The Good, The Bad, The Ugly

Today is the day after my second treatment. So there is good and bad news. Which one first. I guess most people take the bad first.

I woke up and took Alek down stairs to play as Kath caught a couple extra minutes of sleep. All of a sudden I started to experience extreme pain in my back and I am still experiencing now. It is a really piercing pain and it is not going away. It is not as severe right now as it was in the morning. Of course that is due to the morphine I took. I have been experiencing this pain for a few weeks but it was mild and it would come and go. I can only predict it is a new or old tumor that is acting up. All I can say that back pain is one of the worst pains as many of you know. So we will see how it feels today and over the weekend. Most likely an MRI will have to be done to see if there is something causing this.

The Good news is that I am not feeling as bad as I did after the first treatment. I am not throwing up, nor do I have the diarrhea (sorry I just like saying that work. Diarrhea Cha Cha Cha. You all know the sone. When your sliding into first and your pants begin to burst ________. Fill in the blank). This could change any minute but as of right now that is the story.

I also wanted to let you know I have started another blog. Yes another one. It is titled, Alek my LG. It is a blog where I will be letting Alek know about his dad.

Sorry for the boring posts lately. I just have been focusing on keeping you updated.

Over and out Big Buddy
KPB

First Treatment

My first treatment was Monday. Like most chemos the side effect were normal. Throwing up, try heaving and diarrhea I actually spent all Monday night throwing in up and running to the bathroom. I felt like absolute sh*^. I guess that is what happens when they put poison in your body. Then I spent all day Tuesday getting meds and liquids to combat the side effects. With chemo you never know which way it is going to go for future treatments. Is is going to get worse or better? Lets hope for the latter. Lets hope it works. I keep saying to myself if it works all the pain and feeling awful is worth it. If it give me one more day with my family and friends it is worth it. So please work.

Facebook rocks. For all of you who read this blog who are on facebook. I would like to thank you for your thoughts and words of inspiration. Everyday I go on and it is great to see old time friends sending me love. I love it. You all help me get through the day. Thanks so much and keep those post coming.

Otherwise there is not much to say really. I am sure all of you in the Northeast are as sick of the weather as I am. Go away winter, Go away.

I need to get a voice recorder because when I am away from the computer I have these very deep and intense thought and when I get to the computer I can not remember them. It sucks. I want to share these thoughts with you. It will be funny when I get it because some of them come at night. I can just see it now. Me talking in the middle of the night and Kath waking up and looking over at me and being like what are you doing?? Funny huh. I am sure some of you can see that picture.

It is funny it feels like my vacation was months ago already. I need and want another one. It is going to be a while until that happens. If the summer gets here sooner than later that would help. I HATE THE COLD!!!!

Out ah heeeeere.
The B Man. Large and in charge of fighting the fight. Peace out!

Back from FL and back to Boston

Well, I am currently sitting in a bed in the Dana Farber Cancer Center. I am getting some tests for the clinical trial I am about to start on Monday. I got a call from Dana Farber while on vacation and they stated they had a spot open for when I get back or I would have to wait six weeks. So I jumped on it. We got back Tuesday and I had to be down in Boston on Wednesday. I had hoped to have a few days to decompose from the vacation, but beggars can not be choosers. So I will be here in Boston every Monday and Thursday. Mondays will be 10 hours days and Thursday's will be 2 hours days. This is one of the few trials available to me so let's hope it works.

Vacation was great. The weather was great. The company was great. We went to Disney a couple days. We went to Magic Kingdom and the Animal Kingdom. Alek enjoyed both of them. He went on a couple rides and really loved them. He really likes animals, birds and fish. We also went to Discovery Cove to swim with the Dolphins, which was very very cool. They had this aviary with all these exotic birds. They gave you this bird food you could hold in your hand. These exotic birds would land on you hand and eat the food. I thought this was cool, but Alek thought it was cool also. He was laughing and trying to touch the birds. It was awesome to see. We also went to SeaWorld. I really enjoyed this. We saw a few shows. Alek was really into the Dolphin show because there was constant action. It is amazing to see their little brains working. We really had a great time and I hope to return in a few years.

I wanted to thank my parents for being so helpful and supportive in Florida and also in general. Your help and support is truly appreciated. We know it is not easy but we love you and thank you for all you have done and do.

Kris

Party Weekend

This weekend was Alek's B-day party and we had a great time. Family and friends enjoyed an afternoon of food, cake and spirits. My spirit was lifted although I was not feeling the greatest the past couple of days. Today is the first day that I woke up and did not feel that I had to rush back to bed. This is a good thing since we are off to Disney in two days. I was, and still am a little scared about going down there with how I been feeling. However if today is an indication as how things are moving, I will be fine. I think the sun and warm weather alone will be great. It will also be great for Katherine and my mom to get some time away from work. They both need it. Heck everyone needs time away from work every once in a while. This is the first week long winter vacation Kath and I are taking since we met (8 plus years ago).

My friend Nate has staying with us since Thursday. He is from San Fransisco. I have not seen him for at least 5 plus years. It has been great having him here. He has been helping out around the house and taking care of Alek. It has allowed Kath and I to relax a little and not be as hectic or stressed out. Nate: Thanks for helping out and visiting, we appreciate it.

While I am shouting out thanks. To all my family and friends. Thanks for coming to Alek's B-Day party and thanks for the gifts. Thanks for helping set up and clean up. Thanks for the help and love. It was a great time.

There is not much to update on the health front except that it is just going to be a waiting game to see when I can get in this trial. I think within the next 2 to 4 weeks I should know. Although I am hoping that this will be the magic bullet, I am not looking forward to it. But it is something I have to try. I am hoping there are a few bullets out there, we just need to find the one that can kill my cancer, before it kills me.

Well I better run, actually get going is a better way to put it. If I ran, I would be in trouble. This body does not run to well anymore. I am a 35 year old in a 63 year old body.

Over and out.
The B Man

Here come the emotions

Sunday afternoon:  Betty and Frank (Kath's parents) were down for the day and they were bringing me back to my parents for my final two radiation treatments on Monday and Tuesday As the time came for me to leave I finally lost it.   I broke down in tears and did not want to go. I think it was the symbolism of me leaving Alek and Kath that made me loose it.   I really did not want to leave my house.   It was almost as if I was a child and did not want to leave my parents behind.  I have never been so frightened in my life, never.   I am so afraid of dying.   I am so f&^ing scared.   I want to live long enough for Alek to remember me.   I want him to know me.   I want him to know what I like and what I stand for.  I want him to know I love sports.   I want him to know what type of Dad I am.  I want him to know how much I love him and how much joy he brings to my life.   I want to see him get to an age where he will understand what is happening to his dad.   When I think about people asking him, where is your dad and him saying he died, it really freaks me out.   I know that this fight is not over.   I just did not want to deal with this as my son is turning a year old.   This should be the best day of my life.   My son is turning one, but yet I am dragged down by these thoughts of death that I try to push away but they just keep coming.   The mind is powerful.  You all know this and I know this.   It is tough to turn these emotions off once they start.   I have been crying on and off all day.   I am just really struggling with the UP AND DOWNS of my life.   I wish the downs were less extreme then they are.  

Then there is Katherine.  Honestly the strongest women I know.   I really do not know how she does it.   I try to put myself in her shoes and I know I could not do what she does.   A dying husband, a one year old son, a job with a long commute, having to cook and clean, a house that we have to sell this spring, the idea of where we are going to end up and the financial burden we face when my disability ends.   She is doing everything right now.   With me not feeling good, she is carrying the load.   I DO NOT KNOW HOW SHE DOES IT.  I love her so much and all I want for her is to be able to enjoy life with Alek and myself.   I hate the burden I bring to her life.   I feel extreme pain in my heart for her.   I just want her life to be easier.   The reality of it all is that it is most likely not going to get easier if I can get on a clinical trial or if I get real sick.   I love her so much.   I ask you all to please take care of her if I were to leave this world, please.   

OK enough.   We are going to Disney next week.   February 11th through the 17th.   We are going with my parents.   I am a little scared about traveling with Alek but I see so many people doing it.   If they can we can.   It should be great to get away and get some sun and watch Alek's eyes as he sees a whole new world.  

Alek will turn one tomorrow.   Very cool.   I can't wait to see him on Tuesday.

Thank you everyone for calling and emailing.   I really do appreciate it.   It lifts my spirits even if it may not sound it.   It helps me get through the day.   I love you all.

Also, thanks to all my followers.  I know there are more people who read the blog that are not followers.  Please sign up.   Also please leave comments.   I love reading them.

Radation And Stuff

So, I am in the middle of my radiation treatments. I was thinking of a way to describe to someone what is going on with my health. This is the analogy I thought of: Right now we are plugging up holes in the dam. We are not fixing the main problem (the cancer). If we can not fix the problem (finding a treatment that works) the dam is going to keep breaking and it will be impossible to keeping fixing all the holes (tumors) that keep opening (growing). It actually makes a lot of sense for me and for many people who fight cancer. The problem is that the tumors keep popping up and causing pain, but you never get the time to treat the disease. It is getting very frustrating because up to now I have never felt the crunch as I am feeling today. I have always known that the cancer could defeat me, I just never thought that this fear would be happening right now. I expected at least another five years before I faced some of the issues I am facing today. We are talking choosing quality of life over treatment. It is real scary. I am so scared that I am really having a tough time being emotional about it. It is almost like I have no emotions. I thought when this day came I would be crying all day long but I really have yet to cry. This really shocks me especially since I am so emotional. I guess I am in game mode where I am staring death in the face and I am telling it to bring it on. I am thinking it just is not my time and it is not going to happen. I don't think I am accepting the fact that my health is as bad as it is. I guess I have been here before and I think I can keep winning. Is there really any other choice? I am not going to die, I will have to be defeated by being dragged through the mud on my way to the grave. It is not my time. It is not my time. It is not my time. I have too much to see and do and watch. All of those have a lot to do with Alek. I need more time with him. He needs more time with me. Kath and I need to do some things. So whatever Voodoo, prayers, songs any of you have let them loose. I can use all the help I can get.

Well that was tiring. I have a few days of radiation left. I will be home for the weekend and will be able to hang out with Alek and Kath. That will be fun. My wife has been under the gun with work and dealing with Alek by herself. She is truly amazing and is in her own league. I love her and miss her. If you have a chance, please tell her how amazing you think she is.

Still working on Disney Plans. It is not easy to figure out where to stay. If anyone has any ideas of where to stay let me know. We are thinking in the park but with short notice and it being peak season it is very very very expensive to stay at the park. So looking for help, email me at beinder17@yahoo.com

Thanks
Kris

Radiation Plans!

Ok. I will be starting radiation on Wednesday. They will be doing 5 treatments which means I will be done next Tuesday. This is not bad. They will be radiating my left hip to try to kill the tumors in that area.

Dana Farber has communicated to me that I will be able to get into the trial in about 5 weeks. This is also good news as it allows me to do the radiation and recoup for the trial.

I am also considering going on a vacation with my family and my parents. We are thinking about going to Disney. This may be my first and last opportunity to travel to Disney with Alek, so why not do it. With my cancer being so aggressive at this point, we are not sure if I will be able to travel months down the road. We are going to seize the day and live life.

At some point in the next few days/weeks I will try to open up to how I am feeling. Right now I am just not able to deal with my emotions. I have shut down and am not feeling anything. I think I am in complete denial to what is happening to me. So everyone around me, I am sorry that I have become this way. I will try to communicate better.

I also wanted to thank all my friends who have been calling and visiting me. It really helps me get through the day/week. I love seeing you and it confirms how tight of a family we are. Let's all plan many get togethers and make the best of our friendships. I love you all and would not be able to do it without you.

Talk to you soon
Kris