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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