Moving forwaed with proton Therapy, Fed up with medical treatment

I had the proton mapping session last week where they make a mask  that holds my head in an exact position in the proton machine. and take a cat scan to see where my tumor is relative to the machine.

Me strapped into the proton machine. Note I am sitting up as opposed to lying down.

its quite daunting compered to the Radiation machine I encountered back in 2010 that resembled a cat scan or MRI machine. The proton machine is huge with a cannon-looking barrel hanging from the ceiling. It felt like a huge gun was pointed at my head. No pain or anything, just creepy scary. From here, it takes a couple weeks to program the machine to position the gun and determine how to shoot protons such that they land in my tumor.The nurse called yesterday and said the first treatment will probably be in the beginning of January and each treatment will probably start between 4 ab 9 pm. that time frame is kinda of a drag because it is very inconvenient to the people giving me rides. I hate to be a burden, and this will be 5 times a week for 5 weeks.

I tell ya, I was on the edge  of deciding not to do this poton therapy. I am pretty happy with the state of my current capabilities - being able to see and move around. The radiation oncologist said there will be some collateral damage in the ares around my new tumor, left body motor strip and optic nerves., but he added "I'll do much less brain damage that tumor will do left untreated." He was not willing to give an estimate on how long this treatment will hold back the advancement of the tumor.I was also concerned about the cost and and reinsurance pre-approval. the business office guaranteed that even if denied by the insurance, all I will be responsible for is the deductible and max OOP, they will eat the costs over that, but this is still several thousand dollars. Past all this, there are really no other treatment options at this point.

They also want to continue Avastin during the therapy - but I plan on refusing this. The biggest problem I have with Avastin  is the mouth sores that bleed especially when I eat anything remotely crunchy. I also makes me very tired to the pint that I fell asleep while jamin' to ZZ Top yesterday.

My cognitive skills are degrading to the point that I really can't do my programming exercises on my  computer. This took a lot of my day which now leaves a big void. I'm extremely bored these days.

Another factor in my trepidation deciding to do the proton is my growing disdain for the medical field. I am continuously catching mistakes. I ordered a refill of my seizure medication   and was very clear what pharmacy to send it to. the pharmacy calls me up and says the insurance was denied because they are not contracted to dispense that medication. this is BS - they filled it before. I end up arguing with them to convince them that they are telling me can't be correct. very frustrating and makes me angry that everywhere I turn people can't do their job. Another bigger example is that when I first complained to my neuro-oncologist about what the Avastin was  doing to me (besides not working), he said that he would reduce the dose and frequency.At the next infusion two weeks later I asked the nurse to make sure the dose had changed since last time. Guess what? NOPE.How am I to trust these people going forward? A constant source of angst.Is the proton plan the right dose? pointed at the right location? If you have read this blog from the beginning, recall the doctor got me confusec with another patient and mistakenly put me on chemotherapy for 7 months. All this makes me want to st fck it, let's just let nature take its' course. I think I would be a happier person compared to the bitter, paranoid state I am in now,.OMG typing a PIA, sny word thsf uses a key on the left hand side of the keyboard getd secrewed up. time for a nap, have a Merry Christmas and Happy New YeR!

Avastin not working

MRI last week has shown the tumor has grown 10-15% compared to MRI 8 weeks ago.It's smashing into the left ventricle (cavity that holds spinal fluid for the brain) . you can see the ventricle as the black areas in the pictures in a previous post:
https://edslas.blogspot.com/2018/09/recurrence-three.html

The ventricle by the new tumor now is almost smashed closed. I guess I'm kinda lucky it smashed into  fluid filled cavity, smashing into brain tissue would lead to further neurological problems. Currently, my left leg is getting more week and has loss of sensation. A couple days ago while trying to change shoes, I tried to put on my new left shoe before taking off the old one and could not figure out why it would not go on. I walked away with two shoes on my left foot.

I am meeting with a radiation oncologist on Monday to talk about the possibility of proton therapy. I was told back in 2010 that this was not an option because my tumor was too big for the very precise proton therapy. Now I have a bigger tumor,  it'll be interesting to hear what they have to say. I am also concerned if insurance would cover it. I've read stories of people paying for it out of pocket.

It will be an interesting couple months.