More on Proton. Pretty awesome machine, huh? I’m still trying to take it all in (literally and figuratively) The proton beam actually comes from another place (something like a power plant outside the building from what I can gather.) It goes into one of three rooms to zap a patient. The techs put heavy copper plates inside the box on the left (top pic) that have been designed especially for me that have tiny holes in them to send the proton beam exactly to the right place. The gantry…that huge thing around me rotates around and the sides rotate too until they can aim it right. I found out today they’re sending the proton through my back at oblique angles. I’m not sure how that works since it seems as if I’m lying on something solid but what do I know. I’m lying in a head and shoulders mold that they made during my simulation to get me situated just right. During the session, the gantry rotates but it feels as if I’m going around.
On my first day, Stephanie and Diana, the afternoon techs, told me that they would be in the control room during the actual session, coming out just to change the copper plates. They’d be working, they assured me, on the computers to make sure everything was right.
Sure, I said, I know. You’re going back there to text your friends to decide where you’re all going tonight to party while I lie here with my hands over my head trying not to move for 30 minutes.
Right, said Stephanie. We might skip out and get a bite to eat, too, if that’s all right with you.
I saw Dr. Nguyen (my radiation oncologist) today. She looks about fifteen (well maybe twenty) is 38, brilliant and knows her stuff. She will see me once a week…check on side effects, problems, etc. I had a few questions…some about me and some about proton in general. I’m still not clear on a lot of it but slowly but surely I’ll get it.
One thing I asked her was if she knew why I had been approved for proton.
Because you’re one lucky lady, she said. It’s probably that you have a really good insurance company (Tufts is my supplement..thank you Longmeadow)
Why, I wanted to know, isn’t proton recommended for every kind of cancer?
They wouldn’t pay for it.
But if they would, wouldn’t it be better?
Not necessarily. Every individual is different. I work up the plan both ways..proton and traditional radiation and then decide.
And for me it was the best option?
Because of the location of your tumor. It’s very close to the heart and lungs.
(I didn’t ask this but proton is only used for particular cancers…a biggie is prostate. I’m not kidding…it’s me and the old guys in there every day. Today, twice, nurses and techs thought JERRY was the patient and not me)
But if insurance would pay, wouldn’t proton be better for everyone?
They won’t., they never will, it’s too expensive..
So, I’m still not sure. If proton is as good as they say it is, wouldn’t it make sense that in a perfect world (okay we don’t live in a perfect world) that EVERYONE get proton if they need radiation? I don’t get it.
Oh well, I keep learning a little every day.
I met with a nutritionist today. I’m still losing weight…about 16 pounds since September…and they’re concerned. (I’m not…I’m delighted…I want to stay this weight forever) So the nutritionist gave me all sorts of material on foods to eat …high calorie as much as possible. Add sour cream to that baked potato. Make cream sauces and gravies for foods. Eat ALL the time.
I couldn’t stop laughing. I worked so hard to LOSE weight and have been so conscious of NOT eating too much or bad stuff or whatever and feeling guilty when I pigged out and all of a sudden fettucine alfredo with or without broccoli is a great idea. I told her I am going to need to totally retrain myself after this is all over. But for now, until (I guess things get rough even with proton) it gets painful to swallow, go ahead and pig out. Too bad I’m not all that hungry…but I do like pasta….and my brother, John, chef extraordinaire, has offered to come and cook for a few days. Life is good.
I might actually give you a break and NOT write tomorrow. My poor sister, Kim, is printing these all out to send to my mom and said she was sick for a couple days and had to print out four and the envelope needed extra stamps. I do go on and on. Enough for now. I need to put away some laundry.