Welcome to LUNGevity's Blogosphere!

In this space, you'll find the voices of LUNGevity's constituents: lung cancer patients and their loved ones, caregivers, scientists, event coordinators and participants, and anyone else who's interested in our progress in reducing lung cancer's mortality rates.

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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Kenneth Lourie

Instincts

March 8th, 2013 - by Kenneth Lourie

…related to having been diagnosed with stage IV, non-small cell lung cancer, the terminal/“incurable, but treatable” kind, according to my oncologist. The kind whose median life expectancy at diagnosis is eight months. The kind that John Rhys Davis as Sallah from the 1981 movie “Raiders of the Lost Ark” might have described as “very bad,” just as he had described the asps slithering below on the floor of the tomb he and “Indy” had just unearthed. So the news I received in late February, 2009 – such as it was, was never very good. In fact, for an asymptomatic, non-smoking, 54-and-half-year-old male with an immediate-family history of NO cancer, it was, well, “shocking” barely scratches the emotional surface of what I was feeling.

Forty-five months later, I am still dealing with feelings – as in still living, for which I am amazingly fortunate. However, those feelings seem to sometimes have a mind of their own, and accordingly tend to take over and rewire one’s brain (figuratively speaking). Moreover, thoughts, actions and behaviors change, and not always for the better, and rarely for the best; most likely a direct result of the cancer’s emotional wallop. Thoughts you don’t want/ never had seep in despite your best attempts at minding them. Behaviors previously uncharacteristic manage to exert more control than you ever imagined. Actions previously unfamiliar cause one to wonder if who you were – pre-cancer, you will ever be again. You don’t want to lose yourself inside the whole cancer culture, but being told you’re going to die prematurely: in “13 months to two years,” has a way of rewriting your record books, whether you intended to or not. Not giving in to this cancer consequence has been my greatest struggle.

Early on, I remember asking my oncologist: “Is it OK to still buy in bulk?” For all you know, based on much of what your doctor is saying, and what you are sensing, your future is tenuous and extremely unpredictable (a version of the humorous advisory to “not buy green bananas”). I mean, the diagnosis is terminal cancer; “HELLO.” What are you supposed to think? This is how your mind takes over and you sort of lose it/lose control of it. As former Vice President “Dan” Quayle said in a speech to the United Negro College Fund (not about cancer), “What a terrible thing it is to lose one’s mind.” Still, it certainly applies.

Another brain drain has to do with specific events scheduled in the future, a future whose guarantee – for me, has been invalidated. I’m watching television during the summer of 2012 and I see ads for Downton Abbey’s third season premiere in January, 2013, and instinctively I wonder, will I be alive to see it?

Road projects are another example. At the beginning of the construction of the Intercounty Connector in Maryland (a cross-county highway being built near my house), regularly I would be stuck in the project’s related road closures/redesigns and bridge-type flyovers and I would always think to myself: “Am I going to be alive when this project is finished or am I just going to suffer its building pains?”

Next May, the LUNGevity Foundation, the largest foundation in the country dedicated to lung cancer research (and on whose Web site my cancer columns are now being posted) will be hosting their annual “Hope Summit” in Washington, D.C. I have been invited to attend and/or speak. My first thought upon receiving the invite: “Am I going to still be alive in May?”

I want to be positive. I am positive. But cancer is a huge negative. It’s a constant battle of good versus evil. Sort of like the Indiana Jones movies. But this isn’t the movies.

This is real. This is cancer, the true definition of “very bad.”

How do you stay/get positive while living with cancer?  Comment below.

 

____________________________________________________________

“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 | 2 Comments »

Thankful for Early Detection

March 1st, 2013 - by Jan Gibson

Jan GibsonOn March 24, 2005, at 46 years old, I was diagnosed with Non-Small Cell Adenocarcinoma Lung Cancer. There were no symptoms. Because of chest pain on my right side, I went to the emergency room on Sunday, February 20th. I was concerned about my heart. Heart disease runs in my family, and although I am very physically active, my sister had a heart attack when she was 47. I never found out what was causing my chest pains that day, but I did find out that I had a mass on my left lung. How could I have lung cancer? I don’t smoke. I never knew people could get lung cancer if they didn’t smoke.

My cousin and friend Kathi, age 46, had passed away just 2 years earlier from Small Cell Lung Cancer. This couldn’t be happening to me. How was I going to tell my children? They had just seen this same disease kill my cousin. How could I explain that mine was different? This was the beginning of a new life for me. After many tests over the next month, which included Chest X-Rays, CT scans, PET scans, Needle Guided Lung Biopsy, and a Bronchoscopy/Mediastinoscopy, it was determined that the cancer seemed to be contained within the one lung and had not spread to any lymph nodes.

On April 20, 2005 a lobectomy was performed at University of Maryland Medical Center. I had the upper lobe of my left lung removed. This was the most emotional day of my life. I wrote both of my daughter’s goodbye letters, just in case. I had a wonderful surgeon who was able to perform the lobectomy using a procedure called VATS (Video assisted thoracic surgery). The recovery was much easier because of this newer procedure. I was back at the gym in 2 weeks, walking on the treadmill and using the elliptical machines. Four weeks later, with CT scan in hand, I went back to the surgeon and he said that everything looked good. They did not recommend chemotherapy at this time. I was staged at a 1A, and was told that the benefit of chemo was not worth the risk for my stage of cancer.

I am so thankful that I caught it early, and they were able to do the VATS surgery to get it out of there. The doctor says that I am cancer free now. We never did find out why I was having chest pains on my right side that day, it had absolutely nothing to do with the cancer. The pains went away the next day, and they have never been back again.

Now, I’ve never been a religious person, but I have to say, someone was trying to tell me something. Had I not gone to the ER that day, who knows when my lung cancer would have been detected?

There needs to be more funding into the early detection of lung cancer so that more people can survive this disease.

I just feel so very fortunate that my cancer was accidentally detected early and I was able to be “cured”. I want everyone else to have the chance at early detection. It’s time to treat lung cancer with the same urgency that all other major cancers receive. I have learned so much since being diagnosed with lung cancer. I learned that lung cancer is a horrible disease that is underfunded and has a stigma attached. I learned just how much my husband, my mother, my sister and my children really love me. They were my rocks.

I can’t even begin to describe what it has meant to have my LUNGevity “LCSC friends” to talk to. They are the only ones that truly understand. I joined the LUNGevity Lung Cancer Support Community message boards 6 days before my lobectomy in 2005!

I’ve been cancer free for 8 years now.  I volunteer in my community. I’ve participated in cancer events and I am a volunteer LUNGevity LifeLine Support Mentor to those who are newly diagnosed.

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Posted in General, Spotlight | 1 Comment »

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