from caregiving to survivorship

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

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

Finally it was time to attack the cancer. Inalmost 4 hrs of surgery I behaved myself under anesthesia and surgeon performeda 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 – nopain at all! “It’s the epidural” explained my nurse.

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

On the third morning (first without epiduraland 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 waybiopsies were back – all the lymph nodes and surrounding tissue from wedgetested negative for cancer. Yabadabadoo!

3 and a half days earlier I had transferedPatti from her wheelchair to her bed and wished her good night a MS spousecaregiver (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 thatI was able to complete all my ‘activities of daily living’ by myself whilerecovering at home for the next month and should be back to full abilities then.

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

Steppinginto the void, she had picked up Patti from her care facility and had her homefor 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

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer 
(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)

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 sinceconscious sedation was involved actually became a proverbial silver lining.

Sooo Super Bowl weekend I broke the news andthe truth to our daughter. I decide to stop trying to be my Dad and be me. Meganhas 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 witha collapsed lung (pneumothorax) and hospitalized overnight with a chest tubeinserted to inflate lung. Waiting to be discharged the next day I watched the lastsnow fall of the season from my room window.

Now a ‘we’, we learned the biopsy revealed thenodule was malignant and it was off to an Oncologist and Thoracic surgeon. Theyfelt a look and biopsy of lymph nodes would improve treatment options includingmaximizing 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%' asmy heart beat plummeted and stopped beating for 5 to 10 seconds during theprocedure.

Revived and admitted to the cardiac unit overnight andafter a thorough cardio work up I was released the next day and informed that1) I DID NOT have a heart attack and 2) my heart was in excellent condition. (‘Probablyin better shape than the surgical team you freaked out’, quipped onecardiologist.) … Best medical guess – vasovagal response.

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

Unanswered – no heart beat for 10 seconds; do Iqualify 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 entrieshave 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

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

when caregivers get sick – do you glow?

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

As EOB (explanation of benefits) statements beganto appear from ever more sophisticated and expensive tests I realized cancerwas going to be expensive even with medical insurance. Our family resources hadalready 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 noticedhow many stories in newspapers recounted the collateral damage of cancer suchas a family hosting a fundraiser at a local church to try and raise $6,000 justto pay their yearly medical insurance deductibles for their son’s cancertreatment.

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

Keep in mind I physically felt great. Caregivingwas a comfortable masquerade focused on Patti. Glancing back at this blog fromthat 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 fromher care facility for dinner earlier this week. She had not seen me since ourouting the previous week before surgery. Though Patti’s parents had visited and‘broke the news’ the night before, Patti remembered nothing. In response toMegan telling her while driving she only asked "he's not dead?" andwhen I personally recapped the story again later, she focused on x-rays and radioactivescans, asking only "do you glow?" J

When questioned about me the next day, aftertwo days of memory reinforcement, she responded "I think he had lungsurgery".

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

________________

(to be continued … since its inception Caregivingly Yours entrieshave 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

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

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 ofdully sharing the statistics of risk in long term caregiving.  Yes, the stress diminishes my immune systemand increases my chances of cancer and chronic illness. Yes, my life expectancywill be shorter and my mortality rate higher. After all I have been a spouse caregiverfor over 22 years.

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

Actually I was driving with Patti when my cellphone rang. Pulling over I tried to juggle a life altering conversation whileavoiding alerting much less alarming Patti. Shamefully I was grateful forPatti’s Multiple Sclerosis short term memory loss. Caregiving never reallygives you even a moment to focus on yourself.

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

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

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

That ‘vague nodular density’ on an X-ray begatan 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, theGrim Reaper moved into my head and became my new BFF. Of course I couldn’tsleep and the Reaper and I spent the holidays and the month of January surfingthe Internet with my copies of each test and radiologist’s impressions tryingto determine how long I had to live.

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

I began living two lives.

________________

(to be continued … since its inception Caregivingly Yours entrieshave 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

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Vicki's MS Gazette Debuts

Welcome to MS Education & Awareness Month. There is a new addition to my sidebar - Vicki's MS Gazette.


There is a headline with the beginning of an article, just enough to let you decide if you want to read this particular article. If the first one doesn't excite you, scroll down. You will see other headlines over short blurbs. Like one? Click to see the full text.


Vicki's MS Gazette collects news and stories from around all edges of the available social media.Enjoy.

“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 wonderif ‘gangsta wannabees’ had taken over Patti’s care facility. Certainly none of ushad ever introduced the slang into conventional dinner conversation. Is thisthe new jargon of care facility life in 2012?

More than likely just MS Speech. Not one to write technicalentries 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 andthe more she tries the more opposite it can become

“Horton Hears A *&#!” March, 2008

... “The frontal lobes are very important inregulating our behaviour. … People … fail to inhibit their innermost thoughtsand do not modify their comments according to the situation.” Cerebral FunctionUnit, Carer’s Support Group, Salford, UK

"Hello!You little brat!" December, 2008

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

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

... Cursing and swearing is different thanlanguage, 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 differentparts of the brain can cause several types of changes in normal speechpatterns. …Long Pauses … Words are Slurred … Swallowing Problems …”

Regardlessof 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 acompliment 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’sworld, after two decades of Multiple Sclerosis sometimes eating for tastetrumps eating for health.

While dysphagia is always a clear and present danger at least thesecomfort 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, practicallyan animated musical. Of course there was a 'message' about protecting theenvironment but as with all Seuss stories the telling of the story is just sodarn entertaining and fun.

While we are blessed to own a wheelchair accessible van that empowersPatti’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 caregiversand families that depend on subsidized public accessible transportation orcontracted providers face an unknown tomorrow. Everything from access tomedical care to independence to access to family and friends could shrink.

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

Yet this is democracy and these are ‘proposed cuts’ it is time forall 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 whammyof cuts to social services and zero public transportation funding that couldmost affect the lives of those needing wheelchairs. “Able-bodied people hadunfettered access to stairs and elevators that lead to Gov. Tom Corbett’soffice 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