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.
Katy, I'm humbled at your courage to go ahead and do the radiation, too. The way you argue it, the logic is obvious, but boy does that schedule sound grueling. Power to you!
ReplyDeleteHi Mary - Thank you. I have to say I am not daunted by all that the treatments entail, I am not one to weaken easily. What scares me is whether this choice is the right one.
ReplyDeleteI don't know if it is the right choice or the wrong choice and it seems the brilliant Barrows doctors and tumor board are not sure either, but your decision is exactly the decision I would have made. Just nuke that &^%%$ into submission. Sending positive thoughts. Amy D.
ReplyDeleteI agree - give the £%$*%^(**& tumour a blast of everything you can. xxx
ReplyDeleteNot sure if you remember me Katy. We were on the July 03 board with our boys. I am SamanthaL with Luke.
ReplyDeleteI just wanted you to know I have been thinking about you. I am praying that you get the "excellent" you deserve. I know I am far away but if there is anything I can do always ask.
Hugs. Sam
Of course I remember you Sam, and thank you for reaching out, it means a lot.
ReplyDeleteKaty
Medical science is not a hard science, but it sounds/feels like you are making the right choice. There will be less "what ifs" this way down the road knowing you did everything you could have done when you first knew about it. **hugs**
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