Friday, May 31, 2013

Lung Cancer you have really, really pissed me off!!!

Yes, I ‘heard’ that hair loss could be a side effect of brain radiation therapy. I even acquired a preemptive ‘fade cut’ however hair loss never happened.

Until yesterday, the proverbial ‘morning after’ 10 brain radiation treatments over 15 days.

Awakening to the gift of another Stage 4 morning and painlessly hugging my pillow good morning, I was surprised at the amount of ‘cat hair’ on my pillow.

Except it was not Stardust’s hair as I discovered walking into my bathroom, it was mine!

The day I graduated high school in 1968 I began to grow both my lifelong mustache and my hair long.
Lung Cancer I know you specifically are not responsible for trying to scalp me before you tried to kill me but you triggered the radiation therapy to get you out of my head. I hold you responsible. Plus I am feeling great after treatment, and all systems are go escalating toward DEFCOM 1 on June 11 when I start chemo against you..

Radiologists and even my friends at Salon On Main had told me IF you lose hair, it more often than not grows back, sometimes even a different color and texture. Though I am not sure that curly blond or ginger is my look.

As my wife’s Multiple Sclerosis spouse caregiver since 1989 I know how quickly time when involved in fighting any DX works against support. ‘We the people’ have the attention span and support of a Hallmark “get well” card.

Trying to steal my freak flag may have been the 24/7 kick in the butt to get busy. No longer can I hide beneath 'you look fine'. Not that I dislike the Yul Brynner or Pitbull look but I need a metamorphosis to ‘Spouse Caregiver outliving lung cancer’. I have people to entertain and money needs to be earned. The sequential order of priorities shifts as we spiral into a symbiotic relationship, a real death waltz. Outdancing death now that I like!

Thank God there are those moments when these Irish eyes are simply left smiling. A young clerk noticing my shirt and hat combo at the grocery store checkout shared it was “sooo Thoreau! Obviously you hear that different drummer.” … you have no idea. 

update Since no matter how I try to rock it, splotchy hair loss just does not look healty, so with brain mets in retreat and feeling Stage 4 on top of the world and ready to rumble with lung cancer, I  got rid of it and got myself an ice cream cone. 

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Wednesday, May 29, 2013

whoompa whoompa headaches = metastasis

Like any gifted assassin … lung cancer cloaked in stealth, slithered into my brain … while my ‘cancer people’ were on guard since November staring into scans of lung junk in the opposite lung, "concerning" but inconclusive due to “air space concerning for pneumonia”.

Nothing wrong with their protocol it’s just that lung cancer has no rules except its primary objective – to kill me.

God only knows what motivates the medical profession to base  protocol inspired on a French Maginot Line philosophy of folly to halting lung cancer. Is it science? Is it CYA? Or is it lawyers? I vote for lawyers.

Yet in a brief few months I was abducted from Stage 1 lung cancer to Stage 4 with brain metastasis while guarded.

That is until headaches appeared, and as headaches я me for almost 30 years my personal history did not help! Soooooo when the “whoompa whoompa’ headaches began in February they caught my attention because they were not Cluster Headaches, nor Migraines, nor garden variety.

In conversations with my daughter, I began to call them whoompa whoompa because rhythmic sounds would trigger them, most noticeably at grocery stores near noisy condensers for example in the refrigerated aisles. Google offered no matches to that.

My focus suddenly became these peculiar headaches, even I forgetting about the lung cancer.

One episode of wobbling walking the length of my hall in early February was weird but never repeated.

Yes I began to wake up to pain but God knows I have done that for decades and have the weapons for that.

Even my sleep machine normally programed to night train sounds began to trigger the whoompa whoompa to the clack of the tracks.

Talking with my primary care nurse practitioner in late February she began to raise the flag that something else might be going on besides headaches, suggesting I see an ophthalmologist, a neurologist and prescribing a round of antibiotics, doxycycline 100mg.

Ophthalmologist made sense and I set it up. Seeing a Neurologist because symptoms could be indicative of MS or Lupus made no sense. My wife actually has MS and since 1985 and no neurologist has ever been of any help. 

My eyes checked out fine, though the ophthalmologist did first use the word metastatic as a possible explanation.

Request for a brain MRI by my nurse practitioner was rejected by medical insurance because vertigo did not justify a brain MRI. Vertigo? Where did that come from? Seems whoever reviews symptoms decided they were vertigo and stamped it rejected.

Yes headaches were getting worse but my palace guard still sentinel on the Maginot Line of cancer care never took their eyes off my right lung junk even adding another stronger round of antibiotics, levaquin to try to clear things up for a readable PET Scan.

For those fighting to outlive lung cancer in big cities, an Endobronchial Ultrasound (EBUS) certainly is a safe and outpatient tool available to reach in through the scans of lunk junk to find out what was going on.

Unfortunately I live in South Central PA and my local hospital PinnacleHealth of Harrisburg flatlined me a year ago attempting an EBUS.  My Mom did not raise no fool. Just because I have lung cancer does not make me a lab rat.

For EBUS I would have to drive to Baltimore to have it done at MedStar Franklin Square Medical Center by the experienced and gifted team lead my William Krimsky, MD Director of Interventional Pulmonology.

As my daughter remarked it was the first and only ‘outpatient procedure’ that I actually walked away from the way it supposed to be since this began and only fueling my anxieties over country mouse medicine vs big city.

Unfortunately this successful EBUS hit the adenocarcinoma trifecta in my right lung and it now became a question of Stage 3A or Stage 3B lung cancer … again all eyes on the lungs. 

Even with now increasing mention of my headaches to cancer people, new adenocarcinoma overshadowed all.

Incredulously and fortuitous I had just driven 90 miles, parked our car, arrived at Krimsky’s office to talk pathology and staging when I had an episode of syncope and fell.

Taken to their ER and it was bang bang bang a CT Scan was done of my head revealing "suspicious for neoplastic process" immediately followed by a Brain MRI "compatible with metastasis"

Welcome in the blink of a eye to Stage 4 lung cancer with brain metastasis. Gone now those relative lazy hazy crazy days of Stage 1 lung cancer.

The speed of both testing, focus on the head and abandoning the Marginot Line folly of staring into the lungs with such instant and effective results could not have been possible anywhere else. Admitted overnight and prescribed levetiracetam 500mg 2X daily plus dexamethasone 4 MG 3X headaches subsided immediately.

Within days I began 10 sessions of brain radiation therapy at Oakwood Cancer Center and not only headaches but swelling and numbness began to immediately disappear.

I always hate to say this when trying to outlive lung cancer especially Stage 4 but I’m feeling good even better with each day especially today my graduation from brain radiation.

Picking up Patti for lunch from her care facility, we all celebrated our family’s dual celebration today. My last brain zapping and World MS Day at Helena's Chocolate Café & Crêperie.

Come to think of it we do celebrate some peculiar family moments. 

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Sunday, May 26, 2013

Great PA Flavor Fest: Lung Cancer pushing Multiple Sclerosis

CaregivinglyYours  and My Lung Cancer Odyssey  cohabitate these days. Sooo, Saturday morning I put my Stage 4 lung cancer with brain metastasis on my back and pushed my wife’s wheelchair over a sizable chunk of the 35+ acres of paved walking paths, stone or grass covered areas, and frankly at times near vertical terrain of the Great PA FlavorFEST™ on the medieval themed grounds of the Pennsylvania Renaissance Faire. Patti was blindsided and physically broken by Multiple Sclerosis in 1989 yet with a little help, the person trapped inside her body and I have been doing this annualy on Memorial Day weekend for years. 

Saturday was my first day off after a consecutive week of brain radiation treatments, 8 down 2 to go.

Brain radiation has zapped the physical symptoms of lung cancer metastasis and here again the stigmas of treatment have not happened. … Well OK I admit I did launder my wallet the other night, forgetting to take it out of my pants. As I have never done such a thing in my life that I’ll have to chalk up to brain radiation.

Empowered by our daughter’s assistance we headed out on this beautiful autumn morning as we picked Patti up from her Care Facility under sunny 48°F (8.8°C) skies. … .. What is not to like about free parking, free admittance, and free tasting of wines, beers, and foods?

Bee venom therapy was a two year campaign in Patti’s quarter
century war with MS. Since then bee related products have always caught my attention. ... Soooo reading of a vineyard, Bee Kind Winery, that incorporated not only traditional grapes and fruits but also homemade wildflower honey  … was a must free taste stop for me. It was so heavenly I bought a bottle of their “Bee Berry Black.”

We ended the day in the ‘Globe Theatre’ feasting on frozen lemonade, Irish nachos, frozen chocolate cappuccino, and roasted turkey legs. Yes, I had to finger feed Patti tearing pieces off my turkey leg, and collective Irish Nachos but frankly it always looks more like “here taste this” than assisted outdoor dining. Most important there were no MS dysphagia related choking or swallowing episodes. Since verbal cues are always necessary, I had fun creating hand puppet verbal cues to compensate for volume of music.

Mark DeRose and the Dreadnought Brigade launched into Van Morrison's spirit quest song “Into The Mystic” as I drifted in my seat back to the first time I fell in love with that song in 1970. Except now 43 years later not only my body and my soul but also my roasted turkey leg began to sway:
“We were born before the wind
Also younger than the sun …”

BBC claimed in a 1999 study that it’s among the most popular songs doctors listen to while operating.

Lung Cancer take your paws off my “gypsy soul”. Medical professionals have likewise noted the improvement. Following my 7th radiation treatment, I high-fived my radiation oncologist, Stephen J. Milito, M.D. as he reduced my steroids as part of the attack on the metastatic lesions.

Meeting with my pulmonologist , Todd Eckroth, of Carlisle Regional Sleep Disorder Center later that morning he checked me out including pulmonary function tests and found my lungs ‘good’ especially considering I had a piece removed last year and was being treated for lung cancer. My Oxygen Blood Level was 96%.

Most important to me was not only did we have a fun family day but Saturday’s outing was our 4th this week, a record since my abduction from Stage 1 lung cancer to Stage 4.

Patti’s MS dementia erases my diagnosis in her mind, conversation and activities. My lips to God’s ears, having NO lung cancer is best if only for a couple hours.

Exiting the Renaissance Fair grounds up the steepest hill, I confess to pausing to catch my breath, obviously Patti has gained some weight. :) 
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Wednesday, May 22, 2013

En garde! Cancer, prepare to die

“Courage above all things is the first quality of a warrior” 
Klause Van Clausewitz

The time has come to go to war to live … nothing I have ever written seems more fundamental.

I thank God for over a year diagnosed with Stage 1 lung cancer. One brief surgery and life was back to normal or so I thought.

Mornings seem earlier now in Stage 4 as I enjoy my coffee in the 64°F (17.7°C)  lilac scented dawn. Stardust, our cat, hunts through the ground fog.

I remember my daughter loaning me her copy of “The Art of War” by Sun Tzu while I had my CT guided biopsy and resulting pneumothorax 15 months ago that began it all. Everything beforehand I had concealed from everyone including her. How did I miss the warrior heart in my own daughter?

I will not waste my time on prognosis of Stage 4 with brain metastasis, Google if you want. Prognosis is about statistics not people – what lung cancer can never know nor claim is the heart of the warriors it meets and we all bring different pre-existing health to the fight.

Half way through brain radiation for lung cancer metastasis to the brain, we (my daughter and I) met with my oncologist today.

While radiation therapy has eliminated metastatic related headaches, swelling, numbness and pain, I get a two week break and chemotherapy begins with a half day drip every three weeks. I’m scheduled for three such drips this summer.

What began as ‘just an appointment’ with my oncologist Margarita Gareis MD yesterday metamorphosed into more of a family experience as we met and talked with my Care Coordinator and my assigned oncology nurse, touring chemo rooms, lounge and talking chemo thorughout the eclectic building. Synergy flowed and more importantly trust and hope grew. I went for an appointment and found my team at Andews & Patel Associates.

Curiously just three months ago while still Stage 1. I went in search of survivors like me and in a now prophetic visit in the chemo lounge instead found myself in awe and empowered by meeting several Stage 4 lung cancer survivors, two 4 year+ survivors and a 10 yr survivor.

I begin with a combo of Altima and Cisplatin on June 11. Biomarker testing did not come back great for targeted therapy so we are going in gangster style, everything the good, the bad, and the ugly are going to get hit during my chemo cocktail drips of about half a day or more. I’m forewarned my ass will be kicked like nothing I have ever known or imagined for up to 48+ hrs afterward. … Three treatments over the summer, likely every three weeks is the plan to start.

Soooo to paraphrase from the Princess Bride ... 
“Hello, My name is Inigo Montoya. Pancreatic Cancer, you killed my father. Lung Cancer, this stops here.  En garde Cancer prepare to die.”
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Monday, May 20, 2013

Disk check to lilacs

A brief electrical outage knocked my PC off Monday morning and as I watched the machine restart and begin to disk check itself it occurred to me that I was overdue for doing the same for myself.

Since hospitalization on May 8th I’ve been too focused on adapting, recovering, whatever. In a sense running scared.

Yeah I’ve read about the side effects of brain radiation therapy but 40% through it was time to press myself. My brain is more than precious to me and with the metastasis hopefully in retreat I needed to get it busy being my brain.

My loving ‘care nazi’ still will not let me drive.  So I mowed the lawn 5500 sq ft (510.97m²). A week ago my daughter’s assistance was needed to cut half. Today I cut it myself motivated by my daughter’s quip, ‘hey after all the lawn mower is kind of like a walker’. J Plus if you let go of the bar, I can hear if you fall.

Stubbornly I waited until the hottest most humid part of the day to wrestle with the lawn. No problemo, stamina was good, breathing good, I could follow lines and complete the task - physical check OK

I checked fatigue and confusion by working on line and/or phone entire day and early evening keeping up and getting ahead of my cancer book (actually a 2” binder and growing of copies of every test, result, procedure and more). My voice is getting raspy.

Inspiration can too soon become platitudes. Bottom line health care whether mine or anyone else is about information and what you control.

Yes I could multi-task attentions and do it well when abruptly my self-check was dwarfed by the horrific news out of Oklahoma. Too many times over the years I find myself watching TV in disbelief at news.

My brain’s memory was right in sink as I found myself pausing to remember and give thanks for the three of us the day a F3 tornado with winds of 200 mph suddenly dropped from the heavens into College Park, MD late one afternoon in September 2001 (yes,that same September 2001 only two weeks after terrorist attacks) killing two, injuring 50, and throwing vehicles and house parts helter-skelter for 10 miles.  Our neighbors told us they watched it skipped directly over our home sparing myself, Megan, and most of all Patti. Forces of nature are NEVER disability friendly.     

… and a vivid reminder that the next moment in time is never guaranteed. So hug or at least tell those you love every day that you love them.

When and if possible stop to smell the flowers. My lung cancer will be there in the morning. in the meantime, our yard features 4 lilac bushes and my radiated but successfully self-checked brain finished the day by harvesting a bowl of fragrance to perfume the home.

"Stands the lilac-bush tall-growing with heart-shaped leaves of rich green,
With many a pointed blossom rising delicate, with the perfume strong I love,
With every leaf a miracle—and from this bush in the dooryard,
With delicate-color’d blossoms and heart-shaped leaves of rich green,
A sprig with its flower I break."
When Lilacs Last in the Dooryard Bloom’d by Walt Whitman

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

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radioactive dawn #4

Songbirds begin around 4:30 AM, and even if dawn is still an hour away I awake smiling, life is incomparable.

My daughter drives me to Oakwood Cancer Center and I badger her to take a picture. Why? Hey if we were going to a big sporting game or something we would want pictures. I’m not playing a game nor is my team we are 'fighting' for my life … and when we win I want pictures.
As my head is secured by my mask to prevent movement, the linear accelerator purrs to life.

I lay and watch green laser beams appear slicing through the air to align and target me with high energy x-rays to blast away at the lung cancer metastasis that has spread to my brain. 

As the machinery moves around me, before me, above me, beside me, on my right, on my left I find myself falling into the prayer of St. Patrick’s Breastplate and the growing hope to fight to win this.
It’s over in seconds and the room lightens as the ceiling panels transform to a luminous virtual window creating the appearance of looking up while lying under a spreading flowered tree into a blue sky full of tomorrows.

Please do not get me wrong I am no cockeyed optimist. This is the scariest challenge I have ever faced.

"Most men lead lives of quiet desperation and go to the grave with the song still in them." Henry David Thoreau

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

Saturday, May 18, 2013

a brain radiation day off

Good Mornin’, Uncle Remus! Am I hallucinating!

Remus: "Patrick how long we known each other?"

Self: (smiling) as long as I can remember ol' friend.

Remus: "Then I ain’t no hallucination and you just sit down here with that cup of coffee. You got two days off from brain radiation for the weekend and it’s a
Zip-a-dee-doo-dah, zip-a-dee-ay
My, oh my what a wonderful day!"

Self: no question about that! I guess you saw me standing and smiling at the kitchen wall calendar. With the help of Patti’s parents yesterday I was able to accomplish 3 vists/outings to my wife’s care facility for the week. We all played trivial pursuit in the facility courtyard as a teasing breeze played through the gazebo.  It was also a chance to combine fun and check out any effects on ‘trivial memory’ after radiation.

Remus: "This morning mean anything else to you?"

Self: Come on now, that’s a no brainer. Raised in Maryland the third Saturday of May, it’s the Preakness Stakes.

Remus: "lung cancer is scary, let’s take a walk this Zipadeedoodah morning with your brain back to some memories in your laughing place"

I remember the ‘infield” at the Preakness was the ultimate “people’s party”. In  contrasted to the hoighty-toighty in the stands back in the 70’s it was a seafood version of Woodstock. BYOB, coolers, grills, tents … it was unique, the best party in the state. Amazing the whole era did not already erase itself.

I was there in 1973 and saw Secretariat break from last to first to win; he was the most majestic creature I have ever seen in motion. … Unlike the people in the stands and their field glasses, in the infield you crowd the fence banging on it, banging on each other and yelling and cheering.

Five years later in 1978 I watched one of horse racing’s legendary rivalries, Affirmed vs. Alydar. Though truth be told I had to pee so bad I had snuck behind the portable toilettes and was peeing on the fence when I looked up just as those two thundered by dueling neck to neck. There's a unigue  memory maybe I should have kept to myself. :)

Remus: It's YOUR laughing place, Patrick. “I prefers to think of it as thats the kind of day when you can't open your mouth Without a song jumping right out of it”.  

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Friday, May 17, 2013

where lung cancer lurks friends bring light

Toppling from living 14 months diagnosed with Stage 1 lung cancer to Stage 4 lung cancer with metastasis of the brain in the time of a month is beyond words.

Somewhere between being in an earthquake movie or Freddy Krueger dragging me down through my dreams might work for fiction except this is real.

Radiation therapy as promised is painless, quick and the headaches that were driving me mad over the past weeks are gone. Some serious episodes of hiccups are now making me batty but the proverbial teaspoon of sugar seems to keeps them at bay.

Meeting with Dr. Milito today after my zapping I learned my treatments will be only 10 rather than 14. Since I have had two that means 8 to go and then onto chemotherapy.

See what I mean ... a month ago Stage 1 lung cancer was basically maintenance free except for regular follow up scans every 4 months to monitor any changes. It is a diagnosis that optimistically lulls you while lung cancer lurks.

Following yesterday’s family culinary adventure, vegetarian chili, carnivores, and cannibals with my wife to celebrate my first zapping, it's time to get back to what life is about - caring for others.

My tradition of 3 outings per week with my wife from her care facility where she lives with severe Multiple Sclerois has been interrupted for two weeks by my own upheaval in health status; this will be comeback week with three!

Calling the wonderful owner operators, Cathy and Kristen of Salon on Main I explained my vainity angst through this new aggressive treatment stage. They suggested a transitional ‘fade cut’ to see what really happens. I even brought my own baby shampoo. Omen of omens, I learned that my radiation oncologist is a customer of theirs.

Next a 3 mile walk around town up and down varying terrain, and surfaces from sidewalk to cobblestones I self-checked my abilities and stamina and making some time for playing with our cat.

Stage 4 is another world and of course nothing is more violating than lung cancer slithering into my brain.

The operative word is living and that is what I intend to do.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Wednesday, May 15, 2013

Night Music and Radiation Therapy

Hiccups and chimes of a grandfather clock played a most bizarre duet as my mind and memories wrestled with the darkness of the sleepless night before the dawn of radiation therapy.

Earlier calls and emails of well wishes had left me tripping down rabbit holes full of emotions.

Drifting way back to beyond memory I was told I was x-rayed twice while in the womb. As a breech baby I was sitting upright facing forward. In 1950 the workhorse was the x-ray before being delivered by knife.

In retrospect a most curious ‘welcome to the world’ but here I am, soooo hopefully radiation is still my friend (and kind of midwife) and will blast the lung cancer metastasis to infinity and beyond.

Shampooing with baby shampoo and washing my face with dove soap makes it hard to get pumped up, it’s not exactly the locker room image of champions charging the field. Yet athletes play games, survivors do what it takes to live.

Omen of omens, arriving at the parking lot the opening strains of “Radioactive” by Imagine Dragons came through the radio.
“I'm waking up, I feel it in my bones
Enough to make my systems blow
Welcome to the new age, to the new age”

For those who know me well, I despise puzzles yet for today's dawn of my second overtime in life, it was “live as you've never lived before”.
First up the radiologists aligned my virtual self with my real self before being zapped. When I heard the phrase I was not sure if I had fallen back to the Woodstock era or was in casting for an avatar.

As promised the zapping was absolutely painless and frankly kind of cool with the linear particle accelerator spinning around me.

We stopped for a slice of pizza and some retro video table top games at JoJos Pizza in route home. Aligned and radiated did not improve my game playing. My daughter totally kicked my ass on games I played long before she was even born.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Monday, May 13, 2013

please no exploding heads

Halloween in May plus candy at the counter, what is not to like ... except the dawn of Stage 4 lung cancer metastasized to my brain has begun. 

After tag team mowing the lawn this morning, my daughter and I met with Stephen Milito, MD Medical Director of Oakwood Cancer Center and radiation oncologist plus his staff including nurses and radiation therapists for treatment planning.

I’m scheduled for 14 treatments of external beam radiation therapy beginning Wednesday. Treatments will be Monday through Friday with weekends off to ‘recover’ then review of progress with Margarita Gareis MD, my oncologist and to consider if gamma knife or cyber knife would even be an additional option before chemotherapy.

Radiation treatments allegedly take only several minutes, allegedly painless and the equivalent to getting an x-ray. Oakwood offers courtesy round trip van transportation which may be a great way to meet some people like me in my new normal.

 … and give my daughter a break. With over a quarter century caregiving experience myself I treasure her support, companionship and involvement but always have one eye on her.  

I was fitted for a mask that secures to the radiation table holding my head from moving and improves targeting the radiation. Unlike the sample I am playing with my real personal one was soaking in warm water waiting to be molded to my face. That was a bit weird something between waterboarding and starring in a creature feature.
As we spoke of potential side effects, IMHO men are vainer than women and hair loss is not appealing. Think I may swing by my hair salon and work out a two stage transition to buzz cut then to something bald and bad like Bryan Cranston's cancertainment character Walter White from 'Breaking Bad'.

They swore up and down that so far they have never exploded any one’s head. Nor could they remember any one ever asking about such a concern (obviously they lack my fascination with grade B horror films) which did not stop me from suspiciously eyeing the closed medical waste trash can before distracted by a bowl of mini-tootsie rolls at the counter.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @