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