Steff

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.

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.
 
 

Today, on our Thanksgiving holiday, I am thankful that all in this photo, taken in November 2015, still survive.
Stay the course.

How does one find joy in lung cancer?  I find some of mine by celebrating survival, and there is no better way than to attend a LUNGevity sponsored Breathe Deep event.
Our's was a pleasant but breezy fall Texas day and about a hundred of us showed up to the celebratory walk-jog-run event.  Our pleasant jaunt around the Arlington Texas park also raised thousands of dollars to undertake LUNGevity focused research for new diagnostic and treatment methods for lung cancer.  But, while fund raising is vital, celebrating survival is even more important.  When we meet and walk together, we become a powerful symbol of hope.  We become energized.  We find a moment of joy.
Forum moderator Susan Cornett and I met each other for the first time at today's event.  We've been internet connected for nearly 2 years but our in person meeting was a wonderful experience.  We talked about vacations taken and planned, survivor memories, and shared life experiences.  I took this photo of Susan with her mom and dad who turned out to help Susan celebrate life after lung cancer.  We had a grand time.
Stay the course.
Tom

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. 
Judy M. 

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.
I’m here.”

Part 1: Routines
Are you a person who likes routines? Or are you a person who likes to play things by ear, deciding in the moment?
See: I had always thought I was the latter. I am not the most organized person in the world (sorry, family!), except in those moments when I absolutely have to be. So, it’s always seemed easier to me to make plans on the fly, at the last practicable moment.
Or, so I thought.
Funny thing about lung cancer: it’s a “canceller.”
A what?
A canceller.
Picture the big, important businessperson of cliché-fame telling her assistant to cancel all her appointments. All her phone calls. Something else has come up. Something bigger. Something that has to be handled NOW.
Well, that’s a canceller. Lung cancer is one of them.
It’s the feeling you get when you realize you don’t have your wallet. It’s the huge spider that’s headed for your foot that makes you not care that you’re dropping your pile of clean laundry. It’s the face you make when the grocery store is out of the one item you really needed for dinner (seriously. The ONE thing. The thing that made you get up and go to the store. Really?!).
Only, worse. Much worse.
I’m not saying anything new to you. If you’re here, it’s because lung cancer has reared its ugly head in your life already. I am so sorry for that. I do not mean to dwell in that place.
Rather, I want to talk about the thing that happens after the “canceller” throws its wrench in your plans.
It turns out, much to my amusement and chagrin, that we…well, we try and find routine.
If I’ve said one thing to new caregivers more often than any other thing, it’s: “don’t worry: it’s terrifying now, but eventually it will become routine. No less terrifying, but it will become routine. You’ll find it.”
Here’s another phrase I am certain you have heard: “the new normal.” “Our new normal.” “This is our new normal,” “we’re finding our new normal,” etc. See: even in the face of the canceller, we scramble to assemble pieces of routine to create a new façade of having planned at least SOME of what is going on. We crave a normal. And, what else is “normal” if not going about some form of daily grind, fairly certain about at least a majority of the events to happen in any given day?
Trust me, I’m the kind of person who never would have thought she found comfort in routine. But, I do. And chances are, you do, too. The very nature of the “canceller” is that it is the event in your day that you never expected, never had written in your planner, and dealing with it requires a tightrope walk between the planned (appointments) and the unplanned (results).
Like so many other perspectives and perceptions, becoming a caregiver cruelly removes this inherent ability we all have: to subconsciously rely on routines for safety, while all the while cavalierly denying the need for routine, thinking of it instead as a boring or stuffy way to live. Ohhh how foolish I was! I used to brag about not being a creature of routine: I craved spontaneity and I sought ways to keep the days interesting. I thought that the difference between getting coffee at the same shop in the morning on some days and in the afternoons on other days would save me from ennui. I really thought I had this all figured out.
But then, when mom was diagnosed and we were figuring out our new roles and jobs and needs and priorities, I was left aghast at how I was suddenly and sharply yearning to wake up at the same time the next morning and get coffee at the same place and take the same grueling hours to get through my same inbox. I didn’t want to deal with oncology appointments and scan schedules and treatment research and insurance verifications. Who does? That grass on the other side was urgently bright green, and all I wanted was the down-to-the-minute synchronism of the day before the diagnosis. Who wouldn’t?
Our routines are also where we as caregivers tend to notice our sacrifices in the clearest terms. “Okay—I can run these errands today and still get in about three hours of my own paperwork.” “Okay, well, that took longer than expected, and I didn’t have a good dinner planned, and that’s on me, my bad, so, well, I guess I can scrunch up that three hours into one hour and just do my best to get it all done.” “Well, okay. I really didn’t know the kitchen would take that long to clean. I’ll try to get my stuff done tomorrow.” And so on and so forth. It occurs to me to assure you that I am not complaining: I would never. Caregiving is a choice I made, and one I feel blessed to be able to make. I am just trying to give voice to what I have learned is a common but unspoken experience in the journey. The lonely hours I used to begrudge giving to email and other necessary evils are now hours of peace and quiet that I miss.
How often, as a caregiver, have you been told to “take care of yourself first?” It’s probably a piece of advice you’ve heard many times, all from well-meaning folks: other experienced caregivers, or perhaps loved ones who are worried about you. I maintain that taking care of yourself is often antithetical to the idea of caregiving, but putting that aside for the moment, notice: so much of what we really want for self-care is actually just a return to routine. Time to get to a salon. Time to take on an organization project at home. Time to bake. Time to knit. Time to do any number of mundane things that got left on the back burner when lung cancer rang the doorbell (out of nowhere. Rude).
For me, Sunday afternoons are the times when I am most aware of this juxtaposition. On Sunday afternoons (or, on holiday weekends like last week, Monday afternoons!), I try and take the time to do the small things that sit undone in the busy-ness of business hours: change dead lightbulbs, refill the coffee pod carousel, wind the analog clock. Odds and ends. It is meditative work. It’s repetitive. It’s calming. It needs doing, but I find such joy in doing it.
It’s…routine.
Routine is a teddy bear that gets taken from us, and we spend much of the process of coping with cancer and caregiving trying to pick the perfect replacement teddy bear. It has to be one we can afford, and it has to be one we can fit in our arms with everything else we must carry.

I had an interesting chat with my general practitioner over the Fourth of July holiday.  He’s a gentleman rancher with an abundance of tomatoes so I brokered an invite to his beautiful ranch to relieve him of his abundance.
A social cup of coffee segued into a wide ranging conversation about medicine, ranching, politics, engineering and cancer treatment.  Doc has lots of opinions but they are founded on deep study and comparative analysis.  But, unlike most intelligent people, he rarely uses technospeak but rather explains complex topics in easily understood words and concepts. Thus fostering interesting conversation. The topic turned to patients seeking second opinions and physician egos.  His words are worth capturing: “I don’t mind a patient seeking a second opinion…I get paid.”
Doctors are important people in our society. Our adulation of their skills causes us to forget that in a pay for service system, customers have a right to express dissatisfaction and seek alternative practitioners.  If you don’t like the medical service you pay for, find someone who provides better service.
Stay the course.