Friday, September 19, 2008

BIG News!

I should be getting my new liver in 3 to 6 months!!!

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

On the UNOS List

Drum roll please. !!!!!!! We are on the transplant list. Officially! So amazing to be on the list. It feels great just knowing the next step to our cure is out there, a true reality and that hope keeps us putting one foot in front of the next...

Wednesday, September 10, 2008

Scan Results

Mark picked up his CT Scan results when he was that hospital doing his lab work this morning. The radiologist results note "no change in size". Existing tumors have not gotten smaller. But there are no new tumors either. Status quo. But at least now we can breath since we have the results. We decided last night as we lay awake that we hate the scans. Its like the anticipation of ---- crap we have a scan next week---- which is annoying and then the actual scan sucks too (the fasting, the drinking the barium and then when they do the scan it makes your body feel all weird (I believe that is the human microwave-effect). And then waiting for the results. Ahhhhhhhhh! It tests ones nerves.

Tuesday, September 9, 2008

Scans and UCLA

The scoop today... For those of you following along at home:

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.

Monday, September 1, 2008

At last!!!

Hi friends, yes we truly suck at updating the blog. We got out of habit. Typing with one hand while jonathan sleeps on my lap. So we are waiting for ucla to reconfirm the blue shield confirmation. Basically everyone confirming that they confirmed. And we aren't yet on the UNOS list. We still float here in this holding pattern knowing that we probably won't get a liver transplant for awhile is our guess. So we continue the chemo and have another ct scan in a couple of weeks to mark any changes. Which we dread the possibility of any bad results and are hoping for good news. These scans test are nerves. But we remind ourselves that the chemo per the doctors will lose its steam hence the real reason for a transplant. Same ole' stuff really. We are griped in this massive holding pattern. Its cool we are having fun and savoring the last days of summer.