new day, new plan

First, don't say that it can't get any worse b/c you will be proven wrong. Sitting in the oncologist office and what A TORNADO? seriously? I think everyone is okay, they evacuated the girl's school until it passed. really? come on. pancrease cancer isn't enough we need to tack on a tornado to the day?

anyway, moving on...

The billirubin has plateaued at 3.9. In a way that was a blessing. If it was going down we were at a crossroad on whether to wait another couple days to to see if we could qualify for another clinical trial that you needed to be chemo naive for but since it is really not budging we feel we need to move on with some kind of treatment. Before we got there today we assumed that would be the standard treatment, gemcidibine. But Dr. Hamm said based on our last conversation we seem to be more interested in something that is more aggressive. We are interested in what will work but they don't know that soooo...
He talked about a set of three chemo drugs (called FOLIFIRINOX) that have had more success than the standard treatment. They are using it more in Europe than the US. It is a hard regiment but with his age and overall health he can handle it (better than an 65+). There are strange side effects to each of them but you never how a patient will react and they have some medications to help with some of them. The weirdest one is he can't eat, drink or touch anything that is cold. If he drinks something that is cold it will feel like he can't breathe. If he touches something chilled it will feel a burning sensation. When it gets cold outside he will have to wear a scarf or something over his mouth. This will last 5-7 days after treatment. Just bizarre. The rest of the side effects are things that you have probably heard from other cancer patients, nausea, fatigue etc etc. I won't bore you with the details.

We are hopeful this is a good solution and it will shrink the tumor and get us moving in the right directions. The treatment will be every two weeks for 6 month. One drug takes two hours to administer and another an hour and half in the office. The third Craig will take at home. It comes in a pump and will take 48 hours to administer. They will start it in the office then we head home. It drips every so often chemo drug #3 into his port for 48 hours. Then someone from home health comes and deaccesses the port (again this seems very strange).

I add all this to the blog not for you to feel sorry for us. Although these seems a bit ridiculous if this is the new normal that keeps him here with us, bring it on. Today is a good day, a day of hope for the future. Of course it is all wait and see and feel hopeful this is a good treatment plan. We can still look for clinical trials but starting some treatment excludes out of some of them that want the patient to be chemo naive. We don't wait any longer to start treating the cancer.

There is a certain comfort being down at the oncologist office. It is "normal' to have cancer there. Your questions are answered by people that have had that question 10 times (maybe that day). I have been frustrated there too but it is good to have answers when they can give them to you. One thing that I am not sure I will ever get use to is the answer "well it depends". Most of the questions that is the answer. It depends how he reacts to the chemo if he will have all the side effects or just some. Will we have to live in a bubble this winter in order to dodge the cold and flu since his immune system will be compromised? it depends on his white cell count but he will take a shot the day after chemo to increase the white blood cell counts so it shouldn't be an issue but again it depends.
Will he lose his hair? It depends, some people do some don't.
Will he be able to work during chemo? well it depends how he feels.
Will it work? well it depends...
makes ya nuts. There is more that the medical field doesn't know than what they do, comforting huh?

No matter the treatment plan we put our trust in God. We pray that whatever treatment avenue we take He works his miracle through that medicine.
Proverbs 3:5-6 Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him and he will make your paths straight.

We report back downtown to start the chemo regime at 9:30 tomorrow morning. Craig will come home with the chemo drip and we will take one day at a time and one side effect at a time until this ugly tumor is gone or shrunk to a managable size.