Posts Tagged ‘living’

Not My Mom

May 22nd, 2013 - by admin

Janet Hollands was originally diagnosed with lung cancer of two etiologies in August of 2011.  She had a lobectomy, stereotactic radiation and chemotherapy.  At that time her 15 yr old daughter wrote a poem about cancer that was published in her school journal.

This March, Janet was once again diagnosed with two “nodules” in her right lung.  When she told her daughter, now 16, she wrote the poem below.

Janet says her daughter Bailey is her inspiration to beat lung cancer, as many times as she has to.

Both Janet and Bailey have agreed to share this poem with our readers.

 

Cancer

The word struck me with an unknown fear

Cancer

Why did my mom get diagnosed with this?

I don’t ever want to have to give her that one last hug or kiss

Cancer

The doctors said it with such casualty

Like “oh this may just hurt badly”

Looks around the room, what’s this mean?

My sister hugged me and tears came to my eyes

I stayed as strong as I could

Only letting out silent cries

Cancer

How to react?  Nobody knows

It’ll be okay, that’s what everyone hopes

After all what are people supposed to say

about a nice lady, a savior in scrubs

That now has a thousand doctors, and only

gets paid in hugs

Cancer 

She fought it long, and she fought hard

Cancer left, but left her scarred

Everyone was all smiles

She had been on the cancer free road

for miles and miles

Until she wasn’t

Cancer

It came back with no invitation, no warning

Unexpected and unwanted

She sat me on the couch with a look

I hadn’t ever seen

The doctors say its back, you see?

I’m not cancer free anymore, so it seems

She promises she’ll be there through it all

I believe her, she’ll be the one who

does my hair at prom

She’ll be at my graduation, my wedding,

she’ll be at it all

Cancer

Not even that could bring her down

Not my Mom.

Not, Cancer

by Bailey Davis age 16

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Kenneth Lourie

Definition of Slippery Slope

May 22nd, 2013 - by Kenneth Lourie

Figuratively speaking, of course. That definition being: a late stage cancer patient/survivor previously characterized as “terminal” awaiting the results of their most recent diagnostic scan. A scan that will indicate whether the tumors have grown, moved or God forbid, appeared somewhere new. If your life hung in the balance before the scan, waiting for results of this however-many-months-interval-scan will most assuredly loosen your figurative grip on your equilibrium and your most literal grip on your sanity. This is a domain, unlike the one referred to in one of the more infamous Seinfeld episodes, that one cannot master. To invoke and slightly rework Dan Patrick’s “catch” phrase: You can’t stop it, you can only hope to contain it.

Unfortunately, for many of us cancer patients, cancer is the big dog, and if it wants to get off the porch, it will. Our staying put on the porch, however, won’t likely protect those of us inflicted with this most insidious disease. In fact, standing pat – on or off the porch, isn’t likely to have much effect, either. In many cases (make that individuals) cancer is in control. In the medical profession, as much as it has researched and studied, and as many dollars as it has committed in the pursuit of eradicating cancer, the reality is there is much work yet to be done. Though many improvements in diagnosis and treatment have occurred, thereby lengthening life expectancies (I’m living proof of that); still, in many (make that most, let’s be honest) instances, “cancer” is the last word anyone wants to hear associated with whatever symptoms manifested themselves that led to their seeking a medical evaluation in the first place.

I wouldn’t say that a terminal patient’s day-to-day existence is chaotic, but neither would I characterize it as the most predictable set of circumstances. I imagine it’s a bit like living in the wild, where you have to live by your wits and trust your instincts. Moreover, I don’t know of any Living with Cancer for Dummies-type book full of wit and wisdom that exists for the newly diagnosed cancer patient. Being there – diagnosed and treated for cancer previously – and currently, and having already done that (lived/evolved with a terminal prognosis), certainly helps moving forward, but it’s hardly a desirable location and certainly not a cure-all (I wouldn’t mind if it were a cure-this-one, though). However, given the choices, I’d rather have the experience (meaning I’ve survived) than not (the definition of DUH). Avoiding it altogether is the goal. However, as this lifelong non-smoker with no immediate family history of cancer can attest: that is much easier written than realized.

But as you regular readers know, I don’t complain. It’s a miracle/amazing/extremely fortunate/inexplicable almost, that I am still sitting here – upright and fairly productive, four years into a “13-month to two-year prognosis.” I wouldn’t describe my diagnosis-to-date, Kenny-with-cancer life as having been a walk in the park; more like a series of mini challenges, akin to crossing a stream dotted with stepping stones. Still, it is life, and I am living it, and I’m certainly not going to let a few stones – figuratively or literally, get in my way. Cancer be damned.

What keeps you from sliding down the slippery slope emotionally?  Share your tips, comment below.

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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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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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