Susan Cornett

I am writing this from the pool deck of a cruise ship while on a transatlantic sojourn. Our fourth transatlantic and our favorite form of vacation, we cross then pick several countries and explore. This year, after docking at Barcelona, we fly to Ireland and tour the wild and unpopulated western coast, then spend a long weekend in Edinburgh, and fly home. The cruise and the touring after is wonderful. The flight back is a nightmare because my incision scars throb in pain in a pressurized aircraft. We need to make the return flight in two legs (overnighting in Boston) to recover from the pain. 
The national hope summit concluded, and missed for the second time because of our annual spring migrations, I tell you about our cruise as two examples of hope.
First, we undergo treatment and endure discomfort for a reason -- extended life. It is important to shelve the treatment and uncertainty mantle to do something enjoyable with this life extension. We enjoy these long (and reasonably priced) repositioning journeys on a cruise ship.  We step out of the mundane and into the lap of luxury and enjoy interactions with the international assortment of passengers we sail with. 
Second, to the essence of hope, if I can survive to do this, so can you.  
I will never go back to my lifestyle before lung cancer. But, I can have an enjoyable and meaningful life after lung cancer. And, my attitude dictates the amount of joy and meaning experienced. It is so important to realize this point. We endure treatments for a reason. Find your reason. Revel in your new normal. 
Life indeed is what you make it. Make yours. 
Stay the course. 
Tom

Perhaps you’ve heard?  The federal government is a large insurance business with a standing army.  Social Security is insurance — a specific kind of insurance called an annuity.  The insured and employer pay premiums every month to fund a defined benefit at a specified year (normally your federally mandated retirement year).  Everything is peachy-keen till a disability affects work because one has late stage lung cancer.  And, when a lung cancer survivor files for disability, allowed by law and regulation, the federal government almost always disapproves.  So, here are some suggestions for obtaining disability benefits by disapproval.
1. Expect to be Disapproved. I know a lot of folks with lung cancer.  Among this population, only one was approved on initial application.  He passed before he received his first benefit check.  My company provided disability insurance carrier filed my first application.  I had an unresolved bronchopleural fistula after a pneumonectomy that required a second and third surgery and indications of tumors metastasized to my remaining lung.  My claim, filed by a former Social Security claims adjuster, was disapproved.
2. Involve Your Doctors.  The disability application requires you to disclose all your physicians and medical providers.  Then, the administration asks for medical records, reports and observations. Doctors are busy folks; oncologists are bombarded by SSA requests for information, and for good reason.  Late-stage lung cancer (including treatment and side-effects) is often disabling.  Inform your medical providers of your application and ask them to help by responding to the request for information.
3. Complete the Application. The Social Security Administration is a bureaucracy.  Bureaucracies love to find “nits” in applications and return with some very vague description of the problem. This delays a decision and delays payment, and these are typical insurance company behaviors. Read every word of the disability application process (it is all online at www.ssa.gov) and check your application closely to ensure it is complete and error free.  Have several family members check it also after reading the application instructions. Ensure you completely describe your symptoms including those caused by side-effects.  Also, completely describe how these symptoms affect your ability to stand, sit, walk, bend over, think, concentrate, and etc. (Hint - read the criteria that will be used to determine your disability finding and use those words as descriptors).
4. Understand the Fine Print. There is payment delay: six full months after the date of disability (date shown on claim approval letter). Depending on other income sources, payments may be taxable. You are not found to be permanently disabled.  Regulations allow a review of your status after start of disability payments. It is not a good idea to join an adult softball team while receiving disability payments! You are not eligible for Medicare until 24 months after receipt of first disability payment. Your disability payment will be less than your full retirement benefit, and when you reach retirement age, your retirement benefit will not be increased. 
5. Lawyering Up. Filing the initial disability application online is a good idea, as long as it is properly completed and supported by doctor reports and observations.  But when denied, it is time to level the playing field and retain a lawyer. Not any lawyer, but a law practice that specializes in Social Security Disability appeals.  By law, they cannot charge you for their services.  They collect fees directly from the Administration if an administrative law judge approves your appeal.  And, most important, they know what they are doing and it is in their financial interest to do a good job on your appeal!
The disability process is deliberate, lengthy and frustrating. Like lung cancer, success involves persistence. Insurance companies don’t relish paying claims and every approved disability claim turns a premium into a disbursement.  But, Social Security is insurance with disability payment provisions that you pay for!  If you can’t work, apply, appeal and persist!  
Stay the course.

"Boy, what a week!"
...How many of you know that phrase by heart? All of you! (And not always starting with such an innocent word as "boy...")
Well, that's been my week. And I know it probably has been for you, too.
Just by way of illustration: I went to the grocery store a week ago. On the day of my mom's most recent treatment. Mom's treatment stays usually last about 6 hours, so the day is toast by the time we get home, and we are "pooped."
So, back to the groceries.
I. Just. Now. Finished. Unloading. The. Car.
Don't get me wrong: I got the precious perishables out as soon as we went inside.
But the rest? 
It slept in my car through a week of hot-cold-stormy-sunny. Once we had the front door locked, the outside world vanished.
This week progressed similarly for the rest of our responsibilities, too: we felt under the weather (literally and figuratively), so the ticks on the tick-off list just didn't get ticked. 
I am absolutely sure that each of you knows that feeling. That's one of the safety nets of this community: nobody knows what it's like until they've been there. Not really. That's what helps to build our Caregiver community and our LC community. That's our familial bond. 
But, like most weapons, it can be a sword or a shield. Sometimes, that bond can also be a burned bridge.
Have you ever been challenged by another Caregiver? Asked to defend why you chose a particular approach for your loved one? Asked why you haven't done this or tried that?
I have. And I bet you have, too.
It hurts. 
Not only does it imply that one approach is better (which is condescending), but such criticism places an additional burden on already overwhelmed shoulders: explain this to me! Justify this to me! Take the time to research my position!
Even as we build our bonds as Caregivers, and even as we acknowledge the struggle that unites us, we must always remember that every family is different. Every patient has different needs, so every Caregiver must respond to THAT patient, OUR patient, rather than to some "ideal" formula of caregiving.
Want a live-in aide? Hire one. Don't? Then don't. Same with choosing treatment plans, listening to holistic practitioners, which tasks to assign friends and family, which information to share with whom, how to make the calendar...anything.
I'm as guilty of this as anyone, but I try to consistently remind myself: we are on the same journey, but along different paths. And that's okay.
I would be honored if you would join us at our next monthly #LCCaregiver Twitter chat: tomorrow, Wednesday 4/5, at 8pm ET. Just follow #LCCaregiver to participate. Everyone is welcome. Bring a friend. Tell a fellow Caregiver. Have your loved ones chat alongside you.
I am so excited to share with and learn from you.
The questions and topics are below, so that you may review them before we "meet" tomorrow night.
Love and thanks,
Danielle
?
Did you find support among other caregivers or do/did you find it more challenging? Why? 
Have you experienced feelings of guilt or judgement placed upon you by other #LCCaregivers?
What are some of the tensions that can erupt between carers?
What are the different tensions between #LCCaregivers in families vs in support groups?
How can a new #LCCaregiver prevent caregiver conflict and competition?
Are there any tips or resources that can help an #LCCaregiver dealing with competition and judgement?

The lights dim, the announcer’s introduction complete, now all the stand-up comedian needs to do is be funny. We’ve all seen one bomb.  Even the best have a bad night.  Overcoming fear must be a prerequisite for a comedian. Comedian and author Jerry Gillies developed an excellent approach for handling fear: “Confront your fears, list them, get to know them, and only then will you be able to put them aside and move ahead.”
This is very relevant advice for a lung cancer survivor.  I practiced a broader form of writing down fears by producing a journal of treatment experiences.  I still re-read that journal to keep connected to my treatment.  While I read the entire entry, I concentrate on what I was afraid of. So in a broader sense, I practiced Jerry Gillies' sage advice and benefited from it.
The power of writing down fearful things is important because my fear quickly morphed into a monster by spawning a multitude activities that I may or may not have been frightened by. For example, chemotherapy infusions were frightful events — at least that is the way my journals in early treatment read.  But was the entire infusion process frightening?
What I was afraid of was installing the IV, not the stick, but the wiggle to find the right place to situate the device.  An irrational fear because wiggling generates a mild discomfort but in my mind, wiggling is enduring torture. I have this mental picture of being strapped to a chair for interrogation while nurse-after-nurse “sticks and wiggles” on every extremity.  Just last week during a blood draw, the head phlebotomist had to pin me to the chair because I was “going down” during the procedure. A quick application of smelling salts saved the day!
Following Gillies’ advice, I would write down “wiggle” on my list of fears.  Getting to know my fear of wiggling produced some ways to put it aside and move ahead.  My first way was Xanax.  One mg of Xanax about 30 minutes before a procedure and IV installs are a piece of cake.  Another way is to tell the nurse ahead of the procedure that I have a phobia and not to wiggle; pull it out and try another vein.  
Another journal reveal is fear of pain caused by lung cancer progression.  Reading disclosed metastasizing tumors invading my spinal chord causing excruciating pain.  My oncologist dismissed this by explaining palliative radiation and hospice care. Thus, I was able to put this fear aside and continue on.
A lung cancer diagnosis is the most frightening event in my life, treatment is a close second, and recurrence follows.  Lung cancer trumps everything else I deal with. But, I learned to face this fear.  Writing about fear helps me understand it and deal with it.  Jerry Gillies’ approach works.
Stay the course.

We often hear smoking gun used to describe the “ah ha” moment of a who done it.  I was unsure of the meaning and asked Siri.  My Apple genius defined it as “as piece of incontrovertible incriminating evidence.” 
I know two things with high confidence: (i) there is a very strong correlation between smoking and lung cancer, and (ii) implying smoking as a cause adds to the self-induced stigma that smacks down research for my disease. So, how do we address the stigma without pointing the smoking gun?
I couldn’t stop because I was addicted to nicotine.  When I was young and fearless, almost everyone smoked and I joined the crowd.  In my 30’s, most quit.  I tried, many times and ways, but couldn’t.  My addiction was stronger than will power.  Addiction is irrational.  Most addicts recognize the harm, but recognition caves in the face of physical craving. 
How is addiction to nicotine different from alcohol, heroin, or cocaine? It isn’t but what do the health authorities call it?  The Center for Disease Control (CDC) says smoking caused 480,000 deaths last year in the United States. Note absence of the word addiction.  The CDC also says about 88,000 people die annually from alcohol abuse.  Note abuse is not addiction.  Almost 35,000 people died from heroin overdose in 2015, according to the National Institute of Health.  Note again, overdose is not addiction. It is unreasonable to suggest these deaths resulted from one time or occasional use.  
I contend not using addiction to characterize the root cause is part of the problem.  If I smoke, abuse or overdose, I am branded guilty of doing something wrong.  I am causing the problem.  There is no disease or medical abnormality; therefore, there is nothing to research.  This individual guilt becomes a collective stigma.  If our national health authority doesn’t treat use as addictive, it certainly won’t be prone to find new treatments. Nor, will there be interest in treating consequences.  Thus, the paltry research funding for lung cancer.
Many people experiment with addictive drugs and are fortunate to stop short of addiction.  But, when one can’t stop, one is addicted and mechanisms must be found to treat the addiction. So, let’s change the nomenclature.  I am addicted to nicotine and my addiction likely caused lung cancer.  Where is the smoking gun pointed now?
Stay the course.

Today we celebrate 13 years of surviving NSCLC.  I'm borrowing three toes from Martha, my wife and caregiver extraordinaire, who deserves most of the credit for my continued life.  Martha did the heavy lifting during treatment, asking the right questions at the right time, and prodding my medical team with just the right touch.  By comparison, I was at wit's end during my nearly 4 years of continuous treatment.  Doctors McK (GP), H (Oncologist) and C (Thoracic Surgeon) also deserve a lion's share of credit.  Collectively, they share a trait that distinguishes them from the rest of medical community -- they treat people, not patients.
The red toenail painting tradition was started by a Dr. Phillip Berman, radiologist and never smoker, who was diagnosed with Stage IV NSCLC.  In an early Internet cancer website he founded, RedToeNail.org, he vowed to paint a toenail red for each year he survived what he called "this nastiness."  He painted 5 before passing but taught me a great deal about living with lung cancer.  During treatment, he was playing with his children, exercising, interacting with friends, and finding something to enjoy every day.  In other words, he embraced the life he had and lived every day reveling in the joy he discovered. His lesson -- those who choose treatment choose life and the important thing is to do something with the life you have.  I pass his powerfully evocative message to you.  If you suffer with lung cancer then resolve to live every day and find something to enjoy.  Realize that if I can live, so can you.  Paint your toenails red!
Stay the course.
Tom 

Welcome! Settle in. Get comfortable.
If you’ve joined us here, lung cancer has touched the life of someone you love, and has thereby touched your life as well. I am sorry.
Well: I am sorry you are going through this, for sure, but: I am so glad you have found us here. Excited, even. You have found a new family, and a new wealth of resources. You will not be alone in this (insert your preferred word: some say “fight,” some say “journey,” I say “process”)! 
A few words about me, so you know who you’re “talking” to: I’m 29, and I’m a full-time caregiver for my parents. My awesome mama was diagnosed with Stage IV NSCLC in March of 2015, and has been on an immunotherapy (PD-L1) clinical trial ever since. My awesome papa has other serious health issues, so we all hang out together, as a team, three stooges making the most fun we can (we’re good at that) and doing our best to keep the to-do lists at bay.
Ahhh, those to-do lists…
Ahem. I’m sorry. That’s a topic for another day!
I’m a Social Media Ambassador for LUNGevity (more info here), and a volunteer for other projects of LUNGevity and for various other lung cancer organizations. I am a full-time advocate for better lung cancer care, research, and treatment. You can find me on Twitter @Actorielle, and on Facebook at Facebook.com/Actorielle or at danielleremkuspardue.com.
Most importantly: I’m invested in YOU, in US, and in what it means to be a “Caregiver.”
I have no particularly special training, and no specialized skill set for the tasks and responsibilities of “caregiving.” Here’s the secret: none of us do. We all learn by doing. We learn as we are called upon to fulfill needs. Bridging gaps between an uncompleted chore, an unshopped grocery trip, and an unresearched new treatment. We all tend to launch (or, rather, be launched) into this lung cancer world, with differing levels of healthcare experience, and all grasping for every bit of credible information we can find. Every bit of comfort, reassurance, honesty, and…help.
That’s just it. We all begin this process needing all the help we can get. Your loved one, your patient, has his or her medical team, and has you. You, in turn, can have us. This. LUNGevity’s resources for Caregivers (start here) are vast, and practical, and vetted. You can find everything from peer-to-peer mentoring, to message boards, to an individualized app that organizes your specific lung cancer experience. However: amongst all these tools, where does that leave you, the person of the Caregiver? Where can you feel…Connected?
Here.  In addition to your family and friends and extended support network, join us here!
LUNGevity is greeting 2017 by undertaking several exciting new endeavors, including this one: a new initiative to blog and chat specifically for the Caregiver audience. It’s almost like a New Year’s Resolution!
As we explore this New Year’s Resolution together, you and I and LUNGevity, we will consider a different topic every month. I will introduce the topic here, on the blog, for your perusal. The following week, LUNGevity and I will host a chat over on Twitter, so that everyone (you, me, your family, your support network, and our entire community of fellow Caregivers) can come together to discuss, vent, learn, and grow.    
After each chat, I’ll review our conversations and post a de-briefing blog post. Where are we? What do we know now that we didn’t before? What do we need? Where can we go from here?
So: it is my great honor to invite you to our inaugural #LCCaregiver Twitter chat of 2017, to be held next week, on Wednesday, February 1st at 8pm EST: “New Year’s Resolutions for Caregivers.”
What do YOU want to say? What are YOU working on in your relationship with yourself as a Caregiver, and in your relationship with your loved one? If you have been a Caregiver for a while, what would you like to improve or change? If you are new to this role, what do you need in order to feel comfortable?
As for me, I’m still working on what that title entails. I think we all are. In fact, that one word means something different for every survivor, every family, every household, every situation. “Caregiver.” Care partner, carer, caretaker?
For me: daughter, friend, and advocate.
Join me as we walk this road together.
I am so excited to learn from you.
Love and thanks,
Danielle

I've seen the star of Bethlehem, very early on Christmas morning.  While peacekeeping in Egypt's Sinai Desert, I would run before daybreak as soldiers are prone to do. Although the desert is quite cold in December, dawn running was a habit hard to break.  I ran the camp perimeter to check the defensive positions and greet soldiers enjoying the banter in three different languages.  Starting in the south perimeter and running counterclockwise, the predawn western sky was dark except for the stars that were so clear, they were painted on the black night sky. Passing along the northern perimeter, the sky lightened and my expectation was the sun starting its rise.  But, no, not that day. Right on the distant horizon was a cosmic anomaly, a false dawn, but a bright shining nevertheless.  I was looking at the star in the east seen by the Three Wise Men as they rode in search of Jesus. I would later learn, it was not a star but a rare conjunction of the planets -- Jupiter, Saturn and Mars -- all rising in the east slightly before being washed out by the rising sun.  I am awestruck by that memory.
Many years later after surviving a years worth of cancer surgery and while waiting the results of my first post-surgical diagnostic scan, my entire family gathered to celebrate Christmas. Mom, dad, four brothers, daughter, and a posse of nieces who overwhelmed my one nephew comprised the gathering.  Despite my manifest uncertainty, we had a joyous time.  I can count on a single hand the times my family gathered.  With two Galli soldiers, someone was always missing on deployment.  But Christmas in 2004 was an assembly formation, and the clan was all present and accounted for.  We celebrated Christmas and my life.  I am awestruck by that memory.
Then started the clammer of lung cancer treatment. In my treatment years after the Christmas 2004 assembly, my life hovered in sadness and despair. I allowed myself to become overwhelmed by uncertainty, indeed I could think of little else. I forget there are only two things certain in the human experience: birth and death.  Everything else is uncertain; outcomes are unpredictable. Treatment was working for I was granted extra life.  There were many opportunities for joy but they were frittered away.  I am awestruck by those memories.
In common with all lung cancer survivors, having been born, I have only one certain human experience yet to deal with -- death.  Its timing is uncertain with or without lung cancer. In my memories of active treatment, I chose to let life pass me by forever losing opportunities for joy.
Today we celebrate a birth, a new beginning.  It was announced by a star. I've seen the star.  Let the joy of this birth be a new beginning for all lung cancer survivors.  Let us live and find joy in the life we have and be awestruck by the memories of life well lived.
Stay the course. 

After losing my mother to lung cancer in 2010, I had been looking for ways to help raise awareness for the disease and educate people that lung cancer is not just a “smoker’s disease.” My mother's efforts at raising awareness were very important to her and I wanted to honor her life and efforts by continuing that community outreach.
After participating in Breathe Deep Nashville in 2012, I indicated in a post-race survey that I would be interested in helping out the following year. One of the coordinators reached out to me and asked if I would be willing to join the planning committee and I’ve been involved ever since. This past November was my 4th Breathe Deep Nashville to help plan.
We usually start working on our November event in March or April, so there is obviously a lot that goes into putting together an event like this. The reward for me after all that is honoring the same group of survivors year after year knowing that we are helping to fund a Foundation that supports them in ways no other lung cancer focused organization does. We are lengthening lives through early detection and focused therapies. We are providing survivors and their caregivers with the support and resources they need. We are making a difference.
We are very fortunate in Nashville to have an amazing group of doctors at the Vanderbilt-Ingram Cancer Center working on research and treatments to help end this disease.  I choose to continue volunteering my time for the LUNGevity Foundation because some of the funds we raise come directly back to Nashville. Dr. Jonathan Lehman was a recipient of the LUNGevity Career Development Award in 2016. Through that grant I can see our fundraising efforts impacting his amazing research.
I hope our fundraising efforts will help us to realize a world where no one dies from lung cancer: a world where no one has to lose their mother too early like I did.
 

Ryan is pictured sixth from the left. The theme of Breathe Deep Nashville is "Stache and Lash" so participants grow or wear fake mustaches and false eyelashes to add creativity and laughter to event day!