surviving the financial costs of lung cancer

Whenever I try to play the ‘lung cancer card’ on medical bill collectors they politely but correctly point out that whether I live or die has no bearing on my medical debt, it just goes to my family.

Medical insurance and medical providers have been swarming across America for years like the biblical plague of locust consuming an ever larger share of family income in a last chance profit grab raising the bar on medical costs before implementation of Obamacare.

In my story specifically, monthly medical insurance premiums have grown 147% and yearly deductibles have grown 757% in the last 4 years. My story is not unique, health care costs are outpacing income growth.

Unlike the Federal government families cannot deficit spend and as I am still trying to pay off my yearly medical deductibles from 2012 I am financially crippled to incur any new medical debt for 2013.

Admittedly my lung cancer odyssey is complicated in that self-employed and lacking an income producing spouse; the months recovering without income were economically catastrophic.

Soooo with my medical insurance ‘high deductible’ plan reset when the clock struck midnight on January 1, 2013 … I have no choice but to reevaluate health benefits vs financial costs and frankly choose between scans, appointments, procedures and yes, living expenses.

The first months of my lung cancer diagnosis were consumed with the question “how long do I have to live?” … Grateful for this 'overtime' year the question now is “how long can I afford to live?”

Last Spring I read in our local paper of church and/or community fundraisers for families struggling to meet their medical insurance deductibles while battling cancer.  Too much makes sense now, including …

"Lung cancer patients fortunate enough to live up to 5 years after their diagnosis had the highest bankruptcy rates…” American Society of Clinical Oncology

My heart and prayers go out to the uninsured and under-insured and their families facing a diagnosis of lung cancer. Being unable to afford to live is cruel.

Patrick Leer

Health Activist:

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

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

health lung cancer harrisburg pennsylvania

simply the best

Bearing a dozen white roses for my Nurse Practitioner, Nichole S. Cambruzzi, MSN, CRNP (nee Scicchitano) PinnacleHealth Primary Care, I returned to Blue Mountain Family Practice on Monday for my first annual physical since my diagnosis of lung cancer.

Why flowers? Because Nichole is simply the best!

She started the ball rolling uphill 13 months ago with the x-ray which is likely why I am alive today.

She had the perfect blend of guts and courtesy to call me just two days before Christmas with the possibly bad news, “just in case”.

She and her staff went to war for me with my insurance company for additional scans because my nodule was only 9 mm and not the ‘cookie cutter’ border line of 1 cm.

She had the compassion and trust to write me an RX for 60 Ativan guessing that even for a guy some days and nights learning to live with a lung cancer diagnosis just may need a couple pills. I still have 10 left. 

Through it all she has never cut me any slack over my ‘high normal’ blood pressure, there’s no playing the cancer card with her.

She made less money off me than anyone this past year, yet was the only medical professional to actually make a donation in my name to the 5K Lung Cancer Run/Walk I participated in.

Her staff in particular, Melissa and Chas, put up with all my 'drama queen' telephone moments while trying to set up appointments with labs for my scans and specialists I needed that accepted my insurance. … They were the voices of sanity where there just is no support group … the newly ‘self-diagnosed’.  

Oh and while my own lung cancer timeline played out successfully due in large part to her early detection … Nichole more than just saved one life, she created another life – finding time to give birth.

In my humble opinion, Nichole S. Cambruzzi, MSN, CRNP is simply the best there is in South Central Pennsylvania.

"In family practice it is a holistic way of treating a patient, we can look at the big picture, it is diverse and always interesting. You can help people on many levels." Nichole S. Cambruzzi MSN, CRNP

Patrick Leer

Health Activist:

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

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

health lung cancer harrisburg pennsylvania

endobronchial ultrasound (EBUS) biopsy went flatline

EBUS biopsy drivers are promoting themselves increasingly all over social media as the next best thing since sliced bread for lung cancer.

But hold on a minute … last March while awakening from anesthesia after my EBUS ride at PinnacleHealth Hospital I learned I had flatlined for 20 seconds. 

Story only gets better months later when my new pulmonologists reviewing the PET Scan DVD that prompted this EBUS biopsy discover that the original radiologist who wrote the report was apparently a disciple of ‘chicken little’ that is he was not familiar with me, my history or possibly even lungs. 

The whole EBUS guided biopsy was supposed to be about ‘proper staging’ yet when I flatlined the EBUS was aborted before any biopsy was taken.

I already had a CT Guided Lung Biopsy of my left upper lobe confirming my 9 mm tumor as malignant and primary = Stage 1. See my lung cancer timeline above.

But because the disciple of ‘chicken little’ had seen a “right-sided subcarinal adenopathy" my thoracic surgeon, my oncologist and some nebulous entity called a tumor board charged into my right lung with a bronchoscope. (this mean looking thing to the left)

Now in hindsight I can raise my hand and ask how come "Bob" (that's what I've taken to calling this alleged "right-sided subcarinal adenopathy) was not visible on the CT Scan only two weeks earlier or on the x-ray weeks before that. Also with the gift of hindsight I am aware of the high false positive readings of PET Scans.  

Then I was just scared and lonely … knowing what I know now, it’s safer to get a second opinion. Have a pulmonologist, not a radiologist, re-read your PET Scan DVD before hopping on the EBUS and maybe never returning.

Knowing what I know now, the lack of 'survivor advice' in the beginning of trying to survive lung cancer was dangerous to my health. 

So what went wrong with this “minimally invasive outpatient procedure”?  … the hospital’s senior cardiac guy wanted me to know that I “definitely did not have a heart attack” and in his opinion there was nothing wrong with my heart.  His “best guess” was vasovagal response. The ‘vagus nerve’ runs right through where they were working with the bronchoscope. 

Personally I prefer to remember smiling at my daughter’s original wise crack, “Well, are you resurrected or a zombie?”

Patrick Leer

Health Activist:

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

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

health lung cancer harrisburg pennsylvania

lies, cheaters, and cancer

Do those of us genuinely trying to survive cancer need agents? Do we need a “certified” stamp?

A Notre Dame University Football star, Manti Te'o, apparently invents an imaginary girlfriend dying of cancer to improve his chances of winning the Heisman trophy.

Then there is Lance Armstrong who built a financial empire on lies, cancer, and steroids. As one talking head recently claimed, “we can now retire the gold medal for cheating."

There is even a wikipedia page, of cancer victim hoaxes.

Hey!!! Is anyone listening? Most of us actually don’t lie and don’t cheat – we just try to outlive cancer. 

Patrick Leer

Health Activist:

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

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

health lung cancer harrisburg pennsylvania

driving after lung cancer surgery

Driving and independence are intertwined in American culture. Volkswagen’s “fahrvergnügen” (driving pleasure) ad campaigns epitomized that twenty years ago.

Sooo a year after diagnosis of Stage 1 lung cancer, why does it not surprise me that this may be the most frequently asked question about recovery from surgery.

For me it was always about the damn shoulder harness on my seat belt vs my rib cage  In a passenger seat it was less painful because the shoulder harness crosses away from my surgery on the left upper lobe. Sitting in the driver’s seat – whoa nelly!!  

In the passenger seat I built a nest of pillows to reduce the jostling; however one cannot exactly drive safely with a pillow between your chest and seat belt.

Remembering that athletes compete after rib injuries wearing flak jackets I tried using my faux down vest. … In two weeks I was soloing with the vest.

Eat your heart out Volkswagen driving in my personal  “Fahrvergnügen für Überlebende” (driving pleasure for survivors) vest trumps any old merchandise you got! :)

Your surgeon will suggest how soon you specifically should be driving as each surgery is a little bit different. FYI, my surgery is detailed above in my lung cancer timeline.

Also for the rest of us out there on the roads, duh! if you are still taking narcotics for pain after surgery maybe you should wait ‘before operating dangerous machines’.

related: recovering from lung cancer surgery

Patrick Leer

Health Activist:

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

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

health lung cancer harrisburg pennsylvania

Stage 1 lung cancer, free-falling and shadows

Shadows figure as prominently into lung cancer as Peter Pan’s shadow figures into the symbolism of J.M. Barrie's storytelling.

Who does not remember their childhood anxiety over Peter’s shadow “falling off”?

My life is still free-falling from that original x-ray shadow that revealed a 9 mm vague nodular density in left upper lobe of my lung 13 months ago.

Sorry after a year of this I tend to think metric forgetting that most American newbies and family and friends think in inches. 9 mm is .035 inches, If you want to pick up a ruler that would be the tiny mark greater than 1/8 of an inch and less than a 1/4 inch. A ladybug sized tumor if you prefer a visualization.   

Yes, it was removed successfully 10 months ago yesterday. Yes, there was no evidence of metastasis at that time.

Still … surviving Stage 1 lung cancer when nestled all snug in my bed ... shadows of opposite lung lymph nodes, not sugar plumbs, too often dance in my head. 

Patrick Leer

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

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

health lung cancer harrisburg pennsylvania

screen for lung cancer

I cannot help but notice the trumpeted endorsements by Lung Cancer Alliance and others of low dose CT screening for those at high risk for lung cancer.

Likely I am writing this today because my Nurse Practitioner over a year ago went a step further and believed a chest x-ray should be part of an annual physical.

I write about my odyssey with Stage 1 lung cancer. With increased availability of CT screening there should be more of us filling the ranks of those trying to survive lung cancer every day – DO NOT wait for symptoms!

Unfortunately, there is no “idiot’s guide to a pre-lung cancer diagnosis” – so just a few thoughts having recently walked the walked myself.  

When I heard the words ‘suspicious’ and ‘nodule’ in the same phrase with lung, I immediately wanted to know how long I had to live.

A year ago an X-ray begat a CT scan which begat a PET Scan. As all this stretched on for over a month I became mentally, emotionally and physically obsessed by the question. Time gets real relative when the word lung cancer enters your daily vocabulary.

Yet, from receptionists to medical technicians to my Nurse Practitioner and eventually Pulmonologist I was stonewalled by an ever growing conspiracy of silence or optimism, “it could be a lot of things”.  

When I tried a new tack by simply typing my scan reports into Google and calculating my own prognosis then asking my Nurse Practitioner to comment, she suggested I “step away from the Internet”.

Once diagnosed, I was buried in helpful materials like manna falling from heaven but pre-diagnosis I was wandering alone in the proverbial wilderness.

The time of waiting I learned is known as scanxiety.  Like a lot of things artists express it better. When the songwriter is also a thoracic oncologist you get lyrics like these below to “Scanxiety”:

“I long for words of warmth, support and empathy

I need your compassion

Not your dominance

Nor your disrespect”

Patrick Leer

Health Activist:

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

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

health lung cancer harrisburg pennsylvania

donating blood and lung cancer

Noticing a blood donation drive by PinnacleHealth I thought I should start 2013 off on a righteous foot after all PinnacleHealth Hospital is  where I had my successful lung cancer surgery.

Plus with all the blood draws for pre-scans, pre and post-surgery, and this or that appointment, I felt kind of like being stalked by a vampire for most of last year

Soooo needless to say I was surprised to learn that as a lung cancer ‘survivor’ I could NOT donate blood. 

In further conversation I learned that since I had only surgery for Stage 1, with no chemotherapy nor radiation and that with no evidence of metastasis that I could be re-considered in 5 years. Additionally I learned that different cancers have different time protocols for blood donations.

Curiously on the other hand, for everyone and anyone else, I discovered an article reporting that donating blood “reduces cancer risks ... especially colon, liver, throat and lung cancer"

Patrick Leer

Health Activist:

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

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

health lung cancer harrisburg pennsylvania

time is of the essence when treating lung cancer

Admittedly this story is not the front cover but this is the kind of coverage long overdue for lung cancer.

Tabloids are first and foremost not only read by the masses but engineered to scream loud and clear to the most people possible:

Time is of the essence when treating lung cancer

If cancer is found before it spreads to lymph nodes, the cure rate is upwards of 75 percent

The New York Daily News is the most widely-read newspaper in the New York City metropolitan area (the largest metropolitan area in the United States), and its ranked #5 among the top 25 U.S. Daily Newspapers.

For too long such health news has been buried deep in the inside pages of publications Spiro Agnew would have long ago labeled as read only by an “effete core of impudent snobs” or stories of real lives marginalized and intellectualized because of stigmas associated with smoking.

Screaming headlines save lives.

Patrick Leer

Health Activist:

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

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

health lung cancer harrisburg pennsylvania

look into the faces of lung cancer

What are 'we the people'? A mutant version of the three wise monkeys who "see no" lung cancer? Open your eyes and see your neighbors, friends, and family. 1 in 14 Americans are diagnosed with lung cancer. 

from the Lung Cancer Alliance

"We’re proud to share with you these Faces of Lung Cancer. Each person represented here is a mother, father, brother, sister, neighbor and friend, whose lives have been forever changed by lung cancer."

"We welcome you to share your photos as we represent the true faces of this disease. We hope to dispel many of the misperceptions and the long held stigmas associated with lung cancer.

Add a Face to end the stigma!"

Patrick Leer

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

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

health lung cancer harrisburg pennsylvania