Thursday, July 21, 2011


The lack of sun does not help my mood. Even for a dyed in the wool Northwesterner this wearher is getting to me. I need some sun and warmth and natural vitamin D. Kind of ironic when your wife has melanoma, I realize.

But this weather coincides with an in-between time from a disease progression perspective. I'm not on red alert dealing with a hospital situation. I'm not even on yellow alert, having to worry about her every move. She's feeling pretty good physically and hanging in there emotionally, good days and bad. But the chemo (Temodar) she is on isn't generating side effects of note (and we can't tell if it's working) and she seems to have adapted to the other medications even though they do have side effects.

I've done about all the research I can do and talked to all the people I should and have all the questions written down for Kaplan and have laid out the "if-then" scenarios. There is really nothing I can do until the 1st and 3rd of August (brain MRI scan and results day and what to do next day). It's definitely the calm before the storm.

But for someone who has thrown everything I can at the situation and has given up any other purpose driven activity, it's a little disconcerting. I think work of some kind, paid or unpaid, is a part of who we are as humans. I've certainly been acculturated that way besides.

Now if it was nice and sunny out I could pretend it's summer vacation and just relax and read summer froth and enjoy. But it's not, or hasn't been. I can't go anywhere - I need to be with Meagan and even though she has visitors and I can arrange sitting time and she is arranging things that give me some hours here and there, it's not possible or desirable to have anyone else here for big chunks of time. She needs her own private time, reading and bath time, or starting to work in her studio to finish up some projects. So as close as someone else might be it just doesn't work to pull someone else in to our home (so DON'T take this as an invitation to offer, thank you kindly). It's just an observation about reality and the reality is I need to be with her.

So the net of it is that as the primary caregiver there are lots of times when your hair is on fire and you don't have time for anything else but cabana boy duties. Then there are times like now when not much is happening other than the occasional emotional storm. And it gives you time to think, about the future, what you could be doing if you were unfettered, and what is important. I did "drop out" of the philanthropic and nonprofit world, work I really enjoyed. I miss it, especially now.

If that damned sun would come out I probably wouldn't be feeling quite so blah. Well, we are going to see the last Harry Potter movie in an hour; that should help!

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