Wednesday, November 28, 2012

snow falling on lung cancer

I awoke to snow falling outside the window. It was Tuesday, February 7th, the Super Bowl had just been played two days earlier and Valentine’s Day was looming.

For the first time in my life I had spent the night in a hospital because of a pneumothorax (collapsed lung) following my CT guided needle biopsy

Staring out the window believing I was watching my last snow fall - memories of my life swirled in a snow globe.

I’m an old dude, I never knew anyone who ever survived lung cancer. I was tired of 7 weeks of tests and kids in medical coats. To quote another old dude, “You don’t need a weatherman to tell you which way the wind is blowing”.

My melodramatic melancholy was shattered by my adult daughter arriving with chocolate milk. (To truly know me is to know that chocolate milk is my elixir.)

Tuesday morning, Nov 27th I awoke to snow falling again, 9 months and three weeks later. Five mornings after Thanksgiving, and 25 days until the 1 year cancerversary of the chest x-ray that caught the 9 mm vague nodular density in my left upper lobe.

That tumor is gone and I’m here. If I can measure my life living with a lung cancer diagnosis by smiling at the changing seasons and standing in falling snow, I am a man blessed. 

Patrick Leer
Caregivingly Yours, MS Caregiver @

Sunday, November 25, 2012

surviving cancer "r" us

One of the stranger twists in the year of living with a lung cancer diagnosis is realizing that a year that began with my primary question ‘how long do I have to live’ is morphing into relearning to live.

Seems silly to write after all I’m 61, one would think I would know how to live by now. But cancer changes you. ‘Survivorship’ is more than about the cancer. 

I ‘acted’ through Christmas and New Year's last year hiding the life altering phone call. It was emotional hell for the holidays while all around me fa, la, la, la …

Honestly I considered skipping Thanksgiving. It’s already been an emotional maelstrom for me for almost a quarter century since my wife woke up Thanksgiving morning unable to walk, and barely able to see or talk with her first major Multiple Sclerosis exacerbation. That Thanksgiving ended with her hospitalized and me holding our 18 month old daughter in my arms never feeling more lost and alone in my life.

Yet as the holiday dust settles I am beyond thankful I chose to continue my annual tradition of visiting with cousins in Northern New Jersey.

It’s impossible to feel like a ‘cancer leper’ when a 6 yr old liver cancer survivor climbs all over me. I feel no stigma or judgment of a lung cancer diagnosis when sharing time with the family of a breast cancer or ovarian cancer survivor. Family stories of survival and not survival are shared effortlessly in and out of the conversations of three generations from life to football to the trials and tribulations of a pre-school New Jersey princess.

When I am not the only one wearing the scarlet letter, well in this case a kelly-green C, a pink C, a teal C and a pearl C … surviving sure feels different ... more like surviving cancer "r" us. 
Patrick Leer
Caregivingly Yours, MS Caregiver @

Sunday, November 18, 2012

lung cancer the puppet master

It’s slugs that attach to and control people in Robert Heinlein’s science fiction classic about paranoia and mind control, “The Puppet Masters”. … Over the last 11 months, the slug riding me has been my lung cancer diagnosis.

My original pulmonologist fell off my ‘team’ after the third month due his legal problems (financial in nature not medical). Believe it or not yes it has taken this long to find new pulmonologists between apparent shortages in the specialty in our area, insurance compatibility and yes while that slug rode me like a stick horse my focus was lung cancer, lung cancer and lung cancer. 

Sitting down with my newest pulmonologists they stressed sometimes additional lung issues are just about the lungs.

Reviewing the DVD of recent and CT scans for the past year they simply did not agree with some of the radiologist’s reports, pointing out both the risks of false positive readings and that the degree of pulmonology experience varies with radiologists and therefore their reported ‘impressions’ … and yes, oncologists and thoracic surgeons.

As long as I sit down to read a radiologist’s report of a CT scan with that slug riding me every enlarged lymph node I read about is going to freak me out … and the bottom line is that is just not true.

… call them the next time I have a bronchial cough with a cold as antibiotics and steroids to speed up healing would be more productive than having that slug ride me to go get a CT scan which just has to be repeated because the lymph node activity is inconclusive due to the chest cold.

Come on slug … we've got an oncologist appointment this week …

"Move 'em on, head 'em up,
Head 'em up, move 'em out,
Move 'em on, head 'em out Rawhide!"

Patrick Leer
Caregivingly Yours, MS Caregiver @

Wednesday, November 14, 2012

Congress vs Lung Cancer

1 in 14 Americans will be diagnosed with lung cancer. How many Americans will take a just a moment of their time to help?

Back on September 19th, with bipartisan support the US House of Representatives passed the Recalcitrant Cancer Research Act, directing the National Cancer Institute to target the most deadly cancers. Priority status was given to pancreatic and lung cancer.  

Lung and Pancreatic Cancer are the “deadliest cancers”. Pancreatic is the ‘Most Deadly Cancer’ with 5 year survival rates at 4%. Lung cancer is the top cancer killer in the US killing over 160,000 annually with a 5 year survival rate of 15%. I'm sorry to pop anyone's 'pink bubble' but lung cancer kills more women than breast cancer.

The Congressional Budget Office has determined that this bill would have “no significant budgetary effect during the 2013-2017 period” because it only refocuses already established funding within NIH.

Before recessing for the Presidential elections, the US Senate did not vote on this legislation. Congress returned yesterday, November 13th, for unfinished business. 

I encourage you to write, email or call your ‘current’ Senators encouraging them to vote to pass the Recalcitrant Cancer Research Act (S. 3566).

You can easily find mailing addresses, phone numbers, email addresses, and on-line ‘contact form’ of your US Senators at Senators of the 112th Congress.

Thank you!
Patrick Leer
Caregivingly Yours, MS Caregiver @

Tuesday, November 13, 2012

the lung cancer funk

When I wake up with phrases from the radiologist’s report from my most recent CT scan dancing in my head instead of visions of sugar plumbs it’s maddening.

Believe it or not, a “new subcarinal lymphadenopathy” is far more important to me than who won a Presidential election.

Yeah, my thoractic surgeon immediately following my recent CT scan saw no tumors or suspicious areas and left me with the impression that it was  definitely not bad news but …” because of inflammation from chest cold we should do another scan in 8 weeks.

Yet picking up the radiologist’s report a week later I can’t even remember how long I sat starring dumbfounded at the results and impressions from the report in the parking lot. Even though my cough was improved, the world around me seemed to fall away.

After pushing my wife’s wheelchair for a couple miles on Sunday over varying terrain both in surface and incline through dry marsh and woodlands, I was experiencing significant sinus congestion and a dry cough. Patti whose Multiple Sclerosis dementia-like symptoms prevent her from ever remembering I even have lung cancer, turns to me and remarks, “you sound terrible, you’re not dying or something are you?”
She meant nothing by the remark. She lives in the now, that’s simply what I sounded like to her, and soon her attention turned to she was hungry.

Yet for me the remark, especially at sunset, cued the poignant first lines of Warren Zevon’s final song “Keep Me In Your Heart” written as he died of lung cancer:

“Shadows are falling and I'm running out of breath
Keep me in your heart for a while …”

Thank God my moles are boring. What a treat to walk into any doctor’s office the next day and come out with a clean bill of health with no asterisks. My annual full body check by my dermatologist on Monday found all my moles boring and my skin neither of concern nor suspicion.

My Dad was diagnosed and treated successfully for melanoma preceding his diagnosis and death from pancreatic cancer. With family history and cancer such a bugaboo needless to say I was apprehensive. … but for once this year it was all good news!

May the streak continue … on to pulmonologist next and then oncologist. 

Patrick Leer
Caregivingly Yours, MS Caregiver @

Thursday, November 8, 2012

November is awareness ...

Awareness sometimes is just reality biting you in the ass.
My Dad became my Mom’s caregiver spouse in 1987 when she suffered a massive stroke in ICU following carotid artery surgery. … I became Patti’s spouse caregiver when she awoke Thanksgiving morning 1989 unable to walk and barely able to see or talk and by afternoon was hospitalized with her first major Multiple Sclerosis exacerbation.

Thanksgiving was about ‘caregiver awareness’ for us before it was ever designated. In 1994, the National Family Caregivers Association began promoting the week of Thanksgiving to acknowledge family caregivers. Eventually the entire month of November would become National Family Caregiver’s Month. 

November is also designated Pancreatic Cancer Awareness Month. My Dad died of Pancreatic Cancer 15 years ago. I spent the longest night of my life holding him, talking with him and sharing “the time of angels” ... I have been there for the closing chapter of cancer. That’s the kind of awareness that just does not pigeonhole into a month.

My own lung cancer odyssey began with a 9 mm vague nodular density on a chest x-ray 10 months and 2 weeks ago. This will be my First Lung Cancer Awareness Month as someone surviving lung cancer. To me every day is Lung Cancer Awareness Day not just November.

It’s difficult not to notice the common denominators of long term spouse caregiving and cancer. Cause and effect? I seriously doubt it but then I’m left to pause and wonder if ‘the deadliest cancers я us’ isn’t becoming some macabre family tradition. More likely, spouse caregiving equals long term stress which does take a huge toll on the immune system.

To paraphrase Shakespeare from the Twelfth Night, ‘Be not afraid of awareness, some are born aware, some achieve awareness, and some have awareness thrust upon them.’

Patrick Leer
Caregivingly Yours, MS Caregiver @

Monday, November 5, 2012

Lung cancertainment

Lung Cancer Awareness Month continues ... 

It was definitely a WTF moment for me recently driving around listening to an anthology of short stories entitled Mystery Writers of America Presents Vengeancewhen I found myself listening to a short story involving lung cancer in vengeance.

OK rational brain time - Lung Cancer is the number one cancer killer, 1 in 14 Americans will be diagnosed with it … how can writers of contemporary mystery fiction really ignore it?

Breaking the taboo of the C-line should be a step forward except some argue that the portrayal is too often two steps backwards, but is it?

My daughter showed me an old pilot episode of an AMC series “Breaking Bad” staring Bryan Cranston who portrays a 50 year old high school chemistry teacher diagnosed with Stage III Lung Cancer who turns to a life of crime making crystal meth to pay the bills.

OK while catching up on Season 1, I admit it has been a bit of a dark captivation watching and relating to why he tries to keep his diagnosis secret, feeling the economic suffocation of a lung cancer diagnosis discovering who and what your insurance coverage actually covers. Filtering out fiction and fact with the eyes of someone trying to survive lung cancer – one thing for sure, money determines treatment options.

A little too close to home, his fictional character also struggles with worrying about the future of his fictional son with Cerebral Palsy. I know the feeling with my own real life lung cancer diagnosis and my real life wife severely disabled and dependent with Multiple Sclerosis.

“Lung cancer is a challenging topic for film and Television … it is treated less sympathetically than other diseases, often being used as a symbol of self-induced harm or catastrophe.” Lung cancer on screen, European Society for Medical Oncology’s 2012 congress

Patrick Leer
Caregivingly Yours, MS Caregiver @

Saturday, November 3, 2012

the lonely vigil "Shine A Light On Lung Cancer"

As someone surviving lung cancer and the lone attendee at the Lung Cancer Alliance Shine a Light on Lung Cancer Vigil: Hershey, PA ... I frankly am at a loss how to feel.

For an event that was promoted to “provide hope and compassion and empower attendees” and “a moving event and not one to be missed” it certain failed to live up to its hype as no one was there. Neither attendees nor organizers were to be found.  … Nor did LCA contact respond to any of my emails since registering in advance for this promoted Vigil.

While Lung Cancer Alliance is known for their national advertising campaigns tonight’s experience leaves me wondering about how ...
... translates to 'boots on the ground"? ... I sure felt alone tonight!

Is it that no one locally cares? No one survives? Or local organizers just got overwhelmed? If I let my mind wander this could get unnerving.

On the other I was personally able to raise lung cancer awareness among a young couple in love looking for a less well lit part of the park and two skateboarders all of whom noticed me sitting alone on the wall with my hat emblazoned with “lung cancer survivor” and took the time to say “hi”. (Though most likely they suspected I was a cop and just wanted to inspect the hat closer.)  Hey! Awareness works in mysterious ways.

So it was not a total waste for a 45˚F (7.2 ˚C) evening in November. It was a +4 for Lung Cancer Awareness Month ... and after all due to early detection of lung cancer, 10 months later I am not only alive but doing a lot better than ol' Humpty Dumpty sitting on that wall.

P.S. (Mon 11/5) I did hear from Lung Cancer Alliance national office this morning. They were most apologetic - apology accepted - and concerned about their local representative who they now realize they also have not heard from either before or since scheduled vigil. 

Patrick Leer
Caregivingly Yours, MS Caregiver @

Thursday, November 1, 2012

definitely not bad news

Lung Cancer Awareness Month kick-off coincided with my CT scan Thursday at PinnacleHealth Hospital so the tech was kind enough to photograph the moment.

Actually the CT scan was my second 4 month follow up scan since lung cancer surgery in March 2011 accelerated two weeks because of a lingering cough and intermittent shortness of breath (and then delayed two days due to Hurricane Sandy).

November is Lung Cancer Awareness Month ... Do you know the #1 and #2 early signs of lung cancer?   #1 lingering cough  #2 shortness of breath with activity … needless to say I was in high scanxiety!

Following the scan I sat down with my thoracic surgeon who most importantly saw no tumors or suspicious areas.

Sooo the verdict was definitely not bad news but the jury is still out over whether it was excellent news.

He wants to do another CT scan in 8 weeks after all the respiratory inflammation of chest cold activity has settled down. It’s about my notorious right side lymph node and seeing how it's behaving.

On my cancer timeline this one lymph node has become ‘notorious’ because it's also known by it's stage name the "13mm right-sided subcarinal adenopathy" that lit up my PET scan 10 months ago brighter than the actual cancerous upper left lobe nodule. Though only 9 days earlier it was not even significant on my fist CT Scan. My original pulmonologist was not particularly concerned about the lymph node while both thoracic surgeon and oncologist originally felt it was worth a closer look and possible biopsy before lung cancer surgery. However I went bradycardic even flatlined for 15-20 seconds during the outpatient EBUS procedure and it was never completed. Four months later during my post-surgery, follow-up CT scan this lymph node was again insignificant having shrunk back to normal size. Yet here again it was swollen.

In my 'worry world' this keeps me awake because cancer on both sides would be a whole different story or staging. However in the my 'real world' cancer has only been found on one side.

In it's defense … lymph nodes swell for a lot of reasons including doing their job so at this point regular ‘monitoring’ is pragmatic medicine. 

And in the meantime I will be sitting down with other jurors, my oncologist and new pulmonologist in the next couple weeks to talk.

(To paraphrase Lewis Carroll)

"The time has come," the Walrus said,
"To talk of many things:
Of coughs -- and scans -- and lymph nodes
Of scanxiety -- and lungs ..."

Lesson learned from Day 1 of Lung Cancer Awareness Month - NOT bad news can be good news! 

Patrick Leer
Caregivingly Yours, MS Caregiver @