"Progress is Painful"

Frustration is what I feel big time right now. We still do not have an answer on who, when and where my treatments are going to take place. Getting records from one Doctor to another and having all them all get on a the same page is like working a miracle. I can assure you that they all are reviewing and reviewing for the right reasons. I am just glad we have some time to figure this out.

Today the big theme in my mind is what will happen from here. Uncertainty is not a fun place to be. Will I be able to work? Will I be able to keep my job? Will we have to sell our house, we have invested our heart and soul into? Where will we go? Will we be OK financially? Will I be able to walk in 5 years? Will I be able to take care of Alek that way I want to? On and On and On, questions like this pop into my head.

I do all I can to stay focused on the task at hand, Survival. That is the only thing that matters. I must survive this next round of beatings. I must be the heavy weight boxer I portrayed my self as in my poem from 1999. Get up, do not give up. You all know, I will never give up. You know that, but I find that if I can share some of my thoughts with you it is therapeutic. Every single person that has touched my life, I love and cherish so dearly. I want you to be able to see my new family meld into yours. I want Alek to have a tight knit community as the one we all have today. I want to live to see him grow as young children do. I wish I could sometime fast forward my life a few years, so would know that he could say "Dad, I love you!" and see him walk.

Life is truly something that we must not take for granted. Do something you want today. Go get that greasy hamburger for lunch. Go buy those shoes you wanted. Make plans with a friend you have not seen for a while. Say hello to a stranger. Help someone get across the street. Smile, smile, smile at everyone you see. Smile and laughter and medicine that no one can replace with any drug. So that is my motto for the day. Smile and say hello to everyone you can today.

Peace out.
B The Blog Man

Alek is 1 Month Old and I am in Pain

Pain is the final theme for this evening.
I spent most of the day on the road speaking with work and I am paying for it.
The "No Pain no Gain" saying is in full effect today.

I will be meeting with Radiology at 8am Tuesday 3/4/08 to see what the next steps are.
It is a good feeling to know things are moving.

Today is Alek's one month B-Day. Crazy, Crazy, Crazy to see how fast they do grow. It seems as if yesterday he was just born. Happy B-Day buddy.

I encourage you to send me emails, stories, letter, poems and qoutes that I can post on this Blog. Also you can post comments on anything I write.

KPB

A Poem written by me in 1999

Here is a poem I wrote in 1999. It was during those 2 years I spent in bed not knowing what the next day would bring. I remember writing it, but I had not idea that there was a copy of it anywhere.

Today my mom sent me this poem and I would like to share it with you. The crazy thing is many of the same thoughts I had then, I have now. So here it is.

The Fight

By Kristofer P. Beinder

1999

Everyday I FIGHT

I FIGHT in a way I hope you will never understand

Some days, I take a step or two or three forward, and it feels GREAT

Other days, I get BEATEN down like one of Mike Tyson’s opponents

But the difference is that I get up

I get up no matter how hard

I get up beat

I get up no matter how much it hurts and

Believe me it HURTS

Words cannot describe what

I have been through the last year

Many “tears and lots of fear”

Some days I sit in my bed and all it is “tears and fears”

I have to simply “shout and let it all out”

Support is all someone has for when they are down

A person who is down wants you there with them every moment

Because they are alone….they are alone

The notion that “everybody is ruling the world” but me hurts

And I must realize nothing lasts forever.

Poem from Alek Beinder

My name is Alek Beinder
My dads' friends use to call his dad a coal miner
But I know that ain't true, His name is Bruno Beinder
And every time Bruno wants to go ski
I will be telling him "you better please take me!"
But if I play Hockey, I know my Dad will be proud
The Pizzuti's and Beinder's will be cheering so loud.
Then there's the game that Tiger Wood's play
You know I'll be playing that game with them some day.
I may even end up playing drums in a Rock and Roll Band
Mom and dad will will be raising their hand
No matter what I do, no matter what I say
I will be alright, I will be OK
I know my family will love me every day

Quote from Megan Walsh

"Courage is not the absence of fear, courage is the strength to act wisely when we are most afraid."
-Mary Fisher

Home Sweet Home

We arrived home back in NH today. What a feeling!!! In the olden days, the best part of coming home from the airport was people could wait for you at the gate. Not these days. It is always curb side pick up, a cab, a bus or public transportation. Today was like the good old days. My dad and I turned the corner and to my surprise my mom stood there with her arms wide open for me to embrace. From my wheelchair, I stood up hugged her and cried. It was beautiful, I was home. This time it really was different. It was so amazing to be back home. Sometimes you really take that feeling for granted. It is a very interesting feeling to comprehend. My mood, my outlook, my hunger and my emotions changed on a dime. I was home where my family and friends were close. I had the confidence in knowing I was no longer in a place where I felt helpless and confined. My spirits wondered as I gazed at familiar sites. I could not wipe the smile from my face as I would soon re-unite with my baby son and wife. This is the most time I had ever spent away from Katherine and ironically he was part of that. I was afraid he would not know who I was, I really was. I was afraid my voice would be lost in his small little brain. This however was not the case. After a long journey from Manchester to Grantham, to Hanover, the time had come for me to see Alek and Kat again.
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It was deja vu. As I saw Kat and Alek, I smiled and cried and we embraced. I could have held them forever. There is truly nothing like the love that I already feel for this baby. I know there is not other emotion like this. I sat down and put him in my lap. Our eyes gazed at each other as if we were in sync. My voice opened his eyes like the light during the first seconds of his life. Dada was home. Dada was holding me. Dada loves me. A great moment.

It was soon time to sleep, which is a word that had slipped from my vocabulary for a week plus. Sleep was non-existent up until now. I was finally able to sleep and relax in the comfort of my family. I was able to hug Kat, I was able to hold her hand, I was able to feel her touch. Touch, another line item in our life that is taken for granted. It should almost be one of the food groups. We all want it, we all need it. It makes us happy. Thus it is declared, I now add touch to the "Beinder Food Book."

Thursday's Appointments

Thursday afternoon might have been one of the longest days in my life. This was the day that I would truly find out my options and plans. Of course it never goes as planned. Doctors are rarely on time, and this was no different. We were due to see the Radiologist at 1:00pm and the Clinical Trial team at 1:30pm. Around 2:30pm we ended up seeing the Clinical Trial team, who was waiting for us to see Radiology. By 4pm we were finally with the Radiologists with good news. They have come up with an option to radiate that could be followed by an experimental Chemotherapy.

Needless to say. The radiology option allows us to explore having it done locally. This meant we were on the fast track to booking a flight home for Friday afternoon. WEEEHOOOO. I could not be more excited