the separated man

As the dream floats by (‘neath the towering sky)

There’s a move to move me forward
But it only lasts ’til I fall on yesterday

With opinions thrown (like the crowd’s first stone)
And the world of men is nowhere
I have a sense of freedom but it feels so far away

‘Cause I’m in a cage (of my own making)
I never wanted to be this way
I’m in a cage (my heart is breaking)
But I’ll tough it out today

I could move way in (I could move way out)
I could move all the way to Cairo
“But someone would be there; someone that I know too well”

I wanna change my mind (wanna change my heart)
I just need some relief but I know
That it just won’t come, that is as long as I’m myself

‘Cause I’m in a cage (of my own making)
I never wanted to be this way
I’m in a cage (my heart is breaking)
But I’ll tough it out today

I’m in a cage (of my own making)
And now I forgot what the reason is
I’m in a cage (the toll’s been taking)
But I guess that’s all there is….

There’s a reason why the storm is raging
There’s a reason why you feel alone (the man’s gone to make his way alone)
There’s a reason why your soul’s been caged in
Can’t you feel your need to come back home? (the man’s gone)
Feel your need to come back home (the man’s gone)
Feel your need to come back home

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As expected, the flapdoodles have taken over….

The debate over “the flag” is custom made for the looney politicians and puffed up media blowhards. Self-righteous tongues in both camps are already flopping in spasms like so many flounders washed ashore gasping for water. It’s a jackpot topic that may possibly hold up straight through to November 2016.

But in the end, it’s nothing more than a distraction; something safe to glom onto to avoid the difficulty of the real issue.

The flag may be a symbol of segregation and racial supremacist attitudes – but if it came down tomorrow, what would change? Would all the people who have been taught the lie that non-whites are somehow inferior suddenly be inspired to a life of racial harmony if the flag were removed ? (For my money the reaction would be just the opposite – it would fuel their dangerous and faulty beliefs into a deeper anger)

The debate needs to surround how to deal with hundreds of years of racially motivated ignorance passed from generation to generation – a topic that’s always been branded as political suicide, so we know that little common sense will come from political camps, and the media has no interest in intelligent debate – to paraphrase that Jake G movie – the media wants naked women running down the street with their throat slashed. 

This one is up to us – having the guts to not tolerate racism – not on a large scale- but in small everyday things. Stop tolerating the racist jokes, stand up to racist behaviors. We decide what we want our lives to reflect – not Washington or the State Capitals, not the media in any shape or form. Us. US.

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God’s away on business…

Has to be.  Can be the only explanation for what has happened today.

Early text from friend and former workmate; a mutual friend of our’s father passed away last night.  Sad for our friend who is a good woman and has not had the easiest of roads to hoe…although she’s always managed to do it with grace and a smile.

Later on, received word that the Mrs. first roommate at Sloan Kettering has passed away.  They were together during Thanksgiving week 2014 and the roommate passed away about a week after that.  Took the wind out of our sails as she was bouncing back so well, or so we thought, from a number of different cancers.  She was a good woman and it saddened us to hear that she had succumbed so quickly.

This evening, found out that a woman we went to high school with, and I went to Junior High with, passed away today after a long, courageous battle with ALS. A gentle soul in this world – we even dated for a couple weeks in ninth grade – I think that had more to do with it being spring and she and I were voted Nicest Smile in the yearbook.  I understand they don’t do that anymore because too many parents complained.  Pity.

How was your day, dear????

Ugh

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CALS – the beginning

Fringe Observations felt like a good title as that was exactly where I was standing – on the fringe, observing every thing, one and place connected with this journey…

The original Facebook post…

“Fringe Observations – Day One. First time we’ve DRIVEN into Manhattan in ages. Got lucky – got the right weather and timing and zipped in without any traffic. Of course traffic IN the city is a different issue. Sally trying to get some sleep but they just brought in a roommate so it’s a bit hectic. I have this chair that pulls out into a lounge. Staring at the ceiling I started counting the holes in the acoustic tile, then realized there are no holes – it’s just a cross cross-pattern that looks like pinholes. Ahhh- the roommate was also at MSKBR last week – something in common to chat about. Nurses here are crazy busy – but all have a great attitude. I wonder if the roommate objects to having a strange male in the room. Time will tell. Looking forward to a sponge bath in the public restroom. The Purell concession alone is worth a fortune.”

The first day was scary, although not as scary as the three months that led up to winning an extended contract at Memorial Sloan Kettering Cancer Center in Manhattan.  Now, just so I don’t have to type that title out every single time, and I know I would have to ad nauseum, I will employ the following abbreviations:

MSKNY – Memorial Sloan Kettering Cancer Center New York

MSKBR – Memorial Sloan Kettering Cancer Center Basking Ridge NJ

TSMFDW – yeah, we’ll get to that later.

Sally and I were sitting around the house, waiting for a starting time.  Monday November 24th, 2014 – the day Dr. G told us to be ready to head for the city, assuming the hospital census dropped below 110% and there was  a bed for us. Sitting around waiting was actually the easy part.  At this point the reality of CANCER still had not sunk in – as long as we were snuggled in our house, the big C was something that was still – out there somewhere.  Denial is a beautiful thing.  It makes life very safe in the face of the uglies.

But finally the call came.  A bed was waiting.  Room 715A.  I took the call because, well at this point even working a phone had become too great a task for Sally.  She was watching TV – it must have been “story hour” because it was after lunch.

Story hour, by the way, is 1 PM to 2PM daily, EST.  That’s when life comes to a halt at the Cooper household and we (using that we a little loosely) become immersed in the lives of Nicole, Zander, Brady, Mel, Serena (oh dear God I know these people)…”Like sand through an hourglass, so are the Days of Our Lives…”

So anyway I walk into the den, the gay guys are making out on the TV – which happens EVERY time I walk into the middle of story hour without fail (i’d rather see the evil redhead in some Victoria Secret leather teddy…sorry.  Just took a short vacation).

I sit in front of Sally, taking her hand, and ask if she’s ready.  That moment was the first hole punched in the denial.  Tears sprang from her eyes.  I just held her, telling her we could do it together. It took the wind out of both our sails, so we took a few seconds to silently say goodbye to life as we knew it.

So this was day one – a beautiful sunny day which was a bonus as we ended up sitting on 66th street for awhile.  See MSKNY has a fairly cheap parking garage which everyone within a three mile radius takes advantage of, so it’s not unusual to wait in line twenty-five or thirty minutes just to get in the place.  Not completely unexpected; the MSKNY web site told us this might happen.  It’s jammed enough that we leave the car on the ramp going into the garage.  Having no idea where the friggin’ building is we walk out of the garage onto 66th and just start walking – not knowing we were walking the wrong way, naturally.  Stopping to ask a fresh-faced young man who looked medically connected in some way where the entrance was he said it was one street over.  So we continue to walk in the wrong direction up to First Avenue, a block over to 67th then right back down the hill to York Avenue.  OK.  York.  It’s somewhere on York.  We cross York because there are some really nice looking hospital buildings across the street.  Hmmm, no those are all New York Presbyterian Hospital.  Oh there it is…

We cross back over York, but not before a young gentleman of the homeless starts telling his sad tae to Sally, who I can see is ready to help in in anyway she can.  After explaining to the man that were were late for chemotherapy, and explaining to Sally that her current sob story takes precedence.

And yes, had we walked INTO the garage instead of OUT of place, we would have found the tunnel leading right where we needed to go.  It’s tough to have these rational thoughts when we are both in a fog.

In the hospital.  Admissions?  Bah.  Who needs admissions – we go straight to 715A and park our butts in the room waiting.  It’s an empty room, currently, so no one is in residence to strike up a conversation with.  Staff members walk by, giving us very odd looks, wondering who these crazy people are.

Then Kristyn walks in.  Things got better immediately.  Kristyn is a pixie with long brown hair and a sunshine smile who belongs lounging on a beach on the West Coast – at least that was my first impression.  I’ll alter that as I go – at least the West Coast part.  Kristyn was the first of a group of angels to care for Sally.  You’ll get tired of hearing me talk about them after awhile – too bad.  Kristen was the first day, Alexa was the first night – a taller version of the same attitude.

They both made sure we got settled, had what we needed and could breathe a little easier.  They knew what we were in for – we didn’t have a clue.

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Cancer, A Love Story

On November 1, 2014, we gave birth to a 2.3 centimeter bouncing baby lymphoma, nestled conveniently in the Mrs. brain.

So let me get this out of the way:

1) It was NOT glioblastoma – for which we are grateful.

2) The Mrs. is responding well to treatment – which we hope is in its final stages – more on that to come.

3) The coffee shop at Sloan Kettering in Manhattan has this wicked crumb coffee cake that comes in regular and chocolate – mother-of-god.

What follows here and in subsequent posts, are a series or rants and observations that started one night, lying in my sleeper chair staring at the ceiling unable to sleep (which happened a lot), counting holes in the acoustic tile, while the IV dripped continually and the world continually went further askew.  It occurred to me that chronicling this journey through my warped eye might serve two purposes:

1) Keep me occupied – thus not losing my mind.

2) Keep everyone else informed of what was happening.

ok three things….

3) Ensuring we maintained a sense of humor and a positive perspective.  Little did I know I would get sooooooooo much help in that area.

These observations were posted in Facebook.  I had resisted Facebook until…well, just before all this kicked in.  I can’t explain it; an epiphany pinged in my brain saying “Hey! Now would be splendid time to start that Facebook page you’ve been to militantly refusing to do for so long.” Yeah, yeah, yeah…stop nagging already.

Little did I know these posts would garner a following, the likes of which blow me and the Mrs. away.  People showing love and support, literally, appeared out of our past to delight and amaze us.  Again, we are beyond grateful.

TBC…

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The Truth

You have to surrender to your mediocrity, and just write. Because it’s hard, really hard, to write even a crappy book. But it’s better to write a book that kind of sucks rather than no book at all, as you wait around to magically become Faulkner. No one is going to write your book for you and you can’t write anybody’s book but your own.

Cheryl Strayed

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So……So you think you can tell…..

The same old fears…

Wish you were here….

fotoLI_JimmySmith Cottage_001

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