Ha/lf

I wander the the half light of the dawn and the twilight as the sun sets.  Lost between the world of light and a world of darkness.  Lost between what is righteous and that which is indignant.   Lost between my will to never look behind me and the pull of what I fear at my back.  I choose to look toward the light and ignore the darkness, but by choosing I mark myself as one who reflects light, but who must soak up the darkness.

If only I could chase the light all the way around, but it is not so.  By day I follow it as it arcs across the sky reflecting it as I go.  Shining light into the shadows.  As the light fades I gaze until the last drop has gone.  Holding my weariness at bay, but knowing that as my reflection dims so shall our strength.  By night I wait for the light to return.  Lost as the darkness surround me.  Lost to what my mind knows is false but my heart can not hold back.  My fear catches me from behind and I slowly fall into the depths of my sadness.  Slowly I wither,  slowly I fall, slowly I decay  only to be reborn as the half light of dawn returns.  I am drawn to the first drops as it ascends higher and higher.  I gather and hold  it.  I fill my mind with warmth and heal my soul as I start to follow the light.  Reflecting once again.

I Can Give you Flowers

Thank you Lauren Quinn Flower Boutique for the beautiful flowers every week.
Thank you Lauren Quinn Flower Boutique for the beautiful flowers every week.

There seems to be a whole lot I can not do for you right now.  I can’t make it all better.  I can’t stand in front of your fear.  I can’t take the weariness from you.  I can’t carry your sorrow.  I can’t always be there to catch all of your tears, but I can give you flowers.

For the last twenty years I never was much of a flower guy.  It was just money I didn’t think I should spend.  They just wither and eventually get tossed.  Just another way of throwing money away.  Sorry, that was the rational me.  I have now come to realize that being rational in an emotional world may be best for some.  I now realize that it is not the best for me.  I now know that there is something far deeper than just something to look at.

The stem is the foundation of us.  The sturdy skeleton that holds us up.  It brings us nourishment and lets us grow.  It holds us up when the wind wants to knock us down, and when times get really tough it lets us bend without breaking.

The leaves gather the light around us.  They nourish our souls.

The flower is our beauty.  It is what everyone sees, but that doesn’t really matter to us.  It is the beauty that we see in each other that is the most important.  It is the vibrance of our lives and the softness or our hearts.  It is our souls molded together into something beautiful, something exquisite just for us.

I give you flowers every week not because it is the most rational thing to do.  I give you flowers because I know that when they show up you know that I am thinking about you.  You know that I love you and that no matter what happens or what we are going through you are the most important thing to me.  I can’t give you a lot of things that you need right now, but I can give you flowers and I love you.

 

September 2016 Update for Tammy-Finally!!

Well here we are about forty-five days after my last post.  I would love to say that things have been moving along smoothly, but they really haven’t.  We were hoping to transition Tammy into a clinical trial very quickly, but with MD Anderson not having anything in-house we got a great big dose of the clinical trial lifestyle that if you are not a part of it, I would not recommend it.  I now understand the frustration that many of our friends with cancer go through on a daily basis.  We have been pretty lucky up to this point and everything was done in Salina or in Houston.  No records had to be sent and everything was in place.

I think part of the problem is we are used to excellent health care.  We are so fortunate in this country.  If something is wrong we go to the doctor and they fix it.  In our case we are at the very edge of what can be fixed.  Some how we have jumped out of standard medicine and into exploratory medicine.  I’ve mentioned before that most answers for my questions begin with “well,” and end with “I don’t really know.”  Well, now the answers still begin with “well,” and end with “I don’t know but lets give it a try.”  We have made so many leaps in cancer research but the experts still do not know much about it.  Most of the doctors we see are not experts in cancer.  They are experts in cancer treatment.  They know what works and what doesn’t.  That’s about it.  It’s not their fault.  That’s just the way it is, we simply do not know.

Last time we talked we were going to try to get Tammy into a trial in Memphis.  It looked like a really good fit.  Memphis is about the same distance as Houston.  Lets do it.  We made all of the calls and got things going, but in the screening process something in Tammy history or cancer kicked her out.  Strike one.

Next on the list was a trial in Dallas.  It looked very promising.  I made all of the phone calls and had records sent and was screened.  Get a call back.  Tammy is an excellent candidate, but you do know this is a randomized double-blind study.  Ahhhhhh.  Placebos are in effect and you have a fifty-fifty chance of not getting anything.  So you’re telling me that we could spend all of this time and money for two months and have the possibility of not getting anything.  Yep.  We decided this was not going to work for us.  It was to big of risk.  Strike two.

Side note-  I have the feeling in exploratory medicine that the patient is second to pure science.  I get it, they must have the science to get the drug approved by the FDA.  So shame on the goons at the FDA.  I’m pretty sure that there are probably ten thousand people with colon cancer that are not on that particular drug.  Pick a hundred and use them for your baseline.  It’s not pure but who cares.  In my non perfect brain its’s pretty simple.  Something works or it doesn’t.  You don’t have to jack around with people’s lives to prove it.

So on to Omaha.  Not the best trial that we found but it’s something.  Nope sorry its suspended.  Strike three.

So that brings us to St. Louis.  After many phone calls and lengthy discussions about the last five years of our life we finally have an appointment for this coming Monday.  She will hopefully do all of the preliminary testing Monday afternoon and finish up on Tuesday.  Hopefully, she will start the trial the following week.  We are not exactly sure what the drug actually is.  It is in the immunotherapy area and she will have to be in St. Louis every two weeks for an infusion.  Hopefully we will find out more next week.

We are excited to get something going and I’m pretty sure I was getting to be very impatient on the phone talking to people.  These last couple of weeks Tammy and I have even been more scatter brained than usual.  Some of you have been on the end of our craziness and I am sorry for that.  I wish I had some great wisdom to give you on this  post but I will just leave you with this.  Sometimes you just have to tie your hand down as tight as you can.  Dig in your spurs and hold on for the ride of you life.

Thank you for all of your support.  We love you all!!!

The Give-A-Way Man

It’s funny how we tend to put life into little categories.  I suppose it’s our brains way of keeping it all straight, so when we need to recall it it’s easy to find.  The world’s biggest and fastest computer.  When you get to be my age there are something’s that you wish would not have been stored on your hard drive and some that you wish you could just hit the repeat button and have it keep playing over and over.  I have been through good times and bad and luckily survived both.  As I get older seems like there is a lot less good and a lot more of just passing time.  It’s just time.  No meaning, no measure of if it is good or bad,  just time passing on a clock.

When we are young we don’t usually think about things being perishable.  If you think about it everything we are, have, and think is perishable.  It has a date stamp on it that one day will come due.  We in essence will become obsolete.  Something better will come along, the fad of our life will be replaced with something.  We will no longer be the up and coming.  Our cars will lose their luster.  Our house will become old and get that stagnant smell of someone just passing time on a clock that has seen 876,000 revolutions of the hour hand.  That’s one hundred years of perishability ticking away one second, one minute, one hour, one day, one year, and on and on and on.

I have lived a good life.  I have done many things, seen many places, lived in small houses and large mansions, drove fast cars, and cruised in slow ones.  But most important I have loved one woman.  Her shelf life was up about 131,400 revolutions ago.  My clock just kept on ticking though.  Eight thousand seven hundred and sixty revolutions after I lost my love I decided that I didn’t need all of those fancy things in life and more than that every year from then on I would slowly give away everything that I  had until my perishability date had arrived.

I thought it would be easy.  I guess I didn’t realize how much crap a person can accumulate in eighty-six years.  It’s a lot, and very overwhelming at first.  I slowly thought out a system and eventually things started moving smoothly. Life’s memories passing through my fingers one piece at a time, Passed on to someone else, maybe even extending their date for a little while.  Here at the end some things have started to get interesting.  That last can of soup was interesting to eat when i had given away my last set of silverware the day before.  I haven’t showered or shaved since Wednesday because i gave away my razor and last towel on Tuesday.  This last week hasn’t been easy, but it most definitely has been fulfilling.  It’s interesting when you get to the end of all of your things how much we take for granted, and how when you understand their true value, it is so gratifying to give it to someone who desperately needs it.

So here i am sitting at this little cafe on the corner.  I just left the lawyer’s office where I signed the papers to donate my house to some organizations that helps people.  Before that I stopped by the bank and withdrew my last five thousand ten dollars and twenty-seven cents.  I am in my best suit (only one left), and am enjoying the last meal I will ever buy (as long as it doesn’t cost more than ten dollars and twenty-seven cents).  The suit I suppose I will be buried in, so I guess I’ll keep that. The five thousand, well, that’s next on the list.  Who to give it too.  There are several candidates I see.  There is what seems to be an out of work construction guy in one booth.  Got a sad look in his eyes.  Maybe it’s not money he needs.  He evidently has enough for breakfast. How about the elderly women at the bar, maybe,  she’s is dressed pretty nice though.  I really didn’t think this would be that hard.  I guess I didn’t think I would have to make all these judgements of people’s lives.  Who am I to judge what people need or don’t need.  I’m not God or even a shrink, who might know what’s in people’s mind.  Oh well, I guess I will just leave it in God’s hands and hope he points me in the right direction.  My waitress comes waddling over.  I use that term enduringly because she has got to be at least eight months pregnant.  She looks very tired but none the less in a very perky and cheerful mood.  She takes my order and moves on.  I see her move on down to the table that some people have just got up from.  I don’t mean to be staring but I am.  She cleans off the dirty dishes and then grabs the tip.  I expected her to just put it in her apron and move on, but she carefully counted it and organized it and put it away very neatly.  It must be Gods sign.  She was that careful with the money because she needed something. Something that was worth saving for, a crib, diapers who knows but you could see the intensity in her eyes, it was something important.  She brought my meal and it was great.  I sit there thinking of how I want to do this.  When you’re talking about this much money do you just leave it, Maybe write a note.  I don’t know.

I decide to write a note, I want her to know that it is for her to do with as she pleases, no strings attached.  So I start my note:  Dear Sara, (I know her name because she wrote it on the ticket),  I am leaving this money for you because I think there is something that you really have been saving for. Please take what you need and if there is any left please give it to someone else that might need something.  I signed it with the letter C.  I took out the fifty, one hundred-dollar bills and slid it under the one dollar and ten cents left from the ten and 27 cents I gave her for the meal.  I closed the flap on the little book they give you with the check and got up and left.  Just like that I was homeless and penniless.  I have given away everything I have.

I’m a curious gentleman , so I go across the street to a little park area where I can see in the windows of the cafe, and sit down on a bench there.  I want to see the look on her face when she finds it.  It doesn’t take long before she heads over to my table.  Just like before she cleans all the dishes first and then looks in the booklet.  She gets and odd look on her face as she reads the note.  I can see a slight shaking of her hands as she reads.  She slowly sits down in the booth and sets the note aside.  I see her pick up the money and start counting.  I can see a tear our two on her cheeks at about twenty and by the time she gets to fifty her shoulders are moving up and down and there are lots of tears.  She puts the money down and holds her head in her hands for a few minutes and then she takes a really deep breath as if to compose herself.  I think awe relief.  I did the right thing.  Then she did  curious thing.  She took all of the bills, five thousand and one dollars and folded them in half, then took the dime and slide it into her apron and then got up spoke to the manager on duty and ran out of the door and down the street.

I sat there for a moment and my curiosity got the best of me again.  I didn’t have anything to do anyway.  No place to go, so I thought I would just walk the way down the street that she ran.  I was rewarded a few blocks down when I see sitting on the steps of a row house three women hugging each other and crying their eyes out.  I’m still on the other side of the street, so I pick a step and sit down.  One hundred year old bones don’t like to go that far anyway. Pretty soon they all get up and do some more hugging and laughing and then my waitress bids them farewell and heads back toward the cafe.  Then the other two girls giggle and hug once more and then part ways.  One goes up the steps and the other starts across the street towards me.  I guess it is human nature to want to know what the outcome of our good deeds are.  But for some reason I really wanted to know what happened.  As the young woman got ready to pass in front of me I said miss if you wouldn’t mind indulging an old man of what was all that about.

She smiled at me and said “It is a long story.”  I said that is ok, I’ve got a lot of time.  She sat down beside me and started telling me their story.  She said that her sister, the one that went up the stairs has a baby named Jesse.  Jesse has a cancerous mass on his spinal column which is heartbreaking in and of itself.  Jesse needs surgery and the only place that does this specialized surgery is all the way across the country.  The hospital is willing to do the surgery for free, but they have to get Jesse there.  It is too far to drive him so they will have to fly him in a medevac plane and to do that it will cost five thousand seven hundred and twenty-seven dollars.  If you have ever noticed, old people tend to cry a lot, and I had tears getting ready to pour so before i couldn’t speak I said where are you going to get the money.  She said, “that’s the crazy thing.  Last night we got together and prayed for a miracle for Jesse.  We Prayed that God would take him in his hands and get him to where he needed to be.  The tears earlier were because Sara just got a huge tip that will take care of it.  Our prayers were answered.”  Without thinking i blurted out where are you going to get all of the money.  She kind of looked at me funny and said that the tip was for five thousand nine hundred and fifty-two dollars.  More than enough to cover it. I was a mass of tears at this point.  I thanked her for the great story and got up and slowly walked down the street.  I suddenly knew why Sara only put the dime in her apron.  On the way to the house she had taken nine hundred and fifty-one dollars of her tip money and added it to mine.  She wasn’t saving for herself.  She was saving for Jesse.

I walk a bit further and found another small park with a nice bench for sitting.  I sit down feeling like a very weary 100 year old man.  It’s my birthday today.  I decide that I need to write this story down it was too good to not share.

 

To whom it may concern:

If you are reading this story then that means that you have reached into my breast pocket of my suit and got it out.  If you have done that, then my clock has been vanquished.  I am sorry that you were the one that had to find me, but would you please share this story with someone.

If I would happen to have a tombstone would you please print on it “Died broke and Penniless, but with a full heart.”

Thank you:

 

R. E. Cnacetahi

It’s a Red Dog

A teacher was going around the room showing objects and the kids had to identify them.  She held up a banana and said, “Molly what is this?”

Molly giggled and said, “Well that is easy, it is a yellow banana.”

The teacher continued around the room with other objects with other students and then she came to Johnny.  She held up a red balloon and said, “Johnny what is this?”

Johnny thought for a minute and then said, “it’s a red dog.”  

The teacher was surprised by his answer and said, “Are you sure it is a red dog?”

He said, “Yep, it’s a red dog,” and proceeded up to the front of the class and took the balloon and started twisting and folding the balloon until a long red wiener dog appeared. He said, “See its a red dog.”

I have been kicking around this idea of free thought for a couple of years.  I am sure that it is not something that is new,  but it itself being a product of free thought I don’t know where else it might have been used.  My idea of free thought is that in order to innovate you have to stop paying attention to conventional wisdom and start charting your own course.  We can know everything about something and be called an expert, but that really only means that you are an expert in what we know about one thing or another.  Innovation happens when you have learned enough and start questioning everything that the experts say and start thinking for yourself.  I would even go so far as to say that questioning the experts is not enough.  Sometime you have to forget the conventional answer so your mind can come up with a new one.

A good example of someone who did this is of course Bill Gates and his fellow world changers.  They were smart enough to get into MIT but found that the experts could not teach them anything and chose to leave.  They created because they probably didn’t know all of the answers so they created their own answers to questions.  They didn’t rely on what the answer was supposed to be in the book.  They had questions, found their own answers and wrote their own book.

So what do a Johnny and Bill Gates have in common?  Well, they chose to see what no one else choose to see.  Sometime in our past, someone was holding a red balloon and saw that red dog that has been entertaining kids ever since.

If you look though history you will find that many of the people who invented things we labeled with some type of learning disability or were just called dumb.  This made me start to wonder about a few things.  Especially about how we treat our kids today that are mentally challenged, learning disable, or what ever fancy word they have come up with to tell us that they are different from us.

It seems like today we are fixated on trying to get these kids mainstreamed into our classrooms.  We want them to fit in as much as possible, I feel like the experts believe that they want them to be able to think just like us.  They want them to try to be able to fit into society as best they can so that they can have the best life they can in our world.

Maybe that is the problem.  Maybe the experts have it backwards.  Maybe instead of trying to make them fit in our world we should open up our hearts and try to understand theirs.  I’m not talking about scientific understanding.  I’m saying that we understand that they see the world different from us and that is awesome, and maybe, just maybe, we could learn something from them about how to live our lives, if we stopped trying to make their lives just like ours. Maybe we have more to learn from them than they could ever learn from us.  Maybe we don’t understand the depth of their thoughts because we are so entrenched in ours.  Maybe, we are the dumb ones.

 

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.”

Dancing in the Rain

Swallow my fear I shall dance in the rain. Lay my head back and let it whisper to my soul that It will be okay.  Let it wash away my sadness.  Let it run my pain away.  Let is dance on my skin and wash all the tears away.  The mist makes my breath heavy, I see it float away.  The fog holds my thoughts, I just can’t seem to break the grey.  I hold on to the silence, I hold on to the fear.  I hope the rain will make the way seem perfectly clear.

Swallow my fear I shall dance in the rain.  The sadness digs deeper.  I breath out with a sigh.  I try to hold my feelings in, but it would just be a big lie.  Fear fills me, sobs fill my eyes.  My heart is being broken.  I can’t stop my will to cry.  I double over with sadness. I fall to my knee’s and pray.  God please help this rain get me through today.

Swallow my fear I shall dance in the rain.  I gather my emotion, I put it back inside.  It’s time to tell the fear and pain I am done with you today.  My tears have all now fallen, washed off with all this rain.  Its time to get my thoughts on track, it’s time to get back in the game.

I have swallowed all my fear, I have flushed is down the drain.  I choose to live my life again. I will live it frame by frame.  Where ever life takes me, whatever path I come too , sometimes we have to let it rain, there is nothing else we can do.   I have a lot of choices, I have a lot to change, but today i think I will say the hell with it and just go dancing in the rain.