Sunday, August 7, 2011

What day of the week is it?

The days seem to sort of blend, except for particularly momentous days (scans, results, treatment). It doesn't matter much whether it's Monday or Thursday - because it is always Cancerday. And that means a regimen of pills on schedule, making sure appointments are organized, providing reassurance and memory support, "hovering" somewhere within spitting distance or making sure someone else has the baton (in case of emergency - and given she has the three new brain tumors, the risk of something happening went up), and responding to questions. It means putting on my coat of armor to handle the emotional ups and downs, as well as helping her keep hers on.

It's been more challenging of late. Not just the finding of more brain tumors and the upcoming Gamma knife radiation and making sure I know what that is all about. Not just the issue of helping her process this new news and find a way to have some optimism and a way to live each day given this awful disease and how it's presented itself. Those are all bad and sucky in and of themselves. But she has definitely been more loopy, forgetful, and having a harder time getting meaningful, logical sentences out. Not all the time, but more often. For a while there it seemed to be related to fatigue because it was more noticeable in the afternoon. But lately it's an all day thing, and she even mentioned it this morning  - how she wasn't feeling as sharp. It could be any number of things - delayed response to the stroke or last radiation, a change in medications (we just weaned her off one of her anti-seizure medications - even a reduction can have an effect), or maybe the cumulative effects of the chemo (Temodar).

But it is hard (I'm using this word a lot - need to look up more synonyms) for me, and the boys, when she isn't quite coherent at times. I don't want to correct her or get her frustrated with the condition. So I'm trying ways to "reinterpret" her statements so it sounds like she said the right thing. Like a while ago, she said so-and-so was coming to our house at 9:00 tomorrow morning to go for a walk with her in our neighborhood and would pick her up at 10:30. I replied, "right, she will have you back here at 10:30 so I can take you to your appointment". Meagan said, "isn't that what I said?". "Almost", I replied. I think she's getting used to the situation, so she isn't pursuing much anymore figuring out exactly what the missing or incorrect communication was. Because it is occurring quite a bit more. And I know her communications to some people over the phone when leaving a message have been a bit...rambling.

So it not only is getting more difficult to make sure we are on the same page about particular issues or situations, but it affects the nature of our relationship. I'm even more of a caregiver than I was before. I mean, it has happened before such as after her stroke, but those times improved, and I could see and hear the progress. Here it's feeling a bit more like sliding backward, without a known reason, and even though the Gamma knife isn't supposed to leave much in the way of side effects, you have to wonder if there isn't a little bit of a probability given they are not just hitting the tumors, but some margin around the tumor (which are healthy, presumably functional brain cells).

There's not much else to do but press on. But I worry about this development.

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