Thursday, June 19, 2008

New News and Good News

So finally some good news with this whole cancer thing. I went to have another CT scan done last Friday. The purpose of the scan was to see how these drugs were working on the tumors. I was fairly sure, actually certain, that my tumors had grown because I have been having a bit more pain in my abdomen lately. I've had to take more delauded (a pain medication) in between my regular dose of morphine. So I was not expecting much good news. Well I was wrong and quite shocked when I read the report. The compared the results to a scan I had on 12/28/07. This new report said ...

There is interval decrease in size of innumerable metastatic hepatic lesions. For example, the metastatic lesion near the dome now measures approximately 3.3 x 3.7 cm froma previous measurement of approximately 5.1 x 4.7 cm. In the corresponding plane, the bulk of the largest mass in the posterior segment of the right lobe of the liver now measures approximately 6.5 x 4 cm from a previous measurement of approximately 9 x 6.5 cm.

So this is obviously pretty good news. We saw Dr. Hecht and Dr. Busuttil yesterday, my UCLA Oncologist and Surgeon. My Oncologist said this result was quite remarkable and not many people respond that well to drugs, especially to a drug that isn't even meant for the type of cancer I have. The plan will be to keep on this Nexavar until it looses it's steam and then we will see where we are at and figure out what to do from there.

At our appointment with my surgeon, Dr. Busuttil, everything went quite good there also. We are still on track to get a liver transplant as long as the tumors keep themselves confined to the liver. We found out I am a type O blood which means there are a lot of other people with type O ahead of me on the list. Type O is the most common blood type.

They did talk to us about one way to get a liver sooner then later. There is this rare disease that some people get where their bodies don't make a certain enzyme and they have to get a liver transplant. These people get to the top of this list very quickly, within a matter of days I think. Their liver has to be replaced but their old liver would work fine for someone like me who produces this enzyme that would kill off whatever it is this disease is. If all of that makes since. Basically they need a new liver but I could use their old one. There is no one like that at the hospital now but if one does show up the Docs will be keeping me in mind. It's a way, they say, to get a liver to someone who doesn't get "fair treatment" from the UNOS group who decided who gets the livers. It's not that it isn't fair treatment, but someone like me gets dropped through the cracks because of the type of cancer I have. Maybe someday they will fix that but for now we have to deal with it the way it is.

Right now I am still not listed on the transplant list. I am going tomorrow to get the last of the labs done. Once the results get sent to UCLA they will send my info to the insurance co. to get approval. At that point I've been told the insurance co. will want me to get some more labs done. After I do those they will review the results and hopefully get approved. I am through with the UCLA side of things, that all went very good. Now it shouldn't be much longer. Lets hope.

Thank you all for checking in on us. Jenna and Jonathan are doing great! We all just hang out and do our thing. Jonathan is getting so big. He actually stood up on his own the other day. He pulled himself up from a sitting position. I almost crapped my pants. I think he did!

Tuesday, June 10, 2008

Latest Scoop

Has it been a month since I posted anything? I have been soooo blah about writing anything to do with hospitals, doctors, medicine, insurance...blah blah blah blah blah.

With that said we have new news. We heard from UCLA today and we have an appointment with our regular UCLA oncologist next Wednesday and a CT Scan before that appointment. Our oncologist has made us an appointment for that same day to also meet with the Chief of Liver Transplant Surgery (who is also the doctor that performed Mark's pancreas surgery). This doctor is very well renowned and we are so fortunate to have him on our team. This meeting is to discuss possibilities and options regarding getting Mark a transplant sooner than later. We are hoping Dr. Busuttil can assist in getting Mark's MELD score raised so he can be on the "active list" for people awaiting a transplant. Or another way to put it, we would hope for a transplant before the one we got goes kaa-poot, kaa-pesh?

I would also like to say a big thanks to our friends who came out to support us at the Relay for Life Walk. It was an emotional morning. Just the fact that we were there was upsetting for me. And during the opening ceremony's Survivor and Caregiver Lap I cried thru the half of the it as Mark and I arm and arm pushed the baby carriage around the lap. But at the end of the lap we were embraced by Anna and Michael. I had never been so happy to see two other people and their big, distracting smiles. The team we were on called us that following Monday to say we had raised a lot of $$$ and that many people came by the booth to check in and say they were walking on Mark's behalf. Much appreciated to you all for your time and donations.

We will update that blog after next week's appointments.

Tuesday, June 3, 2008

Long Time No See

Hey all, it has been quite some time since we have posted anything on this blog. But then I guess you know that. It seems as though nothing is progressing as far as the transplant goes and life is going on as usual. There just hasn't been much to say.

But now we have just done the Relay For Life this last weekend. It went great. I'd like to say a big THANK YOU to everyone who donated money to the cause and also a big THANK YOU to everyone who came out to walk. Thanks to all of you Jenna and I raised a little over $1300 to contribute to our team! WOW!!! The whole thing was a huge blowout. Is that the right word? I don't mean the type of blowout in your underwear, but the kind where lots of people show up and have a good time.