Monday, October 29, 2012

Can a cough be just a cough

Catching a common cold early last week I eventually developed a cough. With 5 decades of experience with colds my knee jerk response was to grab my bottle of guaifenesin syrup.

When it lingered suddenly the light bulb went of - duh!!! You were diagnosed with lung cancer and had a wedge of your lung cut out 7 months ago, maybe this is more than just a cough.

I was still walking at least 2  miles every and more often than not in the MS friendly Fall weather doing push and roll outings with Patti to local Halloween Parades or Fall foliage that were easily 5K outings.
Though come to think of if it I would sometimes feel an intermittent shortness of breath, even Patti had remarked you sound terrible once or twice, I had rationalized it with Fall allergies and the changing terrain of town sidewalks vs a treadmill.

What was I doing??? Why was I rationalizing a cough or intermittent shortness of breath?? Sure I had gotten the pneumonia vaccine while recovering from surgery and I had gotten the flu vaccine a couple weeks ago but what am I doing rationalizing the #1 symptom.

I was scheduled for my next CT Scan follow up in 18 days. Should I wait or should I move it up? Could the scanxiety be impairing my thinking?

Such questions are above my pay grade … so Friday noticing my PinnacleHealth Pulmonary Nodule Clinic wristband I was wearing from my thoracic surgeons office, I called them. The traditional point person for patients was on maternity leave; however describing my concerns over cough with the PNC receptionist she immediately picked it up and ran with the ball. Shortly their office was calling me back with a new CT Scan appointment just 4 days away and follow up appointment with my surgeon immediately afterwards.

Then just as I calm down my scanxiety and my cough worries … here comes Hurricane Sandy!

Got off the phone early this morning with PinnacleHealth Pulmonary Nodule Clinic and with forecasted power outages all outpatient services and CT scans, x-rays etc are being cancelled for Monday and Tuesday. Happily for me they were able to juggle me back in on Thursday, for now, depending on duration of power outages.

Surviving lung cancer can be a pain in the ass, but sometimes a pain in the ass is worth it!

Patrick Leer
Caregivingly Yours, MS Caregiver @

Saturday, October 27, 2012

lung cancer surgery ICU

Waking up after lung cancer surgery (VATS with left upper lobe wedge resection, mini-thoracotomy with mediastinal lymph node dissection) back in March was one of the more memorable moments of my whole lung cancer odyssey.

Since I had died (flatlined) for 15-20 seconds during an outpatient EBUS procedure just a couple weeks earlier – waking up from anesthesia was something I no longer took for granted.

I awoke to the sound of a person bellowing about pain. Didn’t sound heavenly with the expletives but didn’t look like hell so I must still be alive.

I was just completing an inventory of my body parts, all of which moved or wiggled when a young blond haired female face popped into my curtained enclosure whishing me hello and welcoming me to post-operative care.

First a few inane questions about who and where I was. Next – “You just had major surgery, are you in pain?” ...  "No!"  Obviously she doubted my cognitive abilities as I was shown some silly pictures of smiley and non-smiley faces and asked to pick a picture. I picked the happy smiling face.

“That’s because of the epidural! They rarely last so I suggest you take some morphine now before it wears off. Is that OK?”

Sure why not! …

“What time zone am I on? What country am I in?
It doesn't matter, it's five o'clock somewhere.”
Alan Jackson

… Next I remember contemplating that I was laying on the most comfortable mattress I have ever been on or possibly I had become a floating smiley happy face.

Standing and walking were the next major buzz words. Sounded great to me except for the major freak out moment when I discovered a tube up my penis. A deal was offered to remove the tube and I would have two hours to pee in some plastic urinal to prove the epidural was not in control of my bladder.

I had no problems standing or walking since I felt no pain. I believe I was up and walking around post op within an hour or two of when I woke up. I even had my own roadie pushing my machines around on a cart. It was cool!

Obviously happy smiley faces are not welcome to stay in ICU. Surgery was at Noon and later that afternoon, I was waving good bye to ICU as I headed upstairs with my new best friend the ‘Epidural of Fentanyl’ to recover.

Patrick Leer
Caregivingly Yours, MS Caregiver @

Tuesday, October 23, 2012

a tale of two men

John Wayne was diagnosed with lung cancer in 1964, at age 57, and underwent successful surgery to remove his entire left lung and four ribs.  Wayne chose to announce he had lung cancer and called on the public to get "check ups" (early detection saves lives) captured in this old 60 second TV ad below, in spite of Hollywood PR efforts to prevent him from going public and hurting his image and career.

Then as today his chance of surviving 5 years was 15%. Crossing the 5 year mark alive and being declared ‘cancer free’ by his doctors … and in a line that could have been taken from one of his roles, Wayne drawled, “I licked the big C.”

John Wayne would actually survive another 15 years and make another 20 films before dying of stomach cancer in 1979, three years after filming his final film, “The Shootist” in which he stars as an aging gunfighter dying of cancer.

Since 1981, the John Wayne name has been committed by the Wayne Family to leading-edge cancer research and education, in memory of their father … John Wayne Cancer Institute

Lance Armstrong, a competitive cyclist and triathlete was diagnosed in 1996, at age 25, with stage III testicular cancer that had spread to his brain and lungs. His cancer treatments included brain and testicular surgery and extensive chemotherapy. He was given a less than 40% chance of survival.

Long story made short he made some aggressive and alternate choices for treatment for maximum recovery. Four months later he was declared cancer free. This old 30 second Nike 'just do it' commercial actually captures him just after diagnosis before treatment.

His story over the decade and a half that followed would redefine recovery and surviving cancer. His unprecedented athletic accomplishments winning the Tour de France mesmerized US media resulting in legions of Americans who should never be seen in public in spandex dressing in hideously colored spandex, jumping on bikes and creating driving obstacles during the weeks surrounding Tour de France.

Most importantly people diagnosed with cancer and fighting to survive cancer had a healthy, living, pop-culture hero. The Lance Armstrong Foundation which evolved into the brand LiveStrong unites, inspires and empowers people affected by cancer.

Empowerment is essential when you simply feel less whether it’s from surgery or radiation or chemotherapy. No medical professional can give you a pep talk that equals seeing a fellow cancer survivor go from stage III to butt kickin’ the world!

Well, unless … “If something sounds too good to be true, it probably is.” 

Patrick Leer
Caregivingly Yours, MS Caregiver @

Friday, October 19, 2012

pinkenomics of lung cancer funding

One of the most curious side effects since my diagnosis of lung cancer has been increased vision and awareness. To be sure, a quarter century of spouse caregiving for my wife with Multiple Sclerosis has unquestionably given me tunnel vision but since that damn spot appeared, somehow … I can see clearly now.

Before I saw products on grocery shelves in October painted in pink for Breast Cancer Awareness Month. Now if look closely I notice some products actually donate money and some are just colored pink. Could they just be colored pink for profit?
I buy bottled water under the ‘whatever is less expensive’ principle of economics and Acadia met those standards while shopping the other night. Examining the pink packaging I discovered nowhere is there any mention of donated proceeds or even of breast cancer awareness.

Even more curious after a little Googling was to read news coverage from Mid-Atlantic and New England States of multiple Breast Cancer Walks curiously mentioning thousands of participants “drank from bottles of Acadia spring water with special pink labels”. Obviously least expensive and pink labels gets a lot of free marketing in October.  

Grocery shopping in October is obviously driven by pinkenomics, with the exception of Trick or Treat candy. Pink displays abound promoting one product or brand or another; yet, has anyone noticed any in-store awareness information or facts about breast cancer - or just pink food coloring?

From a guy’s perspective while the world paints itself pink for a month … LUNG CANCER kills more mothers, wives, and daughters each year than breast cancer, uterine cancer, and ovarian cancer combined - what am I missing here?

Patrick Leer
Caregivingly Yours, MS Caregiver @

Monday, October 15, 2012

in search of a superhero

When spider man walked out of the stall in the men’s room I knew it was going to be a great day!

Surviving lung cancer is still about living. Yes, there are moments when I surrender to the whole “he who must not be named” syndrome of Harry Potter and do not want to even “say” or “hear” about the mathematics of surviving lung cancer. Yes, there are moments I stare in disbelief at the confidence of friends expressed in emails that “everything will be OK” while they themselves fade further away in the real world.

Last month I had written an entry called "fading red capes" in my blog about being a Multiple Sclerosis spouse caregiver. In closing I had mused, why can’t life be like a comic book? Where better to find that answer than 'Gotham', 'Metropolis' or as Google Maps labels it, New York City.

It was time for a quest! I’m not sure about the whole bucket list thing especially only 10 months into my diagnosis. However, in Summer my oncologist shared with me she gives all her patients regardless of type of cancer or stage of cancer the same advice – live in today do not put off life.

Accessorized with my lung cancer survivor cap, I headed to New York Comic Con in search of a superhero. I was not disappointed – thousands and thousands of superheroes walked and talked.
New York Comic Con 2012
I was 'man hugged' by Superman, high-fived by Spiderman, given a thumbs up by Batman and embraced with positive reinforcement by everyone I interacted with … almost collided with Kevin Bacon (the real one and a whole new variation on the Six Degrees of Kevin Bacon) got a sketch made of myself by a graphic artist, talked with artists, fans and even WWE Divas ... I had an absolute mesmerizing and enjoyable day where for a moment in time the walls, screens, and pages that normally separate entertainment and reality simply do not exist.

Now don’t get me wrong, it’s not that I don’t have confidence in thoracic surgeons and oncologists but in the words of the King of Comics, Jack Kirby “… today we have our superheroes. We believe in them because we believe in ourselves.” 

Patrick Leer
Caregivingly Yours, MS Caregiver @

Thursday, October 11, 2012

hospital survival kit for lung cancer surgery

Surviving lung cancer, for me, began with surviving three nights on a hospital cardiac unit ‘recovering’ from lung cancer surgery in March 2012 at PinnacleHealth Hospital.

When an EBUS outpatient procedure went wrong a week earlier I unexpectedly ended up overnight on this cardiac unit and got a sleepless preview of the 24/7 chaos. Soooo I prepared my own survival kit …

First I bought a pair of Koss headphones at Walmart for around $30. Normally I use ear buds but I learned from my preview stay that you NEED the ol’ school kind of headphones that completely cover your ear, cancelling outside noise. Make sure the padding is nicely cushioned as you will be wearing all the time especially for sleep, even if you have nothing playing through them.

I shut out the hospital around me disappearing into days of audio books on CD I stocked up on at my local public library plus a couple music CDs guaranteed to induce sleep.

I brought name tags and a magic marker to label myself or better yet my hospital gown as to how I preferred to be called, “Hello my name is Patrick” … For whatever reason 61 years ago my parents chose to call me by my middle name since birth and that is how I have been known my whole life. Medical professionals are anal retentive about first names; however I do not answer to my first name.

Stylin’ is important to recovery, well at least to me. I knew from reading my brochures that walking the halls was going to be part of recovery from lung cancer surgery, 4X a day or more. When physical therapist told me how often and how far I walked might get me discharged sooner, believe me I was motivated!

Hospital gowns are designed for access to patients laying in bed however they are not the most functional strolling attire. Now I have been told I have a fine ass but hanging it out of a hospital gown is  such a lunatic asylum fashion statement. So I made sure to bring my leisure pants, Captain America and Mario Brothers. … While others shuffled along with one hand behind their back trying to hold their gowns together or required an aide to hold their gown … I strolled the halls like fashion week!

Bring a hat. Sink sponge baths and rinse-less shampoos may be sanitary but it’s not a real shampoo. Ball cap style works best for napping in with no back or side brim.

What all the medical professionals fail to realize is that … if you think you 'look good' - then you think you 'feel good'.

P.S. I was also 'off the grid' since I do not own a smart phone and only my daughter even knew I was in for surgery much less had been diagnosed with lung cancer. 

Patrick Leer
Caregivingly Yours, MS Caregiver @

Tuesday, October 9, 2012

PinnacleHealth Pulmonary Nodule Clinic

“The Pulmonary Nodule Clinic enables us to help find and treat these nodules sooner, ideally when lung cancer is in its early stages and potentially curable.” Troy Moritz, DO Surgical Director Pulmonary Nodule Clinic

“The PinnacleHealth Pulmonary Nodule Clinic is the only multidisciplinary group in the Central Pennsylvania region designed to comprehensively manage pulmonary nodules.

“Pulmonary Nodule Clinic patients benefit from our 20 year affiliation … with Fox Chase Cancer Center in Philadelphia”

As you can see from my goblet full of bracelets and this entry I am more than glad to promote this idea, after all Troy Mortiz, DO was my thoracic surgeon for my successful lung cancer surgery.
Personally I did not have the option of the Pulmonary Nodule Clinic from the beginning of my lung cancer odyssey. Frankly it is unclear why? 

“A pulmonary nodule is any “spot” in the lung that is less than 3 centimeters in diameter … The majority of nodules are found through testing performed for other reasons, such as x-rays …”

My spot was only 9 mm and was found as a result of my annual physical.

A ‘spot’ in the lung may be technically a pulmonary nodule but for me it was a scary, lonely mental and emotional fall down the proverbial rabbit hole just days before Christmas.

My lung cancer odyssey was launched and navigated in its critical early stages by the extraordinary efforts of my family practice nurse practitioner and staff. … They went to war for me "to live" even when all I wanted to know was 'how long before I died'.

Just looking through this brochure and test calling the number I was stunned at how simplified I believe it would all now be. Of course I cannot recreate the mental and emotional blur but I felt the voice on the other end of the phone sounded like hope.

by Patrick Leer
Caregivingly Yours, MS Caregiver @

Thursday, October 4, 2012

scanxiety a universal emotion

Midpoint between follow up CT scans after lung cancer surgery I found myself Googling “scanxiety” and curiously found a 2011 song by that name on You Tube, “Scanxiety (Waiting for the Scan)” by a band called The Wide Plains.

Googling more, I found a June interview which in turn lead to a link to the The Wide Plains Facebook page, messaged them asking if they would post the lyrics, which gratefully they did … danke schön!

Is scanxiety a universal emotion? … Beside being one of the 1 in 14 Americans diagnosed with lung cancer and experiencing ‘scanxiety’, how many others worldwide face the same anxieties undergoing medical tests. 

More than just a song, the Wide Plains' singer is by day a thoracic oncologist and leads a pallative care team. The lyrics of “Scanxiety” intend to express the apprehension and fear of patients with cancer who have to undergo scans at regular intervals as part of their follow-up care.

Toto?, I have a feeling we're not in the age of silly love songs anymore.

Scanxiety (Waiting for the scan)
The Wide Plains, Summer 2011

Here comes the fear again
While I´m waiting for the scan
Trying to stay as calm as I can

Though I felt the pain again
In my chest and in my brain
I am sure it is growing again

It`s a hell of a night before the scan
I´m afraid it will never end
If only I could tell I`m scared

But he`ll be agonised as well
Keeping silent as good as I can
The kids should have a normal day

I can hear my heart beat when they call my name
I lay down on the stretcher
Then the door will close
I`m holding my breath
and I have to go through the tunnel again on my own

They scan my body slice by slice
for lumps, nodes and opacities
while anxiety`s overwhelming me

if he only learned how to bring the news
and while he thinks to mean it well
he`s flooding me with guilt and shame

I long for words of warmth, support and empathy
I need your compassion
Not your dominance
Nor Your disrespect
To push it beneath the surface for six weeks
To hear their song on You Tube dubbed over some ‘interesting’ old super 8 footage … just click below

Patrick Leer
Caregivingly Yours, MS Caregiver @