Posts Tagged ‘lung cancer’

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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Kenneth Lourie

Selfless or Selfish

May 1st, 2013 - by Kenneth Lourie

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

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

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

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

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

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

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

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

 

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

 

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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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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?

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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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Posted in Lung Cancer Survivors | 3 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?

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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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