Tuesday, November 25, 2008

The magic number is....

We are happy to report they asigned Mark a 22. UCLA had 2 conference calls with UNOS on Friday. They delibrated and reviewed everything. Basically questioning if Mark was even a good candidate for liver transplant. And asked that UCLA pull data, studies, and to discuss all scenarios. It was nerve racking as we waited in between the calls. UNOS really wanted to review everything. And make sure that transplant really was the best and most appropriate option. In the end we got the 22 so we are happy. There is just minimal info about this cancer and transplant and outcome etc. But to be honest I rather it be like that. Not really knowing is so much better. Trust us, not knowing is better. It boils back to that simple question we have all aked ourselves...would you want to know when you are going to die? Trust us you DON'T!!!
We like our plan for transplantation and we know that the cancer won't come back--- so we live like that. Plan and simple.

Wednesday, November 5, 2008

The Results Are In ...

The results of both of my scans are in but they have not been shared with UNOS yet. There has been a delay in the original Nov. 7 date for presenting the results. Now we are waiting for November 14th. The day before Jonathan's Birthday! Hopefully we have great news.

As I said, the scans all came back as expected ... or at least as hoped. The cancer has not spread anywhere else. And the uptake of the chemicals were at a significant decrease. The only thing that sucked, and I mean sucked on a seriously sucked level, was the fact I had to be away from Jonathan for 5 days after the Octreotide scan. Something I am really not looking forward to after I get the transplant!

I spoke with my new Transplant Coordinator Erin this morning. She said she expected me to get the transplant within the next 4-7 months. We had a good conversation about what to expect after the transplant. It really is a little daunting thinking about everything coming up, and so quickly too! Time is going to fly by, like always, and before I know it I'm going to be laying there with a tube in my nose.

So for now I am going to just appreciate each day I have with all my parts. Well, I guess not all my parts because they already took my spleen. I will just have to appreciate each day I have with all my own parts.

Jenna and I are planning a week of fun come the week of November 23rd. That is one year since this all started. We are hoping to make some new/better memories. I know we can. It's pretty easy with Jonathan around. We are heading to Disneyland for two days on that Monday-Tuesday. It's going to be a blast. We already did a trial run with the little j and Grandma Diane. He loved it ... actually we all did.

I think I need to go to Hawaii. I was reading today about post transplant procedures. Very soon I will prohibited from sitting by the pool and enjoy a Mai Tai. I definitely think a quick trip is in order.