Caregiving Yours ... newsworthy?

Increasingly "My Lung Cancer Odyssey" and "Caregivingly Yours" cross over ...

From “The Sentinel” Newspaper …

“MECHANICSBURG — For the past 24 years of his life, Patrick Leer’s own health concerns were of little consequence in the face of his wife’s multiple sclerosis …“

MECHANICSBURG MAN FIGHTS STAGE IV LUNG CANCER, CARES FOR WIFE WITH MS

Thank you Christen Croley and “The Sentinel” for promoting awareness of Lung Cancer, Muliple Sclerosis and upcoming Pennsylvania Lung Cancer Partnership’s Free To Breathe 5K Run/Walk on City Island on August 24th.

I also blog for multiplesclerosis.net

--

Patrick Leer

Health Activist:

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

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

slap that tech

(Sometimes Caregiving Yours intertwines with My Lung Cancer Odyssey)

Meeting with my oncologist to discuss my CT Scan of neck, chest, abdomen and pelvis …

... in ‘lay speak’ … after 6 weeks of chemotherapy two of the three tumors in right lung have shrunk and one has not grown … !!!!!!!!!

… hugging and/or hi-fiving anyone and everyone … it was time to pick up Patti for her annual mammogram …

‘family assistance’ was requested because Patti can be a most uncooperative patient, last year even slapping the tech ending the unsuccessful session.

Not much different this year except no one got hit …. Patti simply reinvented boundaries of cursing, swearing and yelling even with her own daughter trying to help before another mammogram bit the dust … 

A little time with the ducks, Papa John’s Pizza and Misto Shakes from Rita’s was next on the list  …

Picture collage captures me “preparing” in waiting lounge for my meeting over lung cancer scan and our post unsuccessful mammogram picnic in the park.

“We я Scans”

--

Patrick Leer

Health Activist:

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

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

chemotherapy

From MY LUNG CANCER ODYSSEY ...

... Time with Patti has been a constant frustration through this past month of chemo … down from at least 3 outings/visits a week we have been lucky to have one … ‘focusing on my cancer’ the absence of caregiving time gets in my head like negative energy.

Our daughter has been a godsend somehow creating opportunity between everything else going on … we had a fun afternoon Wednesday snacking on popcorn and popsicles in front of TV and catching some sun on the back patio … all the time with ‘no lung cancer’ since Patti’s MS dementia and cognitive problems prevent her from remembering.

Patrick Leer

Health Activist:

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

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

not just your everyday Saturday afternoon

"Pack Up Your Troubles in Your Old Kit-Bag, and Smile, Smile, Smile"

Saturday was not a MS friendly afternoon with temps sweltering at 94°F (34.4°C) and we had been invited to a graduation party by Patti’s niece and her boyfriend’s family.

First let me give a shout out to the Heckendorn family, your accessible home and hospitality ‘in our world’ was so much more than appreciated.

Uhthoff's Phenomenon seemed suspended as Patti was unaffected for almost 3 hours outdoors. Yes, her NMSS keck cooler helped plus the fan someone positioned near our table blowing gently across Patti  … frankly sometimes I gawked in disbelief.

Over the years these rare brief suspension of MS symptoms always create a MS time travel moment. Nothing changes Patti’s physical dependence but an ‘ascendant’ Patti engaged and enjoyed the party.

Even when feeding her I noticed MS dysphagia symptoms were asleep and not affecting chewing or swallowing.

When ‘MS speech’ finally broke through jumping into a pause in her brother’s toast … it was a sweet remark to make.

Personally finding a bowl of  'atomic fireballs' on the desert table was the pièce de résistance. 

Sometimes when lung cancer pushes multiple sclerosis up a hill, there is a smile waiting at the top.

-- 
Patrick Leer

Health Activist:

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

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

What a difference a day makes

Friday, pictured waiting for Endobronchial Ultrasound (EBUS) Biopsy outpatient surgery at MedStar Franklin Square Medical Center in Baltimore, MD. … I’M ALIVE

Yes, I wear my own custom name tag when under anesthesia it simplifies talking to me without having to try and read my wrist band. 

Today, Saturday, a collage of pics from 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.

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. 

Patrick Leer

Health Activist:

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

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

caregiving care giving care facility

oh say can you see

How do you monitor caregiving in the care facility era? A mega sized wall calendar keeps it ‘in my face’ every time I enter my kitchen. Glancing at it Sunday I was struck by the single outing with Patti last week, far off my norm of 3 outings per week.

Yes, I was a little busy with my own lung cancer health concerns, lung junk vs lung cancer. My mother’s voice echoes in my head, "is that your reason or your excuse?"

Outings with Patti’s Multiple Sclerosis dementia are never boring. While I have no lung cancer in her 'dementia world', buckling her in our wheelchair accessible van I coughed briefly only to have her remark “you sound terrible.” I know she means nothing but it unleashed an anxiety worm in my head.

We laughed as I paused while pushing Patti’s wheelchair by our lawn gargoyle. He appeared so sad playing his flute to the last bump of winter snow.  The anxiety worm whispered “your last snow”.

Returning Patti she was sooo slouched in her chair I considered asking aides to use the Hoyer Lift. Those anxiety worms have me more focused than usual on 'cheating death', plus Easter Week isn't helping. 

If I'm cheating death than full speed ahead. Initiating the one person unassisted transfer it was not the prettiest maneuver but Patti end up in bed safely. 

Awakening this morning to a couple inches of snow blanketing our neighborhood was a godsend.

While there is snow there is hope! 

Patrick Leer

Health Activist:

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

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

care facility multiple sclerosis caregiving

farewell to winter push and roll

Spouse caregiving for Patti and my own diagnosis of lung cancer collide on far too many days anymore. Trying to outlive lung cancer is somewhat like trying to outrun those proverbial headlights at the end of the tunnel. 

Yet paradoxically when actually hangin’ with Patti, I have no lung cancer in her Multiple Sclerosis dementia.

Attending her Care Plan Review today, I decided to include Patti. Usually I do not because if I want to actually discuss something, Patti’s MS dementia leaves her lost, clueless and wondering out loud who the hell are these people talking about.

One thing I have learned about advocating for someone with dementia is that you need to have boots on the ground weekly on a regular basis.

Anyway I was able to meet some new department heads and in closing when new Care Plan Review coordinator tried to explain to Patti who it was she was replacing, Patti interjected, “oh you mean that slut!”  … Which as the table erupted with gasps of laughter I had to smile at Patti’s sense of comic timing, always leave them laughing.

Next we were off for a 1 mile push and roll through a nearby park before heading downtown for some urban 1 mile push and roll.

2”+ of shoveable snow had fallen the night before which I enjoyed to no end. I love to shovel snow. By this afternoon the sun and warming temps had melted most of it for our farewell to winter push and roll.

Heading back to her care facility I fed her dinner in front of her TV, better than room service to her, before brushing her teeth, transferring her from her wheelchair to her bed with a one person unassisted transfer, and undressing/dressing her for bed.

While Patti certainly enjoyed our outing I had something even better, a lung cancer free afternoon. 

Patrick Leer

Health Activist:

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

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

care facility multiple sclerosis caregiving

Lung Cancer pushes Multiple Sclerosis

In our own mutant version of rock, paper, scissors, lung cancer will always push Multiple Sclerosis. Patti will never push me nor care for me nor even remember I have lung cancer.

Scanxiety is driving me nuts with my CT Scan looming this week for my 12 month follow up from lung cancer surgery.

Soooo I took a brisk two mile (3.2K) walk around the neighborhood with an audio book then headed over to pick up Patti for a push and roll on a gorgeous sunny 64°F afternoon.

Another mile and change pushing a wheelchair would give me 5K for the day.

Trails through woodlands and parks are OK but rarely can Patti actually see anything. The Army Heritage Trail dotted with tanks, helicopters, and more is MS visual impairment friendly. Even a legally blind person can see a tank.

Plus the US Army knows disability and most everything is wheelchair accessible unless of course it was meant to be climbed on. Unlike parks and such the trails at Army Heritage Trail are maintained regularly.

Pushing and rolling through US Military History we decided to detour into 1965 and the Battle of La Trang Valley. Visiting a Vietnam Fire Support Base we found their 105mm howitzer totally wheelchair accessible. Then it was off to WWI to play hide and seek in World War I Allied Trenches.

 Even though she does not appear to exert energy just being outside and rolling on different terrain amplifies her MS fatigue and she was ready to call it day.

Heading back for dinner at her care facility for dinner I fed Patti stuffed green peppers, mashed potatoes and apricots. When I stay to assist her with dinner it’s like having her own personal attended. No waiting before bed. No hoyer lift needed. After brushing her teeth and transferring her to bed with a one person unassisted transfer, one of the evening CNA knocked on the door to change her and give her a nightly sponge bath.

Patti is not only ‘non-ambulatory’ but unable to reposition herself in bed, or by definition ‘bedridden’. Now you have learned something new to kick off Multiple Sclerosis Awareness Week.

Where two CNAs are needed to complete the task whenever I am there it only takes one plus me. MS fatigue never enjoys waiting.

Patrick Leer

Health Activist:

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

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

care facility multiple sclerosis caregiving

caring and culinary arts II

Between bowls and bowl games and the NCAA channeling memory loss by erasing 14 years of football victories as part of its sanctions against Penn State University football, it was worth rummaging through storage for this 25 year old poster, “The Few … The Proud … The Lions”.  Patti is a Penn State alum.

Multiple Sclerosis visually impaired, my fellow holder got laughing so hard at my improvised description of the poster in my best sportscaster affected voice that I had to use her lap to support her end of the 1987 Fiesta Bowl victory poster. 

Of course to us the preeminent bowl is the bowl I use for my continuing experiments with caring and the culinary arts. Recently we tried reverting to a more conventional self-feed meal where food bites are similar, such as chicken tenders as the main entre.

Sure enough Patti reverted immediately to what I call ‘chipmunking’ her food. She just keeps putting pieces in her mouth forgetting either to chew or swallow. Unmonitored this can quickly create a choking danger. And this is why in the care facility era she has progressed to being fed in the assisted dining room rather than allowed to try and self-feed.

Soooo all the more I wanted to try reverting back to using varying shapes, textures, tastes and color of food pieces to try and keep her mouth rebooting (for the lack of a better word) with each piece and extending her ability to self-feed just a little longer. It worked like a champ just as it had last week. Today’s bowl featured Patti’s favorite cut peaches, black grapes, cut up strawberries, raspberries, and cut up chicken breast grilled in Italian dressing. No chipmunking! No choking! I wish I understood why.

With my own attention and time increasingly consumed by living with lung cancer, my lung cancer odyssey, I’m discovering that keeping all the balls in the air is a bit more challenging when suddenly I am one of those balls … and yeah it’s just a bit harder when Patti cannot remember. 

by Patrick Leer

BLOGS:

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

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

Technorati Tags: "Mulitple, Sclerosis", caregiving, "Penn, State", NCAA

unrequited caring

“Melancholy hearts flutter with unrequited care”

Restless by C Rossi-Kenyon

While caring may be unrequited the most important thing I must remember (because I can) is that for Patti it’s not a choice.

Progression of Multiple Sclerosis cognitive symptoms, including dementia like symptoms including memory loss, prevents her from dependable awareness, much less concern, about my health and well-being or anyone’s.

Progression of MS physical symptoms prevents her from physically caring for anyone (much less herself). 

Unrequited ‘love’, now there is something we all know about, but is love the same as caring. Who amongst us cannot tap that emotional reservoir of unrequited love? It can get crowded drinking from that keg of emotions sharing with yourself, Charlie Brown, and most of history’s romantic poets.

But what about unrequited caring?

What about caring but being physically unable to help? Trapped inside your body unable to help.

What about caring but being cognitively unable to help? MS is not the only disease with progressive memory loss. The Alzheimer’s Association estimates that there are 500,000 Americans younger than 65 with Alzheimer’s and other dementias. One out of eight people age 65 and older (13 percent) has Alzheimer’s disease.

My own diagnosis this year of lung cancer, surgery, and recovery rather dramatically accentuated all this. Yes, I find myself “tebowing” in gratitude for the care facility era of living with MS because unless reminded, including a brief refresher version, Patti remains oblivious in the now of the recent then. Patti was safe and unworried through my struggles – the way it should be.

Unrequited love? We can all rally around an anthem of she/he done him/her wrong. … Unrequited care? We can only imagine the care robbed by failing abilities of those who cannot remember what or who they care about.  

I may not be a smart man but it seems to me song writers and poets may have had it easier before modern medical science discovered it could prolong life but not the quality of living … and ‘somebody that I used to know’ was a choice and not progression of a medical diagnosis. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

cat shit cazy

Arriving to pick Patti up early on the morning of July 4^th from her care facility I was struck by the apparent contradiction of a laughing gregarious Patti and the progression of Multiple Sclerosis short term memory loss symptoms which had repeatedly erased repeated staff explanations for why she is up, changed, and dressed for an outing. “You’re all wingnuts!” according to Patti.

In route, experimenting with a question or two about my own diagnosis of lung cancer and surgery three months ago reveals she has no memory and/or resulting worry or concern.

Briefly I ponder the concept of memory loss and unrequited caring but decide that’s for psychobabblists over lattes.

Instead I decided to entertain Patti by sharing a recent revelation -  the secret to approaching the quarter century club as a MS spouse caregiver is … (dramatic pause)… I’m cat shit crazy.

I began my ramble by explaining that I have been reading about Toxoplasma Gondii in news headlines and found myself reminiscing …

I first heard of T. Gondii in 1987 when Patti was pregnant. Her OB/GYN raised the concern that some parasite thingamajig could transfer from cat feces to Patti to fetus (now known as our daughter Megan).  … With visions of the thingamajig from the movie Alien popping out of Patti’s stomach dancing in my head I had no problem assuming exclusive cat litter duty.

I just never realized that apparently the offer never ends kind of like offering to send peace keepers to Afghanistan.

Then after Patti was hospitalized with her first Multiple Sclerosis exacerbation in 1989 her neurologist also raised concerns about ol’ T. Gondii lurking in the cat litter because MS is an autoimmune disorder.

Bottom line I have heroically thrown myself on that grenade of the litter box over 9,000 times over the spouse caregiving decades and now apparently I am medically and certifiably cat shit crazy. – Explains everything!

“Explains everything … and more!”, Patti emphatically adds after catching her breath from laughing.

Curiously laughter seemed to reduce short term memory loss. Why not millions to study that instead of litter boxes? 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

no one deserves to die

“1 in 14 Americans will be diagnosed with lung cancer this year that is 12 of the average Facebook user's 172 friends. Of which only 2 will survive more than 5 years.”

I am one of those 1 in 14 Americans.

Will I be one of the few to survive more than 5 years?

“Many people believe that if you have lung cancer you did something to deserve it...”

The Lung Cancer Alliance recently launched a bold awareness campaign ... NO ONE DESERVES TO DIE

Help spread the word 

Patrick Leer

BLOGS:

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

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

making noise for lung cancer

Lung cancer is the number one cancer killer in America … this one reoccurring fact kept leaping out of the screen as I researched myths and facts about lung cancer.

Yet despite claiming more lives than any other cancer, lung cancer receives comparatively little research funding or even attention.

Lung cancer kills more women each year than breast, ovarian, and uterine cancers combined. But unless you live under a rock how can you miss the shelves of pink product packaging during breast cancer awareness month.

The American Cancer Society’s defensiveness over their silence and underfunding of lung cancer only seems to add to the incongruity.

Is it the stigma of smoking? … anyone even non-smokers can develop lung cancer. Lung cancer in ‘never-smokers’ is now considered the 6th most common cause of cancer deaths in the United States.

Firefighters and emergency responders are at increased risk of lung cancer. 


Sitting in traffic puts you at risk. World Health Organization reports that "diesel exhaust IS a cause of lung cancer" and gasoline exhaust is "probably carcinogenic to humans."

Is it an age thing? … lung cancer can strike people of any age including children.

So why is lung cancer overlooked and underfunded? … too much whistling past the graveyard and too little research  … or are too many advocates simply silenced by the low survival rate?

Our family is one of almost a quarter of a million families that will receive a lung cancer diagnosis this year.

160,000 Americans will die this year of lung cancer.

Lung Cancer Awareness (1 min 48 sec)

It’s time “to drag lung cancer out of the shadows and focus public attention on this cruel and unrelenting killer”  Leaders of the Lung Cancer Free World

related entry:

when caregivers get sick - lung cancer

Patrick Leer

BLOGS:

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

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

Dr. Troy Moritz, DO

To paraphrase the most interesting man in the world "I don't always have surgery, but when I do, I prefer Troy Moritz, DO. Stay healthy, my friends."

Previously in this journal I have written about my successful lung cancer surgery and recovery. Yet to call it mine is to leave out the major player in the story, the thoracic surgeon Troy A. Moritz, DO, PinnacleHealth Cardiovascular and Thoracic Surgery.

What impressed me the most about this man were his people skills. He took the time to know me before he cut which I believe better enabled me to return to who I was by using minimally invasive procedures.

Surgery is scary and maybe more so to those in the waiting room because the unknown is even scarier. Dr. Moritz made the time when I was unconsciously oblivious to keep our daughter more than informed almost feeling involved. While I remember nothing, she got to see pictures of his hand in my lung. J

Enough of me, how about I let you hear and see him speak for himself in his 2 minute You Tube video:

Patrick Leer

BLOGS:

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

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

Return to normalcy

Wednesday, two months after successful lung cancer surgery, everything came back together for the first time. Our world returned to its normalcy.

In other words life is now just as it was before surgery, only 8 weeks later. I have no loss of abilities, restrictions, or pain.

Why should this benchmark start any different than any other caregiving day as I spent too many hours on the phone and on hold working and stressing as Patti’s POA on looming changes to Patti’s Medicare supplemental insurance?

With the cooler part of the day wasted it was time to mow the lawn, walking approximately a mile while pushing a 60 lb (27 kg) mulching power mower in 86˚F (30˚C) temps.

Next I drove to pick up Patti. Exiting her care facility assisted dining room she was quite sure her diner had been “bangin” but had no memory of what she had just eaten.

Heading out to a nearby park for a push and roll (a gentlemen never discusses a lady’s weight but let’s say Patti weighs more than a lawnmower) I pushed her for a one mile loop stopping for some hamming it up in their amphitheater, “all the world’s a stage”.

Then the pièce de résistance (insert drum roll)

… a one person unassisted transfer of Patti from her wheelchair to her bed, followed by undressing and changing her for sleep.

Unlike the miles of pushing, transferring is about lifting non-ambulatory weight. Even after transfer, while many people have changed and dressed an infant, a non-ambulatory adult is the exact same principal just exponentially more upper body strength involved.

It was a godsend that the care facility era was already in place before surgery and recovery took me out of the daily equation for two months. Patti was safe and completely cared for.

Though it’s a bittersweet return to normalcy for me as Multiple Sclerosis memory and cognitive symptoms confound Patti even realizing or remembering any loss in outings or absence of me transferring her to bed the majority of nights each week.

Normalcy? An interesting concept isn’t it?
Patrick Leer

BLOGS:

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

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

travels with a faux down vest

“A journey is a person itself; no two are alike.”

John Steinbeck, ‘Travels with Charley: In Search of America’

Visiting a neighbor and recent spouse caregiver widower we share surgery stories. With 9 hrs of back surgery and basically a titanium spine his trumps mine, though bittersweet, of course, since home caregiving for a spouse with RA (rheumatoid arthritis) made his surgery previously impossible.

Wearing my faux down vest to protect my ribs while driving, my return to my ‘road rat’ self was MCing the Prince George’s County Maryland Special Olympic Spring Games.  As if divine coincidence nothing could have been more motivating and rewarding than to be surrounded by heroes.

Returning I stopped to visit old friends. Surprised by the home accessibility modifications I realized I've been too wrapped up in my own life. A manly, man hug can often be an awkward dance until ALS (amyotrophic lateral sclerosis) prevents one of you from lifting his arms; I learned what it is to hug a friend.

Pushing Patti around an “Art Walk”, she could enjoy the magnitude of the art of an Italian street painter turned sidewalk artist. However since much of the art was staged in restaurants we soon disappeared into our favorite, Helena's Chocolate Cafe & Creperie for dinner. A chocolate raspberry crepe is art in our book!

With each lawn mowing and push of Patti’s wheelchair I feel the muscles strengthening even though Patti’s Multiple Sclerosis memory symptoms prevent her from remembering whether outings have increased or decreased

Driving three hours in the rain to visit cousins in New Jersey I sit down to dinner with two other cancer survivors. Still weird to think of myself as a ‘survivor’ and frankly I ‘am not worthy’ contrasted to my youngest cousin who was my inspiration through my darkest moments. Many kids turn 6 every year but this guy also celebrates his 5^th year cancer free since battling liver cancer and all the while living with Muscular Dystrophy.

After all how can I say that someone inspired me if I do not let them climb all over me and my ribs to really find out if they are healed after lung cancer surgery?  … Seems I do not need that faux down vest anymore.
Patrick Leer

BLOGS:

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

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