Monday, September 30, 2013

Round 5 Chemotherapy I've fallen and I can't get up

"I've fallen… and I can't get up!" was a catchphrase of the late 1980s and early 1990s based upon a line from a television commercial for LifeCall.

Saturday it happened to me as I tripped over a blanket and dove head first into my bedroom carpet. … What do you do? … Cell phone as well as land line was in the next room. Round 5 Chemotherapy plus whomp on the head had so weakened me I was useless.

Laying there I remember a conversation from the chemo lounge about a fellow patient who fell twice … even once having to drive herself to the ER with a bloody towel pressed against her head wound.

Fortunately Megan who had been playing with our cat in the yard arrived to the rescue … weight and strength would negate the one person unassisted transfer I have used for Patti for decades … instead Megan found a trick on Google of positioning a heavy stiff backed chair in front of me for me to pull up on while sliding my wheeled office chair under me.  …. Patti's old wheelchairs unfortunately do not have lateral movement.

Now …. if only I could successfully open bottle tops, cans and medicine bottles … it’s so annoying the little things we take for granted … even trying to plunge a commode with no upper arm strength.

This morning heading in for a saline drip I was feeling good … that was until I started up the accessibility ramp.  An onset of dizziness at first steep grade caused me to grasp the ramp bar and go down to one knee while Megan fetched the oncology cavalry! … Safely transferred to a wheel chair I continued in to the chemo lounge chairs …. 

Given a once over by oncology nurses and one of the two senior partners I was pronounced good to go for saline drip and none the worse for the wear except my cool looking rug burn mark on my head.

The trip was determined to be likely just that … I tripped. The moment of weakness / dizziness this morning was likely dehydration … which I there for anyway.

Good news red blood counts remain high!!!!! … while blood cells were curiously low … infection?  No other signs such as fever … and my vitals have not been better in months.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Tuesday, September 24, 2013

Round 5 Chemotherapy for Stage 4 Lung Cancer

Went for a sunset walk with my daughter today in 62°F (16.6°)C fall temperatures.

Yeah it was only a quarter mile contrasted to 5K over a year ago … then again my DX in August '12 was Stage 1 Lung Cancer and I was still getting NED (no evidence of active disease) scans …

Today I began "Round 5" of Chemotherapy (carboplatin + Altima) for Stage 4 Lung Cancer with brain mets.

Each round of chemotherapy is brutal and bittersweet, especially today as I tried to balance excitement over my soaring blood counts and learning that two of the 11 “survivors” I met at the Harrisburg Free to Breathe Lung Cancer 5K Run/Walk on August 24th, died over the past 4 weeks. … Stage 4 is a vulnerable existence.

I grab at little things like being handed a 60 tablet RX … or a pulse oximeter reading of 100% for lungs with a wedge out of one lung and three tumors in the other lung ... what makes us smile is likely very different than others.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Thursday, September 19, 2013

Stage 4 Lung Cancer Dawn peeing like a race horse

Today day #150 since chemotherapy began, I was supposed to begin Round 5 of chemotherapy, mo’ carboplatin + altima,  over these past two weeks … however blood counts were out of whack, anemia ruled and instead I have needed two separate blood plasma transfers ... or a total of 4 bags of blood plasma ... with even a small bag of lasix thrown in ... in the meantime it’s force liquids … 96 oz daily and just 'pee like a race horse' …

Keeping fingers crossed blood counts stabilize and chemo can return beginning of next week

... after all chemo is what is attacking cancer ... blood counts and such are a detour about me  ... Stage 4 is too short to be taking breaks!!

Patrick Leer
Health Activist:
My Lung Cancer Odyssey @
Caregivingly Yours, MS Caregiver @

Thursday, September 12, 2013

Stage 4 Lung Cancer Pratfalls

I was sooo excited Monday morning that the admission clerk at plasma facility used my middle name I dropped down on my knees like Wayne and Garth chanting, “I’m not worthy! … oh sheet! … I can’t get back up!" … with me stuck kneeling at the counter my daughter and staff dissolve into laughter as I begin my 130th day of chemotherapy (carboplatin + alitma).

Considering I was in for a plasma transfer for anemia the absolute weakest physical moment would be immediately prior to plasma drip … what possessed me to kneel down? … I just cannot resist showboating. 

Also it was first plasma transfer with new injection port … it’s kind of cool though certainly funky as I could not shower that area for a week … at least for me use of the port made the blood plasma less icy. 

Later ‘feeling’ super charged after two bags of plasma I drove to a local convenience store for soda and to practice some independence. Proudly cradling my 2 liter Pepsi while keeping my balance …(I had left my cane in the car and was using display cases for balance) … that is until I went to hand the Pepsi to the clerk…

Like a football field fumble chaos breaks loose …. Bottle spins on counter … spilling carbonation accelerating spin … bottle slides bottom first to floor shooting back a geyser of carbonation … I kneel down to pick up the bottle … WAIT! Did I just do this again?  

… Two young clerks are staring at this all in disbelief as I am down on the floor sheepishly holding up a still dripping 2 liter Pepsi trying to explain that I cannot get up … actually one was about to burst holding back her laughter  while the other shifted her urgency when I played the “c” word and blamed chemotherapy … 

… any way they get me up … as I retell the story at home I find my daughter laughing hysterically for the second time this day  and complaining that why when out with her I don’t do more stupidly entertaining antics. 

… trying to outlive Stage 4 Lung Cancer involves everything from exhaustion to fear to depression to joy and yes sometimes even comic relief ... 

Two weeks ago I DJ’d/MC’d 4th Annual Free To Breathe Lung Cancer 5K RUN/WALK … 3.5 months since DX of Stage 4 Lung Cancer with brain mets … receiving this thank you card was humbling …  
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Mesothelioma Awareness Day ...Sept 26

"... Hi Patrick,
I'm not sure if you remember, but I contacted you a while back about your blog. I wanted to reach back out to you and let you know about a campaign that my wife and I have put together with the help of the Mesothelioma Cancer Alliance.  
September 26 is Mesothelioma Awareness Day, and we are trying to get 7200 voices talking and sharing about this rare cancer, to represent the 7200 hours that the average mesothelioma patient has to live. 
As my wife is a rare survivor of mesothelioma, this day obviously means a lot to us. We aren’t asking for time, money, or donations of any kind, just voices to spread the word about this awful, and sadly little known cancer.  I was hoping that you would help support our cause by posting a link to our campaign page, so that your readers can use their voices as well! 
Here is the link, please let me know what you think when you get a chance to take a look.  Your help would mean the world to us! ..."
blog ... "Dying To Be Heard"
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Monday, September 9, 2013

Stage 4 Lung cancer depression and the whipping post

from Facebook … Jackie  to Patrick Leer

"haven't seen anything by you in a few days... hope all is well as possible. Hang in there and keep the faith!! Hi to Megan and tell her to take a few minutes and breathe.... "

Patrick to Jackie ... Round 4 of Chemo (carboplatin + almita) is worse since Chemo began in June ... remember an old Almman Brothers song 'Tied To A Whipping Post"? ... 

"Sometimes I Feel ... Sometimes I Feel ... Like I've Been Tied To The Whipping Post ... Good Lord I Feel Like 'I'm Dying'…”

... minus the long hair, guitars and about 40+ years that about captures this week ... with blood counts crashing … I found myself anemic as the week ended and ‘qualified’ for my third blood plasma transfusion since chemo began, three months ago.. 

… anemic + chemo fatigue + chemo fog is not only a constant risk of physically falling but also episodes of falling asleep sitting at a table trying to eat … the danger in falling is what I may hit so I find myself as anemia worsens positioning myself more to prevent falls than function.

Loss of wheelchair van and my failing ability to transfer Patti created the first week in months where I could not visit with Patti … … truth be told as readers may have noticed chemo fog was so bad I have not even been able to post … 

OK! … No Mas! No Mas! …. accepting that ‘quality of life’ is increasingly as challenging daily as trying to outlive lung cancer … I added mental health to my team this week … adding a psychiatrist and an anti-depressant (Lexapro) to my meds.

It has been one helluva roller coast week … sooo looking forward (at the risk of sounding like a vampire) for some blood plasma today.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Monday, September 2, 2013

Faith and Amulet Therapy Stage 4 Lung Cancer

Stage 4 Lung Cancer with brain mets never gets less terrifying especially as I try to put it to bed each night. … Sleepless nights are rewarded by a Stage 4 dawn. 

Coffee takes unsuccessful whacks at the chemo fog and fatigue before I realize … “Thank God” …I am alive and grateful for another day.

Beyond science lays faith … ‘God’, ‘prayers’ and ‘every conceivable well wish abounds on Facebook. … 

Devotional religious paraphernalia derive their power, not from the symbolism created by the object, rather by the faith of the believer in entrusting its power to God.

My amulet inventory stretches 71 years back to my Dad’s WWII metal jacketed prayer book …
Gifts of prayers and healing masses are shared in three ‘Perpetual Memberships' to Marianist Spiritual Alliance, Trinity Missions Mass Society, and Sisters of the Cenacle

… and most important of all … “Pat, just in case you need a little inspiration here's a pic of Tommy. Notice the empty seat. .. he's saving that for you! Stay strong Warrior!”
The young man pictured is my cousin … born prematurely with infantile myotonic dystrophy … he’s also at age 7 a 5 yr survivor of liver cancer … while I whine about cisplatin and almita kicking my butt … Tommy took them on and won that fight at age 2

Special children are the face of God … their inspiration is transcendent …. and Tommy ... I will share that swing with you sooner than later … right now I have to finish  crying for  your inspiration and hit send … thank you, little Cuz!!

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Sunday, September 1, 2013

Tysabri in the chemo lounge

Alive with real life stories … chemo lounges are more educational than any professional.

We decided to use this 121st day of chemotherapy to try and include Patti …

Wracked by guilt over not being able to be as involved as normal with Patti since my cancer DX … maybe just maybe if Megan brought her by at the end of my treatment session Patti may retain something about my treatment?

Arriving I discovered a corner of the chemo lounge not only talking about Multiple Sclerosis but receiving TYSABRI through IV drip bags!!!!!  .. Apparently once a month they gather for their Tysabri … I was slackjawed to learn … and more important to receive their understanding of what I was facing … where has this group been??? … of course, in a chemo lounge … where else?

Who knows what Patti retains but she was engaged and chatty  … visually impaired … IV poles and bags of colored liquid likely seemed more festive than medical.

We closed out the adventure with dinner at of Helena's Chocolate Cafe & Creperie … and of course some laughter to end this day.
Bottom line I am alive!!!  …18 months since original DX of Stage 1 Lung Cancer and now 4 months since DX of Stage 4 Lung Cancer with brain mets … I am beginning Round 4 of chemotherapy. 

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @