Showing posts with label radiation for low grade gliomas. Show all posts
Showing posts with label radiation for low grade gliomas. Show all posts
Saturday, September 10, 2011
Mindfulness
Several people recently have used phrases like "live in the moment" , "come to terms with your new normal", "be mindful".
This has never been me. I have always been a multi-tasker kind of person with my mind on the next thing, or even the next several things. I have never been a "mindful" person.
I am going to try hard though to be that person. I have been recommended the work of Kabat-Zinn which I intending to look into. The problem is that I immediately thought about downloading it to my Droid so that I can read it in spare moments while dashing around multi-tasking. I think I will get his Mindfulness for Beginners first:)
Radiation for Low Grade Glioma
I have made the decision to zap my brain with protons along with the Temodar chemo.
It is hard that no Doctor knows how to treat this so all decisions are up to you, the inexpert, unexpected patient. Two well respected tumor boards were split 50/50 on whether to defer radiation. 2 surgeons from the boards who are my contacts both recommended delaying.
What helped me come to this decision in the end was that the neuro-oncologist said that said she would give me Temodar but I needed radiation also. Then the radiation oncologist said that he would do radiation but also the chemo.
Even if my tumor does not change in grade, if / when it grows that it will cause more damage than the potential risks of radiation.
So, on the 26th September I go in to have MRI, CT scan and a mask molded to fit my face so that they do a model of my brain and also have a means of making sure my brain is in the same place each time that they zap me. They call this process simulation. We then head off for a weekend at Disney Land and when we get back all of the calculations and mapping should be ready for me to start treatment on the 3rd October.
I will have a total of 27 treatments carried out every weekday, meaning my last treatment will be on 8th November.
My good friend has taken the children to a water park and movies today so I am relaxing and digesting all of this. She also brought me some home made, organic bean and vegetable soup which Karl pureed for me and which I ate with seizure free pleasure.
It is hard that no Doctor knows how to treat this so all decisions are up to you, the inexpert, unexpected patient. Two well respected tumor boards were split 50/50 on whether to defer radiation. 2 surgeons from the boards who are my contacts both recommended delaying.
What helped me come to this decision in the end was that the neuro-oncologist said that said she would give me Temodar but I needed radiation also. Then the radiation oncologist said that he would do radiation but also the chemo.
Even if my tumor does not change in grade, if / when it grows that it will cause more damage than the potential risks of radiation.
So, on the 26th September I go in to have MRI, CT scan and a mask molded to fit my face so that they do a model of my brain and also have a means of making sure my brain is in the same place each time that they zap me. They call this process simulation. We then head off for a weekend at Disney Land and when we get back all of the calculations and mapping should be ready for me to start treatment on the 3rd October.
I will have a total of 27 treatments carried out every weekday, meaning my last treatment will be on 8th November.
My good friend has taken the children to a water park and movies today so I am relaxing and digesting all of this. She also brought me some home made, organic bean and vegetable soup which Karl pureed for me and which I ate with seizure free pleasure.
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