Sunday, September 23, 2012

Back from Visit

I figured that we needed to switch things up and let me write a post, since I haven't done that in a while. Before I get into the actual reason for posting this I will talk about our weekend after the meeting with the doctor.  We stayed at The Carolina Inn in Chapel Hill and it was an amazing hotel, Jenny was actually able to get it for us on Priceline for way under half of what it usually costs.  It was opened back in 1924 and it was beautiful.  On Thursday night we went out to dinner with Jenny's high school friend Megan and her boyfriend, Ed, to a place called Top of the Hill.  It was a rooftop restaurant with great food and atmosphere.  We got up and walked around the town for a bit since we didn't need to head back over to the doctors office for anymore tests before heading to Columbia.  We got to Columbia late in the afternoon on Friday and went out to dinner with Jenny's friend Jen.  We went home early since we were both tired from all of the driving and we had to get up for the game the next day.  We got to the fairgrounds around 1:00 and made our way around to a couple of tailgates before me and my dad went into the game.  The crowd was pretty good and it is always a great day when USC wins and Clemson loses on national tv.  I know that was a quick recap but I figured that most people wanted to read the next part of this post.

  As you all know Jenny and I made the trek up to Chapel Hill this past Thursday for out appointment with Dr. O'Neal.  We into town at around 3:15 and I got a call from Dr. O'Neal's office asking if I was in town yet to come on over and we can meet with him a bit early.  We headed over we were able to get right back to the back to see him.  We sat down and went over everything that has happened since I was last up there in Dec. of 2010.  Talked about the different drugs I have taken, the results of my most recent scans, and the results and patterns of my last CEA tests.  After everything was mentioned on our side we sat back expecting to hear him say the exact route that he would want us to take.........This did not happen.  While he told us about the pros and the cons of each path (chemo) that we could take, but never said this is what you need to take. The pro about staying on the current drug (regorafenib) is that the tumors don't seem to be growing fast and this drug, and who knows what another drug would be able to do.  The con about getting of this drug is that since it is still in trial phase I wouldn't be able to get back into the trial if we can't find something else that works better, I would have to wait until it comes on the market (likely by the end of next year at the very latest).

He also mentioned 3 different clinical trials that he has currently at his center.  One of these consists of a placebo, which at this point I don't want to do because of the fact that I might not get the actual drug.  The other two are both with 5FU which I have had in the past along with one of the drugs that breaks my face out.  I am all for one of these but I am not sure I want to drive to Chapel Hill every other week to get treatment, although if that's what has to be done I'll do it.

I guess that we are at a cross-roads because there are options out there but its tough to figure out what to do but no matter what path we choose I will beat this thing in the end, it is just the steps of getting there that are difficult.  None of these options will make my life easy by any means because there are always going to be side-effects.  Do I want to go back on Vectibix and have the stuff on my face or do I want to stay on Regorafenib and not be able to walk for about 2 weeks out of the month?

The process has not been fun but it is the way my life will be for the near future.  I know that most of the time I seem like everything is good and it doesn't affect me (which is really the case) but this does take it out of you. But as weird as this sounds I am glad I am the one going through this and not someone else.  I have a great support system and doctors that have my best interest at heart and I feel positive we will make it to the other side of this.  I want to thank everyone for saying their prayers for us as we have and will keep going through this, its really helped a lot, I hope you'll continue to keep us in your prayers as we go forward.  I hope to see everyone soon.

Tim
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