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 @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

lung cancer metastasis to brain - yellow socks

Wednesday,it was a sunny bright morning driving the 90 miles SouthEast to Baltimore to meet with Dr. Krimsky at MedStar Franklin Square Medical Center. Obviously what we would be talking about would be far from ‘sunny and bright’ but it would be knowledge and knowledge is empowering, especially when preparing to begin Round 2 of the fight for my life.

At the risk of oversimplification this rendezvous in Baltimore was about Staging between 3A or 3B, however since I have been blessed with 16 months of believing I had Stage 1A either way the news would suck.

All in all the months of anticipation since lung jung appeared on follow up CT Scans between specialists reminded me of awkward young teen dances, a whole lot of standing around but few talking and much less touching.

Checking in with the front office staff at Krimsky’s office the next thing I remember is my daughter asking me “Dad, what are you doing on the floor, now?” Personal physical theatrics are part of me. For example, I fall to my knees when meeting long term lung cancer survivors exclaiming, “I am not worthy”.  I hug medical staff. As a fan of the 70’s sitcom “Sanford and Sons”, I do my best Redd Foxx impression feigning heart attacks fainting and anything to get attention or break the mood. 

Unfortunately, instead of my antics being greeted with just a roll of eyes … it was followed by the world’s shortest ambulance drive to their ER. After miming a Hulk Hogan pose down to confirm my health and requesting rockin’ lights and sirens I finally get some eye rolling from EMS people.

Believe me, never ever confuse the length of a ride with the beginning of a journey.

Daniel Dabbah, M.D. Emergency Medicine took the quantum leap that my nurse practitioner, Nichole S. Cambruzzi, had been trying to reach for two months, a CT Scan of my brain to look for a cause of headaches beginning in February that IMHO were neither Cluster Headaches nor Migraines. Dr. Dabbah looks like he fell out of the cast for a TV medical show as he delivers the ultimate medical cliché, “I have some good news and some bad news, which would you like first”. I look behind the bad news curtain first  … lessions in my brain suggested lung cancer had apparently metasiszed and became the leading suspect for my head aches.

Dr. Dabbah also wasn’t taking any of my shit about “self discharge” with something to the effect that this is not a prison but an extremely busy ER (in fact the busiest in Maryland), the choice is up to me. Megan was beyond concerned and wanted an answer about why I fainted and raised the trump card that she had the car keys. Accepting that this fight is about more than me, I said OK and resigned myself to another night in a hospital.

For over a quarter century I have been afflicted by Cluster Headaches  and unquestionably my higher tolerance and memories of mega headache pain detoured my focus on these new headaches, that is until I fell in a medical center and an ER Doctor supported by my daughter tossing in her opinion that asking me about pain levels from 1 to 10 based on my history with Cluster Headaches was not an real gauge on pain for someone who raced down to the cellar through the early years of over a quarter century of juggling caregiving for my wife’s MS progression and resulting single parenting to scream into a pillow and bang my head into concrete until I passed out.

The stress of the ER and more was sending my new headaches into mega levels. Unbelievably to me, Dr. Dabbah seemed to understand the flaws in standard pain level questions to a person with over a quarter century of cluster headaches and offered me a shot of morphine for pain whether I stayed or went home.

The problem with morphine, I explained, is that it for me it is forever linked to holding my Dad while he died of pancreatic cancer and watching his morphine drip through the longest night of my life. Dr. Dabbah listened and offered alternatives which I declined. 

Declining the morphine was also motivated by not wanting to invite an IV pain solution and improve any appeal of staying hospitalized another night. Michaela, my night nurse, and a PA named Hazi suggested trying Oxycoden as it could be taken every 4 hours if needed and could translate to pain control at home. It was the first uninterupted sleep from pain I had known since the night after successful Endobronchial Ultrasound (EBUS) of April 26 and I guess traces of the anesthesia remained. 

Early the next day Dr. Krimsky and Ruth Evans surprised us with a visit to finish both yesterday’s dangling conversation and field what questions they could about Stage 4 lung cancer with brain mets.  

IMHO this was a world class act to arrange to visit before Megan drove the 90 miles back home to work, retrieved some bare necessities (we had only expected to be there for a one hour appointment) and drive back down. My Captain America leisure pants accompanied by yellow socks almost seems fashionista trendy for hospital fashion. 

Maria Ionita, MD their neurologist gave me a full workup later that morning with the coolest Romanian accent I have ever heard and she also thought metasized lung cancer to the brain was the source of headaches and even the cause for my episode of “syncope” (fainting) she ordered an Electroencephalogram (EEG), ‘just in case’ to measure any unusual brain activity for epilepsy.

More importantly my ‘yellow sock’ designation was given an asterisk. I’m no Nathanial Hawthorne nor does a yellow sock have the same emotional impact as the letter “A” in “The Scarlet Letter”. However, in theory, yellow socks “quietly labels a patient as a potential fall risk person while protecting their dignity”. My asterisk enabled me to take escorted walks and to get up to visit the bathroom without triggering enough bed alarms to sound like a jail break.

The room 4111 at MedStar Franklin Square was amazing, including a futon bed for guests and a lazy boy recliner plus the best ever nursing chart "what is the most important thing for you today?"  - GO HOME!

When a Eucharistic Minister visited with Holy Communion, the Body of Christ was added to all the high tech tests and medications. Finishing the visit with the “Lord’s Prayer” my daughter quipped once the Eucharistic minister had left that while the 'body of Christ' was nice, a shot of the blood of Christ may have been a bit more helpful. “AMEN!” I exclaimed while offering her a high five.  

There was minor evidence of abnormal results from EEG. However as John Kottarahil, MD and hospitalist explained this was likely due to lung cancer metasized to the brain not epilepsy. I had been getting so impatient and preparing to argue with Dr. Kottarahil that I did not hear him say “I was being discharged” before launching into my reasons to go home. Megan suggested. “Dad shut up and listen!” Next thing I am struggling to disentangle myself from bed linen to leap up and hug Dr. Kottarahil. 

Armed with anti-convulsant medication, levetiracetam, a steroid called dexameththasonem, and oxycoden I was sent home (Megan driving, of course) on Friday.

Dr. Ionita encouraged a common sense approach to recovery. I should have someone drive me for the immediate future and change positions slowly (she would have not have been happy about my leap from bed to hug Dr. Kottarahil); both the medications and success with radiation treatment will reduce and or eliminate chance of future “syncope”. 

Radiation treatment for my lung cancer metasized to the brain begins on Monday at 2:40 PM with an appointment with Stephen J. Milito, M.D. at the Oakwood Cancer Center in Mechanicsburg, PA. 

David J. Perry, MD and Chief of Radiation Oncology, and Medical Director, CyberKnife Program for Franklin Square Medical Center called me after examining CT Scan and Brain MRI suggesting that in his opinion after a month or two of treatment at Oakwood Cancer Center he would consult on status of treatment of remaining lung cancer metasized to the brain including cyber knife option if necessary.

Nothing written should underestimate my apprehension and frankly fear of the immediate future. However I labeled my blog “My Lung Cancer Odyssey” because life is an adventure of learning, I alone cannot navigate the years. In addition I have learned that 40% of people originally Staged 1 lung cancer will eventually be restaged Stage 4.

Frankly I am encouraged by opinions after such apparent early detection of beginning radiation treatment for lung cancer metastasized to brain followed by chemotherapy for lungs. And unless there is a universal medical conspiracy to lie to me I am ready to go to radioactive war with lung cancer on Monday. 

Awakening Friday morning from the best night’s sleep in months I glance over to see Megan illuminated by the morning’s first light and sound asleep under the window on the guest bed as I hear the strains of Bob Carlisle’s “Butterfly Kisses”.

 “and i thank god for all of the joy in my life but most of all ...

with all that i've done wrong,

i must have done something right.

to deserve her love every morning”

Dr. Kottarahil had shared that hallucinations could be a side effect of both lung cancer metastasis and/or medication until radiation therapy shrinks tumors. Blinking away any hallucinations I discover I’m softy crying.

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

adenocarcinoma trifecta

Wow! Hearing that I had lung cancer the first time, 15 months ago, was devastating. Learning this morning that pathology from my recent EBUS biopsy of ‘Bob’ revealed my lung junk included a a trifecta of adenocarcinomas is cataclysmic.

With the river Styx in sight of my imagination I find myself drifting in the pool I have come to label as ‘soul cancer’. … Just a few more laps and I’ll morph back to warrior mode.

Pathology wants to compare and contrast recently discovered adenocarcinomas with tissue from original tumor on opposite lung. Targeted therapies I'm told can try to focus on what is exactly wrong with the cells, instead of killing normal, healthy cells too.

We, my daughter and I, have an appointment for next Wednesday in Baltimore to sit down with Dr. William Krimsky, Director of Interventional Pulmonology at MedStar Franklin Square Medical Center and not just see touch and feel the evidence but to hammer out the battle plan for my war to live.

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

health lung cancer

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 @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

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 @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

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 @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

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