Wednesday, August 08, 2007

Caution: Human Moving Slowly

Since Monday it has been oppressively hot, getting hotter each day and more humid. Mario is having a short visit and was in Savannah GA before this, so he was not completely taken aback by our lovely weather (at this point, Sofie would point out I was being sarcastic, in case that was not obvious). So we Triangle folks are moving slow these days, which suits me fine. I can use the perfect combo for my excuse: the heat combined with the cancer treatment fatigue. Who would expect me to be bouncing around anyway?

It is so humid today that getting out of the air conditioned car, my glasses fogged up. Yesterday we beat the heat by being like good suburbanites: we went to a movie and the mall. I had held off seeing Hairspray until his arrival, it seemed to be a movie that wanted a gay boyfriend. So after chemo yesterday, we took off for the mall. And we had a great time, the movie was delightful and upbeat, something I need in a movie these days, and then we had a late lunch at an uncrowded Cheesecake Factory. I never go there because usually it is packed and the wait is over 40 minutes. But it was lovely in mid-afternoon. We had a hearty "lunch" and figured it might just take us through the evening too.

Even shopping was exhausting in this weather, just looking. We left to pick up Sofie from camp and got a phone call for a spontaneous birthday ice cream celebration in 45 minutes. What the heck, when it is 99 degrees, ice cream for dinner, even with a kid, sounds pretty darn good. So off we went to the ice cream place (the kind that mixes stuff into the ice cream for even more richness) and celebrated with Sharon. Sofie ate a real dinner at about 8:30 PM.

We all talked about the weather, the need to move slowly (this is a Southern thang for a reason). And we talked about me.

During lunch, Mario and I talked a lot, about folks "back there" in CA and about my recent news on the blog before this one. I guess people in CA who haven't seen me have a more vivid idea in their heads that I am sick and dying and look like it. The truth is about as opposite as you can get. This new drug is better nausea-wise, I feel fine pretty much, the steroids keep the appetite up, more than I wish, and I look "normal". And really, except for extreme fatigue and some neuropathy stuff in my feet, I feel pretty much OK. The overwhelming sadness of a few weeks ago is being talked through in therapy and the companionship with visitors makes it better too.
I did not want people to think I was going all Tammy Faye on them right now...believe me, if I have a significant weight loss, that will make it to the blog. After a lifetime of trying to lose weight, that would not be something I would keep private, I promise you.

My struggles right now, besides the fatigue, are trying to figure out the unfigurable: how long do I have and what the heck do I want to do with that time? There is the issue of working vs. not working, I am not quite ready to go on disability, but on the other hand, it is hard to engage at work. I feel like I am constantly starting over, and that is not good. Others have been more reassuring, saying that I need to look at what I have accomplished and that previous directors of development did not do what I have done. Which means they must have sat on their butts and done nothing, because I don't feel that successful, not by a long shot. I feel mostly like I am coasting and strategizing, but not implementing. And that is what I have to focus on if I am to continue to think of myself as actually working.

So that is the issue, right now. much, when I think it would be great to be more home centered with Sofie, come fall. So perhaps I will work it out so I use my better times (mornings and early afternoons) and then get her earlier than previously. That might be a solution for now. I want to spend time with her when we are both not tired and cranky.

I imagine I will get used to the fatigue levels somewhat, it is amazing what you can incorporate when it is simply not in your world to change it. And the drug they are giving me, Procrit, should kick in a bit soon, I hope, to raise those red counts. Now we just have to be super-careful about the white counts. Are you bored by all of this yet? I am but it is a regular part of my everyday life, so there you have it.

Sofie is finishing up with day camps this week and next Monday, we take her for a week at Camp Kesem. A sleep away camp, specially designed for kids who have a parent (or in her sorry case, parents) with cancer. I hope she won't be homesick, not too much, anyway, and that this experience will be good for her, helping her to open up. I want her to talk to me about her scary feelings if she has them. So far, I think she is protecting me and only talks about how I never have fun with her anymore, not ever! This is more her little stubborn seven year old self talking. The other day, the drama escalated to "you are ruining my whole life, Debra!" because I told her she had to go to tutoring even if it was hot outside.

But seven she is, the birthday splash party was fun, for the kids at least, and she was happily gifted with great presents. So all good. It is wonderful to see that she is developing these friendships with kids from both school and camp and that I can take a little peek at how that might evolve over time. I like it best when the kid has a cool parent, but sometimes, it is just about the children. And the parents, like one new couple we met via their daughter, might be as far away from someone who would be in my life as possible, but it kind of passes by that part, at least sometimes.

OK, time for a shower, and we are headed out for brunch and a rousing scrabble game. And then we will have a leisurely day. The only kind you should have when it is this darn hot!!!

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