Sunday, November 3, 2013

Improper Update

Experimenting with hypnotherapy to grow and strengthen red blood cells. I play this CD six minutes before therapy or exercise, for example...

Praying for all of us trying to outlive lung cancer, may we all share another year with our family and friends, amen.

Tuesday, October 22, 2013

Update about updates.

Still Megan posting, but dad wanted to let you all know that small updates will be posted periodically at his facebook page until he can get to a full screen computer and post these himself.

Tuesday, October 8, 2013

An Interlude, Daughter Guest Blogging from the Hospital

Don't let the title alarm you too much. Patrick is currently in the hospital and I asked if it would be okay to post an update on his behalf.

My dad mentioned low white blood cells in his last post and wondered about an infection. Last Wednesday we got our answer when I woke up and found he was unable to get up from the chair where he'd spent the night after staying up late to watch Sons of Anarchy. After arriving by ambulance at the hospital, they determined his white blood cells were the worst they'd ever been because he'd managed to contact pneumonia.

He claims I'm patient zero, I blame the cat, and who knows who she blames.

We had a scary two days where he did not respond to antibiotics, but after a 31 hour wait, we finally moved up from the emergency room into a private neutropenic hospital room. His vitals remained steady and his blood work finally began to improve.

As it is, I've made you read too much to get to the point and my dad would grade my blogging poorly! His infection is mostly gone and being fought off. He's mostly healthy again. They did the MRI scan as requested by his doctor and found only improvement and stability when compared to the one he had done in July. Dad would've hugged the doctor who told us if he could have.

But...note my overuse of the word 'mostly'. It's been two weeks since his fifth round of chemo, and he went through a huge ordeal this past week and it's left him very physically weak. He'll be discharged to somewhere that deals with inpatient physical therapy so he can regain his strength and independence.

We haven't found out where that place will be yet, but I am sure one of the first goals he will set will be to be dexterous enough that I trust him with my laptop so he can tell everyone how he's doing on his own! And don't worry he won't be able to see your comments - I fully plan to read them out loud to him, maybe even the ones from spam bots.


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 @

Friday, August 30, 2013

Stage 4 Lung Cancer Dawn #120 Stardust the Chemo Cat

Yes I have shared some strange and unusual side effects of chemo but none quite like this … once was an anomaly, twice … let me tell you the tale of “Stardust the Chemo Cat”

“All the king's chemo and all the king's medical people … leave Patrick in a post funk after each new Round of Chemo.”

Well … except for Round 1 and Round 4.  

Laying in my recliner, Father's Day weekend after Round 1 with zero appetite … our cat Stardust jumps through her cat window bearing a squealing “chipmunk” for me …talk about a post funk erasure … hearing the ruckus Megan with the speed of professional ball player grabs the chipmunk out of Stardust’s mouth returning it outdoors 

Then last night after starting Round 4 yesterday … I was dozing off and awoke to Stardust playing with what sounded like a squeaky toy … my eyes flung open realizing Stardust does not play with squeaking toys … it was something alive 

Yelling for Megan she appears and blocks the cat window while Stardust tries to get her squeaking squirming “vole” to cooperate without having to kill it. 

Following each episode I have done my best to express my gratitude, but 'no thanks', for fresh rodent following a each new round of Chemo … 

Anyone else out there in the land of ‘trying to survive’ have a pet that cares enough to hunt and bring you food?

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Wednesday, August 28, 2013

Stage 4 Lung Cancer Dawn #120 mediport

Waking up this morning to my 120th Stage 4 Lung Cancer morning, I was back in the Hospital for an outpatient procedure … having a Xcela™ Power Injectable Port (mediport) installed by Dr. Jay Goodman, diagnostic and interventional radiology, at Holy Spirit Hospital.

Noticing fellow cancer patients wearing them in the chemo lounge I took to asking and support was universal.

Sheer number of injections over the last three months has made me realize how challenging it can be for oncology nurses … plus with Chemotherapy Round 4 beginning tomorrow there is no immediate end in sight. ... Because CT Scans and MRI's are important to my targeting and evaluation of treatment I needed the upgraded model ... and of course - thanks to CIGNA for understanding and approving

At least tomorrow after the wrapping comes off it should look more cool.

Pictured above any time there is anesthesia I wear a name tag … even though today was only ‘Twilight Anesthesia’ I want everyone on that team to know my name… should procedure go wrong … 

... nothing went wrong and soon I was enjoying a club sandwich in bed … something I have not enjoyed in years.

 Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Monday, August 26, 2013

2013 Free To Breathe 5K Harrisburg

A Stage 4 Lung Cancer with brain mets DX is the great white shark of medical diagnoses … its one single minded objective is to kill me.

Hope and awareness rumbled by my DJ/MC tent Saturday morning as nearly 500 runners and walkers participated in Pennsylvania Lung Cancer Partnership’s 2013 Free ToBreathe 5K on City Island … stretching a 3 mile living ribbon of lung cancer awareness across the Susquehanna River into Harrisburg and back … empowering!
Most important last year 7 survivors were in attendance … this year, 11 were registered though only 8 are pictured. … More, more, and more … inspirational!
Since last summer I searched for ‘survivors’ and finally this past Spring connected by an oncology nurse, while I was still Stage 1,  the woman to the far right shared she was told she had 4 months to live 4 years ago DX’d with Stage 4 … her advice to me was “take control” of your treatment … surrounding her in the chemo lounge were three more 4 yr+ survivors and a 10 yr lung cancer survivor all of whom shared similar original prognoses. 

… WE are not statistics ... WE are people fighting to outlive lung cancer
The young woman to my left was DX’d at age 19! … young women are the fastest growing subgroup … it’s an increasingly toxic world out there from radon to diesel to pollution … if you have lungs you can get lung cancer … KNOW your body

I had an opportunity to hug Dr. Troy Moritz, my thoracic surgeon who cut the primary tumor out of me in March 2012. Knowing the importance of spouse caregiving to me I was out of the hospital on the third morning and just 6 weeks later pushing my wife’s wheelchair around City Island.

Those were the Stage 1 days and my world turned upside down 4 months ago when my DX jumped to Stage 4 Lung Cancer with brain metastasis. …

10 whole brain radiation treatments and 12 weeks of aggressive chemotherapy I returned to DJ … with the help of my daughter … I danced and pranced, DJ’d and MC’d, hula hoop contests … and oh yeah Stage 4 DJing needed to sit down a couple breaks to finish smashing some stigmas. 

PS Thank You! Tom Wingert of Lucky Shot photography

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Thursday, August 22, 2013

Disability Stage 4 Lung Cancer

Sitting down with my oncologist Tuesday … we talked about latest symptoms of fatigue, fatigue and more fatigue … chemo fog ... intermittent knee pain … intermittent dizziness … intermittent shortness of breath … phlegmy cough and mucus with chemotherapy.

Chemo fog and associated mental confusion so impaired my ability to complete Patti's Long Term Care renewal ... that what should take a week of paperwork took weeks ... and almost caused me a catastrophic misfiling of her renewal.

Expressing my desire to try radiation on the remaining tumor (after all I went through 10 whole brain radiation treatments with out a problem and worked throughout the treatment) ... she explains that while radiation could attack the tumor it would do nothing about the potential spread of cancer … this is Stage 4 and metastasis is a constant threat … seen or unseen.

After 12 weeks off getting my butt kicked by aggressive chemotherapy, I share that I NEED to return to work  … except I hear the unimaginable words “you may never work a full day again” ... “you may never return to your previous level of abilities”…chemo side effects can be cumulative and each patient is different ... this is the worst time for chemo patients in her opinion ... combining side effects with quality of life ... my oncologist suggests considering applying for social security disability for me and inquire about hospice nursing at home to help take the load off Megan. 

Cold hands reach up from the chemo fog and scratch "depression" on the symptom list before dragging me down the rabbit hole …

We agree to postpone Chemo Round 4, take a brief break from chemo, digest 'quality of life' issues and talk again next week.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Tuesday, August 20, 2013

Making a Difference … One BREATH at a time

Updated: Monday, August 19 2013, 09:22 AM CDT Written by: Sherry Christian Contributor: Rachel Snody (

“Patrick Leer and Ann Parfitt, two Central PA survivors could be spending their days enjoying their families, friends and life. But they're making a difference by educating others on this often mis-labeled cancer. …”

 (click either pic or blue hyperlink to open 3 minute interview)

"...You'll also find 62-year-old Patrick Leer at the event, he's the DJ, despite battling stage 4 lung cancer himself. Along with his music, his message is never give up. He's targeting the younger generation, made up of people like his 25-year-old daughter Megan, who is also his ‘cancer coach’.

It's amazing to see Patrick walking, let alone participating in events considering the cancer spread to his brain. But he's more worried about Megan's peer group, who may not get regular exams because they think because of their age, they're immune.

But with 160,000 American's losing their battle each year, well that's just not settling well with Patrick.  "160,000 a year can't keep dying, that's, that's terrorism."

 "Free to Breathe" is this Saturday, August 24th on City Island. forecast "mostly sunny and a delightful 77˚F (25˚C)." The welcome rally starts at 9 a.m. Be sure to stop by and see Ann and I ... and so many more!!!
Patrick Leer
Health Activist:
My Lung Cancer Odyssey @
Caregivingly Yours, MS Caregiver @

Monday, August 19, 2013

OFF ROAD adventures with a cane ... Lung Cancer Stage 4

Groovin' on a Sunday afternoon with OFF ROAD adventures with a cane ... plus Lung Cancer Stage 4 with brain mets...

Patrick Leer
Health Activist:
My Lung Cancer Odyssey @

Caregivingly Yours, MS Caregiver @

Saturday, August 17, 2013

Stage 4 Lung Cancer Dawn #110

Waking up this morning to my 110th Stage 4 morning, “Loose Yourself” by Emimen echoed in my head … fighting to outlive cancer he is absolutely on target … “Success is my only motherf#&king option, failure's not”.

Radiated and/or wracked by chemo side effects I rise each day before ‘traditional’ morning to another Stage 4 Dawn … part of a ‘grateful to be alive’ army that will suffer mind numbing annual fatalities but cannot and will not fail.  

Plus … Lung Cancer Revolutions loom ... 

Remember Saturday morning cartoons??? Stop and take three minutes to watch this cartoon by Pfizer Oncology about…

How Molecular Profiling Is Changing the Fight Against Lung Cancer 

… then SHARE it with family, friends, social media … hell if you have a smart phone … stop strangers on the street and show it to them … if you have those phones you touch and share … well start touching … the absolute worse you can accomplish is possibly save some lives by giving more people a chance to outlive lung cancer.

Old school and prefer to read? Perhaps even raising a pinkie as you sip a cup of coffee ...  No problemo … “Gene breakthroughs spark a revolution in cancer treatment”

Revolutions are LONG overdue … 

Love this tweet from the Twittersphere ... 
... The answer to "Do (Did) you smoke?"
 after a #lungcancer diagnosis
..... "I Breathe." #lcsm #NoMoreBlameGame
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @

Friday, August 16, 2013

a hunk, a hunk of burning knees

Stage 4 Lung Cancer mornings though I am grateful for each and every one … can be one surprise after another.

Youch! This morning I slid out of bed onto (to paraphrase Elvis) a pair of ‘a hunk, a hunk of burning knees’.

Swallowing two ibuprofen put the fire out ... while my ‘cancer coach’ consulted the Internet and concluded it was a ‘side effect’ of Decadron. As a corticosteroid Decadron can reduce inflammation around joints.

Whatever …blessed by a personal cancer coach keeping me 'focused' and two ibuprofen a most important morning began.

Sherry Christian of CBS 21 News Harrisburg was interviewing me 
on City Island to promote lung cancer awareness and the Pennsylvania  Free To Breathe Lung Cancer 5K Run/Walk … along with two other Free To Breathe lung cancer activists later in the day.

I need to ‘shout out’ CBS 21 News, and Sherry Christian in particular …. Until our stories get out of social media and into mainstream media 160,000 people a year may keep dying of lung cancer

Breast Cancer kills 40,000 women a year yet Lung Cancer will kill 70,000 women this year ... this under funding and stigmas of lung cancer has got to stop ... thank you for reaching out from the bigger screen.

(I understand the piece should run Monday, Aug 19th on CBS 21 Morning News between 6:30 AM- 7:00 AM then again on CBS 21 evening news.)
Pennsylvania Lung Cancer Partnership
Free to Breathe® Harrisburg
4th Annual Lung Cancer 5K Run/Walk 
& 1-Mile Walk
August 24, 2013

PS … special thanks to Johanna Kilbride of Jubelirer Strategies, Philadelphia, PA for your tireless behind the scenes campaigning to promote lung cancer awareness … somewhere in all this … WE will ALL give people a fighting chance to outlive lung cancer.

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

Wednesday, August 14, 2013

BREATHE: if you have lungs you can get lung cancer

The Patriot-News is central Pennsylvania’s award-winning top daily local news source, serving Pennsylvania for 150 storied years.

Dr. Linda Rhodes, Patriot-News Columnist is a former Pennsylvania Secretary of Aging and author of The Essential Guide to Caring for Aging Parents (Penguin 2012).

I am humbled that My Lung Cancer Odyssey continues to raise awareness of lung cancer, specifically the stigmas. … 

... “If you have lungs, you can get lung cancer.”

Remember these symptoms …

Blood in cough
Recurring respiratory infections
Enduring cough that is new or different
Ache or pain in shoulder, back, or chest
Trouble breathing
Hoarseness or wheezing
Exhaustion or weakness

If any of these symptoms are troubling you see a doctor. 

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @
MultipleSclerosis.Net @

Sunday, August 11, 2013

buffalo hump, turkey gullet and now bobblehead BP

Ain’t trying to share about trying to outlive lung cancer grand?

I detour into the science of chemotherapy and blood counts and innovations like palliative care teams for a couple entries … and it’s the weird and unusual named symptoms that turn the tide.

Masked deep in Chemo Week 8, day 3 was a new phenomenon … ‘bobblehead’ blood pressure.

During my second saline drip of Round 3, I reported unusual dizziness when standing after rising, not cookie cutter dizziness but almost more feinting than dizzy … my oncology nurse using a blood pressure cuff noted a 20 point drop in systolic blood pressure (aka top BP number) and a 10 point tumble in diastolic blood pressure (aka bottom BP number)…

… both returned to normal in brief moments of stabilized standing.

When switching from (Cisplatin+Alimta) to (Carboplatin+Alimta) … my oncologist remarked we are switching side effects …Carboplatin may affect the blood more than Cisplatin.

Certainly some circumstantial evidence to that affect as it took just a couple days longer to have such deteriorating conditions through Stage 1 and Stage 2 warrant a ticket to blood plasma…
Yet after only 10 days of (Carboplatin+Alimta) with blood pressure ebbing and flowing when standing and both RBC and HGB blood counts hovering to fall over the cliff I won a blood transfusion ticket in only ... 11 days … to the freezer of chemotherapy … a double blood transfusion … wiser this time I wore my ‘Uncle Buck’ hat and jacket

To me, me not using a cane these past mornings border the miraculous but I know it’s the science cooked with my growing patience … up + stabilize = walking … kind of  catchy isn’t it.

Even better news was a call from Patti’s visiting dentist
… “no cavities, no gum issues!!!” 

Part of why I try to average visiting her facility 3 X a week is dental hygiene. Prompting her with assisting with brushing her own teeth is her final activity of daily living she can physically and mentally participate in … it takes extra work and more important extra time – not something staff can always offer Patti.

Through chemo I have to avoid her facility for my own immune system ... God Bless Patti’s staff they had stepped in even better than I could as a one person show … truth be told I teared up talking with a dentist.

So how do I share trying to outlive lung cancer?

Wednesday we had a family pizza night participating in a Pizza Hut fundraiser donating $2 per pizza sold to Free To Breathe 5k/Run.

Thursday I go in for a saline drip and with red blood counts crashing I win a ticket to double blood plasma.

Friday I’m literally “chillin” at Holy Spirit Hospital with my plasma dressed for Winter in August.

Saturday I’m getting all weepy over Patti’s dental cleaning.

Today my 88 year old Aunt called to check on me … just short of a 5 year lung cancer survivor herself … her very voice inspires!!!

Tonight my daughter and I will watch the premier of the final season of “Breaking Bad” … not only has it become an indirect creative learning tool for us but a shared and riveting ‘cancertainment’ show … cooking homemade dinner has always been a tradition … she’s the cook tonight… menu  = homemade veggie chili !!!

Most important … first and foremost I am grateful to be alive to share ... another week of ... My Lung Cancer Odyssey trying to outlive lung cancer!

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @
MultipleSclerosis.Net @