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/