Rough Week

Hello everyone,

There has been a long gap since my last post because I have had some complications and delays with treatment. It will likely take me awhile to write this post because I cannot sit in front of a computer screen very long before I start to feel "funny".

I have had two hospitalizations in the past two weeks due to seizure activity and multiple medication adjustments with the keppra. Unfortunately, this last dose adjustment sent me reeling into an emotional state of complete distress and I spent two days in bed crying because I simply felt horrible. The decision was made to place me on an anti-depressant and anti-anxiety medication to help level me out and I am finally starting to feel better. The good news is that I feel better, the bad news is that the Keppra levels are still not adequate and I cannot go more than 6-8 hours in a day without "aura" onsets. I spoke with neurology in the hospital last week and asked if I had the flexibility to take an early dose if needed. The neurologist informed me that the metabolic rate of Keppra is anywhere between 8-12 hours, so if I needed to dose early I could. I started back to radiation after a 6 day hiatus this past Monday, only to have an increase in "aura" episodes which led me to having to stop radiation again on Wednesday. The plan is to resume Monday and I will see Neurology on Tuesday to figure out where we need to go with the seizure medication from here. I believe that once I complete radiation, the seizure activity will begin to improve as I notice a difference after a few days once the radiation is stopped. I suspect the radiation is irritating my brain to the point that it is causing these episodes to occur more frequently. My radiation oncologist does not believe this to be the case, but I can tell a difference and sometimes doctors don't know everything. I am currently taking 2,000mg of keppra daily (the max is 3,000) and I may have to have another adjustment when I start back on radiation Monday. The plan is to take one 1,000mg in the morning and then a 500 mg approximately 8 hours later. Then I will finish with the final 500 mg in the evening. I do better at night and in the morning because my seizure activity decreases significantly when I'm sleeping.

This whole process has set me back about a week on the radiation, so my new end date for radiation will be December 9th. It would be the week before, but unfortunately the Southwest Cancer Center will be closed Thursday/Friday for the Thanksgiving holiday (which will give me another 4 day rest break). I am still on track to finish Chemo November 28th. Chemotherapy has been much easier for me to tolerate than the radiation. As of today I now only have 2 weeks of chemo and 3 weeks of radiation. The only downside is that I am losing all of my hair (even though Dr. Fig said I wouldn't). He blamed it on stress and anxiety, but I'm pretty sure the chemo is playing a huge factor. I will likely shave my head this weekend when my friend Kyle gets in town. Jeramy is going to shave his head as well. I have been wearing Abbey Caps in the interim, which are very comfortable and cover all my bald spots very nicely.

When I first started this process, I thought 6 weeks would be a cake walk and I'd be done before I knew it, but as it turns out, 6 weeks is a VERY long time for chemo and radiation (especially because I have not been able to work this past week and a half). I am very grateful to be up and moving around again since this last medication adjustment and I hope that I can find a common ground on my seizure medication dosage to get me through this last 3 weeks. I have very much appreciated all your encouraging thoughts and prayers and comments and please continue to keep me in your prayers during this time. I have not been able to extend enough thank you cards and messages to everyone who has reached out to help and I apologize for that but I want you to know I am a little more encouraged with every message I receive. Your words mean more to me than you will ever know and I am so very thankful for you all.

I also want everyone to know that though I may get knocked down a lot, I will continue to get back up and fight. This tumor may take my physical abilities and may even break my spirit at times, but it will never break my will to keep fighting. I will fight this lying down if I must, but the message is clear that I will fight and I will win.