Friday, September 19, 2008
I talked to some people at UCLA today. They told me they had submitted the request for a higher score and it was approved if I pass two more tests. They want me to take another PET Scan and Octreotide Scan to make sure the cancer hasn't spread to anywhere else. If it still hasn't spread, they are going to give me a new MELD score of 22. Much better then a 6. Right now they are transplanting people with a score of 25 to 27. I'm fairly certain it hasn't spread beyond the liver, at least that is what my last CT scan said but then these two tests are a little better in detecting this stuff. Still, I believe I will get this new score of 22.
When I get that score of 22, they wait three months and then raise it to a 25 and then in another three months they raise it to a 27. What that means is I will have a MELD score of 27 in about 6 months and since they transplant between 25 and 27, I should have myself and new (to me) liver in 3 to 6 months. Holly Shit!!!
Obviously this whole thing means I am going to have to go through another surgery. I'm a little scared about that. If you know me at all, you know I hate that stupid tube that goes up my nose! But the part that I'm more nervous about is Cellular Memory. I wonder if it is all true. If you are not aware of what that is, it's when you get memories and other stuff from the person you get the organ from. Scary!!!
But really, I've done it all before and so I know I can do it again. I also know I don't have to do it alone. I have all my friends and family for support. And I have Jenna and Jonathan here with me, my two favorite people who constantly remind me of how lucky I am.
Looking back it seems like we have gone through so much to get where we are now, and although that is true, it still has been under a year since I was diagnosed. It amazes me to see how much has happened in so short a time. Not just with the cancer either. Jonathan was born almost a year ago also and he has changed so much. Although he is still just a baby, at the same time he is such a big boy. It just goes to show me how life goes on no matter what so you gotta make the most of the time you have.
Yeah, I'm really going to get my liver!
Thursday, September 18, 2008
Wednesday, September 10, 2008
Tuesday, September 9, 2008
Today Mark has a CT scan. Reults will indicate if chemo is continuing to shrink the liver tumors.
We have an appointment next Monday at UCLA to review CT scan results, current meds, etc
Yesterday UCLA financial office called to let us know that the triple duty confirmation between ucla and blue shield is complete and all parties have agreed to agree to pay for a future transplant. We should be on the UNOS list in about a week.
That's all folks.