Our community blogs
I first became involved with LUNGevity through National HOPE Summit, a survivorship conference in Washington, D.C. Seeing so many survivors and being able to share our stories and gain knowledge made the experience very special. I’m always impressed by the quality of what I learn and what is shared. The fact that the medical researchers can interact with patients in an intimate setting and participate in the roundtable discussions is very inspiring.
Going to HOPE Summit has been a springboard for many other volunteer and advocacy opportunities. At my first conference, I learned about the LifeLine peer-to-peer support program. As a long-term survivor, I wanted to use my story to try to inspire hope in others who were living with lung cancer, so I jumped at the chance to give back as a mentor.
Through HOPE Summit, I also got to know Andrea Ferris, LUNGevity’s President, and Katie Brown, LUNGevity’s Vice President of Support & Survivorship. Katie recommended me as a reviewer for the Department of Defense research grant program and I love being part of that. LUNGevity also connected me with Eli Lilly & Co. who produced an Emmy-winning documentary about my family and me. I've attended a congressional luncheon on Capitol Hill with LUNGevity, and a lab tour at Lilly.
I was looking for ways to give back in my local community, so a few years ago I started a support group in Fort Myers, Florida. The group provides wonderful camaraderie and community. We meet once a month to share stories and experiences and resources, and we also get together socially once a month. We’re a close-knit group.
In 2017, I convinced four members of my lung cancer support group to attend National HOPE Summit with me. We were so inspired that we decided to organize a Breathe Deep event in Fort Myers to raise awareness about the facts of lung cancer. We were able to share our story in local media and even surpassed our fundraising goal. We held the 5K walk and fun run on November 4 to kick off Lung Cancer Awareness Month.
Breathe Deep Fort Myers brings attention to lung cancer and the lack of funding and gives us the opportunity to get rid of the stigma. We want to let the people in our area know that you don’t have to smoke to get lung cancer, that two out of three of the people diagnosed are never-smokers or quit many years ago.
Being an event coordinator gives me such a feeling of purpose. I’ve been so aimless since I retired from teaching because of my health. Helping others through this event and through the support group is very rewarding. Our number one goal is to provide much needed research funding. We also want to raise money for patient education and support, and help continue to bring top-notch speakers to HOPE Summits. I hope that both the walk and the support group continue to grow and make an impact in the community.
LUNGevity is so patient-oriented and offers so much support and information and education that it aligns with my goals. I want to give back to LUNGevity because I feel like they’ve given a lot to all of us. That makes me want to do as much as I can to help support LUNGevity’s mission to improve quality of life and survivorship.
Melissa (bottom right) with members of the Fort Myers Lung Cancer Support Group and their families at the 2017 National HOPE Summit.
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Today we pause to celebrate new life, life continued, and hope renewed. For me this is a holy season but it has a much broader meaning, especially for those struggling with lung cancer. Christmas Day is a celebration of new life and a continuation of life. The new life is Christ while continuation is everyone alive. Including especially, those who live with lung cancer. We have at first glance an insurmountable challenge: to live with a disease that consumes our body with cells made of our body. Indeed, our disease is a paradoxical phenomena. Yet, we live. We rise above the biological paradox, thus our celebration of life continued.
The hope of the season is reflected in many ways. On earth's scale, each day length changes as we orbit towards spring. Thus hope is realized as we progress in day length and temperature change. On the lung cancer scale, we hope for good treatment outcomes and new treatment methods. Fortunately, outcomes are improving, sometimes dramatically as are methods. But the progression of seasonal change is neither smooth nor completely predictable. There will be uncertain days ahead. Similarly, as lung cancer survivors we will face disappointment and perhaps reversals. But like the season, treatment is a progression: a change over time. And the renewal of hope for survivors is the belief that progression toward success will continue.
My wish for all lung cancer survivors is the gift of life continued.
Stay the course.
In December 2016, I started experiencing a lot of shoulder pain and then back pain leading to shortness of breath. I went in for an X-ray and MRI, and was told I had pneumonia. I knew that wasn’t correct because I hadn’t been sick enough to get pneumonia. I spoke to my doctor and insisted on being seen again right away. I was sent to the hospital to have a CT scan, which showed fluid in the lining of my lungs. I had the fluid tapped for testing and it was bloody. I was referred to a thoracic surgeon and underwent surgery to have the fluid drained in March of 2017. During surgery they did a scope to look around and found and removed a cancerous mass. I was diagnosed with Stage IV adenocarcinoma lung cancer.
I was in the hospital for five days. When I got out on a Friday, I met with my oncologist. They decided to test the mass for genetic mutations. My oncologist called me at home to share the results. I was expecting bad news, but she said she had good news. Genetic testing showed that my cancer was caused by the ALK gene mutation. She told me that having a genetic mutation was like winning the lung cancer lottery because there were very effective treatment options.
At the time, Alcensa was still a second-line treatment, but my oncologist and I pushed for me to be able to start taking the drug. It was so new that I was one of the first patients at my hospital to start taking it. Just a few weeks after I started taking Alcensa, it was approved as a first-line treatment.
I have some physical challenges that impact me. Some of them are shortness of breath, muscle pain and fatigue. I have nerve pain from my thoracic surgery as well. I am also dealing with mental challenges. I am working fulltime however, I struggle with memory loss, focus and vision issues, all of which are side effects of my treatment. I also deal with some depression. I explain it to family members as mental torture. You try to enjoy living but, you are always aware that your life can be cut short at anytime. The cancer consumes your thoughts 24/7. That is really hard.
I recently became a member of the ALK Positive Facebook group, which led me to LUNGevity Foundation. ALK Positive has partnered with LUNGevity for a research grant for our cause. It’s a great partnership. I wish I would have known about LUNGevity and the ALK Positive online support group right away. LUNGevity really advocates for patients. They are such a great source for support and information. I noted that they share survivor stories and I immediately decided that I wanted to share my story with others. The more we talk about lung cancer, the more others learn and we can get rid of the stigma. Putting faces to this disease makes a real impact.
I would tell a newly diagnosed patient to reach out to support organizations like LUNGevity. Knowledge is power and there is hope. The more you know about this disease and advocate for yourself the better off you will be. It’s a scary road but a little easier when you find good support sources.
Survivorship means I am living with this disease. I hope to keep living with this disease for many years and provide support and advocate for others. I do not want to sit and wait, I want to take action to help myself and others as much as possible. We need to fight for more research funding and to make others aware of this disease.
I hope to touch others with lung cancer and inspire them to share their story and find their voice to advocate. I want to get the word out about ALK lung cancer and remove that stigma that it’s a smokers’ disease. Whether you smoked or not doesn’t matter. If you have lungs, you can get lung cancer. I hope that as others find their voices too, we can get the word out about how we lack sufficient funding for research. That is really important to me. 433 people die each day of lung cancer – we have to change this!
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Had my last chemo on Aug. 3 and C. T. scans of chest, abdomen, and pelvis toward the end of August. The 3 tumors in my lungs had shrunk and still no spread of the cancer seen anywhere else. Have recovered from chemo side effects and just been enjoying not having to think about or battle the cancer for a while. Don't seem to have any long term effects from the radiation. Had a short bout of more coughing and shortness of breath right after last chemo. But from what I've read this could have been the result of the chemo or the radiation or both. A short course of steroids took care of that and have had no trouble since then. Will be having P. E. T. scan in early Dec. So far, have been happy with my treatment. I believe it was the best I could have been given in the circumstances.
Part 3: Resources
One word that is perhaps overused in the professional cancer services field is a word that is also overused in many other humanitarian fields: “resource.” Sometimes, it seems like a catch-all. What do you guys offer? We offer resources! Hm.
What does “resource” mean to you?
To me, it means something that is drawn from by someone in need of help. Something that is stocked and available to give concrete assistance in a particular situation, and is either infinite in itself, or can be replenished.
A replenishable replenisher, if you will!
When I see fellow caregivers ask other fellow caregivers “what can I do? How can I help you?,” the answer is always the same. It’s an answer we see every time we ask the #LCCaregiver Twitter chat community the same question: what can your CG family do for you? What is the best way we can be a resource for each other? What can we do for you that is not already being done for you?
The answer is so profoundly simple: be there. Listen. Lend a supportive ear. Be a safe space for venting. Sympathize.
As much as we all sincerely want to “do more” or “be more” for those who are in our same situation, it seems as though the most important release we can expect from within the “pack” is the one thing we can’t really get from anyone outside the “pack:” understanding. As with any other experience in life, the bond formed when we realize that someone sincerely feels the same way we are feeling in response to the same stimulus is both profound and instant.
Only our fellow CGs “get” how we have time to do the shopping and the laundry, but do not have the time to answer the texts or get to the post office (or vice versa), without requiring an accounting of our hours. I swear, my dear non-CG friends and family who may see this, that I know you do not require timesheets from me, but sometimes it feels as if you do. Meanwhile, people who have undertaken a similar journey are not surprised at all when I explain that the day somehow did not actually contain 24 hours as promised on the packaging.
As useful (and awesome!) as it would be to live in a place where we could all physically pitch in for our fellow carers (a caregiving co-op of trusted co-carers? Say that five times fast…), it is MORE than enough to lend a shoulder and an “I hear you.” Your support is enough. YOU are enough. Something you have to say could make all the difference in the world for a new or overwhelmed caregiver.
So: the number one resource that caregivers have are fellow caregivers. Find them. Reach out. You’re in the right place to start, here on the LCSC: use the Caregivers message board.
Use the “LUNGevity Caregivers” Facebook group here: http://www.facebook.com/groups/LungCancerCaregivers/.
Come find a buddy in the LifeLine program here: http://www.lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring/lungevity-lifeline.
Come to our monthly #LCCaregiver Twitter chats!
If you have been doing this a while, find someone who is new to the situation. Someone who needs to be told “it’s okay. I promise. You will find the new normal. It will become routine.
Don't help me.
I am a fiercely independant woman. i am a survivor. I am strong. I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins. I will get up everyday and tackle the world. I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help. I will carry all of the groceries into the house. I will change the water bottle on the water cooler. I will carry packages to Fex Ex. I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies. I will wash and dry laundry and I will never miss a single day of work.
Please help me.
I get up everyday in pain. It takes me longer these days to do my hair and put on my lipstick. I carry all the groceries into the house and I have to sit, catch my breath before I put them away. I wait until I am practically dying of thirst before I change the water bottle on the cooler. I carry the heavy packages into Fed Ex one 5 pound box at a time. I no longer walk the dogs- that's what the doggy door is for. I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results. I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on. I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after. I never miss a single day of work- but sometimes I am working from my bed.
It's easier for me to help others than it is to help myself. While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me.
To their credit how can they know I need help when I don't look or act "sick"?
Recent EntriesLatest Entry
My name is Eleanor
I have cancer, but it is not who I am.
I am not a number or the result of a
My name is Eleanor
I am a baby at my mothers breast.
I am a toddler being thrown high in
the air by my father and giggling.
I am a young girl playing with my
dolls and my trucks.
I am a teenage girl going on my
first date full of nervous anticipation.
I am graduating high school and
trying to figure out what next.
I am a young woman walking down
the aisle with the love of my life.
I am an employee and a homemaker
I am a new mother.
I love my family, my friends, roses, cooking
I love watching sappy old movies and
going through a box of tissues while
munching on popcorn.
I love to dance and sing.
I am a woman, a wife, a mother, a sister,
a granddaughter,a niece, an aunt, I am
a grandmother and a great grandmother.
I am all of these things and more but what
I am not is a disease.
I have cancer and it may destroy my body
but it cannot touch my spirit or my soul.
So you see although my body may have cancer it does
not have me.
My name is Eleanor.