Monday, December 31, 2012

a toast to Chantix and a year without smoking

New Year’s Eve, New Year’s Day, New Year’s wishes, New Year’s meals for good luck, yada yada. All the "Auld Lang Syne" hoopla was beyond haunting last year it was annoying.

All I wanted to know was how long did I have to live? Scanxiety went warp speed as “nodular density” became “spiculated nodule”.

For a lot of reasons, I had chosen to keep all this medical news and worries about lung cancer to myself. I was losing it as the Grim Reaper sat next to me while we surfed the Internet for answers, clutching my penny for the ferryman.

The flaw in my planned deception was our adult daughter who was living at home. I needed a ruse for any unusual emotional behavior like freaking out, crying, getting depressed or pacing the house all night.

Then I remembered Chantix and their TV commercials featuring allegedly everyday people with the most ominous product warnings since the atomic bomb. 
Important Safety Information: Some people have had changes in behavior, hostility, agitation, depressed mood, and suicidal thoughts or actions while taking or after stopping Chantix
Ironically I even had a starter kit and three month supply laying around from a year ago when I almost started but a rash of news stories about heart attacks, and people dying from Chantix caused me to say. “fugetaboutit”. But now, well – as the Reaper pointed out I thought I was dying anyway, why not?

Sooooo I launched a new layer to my ruse sharing with my daughter that in case she noticed me acting ‘bat shit crazy’ that it was OK, I was starting Chantix to quit smoking as a New Year’s resolution.

We actually shared a well needed laugh as she reminded me of my more memorable ‘hall of fame wiggy moments’ during some of my previous unsuccessful attempts to quit over the years.

However I never got wiggy. In fact Chantix worked so well that in the first week where you are supposed to continue to smoke while the drug rewires your brain or something, I could not finish a pack of cigarettes. I had absolutely no desire to smoke. … I enjoyed smoking for decades and here in less than a week I was unable to smoke. --- Strange but true!

Nor did I use the suggested dosage or take for the suggested time, as I found it difficult to sleep taking Chantix twice a day. I still have no desire to smoke but truth be told I do enjoy walking slowly by smokers J

I doubt the above is the kind of real Chantix story you will ever see on a TV commercial but I, for one, will raise a personal toast to Chantix this New Year's Eve and a year without smoking. 

related: quitting smoking is not going to cure lung cancer

Patrick Leer
Caregivingly Yours, MS Caregiver @

Thursday, December 27, 2012

The First Christmas of Overtime

Most mornings as a lung cancer survivor I wake up more like an older version of Springsteen’s proverbial traveler of New Jersey Highway 9
I’m just a scared and lonely rider
But I gotta find out how it feels”

Maybe it’s just a guy thing but for me trying to actually ‘survive’ or ‘outlive’ lung cancer, well … to me it’s more like ‘overtime’ in a playoff sporting event.

I am damn grateful I am even in the playoffs – way too many are not, but in overtime I can’t leave anything on the field I may not get another chance. 

Sooo following Thanksgiving holidays I resolved to change. “Insanity: doing the same thing over and over again and expecting different results,” is never truer than dealing with dementia. My wife Patti’s Multiple Sclerosis disabilities, specifically dementia, is never going to allow her to remember any family holiday gathering no matter how hard I try over and over again to involve her and it does get harder holiday after holiday. 

… On the other hand I will remember and more importantly our daughter will remember. … Rather than ‘expect’ different results it was time to ‘create’ different results.

I’ve been planning for weeks for this First Christmas of Overtime to be different. Then as if by fate the unbelievable happens and it snows on Christmas Eve?  After shoveling sidewalks and driveway I settled down for a short winter's nap.

Sooo with Patti safely asleep and cared for in her care facility, our adult daughter joined me taking turns driving and storm running through the night with the Christmas Eve winter storm for 200 miles arriving in New York City shortly after dawn.

Insanity? Not counting snow plows or Santa’s sled we saw four other vehicles out on the roads with us for the majority of our drive.

My first Christmas gift was early bird parking in midtown Manhattan for only $16 for all day.

First on my quest list was a bag of roasted chestnuts which I enjoyed in Central Park while watching a doggie fashion parade of early morning dog walkers. Did every dog in Manhattan get a new sweater for Christmas?

Drifting down 5th Avenue we checked out the holiday window displays. They are sadly not what I remember from days of yore when it was all such a part of making Christmas before malls, and Internet and what not.

St. Patrick’s Cathedral took a moment to recognize ‘gift wrapped’ in construction scaffolding for repairs and restoration. We stepped inside for a bit of Sunday Mass after all Christmas Day is about Christ … plus truth be told, I wanted to say thank you.

It was mesmerizing to see every street vendor and most stores and restaurants open for business on Christmas Day. Then again it is NYC and we were right there at Christmas central - Rockefeller Center!

The genesis of this trip was to create a memory for my daughter and myself, part Christmas present part first Lung Cancerversary present. Skating became an unexpected pre-school bond between us twenty years ago. Patti who could previously skate was neutralized by MS progression. Megan’s interest quickly developed into a knack rising to free style and I abruptly at age 40 had to learn to skate quickly and advanced (yes, I even earned an ISI Delta patch :) ) to keep up with her. Ice skating on Christmas Day at the Rink at Rockefeller Center seemed a 'jump the shark' memory. She is the unseen better skater videotaping me while skating.
Originally I had agonized over making VIP Express Skating Reservations, but ohhh it was worth it. Neither a single moment of anxiety nor time was involved in waiting to skate. We maximized every minute of our morning in NYC and then just showed up to skate at the Rink on Rockefeller Center. The VIP tent was an absolute treat with unlimited hot chocolate, bottled water, candy canes, fresh baked cookies, and candy cane bark. While we sat down on padded benches in the warming tent to enjoy the amenities our skate concierge brought our skates, secured our shoes and bags bringing us a claim check. … Skating in and out of the VIP igloo tent for hot chocolate breaks during the 90 minute skate was luxurious!!!  

The bottom line is that memories of a fun time together are priceless in a year that included 20 seconds flat-lined, diagnosis of lung cancer, and successful lung cancer surgery.  IMHO ‘lung cancer survivors’ are not just the person with the diagnosis.

Leaving Christmas Central it was time for the epicenter of tacky - Times Square, and it did not disappoint. Costumed characters from Spongebob to Elmo abounded for Christmas Day photo ops. However I was lured to Hyndai’s interactive digital Billboard that projects you onto a Times Square Billboard. While I charged up, jostling and shoving my way forward and up the steps through an absolute Tower of Babble of foreign visitors, unbeknownst to me Megan using her brain stalked the edges of the crowd – so as I prepared to snap my picture of me on a Times Square Billboard there suddenly was Megan (who had been dodging photos all day) looming larger and clearer than me – priceless. 

This called for some fine NYC street cuisine – a hot dog with onions, sauerkraut, and hot deli mustard!

Before heading home we had the chance to just drop in and surprise cousins in Northern New Jersey on Christmas Day.  Surviving sure feels different when you visit with a breast cancer and liver cancer survivor and their families ... more like surviving cancer "r" us. The gods were with us as we arrived just before the arrival of the youngest and that absolutely quintessential moment of Christmas the wide eyed opening of presents.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Sunday, December 23, 2012

first lung cancerversary

It was one year ago today I got the phone call from my Nurse Practitioner informing me that my x-ray following my annual physical had found a “9 mm suspicious nodular density” in my lung.

I had just picked up my wife from her care facility in our wheelchair accessible van for an outing. She was sitting right next to me and I had to fake my emotions and much of the conversation before pulling over. Stepping out of the van to collect myself I asked that momentous question, “How long do I have to live?”

My nurse practitioner would be the first to stonewall that question but I’ve long forgiven her because well, I’m writing this today a year later because she was raising the bar on her professional skills bringing screening and by default early detection into annual physicals.

I earned an Oscar in my opinion last year acting all through my fist 'last Christmas' and the holidays informing no one of my health and concerns of dying. In fact with the exception of our adult daughter I informed no one until after successful surgery almost three months after the call.

Speaking of screening and detection, just today I open a letter denying my upcoming rescheduled CT scan - apparently it’s too soon. Two months ago my second follow up CT scan was ‘inconclusive’ since I had a chest cold at the time.

Reading the letter I hear the lawyers and bean counters not the physicians. … my insurance would have paid 100% had my rescheduled CT scan occurred before the end of the year.

Follow up CT scans are suggested every 4 months for the first two years following treatment for lung cancer. Due to a good old common cold I’ve only had one readable scan in 9 months since surgery.

Unless I win a lottery I can't see many more 'suggested' CT scans in my future, I am still paying off 2012 deductibles.

One year ago my question was “how long do I have to live”. 

One year later the question is about money. 

Whatever, there are no answers tonight. It’s time to celebrate my first lung cancerversary and raise a cupcake to that original X-ray and encircled “suspicious nodular density. "Hasta la vista, baby!” 
Patrick Leer
Caregivingly Yours, MS Caregiver @

Friday, December 21, 2012

Twas the night before ‘Cliff’mas

While trying to out-live a ‘recalcitrant’ cancer I find it damn difficult sometimes to watch elected representatives treat it like a bone of contention.

Facing ‘last stand’ obstacles from whiny scientists at NIH who do not like their research directed by “we the people” to a threatened ‘hold’ by a lone Senator … U.S. Senator Sheldon Whitehouse (D-RI) maneuvered the Recalcitrant Cancer Research Act of 2012 which had passed the House of Representatives unanimously with bi-partisan support earlier this Fall from an at-risk stand-alone bill to an amendment to the National Defense Authorization Act.

Now the ‘amended’ National Defense Authorization Act goes back to the House of Representatives for approval of changes.

Why does it even matter? It redirects the previously funded federal research by the National Cancer Institute to target the "most deadly cancers" while adding zero cost to the budget. Priority status given to pancreatic cancer (5 yr survival rate = 4%) and lung cancer (5 yr survival rate = 15%). Plus it's personal ... 
Why does it matter NOW? In parliamentary terms, it’s ‘old business’ of the 112th US Congress which ends on January 3, 2013. If not signed into law by the President before then the clock resets to scratch on legislation that has been years in the works.

As frustrated as I may get ‘watching’ this, I do want to give a Christmas shout out to Senators Sheldon Whitehouse (D-RI), Carl Levin (D-MI) and John McCain (R-AZ) for standing up and believing in survival.

Now like everything else, forget the Mayan calendar, the better question is what and who among us will survive the Obama/Boehner ‘Cliff’mas holidays? 

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Tuesday, December 18, 2012

a birthday with many hats

my original 1st birthday
Today is a bit more than just ‘another’ 39th birthday it’s also my 1st birthday since successful lung cancer surgery.

I did not even know such birthdays were possible almost a year ago, so yeah this one is ‘special’.

Started the day with a brisk Birthday 5K Walk that started in morning fog yielding to beams of sunlight before a rude rain cloud blew through with a finale of windy rain.

Of course it was also my 23rd birthday as a Multiple Sclerosis spouse caregiver and sooner than later any day has got to be viewed through MS 'symptom D' glasses ... 

Patrick Leer
Caregivingly Yours, MS Caregiver @

Monday, December 17, 2012

a tale told by an ornament ...

For obvious reasons it seemed pragmatic to encourage our daughter and my wife to decorate the Christmas Tree this year. Statistically speaking it could be their future tradition.  

Helping Patti who is non-ambulatory and legally blind from Multiple Sclerosis is really about decorating the tree oneself and trying to find ways to keep Patti involved and engaged.

When they got to Patti’s “Christmas at Penn State” ornament featurning Joe Paterno (Patti is a Penn State alumni) …

- “Why do we have an ornament of a pedophile?” from a ‘20 something’ with no Penn State allegiance.

- “That’s Joe Paterno he’s no pedophile he’s the Nittany Lions football coach” from Patti. (Patti’s MS dementia symptoms prevent retention of any recent memory – for example she does not even remember I have lung cancer)

My God, I think to myself, I’m going to have to live forever just to explain the ornaments. A year ago as I helped Patti by hanging this same damn ornament I did not know a 8 mm spiculated nodule was living in my left upper lobe.

So I weigh in to offer a new piece of family Christmas lore. “Speaking of Joe Paterno …” believe it or not, he even played a role in my lung cancer diagnosis.

Beginning on Dec 23 last year not only was I keeping my scans and appointments secret but my only question was “how long do I have to live?”

Looking through my PET scan in January 2012 my then pulmonologist points out to me that today lung cancer is treatable unlike the past.

Seeing the suspicion in my eyes, he pulls Joe Paterno out of the news as an example of an 85 yr old man under unimaginable stress while being successfully treated for lung cancer.  

Two days later Joe Paterno died from lung cancer. You can imagine how encouraged I felt.

Later that night watering the tree stand supervised by our cat an ornament fell from the tree landing between Stardust and me. Yep, believe it or not, there laid JoePA as Stardust looked at me with a telepathic “see I told you so, they fall from the tree all by themselves.”

Patrick Leer
Caregivingly Yours, MS Caregiver @

Monday, December 10, 2012

Quitting smoking is not going to cure lung cancer

“Quitting smoking is not going to cure lung cancer;
research dollars will.” LUNGevity

As my lung cancer odyssey began I felt guilty because I was screened as part of a yearly physical and my lung cancer was detected early while treatment options were at maximum – because I was a smoker.

Almost a year later the more I learn the more angry I get that more are not eligible for early screening and detection.

Five Year Survival Rates ... Little Progress for Lung Cancer
I am angry that the stigma of lung cancer as a smoker’s disease may cause ‘never smokers’ to be misdiagnosed. Nearly 80% of new lung cancer cases are never smokers and former smokers.

I am angry that stigmas delay treatment! – With symptoms usually only appearing in more advanced cases, 50% of lung cancer is diagnosed after the cancer has metastasized (Stage IV).

At risk of oversimplification because I was a smoker my lung cancer was detected so early it was operable as Stage I without any radiation or chemo.

Nor does this early detection and surgery mean I am cured. Unfortunately lung cancer recurrence is far too common and recurrence is more ‘bad ass’ than the original. … Improving chances are about research.

Estimated 2011 Federal Research Dollars Per Cancer Death
I am angry that the self-righteous short change critical research money because of the stigma of smoking.

Thirty years ago a self-righteous band played on while I buried too many friends and coworkers because of the stigma of AIDS.

Don't the self-righteous ever get tired?

Virtually none of the $246 billion in tobacco settlement money is going toward lung cancer research while at the same time an increasingly toxic world is being considered as an afterthought to cigarettes.

The President of the United States quit smoking sometime in 2011 after 30+ years. I began Chantix in late 2011 and quit smoking after 40+ years.

Kudos to us both; however, the buck does not stop here. Quitting smoking is not going to cure lung cancer … for those 1 in 14 Americans who will be diagnosed over the next 12 months … and for the family and friends of the 160,000 who will die over the next year – lung cancer does not give a damn whether you ever smoked or not. 

(Graphs copied from original LUNGevity article and based on - estimated federal spending from the combined FY2011 research dollars of the National Cancer Institute, Department of Defense, and Centers for Disease Control and Prevention. Estimated cancer deaths from the American Cancer Society: Cancer Facts and Figures 2011. 5-year survival rates by year of diagnosis from the SEER Cancer Statistics Review 1975-2009, posted in 2012.)

Patrick Leer
Caregivingly Yours, MS Caregiver @

Wednesday, December 5, 2012

a lung cancer Christmas

“Holiday shopping tips for lung cancer patients.” Really? Obviously when I awoke from anesthesia earlier this year I awoke on an alien planet. Is everyone who is diagnosed with lung cancer wealthy? I am still paying off my medical insurance deductibles.  

“You’re not feeling so jolly this holiday season?” At last someone from my home planet! Grateful – YES! Holly, jolly – not really!

Reading suggestions about spouses or significant others taking care of this or that or lightening holiday stress is … well, it’s fiction on my planet. Am I the only spouse caregiver ever diagnosed with lung cancer? What about single people diagnosed with lung cancer what are they supposed to do?

Googling on I discover sites for lung cancer Christmas cards, lung cancer ornaments, and how to get 2012 Christmas Seals®. ... and realize I'm developing bigger issues than lung cancer because I'm starting to sing and dance in my chair to ABBA, "All the things I could do - If I had a little money - It's a rich man's world." 

Just when I was about to dismiss most of these pages of tips on coping with lung cancer and the holidays as written by alien psychobabble bobble head dolls, I found one which makes sense, to me, written by a psychiatric oncologist at Massachusetts General Hospital Cancer Center, “Coping with Cancer at the Holidays”.

"...Acknowledge where you are
    During the holidays, it’s hard to break out of traditional roles. … you might be unwilling to admit that things are different this year…

It’s important to recognize:
·      The financial burden of cancer: Time away from work, prescription costs and other lifestyle changes during treatment may make this a more difficult year financially.
·      Cancer can put an enormous strain on personal relationships, which can be emphasized at the holidays.
·      Fear of recurrence or worsening condition … because the future is uncertain.
Reframe expectations and reshape traditions

To get the most enjoyment out of this holiday season, try to:
·      Reframe your expectations: … Put yourself first
·      Rethink traditions: There is no “right way” to celebrate.
·      Reassess gift-giving: Make things easier by scaling back
Use healthy living to manage stress: regular exercise and sleep..."
Last year I received the phone call that would alter my life the afternoon of Dec 23rd. Yeah I was lost, confused, angry, scared and more but concealed my health issues and anxieties while dutifully acting as my wife’s spouse caregiver enabling her participation in her family Christmas.

Once an aficionado of all things Christmas, I confess a ‘lung cancer Christmas’ was never on my life’s radar … likewise I confess that I’m grateful to be knockin’ on Santa’s door instead of knockin’ on heaven’s door. “God bless us, every one!"

Patrick Leer

Caregivingly Yours, MS Caregiver @