So what did Vandy say?

First there is not one answer to the question on what to do next we have definitely found that out. There is not a right and a wrong on the steps. There is not a black and white, one size fits all answer to this disease. I guess that is what makes it so hard. We went to Vandy not looking for an answer but more options and boy did we walk away with that. Dr. Berlin is the doc that we met with at Vandy. He is ridiculously intelligent. The more we asked question the more answers came with additional questions. He talks about the pancreas like Craig blogs, in one continuous paragraph. He is a fountain of information about the pancreas and cancer in general. He is not just the one that does clinical trials but the one that writes them, gets them funded and does seminars on them. He is the man with the pancreas plan.

He is also on the board of the PanCan organization. He added fuel to the fire b/c so much of his research is sitting waiting for funding. He even went so far to say that it wasn't the politically correct cancer to fund. A lot of times it comes down to a cancer that is close to a congress person's family. Breast cancer and prostate cancer seem to remain their favorites to fund since they hit home more often but he said in the coming years that will change for the pancreas. They have seen an increase in the amount of case. The number maybe have to exceed the favorite cancers to fund before it gets the attention it needs for approved funding. He even said we just have to get you to that point. Well there is some raw medical hope.

Usually when I ask "what would you do next?" we get a pretty clear answer step by step. Dr. Berlin said he would do a clinical trial with him. So if you are keeping count at home, that is yes FOUR different opinions. He did say stay on some form of the foliferinox until it stops working or we can get on his trial. He did admit that he had a bias since that is what he does, research. He recommended that we drop one of the drugs b/c after 9 minutes it doesn't effect the cancer but the side effects last 3-4 days of fatigue etc. How does he know exactly how long the drug works, I have no idea but he is sooooo smart so I believe him.

So there you have it, the smart researcher recommended a clinical trial.

We do plan to make another trip down there to have them pull more tissue from the cancerous area to run a "panel" so they know what kind of pancreatic cancer it is. What kind of cells it effects. He named what it could be and of course I can't pronounce or spell any of them so I won't bore you. But it was interesting to hear someone talk in such detail about the disease. Comforting in some ways and disappointing in other ways. How can the "experts" know so much but still not have the perfect answer for this disease. I guess I answered my own question when talking (ranting) about the lack of funding. This of course is a very complex cancer and very aggressive. The treatment that seem to work are too toxic to be able to stay on for a time period that is effective.

We don't know what we are going to do but we probably won't decide until the last CT scan which is in two weeks. I think I have come up with a great plan on how to decide. Craig gets to pick the treatment plan since it is his pancreas and I get to pick the doctor since I do most the talking. We shall see. It boils down to whatever God tells us to do. So continue to pray for guidance.

I'm sorry if this post sounds so negative. It was a long day and chemo is tomorrow. It is what it is.

We really are doing very well. We are thankful for the progress so far and the good days that Craig does have. Sometimes I feel guilty for being okay. It is like I am not doing the issue justice without flipping out all the time. It just isn't productive. This is simple a part of our life right now. We are still so privledged to live in the neighborhood we do and live the life we live. I am so spoiled with blessings I am not going to let this cancer get in the way of being joyful. Do I hit the wall somedays? yes. I would like to figure out how to get rid of the guilt of being okay and taking this one day at a time. It is draining to try to figure out how to react to this and not just be hopeful and keep moving on.

ramble ramble. I think I am going to bed now. I am just rambling.