Wednesday, June 25, 2008

We're Here!!!!

Made it to Little Rock with no problem! Had fun drive down. We stopped at Lambert's. Too much food! Did some wine tasting of St. James wine - about the only kind of wine I like. When we got to the Peabody, we saw some tkd friends wandered about a bit. Tomorrow we are going to do the touristy things and practice! Soon the fun will really start!

Monday, June 23, 2008

The Bucket List

We rented this tonight. I really enjoyed it. It did hit close to home at some points. When Morgan Freeman's character described what chemo treatments were like, he hit the nail on the head. Brought back some memories of my infusion treatments and how I felt the 3rd day after - hard to believe the stuff was saving me! Both of the men undergo brain surgery. I was told I wouldn't have to have my head shaved for it, like they did in the movie. Probably did that for the effect. The movie certainly had us laughing at moments and deep in thought at others. I think some of it got to the kids. Again, too close for home in some parts. Not sure what I would put on my bucket list. Maybe I should start one and start doing the things on it. I need to look for the book that was mentioned in the special features. Sounded interesting. I do know how I would answer the 2 questions asked in the movie. How would you answer them?

1. Have you found joy in your life?
2. Have you brought joy into others lives?

Sunday, June 22, 2008

And everyone was...

Kung Fu fighting! I loved the movie - Kung Fu Panda. We had a great time with the kids today - shopping for clothes they desperately needed. Saw the movie and then ice cream at Sheridan's. Good day! Now it is time to get seriously thinking about Worlds. Can't believe we leave on Tuesday already! I also can't believe it has been a year since I competed. I hope I make it through my forms and weapons without making too huffing and puffing! Can't wait to have dinner Thursday night at Laurie's house. It will be great to get together with a bunch of TKD ppl from all over away from the tourney.

Monday, June 16, 2008

Some of the great food places...

We had a great time trying out a variety of restaurants and bars in Rochester. Good food and such for sure! Victoria's was a fabulous Italian place. Huge portions so you need to plan on splitting a meal and still be stuffed! Honker's was fun - had great seasoning to add to your food - we even bought a bottle of it to bring home. McGoonies was a great place to get fish n chips - they also have a comedy club there! Whistle Binkies on the Lake was an interesting place also. Had beach volleyball set up outside. Also had an enormous beer menu. It was in a book of about 15 pages of different beers they serve from all over! Todd really liked that place :-)! Good thing we did a lot of walking in Rochester with all the good eating!

KU Med

Had my first visit back with my drs. at KU Med today after Mayo. They were excited that I got to see Dr. Specks at Mayo and were pleased that everyone had the same idea on where we were with the Wegener's. Left feeling very optimistic that we might get to have the brain surgery set soon. Hate that I still need to be on prednisone because of the effects, but if it continues to help keep me in remission, then so be it!
Time for another photo from Mayo trip.... (While I still am very happy with the care I am getting at KU Med, the place pales in comparison with Mayo.)

The first picture is from the center of the "shopping plaza" area toward the Gonda Building. You can also see one of the skywalks that helps connect all the Mayo buildings. (They also have underground subway connections.) Pretty cool! The second picture is looking up at the Gonda building. It was amazing. The curve glass walls were gorgeous. Right now the building is 20 stories. It will eventually be 30 stories high. It is connected to the Mayo building and has a great view of the Plummer building (especially from the 18th floor where I had several appts.)

Wednesday, June 11, 2008

First Picture

Just wanted to see if I could upload a pic.  This is not the most impressive pic, but it tells you what it is - lol!  I have tons of pics to add.  Maybe I'll add one with each post - we'll see!

Tuesday, June 10, 2008

The VF site

Had to add this link.  Please check it out!  The Vasculitis Foundation - see how you can help!

Mayo Clinic

Where to begin? Mayo is unbelievable. I can’t wait to download my pictures. The doctors we saw were awesome and the place was top notch. Dr. Speck’s was able to pinpoint the type of vasculitis I have (WG) and offer us a plan of what to do next regarding treatment. The neurologist and neurosurgeon had different ideas regarding my brain tumor, but the neurosurgeon at Mayo had a closer opinion to what we got from the neurosurgeon at KU Med, so I think we will go with that. We know more of the risks involved with the surgery, so it does give us pause, but right now we need to focus on staying in remission with the vasculitis. Then worry about the other and how I will get through it. The International Vasculitis Symposium was a great benefit to go to while we were in Rochester! It amazed me how things all just seemed to work together to put us in the right places at the right time and to meet the right people at the right time. We had a chance to listen to many different doctors who have been studying and researching vasculitis. We also had a chance to meet people from all over (US, Europe, and Australia) who have very similar stories as mine yet were further along in the process and could help me understand more of what to expect and make sure to do/not do. I hope to keep in contact with some of the people we met. I also plan to try to get involved more with the vasculitis foundation. The work it is doing to try to get people and healthcare professionals educated is outstanding. They also help raise money to be use for research. There is no cure for vasculitis yet, but with research we can get to that point. The overall theme this past week was HOPE! While we know more of the downside of the disease, and how close I was to dying, we gained more hope that I will continue to improve and be able to control this disease. A big thank you to Joyce for everything she did for us!

Monday, June 2, 2008


Holy cow, this place is amazing. It is huge and doesn't feel at all like a hopital or doctor's office. It is almost like being at a fancy hotel. I can't wait to download pictures. Started the day with checking in and getting my schedule - looks like a passport thing that tells where to go and when. Then went to the Hilton building for bloodwork. Next to the Mayo building for a body CT. Then I will be going to the Gonda building for a MRI. Ending today with a consultation with Dr. Specks. I hope that he can pinpoint more precisely what needs to be done to get this thing into remission so I can then get the brain tumor removed! Again this place is amazing! I am in awe at all the architecture and art. Glad I brought my camera - LOL!