Thursday, June 21, 2012

Happy Solstice + 1

It's already summer? I have no idea when that happened.  It's been gorgeous outside which means we've been firmly INSIDE.  With the beautiful weather comes the horrible allergies and all the fun associated with them.  Ah well.  We put the air conditioners in the windows and hope for the best.  Owen was going to do a summer camp but on the 2nd day he decided he's not up for it.  I wanted him to do it to give him something to distract him but since I signed him up over a month ago when we only had one major life altering thing going on and then it was compounded I don't blame him for wanting to opt out.  He said he can't concentrate and his reading comprehension is kaput and he was really overwhelmed.  I think he needed a break... so now I get him at home to do chores,  win/win!  hahaha

David had chemo yesterday.  It went well but he decided, with the Dr's input, to stop doing the at home chemo so no more Temodar for him.  The dr said it seems like it's doing about 30% of the heavy lifting compared to the Avastin but it's giving him 70% of the side effects so it seems like the best option would be to just do Avastin for now.  We could revisit that later if needed but after this month I don't think that will happen.  He's been off the Temodar for just over 2 weeks and his digestive system still hasn't fully recovered.  He's eating a little more but overall he's still really sensitive.  He's also on a much higher dose of potassium now but the dr said we can play with that a little bit since that can also make his stomach sensitive.  He said they have a tendency to over-correct potassium deficiencies so he doesn't mind if his level drops a bit if it makes him more comfortable but if he starts getting muscle spasms to just bump his potassium back up until we find that happy medium.  We're still waiting to hear back about his other test results to find out if we have to change the coumadin dose again. Never a dull moment!

Oh, we finally watched Jaws with Owen (thanks to the dad video library) and while he didn't make quite so many snarky comments during it he definitely wasn't all that spooked.  The kid is jaded, that's all there is too it.  Although he hasn't been to the ocean yet since then.   Just wait!  OOH I got his report card today.  I was on him so hard to keep his grades up until Jesse passed away and I kind of threw that out the window and just wanted to be sure he was ok and I could care less about grades but wouldn't you know it, he pulled a 3.7!  He got better grades this term than he did last term.  We're so proud of him.  I had so much fun with him tonight.  We made dinner together and laughed the whole time.  I made a noise when I laughed and he asked if I was laughing or going to throw up.  I said that laughing is how I respond to nausea.  He said I must want to throw up the whole time I'm with him, which of course made me laugh harder.  Then when we went back to explain to Dave why we were laughing obnoxiously Owen just stood there staring at me cutely because he's so proud of himself for being taller than me.  It's genetics, pal! 

He really is the light of my day. It's been an especially rough day.  I told Ricki I was overwhelmed and she asked for specifics so I started unloading on her via text while I was at the store.  She called because it was silly to have that long convo via text and I said I'd call her back when I got to the parking lot.  I hung up and sneezed and an older woman standing near me said, "bless you" so I thanked her.  She added, "I feel like we can use all the blessings we can get." Perfect timing.  Amen, Lady! Amen.  It kind of choked me up.  Sometimes people touch your life in ways they don't mean to.  I almost went back to hug her after I thought about it a minute but I didn't.

I also went to the cemetery to paid off half the pre-arrangement fees today and left a couple little dinosaurs for Jesse (he was such a dino guy) since it's all at the same place. I could have mailed in the payment but I wanted to use the disney visa so we get reward points.  Dave said early on if we have to pay for something awful like that we might as well get something out of it.  True enough.  I also had to call and leave a few messages for the long term disability folks to find out about an additional benefit they haven't gotten back to me about yet.  It's.... so frustrating.  She said she would call me back last thursday and I haven't heard a peep.  After the messages I left today if I don't hear back from her tomorrow I'm going to talk to her supervisor.  I'm not in the mood to just let this stuff slide.  She needs to do her job so that we can get on with things and not have unanswered questions.  I also called hospice and talked to the nurse manager (or whatever her position is) about how I don't feel like communication is up to par.  We were expecting our nurse today and when I finally called the office after not hearing anything all morning I found out she's coming tomorrow but no one told us about the schedule change.  There are a couple other things that are on my nerves about it and any one of the things wouldn't be a big deal but when you put them all together and look at the big picture with everything else we're dealing with it all adds up. I feel bad for breaking down on the phone with her but their job is to make things easier and right now it's not really happening.  I feel like such a jerk calling in to talk about the things that aren't working for us but I know it's what will make their services better for us and for other people.

What it boils down to, for me, is that while I'm taking care of everything I'm not taking care of myself as well as I should be.  I'm taking steps to try to remedy that but for right now I'm just overwhelmed.  Getting 4 hours of sleep last night probably didn't help that.  I wear my Stay Plucky bracelet every day and look at it constantly.  We still laugh at a lot of things and keep our chins as up as they can be but everything is starting to sink in a bit.  We're just going to keep laughing and crying and moving forward the best we can.  I'm glad Owen laughs just as much as we do and makes his own jokes about things and is generally as plucky as a guy can be.  He's pretty awesome and I'm a lucky mom.

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