Thursday, March 28, 2013

bring a cannon to a lung cancer fight

It’s been 9 months since I had a ‘no evidence of disease’ CT Scan.

I’m getting damn tired of the scanxiety of inconclusive scans creeping into my waking hours and leaving me tossing and turning through the night.

In November it was compromised by a chest cold and “concerning for new lymphadenopathy” recently a sinus infection “concerning for pneumonia” created a CT Scan impression “concerning increasing size for adenopathy”, lung junk vs lung cancer.

While in my real world, my wife's MS dementia erases my lung cancer, and I admit the cancer free outings with her are a treat. 

"Concerning" is not an acceptable word.  It’s time to bring a cannon to a lung cancer fight. 
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Sunday, March 24, 2013

country mouse vs city mouse lung cancer treatments

Would my chances of outliving lung cancer be better if I lived in, or outside a major city?

Thanks to Google I did not have to ponder long about country mouse vs city mouse medicine. "… willing to travel to receive treatment"  Special Report: Behind a cancer-treatment firm's rosy survival claims.

Reading through the lung cancer blogs in my sidebar it is kind of impossible to ignore the pilgrimages to Alice Shaw, MD at Massachusetts General Hospital.

Of course money neutralizes country mouse medicine by creating the opportunity to travel to city mouse medicine. Expanding my question to would my chances of outliving lung cancer be better if I had a pile of money or the support of income from a working spouse?

As for that working spouse … the Seattle Cancer Care Alliance found that “A woman is six times more likely to be separated or divorced soon after a diagnosis of cancer or multiple sclerosis”  

Divorce and/or separation dramatically impacts health insurance and resulting health care options beyond the loss of emotional and physical support .

Federal gridlock has ass backwards neutralized the advantage to wealth in cancer care ... “Experts at leading cancer organizations say expected cuts from the sequester will mean dramatically less money for critical cancer research—and patients not having access to lifesaving treatments.” Sequester Cuts Put More Cancer Patients at Risk of Dying, Researchers Say

Obama health law anniversary finds 2 Americas, “active sick and worried.’

For a quarter century I've thumbed my nose at the gods fighting to maximize my wife's quality of life from her progressing symptoms of Multiple Sclerosis. 

Am I now reaching too far to hope to cheat my own death?

With Easter Sunday looming, cheating death is hard to ignore. 
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Thursday, March 21, 2013

lung junk vs lung cancer

Visiting with my thoracic surgeon and oncologist yesterday to try and decipher my 12 month follow up CT Scan from lung cancer surgery was so high anxiety it can best be captured in the things I left behind.

I left my eye glasses at the surgeon’s office. Leaving my oncologist’s office I left my vest. To say I was discombobulated would be an understatement.

Previously I wrote about naming my opposite lung lymph nodes to make them less scary. However, unstable lung junk no matter what I call it is no friend of my future.

‘Hi’ (aka hilar) grew a mm. ‘Media’ (aka mediastinal), away somewhere in November, was back at her ‘D-list’ July size. ‘Bob’ (subcarinal) on the other hand grew 70%.

One of ‘Bob’s jobs is to serve as the lung’s drain and since “airspace concerning for pneumonia” was found in the right lung it’s possible Bob is simply a really pissed off lymph node.

November’s CT scan was inconclusive due to my chest cold / upper respiratory infection and now my 12 month scan is messed up by “air space concerning for pneumonia”.

No one could tell me definitively whether this unstable lung junk is cancer; nor could they tell me it’s not, it’s just “concerning” to them. It's my lungs and my life, it's more than 'concerning' to me, it's freaking me out.

So after weighing my surgeon’s and oncologist’s opinions and huddling with my previous co-conspirator in silence and now my co-survivor who also accompanied me to my surgeon’s  appointment - here’s the plan:  a 10 day course of an antibiotic Levofloxacin (Levaquin) to deal with the pneumonia, take a week for lung to ‘chill out’ and then a PET Scan. If the PET scan lights up ‘Bob’ or any other lung junk as possibly cancer then it’s another ride on the EBUS for me. … Since my last EBUS killed me I am not eager to try that again.

I also raised my growing concerns about ‘country mouse’ medicine vs ‘city mouse’. Would my chances of survival be better if I lived in, or outside a major city with a medical reputation?

We are planning to drive to Baltimore should I need the next EBUS. 

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Sunday, March 17, 2013

a refocused life lung cancer survival

Awakening as a lung cancer survivor a year after I was released from the hospital following lung cancer surgery is awakening to a refocused life even when told from my MS caregiver perspective snow is falling on corned beef and cabbage .

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

Thursday, March 14, 2013

preparing to SURVIVE lung cancer surgery

A year ago today I popped an Ativan and prepared to head to lung cancer surgery.  With all the 'just in case' necessities taken care of as detailed in my previous entry preparing for lung cancer surgery,  now it was time to prepare to not only survive but LIVE. 

Still concealing my diagnosis and surgery from everyone except my co-conspirator in silence we debated who had driven to the previous outpatient surgery that briefly killed me and reversed seating before departing.

With St. Patrick’s Day looming I focused on getting out on the third morning by loading up on the good luck charms, socks emblazoned with shamrocks and a St. Patrick’s t-shirt.
Needing to disappear for at least 3-4 days took strategy.

Spousal caregiving and Patti’s family I resolved by picking Patti up the evening before surgery and posting an entry to Caregivingly Yours moments after midnight “This chili is bangin’!” –MS and Speech

Professionally as a self-employed mobile disc jockey life was taking a battering. I could not commit to jobs with both my future and post-surgery abilities unknown. I was now under ‘Management by Voicemail’.  

Coincidently my young cousin was undergoing brain surgery following a fall, so my family’s attention was justifiably on him.

With the exception of a random phone call from a person I used to know, the ruse worked perfectly.

Three to four days hospitalized recovery was projected. OMG! Sleep and/or rest is conceptual at best in any hospital I learned after two unexpected overnight hospitalizations. 

I came prepared this time with several audio books on CD from local library, portable CD player, spare batteries and a pair of comfortable noise suppressing head phones.

Waking up after lung cancer surgery (VATS with left upper lobe wedge resection, mini-thoracotomy with mediastinal lymph node dissection) that afternoon was one of the more memorable moments of my whole lung cancer odyssey …lung cancer surgery ICU

My orders were to walk at least 4X daily and while I have been told my ass is quite nice looking it gets drafty walking around in those gowns. A pair of Captain America and Mario Brothers “leisure pants” made my walks a fashion statement.

What all the medical professionals fail to realize is that … if you think you 'look good' - then you think you 'feel good'... hospital survival kit for lung cancer surgery

Thoracic surgery shares a floor with cardiac surgery and meaning no disrespect to cardiac patients, walking was like parading with snails. With my epidural and chest tube attached to a rolling IV pole I felt great and found myself slaloming through the snail parade.

Since I was attached to an IV I was supposed to have a walking companion, most of who assumed I was just another snail on parade.  At one intersection of halls a choice in direction was required either toward the window or the wall.

When you mix one part ‘Epidural of Fentanyl’ with one part me strange things happen and I found myself answering the question in my best imitation of Lil’ Jon:
“Now stop, oh then wiggle wit ya.
Get low, Get low
To the window (TO THE WINDOW), to the wall, (TO THE WALL)”
My answers became known as the “Crunk Walk”.

This 60 second clip featuring Betty White and Sandra Bullock from a movie called “The Proposal” captures the antics of the “Crunk Walk”. Nurses and aides working on that section of the wing where my companion walker’s would ask me which way I wanted to go began to look forward to my antics.

St. Patrick ’s Day morning I received Communion by a Franciscan Friar and a visit from my thoracic surgeon … I was going home!

You’ll never convince me that superstition, fashion statements and Crunk Walks do not facilitate healing. J

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Saturday, March 9, 2013

preparing for lung cancer surgery

Last year It had been a ‘top secret’ 3 months since a 9 mm vague nodular density on my left upper lung lobe had ripped open my world.

I felt physically fine. No cough, no fatigue. Decades of MS spouse caregiving are about physical care and well I was in good physical condition.

In my odyssey both outpatient surgical procedures had gone terribly wrong. Following CT Guided Needle Biopsy I was hospitalized with a pneumothorax (less than 10% chance). During EBUS I flatlined and was hospitalized overnight (less than 3% chance).

Doing the same thing over and over again and expecting different results is a popular definition of insanity.

With my luck so far, and now facing major surgery - preparing for surgery pragmatically I had to prepare to die as well as to hope to live.

My wife was in a long term care facility. Multiple Sclerosis dementia impaired her awareness of anything. Fortunately there was a Care Plan Review scheduled a couple days before surgery. Accompanied by my daughter I used the opportunity to let the cat out of the bag to facility staff and insure that should, God forbid, anything happen to me the transition would be seamless for her as her Mom’s advocate.

Looking around me at the detritus of a lifetime, I remembered the toll of time and emotions following the deaths of both my parents fifteen years earlier and my only brother two years later and having to clean out the left overs of their lifetimes. … I could not and would not leave my daughter in such a position. Bordering on drama queen, I began ‘Spring Cleaning’ of a life.

Fortunately after a quarter century of spousal caregiving we had all the legal paperwork from wills, to living wills, to advance directives to power of attorney done years ago. Adding codicils empowering our daughter who was a minor when originally prepared was the easiest part of the preparations.

Reviewing everything with her was poignant including from what functions would require a death certificate through save the money and just cremate me if I die, spread my ashes somewhere we had fun together. Stony Man Mtn in the Shenandoah where we have annually walked to the summit or The Inlet in Ocean City where we jet skied for decades.

Cyber junk was a curious pile of noise. Fifteen years earlier there was no digital legacy to deal with. I was dumbfounded to discover how many of my emails were stored in cyber space. Delete, delete, delete while time consuming reduced the pile to nada. Read and delete became my new mantra and one I continue to this day.

Several years of blogging about MS spouse caregiving as left more than a few footprints in cyberspace. This seemed cruel to leave for our daughter to clean up so I discovered the “delete all” doomsday links and demonstrated to her how to access.

Facebook has always creeped me out when ‘friends’ or ‘friends of friends’ die and family leaves their page up. My daughter has tried to explain to me that those pages can serve as a testimonial to many or family simply did not know the password to delete. So I began to delete pictures, posts, even comments except the most recent.

Come on now, Jesus Christ left not one written word why in God’s name should my babble survive.

Hoping for the best, preparing for the worst made for waking up in ICU on the afternoon of March 14th, 2012 all the more excellent. 

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Wednesday, March 6, 2013

my co-conspirator in silence

Still concealing my diagnosis a year ago “my co-conspirator in silence” as I would introduce my daughter began attending my appointments with me.

Where I was sleep walking through emotional exhaustion, she asked the probing future-view questions of my oncologist and thoracic surgeon.

I cannot even count the times I would look over at her and remember the 18 month old child I shared Thanksgiving 1989 dinner with while her Mom was hospitalized upstairs with her first major MS exacerbation. Mesmerized by the hospital vending machine food carousel, we ate, laughed and made the best of the situation.

In a sense raised in her youngest years in hospitals, she has only seen her Mom walk in old videos, or stand in old pictures.

When younger and smaller she would sit in her Mom’s lap to help drive her scooter. Before her 16th Birthday and her own driver’s license her Mom would be living in a long term care facility.

Framed in this perspective my commitment to MS spouse caregiving left her ‘collateral damage’ of Multiple Sclerosis.

With my lung cancer diagnosis … now at the age of 24 what future would she face?
A person I used to know would get so wiggy over her friend’s cancer and treatments that it distressed everyone around them. I could not let such worry undermine life.

Another lung cancer blogger raised the question does the attention of lung cancer make us narcissistic? In my story for the last quarter century I have always been secondary to my wife’s Multiple Sclerosis. I was concealing my diagnosis because I really didn’t want to deal with the “how will this affect Patti” questions, as if I was chopped liver.

My wife’s MS related symptoms of dementia prevent her from remembering I have lung cancer no matter how often I remind her. She is however safe in long term care and whether I live or die that will go on.

Living with the daily stress of spousal caregiving for almost a quarter century reduces a caregiver’s life expectancy by up to 10 years. Yes, I chose to roll the dice on my own health by juggling spouse caregiving and basically single parenting for over 23 years. But now it’s time to choose to look at my lung cancer odyssey from my daughter’s perspective, from co-conspirator in silence to co-survivor.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Friday, March 1, 2013

I died today, a year ago

Well, actually a year ago today. March 1st 2012 was a beautiful late Winter afternoon when I flatined during the Endobronchial Ultrasound (EBUS) biopsy at PinnacleHealth Hospital on the banks of the Susquehanna River. 

Since I was concealing my diagnosis of lung cancer from everyone except my daughter, here is a peak behind the curtain of that day.

Never take a minimally invasive outpatient procedure for granted. Told there was less than a 3% chance of something going wrong I relaxed to the anesthesia that is until I became “acutely bradycardiac”. As pulse and blood pressure dropped out surgeons began CPR while anesthesiologist “gave resuscitation with drugs”.

During all of this I saw no tunnel with deceased family members reaching out to encourage me to go into the light.

Instead I awoke to my thoracic surgeon’s voice asking me where my daughter was?

Blinking awake, cardiologists began descending on me because apparently when asked if anything hurt coming out of anesthesia I had pointed to my chest. Duh! My surgeons had been whomping on my chest to revive my heart.

Little to nothing was explained to me just more questions, until my daughter called on my cell phone with her famous quip “Well are you resurrected or a zombie?”

Obviously I was oblivious through it all. Apparently I was revived with an injection of atropine and epinephrine. Sorry nothing as dramatic as Hollywood images of John Travolta stabbing a long needle into the heart of Ulma Thurman as in Pulp Fiction, instead it was injected into my IV.

My anesthesiologist shared some more of the story. Besides assuring me that oxygen to my brain was never impaired he remarked about my name tags on my gown.

Since a wee lad I have had to fight to use my middle name. I never respond to my first name so it occurred to me “what if” and in preparation for outpatient surgery had made up some labels to wear on my gown, “just in case” you needed to get my attention. 

Apparently as soon as surgeons performing CPR used my preferred name, “Patrick” I rocked that flatline back to life. 

Hate name tags? Someday somewhere one may save your life.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @