Monday, April 29, 2013

lung cancer may connect us as bloggers ...

We are all so much more than the diagnosis of lung cancer that connects our blogs.

In my story, Caregivingly Yours, my wife was diagnosed with Multiple Sclerosis almost a quarter century ago. She awoke Thanksgiving morning 1989 unable to walk, and barely able to see or talk.

“Across the years of caregiving, I’d guestimate I’ve pushed Patti’s wheelchairs at least 5,000 miles (8,000 kilometers). …
As sweat stains your shirt you only need ask yourself - how many people do you know who will step in to push the person you care for up the hills and across the years?”

Any week I can mark 3 Multiple Sclerosis friendly outings with Patti from her care facility and 3 trips to Baltimore regarding my lung cancer on my kitchen wall calendar is a damn fine week of juggling spousal caregiving and my own health.
The above collage of pics were taken 24 hrs after my Endobronchial Ultrasound (EBUS) Biopsy on a sunny 75°F (23.8°C) two mile push and roll with Patti around Carlisle, PA ending at Helena's Chocolate Café & Crêperie for dinner.

Learning earlier today that EBUS pathology report would not be available to talk about today I found myself reflecting that lung cancer may connect us as bloggers and likely define the commonality of our endings but it does not define the stories of our lives.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Friday, April 26, 2013

I'm ALIVE!!!

Thank you to Dr. William Krimsky and his entire team with MedStar Franklin Square Medical Center Hospital in Baltimore you all are my new medical heroes and gurus.

It’s impossible to express how off the chart anxious I was about repeating this EBUS procedure. Greeting my daughter Dr. Krimsky pulled her aside looking for some ‘over under odds’ to bet on how many staff I had told this morning about flat-lining during an EBUS last Spring at PinnacleHealth Hospital in Harrisburg. He guessed a couple as Megan laughed “OMG, try dozens!”

Opening my man purse when I got home I found a signed thank you note from my surgical team, this kind of stuff never happens at least not in my life time.

Thirteen months ago I awoke from my previous EBUS to my daughter calling me to ask “Well, are you resurrected or a zombie?” and found myself imprisoned overnight on the cardiac unit in Harrisburg. This morning I awoke to the voice of Geliza the team’s Nurse Anesthetist telling me I can go home.

Dr. Krimsky had promised my daughter and I as quick an impression of ‘Bob’ as possible one way or another before turning biopsy over to pathology. My daughter took his "I'm 99% sure its cancer" hard, she was holding out hope for 'pissed off lymph node" as after all I have never demonstrated symptoms.

My "9 mm vague nodular density" was detected on a Dec 2011 x-ray for my annual physical, tumor was DX'd as Stage 1 and surgically removed from left upper lobe in March 2012 with no metastasis evident in surrounding tissue or left lung lymph nodes. My first follow up CT Scan in July was labeled NED (no evidence of disease). My second follow up CT Scan in November was compromised by a chest cold but sitting down with my thoracic surgeon he saw no tumors or suspicious areas, it's not bad news was his impression but neither was it good news and scheduled  a do-over scan for late Dec however that plan fell apart.

Dr. Krimsky also briefly spoke with me but I was still a bit groggy but do remember him saying it was not good. My patient discharge instructions show "diagnosis: mediastinal cancer."

In consideration of our 170 mile round trip ride. We have a phone appointment for Monday to review pathology report, what type cancer, what stage, etc and plan the next stage of war on my lung cancer.

Looking on the bright side of life - this was the first 'outpatient surgery' in the last 16 months of my lung cancer odyssey that has not left me hospitalized.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Thursday, April 25, 2013

me time / us time

Checking in for my Wednesday 9 AM pre-op blood work and EKG the clerk at MedStar Franklin Square Hospital reminded me the tests won’t take long and shared that Baltimore radio personality Marty Bass suggested to listeners this morning to get out in this 76°F (24.4°C) sunny day and make some “me time”.

Trying to outlive lung cancer can be suffocating especially with anxiety soaring over my looming EBUS biopsy of ‘Bob’ scheduled for dawn Friday and trying to find a balance with my caregiving for Patti.

Marty Bass thank you for the suggestion, even better than 'me' time was ‘us time’ at the National Aquarium and walking around the Inner Harbor with my daughter and loyal sidekick through all this.

“Just look at the world around you
Right here on the ocean floor
Such wonderful things surround you
What more is you lookin' for?
Under the sea”
We had not visited in years and IMHO it was the treat of all treats to spend a couple hours making new happy memories, rather than let worries about Friday’s EBUS drown me.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Tuesday, April 23, 2013

turning over rocks / mediastinal lymphadenopathy

I cannot ever remember having a more enjoyable time in a medical office in my life than meeting with Dr. William Krimsky, Director of Interventional Pulmonology at MedStar Franklin Square Medical Center, and a national leader in interventional pulmonology along with Ruth Doerfler-Evans, RN and Thoracic Coordinator Navigator. I felt comfortable with them perhaps even sympatico. He even high-fived Megan on breaking me the news of my previous EBUS flatline with the question, “Well, are you resurrected or a zombie?”

They obviously had read through and enjoyed sections of my ‘cancer book’ as I call the binder of 2 inches of records from the last 16 months interspersed with blog entries. I had duplicated the binder and sent it ahead two weeks ago. We talked and even laughed about parts of my lung cancer odyssey.

We ALL adjourned to a large screen PC to talk about ‘Bob’. Words are a fine distinction but when you live with a diagnosis of lung cancer it’s words of hope vs words that suck the hope out of you.

We agreed to get in that right lung in just 4 mornings actually a pre-dawn pre-op on Friday and get some pieces of Bob to biopsy with Endobronchial Ultrasound (EBUS) Biopsy. God willing Megan should be driving me home by late morning / early afternoon.

Returning home on Monday I was rudely reminded of the flaws of country mouse cancer treatment vs city mouse. PinnacleHealth Fredrickson Outpatient Center, where I have had most of my tests and scans done over the past year, will not do STAT testing much less fax results unless the procedure or surgery is being performed at PinnacleHealth. This fiefdom focused medical care is so the antithesis of patient focused medical care I had treasured for a couple hours today.

Sooo Wednesday morning I’m driving back down to Baltimore for EKG and blood work and if nothing is strange about results – EBUS here I come. 

16 months ago, today, I learned an X-ray had revealed a 9 mm vague nodular density in my left upper lobe. I have learned along the way that lung cancer treatment is a lot like turning over rocks I’ll never quite know what is underneath until somebody helps me pick it up and look. 

I hope Friday's biopsy finds 'Bob' is just a pissed off lymph node, should 'Bob' be cancerous I pray for the courage and wisdom to face such a game changer.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Thursday, April 11, 2013

diagnostic radiation levels = HULK time

While technicians hide inside lead lined booths, “we the patients” are exposed to radiation. Lesson for the day, the millisievert  (mSv) measures radiation exposure.

So what exactly have I been exposed to over my 16 month lung cancer odyssey.

As always first let me first express my gratitude for still being alive. When I began my odyssey I knew no one who lived this long after a diagnosis of lung cancer.

Over the last 16 months I have had 17 chest x-rays, 5 CT scans, a single Nuclear Stress Test, and 2 PET/CT scans.

RadiologyAssociates of New Jersey claims “Experts say 3 mSv per year is probably OK for most of us; 20 mSv for those who must have medical tests.”

OK drumroll please … over the last 16 months my diagnostic exposure measures 63 mSv.

To liberally paraphrase the radiologist report from this past PET/CT scan,

1)  'Bob’ (see naming of lymp nodes) continues to misbehave larger and brighter than PET/SC of 14 months ago, "consistent with metastatic disease”.
Odyssey notes – ‘Bob’ may as well be a hemorrhoid he is such a total pain in the ass. Gone one CT and back another, radiologists always label him when they find him as consistent with probable metastatic disease. ,,, My current pulmonologists contend there never was a 'Bob" on first PET/SC" ... keep in mind 'Bob' equates to the drain of the lung. Lots of lung jung or pneumonia or bronchitus and 'Bob" gets an attitude. 
2)  “minimal pneumonitis since prior PET scan though increased in size since 3/15/2013 CT”
3)  “misc lung junk too small to accurately characterize and long term follow up recommended”

I was killed last March during an attempted Endobronchial Ultrasound (EBUS) went flatline. Bob was never biopsied or even seen before procedure was aborted to concentrate on reviving me.

Enough already!!! Next stop Baltimore on April 22.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Friday, April 5, 2013

lung cancer blogger warriors

Lung cancer bloggers have a higher death rate than war correspondents but celebrities draw the media attention. 

I choose to lift my cup of morning coffee today to praise two fallen lung cancer blogger warriors.

Following my 4 month follow up CT Scan in July 2012 after lung cancer surgery, I decided to make some noise about lung cancer awareness and began blogging about my own lung cancer odyssey.

I began by googling/finding a list of people blogging about surviving lung cancer and posted links to them in my sidebar.

Somewhat like cyber neighbors the first to drop in and visit me was Teri Simon “a never-smoker with absolutely no family history of cancer.” Diagnosed with Stage IV Lung Cancer in December 2009. Blog: A Flying Elephant Living in the Land of Lung Junk sent me a warm, welcoming email offering her phone numbers and after skimming through both My Lung Cancer Odyssey and my Caregivingly Yours, MS Spouse Caregiver blog offered, “Holy crap, man!  What you've been through and are going through! You should NOT have to journey this alone!!”
Battling lung cancer, Terri died 5 months later. A video of Teri Simon’s memorial service was posted on my birthday.

OK I confess a bias toward Doug White’s postings both on twitter @DougWhite5150  and his Facebook page, it’s a guy thing. Too few guys blog about trying to outlive lung cancer. I treasured his self-proclaimed “smartass” outlook while fighting off two cancers at once, our banter and his smiling face wearing ever changing headwear as chemo took his hair.
Doug mentored me early on “Yes Patrick...lots out there that makes us feel doomed from the start.  It all has to be ignored and you fight your own fight. Be careful using the word cure, there is none. I just caution people always about cure and "survivor" since it can come back and often does. Remission.”

Diagnosed in 2008 with Stage IV head and neck cancer Doug “overcame” it the following year before being diagnosed with Stage III Lung and Neck Cancer in 2012. “I'm late Stage 3B and we fully plan to beat it down.”

Battling cancer, Doug died on April 1st.

“Courage, above all things, is the first quality of a warrior.” 
Karl Van Clausewitz

They inspired me and my lung cancer odyssey, I miss them. Blogging from the front lines of the war on lung cancer our ranks do thin out. I pray if we all continue to make enough noise this trend may change.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Thursday, April 4, 2013

is "wait and watch" acceptable with lung cancer

“The Art of War” by Sun Tzu was curious reading at least to staff who asked and especially those transporting me between multiple x-rays while I was hospitalized for a pneumothorax following my CT Guided Needle Biopsy at Holy Spirit Hospital in Camp Hill, PA last February.

“the worst calamities that befall an army arise from hesitation”
― Sun Tzu, The Art of War

Soooo when I read “When it just wasn't good enough to "wait and watch," from a patient story on MedStar Franklin Square Lung Cancer: Thoracic Cancer Center web site, I lept from my chair fists pumping the air.

Well, HELLO City Mouse Cancer Treatment! Good Bye, Country Mouse. In Baltimore, only 85 miles away,  I believe I have found my cannon for my cancer fight. 
I emailed them on Friday, the next day I received a personal response by email asking me to call on Monday giving me the name and number of their nurse navigator. … This is the way cancer care should work!!!

“Treat patients with the respect and attention they deserve, making them feel cared for every step of the way”. “We also offer soup-to-nuts support services along the way, as well as a Thoracic Cancer Coordinator, who functions as a patient navigator, to make sure you never feel lost or confused.”

The quoted lines from their website are an understatement. The Nurse Navigator I spoke with was a godsend. My scanxiety and anxiety levels dropped as she spoke with me while at the same time my hope meter of the chances of surviving lung cancer skyrocketed.

We talked and we laughed for almost an hour. I have never felt so cared about and cared for.

She set me up with an hour appointment in three weeks with Dr. William Krimsky, Director of their Center for Interventional Pulmonology, and a national leader in interventional pulmonology and in the use of superDimension for the diagnosis and treatment of lung disease.

Other advertised positives of City Mouse Cancer Treatment have left me reeling with hope and renewed fight.

Immediately calling some friends and family, I was repeatedly told I have not sounded this excited in years.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Monday, April 1, 2013

patience and shuffle the cards

How in God’s name, living with lung cancer, can I not think about death, resurrection and all the afterlife stuff on Easter Sunday.

Living with a fatal diagnosis I am finding paradoxical. ‘Sooner than later’ has a way of bringing feelings and reflections on both life and eternal life out of the abstract.

Raised Irish Catholic and by a Mom who was a psychiatric nurse who even assisted with Elisabeth Kübler-Ross’s near death studies. Death and dying conversations in general I suspect may have been more frequent at our family dinner table than others.

During my college years at University of Maryland, I even took and aced two Death Education courses as an elective with Daniel Leviton. While already more than familiar with Ross’s book “On Death and Dying” and her hypotheses of the five stages of dying, I was introduced to a pioneering book by Herman Feifel, “The Meaning of Death”.

A teacher until the very end Daniel Leviton died of esophageal cancer in Spring 2011, “There is no solid evidence that death education reduces anxiety about death” he once remarked “Death always comes as a surprise.”

Fortunately Patti’s Multiple Sclerosis dementia is a welcomed recess and frankly ‘the big exception’ to the above. In Patti’s mind I have no lung cancer. From the moment I pick her up from her care facility until I transfer her from her wheelchair to bed – I live in the time of before lung cancer.

Long a fan of Cervante’s “Don Quixote”, I’m reminded of Montesinos’ cave. An underworld cave where Don Quixote spends three nights conversing with deceased knight errant’s of old. On the third morning, Quixote emerges from the enchanted cave having learned, “great exploits are reserved for great personages. And if it be otherwise, O cousin, I say, patience and shuffle the cards”.

I am no great personage but I have learned that by shuffling the cards of fate, dementia trumps lung cancer.

As does Easter Sushi trump Easter Ham, but I did not need to spend 3 nights in an enchanted cave to know that, Patti’s dislike of ham predates onset of MS related cognitive challenges and dementia. 

Today it’s time to devote some time to aiming my inner knight errant self at trying to outlive lung cancer. My growing anxieties over country mouse cancer treatment medicine were only exacerbated by Easter Sunday table talk with Patti's family.

Table talk catapulted calling The MedStar Franklin Square Medical Center Thoracic Cancer Center in Baltimore, MD just a 90 minute drive to ‘city mouse’ cancer treatment medicine to the top of my ‘to do’ list for bringing a cannon to my lung cancer fight.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @