the magic fountain

I have lung cancer I am not broken.

For nearly a quarter century unpaid family caregiving has been my choice. So when I noticed that Facebook chatter between cousins in Northern New Jersey seemed like sending up a flare for help earlier this week I did not hesitate. 

I drove 320 miles round trip to facilitate my young cousin’s transfer from Goryeb Children's Hospital to PSE&G Children's Specialized Hospital just in case a familiar face was needed. 

Following a fall down some steps my young cousin suffered a severe Epidural Hemotoma and a Subdural Hemotoma. For weeks his parents and grandparents have basically camped outside PICU.

With both grandparents and his Mom down with flu like symptoms and his Dad basically out on his feet … my familiar face could be helpful with transition for the little guy. 

A little backstory, last March as I was concealing my own looming lung cancer surgery from everyone except my daughter, this same young cousin was undergoing brain surgery from an unrelated fall. 

As I lay in my hospital bed recovering I had to ask my daughter to sign in to my Facebook account, let me know what was going on and comment as me. 

Thank an Irish God we both were sent home on St. Patrick’s Day and my end of the ruse could end. 

Two brain injuries and surgeries should be enough for anyone much less a 7 year old – yet the little guy not only has Muscular Dystrophy but is a 5 year liver cancer survivor and most importantly inspires the best in everyone around him.

Children’s Specialized Hospital claims it is the largest pediatric rehabilitation system of its kind in the nation and is the preeminent provider of rehabilitation services for children with special needs.

Since lung cancer surgery and recovery, some people I used to know have weighed, measured, and found me wanting. That is their mistake. I am not broken. Feeling wanted and feeling needed is part of living. 

Plus how many hospitals serve Irish Nachos in their cafeteria? 

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

Hanging in the chemo lounge

For 11 months I’ve quested for others like me, lung cancer surgery survivors … turns out I was looking for survivors in all the wrong places. 

Reading about a lung cancer survivor program elsewhere, I decided to call my oncologist, Margarita Gareis, MD with Andrews and Patel Associates. 

An oncology nurse in their chemotherapy department was aware of a patient in their other office who had put up a Lung Cancer Awareness bulletin board. She would call and ask if she would talk with me.

We set up a rendezvous for Monday in the chemo lounge as my contact was getting a saline treatment and would have time to talk. Originally diagnosed with Stage 4 and given just months to live, she is alive and kicking beginning her 4th year.  

My preconceptions of a chemo lounge could not have been any more wrong.  Lazy-boy recliners lined one wall with tables and space between them for IV drip poles. Contrasted to the somber even hushed protocol of the waiting room, the chemo lounge exploded with life. It was the epicenter of survivor support; chatty and full of laughter and noise.

Questions always fall out of my mouth. Yes, if one desires privacy there are private chemo rooms available. 

Looking around I noticed and inquired about the absence of barf bags like on airplanes. Doesn’t chemo make you nauseous? Smiling patiently survivors explained how some of the bags contained anti-nausea medication.  

Then I noticed and commented on how the varying colors of chemo bags hanging from the poles gave the lounge an almost festive atmosphere.  

Wi-Fi friendly there was seating along the opposite wall available for visiting family and friends. 

Discovering that I was seated between a 4 year Stage 4 lung cancer survivor and a 10 year Stage 4 lung cancer survivor, I fell to my knees and in my best impression of Wayne & Garth from Wayne’s World when they meet Alice Cooper began my “I am not worthy” routine. 

As if a twofer visit was not enough by attracting attention I hit the trifecta as a 2 year lung cancer surgery survivor in for a follow up appointment wandered by.   

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 harrisburg pennsylvania

snow tubing with lung cancer

“Do you think after another run that your 5 year old self will be ready to leave,” quipped my daughter.

After almost 4 hours of snow tubing on Tuesday at Ski Roundtop and probably 50 runs. I guess I was done promoting what lung cancer survivors “can do” in their overtime year. 

I use my lungs for … 

screaming with joy about being alive

and making some noise about lung cancer awareness.

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 harrisburg pennsylvania

you have lung cancer

Forget how Hollywood and TV misportrays the moment in time ... can anyone forget the first time they heard those words, "you have lung cancer"? Time itself is suspended.

I can remember every detail of that damn office on Feb. 9th, 2012 as my daughter and I nervously talked around lung cancer while waiting and waiting and waiting. Finally Timothy Clark, MD arrived and after introducing himself to my daughter sat at his computer terminal and pulled up my biopsy results.

“Malignant” and “tumor” were the only two words to explode out of the rest of the verbal noise.

“Well-differentiated adenocarcinoma, favor lung primary” was the actual diagnosis. There were more words bouncing around in the noise “CK7 and TTF are positive, CK20 is negative”. Or maybe they were in my copy of the pathologist’s report I stared at later.

My first thought was to glance at my daughter the ONLY person on earth I trusted to keep the results secret and who actually wanted to be with me that day … our eyes spoke.

Strangely I even found myself smiling at how interjecting my wife’s Multiple Sclerosis dementia and short term memory loss into the moment would have played out – she’d forget why we were even there and just want a ciggie. J

As a spouse caregiver of 22+ years I was once again impressed with the accuracy of my lay person self-diagnosis and had to resist jumping up to hi-five my pulmonologist before returning the agenda to “how long do I have to live”? 

I can be dizzying with the stream of consciousness way I ask questions … but it’s me. 

Leaving my daughter and I alone in his office in case we wanted some private time, we agreed we both were “hoping it was benign”. 

Somehow I avoided the tacky Lion King exchange between Mufasa and young Simba about looking up at stars (and I paraphrase) “whenever you feel alone, just remember I will always be there to guide you”.

We never met with him again due to his financial legal problems and in retrospect not having a pulmonologist in your corner is not the best idea beginning a lung cancer odyssey … however having my daughter’s optimism in my corner was better than the best of possible ideas.

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 harrisburg pennsylvania

pneumothorax anniversary

The loneliest feeling in the world is being in a hospital bed for the first time in your life and no one really knows you are there.

OK one person, my daughter and co-conspirator in silence, knew. However as my blood pressure spiked to 200 over 120 at midnight I was freaking out. Would I even have the time to call her and say good bye?

Part of why I am sharing is that only my daughter has ever seen behind the curtain of the beginning of my lung cancer odyssey.

A year ago, I had an outpatient procedure CT Guided Needle Biopsy of my lung performed by Jay Goodman, MD an interventional radiologist working out of Holy Spirit Hospital.

At the risk of oversimplification a needle biopsy of a lung is kind of like sticking a pin in a balloon. You wait while the lung seals itself and reflates. After multiple x-rays, eventually I was sent home and instructed to return the next day for one last x-ray.

Returning to the hospital for the follow up x-ray I learned my lung had partially collapsed or in big medical words - pneumothorax.

I was neither experiencing pain nor shortness of breath. However since I had not fasted for anesthesia I was about to “know” pain since my chest tube could only be inserted under local anesthesia and believe me a chest tube is a helluva lot larger than a biopsy needle.

To Dr. Goodman’s credit the first thing he did was say “I’m sorry”.

Hospitalized overnight what were the odds that the only other pneumothorax patient in the hospital would be my roommate? While my chest tube vacuum was whisper jet quiet his was a non-stop loud sucking sound.

We made for an odd couple with me desperately seeking anonymity since my story was about being biopsied for lung cancer, while his story involved blowing up his lung pumping iron at the gym recovering from pneumonia.

To this day that night and morning was the most painful experience of my life with that damn chest tube rubbing against my lung.

The morning of Feb 7^th, a year ago, as I watched snow falling outside my hospital room window memories of my life swirled in a snow globe ... then my adult daughter arrived with chocolate milk and saved my mind.

This morning, and still alive a year later, I returned the favor bringing her a chocolate milk. 

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 harrisburg pennsylvania

the naming of lung lymph nodes

Long, long ago in a galaxy far, far away my Mom, a psychiatric nurse, taught me that naming the things that scare me made them less scary.

Entering my overtime year of Stage 1 Lung Cancer, radiologist’s impressions of lymph nodes in my right lung scare me.

For example when I named my reported ’13 mm right-sided subcarinal adenopathy’ “Bob” it became less scary.  Bob seemed to enjoy playing hide and seek with scans and radiologists. He was there one time and gone the next before fading into right lung mythology.

In July, 4 months after successful lung cancer surgery to remove the tumor from my left upper lobe, multiple sightings of “Medea” and “Hi” were reported in the opposite lung. “Medea” (aka mediastinal) and “Hi” (aka hilar) did not meet size criteria, in a sense they were D-List lymph nodes. The CT scan was considered NED (no evidence of disease).

My next 4 month follow up CT scan in November was labeled from “not bad news” to “inconclusive” due to respiratory inflammation from chest cold.

Bottom line “Medea” was off on vacation. A new big and bad “Hi” (of 17 mm) was reported seen in my right lung twice the size of her previous D-list cousins hanging out with a new “Bob” (of 14 mm).

The question became is this observed opposite lung lymphadenopathy simply lymph nodes doing what they are supposed to do and reacting to respiratory inflammation or a harbinger of something worse.

A CT scan “do-over” was scheduled for Dec 31 to make use of my health insurance before my high-deductible reset … unfortunately that never happened.

Now I mumble banishing spells as I drift into sleep at the lymph nodes that go bump in my lung.

Patrick Leer

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

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

health lung cancer harrisburg pennsylvania

remembering Super Bowl Sunday 2012 and lung cancer

For six weeks through the holiday season I had concealed from everyone my fears and anxieties through a parade of scans as my nodule labels grew ever more menacing from vague to spiculated to suspicious.

Finally I was scheduled for CT Guided Needle Biopsy of my lung as outpatient surgery at Holy Spirit Hospital first thing in the morning after the 2012 Super Bowl.

At the eleventh hour I was informed I would need someone to drive me home and monitor me. … No, no, no! No one was supposed to know.

Fate, hand of God, or whatever … our 23 year old adult daughter was living at home. Could I turn to this young person who already has one parent in a care facility with severe Multiple Sclerosis?

Megan and Dad April 1988

Soooo on Super Bowl Sunday 2012 after orchestrating yet another facade of transporting my wife to her parents' house then back to her care facility, I sat down with my daughter to explain my fears and why I had concealed what I was going through from everyone including her.

“Dad, it’s OK. I want to be there!” … and with that simple absolution my daughter became my co-conspirator in silence for the next 6 weeks.

Somewhere in a dusty theatre in my mind an old sports movie played, “winners always want the ball when the game is on the line” … I remember desperately repeating to myself, real men don’t cry. 

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 harrisburg pennsylvania