PaulaC reacted to Susan Cornett for a blog entry, Ready for yet another new normal
I haven't been on here much in the last few months, maybe a year. Work kept me much busier than usual but I *think* that is going to finally level out now that we've hired a new director and a couple of additional consultants. I also find it more difficult to break away from my work when my daily commute is now just a walk down the hall. I'm fortunate - and I know it - because I've been able to continue working without interruption. My employer has offices in CA, FL, NJ, OH, and TX and all of our offices were closed through May. They continue to encourage us to stay home through June and to come back at our new pace.
Now I have to figure out what this new "new normal" looks like for me. When do I return to the office? Should I return? When can I go see my parents? I know that we don't have a crystal ball but I'd love to have an idea of what's next. I take an annual beach trip with my girlfriends in September but I'm beginning to think that won't happen this year. Two of my friends have jobs that require them to interact with people all day. Even if I drive to our destination, they will all be coming off an airplane and possibly exposing me. I know the beach will still be there next year but this is one of those trips that I look forward to all year.
I see Super Doc in a couple of weeks and Super Pulmonologist in July. Hopefully they'll have some thoughts on all of this. Until then, I'll continue to stay at home. Ugh.
Please stay well, friends.
PaulaC reacted to Rower Michelle for a blog entry, Managing Health Insurance Mayhem
Blog Entry is the Teamwork of both Michelle and Tom Gali:
After receiving a lung cancer diagnosis, the last issue, one would expect is problems with health insurance. While it’s unusual to have a claim fully denied, delays that effect diagnostics or treatment are quite common. Here are my 10 tips for dealing with health insurance problems.
1. Get your companies Human Resources staff engaged. Find out who has responsibility for claim payment. If it’s the employer, then they are self-insured and typically have an insurance advocate to fight the battles on your behalf. Get them in the fight. If the health insurance company pays the claim, expect difficulty in authorization and payment. Read your policy about appeals. Every determination that denies or limits care can be appealed. For example, it’s possible to have a non-network provider paid at the in-network rates for a specialty physician. Be assertive, do not take the first “no”. Appeal, appeal and appeal again!
2. Realize each state has an office that regulates insurance. Find out their email address and provide copies of each claim to the office for “information and action as appropriate.” If you need them to act, they will have a ready record of your case on file.
3. Schedule a face to facemeeting with cancer provider’s financial team.Understand how they process insurance claim submittals. Who does what to whom and who is in charge. Get names, phone numbers and email addresses for key people in the claims department. Sometimes providers have a nurse who manages pre-certification requests. Get to know this nurse. Call or email this nurse first if insurance does not pre-approve a diagnostic or procedure. Insurance companies have definitive rules about receiving medical records. Sometimes the lack of a record becomes the log-jam.
4. Get to know the healthcare provider’s patient advocate.It’s important to establish a relationship with this office. They know how to work the health system bureaucracy.
5.Don’t accept “I’m waiting for a call back” as an answer.You will need to be assertive as the squeaky wheel gets the grease. Use a “five-why” response technique. Ask “why” the wait, then follow with another “why” question and another and so on. Provider or insurance company bureaucracy is their problem, not yours. You are paying for it to work efficiently. When it does not, they owe you and answer as to why not.
6. Do not sign any documents at the health system requesting foran “advance or estimated payment” until the insurance issues have been sorted out. Lung cancer treatment is expensive, you do not want to be on the financial hook for treatment that the insurance company is supposed to pay for as part of the benefit design. Sometimes there is a “step therapy” or pharmacy formulary requiring a treatment regimen be tried first. Step therapy can also be appealed through a “peer to peer” conversation with your doctor.
7. Create a log and document everything. When discussing your claim with an insurance company record everything. Record the claim number, date of service, date of claim, time of your telephone conversation and first and last name of each person you speak with. You may not actually be speaking to a member of the insurance company, but one of their “specialty care” vendors. It’s important to know who all the players are. Sometimes vendors do not follow the insurance company rules.
8. Ask the insurance company to assign a medical case manager. This is typically a nurse that can help navigate the health insurance system. Insurance companies often have free phone resources for cancer patients such as mental health counselors, dietitians and physical therapists. Find out what services are available since they are not typically advertised in benefit brochures.
9. Pay attention to your mail. You’ll soon receive a deluge of Explanation of Benefits (EOB) forms; they are all different and are confusing. Put someone in charge managing your EOBs. Create a log recording the date of treatment, the provider, the claim number, amount paid and amount denied. Read and understand the numeric codes explaining reasons for payment or denial. Sometimes, insurance will issue a “partial benefit” payment or apply financial penalties. This information is usually buried on the EOB. Do not pay any provider bills until the EOB has been received. Hospital billing errors are frequent.
10. Stay calm. Every problem has a solution. When discussing your problem and you get a techno-speak response, ask for a plain English explanation. Be ready to interrupt (it’s not rude if you don’t understand!) Save your energy for getting well.
PaulaC reacted to KatieB for a blog entry, You are not always your own best advocate
Last week I took a local lung cancer patient and long time friend "J" to get his scans. This will be a very abbreviated account of what happened.
Even though we are only an hour apart, I haven't seen "J" in a couple of years. He has an incredible story of being dx in his 30s and some amazing heroic efforts when into saving his life. He's even been in the news and media. Since that time 10 or more years ago, he's struggled to live and battled a few recurrences.
They "think" he had a recurrence at the end of last year. Several bronchoscopies yielded no detectable mutations and caused several complications for him. He has lost a significant amount of weight (6'1 and 140 pounds) and he hasn't been able to stop coughing.
His dr scheduled a PET scan. Because "J" could no longer drive, he asked me if I could take him to the testing facility.
I could not believe what I saw. He was SO thin and his speech as a little slurred. He looked glassy-eyed. The nurse had a hard time accessing a vein.
Because he couldn't hold a conversation or drive himself- I borrowed a wheelchair from the testing facility. I filled out his paperwork- dug into his wallet for his ID and medicare card. He has been on oxygen and the machine that the company shipped to him was faulty. When he called them they said they could come in 2 days. TWO DAYS? I drove him to a pharmacy that sold oxygen and had it fixed.
The entire time I kept thinking...what would have happened if I could not have come today? What would have happened if I wasn't here? He would have tried to drive himself. He would have been in serious trouble. He would have been out of oxygen and maybe in an auto accident.
The PET nurse couldn't do his infusion because his blood sugar levels were frighteningly high- even though he said he hadn't eaten in about a week due to no appetite.
I just felt like things were going sideways. I asked him to call his oncologist. He spoke with the nurse. He asked her if she would order some fluid because he has been confused and weak. She said no. "Just drink extra water and mix in some gatorade." He hung up and looked defeated. He told me that the nurse said no. He didn't have pain meds. He didn't have medication to help with the cachexia, he didn't have medicine to help with his cough...he didn't have a working oxygen machine. Now this nurse was telling him he couldn't have a bag of fluids.
WHAT? ANYONE can go to the ER. "I'm taking you to the ER for fluids!"
So off we went. I took him straight to the ER and he didn't argue.
Long story a bit shorter- he ended up being admitted for some serious issues. They transferred him from one location to another one downtown. He got his fluids. The last time I saw him he was eating his lunch in his hospital room.
He isn't out of the woods- not by a long shot. But he is a better than when we started.
Why am I sharing this story? Because "J" is college educated. He has been in the lung cancer space almost a dozen years. He understands the lingo and knows how to be an advocate.
But what happens when you are dehydrated, confused, malnourished, and in extreme pain? How can you advocate for yourself?
If it's ever possible, please have someone with you- especially when you are feeling bad.
You are not always your own best advocate
PaulaC reacted to Susan Cornett for a blog entry, There are days....
Most days, the cancer is buried somewhere in my thoughts, my work, my hobbies - not at the surface. But there are days when it hits me right between the eyes. Cancer. How the hell did I get here? Is this really my life?
Wondering if anyone else has experienced this.
PaulaC reacted to Tom Galli for a blog entry, Cursin' On a Sunday Afternoon....
We are "locked and loaded" for our fifth Transatlantic cruise since I was diagnosed with lung cancer. This Sunday, we depart from Ft. Lauderdale and fifteen leisurely pamper-filled days later, arrive in Southampton, England. Along the voyage, we'll visit Bermuda (a first), the Azores (an other first), Lisbon (been there), Bilbao, Spain (a first), and Le Harve, France (been there). And best of all -- no jet lag! We are serious cruisers and are thrilled to cross the pond in a brand new ship (Celebrity Edge christened in Dec 2018).
Once we arrive in Southampton, we'll pick up a rent-a-car and proceed to get lost driving on the wrong side of the road as we explore England's picturesque Cotswalds region. We really do love getting lost in countries where we can almost understand the language! Then, after a week of land touring, we fly back home to usher in our summer.
Vacations are important for everyone; they are vital for lung cancer survivors. I find I need about 7 days of state change that removes me from day-to-day life and stress. On the eight day, I float in a mental sea of serenity and on this trip, I do hope for calm seas throughout our voyage.
Stay the course...we will!
PaulaC reacted to LaurenH for a blog entry, The Long Road Ahead: Garth Atchley (Part 2 of 2)
Facing a lung cancer diagnosis changes a person’s perspective about what matters in life and what doesn’t. Being diagnosed with cancer makes you put absolutely everything else to the side, or totally out of mind. You have the chance to let back in only the things that really matter back into your conscious mind. If you can do that, and spend more time focusing on things that really matter in the present moment, you will have completely changed and improved your mind and your life. I still get caught up in feeling anxious or scared about what might happen in the future and the negative impact it could have on my family, especially my wife and daughters. What’s helped me has been to realize that they are thoughts – they don’t have a physical presence anywhere and if you observe them but don’t chase after them, they go away.
If I could give advice to someone newly diagnosed, I’d probably want to say a few things.
1. Slow down. Information is going to be coming at you really fast and it can be overwhelming, especially with the internet making everything move at hyper speed. Take your time to digest what’s out there in terms of treatment options, support systems, heavy medical information, etc.
2. Get yourself into a respected cancer center as soon as possible. Find an oncologist that you trust and have a good relationship with, and then TRUST that doctor.
3. Take everything, except what your oncologist tells you to your face, with a grain of salt. There is a ton of real, semi-bogus and totally bogus information out there about magical cures and treatments. Ask your doctor about all of them but, in the end, do what he or she advises.
4. Take a step back, look at the road ahead as objectively as you can and try to be practical. It is the “C” word but, after all, it’s an illness not a curse or a death sentence. Come up with a treatment plan together with your doctor, follow that plan and do what you need to do in order to stay healthy
5. Don’t give cancer more power than it already has by thinking you can’t face it and just giving up. You can face it. Maybe not today, or all the time, but eventually and most of the time you can.
Lung cancer is just the same as any other kind of cancer. It will take the people you love just as heartlessly as any other form of the disease. It’s really good at taking people away; men and women, smokers and non-smokers, old and young, any race and origin. In fact, it’s better at that than most other cancers. We could all get cancer, and none of us would deserve it. We should fight it with research funding, trials, promoting new and existing treatments, by helping people pay for treatment, and everything else at our disposal. Not giving lung cancer the fight it deserves leaves us all that much more powerless to stop it from taking away someone we love.
PaulaC reacted to LaurenH for a blog entry, Jim Pitts
In 2013 started with pneumonia but wasn't getting over it, Dr. wouldn't give up something just not right he kept saying. Sent me to a pulmonary specialist who found a spot on my right lung. Immediately set up oncologist, surgeon & hospital within 7 days I was laying in the recovery room with minus -one lung. Come through with flying colors, home within 3 days, thought to myself piece of cake! Yeah wrong answer, started chemo 3 weeks later and within 24 hrs I was back in hospital dehydrated & sicker than a dog! Not going to sugarcoat it the next 4 months was hell! After that I refused radiation, oncologist wasn't happy, I didn't care. As of October 20 it has been 5 years & I was stage III B so don't believe the statistics, just never give up! and fight!
PaulaC reacted to LaurenH for a blog entry, Diane Milley
My story begins in May of 2013. I am a high school special education teacher and for weeks I had a nagging but dry cough, I wasn't worried about it at all as I was running 3 miles a day, just completed a 5k road race and was very rarely sick. I finally saw my primary care physician who put me on a Z-pack and I went back to my normal life. A few weeks later since the cough had not gone away, I went back to my doctor who gave me a prescription chest x-ray, which I immediately threw on the passenger side of my car and forgot about it. Fast forward 2 weeks later, on a whim I was passing by the x-ray facility and decided to run in and get and a chest x-ray. The next day my doctor called and said he saw something on my lungs that he didn't like and was pretty sure it was cancer. A few days later a bronchoscope was done, and as I was waking up from it I heard a doctor use the word malignant and I knew he was talking about me! Never have I been so scared, I actually made them show me the name of the person on the results, thinking this is a mistake. Non-smoker, 58 year old healthy individual, never gave a thought to lung cancer. It is now 2019 and I have seen targeted therapy, chemo therapy, have had 2 surgeries. I have been on immunotherapy for 2 1/2 years, which has kept me stable. I think maybe the key to success is exercising religiously and making the body stronger for each day that follows. With exercise comes a strong mental attitude… two winning combinations!
PaulaC reacted to Tom Galli for a blog entry, A Picture is Worth 15 Years
I'm the guy who paints a toenail for every year I live beyond my February 4, 2004 diagnosis day. This year our toes are LUNGevity Blue to honor the foundation that is dedicated to changing outcomes for people with lung cancer through research, education and support.
There are many people who've been instrumental in my survival and making a life after; none are more important than my loving wife -- Martha Galli. If I can live, so can you!
Stay the course.
PaulaC reacted to DanielleP for a blog entry, The Pivot
“You know, I heard that green tea/apricot pits/jogging/apple cider vinegar/kale/broccoli/mustard greens/fresh avocados/yoga/this miracle powder/oil/salve/etc., etc., etc. will cure your mom’s cancer. You really need to try it. It worked for my cousin’s friend’s stepmom’s brother. Let me get you the information!”
If you have ever had a loved one with cancer, you’ve heard these offers. You know exactly how they sound. The personal heroism of a friend or neighbor or acquaintance or coworker, offered bravely to your face, can feel so affrontive and offensive. This is especially true when medical treatment plans are not working; when your loved one is especially vulnerable for any number of emotional or physical reasons; or—
wait for it—
when the person offering the miracle cure is otherwise uninterested, uninvolved, and/or unhelpful in the actual caregiving of the patient.
There. I said it. Do not come up to me offering miracles, period. I don’t have the energy to explain to you that, while broccoli is great and we should all definitely get more exercise, they alone are not going to abate the tumors in my mom’s lungs. I don’t have the emotional wherewithal to be polite to you while staring in disbelief that you yourself have fallen victim to believing some scheme.
And if you have not asked if we need anything, or brought us a cake or pie or casserole or loaf of bread in the four years since she’s been diagnosed, then you have an especially low level of credence or gravitas with me in terms of your interest in my mom’s well-being.
If you are a caregiver, you know exactly what I mean. We are on the same page right now. We are all preachers and choirs (or pots and kettles) at once.
But…that doesn’t mean we know what to do about these offers of help. As annoyed or hurt or exhausted as we may be, the fact remains that these are relationships we may need to maintain. Telling folks exactly how we think or feel about their unhelpful “help,” using all the words we want to use, is not exactly conducive to maintaining the relationships. So, we need a coping mechanism. We need a tool.
At some point, off the cuff, in one of my more emotionally raw moments, when faced with one of these offers, I let slip from my mouth: “you know what would actually be helpful?”
And, just as if in a sitcom, I jumped; surprised at my own words; time slowed to a crawl; I turned my head; I looked at my acquaintance, as if in molasses-slow-motion, terrified that she would be offended; and…
She looked right back at me, unaware of my sitcom-terror-moment, and said “what? What do you need? Let me help!”
And my world shifted from a sitcom to a Disney princess movie. Time sped back up, birds chirped, the sun came out, the clouds parted, and music started to play.
Well, that’s how it felt, anyway. Seriously: I was floored. Her genuine interest in helping had been proven, and I realized: she just didn’t know HOW to help, or WHAT to offer, so she had reverted to the only tip/trick/hack that she knew of on the topic.
My point is: as caregivers, we are so consumed by all that we have to do that we cannot imagine anyone in our lives or networks being oblivious to our reality. But, my friends, they are. All of our friends (and relatives and acquaintances and neighbors and coworkers) are understandably consumed by their own realities. When they occasionally can fall out of their own orbits to see what we are up against, it takes a lot of time to catch up with the status of things, let alone to study up on what we might need or not need. This is time that the folks in our networks usually don’t have, my friends. So, if they are aware of some one-size-fits-all grab-and-go panacea, of course that’s what they’re going to offer. These are, after all, unfortunately readily available and highly advertised.
Here’s the point: on that day that the skies cleared and my friend stopped in her tracks to ask what I actually needed, I learned that her heart was in the right place. Her intentions were good, even if ill-informed. And, I would venture to guess, that's the case 9x/10.
And so, the “pivot” was born. This became my tool, and I offer it to you here in hopes that you can make use of it as well.
(If you're a fan of the movie or musical "Legally Blonde," or if you love "Clueless" or "Mean Girls" or anything like that, this can alternatively be referred to as the "bend and snap." Don't ask).
The “pivot” is just the name I give to my blatant usury of the assumed good intentions of the poor soul who offers me snake oil. Here is the script:
Person: “I’m sorry to hear about your mom’s lung cancer. Have you tried making a smoothie from donkey fur? I hear that cures cancer.”
Me: “OH my gosh, thank you, that’s so nice of you to tell me. Hey, ya know, I’m really covered up on Thursday. Can you bring mom some lunch?”
BOOM. Done. Weapon deployed.
(The caveat, of course, is that you have to have a ready-made mental list of assistance that would be useful to you. Frankly, I think this is always good to have, so that you can always respond productively when folks ask what they can do, no matter how they actually ask the question).
Anyway: my favorite part of using the pivot tool?
You will *very quickly* separate the wheat from the chaff. You will immediately be able to gauge whether the person offering the unhelpful help was actually interested in helping, or only being unhelpful after all.
And, at the end of the day, they might actually come through.
PaulaC reacted to Tom Galli for a blog entry, Predicting Doom
I am not a statistics wizard; an engineer, I value the predictive power of statistics. Indeed, if one can precisely control variables, a statistics-based prediction of the future is remarkably accurate. The joy of predicting end strength for a new carbon-nanotube concrete mix design melts the heart of this engineer. But, concrete is a thing with but 4 variables to control. Human beings have perhaps millions of variables, thus predictions about people are vastly more complicated and inaccurate.
Statistically-based predictive power has a foreboding downside. The methodology is used by the medical profession to forecast life after diagnosis with late-stage lung cancer. Unfortunately, I have first-hand experience once predicted with but 6 months of remaining life nearly 13 years ago! My doom was forecasted with high statistical confidence and for a while, I believed it.
In the dwell time between treatments, I searched for methods used to generate my projection of demise. Each patient’s type, stage, age, ethnicity, race, and date of diagnosis are reported to the National Cancer Institute on diagnosis. Deaths are also reported but not the cause of death. Nothing is captured on complicating health problems like cardio-pulmonary disease, diabetes, or other life-threatening maladies. The predictive data set appeared slim and uncontrolled.
My doom and resulting gloom waned while mindlessly searching web pages for statistical good news. Ammunition in the form of a powerful essay by the noted Harvard biologist Stephen Jay Gould – “The Median Isn’t The Message” – contained: “…leads us to view statistical measures of central tendency [median or mean] wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua.”
This meant the statistician seeks to combine data and express it as a median or mean to predict or explain. I’d forgotten that I was one inaccurate variable in a “world of variation.” One data point used to calculate a central tendency of survival for about 1.4 million Americans diagnosed in 2004. I might be the one holding the right-shifted curve from intersection with the axis of doom.
Gould survived 20-years beyond his late-stage, nearly always fatal, abdominal mesothelioma cancer diagnosis. Ironically, he passed after contracting another form of unrelated cancer. A distinguished scientist, Gould eloquently described the limits of science and statistics by suggesting that “a sanguine personality” might be the best prescription for success against cancer. There is always hope, with high confidence. Listen to his essay here.
Stay the course.
Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU
PaulaC reacted to Tom Galli for a blog entry, A Life Well Lived
A lady with lung cancer passed early this morning. I knew her well. She survived two surgeries claiming a lung, radiation, and many many infusions of chemotherapy. Indeed, her disease was being treated like diabetes or heart disease — a chronic but controlled condition.
Lung cancer did not claim her and death is not a celebratory event, but living a full and meaningful life despite lung cancer is indeed praiseworthy. In characterizing the lady’s life, full and meaningful are an enormous understatement.
In recalling our years together, I am struck by how few times we talked about lung cancer. We shared a disease but talked about stock shows, cars, fashion, movies, politics, family, travel, ranching, tomatoes, and friends. That she would not achieve NED didn’t bother her a bit. “I’ve got things to do and doing nothing ain’t gonna happen!”
I will morn her passing. I will also strive to emulate her lifestyle.
Stay the course.
PaulaC reacted to LaurenH for a blog entry, Don Fredal
I was diagnosed with Stage IV lung cancer in September 2014. Like many people, my diagnosis came as a huge surprise to me and my family. A friend told us about the Breathe Deep Kansas City Walk that was happening in our area. We called our team The Village People because we like to say, “It takes a village” to fight this thing. The Breathe Deep walks provide an opportunity to raise awareness and money in your own community. It’s very powerful.
I attended my first National HOPE Summit in Washington, D.C. in 2015. Lung cancer is so isolating and overwhelming. Then you get there and meet other survivors and caregivers and experts. I feel like I always leave HOPE Summit with 150 new friends and then I don’t feel so lonely when I get home.
The next year my wife and I attended the 2016 Hope Summit together, she finally understood how these friends I had been talking about for the last year could be so intertwined with my health and healing. We made even more friends and keep in touch all year long through social media and other events around the country.
Once you get to HOPE Summit, it’s so empowering that you want to get involved. I found out about the LifeLine Support Partner program at HOPE Summit. LifeLine is nice because you can work remotely and there’s an opportunity to give back. My mentor, Matt Ellefson, is one of those people who LF relies on to have multiple mentees and he was very inspirational for me because of our similarities and what we’ve been through. It was a very good fit.
LUNGevity tries to match people based on age, gender, diagnosis and geographic location. It’s always felt very comfortable. I’ve had mentees assigned to me and we usually have a really good talk and maybe hear from them once or twice and that’s all they need at that time. We talk on an as needed basis. Hopefully, I’m encouraging people depending on where they are. A lot of the time, the person is newly diagnosed and it’s very fresh with them. As a mentor, you have to put yourself back in that frame of mind. It’s important to remember that you’re not there to fix their situation. You’re there to listen to what they need and let the conversation evolve.
The most rewarding thing about being a volunteer is being able to help someone else by sharing my experiences and the ups and downs that I’ve had. If I give any advice it’s always to find a specialist who is an expert when it comes to your diagnosis type or mutation. It’s so important to be very confident in your medical team. Don’t be afraid to get a second opinion. If your doctor isn’t jiving with you, keep looking. It just feels good to help somebody through this because as we all say, it’s really hard for other people who haven’t gone through it to understand.
When I was diagnosed, I was given 9-18 months. I’m coming up on 3 years and 11 months and my wife and I are going out to Los Angeles next month for the Stand Up for Cancer telecast on my 4th Cancerversary. I hope that my efforts as a LifeLine volunteer will inspire the people I mentor to do the same for others. I’m a big believer in paying it forward. It’s a big world and there are a lot of people affected by this disease.
PaulaC reacted to Susan Cornett for a blog entry, Another recurrence, another call to Mom and Dad
I've said it before and I'll say it again: cancer can be as hard, if not harder, on the loved ones than the patients. Our family is very close - I don't have any siblings and my husband and I don't have children. Our family unit is small. After 2.5 years, my husband and I have a process. He goes with me to all of my scan result appointments. As soon as Super Doc gives us the results, Neal steps out and texts or calls my parents with the updates. I always want to be with them if we have to give them bad news. My parents live 4 hours away; otherwise, I think they'd crowd into the exam room with us.
Although we had to give them bad news a couple of weeks ago, we actually had something in our favor. A lifelong friend of mine was visiting with them on the way to take her daughter to tour a college. She was able to keep my parents somewhat balanced this time. I'd been preparing them for the results - figured this was coming. But no one wants to have to call their parents and tell them the cancer is back. Stupid cancer.
PaulaC reacted to Tom Galli for a blog entry, Know The Enemy -- The Cure Scam Artist
The modern world is full of scams, lies, untruths, and junk science. Indeed, for a lung cancer survivor or caregiver, finding truth about lung cancer in our Internet world of mis-information is extremely difficult. How do we know what to believe? Perhaps you've heard of Belle Gibson, the health food purveyor and wellness guru, who spent years convincing us she had a cure for cancer. Don't know the story? Read it here. How did we buy into Gibson's claims? How do we avoid another scam trap? Here is my list for sniffing out a phony lung cancer cure scam.
1. Ignore anyone who broadcast-messages a cure for cancer. No one discovering a cure to cancer will announce it on a daytime TV show, or a TV infomercial. The person discussing the "cure" will more likely act and talk like a nerdy scientist rather than a TV or movie personality. The announcement language will be hyper-technical, interspersed with statistical terms comparing this to that under a given circumstance. The announcement could be televised but the audience will be filled with scientists and physicians. But before the telecast, there will be a series of journal articles discussing and critiquing the findings. The announcement will likely follow the form and tenor of the CERN Higgs Boson "god particle" discovery. Watch that coverage and mentally compare it to an episode of The Chew. If you don't hear words like "the combined difference of five standard deviations", you are listening to a hoax.
2. The cure announcement won't be a sales pitch. Think of the biggest news event you've ever seen, say the announcement of 9-11. Discovery of a cure to cancer will be bigger -- much, much bigger! It will be a world-wide-headline-news story and will be announced by a government. Following the announcement, there won't be a 1-800 number or world wide web address to buy the cure! It won't be a pharmaceutical company announcement. Yes, new drugs showing progression free survival improvement are announced in pharmaceutical company news releases, but these are clinical trial results for a new therapy, not a "cure" announcement. And recall what a new lung cancer treatment drug commercial looks and sounds like. There are all these legal disclaimers, side-effect disclosures, and restrictions on taking the drug. A lung cancer or any cancer cure won't be a commercial advertisement of a drug or treatment. It will be a celebration and the biggest news event of your lifetime!
3. Be very wary of a dietary supplement touted as a cure. Cancer is a disease of the human genome. Each of us has the genetic predisposition to have every kind and type of cancer ever discovered. Science understands the genetic nature of the disease and a changes in diet or taking a dietary supplement does not change or effect our genetic make-up. A change in diet to lose weight, avoid diabetes, or improve cardiovascular health is a good thing, but no one claims taking a dietary supplement or a change in diet cures diabetes, heart disease or cancer, except scam artists. A healthy diet has many benefits; curing cancer is not one of them.
4. Self-promoters touting heroic cancer survival stories are scammers. If you want to read and believe heroic survival stories, they are in forums such as this one. Our survival stories sell hope; they don't sell product. No one here is seeking fame for surviving lung cancer. Certainly, no one here is getting rich surviving this awful disease. Real lung cancer patients know that cancer sucks, treatment sucks, scans suck, the whole process sucks. No one here sits for a TV interview claiming to beat lung cancer by taking this, that or the other thing. While the first rule to being successful in sales is to sell yourself, we are not selling anything.
5. Social media promotion is a scam in the making. Who is going to offer a product or treatment that cures cancer on social media -- a scam artist! Social media likes and shares are not scientific peer reviews. The Super Bowl Justin Timberlake selfie boy achieved overnight fame, but for what? Perhaps he could use that fame to sell tee shirts, but a lung cancer cure? Seriously? And be wary of news outlets who publicize these miracle cure announcements. TV and newspapers sell scam promoters also. They publicize sensationalism so a 30 second report on your 5 o'clock news of a wellness guru who discovered a cancer cure is what -- a scam! Do you know of TV reporters with a PhDs in Microbiology or Pharmacology? Where do they get the competency to evaluate scientific claims? Here's the point; they don't care about scientific authenticity; they want to generate sensationalism. Media sensationalism sells media, not cancer cures. Social media clicks sell social media, not cancer treatments.
Lung cancer is a horrible disease. Sadly, there are horrible people in this world who take advantage of our misfortune to rob us of time and money. Only our vigilance and common sense can protect us. Remember, there is no such thing as a cancer cure, yet! When one is announced, the world will know and celebrate.
Stay the course.
PaulaC reacted to Tom Galli for a blog entry, Ninety Percent Mental
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.”
Stay the course.
PaulaC reacted to Tom Galli for a blog entry, Lung Cancer's Painful Quadratic Equation
Early on, we learn Algebraic equations with only one solution. Then we encounter equations with two solutions -- Quadratic Equations. Consider: x2 + 3x – 4 = 0. This has two solutions: x = -4 or x = 1. Both are correct; one is negative and one is positive. Algebra students get very comfortable with solutions having a positive and negative outcome -- lung cancer survivors are less comfortable!
The positive outcome for lung cancer is extended life. But like quadratic equations, there can be negative outcomes that are less desirable. Mine is chronic pain. So to the question, how does one fit a negative outcome into the positive? No, Algebra does not help. But, for those in treatment or surviving after treatment, preparing for life with negative outcomes is helpful.
My chronic pain has two primary and many secondary causes. I have peripheral neuropathy -- numbness in fingers and toes including a burning sensation in toes and pain in the foot joints. It is a common Taxol side effect, and we informally call it “taxol toes.” Also, I have nerve damage caused by quite a few surgeries to my right chest that is chronically painful. How do I fit these negative outcomes into life?
My strategy is to tolerate chronic pain until bedtime. Then something must be done or I won’t sleep. I’ve cycled through over-the-counter, then prescribed sleep medications. Both worked for a while. Doc found a study suggesting a therapeutic effect for Xanax on chronic pain. He prescribed a 0.5mg dose at bedtime, allowing an increase to a total of 1.5mg. This relaxes me and makes me drowsy. It works about 6-in-10 nights.
A secondary cause sometimes drives pain above chronic levels. These are: chemotherapy induced joint pain; muscle cramps; stress, anger and excitement; sneezing and coughing; and flying on aircraft. The joint pain, an in-treatment side effect, required narcotic medication in every case to relieve. Reliance on narcotics has two downsides: an inability to think and function normally the next day and constipation. However, other secondary causes occasionally require narcotic medication to achieve relief. Because of the downside to narcotics, we’ve developed a couple of unique pain abatement procedures that may be of interest.
Our first strategy is to apply prescribed lidocaine transdermal patches to incision scars and or feet in combination with Xanax. Since lidocaine dosage is limited to 2 patches, my wife cuts them into strips and fits them along my incision scars, and applies them to my feet. A pair of tight fitting socks are stretched over my feet to keep them in place. When the offending pain spike is either in my chest or feet, a full 2-patch application is used. The patches are applied in time to allow the Xanax to work and I sleep, hopefully.
The next works only for feet and is a back-up strategy if lidocaine fails. My wife uses an ace bandage to wrap reusable frozen Blue Ice packs to the bottom of each foot. The cold is very uncomfortable for a couple of minutes, but in a short time my feet are numb and if I’m lucky, I sleep.
Muscle cramping is a long term side effect from chemotherapy. It stems from low Magnesium blood levels. I take at least 500 mg of Magnesium supplement per day. My oncologist would rather I take 1000 mg, but I suffer digestive system revolt. I learned that almonds provide 75 mg of Magnesium per ounce so I snack in lieu of a second pill. Regardless, I still experience one to two cramping events per day. When they occur anywhere near my feet or chest, chronic pain soars. There is however, no remedy for cramps. The worst occur in the middle of the night and wake me up.
Archimedes, the ancient Greek hydrologist, provided an explanation for why immersing up to my neck in a swimming pool eases incision pain. The upward buoyant force of the water offsets the gravitational pull on chest incisions thus minimizing pain. Almost every day our community pool is open, I spend hours in the water. This does not eliminate pain but reduces it noticeably. On leaving the pool, the normal level returns but it is very therapeutic. Lying in a bathroom tub, unfortunately, does not work because there is not enough water for complete submersion. A hot tub works fine, but there is no difference in pain relief from water temperature.
Flying in a commercial airliner also spurs chronic incision pain. Most airlines pressurize their cabin between 6,000 and 8,000 feet pressure altitude. This lower-than-sea-level pressure expands my chest cavity increasing incision pain. All commercial flights hurt but long flights are very painful often requiring a dose of narcotic medication in flight. Not flying is the only remedy. Those having thoracic surgery have long complained of incision pain after commercial air flights and cabin pressure is the cause.
Another secondary cause is extensive coughing and sneezing. Sneezing is particularly bad when it is a “surprise sneeze”. During the worst pollen events, I stay indoors and I try and avoid school age children to keep the chest colds in check, especially when school is in session. The last secondary cause I have the most control over: stress, anger and excitement. Admittedly, excitement is the easiest to control except when the Dallas Cowboys are playing my beloved Philadelphia Eagles. These two games a year are indeed stressful and since I live among cowboys, someone is going to be angry over the outcome.
My wife reminds me when I complain too much that I am lucky to be alive. What’s a little pain given the alternative. She’s right. Doc reminds me to avoid scheduling things in the morning so I can sleep-in late if pain interferes. He’s right. Football season is right around the corner and it is a good thing games are scheduled in the afternoon and evening.
Now if the Eagles start winning, everything will be fine!
Stay the course.
PaulaC reacted to Tom Galli for a blog entry, Free and Invaluable
Using the words free and invaluable to characterize lung cancer medical care is a hard sell. I’ve seen so many scams promising this, that, and the other thing that deliver nothing more than a money pit. So I was indeed skeptical when Dr. David S. Schrump introduced his National Cancer Institute Intramural cancer treatment program, at our April 2018 LUNGevity Summit, with the words “no cost to patients, including travel and lodging.”
Why didn’t I know about this resource? I’ve encountered so many newly diagnosed folks who had no or inadequate insurance and who had to forgo treatment because of financial concerns. Yet, there is a sophisticated, taxpayer funded, medical system that designs “unique to patient” protocols including surgery, radiation, chemotherapy, and newly emerging treatments. And, it is free! All patients at the NIH are on investigational protocols, including those who are receiving standard care, so that their tumor tissues, blood, etc can be used to develop new cancer therapies. Once a patient is enrolled onto a protocol, care is provided at no cost. There is no third party billing, deductables, etc.
Then on the second summit day, I learned Dr. Schrump’s Surgical Oncology Team is developing unique vaccine-like immunotherapies using tumor material surgically removed from a patient — a tailored and individualized immunotherapy agent. In an ongoing vaccine study, Dr. Schrump’s team observed immune responses to lung cancer-associated proteins in 60% of patients; several responders have had unusually prolonged disease free-survivals, supporting further evaluation of the vaccine. Dr. Schrump hopes that personalized vaccines may one day be an alternative to adjuvant or post-surgical chemotherapy, the current standard of care. Much more work needs to be done to determine to feasibility and potential efficacy of this approach.
Moreover, they are using aerosol delivery methods as alternatives to IV or oral administered drugs to increase the uptake of drugs into lung cancer cells, and “prime” them for attack by the immune system. Indeed, his presentation was filled with very innovative methods of attacking lung cancer with promising results.
If you are an American and don’t have the financial resources for lung cancer treatment or if your medical team has run out of treatment ideas, contact the National Cancer Institute. You don’t need a physician referral. Email [email protected], introduce yourself and your diagnosis stage and type and put your phone number in the email. Free and invaluable may indeed be words appropriate to use in concert with lung cancer treatment.
PaulaC reacted to LaurenH for a blog entry, Ashley Rickles
“I’m sorry, sweetheart these are tumors in your lungs and a form of lung cancer”.
These were the words spoken to a vibrant, healthy 36-year-old female on October 19, 2017, by the thoracic surgeon. I knew that things were probably not good when he came in and asked if I was alone. Unfortunately, I was alone. Looking back, that day seems like a blur. I remember the ladies at the checkout desk asking how I was doing as they ask so many patients all day long. It’s mere customer service, right? I never made eye contact and mustered enough energy to say the word “fine”. I was far from fine, but I just wanted to get out of there.
I never cried in the doctor’s office that day, but walking down that winding hallway and through the parking lot felt like I was carrying cinder blocks for shoes around my feet. The minute I got in my car and closed the door was the moment that I completely lost myself. I have cancer. I am going to die. My parents are going to have to bury their only child. My world felt like it had crashed.
The days and weeks ahead were just amazing considering my new circumstances. People loved on me like I had never been loved on before. I received cards and texts and all sorts of support, but a part of me wanted to tell them that I was still the same person and I appreciated the cards of support, but that I wasn’t dead yet. Please hold the flowers too.
My lung cancer diagnosis was a complete shock as it is to so many. However, I was asymptomatic and cancer was the last thing on my brain. I was hospitalized for a Bartholin Cyst. I had my yearly exam already scheduled with my OB/GYN and this exam was far from routine. I explained to the nurse that I was in pain and was running temperatures between 101-103⁰. I visited the local emergency room twice to attempt to acquire some relief and was incorrectly diagnosed. My OB/GYN admitted me to get antibiotics started quickly and mentioned a minor surgery, but before I went to the hospital, he wanted me to have a CT of my abdomen to identify the cyst prior to any procedure.
Thankfully, the tech caught just the lower portion of my lungs on that scan and the radiologist noted lung nodules. When I went back to my OB/GYN for my check up, he mentioned the lung nodules and ordered a full chest scan. He informed me that people had benign nodules and they could be there from my severe infection, but that he wanted to just make sure that it wasn’t anything.
The next day he called me to inform that the nodules were still there and he would like for me to see a Pulmonary Specialist. I agreed and the Pulmonary Specialist was very concerned about the number of nodules in my lungs which were over 100 scattered across both lungs. He conducted a bronchoscope and a needle biopsy for which both were non-diagnostic and I was then punted to the Thoracic Surgeon. The Thoracic Surgeon removed three wedge sections and sent the pathology off to Mayo Clinic in Arizona.
After further molecular testing, my oncologist educated me on the different mutations and the path of treatment that would be taken for each of them. It was determined that I was Stage IV due to both lungs being involved and was positive for T790M. I began Tagrisso as a first line on November 11, 2017. After 6 months on this drug, my last scans read “barely perceptible”. I will keep taking Tagrisso until resistance occurs and hopefully there will be another inhibitor to take its place.
When I was first diagnosed, I would literally wake up in the night in a panic. I couldn’t sleep, eat or function normally. I started browsing the internet for support groups and pages as well as social media. I found the LUNGevity private patient groups on Facebook and asked to be added to every single one of them. I began telling my story and people started responding to me and sharing their stories. Strangers were sending me encouraging private messages. I saw people living and thriving with an incurable, life-shortening disease. I found hope. I started sleeping and not crying so much. Finding those support groups really made the initial journey a bit easier. Although we were strangers, we were brought together by a common bond. I’ve since been able to meet some of those people in person through the HOPE Summit and my “family” has grown by leaps and bounds. I would have never met these incredible people without lung cancer.
Receiving a lung cancer diagnosis is not something any of us would have willingly signed up for, but I am thankful that I was able to find out before it spread all over my body and treatment options were expunged. I am also thankful for the perspective shift. I now know what it means to live each day with intent. The days of merely existing are over. It’s time to live and love life to the fullest because I now understand the value of each day that I am given.
PaulaC reacted to Tom Galli for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor
MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
Step 1 – Invest in sophisticated diagnosics before diagnosis
If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
Step 2 – Choose a good general practitioner
Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
Step 3 – Ensure your oncologist is a physician
A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
Step 4 – Learn about your disease
At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
Step 5 – Acquire a sanguine attitude quickly
Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
Step 6 – Any port in a storm
There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
Step 7 – Don’t believe the miracle cure
The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
Step 8 – Don’t try to tough it out
I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a physiologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
Step 9 – Become a calendar maniac
If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
Step 10 – Choose to live
When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
Stay the course.
PaulaC reacted to Tom Galli for a blog entry, Social Security Disability by Disapproval
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.
PaulaC reacted to Susan Cornett for a blog entry, Random thoughts
I'm in the middle of my quarterly scan appointments. While I was waiting for my blood draw yesterday, I noticed a couple that was apparently new to the oncology clinic. The wife is the patient and, when she was called into the lab, her husband got up to walk with her and she told him she was fine, just going for a blood draw. I looked at his face and saw fear and I just wanted to give him a hug. This is the part I hate the most - when we look into our loved ones' eyes and see their fear. I just want to fix everything and I can't; we have so little control over this part of our lives. I have no idea why she was there or what her diagnosis is, but I definitely said a prayer for them last night.
PaulaC reacted to LaurenH for a blog entry, Bill & Heather's Story (Part 1)
My wife, Heather’s lung cancer was discovered by accident. She was having an abdominal CT scan when the doctor noticed a small shadow on her lower right lobe. She subsequently had a chest CT scan. The Thoracic surgeon felt it was pneumonia scar but it was too small for a needle biopsy so he ordered a PET scan.
We went for the PET scan and the radiologist who did the scan also read it and told her immediately that she did not have cancer. (It was not until a couple of years later that I actually read the report which indicated that there had been mild FDG uptake in the upper left quadrant of this spot.) She started having follow-up CT scans every 6 months. On one scan, the report came back that the spot had diminished in size. We were excited because cancer doesn’t shrink but unfortunately not informed enough to know that positioning during the scan can make a difference. She was then moved to an annual CT scan.
Heather had her annual scan in July 2012 and we went to her parent’s cottage at the beach for a couple of weeks. When we returned home there a message on our machine to call the Thoracic surgeon’s office for her appointment. This was a new surgeon as the previous one had retired. She called the office and the receptionist said she was booking her for an appointment to see the surgeon because of the growth in her lung. The receptionist assumed that our family physician had informed us. I immediately called our family physician who was doing rounds in the hospital and asked him what was going on. He didn’t realize that the appointment would be set up so quickly and apologized and we made arrangements to meet at his office. We are fortunate to have such a wonderful family physician who we used as the center for all future appointments and advice.
Heather underwent a wedge resection on Labour Day weekend 2012 to remove her tumor. The tumor tested positive for NSCLC Adenocarcinoma and was scheduled for a lobectomy to remove the bottom lobe of her right lung. This operation was performed on the Canadian Thanksgiving weekend in October, along with a wedge resection of a nodule in her middle lobe and Lymph node sampling from the mediastinum and hilar. She was Stage 3a T2N2M0 with metastasis in three different lymph node stations. All her lymph nodes also had vascular involvement. Her oncologist patted her knee and told her that she had a 15% probability of surviving 5 years. On New Year’s Eve, ending 2012, Heather began 4 rounds of chemo, Cisplatin and Navelbine followed by 25 radiation treatments.
This has been a journey with many ups and downs with a few scares along the way but she is currently stable and enjoying life.
PaulaC reacted to KatieB for a blog entry, Depression in Lung Cancer Patients
It’s normal for someone diagnosed with cancer to experience feelings of sadness, fear, anger and grief. It’s when those feelings prevent you from functioning in your everyday life and you feel emotionally paralyzed in your situation for an extended period of time that you need to seek help.
Cancer patients experience depression two times more than the general population and studies have shown that mental health and social well-being can affect the success of treatment. Those diagnosed with cancer have life plans that are interrupted, a change in physical activity and ability, role changes in relationships, and career, may experience a loss of self-image or sense of self. They also experience fears about the cancer growing within their bodies, anxiety about the success or failure of treatments, worry over their families and caregivers and may fixate on the possibility that their lives will be cut short from their disease.
Those diagnosed with lung cancer have an additional set of issues facing them. Some may experience the stigma associated with the disease and experience anger or guilt, isolation or shame depending on whether or not they had a smoking history and whether or not they feel they are getting adequate medical and emotional support from their local communities.
Lung cancer survivors may also feel outrage, anger and a sense of being forgotten because of lack of public awareness and support of the disease in the media, limited treatment options available for the disease and sparse funding that goes to research the disease.
Depression is more than just the normal feelings of sadness. Depression is when an individual experiences at least one of the following symptoms for more than two weeks:
Feeling sad most of the time Loss of pleasure and interest in activities you used to enjoy Changes in eating and sleeping habits Nervousness Slow physical and mental responses Unexplained tiredness Feeling worthless Feeling guilt for no reason Decreased concentration ability Thoughts of death or suicide Getting help for your depression can help your cancer experience feel less challenging; it may help your relationships with the people around you may give you back some sense of control over certain parts of your life.
Visit the National Cancer Institute for more information on depression in cancer patients and call your doctor if you feel like you may be suffering from depression.
Did you experience depression with your lung cancer diagnosis?
Share your tips on how you dealt with your depression by commenting below.