positive and uplifting spirit that fuels the passion that a stage IV lung cancer patient tends to lose as the fight for one’s own survival continues. To invoke a sports cliché: these are people who are good in the locker room/clubhouse.

These individuals are selfless, dedicated, motivated, caring, concerned, successful, can-do-type positive influences who optimize their optimism and bury their pessimism, especially around a terminal cancer patient. The last thing, the absolute last vibe that a terminal patient needs is negativity, depression, anxiety, worry and stress; internally and equally importantly: externally. I don’t need to feel or be influenced by or be in the presence of anybody – or anything, that intentionally or unintentionally (by their nature) brings me down or opens me up to self doubt, or doubt of any kind for that matter. I need to believe. And most importantly, I/we need to be infused with positivity. And I don’t mean Stepford Wives-type behavior (robotic, following a script, lacking in substance) either. I mean, the human touch, emotionally certainly and occasionally even physically. In summary, we need a connection, a feeling of togetherness and mutual awareness of the patient’s plight and a willingness to face it and dare I say, discuss it together in an intelligent, thoughtful and exuberant-type manner where the highs – in life and in any treatment protocol, are maximized and where the lows are minimized.

The up-and-down-and-all-around existence of a cancer patient who’s terminal is already as much negativity (which becomes almost endemic) as one can endure. Therefore, any more negativity from any source in any way/context might just push that patient over his or her emotional edge. An edge which might involve a metaphorical set of finger nails.

Who knows really, what the patient’s limitations are? We only know who, what, where and when circumstances exacerbate an already precarious position, a position certainly worth avoiding.

My team consists of individuals with attitudes that reflect this reality. It may not be for everybody. But it better be for the cancer patient. “I don’t know much, but I know that.” (Ben Affleck – out of context, from the movie “Good Will Hunting.”)

Who’s on your team in this fight against lung cancer?

_______________________________________________

“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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