Wednesday, March 28, 2012

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!

Rays of Hope, is a tribute to Karen Bennett's 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
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.


(originally published in Caregivingly Yours blog March 28, 2012)

Monday, March 26, 2012

lung cancer biopsies

“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 15 to 20 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 20 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.

(originally published in Caregivingly Yours blog March 26, 2012)
Patrick Leer
Caregivingly Yours, MS Caregiver @

Technorati Tags: , ,

Sunday, March 25, 2012

sharing the news – 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.

(originally published in Caregivingly Yours blog March 25, 2012)

Saturday, March 24, 2012

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)

Patrick Leer
Caregivingly Yours, MS Caregiver @


Anonymous said...
Oh wow Patrick- I wait for the next instalment. All the best to you.
Judy at Peace Be With You said...
Oh, geez, Patrick, no. Please get well. It's ironic since on January 12, thinking of my own caregiver, I posted the following poem. I had no idea it would hit home with you. Though, as you say, the odds aren't friendly for caregivers

Who will take care of
my loved one who has MS
if I am not there?

It might not be death.
Serious illness can end
a caregiver's role.

It is a hard job.
Who will see the benefits
and take up the slack?
Cranky said...
Patrick - Screw the 350 word limit! Give us the whole story in one fell swoop. We'll forgive the lengthy post (this written by a woman often writes long posts). I'm anxious to hear what happened and your prognosis. Hope you're doing well now.
Muffie said...
OMG, Patrick -- how awful! Please give us the details and PLEASE GET WELL QUICKLY. Many prayers and good thoughts.
Patrick said...
Cranky, you almost made me laugh. Please do not do that yet, ribs ache from surgery. Smiles are great, but no laughing yet. :)
Patrick said...
Judy, what an amazing poem! I missed it when originally posted that was during my funk period and of course I was living two lives. In this journal around that date I was posting about taking Patti to the Pennsylvania Farm Show, where sheep wear spandex / an MS outing :)
That corgi :) said...
Oh wow, Patrick. I'm so sorry to hear this! I do wish you a speedy and complete recovery! And I do wish you would bend the rules a bit and write more than 350 words to get your story out of this latest "ordeal" you went through. Even though I hadn't been blogging much since the new year, I did notice your entries were few and far between. I guess now I know why. Again, best wishes for the bestest of health that you can have in the quickest time possible!

mscaregiverdonna said...
My heart and prayers go out to you. I have often worried about what to do if I needed surgery or was ill and was not available to care for Lynn. I can only imagine how hard it's been for you to live two lives during this time. Who cares for the caregiver? I hope you have others there to support and encourage you. God Bless.
Donna MScaregiverdonnna
Elise said...
Patrick-your life has been busy, to say the least. I have been reading your blogs and find you to be amazing.This news of your health could be overwhelming. I think you have shown your loved one and those around, your incredible strength. Stay strong and I know God is right there with you. Blessings-Elise
FrankandMary said...
I'm usually a BIG FAN of moderately worded posts, but this one deserved full space.
I am so very sorry.~Mary
Patrick said...
Elise, thank you!
Patrick said...
Thank you Donna! Our daughter has simply blown me away the way she has stepped up. ... and 6 some years ago when Patti and I started to look at care facilities we knew that someday something like this could happen.
Patrick said...
Thank you Betty. Speaking of bending it's not just word count but my ribs that were bent apart for access that frankly I feel the most while recovering. Time spent sitting at a keyboard kind of hurts. Briefer entries feel better. :)
Patrick said...
Thank you Muff I have every intention of recovering fully. Surgeon tells me if I behave myself I should be able to resume normal full life in a month.
Patrick said...
Thank you
Technorati Tags: ,