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.

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.)

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!