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