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I am just sitting here on Thursday morning with my beautiful mom watching the movie "A Few Good Men." When a movie like this is on you just have to watch it. I can always watch Sport Center later on-- to see how Lance is doing in Tour de France. Go Lance!!

Actually, I am not typing this --my mom is because my motor skills in the right hand are very slow and weak therefore I am not able to type and it has become very frustrating so that is one reason why I have not updated the blog or Facebook.

I can tell you it is not fun not having your legs. In truth, my freedom has been taken away. The only time I am able to get out of the house is on the weekend when we rent a handicap van. It gives you a new respect for people with disabilities especially people who are paralysed that is for sure.

One of the most frustrating things is not being able to get down on the ground and play with Alek. Alek is blossoming everyday and it is heart breaking to be limited to watching it from a wheelchair. Although I must say I love when he runs into my room and greets me with Da Da Da Da each morning and in the afternoons when he comes home from daycare.

It is amazing how joyful it is having a little one around like Alek who doesn't fully comprehend what is happening. He keeps me smiling and laughing.

Right now, a nurse has arrived so I promise I will post more later-- this is how my days go. I sleep, the nurses come, a friend or family visits-- it is like a JOB!!

LOVE YOU ALL
Kris

Wow, It has been awhile since I have written!

Well alot has gone on since my last post and most of you know but for those that don't I will give you a quick update.

The weirdest thing was going from being able walk, to walking with a cane, to walking with assistance, to not being able to walk. This accrued from Friday to Sunday. On Monday morning, ironically, I had a appt. with my doctor. He immediately admitted me so I could an MRI to see if they could do last minute surgery to save my legs. The plan was to get me on the schedule the next day (#3 surgery of the day). However that night something was going on in my body because I was screaming with pain so they moved me up to first slot. They did the surgery. I came to with my legs completely numb and no feeling in my lower abdomen. I was paralyzed from chest down. I was very disappointed. Well, maybe disappointed is a little week of a work. Maybe a better word is shocked or even in shock. We always knew this was a high possibility but I guess I was in denial that it would ever happen. I will talk more about my feelings later.

After the surgery came Rehab at St. Joesph's in Nashua. After being in Dartmouth for a week I was sent of to rehab for a two weeks. In rehab they worked on my strength and assessing my capabilities. They basically needed to find out how I was going to get in and out of bed to the wheelchair. I tried the slide board many times and it worked it just took several people and it was very tiring. So they ended up going with this thing called a Hoyer lift. These life are hydraulic lifts that are very easy to use and what we are using to get me in an out of bed right now. My family and Kath's are experts at using it now. Come on down and try your shot at the Hoyer today. So after 2 weeks at rehab they sent me home Friday May 22nd (I think)


Then I had a week to adapt to being at home before the big party, which I will write a separate blog about since it deserves it for sure. All I can say it was a good week at home and an amazing weekend. Thank you EVERYBODY. I MEAN EVERYBODY.


Since then there have been some great weekends and fun visits. I am really really frustrated to be in a wheelchair. It is really tough on you mentally and physically In general I am doing OK. I am very tired and am sleeping a great deal.

I will be trying to update the blog with some more posts over the next couple weeks with what is going on and what has gone on. Thanks for your patience. I love you all.

P.S Pardon an spelling or grammatical errors.

2 to 3

Once again it has been a long time since my last post. The reason why is I really had no news. The saying "No news is good news" does not ring true in this situation. I met with my doctors from Dana Farber on Monday. I was there to have a CT scan of all the areas the cancer has been. Well I will get right to the point. The tumors are growing in size and numbers. The spinal cord is starting to be pushed on by the tumors in the spine. The tumors are also growing into the soft tissue of the spinal cord. This creates massive amounts of pain and loss of strength to my limbs, especially my legs. My legs are very weak and I am having trouble walking. I am going to need a wheel chair for any time that I have to walk long distances. In Addition, the CT scan showed that the tumors in my liver have grown significantly and in turn my liver has expanded. The tumor growth is effecting my liver function and it will continue to get worse. What this means to me is that I will get very tired and have to sleep a lot. The only one positive is that if my liver is the main factor in my death, I will have a very peaceful death. So speaking of death. With all this going on and no treatment options I am dying and I only have 2 to 3 months left. Yes, I can not believe it either. This has been said many times but this time I am pretty sure it is the last. The fact that I am having trouble walking, I am in massive amounts of pain, my prolactin counts are extremely high and my liver has expanded in size are symptoms that have never been so severe. I wish it was different. I really do. I am so scarred. I am however more scared for Katherine. I worry every minute about her and Alek. I am worried how she will handle it. She has been and continues to be such a rock. I am worried that when the times comes she will completely break down. I know I have asked this and I will continue to until the day I die. Please take care of Kath and Alek for the rest of their lives. They will need you. I also have thought that maybe it is good that I die now for Alek. I think if I died when Alek was of an age where he truly understood death that it would be extremely traumatic for him. Maybe that is a just an excuse and a way of convincing my self that it is OK to die. The truth is I would rather live longer and have more time with him. Are you kidding, he is so amazing and brings so much joy to my life in a time where I could easily go into a deep hole and never come out. I also thank all of you for being there for me in these times. I am SO SO SO LUCKY to have the support group I have. I can not imagine having to go through this without you guys. The sad thing is not many people have the team that I do. For this I am thankful.

As you know I love to hear from you guys to PLEASE, make a comment.

I love you all,
Kris

The Word!!!

Hello All,

I have been avoiding my blog. It is kinda like avoiding the truth. Well the truth of the matter is that I am not doing well. My cancer is progressing and it seems as if nothing can stop it. My counts are increasing at a rapid pace and they are at a very high level. I have also had scans and they show the the tumors in my spine continue to grow. The are growing into spaces and areas that are causing the pain in my back and shoulders. I am back on pain killers to help alleviate the pain. The pain killers work but there are always times when the pain wins and the pain is intolerable. Right now my goal is simply to keep the pain under control. I have come to the conclusion that from this point forward the pain most likely will not go away, I just have to deal with it and control it as much as possible.

I have spoken with my docs regarding my future. As of right now there does not seem to be much out there in terms of treatments. If this treatment does not work, the doctors have given me a time frame they expect me to live. That time frame is 3 to 9 months. Yes, they have given me times frames before but although I am trying to be positive, the way the cancer is growing in my body and the pain I am experiencing the signs do not look good. I wish I could sit here and tell you it was different but I can not. I have fought my fight and I will fight to the bitter end, I just want you to realize that this is what is going on. This is very serious and of course scary as I don't know what will happen. I am tired of being on trials and treatments that kick my ass and there are no results. It is tiring mentally and physically. I want to enjoy the time I have left. I want to enjoy the summer and do things that I have always wanted to do. I don't want to die in the hospital with an IV in my arm. I am amazed at myself that I can talk about dying so easily. I guess I have stared death in the face so many times, the thought does not bother me. I have lived way beyond my expectations. I have accomplished more then I expected I would when I was diagnosed. I have built an army of friends that no one can ever take from me. I have been lucky to have seen as much of the world I have seen. LAST BUT NOT LEAST I HAVE EXPERIENCED LOVE AND A BOND WITH MY FAMILY THAT IS OUT OF THIS WORLD. For that I am happy. Kath and Alek have given me a gift that I am so lucky to have experienced. You know the cheesy line from "Jerry McGuire", you complete me. Well Alek and Katherine, they "complete me". They do. Having the experience of being a father is only something experienced by parents. I am happy to have become part of that club. The club of parenthood. I just want to experience this as long as I can without suffering. I love you all and would love to spend as much time as I can with you over the next few months.

Love you all
Kris "The Cancer Fighter" Beinder

Really Bad Weekend

So I was pretty much strapped into my bed this weekend, especially Friday and Saturday. I received my treatment on Thursday and as I woke up Friday I was not feeling well. As the day went along I started to feel worse and worse. The pain level was increasing in strength and frequency. The pain was starting to win the internal fight and I was not reaping the benefits in any way. The pain was having a hay day with me. Let's shoot a boat load of pain into his tricep. OK let's do that again. That worked. OK, now let's change it to the other side. HA HA HA. He is squirming. And in deed I was. By the time Saturday came along (the worst day) I was a statue in my bed. I did not move for much. One reason I moved was to drink water (often to take more pain meds), the other was to get up to puke or go the bathroom. I can tell you I was pretty well medicated. Katherine asked me if I remembered something she said, and I had no clue. She said it best "You lost a day." My mom came down Friday afternoon and stayed until Sunday, which helped, Katherine and Alek. She was able to take care of me at points when Kath was busy and then she able to do some things for Kath, so Kath could take care or me. Also between the two of them, they were able to take care of Alek. Trust me I did not have to worry about Alek being taken care of. HA HA HA.

Right now I am in the Dana Farber as we speak. As I type it looks like I am going to be treated today. So we will see how the next two days go.

Kris

Treatment??????

Well I had to take another week off due to my platelet count being down. The counts are actually still not at a level yet where I can get treatment. The doctor at Dana Farber went and asked the Drug company running the Clinical Trial if they could make an exception for me to start the second cycle of the trial. We had a blood test of the Prolactin taken and the results were not positive or negative so we really want to try a second cycle. That is going to start tomorrow (April 2nd).

I also have had some additional pain in my back, spine and shoulders. I was also experiencing some numbness in my hands and arms. They decided they need to do an MRI because numbness and tingling in the arms is not good. Well that was the case. The tumors in my upper back are continuing to grow into the bones and around the spinal cord. This is not good. They are not sure if they can radiate this area since they have radiated there several times before. Surgery is also not an option because there are too many tumors and they could not remove them in one very extensive surgery. So right now we have to do the second cycle of the clinical trial and see if any more options arise in the mean time.

Other than that I have not been motivated to do much. I sleep and I do it well. I am very bored and can not wait for nice weather to arrive so I can go for a walk and sit outside during the day.

Alek is growing and changing everyday. He is starting to say some words and is really starting to become a toddler. He is testing his powers for sure. He is great.

Well I will keep in touch.
Kris

Week off coming to an End

Well I am just finishing up my week off from chemo. I must say it was really nice not having to drive into Boston twice during the week. It was also nice not having to spend 1o plus hours in Boston twice a day. I am not sure if I feel as rested as I should but I do feel some what rejuvenated (to an extent). It is tough to feel rejuvenated because rejuvenated often goes along with words like energized and ready for the next steps. I don't feel energized to get chemo. I mean who loves chemo. The only people who love chemo are the cancer patients that know their chemo is working. Right now I am not one of those cancer patients. I hope to be but it may take another month to truly know if the chemo is working. Let us cross or fingers.

Alek is really starting to talk more. He is really using Mama and Dada more often. He also just added Bye Bye to his 3 word vocabulary. It is pretty cool to hear them start to speak, especially when he said "bye bye Dada" the other day. That was a special moment.

Other then that there is not much going on. I am starting my chemo on Monday again. So I will update you if I hear anything else.

Over and out.
Kris

End of Cycle One

I ended my treatments for my first cycle on Friday. Now I have a week off and then start up again next week. The good thing is then second cycle does not have any 10 hour days. They are all 3 to 5 hours depending on blood counts. I have not been feeling the greatest lately. I have been tired and nausea. I have just been feeling blahhh. The one thing that will be very interesting to see is what the Prolactin level will be on Monday. Like stated in earlier blogs, this will give us an indication if the drug is working.

Otherwise I have been down mentally. I kind of feel like I am on an Island by myself. I have been feeling like I am the only one fighting this fight. In reality I am but in reality I have a huge supporting cast that is helping me fight this fight. I don't know why I feel the way I am feeling I just do sometimes. I guess sometimes I just get tired of feeling like crap on a daily basis. I am tired of waking up tired. It just wears you down when you are already worn down. It is also depressing not being able to do what regular people do. I want to go Skiing. I want to go to the gym. I want to play soccer. I don't want to be stuck in my house. I know that Kath feels the same. She wishes we could do more things but with the way I have been feeling lately it is just impossible to make plans to do something. We just don't know how I will feel that day. We also cannot do many physical activities like hiking, walking, swimming and more. It is just one of those things that come along with having cancer and a hip replacement. I also wish that I could get in better shape, I have been saying this for years but I never seem to be able to find the time and the energy to work out. I am sick of getting tired after walking through the mall. Well I am sorry to bore you with many things you already know. It is just the thoughts and emotions I am feeling right now.

I spent the weekend with my Parents while Kath spent the weekend with hers. The reason is I had to be at Dana Farber on Friday and Saturday. We had a good time and I appreciate the support my Dad has given me through the first treatment cycle. It has not been easy but I love him and I know he loves me. Thanks Dad.

I missed Alek and Kath. Alek got his first hair cut, kind of. The only hairs that were cut were on the back of his head near his neck. If we did not cut it he would have had a mullet soon.

Well got to go get some snooze time.
Later Skaters
Kris

Treatment Update

So after a beautiful weekend, winter came back with a thunder this morning. I was due to start my 3rd week of treatments. However the weather was just not cooperating. My dad was on the road for 2 hours plus and he had not even made it to my house so I decided it would be best to cancel versus going into Boston with this type of weather. I felt really bad for my dad that he had to drive that far and then turn around. Sorry dad. I made a big mistake of not checking the weather. I just assumed that with the weather being so nice it would not go from 60 to a major snow storm. I guess I forgot we lived in New England. So now my treatment will be Tuesday and Friday this week. Then I will have next week off. That is how this cycle works. A cycle is a 28 day period of treatments. My cycle is 3 weeks of treatments then one week off.

Otherwise I am feeling OK. The side effects don't seem as bad as they were in the beginning. However, I know that can change each treatment, but for now I am pleased with how I am reacting to the chemo. At the start of the second cycle I will also find out, to some degree, how the treatment is working by testing the Prolactin. We most likely will have to wait untill the end of the second cycle to really see if it is working but there may be some indication of how it is working after the first cycle. Let's hope for the best.

Alek has been doing OK. He is still battling colds and ear aches. I feel so bad for him. I am hoping this will come to an end soon as the weather gets better. He is still my little guy and I love him so much. He is also a really funny guy. Sometimes the things he does put me into hysterics. Sometimes the things he does drive me crazy, but I guess that is what parenting is all about. No one said it was easy. I just wish I had more energy to really play with him. I can get down and play with him for a while, but then either the pain or fatigue hits me and I have to take a break. I hate that, but to him I am "Dada" and hearing those words come out of his mouth is the best thing in the world.

Yesterday, I spoke to my friend Eric, who I met at the LIVESTRONG summit. Every year he runs 33 miles to raise money for various cancer organizations. He has informed me that he will be running for me this year. I am deeply honored and thankful for this gesture. Eric is a testicular cancer survivor and he is in remission. He dedicates his life to his family and friends. He is an amazing person and a great friend. I will be posting more information about the run in the next coming weeks. Please keep an eye out for this. Thanks ERIC!!! Love you like a brother!!

Kris

The Power of Drugs

OK, I have been taken Morphine for the past couple of days to help my extreme pain in my back. Pain Killers are truly an amazing drug. For one they stop pain. Pain, simply put, SUCKS!!!!. I know I have said this in past post, but I will say it again. Pain is so mentally exhausting and takes control of your mind. Any thought you have fall away and the pain takes over. It blocks your ability to function as a regular human being. You try to read, watch TV and sleep but the pain is still there. Hence the importance of Pain Killers. Even though I hate taking them because of their side effects I need them to function. I think I hate them because I hate feeling dependent on them. I think they rule my world and I hate that hanging over my head. I also think that since I was in an almost coma like state for two year and being on the strongest pain killers the thought of going back on them brings me back to those times. These two years were not fun, actually the worst two years of my life and I am scared to go back there especially with Alek and Kath in my life. I would hate for them to see me that way. All of you who saw me know exactly why.

Well I had to get another blood transfusion today because the treatment is kicking my ass. I can only hope this is a good sign that the drug is working since is affecting my blood counts so hard. The doctors say that this sometimes will happen. Strong side effects often mean the drug is working. This is not science or does it have medical proof. It is like a wife's tail. Let's hope those wives are right. They are most of the time. At least mine is (ha ha ha). I also had an MRI to rule out the spinal cord is not being compromised and is not the source of the pain. The results were positive; however there are still large tumors at the top and bottom of the spine that could be causing the pain and are dangerous. I am hoping I don't need further radiation or surgery and can continue on this trial to see if it works. My docs in Dartmouth will review the MRI and give me their opinion. For now we go forward with the trial until further side effects or pain stops me from doing so. Thank to everyone who had offered rides and helped me get down to Dana Farber including my dad (Boris) and Jack Walsh. Cathy, Kathy and Marilyn I look forward to you helping me the next couple of weeks.

I love you all and can't wait to see you in the spring as it become more fun to get together. Easier also.

Kris "The Crazy" Austrian
Auf Wieder Sehen

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

FREEEEEDDOOMMM!! I am out!!!

I got out of the Hospital yesterday afternoon. I feel like a new man. It sure give you a lift not being in the same bed, room, eating the same awful food, blaaahhhhh.

The pain is pretty much controlled for now. That can change any moment but for now it is not that bad and I can definitely deal with it. I am sorry if there are a bunch of spelling and grammatical errors in the last couple blogs. The drugs have made me a little loopy and my brain is not at full strength now, not that it ever was. My short term memory is not that great either so again if I repeat my self or ask you the same question I did yesterday I apologize.

It was great to see Katherine and Alek. They bring a great deal of joy to my life. Just hearing Alek's talk in his own language, laugh and giggle brings a huge smile to my face. I think those sounds will be forever ingrained in our memories. At least I hope they will. It is just really frustrating that I can not help out at all. I am just so depleted of energy and my back and legs are extremely sore and in pain. I am really afraid I would drop Alek. But at least I can be around him and have him sit on my lap.

I am really anxious to get out and do something now, but Kath is doing a good job keeping me grounded. This is what I always do when I get out of the Hospital, I thing I am a teenager and want to get out and then end up almost passing out again. So maybe tomorrow.

Well please feel to ask me any questions you have in the comment area and I will answer them. I have several appointments on Monday so I will update you Monday evening. Right now I am trying to get Red Sox tickets. That is most likely not going to happen because I don't have the patience or stamina to sit in front of the computer all day.

Over and Out.
K.P.B #17

Friday's Update

Wow, a lot of posts this week.  That is what happens when you have WI-FI in a hospital and you have a laptop.  

First mentally I am not in the best state of mind.   I am trying to be positive about what options we may have out there.   However these options/choices are simply like a normal every day guy shooting darts.   You just don't know where that dart is going.   Right now I don't know where I am going.  We know that the cancer is very aggressive now and is coming up in areas that they never imagined and this is obviously very bad and not expected.   The question quickly becomes who much longer can I go through this or how long can my body go through this.  I really don't know.  I can not even think about it right now.   Sorry back to facts.

The orthopedic surgeon came by last night around 6pm.  Yeah I waited all day just to see him at 6pm.   As you can tell, I am a little bitter about that.   He really thinks that I should have the hip area radiated.   There is a tumor the size of a robin's egg in the hip that could be causing the pain.   It it right on top of the hip.   So now it is a matter of getting the docs on the same page, because the radiologist said he did not think it would be worth it to radiate.    I would imagine that once I can speak with the radiologist we could get started pretty quick.   That should alleviate the pain and then I can decide when to start the clinical trial.   I just have to see how much longer they can delay me getting in the trial.   

One thing I can not even start to address is my thoughts of losing Katherine and Alek.   I think I have gone into shock when it comes to this topic.   I don't think I am even able to tap the emotions I have for this subject.    It is way to scary and depressing to even broach.   So for now I will leave it as my wife is the most incredible person for dealing with this.   She is raising a child all by her self right now and it does not look like I will be able to help much over the next couple of weeks/months.   I don't know how she will do it, I just know she will.   I love her so much.    Then there is Alek.   Since last Thursday I have only seen the LG (Little Guy) for a few hours.   I hope I will get to see and hug him today.   

I feel like I have gone on way to long again.   Sorry!! I will post an update later if I speak with the Radiologist.

Peace to the Peeps

The Beinder Man

Lacking Information

Well, it is early Thursday A.M (7:55am) and I still have not idea what the plan is.   One thing that is new is that I have some more new tumors on my lower spinal area and in my upper legs.   Year more new tumors.   This is the really bad news.   Tumors just keep popping up and my counts are very high. (4300 Prolactin)   So the options I have have to be heavily weighed. 

I think the Orthopedic doctors are planning on doing something.   I am not sure if it is a full hip replacement or just a surgery to clean out the tumors in the leg and get rid of the pain.   I am not sure.

One thing I do know is next time I or you go to the hospital I recommend you bring your own toilet paper.   I don't have to get into details for you to figure this out.   Soft tissues vs fine sand paper.   Not rocket science.

I also have a room mate and have not been sleeping well.   He sleeps all day and watches TV all night.  They gave me ear plugs last night because his TV was so loud.   He does not even watch the TV.   It is just background noise.    I have my name in for a single but I am not holding my breath on that one.

I will keep you up to date later today or tomorrow.   Sorry if I have any spelling or grammar mistakes.   My ability to focus on these drugs is not great.   

Outa Here

B

Back in the Hospital!!

Not sure where to start on this post.  I guess first things first.   I am in the hospital up in Dartmouth.   I have been here since Monday afternoon.   Yeah I went from one hospital to the other.   Hospital jumping.   Not quite as fun as "Bar Jumping".   

They have managed to get the pain to a point were I can tolerate it.   I have not had the level of pain I was in for a long long time.    Not fun, not fun at all.   I forget how pain just engulfs your whole personality and you become the biggest bear/grouch in the world.   So I am sorry to those around me if I was a pain in the bum.

Since being here (at Dartmouth) I have only seen a few docs.   There were able to do an MRI, which is going to tell us what is  or is not going on.   I am not sure what to think.   I just want to find out so we can make a game plan.   I need to get some type of treatment fast because my Prolactin counts are rising fast and I need to do something sooner then later.   I am not sure what will happen if I need to get my hip replaced if in deed it is vascular necrosis.    I guess you have to try to look at it with the glass is half full mentality.   If it is a vascular necrosis, it is better then tumors in the hip.   I am hoping the Docs come by soon so I can update you.

I did speak to the Docs at Dana Farber and they are willing to try to keep a spot open on the Clinical trial.   So that is still an option.   They have been really nice and reactive to any questions and help we need.

So for now it is just a waiting game.   I am just on the WWW giving myself pain meds as needed.   I miss Kath and Alek.   It seems like forever that I have seen them, especially Alek since he was not able to visit me.   It has almost been a week.   I hope I am better for his B-Day party.   

I will write later once I speak with the Docs.   I love you all.

More Bad News

I woke up late last night with extreme pain to my hip. I could not sleep at all. My whole left leg is in extreme pain. It feels like a pinched nerve. Most likely it is the tumor in my lower spine or it is vasular neucrosis, which is what I had in my other hip that made me have to get a hip replacement. I am going to be trying to get up to Dartmouth to see if they can figure out what is going on. This most likely means another few days away from Alek and Katherine.

Right now I am in constant pain and I really can not see straight so I better stop writing.

Updates to come later.

Not so Fast!!!

Well, the Kris Beinder Express is slowing down. I just go home from the hospital. I had to go the Emergency room Thursday around mid-night. I was later admitted to the ICU early Friday morning.

Kath and I woke up to Alek and I felt really sick. I tried to make it to the bathroom but ended passing out for several minutes. Katherine had to call 911. She was not sure if I was breathing. As the 911 operator was giving Kath instructions for CPR I came to. Then I was off the the hospital.

It turns out that my blood pressure was extremely low and all my blood counts were very low. In the words of the doctor, if you were not so young these level would be a matter of life and death. Due to this I ended up needing to get a blood transfusion and stay in the ICU for a few days having my heart and blood pressure monitored every hour.

I just got out this evening. They are still not positive at what caused my counts to get so out of whack and my blood pressure to drop so low. I need to schedule an appointment with Dr. Fadul some time this week for him to do an evaluation. It could be that all the chemo, radiation, along with the stomach bug and bronchitis just did a number on my body. Another reason could be that I have a small ulcer that is bleeding and caused the counts to go so low. Or worse case scenario is that the cancer has spread to my bone marrow and is not allowing me to produce red blood cells. I am still very tired and have to be very careful of what I do.

This is also going to delay my plans to get into the Clinical Trial in Dana Farber. My blood levels are going to have to come up before I can get into the trial. Right now I don't know how long but at least a couple weeks for sure.

I will keep you updated but I am going to go get some rest right now.

Kris

Off to Dana Farber

Sorry that it has been a while since I posted. Alek got hit by a stomach bug that he passed on to me. He has had it for about 6 days and I had it for one day but have felt rough for the last few days since I had the bug. Kath has not had the full fledged bug, although this morning when she woke she did not feel so good and has been battling through the day not feeling great. Let's hope she does not get the real deal.

So I will be going down to Dana Farber next week for testing for the Clinical Trial. If all the tests go well then I will start the trial on Monday January 26th. I will have to go to Boston 2 days a week for this trial (Monday's and Thursday's). During the first cycle (first month) the Monday treatments will be 10 hour days and a few of the Thursday treatments will be 10 hours days starting at 7am in the morning. Why such long days? They test you all day after they give you the drug. So I am in for some long days at Dana Farber. The good thing is the hospital is has WI-FI and I have plenty of books and over the last year I have become quite good at napping/sleeping. I might be able to win a sleeping competition if they had them. I will most likely not know how the trial is going until the second month. Let's hope this will stop the Prolactin from going up and maybe even come down in the first few months of the trial. I have to say the Docs down at Dana Farber have been excellent and there are a few options they have in mind if this does not work.

New Years: I had a great new year with the normal New Year's gang. New Year's is great because it is a the last and first Holiday off the year, but it is also sad because it wraps up a the winter holiday season (Thanksgiving to New Years). Leave it to me to think of the negatives of New Years. Sorry. The one thing I do want to share is that saying good bye to all my friends was really tough this year. I guess at the stage of where I am with my cancer I wonder how many more new years do I have left. Could this have been my last? Most likely not but when you are in my shoes that is how you think. I wish it wasn't so but it is. Almost every thing I do that is not a normal everyday occurrence I think is that the last time I will do this and/or I am glad I got to experience this at least once.

One thing I will get to experience is Alek's first Birthday. WOW, WOW, WOW!!! I can not believe MY SON ALEK is going to be one year old on February 3rd, the day the Patriots lost to the Giants in the Superbowl. That loss will be forever tied to my son's birth. I know we say time flies but time does really fly. Holy Cow!!! It just seemed like a few months ago he was starting day care. Now he is walking and about to turn one. If you would have asked me if I would ever witness my son turning one eight to ten years I ago I would and laughed and said you are crazy. This little bugger is my little bundle of joy. If I had to choose between not having cancer and having a family I would choose cancer any day. I know that sounds crazy but I love Kath and Alek so much (as I am getting emotional as I am writing this).

Followers: I have added a few more followers but want more. Come on I know there are people out there that read this that are not followers. I want to get to 50 by the end of this year.

I am sure you will be hearing from me more often since I will be sitting at the Hospital for those ten hours day with nothing else to do then surf the WWW and write posts on my blog.

Over and Out
The B Man