Friday, August 22, 2008

Change of Plans

Well, just when I think we have it all figured out, the plans change! We visited with the neurosurgeon on Thursday. We thought we were going to get a surgery date for sometime in Sept. since my rheumatologist said he felt comfortable with weaning me off two of my chemo drugs. His thought was that I would wean off one of them for about two weeks, then the other for about a week - check my status and then have surgery. The neurosurgeon wasn't comfortable with that. She wants me to be in remission without the drugs as a maintenance. So, she said she would consult with the rheumatologist. Today I got the call. They have decided they are going to wean me off the prednisone and both chemo drugs. Then check how I do before proceeding with surgery. I can't go back on the chemo after the surgery. At least not until I heal. That is one of the reasons the surgeon wanted to make sure I was really in remission - not just in remission with the drugs helping me out. My body has to be strong enough to handle the surgery and allowed to heal without getting a flare with the vasculitis. The first drug we are weaning is the prednisone. It will take about 2 months of tapering before I am completely off of it. Then I need to see how my body reacts for another month, then meet with the rheumatologist to come up with the plan of how to get off the first chemo drug. That may take several months. Then we will work on tapering off the other one. IF I stay in remission after that then they will schedule surgery. So instead of Sept. we are looking at possibly next spring or summer. While I understand the need to wait, we are disappointed. We had hoped to finally get this behind us and not feel like our lives were on hold still. The tumor has increased in size but I still show no neurological symptoms. If I do start showing any symptoms, the surgeon said all bets are off and we go in right away to remove the tumor.
We did discuss what the surgery will involve. Kind of scary (and I won't tell you the gory part - lol). The tumor has now wrapped around my carotid artery, it is also intertwined with the nerves on the right side of my face and behind the eye, and it is now also resting next to my brain stem (yes, this is not good). Therefore, she will be only taking out part of the tumor that she can safely take out without damaging my nerves, etc. Hopefully then that will be all. I will have titanium plates in my head after the surgery (just think when I get to spar again, the kicks to the head might not hurt now :-} The part of the tumor that is removed will have to be biopsied. She said she is not convinced now that it is 100% dermoid. If anything show up as not benign, then I will have to undergo some MAJOR surgery that would also involve reconstruction of my face. So we are praying that everything will come back as benign. If it is all benign, then we will have to continue to monitor the part that is left for pretty much forever. If the parts left behind in those critical areas start to grow or become larger again, then we will have to do to the major surgery. So, again we pray this doesn't happen!
When I asked her how long I will be in the hospital for the surgery, she said most patients are in for 72 hours. However, she said with my vasculitis I am "complicated". Therefore, I will probably have to stay in the hospital for about a week. Then for recovery time at home - she said that no driving whatsoever for at least a month and that to resume normal activity will depend on how my body heals and what happens due to my vasculitis.

I think that about sums it up for now. Please pray for my doctors to have the wisdom they need to treat me effectively, pray for me not to flare up while tapering off my drugs (if I do flare that will cause the surgery to be pushed back further & I might have to go back to infusions rather than the pill form of drugs), pray for the best case scenario with the removal of the tumor, and please pray for my family and I to continue to have strength to positively deal with the situation. Our God is an AWESOME God, and I know he has a plan for me and my family.

Sunday, August 17, 2008

Busy Saturday

Saturday we got to head over to Melanie's and Jill's for a old neighborhood party. Linda/Jerry and Beth/Mike were even there! Their house is beautiful. It has some pretty awesome features. Like Carlie's hidden closet, the loft area, the extra kitchen, and the deck/pool area. The kids had fun swimming and playing. The rest of us enjoyed catching up with each other. Of course there was tons of great food to go along with the conversation and laughs. I hope to get some pics to post from Nancy. After that gathering we went to Lee's Summit because Kelly is back! It was great to see him and I am sure his family is loving him being back home safely. Didn't win at the cards last night, but it really wasn't my focus, so that's okay...

Sunday, August 10, 2008

More Lake Pictures!

These show a bit of the lake as we sped along - can't say I had much control over the camera as I tried to take some shots. Oh well, you get the idea! The one of Todd and I shows us at the end if the day heading back to the docks. You probably can tell I got a bit of sun.... Got the raccoon eyes when I took off the shades - LOL

The Lake!

Yay! The weather was gorgeous today at the lake. We went to Smithville lake where Beau keeps his boat. The set up was awesome! You could live out there with the accommodations some of them had! Anyhow, after we got loaded up, we headed out in Beau's Presumed Innocent. We ended up in a cove area and tied up with a bunch of other people who he normally hangs out with up there. I think we eventually had about 8 boats all together. We just hung out on the water and the kids had a blast swimming around. The water was perfect! I tried to take some pics, but it was so hard to see what I was aiming at, so I didn't take very many. Here are a few: Starting at the top - the kids loved floating around on that big air mattress like thing. It was a hoot when we pulled Nicole on it when we left the docks to get to the cove. It was a handy sucker to lay out on in the water. Then the next couple of pics show some of the people we were hanging out with. The music was blaring, the water was perfect temp., and got to laugh and relax all day! Even the dogs got in the action! Last pic shows Todd and Beau talking about something important, I'm sure. =)

Saturday, August 9, 2008

A Night Out On The Town

Todd has been working some long hours lately at work. He has been able to fix a bunch of different issues and so his bosses gave him two $100 Night On The Town certificates. Todd wanted to use one with just the two of us, and the other for us and the kids. So tonight we did the family night and took the kids to Dave and Busters! We had a great dinner and then played for about 4 hours!!! Morgan liked the games where you won tickets (Deal or No Deal, Spin to Win, Skee Ball, Gone Fishin, etc). Tyler liked the car racing and shooting games. Todd liked the Daytona 500 car racing game also. There was another one where you pulled a helmet down over your head to see the screen. You stay standing up and you are able to rotate all around to see the planes and such coming in that you are to shoot down. I liked the car games the best also. I really enjoyed Need for Speed/Fast and Furious. The games were linked so you could race with each other and the seats took you for a ride as you raced. FUN! The place is like a big arcade place for adults (kids have to be there with someone 25 yrs or older.) They had good food and a fun variety of drinks. It was a beautiful night outside, so afterwards we walked around Legends a bit and then headed home. Best thing about the night besides having so much fun together was the fact that it was "free"! Now we need to plan for the other certificate for just the two of us to have a night on the town!

Now we just need to keep our fingers crossed for good weather tomorrow so we can go to the lake and ride in Beau's boat!

Tuesday, August 5, 2008


Sunday after church we went to our friends' house and had the delectable samosas! For those of you who have never had these treasures - yum!! My favorite are the spinach, bacon, tomato, feta cheese, and pine nut ones. For sweet, I love the dark chocolate with cherries. When I am in the mood for spicy-- the meat ones can't be beat! Samosas take some time to put together, but more than worth it!

Saturday, August 2, 2008

Lottsa fun!

Good times tonight! Went to listen to some music tonight. Fun band. Got to dance a bit! Also fun "talking" with brother and sisters!