lung surgery recovery

"He who knows when he can fight and when he cannot, will be victorious.” 

Sun Tzu, ‘The Art of War’

At the theoretical half way point of recovery from lung surgery, the word itself remains somewhat alien after decades of spouse caregiving for Multiple Sclerosis.

Me feeling a little better each day is strange, almost guilty, contrasted to decades of MS caregiving where ‘progress’ is measured in slowing decline.

Though after three weeks not every lesson learned is a quandary. Foolishly trying to be ‘muy macho’ I kept the pain meds in the bottle - until the first time I coughed or accidently rolled over on my surgical side while sleeping, then I grabbed that Oxycontin like a baby grabs its bottle. … Though unlike a chronic illness, hour by hour it does get better. Yesterday, I only took two (2) ibuprofen.

For me, mainly it’s my ribs that were retracted for surgery that ache and ribs take time.

Essentially recovery is about not stressing my incisions. I have lifting restrictions. My surgeon’s anecdotes of repairing lung hernias for those who do not listen were deterrent enough for me. Not lifting more than 5 lbs - also means no pulling, no pushing, no sliding, etc of anything over 5 lbs for six weeks.

While I do not need assistance with my activities of daily living, our adult daughter has been a godsend for grocery shopping, lawn mowing, etc. even things I never foresaw such as lifting the weights weekly on our grandfather clock.

Exercising and strengthening lungs ... When I woke up after surgery I was handed my very own Voldyne 5000! Actually it’s rather fun once you get the hang of it, inhaling steadily to try and keep the bobber suspended in the “best” range.

Walking is unrestricted. I’ve currently built up walking to a mile twice daily, stretching it each day. Pre-surgery I walked two miles most days of the week.  

I must confess that in our parallel universe I have found it helpful in my healing that Patti’s outings from her care facility, now made possible by our daughter, have only fallen off about one day a week during my recovery.

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

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/

Tiger Woods vs Multiple Sclerosis Caregiver

The challenges of living with Multiple Sclerosis and the PR maxim that any publicity is good publicity are certainly getting a trial by fire this week.

Shamefully,Tiger Woods even ignores his sick relatives

     “… There is a part of me, a big part of me, that will be rooting against Tiger Woods
     In fact, there is a part of me that hopes Tiger Woods never wins another golf tournament.     He is not a good person, and I’m sorry, I simply cannot root for athletes who treat those around them like garbage…”

Tiger Woods Won't Help Half-Siblings?

     “…Tiger Woods' half-siblings say their calls for help from the golf superstar have fallen on deaf ears.     Woods' older half-sibling Kevin Woods has been battling multiple sclerosis and is now confined to a wheelchair. He needs a caretaker and is in danger of losing his San Jose home…”

We take care of our own

   "We haven't asked Tiger for a dime," says Earl Jr., who lives in Phoenix. "Not even tickets to a tournament. But Kevin's losing his home. He needs a caregiver and he can't have a caregiver and keep his home at the same time.   A spokesman for Tiger said that he's preparing for the Masters and wouldn't be returning my call to talk about it..”

While US celebrity and sports driven media feeds on the larger than life story involved in the Woods brothers dealing or not dealing with MS as an extended family, I for one wish that the families and friends of the other 400,000 Americans and 2.5 million people worldwide diagnosed with MS take the time to look in the mirror.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

empathy and caregiving

“You never really know a man until you understand things from his point of view, until you climb into his skin and walk around in it.” … Harper Lee, ‘To Kill a Mockingbird’

As I sat on the bathroom floor from my first and only fall during recovery (and with only my pride injured), I could hear echoes of my own voice asking Patti … “why are you still trying to do things you can no longer do?”

Recovering from surgery has been eye opening. Through a quarter century of caregiving for Patti’s Multiple Sclerosis and physical decline, I’ve never experienced physical compromise myself.

Yes, my pain and challenges are only temporary and in less than a month will be gone but daily I find myself feeling staggered by the seemingly endless ripples of change.

Even riding in our car or our wheelchair accessible van as a passenger is so rough on my ribs it feels more like a roller coaster. Shoulder harnesses may be safe but not ‘kind’ to ribs healing from being spread apart for lung cancer surgery. Thank goodness for faux-down vests, the next best thing to bubble wrapping yourself. J

Seeing, dealing with, and adapting to physical change from the caregiver’s perspective is incomparable to living it. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer 

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):

_____________________________________

pg 44

_____________________________________

pg 45

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer