Scott says:
I apologize for my recent absence from the blog. I have been tired, but that has little to do with my not posting. The fact is, since October, I just haven’t wanted to write about the PC. Still don’t really. Don’t want to talk about it, don’t want to hear about it, don’t want to think about or even know that it exists. I am stuck in full blown PC fatigue. And it is tough to shake.
Things have generally been going pretty well. Tumors are more or less stable (more on that in a second), the boys have been staying as busy as ever, and Marisa and I have been traveling all over the place. With all of that going on around the treatment schedule, we have recently had a little set back. In the time between the radiation treatments and my last round of folfiri, one of the mets in the liver has decided to not play nice. It has grown some. The rest seem to be more or less stable or might have even shrunk a little. But we have to deal with the bad actor.
[Just a quick side note for the folks out there that are dealing with PC (or anything like it) right now. I have had 2 major frustrations since my diagnosis: 1) inconsistency of radiology. I understand that they are trying to measure a 3 dimensional object with 2 dimensional tools, but come on. There has to be a way to add more consistency into the process. 2) the numbers game. When you have something with numbers as bad as PC numbers are, the constant refrain is “you are not the numbers.” And that is absolutely true. The numbers that we constantly see don’t include us. They don’t refer specifically to my cancer, me, or my situation. And because of that, they are of limited value. The hiccup here is that when it comes time to decide your course of treatment, the numbers are the gold standard. Because something didn’t work for someone else doesn’t mean that it won’t work for you. It might. It might not. You have to be able to consider the possible risks and possible rewards and you have to do it with some consideration for the numbers, but you don’t have to let them always be determinative. You have to do the math and decide for yourself.]
So, I am back on folfirinox. I may be the only person to go back on it at this point, but we know that it works and if we can get the neuropathy under control, I should be able to stay on it for a little while. This stuff isn’t fun, but I am happy to report that the first round back was not as bad as I remembered. Tired, yes. Fatigued, yes. Nauseous, yes. Alive, yes. Fighting, yes. Head down, feet moving. Trying to move the pile forward.
In addition to the folfirinox, we have consulted a surgeon to see if they might have some suggestions. We are way out beyond the standard of care and that makes everything we do or try a little tougher to figure. There isn’t great data out there on some of the stuff because people haven’t done much of it before. We are in uncharted territory.
The surgical options are a little tricky. As our medical (and primary) oncologist has said repeatedly, we are talking about a focal treatment for a systemic problem. Once the cancer has left the pancreas, it’s out and you generally assume that it is everywhere. But every situation is different. There isn’t any data out there on the benefits of this surgery, but there isn’t really any out there suggesting that there aren’t benefits either. And besides, its impossible to measure the benefits when you only have one outcome. You can’t say that it helped, but you can’t say that it didn’t either. What is comes down to for us is this: We are not looking for a surgical cure here. We are looking to buy as much time as possible in the hopes that we run into that cure somewhere along the way. So after a little risk/reward analysis, we have decided to take a shot and see what happens.
So we met with the surgeon. I won’t go into the details of the conversation, as entertaining as they may be, but the end result is that I will be undergoing a laparoscopic procedure tomorrow. The plan is to take samples of the tumors to send off for some very specific testing in Arizona and Pennsylvania. The surgeons will take a good look around my abdomen to see if the disease is present outside of the pancreas and liver. If it is, they will close me back up and we will figure out next steps from there. If the disease is just in the liver and pancreas, but in greater amounts than showed up on our most recent scans, we may look at some very specific treatment options that focus on the liver. If (and this is the best scenario) my insides look like the scans, they may either resect or ablate the tumors in the liver. This whole thing starts tomorrow at 5:15 am.
I should be more specific about some things here. The scans have shown a stable tumor in my pancreas (I’m hoping that this tumor is already toast from the radiation, but it takes a while to be sure), and 3 tumors in my liver. The procedure tomorrow will include an internal ultrasound of my abdomen and it can find things that are smaller than the scans can pick up. So, hopefully, after tomorrow we will have a good idea where things stand on the whole.
I know that I don’t have to ask, because the support I already get from you is amazing, but any prayers and positive energy that you can spare between now and about noon tomorrow are greatly appreciated.
That said, in some ways this has brought me back to the anxiety levels of the early scans. There is no reason to believe that tomorrow’s procedure will show anything new, but the possibility that it might is proving tough for me to deal with at the moment.
So that’s what’s on the plate.
For reasons that I will explain in future posts, I will be working much harder on getting things up on this blog from now on. Thanks again for everything that you all do. I hope you know how much it means to me and how helpful it is everyday to know that folks are with me in this.
Love to all and Pray Big!
My Crappy Pancreas 