my odyssey from lung cancer diagnosis through lung cancer surgery for Stage 1 in Mar 2012 to as of now, May 2013, trying to survive Stage 4 lung cancer with metastasis to the brain
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.
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
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 Centerseemed 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
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!”
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 theRecalcitrant 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?
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 ...
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.”
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.
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.
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.)
“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!"
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.
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.
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 …
.jpg "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")
health
lung cancer
harrisburg
pennsylvania
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.jpg "eating a bag of roasted chestnuts in Central Park")
.jpg "St. Patrick's Cathedral Christmas Morning 2012")
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.jpg "first cancerversary")
-001.jpg "recalcitrant cancers: pancreatic cancer and lung cancer")
.jpg "\"Christmas at Penn State\" featuring Joe Paterno")
.jpg "Estimated 2011 Federal Research Dollars Per Cancer Death")
.jpg "November is Lung Cancer Awareness Month, Rehoboth Beach, DE")
