Anniversary Weekend
Brain Tumor Vaccines, My Story April 20th, 2009
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My wife and I had a great weekend. Our 8th Wedding Anniversary is actually today but we celebrated it over the weekend. It was so nice to get away. We didn’t go far – stayed right here in Sacramento in a very nice hotel right on the river near Old Sacramento – a great place to walk around and relax. The picture shown is from our room – a great view of the river, the Tower Bridge and Raley Field, home to the AAA Sacramento River Cats off in the distrance. I booked a suite for us and our entire stay was so nice. For any of you that have kids, just a nice away together is wonderful.
Things have been going great since I started the vaccine. I’ve had two vaccinations and I haven’t had this much energy and felt this good in a long time. My third vaccination is tomorrow so I will leave a post about that. My understanding is that KCRA will be there, the local NBC affilliate so more exposure to brain tumor survivors about this treatment and not being alone in this journey in the media is fantastic.
On the more challenging side of the equation, I did have another focal seizure at work today. Same time, same conference room, same staff! I’m changing the meeting venue! I haven’t had one for awhile and I’ve been steadily inreasing the Keppra component of my dosing in anticipation of increasing seizure activity as a result of the Gamma Knife surgery. I’m about at the max dose for Keppra so I’ll have to find out where we go from here. You might recall that I had pushed Lamictal up pretty high at one point and ended up at a toxic dosing and in the ER with an awful case of vertigo. I couldn’t even open my eyes. So, I’ll work with my neurologist to further control this.
More to come on tomorrow’s vaccinations. I will also have my first MRI since starting the DCVax vaccine here soon.
Regards,
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Mark, great to hear that you have so much energy. I know it must have been nice to get away for your anniversary. I know the seizures are upseting but hopefully they will stop. It seems my husband Marc lives with the vertigo but has not had a seizure since Oct. Marc is going away for 3 days to do a little fishing and whatever they do in the woods – maybe track turkeys. Ha. I am a wreck because I feel I need to make sure he gets meals and medicine, etc. He was unable to get the CPT-11 last Thurs, due to his low wbc count. But he did get the Avastin. Next week he is scheduled again for just the Avastin. Our NO said that possibly he will get the 2 together again around May 14. Thats all we have planned. We are talking about a trip to MD Anderson Houston for another opinion. Not sure we want to do any trials. Good luck this week. Hope your vaccine went well. Will be waiting to hear your latest. Stacey – Baton Rouge
Mark –
A little late, but Happy Anniversary for you and Rachael. I’m so glad that you were able to get away and enjoy some time together.
Praise the Lord to hear that you are feeling better, with more energy than you’ve had in awhile. We’ll continue to lift you up in prayer as you work to control the seizures.
Thanks for your updates.
~ Sara