A place for my scribbles...poems, songs, stories, musings and ramblings.

A place for my scribbles...poems, songs, stories, musings and ramblings.

Wednesday, November 27, 2019

Tomorrow is Thanksgiving Day


Tomorrow is Thanksgiving Day.

I remember Thanksgiving's from my childhood and the magic of the day.  Waking up to savory smells as Mama got an early start on the day's cooking.  Sitting in the floor in front of the TV watching parades.  Loading up the food and the family and heading to Grandmama and Granddaddy's.  The entire Dedmon clan gathering every year; an ever growing family and seemingly ever lasting tradition.

But, alas, life moves on. Some cousins (like me) scattered, making it harder to get home for Thanksgiving.  The Grandparents passed one by one, and the family stopped gathering for that day in November.  Mama never said, but I always suspected it made her sad.  Thanksgiving had been such an important holiday to Grandmama. I'm sure Mama missed her terribly when the day came and went without her mother.


Tomorrow will be my first Thanksgiving Day without my mother.

It's been almost nine months since Mama died.  Strange how much it hurts just to type those words.  Mama died.  But, she did.  Nine months ago.  I made it through Mother's Day without her to wish a happy day.  I made it through my birthday without her wishing me a happy day.  I'll make it through tomorrow, and I'll make it through Christmas and then New Year's, and then her birthday, and then it will be a year anniversary I never wanted to celebrate.  I'll make it through, but my god I miss her.

I've been thinking and reading about grief and dealing with loss, and there is one thing I've realized. There is no time limit on grieving.  It doesn't get easier as time goes on.  I guess it does become easier in the sense that it's no longer a raw gaping wound; once the shock wears off it's more of a dull ache -  unless you pick at it too much and find it's every bit as raw as it was 9 months ago.  The months following her passing, I was so busy that I told myself I didn't have time to give into grieving, and I still don't feel like I've actually fully grieved.  I'm not even sure what that means, or what I think I need.  Maybe to curl into a ball and cry for a week, a month, a year...?  But who has time for that?  I give in to tiny cries (usually when I'm driving) then tell myself to suck it up and dry it up.  I'm a busy lady, with things to do and people to see.  But, inside I'm a little girl who just misses her mama.


Tomorrow is Thanksgiving Day and I will be thankful.

But, tonight I'm going to cry for my Grandparents. Tonight I'm going to cry for my cousin who chose to leave this world on a Thanksgiving Day.  Tonight I'm going to cry for the family ties that were once so much tighter.  Tonight I'm going to cry for my Mama.  Tonight I'm going to cry...

Tomorrow I will wake up and cook so there are savory smells to smell in the house.  Tomorrow I'll watch a parade. I'll talk to my Daddy and my brothers. I'll make my Happy Thanksgiving social media posts. I'll have dinner with friends. Tomorrow I'll smile. Tomorrow I'll be thankful for all of those family Thanksgiving memories.  Tomorrow I'll be thankful that I have loved and been loved enough to hurt for those I've lost. Tomorrow I will remember my Mama and be happy that I had her as long as I did.  Tomorrow I will be thankful.

Tomorrow is Thanksgiving Day.




Sunday, January 13, 2019

Re-Wire Your Brain For Happiness


Sometimes it seems like we are surrounded by negativity.  It’s all around us.  We turn on the TV and hear politicians insulting each other; open up social media and see hateful posts and comments; drive down the road and deal with hostile drivers; it seems even magazine covers are designed to upset and inflame us more than entertain.  The world can seemingly be a more and more negative place, and every day we are affected by that negativity whether we realize it or not.  The power of negative thought can influence our mood, our relationships and our health.  Negative thoughts like fear and worry, guilt and regret, jealousy, and sadness cause stress and stress can wreak havoc on both our physical and mental health.





But this trend can be reversed.  The only more thing more powerful than the power of negative thought is the power of positivity, the power of happiness.  
Studies show that people who are generally happier and more optimistic tend to be healthier and more successful.  

Based on many psychological tests, happy people seem to have a special quality that enables them to live a better life than the average.  Can you guess what it is?  It is the quality of optimism and positive thinking!  The best news about optimism is that it is a learnable quality. You can learn to be a more confident and optimistic person and have a more positive attitude by thinking the way optimists do. 

By the law of cause and effect, if you do and say what other healthy, happy people do and say, you will soon feel the same way, get the same results, and enjoy the same positive attitude and experiences that they do.


Think about what you want

Can you guess what the most successful and happy people think about all day long? The answer is simple.  Healthy, happy people think about what they want, and how to get it, most of the time. The power of positive thinking and developing a positive attitude are two of the most important qualities a person can have to change their life.

When you think and talk about what you want and how to get it, you feel happier and in greater control of your life.  When you are thinking about something that makes you happy, your brain actually releases endorphins, which give you a generalized feeling of well-being.  As a result, you develop a positive attitude.  



Be kind


Happy and positive people are kind to others. Kindness to others is good for your health. Studies show that even "micro-moments" of connection with others, like sharing a smile or expressing concern, improve emotional resilience, boost the immune system, and reduce susceptibility to depression and anxiety.  Moments of uplifting positive emotions function like nutrients for creativity, growth and health.



Stop the negativity

We all talk to ourselves without realizing it. There’s a little voice inside our head which runs an ongoing commentary on everything we’re doing. It becomes the backing tape to our lives. But, if you’re constantly saying negative things to yourself, guess what? You’ll feel bad.

So change the tape to something more helpful. Be your own best friend, inner coach and guru by saying the kind of positive encouraging things you would say to a very good friend. This will help you think positive, feel positive and act positive.



Be grateful

Begin each day by making a list of three things that you are thankful for, or three specific good things that happened the day before and reflect on what caused them to happen. The good things could be anything — bumping into an old friend, a positive remark from someone at work, a pretty sunset.  Celebrating small wins also has a proven effect of powering motivation and igniting joy. As you record your good things daily, you will begin to feel happier and more positive every day.




In the end, it seems it’s all about perception. Like life, it depends on how you choose to view it. If you start making positive changes to your daily habit and personal ‘system’ for living well, you will soon notice a definite upturn in your happiness and wellbeing. Repetition is the key to success, forming new neural pathways and patterns of response in the brain.

It’s good to know science now seems to confirm, you can quite literally ‘rewire your brain for optimum happiness.’




We have the power to change our minds and change the world.



Saturday, January 6, 2018

Hope Is Where The Heart Is (5)

"Hope is where the heart is." Wonderful words, written by my dear friend Lisa just before we lost her to leukemia at the young age of 32. She used it to say that those who had never suffered in some way were missing out on understanding the joy of hope. She was an amazing person and inspired everyone around her right up until the day she was taken far too soon.

I wrote the first blog entry under this heading back in April 2014 when Scott was first diagnosed with cancer. What a journey it's been! (Sorry Scott, I know I'm not supposed to refer to it as a journey unless we're going on a cruise...but you won't go on a cruise!) Scott still endures the agony of scanxiety every six months, and he never has to wonder if he'll meet his insurance deductible, but he remains cancer free, and that's a wonderful thing. Our good friend Jeffrey, our "2 in a million" friend, was also recently declared clear after a long, hard battle. He was the other chordoma patient right here in the Keys; statistically impossible, and yet, there it is. We are thrilled for him that he can now look forward to the rest of his life!

Many we know haven't been so lucky. We lost another chordoma warrior this week. A beautiful young angel named Madison Rose. She was 23 years old. When I read the words this morning, I sobbed. First I yelled an expletive I won't repeat here, then I sobbed. I sobbed for a girl who's late teen and early adult years had been nothing but surgeries, treatments, recovery, wash, rinse, repeat. She had endured so much by the time we met her, and yet still smiled the biggest, brightest smile. When I met her, she was in a hospital room at MGH undergoing chemo. She had no hair, was very thin, wearing sweat pants and a Boston Strong t-shirt, hooked up to tubes and wires, but she still sat up and talked and laughed and made everyone in the room feel better. She was one of those souls who gave hope to everyone trying to comfort and take care of her. Her strength, courage and grace were amazing, especially for one so young. She was 19 when we met her, in Boston for her second surgery. She and her family were so full of hope, it was contagious.

It was really Madi's dad, Chris, who started it all! When Scott was first diagnosed, he "went a little crazy" (his words) and did a lot of research; as a result he found a wonderful chordoma support group on Facebook. It was so helpful to us...we found out that MGH was where the experts were, found out about Hope Lodge, and so much more from that group. We jokingly say that Facebook saved Scott's life. I don't know what we would have done without the information, advice, support and encouragement we received from that group. Scott was pretty open on social media, and that extended to the chordoma group.

As you can imagine, a lot of the people we met on the group page were also seeking treatment, or had been treated, at Massachusetts General Hospital. Many had the same doctors, and many also stayed at Hope Lodge. It's such a small number of people who have chordoma, it's really a small community. Scott was in the breakfast line at the hospital cafeteria, "Eat Street," (where they had the best breakfast sandwiches in Boston!) when he heard someone behind him say, "Are you Scott?" When Scott turned around the guy behind him said again, "Are you Scott? I recognize your jammie jeans." Many jokes and pictures had been bantered around on Facebook about Scott and his jammie jeans, and Chris recognized him! That happened after Scott had been in Boston for almost a month, and during those 2 weeks that I came home and let his parents take turns staying with him. I believe his dad was there when they met Chris and Madi's mom, Colleen. Madi was post-op and not up to visitors, but Scott and Chris became instant friends.

I met them through email and social media right away. Scott and Madi exchanged encouraging messages to each other. She sent him this picture when he was in the hospital, post-op. I remember how it made him smile!

Her hair was growing back, and she looked so cute and healthy. Hard to believe that just a month later, she was back at MGH for another round of chemo.  Her chordoma was clival (at the base of her skull.)

I was finally able to meet Chris a few weeks later, along with his wife Angela, and Madi's mom, Colleen. On one of our daily visits to the hospital for Scott's treatment, Madi felt up to saying hello and we spent some time in her hospital room with her and her family. Chris later wrote about our meeting and the "uncommon bond" Madi and Scott shared on Madi's blog page:
Madison Rose-One In A Million: West Joins East/East Meets West

Later in the summer, following Scott's surgery, Madi was back in Boston for chemo. We were able to have breakfast with Chris and Angela, and even meet up with Chris in the hospital lobby when we had to go in for a check up. Here are he and Scott chatting while I was in line at the pharmacy. Scott is laying down because he still wasn't able to sit well during this time.

I remember we were planning to ride the "T" back to Hope Lodge like normal, but Chris insisted on paying for an Uber ride. He requested the larger Uber EX so Scott could lay down in the back seat. Chris was so helpful and encouraging to both Scott and me during that time. He was the first person to warn me about friendships and relationships changing as a result of what we were going through. We really did seem to share a bond, the uncommon bond of chordoma. Even though he was constantly worried and in fear for his baby girl, he would still find time to send us information and helpful advice. He even ended up taking on an administrative role for the Facebook chordoma group page.

We continued to stay in touch periodically after that. We followed Chris's blog and knew that Madi had a couple of set backs. It was so hard to hear that she had started back to college!...then hear that she was back for more chemo or another surgery. I knew it was a difficult road for her, but they were such a strong family, and she remained such a shining beacon of strength and hope. It never entered my mind to consider any option other than her beating chordoma finally and going on to live her life to it's fullest.

When I read the words this morning, I sobbed. I sobbed for that beautiful young girl, with so much life to be lived. I sobbed for her father. I sobbed for her mothers. I sobbed for my own guilt over feeling grateful that Scott's outcome wasn't the same. I sobbed because cancer has claimed one more person. I sobbed because we lost a little bit of light from the world this week. I sobbed because I know that Madi and her family experienced and understand the tragic beauty and wonder of hope. And even when it breaks your heart, hope is where the heart is.



READ MORE STORIES ABOUT LIVING IN HOPE

Saturday, September 3, 2016

By the Way...

It was late in the year of 1992, and I had been dating Scott for a few months when I wrote the words to "By the Way."  I remember that I gave him a copy of my love poem, and when I saw him again 2 days later he had turned my poem into a song.  I've been writing verse for as long as I can remember, often humming along with the tune in my head as I wrote.  It is an indescribable thrill to have someone hear the song in my words.  With his lovely finger picking and string harmonics, together we wrote a beautiful song, if I do say so myself!

He is performing at a wedding today, and the couple chose it as their recessional song.  The first time he performed "By the Way" at a wedding was for some friends and we were actually in the wedding party.  Tony and Shelly loved our song and had Scott play and sing it for their first dance.
That was in 1999.

Over the years, he has played more weddings than he can even remember. Many brides and grooms request "By the Way" because they've heard it on his CD or on the website, and sometimes he will suggest they listen to it if they are unsure about a song.  Many couples have recessed to it, many have danced their first dance to it, and a few brides have even walked the aisle to it.  Early on, I remember Scott telling me about a couple who requested it for their first dance; they sang along to each other and knew every single word.

It's strange to realize how many weddings have included my words, our song.  How many couples will know that song for the rest of their lives because it was part of their special day?  That is really so cool!  I have to admit that I am quite proud of our beautiful love song.


"...and then you reached out to me and you put your hand in mine,
and you said that life's a song, and we were the next line.
And by the way, I'm in love with you today."



Listen to "By the Way" on Spotify:
https://play.spotify.com/album/0ogKRgSR9weV5g2Wuq1WIl

Listen on Scott's website:
http://www.scottyoungberg.com/






Lyrics at:
http://suzisscribbles.blogspot.com/2009/07/by-way.html




Thursday, December 3, 2015

Une Journée Français avec Teresa

(A French Day with Teresa)

Scott and I had been living in the Keys for about a year when I received a phone call from Cousin Teresa saying she was coming to Miami and wanted to get together.  Teresa had been living overseas for several years, Germany and France.  I know she ended up living in Japan as well, but I’m not sure of the time line.  I’m pretty sure she was living in France at the time she visited us.

She was traveling with friends of hers; a French couple who had asked (hired?) her to travel with them and act as interpreter since they spoke no English.  Teresa was a language major.  A funny side story… when Teresa was very small, she had a serious speech impediment.  Her older brother, Tony, was the only one who could understand her and he would act as her interpreter.  I was always proud of her for not only overcoming her “handicap” but totally making it her bitch!  It’s a little bit ironic as well.

When she arrived in Miami, Teresa called me and we decided on a day to get together.  We lived 2+ hours from Miami, but they wanted to come down and see the Keys.  They came to our house and then we went to lunch at Hawk’s Cay, a resort nearby, on the ocean, with dolphins.  As mentioned, the couple she was traveling with spoke no English.  When introductions were made, we picked up the man’s name as Remi, but for the life of us, neither of us ever understood the woman’s name.  So, they have become forever dubbed Remi and Remi’s Wife in our memories. 

We had a very nice lunch.  I hadn’t seen Teresa in many years at that time, so we enjoyed catching up and talking about the family and her adventures in Europe.  Scott entertained Remi and Remi’s Wife with his pigeon French.  I remember them getting a kick out of him saying “Mon crayon est orange.”  I don’t think they quite knew what to think of Scott.

Of course, as it turns out, they didn’t quite know what to think of either of us.  Scott and I both asked for “to go” boxes for our left over lunches.  As the server brought the containers and we started scooping food into them, we noticed Teresa in animated conversation, in French, with the couple.  They were obviously asking her questions and she was explaining something to them, but they remained confused.  Finally she said something and they both busted out laughing.  I mean they laughed hard!

Sheepishly, Teresa turned to us and explained what had transpired.  They had asked her the purpose of the cardboard containers we were given by our server.  Apparently, in Europe, they don’t do doggie bags.  In her attempt to explain it to them, Teresa used the term “doggie bag.”  At that point, they had seemed to understand…they had met our 4 cats when they stopped by our house, and assumed it was more of a “kitty bag” and that the food was for our cats.  When Teresa further explained that, no, we were actually going to eat the leftover food at a later time, they found that to be hysterical.  They kind of looked at us differently the rest of the day.

We finished lunch and they stopped back by our place for goodbyes, and then headed back to Miami.  I remember how much I enjoyed spending that day with Teresa.  We had spent so much time together as children, but hadn’t hung out much as adults.  My clearest memories of her were, and still are, playing Batman with her, Tony and Mark.  Batman and Robin were obviously taken, so I played Bat Girl and she was Bat Baby!  We had a lot of good times.  But, it was really nice to spend that day in the Keys with her, and so pleasantly unexpected.  I remember how pretty she looked.  She smiled that big smile of hers a lot and seemed genuinely happy.  It’s a great memory.



(We lost my cousin Teresa last week, the day before Thanksgiving.  RIP pretty girl. Bon Voyage.)



It's Been A Sad Sad Day

It’s been a sad sad day
My heart is hurting for the family
The broken sister, the hollow brother
     and the shells that once were parents
The helplessness of senseless tragedy
The unsaid goodbyes, the selfish drama
     and the shells that once were parents

It’s been a sad sad day
My heart is aching for your smile again
The broken front tooth, and eyes
     that twinkled and shone the sweetest softest blue
The bitterness of regret and blame
The love, the kindness, in eyes
     that twinkled and shone the sweetest softest blue

It’s been a sad sad day
My heart is yearning for a word from you
The broken hearted, the ones
     that make me laugh and the ones that make me cry
The hopelessness they draw out of you
The way your words dance, the way
     they make me fly and the way they make me cry

It’s been a sad sad day
It’s been a sad sad day
I don’t want to play
Please don’t go away
It’s been a sad sad day
It’s been a sad sad day
I don’t want to play
Please come back to stay
It’s been a sad sad day

Saturday, August 29, 2015

Hope Is Where The Heart Is (4)

It's that time again.  We leave tomorrow for another trip to Boston.  It's funny the mixed feelings I have towards that city!  On the one hand, every time I have headed that direction, there has been a sense of anxiety and dread.  On the other hand, they saved my husband's life there, so the city of Boston will forever have a special place in my heart.

It was one year ago that they removed the tumor and Scott became "cancer free."  Aren't those beautiful words?  Six months ago, we heard those same words, and we'll hear them again on Monday. 

Being sure we'll hear good news doesn't lessen the anxiety...or scanxiety.  It's a strange mixture of feelings itself.  On the one hand, I have absolutely no doubt that the results of the scans will be good, Cancer Free!  But, on the other hand, I am still terrified.  Scanxiety, indeed.

But, we have Love!  Love makes us strong, love is strength.  
We have Faith!  Faith and belief that the best is yet to come
And we have Hope!  Hope is Strong!  Hope Is Where The Heart Is!
Hope, Love and Faith all together are unstoppable! 



Read more about Scott's story, and our story of HOPE.

Tuesday, August 18, 2015

We Scattered The Ashes Down The Mountainside


We scattered the ashes down the mountainside
Watched as they spread over the wildflowers
And thought about all the love that had died
Watched as the ashes turned into powder
And thought about all the love there was still to come

We scattered the ashes down the mountainside
Watched as they blew away with the wind
And thought about things best left in the past
Watched as ash and mountain began to blend
And thought about how earth, not ash, is meant to last

We scattered the ashes down the mountainside
Watched them catch the sunlight beams
And thought about the shadows that they cast
Watched them like they were fragments of our dreams
And thought about how life, not dreams, is meant to last

We scattered the ashes down the mountainside
Watched as they spread over the wildflowers
And thought about all the love that had died
Watched as the ashes turned into powder
And thought about all the love there was still to come

Tuesday, July 21, 2015

Why Are We So Angry?

Something happened to me this morning and I can't stop thinking about it.  I saw something on social media, Facebook, and I was so troubled by what I read; so disheartened by the words of a few people, that I lashed out at a whole town.  A town that I call home.  A town full of people that I love.  A town that is reeling and hurting.  I denied my hometown and I am ashamed.  I worry that I offended people and I am sorry.  I let a few haters color my perspective, change my mood and affect my behavior; and for that I am deeply troubled.

I've been thinking about the nature of negativity and anger.  We seem to be an angry people these days.  We are quick to offend and easily offended.  We watch our leaders attack each other verbally, and we tune into news broadcasts which seem to thrive on keeping us angry.

I read an article a while ago titled, "I Lost My Father To Fox News."  The writer claimed that his father, a once reasonable man, had spent so many hours listening to the rhetoric of hate and anger spewed by Fox News that he had turned into an angry, frustrated man with whom it was impossible to have a logical, reasonable conversation.  If you know me very well, you know how I feel about Fox News, so you can imagine how tickled I was with that story.  I quoted it and used it as ammunition against the faux news channel.  But, this morning as I sat in my bed watching CNN and finding myself filled with righteous indignation over some teaser story or other, I realized that it's not just Fox News...it's all of them.  Some are more blatant and obvious about it, but it does in fact seem that the media thrives on keeping us angry.

Today I watch as the newscasters debate some story of social significance, taking different sides and actually yelling and getting worked up to make their respective points.  They bring in experts who speak in circles and try to sound smarter than the other expert, they argue their points, they make sarcastic comments to and about each other and anyone who doesn't agree with them.  I watch the anchor actually pound his fist on the desk to emphasize how angry he is about the subject at hand.  
With the report of the fist banging still echoing, the same anchor turns his body slightly to look into another camera, the angry grimace melting magically into an ingratiating smile as he announces, "Up next - Do you like dark or milk chocolate and what does that say about your personality?  We'll be back after the break," and the camera pans out as that same group of newscasters, so adamant just moments ago, now debate what kind of chocolate they prefer.  No wonder we are angry.

It's troubling to me how quickly people are to jump on social media to spread some message that is sure to offend or even incite, without even checking the facts.  People share and spread memes, blogs and articles without verifying the sources or confirming the truth.  Why are folks so quick to jump on the anger band wagon?  Why does it seem we are looking for a reason to get mad?  Why do our news media engines feel the need to feed and fan the fires of that anger?  Who benefits from so much anger?

Maybe it's time to try something different.  Instead of letting them get us worked up, turn them off, tune them out, and turn up the love.  Turn up positive thoughts and good deeds.  Make only positive posts and loving comments on social media.  Turn off the violent television shows and movies.  Turn on loving conversation with family and friends.  Turn off gossip.  Tell your loved ones how much they mean to you.  The greatest thing in this world is to love and be loved in return.  Give and receive so much love that there is no room in your heart or your world for anger or hate.

I am making a vow right now to think more positive thoughts and kick out negativity and anger.
Won't you join me?  Let's all work together to bring more love, light, joy and peace into the world.

Turn off anger, turn on love.


What are your thoughts on stopping negativity and spreading more love in the world?



Monday, June 15, 2015

Wondering Why

This is an oldie that I came across in my scribble files.  It was written about the same time as "Song Of The Sea" and kind of shares a common theme.  


Wondering Why

I’ve been wondering why
the world turns the way
that I’m walking into the sun

And I’m listening as
the sea sings its song
I feel like my new life’s begun

I’m not arguing that
the goings been good
but it’s wearing me to the ground

We’ve been weathering storms
with sticks and with stones
without ever making a sound

I’ve been harboring ghosts
who’ve haunted my dreams
and it’s high time to set them free

No more lingering doubts
or long lonely nights
It’s clear as the sun on the sea

I’ve been wondering why
the world turns the way
that I’m walking into the sun

And I’m listening as
the sea sings its song
I feel like my new life’s begun

Sunday, May 17, 2015

Like Your Eyes

A little scribble inspired by a stormy morning at the beach.  There were ominous storm clouds over the ocean; rain, thunder, pounding surf...then a rainbow.  



Like Your Eyes

The wind howls for you
The sky cries
     There is violence in the sea
     The ocean is angry with me
The surf pounds for you
The sun lies

The sky is grey for me
Passion dies
     There is violence in my head
     My heart aches for you instead
The sky is grey for me
Like your eyes

The wind lays down for you
Heavy sighs
     There is violence in my dreams
     My world torn apart at the seams
The clouds part for you
The sun tries

The sun shines for me
Hope flies
     There is calmness in my soul
     The sunshine comes and makes me whole
The sky is blue for me
Like your eyes


Saturday, March 21, 2015

Hope Is Where The Heart Is (3)


It has been 6 months since Scott finished cancer treatment, and it's time for the first post-treatment scans.  It's been almost one year since we first heard the word "chordoma."  Life has gotten more or less "back to normal."  Scott is working regularly, and is doing very well.  His strength will take a while to come back, he still gets fatigued, and he still has a deal of pain, but when we think about all that he went through, it's a miracle he is doing so well.

Now we prepare for a return trip to Boston for scans.  I've picked up a new term over this last year, "scanxiety."  Following the chordoma support group on facebook, I've read many stories of the fear and anxiety leading up to follow up scans.  Chordomas like to come back, and that's a scary thought.
In it's own weird way, almost scarier than initially hearing the diagnosis.  Thinking back, once the "C" word was out, all focus, thought and energy went into figuring out what needed to be done next and dealing with setting up treatment, surgery, travel, lodging, caregivers, insurance, financial aid, etc.  There wasn't enough time or energy left over to worry about even the possibility of treatment failing or a return of the tumor at some point in the future.  But now, with all that behind us, I find myself terrified at the prospect of going through it all again.

Having watched Scott handle whatever was thrown at him for 6 months, I can't imagine having to watch him endure it all over again.  I have figured out that when people refer to cancer patients and survivors as warriors, and talk about fighting and staying strong, it's because the cure is hell.  Cancer patients go through hell to come out well again.  To watch them making that journey through hell with grace and especially with a sense of humor, is truly something amazing to observe.  But, they do it because it's what must be done.  Life wins.  But, to knowingly take that same path again, and sometimes again and again...to walk back into hell, with the memory and scars of your last visit there still fresh on your brain and your skin and bones, takes more strength and courage than is right to expect of any human being.  But, they do it everyday.  You do what you have to do to live.  Because life wins.  Still, it breaks my heart for Scott having to even contemplate the possibility of walking back into hell while he is still healing from his last trip.

I know that his scans will be clear.  I KNOW they will be clear.  And, I truly think he believes that they will be clear.  He hasn't expressed a lot of fear or scanxiety, but it must be there.  I've joked that I am more nervous about it than him, but of course that isn't true.  I think his dreams are troubled, how could they not be?

His scans will be clear this time, his scans in 6 months will be clear, and the next and the next, and the next, and so on...  HOPE is strong, HOPE is strength, HOPE is courage, HOPE IS WHERE THE HEART IS.

Hope Is Where The Heart Is (1)
Hope Is Where The Heart Is (2)

Thursday, March 12, 2015

Alligator Alley

I can see the first glow of the sunrise in my rear-view mirror as I go through the toll plaza, heading west on Alligator Alley.  The posted speed limit through the toll booth is 25 MPH, but only the tourists go that slow and nearly cause the local drivers to have accidents and strokes.  I tap the brakes, slowing to a modest 40 as I cruise through the lane marked “Sunpass Only.”  The credit card sized sticker on my windshield makes no sound, and I smile to myself thinking about the old transponders. 

They were clunky grey boxes that stuck to the windshield with suction cups, which didn't always do their job when the glass was heated by the Florida sun and often ended up on the floor.  When passing through a toll booth, the old transponders would beep reassuringly to let you know the toll had been paid.  Years ago, when my mother could still travel and my parents visited often, I had given them a Sunpass transponder and set up an account on my credit card.  On one of their drives from north Georgia to the Keys, the battery was weak in their transponder and it didn't beep when going through a few of the tolls.  My mother worried the entire drive and the way home (even though we replaced the battery for their return trip.)  She was convinced they were going to be arrested for not paying those tolls.  A few years later they were planning another visit, when Daddy told me that Mama was scared to go back to Florida because she worried as soon as they crossed the state line they would be arrested for dodging those tolls two years earlier! 

Accelerating rapidly, I merge from one of 6 toll booths back into two lanes.  Thanking my Honda Pilot’s V6, I quickly pull ahead of the slower traffic and make my way to the left lane.  The speed limit on Alligator Alley is 70 MPH, so when the needle hits 80, I set the cruise control and relax.  Nothing but straight, flat, smooth interstate for the next 80 miles or so.  I hope it’s early enough that I won’t hit much traffic.  I left my house at 5 A.M. for a 10:00 meeting in Sarasota.  Normally that drive takes me just a little over 4 hours, but it's season and the traffic in all of south Florida has been terrible for a month.  The snowbirds have definitely arrived.  So, I allowed 5 hours, giving myself plenty of time for a relaxed drive.  I lean back in the seat and turn up the music.

The road in front of me is straight and flat.  The median is wide, so wide that in some places the oncoming lanes aren't visible.  The terrain is flat and scrubby.  Scraggly palm trees dot the landscape, surrounded by lush palmetto, cattails, saw grass and wire grass.  A canal borders both sides of the interstate, but I know there is also plenty of water under all that green.  They don’t call it the River Of Grass for nothing.  As the first rays of the early morning sun reflect off the surface of the canal to my right, I see a dark shiny arrow shape cutting a wake slowly across the glassy surface of the water.  My first ‘gator of the drive!  A little further up the road, another glance to my right reveals two large alligators sunning themselves on a rock beside the water.  I am both fascinated and terrified of alligators at the same time.  One of my biggest fears is crashing into the canal and being eaten by ‘gators!

Singing along with Adele about being your one and only, I am really getting into it when I notice that I’m approaching a car ahead of me in the left lane.  For a brief moment, I allow myself to hope that he will see me approaching and move over to the right lane as it is wide open.  Getting ever closer and with no sign of a turn signal, that slender hope fades.  Hoping to avoid releasing my cruise control, while I’m still several car lengths behind him or her (in my mind, I’ve already named them Indiana Lexus,) I go ahead and move over to the right lane preparing to pass without even getting upset about it.  As I come alongside Indiana Lexus, they suddenly accelerate, pulling ahead and leaving me behind.  Shrugging and shaking my head, unsure what reason could have prompted such behavior, I’m just happy to be rid of them, and continue in the right lane without ever changing my speed or coming off cruise.  I go back to singing.  Adele has been replaced by Brandi Carlile singing about the lines on her face.  I glance up at my reflection in the rear-view mirror and think about the stories the lines on my face tell.

For almost ten minutes I drive in the right lane with no other traffic in sight, singing and ‘gator spotting.  After a while, I notice that I am approaching a car in the right lane ahead, so I verify there is no other traffic behind and slowly drift over to the left lane.  As I get closer to the vehicle in the right lane, I realize that it is Indiana Lexus.  Once again, as I come alongside them, this time on the left hand side, they suddenly accelerate and speed off ahead.  “Weirdo,” I say aloud.  No problem, I continue on.  

Within just a few minutes, I start to close the gap between myself and Indiana Lexus, who is now in the left lane because there is a semi in the right lane ahead.  I peer around and it doesn't look like I can get around IL before catching up to the truck.  So, I approach patiently, releasing my cruise control for the first time.  Looking down at the speedometer, I watch the needle drop from 80 to 75, now 70…Indiana Lexus slows down to 65 miles per hour as we are passing the truck.  I admit that I cuss at this point.  As IL finally starts to pull ahead of the truck, I assume they will move over since they are going so slow.  But, no.  I am forced to wait until I also finally pull ahead of the truck, and have to change lanes and once again pass Indiana Lexus on the right.

As I come alongside them, what do you think happened?  At this point I am getting angry.  My peaceful morning drive, singing and looking at wildlife, is being seriously harshed.  But then, after hanging neck and neck for a mile or so, they finally drop back and I see them in my rear-view mirror, moving over to the right lane.  Satisfied, I turn up the music and once again begin to sing along.  Now it’s the Avett Brothers, “Brooklyn, Brooklyn take me in…”  It’s fun to sing along with the Avett’s, especially when they get to the screaming parts; as long as there is not another soul within ear shot.

There is another semi-truck in the right lane ahead, so I make sure it’s safe and move to the left lane to pass.  In my rear-view, I see Indiana do the same and fall in behind me.  Without changing my speed (I’m still on cruise control) I begin to pass the truck.  Indiana Lexus is coming ever closer in my rear-view.  By the time I am clear of the truck, they are on my ass so bad that I can’t see their headlights.  Now I am really mad.  Of course I don’t move over once I’m clear of the truck.  Resisting a strong urge to tap my brakes and scare the crap out of them, I just maintain my position and speed.  Finally IL moves over in front of the truck, accelerates and speeds past me on the right.  Resisting another very strong urge to flip them my middle finger, I admit that I look over, hold up my hand and give him (yes, I finally see that it's a him) the “WTH?” gesture.  My will power is rewarded with a middle finger out the window as the Lexus speeds by.  

Thankfully, I have reached the end of Alligator Alley and the first Naples exit is only a couple miles ahead.  I slow down just a bit and decide to stop for the usual pit stop stuff, and for a “breather,” but mostly to let that jerk get out of my life before I respond and ruin my day.

I make my way back onto I-75 north a little later, sipping a fresh hot coffee and listening to Little Feat sing about all the trouble I've had today, and I wonder about Indiana Lexus.  What do you think was going through his mind during that time?  Did he think that I was being aggressive and that he was totally innocent?  I often wonder about the mentality of people on the road and wish that cars had cartoon thought bubbles over them with the driver’s thoughts inside.  I’m always saying, well probably yelling, “What are you thinking?!”  In discussing this phenomenon with others in the past, I've heard people say that it is of course a competitive streak, and that we are all guilty of it.  As much as I drive, I've given this a lot of thought and I don’t agree. 

I think it’s probably two different types of people.  1)  The competitive driver doesn't like to be passed, likes to aggravate other drivers just because he can, even possibly without truly realizing it.  2) The distracted driver who just doesn't pay attention to their speed or lanes until they realize another vehicle is involved, and then they respond in such a way to make the matter worse.  Either way, I don’t have much patience with them.  

I try to drive the speed at which I’m comfortable; I move over for faster traffic and expect the same in return.  In general, I try to drive in such a way that my actions never cause another driver to change their behavior because of me.  And, I expect the same in return.  Unfortunately, I realized long ago that my expectations are always miles too high.  

I hope my return trip across Alligator Alley will be uneventful.



Friday, January 30, 2015

The Way You Say My Name

She misses the way he looked at her
The way he said her name
The way his kisses caused her to shudder
His touch like igniting a flame

He misses the way she wanted him
Made him feel like a man
The way her kiss set his head to spinning
On fire from the touch of her hand

     Has the spark gone cold?
     I miss the heat of the flame
     Has this love grown old?
     I miss the way you say my name

     I miss the way, I miss the way 
     I miss the way you say my name
     I miss the way, I miss the way 
     I miss the way you say my name

She misses the way he looked at her
The way he said her name
He misses her kisses that caused him to shudder
Her touch like igniting a flame

     Has the spark gone cold?
     I miss the heat of the flame
     Has this love grown old?
     I miss the way you say my name

     I miss the way, I miss the way
     I miss the way you say my name
     I miss the way, I miss the way
     I miss the way you say my name




Tuesday, January 13, 2015

Blame It On Sunday

(I woke up in the middle of the night and wrote most of this, dictating it into my phone, tune and all.  Blame it on insomnia!)

Blame it on a day where 
   there’s nothing else to do
But sit here in my chair     
   and think about you
I might have a couple drinks     
   to calm my shaking hands
Then I’ll have a couple more     
   just to wash them down
Just to wash them down
Just to wash them down

I have memories of moments     
   they’re frozen in time
They play out like a movie     
   across my mind
I can keep it all inside     
   hold it all at bay
But the dam bursts open wide     
   every single Sunday
Every single Sunday
Every single Sunday

Blame it on a day where     
   whiskey takes control
Numbs me so I don’t care    
   breaks down the wall
I’ve cried rivers of regret     
   the tears of a clown
Drowning in a bottle     
   head spinning round and round
Head spinning round and round
Head spinning round and round


We said that we’d be okay     
   just you wait and see
Now I wallow in self-pity     
   this one day a week
Blame it on Sunday     
   don’t lay the blame on me
Blame it on Sunday     
   don’t lay the blame on me
Don’t lay the blame on me
Don’t lay the blame on me



Sunday, January 4, 2015

Never Is Enough

The question you asked is hanging in the air
Just floating in between us there
Time around me seems to be stopped
The temperature in the room just dropped
As I realize that we aren’t getting anywhere

People always said that we were such a pair
When we went out they’d stop and stare
Things didn’t turn out like we’d hoped
Would’ve been different if we could’ve coped
Now it’s time to analyze how much we still care

You asked me when is enough?
When is enough, when is enough enough?
When two people are in love

Some are never asked to prove
Most will never force the move
Not until the pushing comes to the shove
Or their lover calls their bluff
Then they’re forced to choose or to lose

So, tell me, when is enough?
When is enough, when is enough enough?
When two people are in love
Never is enough,
Never is enough, never is enough enough
When two people are in love

The question you asked is still hanging out there
Begging me to answer if I dare
Trust is a bubble that shouldn’t be popped
But love is a mountain that can’t be topped
Nobody ever promised you that life would be fair

They always said our kind of love was rare
Flying high on a wing and a prayer
If love is a power that can’t be stopped
A signal so strong it won’t be dropped
Then there’s nothing in this world that we can’t bear

You asked me when is enough?
When is enough, when is enough enough?
When two people are in love

Some are never asked to prove
Most will never force the move
Not until the pushing comes to the shove
Or their lover calls their bluff
Then they’re forced to choose or to lose

So, tell me, when is enough?
When is enough, when is enough enough?
When two people are in love
Never is enough,
Never is enough, never is enough enough
Never is enough,
Never is enough, never is enough enough
When two people are in love

__________

Friday, December 12, 2014

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.


Wednesday, December 10, 2014

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



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Friday, November 28, 2014

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.  
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…

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