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 @ http://caregivinglyyours.blogspot.com/

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

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:

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

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

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 @ 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/

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 19^th 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

www.freetobreathe.org/harrisburg.

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 @ 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/

WEBINAR: Improving Lung Cancer Treatment With Palliative Care

IMPROVING LUNG CANCER TREATMENT WITH PALLIATIVE CARE

Webinar by National Lung Cancer Partnership featuring Jennifer Temel, MD, Massachusetts General Hospital

Well worth the watch!!!! I would also recommend a bowl of popcorn, it runs a about an hour ... 

Also rumaging around on their website I found their LUNG CANCER personalized care plan  ... a user friendly download tool for those not only fighting to outlive lung cancer but for family, friends and caregivers ... not as detailed as my three 2" binders of My Lung Cancer Odyssey but a helluva lot easier to carry around and/or share. 

--
Patrick Leer

Health Activist:

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

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

Improving Lung Cancer Treatment With Palliative Care

Watched my first ‘webinar’ last night about “palliative care” and innovations making palliative part of the ‘curative’ stage from day one … big city hospitals even have ‘palliative care’ teams available to lung cancer patients.

“Palliative care is a comprehensive approach to caring for the whole patient that considers symptom management and social, emotional and spiritual support throughout treatment.”

the word ‘psychosocial’ lit up my darkest shadows …

Thank you 
Regina Vidaver, PhD, National Lung Cancer Partnership and Jennifer Temel, MD, Massachusetts General Hospital

I’m supposed to get a link early next week to re-view the recording of this webinar … I will post in My Lung Cancer Odyssey. 

The first week of Chemo Round 3 ended with me back in for a pre-weekend saline drip. I guess its progress only one drip vs 2 or 3 per week during Chemo Rounds 1 and 2.

Does it feel like progress? I need a cane all the time now. Permanent or temporary? I’m told only time will tell. So easy for those without cancer to discuss time in the abstract.  

I am fall down on my knees grateful I have no pain. 

Kudos to modern drugs that have reduced nausea from the daily equation.  

Having no appetite I live on snacks but I’m told that is OK especially as my blood work keeps coming back OK ... and I remain within just a couple pounds of Body Mass Index (BMI) or in my case ... 175 lbs (79 kg)

A hacking cough had developed waking me throughout the night … but ‘we’ discovered it was “too many” hands in the meds prepping am and pm meds. Once on the same page cough is history and a lesson learned that not everything is about cancer.

I am not the world’s most patient person … I am trying to learn that I will need patience 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/