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Jan 5, 2018 Latest post:
Mar 5, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. On December 18th I found out that I had a brain tumor. I had been experiencing head aches for a few weeks and a trip to the ER quickly revealed a mass in my brain. Surgery to remove the tumor was immediately scheduled for two days later, Wednesday the 20th. The surgeons were able to remove 98% of the tumor during surgery, luckily the tumor was in a place that was easy to get at.
I was able to leave the hospital 2 days later, Friday the 22nd with nothing more than some dissolvable stitches. The tumor was sent to the pathologist to determine exactly what it was. I was able to enjoy the holidays with my family and friends. I no longer have head aches and I feel great.
On Tuesday the 2nd we met with the neurological oncologist where we learned that the tumor was Glioblastoma. Not what we wanted to hear. I will refrain from listing the specifics of this type of tumor here, everyone knows how to use Google, if you are so inclined. I will tell you, that no matter what you find on Google we intend to be in the minority on this. We will fight with all we have.
At this point we know I will be having 6 weeks of chemo and radiation. This will more than likely start on or around 1/22. They have to wait a month after surgery for it to heal before they start the radiation. The radiation will be 15-20 minutes a day 5 days a week. The chemo will be a pill I can take at home. I have been told the side effects from the radiation are basically just fatigue, more so the last two weeks and the two weeks following the 6 weeks. When that is done I will have a 4 week break from any treatment. After the 4 weeks I will begin what they are referring to as "maintenance chemo" where I will take the same pill for 5 days then 3 weeks off, then take it again for 5 days, and another 3 weeks off, and so on.
On Friday the 5th we meet again with the neurological oncologist and the radiologist to go over the treatment plan in more detail. They are currently conducting a few clinical trials in the treatment of this type of tumor that we more than likely can participate in. One is some sort of device you can ware on your head called Optune. Again, you can Google this and find out more. Another is increased dosage of radiology, however we need to speak with the radiologist more on this one as there are some potential side effects with this. There is also another one, but we are waiting to hear back to see if we qualify for it based on blood work.
Right now I am feeling very good. I have no pain at all and hopefully I will be able to drive again next week. I am currently taking anti-seizure medicine, but will be off that by next Wednesday, Once I am off that and do not have any seizures while stepping down my dosage I am cleared to drive.
We will post an update after our appointments on Friday.