Surrounded By Palm Trees

I was going through some old writings and I found this poem and journal entry from one month after moving to the Florida Keys, so this would have been written in December 1997.  It's funny to try and put myself back to that girl, newly arrived on an island with the whole world waiting outside her door.  In some ways it seems like just yesterday, and in others like an eternity ago.  I have truly come to take it for granted that the sun shines most of the time, I see palm trees if I look out my window and the ocean if I leave my house.

Palm trees.  I am now surrounded by palm trees.  Every way I look, I can see palm trees.  The wind in the palm trees sounds like rain.  I love that. 

Mangrove trees are cool too.  Like the palms, they co-exist with the ocean and the elements, tough yet flexible, clinging to life and to the land against all odds.  Mangroves not only dig their roots into the land, but help to create the very land that gives them life.  In the movie Key Largo, Lauren Bacall compared herself and people who made their homes in the Keys to Mangroves, digging their roots in and becoming a necessary part of the land. 

I really love the Keys.  I am still in awe of the fact that my home is on this tiny strip of land surrounded by ocean on all sides, joined to the mainland by one road that is nothing more than bridges between islands.  Nearly 100 miles from mainland Florida, about 100 from mainland Cuba.  It’s like living on the edge of the world.  Frightening, exhilarating, and yet just life, we live day to day and work, love, laugh and play and in only one month have come to take it for granted in small ways.  This is where I live.  And I love where I live!

Song of the Sea

I hear the cry of the wind, hear the song of the sea. 

I feel that hot tropic sun shining down on me. 

Give me the wind in my hair, give me love, set me free. 

Give me peace in the shade of a swaying palm tree.

I've wanted to do this for years

I’m going to do it this time

I’m learning to hold back the tears

and I’m leaving old ghosts and fears.

I've finally made the decision

I’m sticking to it this time

my senses and intuition

are honed to a fine precision

There's a yearning inside me

that can only be eased 

by sunshine and sea

I can't deny, it’s meant to be

My soul needs the shade 

of a swaying palm tree

I hear the cry of the wind, hear the song of the sea. 

I feel that hot tropic sun shining down on me. 

Give me the wind in my hair, give me love, set me free. 

Give me peace in the shade of a swaying palm tree.

I Had A Dream

I think I had a dream or a vision

Or maybe I saw it on the television

They were rioting in the streets again

When will the poor people learn they’ll never win

The police shot another unarmed black kid

One side is full of contrition

One side stands by its convictions

It’s only when the fights begin

The people start to understand

They have no voice and they never did

It seems I’m having that same dream again

I watched as the fighting and crying began

Some marched in the streets chanting hands up don’t shoot

Some yelled and encouraged to burn and to loot

The police shot another unarmed black kid

One side demands justice for all

One side stands above the law

Until they’re made to pay for their sin

And look past the color of their skin

People will rise, the light of peace will be hid

I heard a great man say I have a dream

He tried to tell the people what it means

Tried to teach and preach the path of peace

Ushered in equality and sweet release

Then the police shot another unarmed black kid

_____________

Thankful Heart Happy Heart

Thanksgiving was very interesting this year.  Several weeks before, I had been trying to decide whether or not to cook Thanksgiving dinner.  I wanted to go back to Chattanooga, but we just weren't ready to travel again after being gone so long and home so little this year.  We often spend the holiday with some good friends here in the Keys, but hadn't yet made plans, so we were up in the air.  Then, Scott received an email from Al.

The very first phone call Scott made to Massachusetts General Hospital back in April was answered by the admitting RN, Al Ferreira, at the MGH Center for Chordoma Care.  Al was our contact at the hospital for pretty much everything.  He navigated the red tape, scheduled the appointments, coordinated the whole team of doctors/nurses/radiologists, answered our questions, assuaged our fears, and fought the insurance company for pre-approvals and pain med authorizations.  He was a friendly face during morning rounds in the hospital after surgery; he took Scott’s stitches out, and he was a friend to just shoot the shit about Dr. Who when that’s what Scott needed.  Just a few weeks ago, he was kind enough to take time from his busy day to get on the phone with me and the insurance company fighting another charge they were trying to deny.  He was the first person Scott spoke to at the hospital and the last person we said goodbye to.  The entire staff at MGH was amazing, but Al made it all work.

So, the email said that he and his wife were going to be waking up in Key West on Thanksgiving Day, leaving at 10:00 a.m. and driving to Fort Lauderdale.  He wanted a recommendation for somewhere to get a turkey dinner about 2 hours up the road from Key West.  Of course, we suggested that since our house is almost exactly 2 hours from KW they should join us for Thanksgiving dinner, and they accepted.  I was happy to cook and we were tickled to get to host them in our home.

I have written about Scott’s battle with Chordoma, and there is a lot more about it on his Caring Bridge page.  

http://www.caringbridge.org/visit/scottyoungberg/journal

Basically, it is very rare bone cancer.  Very rare.  They call themselves one in a million.  There are only about 300 cases in the U.S. per year.  About half of those are treated at MGH, which is why Scott was there and also why we actually know quite a few chordoma patients from all over the world even though there are so few of them.  But, the one that totally blows the statistics is the other sacral chordoma warrior right here in the Florida Keys.  Out of roughly 80,000 people in our little chain of islands, there are 2 in a million.  How ‘bout them odds?

And it gets stranger.  The guy lives right here in the upper Keys.  And we have, like, a ton of friends in common.  We had never met Jeffrey and his lovely wife Shevaun before this all started, but I guess life or fate or karma or something has a way of bringing people together.  As soon as friends in the Keys started to hear Scott’s story this past spring, the first thing many of them said was, “That sounds like the exact thing Jeffery has.”  Before we knew it, mutual friends put them in touch, Scott called Jeffrey and a friendship began.  Jeffrey was also treated at MGH, had the exact same team of doctors, and basically the same procedures except unfortunately, his was significantly worse.  His chordoma was one of the largest they had treated at MGH.  His battle has been even longer and harder than Scott’s, with a few more after effects, but he is also finished and cancer free! 

Of course, Jeffrey and Shevaun knew Al, so we also invited them to join us for Thanksgiving dinner and they accepted as well.  It was quite a day of giving thanks!  Just being in the company of both Scott and Jeffrey for their first holiday since kicking cancer’s ass was such an incredibly positive and uplifting feeling. But when you added Al into the mix, one of the people directly involved in saving both of their lives, it was kind of magical.  I know Jeffrey and Shevaun both felt it, I hope Al and his sweet wife Ginger did as well.  We all tried to thank Al and tell him how much he meant to all of us throughout the whole process, but he shrugged it off.  I just hope he got a feel for how much he means to the patients he helps. 

I don’t think anyone can go through something like cancer treatment and not be changed by the experience.  Just being the caregiver of someone in treatment has changed me.  Life seems a little more precious.  I feel like I've been given a gift of seeing more clearly the people who truly love and support me and to more easily forgive and let go of those who don’t.  Sometimes it’s been surprising to learn who is in which column.  The generosity of people has humbled me.  I will be forever a more charitable person as a result of this experience.  Every day is a gift and I will try and greet each as such.

 

I am so proud of Scott for how strong he has been and how he fought and won his battle.  It was a hard year.  Cancer treatment is weird medicine…making people sicker to make them well.  The treatments were tough and I know there were days when Scott wanted to quit, but he kept going.  So did Jeffrey, so did little Madi in California, so do all of the Chordoma and all the cancer warriors every single day.  If they can wake up with a smile and a thankful heart, we should all strive to do the same.

It was a real pleasure to have such an amazing group at my Thanksgiving table this year.  As Jeffrey often says, “Peace, love and light” to you all.

Our good buddy Wood was invited to join us as well but wasn't able to make it.  He did, however, do his usual rogue decorating…

__________________

Where In The World Is My Mama?

Mom is not getting better.  If anything she is getting worse, according to Daddy.  Since being put under anesthesia for surgery on her wrist over a month ago, she has not been the same.  The theory seems to be that sometimes elderly people have trouble coming back from being put under, especially if there was any dementia at all prior to.  And she did have signs of slight dementia starting.  She imagined bugs and got some crazy notions in her head, but nothing serious.  I mean, she’s always been a little bit crazy, but I had noticed some slight slipping over the last year or two.  But, it’s like my brother Ken said, “On a scale from 1 to 10 of dementia, she went from a 1 or 2 to an 8 or 9 overnight.”  It is very frustrating because it’s now been 6 weeks since the surgery and she shows no signs of improvement. 

It seems like she cannot differentiate between her dreams and reality.  And she apparently has some doozy dreams…

She gets fixated on things and will not be convinced they are not true.  It’s almost like she’s in a waking dream…or series of recurring dreams.  One of the recurring ones is that the nursing home is shutting down and they are kicking her out.  One day Daddy arrived at her room and she kept talking about all the furniture out in the hall.  She said they were gutting all the furniture from all the rooms because the place was shutting down the next morning.  Of course Daddy tries to humor her by going back out into the hall and looking around.  He tells her there is no furniture out there, but she argues with him about it.  Then she tells him the nurses told her the power was being turned off later that day because the place didn't pay their electric bill.  She insists they are “putting her to the street in the morning.”  I know how badly she wants to go home, and I’m sure this is just her mind working out a way for that to happen.  In her mind, if the facility kicks her out, she’ll have to (get to) go home.

The nurses and staff bring all of her meals and drinks and manage her medications for her now.  For years she has been very meticulous about her pills; organizing them in her pill boxes and keeping charts of when she took what.  Now she is often convinced that the nurses are getting them all mixed up and giving her the wrong meds.  On those days she refuses to swallow the pills; one day she even spit a pill back out into the water glass.  Other times she is positive that they are trying to poison her and she won’t eat.

Another of her recurring fantasies involves money.  I’m sure her subconscious mind still holds onto all the worrying she did about their financial situation before the house was sold and most of the bills were paid off last spring.  She gets upset at Daddy, telling him that it’s his fault, he messed up something and now they owe thousands of dollars and everyone is mad at them and they are going to be homeless.  He tries to explain to her that they are ok and the bills are being paid, but she argues and won’t believe him.

The kind of comical one is the imaginary party going on at the hotel across the street.  She claims there is a hotel across the road from the nursing home, and people are always having big loud parties.  Apparently, they come and get her from her room in the middle of the night and make her go to the party even though she tells them she doesn't want to go.  We think she imagines the hallway outside her room is the “road” and when she hears people talking or laughing in the hall, she imagines they are having a party.

 

She constantly sees people who aren't there.  She thinks people spend the night in her room.  One day there was a cat that got into everything and ended up hurt but nobody would help it and it was running around crying.  Her ongoing bug/insect hallucination has just gotten worse.  The bugs from the house in the valley that had followed them to the mobile home have now followed her to the nursing home and the place is infected.  The other day she asked Daddy if he saw those firemen come through the wall.  She said there was a smoke in her room and a hair dryer caught on fire so the firemen came through the wall and took care of it…no, they didn't tear down the wall, they just came through it.  It would be almost funny if it wasn't so disturbing.

 

The one that hurts is that she imagines I am there a lot, sometimes there in her room, sometimes I’m at the party, and I either ignore her or I am outright rude or mean to her.  Daddy tries to tell her that I wasn't there, and she says she knows I’m in Florida, but then she will still insist that I was there the night before and was mean to her.  When I got to visit her last month, she asked me why I wouldn't speak to her at the party the night before.  I explained to her that I had just gotten to town and wasn't even there the night before, and she said maybe she had dreamed it.  I agreed that she must have dreamed it.  I told her how much I loved her and tried to tell that the next time she thought I was there and being rude or mean, she should tell herself that she must be dreaming because Suzi wouldn't treat her like that.  But I spoke with Daddy yesterday and it seems I had spent the night with her the night before and had been “plumb ugly” to her.

I know I shouldn't take it personally.  Poor Ken had her look him right in the eye and say “I hate you” because he wouldn't take the cast off her broken wrist.  And I know Daddy puts up with it every day and is able to let it roll off.  I know it’s not really what she thinks or feels, it’s just the disease or whatever it is that has gone wrong with her wiring.  In a lucid moment she will tell me that she loves me so much and doesn't know what they would do without me.  I know that she loves me and that she is proud of me and that she realizes how much I have been there for them and how much I've done for them.  But, I can’t help but wonder what is it in her subconscious mind that defaults to making me the bad guy.

Maybe it’s because I took charge of their financial situation last year and told them straight up how things were and what they had to do.  Perhaps somewhere in her poor mind she resents or even blames me somehow for having to move.  I know she feels like we forced them into the mobile home, even though we tried to make them understand they really didn't have a lot of choices.  Again, I know that in a lucid moment she fully understands what happened and realizes that we more or less saved them from a very scary financial future.  But, if she is currently acting out her subconscious and her dreams, it seems obvious that she is still working through all of that, worrying about money and housing.  Perhaps her worried mind has somehow put me in the role of the authority figure, the parent so to speak.  That doesn't really explain why she would imagine me ignoring her…I know I’m stretching.  Maybe it’s simply because I haven’t been to visit in a while.  Perhaps she simply got used to me being there so much over the last few years and now her confused mind doesn't understand why I haven’t been around lately.

 

I know I shouldn't take it personally.  But that is easier said than done.  As of today, it seems she is having trouble remembering how many children she has.  When Daddy told her she had three, she argued and said she thought maybe she only had two.  Of course Daddy said it broke his heart to hear her ask that.  I've tried to brace him for the day he shows up and she doesn't know him.  He says he knows it might be coming.  We talked a little bit longer, and something was said again about her not remembering her kids.  I laughingly said that I didn't even want to know which one of us she didn't remember.  Daddy didn't volunteer an answer, just laughed and changed the subject.  So, hmmm … but don’t take it personally, right?

We have decided to go home for Christmas because I can’t stand the thought of Daddy alone his first holiday in the new place, and I want to see Mama.  I’m really worried that she is giving up.  Daddy said she has made several comments about it not being worth it, and how maybe her time is over and she should just give it up.  When he questions her further on the subject she waves it off, but I can tell it worries him.  And I know it has to be so frustrating to her in her more lucid moments, because she does realize that she gets confused.  And now Dad said she has stopped talking about going home.  That worries me.

Ken took this picture a few weeks ago.  She doesn't even look like the same woman I've always known.  The way she holds her mouth and the set of her eyes are completely different.  I just wish we knew what has happened.  Where in the world is my Mama and is she coming back?

I Dreamed It Snowed Like Buffalo

If you have turned on a tv, listened to a radio, read a newspaper or simply logged onto Facebook lately, you probably know that Buffalo NY suffered a record early snow fall this week.  Not just a little light early November snow, but feet and feet of snow, thunder snow even!  Of course, watching the weather channel from the comfort of my home in the fabulous warm Florida Keys, my first thought is "How do people live like that?!"

It's interesting for me watching the news footage of cars and portions of houses nearly covered in snow drifts.  To be honest it is how I always think of Buffalo, New York.  When I was a child I remember hearing about a big snow storm in Buffalo.  I think now that it must have been the blizzard of '77 which left Buffalo frozen under for days.  I just remember hearing about the cars buried in drifts, people trapped inside their homes because of snow drifts over their doors, and I was both fascinated and terrified at the same time.  I would try and imagine snow that deep but at that point I had never seen more than 2 or 3 inches of snow in my life.  The thought of snow deeper than I was tall stretched even my pretty vivid imagination.  That's when the dreams began.

It was a recurring dream theme for a while afterwards.  Usually it began with my brothers and me opening our front door to find a solid wall of snow packed against it.  We would dig a tunnel out into the yard, then start digging upward so we could get above the snow line.  Since we were just children, and in my dreams the snow was a good 12 feet deep, we had to make a ladder of our bodies and would send Mark up to pop through the top since he was the smallest.  Once Mark confirmed that he could get through the top crust, we would make stair steps in the vertical tunnel so we could all climb up and have a look around.  Of course Ken designed the tunnels and figured out how to get rid of the extra snow with a special process he came up with (the engineer even then!)  Yes, I had very vivid dreams as a child.  I can still remember the feel of the cold smooth snow tunnel, the cold air in my face when I stuck my head out the top; and the look of the world, all still and white and undisturbed, dotted with nothing but roofs and treetops poking through.  We would try to crawl out onto the top surface and see how long it took to start sinking.  My dream snow was very hard packed.

I swear I dreamed it so often that it almost feels like a memory instead.  As a teenager I met some girls who had lived in South Dakota for a winter as children.  They told stories of a snow stack in their yard that stayed all winter long, and how they had tunnels dug all through it and played in it all season.  It was funny how their stories brought back "memories" of my dream adventures.  And now, after all these years, hearing that Buffalo is snowed under brings to mind my dreams of snow tunnels.

Word Dancing

About a year and a half ago, I wrote a song called "Word Dancing."  I posted the lyrics on here back in June 2013 as "My New Song."  Since I don't play an instrument, the music that accompanies my words can be heard only inside my own head.  Earlier this year, my brother Mark and I were discussing song writing and I had mentioned having a couple of fully written songs in my head that needed to come out.  He volunteered to take a stab at writing the music for me.  So, several months ago, I sent him the lyrics for "Word Dancing" along with 2 recordings of me singing it a capella (bless his heart!) and here is what he did with it.  I am so tickled with his interpretation.

So, give a listen to our first sibling collaboration song.  

Is There A Doctor On The Plane?

It was like a scene from a movie.  We’ve all seen it.  Someone is sick in a public place and you hear “Is there a doctor in the house?”  Happens all the time on tv, in movies.

I was flying home from Boston the other day, on the last leg, after lunch and a couple of beers during the Baltimore layover.  Quietly dozing in my window seat, I startled when a flight attendant came over the speaker asking, “Is there anyone on the plane with medical training?...a doctor or a nurse?... please come to the rear of the plane.”  Several people got up and hurriedly walked to the back.  I was seated mid-plane.  I turned my head to look, but from the window seat I couldn’t see anything except for the flight attendants walking back and forth, looking worried.  One of them finally came back on the speaker and announced that there was a sick passenger in the rear lavatory and asked that no one go back there.  We were instructed to use the front lavatory only. 

Looking around at my fellow flyers, I was relieved and a little surprised that folks were so calm.  With the media inundating us with Ebola fear, I wouldn’t have been surprised to see more panic on the faces around me.  Luckily, most everyone looked to be taking it in stride.  They looked curious but not scared.   I wondered if we would have to land early, depending on just how sick the person was.  But other than a lot of hubbub in the rear of the plane, nothing more happened and we continued on our way.

Later, when the flight attendant announced that we were approaching Ft. Lauderdale and would be landing soon, she said that there was a very sick passenger on board.  She asked that everyone stay seated once we landed so the sick person could get off the plane quickly.  Upon landing, once again everyone was asked to stay seated for a moment and they actually did!  An older couple walked quickly from the rear to the front and exited the plane; the lady was wearing a mask.  As soon as they were off, everyone jumped up and the normal circus began.  Not another word was said about it.  

___________

Things I've Learned

Always try to be friendly
Don’t lose your temper in public
Never get too comfortable
Don’t lie because you will get caught

Everybody cries
Everybody makes mistakes
Everybody lies
Everybody gambles the stakes

I've learned how to cry myself to sleep
I've learned some secrets you should keep
I know I sleep hotter on my right side
I know how to smile when I’m dead inside
I've learned to lose and not keep score
I've learned to love the sound of your snore

Make the most of the here and now
Don’t waste time on worry
Remember this life is all that you get
Don’t expect more than someone’s got to give

Everybody cries
Everybody makes mistakes
Everybody lies
Everybody gambles the stakes

I've learned you catch more love with honey
I've learned you need more love than money
I know there’s no cap on your quotient of sorrow
I know that the sun will still come out tomorrow
I've learned not to wrestle with regrets
I've learned that this may be as good as it gets

Everybody cries
Everybody makes mistakes
Everybody lies
Everybody gambles the stakes

Everybody tries
Everybody strives for their own sakes
Everybody dies
Everybody ends doing what it takes

_________

Missing The Feline Familiar

I didn't write this, but I really like it.  Missing  my SugarBear.  If all goes well, he will be home in less than 6 weeks.

The Cat’s Song

by Marge Piercy

Mine, says the cat, putting out his paw of darkness.

My lover, my friend, my slave, my toy, says

the cat making on your chest his gesture of drawing

milk from his mother’s forgotten breasts.

Let us walk in the woods, says the cat.

I’ll teach you to read the tabloid of scents,

to fade into shadow, wait like a trap, to hunt.

Now I lay this plump warm mouse on your mat.

You feed me, I try to feed you, we are friends,

says the cat, although I am more equal than you.

Can you leap twenty times the height of your body?

Can you run up and down trees? Jump between roofs?

Let us rub our bodies together and talk of touch.

My emotions are pure as salt crystals and as hard.

My lusts glow like my eyes. I sing to you in the mornings

walking round and round your bed and into your face.

Come I will teach you to dance as naturally

as falling asleep and waking and stretching long, long.

I speak greed with my paws and fear with my whiskers.

Envy lashes my tail. Love speaks me entire, a word

of fur. I will teach you to be still as an egg

and to slip like the ghost of wind through the grass.

_____________

Showing My Age

Spending so much time in the hospital recently has made me aware of my age in relation to the majority of the working professionals.  The staff at the hospital was all SO young.  I expected the nurses to be young, but I swear some of them look like teenagers to me.  Even the doctors were young. From the dashing young intern to the oncologist, all were much younger than I would have expected.  Even the surgeon, a renowned and published surgeon, director of several departments, professor at Harvard Medical School, and on the Who's Who list of surgeons for not only Boston but for the entire U.S., is one year younger than I am.

Now, don't get me wrong.  I'm not so old yet that I don't trust those young whipper snappers to know what they're doing.  I am impressed and amazed by the whole operation of Massachusetts General Hospital.  There are a lot of great minds working there, so what if a lot of them happen to be younger than me.  But, it does hamper the use of pop cultural references and movie quotes.

One morning during rounds at the hospital, the doctor was attending to Scott's incision, etc., and it was obviously causing pain.  At one point, Scott cried out "Candy bar!"  The group snickered but I could tell they just thought it was a silly thing to say; not one of them got the reference.  I said to Scott jokingly that they were all probably too young to be familiar with "Little Shop of Horrors." Their blank faces told me I was right, and we didn't bother trying to explain Bill Murray's masochistic character...

"I definitely need a long, slow root canal" 

...or even attempt to describe Steve Martin's brilliant portrayal of the crazy, sadistic dentist.  

"You'll be a dentist, 

you have a talent for causing things pain.  

Son be a dentist, 

people will pay you to be inhumane."

"Oh that hurts, wait I'm not numb."

"Open wide, here I come!"

A few days later, not to give too much information, but Scott was having the normal difficulty getting things "moving" after surgery.  The doctors had told him he couldn't be released from the hospital until there was movement. His very young and cute little nurse, Meghan, offered a laxative. She assured him it would be mild, to which Scott replied, "Well if I'm going to take one, give me one that's sure to do the job.  Like Gallagher said, 'rough me up!'"  Meghan smiled an indulgent nurse smile, but again, it was obvious she didn't get the pop culture reference; she had no idea who Gallagher was.  I laughed and once again said as much, and she confirmed she had never heard of him.  This time, we decided not to just let it go.  So, we started trying to explain Gallagher to her. Of course, we thought she would have heard of the sledge-o-matic.  Nothing.  

"The handiest and dandiest kitchen tool you've ever seen...and don't ya wanna know how it works?  The tool that is not a slicer, not a dicer, not a chopper in a hopper. What in the hell can it possibly be?  It's Sledge-O-Matic!"

We described it in detail, "So, he would take a sledge hammer and smash watermelons with it, and it would spray all over the crowd!  And the people in the front row would wear plastic because they knew they were going to get covered in pulverized fruit!"  Etc., etc.  We were laughing just talking about it.  But Meghan looked at us in all perfect seriousness and said just one word.  "Why?" Absolute silence in the room.  Why indeed.

Later when Scott was trying to get out of bed and walk around for the first time, we didn't even try to explain to the sweet young nurse on duty why we laughed when he told himself "Wiggle your big toe."  Didn't even mention that we had watched both Kill Bill movies the night before his surgery or clue her in that it was the reason for the catchy little tunes we were both constantly whistling or humming.  (For me, it was Elle Driver whistling "Twisted Nerve" as she walked through the hospital resplendent in her nurse uniform and matching white eye patch with the little red cross on it.  Classy creepiness.  For Scott it was Bill's haunting pan flute rendition of Zamfir's "The Lonely Shephard."  I think I need to get the movie soundtrack.  Who can resist singing along with the 5,6,7,8's..."who who, who who who. who who, who who who..."  Tarantino always has the perfect quirky music.)

"You didn't think it was gonna to be that easy, did you?"

"You know, for a second there, yeah, I kinda did."

"Silly rabbit."

"Trix...are...for kids." 

My favorite quote from the Kill Bill movies, but apparently the younger generation doesn't get that one either.  I saw a Quentin Tarantino forum recently where someone wrote:  Just wondering what the phrase "Trix are for kids" refers to. Is it perhaps from a past QT movie or is this only explained in Vol.2?

Of course, it's a play on words of the name Beatrix, but what got me on the forum was how many were clueless that it was an old cereal ad.  I really didn't even know it wasn't still a current ad. Do they even make Trix anymore?

So, for at least the remainder of the hospital stay, we just kept our pop culture references and jokes between ourselves, and felt superior to and a little sorry for the poor younger generation because they just don't know what they missed.

_________

Drowning My Sorrow Blues

With every glass of wine that I drink

These thoughts of you are all I think

With every shot of whiskey that I sip

Can’t help but dream of your sweet lips

And if I’m crying in my beer

It’s just because you’re not here

I’m just trying to ease the pain

Of missing you again

Every day I’m more confused

Feeling worried, scared and used

Wish you would call me on the phone

So I wouldn’t feel so all alone

Wearing my feelings up close to my skin

What used to be tough is wearing thin

Killing a bottle in an alcohol haze

Helps numb the pain of better days

I’ll lay here and wallow

Drowning my sorrow

Rum really makes me mellow

And Vodka makes me very slow

Wine used to make me sleepy

Now it seems to make me weepy

Brandy made me lazy

Then Tequila made me crazy

Gin just makes me want to fight

While Sambuca made me see the light

With Absinthe I think I can fly

But Bourbon...Bourbon makes me cry

I’ll lay here and wallow

Drowning my sorrow

So raise a glass to promises spoken

Swallow the poison of promises broken

For better or worse our choice is made

Some vows once taken can’t be unsaid

But I got a bottle to drown my sorrow

I’ll crawl inside at least 'til tomorrow

Might come out, might just stay

And drink my way to a better day

With every glass of wine that I drink

These thoughts of you are all I think

With every shot of whiskey that I sip

Can’t help but dream of your sweet lips

And if I’m crying in my beer

It’s just because you’re not here

I’m just trying to ease the pain

Of missing you again

__________

The Scent Of You

Your scent lingers on my mind

Perfume in the cavities of my brain

Defying limitations of space and time

Teasing me like a children’s game

I smell your skin and feel your breath

Every moment of every day

Years, distance, not even death

Will change the way I feel today

I remember your lips

Imagine myself in your embrace

Dream of the taste of your kiss

And long for the sight of your face

From your forehead all the way to your feet

The many hours and the kisses spent

How can someone smell so sweet

Skin usually doesn’t have that scent

The smell of you lives in my memory

Your taste, your voice, your laugh familiar

Clouding my perception of all that is sensory

Nerve endings tingling to be where you are

_________

Reflections In The Rear-view

I love to drive. Always have. Even before I could drive, I loved to ride.  I always wanted to go somewhere. My Daddy used to say that my middle name was Go.  When I was in my late teens/early twenties, I would take off and drive around on Lookout Mountain just to pass the time.  When I was 26, 1993, my career as a road warrior began.   From that year on, I have averaged about 30,000 miles a year.  I spent four years pretty much constantly on the road in Tennessee, Georgia and Alabama.  For the last 17 years I have come to know the state of Florida like an old friend.  

Saw a t-shirt on a guy in a bar recently that read, "If life is a book, those who don't travel only read one page."  Over the last month I had the opportunity to read a lot of pages.  The circumstances of the trip are unfortunate, but always one to try and make the best of things, find the silver linings and all that, driving from Key Largo FL to Boston Mass was quite an experience.  I saw the most beautiful scenery; majestic mountains, valleys that belonged in paintings, picturesque towns, and I even got to make a side trip to the rugged coastline of north-eastern Massachusetts.  In all it was almost 23 days from the morning I locked up my house and got in my Pilot with husband and cat, loaded up with a couple months worth of provisions, to the night I unlocked that same door, all alone, and unloaded my measly 2 suitcases, and the guitar.  The Taylor was my traveling companion to avoid shipping trauma later on.

3,893.5 miles, and 12 states, in 23 days.  The first 2,000 miles or so were with company and shared driving, and broken up in a week plus of travel. The last 1,700 miles were done in 3 solid days, 27 hours, of nothing but driving alone.  I tried the books on tape/disc years ago, but it's just not me. When Scott and I drive together, we read a book aloud (lately the Odd Thomas series,) and I'm good with that.  But, when I'm alone, I prefer to listen to music and sing.  I sing for hours and hours.  I stare out a windshield and into a rear-view mirror, and I sing.

The drive up through Florida and Georgia to Chattanooga is one I could almost do in my sleep.  I swear I know every bump in the road on I-75 through Georgia.  Driving east through Tennessee was very familiar even though it had been a while.  I've spent a lot of time around Knoxville and in the Smokey's, and used to drive up I-81 and spend a lot of time working in Morristown TN, and occasionally worked up in Johnson City and Bristol Tennessee.  But, on this trip I stayed on 81 all the way to Pennsylvania.  In Scranton PA, the road turned east on I-84, across the length of PA, a portion of New York and Connecticut, where I picked up I-90, the Mass Pike all the way to Boston.  When I left Boston to head home, I will admit that I was a great big bak bak chicken and didn't take the suggested quickest route straight down I-95 because it would have taken me right through the heart of NYC, Philly, and DC.  It wasn't really the size of the cities or the traffic or worry about my safety or any of that really, just simple laziness.  I didn't want to have to worry about navigation that much.  If backed in a corner, I would admit that with all the worry and the dislocation, I don't feel my sharpest.  And, I am not in a position to take any chances with my own self...can't afford for something to happen to me.  I'm needed.  So, I took the easy interstate only way, back across PA on 84, down through VA on 81, then cut over to Richmond on 64 and picked up 95 which took me most of the way home.  Only added about 2 hours to the overall trip... 25 vs 27 hours, really, what difference does it make?

Virginia is the most beautiful state I have been in.  And, believe me, I'm pretty partial to Georgia and Tennessee.  But VA was breathtaking.  I wasn't in West VA or Maryland long, but what I saw was nice, I kept thinking that the people who live there have that incredible mountainscape in the distance every time they walk out their front door.  I know it's like that when people imagine what it must be like for me to see the ocean every time I walk out my door.  It's always been a toss up for me.  I miss the mountains so much, but I think I would miss the ocean more.

Pennsylvania was quite lovely itself.  But, I have to say, PA has the worst roads.  Period.  There was one section east of Scranton when I thought the front end might fall off my car, it was shaking so much from the rough pavement.  And I saw more dead deer per square mile than I have seen in my life.  I was pretty paranoid.  I know how those Pennsylvania deer stake out innocent travelers and strike when least expected.

Another interesting observation made in traveling the width of the country was the courtesy or lack thereof in different geographic latitudes.  Several years ago, we drove to Chicago.  I remember a moment on the road when I was amazed that when presented with a sign announcing the left lane was closed in 2 miles, every single motorist immediately got over into the right lane.  Not one car sped up through the left and forced their way in at the last minute.  I remember that I just didn't know what to think about that.  

Over the last month, I really hadn't given too much thought to the traffic, but on deeper reflection, I realized I hadn't really cussed at other drivers in a while.  (All of this narrative excludes Boston.  Boston traffic is a phenomenon unto itself and by far, bar none, the worst drivers, worst traffic I have ever seen.)  But other than Boston, I have found northern drivers to be courteous, rule abiding and refreshing.  All that shit about southern hospitality, it clearly doesn't apply to the road.  It wasn't until somewhere in North Carolina that I found myself cursing another driver, and it actually surprised me because it had been so long since I had been pissed on the road.  It got steadily worse the further south I drove.  But, I am here to testify, loudly and with no coercion or prejudice, that Florida drivers are the rudest I have ever encountered.  Hands down. Period.

Next week I will need to travel to some Florida towns to visit clients, and I will be ready to drive again by then. At the end of the month, I will return to Boston, but it will be (literally) planes, trains and automobiles, and I won't be driving any of them.  Mass transit is the only way to go in Boston.  But I still love to drive and always will.  My Daddy knows me, Go is still my middle name.

Sad Girl On A Mountaintop

I watched her pull off at the interstate scenic mountain overlook somewhere in central Virginia.  She drove past the RV and the families with kids running around their cars, and chose a spot down at the end of the row of parking spaces.  I'm not sure what it was that caught my eye or made me pay so much attention to her.  Perhaps it was the impressive number of bugs adorning the front of the otherwise nice SUV.  Maybe it was the stuffed pelican on the dash or maybe the Florida tag.  She was a long way from home, and alone. But, I'm pretty sure it was her sad face that drew me in.

As she sat there in her car, releasing her seat belt and removing her sunglasses, she stared at the vista before her with the most melancholy expression.  She opened the door and stepped out, stopping for a moment to look around at her fellow overlookers.  When her face turned towards me it was obvious she had been crying.  Her eyelids were swollen and red, cheeks streaked with tear tracks.  Brown eyes large and liquid, softened by heavy sadness.  Dressed casually in denim capris, a t-shirt and keds, no jewelry, no make up, she looked to be mid- 40's'ish.  She must have noticed me, or maybe the family of 6 lined up for a group photo, staring at her, because she put her sunglasses back on and turned to close and lock her door.  She walked toward the overlook and I noticed the slightest wan smile, as if she was mildly amused by what the staring strangers must think of her, the lonely tourist.  

She stopped at the rail and began taking pictures with an iPhone.  What I could see of her face behind the sunglasses was a mix of awe and wonder at her surroundings and worry, loss and loneliness.  As she walked from one end of the overlook to the other, stopping to take pictures every few feet, she removed her sunglasses again.  Thumbing through the pictures, she seemed pleased with the results because she put the phone in her front pocket and just stared out at the beautiful valley and layers of mountain peaks in the distance for a few more minutes.  Then she turned and started walking back toward the parking spaces. Again, her eyes, still heavy with recently shed tears, swept the parking scene, alert and wary of the group of guys getting out of a van and watching her.  Again she put her sunglasses back on and walked hurriedly to her car.  I was struck by the contrast of the quiet beauty in the sad girl and the majestic awe inspiring mountain beauty all around.  

She got back in her car and I watched her lock her doors, start her engine, fasten her seat belt and fiddle with her phone or some other device for a few minutes before backing out and driving off.  My eyes followed the Florida tag until it was out of sight, heading down the other side of the mountain, and I wondered where she had been, where she was going, what sad story had hung those lines of care on her face.  I found myself wishing safe travels and a lighter load for that sad girl on the mountaintop. 

Living In Hope

Living at The AstraZeneca Hope Lodge is like nothing I have ever experienced.  It's the most interesting mix of people; all ages, colors, accents, but all with one thing in common: cancer.  And there are many types of cancer here, all types of treatments, people in many different stages and conditions, and a lot of stories. There is a lot of sadness here, but also a lot of resolve and strength, and a lot of hope.

The first person we struck a connection with was a much older guy, here as caretaker to his wife, who we never met because she never left her room.  She was on a breathing machine and a feeding tube.  They had been here a while when we met him and they left a few days after we arrived.  But, his advice to us was to talk to people, get their stories and take hope from them.  He said to find hope in every story, even the seemingly unhappy ones.  That's the hardest part for me.  When I see the pain in the eyes of the guy dealing with two different types of cancer at once, or hear the lady with half a tongue answer the question of how are you doing with "They are burning me," or hear the sweet little woman talk about beating cancer 12 years ago just to have it come back as radiation induced cancer, it is hard for me to find a lot of hope.  But, I have to remember that each one of them is here, doing what it takes to live.  They have hope in the midst of the suffering.  Right now, Scott doesn't even seem sick.  He has some pain and fatigue, but overall he appears healthy.  I think it helps him to realize how fortunate he is compared to others, but also shows him that no matter how bad things get for people, they continue to fight and hope and he can gain strength and hope from that himself.  Hope is where the heart is.

The place itself is wonderful.  Very comfortable and homey.  So far we've spent a lot of time in our suite, which is very nice and comfy, but there are a lot of areas to hang out when the walls start closing in. Morning news and coffee out in the shared living room is becoming routine.  I think my neighbors are getting used to seeing me in my jammies and fuzzy slippers getting coffee in the mornings.

Cooking meals in the shared kitchen is kind of weird, but kind of cool too. There are 4 kitchens, each one with 2 stoves, 2 microwaves, 3 sinks, lots of cabinets, 2 refrigerators and a large freezer.  Each room has an assigned shelf in the fridge and freezer, and a cabinet for food.
Eating in the large communal dining room is social time.  One night a guy played harp.  One night volunteers came in and cooked Italian food for everyone.  And Scott has even played a little guitar down there while I cooked a few evenings.

They have movie night in the theater room once a week.  There is a library with a fire place, an art room, a game room, and a lovely little garden area that will be nice when it warms up.

Today I found myself a great little quiet space while Scott naps.






I haven't had much opportunity to explore Boston yet.  It's been cold and rainy much of the week.  And the trips to and from treatment take a good chunk of the day.  I am doing my best to avoid driving and parking downtown, so we are taking various forms of transportation each day.  The Hope Lodge provides a free shuttle to treatments, so we've been taking it to the hospital each morning.  That ride is a trip!  I'm very thankful that I'm not drinking here because if I was even the slightest bit hungover in the morning I would definitely hurl all over the van.  Since right now Scott is still one of the visibly healthier people here, we usually volunteer to crawl all the way into the back seat of the van so the ride is rougher, kind of like being in the back seat on a roller-coaster.  The roads from here into town are very narrow and hilly.  We've been catching either the 8 or 9 o'clock shuttle so traffic is pretty heavy heading into downtown.  The driver, Cheresa (like Teresa but with a K) drives that bus like she is driving a little sports car.  She takes curves so tight and so fast, and forces her way into traffic, I just hold on and hope we make it.

Three of the days this week we weren't able to catch her for the return trip, so we took the train.  Riding the "T" is an interesting experience too. The first day I felt like such an idiot trying to figure it out...had to ask for help 3 times.  I'm sure I'll be a pro before this is all over.



We found out this week that after his surgery in August, Scott will have to come back for another round of radiation in September.  We are very hopeful that he/we will be able to get back in here at that time.  This is THE place to be, living in HOPE.

The Murder Of The Dolls

Tonight I'm going to share a funny story.  Well, morbidly funny.  In fact, it's kind of a horrific story, but I bet you laugh.

Several months ago, my parents sold the house they had lived in for 40 years.  My brothers, sisters-in-law and I did all the packing and moving, and in the process, we came across some treasures from childhood. Among the loot, there was Ken's 4-H trophy, Mark's Star Wars figures and Commodore 64, and my dolls. Years ago I had asked Daddy to get my dolls out of the attic so they wouldn't melt and ruin.  I'm not sure what I thought I was saving them for.  I knew they weren't collector items.  I played with my dolls.  Maybe I was still holding on to the idea that I would pass them on to someone one day.  So, on packing day, I found the box in the hall closet, carried it to the living room, sat down in the floor, opened the box and prepared for a walk down memory lane.

As I pulled each doll from the box, I realized that they were in pretty bad shape.  Like I said, I played with my dolls.  Not only were they not collector items, they weren't even something to be passed on to the most wide eyed little girl.  Their hair was matted and tangled, or missing all together.  As I removed each doll, I would say her name and state her special ability, such as, "Oh, it's Cathy Quick Curl.  She had hair you could curl with a little curling wand.  And, it's Peaches the Puppet Girl.  She had little puppets you stuck in her hand and when you pulled her string she made the different puppets talk.  This is Me Too Baby.  I think I named her that because she looked like the baby sister in a book I had called Me Too.  When you laid her on her back she made a little cooing sound and her eyes closed, and when you sat her up, her eyes opened. Oh, and look, it's Baby Tender Love. I loved her.  This was my third one.  She drank a bottle and peed." But, I noticed that not only was Cathy Quick Curl's hair mostly gone; all of Peaches puppets were missing and when you pulled her string, she did a sort of Darth Vader impression; Me Too baby's eyes were stuck closed; and Baby Tender Love, whose mouth used to make nursing motions when she drank her bottle, had a split lip showing metal like a little Terminator baby. When I pulled out the one legged Ken doll, my brother Mark exclaimed, with a look somewhere between horror and disgust, "Dolls are so creepy!"

I reluctantly packed the poor misfit dolls back into the box, and looked sadly at my mother who had been watching me closely through this whole process.  I really think she was seeing the little girl Suzi who dearly loved every one of those dolls and played with them constantly.  When I announced that I didn't think any of them were worth saving and were probably just trash, mom said, "But you can't just throw them away.  That would be like murder!"  She had me there.  So, I promptly carried the box out and loaded it into my car, with the intention of taking them home to throw in the garbage in order to save my mother the trauma of murdering my childhood babies.

Upon arriving back home, I carried the box of dolls into the house while Scott looked on in disapproval. While I had made a virtual pinkie swear to resist the urge to load up my car with lost treasures, here I was unloading a box of beat up babies, along with a big bag of my great-grandmother's needle point, a couple of children's books (including the above mentioned "Me Too" book which I loved so much as a little girl) and some clothes and shoes dating back to Mom's shop-a-holic days that I rescued from her closet.  Over all, I thought I held up my end of the bargain pretty well.

The box of dolls sat stacked in my guest room for several weeks.  Finally, on a ruthless cleaning day, I announced that the dolls just needed to go. But, I was still having trouble with simply throwing them in the trash, remembering my mother's use of the word murder.  Then I had the bright idea to just put the whole box up by the road and see if anybody took them. I guess it's a fact of life most places, that if you want to get rid of something you simply place it at the road and it will disappear.  So, we carried the box out and set it between the driveway and the road.  Scott even opened the lid to the box so passing cars or pedestrians could get a good look at the merchandise.  That's when it really got creepy.  There was a beat up cardboard box, with the lid thrown back, and all those nappy headed dolls staring vacantly at passersby.  Upon leaving and returning in the car at one point during the day, I noticed that the Me Too baby now had both eyes wide open, but one of them had bleached out white so she had one brown eye and one glowing white eye.  I realized at the moment that nobody was going to take that box of misfit toys.  I had to admit that they truly were bound for the trash.

Being the nice guy and good husband that he is, Scott volunteered to dispose of the pitiful collection for me, thus saving me the heartache.  He didn't even announce when he was going to take care of it, only promised me that they would go away and I wouldn't have to watch.  Much later that day, I was working, when I heard Scott come in from outside and exclaim loudly, "Well, that was horrific!"

Since I had last taken a peek at the box of horrors terrorizing the neighborhood, it had rained.  It seems that at that point, the dolls were all water logged, what hair that remained was plastered down to their little plastic heads, the ratty frills on their dresses made thin and even more threadbare by the soaking.  The poor stuffed Raggedy Ann doll was bloated with water.  And through it all, the Me Too baby with her big blind white eye was staring accusingly at the cruel world that had left her as no more than a pile of wet garbage on the side of the road.

Scott dragged the box back to the trash can, and Me Too baby was the first one thrown in.  As she hit the bottom of the can and landed on her back, she made her little signature cooing sound, and the eyes, which should have closed for the last time, remained wide open, one brown and one glowing white, staring up from the depths of the trash can.  Poor Scott.  The plaintive little cry coming from the bottom of the can was just the creepy finishing touch he needed on the whole macabre scene.  But, then it got worse.  As each and every water logged doll followed Me Too into the trash can and landed on her soft upturned belly, they caused her to make the coo or crying sound...every single doll, every single time.

The trash can is waiting by the road for trash pick up day, and I try not to think too much about its contents.  I admit that I'm afraid to get too close to the can for fear I will hear that little cooing cry coming from inside.  I hope the garbage men don't hear it and attempt a rescue only to find the creepy valley of the misfit dolls inside.  That is truly the stuff of nightmares.

One more for the road...

"So make it one for my baby, and one more for the road."  ~The Chairman Of The Board, Frank Sinatra

Yeah, well, so my good buddy alcohol and I may have to separate for a little while.  Since Scott is in the clinical trial for Nilotinib, he isn't supposed to drink alcohol after starting it today.  Dr. Cote was pretty funny when we were there last month and first discussed drinking while on the drug.  He started by asking if Scott drank alcohol.  I piped up and answered, "Well, doc, we do live in the Keys so it's kind of a way of life." That got a big laugh, but then they started asking if rehab was needed... I had to retract my joke, and I hate having to retract jokes.  Damn doctors for not being able to take a joke.  He said he would prefer that Scott not drink while on the drug.  "Prefer" doesn't mean "NO" but, after today, Scott probably won't be drinking. I know he drank rum in the hotel last night, but as of today, for all intents and purposes, he won't be drinking alcohol until treatment is finished.

What about Suzi?...you may be asking... I know I am!  Out of respect, I will be seriously cutting back on my drinking.  I told Scott that I wasn't going to promise to tee total during all this, but I would cut back, and try not to drink in front of him, much.  I'm not even sure if alcohol is allowed in the Hope Lodge....probably not. I would guess most of the patients aren't allowed to drink.  And while the caretakers might NEED to drink, it's not about us, it's about the patients.

So, tonight while Scott is still in Boston, I'm gettin my drink on.  Cheers!