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/

Chemo Round 2, Day 9: Wow! What a 48 hrs?

178 lbs (80.7 kg) ??  … I’ve lost 12 lbs (5.4 kg) since chemo began.

Tuesday was ‘blood work’ day and the chance to compare numbers not concepts like ‘fatigue’ … a week after Round 2 is far better than a week after Round 1 when viewed by the numbers.

Reviewing numbers with my oncologist … chemotherapy has been whuppin’ my ass for 29 days and nights …. Who would have thought ‘hearing’ would suddenly change the tide?

Megan jokingly observed the advent of my ‘geezer hearing’ noting in her opinion my intermittent loss of ability to hear the beeping of my thermometer a week or so ago.

Shortly I was noticing intermittent loss of hearing and/or ‘ringing’ in my ears.

Hearing loss apparently is a red flag side effect of CISPLATIN and not necessarily reversible. Soooo as my oncologist phrased it we are "shifting side effect risks" by switching to CARBOPLATIN for round three beginning July 23.  

Time with Patti has been a constant frustration through this past month of chemo … down from at least 3 outings/visits a week we have been lucky to have one … ‘focusing on my cancer’ the absence of caregiving time gets in my head like negative energy.

Our daughter has been a godsend somehow creating opportunity between everything else going on … we had a fun afternoon Wednesday snacking on popcorn and popsicles in front of TV and catching some sun on the back patio … all the time with ‘no lung cancer’ since Patti’s MS dementia and cognitive problems prevent her from remembering.

3 AM Thursday I was awakened by my ears popping, much like changes in altitude … except a headache remained … and frankly a scary headache more like a mild version of the brain metastasis headaches of two months ago.

Rummaging around looking for ibuprofen awoke Megan who suggested adding oxycodone I had left around from lung cancer surgery from March 2012. … next she reappeared with two DECADRON (4 mg) … she had called ‘on call’ oncologist (at 3:15 AM) who suggested adding DECADRON to the mix (it was DECADRON  that had led the first charge against brain metastasis). …. I slept totally soundly until the urge to pee awoke me about 5 hours later.

The 'protocol' was always to re-scan brain and lungs a week or two after chemotherapy was completed ... or about a month from now.

Determined to take control, not live or die by protocol, as offices opened, Megan began calling Andrews & Patel and I calling Oakwood Cancer center … long story made short I have a Brain MRI scheduled for Monday, 4 days from now instead of 4 weeks from now. 

When fighting for MY life – minutes matter. 

 --
Patrick Leer

Health Activist:

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

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

Lung Cancer you have really, really pissed me off!!!

Yes, I ‘heard’ that hair loss could be a side effect of brain radiation therapy. I even acquired a preemptive ‘fade cut’ however hair loss never happened.

Until yesterday, the proverbial ‘morning after’ 10 brain radiation treatments over 15 days.

Awakening to the gift of another Stage 4 morning and painlessly hugging my pillow good morning, I was surprised at the amount of ‘cat hair’ on my pillow.

Except it was not Stardust’s hair as I discovered walking into my bathroom, it was mine!

The day I graduated high school in 1968 I began to grow both my lifelong mustache and my hair long.

Lung Cancer I know you specifically are not responsible for trying to scalp me before you tried to kill me but you triggered the radiation therapy to get you out of my head. I hold you responsible. Plus I am feeling great after treatment, and all systems are go escalating toward DEFCOM 1 on June 11 when I start chemo against you..

Radiologists and even my friends at Salon On Main had told me IF you lose hair, it more often than not grows back, sometimes even a different color and texture. Though I am not sure that curly blond or ginger is my look.

As my wife’s Multiple Sclerosis spouse caregiver since 1989 I know how quickly time when involved in fighting any DX works against support. ‘We the people’ have the attention span and support of a Hallmark “get well” card.

Trying to steal my freak flag may have been the 24/7 kick in the butt to get busy. No longer can I hide beneath 'you look fine'. Not that I dislike the Yul Brynner or Pitbull look but I need a metamorphosis to ‘Spouse Caregiver outliving lung cancer’. I have people to entertain and money needs to be earned. The sequential order of priorities shifts as we spiral into a symbiotic relationship, a real death waltz. Outdancing death now that I like!

Thank God there are those moments when these Irish eyes are simply left smiling. A young clerk noticing my shirt and hat combo at the grocery store checkout shared it was “sooo Thoreau! Obviously you hear that different drummer.” … you have no idea. 

update Since no matter how I try to rock it, splotchy hair loss just does not look healty, so with brain mets in retreat and feeling Stage 4 on top of the world and ready to rumble with lung cancer, I  got rid of it and got myself an ice cream cone. 

Patrick Leer

Health Activist:

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

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