Tuesday, September 25, 2012

forget you! lung cancer

Since coming out of the closet about my lung cancer diagnosis following surgery in March I find myself sometimes slack jawed in conversation.

I have never had more people tell me that “we all could die in a car accident tomorrow”.

Nor did I realize I knew so many psychic people telling me “don’t worry, you’ll be fine!”

They have no idea how much restraint it takes not to grab throats and shake heads yelling, “I have lung cancer! I worry that is what I do!” … and gee thanks if I was not already worrying about lung cancer now I am freaking out about getting in a car tomorrow!

Deep breaths, they mean well … leave their fate to karma.

Now on the other hand when out and about with my wife, Patti, I may experience the most peculiar phenomena of them all - I do not have lung cancer, at least not in her now.

Dementia like symptoms of Multiple Sclerosis all but erase her memory especially short term. Unless I remind and continue to remind her that I have lung cancer … well, I don’t.

No awkward conversations. No unspoken words. No not talking about the future and such. We just talk as if the past nine months never happened, which at least for her they never did. Focused on the caregiving needs of her physical and cognitive symptoms of MS - it's 'forget you! lung cancer', at least for awhile. 
"It is one of the most beautiful compensations of life that no man can sincerely try to help another without helping himself.” Ralph Waldo Emerson
Patrick Leer
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Friday, September 21, 2012

war on most lethal cancers

The Recalcitrant Cancer Research Act of 2012 - HR 733
Wednesday night the US House of Representatives passed The Recalcitrant Cancer Research Act of 2012 that would target the most lethal cancers, pancreatic and lung cancer. H.R. 733

To me, it’s not just another piece of legislation – it’s personal. My Dad died of pancreatic cancer in 1997; I was diagnosed with lung cancer earlier this year.

Lung Cancer Alliance worked closely with the Pancreatic Cancer Action Network to secure priority status for lung and pancreatic cancers in the legislation which together cause one in every three cancer deaths and whose 5-year survival rates of 15% and 6% respectively have barely moved since the 1972 launch of the ‘War on Cancer’.” Laurie Fenton Ambrose, LCA

Kudos to Representatives Anna G Eshoo (D-CA), Leonard Lance (R-NJ),  Donna Christensen (D-VI) and Frank LoBiondo (R-NJ) sponsors of the legislation and all the bipartisan support.

Today, Houston's MD Anderson Cancer Center announced its "Moon Shots Program," aimed at significantly reducing the number of deaths from a handful of cancers (including lung cancer) by the end of this decade.

Pledging the commitment of money ($3 billion) and resources that typified the race to the moon, The Cancer Center will launch the new war on cancer in February 2013.

I certainly cannot speak for anyone else trying to survive lung cancer 'in the now' especially as I am new to all this only diagnosed 7 months ago but whenever mainstream media gets into a cancer frenzy and mortality and survival rates are just statistics tossed into new stories instead of the people they really are and were, I try to read them with appropriate optimism and enthusiasm for the future but I also feel a bit like I am whistling past the graveyard.

by Patrick Leer
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Tuesday, September 18, 2012

the biggest looser – lung cancer funding

Here I was on a Monday night catching a few minutes of guilty pleasure watching WWE (professional wrestling entertainment) and out struts John Cena adorned in pink breast cancer awareness merchandize available on line at wwe.com.
WWE, John Cena, Susan G Komen for the Cure are teaming up against breast cancer
I shot out of my chair yelling at the screen as if I was live with tens of thousands of other WWE fans, wherever they were broadcasting from, except I’m screaming “WTF! Breast Cancer month is not until October! No fair!!"

When I first went shopping on line after my recovery from lung cancer surgery for something to wear as a badge of honor, I felt lung cancer got the left overs of marketing.  First of all what’s with ‘clear’ or ‘pearl’ as a ribbon color, who picked that?  I go to my first lung cancer 5K and I get recognized with a “survivor” shirt in mucus green, who thought of that? Eventually I had to order my survivor hat from Zazzle instead of any lung cancer organization.

Lung cancer is deadlier to women than breast cancer but gazillions gather to run or march for the less dangerous cancer. What is wrong?

What is John Cena doing promoting merchandize in mid-September for Susan G Komen?

Shouldn’t there be rules of fair play about fundraising? September is 'pediatric cancer month' can’t the pink fundraising bullies wait two weeks. Here I go sounding pre-geezer again but I remember a time that celebrities used to support pediatric cancer with ads for St. Judes.

It’s a damn shame cancer fundraising can’t be shared but that is not the American way.

I also hope it is not about numbers. I mean there are 24 lung cancer organizations. Lincoln observed that "A house divided against itself cannot stand." Hint, hint - maybe less lung cancer organizations would make for a stronger voice. 

Patrick Leer
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Thursday, September 13, 2012

dotting the i's and crossing the t's of lung cancer

While it might sound like a trick question for ‘are you smarter than a 5th grader’, after all there are no i’s or t’s in lung cancer, the reality is that so far surviving lung cancer means I have spent more time reviewing, auditing and haggling over bills than I have recovering.

dotting the i's and crossing the t's of lung cancer
As incredulous as it may seem on average billing ERRORS average 15%-20% across the board. Even more incredulously is apparently no one cares because medical costs are essentially arbitrary; there are no real definable costs. A test or procedure costs X if you have one insurance, costs y if you have another, or potentially even x+y if you have no insurance. Bottom line there is no ‘actual cost’ for a product or service.

How can I discuss line items on bills if I am not prepared with at least lay-knowledge of services, techniques, equipment, etc.
I have had to self-learn radiology, pathology, oncology, and surgical terminology, spending hours to days on line self-learning billing and coding and more.  

I have caught everything from an obvious double billing of a day’s hospitalization for a pneumothorax to billing for X-rays that were not even mine.

Years ago when such things used to surprise me I would record into my day planner how much time I spent on medical billing and insurance related issues caring for my wife with Multiple Sclerosis. 1,000 hours a year was not unusual. That is essentially an additional 125 working days a year ‘unpaid’ spend on phones and paperwork. I did it because I originally wanted to reduce the stress for her of living with MS but later progression of cognitive symptoms left her unable.

Surviving lung cancer for a few months already has shattered those numbers and I’m not caregiving for someone else, I am trying to recover and survive.

It’s not like 15% is a great chance of survival in the first place so why does the medical billing, coding, and insurance profession ramp up the stress with its carelessness to increase the obstacles.
by Patrick Leer
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Wednesday, September 12, 2012

flu shot and lung cancer

Flu Shot at Giant Pharmacy - no appointment necessary- many insurance plans accepted - cost is just $30 - available at any pharmacy
Walking into local Giant Food Stores today I noticed this sign for "get flu shot today, no appointment necessary, many insurance plans accepted" ... asked pharmacy to check my insurance - covered 100% of cost, yeah!

Never having previously had a medical problem in my lifetime this annual flu vaccine was just another Fall ritual like falling leaves until I remembered my lung cancer diagnosis and treatment this year and whoa nelly hit the brakes. 

The pharmacist was patient walking me through the pre-vaccination interview checklist and explaining the cancer related questions before proceeding with injection of the inactivated vaccine.

... sooooo bottom line went to the grocery store and ended up with a 'free' flu shot plus $30 in coupons ... what is not to like! This is how health care SHOULD BE!!!

by Patrick Leer
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Friday, September 7, 2012

pre-geezer lung cancer

At 61, anything that makes me statistically younger catches my attention such as reading that the average age of a person receiving a lung cancer diagnosis is 71. Especially since every 'survivor' I have met or talked to is younger than me with the exception of one aunt.  

Of the 'survivors' who share their stories on line most are definitely youngens.

Most of the noise, most of the justifiable outrage, and undoubtedly most of the use of and familiarity with ‘social media’ from blogs to Facebook to Twitter is obviously dominated by youngens.

I cannot even imagine if a diagnosis of lung cancer had entered my world during those invincible decades of my 20’s and 30’s and 40’s. My heart goes out to all the youngens and their families facing life altering diagnoses.

Yet as a young geezer 'surviving' with lung cancer I am finding it a different story, a different odyssey. Our daughter is a young adult not a child. I do not have to build in the childhood anxieties of is Mom or Dad going to die with everything else. 

There is no ‘will my lung cancer affect our marriage’ to worry about. My wife Patti cannot even remember my diagnosis due to her Multiple Sclerosis dementia like symptoms.

If I do not remind her, well then I do not have it – perhaps this logic is even more common as I progress from pre-geezer to full geezer.

It’s a diagnostic mutation of that old question does a tree make a noise if it falls in the woods.

Patrick Leer
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Saturday, September 1, 2012

distractions and sidetracks of diagnosis

Certainly one of the more curious distractions or sidetracks of my pre-diagnosis and diagnosis of lung cancer is my pulmonologist story.

Through my original x-ray, CT scan and PET scan I trusted my nurse practitioner as my medical guru and spiritual guide … she eventually advised me to see a pulmonologist.

For many with lung issues above, beyond and including lung cancer a pulmonologist is already a member of their medical team for others like me a pulmonologist serves more as a gate keeper to the next level of oncologists and/or thoracic surgeons.

Anyway after matching my insurance with available pulmonologists we set up an appointment. Since I do not trust medical people easily I began Googling: 
“His boards have expired and also his malpractice insurance. He is awaiting indictment for insurance fraud, don't give him your money or time.”  (wellness.com)
Whoa!!! I went from freaking out to ‘freaking the f#ck out’!!!

‘We are shocked’ the office manager informed me after I faxed them my google results. All she could only offer in explanation was that they had to let go a disgruntled employee recently.

Anyway I was over the barrel and running out of time. Fortunately I was able to confirm that his boards and insurance were indeed in order so I met with the guy.

Plus in my case he was just a gate keeper and IMHO he did me right hooking me up with great people for my thoracic surgeon and oncologist. I have never had a reason to see him again.

Though when I first met each of these people he referred me to – there was an awkward twilight zone moment … they did not know him.

In June I read he was indicted by a federal grand jury on charges he embezzled funds from an employee pension plan. Then Friday I saw a TV news report that he was arrested again this time on alleged charges of health care fraud and money laundering.

Lung cancer pre-diagnosis or diagnosis is totally mind and emotion consuming. I have to count my blessings for my own cancer timeline. Can you even imagine if in the middle of everything - suddenly your medical records were caught up in some legal nightmare as your pulmonologist is arrested and the office phone number is “temporarily disabled?” 

by Patrick Leer
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/