Sunday, June 30, 2013

post chemo morning #17

On the 17th day post chemo I awoke feeling so cold … I needed  my ‘Uncle Buck Hat’

… worst was that after 17 days of avoiding vomiting, constipation or diarrhea that door certainly swung the wrong way … I discovered that my bottle of Ondansetron ODT works as promoted … placing one tablet on tongue instantly aborted nausea.

This is not the fight for my life I expected. … Tuesday the bell rings to start Round 2 of 3.
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Saturday, June 29, 2013

blood transfusion ... chemotherapy

On the 16th dawn of Chemo … I headed off to Holy Spirit Hospital for a blood transfusion …

Blood transfusion? What am I Keith Richards?

Having lost too many friends and co-workers during the 70’ and 80’s die to AIDS … I watched in fascination at the checks and balances of modern transfusions kicked in.

Two (2) bags I’m told should produce some positive result in 24 – 48 hrs  …until then … mo' hot towels
Patrick Leer
Caregivingly Yours, MS Caregiver @

Wednesday, June 26, 2013

chemotherapy ... fatigue ... pedicures for guys

I awoke to my 15th morning of declining fatigue since chemotherapy began on June 24.

Somewhere somehow I missed the whole fatigue lesson, though more likely I chose to ignore it since I was in and out of lung cancer surgery in 3 mornings, and breezed through brain radiation treatment.

Most mornings Megan is kind enough to take me back for a saline drip or sugar water …

I am more than freaking out that my next round begins in 6 days followed by my third on July 23 … before the big scanxiety to find out if anything happened.

Comfort food has crept back into my tastes and even diet, graham crackers with either peanut butter or nutella. Last night I ate a cream cheese & grape jam sandwich and tonight a Taylor’s pork roll with Gulden’s sandwich.

In fighting for my life I never would have guessed I would need help trimming my own toe nails … tomorrow I begin this mortifying search.

Of course who am I to whine … Patti’s father died this past weekend and well death trumps.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Thursday, June 20, 2013

post chemo day # 9

Awoke to hic-quakes today 0530, shaking my body and my bed … very Exorcist. With the cool mist vaporizer running full throttle the chemo mist was confusing me.

I have not slept through the night since chemotherapy began 9 days ago, factor in chemo fatigue … and chemotherapy is kicking my ass. I pray it is also kicking cancer’s ass as relentlessly.

It’s also about my own stupidity. Where did I ever get it into my head that by the third day I would be feeling better? I had even briefly agreed to perform on the 4th day before cancelling out by day 2.

My oncologist assures me I am not unusual … some patients are up and about within the week, others may take another week or two.

After a quarter century of spouse caregiving, ‘dependency’ was never my future view … and it is spinning my world off its axis.

I must assume that cruising through brain radiation therapy addled my brain. Retuning for saline drips and/or sugar water drips has been helpful and restorative if only for a couple hours.

Plus the chemo lounge is a world within a world or a dream within a dream. Our own daughter even remarked how seeing another adult daughter watching over her  Dad made her feel less alone ... it took her 16 years to find another like her, with a Mom in a wheelchair with MS

Skipped today just to see how it might go. Started out OK but as usual without a saline and or sugar water drip it deteriorated. Returning tomorrow, Friday, for a booster for the weekend.

Plus I've developed a garden variety laryngitis which is only frustrating everything. 

Blood work, vital signs, etc. are “excellent”

Tuesday, June 18, 2013

musings from post chemo dawn week #2

“Up periscope” … 

Tossing and turning through the sleepless fatigued weekend only complicated everything as my father died on Father’ Day weekend, 1997 from Pancreatic Cancer. 
James E Leer with sons Thomas and Patrick , circa mid 1950's
Struggling through the long night as memories intertwined with the present I believe I finally understood his decision after only one chemo treatment to say “no mas” and move on.

Down almost 20 lbs and fatigued beyond describable, I tried a couple attempts to reach my oncologist office. Fortunately Megan stepped in as advocate to arrange for a saline drip as we had witnessed other revive this way.

During and for an hour afterwards I felt actually good but this too faded under the relentless chemo fatigue. Saline and sugar water drips have dominated this week.

On the other hand no pain no nausea … is a godsend. No appetite is a growing concern … nutrition shakes, smoothies, and milk shakes are my new diet.

Intermittent “Hicquakes” may be the most irritating side effect. A hic-quake begins like your garden variety hiccup but quickly multiplies shaking my whole body. Nothing in radiation therapy nor chemotherapy references them, so maybe side effect of Decadron?

Today is first time I had the stamina to even sit at my desk top PC since Friday.

Even better was meeting with oncologist and learning such fatigue is not exceptional and will pass. All my blood work and vitals are A-OK

“down periscope ...”
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Sunday, June 16, 2013

musings from post chemo dawn day 5

Does this chemo fatigue ever relent? Each morning since chemo drip has been worst.

Breezing through brain radiation seemed a good omen. Even first 24 to 48 hours of chemo were manageable until Friday when the walls came tumbling down.

On the other hand no pain no nausea … is a godsend. No appetite is a growing concern … nutrition shakes, smoothies, and milk shakes are my new diet. Weight loss approximately 10 lbs 'not good' ... but tomorrow is Monday and options increase when office reopens.

Ankle swelling non-existent today.

Intermittent “Hicquakes” may be the most irritating side effect. A hic-quake begins like your garden variety hiccup but quickly multiplies shaking my whole body. Nothing in radiation therapy nor chemotherapy references them, so maybe side effect of Decadron?

Today is first time I had the stamina to even sit at my desk top PC since Friday. 

Thank God our adult daughter is home. Buying a humidifier and setting it up in room may be the best Father’s Day gift , ever!    

post chemo clock = 118 hrs and ticking ... 

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Friday, June 14, 2013

musings from post chemo dawn day 3

Coughing awake at 0459 I check my temperature and discovering it 97.1˚F (36.2˚C), my mind wonders … where are my four calling birds?

Forgive me this is Chemo not Christmas and I’m still reeling from the third day … Fatigue, fatigue, and more fatigue … burnout, debility, exhaustion, weakness, weariness, and even dog-weary.

‘Slo-mow Patrick’ struggled to even get up out of chairs. Forcing liquids becomes almost a conundrum because the more I drink the more I need to pee. Standing and peeing the result of 64 oz Gatorade Blue, it was impossible not to reflect on how more fatiguing this would be for women. 

In a chemo variation of stop and smell the flowers … how often do you see a “Mr. Frosty” ice cream truck fueling?

To be sure I charged into chemo following 10 brain radiation treatments and yes I should be ‘dog weary’ but who fights for their life half-assed?

Between hospitalizations, surgeries and such it seemed medical types were obsessed with swelling around my ankles, which was never a factor … until of course the day of fatigue when my ankles resembled boots and only complicated motion. Oncology nurse suggested light walking and best of all elevate feet.

Sooooo to improve my odds of sleeping I turned to the art of nesting, by sleeping in a lazy boy style chair elevating my feet and bringing back out a Christmas decoration to watch over me.

Weight loss? Yes, no, maybe. I’m at 180 lb (81.6 kg) which IMHO uniquely qualifies me to enjoy my Good Humor Chocolate Éclair Bar with my morning coffee especially as chemo fatigue appears significantly less on this 3rd morning since chemo.

post chemo clock = 60 hrs and ticking ...
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Thursday, June 13, 2013

musings from post chemo dawn day 2

Awoke coughing at 0255, no blood, 96.6˚F (35.8˚C) body temp. 

Fatigue, fatigue, and mo’ fatigue dominates the post chemo hours. ‘Slo-mow Patrick’ is not a comfortable skin for me.

Trying to fall back to sleep cancer sows seeds of doubt in this new garden of fatigue.  

Roused again 0628 by coughing, no blood, 97.0˚F (36.1˚C) body temp. (I use both Fahrenheit and Celsius because increasing medical people use Celsius, somewhat like learning a second language in this war to live.)

Yesterday I learned, to my relief, that post chemo coughing can be triggered by a variety of external and internal reasons. The operative word is blood and no bloody cough. … Nor have I forgotten in the fatigue coupled with sleeplessness the post chemo absence of nausea or vomiting. I am grateful.

Best idiosyncratic moment was buying a new refrigerator from Best Buy and delivered yesterday. To hell with outliving cancer I’m starting by outliving this refrigerator.  

Another quirky moment occurred toward end of yesterday’s 7 hour chemo drip. My fingers and hands though never immersed in water appeared waterlogged by the end of the day, as if they had been at the beach.
Noticing the bruises of war can be freaky but this will not be a pretty fight. Personally I kind of like the “z” shaped bruise from blood draws and with a little Googling discovered that the “Z” may have its origin in the Semitic symbol named zayin which possibly meant "weapon".

Speaking of weapons it’s time to start forcing liquids. Armed with my 32 oz Holy Spirit Hospital jug I knocked down Gatorade G2 lemon lime yesterday only to discover I should be knocking down 2 to 3 jugs and no reason to go with their low calorie version. So today it’s a Gatorade ‘blue’ day.

Frozen Virgin piña coladas whipped up in our blender can oh so hit the spot and the best fatigue buster weapon is always available a cat nap with or without Stardust our cat.

post chemo clock = 40 hrs and counting ...

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Wednesday, June 12, 2013

musings from post chemo dawn

What a short strange trip it has been. One month short of a year and a half as a Stage 1 Lung Cancer survivor, my staging skyrocketed to Stage 4 with brain metastasis.

Following 10 brain radiation treatments for the metastasis it was time to go after the cancer.

Appetizers for my first ever chemotherapy drip were of saline solutions plus a B-12 shot.

Next my oncology nurse blended in ALOXI (palonosetron hydrochloride) is an antiemetic and anti-nauseant agent with EMEND which when added to other anti-nausea meds can reduce chemotherapy induced nausea and vomiting (CINV) for up to 5 days. … So far 10 hrs after the claim, it holds true,  though I am always within reach of my ZOFRAN ODT, 8 mg, “dissolve tablet on tongue”.

ALMITA I did not feel, but CISPLATIN ‘rocked’. I discovered there are times an air guitar just won’t do … you have to get up and rock the chemo pole wearing Capt. America leisure pants. (Especially when Guns and Roses are singing “Sweet Child of Mine” and Megan arrives with lunch!)

Accompanied by my IV pole I went exploring the building and  was surprised to find, Patti’s Mom and Dad waiting on a cousin. Enjoyable ‘surprise’ visit with them.

Wandering and with the Irish gift of gab, I met several fascinating people, couples, and families fighting to live. … The answer my friends, is in the stories of people not the prognosis.

Two more chemo drips scheduled over the summer, every three weeks ... then re-scan brain and lungs and see what is going on or not going on.

Some new ‘slow-motion Patrick’ took over once unhooked from chemo at the end of my 7 hr drip. To paraphrase Dr. Seuss, “I’m not sure I like slow-motion Patrick I say” However from talking with other’s in my chemo lounge the chemo fatigue is finite, it will end ... however a couple more mornings of sleeping through the night would be a treat.

I return today for a quick visit today to get a shot of NEULASTA (pegfilgrastim) designed to reduce my chances of infection by boosting white cell counts … and since I have every intention of staying alive, and around people, NEULASTA sounds like a friend of mine. … plus it came with a complimentary thermometer. … current body temp = 98.6 °F (37 °C) 

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Tuesday, June 11, 2013

enter chemotherapy Stage 4 lung cancer

Today after a two week break from brain radiation treatment for brain metastasis, I begin chemo for the lung cancer in my right lung with my first chemo drip from 1000 to 1600, firing two guns, Cisplatin + Alimata plus oodles of other stuff including more steroids and meds to prevent nausea at Andrews & Patel Associates in Camp Hill, PA
In my man bag I have a RX for Omdansetron ODT/ Zofran ODT 8 mg with instructions to “dissolve 1 tablet on the tongue every 8 hours as needed for nausea”

32 years ago I crawled to drink from the fountain of youth in St. Augustine, FL

16 years ago my Dad dying of Pancreatic Cancer agreed to one dose of chemo then 'no mass'.

Just 4 months ago on a quest to find other’s like me (then a Stage 1 survivor) instead I found four four year survivors and a 10 year survivor of Stage 4 lung cancer …and in their chemo lounge fell to my knees and in my best impression of Wayne & Garth from Wayne’s World when they meet Alice Cooper and began my “I am not worthy” routine. 

I am learning that the weapons of my war on lung cancer are drugs and beyond …

Indulge me a  brief side story about Cisplatin as it connects me to my young cousin, the most inspirational soul I know. Premature birth, infantile Myotonic Dystrophy, and a liver cancer DX ... the child was and is a warrior! Now 7 yrs old, he is also a 5 year liver cancer survivor! Twice this year he was hospitalized for TBI and recovered.  In my darkest moments I close my eyes and connect with his blazing eyes of the tiger.

All along right in front of me was my greatest secret

weapon my daughter. Back in February 2011 preparing for my CT Guided Biopsy, our daughter handed me her copy of “Art of War” by Sun Tzu. Curious choice I thought at the time. Hospitalized overnight as the biopsy triggered a pneumothorax, the book helped me to refocus that lung cancer was no DX but a war to live. 

Patti's niece forwarded me a link: Active Ingredient In Marijuana Kills Brain Cancer Cells

How do our children get so damn caring and wise?

“All things are ready, if our mind be so.”
― William Shakespeare, Henry V

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Sunday, June 9, 2013

death rattle to maracas

Hoping to enjoy my first night’s sleep following 'cut back instructions' for Dexamethasone / Decadron, a corticosteroid, that had led the charge against brain metastasis … it was not to be …

Instead I was awoken by the most horrific breathing I had ever heard and it was coming from me. Drifting into the bathroom and seeing blood on my face. … major ‘freak out’ time

Sounding like Darth Vadar, I then made it to Google where up popped “A death rattle is the sound produced by someone who is near death when saliva accumulates in the throat.”

Rational thought began to kick in, “step away from the Internet”, and I called my oncology office at 0500. Answering service would contact ‘on call’ oncologist who luck of the draw would be my own.

Returning my call seemingly in minutes, she quickly pointed out that I was sounding better as we spoke, and her suggestion was to immediately take the phased out half tab of Decadron.  If I was not feeling and sounding better in 45 minutes get to Holy Spirit Hospital.

Dawn ER staff at Holy Spirit Hospital were a godsend as they poked, probed, listened and x-rayed … all the while staying in communication with my oncologist who in turn would call me … I never had fever nor pain nor shortness of breath.

Bottom line my lungs sounded ‘surprisingly clear’ to ER Doctor considering I have lung cancer and x-ray revealed that nothing more was there than before … “Clinical Impressions” upper respiratory infection, epistaxis (nose bleed) … abort phase out of Decadron and continue twice daily at 2 mg.

Most important to me … chemo remains all systems go for Tuesday and ... remember with a compromised immune system I'm somewhat a bug trap. 

After maybe the best nap of my life it was time to get ready … the show must go on. Forever I have been entertaining a Capitol Hill Block Party.

Beginning this Stage 4 morning in an ER and discharged was a different twist. … Yet in my lung cancer odyssey it was an empowering twist … I’d say even a stigma shattering twist.

“Work it, make it, do it,
Makes us harder, better, faster, stronger!”

Stronger by Kanye West

... and empowered / assisted by our daughter who has been surreal facing my lung cancer odyssey plus her Mom's care facility level of MS. How many young adults could possibly face such a combo?
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Thursday, June 6, 2013

Ain’t no morning like a lung cancer Stage 4 morning

Stepping outside to a 49°F (9.4°F) dawn in June, coffee steams up from my "Lucy the world's largest elephant" cup (it's a Jersey Shore thing) as I watch a guy trying keep his dog from barking at every critter that runs or flys through the breaking fog. ... cinnamon swirl toast spread with peanut butter, can a morning be better?

“Pressure pushing down on me
Pressing down on you …”

Each and every morning since being told my lung cancer staging had rocketed form Stage 1 to Stage 4 with brain metastasis has been a Stage 4 morning and believe me there ain’t no morning like a stage 4 morning.

“Turned away from it all like a blind man
Sat on a fence but it don't work…”
I do not do yard sales, yet Saturday out of the blue I did. My storage facility was sponsoring a unit yard sale. Set up a table or sell from unit. It was fun and I bought for only $2 the tackiest homemade beer stein ever.

“Insanity laughs under pressure we're cracking
Can't we give ourselves one more chance?...”

Tuesday  I deejayed a party sponsored by Prince George’s County Associaton of Realtors for Fair Housing Poster Contest winners and their families in Lanham, MD

“Tomorrow gets me higher, higher, higher...
Pressure on people - people on streets”

Wedneday I deejayed a Fundraising Reward Party at Pine Grove MS, Baltimore, MD … PLUS this middle school was recognized as the Baltimore County Public School’s LARGEST CONTRIBUTOR to the Children’s Cancer Foundation with close to $17,000.00 going to provide assistance to children with complex medical conditions!

“Cause love's such an old-fashioned word
And love dares you to care for
The people on the edge of the night …”

Shouldn’t I be fatigued after brain radiation therapy? What’s with the stigmas? Is all anyone ever knows about Stage 4 a buzzkill?

Yes I lived 17 months in Stage 1 lung cancer and no one ever asked me if I was tired. Sooo why the stigmas of Stage 4?

My intention is not to thump my chest but stigmas are really starting to piss me off. Each of us diagnosed with Stage 4 Lung Cancer brings our entire lives to the 'Battle of Stage 4', there is nothing anyone can quickly change.

I am blessed with no other health issues. A quarter century of juggling Multiple Sclerosis caregiving, parenting and deejaying was and is physical caregiving and has left me unencumbered by any of the sedentary life style related health issues of most 60+ males.

Maybe it’s the touch of radiation but I feel great!

... even a bit surreal as I bemusedly smile at the phrase “life expectancy” in terms of major home appliances. Thank you Queen and David Bowie for the phrase “insanity laughs” … you have no idea how empowering buying a refrigerator with a life expectancy of 11 years will be today.

“And love dares you to change our way of
Caring about ourselves
UNDER PRESSURE by Queen and David Bowie

... fingers snapping, I'm off.
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @