Sunday, July 1, 2012

Update on's hard to keep up!

I am having a hard time keeping up with my blog these days. So much is going on and it seems like I spend my time on the internet reading and researching FHC as oppose to updating this blog.

Austin had his appointments with the medical oncologist and radiation oncologist to discuss possible treatment options. I will go into those details in a bit, but basically we still don't know 100% the game plan. The doctors were disagreeing to some extent about appropriate treatment and have scheduled a PET scan for July 17th and another appointment to discuss the definitive plan. 

In the mean time...we have joined the Facebook group "Fibrolamellars of the World Unite!"  and it has been so helpful. I encourage our family and anybody reading this blog dealing with FHC to join the group. There is a lot of support and knowledge and as one group member said..."you will learn more about this disease in this group than you ever will in a doctors office." I have learned soooo much from them already and feel so thankful for all the relationships we have made so far. 

I have been e-mailing this morning with a women in Colorado who found this blog googling FHCC blogs! I love that. Her husband is in a very similar boat as Austin and is about 5 weeks behind us, as they are waiting to see if the tumor will be operable or not. It is very nice to compare stories and hear what her doctors are saying to her. 

I just submitted a request to MD Anderson in Texas as they are one of the leading hospitals with FHC research. I'm not sure how it will work...if we will go there for an appointment, if they will talk with us over the phone, or if they will talk with our doctors via a phone consultation. I just wanted to get the ball rolling with that connection and hope to hear back from them this week. 

I feel most of the people I talk to and read about recommend these hospitals (MD Anderson, Rockefeller Institute and Sloan-Kettering in NY) and say "If I knew then what I know now I would have reached out to these places long before I did." I definitely don't want to be saying that in 1, 5, 10 years down the road. So, we are looking into those options now and I would feel sooo much better hearing some of those doctors recommendations, especially if they agree with our Duke doctors. 

Aus and I are taking things day by day. It's hard. We feel sad sometimes, we get discouraged. I try not to show it, but I do. Especially reading FHC stories, there are a lot of hopeless ones out there. We read a lot and say, "gosh I open that doesn't happen to us." It's scary. Lately I feel like I am living with this huge fear, this huge weight on my shoulders. Another reason why I write this helps me deal. 

This article was posted in the FHC group today and I thought it was so good. And so true. Sometimes I think now that Austin's surgery is over people think it's just over and done. That was it. The cancer is gone and they got it all. I wish we knew that. I wish we had some facts about that. But we don't know that. We just don't' know. And that scares the shit out of me. We don't know if it's still there or not, and we definitely don't know if it will show it's face again. I remind myself daily of the good facts we do know, about the contained tumor and clean margins, but still, that only helps so much. There is a huge fear with cancer I am learning to find out. 

Click HERE to read the article- "The things I wish I were told when I was diagnosed with Cancer" 

Austin is going to work a few days this week and that will be good for him I know. We have been eating lots of liver food and he is taking lots of vitamins. I have him on quite the regime: Acai juice, Vitamin C, D, E and Milk Thistle. 

We are also rubbing Vitamin E on his scar everyday. See how good it looks!! 

We went to the beach last Sunday for the day. It was super fun and just what we needed.

Aus doing what he loves... 

Susan, Aus and me! :) 

Molly girl loves it, too! Right after she dug a big hole!

Love him!