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

Wow... That's a lot of ouwies !!!

"That's a lot of ouwies" Dylan McCullogh Feb. 16, 2008.

That was the quote of the weekend. As Uncle Mark lifted his shirt to show Dylan his scar and to explain why he was "fragile". Phew Dylan was super sweet and checked it out. I really have come to admire kids. Being the quintessential planner, I have already wondered how or when Jonathan will kinda grasp all that had surrounded and changed his world when he was only 13 days old. Will he understand all of this or does he even really ever need to know? All I have to say is, if my son sleeps in our bed or isn't potty trained til' he's 4 yrs old... please cut me some slack.

Mark wasn't a baby himself this week. He pressed on, got another chemo shot in his tiny bootie, hobbled around the mall and into our work one day and tonight we enjoyed sushi (take-out) with Jeremy. We have an appointment with Dr. Singh this Tuesday--- we will fill her in and we are seeing her to get more pain meds and an insurance referral to a UCLA Hepatologist and a G.I. doctor.

Wrapping up the week with a pretty bow!

All and all we liked to give this week two thumbs up. The baby went to bed at like 8 or 9 each night (he still woke up like every 2-4 hrs to suck down a bottle but he didn't pitch a massive fit all evening like he had been..YES!). Work was all about change as my Ops Room was repurposed displacing me temporarily to another office and a new office-mate (and super close to Tammy's desk!!! fun fun fun)... change is always good right? Our UCLA doctor appointments were not epically informative, but confirmed we were on the right path and biopsy reports indicated from the tumor they removed from Mark that we are fighting the cancer suspected (I was waiting for them to come back and say "oh sorry you are fighting that crazy, aggressive cancer that the doctors originally diagnosed us with" so now I can breathe knowing time is on our side - PHEW). Mark's "cool" 36 stapes were removed and replaced with not so "cool" tape. ...And the church hooked us up with yummy meals each evening- anyone who helps me plump up my Mark is a friend of mine. So all and all I hope you feel as satisfied with your week as we are with ours.

Blog Slackers

Lisa told me I am now a blogger...feel very hip (once she explained to me what that was). So now I blog...

Long weekend. Settled in. Realized that hospitals are no fun but they did wait on us hand and foot (that is the saying, right?). Mark is moving around really well. He did go awall once on me, and walked to the Old Navy around the corner from us, and I freaked out on him and made him promise not to ever do it. He is very bored and is pondering taking the city bus to get around since he can't drive yet. "nobody walks in L.A." but the bus ... seriously people he must be bored.

Otherwise, we are doing a lot of eating. We need to fattin' him up. I swear Mark is now known as the skinny one of the two of us and I just can't be married to a man with a smaller bootie than mine! HAHA. So like that book I keep wanting to read we continue to "Eat, Love and Pray".

2 UCLA doctor appointments tomorrow ... stay tuned.

The Guts Of It

Here is a picture of my spleen and pancreas. I asked the doctors to take a picture while I was in surgery and they were nice enough to comply. I've Photoshoped the original so as not to gross anyone out. I also have a picture of my abdomen while they were cutting away. It's pretty cool. My plan is to come up with some kind of look I like and have a set framed. I will probably wait till I can get a picture of my liver to go with it. This was one quick attempt at doing that. I have a feeling I will be messing around with this quite a bit.

Smiley :)

Yea Daddy is Coming Home !!!

Jonathan is all smiles because Mark is coming home. Jonathan and I are so excited!!! Anna (our westside connection) is picking him up for the hospital right NOW.Publish Post

One Flew Over the Koo Koo's Nest

Totally sucks. Mark has to stay at the hospital one more day. If they don't get him out soon I think he is going to need to be moved down to the Psych Ward. He is feeling good though. They put him onto the MS Contin that he normally takes at home and that is managing his pain. So now we just wait. If they don't let him out tomorrow, Jeremy and I will start to picket in front of the hospital :)

Just A Little Update

I'm still here in the hospital!! I should be going home tomorrow. Some crazy things have been going on here. I've made two room changes in the last two days. One change was due to a guy they placed in my room. He kicked a nurse in the face! I asked to be moved. Then they found I have a bacteria called 'C-Dif' and they put me in a private room. I got it from the antibiotics killing a good natural bacteria that fights this c-dif.

Its hard to type on my phone so I will write a longer update when I have a laptop in front of me or when I am finally home. I'm doing great though. Today is my first day of solid foods. Very exciting although I have to take it real slow. Thanks again for all of everyone's support. It has helped make this bareable. Until next time.

The Count Down is On

Work, hospital, go home and feed baby during the wee hours of the night. Repeat as needed. Phewie the cycle is almost over. We are very hopeful that Mark will come home tomorrow. He is feeling better. They are getting his pain back under control (they tried cutting out all pain meds until he had to remind them nicely "what about the pain I have from the liver tumors"...oh yea keep the drugs coming please). Mark can have solid foods today. Poor guy has not had a morsel of food since last Sunday. Yes that is like 8 days ago. Lets place bets on how much weight Mark lost. I say like 8 pounds.

You know you have a small....

You know you have a small TV when your foot is bigger than the TV screen.

Nose tube out!!!

Nose tube is out!!! Mark is so happy. And now he is enjoying a delish cup of ice chips. Tomorrow he gets broth and jello. And his pain is under control too. Next is getting him home. I can't wait to have him home with me and the lil' dude.
We are getting ready to gather around the 9 inch TV screen in Mark's room to watch the big game.

Yeah!!!

I've never been so excited about this before but I just (in order to not offend anyone, please pick your own term) ...

backfired
baked a breeze biscuits
baked brownies
blew ass
blew a gasket
blew the sparkplugs
boom-boom
broke the seam
broke wind
busted a grumpy
busted ass
butt yodeled
cleft a boofer
cracked ass
cracked the ripper
crop dusted
cut a gasser
cut a melon
cut one
cut the cheese
droped a fart
erupted one
executed one
fluttered the sheets
let Fred out
let one
let one rip
let wind fly
made a bingo
made a stink
passed gas
piffled
played the butt trumpet
pooted
pop off
rip ass
rip one
rip the canvas
roared from the rear
shoot the breeze
sunk my battleship
sneezed in one's pants
split the seam
started a Harley
started the engine
step on a duck
step on a frog
stomped on the barking spider
stripped a gear
supplied it
tainted ripper
tooted
vented

YEAH!!! The tube can finally come out. Ok ... No more talking about this kind of private stuff. It's not like I want the whole world to know. I'm shy.

Antsy Pantsy

We are both getting a bit antsy. We are ready to feel great and go outside and play. Patience is a virtue and we keep trying to remember to take deep breaths, get good rest and soon enough we will be home. Home sweet home.
Mark is looking great. And he is using the morphine much less. He has gone on four 30 minute walks today. Once he stinkers he can get that darn tube out of his nose. Do you know how many times I have gotten annoyed when he rips a stinky fart at home and now I actually found myself praying earlier today for Mark to fart. Even I see the humor in that. So on that note everytime you fart tonight think of Mark (heehee).

Thank God Its Friday

So we made it thru to Friday. Day 4 and counting. I am at work so I haven't seen him yet. Mark reports that the pain is pretty controlled but he can't move around super well and sitting up or getting out of the bed is painful. The goal today is to walk the hallways 3 times... Mark said, "no problem" and he just wants to do whatever the doctors want so he can heal quickly. He was disappointed to find out that they will not be removing that tube from his nose until tomorrow and he won't be able to go home until more like Tues or Wed.

The baby is doing good. He is still getting up 2 to 3 times during the night though. Thank god for my mom and sister taking turns sleeping over our house and helping me. There is no way I could have gotten thru the week without some assistance. My other sister has been doing the "swing shift" between when the nanny leaves and I get home from the hospital. And Lisa offered to watch the baby on Sunday during the day- which is super helpful, so Jeremy and I can watch the SuperBowl with Mark at the hospital... GO GIANTS :)