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.
.jpg "MedStar Franklin Square Medical Center")
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
.jpg)
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. .jpg)
.jpg "Andrews & Patel Associates Camp Hill office")
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.jpg "lilacs from yard")
.jpg "linear accelerator")
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.jpg "mask for external beam radiation therapy")
health
lung cancer
harrisburg
pennsylvania.jpg "MedStar Franklin Square Medical Center")
.jpg "yellow \"fall risk\" socks with Capt. America leisure pants")
.jpg "rm 4111 MedStar Franklin Square Medical Center, Baltimore, MD")