Nerds

We are having way to much fun with my iBooth. Laughing is so therapeutic. At Mark's next support group meeting I am going to highly suggest everyone take silly pictures of themselves. I love a great laugh!!!!

Doing good, right?

So far so good. Mark has been feeling great. We look forward to our UCLA Liver Evaluation.
I have also been in correspondence with a 41 yr old woman on a website called Cancer Compass. She had what we have. She had the tail of her pancreas (where primary cancer was) removed, followed by a Liver Transplant. When I told Mark I read this woman's messages posted on Cancer Compass his first question was, "is she still alive?". I was so happy to inform him that she was (and was 3 yrs post transplant and still cancer free). I let this lady know that her story is the hope we need and how much we appreciate her sharing her story. This lady had the transplant only 4 weeks after she got on the list. We think the loose average is 6 months...but have also read quite longer. Like all of this there isn't any rock solid info or plan, we just live with this darn uncertainity, which is the worst part. But just last night I told Mark, that the way we conduct ourselves in the midst of our crisis will be shared, talked about and offer hope to friends and family for many many years to come.
We meet with our oncologist next Wednesday (pre- "big" evaluation appointment). And the 17th we go back...we have to be at UCLA at 7:30a each morning during the 3 day interview, which means we need to leave the house by 6a!!! Holy cow those are going to be three very long days.

Cancer Sucks

If you don't have anything nice to say...

If you don't have anything nice to say don't say anything at all. If I lived by that saying there would be days of silence for me. Just kidding- but really not everything I feel or say can be this uplifting message or positive outlook. Sometimes there is nothing more satisfying than a good ole' bitching session. You know the type where you sit down with a close friend and just complain and complain. Since I feel blah at this moment, I am going to write nothing at all. May my nothing say everything.

Liver Transplant Evaluation Appointment

UCLA called us today to set up the appointments with their Liver Evaluation team. We really don't know what the evaluation will cover as far as what exact tests, meetings,etc will transpire. We go to UCLA for 3 to 4 consecutive days and meet with numerous doctors. And they determine if Mark is a candidate for a liver transplant. We are really excited to tackle this phase of the process. But we are also a bit intimated by the formality of it all. Can someone on the team decide that for whatever reason we won't qualify? like they find out Mark's feet stink or he can't get his golf score under 100 (sorry hun). Or is it like a quiz and we need to earn a certain number of points to pass? Everything I find on the net just says you meet with almost 10 doctors (including a social worker and a physcholgist...Lisa perhaps you can give us some pointers). I am a nervous Nellie by nature so the appointment isn't til March 17th so this gives me almost a month to worry, wonder and hash out... HAHA. If worrying was an Olympic Event trust me folks I'd be bringing home the gold.

Bounce... bounce... bounce

Mark turned another corner this weekend and he is really moving and getting around well. Well enough that he can help more with the baby. Mark keeps telling me he is so happy that he can contribute to taking care of the baby too. He has told me like a zillion times since he came home from the hospital that he hates having to watch me do everything related to taking care of the baby. And I knew it bothered him, so I kept reminding him (and me when I felt I was starting to unravel) that he would soon feel strong again. And yeah that day is here!!!
The most exciting thing that happened this weekend involves one of those big exercise balls. Our friend Chris had told me that they used one of them to bounce their kid to sleep. Previously, I had been walking & bouncing around the house for hours with Jonathan when he would have a gassy night (which seemed to be like every night lately). So now we have been sitting on the ball and bouncing, bouncing, bouncing our lil' man ... making all 3 of us very happy.
We had a great weekend. Relaxed, went to Ryan's birthday party (it was at an indoor play yard with this massive 2 story blow up slide- everyone went down it...even Mark) and the 3 of us ran errands today. I can only anticipate that this week will be good too.
Well I had more stuff to say but to get to this point I had to reboot my laptop twice. And in doing so it seems that my frustrations have zapped my creative juices.
Going to bounce my lil' butt to bed. How exciting...Mark is going to try to take the first feeding tonight (which usually strikes between midnight and 2a).
Nitey nite.

The Long Road Home

Anna and I after she broke me out

I can't believe it's been a couple of weeks since I've posted a blog. The picture of my guts doesn't count. I believe I was still in the hospital and I was frustrated with writing on my cellphone. Now that I have a computer in front of my it is a lot easier to type and yet I still haven't sent out a blog. Thank God for Jenna, keeping up her blogging, or they might have shut down my blog by now. Sorry for the wait. I wonder how many of these apologies I will write.

So now I am home and by now feeling much better. It was great to get out of the hospital. Obviously. I was ready to leave a few days before they were ready for me to go. That made it very difficult. I don't have a problem with being in the hospital if there is good reason. The last couple of days there, I was getting up much better, eating solids and feeling better about the c-diff. I would get up in the morning, get dressed, and then sit around the whole day. It got old, quick.

Thankfully I have very good friends and family. Jeremy came to visit me almost every day. I know that must have been a pain in the ass driving down there on the 405 durring rush hour traffic, but he did it. He brought his laptop with him and a couple of DVDs one night. We tried watching "Balls of Furry" but we had to turn it off. In the opening of the movie, the main charicter is hitting a ping pong ball off another guys head. It made me laugh so hard. And because laughing made me hurt so bad it became funnier and we laughed even harder and it hurt worse. We couldn't stop laughing so we had to turn off the move and Jeremy had to leave the room.

Jenna also came down to visit me all the time which was great. I know I couldn't have done this without her. She was, and is, such a trouper. It's amazing the kind of strength she has shown. She would go to work every morning, drive down to the hospital to see me, and then go home to take care of Jonathan. It was so tiring for her and yet she kept on. I don't think there is any way for me to say thank you enough.

Then there is Nicole, Jenna's sister. Nicole works at the hospital in the NICU department. She works down on 2nd floor on Tuesdays and Thursdays. On the days she worked, she would come and visit me at least 3 times during the day. It was so nice to have someone so close by. One afternoon when Nicole came to visit, we went on a walk and I got to see the room she works in. It was like a little field trip. I even had to get my permission slip signed by the doctor.

Finally the day came for me to go home. It was a little passed due. I couldn't sleep well the night before, knowing they were going to take the drain out of my side. This drain is a plastic bulb connected to a tube that runs into my gut. It went into me just below my incision. I had been told it was uncomfortable to take out. I had heard that before when they were going to take out my nose tube, so I knew what that meant. It was going to hurt. And it did. They started pulling on it. At first it wouldn't come out. They had to lay the bed down further and try again. The second try worked. The end of the tube is bigger then the tube itself so when they pulled it through ... lets just say it sucked! But finally it was out and I was free. I packed up my stuff and within about 20 min. they had a wheelchair there to take me away.

Jeremy was coming down from Valencia to get me but I was afraid it was going to take a while in the traffic. I wanted out sooner then that. I called Anna, a good friend of Jenna and I who works with me at LADP Santa Monica, and she agreed to come get me. Anna and Glen (another friend of ours whom we work with) were just pulling up to the loading dock at the same time I arrived. It was so wonderful, finally freedom. Not just any freedom either, this one came with an Ice'd Mocha from Starbucks! Thanks Anna and Glen!! They took me to the office, which is very near the hospital, to wait for Jeremy who showed up the same time we got there. Glen took a couple of pictures of my scar and then I was off for home.

I'm going to quit this post here. I've got things to do today and I want to get this up on the board sooner then later. Everyone is doing great though. I am able to do more and more each day. I am feeling stronger, better and faster ... cue the Six Million Dollar Man music. I made a video the other day, "A day in the life". It was too boring to post though so all you get is this. Enjoy. I will start work on my next blog tonight. It seems like there is so much to write about and at the same time nothing. If that makes sense.

A picture of my scar