from caregiving to survivorship

 “O Lord, Bless the surgeon’s hand. Comfort all who wait for news.”

Though ‘all who wait’ was still only our daughter, we were committed to our conspiracy of silence until after surgery. The evening before was spent as any caregiving evening as an outing with Patti unaware of either diagnosis or pending surgery.

Finally it was time to attack the cancer. In almost 4 hrs of surgery I behaved myself under anesthesia and surgeon performed a wide wedge resection of the lung lobe removing cancer and surrounding tissue, spreading the ribs, and going into the lung lobe to get the lymph nodes.

Awakening in ICU, I actually felt great – no pain at all! “It’s the epidural” explained my nurse.

My epidural was my BFF for two more days of pain free recovery. My only previous association with epidural was Patti’s birth of Megan but I have no problem endorsing, ‘real men get an epidural’. I was even able to walk around ICU within an hour of awakening.

On the third morning (first without epidural and I felt like I had been run over by a truck) and St. Patrick’s Day morn’ surgeon stopped by to say good bye, he was sending me home and by the way biopsies were back – all the lymph nodes and surrounding tissue from wedge tested negative for cancer. Yabadabadoo!

3 and a half days earlier I had transfered Patti from her wheelchair to her bed and wished her good night a MS spouse caregiver (maybe a quarter million of us) now I walked out defined by ‘surviorship’, one of more than 10 million cancer survivors in the United States.

Though honestly, most important to me was that I was able to complete all my ‘activities of daily living’ by myself while recovering at home for the next month and should be back to full abilities then.

Yes I have some restrictions on lifting for now but thankfully our daughter is at home.  

Stepping into the void, she had picked up Patti from her care facility and had her home for a family outing, one week to the day since our pre-surgery outing.

Previous related entries ...

when caregivers get sick - lung cancer  Mar 24

when caregivers get sick – do you glow?  Mar 25

when caregivers get sick – man plans, God laughs Mar 26

(PS The pictured painting "Rays of Hope" , is a tribute by Karen Bennett to her aunt Ruth, who kept hope alive while watching, caring for, and losing her husband and only child to cancer. 2012 Expressions of Hope Calendar, March)
Patrick Leer

BLOGS:

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

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

when caregivers get sick – man plans, God laughs

“Man plans, God laughs.” Yiddish proverb

An outpatient procedure, CT guided needle biopsy, was scheduled for the Monday morning after Super Bowl.

Informed I would need a ride home since conscious sedation was involved actually became a proverbial silver lining.

Sooo Super Bowl weekend I broke the news and the truth to our daughter. I decide to stop trying to be my Dad and be me. Megan has been at my side every step of the way even as a coconspirator in silence.

Outpatient pre-surgery famous last words #1 – “Less than 10% chance of anything going wrong” … well, 'I am the 10%' ending up with a collapsed lung (pneumothorax) and hospitalized overnight with a chest tube inserted to inflate lung. Waiting to be discharged the next day I watched the last snow fall of the season from my room window.

Now a ‘we’, we learned the biopsy revealed the nodule was malignant and it was off to an Oncologist and Thoracic surgeon. They felt a look and biopsy of lymph nodes would improve treatment options including maximizing surgery options.

Another outpatient procedure, an Endobronchial Ultrasound (EBUS) Biopsy of Lymph Nodes was scheduled for March 1.

Outpatient pre-surgery famous last words #2 - “Less than 1% chance of anything going wrong” - well, 'I am the 1%' as my heart beat plummeted and stopped beating for 5 to 10 seconds during the procedure.

Revived and admitted to the cardiac unit overnight and after a thorough cardio work up I was released the next day and informed that 1) I DID NOT have a heart attack and 2) my heart was in excellent condition. (‘Probably in better shape than the surgical team you freaked out’, quipped one cardiologist.) … Best medical guess – vasovagal response.

After a night’s sleep at home I returned for a nuclear cardiac stress test which I rocked and was cleared for lung surgery.

Unanswered – no heart beat for 10 seconds; do I qualify for zombie status? Or was I just thrown back like an undersized fish? Sorry, no lights or tunnel to report, I slept through it all.

________________

(to be continued … since its inception Caregivingly Yours entries have courteously not exceeded 350 words and my ribs ache from surgery just trying to get these out)

previous ...

when caregivers get sick - lung cancer  Mar 24

when caregivers get sick – do you glow?  Mar 25

continued ...

from caregiving to survivorship Mar 28

Patrick Leer

BLOGS:

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

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

when caregivers get sick – do you glow?

"Families may be one accident, injury, or diagnosis away from bankruptcy." U.S. Senator Sheldon Whitehouse (D-RI)

As EOB (explanation of benefits) statements began to appear from ever more sophisticated and expensive tests I realized cancer was going to be expensive even with medical insurance. Our family resources had already been swamped living with a quarter century of one major diagnosis, Multiple Sclerosis. Can any family survive two?

Blinded by MS tunnel vision I had never noticed how many stories in newspapers recounted the collateral damage of cancer such as a family hosting a fundraiser at a local church to try and raise $6,000 just to pay their yearly medical insurance deductibles for their son’s cancer treatment.

Why was I keeping it all to myself? - Almost 15 years ago my Dad died of Pancreatic Cancer.  He chose to keep it hidden as long as possible, dying less than a month after friends and family were told. Like father like son I originally chose to keep it secret.

Keep in mind I physically felt great. Caregiving was a comfortable masquerade focused on Patti. Glancing back at this blog from that time, I was writing about outings with Patti and even - exercise, fitness, caregiving for Multiple Sclerosis.

More importantly - what about Patti in the now, today?

Megan, our daughter, brought Patti home from her care facility for dinner earlier this week. She had not seen me since our outing the previous week before surgery. Though Patti’s parents had visited and ‘broke the news’ the night before, Patti remembered nothing. In response to Megan telling her while driving she only asked "he's not dead?" and when I personally recapped the story again later, she focused on x-rays and radioactive scans, asking only "do you glow?" J

When questioned about me the next day, after two days of memory reinforcement, she responded "I think he had lung surgery".

I remember sharing Patti’s diagnosis of Multiple Sclerosis, almost 27 years ago, surrounding her like a sentinel. Decades of MS has robbed Patti of physical and mental abilities. Long term caregivers will have no caregivers. That's just the way it is.

________________

(to be continued … since its inception Caregivingly Yours entries have courteously not exceeded 350 words)
continued ...
when caregivers get sick – man plans, God laughs Mar 26

from caregiving to survivorship Mar 28

previous...
when caregivers get sick - lung cancer Mar 24

Patrick Leer

BLOGS:

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

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

when caregivers get sick - lung cancer

"Talk by a poet who has not been in the moon is likely to be dull.” Mark Twain

Like Twain’s spurious poet, I was guilty of dully sharing the statistics of risk in long term caregiving.  Yes, the stress diminishes my immune system and increases my chances of cancer and chronic illness. Yes, my life expectancy will be shorter and my mortality rate higher. After all I have been a spouse caregiver for over 22 years.

No longer am I a dull poet of the risks in long term caregiving -  three days before Christmas a chest X-ray revealed a ‘nodular density’ in my left lung.

Actually I was driving with Patti when my cell phone rang. Pulling over I tried to juggle a life altering conversation while avoiding alerting much less alarming Patti. Shamefully I was grateful for Patti’s Multiple Sclerosis short term memory loss. Caregiving never really gives you even a moment to focus on yourself.

At this point, sometimes a story is best told by taking a brief peak at the last chapter first …

St. Patrick’s Day morning I was discharged from the hospital three days after successful surgery for lung cancer. Now home recovering it’s time to share because ‘my story’ is now part of ‘our story’.

Back to Dec 22 between holiday schedules and the methodical plodding of medical testing it would be 27 days before I got to sit down and talk with a medical professional.

That ‘vague nodular density’ on an X-ray begat an 8mm ‘spiculated nodule’ on a CAT scan which begat an 8mm ‘irregular nodule, with an SUV max of less than 2.0’ on a PET scan. 

Feeling abandoned by the medical profession, the Grim Reaper moved into my head and became my new BFF. Of course I couldn’t sleep and the Reaper and I spent the holidays and the month of January surfing the Internet with my copies of each test and radiologist’s impressions trying to determine how long I had to live.

Simultaneously, I could not comprise on caregiving for Patti. Concealing everything from everyone, I stole only the moments to pause and treasure each ‘last’ Christmas, ‘last New Years’, etc.

I began living two lives.

________________

(to be continued … since its inception Caregivingly Yours entries have courteously not exceeded 350 words)

Continued ...

when caregivers get sick – do you glow? Mar 25
when caregivers get sick – man plans, God laughs Mar 26
from caregiving to survivorship Mar 28

Patrick Leer

BLOGS:

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

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

“This chili is bangin’!” – MS and Speech

Every day is MS Awareness day in our story.

Enjoying some of my home made chili at home earlier this month, Patti blurts out “this chili is bangin’!” Laughing, I couldn’t help but wonder if ‘gangsta wannabees’ had taken over Patti’s care facility. Certainly none of us had ever introduced the slang into conventional dinner conversation. Is this the new jargon of care facility life in 2012?

More than likely just MS Speech. Not one to write technical entries our story of MS Speech for MS Awareness Week/Month is best told through trial and error memories we lived and laughed through to get here.

Speech & Voice Multiple Sclerosis October, 2009

"a church moment" March, 2006

... Patti cannot always control speaking volume and the more she tries the more opposite it can become

“Horton Hears A *&#!” March, 2008

... “The frontal lobes are very important in regulating our behaviour. … People … fail to inhibit their innermost thoughts and do not modify their comments according to the situation.” Cerebral Function Unit, Carer’s Support Group, Salford, UK

"Hello!You little brat!" December, 2008

... In a recent study of MS patients, … 62% reported speech and voice impairments

cursing and swearing and Multiple Sclerosis, oh my! July, 2009

... Cursing and swearing is different than language, activating the emotional centers in the right side of the brain, rather than the cerebral communication centers on the left.

Thou Shall Inspect What Thy Expect October, 2004

... From the National Multiple Sclerosis Society “Speech disorders are fairly common in MS. Lesions—damaged areas—in different parts of the brain can cause several types of changes in normal speech patterns. …Long Pauses … Words are Slurred … Swallowing Problems …”

Regardless of whether MS Speech is a disorder, an impairment, a symptom or whatever - after 22 years of spouse caregiving if Patti calls my chili bangin’, that’s a compliment in my book!

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

UNLESS someone like you cares - wheelchair accessibility

Picnicking with McDonald’s french fries under sunny skies on a 66˚F (18.8˚C) afternoon only got better when followed by a movie and popcorn. In Patti’s world, after two decades of Multiple Sclerosis sometimes eating for taste trumps eating for health.

While dysphagia is always a clear and present danger at least these comfort foods require no assistance for self-feeding and are easy to monitor. Empowerment can also be a treat.  

"The Lorax" was 90 minutes of pure enjoyment, practically an animated musical. Of course there was a 'message' about protecting the environment but as with all Seuss stories the telling of the story is just so darn entertaining and fun.

While we are blessed to own a wheelchair accessible van that empowers Patti’s freedom, not everyone is. Perhaps even most families caring for some needing a wheelchair do not.

With budget cuts looming, people in wheelchairs, their caregivers and families that depend on subsidized public accessible transportation or contracted providers face an unknown tomorrow. Everything from access to medical care to independence to access to family and friends could shrink.

Like everywhere, Pennsylvania’s budget in these economic times is created with scissors. Gov. Corbett is proposing $620 million in cuts to human services programs; $422 million from basic education on top of the $765 million cut from last year’s budget, 20% cuts to colleges, 35% from State parks, and ‘zero funding’ for public transportation.

Yet this is democracy and these are ‘proposed cuts’ it is time for all interested parties to speak up and be heard. 


MS Awareness in particular is not about one month or one week a year or glitzy ad campaigns. It's about keeping your eyes, ears, and mouth open.

That’s why I found this most disturbing for it is the double whammy of cuts to social services and zero public transportation funding that could most affect the lives of those needing wheelchairs. “Able-bodied people had unfettered access to stairs and elevators that lead to Gov. Tom Corbett’s office on Wednesday. People in wheelchairs did not.” Disability activists targeted in enforcement of Pa. State Capitol's restricted access policy

"UNLESS someone like you cares a whole awful lot,

nothing's going to get better: it's not."

“The Lorax” by Dr. Seuss

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

deafening silence of Multiple Sclerosis awareness

Unless we stumble over it, we literally and figuratively see what is in front of us.

Most people might never see Multiple Sclerosis because the general population has <1% chance of having MS.

Additionally, of those diagnosed with MS the majority may have symptoms “invisible” to strangers.

Prevalence invites awareness and MS remains rare especially contrasted to cancer, heart disease, Alzheimer’s, stroke, or diabetes. Can the sound of one voice in 700 (the statistical incidence of MS) hope to be more than a silent scream?

Soooo, am I the only one noticing that Multiple Sclerosis prevalence is totally out of statistical whack when viewed in the context of our current US Presidential Primaries.

Ann Romney, wife of Mitt Romney, was diagnosed with Multiple Sclerosis in 1998.

Marianne Gingrich, former wife of Newt Gingrich, reports Newt asked for divorce just months after she had been diagnosed with Multiple Sclerosis.

And on the other side …

US First Lady Michelle Obama was raised living with Multiple Sclerosis, her father had MS.

This is an extraordinary and exceptional alignment of MS awareness, yet do you hear it?  

27 years ago I, like most, had never seen or even heard of MS. My awareness began when I saw Patti’s tears and heard her sobbing, “the call”. “…The caller explained Patti was crying uncontrollably and could I come get her. … Upon arriving I found Patti still crying alone in an examination room. Her neurologist appeared and explained he had told her that “she probably has Multiple Sclerosis…”

Like comets that travel through once in a lifetime perhaps never again will Multiple Sclerosis be a part of the lives of so many major players on our public stage.

In the USA, the Month of March is designated for Multiple Sclerosis Education and Awareness. Open your eyes and ears.

National Multiple Sclerosis Society MS Awareness Week 2012

Multiple Sclerosis Foundation MS Awareness Month 2012

Multiple Sclerosis Association of America


* * * * * * * * * UPDATED

Following death of former “Monkees” star Davy Jones of a heart attack on Feb 29, The Hollywood Reporter reports Jones' family is asking for donations to be made to the National Multiple Sclerosis Society or a local chapter. Jones' niece died from complications stemming from multiple sclerosis 17 years ago.

Maybe the silence isn't so deafening after all. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

when more than homecare is needed Multiple Sclerosis

From Multiple Sclerosis Foundation’s MS Focus Magazine, Winter 2012 (pages 43-45):

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pg 44

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pg 45

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

dental health Multiple Sclerosis

Multiple Sclerosis does not make dental care easy.

Long story made short Patti was less than cooperative at her last failed checkup. Fortunately there is a positive end to this story.

Believe it or not there’s at least one dentist who prefers the freedom of not having an office practice, traveling between care facilities and nursing homes.

Rather than just leave it alone he called me with a plan.

What if … he revisited after Patti had been given a dosage of Ativan/Lorazepam beforehand, the proverbial “chill pill”. Adding me to the mix could improve success because in the care facility era “no means no” for professionals, only family/POA can ‘persuade’ a patient.

Arriving I transferred Patti to a geri-chair, a recliner on wheels.  I was blown away by the mobile dentist office set up, it had everything except musak.  (Rummaging about I found a boom box and a CD of new age music and fixed that.)

Patti (under the influence of Ativan) was a model patient and the dentist was a godsend. Patti’s dentist prefers the life of mobile dentistry. He loves its freedom and its focus on patients.

Patti’s teeth were cleaned, polished, and cavities filled. Only the high speed drill which sprayed water seemed to agitate her. I quipped it was just the tooth fairies waterboarding her. “Little bastards” she mumbled and with a smile her calm returned.

Afterwards, we talked about new solutions because status quo is not working. Apparently an electric toothbrush is a win-win because in a pinch it can be used simply with water, eliminating the whole rinse and spit challenge. Regardless of MS and all its challenges, dental care cannot be trivialized. Brushing teeth is social behavior. Visiting or outings should include teeth brushing rather than depend on staff, remember staff can be told ‘no I don’t want to’. Thinking outside the box is a must.

Since it was 60˚F (15.6˚C) afternoon in February, and the geri-chair fit in our wheelchair accessible van, I took Patti to the park in her rolling recliner for a reward before a well-deserved afternoon nap.  

Related previous entries:

a trip to the dentist (Jan 2006)

teeth brushing smiles (Feb 2009)

dental care Multiple Sclerosis (May 2010)

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Chang Shan vs Multiple Sclerosis

"A new study suggests the Chinese herb known as Chang Shan selectively weakens the runaway immune response implicated in many autoimmune disorders, such as rheumatoid arthritis, multiple sclerosis, and psoriasis."

As we begin this 27^th year since Patti’s diagnosis of MS, I wish I could embrace hope with the enthusiasm of a quarter century ago.

Now before everyone goes digging up neighborhoods, nurseries, and botanical gardens for roots of blue evergreen hydrangea let’s take a moment.

At the risk of oversimplifying … Our healthy immune system depends on T Cells. ‘Rogue’ T Cells have long been considered a culprit with MS. ‘Rogue’ T Cells cannot distinguish friend from foe and target the body’s own myelin as if it were a bacteria or virus. Finding a way to suppress the ‘rogue T Cells’ without suppressing all T Cells has been the challenge.   

Back in July 2009 …

Compound from Medicinal Herb Thwarts Turncoat Immune Cells “A small molecule (halofuginone) better known for its anti-malarial properties can block the birth of the immune cells involved in autoimmune diseases without blocking crucial infection-fighting cells”, report Harvard Medical and Dental School researchers.

Now in Feb 2012 after peer review and further retesting ...

“We recently demonstrated that halofuginone (HF) …inhibits the development of TH17-driven autoimmunity in a mouse model of multiple sclerosis” Halofuginone and other febrifugine derivatives inhibit prolyl-tRNA synthetase

With publication in Feb. 2012 Nature Chemical Biology, associated media and more are picking up the story.

Again at the risk of oversimplification, Chang Shan is the herbal form, Halofuginone is the synthetic.

Interestingly back in 2003, SunCatcher Herbs, developed Sclero-Eze, a herbal supplement that uses Chang Shan as a base. Their website announces “may Treat - Rheumatoid Arthritis - Scleroderma - Lupus - M.S.”

From a quarter century of experience I can share that breaking research on mice can take a decade before availability to humans, if ever. On the other hand while the herb is available it was not the herb that was tested.

However, no one can imagine another’s hope.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Valentine’s Day Memories: good, bad, and ugly

As a caregiver spouse Valentine’s Day is at best a one sided exercise. Yet marketing drives society and well look around the annual emotional ‘carpet bombing’ has begun.

Progression of Multiple Sclerosis symptoms both physical and cognitive long ago eliminated ever receiving any Valentine’s Day gift, gesture or even remembrance.  It’s such a ‘healthy couple only’ media blitz it only leaves me feeling more isolated and alone than usual. The caregiver perspective is expressed well in “Valentine's Day - Fleeting Fluff” by Terri Corcoran.

Maybe it always was illusion? As a college student I double dated with a friend on Valentine’s Day. Splurging on the memorable kind of restaurant it seemed a night and place framed for romantic love. Until my buddy decided to seize the moment to announce he was breaking up with his girlfriend.  

Also long ago in my years on the road I knew someone who falling head over heels in love with a woman drove hours with that seething passion and imagination of romantics to surprise her and ask her to “be mine” forever on Valentine’s Day. She instead surprised him, having settled down with her ‘true love’ and asked him to leave her alone before he ever opened his mouth.

Maybe romantic love isn’t an illusion but a delusion?

Valentine’s Day also is not really even a holiday. Companies, schools, and governments go about business as usual. My Mom’s body was cremated on Feb 14^th. There’s a figurative coffin nail in Valentine’s Day memories.

In all fairness there are some good memories. My Aunt and Uncle were married on Valentine’s Day. They celebrated over 60 wedding anniversaries on Valentine’s Day before death interupted the romance.

For almost two decades I’ve been involved with a Special Olympics Valentine’s dance for high school age special needs students unlikely to experience traditional school dances. no diagnosis on the dance floor

And for whatever reason snow storms and blizzards enjoy visiting around Valentine’s Day and I could not be happier. Snow is nature’s “hug me”!

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer