July 2017 Update for Tammy – Grace

Hello Merica, on this pretty loud fourth of July night.  I hope you enjoyed this seemingly endless holiday weekend.  I haven’t put out any updates for a while.  May was pretty busy with Kylee graduating and Tanner moving home.  Kylee is going on to Bethany in the fall and will play basketball.  August is going to be fun and I’m sure emotional for us as we have to move #1 and #2 into dorm rooms and houses.  This summer has been pretty uneventful as summer sports for the oldest two have dwindled away.  Morgan has been busy working and playing softball.  We haven’t made it too much softball but we are surrounded by a wonderful crew who have taken up some slack and helped her get to where she needed to be.  Tucker has been spending a lot of time home with Tammy and Kylee.  Kylee has been home most of the summer helping Tammy get things done around the house, entertaining her little brother and getting him anywhere he needs to go.

I think the last post left off after eye surgery and a good report about her lungs.  We were hoping to ride a nice plateau for a while and it has somewhat worked out that way as far as the cancer in her lungs go.  Some side effects have been causing some issues along the way.  I would like to say that the last two months have been great, but I probably would not go that far.  After her eye surgery things were going pretty well.  She had started her chemo up and was going along good.  She got some kind of infection and they put her on antibiotics.  She was on them for a week or so and developed very large blisters on her feet and hands.  They were very painful and she ended up in a wheel chair for a bit.  They took her off all chemo and changed antibiotics.  They started to get better and after another week or so she could start to get back on her feet and be mobile again.  She started chemo up again and after a week or so the blisters started to come back.  After this second time they decided that it was the chemo causing the problems and since then she takes the chemo until she starts to get symptoms and then takes a break for a week or so and then starts it back up.  She can stay on them close to two weeks and then she stops.

She continues to be on steroids everyday.  She tried to stop them at one point and she started to spiral down in the energy department.  Everyone thought it best to keep her on  it.  It’s a pretty small dose everyday, but without it she does not have any energy.  She has had a few infections in the last few months, but has fought through them for the most part and in general has felt okay,  except, that she has been fighting with a sciatic nerve issue for about four months.  Over the last few months this has been getting worse and at this time has made her pretty immobile.  She has had three epidural shots and nothing seems to be getting any better.  After meeting with her neurosurgeon for a check up he told her that he could fix her back problem.  So here we are now on the eve of another surgery.  Tomorrow at 2:30 hopefully she will finally get some relief.

Our brains are pretty amazing when it comes to pain.  It shoots out pain responses to tell us that something is wrong, or that we are injured, but after we are healed it kind of deletes it from our memory.  We forget about how much pain we were once in and some of us do the same stupid thing again.  We heal up and once again we simply forget.  Here a month or so ago I had a very large abscess under my chin.  It was very painful, but a month later I really don’t remember the pain.  I know it hurt, but I don’t remember the pain.  For many people they do not have this luxury.  Pain is a constant.  Pain is their life.  I have been all around the spectrum about Tammy’s pain and how I can help her deal with it.  Anger, sadness, frustration, you name it, I’ve felt it.  When I think about how she deals with it, the only thing that comes to mind is courage.  Courage to face another day through the pain.  My biggest struggle someday’s is to find my own courage, But how can I let my courage falter when she doesn’t.  That brings us to Grace.

Tammy has fought this battle with enough Grace for all of us.  I have been struggling with what I needed to say in my next update.  This is probably why I have put it off for a while.  For some reason Grace came to mind tonight.  I realized that I have been waiting for Grace to cover us, maybe just to cover me, I don’t know.  I realized through Tammy’s grace through pain that maybe sometimes it does not come straight to us.  I realized that I should not be waiting for grace.  Sometimes I am the receiver and sometimes I am the messenger for someone else.  Grace is a pretty complicated word.  Sometimes I need to extend it, sometimes I need to receive it.  I know I am not making much sense, but I know we are always covered by it.  Tomorrow is going to be a very good day.  I hope when she wakes up she is pain-free.  I can’t wait to see her smile that is not pushed through the pain.  I can’t wait to see her after her “Independence day. “

My Wish As A Father

I have tried to teach you, my young souls, a lot of things.  I want you to learn to work hard.  I want you to be humble.  I want you to be a good person.  Most of all I want you to love.  Love what you do.  Love who you are, and Love those around you with no filter,  no boundaries, and no regrets.  I need you to know that in the midst of the fairy tale it is easy to love, but remember that life is not all sunshine and rainbows.  When life gets hard, loving gets hard.  I hope I have taught you how to love.  Now I need you to learn how to be loved.  It is easy to be loved when you are sitting at the end of the rainbow.  I need you to know how to be loved in the middle of the storm.  You know that sometimes you just have to love someone through it.  Just the same, sometimes you have to be loved the same way.  We all get tired, stressed, weak, or are hurting.  Sometimes the person that is wanting to love us is giving us all they have, and it is just not enough for us.  We have to know that we are loved through it.  If they don’t have enough love to give, then we have two choices.  We can choose to love less or we can choose to fill them back up with love.  I hope you choose to be the raindrops that fill their pond and not the wind that blows them down.

 

THE GAS TRUCK

Me and my four-year old went for a walk the other day and we were just shooting the breeze like any father and son might do. Talking about rabbits and frogs and what we might do.  When out of the blue he asks me, “dad why is mom so grouchy when she gets home?”  I was kind of taken aback for a moment and didn’t know what so say, so I said, “well that’s a good question.  Let’s sit down here and talk about it.”  I knew trying to explain this to a four-year old was going to be difficult, so I had to come up with something good.

I thought for a few moments and then said, “You know that picture book with all the big trucks in it?”  He said, “ya I know it.”  I said, “In that book there is a gas truck right.”  He said, “Yep.”  I said, “What does the gas truck do?”  He thought for a minute and said, “Well it drives around and fills people’s gas tanks when they get empty.”  I said, “That’s right, and when the truck is empty what does it do?”  He said “well, it goes home to get filled back up again so it can go fill more tanks.”  I said “exactly right.  You see son, your mom is a teacher and she is very much like that gas truck.  She goes around every day and fills people up with love.  She helps them learn things, and makes them feel important, and just makes sure that they know that somebody cares about them.  But when the end of the day comes her tank is getting pretty empty and so what does she do.  She acts just like that gas truck and goes home to get filled back up with love.”  I asked him, “Who do you think are the lucky people who get to fill her back up?”  He thought for a minute and said, “Well I guess the only people who are at home and that would be me and you.”  I said, “You are exactly right.  Sometimes we have to fill someone up with love before they have enough to give us some back.”

Ruelle- I Get to Love You

“I Get To Love You”

One look at you; my whole life falls in line.
I prayed for you; before I called you mine.
I can’t believe it’s true, sometimes.
I can’t believe it’s true.I get to love you, it’s the best thing that I’ll ever do.
I get to love you, it’s a promise I’m making to you.
Whatever may come; your heart I will choose.
Forever I’m yours, forever I do.
I get to love you, I get to love you.

The way you love, it changes who I am.
I am undone and I thank God once again.
I can’t believe it’s true, sometimes.
I can’t believe it’s true.

I get to love you, it’s the best thing that I’ll ever do.
I get to love you, it’s a promise I’m making to you.
Whatever may come; your heart I will choose.
Forever I’m yours, forever I do.
I get to love you, I get to love you.
I get to love you, I get to love you.

They say love is a journey, I promise that I’ll never leave.
When it’s too heavy to carry, remember this moment with me.
I get to love you, I get to love you,
I get to love you.

By Ruelle

The Trees

We were walking along, my uncle and me.
and wouldn't you know it, we found these magnificent tree's.
We sat down asunder, and started to blumber.
Weaving webs of uncommon splendor with ease.
Just believe me uncle, I say with a chuckle.
tomorrow its going to freeze.
I sneeze.
I am sorry my nephew, I should tell you bless you.
I guess it just got lost in the breeze.
oh, please.
We wiggle and giggle, or maybe giggle then wiggle.
Holding our sides with glee.
The stories don't matter.
Its all just chatter.
Its time, even if he is the Mad Hatter.
that means so much to me.

 

April 2017 update for Tammy- “is”

Easter 2017

I hope you all are having a wonderful spring so far.  Here in Kansas we seem to be having a lot of rain.  That is okay as we have had a pretty dry year so far.  Sorry for not updating after surgery.  We thought that we would have results back pretty fast, but as usual, we had to exercise our patients and just wait.  We finally found out at Tammy’s follow-up appointment which was a good week if not a week and a half from surgery.  The results were not what we were hoping for, but kind of what we expected.  It was cancer.  I decided to wait until we knew what the next plan was before I put anything out there.  The surgery was a success.  The Dr. thought he removed everything that he could see.  Getting any of it out is a success to us.  She started radiation today on her eye area.  She will have 15 treatments and then will be done.  This is the first time she will be on chemo and radiation at the same time.  This does not usually happen because it can make the side effects a little harder, but the doctors feel that she has been off her chemo so much for surgery that they do not want to risk it while she does radiation.  So we are hoping for the best.

Ok, the bad news is over.  Tammy had her appointment with her oncologist yesterday to go over her CT scan from last week.  She hasn’t had a CT of her chest since the last one in St. Louis.  At that time there had been some growth and nothing was slowing it down.  Well, that is no longer the case.  Tammy’s CEA level, which is the cancer level in her blood dropped from 546 to 146, and from what we could tell from the CT, things look pretty stable in there.  BIG SIGH.  As I’ve mentioned before STABLE is a very good word.

It has been a very long winter to get here, but here we are.  Tammy is feeling good for the most part.  She has been having some problems with her sciatic nerve that has been pretty painful lately, but the Dr. thinks he can hopefully help with that.  She is still gaining strength daily.  She is still fighting low cortisol levels and is still on steroids everyday.  There is no comparison to two months ago.  Each day I see her spirits rise higher as her strength gets better.  When we do finally pull through the valley and we find ourselves basking in the warmth of the plateau I always try to look back and see what I have learned.  I am a questioner, meaning I question everything.  I’m sure I drove my parents nuts.  At this point in our journey my first instinct is to ask, “Why are things working now?”  Is it this chemo, is it the vitamin C, is it all of the prayers that have been said for her, or is it her sheer will to get better?  I don’t know, but I have learned that some times it just “is” and for once I am okay with that.

Thank you for all of your shoulders this winter.  There were days that without all of your help life could have been miserable, but with your help we endured.  We are truly thankful!

I Wouldn’t Trade This

Easter 2017

I sat down to write this song
about, living life and how life’s gone.
How little things, and half filled dreams,
just, withered away.

I sat there, wasting time, looking at life, trying to find, where it all went wrong.
How can I write this song?

I rewind time, and watch each frame, and wonder how this all went on, I can’t pull away, I had it all so wrong.

I see happy days with wedding rings, little feet, and big car seats, butterfly kisses, and mac and cheese. How could I be so wrong. Please can this time go on.

I see long car trips, broken bones, High school football, and so many proms, I cant believe I waited so long. How could I have been so wrong.

I rewind time, and watch each frame, and wonder how this all went on, I can’t pull away, I had it all so wrong.

I see left turn signals, the first day gone, late night texts of I love you, go to bed its almost dawn. Where has all the time gone. I can’t believe your on your own.

I see slow gently kisses, catching you from behind, long talks about nothing, your touch just eases my mind. How could I be so blind, I was there the whole time.

I sat down to write this song, about living life, and how life’s gone. How little things, and all my dreams, have come true. Its all because of you.

Our love story goes on and on. I know we will make it, it’s forgone, because of little things, small gold rings, hugs and kisses, you know the finer things.

I’ll hold you close, keep you warm, stand right beside you, fight the storm, make you believe, it’s almost gone, and we will walk away, and maybe kiss all day.
I wouldn’t trade this.
Only God could have made this.
Just hold on.

 

Is He Me

 

This is a song that I co-wrote with Sonny Hale back when we were in college.  We performed it at the talent show at Bethany College.  I included the infamous “Time out.”  A little embarrassing at the time but it has been a great story ever since.  If anyone out there knows where Sonny might be hanging his hat, I would love to know.  I haven’t talked to him in many years and it seems we have lost track of each other.

We wrote this during my whiskey years.  I talked a little about them in my letter to Tammy on Valentines day this year.  It was a very lonely time in my life where nothing made sense.  Deep down I knew what I wanted, but as life is most of the time, it did not follow my schedule.  So in the mean time I tried to drink my loneliness away.  In the process I began to ask if the man I wished to be was gone, or is this really me.

A fun fact was that Tammy was at the talent show that night.  It was the first time she had ever heard my name.  It’s interesting that in a college with seven hundred students it still took us two years to find each other.


I’m walking down this road
There seems no end in sight.
Everywhere I turn I find you on mind.
Nothing I can do will keep me here with you.
Things are moving so fast I can feel you slipping through.
Where you are now I have no clue.
Wish I could find the words to sit down and talk to you.

Sometimes it feels like I’m running in circles.
Things I see make no sense to me.
The man I was, the man I wish to be.
Is he gone, or is he me.

Every time I try, just try to make it through.
The words come out wrong, and I just walk away from you.
I run back to the place, the place I first kissed you.
Those were the good times, the times I spent with you.
I guess it time, time to say goodbye.
Just walk away, into the cold night.

Sometimes it feels like I’m running in circles.
Things I see make no sense to me.
The man I was, the man I wish to be.
Is he gone, or is he me.

So here we are two worlds apart.
Will I find another, or will I have this broken heart?
I guess she is through with me.
I have no words to say.
I tried to tell her I loved her, but she just walked away from me.
She just walked away from me.

So after twenty-four years I thought I should maybe finish the story.  A lot has happened in that time.  Some good, and some bad, but all have been worth it.  I hope you enjoy the second half:

Some times I feel like I’m running in circles.
Things I see, Make no sense to me.
The man I was, the man I wish to be.
Is he gone, or is he me?

There you were, Standing on the side.
I wanted to talk to you, I wanted to confide.
I wanted to bring you close and whisper in your ear.
You are the most beautiful girl, I have to break through this fear.
I touched you through my whisper, I held you for a time.
I knew right then and there you were mine for the rest of time.

Some times I feel like I’m running in circles.
Things I see, make no sense to me.
The man I was, the man I wish to be.
Is he gone, or is he me?

I’m standing right in front of you.
He says you are my wife.
It feel like nothing before.
It’s like I have found my sight.
I can’t wait to start my life with you.
I can’t wait to hold you near.
You are the love of my life.
I have nothing to ever fear.

Some times I feel like I’m running in circles.
Things I see make no sense to me.
The man I was, the man I wish to be.
Is he gone, or is he me?

I never saw your true beauty.
Until that first big night.
You were meant to be a mother.
OH, if I only knew bedtime would be such a fight.
Playgirls want to play, no matter what time.
I just had to hold on for the ride.
If nothing else we have always had a good time.

Sometimes I feel like I’m running in circles.
Things I see make no sense to me.
The man I was, the man I wished to be.
Is he gone, or is he me?

We are proof that love exists.
that love is all we need.
Tragedy will not slow us down.
someday we will all be set free.
I will always tell you I love you.
I will always make sure that you see.
I will never walk away from you.
I will be the man who you want me to be.
The man who I am is not gone.
The man you see in front of you,
………. is me.

Seven Days to Dance-A Novella

Seven Days to Dance

 

1

 

Breathe, just breathe.  That’s what I keep telling myself.  My throat feels constricted, I feel like my vision keeps narrowing.  The fluorescent lights seem to be burning my skin.  I can hear their buzz in the middle of my head.  I keep trying to will the pain and fear away.  Please stop this dream!  It’s like I’m watching outside myself.  I see a young woman sitting in a chair in a small doctor’s office with her hands over her eyes.  There is a doctor sitting across from her wringing his hands as if he doesn’t know what to say.  This can’t be happening to me.  The weight of the world has landed solely on my shoulders.  It is crushing me.  My fear is so heavy I can’t hold it up.   Who can I tell?  Who is going to care?  I am literally alone in this world.  My parents have both passed away.  I am an only child of two only children.  I have acquaintances but in the year that I have been here I haven’t really tried to get any close friends, I’ve been working too hard for that.  Breathe, catch my breath, oh my God, if I close my eyes hard enough they will stop my tears from coming.  I want to scream.  They are wrong.  They have the wrong person.  Just STOP, stop lying to me.  This can’t be real.  Is this your idea of a bad Joke?  No matter how hard I squeeze, my eyes start leaking.  I let go, I cannot fight it anymore.  I sob, I hold my breath.  I can’t catch my breath.  The walls of this small room are closing in on me.   “Why, out of all the people in the world, do I have cancer?”

“Sara, Sara come back to me here, you are going to be alright.  Settle down now, let’s talk about this.  Is there someone I can call for you?”

I hear myself say, “There is no one.”

I think I said it out loud.  I don’t know.  None of this is real.  It’s all a dream.   I have been really tired lately and must have fallen asleep during a movie and am dreaming about it now.  I hear someone from the movie talking.  They keep saying my name.  Who are they talking too?

“Sara, come on now let’s talk about this, everything is going to be ok.”

What in the hell is he talking about.  I’ve got Frickin cancer.  I’m under water; I can’t hear what he’s saying.  I’m swimming but can’t get to surface.  Breathe, I can’t catch my breath.  I am going to drown in my own tears. I sob, it hurts so badly. Why?  WHY? God dammit, WHY ME!  It hurts so bad I hold my breath.  I feel like I’m going to puke.  My body says, “You need to breathe,” I gasp in between sobs.  I feel warmth surround me.

“Sara, it’s me, Dr. Franklin.  Everything is going to be ok.  Just calm down.”

I have never felt this kind of sadness before.  I have never felt this kind of fear before.  It is like the world has stripped away all of its filters, all of its buffers.  It is pure sadness, pure pain.  I just want it to stop.  I want to be the person I was five minutes ago, naïve to such intimate feelings of life and death, fear, sadness, desperation and pain.  For the sake of God I’m only 28 years old.  Give me a break.  Dammit, this sucks.  I’m done being sad.  I’m pissed.  Who the hell does this guy think he is?  He probably has an online degree.  He doesn’t fricking know what he is talking about.  Son of a Bitch, he’s a bastard for telling me this kind of crap.  I am twenty-eight years old.  Cancer is what old people get.  I am visibly shaking now.  I can’t believe the audacity of this guy.  The buzz of the lights is so intense now that I feel it vibrating behind my eyes.

“Sara, settle down now, it’s going to be ok, talk to me, let’s work this out.

I finally look up from the palms of my hands and see the concern and kindness in his eyes and instinctively know that he is telling me the truth.  “How do you know its cancer? What Kind is it?  When am I going to die?”

“Slow down, we have a lot to talk about Sara.  Just take a minute and get yourself settled down.  Then I will answer your questions.”

I settle myself and make eye contact with him.  “So what is it?”

I can see he is visibly distraught.  He doesn’t want to talk about it about as much as I don’t want to hear it, but he does and he starts from the beginning.

“Ok Sara, if you remember about two months ago you came in to see me because you were having recurring pain in your left ankle, you assumed it was and old injury that just never healed correctly.  You are a ballet dancer in New York City so this is not an uncommon occurrence for someone of your talent and determined work ethic.  Over the last several months we have done the usual treatments for a chronic injury such as what we thought you had.  Nothing has been working so I ordered a CT scan of your ankle to see what the actual problem was.  We Did the CT last Tuesday.  I realize now that I probably should have started our conversation out with this history but I felt that you needed to know where all of this was heading.  I know that there is no way to prepare yourself for what you found out today.  I am sorry for being so blunt in the beginning.  From now on I think you will find that when you start to talk about life and death you don’t want it sugar coated and you definitely don’t want someone who will beat around the bush. The results of the CT showed nothing as far as an injury to the ankle area but the radiologist said that there was a moderate sized nodule in the ankle that is the most likely cause of the pain that you are experiencing.  He said that the only way to know for sure what it is, is to biopsy the nodule.  Last Thursday you had the biopsy.  I received the biopsy results yesterday.  Your diagnosis is Synovial Sarcoma.  The nodules usually start small and increase rapidly in size, which is why your pain seems to be increasing.  I know you have a million questions going on in your head, but frankly this is way out of my league.  I made you an appointment with an oncologist on Friday, which is tomorrow, and sent all of your results.”

“Am I going to die?”

“I don’t know Sara, I know that Synovial Sarcoma is fairly rare but it affects younger people usually before they turn thirty.  I am a general practitioner not an oncologist.  I know you have so many questions and I have so few answers.  I am truly sorry that you have to go through this.  I feel like I am kicking you out the door but where you need to be is at the cancer center.”

He gave me a quick hug and headed out the door.

He peeked back in and said, “Don’t forget to stop by the nurse and get your appointment for tomorrow.”

I will remember Thursday, June sixth for the rest of my life, whatever that means now.  At least it’s warm outside.  I walk out to the sidewalk and just start walking.  I don’t see or hear the traffic on the street.  The honking horns are like gnats that are buzzing around my head.  They are there but I don’t pay any attention to them.  There are so many people that it feels like I’m floating down a river and the water keeps brushing up against me.  Moving me in the direction it is going, funneling me down the tunnels that the tall buildings make.  I just let the current take me.  I just flow down the river not conscious of the rocks and boulders that gently push me back and forth.  I want to just blend in.  I want to be normal again.  Just be an average Jane doing average things.  What’s a person with cancer supposed to be doing anyway.  At first I keep my head down.  Lost in thoughts of why.  Wondering if everyone passing me by can see that I’m floundering, wondering if they can see my fear, if they can see my pain.  Do they feel sorry for me?  Do they even care?  Who am I but a Ballet dancer in New York City?  Sure my names in lights sometimes.  I am pretty good.  I’m not great by any means, better than average, but just a simple woman who had a dream and was willing to pay the price to realize it.  The newspaper guy likes to call me Indiana.  Partly because I came from Indiana, not generally a mecca for ballet dancers but I had a good teacher, she set me up pretty good so I could get into Julliard.  I worked hard, and stayed out of trouble.  Dancing is my life, all of it.  That’s all I do.  I practice, I perform, I eat, and I sleep, every day I dance.  And now I’m a ballet dancer with cancer.  What in the hell does that even mean?  I don’t know.  The other reason for calling me Indiana is my last name is Jones.  He thinks it is funny running around calling me Indiana Jones.  I don’t really like it.  To me it is like he made up a nice little porno name for the poor little girl who came to New York City to make a name for herself.  It really kind of pissed me off and made me work harder so one day I could rub it in his face.  It is starting to get dark.  I don’t even know where I am.  I have just been walking, lost in thoughts about my life, cancer, and my future.

I decide to look up and see where I am.  The city noise is deafening.  It’s like a blast wave that I have been ignoring for the last hour.  I smell the stench of civilization as it assaults my senses.  I see people everywhere and I am struck with the first thought that is not solely about me.  If I can be in so much pain, and have so much fear in me.  What are all of these people feeling?  It’s like a light switch went on in my brain, I am not the only person on the earth with problems.  It makes me wonder how long I have had my head in the sand.  I have been so determined to be the best that I can be that I have never looked up and seen what is out there.  I have never looked into someone else’s soul to see their pain.  I have never loved and lost anything.  Now I could die.  For the next hour I just walk and look into every soul that passes me.  Trying to figure out what are they feeling.  What are they sad about?  What are they happy about?  The river that I am in now is colored red.  I see eyes fill with anger, some with indifference.  I see eyes darting back and forth in fear.  Women holding purses close and men feinting courage that they do not possess.  I see the love of a mother for her child as she tries to keep him moving in the river.  I have been so selfish with my life.  Now I have cancer.  How much time do I have left?  I just want to cry.  Have I wasted my life?  I thought I was winning.  Maybe I have been losing the whole time and was just too stupid to know it.  I just want to go home.  I just want to go home and go to sleep.  I want to wake up and find that this has all been a very bad dream.  I am a dancer at the height of my career.  I am winning.  I hail a cab and head home.

I walk into my studio apartment and everything looks so different.  My ballet shoes hanging on the hook just seem like a distant memory of a better time.  I pass a mirror and see the reflection of someone who I once knew.  The silence that was always my comfort is now deafening.  I go to my small kitchen out of habit and open the refrigerator.  I haven’t eaten all day and should be hungry.  The emptiness that I feel is not in my stomach, but in my heart.  The leftover take out from last night doesn’t look appetizing at all.  I need to nourish my soul, but I can’t find anything to feed it.  I am lost in the surrounding of my own making.  What should feel like home and bring comfort only adds to the anxiety of what my life will be like tomorrow, or next year.  I feel like a shell that has everything that mattered ripped out.  I rush to get my clothes off and into my pajamas.  I just want to lie down, I just want to sleep.  I nestle into my bed and close my eyes hoping that when I wake up the cloudiness in my head will be gone.  Hoping that the sun will be shining and life will be back to normal.

I sleep a little bit and then wake up with a rush.  The quiet of the darkness is killing me.  I have so many questions with no answers. It seems like life is slipping away with no sound.  I am in a tunnel that goes nowhere.  A vacuum is sucking out all of the air.  I am gasping.  The air conditioning must be broke because I am drenched in sweat.  I tear off my pajamas because I can feel them burning my skin.  I run to the bathroom and splash water on my face to try to cool off.  Nothing I do has any effect.  I have a fever and no medicine will bring it down.  For the first time in my life I don’t see my future.  I see all the regrets of my past.  I see anger.  I see frustration.  I see despair.  I see my life balancing on the edge of a cliff that I can’t see the bottom.  I am panicking.  Just breathe, let the air in, and blow it out.  I can’t take it anymore.  I start to sob.  I try to hold it in but I can’t.  I won’t be this weak!  Just hold it in and it will go away.  I sob again.  I can’t hold it.  I let it go and cry.  I cry because I’m scared.  I cry because I’m angry.  I cry because I don’t know what else to do.  My heart is breaking for the life that I should have.  I cry until I have no more tears.  I am left numb.  A weakness that I have never felt comes over me.  For the first time in my life I feel that there is no hope.  No plan for my life.  No purpose.  I slowly fall asleep with nothing but a blanket filled with sorrow wrapped around me.

 

2

 

 

“Hi Sara, my name is Dr. Murphy, I am the one that Dr. Franklin referred you to.”

I have been sitting in this little room for thirty minutes.  If I hadn’t been looking at the clock every two minutes I would believe that I have been here for days.  Time has slowed down to a crawl.  I woke up at five-thirty and could not go back to sleep.  They sun is shining but that doesn’t seem to brighten the cloud that seems to have settled over my soul.  I showered but could not scrub hard enough to get the stink of a diagnosis of cancer off of my conscience.  I tried to eat some toast but just could not choke down my anxiety of what I would find out today.  I am on the edge of my seat and my patients have grown weary.  I need a plan.

“Ok Sara, I believe Dr. Franklin told you about the biopsy result and that the finding was synovial sarcoma.  After reading Dr. Franklin’s notes I see that he really didn’t know much about this and referred you directly to me.  So let’s start from the beginning and what synovial sarcoma actually is.  It is a soft tissue sarcoma that generally affects younger people, usually before they turn thirty.  It is relatively rare and survival rates have improved in the past 20 years.  Survival rates are also affected by where the tumor is located.  Yours is in your lower leg/ ankle areas.  This is a good thing as it is away from any organs.  Do you have any questions so far?”

I feel like I’m watching this conversation from the outside.  I feel detached from reality and don’t really understand a word he is saying.  I must have missed that day in school where they taught you everything you needed to know about cancer.  All I hear is gibberish.  I can’t really focus on what he is saying.

I just nod my head and say, “no, but what can we do about it?”

I really don’t care that much about what it is.  I want to know how to get it out of my body.  I keep having the sensation that something really nasty is slithering around in my leg.  I just want it out.  I want it gone.  I keep picturing a huge leech slithering around eating me from the inside out.  The dull ache that I have in my foot just seems to pulse with each bite that it takes.

“What are my options?”

“Most generally the first option is surgery to remove the tumor with a wide enough margin around it to insure that they removed it all and any lymph nodes that it might have affected.  There are mixed feeling on the effectiveness of chemotherapy on a tumor like this and it is generally not done at this stage but can be used if a metastases is found at a later time.  Radiation can be used either before or after surgery to either shrink the tumor itself or kill anything that is left behind after.  Most generally we can surgically remove the tumor and do nothing else.  There is a chance that it will metastasize at some point but it usually takes a while for this to happen.  On average you will have a good six to seven years before that becomes a worry.  You will have a checkup every six months to make sure that it has not come back.    My recommendation is for you to have surgery as soon as possible.  Do you have any questions about treatment?”

It feels like a whirlwind has blown up in my brain.  All I really heard was surgery.  Six or seven years, then what?  What in the hell is a metastases whatever?

I can’t seem to focus my thoughts so I say, “What is the surgery like?”

“For the most part I have been giving you good news, now comes the bad.  I had our surgeon take a look at your scans and give us his opinion of what would need to happen in your case.  His feeling is that with the size and placement of your tumor his options are somewhat limited.  He doesn’t feel that he can create a sizeable enough margin around it to feel reasonable comfortable with just taking it out.  His recommendation is that you have a transtibial amputation, meaning removal of your left leg below the knee.  I know this is a shock for you and has to be traumatic, but this is something we have to talk about and get going on so that we can get you out of the woods, so to speak, for the risk of metastases.  Most of the time it moves to the lungs and we would like to keep that from happening.”

I feel like I have been kicked in the gut.  I feel the bile start coming up my throat.  I feel as if I’m going to puke.  I haven’t heard a word he has said after the word amputation.  The whirlwind erupts into a fury and all I hear is the blood rushing through my ears.  My heartbeat is pounding in my temples; my head is about ready to explode.   Fear races through me.  I reflexively look down at my leg and try to imagine it being gone.  I see days of a bloody stump flashing through my conscience.  What in the hell is going on?  My tears start to well up again.  Why?  My sadness is wrenching my gut into a thousand knots as I try to comprehend my life with one leg.  Waves of nausea beat me down on my knees.  My head feels lite and the world swerves sideways, light is dancing off of the back of my eyeballs but cannot focus.  I come to the realization that my life as I know it is gone.

“Sara I know this is a lot to take in at one time.  Do you have any questions right now?”

I try to pull myself together.  I try to put two thoughts in order to try to answer him.  I finally find my voice and ask, “what if I do nothing?”

“Well Sara if you really want to live awhile longer that is not an option.  If you do nothing then the cancer will grow and more than likely get into you lymph system.  Once it gets in that system then it can go anywhere in the body.  Like I was saying before most of the time it goes to the lungs.  Once it is there and you go on untreated it won’t take long for it to take over.  I know this is not ideal for you but it really is your only option.  I have tentatively scheduled you for surgery on Monday the sixteenth.  That’s in ten days.”

I don’t know what to say or do.  I just slowly nod my head.

“Is that a conformation that you want to go ahead with the surgery?”

I get out a weak, “yes” as I fight back the intense need to throw up while trying not to cry.

“Ok, my office will be in contact with you about the particulars of the surgery.  Sara, I know this is hard.  Take the next ten days and try to understand why this may not be what you want, but in the long run it is what you need to keep on going.  Someday, something is going to happen that you will be very thankful for and you will realize that if you wouldn’t have had this surgery it never would have happened.  Your life is not worth keeping your leg.  Someday you will understand that this is a small sacrifice compared to the greatness of the things that lie ahead. Get some rest I will see you in ten days.”

He is gone.  I just sit there in the chair.  I don’t know what to do.  I have no agenda now.  I don’t know where I’m going literally and figuratively.  I have never, not had a direction to go, never, not had a place I needed or wanted to be.  Life feels blurry.  I can’t see past my nose and it is scaring the hell out of me.  My training takes over and I know that I must keep moving.  Usually that meant moving forward.  I’m not so sure how that will happen now, so I just take comfort in the motion.  I am doing something besides trying to comprehend what my life is now, who I am now.  What I am now.  I need to get away from this room.  I need to get away from this hospital.  Maybe if I move fast enough I can run away from all that has happened in the last two days.  I get outside moving at a fast walk.  I can’t or won’t stop my momentum and just have to run.   Down the street, to the next block, three blocks.  I can’t stop, if I slow down the reality of my life will catch up to me and I will drown in sorrow.  I come to a park.  It is pretty much deserted.  I run faster.  I sprint as fast as I can.  My lungs feel like they are going to burst, I have to stop.  I slow down and try to catch my breath but I can’t.  I sit down on a bench.  The sorrow catches up and I start to sob.  I let loose with everything that I have been holding in for the last few hours.  My shoulders heave up and down.  I have to get this pain out.  I have to let this fear drain away so that I can function.  I am blinded by everything that I don’t know about what my life was and is now.  My stomach contracts and I let out a moan.  It gets tighter and tighter.  It spasms in between heavy sobs and I grab my stomach and hunch over.  This is tearing me up from the inside out.  I can’t get any relief.  I let out another moan as I feel like I am going to be ripped in half.  This has to stop.  I have to get control.   I have to find something that makes senses in all of this madness.  The pain starts to subside and I begin to gain control.  I begin to feel the emptiness that this eruption of emotion has taken out of me.  The numbness returns.  The cloudiness in my brain returns.  I sit there blindly staring at nothing.  Not thinking of anything.  I am not living, not dead, just sitting on a bench in a park, existing.

 

3

 

“Hello there young lady, how are you today.”

I look up and am surprised to see an older man sitting next to me.  I never even heard him sit down.  After looking closer calling him older was an understatement.  He was pretty short but it was hard to tell because he was so hunched over.  There were so many wrinkle lines on his face it was like a road map of New York City.  I am so startled that I don’t know what so say.  My mind is not functioning yet and I am lost in thought about nothing.  He is dressed in nice clothes with a nice old man hat pulled down close.  Instinctively I could feel the kindness and calmness radiate from him.

“I’m sorry, what did you say,” I ask.

He smiles kindly as says, “How are you doing today?”

My brain is still fuzzy and I don’t really think about what I am saying and reply, “I don’t know.”

I don’t usually put my life or my emotion out there for people to see.  My usual response would be, “I’m doing fine.”  It wouldn’t matter what was going on, good or bad, that is what I would say.  I feel really vulnerable.  I feel like I’ve opened a gate that I cannot close now.  I just hope he doesn’t ask any more questions and moves on.  I must look horrendous. I’m sure he can see right through me.  I just let loose with a torrent of pent up emotion. I’m sure my eyes are a mess.

“Well if you ask me it is a beautiful day.” He says.  “Look around, the sun is shining, the birds are chirping.  I’m alive, that is all that really matters.”

I’ve been holed up inside my head for most of the day so far.  Not looking around, or at least not seeing what is around me.  He is right; it is a beautiful day out.  It is fairly cool for a June morning.  The heat hasn’t set in yet.  I feel the stickiness of my tears on my cheeks and feel like he is waiting for an explanation.  I don’t really have one.  I feel empty.  I really have nothing to say.  I am tired of contemplating my options; I’m tired of trying to figure out my life.  I am just tired.  What options do I have?  The options that I want are not on the table.  The options that I need are unimaginable.  I am so confused.  The more I think about it the sadder I become.  I just want to stop thinking about it and just walk away like it never happened.  The bad hair day seems so trivial now.  A blister on my foot seems like a minor inconvenience.  I feel a single tear leak out and roll down my cheek.  I am so tired of being sad.  The world seems so heavy.  I feel like I’m sagging, being pushed into the ground.  I am too tired to fight it, I just want to let go and let it crush me.  I close my eyes to surrender my will and then feel warmth on my hand.  It delays my fall for a fraction of a second, a pause in my decent into madness.  I start to fall again, and feel a squeeze.  It is warm; it is calling to me to come back.  The warmth is welcoming.  The pressure feels like it is wrapping around my soul and calling me back.  I just want to hold onto it.  I want to let it take all of the pain away.  I want it to wash this sadness from me and hold my soul tight until there is nothing left.  I am called to it, I feel myself leaning toward it.  I just want to fall in the pool and let it fill me with the light of its warmth.  I let the warmth hold me.  With each tear that leaks out the warmth takes its place.  I don’t move for a long time, I just stay in the warmth, let it refresh my heart, let my soul be filled.  My pain drains away and I am left with feelings of contentment.  Content to stay in this warmth and never leave it.

I slowly start to open my eyes and have the sensation of something rubbing my back.  It must be a tree branch swaying in the wind as I sit here in the sun.  I open my eyes a little further and see a knurled branch that seems to have become tangled up in my hand.  It is squeezing so gently.  I feel the warmth on my side.  It seems to be breathing with every wisp of the wind.  I open my eyes a little more and see a nice pair of shoe sitting in front of me.  They are attached to a small pair of legs.  Oh my god, the old man.  I take a deep breath and begin to sit up, embarrassment flooding my senses.  What have I done?  I sit up and cannot make eye contact with him.  How could I be this weak?

My thoughts are interrupted when I hear him say. “Sadness is a bitter pill to swallow if we let it hold our hands and our heart in chains only our mind can break.  Hold fast my young friend, for we cannot break the bonds of fear by running away from it, I can only imagine what has happened in your life, but this I know to be true.  Stand up my dear friend and face the wind that is blowing against you.  You will find that you are much stronger than you ever thought you were.”

I look up at him slowly and look into his eyes and see a kindness so strong the only way I can describe it is love.  Love for everyone and everything in the world.  I feel a gentle squeeze on my hand and realize that he is still holding it.

My instinct says to pull away, but before I can he squeezes a little bit harder and says. “You are not alone on your journey.  When your strength is waning someone will be along to carry your burden for a while.  It has been my pleasure to shoulder it for a while today.”

I have been content in my loneliness for so long I did not realize how much I missed this feeling.  I am engulfed with emotions that I haven’t felt in a long time.  Tears well up again only this time it is not sadness.  I am full of emotion because this man, this stranger has done one thing that I cannot do myself.  He cared, and I am grateful.

“My dear”, he said, “I am an old man and so I must be moving on or I’m afraid that I may not be able to get up and just be planted here.  I do want to give you a piece of advice in parting though.  Sometimes in life we need to take a pause.  We need to look at our life and see where we are going and where we have been.  We need to see what was important and what is important now.  We need to take a step back from life and for a brief moment see who we really are.  My advice is to take a journey.  It may just be down the street or around the world, but take it.  Find yourself in whatever is around you.  Find your happiness.  Finding it is up to you, but don’t be afraid to get help along the way.  You never know, someone might be on their own journey and it might be your turn to help them.  Let down your walls and find your hope.  Find your dreams where you never thought they might be hiding.  Life is not always what we want it to be.  But life is life, and it is not forever.  Make the most of it.”

He slowly gets up and pulls me up with him.  He gives me the best hug I have had in a long time.  It has so much caring wrapped up in it.  I feel that his love has enveloped me.  My tension is drained away, my fear is gone.  I still feel a tinge of sadness, but it is not for me.  It is that he is walking away and I am eternally grateful for his kindness.

 

4

 

I mosey around the park for a while.  I have never been here before.  For the moment, my mind is clear and I am seeing clearly.  It seems that hope has a way of opening our eyes to the vibrancy that life has to offer.  I hear the birds.  I see the most beautiful colors on the flowers, butterflies softly flapping their large wings.  I contemplate what I have been missing the last several years; I have been so focused on my dancing.  It makes me hungry to see what is out there.  In this moment of peace I realize that I am really tired.  I have not slept very well for a few days.  I get to the street and hail a cab.

I walk in the door and toss my keys.  I feel guilty that I am putting on my pajamas at three in the afternoon.  That is something I never would have done two days ago.  I would still be at the studio working on this and that, trying to be perfect for my next performance.  I linger as I take off my shirt.  It still smells of my stranger.  In a strange way it gives me comfort that he is still with me.  He is still holding me up when I feel myself falling.  I crawl into bed and slowly fall off to sleep still holding my shirt.  Holding on to the hope that the smell has given me, holding on to the thought that I still have a future, it may not be what I had planned, but it is still something.  Something to look forward too.

 

5

 

I slowly come awake.  I feel the warmth of the sun coming through my window.  I still have my shirt from yesterday in my hands, holding it close. I smell it again, I don’t know why but it calms me.  I remember that there is hope.  I remember that there is love in this world.  I lay there for a while thinking about what I should do today.  It’s Saturday.  If it was last Saturday I would have been up hours ago, ate a light breakfast and done some yoga to get things going.  I would already be at the studio putting the finishing touches on my performance for Sunday night.  It’s ten in the morning now.  I have been out for around nineteen hours.  I don’t think I have ever slept that long.  It felt really good though.  I feel refreshed, ready to do something today.  Actually I’m starving.  I haven’t eaten anything since Thursday.  I crawl out of bed and head for the kitchen.  Coffee sounds really good, and it smells even better.  I am trying not to think about cancer.  So far it’s working.  I just want to be happy today.  No pressure, no fear.  I want today to be simple.  Actually, I just want to dance.  I get dressed and grab my things and head to the studio.  I want to feel the air as it moves across my skin.  I want to feel the passion of the music as it penetrates my soul and we become one.  I want to glide across the floor and move with grace and elegance.  I want to be free.  Dancing has always been my place to forget about everything else.  It is where my mind shuts off and I fall into a world with no hurt, no pain, and no sadness.  It is where my passion comes out.  It’s where I feel, it’s where I breathe.  It is where I have been living my life.  This thought stays with me as I go through my dance.  As the music comes to an end I sit down facing the mirror and look at myself.  No, I look into myself.  I find that I have been living my life on this small dance floor for a while now.  I realize that if I walk out of these doors I cease to exist.  If I never left these walls no one would ever know.  I have been living only here.  I leave, but outside I am not living, only existing.  I only know it is raining because I am getting wet.  I have lost so much time hiding on this floor.

I think back to what my old friend said.  “Sometimes in life we need to take a pause.”  “My advice is to take a journey.” There are so many things I had planned on doing after my career was over.  I would never have dreamed that I would have to do them on one leg.  Maybe I need to put my life on pause.  Maybe I need to do somethings right now that I always wanted to do.  I have about fifty thousand in the bank.  If you never do anything besides work it kind of adds up over the years.  Maybe I need to take a journey.  Maybe I need to find the person that I have lost along the way.  Maybe I need to find some passion in my life, not live for my passion.  I don’t know but I do need to do something, I can’t sit around here and think about all of the what if’s and I won’t be able to’s.  I don’t have a performance tomorrow.  It is an off weekend.  Where would I go?  What would I do?  I have always loved to ballet dance but I have never danced in any other way, unless you count the awkwardness of a junior high dance or two.  I really haven’t done anything else.  I have watched other people doing all kinds of dances.  Hip hop, salsa, swing, country and western, they all look fun but I have never done any of them.  What if I could do them all?  Where could I do them all?  Do I have enough time?  Can I just leave? I am getting kind of excited thinking about it.  I haven’t been out of my two square miles in a couple of years.  I need a new beginning.  I need to talk to my producer.  I jump up and head for his office.

 

6

 

 

As I walk down the long hall I am getting kind of nervous.  My producer can be a nasty little man if the conditions are just right.  I know that part of it is that he is under enormous pressure just like the rest of us.  We are paid to perform and he is paid to make sure we perform.  I always try to be prepared, so I have not been on the beating end of the stick really, but, holy cow I have seen him rip some people up one side and down the other.  I’m not sure why I’m really nervous.  What is he going to say?  It’s not like he wants a one-legged ballerina hopping around on his floor.  I think I am more nervous about actually telling someone what is going on.  If I can keep my mind off of it then I can pretend it doesn’t exist.  Part of me doesn’t want anyone to know, but part of me just wants to get it off my chest.  Only three people know what’s going on and I don’t count.  As I approach his office I hear him talking.  All I catch is, “now get out of here and get you shit together.”

This ought to be fun.  I slow down a little and wait as Jill, another dancer in the show, storms out.  I’m pretty sure there were tears in her eyes but she flew past so fast I couldn’t tell for sure.  I take a deep breath and give a light tap on the door.

“What.” Is all I get as I slowly go around the corner of the door.

I say, “Hi Connor, it seems you are having a rough day.”

He gives me a smirk and says, “What can I help you with Ms. Jones.  I have a lot going on today I hope this is important.”

He has a pretty nasty attitude today and I’m half tempted to say I quit and just walk out the door.  I calm myself though because I really want to have a final dance next Sunday.

I reply, “Sorry to bother you Conner.  I have some personal issues that we need to discuss if that is ok with you.”

“Well spit them out, I don’t have all day”, he says.

Ok, if he wants me to just spit them out that’s what I will do.  “I am leaving tomorrow and won’t be back until next Saturday night, and Sunday will be my final performance.”

I’m not sure of the reaction I was expecting.  At this point I’m not even sure I cared that much.  All I know is that eight days from now none of this is going to matter.  He just sits there staring at me.  The tips of his ears seem to start glowing red after a while.  I think his fire is heating up and he is going to explode.

Finally he says, “Shut the door please.”

This takes me off guard somewhat.  Usually he keeps the door wide open so that anyone within a block can hear him yelling.  I’m so confused I make the mistake of asking him to repeat himself.

“PLEASE, shut the door,” he says again.

I scurry over and shut it.  This is definitely not going how I pictured this going, but I have never quit everything at once in my life before so I guess I’m in new territory any way.

He starts off and says.  “Ms. Jones I think you understand that you signed a contract for your employment.  This season is only a quarter done.  I must inform you that if you quit now you will be liable for buying out the rest of your contract.  If my memory serves me correct that would be a fairly sizable payment since you are our best and highest paid dancer.  As far as this week is concerned if you don’t feel the need to be here rehearsing then I somehow doubt you really feel the need to perform on Sunday.  This really doesn’t surprise me.  I have seen it before.  Small town girl gets home sick, wants her first love back.  She then goes crying back to Momma because it got too hard.  To be completely honest Sara, I never thought I would have these problems with you.  It’s really starting to get me fired up because I feel you are really letting me down.  I believed in you, Sara.  Why, why are you willing to throw it all away?  What could possibly make you want to leave?”

I thought I was in a better place today, but having this meeting has made everything real.  It’s one thing to think about your life changing.  It is something else entirely to be having it play out right in front of you.  I feel my tears start to well up a little and I try to fight them off.  The reality of today starts to hit me very hard.  I am sitting here quitting the one thing in my life that I have worked so hard for, the one thing that I have sacrificed so much for.  How can I just give up and throw it all away.  I feel one tear give way and roll down my cheek and just have to get it out.

“I have no choice,” I say.

He huffs a little and says, “You have no choice, Sara we all have a choice.  What, is your boyfriend giving you an ultimatum?  What could possibly make you think that the choice to quit is the right one?”

I hate my life right now.  I hate myself.  Cancer be damned, I can’t just quit.  I have to find some way to keep dancing.  I have to.  I can’t let go.  I can’t just leave.  What was I thinking, I am a dancer, and I have to dance.  Oh my god, I can’t dance.  It’s over.  Eight days, that’s all I have left.

Another tear falls and I say, “I have cancer.”

That’s all I can get out.  Everything else is stuck inside and won’t come out.  I hold my breath to keep everything in.  I look up at him and see confusion on his face.  My ears are ringing because I am trying so hard to keep it all in.

I read his lips; he says “you have what?”

Another tear falls and I get out, “cancer.”

His face falls, disbelief covers his demeanor.  “Sara, are you sure?  You look fine.  What is all this really about?”

Another tear falls but I feel so much better.  I have released the demon that has held me captive for two days.  Someone else knows.  I never thought that telling someone would be such a relief.  I never thought in my wildest dreams that I would be telling Connor my innermost secrets but I am so glad that I did.  A burden has been lifted.  Someone knows my pain.  Whether he cares or not doesn’t matter.  By default he gets to bear my burden with me.  I am not alone.  I take a deep breath and gather myself.

“I have synovial sarcoma in my left leg near my ankle.  I must have surgery the Monday after next.”

He comes around the desk and sits next to me and puts a hand on my shoulder.  “How long will you be out, when can you come back?”

“I won’t be back, Conner.  They are going to take my left leg below the knee.”

I see him sag.  His shoulders roll forward.  “I am so sorry, Sara, forgive me for all of the things I said.  My god I am so sorry.”

I can see that his eyes are beginning to shine.  He is truly sorry for me.  His sadness is genuine.  I have mixed emotions about this.  I am sad that I have made him sad.  I am mad that he is feeling sorry for me.  I have always prided myself on being strong and not relying on anyone.  I didn’t come here looking for sympathy.  Maybe some understanding, but not sympathy.

I look him in the eyes and he says, “what can I do for you, how can I help?”

“I don’t know what you can do for me except let me do what I ask.  I need this week off but I have to perform my last performance.  I just have to.  I need to get away from everything for a while.  I have to do something to take my mind off of everything that is happening.  I can’t just sit here.  I will go crazy.”

He sits in thought for a few minutes.  “Ok, you have your week, but I need you to be ready for your performance that Sunday night.  If it is going to be your last then it is going to be your biggest and best.  I am going to get out a press release that it will be your final.  I will have everyone here that is anyone.  Sara, I am going to make it the best night of your life.”

He said the last sentence with such tenderness of emotion.  I shed one more tear.

“Thank you Conner, I know we have never been close, but what you are doing means so much to me.  The last two days have been hell on earth for me.  I am glad I am not alone.”

I grab his hand and give it a squeeze.  He pulls me close and gives me another wonderful heartfelt hug like I got yesterday.  I relish in the moment for a while.  I never thought that I would need other people so much.  If nothing else this is teaching me that our condition, our human condition is made all the better if we let people in and don’t hold them away.  I get up to leave and he stands with me.  He grabs my hand again and holds it tenderly.

He says, “Thank you Sara for your wonderful work.  I will never forget you.”

He turns away with a tear on his cheek and I walk out of the door.

7

 

I feel a sense of relief as I walk out the door.  It felt like I at least made some progress today.  I am trying really hard not to think about what I just did.  If I think too hard on things it scares the hell out of me.  Officially I’m not retired, I have one more night, but actually saying the words and making the decision have been really tough.  In eight days I will officially be unemployed.  I have no work history, nothing to put on a resume that could make me employable.  Oh, and by the way, I only have one leg.  That is way scary for me so I’m just going to ignore it for a while.  I’m beginning to realize that I can’t process everything at once.  I seem to be putting different things in different boxes.  I pull one box out and try to figure it out.  Then when that is resolved, or I’ve had enough of it, I put it away and take out another one.  I figure that there are several that I just need to put into storage for at least a week.  I really want this week to be special.  I want it to mean something.  I am at a crossroads, a new beginning.  I really want to find out who I am now.  The box I really need to focus on right now is what I’m going to do for the next few days.  Where do I want to go, what do I want to do.  I know I want to dance; I want my last hurrah to be special.  I want to have fun and learn some new things.  I want to meet new people and see what I have been missing for so many years.  I don’t want this trip to be about cancer or about the loss of my leg.  I want it to be about awakening, maybe a little redemption for having my head in the sand for so long.  I want to learn to live my life again off of a dance floor.  In my mind it is almost scandalous to think about.  It is like cheating on my passion.  I feel like I’m breaking all of the rules I set for myself because I wanted to be the best dancer that I could possibly be.  For me it’s hard because for so many years that is all I have been focused on.  Dancing is who I am, it is my Identity.  In a few days that identity will be gone.  I try not to think about that part and focus on this being an opportunity to become whatever I want to be.  I have a blank slate.  I can be whatever I want to be.  Do whatever I want to do.

I can’t get some things completely out of my mind though.  What is the first day after surgery going to be like?  Every day for a long time I have got out of bed with the expectation of putting on my ballet shoes and dancing.  In a week what is going to be my expectation.  I’m sure for the first six months it will be just trying to figure out how to do things with one leg.  How do you get up and go to the bathroom on one leg.  I can just imagine myself waking up in the middle of the night to go, still be half asleep and hop right out of bed like normal.  When I fall on my face do I just roll over and chuckle to myself and say, whoops forgot I only have one leg.  Ahh, I don’t know, I’ve got to think of something else.  I finally get to my apartment and go inside.  I need to buy a plane ticket.  I sit down at my laptop and just stare at it for a few minutes.  I need to put some boxes in my head away and focus on what‘s important right now.  I close my eyes and just file things away for a while.  I open my eyes to the world that is open to me on my computer screen and say out loud to myself, “Ok Sara, here we go, seven days to dance.”

March 2017 Update for Tammy-The Will to Compete

Kansas City

Hello from Kansas City.  We finally made it.  I am sitting in the waiting room of a surgical center while Tammy is back finally getting the surgery on her eye.  It has been a long road to get here but hopefully in about another hour we will finally have some answers to the mystery bumps that are around her right eye.

This surgery was supposed to be on February 20th in Wichita.  A few days before the surgery the doctor called and said that there was another lesion a little deeper and he was not comfortable doing the surgery.  He did give us another lead to a opthomoligist in Kansas City and so here we are three weeks later.  Hopefully by the time I get done with this I will have some information for you as to what is really going on up there.

Many of you have probably heard or were wondering about Tammy being in the

One of our friends photo shopped Tammy in for fun.

hospital this past weekend.  We received lots of messages asking why Tammy was not at Kylee’s signing for Bethany.  Last week turned into a burger for her.  The week before she had finally got through her steroid taper and was looking forward to being off of them for a while.  In the mean time she had upped her dose of stivarga(chemo).  She was having quite a few side affects after they bumped up the dose and last week it seemed that she was getting weaker by the day.  The last straw was Friday morning.  She was supposed to have an MRI and a follow-up with her brain surgeon at nine-thirty.  I called to make sure she was ready to go for her mom and dad and she said that she had cancelled the appointments.  She said that she didn’t think she had enough energy to do those and get to Kylee’s signing.  That was ok with me because I knew she was tired.  The tipping point for me was when I called to make sure that they were ready to leave for the signing and she said she could not do it.  She didn’t have enough strength to get up and get there.  As soon as she hung up I called the doctor’s office and told them that we had to do something.  Things were just not right.  We got through the signing.  Tammy did get to watch the whole thing via Skype.  Thanks Jeff for the play by-play.

It was decided that the best course of action was to head to the emergency room and hopefully get her admitted.  Our ultimate goal was to get her strong enough for the surgery today.  Long story short, her cortisol levels were very low again.  She was dehydrated and had some kind of infection somewhere that was going on.  So IV was started, steroids started, and stronger antibiotic started.  It was amazing, by the hour she started to perk up.  She just kept getting better and better over the course of two days.  The comeback kid had done it again.  She is still weak, but there is no comparison.  She came home Sunday to rest up for the big trip to KC and here we are.

Many of you have followed, played  with, coached, been coached by, taught by or watched Tammy through-out her life.  Even if you have just played cards (Chad Calahan) against Tammy you know that she has a very strong will to compete.  It goes even beyond competing.  Tammy wants to win.  If she has taught or coached you at some point you know the intensity that she possesses.  She has a singular focus to do the things that need to be done to win.  She expects it out of herself, and if you are part of her team, she expects it out of you also.  Tammy is going to beat this one way or another because she doesn’t know how to lose.  She is the comeback kid because she believes in it with a passion.  She will not give up.  If you are a part of her team, she will never give up on you.  Never count her out, because with will and passion all things are possible.

I just met with Dr.  Got both lesions out.  We will know pathology hopefully by Friday.  Thank you for all of the support.  In the hospital Tammy had a few surprise visitors.  a former student and then a friend that came all the way from Seattle.  Thank you both for taking the time to come see her.  We love you all.

Perfect-Ed Sheeran

 

I found a love for me
Darling just dive right in, and follow my lead
Well I found a girl, beautiful and sweet
I never knew you were the someone waiting for me
Cause we were just kids when we fell in love
Not knowing what it was, I will not give you up this time
But darling just kiss me slow, your heart is all I own
And in your eyes you’re holding mine

Baby, I’m dancing in the dark, with you between my arms
Barefoot on the grass, listening to our favorite song
When you said you looked a mess, I whispered underneath my breath
But you heard it, darling you look perfect tonight

Well I found a woman, stronger than anyone I know and
She shares my dreams, I hope that someday I’ll share her home
I found a love, to carry more than just my secrets
To carry love, to carry children of our own
We are still kids, but we’re so in love, fighting against all odds
I know  we’ll be alright this time
Darling just hold my hand, be my girl, I’ll be your man
I see my future in your eyes

Baby, I’m dancing in the dark, with you between my arms
Barefoot on the grass, listening to our favorite song
When I saw you in that dress, looking so beautiful
I don’t deserve this, darling you look perfect tonight

Baby, I’m dancing in the dark, with you between my arms
Barefoot on the grass, listening to our favorite song
I have faith in what I see
Now I know I have met an angel in person
And she looks perfect,  I don’t deserve this
You look perfect tonight

by Ed Sheeran