Tuesday, May 26, 2009

New News

So ucla got word from unos as of today mark's meld score has been raised to a 25. They are doing transplants when your points are 25 to 27 so this means we are actively waiting for a transplant. i told Mark i'd rather just freeze time like it is right now. Too scary! Transplant surgery to major, recovery is months and rejection is always a possibility soooooo cant we jut freeze time like it is right now? Pleeeeeeeaase i asked. I guess thats not how things work. So we will move forward to the next step of all of this, and maybe we really are infact seeing the light at the end of this nightmare......

Friday, May 22, 2009

Recent scans and stuff ...

Recently, I was lucky enough to have a few more scans to see how the old liver and tumors are holding up. The results came back positive. It looks as though the tumors are still there and staying about the same size. And there is no spread. That's the good news.

It was just two tests I had to do. The first one, the CT scan was easy. In and out in 20 minutes. The following week I had to do the Octreotide scan. It's kinda interesting. I don't know if I've ever explained that one. For those who are interested here's how it works.

The type of tumors I have, Pancreatic Neuroendocrine Carcinoma, started in my pancreas and spread to my liver somehow. Blood stream or something. Anyway, so technically, I don't have Liver Cancer, it's always classified from where it starts. So it's Pancreatic Cancer that has metastasized to my liver. Anyhow, my point is, that particular type of cancer is hungry for a chemical called Sandostatin otherwise known as Octreotide. The Octreotide scan uses radioactive Octreotide that is injected into a vein and travels through the bloodstream. The radioactive Octreotide attaches to tumor cells. A radiation-measuring device detects the radioactive Octreotide, and makes pictures showing where the tumor cells are in the body.

So that's what we did. I got injected on a Monday morning, then I went back four hours later for a scan. Usually, the scan takes about 1 1/2 hours. Then I go back 24 hours from my injection time, which is the next morning, for another scan but this one takes about 2 hours.

It was a little faster this last time because they had some new equipment. It was pretty cool because I could watch a screen as the machine passed over me. On the screen it showed all the radiation that was in my body, all concentrated around the tumors. It was also a little scary. I hadn't seen one of these scans before and I was a little amazed at the number of tumors in my liver. I usually think of most of the tumors being on the right side of my liver but from the pictures I could see that there was a very heavy population of tumors on both sides.

I really try not to think about it during the time between taking the scan and getting the results. On the screen I had seen an accumulation of radiation in an area just south of my belt. I just tried to not think about it during the next week while we waited for the results. Although, when I went to pick up my scans, I couldn't read them till I got back to my car. I was so nervous. The whole way back through the parking lot I was trying to figure out how I was going to tell Jenna that the cancer had spread.

Then finally I opened the results and read them. God, my heart was beating so hard. Thankfully, it had not spread. I hate picking up results. The one thing it did say was there was an increase in the uptake of the chemical. But they attributed that to a difference between the old and new machine. They said it was an insignificant amount anyway.

Then I was off to New York! We had a great time, saw a lot of the city. Ate a lot of hot dogs and pizza and hot dogs. And we had a few hot dogs. Thanks to Jenna, we went to the Yankee game. That was awesome. A great way to spend a radiated week. The radiation lasts for about 4 days, during which it's not safe for me to be around Jonathan. By the end of the week, it had warn away and back home I went.

As for the rest of our little family, everyone is doing awesome. Jonathan is talking like crazy. Lot's of words, no sentences yet. Maybe a 'bye bye doggie' here and there. Jenna has been going out walking lately, I'm very proud of her. It's motivated me to try to do some myself although I can't go with her, she is way to fast for me. I've lost 10 pounds since I took off for New York. I'm going to be keeping an eye on that. I don't know if it's from walking or what. I'm not too concerned yet.

And so then that leaves us with the impending liver transplant. With the outcome of these test being what they are, I should be moved up to a score of 25 on the UNOS list. That means we are on track and I am still expecting to get a new liver by sometime November. But there is always the chance it will happen sooner. Yikes!


Monday, May 4, 2009

Does this work?

I havent posted from my phone in ages. Anyhow last weeks CT Scan came back good. No spreadage. Just the same pesky tumors in Marks liver. So today he has the dreaded test that injects him with all that crap and he cant be around baby for the rest of the weeks SUCKS! We should get these results at the end of the week.
Thats all i got for now :)