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 @ http://caregivinglyyours.blogspot.com/

2 comments:

  1. Glad your radiation is over!! And yes, when trying to poke a stick at cancer, it can lead to some very interesting celebrations!! For example, not long after my chemo was finished, I started taking a low-dose 81 mg aspirin, buying a bottle with 500 for a mere $3.65. My thoughts at the time were that I would probably never see the 500th one, or ever feel the need to purchase a new bottle. The celebration is I only have a few left in the bottle and need to buy more!! Wonder if they are still $3.65??

    FYI, I think of you daily!!
    Jackie aka Bama

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    1. Thanks Jackie!You have no idea how much I can relate to your bottle of 500 daily asprin. I smile from ear to ear when I buy something that could or did take a year to consume since DX. Funny how time changes.

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