Palliative Care

I'm going to put this down just as quickly as I can and not worry about things like structure, direction, spelling or even making sense. I need to get the raw data down now while it's still fresh and then I'll visit it again, probably tomorrow, when I've got something to dress up the data and turn it into information.

I got off the phone with Mom a few minutes ago and I'm still in shock. I know I'm in shock because I feel exactly the same way I did right after I did around 1:15pm on Saturday, July 18th. That is, I'm not really feeling anything, I feel like the volume's been turned down on everything around me and I'm probably just dreaming it all. That'll pass but on that Saturday it didn't until about 10:00pm that night when Christine and I got a chance to talk alone in the kitchen as we were going to bed. So ... yeah, it'll take a little while.

Mom met with Dr. Kahn today and she said there was no good news. My mom tends to interpret things in a more negative light than ... well, than they're intended. I nearly said "than I would" but we know that's not true. If anything I've taken her mild pessimism and raised it to a level that could almost be called doctrine. Anyway, normally she would say there's no good news and then I'd be able to tease rather a lot of reasonably good news out of her. Today isn't one of those days.

Dr. Kahn pointed out what I've known all along and what I'm sure Dr. Rendon felt too but wasn't willing to make a final call on in Halifax. Mom's too weak to go through surgery. He took it a step further, though, and said that even with chemo he didn't think there was any chance they would or should do surgery, that it would unnecessarily add to her suffering.

I'm really going to hate words like that soon, I know.

Okay, so what did he say? He said he wanted a brain scan first. I think that's what Trisha asked about when I was back on the Island at the end of July.

Damnit, I never even started talking about that yet, the conversation we had with her and I forgot to ask Mom if she'd called Trisha yet. Probably not. I've got to do that.

Right, back to the point. I think that's what Trisha had been asking about, though she was talking about a PET scan and all Mom had done were a number of CAT scans. From the reading I've done on the differences, I suspect the brain scan they're going to send Mom in for will be another CAT scan because I think they're just looking for static information, is there a tumor somewhere in her head? and not whether something is constricting blood flow throughout the brain or whatever. But maybe I haven't a clue what I'm talking about there. Scratch that, no maybe.

Anyway, that's the purpose of the brain scan, to see if the cancer has spread there too. That's going to be scheduled sometime this week but we don't know when yet. After that she's going back to me with Dr. Kahn and then she'll have to make a decision about going into chemo or not.

Let me be perfectly clear on this point, too. She's considering refusing treatment entirely. In fact, if I were a betting man, I'd bet that right now she's going to refuse it. I don't know how I convince her to at least try the chemo -- or if I even should or if I'm only wanting to convince her she should for my own selfish reasons -- but I've got a very short time to come up with something.

After that? After that nothing. We do chemo or we don't. Surgery is off the table. Let us not speak falsely now, it's probably off the table for good.

He also took her off the prednisone, he said it wasn't doing her any good (to hell with that, let's hear a great big hell yeah for psychosomatic effects because it sure as shit appeared to be helping her when she ate most of that baked potato and a handful of my fries at Wendy's that night) and put her on something else today. She couldn't remember the name of it but they're getting the prescription filled out tomorrow morning so I'm going to call back tomorrow night and try to get more details then.

The title? Yeah, they're putting her on the palliative care list right now. I don't quite know what that means either and honestly I'm a little afraid to ask because palliative care sounds a lot like end of the line to me. I know it shouldn't but every other time I've heard that phrase it's usually soon followed by an announcement in the papers. But it's also apparently not what I expected, so (hopefully) I'll have to reevaluate what I thought I knew about it. They're putting both Mom and Janet on it so Janet can get some help with looking after her. I think this means she's going to be staying at Janet's place for the time being but Mom also said something about how being on the list might mean she can get into a ground-floor, assisted-living type place, which really doesn't sound too bad to me. I think maybe she's confusing some of the details, though, because she had been asleep when I called (just another little barb there, 9:00pm is not a time when my mother was ever in bed, she never turned in before 11:00pm, usually around 11:30pm) and I know she's having a hard time concentrating on stuff now. I hope it's stress, I know I'm not particularly sharp when I'm running on fumes and stressed all to hell, but that scan on her head ... I'm not surprised they're asking for it, I've been wanting to ask for something like that since mid-July and I think my sister has too. I think this isn't going to fall into the category of 'unnecessary tests'.