20? Did he just say 20?

It was a long weekend, and an even longer Monday. I had convinced myself that no news was good news. Then I finally go the call. I was in the parking lot of the grocery store at about 5pm Tuesday. I had waited and waited and finally thought "it must be nothing" and that I would have heard by now if it was. So I packed us up to the store.

I could tell the minute he said hello that it was bad news. I had prepared myself for what I thought was the worst, a couple spots, cyber knife, you'll be okay. What I heard was something that I didn't even have enough of a concept of to create a nightmare. "Multiple spots, you need whole brain radiation". I was stunned. I did not know what to say. Horns were honking around me, my son was listening carefully. In that moment time stopped for me.

So I ask; what about cyber knife? He says "no, there are too many". I ask "how many?" I can tell he doesn't want to say, so he says "it just says multiple". I ask, "like what 4 or 5?" He says "no, like 20... but they are small and widespread". 20? I cannot believe he just said "20". He says that cyber knife won't work on that many and I need to start asap. They will make appointments for me and call in a prescription for steriods to help with brain swelling.

He says that word that I now find to be the magic one "treatable". I know that means we cannot cure you, but we can kill this stuff and give you some time. It may or may not come back and we don't know if or when it will. Time. I've now come to the point where I am fighting for "time". Damn. These won't kill me, but may have shortened my life by a few more years. I tell him I'm "okay, as long as it is treatable because I need to be here for awhile longer.." He says "yes I know, and I promise we will do our best for you". I tell him to have a good vacation because I will need him to be fresh when he gets back.

Whole brain radiation scared me. It came up in my previous google searches and it sounded so aweful I skipped over it and zoomed in on the cyber knife. Now I had to go back and read it. Too many images of things like Young Frankenstein and bad looney tune cartoons.

The next day I get a flurry of phone calls and an insistant appointment for that day with the radiology doctor. I had to juggle a dental appointment to see him, but went back to get the dental work because you cannot have dental work while being radiated. Finally I arrive at the cancer center offices. It's a different one than I usually go to for chemo. It's a lot more fancy.

First I meet with a tech who takes my vitals and starts to explain the radiation procedures to me. And much to my relief; it doesn't sound as bad as I thought. About the same side effects as chemo, but they have drugs for those. Except for fatigue. Can't drug away the fatigue. It's highly targeted, not the "we dip your brain in acid" impression I had. I feel much better. After she was done I ask her, "So if you were me would you have this done?" I can tell this question shocks her. But to her credit she only hesitated for a brief moment, she teared up and said "yes, absolutely". She goes on to say "you are a single Mom, you need all the time you can get. I would do it without a doubt." I like her.

Next my radiation doctor comes in. I had met him a year before. He was the new shoe guy. He has changed a little. He wears Calvin Klein socks. No body here does that.. it amuses me. He goes in deeper detail on what is going on in my brain. "Yes, multiple spots, yes 20 or so," I ask him what size? and he says most of them are very small and pulls a pen out of a drawer to show me, about the size of the end of a pen or to me a sequin. They are the size of a sequin. Can't get the dancer out of the girl... Then he says one of them is bigger; "an inch across". whoa. an inch? Yes, an inch.

Based on all of this and my history he recommends whole brain radiation for 2-3 weeks daily, and then after about a month probably cyber knife on the big one. He says there is a possibility that the radiation will knock out the big one two, we just have to wait and see. I ask him about long term effects and he said some people do get memory problems like a year after treatment stops. He says you might forget names, won't be able to balance your checkbook... ah geez.. I can't do that now. Ask my accountant.

He offers to show me my MRI. I've never had a doctor offer to show me any of my scans before. I'm thrilled. I guess most people don't want to see them. He said "I thought you might.." so we go into his office where he pulls them up on the computer. MRI's are done in layers, like a cake sort of . I'm awed by what I see. He shows me layer by layer and I see at least 5-6 spots on each layer. It's everywhere... looks like my brain has measles. I think there is more than 20. I see the big one, it is f-ing huge compared to the others and sits right next to my brain stem. I'm stunned. Finally I say "okay, let's get rid of them".

A flurry of activity happens next. Appointment times get discussed, and somebody mentions doing my "set up" the next day. To do whole brain radiation you have to be perfectly still and they have to precisely aim the beams each time. So they achieve this by making a mask of your head that bolts you down to the table each time. I'm somewhat claustrophobic, I see trouble coming.

I was reasurred that I only have to be in the mask for about 5 minutes. I think that I can do. But nobody mentions the 30 minutes or so it takes to make the mask... So I showed up today to get my mask made. It's a soft plastic mesh that they stretch over your head. You cannot open your eyes and you cannot talk. You are bolted down until it dries. The tech suggested I take a valium before I come in on Monday. lol.

I'm over the drama now. I just want to get it done and over with. So I'll lose my hair again and be tired. Been there done that... I'm still going to do our Mother's Day business. I think that will be good for me and keep something positive going on while I'm being radiated. I'll probably to a smaller number of orders and enjoy it.