Archive for January, 2012

Katie Brown

Friends Are Caregivers Too

January 30th, 2012 - by Katie Brown

In 2009 after having had cold-like symptoms and being out of breath, Julie Guarducci decided to see her doctor.  An avid runner, she knew something was wrong.  Finally in 2010 she was given a CT scan and an eventual diagnosis of stage IIIa non-small cell squamous cell carcinoma.  After an unsuccessful thorocotomy, she began chemotherapy and radiation.

Julie was still receiving radiation when she started running again. She’s sure her radiation oncologist wouldn’t have approved but for many runners the motto “listen to your body” is one to live by and Julie thought her body knew best. Her body said “run” so she ran! She couldn’t get to one mile for about 2 weeks but gradually she increased her distance and in May 2011 she ran her first 1/2 marathon. She wanted to finish in 3 hours and she did it in 3:06 to be exact!

Two years later, Julie is still cancer free.  One of the many things she is grateful to in contributing to her survivor ship is her friendship with Rene Rodriguez.

Recently LUNGevity held a caregiver contest where people from across the nation nominated their caregivers.  Lung cancer caregivers willingly and selflessly devote their time to care for their loved ones battling lung cancer, while often neglecting themselves in the process.

While we were only able to award one prize, we wanted to take the time to honor all the lung cancer caregivers who were brought to our attention and with Julie’s permission we are re-posting her nomination of Rene.

When I moved to TX I had no family or friends, it was just me.  I became friendly and eventually friends with a co-worker, Rene R.  That was 9 years ago. Today he’s my best friend.  This is what best friends do for you when you’re sick.  Rene was with me every step of the way from diagnosis, through surgery and treatment and finally when I was told ‘there is no evidence of cancer at this time’.

He didn’t let anything get in the way of being there for me, not even sleep.  You see, Rene works night shift, 6am-6pm so he would get out of work, drive 30 minutes and pick me up, drive another 30-40 minutes to the hospital then sit around (he didn’t sleep because he snored too loud) for several hours while I received my round of chemo for the day and received my radiation treatment.  He did this for 2 rounds, 6 days each, and then continued to drive me back and forth to the hospital for the remainder of my radiation treatments.

Now I know family will do whatever is needed to help care for sick family members but for a friend to do what Rene did … there are no words and thank you doesn’t seem to be enough.

From me and my family, THANK YOU Rene! Without you to help I don’t know what I would have done.

Julie’s BF and incredible caregiver, Rene R.

We think Rene is an incredible lung cancer caregiver too!

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Dr. Jack West

Concern about Long-Term Recurrences after SBRT: More than We Might Expect?

January 27th, 2012 - by Dr. Jack West

  A new report was just published by a Japanese lung cancer group (in Kyoto) that describes their new observation that a higher than expected proportion of their patients who underwent stereotactic body radiation therapy (SBRT) for an early (node-negative) lung cancer developed late recurrences, even well beyond five years (For those unfamiliar the focused radiation approach known as SBRT, is is a very good summary of the topic). Some Japanese centers have been among the real pioneers in SBRT, doing it for more than a decade, often on patients who had medical issues that made it difficult to have them undergo surgery.  These early encouraging results have led to SBRT now being practiced around the world, based on favorable local control and outcomes going out at least a few years from the procedure.  One current question is whether SBRT might ultimately be sufficiently effective to be a good alternative to surgery even for people who are very good surgery candidates.

   The authors of this report, a group of radiation oncologists, noted that we may see late recurrences beyond the time when we’d be inclined to declare an early victory for SBRT. In general,if a patient is doing well for 3 to 5 years after diagnosis and the start of treatment, we become pretty optimistic that they are unlikely to have a recurrence later.  They reviewed the long-term outcomes among 66 patients who underwent SBRT for node negative NSCLC from 1999 and 2005.  The median follow-up was only three years, so in light of the fact that these treatments were done 6-12 years ago, this median presumable indicates that many people were lost to follow-up or died in the first few years. 

(more…)

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Raising Awareness

January 23rd, 2012 - by admin

by Heather Geraghty

Awareness is the single most important aspect of a cause and without it, the cause simply could not exist.

Lung cancer impacts more people every year than any other cancer, yet it is a cancer with the least amount of awareness. In fact, when most people think about lung cancer it is usually masked by smoke. This narrow perception of the disease makes awareness that much more imperative to advocates and survivors alike.

Although nobody deserves cancer, lung cancer remains the most stigmatized. Whether you smoke or not should not matter. Big tobacco companies invest billions of dollars every year to ensure the most addictive products, and I think those who fall victim are hardly the ones to blame. Can you think of a time where you felt victim to a scam, exploitation, or addiction? Smoking is not a reason to be blamed, punished, banned or victimized by society.  And for those who smoked, they don’t deserve a “life sentence”.

I believe that lung cancer needs more awareness through educators. There are not enough people talking about the disease, advocating for patients, and encouraging a change in society’s overall view of lung cancer. It is crucial to know the facts, not just for your health but for those around you. Lung health should be universal, and prevention education should not be categorized by whether someone smokes or not.

I feel like LUNGevity Foundation is one of the only non-judgmental organizations fighting against this disease. Katie Brown, Director of Support and Advocacy, said it best when she described the Foundation as “cause agnostic”.

My name is Heather Geraghty, and I am a former cigarette smoker. I was diagnosed with lung cancer at 24 years old, and I celebrated one year lung cancer free on January 20, 2012.

I encourage you to learn the facts about lung cancer, and I challenge you to spread awareness.

“Hope is both the earliest and the most indispensable virtue inherent in the state of being alive. If life is to be sustained hope must remain, even where confidence is wounded, trust impaired.” –Erik Erikson

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Katie Brown

Caregiver Contest Winner

January 18th, 2012 - by Katie Brown

Washington, D.C. (January 18, 2012) — LUNGevity Foundation is pleased to announce Cyndi Siegfried of  Germantown, Tenn. as the winner of its Annual Caregiver Contest, recognizing a special individual who has provided exceptional care to a lung cancer patient. Cyndi was nominated for the award by her husband Jim, a 9-year lung cancer survivor who is currently cancer-free.

Over the course of their lives, one in 14 Americans is affected by lung cancer. Lung cancer caregivers are mothers, fathers, sons, daughters, neighbors and family friends of all ages.  In most cases, they have no medical background, yet they play a crucial role in helping lung cancer survivors manage their disease, often coordinating medical care and providing emotional and physical support, in addition to tending to household and professional needs. LUNGevity Foundation recognizes the vital role these caregivers play in the fight against the nation’s number one cancer killer and honors their commitment and love with its Annual Caregiver Contest.

During the month of November, Lung Cancer Awareness Month, LUNGevity asked the public to submit nominations for an incredible caregiver. Many dedicated men and women were nominated, including husbands, wives, daughters, sons-in-laws, sisters, mothers, fathers, and friends. Cyndi Siegfried was ultimately chosen by an independent panel of judges, based on specific criteria of caregiving:

  • Being an advocate for their loved one’s medical needs
  • Being supportive and helpful with their loved one’s emotional needs
  • Successfully creating a support network around their patient

Cyndi has been the primary caregiver for Jim, who was diagnosed with lung cancer in 2002.  In his nomination, Jim noted that “in 2002, Cyndi was computer illiterate. We bought a computer and she dove in, teaching herself, in order to research my particular type of cancer, get information about trials, traditional and complementary treatments, and to find the best doctors and cancer hospitals. She has been my encourager, helping me to keep my focus on what is really important. She has been at the forefront from day one, making sure I get the best of what I need to fight this disease. But she doesn’t see herself as a ‘caregiver’ but rather as a person who loves someone with cancer.”

Recognizing the special needs of caregivers, Cyndi and Jim also founded a local in-person support group for patients and caregivers, and Cyndi recently wrote a book to help other caregivers, A Caregiver’s View from the Passenger Seat.

The winner of LUNGevity’s caregiver contest wins travel and a one-week stay for two at Cricket House in historic Gettysburg, Penn. Cricket House is owned by Debi Gemmell, who was also a caregiver for her husband, Chris. “LUNGevity recognizes the difficulty and hardships that lung cancer caregivers sometimes face and are thrilled to be able to partner with Debi to offer this prize to one incredible caregiver. We wish we could give every one of these hard-working and deserving caregivers and their loved ones a prize,” stated Katie Brown, Director of Support and Advocacy for LUNGevity Foundation.

LUNGevity Foundation has the largest grants award program for lung cancer research among lung cancer nonprofit organizations in the United States. As a thought leader and community hub, LUNGevity provides many resources to the lung cancer community, including the Lung Cancer Support Community, the largest dedicated social network providing support to anyone touched by lung cancer. As part of the online resources it offers, the Foundation recently unveiled the Caregiver Resource Center, at www.lungevity.org/caregiver, which offers emotional support, practical advice and patient advocacy advice, and other services for caregivers. It is the first online resource wholly devoted to lung cancer caregivers.

About LUNGevity Foundation

The mission of LUNGevity Foundation is to have a meaningful and immediate impact on improving lung cancer survival rates, ensure a higher quality of life for lung cancer patients, and provide a community for those impacted by lung cancer.

In order to accomplish our mission, LUNGevity funds the most promising research into the early detection and successful treatment of lung cancer. LUNGevity also supports the largest national grassroots lung cancer network, as well as the largest online support community for those affected by lung cancer.

The organization was recently awarded the coveted four-star charity ranking by Charity Navigator, American’s premier charity evaluator based on LUNGevity’s sound fiscal management and commitment to accountability and transparency.

LUNGevity seeks to inspire the nation to commit to ending lung cancer.

For more information, please visit www.lungevity.org.

About Cricket House

Cricket House is an award-winning historical property located in the heart of Downtown Gettysburg, PA, and consisting of two charming historic buildings, the Cricket Guest House and the Main House, which has recently opened the Cricket House Spa. For more information, please visit www.crickethousegettysburg.com.

Cyndi and Jim Siegfried

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Too young to be a sandwich

January 12th, 2012 - by Valerie Roseberry

I was 23 years old and expecting my first baby girl when I got the news that turned my world on its head.  Here I’d called just to chat with my folks about the little drama of my own day.  My Dad was quiet though.  Too quiet.  I knew something was wrong.  When he told me he didn’t want to tell me the news until my husband could be home with me, I knew it was the worst kind of bad, and when he told me my mom had lung cancer, in a blink the whole world was different.

My folks had been planning on flying back to be with us for the first month of our new baby’s life. Suddenly though what took priority was the fight for my mother’s life.  They couldn’t make the trip to Washington when our baby girl made her grand entrance.  Instead, I called Mom in an infusion room in Illinois from the Naval hospital in Washington to let her know that her first grand-daughter had been born and that she was named after her.

Two months later, as my husband left for his first round of work-ups and an eventual deployment, my newborn and I flew back to Illinois to spend time with my Mom.  By that time we knew she had Stage IV Lung Cancer that was considered terminal.  My caregiving role changed dramatically when I could finally be there to help with the demands of doctors’ appointments and med schedules and trying to get ahead of the pain, but I can say it was one of the greatest privileges of my life to be there to care for the woman who had given me life and so lovingly cared for me.

I remember feeling so very alone.  None of the rest of my friends who were my age had dealt with anything like this.  With one foot I was standing in the beginning of my own adulthood and journey of being a mother.  I had been married a short time and was learning, with my husband, the ropes of being a Navy family.  I’d just had my very first little girl, and I was a fledgling nervous first-time Mom.  With the other foot I was standing at the end of my mother’s life, watching her fight as hard as she could, battling pain that just wouldn’t be controlled, and having matter of fact conversations about what should happen after she died.

I thought many, many times.  “I’m too young for this.”  I remember reading some articles about “the sandwich generation” at the time and thinking that I was just plain too young to be a sandwich of any kind.  That was supposed to be for people who had kids nearing college and who were themselves approaching retirement.  I had only just begun to establish an adult relationship with my mother—to get to know her for who she was as a person and not just in the ego-centric way a kid knows their Mom.   I had assumed I would be rolling my eyes at her antiquated parenting advice for years to come.  I thought there would be more time to learn about the interior life of the woman who was becoming my best friend and not just my mother. Making choices about her care, sitting with her and holding her hand on nights that the pain got bad:  that was supposed to come years down the line.

I had always just assumed that my mom, just as my grandmother had done, would grow old slowly…  I had envisioned discussions sitting over her kitchen table with her hair silvery and my gaggle of kids playing not far away.    I had imagined the end of her life coming much, much later and my role as a primary caregiver to come after I’d accrued a whole lot more wisdom.

Maybe the truth of the matter is, no matter when it happens, when faced with the enormity of losing someone we love so much, we all feel too young.  We all ARE too young.  There’s never a good time to face those fears and questions.  There’s never a time when you are old enough or ready to lose a person who has been your anchor point.

Lung cancer took my Mom just 8 months after her initial diagnosis.  My baby was 4 months old.  Thanks to LUNGevity and the research going on it is my hope that fewer and fewer daughters and sons who are given the heart-breaking privilege of walking with their parent through a lung cancer battle will have to realize their fears of not having that parent to walk them further into adulthood.

If you feel “too young for this” no matter what stage in the care-giving journey you’re in, you’re not alone.  Others have walked this path.  It’s a hard path, well-watered with tears, but you can be sure you have company on the journey.  Reach out.  Join the LUNGevity support forums, find a phone buddy, share your story.  You may not have the benefit of the number of years you thought you would have before facing the questions before you.

All the same, you might just find that you aren’t alone on the journey, and sometimes having someone with you on the path can make it a little easier to walk.

*Family photo credit: photographer Danielle Kindelberger

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