Tysabri in the chemo lounge

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

We decided to use this 121^st 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 @ http://caregivinglyyours.blogspot.com/

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

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/