Archive for August, 2011

A Moment in My Life -After Chemo

August 23rd, 2011 - by admin

by Robbie Joiner- Walton

Last night I went to my local Lung Cancer Support Group.  I’m pretty new to the group.  And I had not attended a meeting since March mostly due to the extreme heat here in Texas. It takes a lot out of me.

So last night I ventured out and I had the opportunity to meet a new member of the group currently going though chemo. He hasn’t had much success or any positive changes in his cancer status since beginning chemo. He was given the option of another line of chemo. From the tired look on his face, and after what he had already gone through, you could almost read what he was thinking - Do I even have the strength to do it again?

The disappointment that he was experiencing really touched me in a way that I never thought could. I found myself feeling lucky, blessed, and grateful for where I am today in my recovery, because I could have easily been in his shoes.

And at the same time I felt anger and deep sadness for him and for people who are just starting their journey with this horrible soul changing disease.  You see how it can devastate the lives of the host and their families. You will never be the same after you have lung cancer!  Life is different! You look at life differently and you can have physical limitations.

But I believe you have to keep on fighting with every thing that you have….Because there is hope.  My story is a story of hope.

I don’t know if anger or my ego battles for me but it doesn’t matter- just so you give it every thing you have.

You would think, I would be a pro at this by having had lung cancer two times.  But I am not!  The word “cancer” still cuts like a knife and my heart still bleeds pain while my brain goes into panic mode whether it’s me or someone else going though it.

I felt the tears well up on the drive home and I prayed for this person for what he is going through.

Just a moment in my life after chemo.

Robbie is a two-time lung cancer survivor.  She was originally diagnosed at age 18, and then again last year.  After having chemotherapy, radiation and surgery she is cancer free.

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My Kids and I Are Going to Fight

August 19th, 2011 - by Liz McCabe

When we began the Cary Walk for Hope (aka Breathe Deep Cary) in 2007, I told my son THIS is what we are going to do about Lung Cancer. We are going to fight! We will be a voice for people affected by lung cancer. We are going to let people know about all the special people who have lost their fight and no longer have a voice, but we do. And we are going to give others HOPE.

My kids have been involved with LUNGevity from the beginning with me; helping me at events, putting up posters and raising awareness.

When I asked my 10 year old, “Tell me the first thing that pops in your head when I say the words ’Lung Cancer’?” He replies in less than two seconds… “Death.”

For a 10 year old that breaks my heart. Connor is my first born child and was five months old when my father lost his battle with stage 4 lung cancer. My second child Daniel (named after my dad) was born 2 years later, while my mother was fighting her battle with stage 4 lung cancer that had metastasized to her brain. I found out I was pregnant with my third child four weeks before my mother lost her battle.

Connor remembers the visits to the hospital for my Mom, the late nights we stayed with her till my brother or sister relieved us to take over the next shift of care, the days we sat by her bedside before she took her last breath. I remember when we finally told him she had passed away… he cried and cried but looked up and said “what are we going to do about this?” That is a big statement for a 4.5 year old.

Two years later my children are 6, 4, and 2 and are faced with one of their favorite aunts passing away from guess what… complications from lung cancer and heart problems.

I think they really got the message when they met a very special person who was part of our 2nd year walk: Justin Andrews of the team “Justin’s Fight Club.” Connor was amazed by his story and for the next few weeks talked about him non-stop, the whys, the what-ifs.

Last year Justin was the face of the TRU TV campaign. These where short commercials that told Justin and his family’s story about lung cancer. And about smoking. You saw him in the hospital, in his house, with his beautiful wife and little boy.  My kids would stop whatever they were doing when those commercials came on. They were still, they listened, they knew all too well the faces of lung cancer. It did not have to be someone who is 50-60 years old. They got the message loud and clear.

At the Cary Walk for Hope last year we gave out medals to the winners in top finishing spots of our 5k. I had one medal left over. Connor said “Mommy don’t you think we should give that metal to Justin, he’s been through so much.”  Children have this gift of unconditional love and gratitude that I find amazing. Connor walked over and gave Justin the medal and then shook his hand.  A truly amazing parent moment.

For Thanksgiving of last year we went to spend it with my husband’s family in Massachusetts. When I got the email from Justin’s sister of his passing my heart broke for another family that was forever going to be affected by this disease.  As I tried to hide my sadness from everyone that day, especially Connor, I could not hold it in any longer and pulled Connor aside and told him. The hope Connor always had in his eyes when Justin was getting better or in remission and the hope he had in his heart that what I was working for with the events that I put on for LUNGevity to help raise money for a cure were gone. Like many we felt defeated. Like I could not catch my breath.

Life goes on and these moments that take our breath away make us in to the people we are.

I still have HOPE; I still pray every day that we will one day find a cure. I hope that one day when I ask Connor again, “What are the first words that come to your mind when I say lung cancer?”  I hope his reply is HOPE or better yet CURE.

This year LUNGevity launched an initiative to spotlight incredible lung cancer survivor stories and hosted the inaugural HOPE Summit, bringing together lung cancer survivors from the ages of 25-65.  Some were in treatment and others were months and years into their survivorship.  They are the faces of lung cancer and show the nation that anyone can get lung cancer and that there is HOPE.  People DO survive this disease and we need funding for more treatments that lead to a cure.

If you are interested in becoming an advocate like Liz McCabe, please visit our website www.lungevity.org to learn more about LUNGevity.  Please join LUNGevity’s Link Up advocacy program and learn the many ways you can help in the fight against lung cancer and help to create HOPE.

You can join Liz and Cary residents for the Breath Deep 5k Cary NC, Saturday October 8, 2011 at the Wake Med Soccer Park.

For more information please email Liz McCabe at cary@lungevity.org or visit the website: www.lungevity.org/cary

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Juhi Kunde

Q&A with Vince Gilligan, Creator of Breaking Bad

August 17th, 2011 - by Juhi Kunde

Vince shares his thoughts on his choice to give the main character lung cancer, his own connection to lung cancer and his efforts to keep the portrayal of lung cancer as accurate as possible. I was glad to learn that he too understands the importance of cutting-edge research in putting an end to lung cancer mortality.

For those who haven’t seen this television series, Walt White, the hero, is a chemistry teacher who is diagnosed with terminal lung cancer. In an effort to provide for his pregnant wife and disabled son, he starts cooking and selling crystal meth with Jesse Pinkman, a former student and small-time drug dealer. And now, let’s hear from Vince…

JK: Why did you choose to give Walt lung cancer?

VG: “Lung cancer is a disease pretty much everyone is familiar with, versus some illness that’s rare and exotic. Walter White is an everyman (or at least he starts off as one), and I thought that he should suffer from something our viewers could relate to and sympathize with. Unfortunately, many of us have had a friend or loved one diagnosed with lung cancer, or perhaps we’ve even been diagnosed with it ourselves. I think that fact allows folks to more readily understand and empathize with Walt’s plight… though not with his decision to cook crystal meth!”

JK: Do you have a personal connection to lung cancer?

VG: “Several of my relatives succumbed to lung cancer.  Most recently, my Aunt Ginny died of it in 2007. She was married to my favorite uncle, my Uncle Gary, who still has her outgoing message on their home answering machine. Every time I call his number I hear her voice, and it makes me sad. Everyone in our family misses Ginny very much.”

“On Breaking Bad, Jesse Pinkman occasionally refers to his deceased aunt, whose house he inherited.  It’s clear she meant a lot to him. I named her Ginny in honor of my own aunt.”

JK: Now that the show is in its fourth season, have you learned more about lung cancer?

VG: “I am still very much a layman in terms of my knowledge of lung cancer, and of cancer in general. However, I do know more about it now than when I started on Breaking Bad. My writers and I have had long, informative discussions with several very gifted and experienced oncologists who were gracious in sharing their time and expertise. In particular, I’d like to credit Dr. Dean Mastras, a radiation oncologist who has answered our questions and helped us out on many occasions. He’s the brother of one of my excellent writers, George Mastras, which worked out pretty well for me. That’s like two for the price of one!”

“Dr. Mastras explained to us the concept of a ‘gamma knife,’ a treatment which I don’t completely understand… but which sounds like some very exciting technology. It’s good to know so many brilliant doctors and scientists are always hard at work trying to cure this awful disease.”

JK: Do you have something you want to say to Vince? Leave your comment here and I will send it along to him!

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Maintaining The Relationship

August 14th, 2011 - by admin

by Judy Joppie

Often times, when caring for a loved one who is on the cancer journey, our relationship status changes.  It can take many shapes and forms as well.

When my Mother was in need of my care giving, this became apparent quite quickly.  It’s not that she asked my role to change, it’s that my expectations of what my role was, that changed.  It seems like, overnight, my relationship with her reversed.  Suddenly, I was the Mother, and she was the daughter that required my care.

As expected, with this paradigm shift, came resentment and anger on her part.  If I am truthful, it was there on both of our parts.  My need to feel “in control” of the disease, dictated that she was a “good girl” and took all of her meds at the right doses, at the right time.  In addition, she was the recipient of all of the questions in the realm of eating food, showering, and other quite personal, and invasive inquiries.  As a result of this, she became the petulant daughter, resenting my intrusion into her life so intimately.

One of the roughest aspects of being a caregiver is the need to feel “in control”.   Driving this need is fear.  We are not sure what is going to happen.  We don’t want our loved one to suffer.  We think that if we take over, we can make it better.

In some aspects, we can make a difference for the good, but in many we just can’t.  As my Mother and I continued to fight, argue and cry over this disease, and the havoc it was wreaking in our lives, I began to realize something.  There were certain things that I could not control.  I had to learn where to draw that line.

One of the most important things that I realized I could control was my relationship with her.  She was the Mom.  I was the daughter.  When I surrendered to this reality, things got a lot better!  If she didn’t eat her lunch, it was not because she wanted to hurt me, it was because she…didn’t…want….to…eat!!  If she wanted to stay in her jammies all day, it’s okay.  If she wanted to get up, get dressed and go out to lunch and shop, that was okay too.  I learned that I had to let go, and let her live as she wanted, not as I thought she should want.

The result of letting go of the things I could not control, was a new relationship.  Resuming the role of her daughter allowed me to talk to Mom about my fears too.  I was 40 years old when she was diagnosed with Stage IV SC lung cancer.  It was at a vulnerable time in my life, and thinking of losing her was incomprehensible.  The prognosis that the doctors proclaimed, was bleak, at best.  That being said, she defied all of the odds that the doctors gave her and lived months beyond what was expected.

In those months, we were able to spend time together like no other time in our lives.  I can’t change the fact that my Mom died way too young, or I was way too young to not have a Mom.  But I can cherish the amazing memories and talks that we had as her life came to a close.  These memories sustain me as I live through my remaining years here, and until we meet again.  I wait in great anticipation Mom!

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Bucket List

August 8th, 2011 - by admin
by Stephanie Spar
Bucket List:
  • A list of things to do before you die.
  • A movie with Jack Nicholson and Morgan Freeman based on the idea of two terminally ill men taking a road trip with a wish list of things to do before “they kick the bucket”. (A comedy-drama)
  • Sometimes referred to as a “life list”. A way to share your life goals with friends and family.

Do you have one?

I was at my oncology center recently for an infusion, the first time I went without my caregiver/partner, Michael. I had the weird experience of having both my oncologist and my infusion nurse separately ask me if I had a “bucket list”? I wondered if somehow they were reluctant to ask this in Michael’s presence?

My answer, is that I don’t have one.

I must have been really selfish before my diagnosis for lung cancer in 2008. Even though I worked way too many hours at times, I did a lot of what I wanted – ate good food, gardened, volunteered for worthwhile causes, did useful work, read, made friends, got a pretty good education, and travelled (of course, there are still lots of places to go, but there always would be.) Surprisingly, since it happened so late, I even met a good man (and has that ever come in handy!)

I always say I did not need the wake up call to make big changes in my life. Maybe I already understood the impermanence of life and was living in the present? How lung cancer has changed me is to make me more compassionate, and both more and less patient. The two cats that came into my life a few years ago were already doing a good job of helping me to “let go” of stuff and the striving for perfection.

I am still happy to be here to eat the first strawberries from the yard, to see the flowers bloom, and to enjoy the rare blue sky. Hopefully, there will be more travel days ahead, time and energy for advocacy, and laughter with friends.

I guess that is my list, for now.

What about you?

*Stephanie is a three year lung cancer survivor and is a member of LUNGevity’s Lung Cancer Support Community.  She also participated in the inaugural LUNGevity Hope Summit this year.

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