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 @ http://lung-cancer-survivor.blogspot.com/
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

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 @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

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:

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Making a Difference … One BREATH at a time

Updated: Monday, August 19 2013, 09:22 AM CDT Written by: Sherry Christian Contributor: Rachel Snody (RSnody@SBGTV.com)

“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. …”

“…Making a Difference …One BREATH at a time…”

 (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 @ http://lung-cancer-survivor.blogspot.com/

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

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 @ http://lung-cancer-survivor.blogspot.com/

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

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:

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

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.”

NON-SMOKERS ARE NOT IMMUNE TO LUNG CANCER

Remember these symptoms …

          BREATHE

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:

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

MultipleSclerosis.Net @ http://multiplesclerosis.net/

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 @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

MultipleSclerosis.Net @ http://multiplesclerosis.net/

My Lung Cancer Odyssey ... newsworthy?

From “The Sentinel” Newspaper …
15 hours ago  •  By Christen Croley, The Sentinel

“MECHANICSBURG — For the past 24 years of his life, Patrick Leer’s own health concerns were of little consequence in the face of his wife’s multiple sclerosis …“

MECHANICSBURG MAN FIGHTS STAGE IV LUNG CANCER, CARES FOR WIFE WITH MS

Thank you Christen Croley and “The Sentinel” for promoting awareness of lung cancer and upcoming Pennsylvania Lung Cancer Partnership’s Free To Breathe 5K Run/Walk on City Island on August 24th.

--
Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Two out of three ain’t bad

Meeting with my oncologist to discuss yesterday’s CT Scan of neck, chest, abdomen and pelvis … 

In ‘lay speak’ … after 6 weeks of chemotherapy two of the three tumors in right lung have shrunk and one has not grown … 

… hugging and or hi-fiving anyone and everyone … it was time to pick up Patti for her annual mammogram … ‘family assistance’ was requested because Patti can be a most uncooperative patient, last year even slapping the tech ending the unsuccessful session.

Not much different this year except no one got hit …. Patti simply reinvented boundaries of cursing, swearing and yelling even with her own daughter trying to help before another mammogram bit the dust … 

A little time with the ducks, Papa John’s Pizza and Misto Shakes from Rita’s was next on the list  …

Picture collage captures me “preparing” in waiting lounge for my meeting over lung cancer scan and our post unsuccessful mammogram picnic in the park.

“We я Scans” 

--

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

MRI BRAIN FINAL REPORT = MARKED IMPROVEMENT

I am humbled by the sudden surge in views, readers, tweets, retweets and social media I do not even understand of interest in My Lung Cancer Odyssey.

I pray it’s not some ‘waiting for the train wreck syndrome’ since my DX soared to Stage 4 with brain metastasis.

When my daughter and I first met with Stephen Milito, MD of the Oakwood Cancer Center  on May 13^th,  he was the first cancer person when asked to offer a timetable  … “unchanged” 6 months to 18 months to live … asking him if he ever wins he smiled and said he could not do this if he did not.

‘Changed’ by 10 whole brain radiation treatments he met with us smiling and saying I’ll see your back in 4 months … reading the radiologist report was even more encouraging.

I’m going to deviate from my normal style here because I know enough readers are facing my situation and I will simply post the diagnostic radiologist report (personal information redacted)

 Both I and my daughter could only smile at the first line “prior gamma knife treatment”

 … there was NO gamma knife however the precision targeting of whole brain radiation on my mask was so effective it fooled a radiologist … the rest reads only better

I pray for others it will provide hope when facing Stage 4 Lung Cancer with brain metastasis … it is not “end stage” lung cancer – that stigma has got to go.

 “…the gods will offer you chances.

know them.

take them.

you can’t beat death but

you can beat death in life…"

THE LAUGHING HEART by Charles Bukowski

-- 

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Oh Happy Day!

Not since our daughter was born have I known such joy as this morning.

Springing up I hugged my radiation oncologist Stephen Milito, MD and Medical Director of Oakwood Cancer Center ... maybe a half dozen times (in a manly way of course) … fighting back emotions. 

Whole Brain Radiation was effective, MRI looked good … next checkup in four months.  … yeah there is still some metastatic gunk in there but benign and may or may not need cyber knife or gamma knife. 

I was struggling big time not to lose it emotionally while trying to control a breaking voice talking and riding with Megan who shared every moment of this drama … It wasn’t until I called Patti’s Mom to let her know ... that she fell apart taking me down the happy tear trail with her.

It’s difficult to explain because lung cancer is bad enough but metastasis to the brain was my personal horror show … and will always be. 

Except now I’ve got Stephen Milito, MD checking on my brain every four months while Margarita Gareis, MD with Andrews & Patel Associates is on the lungs with chemotherapy. … her next CT Scan is in about four weeks to evaluate how chemo is doing with right lung. 

Nothing is cured and never will be ... but with the right team ‘lung cancer’ can hopefully become a treatable chronic illness.

Simply hearing my next appointment is in four months is somewhat life affirming ... 

“I'm a shooting star leaping through the skies

Like a tiger defying the laws of gravity …

I'm gonna go go go

There's no stopping me …”

Freddie Mercury

--
Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Scanxiety, Scangst, Fool’s Gold

“… Here comes the fear again

While I´m waiting for the scan

Trying to stay as calm as I can

Though I felt the pain again

In my chest and in my brain

I am sure it is growing again …”

Scanxiety (Waiting for the scan)

The Wide Plains

Only 3 months ago when my DX was Stage 1 Lung Cancer I thought ‘scanxiety’ was bad. But now Stage 4 with brain mets, scanxiety has evolved to full blown scangst and its scary. 

Only the cruel irony of lung cancer could schedule Monday’s  critical, life defining Brain MRI three days from the first anniversary of my first follow up scan after successful lung cancer surgery to remove a 8mm nodule from left upper lobe. Scan = NED (no evidence of disease) in medspeak … or in retrospect it was the ambiguity  of medical Fool's Gold.

Unfortunately the Maginot Line protocol of lung cancer kept everyone staring into lung junk every 4 months, while cancer metastasized to my brain. …

10 whole brain radiation treatments over 15 days in May successfully relieved the headaches and pain of brain metastasis clearing the way for 3 rounds of chemo over 9 weeks. …. Unfortunately headaches ‘unexpectedly returned’ and I get my first dance with Stage 4 scangst during Brain MRI on Monday … and it’s freaking me out.

Following Friday’s saline drip, my 'personal nurse navigator' suggested a distraction, “Pacific Rim”. Arriving a bit early we had time to play in the theater’s arcade, where Megan whupped me without mercy … no playing the cancer card with her.... and as a fan of Sons of Anarchy I was pleased to see Charlie Hunnman (Jax) playing the lead in a Hollywood flic along with Ron Perlman (Clay) playing a villain. 

I found the break was helping me to untangle myself from my own personal tentacles of scanxiety / scangst. Tomorrow is not in my hands but today is.

Even found myself whistling “Always Look on the Bright Side of Life” … 

-- 
Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Chemotherapy Round 2, Day 7 Hornet Party

Fighting for my life I am learning is about a growing dependency on others.

For a quarter century I have been my wife, Patti’s caregiver as her Multiple Sclerosis progressed through over 15 years of homecare and once in the care facility era I continued to be involved 3 – 4 nights a week with outings, dinner and above all always transferring her from her wheelchair to her bed.  … It is what I believed was right and share in Caregivingly Yours.

Since chemotherapy began and chemo fatigue and chemo fog tears me down day by day … I cannot risk visiting a care facility with my weakened immune system … I feel as much a failure as fatigued.

Housekeeping from lawn mowing to house cleaning are losing to fatigue … even received a ‘friendly reminder’ from homeowner’s association about my driveway pole lamp not working. …. I’m sorry but if I genuinely had a ‘friendly’ home owners association wouldn’t’ they fix it instead of sending a ‘friendly reminder’ … I can’t even begin to count the number of times I have mowed lawns, shoveled sidewalks for injured or recovering neighbors.

Then again I read through the blogs in my sidebar and realize how many are blessed with healthy and working spouses and companions. … Being able to ‘focus’ on my own cancer and treatment is unimaginable in My Lung Cancer Odyssey.

Thank God we each have a story to tell or else we would be statistics.

I am not without my own blessing, our adult daughter who has been transcendent since my cancer staging upgraded from Stage 1 to Stage 4, just 11 weeks ago in early May … but she cannot do everything … though she has been masterful when confronted with Patti’s Dad’s death, from informing her through keeping her Mom involved in his visitation and funeral … I cannot even imagine what that was like to navigate through her Mom’s dementia? ... plus look at me some days and not start researching palliative care.

Megan's first attempt at changing lights was rebuffed by a hornet party in the pole … 

… big mistake hornets … I may be  chemo fatigued but with a spray can of hornet whup-ass now there is a "friendly" pole full of "friendly" dead hornets which I found the stamina to change myself with a smile.

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Round 2, Day 4 … saline drip

Nausea and diarrhea is a helluva start to a day, throw in chemo fatigue and I am left wondering why am I doing this?

Wiser in Round 2, fortunately we had arranged a saline drip for 1100, Day 4. … During Round 1, never even knew such an option existed until Day 7.

Saline drips are all about restoring body fluids and electrolytes.

To me however any and all time in the chemo lounge is time with people like me. Chemotherapy is so much more than the fatigue and discomfort of symptoms … it is about fear and hope … and only in a chemo lounge can I find fellow travelers on the edge of life.

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Round 2, Day 2 … Neulasta Shot

Maybe it’s too early to compare and contrast Round 2 with Round 1 … Fatigue continues to dominate … my world feels like it has been turned upside down and no energy to put it back together. ...

Reducing risk of infection is paramount during ‘strong chemotherapy’.  

Yeah of course I can avoid people and I have masks … plus the second day each round I get a shot of Neulesta to help boost my natural defenses.

 ‘Stronger chemotherapy’ caught my attention especially when I learned that Cisplatin was a derivative of Mustard Gas. … we are talking more than chemo here, we’re talking chemical warfare!

... (showing my age here) ... there are moments I feel like Slim Pickens riding the bomb down at the end of Dr. Strangelove.

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

More CISPLATIN … more ALMITA …

Yesterday, July 2, began Chemotherapy Round 2. … preceded by 10 whole brain radiation treatments … and, of course, three weeks since Chemotherapy Round 1 of ‘double down’ dosage of CISPLATIN and ALMITA.

Yeah, we talked about options like ‘reducing strength’ of dosage or even taking a ‘break’ of a week. Bottom line is that any break we give to me we give to cancer.

I learned that white blood cells can be boosted during chemo to help in the fight. Red blood cells on the other hand ‘can’ be boosted but at risk of also benefiting the bad guy, cancer … sooo instead blood transfusion was used … and my ‘numbers’ to begin Round 2 definitely benefit me. 

Does Round 2 ‘feel’ any different? … well, the smell of Megan cooking vegetarian chili from scratch won and I’m actually eating a bowl … it took over two weeks before I tried solid food during Round 1.

Also yes … I grow increasingly grateful for your prayers, kind thoughts, and caring thoughts as I share My Lung Cancer Odyssey.

"God bless us, every one"

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/