Where to start????

Well it has been an eventful couple of weeks since the last time I wrote. Hence the title where to start? Well I will go in sequence.


One: I visited Dana Farber on the Friday, December 5th. It was a very good meeting. There are several ideas they have for me. They are going to analyze my tumors from my liver surgery to see if there are two growth hormones they can block. The concept is if they can block these growth hormones they block the growth of the tumor cells. If this works there is one clinical trial available and a drug that is already on the market. They also have 2 or 3 clinical trials that they may be able to get me in. For the trial they are thinking of doing first, I would have to travel to Boston at least two to three times a week. The other thing they suggested was doing radiation to the new tumors on my lower spine that were posing a danger. They figured it was a good idea to radiate before the pain in my lower spine got worse and also so it would not interfere with the clinical trials.


Two: Katherine's mom came down for a visit that weekend. About an hour after she left our house we got a call from Kath's dad to inform us Kath's mom was in an a very bad accident near Grantham. Since my parents live in Grantham I immediately called them to see if they could get on the highway and find the car. My dad drove up and saw the car on the opposite side of the highway that Betty was travelling. We decided at that point to pack and head up to the hospital in Lebanon. We were fearing the worst. She was extremely lucky and walked away without a scratch and was only soar. We saw pictures of the car and if you saw this truck you would be amazed that she is still alive. Also if you saw the site of the accident you would be amazed she is alive. This was tough for us and Alek since we had to quickly leave home and then the next day head back home.


Three: On Thursday December 9th Kath and I woke at 2am to find out we had lost power. So we decided to move downstairs into the guest bedroom where it was warmer so we could keep Alek warm. Well the problem was it sounded like we were in a war zone. Trees and branches were falling every 30 seconds to a minute and it was loud. I could not sleep and either could Katherine. I was sleeping in the living room. I was so scared a tree was going to come through the house, we decided to move the mattress out of the guest room into the living room. Finally we got about an hour or two of sleep. When we woke we decided to head up to my parents since they had power. As we woke the next morning our neighbors called us to let us know that our basement had flooded. Great, we had just refinished the basement this fall. They decided to call the fire department and they pumped out our basement. Then Bruno and I had to drive down to hook up his generator to the sump pump to avoid more water from coming into the basement. We looked many places for generators and could not get them. They were a hot commodity. They were selling them off a truck from North Carolina for $2000.00. We finally were able to get one 4 days into the outage. We did not get power back for a week. We ended up staying with Kath's parents for that time to keep Alek warm and safe.



Four: On Friday, December 10th, I got an appointment with my doctor and the radiation oncologist to go over the radiation plans. The plan was to radiate for 10 days. They would radiate the lower part of my spine to try to slow down the multiple tumors growing on my lower spine and especially one that was very close to the tail bone that has been causing me pain in my hips and lower back. I started radiation on Monday December 13th. When I got there the doctor met with me and informed me that it would only be five days of radiation. That was a relief. As is turned out with the storm we were in Hanover from Monday to Thursday so I did not have to travel from Hollis to Hanover everyday (1.5 hours one way).

What else is there. I think I am missing something but that is enough for one post.

I would like to thank the new followers that signed up. Thank you.

I would also like to wish everyone a Happy Holiday. Merry Christmas!!!!

Bad Test Results

Well, the news is not good. The chemo is not working and my counts have gone up even on the chemo. It just seems as if the tumors adapt to the chemo or are just to aggressive for the chemo. So I am off the current chemo. The PET Scan and MRI results were not good. There are additional tumors on the spine and in the liver. This is not a good sign at all. I am very devastated by the news. When I heard the news all I could think about was my family and how long will I be with them. I have no idea how long I will be here and that uncertainty kills me (no pun intended). It is hard to know if I wish I knew how much time I had or is it better to not know. I am not sure what would be better. I guess if I knew I could plan the time I have. I don't want to spend the last part of my life in pain and in bed like I did 10 years ago. I want to do some things. Kath and I have only been on one vacation during our 7 years of marriage. I want to live long enough to take Alek to Disney World. I want to take Alek and Kath to Austria. All these things I don't know if I will ever be able to do and this depresses me. I guess we have to just hope that we can find a treatment that works.

We will be headed to Dana Farber on Friday to discuss what options/clinical trials they have available for me. As stated before, I will have to wait 4 weeks to start any clinical trials. This is scary since my counts are very high. It just seems when the counts are so high it is tough for the chemo to get the counts down. It is common sense. That is why it is so frustrating that the insurance company did not approve the use of the chemo. My counts were much lower when we put in the request for the chemo. I wonder if the chemo would have worked if we did not have to wait so long to start it. The thing that will suck about going to Dana Farber is I will have to travel to Boston 2 to 3 times a week. It is tough on my parents who then have to travel down to Hollis and then to Boston 2 to 3 times a week. It is however much better then flying to Houston, TX once a week. My parents have been so supportive and accommodating. They are always here for me and willing to do what ever to help us. I guess that is what being a parent is about. You do what ever it takes to help your child get through the good and bad times in life. They have done that and I can not thank them enough. Plus they absolutely love Alek. I love watching my Dad with Alek. Over Thanksgiving he was reading a book to Alek and it was the cutest thing in the world. I love it that they cherish every moment they have with him.

Katherine continues to amaze me. She is so strong during these times. Yeah we both shed tears in fear but she it truly a rock. I love her so much, and could not do this without her. I just wish she did not have to deal with this and had a half normal life. Our life is like a continuous roller-coaster. We have our ups and downs, we have our twists. I just want to get off the roller-coaster. However for us the roller-coaster just keeps going. We get to the line where you can get off and zoom the coaster takes off again. There is no time to catch our breath, just constant ups and downs. We are under constant stress with my health, selling the house, me not working and of course finances. The stress gets to you and effects your body and mood. I have a real hard time getting motivated.

I will be back next week with an update on Dana Farber's findings and plans. Until then, have a great week and talk to all later.

Kris

Happy Thanksgiving!!

I just wanted to wish everyone a happy Thanksgiving. Enjoy the time with families and friends as that is what it the most important thing in the world. Plus good eats is not to bad either.

I will be in the Hospital all day Friday getting a Pet Scan and MRIs. I am there from 10 to about 5:30pm. These test will give let us know if the tumors are stable, growing, shrinking or if there are any new tumors. It has been at least 4 months since my last MRI so this is a big test. One thing about being at the hospital is I will avoid all crowds as everyone will be shopping. Big black Friday.

Alek has two really bad ear infections and has trouble sleeping the past two nights, which mean Katherine and Kris don't sleep either. However I am amazed how the handle these illnesses. He is fussier and needs more attention then normal but in general they take the pain pretty well. They are amazing little critters.

I have been feeling OK. Just really tired at night, even when I nap during the day. My feet and hands are starting to hurt again. I think they are hurting again because I stopped the chemo for a few days. So the cycle is kind restarted itself.

Have a good Thurkey Day!!

Kris "The Cancer Killer" Beinder

Feeling Better and the Holidays!!

I am starting to feel better. A large part of my illness was that I was having withdrawal symptoms from steroids. The docs are trying to reduce the amount of steroids I am on and I guess they just took them down to fast. I was having shaky hands, major stomach cramps and muscle cramps. It is crazy the side effects of drugs and medicine that your body is not supposed to be on. That is why if I don't have to take meds I don't. That is why when I have a head ache, I do everything I can to avoid taking an Asprin or Advil. When I have had my surgeries and the docs give me pain killers, I avoid them unless absolutely necessary.

Alek has been falling asleep everyday on the way to daycare. It is normally when I am about five minutes from the daycare. So I have been going for a little drive around daycare so he can get at least a 20 to 30 minute nap. It is depressing to drive around and see all these people's homes. All I can think is I wish I had a home that I knew I was going to be in for a long time. I am just so sick of not being settled. It is not fun when you come home everyday and you have to think how long will we be here. Where will we go? It is just such an empty feeling. I know many of you have moved or have sold a home, but when you are forced to sell your home it just leaves a really bad taste in your mouth.

Thanksgiving is coming up. It is such a great Holiday. I love all the food and getting together with family. I really miss seeing my family from PA during this time and I miss my Grandpa. He loved Thanksgiving. I loved spending Thanksgiving with him. Eating the bird then drinking a beer and watching football. There is really nothing better then that. Spending time with family is something that we should really treasure. Some of us don't have the family that others do. I have to think of my good friend, the Skipper. Every holiday I think of him. His parents were so amazing and I can not imagine the Holidays without my parents. He has been so amazing dealing with he has gone through that I often draw of him. I love you man. The greatest thing is that Skip has carried on a tradition that his parents were apart of. He delivers food and gifts to people in need in the Foxboro area for the Holidays. He is giving back to the community as his parents did. This is what life is about. In times like we are in today, it is important to give to people in need. What are you doing this Holiday to help out people in need??? If you are not doing anything, you should!!! That is my soapbox statement for the day. I welcome your comments on this.

Thank you to the new followers that signed up. If you have not signed up as a follower please do. I LOVE to see who is reading my blog.

Got the Bug????

Well, I am feeling like crap and have been for about 4 days or so. I finally got the stomach bug that Alek and Katherine had. I have been quarantined to the guest bedroom. I have not been able to really eat anything during this time. In addition my face is totally breaking out from the chemo and steroids. It is not a pretty picture. In addition I have not been able to help or watch Alek as I don't want to get him sick. It is totally depressing. This is when I get scared as to what would happen if I get really sick again or I have to take a chemo treatment that makes me feel this way. I just want to get better and sometimes it seems that this is never going to happen. I do not want to die!!! I want to be able to live like all of you reading this blog. Feel blessed everyday that you are healthy, because without your health you have nothing. Many people understand how lucky they are and many people have no clue how lucky they are. This is one gift I have been given by being sick, I see the world much differently then most. Things that other people worry about are worries I wish I had. I do not take one thing for granite. Everything in life is precious to me. This year has been tough and the support I have received from friends, family, neighbors and strangers has been overwhelming. I really just want to be able to do for others and others have done for me. Isn't that what life is about? Treat others as you want to be treated. Helping others as you would want to be helped. Feeling for others the way you would want to be felt for. I could go on. If we all lived by these principles everyday, I think it would be a different world.

A part of my daily routine is worrying about Katherine and Alek's future without me being able to contribute. It is a tough on the male ego to not be able to be the rock/the provider in the family. Let's just hope that someday, hopefully sooner then later, that I will be back. Right now I just don't feel like myself and I am not sure what I need to get me out of the funk I am in.

The support from the People article continues with many great letters of support. I am touched everyday when Cathy and Alison stop by with the letters and the donations.

Obama Wins, Test Results and People Mag.

First, Barak Obama has won. We will see if he can deliver on a few things he promised. I hope he can reform some of the healthcare topics he discussed. I have a self vested interest in this obviously.

Second, I got my test results back today and they are similar to the past couple of months. The Prolaction levels have dropped but not significantly. They have dropped almost 100 points. This is not great but it is not bad. The question is to continue this treatment or change gears. I am starting to think that changing gears might be something to start looking into however for now I am going to continue on the Nexavar for another month. I will be getting some MRIs and PET Scans this month to see how and if the tumors are growing or if there are any new tumors. Let's keep our fingers crossed. One thing the doctor is afraid of is the side effects from the steroids I am on. These side effects include osteoporosis, diabetes, weak bones and vascular narcosis. The Vascular Narcosis is what caused me to get a hip replacement when I was on steroids while I was dying. The thought of another fake hip is a little scary, especially since I have been experiencing some pain in my real hip.

Third, a much happier and positive note. The support that came from the People Magazine article has been overwhelming. I have received tons of letters from people. It is amazing that people respond in the volume they do to an article like this. A large majority of the people sending donations and letters have or are experiencing rough times themselves. You can tell that they are salt of the earth people that were upset that we are in jeopardy of loosing our house due to my fight with cancer and the insurance company. I can not thank Alison and Cathy and the Apple Tree Farm team for organizing this event and then following it up with the article. They have given the term neighbors a whole new definition. This is why we chose a small community like Hollis, because of the close knit community.

Alek and Katherine are recovering from a stomach bug. Alek got it first and Katherine caught the bug. I am exhausted because I have had to be the caretaker. I have learned from the best (Kath and my mom). I take a lot of pride in being the caretaker because I have been taken care of so much. I would like to think I am pretty good at it. Little pat on the back for me, HA HA HA. They are both starting to feel better, but they are both tired.

That is is for now, I am looking for some more followers so if you read the blog on a consistent basis and have not signed up as a follewer please do, Please!!!

Kris "The Cancer Killer" Beinder

Palin the Scapegoat

This is a good article to read if you don't like Palin or McCain.
http://news.yahoo.com/s/politico/15073

Followers and stuff...

Thanks to all the people who have signed up as followers, 11 so far. This is very cool. Thank you!!! I appreciate it. It means a lot to me to see who is reading the blog on a consistent basis.

I am struggling with fatigue, especially in the evening time. It is very tough because this is when Alek wants to play and sometimes I just can not keep up. I just wish I had more stamina. I have to think to myself it could be much worse, but also better.

I am also mentally in a kinda state of confusion. I am bored yet there are so many things I want to do and should be doing. I need to write thank you letter to all the sponsors of the KPB Classic. I want to start cooking, backing up my photo from my PC, start working out and several things I can not even think of now. It is strange to be so bored and yet have little ambition to do anything. I just can not seem to motivate right now. I try and then I get side tracked by the TV, the Web, laundry, nap time. etc.

My biggest wish and dream would be able to help people going through what I am going through. I feel that the experience I have had is untapped. I feel I could help many people fighting and surviving cancer. I also feel that I could learn a great deal from others. I really think someday this dream will come true. I just need to get this round of my battle under control. I just hope that I can hold on long enough for cancer treatments to continue to advance as they have. I just hope I can get access to the drugs. That is what is also worrisome. I guess only time will tell. I just gots to keep on fighting.

Well my laptop battery is about to die. Got to run.

Later
Kris

People Magazine

I will be making an appearance in PEOPLE MAGAZINE tomorrow. My neighbor from Apple Tree Farm who put on the Pony/Horse ride fundraiser contacted them to inform them about the event and my struggles. They were here last week and did a photo shoot of my family and Alison (our awesome neighbor). I can not thank her enough for all her efforts. She has really gone above and beyond trying to help us. She is an angel. Her staff and riders have also been tremendous and supportive. We could not ask for better neighbors and friends. That is why it is so depressing to think that if we sell our house where we will end up. Just not fun to think about.

They are doing article on heroes that are helping out people in need in the down economy/bad times. It is a short article, but it is still very cool to be able to say that I am in people magazine. One part of the article is about the insurance company not paying for my meds. The author of the story had to call my insurance company to verify this was true. Ever since the insurance company has called me at least five times. They have offered me ideas and sources that might be able to help out. It is really funny how they react with a little pressure and exposure. It should not be this way, but the squeaky wheel gets the oil. It is so true.

Otherwise, I am doing OK. Still very tired and napping a good amount during the day. Today was a good napping day, about 3 hours. I needed it though. My hands and feet have been soar but manageable. I have a doctor's appointment next Tuesday (Nov. 11th). This will be a big day to see if the drugs are working. The waiting game is not fun. The word that I have used in the past and will use again is grinding. The thoughts of fear and anxiety just grind in your mind.

Kath has been crazy busy with work. She works several hours a night to keep up. This makes it tough on her to do most of the house work and take care of her work. This is the most frustrating thing for me, not being able to help around the house as much as I would like. She is so amazing to keep going day after day, dealing what we are dealing with. She is so strong. I don't know what I would do without my soul mate. I love you Katherine.

Alek is starting to really get his personality. He is a crazy little guy. He wants to start walking. He is standing and holding on to anything he can reach. He is walking along the couches, walls and coffee tables. It you hold is hands he will walk around the house. (As I am writing this he and Kath come walking around the corner). This is scary but also so exciting. He is constantly smiling and laughing. He is the ultimate ball of joy. He is AWESOME.

Well not much else to report here. Please feel free to join the follower area of my blog. It would be great to see who is following on a consistent basis.

Kris

I am my own Doctor!

Although sometimes I am astonished by doctors and cancer, I am never surprised at what goes on in the fight with cancer.

First, I spent all night throwing up. I had an insane stomach ache that would not go away, even after the throwing up. I think I got about an hour of sleep and the same went for Kath. The only one that slept was Alek. I am not sure if it is what I ate, the combination of what I ate or just the chemo. I think it was what I ate and the chemo. It is 5:45pm and I still feel like crap.

Second, I spoke with my doctor and was surprised that he wanted to take me off the Nexavar. He felt the drop in the Prolactin level was not enough. After numerous discussions and talking, we realized that I was not taking the right dosing. So I really pushed back and asked my doc why we would not give this some more time. The counts are going in the right direction. Yes the side-effects are bad, but most chemo has side-effects. I asked why stop taking something that is working and go to a clinical trial that is an absolute crap-shoot. After further discussion, we (more like I) decided to give this another couple weeks to see if the chemo will push the counts down some more. It is crazy to think that I am making many of the discussion for my care. It is kinda sad. I guess doctors have more then one patient, I just wish that there were answers and options that were viable. But I guess, I will do what I have done for 13 years now. Keep plugging away at this disease they call CANCER.

CANCER SUCKS!!!!!!!!!!!!

Today's Dr. Appointment

Today was a big day in determining if the chemo is working or not. Well, it is working but to what extent it not completely clear. My counts dropped from 3300 to 2800 (500 points). This is good but not great. However, it is better then staying the same or going up so in all these results are positive. I have not spoken with my doctor yet and I am not sure what he thinks about it but I would imagine I will continue to take the Nexavar for another couple weeks to a month to see if the counts continue to drop. But I must wait for the doctor to confirm this.

I am just relieved that the counts did not go up. The constant daily grind on your mind or wondering if this stuff is working can sometimes get to you, especially when you are not working. I have nothing else to fixate on.

Well look for an update tomorrow on what the big Doc said.

Life in the Fast Lane

As I sit home all day with little to do, I have some time to reflect on life maybe a little more then some of you. Although I am sure many of you are sitting in your office/cube day dreaming also. I was thinking about how quick our lives move. It seems like the KPB Classic was months ago. We have so many memories and things going on in our lives it is sometimes hard to really think about what matters in life.

What does? Right now for me it is my family and friends. You may ask shouldn't that always be what matters the most. Yes, but if you look back at high school and college you might remember that other things may have been a priority like sports, members of the opposite sex, etc. I love my family and they provide me with the joy and companionship that I need to get by on a day to day basis. When I wake up in the morning, I feel good when I look over and see my beautiful wife next to me and hear my son breathing over the baby monitor. I can not imagine not having that in a lifetime. Having the opportunity to shape and teach a little human is like no other opportunity you will get in your life. Any how quickly this happens. It seems like yesterday Alek was coming out of the womb and now he is turning into a little boy. So many parents say time goes so fast and indeed it does. It is really crazy.

My goal in this fast paced life where every one of us (friends and family) have so much going on is to find time to get together and enjoy this time together. For three years plus, Kath and I tried to get pregnant. Over that time we developed some special bonds with our friends and friend's kids. I want that same for Alek. I want my friends to be Alek's family. I want them to enjoy him as much as I enjoyed their kids. We all know if we don't time will have passed us by before we blink. I wish every month we could have a get together like the KPB Classic. Maybe we will have to organize a winter Bowling event or something like that. The KPB Bowling Classic. Sounds cool to me. I love bowling and I know many of you do too. Let me know what you guys think. It would be for fun and to get together.

That is my ramble for the day. Put a smile on your face!!!!

More Side Effects

The side effects continue!! My throat is now soar again. Eating is starting to hurt. My mouth has sores and my tongue is sensitive. The bottom line is it hurts to eat almost anything. Of course ice cream and popsicles feel good.

I am also getting blisters on my feet. I know it is kinda gross to talk about but that is what is going on. It hurts to walk now.

I know I have said this before but I will say it again. Pain is not fun. It really gets into your head and wears you down. While in pain is mentally exhausting. Even with Alek and Kath there it is tough to always stay positive. I don't like not being able to do certain things. I don't like being limited in what I can do without feeling pain.

I am very anxious to have my follow up appointment next week. I am not sure what I will do if the results are not positive. I am so hoping this drug works. I don't feel like having to travel into Boston (Dana Farber) to take part in a clinical trial. Plus, if my counts don't go down, I have to stop the chemo and wait four weeks as a cleansing period. It is very scary to think that my counts could sky rocket even higher over this period. When the Prolactin counts rise the tumors increase in size and numbers. I am just so scared, so scared.

Well it is 1:30pm and I am tired from the weekend. Alek did not feel well and did not sleep well. So I think I will take my daily nap and catch up on some sleep.

I have discovered that FACEBOOK is very cool. If you are not a member please join. Trust me you will not regret it.

Over and Out

Pain in the Hands!

Every chemo has its own side effects. Nexavar's, the drug I am on, common side effect is called hand/foot/mouth syndrome. You get these burning blisters under your skin. And yes I have them. It feels like your burnt your hands. I can not pick up anything. It hurts to get water out of the fridge. I hurts to pick up Alek. Anything involved in using your hands hurts. Typing actually hurts. So I have become totally useless around the house. Once again my stud of a wife is stepping up to almost everything around the house.

I just joined FACEBOOK. That website is pretty cool. I have connected with a bunch of H.S and College friends. You should check it out. You can post photos, chat with people, say what you are doing and find friends. It is addicting, especially for a person that is not working.

Alek has a slight fever today. Bruno is here to help me. It is tough for me to take care of him be so tired and now with my hands.

Congrats to Stan and Bridget on their adoption. I can wait to meet her.

Later Skaters

Telegraph Article

http://www.cabinet.com/apps/pbcs.dll/article?AID=2008809199992

9th Annual KPB GOLF CLASSIC

The 9th Annual KPB Golf Classic was a huge success. I want to thank everyone so much for all you support. Fundraising wise it was the best year. Every tournament is special and this was was very special. It is really cool to everyone grow and see their families grow. It seems as if the kids are starting to outnumber the adults. I don't think there was one kid at the first tournament (maybe one little Spaulding) and now there were 12 kids/babies there and Kerrie and Kim with another two on the way. In addition Stan and Bridget's new addition. Crazy!!! I can not wait until the kids are actually playing in the tournament. That will be wild.

I would also like to thank all the sponsors of the golf tourney. Without them we would not be able to raise the money we do.

Once again thank you Mom, Dad, Frank, Betty, Jason Perkins, Kathy Perkins and Sherri Calkins for helping put the raffle and food together.

Thank you all for those who helped set up the raffle and clean up.

The biggest thanks goes to my wife Katherine. She is the one who keeps the day moving and ensures the day goes right. She is a star. Baby I love you so much.

Another special thanks goes to TK sports. Every year they provide the T-Shirts. Thanks Jim Keene. Your support is greatly appreciated.

Thanks and we will see you all soon.

Additional Posts include: Newest Chemo Results and Telegraph Article.

Ponny Ride Benefit

Our neighbors just stopped by to inform us they will be holding a pony ride for my family. They have a horse farm called the Apple Tree Horse Farm. They have a riding ring and they will be holding a pony ride on September 21st. This is the day after our golf tournament. So anyone who wants to come down and take their kids for a Pony ride you are more then welcome to stop by. It is right down the road from our house.

It is an amazing gesture and it is really appreciated. We will have to drive down from Lebanon on either Saturday night or Sunday AM but we will be there.

It is Day 18 of my chemo cycle. I will see Dr. Fadul on the 16th of September to get my blood test to see if the Prolactin level drop further. I pray and hope they continue to drop. Please drop. Please.

See you all soon.
The Cancer Fighter

Tired!!!!

The Chemo is kicking in and I am starting to feel tired. I have become a professional nap taker. If I lie down I can sleep almost anytime of the day. I am also sleeping well at night since Alek is pretty much sleeping through the night.

Alek is a crazy little baby. Now I know what it means to have to babyproof your house. They get into every nook and cranny. It is truly amazing.

I am looking forward to the KPB Classic. It is one weekend away. I can not wait to see everyone.

See you there.

Back to the Blogging

I am back to the blog. Why have I have been gone this long? I guess the best excuse it being lazy. The other excuse is not having a computer for a while since we put our house on the market. Having the house on the market is almost as bad has moving your own stuff from home to home. I hate moving and by that I mean moving all your stuff from one place to another. We all know that sucks.

Well to what is going on with Kristofer Peter Beinder. First, my cancer is progressing once again. Like this is new. It is to a point that I need to something soon. The clinical trial went well but I had some serious side effects. I broke out in a major rash twice so I was dismissed from the trial. It is crazy. I find something that works and I can not use it.

The drugs that were working were Sorafnafib and Tipifarnib. We asked my doctors if I could take one of these drugs. They recommended trying to get approval for Sorafnafib. We tried to get approval from our insurance company. What a joke. They denied us from getting the drug. It is truly unreal how they deny something that was working for me. The say it is not FDA approved for my cancer. Well nothing is. Drug companies are not going to invest money in rare cancers. Whey would they. You however would think that the insurance companies would want to try to help people vs. not helping them. Right now the only thing that I can get are Clinical Trials Phase I.

A Phase I clinical trial is: Drug companies testing the toxicity of chemo drugs. They give these drugs to a certain number of people and they keep increasing the doses as they find a certain dose level is not to toxic for cancer patients. They have an idea that the drug may work but not certainty. You are basically a Guinea pig.

I will write more tomorrow regarding Alek and my recent visit to Dana Farber.

I also from this date forward will promise to write once a week in this blog. Sometimes it will be more frequent.

Tomorrow is Dave Antoniolli's bachelor party part 2. We will be golfing. I am so happy that Dave found Jess. The two of them are great together. It is awesome to see the Chief (Dave) in love. Way to go Chief!!!!

Into the Trial

Weehhh Haah, The next chapter is about to be written. I am accepted into the Clinical Trial. I will start tomorrow (4/18/08). I will then have to return to Houston one day a week for 5 weeks. That is a bit of a pain but you got to do what you got to do. I will have to be in Houston on Thursday's. That means I will fly out on Wednesday and return in the afternoon on Thursday pending any problems or side effects that may arise. If the chemo works after the first 28 days, then I only have to come back once a month. So it is just a matter of getting through the first 5 weeks. So we will see. Just another waiting game. Chemo, Chemo, Chemo.

We have met some incredible people out here. This place (MD Anderson Cancer Center) is remarkable. It is such a HUGE hospital dedicated to cancer. The people you meet are amazing people. Some are worse off then you and some are better, but the fact that you are surrounded by thousands of cancer patients puts a lot in perspective. It is scary in one way that so many people have cancer. It provides hope in that so many people have the chance to be treated and live longer lives. It is inspiring because you know you are not the only one going through this. And trust me, I have had a tough go but there are many people that may have not had as long as a battle but are worse off. That is what gives me hope and sometimes makes me cry. I know I am a complete sap, but when you have gone through what I have your emotions run at an all time high. Most of you have witnessed it. There are a bunch of people that I have seen wearing this T-Shirt and hat with a very cool logo. The logo is "CANCER SUCKS!". I got a kick out of that. We may have to make up some our own "Cancer Sucks" t-shirts for the KPB Classic. It is never to early to think about the KPB Classic. Wow, we are getting to the age where some or your kids are going to be playing. Scary!!!

Over and out.

The Beinder Man

Houston

In Houston, TX baby. The weather is really nice here. We sat out the first day and I actually got a little sun burnt. My mom has been sitting out every day. She is a sun worshipper. It has been sleep, eat, test, eat and sleep out here. I have had MRIs, CT scans, X-Rays and blood tests. It has not been relaxing but also not to hectic.

Meet with the Docs tomorrow to determine the plan. I am anxious, scared and hopeful about this meeting. I am still not feeling the greatest I have ever felt so I am a little scared to start chemo again. That is where I am right now mentally so I have to push on. I am sure the Docs will also help me figure out if I am ready for chemo yet or not. It is just scary to start chemo when you are still not 100%, but the thought of waiting is also scary. I am in a catch 22. A win win situation.

I miss Katherine and Alek really bad. I shed at least one tear a day thinking about them and especially Alek (sorry baby, I love you so much you know that). I was telling someone here in TX that he is the reason to live and push forward but that is also the scary part. I just want to be here as long as possible for him and Kath and all of you.

Well keep it real y'all

Kris

Short People Make Good Athletes

Wow it has been a long time since I posted. Sorry about that. It in not for a lack of thinking on my behalf. It is the act of being lazy and content. A quick update. My throat is much better. I am starting to eat almost anything I want. I am starting to gain some of the weight I lost back. Going to Houston next week. Marg and I leave Monday in the early morning.




This morning I was thinking about what has shaped my life and what in my aspects of growing up has given me the strength to fight this mad disease they call cancer. There were two things that came to my mind. One was the fact that I was into sports and was an athlete. The other was my size or should I say lack of size. You can laugh. We all know I am not the biggest guy in the world. I was always picked on from the early days all the way to College. I can remember many times being called every name you could think of for a short person. You name it I've heard it. I remember playing soccer in high school and the opposing team's fans would stand behind the goal and just tool on me. Can you grab the cross bar? Well they had a right to pick on me, I was short but I had something that always helped me. I was smart and I was crazy. That helped. When I was young the name calling tended to bother me more then when I was older. I guess I was used to it and I got good coaching from Mom and Dad on how to deal with it. Maggie and Bruno were great in coaching me on how to deal with it. They would say "you show them that being short does not matter by doing .........". I did show them. I think this is where a great deal of my perseverance comes from. I never let people who put me down get in the way of my goals. I always felt like I had something to prove. I always had a challenge to overcome. I never had anything given to me. It wasn't like someone said look at that Beinder kid, he is really short. He is going to be a star. No that did not happen. I had to prove myself and show people my worth. There was one thing I know is that I always gave it my best. Whether it was learning a foreign language so I could fit in. Whether it was trying to find friends after we had moved to a new town. Whether is was stepping on the ice with a bunch of Austrians without knowing German and trying to figure out what they were doing. What ever the situation was I managed to get through it and I never quit.


So in my opinion being short helped me gain the no quit attitude and the idea I could persevere through anything. The other part that I mentioned was sports. If you have ever read Lance Armstrong's book "It is not about the bike" this may sound familiar. Athletes tend to have this attitude that when they are injured or in pain, that they will just power thought it. Lance experienced the same thing. He powered through the pain, the headaches until it was so bad that he knew something was wrong. I experienced the exact same thing. I powered through the pain and the loss of vision until I knew there was something wrong when Kesten was beating me at tennis. However the point I am trying to make is that athletes have this gift of being able to move forward no matter what the circumstance are. They can always find a way to finish the game in an attempt to win. If you are down, you can not put your head down. You must keep moving the ball up the field. When you couple a small fry like myself who had all the odds against him with his size and and give him the heart of a lion, you get quite the athlete. Yes I am bragging and reliving my glory days. But I can not help to think that being an athlete, a small one, has given me a mindset that has helped me fight. I don't know what to call it, but it is almost something that you either have or don't. The great thing is all of my friends have it in one way or another. That is why we are such good friends, we all have that x-factor. We all have that competitive drive. That is the best part about our group. This bond is what has given me the stength to keep fighting.

What else is going on. Alek is great. He is growing and changing every day. It is crazy. I really am not looking forward to going to Houston. I just don't feel like going out there. I know I have to but I'd rather stay here. There is something about going for blood tests, MRIs, and doctors apointments that is just not appealilng. I guess the good thing about Houston will be the weather.

Well I am out of here. Keep it real

Kris

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

Waiting to Go Home

It is 2AM in Houston. Today we just found out that I would be able to go home. The thought of seeing ALEK is like no other. I am so excited and so tired that I can not sleep. I have so much on my mind, it feels like my brain is lost in space. It really does. Thoughts come and go, go and come. Ideas pop in, stay for a while then leave. How will the trip be back home? Logistics, friends, finances, work, work, our home. What will the next hours, days, months, years bring? What will they bring? How long can I last? The questions could go on on on. I do all I kind to slow the race in my head, yet can not do it. Wuuuusaaahh, I say (A clip from the movie BADBOYS. Relax in otherwords.

I will and must are words that I and you must use everyday. I know and must.......

I know I must try to sleep and I will fall asleep. Good night. See you soon.

My First Blog

I wanted to start a Blog for a awhile. I figured that this would be a good time. This will allow me to keep everyone posted and allow me to share my thoughts. It will also give my friends and family a way to share their feelings and thoughts.
Feel free to write anything you want from stories, poems, jokes, prayers, thoughts.
So I am not sure where to go from here, but to "Get it started!!!"

MAY A FAITHUL FRIEND BE THE MEDICINE OF LIFE