Archive for April, 2011

Jill Feldman

Reaching 41

April 27th, 2011 - by Jill Feldman

Not too long ago I realized that I’ve been alive longer than my dad was alive. That may sound weird, or even morbid to some, but for those of us who lost a parent as a child, it’s the birthday that is most poignant. For many, expecting their fate to be the same as that of their parent, there even is a fear of dying at that age… For me, it’s about identifying with my dad and trying to understand who he was as a person.

My dad was 41 when we he died. To be exact he was 41 years, 5 months and 14 days old. I was 13 at the time, so my perspective, like that of any young teenager, was that my dad was old. Also, my dad’s parents had preceded him in death, one by five years and one by eight months. So, in some respects it was the natural course of the life cycle.

Once I came of an age that would roughly make me my dad’s contemporary, I tried to put myself in his shoes and imagine what his life was like. Most people that I speak with who lost a parent when they were a child express some apprehension as they reach the age their parent was when he/she died. Many are surprised when they actually live past that age. I understand the sensation of reaching that age and thinking about how life would be for my family if I were to die, but I never felt the fear of dying myself. I have always said that I’d like to skip 41 and just jump from 40 to 42, but facing my own mortality is not what made the milestone so salient for me.

Of course there were some unsettling emotions when I was diagnosed with the same disease (lung cancer) that took his life, and it didn’t help that I happened to be around the same age (39) that he was when he was diagnosed and died from it. I do think about the fact that my dad probably had lung cancer earlier, and how different life would have been if his cancer had been caught sooner. I also wonder what my fate would have been at 41 if mine hadn’t been caught early. I don’t let those thoughts consume me, but when I look in the mirror there are many times I see the image of my dad. Soon, I will no longer see that image because my dad will forever be 41. After I erase the terrible images in my mind of my dad when he was sick, I will always remember him as young, healthy and active. It’s actually a beautiful thing; the positive side of me that always insists on finding the silver lining in unfortunate circumstances.

It was a strange feeling to approach the relatively young age that my dad was when he died, and it gives me the chills to actually hear myself say, “41,” when asked my age. For 27 years my association with the age 41 had been significant, but I didn’t anticipate how I would feel after I reached it; the profound loss of not having that connection with my dad anymore. There will be no more, “Following in my dad’s footsteps,” and I will no longer hear, “When your father was that age…” It definitely threatens my identity a bit. I will never again be able to correlate anything in my life with my dad’s life, and that is why it’s so important to me to understand who he was. I never got to know my dad as a person. Sure, I have great memories and stories, but only from an egocentric adolescent perspective. As I’ve gotten older and my grief has evolved, I continue to yearn for that adult relationship and understanding of my dad. I search for any story or memory that will help me discover who he was and I try to find any connection I can that will help me feel closer to the man I never got to know.

What I wasn’t prepared to feel or understand is what he felt as a parent during his illness. My son Jack and I have the same age difference as my dad and I. From the moment Jack was born, I knew I would look at him differently when he turned 13, but I never expected our lives to be quite so parallel. In a way, I was living my dad’s life, and Jack was living mine. It was especially eerie when I received my own lung cancer diagnosis. Not only could I relate to the anguish my dad must have felt, but I could also identify with the fear and uncertainty that Jack was feeling. I’m not sure which is worse. As a parent I felt heartbroken and helpless, and as a child I felt lost and confused. Thankfully Jack‘s story ended differently from mine, but it brought new emotions to the surface; the 13 year old girl inside of me is envious of her own son.

I now understand why my grief was so intense and why my ability to process my dad’s death has been a long and difficult road. I see where Jack is in his life as a teenager, trying to manage the normal stresses of adolescence, struggling for independence and fighting to create his own identity. I cannot change what happened to me at 13 and I cannot change being diagnosed with lung cancer, but after following a little too closely in my dad’s footsteps I did change the path; I will celebrate my 42nd birthday in a few months (and I plan on many more!). I feel sad that my dad didn’t get the chance that I got, but as a parent I am grateful, so I live vicariously through the happy ending that Jack and my other three children have been fortunate to experience. In a way, I feel like my survival of lung cancer was my ‘do over.’

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Dispelling the Stigma of Lung Cancer

April 26th, 2011 - by admin

By Rebecca G.

I deal with the stigma of lung cancer being a “self-inflicted” cancer.

I have been told that I shouldn’t have smoked and wouldn’t have this cancer, obviously by someone who did not know me or my history. I was diagnosed January 28, 2003.

I had turned 34 just three months prior.

I had never smoked.

I was diagnosed with IIIA Adenocarcinoma with BAC characteristics. I underwent surgery, radiation and two months of a one year trial of Iressa.

My personal life fell apart just before diagnosis. I focused on getting through treatment and ignored the problems at home to a large extent. Were it not for the cancer, I would have left a bad marriage long before I did.

I wish there had been a patients’ survivor group at my local hospital, as they have with breast and prostate cancer survivors.

Earlier in my survivorship, I was very active on the Lung Cancer Support Community forums (and now help moderate the Just For Fun Forum.)

“Survivorship” means making it one more day.

Each day adds to the years and each year eases some of the daily stress with realizing I may die of something other than lung cancer.

Lung cancer puts everything else in perspective, like being downsized due to the economy!

(If you could give any advice or words of wisdom to a newly diagnosed patient, what would it be?)

Learn everything you can about options and the limitations some treatments can put on future options, for example, too much radiation can take surgery off the table.

Speak to others who have gone through the treatments you are considering.

Take time to take care of yourself.

Make the effort to get out of bed every day, brush your teeth and change your clothes.

Some days, your greatest accomplishment may be getting out of bed, take the opportunity to have a simple goal.

Let people help you.

(If you had the opportunity to speak to the nation about lung cancer, what would you say?)

It’s time for a cure.

Lung cancer used to be a cancer that people were diagnosed with when they were grandparents.

Now, anyone can find themselves fighting an indiscriminate killer. Cancer is hell.

Even while celebrating survival, one can only feel guilty about all those that haven’t.

Rebecca G. “Snowflake” member of LUNGevity’s LCSC since 2003

( 05/26/10: Son graduates from high school – never thought I’d see it!!! )

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Katie Brown

OMG Cancer Summit NYC 2011

April 22nd, 2011 - by Katie Brown

I had the unique opportunity to attend the 4thannual OMG Stupid Cancer Summit for Young Adults in New York City last weekend. While I am a young adult survivor, diagnosed at age 22 with cervical cancer, I had never been to a summit geared just for young adults. As the Manager of Advocacy Communications and Director of LCSC for LUNGevity Foundation, I wanted a chance to network and learn and see if the issues that were being covered at this conference for this age group applied in any way to our own large constituency.

I’m a lung cancer patient advocate; lung cancer kills more people than breast cancer, melanomas, prostate, colon, and pancreatic cancers combined. While LUNGevity funds innovative lung cancer research, we are always looking for ways to improve the support and survivorship of those in our network and to connect and associate with other organizations who are doing great things for the cancer community.

What I found was interesting. The conference was filled with a sea of survivors and caregivers. My first mistake was assuming the room would be filled with teens and 20 something’s. These were survivors who had been diagnosed in childhood through their late thirties, so thankfully for me there were plenty of us who were over 30!

The vibe was electric and exciting and the speeches were full of inspiration, candor and some outrage for this neglected population and the issues they face.

Young adults face a diverse set of challenges that most of us don’t ever consider. There are insurance issues, social security disability issues, legal and employment issues, lifestyle, nutritional, relationship and fertility issues and ultimately many will face an entire lifetime of living withcancer and the effects of cancer treatments. The preconceived notion I had that any side effect would be worth another 5-10 years of survivorship when facing a terminal cancer like lung cancer was immediately corrected….

Think about a young survivor on targeted therapy living with stable lung cancer…and suddenly all those issues became very real. Imagine having to live with the pain and limitations of those side effects for thirty or FIFTY more years while fighting a terminal cancer that can be treated like a chronic disease!

Is this the cost of survivorship? Unfortunately, it can be.

I saw very young adults, with hearing aids, canes and walkers, in chronic pain because of debilitating effects of Cisplatin and other toxic chemotherapy’s. Many now have heart issues from years of radiation. They were too young for the benefit of a savings or retirement, too old to be covered under their parent’s policies, and difficulty finding work with pre-existing conditions and physical limitations and while they were fighting their diseases, they were fighting just to have a life. And I began to wonder…

These are the things our young lung cancer survivors are going to have to face.

In the eight years since I’ve been a lung cancer patient advocate I’ve seen more people survive lung cancer…it hasn’t been a highly marked improvement, but with education and proactive doctors there ARE more people surviving the deadliest cancer killer now.

With increased funding for life-saving lung cancer research like those that LUNGevity funds, there may be early detection for lung cancer one day soon and many more treatment options that extend life and offer people a curative chance.

What I’ve seen more of in the last 8 years is people under the age of 40 being diagnosed with lung cancer at a frightening and alarming rate. There are more lung cancer deaths from women under 40 than there are of breast cancer deaths!

And for those young adults who are surviving lung cancer or living with stable disease, what’s next for them?

I am so glad I was able to experience this conference and connect and network with so many incredible survivors and cancer fighters across the nation.

What I took away from this conference will help us craft even more valuable practical and unique resources for our survivors and their caregivers while they are actively fighting their lung cancer, to encourage self advocacy and offer experts who will answer questions and aid in their survivorship.

And I made some incredible connections to some incredible people I look forward to working with.

So thank you to Matthew Zachary of i2Y for putting together a great summit! I’m so glad I was able to be there!

For a recap of the informative sessions and keynote speakers from last weekend’s conference click here:

http://www.ustream.tv/user/StupidCancer/videos

You can hear our radio interview from when we were on the i2Y Stupid Cancer show in the fall:

http://www.blogtalkradio.com/stupidcancershow/2010/10/05/stupid-lung-cancer?sms_ss=email&at_xt=4db04faa639c044f%2C0

Photos on Face Book!

Visit our Face Book Page for more photos from OMG NYC 2011 !

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From Caregiver to Survivor

April 18th, 2011 - by admin

By Judy Joppie

In my life, being in the role of Caregiver was a privilege and challenge, with my little Sister, Karrie, my Dad, and my Mom. With each of them, the experience was very different. My little Sister was married, but the cancer changed her personality as it progressed in her brain, and her husband, understandably, struggled with this. When he got frustrated he would ask me to “take over” so he could get a break. Karrie’s cancer was my first experience with this disease.

As I reflect on her care, I wish I understood more about the side effects of the chemo therapy treatments. Because she was only 24 years old, we urged her to go to extreme lengths to extend her life; it was unthinkable for us to accept that she was dying. Hospice was an option for us. Karrie wanted them to be there with her, at home, as her life wound down, but we were in denial, and refused to even consider it. She died in the hospital.

When my Dad was diagnosed, we were more prepared. However, as his disease very quickly progressed, my Mom, in denial, refused to bring Hospice in. She demanded that I bring him to the hospital. When Dad begged us to take him home, we were able to convince Mom that this was the best option. He came home, with Hospice care, and died peacefully, where he wished.

My Mom was diagnosed with SCLC, Stage IV lung cancer in 1996. When she was told that the cancer had spread to her bones, liver, and brain, she refused chemo therapy treatment. She was given radiation to the brain, to ease symptoms caused by the metastasis, which allowed her to live comfortably for 9 months longer than what the doctor’s predicted.

What I learned from each of these experiences is that it is important to allow the person who is sick to maintain control of their illness.

In looking back, trying to convince my sister to continue treatments that she no longer wanted, made her suffer much more than necessary. Taking my Dad to the hospital, because we were not ready to face what he was ready to face, is regrettable. We needed to honor his wishes. With my Mom, I tried to feel “in control” by constantly checking on whether she was taking the correct medications, at the right time, asking constantly what she was or was not eating, and quite frankly, making her very angry with my controlling nature. It was not until I learned to let go of control, and let her call the shots that things finally were peaceful for us.

As difficult as it is for us caregivers, it is important to allow the patient to feel in control of their care, treatment, and life!

I am now a four year lung cancer survivor.

I am thankful that I had so much experience with this disease, as it completely enabled me to be in charge of my treatments. If a doctor told me that my next step was (X), I was equipped and able to question him/her, and be educated about my options. Because of my experience in care giving, I was able to equip my husband with what to expect, and what to be aware of.

I was able to tell him that being a caregiver is more difficult, than being a patient. At least it was from my perspective. As the patient, I understood how I felt, and how I was coping. When I was the caregiver, I couldn’t know how the patient felt. Even if they reassured me that they were okay, my imagination and fears magnified whatever they were feeling.

As a result of all these experiences, I am now a Lung Cancer Mentor for a non-profit agency here in my town. It is with joy that I meet with those newly diagnosed, and listen to their stories. It’s not my job to give them advice, but it is my job to hear where they are at in their journey, and just be a set of “ears” for them to share whatever it is that is on their mind about their disease, prognosis, family challenges, spiritual questions, and a myriad of other issues that we all face when serious illness threatens us.

In addition, I volunteer at a Cancer Support Community, helping with the various programs, with children and adults. It makes me feel that what life experiences I had, completely equipped me to do what I now do!

For that I am grateful.

Judy is a member of LUNGevity’s Lung Cancer Support Community and is also a volunteer moderator for the forums.

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Why My Mother is My Hero

April 12th, 2011 - by admin

by Tyler Rudnick

Language Arts 3/9/11 Period 5-6

Tyler and Heather
Tyler and his mom, Heather

My mom.

There are so many words that come to mind when i think of her. Funny, vibrant, caring, and most importantly my hero. I picked my mother as my hero because to so many people she was a hero, including me. She was such a great mother. Always putting my needs before her own. Always taking me on a new adventure every day. I never knew what to expect when i woke up but i always knew i would have a great day just because she was there. There was never a time that she didn’t make me smile or laugh. Even all my friends loved her and she loved all of them. They all thought of my mom as a second mother to them, and she thought of them as her own children. Always welcoming and warm. She really did make you feel at home when you walked in. Everything was just perfect until she got diagnosed with lung cancer.

At first no one would tell me what was wrong other then she was just sick because of my age. But I always knew it was more than that. She had to go into the hospital multiple times but came out within a few weeks. But as the “sickness” got worse she went into the hospital for longer periods of time and I was told that it was actually lung cancer. I couldn’t bear to hear those words, and neither could my mom. But do you think she let that slow her down? No. she stayed stronger than ever. Even stronger than me. She battled cancer for 5 years. But she never showed a trace of doubt. She made sure she did everything she could to beat cancer and still had fun at the same time. She went on cruises and climbed waterfalls and went to beautiful islands with my step dad who supported her the entire time. It wasn’t until my birthday that she got real bad. She went into the hospital after my party and stayed there for many months. She slowly got worse and everyone starting losing faith. But not her. Not my mother. she’s too strong. She made the nurses give her all her medicine at the right time and worked on breathing exercises. The tests that the doctors held showed no sign of improvement. It took a turn for the worse. she quickly became worse and was told she may only have a few days to live. Most people wouldn’t know how to handle hearing something like this. But, of course she could. She took it as a chance to live the rest of her life to the fullest. She made tons of jokes and made everyone laugh and never stopped smiling. I didn’t know she had a few days left until my guidance counselor took me out of class to tell me my dad was here. He told me he wanted to go to the hospital with me. I knew right then she didn’t have much time at all. When we got to the hospital all the nurses and doctors looked at me with the saddest eyes I have ever seen. I walked into the room and saw my mom smiling of course. I stayed and talked to her a little while. My grandma took me out into the hallway and told me they were going to make her fall asleep. After she fell asleep they would turn off the machines that helped almost all of her breathing. When i went back int the room i was only allowed to stay a few more minutes. But I couldn’t even stay that long without crying. My mom knew once I left it would be the last time she saw me and this would be the last time I ever saw her too. I kissed her on the cheek and whispered “I love you”. She whispered “I love you too”. I hugged her and walked into the hallway and cried. I was at my grandmas for my grandpa’s birthday party when my dad took me into my room and told me she had not made it. It took me a few hours to register what exactly he had just said, and when it hit me I cried all night long. but I can’t let those feeling get in the way. I need to only remember the good times and stay strong like my mother had. It takes so much strength to forget all your troubles and just live life like she had. In the worst of times, she remained confident and fearless throughout everything. May she forever remain in all of the hearts she has touched.

My family, friends and I, have a walk to help raise money for lung cancer research She has inspired so many people to have a walk of their own. She was the first person to have a lung cancer walk in this country. Now there are many across the country. She started the walk when she had cancer . When she passed away we named it The Heather Saler Lung Cancer Walk. Over 600 people attend the walk every year and we raise about one hundred thousand dollars a year towards research. It may be too late to save my mother but it’s not too late to save people in the future.

Hopefully one day there will be a cure for lung cancer. Until then we will have this walk every year until a cure is found.

This is why my mother is my hero

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