2 Years of Pain vs 2 plus weeks

How the heck did I make it through two years of pain when I was living at home. I honestly have not idea how I made it through those two years. The type of pain and the strength of the pain I had, I can not even start to comprehend it. It is almost like it is wiped from my memory sometimes. The reason I am talking about this is because of the pain I have been experiencing in my throat. It is grueling and it has only been about two weeks and it is eating me up. (Ha, no pun intended on the eating me up). The pain consumes you. It is all you can concentrate on sometimes. I just must ask again and again how did I do pain for 2 years? Well I did it and it was not easy. Painkillers helped but the mental anguish of pain is so tough to deal with. Please do not get me wrong. I am OK right now. Pain is just one of those things that do not allow you to fully enjoy the moment. That is what I am dealing with. Powering through the pain and enjoying my time with my family. I love saying my family.

Otherwise, I have found a chicken pot pie that is soft and has good nutrients in it that we have been eating. Alek is starting to grow hair. It looks blondish brown. We can not tell yet, because it is like peach fuzz on his head.

I just wanted to say that our groups of friends are a very fortunate and successful group. You are all blessed with good health and beautiful families. Do not take this for granted. You all have special qualities and are special people. Take each moment of life and cherish it. Cherish every moment. Do not sweat the small stuff. Make it goal to appreciate your life every day. Take a step back and say what about today is good about my life and embrace it.

Settling In

We are starting to settle in at home. Starting to get the place in semi order. It is crazy how difficult that is with a baby. Alek is 10.3 pounds as of yesterday. We went to the doctor. He has a little cold but nothing to worry about. He is really starting to grow and change. It looks like he is starting to get some hair also. Some looks blond and some looks light brown. So only time will tell. We also can not tell what color his eyes will be. This part kills me. I just want to know what color his eyes are. I guess it takes up to 6 months. When you think about babies it really is a miracle. How they develop in the womb and when they come out they are alive and screaming. It is amazing to have created life. It is amazing to see life grow into this little being and think we are responsible for every moment of his life is awesome. Don't get me wrong I am scared also, but that just goes with the territory.

The greatest thing about my recent health problems is that I have been able to spend time with Alek and Kath. There is no question about that. It is truly a timing issue that is a gift. Not that I would ever want to go through what I am going through of course but you take the good when you can. I am feeling pretty good considering I can not eat much solid food. Mashed Potatoes, pancakes, eggs, ice-cream, Lipton noodle soup have become a staples. I can not wait for my throat to get better. I am sure you guys are sick of hearing that but that is what I am going through. It is a grueling grinding pain in my throat that will not go away. AHHHHHH.

Well it is a nice sunny day here in Hollis. It looks like it is in the upper 40's. Maybe I can get out and take a little walk.

Over and Out
The B Man

My love of my life

Katherine just continues to amaze me with her stamina and support. I have been so tired and trying to pull my weight as much as possible. She is doing so much and powering through this it is amazing. She has such resolve and determination it is so great to see. She is so good with Alek even when she is tired. She keeps her cool and talks to him in the gentle motherly voice. I can not help but smile myself. She is the best. I worry about her so much. I just wish I could do more right now. I get the Baba ready. I feed him. I even change diapers. I know. I am just so tired that sometimes I can not contribute and that kills me. It is such a wrenching feeling in you gut. It really sucks. The LG (Little Guy) is getting heavier too. I have to be careful with my back and the thought of not be able to carry him is mind blowing to me. Scary and sad. Hopefully I can build my stamina back up and that will not be a problem when I can start eating solid foods again. Well speaking of Alek he needs a bottle, I got to run run run.

Later

Back Home

We are back home. We had quite the ride. Up until Manchester, NH everything was grand. Then our first witness to a baby meltdown. Alek woke up and just started crying like crazy. He was hungry and did not want to wait and could not wait. By the time we pulled over he had tears streaming down his face. The rookies we are were not even prepared. We did not even have a bottle ready. Rookies. We know better than that. Well we got him fed and then we were off to Hollis.

As many of you know and I believe I have mentioned we are going to be selling our house. The funny part is that we have really convinced our self that we did not even like our house while we were away. Our minds had convinced us that we did not like our house. That is how powerful the mind can be. It can make you think something you don't believe. Well the bottom line is we love our house. We were very happy to be home and sad of the thought of selling it. We have put so much time and effort into this house. My parents have put so much time into this house. Friends have put so much time into this house. We are really sad about selling it, but we both know that downgrading at this point to a townhouse is a good decision. With the future uncertain we need to get ourselves in the best situation for us and Alek.

My throat is still in a huge amount of pain. It is absolutely brutal. It hurts to drink water. Let me repeat myself on that one. It hurts to drink water. Crazy uh. Eating is like torture. I am hoping and praying it gets better soon. I have not really explained why this happened. It is from the radiation and the way the radiation goes through the body. Since they radiated the neck area they go through and around the upper throat. The throat being as sensitive as it is gets the effects and gets sore. That is the main side effect and fatigue. I just can wait to eat normal.

Going to hang out with Alek and Kat. See you all soon.

Love ya all
Kris

Going Back to Hollis, Hollis, Hollis

First off Happy Easter Everyone.

Frank is getting the car packed up. Wow! It is crazy how much stuff we have, just crazy. The little guy has double what we do. All the stuff you need and have to have amazes me.

Excited to get home. I am intrigued how Alek will be at home. He has been up here in Hanover for a month or so. He will be in a new world for a while and then when I go to Houston it looks like Kath and Alek will come back here. I just wanted to thank Frank and Betty for putting up with us. I know it has not been easy. I am sure you can not wait to have some privacy. You guys have been great. Thanks for all the support and help getting back to Radiation. We love you.

I am lost for words right now so I guess that is it for the day. I will write later today or early this week.

I just want to say I love everyone of my family and friends so much. You guys are the world to me and I could not get through this without each and everyone of you. Inspiration is what you all give me, Inspiration.

Mom and Dad, Happy Easter!!! I love you so much. Thank you for everything also. Dad thanks for putting up with me while I go through this and thanks for driving back and forth to take me to radiation. You are my savior and always there, that is your best quality.

The Big B

Done with Radiation

Yahoooo. I am done with Radiation. What a relief. My throat is brutal. You know when you get a chip caught in your throat, that is what it feels like 24-7. But just the thought of being done gives me a lift. I am about to get some oatmeal. Yummy. Soft food is king right now.

I will be heading back to Houston on April 14th for about a week plus. Lots of tests and then I start the Clinical Trial that I went out there originally for. It is such a bitter sweet thing. I can not bear the thought of leaving Alek and Katherine though. It kills me just thinking about it. It really does. I hate the thought of Kath being alone. It is not what I want or what she wants but we both know there is no other option. I just thank god that I know that she can handle it. I have complete confidence in her. I do. I know it will be tough but she is a stud in perseverance. She is. I love that word by the way. Perseverance!!!! It is what we all do and must do.

Alek has been really playful lately. He is smiling like crazy. It is so fun seeing him smile. There is nothing like it. He loves looking at stuffed animal bears. He loves the big eyes.

Thanks for all the comments on the blogs and emails.

2 Treatments to Go

Wahhooooooo!! 2 more treatments to go. I will done Friday at 9am. I am so pumped you can not even imagine. My throat is killing me. They say that should go away pretty quick. I hope so. I can not wait to not have to worry about what I have to eat. I am not sure what it is going to be. Right now I am thinking a nice juicy hamburger or a steak, but that might be a while.

Will be back in Hollis on Saturday and can not wait to start introducing Alek to you guys. He is really growing fast. Crazy. Getting a little chub working. I love putting him in my knees and playing with him. He is starting to smile and make noises. He plays with this little rattle toy. He grabs it and shakes it. It is so much fun. I never imagined loving someone so much. It is awesome!!!! He is my inspiration.

March Madness starts today. I feel like I am in college again. I am watching college basketball. Funny.

Well, lets get in touch and make plans people. I can not wait to see you all. Love you.

The Wives in our Lives

Yeah that is what I am talking about today. I was thinking about this last night while Alek was not sleeping. All of our wives. Our group has the coolest and most loving wives I know. They are all awesome. I must say Katherine is truly the best thing that has ever happened to me. When I say this, I must say that finding the friends I have is just as important and great but having a wife like Katherine can not be better. She is the most caring and nurturing person. She is my companion and I love her so much. She is tough as nails to be able to have gotten what we have gone through in the last 7 years. God, the health issues and other things. I really am the luckiest man on this world to have found her. Destiny played its role. I must always think of Jeff when I think about finding Katherine. The bottom line is if it were not for Jeff, Katherine and I would not be together. That is the truth. So Jeff, I love you and miss you and thank you for putting me with my soul mate. God bless your soul Pal. Sorry to get sappy again.

Back to why I wanted to talk about the wives. All of your wives are my friends and Katherine friends. We appreciate everything you do and all the support you give us. I think I can speak for the whole clan of boys that the love we share for each others families is unmatched in this world. It is. It really is. So what I want you boys to do is when you get home today, walk up to your wife and give her a 20 to 30 second hug. Tell her you love her so much and could not live with out her. Because that is what I am about to do when I get off this blog. I am going to give Kath a big hug and let her know just how much I love her. Love is one of the greatest things in life so make it known that you love your family, fiance, brother, sister, mom, dad, everyone. Love is in the Air, Da Da Da Da Da Da Da

Anxiety is a crazy thing!

Man, anxiety can play with your mind. I did not sleep well the last view nights due to anxiety. It is so powerful in how it controls the brain. It is so strong you can almost feel it bubbling in your blood. It is like a river of thoughts just consume you. You spin, you turn, you do all you can do slow the roller coaster of thoughts down, but you can not. You can maybe slow it down for 5 seconds and then it is like you are on a roller coaster ready to start the first decent, the only thing is your are not happy about it. You are not at the amusement park. You are at home trying to sleep. The worst part is you are tired and you can not sleep. Wow, depressing. Sorry. I can not help but be honest with you guys who are reading this.

Who is reading this? I know some of you leave comments and some have emailed me and said you read it. Thanks. I appreciate that. It gives me the motivation to try to come down to the computer and write a sad commentary. I will try to be more upbeat next time. I am just moody and tired. I saw 60 minutes the other day and they said sleep is one of the most important things that we as Americans do not take advantage of. Lack of sleep makes you more moody, less productive and also hungry. The hungry part was surprising to me. So to all of you who do not get enough sleep, get some more. Just do it, do it, do it. (Starsky and Hutch accent needed. I love that movie. The new one)

A FAITHFUL FRIEND IS THE MEDICINE OF LIFE

It never stops!!!

Well it never stops in terms of the fight against this sun of a gun they call cancer. I got my Pet Scan results back today and it looks like the tumors are back in the liver again. Yep, again. Wow. To get some good news would have been great but to be honest with you I am not that surprised. With the cancer being so active I had a feeling they would be back. Weird but I did. The good news is that one of the chemos that I will taking when I go on the clinical trial has had good results in the liver. So that is promising. But I still wish is was not that way.

It is just sometimes so difficult to keep the faith. I often ask my self how I do it. I really do not know, I just do. I have to. I must and I will. There are no other options. Trust me I get down. I do, but like the boxing poem I wrote. I must get back up not matter how hard the blow. Get up. I am in pretty good spirits considering the news. I am taking it with strides. The biggest pain as stated in my previous posts is not being able to eat much. It really sucks. You watch TV and these ads come up with these juicy burgers and fries and my mouth just salivates. Nachos, Buffalo Wings, Potato Skins, salads, Chinese Food. Thinking of it it like painful. I have to stop.
I will make a shake tonight. That does the trick.

Well, I love you all and will check in soon.

Needles in my Throat

Ahhhhhhhhhhh. My throat is killing me from the radiation. Anything I eat hurts, except for popsicles. I have to watch my sugar levels though because of the steroids. I check my own blood every morning. I would eat ice cream all day if I could. The cold sensation on my mouth is almost like no other right now. So I am going to be making some shakes and start looking for soft stuff to eat. It is not fun. Like you all, I love to eat what I want and when I want and to not be able to do that sucks. I am craving all kinds of things. That is how it works in life. When you can not have something you want it more.

Otherwise everything is good. I will be done with radiation on Friday and we will be heading back down to Hollis on Saturday as of right now. Kinda weird to think we will be going to our own home. I really have not been home in 3 or 4 weeks. Weird. Alek turned 6 weeks today. It does go quick.

I can not wait for all of you to meet him. I really can't. He is the joy of my life! He loves to sit in my knees and play. I have these little finger puppets, a frog, a parakeet and a panda. He loves looking at them. We also have a little jungle gym set he lies on that plays music and flashes lights. He loves that too. He is sleeping pretty well at night. I think 3 plus hours is our record so far. Kath wakes up and feeds him and them I feed him his bottle. I am amazed at the mother and son bond though. There is nothing stronger then it. There simply is not. I guess that is not a surprise coming from a mama's boy like myself.

I just want to thank my parents again for all their love and support. They are awesome and I love them so much. It is amazing what they have done for me and for us. Amazing people.
I LOVE YOU MOM AND DAD and Sandy too.

Well, I am looking forward to making plans to see you all in the next coming months.

I GOT THE FAITH AND ATTITUDE. I AM GOING TO GET THROUGH THIS.

Settling In

Sorry that it has been a few days. I feel as if I am starting to settle down my horse. I am starting to settle in to where I am at this period of my fight with cancer and life. There are still so many things to figure out but I am starting to circle my thoughts around them. I am OK with the time I will be out of work. It bothers me that I can not work, but I am accepting it. I hate that I have to really on family to get me back and forth to doctors appointments, but I know they are OK with it and so I am I. Although you depend on people, it is one of those things you never really want to admit to.

I am reading the book "Into the Wild". I have not read a book in so long, I am truly ashamed of myself. I actually am enjoying reading. Crazy. This book is about this kid Chris who is just enamoured with nature and against society. He wants to live off the land and does for long stretches of time. His background is from a hard working family who is very successful. He eventually goes to Alaska to live of the land there and dies. It is really a interesting quick read. The one thing that is very different from what this kid needs vs. what I need. He is much of a loner and see the values of relationships but that is not what makes him tick. I am at the stage where I need the support and love of my family and friends. I cherish that like this kid would charish a drip of water while living in the desert for months. He just wants to be alone and see if he can beat the odds of nature. In that sense we have something in common to will to live. He loved life, it was just a different love for live. I am just happy to have the chance to keep fighting this cancer. I am so sick of it, but I just have not choice. I just simply have not choice but to fight, fight and fight more. FIGHT!!!!.

About Alek and Katherine. Although I rather be able to work and not go through what I am going through, being able to spend all day with my new family is amazing. I can not help but include this is. I can not help but to want to accelerate his growth. I am so afraid that I will miss out on his older years. I just want to see him crawl, walk, throw a ball and say "DADA". You know the instant he says it, you will see it time stamped on the blog. Oh yeah baby. It will be coming out his month as I am typing. Kath is really amazing with Alek. I am worried about her. She has been a rock through this all. I love her so much and just want her to be OK in the future. My one goal in the next few years is to find a way to raise funds to pay off or mortgage. I don't know how, when and through what means, but I have decided I am going to try. This is what scares me every hour of the day. The thought of not being able to provide a roof over their heads. I want that expense to be gone. I want it gone. Realistic, I have not idea. Stranger things have happened.

Well that is enough for a day. I love you all. Over and out.

Video of Alek

Here is a link to a video of Alek. Click here

Structure

Adult Attention Disorder is what I am experiencing right now. There is nothing that can satisfy my brain. TV not working. Thinking about bad stuff is not fun and does not work either. I have done most of what I can for my job today with my status. I am hungry. What is new? Your mind when unoccupied by a task or project (what you do at work) is so powerful it amazes me. The roads, twists, turns, burns, ideas it will take you through in one mil-second is insane. That is why having a job is one of the best things in life. Yeah, I know it is not always to most fun thing and it does not always give you all the satisfactions you are looking for in life. It is however a place of sanity. A place where you can go everyday and have a routine that brings structure to your life. Structure is important. That is how we are built. Our daily structure gives us a path to walk down that we know we are comfortable with. If that structure is not there, like in my life, you don't know where you can place your foot the very next day you get up. You may step out of bed into a hole that held your structure together. Anyone of us could have our structure hit in a second. That is why we protect the things we love and cherish, because they give us hope that our life will really not be that different tomorrow from today. Isn't that somewhat of our goal in life. We want consistency in life. Yeah, change is cool but do we really want change in our life. I guess it depends on what the change is, but I argue that if we can keep our life on an even keel, we are happy and being happy is Good. So embrace your job today and embrace the structure you live in.

Kris

I really enjoy just blabbing off at the mouth on these blogs. It keeps me sane for about 5 minutes. Ha Ha Ha

Sorry for any spelling mistakes. I try to proof as much as possible.

Relaxing Day

Sunday. A day of relaxation. We were able to sleep in last night. We are still tired, but at least we were able to sleep in. I still am amazed at how the human body can go from sleeping a consistent 6 to 8 hours a night to a consistent 4 hours of broken sleep and work. It really does amaze me. I can honestly tell you that when people say get ready to loose sleep, they are not kidding one single bit. WOW. WOW. However, I know there is no substitute for it. There really is not. The joy one gets from looking in the eyes of their baby is unique like no other feeling. So many of have experienced it and so many of of still will experience it.

I just also wanted to start to talk about some of the topics that are part of my daily life. These are some of the topics I may choose to include in some writings in the future of my book. The book thing is a dream and I would not even know where to begin and what to talk about, but I do think I have a story. Just what angle. What would the goal of the book be is so hard to even get a handle on. Where would I start? What format? What do I include? What? What? What and more Whats? Then How? How? How? How? Well I might have time. If any of you had any thoughts on this, I would love to hear from you on it.

I had talked about the "Food Groups of Cancer Survival" a couple blogs ago. I am going to just brain storm a few of these groups right now and then ask for feedback and comments.

1. Positive Attitude: We all know I would not be here if it was not for the positive attitude. All though it is definitely not always there, I find it. I find it somehow and this would be the staple in the food group.

2. Support: I have the best support group in the WORLD. There is no doubt about that. You all are the most amazing group that could ever help someone get through what I am going through. The emails, the phone calls, the inspirational talks, the man this really sucks, and all the financial help we have received is priceless, truly priceless. I can only hope that Kath and I can get through this. I know we are going to have to sell our house we have put so much sweat and tears into. I am not sure how long I will have my job. So financially I am very concerned and probably have never been so concerned in my life, with Alek here. It scares the living shit out of me to be honest with you. All your life you go to school, you do things in life to set yourself up to be a good citizen so you can get a job, get married and have a kid. All of these I never thought would be possible 8 years ago when I was dying are now reality. I have come so far and worked so hard, I just want to be able to provide for my son and give him a better life then mine, not harder. Sorry for the tangent, but I guess the bottom line is that it still comes down to being supported and supporting others is a major "Food Group" for a cancer survivor. It is important to not only get support but to give as much as so can.

That is a start and some more as to what is going on here. I am tired and in a little pain. I have not eaten in about 15 minutes so I better get something to eat. Seriously, I can not stop eating. It is ridiculous. Scary. I am blowing up like a balloon and all I can do is just watch it happen. I am seeing my Docs tomorrow about it and hopefully they can help this.

Well love you all.

Thanks Betty and Frank for letting us stay with you for the next two weeks. We appreciate your support and love you guys.

Plans in Place

Wow, what a feeling to know that plans are now in place.

It all started Friday afternoon. The MRI films that Dartmouth had been waiting for all week finally arrived so the doctors could get on the same page. From the time the doctors got the MRI in Hanover it was a matter of hours before they wanted me coming down to get started. I spoke with them at 3:00pm and by 6:00pm, I had received my first Radiation treatment. I also received another two today and will restart Monday morning. I will be receiving about 2 treatments a day for 12 days of radiation in Hanover, NH. This means we will be up here in Hanover. Side effects are fatigue, nausea, sore throat, rashes and red skin. I remember the soar throat can get pretty bad. It might be a lot of Jello, Pudding and Ice Cream if that is the case. I can tell you what. I am on steroids right now for the pain and radiation and they make me hungry 24x7. My face is about as round as a balloon.

Just an FYI, radiation does Publish Postnot hurt. It is very similar to lying in an X-Ray room. They lay you down, they line you up and then they zap the area they want to treat with Radiation. In this case they are radiating the tumor which has engulfed the spinal cord. The danger of the radiation is compromising and compressing the spinal cord, which could lead to me becoming paralyzed from the spot where the spinal cord would compress. This is so f&*&ing scary. So so so so scary. I pray this does not happen, but if it were I pray that I have my hands, so I can at least hold Alek. However, if I were paralyzed the worst thing would be is that I could see Alek grow.

So, I would like to catch up with a bunch of you this week. Please feel to post comments. Many of you have already done this and I think it is great to hear your thoughts and have them put into this blog. Love you all.

B the Blogger

Out of my Skin

I am about to burst out of my Skin. I can not get any answers from my doctors. AHHHHHHHHHHHHHHHHHHHHHHHH. I am getting so so so so frustrated. I need answers. I need to know what is going on. Patient is a virtue, sure but this is unbearable. The mind is so powerful and it never stops. It does not matter if it is roaring ahead at light speed or it is slowly churning like butter, it messes with you. It sends positive thoughts. It sends negative thoughts. It sends thoughts of joy. It send thoughts of doubt. It sends thoughts of what ifs. It sends you into a gigantic tornado of thoughts and the only goal is to come out of the the wind tunnel with your head on somewhat straight. You just need to be able to look up and see that world as it is. It is right there is front of you. It will go on, just when and how I will effect it in the short term is what is effecting me. I am in an absolute state of limbo. I just want to know what the next step us and where it is going to be.

On the brighter side. Alek is doing amazing. The smiles, laughs, and sounds he gives off are music to my hears. Katherine is so good with him and she continues to be the Rock in my life. Her ability to screen out negativity and stay focused is something that is her strongest asset. I am not sure if I will be ever able to figure out how she does this. Maybe that is why we are so good for each other. I do wish every morning I wake that she did not have to go through this. I love her so much and I just wish it was so much easier, even just a little easier would sometimes be nice. If there is one thing that my illness has given me is "LOVE". Katherine is "LOVE". I could go on and on about her as you know, but I challenge you guys to post a few comments on this subject. Katherine I love you so much.

A quick thanks to both of our parents for enduring these hard times as we count on them for strength, support and patience. Your hands on love is what we need and we would not be able to do it without you. We love you all.

"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