Saturday, July 28, 2012

Exercise and Lung Cancer Survivorship

Walking was the only exercise I could do when first discharged from the hospital after lung surgery four months ago.

In the hospital I believe I set new frontiers for post-op walking. However I was accompanied by my new best friend a magical epidural in my back and I have no doubt I could have scaled the hospital if I wanted.

Then came the third day and they removed the epidural and chest tube – well, I have never felt so beat up. Each step was a challenge.

At home I vividly remember my first walk to the end of the block and back. Trying to convince my daughter I could do it unattended and compromising if I took my cell phone.

Before the first month of recovery was over I was up to three miles a day.

Reading “Exercise, in other words, made it less likely that a survivor would subsequently die from a recurrence of his or her cancer”  in the New York Times, well … was certainly motivating and if you can’t believe the New York Times what can you believe? Cancer Survivors Who Stay Active Live Longer 
Soooo in RealFeel® 100˚F (37.8˚C) temps and under the dark clouds of approaching severe thunderstorms it was time to begin some serious training for the Lung Cancer 5K Walk just 4 weeks away that I had previously mentioned noticing in my thoracic surgeon's office. Escorted by dramatic lightning for the last mile, I took as a good omen. 

by Patrick Leer
BLOGS:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

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Monday, July 23, 2012

from inches to miles

Maybe it’s just because I’m new at this diagnosis of lung cancer but it sure feels almost tidal. Some days are up, some are down. From inches to miles two rote behaviors anchor me when lung cancer swamps me.

… from inches
Nearly a quarter century of MS spouse caregiving has taught me the critical need for always requesting and maintaining personal copies of all tests and records. What began as a folder with my copies of scan reports now is a three ring binder of scan reports, blood work, appointment notes, surgery and hospitalization records, and of course pathology reports. In addition to paper, CD’s and DVD’s are secured in pockets in the binder. … As the inches grow I feel at least a sense of order holding something tangible in the chaos.

… to miles
Losing weight on the South Beach Diet, eight years ago, I began a routine of walking two miles a day. Recovering from lung cancer surgery walking was the only exercise I was allowed. At first limited distance and no steps, then after a week my surgeon cleared me to walk all I wanted. Wanting to do something to challenge myself during recover I extended my daily walks to three miles a day while listening to audio books on CD.

Waiting in my thoracic surgeon’s office I noticed a table tent advertising a 5k (3 mile) Lung Cancer Run/Walk on City Island, one of my favorite places. Maybe it’s time to do some walking with and meeting others like me.

Reading a recent entry from the blog, A Flying Elephant Living in the Land of Lung Junk I felt like Teri was reading my mind, “Cancer is hard and scary and daunting and all kinds of tough stuff.  Going it alone?  That’s major suckage on top of major suckage, if you ask me.  It’s better together.  Really it is.”

by Patrick Leer
BLOGS:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

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Saturday, July 21, 2012

lung cancer survivor blogs

Two days ago my lungs showed no evidence of cancer on my 4 month post surgery CT scan. My emotional and mental health was feeling pumped up for the first time since I heard that phrase “vague nodular density” 7 months ago.

Then I started surfing the Internet and reading lung cancer blogs.

First let me say they are shared stories of mind numbing courage, heroic by any definition.

Yet I am also left wondering if optimism is the fool’s gold of lung cancer survivorship.

lung cancer survivor wearing a baseball style hat emblazoned with lung cancer survivor
It only takes one story of someone else who had successful stage 1 lung surgery only to later discover themselves battling stage 4 in both lungs to deflate my ‘nouvel optimisme’. After reading a couple I had to look away. My survivor confidence is still fragile.

Looking back later and reading on I almost feel inebriated on inspiration.

Blogs are never either the norm or the exception they are the voices of those who choose to share. As I find active lung cancer blogs I list them in my sidebar.

A quarter million new families will receive a diagnosis of lung cancer just this year. Silence is not golden.

by Patrick Leer
BLOGS:
Caregivingly Yours, MS caregiver @ http://caregivinglyyours.blogspot.com/

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Friday, July 20, 2012

waiting, reading and waiting rooms

Time spent in waiting rooms may be the least mentioned part of anyone’s testing, diagnosis, and treatment for lung cancer but for me when I felt I might actually hear life ticking away that time was priceless.

Indirectly my daughter (my faithful sidekick and emergency contact through most of the journey) and I become aficionados of waiting room lung cancer publications and materials.

Personally I can still appreciate a Highlights Magazine and even would have preferred one for a distraction especially when waiting for some appointments such as biopsy results.

Waiting on my most recent appointment with my thoracic surgeon, we found ourselves scanning through and soon discussing Patient Resource Lung Cancer Guide even commenting to ourselves that this 25 page magazine style booklet with glossy reinforced covers is the best we had read in the seven months of appointments.

Following the cover instructions … “FREE! Take one home.” I later Googled around and found:
Patient Resource Lung Cancer Guide     This new publication provides lung cancer patients and their loved ones with the details they need upon diagnosis. The guide is published in partnership with the International Association for the Study of Lung Cancer and all content has been thoroughly reviewed by medical experts who treat lung cancer patients. The information includes details regarding treatment options, staging & pathology, symptom & side effect management and the many advocacy and financial resources available.

Or, download an immediate PDF version of the brochure.

Knowledge empowers.

by Patrick Leer
Caregivingly Yours, MS spouse caregiver http://caregivinglyyours.blogspot.com/

Thursday, July 19, 2012

No Evidence of Disease (NED) maybe


NED may be the sweetest medical acronym I’ve ever met. No Evidence of Disease (NED) maybe.

Seven months ago, three days before Christmas, I got the phone call informing me of a vague nodular density in my lung.

My mind immediately went to the darkest corner of my imagination where everything and anything I thought I knew about lung cancer crawled to die while I pretended to smile through my last Christmas.

Yet here I am just 7 months later with only a small wedge removed from my lung during lung cancer surgery, no measurable loss of pulmonary function, no loss of physical abilities, no radiation nor chemotherapy required and today after my 4 month post-surgery CT scan I can add NED to my cancer timeline.

Yes of course a medical disclaimer is necessary.  I will be scanned again in 4 months and then again yearly to monitor for any return of cancer. There is not only a chance but an increased risk since I had a wedge resection vs a lobectomy

There are some ominous statistics about lung cancer survival. The past and even recent past has not created many success stories to be told.

In the now and in the tomorrow there can and will be more success stories. One voice at a time we can share.

Recently I reposted the earlier entries from my Multiple Sclerosis spouse caregiving blog. Entries about lung cancer like everything else were swallowed by MS caregiving. My lung cancer survivorship needed to stand alone, be heard, and be shared.

Why me? Why was I lucky? I held my Dad through the long night as he died of pancreatic cancer 15 years ago. I can easily tick off at least a handful of friends who have died of lung cancer through the decades.

Screening and early detection is absolutely how the formula for success begins in my story.  I had no symptoms then and I still have no symptoms. Yet today unlike 7 months ago I have no evidence of lung cancer, maybe. 

by Patrick Leer

Tuesday, July 3, 2012

no one deserves to die

“1 in 14 Americans will be diagnosed with lung cancer this year that is 12 of the average Facebook user's 172 friends. Of which only 2 will survive more than 5 years.”

I am one of those 1 in 14 Americans.

Will I be one of the few to survive more than 5 years?

“Many people believe that if you have lung cancer you did something to deserve it...”
The Lung Cancer Alliance recently launched a bold awareness campaign ... NO ONE DESERVES TO DIE

Help spread the word 

8 comments:
Judy at Peace Be With You said...
I hope you stick around for a very long time.
Patrick said...
Thank you Judy! I certainly hope to or at least make a lot of noise going out. Too many are dying of lung cancer. American Cancer Society sold it's soul. Fortunately other organizations are finally stepping forward to focus on saving lives.
FrankandMary said...
I find it interesting how popular it seemed to be for a while to blame smokers for their lung cancer.
I never hear people blame overeaters for their diabetes & heart disease.
Diane J Standiford said...
My grandafther was a good Methodist. He was a hard-working farmer who raised 4 children with his with, who died at age 56 in the early 1900s. My grandpa hated smoking and when he visited my smoking, divorced, stressed out mom, hid her cigs from him. He died in his 70s from lung cancer. My mom is 84 and still kickin'. When I got ovarian cancer at age 39, a nurse taking my blood pressure said, out of the blue, "This is not your fault." I teared up and later cried. I am not a crier and didn't know I had ever harbored such a thought, but I must have. Her words comforted me. What is it about cancer that makes us and others(?) place BLAME? The media? Anyway ovarian cancer has a low surival rate. Sixteen years and still here, you will be here too.
Patrick said...
Amen!
Patrick said...
Thanks Diane! I honestly have been stunned by some of the judgmental reactions to cancer and the people who just fade away. Of course, Patti and I are a bit more use to the fade away phenomena through decades of living with MS.
Anonymous said...
Irony is powerful when appropriate ...... 'cat lovers deserve to die' , ' crazy old aunts etc' .....
this is just plain stupid and offensive ....... cancer victims and their families are not amused
Patrick said...
Anonymous! Welcome and while I would never claim to speak for anyone besides myself and my family, I am one of the 1 in 14 diagnosed with lung cancer and edgy campaigns I doubt are meant to be amusing. The status quo must change - no one deserves to die.
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