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I found out that I had lung cancer back in August of 1999. I had 3 bouts of pneumonia in the first 6 months of that year. The last chest X-ray showed an area of concern. The next step was to have a CT scan of the area. I had the CT and they saw a blockage in my right lung between the lower and middle lobes. I was sent to see a pulmonologist and he scheduled a biopsy. He preformed the biopsy and they found a tumor that was blocking the area of my main bronchi between those two lower lobes. They tested the sample from the biopsy and it showed Non Small Cell lung cancer. I was staged at 2B.
At that time they asked if I’d be willing to try a new approach in treatment. I said yes. The new procedure was to give me 6 rounds of chemo then 39 radiation treatments and the surgery to remove my two lower lobes in my right lung. The “old” way was to reverse those steps. Since then they have found no change in survival rates doing it one way or the other. My comment is 18 years and I’m still here. I think it worked great!
Of course all these years later things have changed but not until recently. When I was diagnosed the Internet was in its infancy. There were no lung cancer support groups on line or in hospitals. We didn’t live long enough as a group to have a call for them. There were cancer in general groups but I was on the young side of the equation which put me in a smaller population. I wish there had been more groups or on line groups.
I had a young family, I owned a small landscaping business and I paid my own health insurance. My wife was a stay at home mom who worked part time. We had decided it was more important to us to have the children have a parent available and I would just work longer. At that time my heath insurance was an HMO and was the cheapest I could find. But this is when the health insurance crisis started. My premium went from under $400.00 a month to over $1800.00 a month in a year’s time. I somehow managed to stay working through treatment and the surgery. Thank you my friends, relatives, and employees who carried a lot of the load. After surgery my wife had to go to work full time to get us health insurance. For a few months we somehow made it without insurance.
I started the survivorship journey dealing with multiple doctors’ appointments, testing appointments and running a business. It was not easy but as with anything you make adjustments to fit it in. You have to. The first five years of this survivorship was learning how to negotiate my way. I’m in a physical business. I can’t do what I used to. I had had a bad back for years since the cancer, my back has been great! I can’t swing a sledgehammer or chase a lawn mower or anything rough that I used to do. Instead I worked my way around it. I bought a riding mower, can’t do all the lawns I used to but I can mow larger lawns easier. I can’t move wheelbarrows full of soil, rocks or even plants but I can run a tractor and do it that way. I can’t run anywhere but I walk and I get there slower but not that much slower. You will find new ways to do things and or you don’t do something’s.
I remember my wife asking the surgeon what will my husband be able to do after the surgery. He said well if he said he played tennis, I’d say he couldn’t play that anymore. I guess the look on her face made him ask why do you ask. He owns his own landscaping business. Oh, hmmmm, I have never told a patient that they couldn’t do something but you’ll know what you can or can’t do. So that’s how I took how I’d live my life. I’ll try to do everything and see if I can. If I have to perform this or that I will find away.
Over time I have realized how lucky I’ve been to survive this long. After a few years I went searching the Internet for someway for me to give back. I found the Lung Cancer Alliance through their website and online support group. That is when I started to talk to anyone who was newly diagnosed with lung cancer. I vowed I would try to make sure that no one would start this journey without someone to say I know how you feel and it’s ok to be scared, alone, and despondent. No one knows what it is like to have someone tell you, you have lung cancer, any questions? As they did to me the very first time anyone even mentioned to me that I had cancer. Scared is not even close to how I felt.
I found out about LUNGevity from a couple of survivors who were on another site. I also found that I noticed more advocacy from LUNGevity in respect to serving the lung cancer community, informational posts that I found very interesting and the very active organization that seemed to be everywhere reaching out to those in need. It certainly fit with my own advocacy thoughts about trying to reach out to the newly diagnosed.
As a closing thought, try to always keep in your mind, there is always hope, hope not only for today but for tomorrow and the next day and the day after that!
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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.
I was first diagnosed with small cell lung cancer (SCLC) in January of 2014 from a biopsy of the tumor that was sitting on top of my left lung. I had no symptoms I was ill yet I was urged by a radiologist who was a friend of the family to get an early lung cancer detection CT scan of the chest because I had been a smoker years before and grew up in a household of heavy smokers. So for me, it came as a total shock when I was told my diagnosis and “to get into the city for treatment, ASAP. “ For the next two years, I went through the standard treatment for limited stage SCLC, -chemo, radiation to the tumor, and prophylactic radiation to my brain. Good news, the tumor had shrunk but bad news, a new one had begun to grow in my abdomen. Now there was no option left for me except to go on an immunotherapy clinical trial, which I began in June 2015. I know I’m one of the lucky ones. I’ve survived over two years thanks to being enrolled in the clinical trial with the bonus of having virtually no side effects.
I first heard about LUNGevity through my oncologist when he invited me to be one of his “patient-guests” at LUNGevity’s Gala in 2016. Encouraged by the speakers and to learn about more about LUNGevity’s focus on increasing the quality of life for cancer survivors and their caregivers, I contacted Katie Brown, LUNGevity’s Vice President of Support & Survivorship, to become a volunteer. I wanted to support other SCLC patients who were probably as confused and conflicted about their choices as I was when I was first diagnosed with this less common type of lung cancer.
Katie gave me information about “LifeLine”, LUNGevity’s peer-to-peer support program that matches patients and caregivers to mentors with similar diagnoses. LifeLine mentors forge a personal connection by getting to know their mentee, offering words of encouragement, and by sharing aspects of their own cancer experiences. LUNGevity connected me to my first LifeLine mentee in early 2017.
When I’m on the phone with mentees, I try to get a quick take on what that individual would like to get from speaking with me. I usually keep my personal saga with SCLC brief so the mentees have a chance to tell me what’s been on their mind. Sometimes, a particular part of their cancer situation is upsetting or causing frustration, while other times, they would just like to talk it out and have me listen.
If I hear we have points in common, I’ll say something like “I get it. X-Y-Z happened to me, too!” Then I reassure them that they will get though it and find the solution that’s right for them. Some mentees just want a one-time chat to know someone else has survived the same illness. Others, who don’t have anyone they feel close to, might call me more frequently.
One time I called Katie to get her advice on how to handle a situation that I felt was beyond my capacity to deal with. She was very understanding and together we came up with workable solution. So if you become a LifeLine mentor, don’t be afraid to reach out to the LUNGevity staff. They’re there to support you, too.
The most rewarding thing about being a mentor is hearing someone newly diagnosed with SCLC say, ”Oh I’m so glad I talked to you. I feel like this is doable now. If you survived, maybe I can too.” Hope is the most precious gift I could ever offer somebody, which may sound a bit drippy, but it’s so true. I get to offer hope every time I tell my story that I have survived longer than I, or anyone else, would’ve believed possible.
Photo credit: Ben Hider for the CURE Magazine
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"?
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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.