Thursday, August 30, 2012

why the asbestos questions

Filling out paperwork then answering questions dominated the earliest stages of my lung cancer diagnosis and pre-treatment. I had never had a reason to sit down with a pulmonologist or oncologist or thoracic surgeon before in my life.

Frankly much blurred together, forms were basically the same; offices decorated innocuously, questions asked in that medically neutral professional voice … with one curious exception the word, asbestos. I kept being asked about any history with asbestos. (If it wasn't all so cancer-somber it actually reminded me of the ultimate seemingly incongruous line, "One Word: Plastics" from the movie The Graduate.)

Between surgery, recovery, and learning to live with survivorship I had not given that word much thought until I got an email from Kelsey Rathbun with Public Outreach at The Mesothelioma Center asking if … 
“Maybe you can help us spread mesothelioma cancer awareness …”
Her email also jogged my memory about my thoracic surgeon mentioning Pinnacle Hospital launching a program earlier in the year offering free lung cancer screening for 100 area Firefighters. Exposure to asbestos I was told is an occupational hazard for many professions including 'first responders' and increases the risk of lung cancer and mesothelioma (a word that at the time went in one ear and out the other because it did not apply to me personally).

What’s the difference and why does it matter? Click and read, personally I find starting with first person stories from those surviving or caregiving – a better place to start.
Mesothelioma Center Wall of Hope - Mesothelioma Survivors
Patrick Leer
Caregivingly Yours, MS Caregiver @

Tuesday, August 28, 2012

Free To Breath Lung Cancer 5K Run/Walk Harrisburg

This past weekend, I participated in a Free to Breathe Lung Cancer 5K Run/Walk 2012 on City Island in Harrisburg, PA. Most importantly I was struck by the passion of everyone involved.

During the rally beforehand, speakers often breaking with emotion shared their reasons for families running or walking to honor members lost to lung cancer along with teams of ‘20 somethings’ rallying in support of a friend unable to attend while battling for their life. …. The morning belonged to those who had been brought together by loss or heroic struggles just to see this morning.

Listening as a survivor I could not help but feel moments of wondering why am I so fortunate, or ‘survivor guilt’, and was tempted to slink into shadows however a toxic/mucus green shirt emblazoned with survivor is not the best of invisibility cloaks.
collage of pictures from Free To Breathe Lung Cancer 5K Run/Walk 2012 Harrisburg, PA on City Island, August 25

What was important was that 440 people, yes mostly touched by the loss of someone to lung cancer, came together and raised $34,000 to benefit "cutting-edge lung cancer research, educational programs for patients, advocates and healthcare professionals, and public awareness-raising programs"

If anything with increased awareness, increased screening and earlier detection, hopefully my odyssey will get crowded.

I have never been a runner and lung cancer surgery did not miraculously turn me into one. At 61 and a lung cancer survivor, I was however more than happy to finish the 5K Walk with not only less lung but less than a handful of walkers ahead of me.

by Patrick Leer
Caregivingly Yours, MS Caregiver @

Friday, August 24, 2012

never underestimate a science fair

Never ever underestimate your local school science fair your life may depend on it.

Earlier this year Jack Andraka, a 15 year old US high school student, was acknowledged for inventing an advanced test “to detect pancreatic cancer, ovarian cancer, and lung cancer all in their early stages” – and credits in large part the search engine Google.

Reportedly his test is 168 times faster and more than 26,000 times less expensive and 400 times more sensitive than the current gold standard in the field…. Even a newbie to surviving lung cancer like me knows that early detection is a game changer when it comes to cancer.

This three minute BBC interview is well worth your time to meet this young man.
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He was just "chilling out in biology class" when the idea came to him reports the eventual 2012 Intel International Science and Engineering Fair winner. From interviews I noticed his motivation was the loss of a family member to pancreatic cancer.

At the risk of opening a can of worms here, it seems to me that personal passion can drive invention further than Big Pharma may ever consider, especially when improving detection reduces costs.

Jack, thank you!

by Patrick Leer
Caregivingly Yours, MS Caregiver @

Tuesday, August 21, 2012

Lung Cancer 5K Run/Walk Harrisburg

Not pushing my wife’s wheelchair for the MS Walk 2012 this past Spring felt emasculating. Yeah I was recovering from lung cancer surgery but we all know the old adage, ‘excuses, excuses’.  

Meeting with my thoracic surgeon after my 4 month follow up CT scan from lung surgery I first became aware of Pennsylvania Lung Cancer Partnership’s Free To Breath Lung Cancer 5K Run/Walk  Harrisburg, this upcoming Saturday morning.
Awareness and fundraising events have always been about my wife’s Multiple Sclerosis. After decades pushing her wheelchair did I suddenly want to get involved in something about me? I was in no position to try fundraising I am still trying to pay my medical insurance deductibles. So why?

Meeting others like me would be nice. We must be somewhere. I know from MS Walks the ‘if only for a couple hours’ feeling my wife gets when MS is the reason people are there and not the reason they are not.

Reading the Pennsylvania Lung Cancer Partnership’s web page I realized I have to and I kind of have to ‘now’ – of their seven on line “Inspirational Stories of Strength” only four remain alive battling lung cancer and of their four “survivor blogs” two bloggers have died in their battle with lung cancer and the remaining two have not been heard from in over half a year.

That is the point of all this. There are far more survivor stories that end shorter than others. There are far more people affected by losing someone to lung cancer than by surviving lung cancer. This has to change.

Thanks to early detection by my PCP, Nichole S. Scicchitano, MSN, CRNP of Blue Mountain Family Practice (PinnacleHealth) and successful surgery by my thoracic surgeon Troy Moritz, DO Cardiovascular & Thoracic Surgery, PinnacleHealth, I was able to even begin my lung cancer odyssey to find out just what I am really made of.

Plus the near daily 5K training walks have just been icing on the cake of life.

related entries: Free To Breath Lung Cancer 5K Run/Walk Harrisburg

Patrick Leer
Caregivingly Yours, MS Caregiver @

Saturday, August 18, 2012

sometimes it gets noisy in my head

‘Survivorship’ is a label I was given following surgery but each day I live I’m learning that those ‘surviving’ lung cancer wage war for each day. There are not enough synonyms in a thesaurus for heroic when it comes to describing their battles with chemo, radiation, clinical trials, and additional surgeries.

There are days I wonder if I have that kind of future fight in me. Yes, there are also mornings I do wake up energized and grateful that at least for today my living with lung cancer will only be an inconvenient obstacle.

I try to embrace each morning grateful but as a long term Multiple Sclerosis spouse caregiver mornings are lonely and more about organizing responsibilities than dreams. Advocating for a spouse who cannot rather than thinking of myself. How to pay for today, more than planning some exciting plan for next week.

lung cancer survivor baseball cap
Why do people without cancer feel a need to share that “we” could die in a car accident tomorrow, or have a heart attack? "We" have not seen them or been in the same car since diagnosis. Or conversely, ‘everything will be OK!’ Don’t think about it! … or in other words, 'They' don’t want to talk about it.

As for me I would love to not talk about it, I would love to not even think about it but sometimes it gets noisy in my head like opening a refrigerator or pantry and the expiration dates all yell out at you.

450 people die every day of lung cancer in the US  alone, essentially that is the equivalent of an airliner crashing and killing everyone on board every day of the year – in what universe is this daily 'activity' acceptable?

by Patrick Leer
Caregivingly Yours, MS Caregiver @

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Monday, August 13, 2012

lung cancer advocacy by the numbers

Seeing this picture on Facebook this morning of US Olympic Athletes wearing Jill’s Legacy "Beat Lung Cancer" bracelets at the closing ceremonies started my Monday with more than a smile.
picture of US Olympic Athletes wearing Jill’s Legacy Beat Lung Cancer bracelets at closing ceremonies 2012 Olympic games in London
Watching the closing ceremonies last night unquestionably I had to push the math out of my head several times as the announcers belabored “in four years” and so on. Thank you Jill’s Legacy for posting – better than coffee this morning!

Just a couple weeks ago meeting with my thoracic surgeon following my four month CT scan I discussed wanting to do something about lung cancer awareness.

My surgeon pointed out that while survivor advocacy is more than welcomed for lung cancer it has always been challenged contrasted to other cancers or chronic illnesses because of frankly the math.
comparison of survival rates between prostate, breast, and lung cancer
Pennsylvania Lung Cancer Partnership amplified those numbers with this recent Fast Fact Friday chart from their Facebook page.

Hopefully increasing awareness begins a snowballing trend to earlier screening and detection, better options for surgery and treatment, better research and best of all … more survivors.

Though I personally would like to give an awareness shout out to long term caregivers everywhere, the necessity of decades of stress and neglecting one’s own health has consequences. Stress diminishes the immune system and increases chances of cancer and chronic illness.

As a Multiple Sclerosis spouse caregiver of 22 years I know the math of caregiving and long term caregivers are increasingly dying before the family members they care for.

lung cancer survivor baseball cap
While recovering from surgery I bought this hat from Zazzle (hint: not one lung cancer organization sells any such 'survivor' stuff, unfortunately they better than anyone know the numbers). Any way simply wearing it in public can trigger spontaneous conversations in check out lines, store aisles, you name it – anywhere someone can read it and ‘wants’ to share how lung cancer affected their life.

What continues to amaze me is that while the math of survivor advocacy is rare to say the least (I have only met one other survivor because of the hat), on the other hand the math of the number of lives affected by lung cancer is seemingly everywhere.

Patrick Leer
Caregivingly Yours, MS Caregiver @
My Lung Cancer Odyssey @ 

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Friday, August 10, 2012

lung cancer is an inconvenient obstacle

Support, support, support seems like the lung cancer variation of the old real estate maximum about location.

“The value of support and love of family and friends is THE single most important need that we all share.”

“Lung cancer patients need support and understanding.”

“Cancer is hard and scary and daunting and all kinds of tough stuff.  Going it alone? …  It’s better together.  Really it is.”

What if … such support just isn’t going to happen. My wife’s cognitive and/or dementia like symptoms of Multiple Sclerosis are so progressed she lives in her ‘now’. She does not remember yesterday or last week any better than a moment ago. Frankly I have given up reminding her about my own diagnosis of lung cancer.

When you have spent almost a quarter century pushing your wife’s wheelchairs for over 5,000 miles (8,000 km) lung cancer is a damn inconvenient obstacle.

by Patrick Leer
Caregivingly Yours, MS Caregiver @

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Wednesday, August 8, 2012

terrible ifs of lung cancer diagnosis

Every time I begin to type I feel “I am not worthy” contrasted to  blogs by others surviving lung cancer in terms of years but then again I pray there will be many more like me in the future beginning survivorship with growing lung cancer awareness.

When this began for me seven months ago just days before Christmas with that call following my chest x-ray, I went immediately to ‘how long do I have to live’. Anyone and everyone I ever knew who had lung cancer died and died soon.

“How long?”, remained my primary question through the first two months of tests, biopsy and appointments.

In retrospect it really was kind of nuts how long it took for the medical profession to catch up to where I already was. I ‘knew’ at the first mention of “vague nodular density” that I had lung cancer. It took medical science another 8 weeks to catch up.

"The terrible ifs accumulate" Winston Churchill wrote reflecting on a failed WWI British military campaign. Mix in a lung cancer diagnosis with the Internet, imagination, tall tales, and fears and those terrible ifs accumulate exponentially.

Tossing and turning through sleepless nights with my new BFF the Grim Reaper I would finally fall asleep only to shoot up awake to the sound of banshees (maybe owls, or morning doves) or the rumble of death coaches (possibly the trash truck) … “how long” was driving me mad.

My nurse practitioner warned me to be careful using the Internet but I could not resist I was sucked into a growing universe of ‘terrible ifs’ as I typed in each test result.

By the time I got to the thoracic surgeon and oncologist level of appointments my lung cancer had taken over my mind.

picture of Patrick in baseball cap with lung cancer survivor printed across the cap
‘How long do I have to live’ was instead answered by lung cancer discussions such as my personal health plus early detection and type of lung cancer created options such as operable, treatable, and survivorship. No promises, no guarantees but if you want to fight you can.

How did I miss that ‘if you want to fight you can’ while accumulating those terrible ifs?

by Patrick Leer
Caregivingly Yours, MS Caregiver @
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Sunday, August 5, 2012

can I afford to survive lung cancer?

‘Take every day as a gift’ I read or hear from many but personally I find myself wondering can I afford the gift tax on surviving lung cancer?

Yes! I am grateful to be alive but I am also left dancing one step ahead of my economic grave every day, and I have health insurance.  Months of lost work from recovery from lung cancer surgery plus appointments and tests (both 'outpatient' procedure biopsies resulted in me being hospitalized) does not equal income. I am still trying to juggle paying the deductibles from my medical bills. If anything I could teach President Obama new techniques for deficit spending.

“Families may be one accident, injury, or diagnosis away from bankruptcy," U.S. Senator Sheldon Whitehouse (D-RI). Our family is facing its second – my wife has lived with a quarter century of severe Multiple Sclerosis and now my Lung Cancer.

Double income, working spouses and/or lack thereof along with other family economic factors unquestionably affect the ability to take every day as a gift.

The more I read of lung cancer survivors I was feeling more and more isolated from people who were able to focus on fighting for their lives rather than swamped trying to pay their bills until I discovered lung cancer survivor Gary Kane writing in Google+ and/or his blog bandtogetherforgary 
“...From cousins and family friends who have donated thousands of their hard earned dollars to help us pay our bills while at the same time paying their own during these difficult times, to an old college roommate who I haven't seen for years donating his hard earned money, to my in-laws, (all of them) donating money, food, time, and support...”
Writing from Massachusetts, home of the much ballyhooed near-universal health insurance coverage his words are perhaps even apocalyptic of what a lung cancer diagnosis can mean.

Beginning this odyssey I am learning quickly that surviving lung cancer seems to be about surviving a whole lot more than the diagnosis.

As a spouse caregiver I’ve tried to live my life with a stoic indifference to my own existence. I’m finding during sleepless nights that adding my lung cancer odyssey to the mix of things to somehow juggle seems increasingly quixotic. 

by Patrick Leer
Caregivingly Yours, MS Caregiver @

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Friday, August 3, 2012

The Great Lung Run

A self-described “more or less your average twenty-something”, Kelcey Harrison started July 29th from Times Square in NYC to run 3,500 miles to San Francisco to honor her childhood friend who lost her life at 22 to lung cancer.

If you have lungs you can get lung cancer …
Follow Kelcey’ quest to raise awareness and raise funding for lung cancer research …
Or Email:

Check out her route on her website, "Let me know if you can join me for a portion of my journey to run, bike, drive, dance or skip for a few miles! " ... also if you or someone you know can host her for a night or sponsor her by booking her a room in route.

The Great Lung Run from Sunduko on Vimeo.

IMHO this young woman is anything but an average twenty something.

Patrick Leer
Caregivingly Yours, MS Caregiver @

Thursday, August 2, 2012

recovering from lung cancer surgery

The more I read the more I realize what a rookie I am at being a survivor so better to stick to sharing rookie topics like recovering from lung cancer surgery.

Pre-surgery I was given a pamphlet “Lung Surgery” by Krames Communications to read and prepare myself for both surgery and recovery. Fascinatingly I was told consistently and universally by anyone and everyone to ignore everything in the pamphlet.

Surgically I had a “VATS left upper lobe wedge resection, mini-thoracotomy with mediastinal lymph node dissection” except that when reaching in for lymph nodes surgeon needed to do some rib retraction and basically what pain I had through recovery was all about ribs.

Personally I had felt fine before surgery with no symptoms and no need for radiation or chemo. Transitioning from arriving for surgery feeling 100% to leaving the hospital like I had been beaten was dramatic.

I was sent home with my pamphlet to ignore and a RX for 30 tablets of Oxycodone 5 mg. I still have 3. Every hour of every day pain did lessen, by the third week I was down to 2 ibuprofen a day.

Following my post op instructions to lift nothing more than 5 lbs religiously, I never put surgery or sutures under excessive stress or at risk of lung hernia. As a result my pain remained exclusively rib pain.

Coughing was knock me to my knees painful. Inadvertently I learned that grabbing / hugging door jams or corners of walls somehow reduced the pain of coughing.

Fortunately for sleep I primarily sleep on my right side and surgery was on my left upper lobe. Yet the littlest roll could wake me with a bolt of pain. Then I remembered one nurse’s aide in the hospital taught me a trick of wedging my torso in place with pillows when I was ready to sleep preventing my body from changing position while asleep. It works better than pain meds.

People say "try sleeping in a recliner" which I tried exactly once – not only was it beyond painful to get in and out of but our cat decided to jump up on me, better yet jump up on my ribs which set new standards for rib pain. I personally would not recommend a recliner.

I did find that positioning a sturdy chair within reach of the bed was most helpful for getting in and out of bed.

Each daily shower I extended my left arm (surgical side) one tile higher on the shower wall to test range of motion. One vivid benchmark was that first morning that I could extend both arms high enough to use both hands to shampoo my hair. Weird considering I should be grateful for the lung cancer surgery but being able to shampoo my hair again with two hands was a morning I treasured.  

Remembering that athletes wear flak vests after rib injuries I found my faux-down vest and began wearing it like a recovery uniform. The vest revolutionized sitting in chairs and especially riding in cars, though by May it was looking a bit strange in public.

Riding in cars at first was brutal. I created pillow nests for riding. By the time I was ready to try driving I had discovered the down vest trick.

Lifting restrictions (no more than 5 lbs) was in retrospect one of the more challenging recovery tasks. My adult daughter gets the credit for my success here. Grocery shopping, lawn mowing, vacuuming, etc … you do not even think about how many household tasks are in excess of 5 lbs and having to give them up for 6 – 8 weeks.

Six weeks to the day after surgery and cleared by surgeon I returned to Planet Fitness and completed a full circuit on strength training equipment (my surgeon suggested starting below pre-surgery levels and add 10 lbs a day) and walked 2 miles on the treadmill.

My recent 4 month CT scan shows there is still a small fracture of one rib but it does not hurt, just some intermittent numbness, and who wouldn’t trade a small rib fracture for no evidence of lung cancer. 

Patrick Leer
Caregivingly Yours, MS Caregiver @

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