Tuesday, May 29, 2012

The Cookie Dough Standoff

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. ;)

Tuesday, May 22, 2012

Always Reboot

Well last week went pretty well with a few hiccups.  My dentist appointment went well except that I have to get a couple fillings replaced.  It's better than having to get crowns which would be the next step if this doesn't take care of it.  Fingers crossed.  Owen's Ortho appt went well, at the next appt he's getting some brackets repositioned so they can fine tune his positioning.  YAY!  Ariana's test didn't go quite as planned but there's a lot more studying going on around here now and as for David... he got a lot of rest. 

Dave didn't actually get in the wheel chair at all this week because he's got so much edema.  The nurse got the dr to give him a diuretic and she thinks it's working but it's hard for us to tell because we see him every day.  She sees him twice a week and claims it looks better but it's basically his whole body is swollen.  I agree that his face isn't AS puffy and his hands aren't quite as bad but it's especially his legs and feet which makes us more wary about putting him in the chair since that makes it worse.  Of course tomorrow he has chemo again which also makes it worse.  This will be the 7th Avastin treatment.  We're not sure how much they will want to do but the dr will basically let him get treatment as long as he wants to take it.  At this point it's built up in his system so it makes him more tired and he gets more side effects.  Thankfully those side effects are minor in the grand scheme of things but they can potentially cause problems.  Our biggest concern with the edema is skin break down.  Since the skin is so taut it bruises easier, dents easier even with a crease in the sheet and is prone to break down easier.  Just a little added stress, no biggie ;)  The dr may increase the diuretic dose but that means we have to be more cautious about his potassium levels and electrolytes.  Banana's for David!

Ooh on the bright side he's been off the steroids for a couple weeks and that seems to be helping the skin problems.  The rashiness on his face is going away although it's not gone and the body rash seems to be going away as well.  YAY!  We're definitely clinging to every bit of positive that we can find.  It's been really hard on him to be bed ridden.  His neck is still hurting although not quite as bad as it was, that's a good sign too.  When he doesn't move his head for a while his neck stiffens up so after naps and in the morning is the worst time for him, especially the 5 am medicine wake-up.  It can be hard for him to fall back to sleep.  He's not taking extra morphine anymore though so that means it's getting better. 

So our (not) fun for the week is that the truck died again.  My dad helped me get it to the shop, the mechanic replaced the idle motor and said it worked fine.  We went to pick it up and it started right up and Ariana headed to school.  After school it wouldn't stay running again unless you gave it gas.  I picked up the mechanic and he drove it back to his shop (he's magic) by giving it gas as he went and after a couple blocks it was fine... frustrating.  Again he said to come pick it up and when we got there it wouldn't start for us... hahahahaha Ariana and I decided the truck must be sexist.  David mentioned that he read that a computer problem might cause the gas mix to be off and that could be part of the problem.  I asked the mechanic if he reset the computer, he said no because it showed no codes.  He said he would reset it if I wanted him to.   Yes please.  So he took off the battery cables, cleaned and reattached them then ran an idle reset routine and VOILA! Working truck!  We picked it up yesterday and it worked great, A said it ran better than before and the big test... it started this morning too!  YAY! Hopefully it stays running this time.  We may not know much about cars but we do know computers.  Always reboot!

This week Owen has a big presentation in reading class, he has to BE Alexandre Dumas and talk about his life (in the first person).  Ariana is taking french so she's helping Owen with his pronunciation of some key french words, it's so cute.  When he was practicing his speech he left his rubberbands on his braces which make it harder to understand him and he said something about the Duke d'Orleans and it came out more like Dork d'Orleans.  Hahahaha I had to interrupt him because I was cracking up.  Poor kid, can't even get through his practice run.  It's a good thing he loves me.  I took to calling him the Dork d'Orleans the rest of the night.  I'm glad he has our sense of humor.  We also discussed other french things... (from the movie better off dead)  “French bread, french fries, french dressing, and to drink…Peru.”  He added french kissing. I told him no french kissing and we were both cracking up.  Dumas was a womanizer so he was saying he could work into his speech by saying "I kiss my girlfriends like this..."  We were practically on the kitchen floor giggling.  Boy oh boy is he a teenager now or what?  Heaven help me.  He has always gone out of his way to make me laugh, not that it's difficult.  I love that about him.  The only person that makes me laugh more is David.

I spent this last weekend doing the bare minimum around the house and I read The Hunger Games series.  It made me remember how much I like to read but never take the time.  I'll have to dig into my giant stack.  Game of Thrones series, Mistborn, Girl with the Dragon Tattoo... I have to pace myself because I get sucked in and only do the things around the house that I HAVE to do.  Ah well, everyone needs an escape sometimes. 

Oh yeah! I found Dave's razor too!  It was lost in the abyss that is the garage but I found it.  Not that he's going to shave off his beard or anything but I thought it might make him feel better if he could trim it up.  Small victories and all that.

Sunday, May 13, 2012

Happy Mother's Day!

What a nice Mother's Day weekend!  Yesterday Ariana and Owen made breakfast and lunch and held down the fort so I could go get a haircut.  Ariana also mentioned they were handling dinner so not to worry about that.  A whole day of no cooking, YAY!  They also cleaned the house, boy did they clean it!  The kitchen has a counter again. It's a mother's day miracle!  *snicker*  She hauled Owen off to the park and they wandered around taking pictures.  Around 5:30 they told us they were leaving, I asked if they were getting stuff for dinner and she said yeah... and that they'd text us.  About 15 minutes later she texted to say she was taking Owen to a movie and they ordered dinner to be delivered around 6 and happy date night!  Awww, cute.  Thanks kids! What a thoughtful thing to do.  It was much appreciated.

Dave however spent "date night" napping.  His neck is still really bothering him.  I've been trying to massage it as often as I can but it's not really helping much.  It reminds us of when he was first having back pain (which we later discovered to be a tumor) but it hurt so much even after being massaged that he was sleeping on the floor to try to get some relief.  I'm hoping this neck thing is just sore muscles but it's possible that it's from the fluid building up.   He's also very puffy still.  His skin is so tight, it's like we could poke him with a pin and he'd deflate... but sadly it's not quite that easy. 

He's been doing relatively well, he got up in the chair today and I think that helps his neck a little but kind of puts stress on the rest of his body so it's kind of a toss up.  He gets much more swollen in the chair and doesn't actually normalize when he's laying down so... we're trying to figure out which of his ailments we can do something about and which we just have to try to make him comfortable with.  It's a balancing act I suppose. 

Today I discovered that not only is Owen taller than me, but he's taller than me when he's barefoot and I have shoes on!  GAH!  It's like he's growing a half an inch a month or something.  He's also super hungry all the time.  I didn't know that started at 13 but apparently it does.  I suspect he'll end up having a growth spurt soon.  I remember my brother growing so fast his legs hurt, I'm hoping that doesn't happen, we don't need both boys being uncomfortable! I guess I do have lots of pain meds up in here though... (I'm totally kidding) Actually if they're both hurting I'm gonna take the pain meds. ;) HA!

Today was like... stupid hot.  Especially in our un-airconditioned house.  Luckily none of our allergies have been that bad, knock on wood, so we have all the windows open with a fan trying to get some movement going.  I'm pretty sure it's cooler outside at this point.  I got a couple hanging baskets for mother's day and when I went to put them up I realized I have some wasps making a nest under the eave.  YICK!  I'm going to go spray them soon since it's dark out and I can get all of them at once while they're sleeping... not a very happy mother's day for the wasp family.  hehe

 So this week I have a dentist appointment (yay), Owen has an orthodontist appointment, Ariana has a midterm, Dave has nurses that come about 5x a week for different things and we'll probably ask the massage therapist to come over again.  Thursday is a Peacemakers concert we're thinking of going to.  Well I'm taking Ariana (all ages show) and we're hoping that Dave will be able to go but we're waiting to hear back from the oncologist about how low he thinks Dave's immune system is and if it's safe for him to go.  If he is in the wheel chair and rocks a mask probably no one will bug him, right?!  Oh yeah and I have a PTO meeting on thursday... hmm... conflict... I'll figure it out. It's going to be a busy week!  Let's hope the temps don't soar too high and everyone can have a successful week!

Happy Mother's Day to all the Mommies and Mommies-To-Be!

Wednesday, May 9, 2012

What A Pain In The Neck

Yay for a clean yard!  I mentioned that I hired someone to clean the back yard.  They came on Monday and wow!  The company is Atlas Cleaning Services and I swear... if you ever need anything done, yard or inside, call these guys.  They did an excellent job, above and beyond really.  I can't say enough good things about them. They are the ones that have been cleaning our house and they took out all our blackberry bushes, got the ivy under control, hauled off a pile of scrap wood I wasn't expecting them to touch and cleaned out the raised beds, including the overgrown mint!  I'm so giddy about it!

Owen is having a better week than last week although on monday he got a little overheated at lunch and ended up in the nurses office again with a tiny little fever from being too warm and dehydrated.  This is kind of a common thing for him.  When he was in scouts it happened quite a lot so he needs to learn to take care of himself when the weather gets warmer. 

David is doing ok this week.  He had chemo today and the dr left him on the same dose of blood thinner as he thinks it's pretty close to where he wants it.  Dr also gave him another week's worth of antibiotic (yuck) just to make sure he doesn't have any kind of infection going on.  We're ok with that, D doesn't seem to have any reaction to it and we'd rather he be as healthy as possible.  He got the steri-strips off on his chest where they had to poke him to put the central line in 2 weeks ago.  One hole is healed completely and the other... it's healed but still kind of looks like a little puncture wound.  We'll have to watch that to make sure it heals up without incident.  His chief complaint this week is the pain in his neck (this time it's not me or Owen, HA!) Hospice sent over a massage therapist on tuesday and she said she'll check in and maybe come back on friday if he needs it.  She seems to think it's muscular and advil does seem to help it a bit so it could just be stiffness.  Poor guy, he's really uncomfortable and it's hard for him to even move his head sometimes.  He told the nurse at the beginning of the appointment that his pain was at a 5 and it just seemed to get worse.  He was only in the chair for about 4 hours today and wanted to be back in bed as soon as we got home.  I'm hoping to find something that helps him soon.

We finally got both our wills done so that's off my shoulders as well, we're whittling away at the good old to-do list and we picked a color to paint the wall opposite David's bed.  I thought he needed something new and shiny to look at.  Peacock blue! Hopefully when it's more than just a patch on the wall it doesn't overwhelm him.  Oooh, speaking of something shiny and new to look at we finally got a tracking number for the ipad we ordered over a month ago.  Actually that company was having problems getting inventory so I cancelled the order and just got it through Apple.  I should have done that a month ago!  We're amused watching the tracking because it got sent from China (big shock) and was scanned in on dates that are the day after it was here!  It's practically getting delivered before it even got sent! It left Chengdu, China May 9, 2012 7:10 AM and after a few stops arrived in Portland on May 9, 2012 9:32 PM.   While that looks like about 13 hours it's actually about 28 hours.  I'm so easily amused!

I'm doing ok, getting a little better sleep which is always good but I dream a lot so it doesn't feel all that restful.  We try to take a nap in the afternoon too which is nice.  I did something to my foot on monday, or rather I noticed it on monday.  I don't know what's going on with it but my right foot is achy.  It aches even when I'm not putting any pressure on it and I can't really pinpoint where it hurts.  I'm hoping this goes away on it's own and it's not a stress fracture or anything stupid like that.

Tonight we have a frost advisory.  FROST ADVISORY?!  But it's supposed to be up to 80 this weekend.  Crazy weather.  Last year we didn't get an 80 degree day until well into June so I guess this is good but how am I supposed to plant tomatoes if we have a frost advisory?!  I can't wait to get a garden planted!

Saturday, May 5, 2012

Beware of Mother Hen

Sorry I haven't written all week.  I feel like we've been extra busy although we probably haven't been more busy than normal.

We had nurses out to the house every day this week which is a lot more than normal.  They were checking his blood to keep tabs on his coumadin levels and the dr decided to increase his dose since his body doesn't seem to react much to it, he's on his third type of antibiotic for a persistent bladder infection which is finally getting better,  he is on chemo this week which makes him more tired so he hasn't been out of bed at all since last sunday. He's almost off the steroids, YAY!  I borrowed a carpet cleaner and spent a day deep cleaning the area rugs and our bedroom rug which was much dirtier than I thought.  Whew!  Maybe we are a little busy.

Owen came home from school early twice this week.  One day he had a bad stomach ache and the next day he got in a little tussle at school.  It wasn't much of a tussle, a kid had been on his nerves for a while and Owen finally pushed back, literally.  He told me what happened and wasn't proud of himself but he just had enough of this kid and stood up for himself.  That part we're proud of him for although we wish there was a better way to do that, sometimes I think maybe there's not.  Anyway he excused himself from class to collect himself and when he blew his nose he got a bloody nose.  That's not all that uncommon, I got a lot when I was a kid too, so he went to the nurse to get cleaned up.  That's when he told them about what happened in choir.  Apparently two girls from class came to the office to say that they saw the whole thing and that kid had been on owen's case lately and he doesn't deserve that.  They were protective, that's so incredibly sweet.  When the nurse called me I talked to Owen and decided that I was just going to come get him since he was pretty stressed, which is likely what caused the upset stomach the day before.  We just needed a little time to regroup.  I feel kind of bad about it like if you have a problem your mommy will take you out of school and let you hide from it but it's not really like that.  Or is it? ;)  My mother hen instinct is pretty high right now and if that's what he needed then that's fine.  We got his homework from his afternoon teacher and went home.  I talked to the vice principal and she assured me it's getting taken care of.  They really watch out for him there.  I know they watch out for all the kids but I've always felt they take good care of Owen, especially since Dave has been sick.  I count my blessings all the time that I got so involved this year and that they are such a fantastic community.  I think taking him home was a good choice and he spent some time talking with Dave and I about what happened and why and about our stress levels and how to deal with it and stuff like that.  It was at least a productive afternoon playing hookie.

Speaking of being a mother hen...  I haven't said much about it but my new little chick (Ariana) has an ex that is a little bit of a... well... I'll just be nice and say he's unwelcome here.  He showed up today out of the blue and caught her off guard because she happened to be walking outside when he pulled up.  I noticed after she'd been outside for a minute and just as I was slipping some shoes on to go out and "invite him to fellowship elsewhere" I saw her motion for him to leave and as I was about to open the door she came in.  Good girl! She's so incredibly brave and strong for sticking to her guns.  We're proud of her.  But seriously?  Who shows up like that?  He's lucky she was going outside because if he had come to the door I would have been the one to answer and I'm sure that's not what he wanted.  I don't think he or anyone he knows reads this but I wanted to make it clear to our friends and family that have been concerned about her/us that if he makes a nuisance of himself I'm more than happy to initiate a restraining order and he's absolutely not welcome here.  Period. RAWR  Sheesh! 

Oh, I ended up hiring the company that has been doing the housekeeping to do the backyard.  Well actually they're just cleaning up, not landscaping or anything.  Serious invasion of the blackberries going on back there.  They're going to come out on monday and spend the whole day, 2 people, clearing out the edge of the yard of blackberries, weeding the raised beds, trimming some butterfly bushes and whacking out some ivy.  They cut me a sweet deal.  There will still be a lot to do but I'm hoping to corral friends and family into helping do some of that other work at some point.  Yardwork party anyone? ;)  I'll just be happy to get those blackberries at least whacked back to the point where we can spray them with crossbow or something.  Also it will be nice to be able to plant something besides mint in the raised bed.  My Nana warned me that it would take over and boy was she right! 

I haven't been sleeping all that well. I get most of my sleep in 2-3 hour naps here and there.  I've always been a night owl but it's been worse lately.  I have so much to do and just no energy to do it.  Not even big things, just things.  I need to get some exercise, not sure what or when or how but I have to do something.  I know I'd have more energy although at first I'm sure I'd have less.  Heh.  I would love to start back up at boot camp but I don't think I'm quite ready for that yet, plus I'd have to be careful because after starting that I can barely walk for a couple of days and that won't do anyone around here any good! 

I've been talking to a friend of mine that I met years ago playing World of Warcraft.  He has been in a wheel chair for years after a diving accident and gets what we're going through right now.  It's been so helpful talking to him, it's really given us a little hope and lifted our spirits.  Next month he's trying out for the paralympics swim team!  That's so awesome!  I don't think Dave is quite at that point where he's wanting to be an athlete but at least it gives us hope that if his tumor/swelling is held off for a while he can still have as much of a life as we put effort into.  It took my friend a couple of years to realize that and we may not have a couple of years to make that mental shift but maybe that will be a motivator to shift sooner.  Thanks, Yianni! <3

Oh yeah, we tried to watch Jaws with Owen but apparently you can't stream it online anywhere!  Netflix has failed us! We might have to actually buy it.  Ew!  ;)