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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
Summer has ended and baseball is in World Series mode. I’m a long suffering Philadelphia Phillies fan — a Phanatic! To have a lifelong fascination with a mediocre baseball club requires supreme dedication, unusual perseverance, and a strong conviction that tomorrow will be a far better day. These attributes are prerequisites for facing a daunting lung cancer diagnosis and enduring the arduousness of treatment.
Danny Ozark, once manager of the Phillies, took the team from perennial cellar dwellers to contenders. He explained his formula for success thusly: “Half this game is ninety percent mental!” Dismissing the missing half, the same can be said of life after lung cancer treatment.
Presume diagnostic and treatment routines of lung cancer are largely similar; the unique and difficult challenges occur post treatment. Adding Ozark’s missing half, coping with post treatment life challenge "is ninety percent mental.” Individually, each will face a distinct challenge set but universally, life will be different than life before treatment. How so?
First was a misplaced expectation to return to pre-diagnostic life. After NED, there were so many things I could no longer do. It took a while to realize I needed to carve out a new lifestyle. There is a new normal life after lung cancer, but the mental challenge is finding it. No one gives you new normal; you have to make it.
Several side effects became chronic conditions. Coping becomes a mental challenge. Everyday, I play a round of mind over matter. Most days my mind wins but I have to live with losing days. Too many in a row and I need help. Fortunately, my wife is a godsend. Plan to have someone trusted close by.
I’ve learned to go well out of my way to avoid confrontation. There are no “civil” discussion these days. There is disagreement, branding, insult and anger. My spin cycle goes one step farther to pain. If I walk away, I may have a good day. I won’t if I don’t. I’ve learned to control how I feel about something and not caring enough to have an opinion works well indeed.
My new normal life is both challenging and enjoyable. Achieving that state involves application of Danny Ozark’s recipe for baseball success — new normal life “is ninety percent mental.”
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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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I was 52, a wife, mom and teacher when diagnosed with stage 3a NSC Adenocarcinoma lung cancer in September 2012. I had no symptoms and did not fit the criteria of a lung cancer candidate.
An observant radiologist had noticed a small shadow in my lower right lobe when viewing an unrelated abdominal scan in 2010. Because I didn’t fit any of the LC criteria, no specialist or surgeon thought that it would be lung cancer. They adopted a “wait and see” plan using two six-month scans and then moved to a one-year scan at which that point indicated that my “nothing” spot had in fact grown and was probably lung cancer.
My world had been turned upside down. I quickly had surgery to remove my bottom right lobe and several lymph nodes. Unfortunately, cancer was found in the lymph nodes and the tumor. This led to four rounds of chemotherapy (Cisplatin and Navelbine) and 25 treatments of radiation along with all the mental and physical issues that many people can only imagine.
Cancer can be a very lonely disease even when you have a ton of support. I couldn’t find survivors in my area so I began searching out on-line groups that I could communicate with about my disease. This is where I discovered LUNGevity! The members of this group and all those associated with the organization wrapped their cyber arms around me and welcomed me into their world. This was literally a life-saving experience for me and continues to be part of my daily communication.
Two years ago, people in the group began speaking about the National HOPE Summit in Washington, D.C. and how beneficial it was for both patients and caregivers. Because I am Canadian, I inquired as to whether my husband and I could attend. I was told of course we could!
My husband and I attended HOPE Summit and that experience has changed my life. Meeting other survivors and hearing from physicians and researchers empowered me to return to my own country and begin asking questions about lung cancer research and most importantly, begin my work as a lung cancer advocate.
The Summit allowed me to meet so many people who are advocates not only for their own health but also for lung cancer research and advocacy work. These people meet with politicians, organize, and participate in lung cancer fundraisers and teach so many of us about treatment options.
Although Canada does not have as large a network, there is a small group of us who have been empowered to meet with politicians, educate and support others with the disease and spread the word about early lung cancer diagnosis, all because of our experience at a LUNGevity HOPE Summit.
Education is power but knowing you are part of a strong, supportive, and knowledgeable group of individuals is invaluable. Thank you LUNGevity!
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In March of this year I was diagnosed with stage IV NSCLC, Adenocarcinoma, as the result of a case of pneumonia. Already under the care of a Medical Oncologist as the result of having been treated for another type of cancer the previous year. That treatment went well, NED. On my first consultation he explained the standard treatment options for stage IV. What I was hearing ( and said to him), was, "So the bottom line is I'm dead." I have to admit that I taped the consult and was a bit ashamed of myself when I listened later. I actually like my Med. Oncologist but was very aggressive. Finally, he said, "Okay, you're young ( not really), and healthy and respond well to treatment, so let's go for a cure." He had done a study with some other doctors on treating Oligometestatic lung cancer with a curative intent. Oligometestatic means, in my case, that I had a nodule in my left lung and 2 in my right lung, but P.E.T. showed no spread outside my lungs. C.T.'s done since then still do not. Talked with my family and we decided within 24 hours to go with his plan. His plan was to give me S.B.R.T radiation on all 3 tumors followed by chemo. Then hit a snag with Radiology Oncologist. He didn't want to do rhis. His concerns were that it wasn't standard of care ( it has since come into standard of care) and that I'd had 33 standard radiation treatments to my right breast the year before, so he was considering possible toxicity issues. I persisted, my Med. Oncologist persisted, and by God's grave a new doctor had just come on board at my hospital about the time I was diagnosed with extensive experience in S.B.R.T. So, I got my treatment. I had 5 fractions of 1000-1500 centigrays of radiation for a total of 4500-5000 centigrays over a 2 1/2 week period. It was done twice a week. Normally S.B.R.T. is done daily or every other day. I'm thinking my Rad. Oncologist chose to do it this way because of his concern about toxicity. The physicist assured me when I ask that the fractions were too high for the cancer to develop resistance in that length of time. They treated all 3 tumors each time. This took about 1 1/2 hours and I was required to lay totally still the entire time. That was the only difficult part. Had no adverse reactions to the radiation at the time and have not had any to date. Next scheduled for 4 chemo treatments of Cisplatin/Alimta spaced 3 weeks apart. Am one week out from my second treatment. Can't say I've had no side effects from this. You guys know exactly what I mean. Lol. The only scans I've had were brain M.R.I. and 2 abdomen/pelvic C.T.'s since diagnosis. Both were clear. Med. Oncologist plans to scan lungs at the end of chemo as of now. So we will see what we will see. Hoping this works out for me and will also help someone else down the road. Many thanks to Tom Galli for suggesting I do this blog, all his support, and hanging in there with me until I could figure out how to get it done.
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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.