Well hmm, this last week seems to have escaped me. Let's see where I left off...
Owen's presentation was a SMASH! He wore a fake mustache that started falling off in pieces during his speech. He stayed in character and finished his presentation. He said the whole class was laughing and he just kept right on. That's my boy! He said he thinks it's funnier when the person being funny can be serious about it. Going for the straight man approach I guess. He got an A+ on his presentation! That was on a chemo day so we weren't home when he got home so Ariana took him out to ice cream. What a nice surrogate big sister! Owen then got to spend a couple of days with my dad and stepmom and little brother. They went to the aquarium in Newport to see a new exhibit where you stick your hand in a touch pool and little cleaner shrimp nibble at your fingers! Ew and awesome at the same time! Organic manicure.
Ariana went camping for the long weekend and before she left she got a tub of cookie dough from papa murphy's and put a "hands off" note on it. Owen came home sunday and saw the note and decided to retaliate.
Hahahahahahahaa. It cracked me up when I saw it but when Ariana got home on monday night and saw that she freaked out about how awesome it was then spent the next hour just randomly giggling when she'd think about it. They're so funny together.
Sunday after Owen got home I went to my grandma's for dinner. It was halibut and clams so I didn't feel bad leaving the boys at home, they aren't keen on fish/seafood anyway. My aunt and uncle from washington were in town so they threw together a little family dinner. It was nice to get out for a couple of hours to get some time with the rest of my family and the boys spent a little time together at home.
David is doing ok. His neck is same old same old. There was one day when he thought it felt better so he figured maybe the edema had gone down a bit and was making it better but the next day the soreness was back! Fooey! The swelling in his legs has gone down some with the larger dose of diuretic but the bruising on his feet/shins/calves is still there, I imagine it will take a while for that to go away. I don't even know if I'd call it bruising so much as redness. It's fading a little bit but most is still there. Last night I picked him up in the sling to change his sheets and he was only in the sling for maybe 5 minutes tops and his feet already started swelling again. UGH! Oh yeah and since his dose of diuretic is higher he gets a potassium supplement. The pharmacist said "make sure he sits up for 30 minutes after taking it and make sure he swallows it all the way because if it dissolves in his throat it can eat a hole through his esophagus. Yummy...
I finally talked to my neuro-oncologist friend about David's scans. He said via text (yay for text messages), "There is definite ascension into the cervical spine with expansion of the spinal cord which usually indicates progression." and "Unfortunately from the MRI and reading the report referencing the previous MRI, it looks like it has progressed" That's much more straight forward than David's dr. He said the Avastin and/or the Temodar could cause that swelling but that he thinks the current regimen sounds very good and he was hoping that he would be on Avastin. It's not really a surprise that it's progressed and that we finally have a dr that will come out and SAY that.
Yesterday I was doing something next do Dave's bed and he tugged on my shirt and pulled me down so I'd give him a hug. It was cute and was really the first time he's been assertive about that and it made me think that I take his hugs for granted because any day he could wake up and not be able to hug us. /sniff It makes me think more about how most people don't get to see that funny, playful side of him. The other day Ariana was in the car with me when I was on the phone with Dave. It was on the overhead bluetooth so she could hear him and when we got off the phone she commented that it's cute how he talks to me and she's never seen that side of him. He's cute! There, I outed him. He'll definitely roll his eyes at me for that one.
There have been a fair amount of reality checks lately. Things that I don't like to think about, like the things I'll have to do when he's not here, like we won't outnumber Owen anymore (don't get too excited, Owen! I can filibuster my way through any standoff), I won't be able to use "I'll have to talk to my husband" as an excuse to salespeople... the list goes on and on. I don't look for these things but they have been kind of slapping me in the face more regularly lately.
His dexterity is still mostly ok but he's been a little more clumsy and his arms are getting twitchier. I always think he's cold but really it's that his arms are twitching and it occasionally makes him look like he's shivering. I'm sure I drive him crazy asking him if he's cold. He drops things more often although maybe that's because he wants to do everything for himself. I don't blame him, but it just makes more work for me sometimes cleaning up after him. It's not a huge deal but I also don't think it makes him feel great about his situation when he's dropping his water bottle that pops the lid off and water goes everywhere... just sayin.
I anticipate that this next week will be a little rough. He's got Temodar from Friday - Tuesday then Wednesday he goes in for Avastin. Talk about a one-two punch! I'm sure it will be ok, swelling seems to be his only side effect so far but now that it's building up in his system we're on high alert for other problems. The Temodar mostly just makes him tired, the Avastin seems to make him puffy so this week he gets the best of both worlds. I'll just do my best to keep him comfortable. I hope he can get through this week with minimal problems.
Ok, just a moment to rant. What part of "no soliciting" do people not understand? The last one that came to my door tried to give me some laminated thing to look at (no idea what it was) and I said, "I have a no soliciting sign" He said "I'm not selling anything" as he's sticking this sheet in my face. I just looked at him and waved and say "bye bye" and shut the door. The window was open and as he was walking away I heard him say "what a b----" Seriously, dude? I wasn't really offended, irritated yes, but not offended. It just made me think that A. People don't know that soliciting doesn't just mean selling. and B. You never know what someone has going on in their lives so judging them based off a 10 second interaction is really.... well... judgmental. It's something I think about all the time now. Not just that people don't know what we're going through but that I don't know what they're going through and having a little extra tolerance sometimes goes a really long way. Now that I've typed all that I feel like maybe I've mentioned this about the sign before. This was a new gem of a door knocker but the moral stays the same. I repeat things, it's what I do.
So like... I still haven't painted the bedroom wall, there's still a big blue test stripe on the wall, it's super classy. I have to clean off a bookshelf so I can move it to paint behind it and I've just had too many other things I want/need to do. Sometimes that includes just sitting there doing nothing! Which reminds me, I didn't get the COBRA application until kind of late in the month (like last wednesday) and it was a couple hundred a month more than I was originally told it was going to be so I was going to call for clarification but then I got distracted (ooh look, shiny!) and forgot so I didn't actually get it turned in until today. That's bad, right? 2 days left in the month? Serious bad juju on my part. I'm going to call tomorrow to find out if that's going to be a problem, not that there's anything I can do about it if it IS a problem. Honestly I'm not that stressed about it. One way or another we'll figure it out. I'm getting the hang of this not worrying about things I have no control over thing. Or at least that's what I keep telling myself. ;)