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I was diagnosed with Stage IV Lung Cancer on September 19, 2016. The doctor told us that it was inoperable and radiation was not an option. It felt as though I’d been punched in the stomach. I immediately began thinking of my children and my wife, Lisa, and that my time here on Earth was very limited. I had no words that day, only utter despair.
As the initial shock wore off, and the option of getting selected for a trial medication was offered, I realized that I may have a chance at fighting cancer and not letting cancer "fight" me. I’m ALK positive, so I was able to start taking a targeted therapy drug. It was shortly after the diagnosis and when I had no choice but to accept this as my fate, that I made the decision to fight this disease by becoming proactive in my care. I have always been a man of strong faith, and God has not failed me yet. Sometimes it takes something so big to appreciate waking up each day to your family and the people you love! I pray to God every night to give me another day.
I was looking for an organization that focused on spreading awareness about lung cancer and funding research. I also liked that LUNGevity provided so many different types of support. We created a team for Breathe Deep Boca Raton, a 5K walk and run that raised lung cancer awareness and funds for LUNGevity for research and support programs.
My wife and I are very active in our community, so we started reaching out to people to encourage them to come out and support the event. We advertised in local restaurants and reached out to local schools and youth recreation programs, and got some things going. My kids and I used social media to spread the word and I followed up with phone calls to remind people to show up. A friend of mine is in a band, so we asked them to come out and play live music at the event. Parts of the event are more somber, when we’re honoring the people we’ve lost to this disease, but other parts are uplifting and hopeful when we talk about research and the progress being made.
I think the impact in the community is two-fold. First, it helps to raise awareness about lung cancer. I felt so strongly about making sure people realize that lung cancer isn’t only for smoker. And it also brings awareness about LUNGevity and that this a specific organization to help people impacted by lung cancer. I’m grateful for the research and medication and for the support of my family, friends, and the community.
I hope the fundraising goes toward research to help find more targeted therapies. We need to fund research for treatment options that increase survival rates and help contain and manage the disease. I’m ALK positive, and there are treatments for that specific mutation, but I’d like them to find treatments for other mutations as well.
I still look at the glass half full, because today, I am still here. My loving wife and children stand with me every day in this long, tedious, sometimes unbearable cancer journey. Through my positive energy and prayers we stay strong, and in September 2017, we celebrated my one-year cancerversary!
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It was mid-morning on a beautiful February Sunday in Texas when my phone rang. Randy’s name flashed on my phone screen and on realizing who it was, my mind raced to recall the last time we spoke. Pam his wife greeted me, a mild surprise.
Randy and I grew up in the same Pennsylvanian township and attended high school together. Our lives parted with college and after an Army career took me everywhere but home. Randy settled in our hometown. We had many things in common including surviving lethal cancer.
Five years ago, Randy and I had a fortuitous meeting online in a cancer blog site. Randy was diagnosed with Chronic Lymphocytic Leukemia (CLL). We soon reconnected and were gabbling away during marathon telephone calls. When we spoke, our wives went shopping!
Our last conversation was shortly before the Super Bowl. Randy’s disease reoccurred and he was back in chemotherapy. He’d seen blood work indicators during the fall, yet he remained hopeful that treatment would again arrest his cancer. Randy’s form of CLL was characterized by adverse prognostic factors. CLL is rarely cured; never cured applied to Randy.
While recurrence and mortality were frequent topics, hope and joy always dominated our conversations. We helped each other find meaning in our fragile lives. We coached away depression. We talked about everything: music, obtuse rock-in-roll lyrics, being young, high school girls, cars, motorcycles, politics, military tactics, bourbon, ballistics, physics, even the strength characteristics of bolts. We formed a bond of friendship experienced by few.
Pam’s voice was a tell and then instantly I knew Randy was no longer a survivor. Our friendship ended on February 17th. Pam is without her beloved husband, and I am missing my dear friend. Randy was a man of great wisdom tempered by uncommon common sense. His virtues of kindness, selflessness, and courage stood like great pillars in our least-common-denominator world. Today, that world is smaller, colder, and far less interesting.
Stay the course.
October 30, 2015 will forever be the day my world changed. That day I heard those words that no person wants to hear: “You have cancer.”
I kept questioning how this could happen to me. I was a healthy, 35 year old nonsmoker, and a mom of two great children. I came to learn that you don’t have to be a smoker to get lung cancer. Honestly even if one was a smoker, would it matter? No one should have to go through this terrible journey.
Soon after my diagnosis I saw a surgeon and was told that I was not a candidate for surgery, as my cancer had metastasized to the surrounding lymph nodes. Instead of surgery, I was scheduled for 35 sessions of radiation and two rounds of chemo infusion, believing that if the treatment was effective that surgery could be an option to remove the remaining cancer. After my initial chemo and radiation was complete the tumor in my lung had shrunk considerably and lymph nodes appeared to be clear of cancer. Good news, right? Unfortunately, new scans showed that what had been an inconclusive spot on my liver had now grown into a tumor, and my official diagnosis was changed from stage 3b to stage 4. The new tumor meant surgical treatment was no longer an option, and that medicine is my only hope.
At that time my husband and I realized it was time to get a second opinion, which turned out to be one of the best decisions of my life. My new oncologist tested my cancer for genetic mutations. At the time, I had no idea what he was even talking about. Then I received a call from him on a Friday afternoon stating I have the EGFR mutation. I could hear the joy in his voice. After doing some research I came to understand that this was a very good thing, and within a few days I started to take a targeted therapy called Tarceva. My quality of life is way better than I would have ever thought possible. I’m now 37 and living with stage IV lung cancer, hoping that medicine advances faster than my tumors.
During my initial treatment I was bitter. I did not want to hear “you can beat this” or “you are the strongest woman I know” or “you are a fighter.” I just wanted to get through my treatment and move on with my life.
As much as I hate my cancer, it has taught me some valuable lessons. First, it taught me to slow down. I didn’t realize how much I was just trying to get through life, instead of actually living it. Ironically, I enjoy life more now than ever. Second, don’t sweat the small things. Living with a terminal illness helps one understand what‘s really important in life.
Kateri and her family
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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.