Thursday, July 26, 2012

C3P0's Fruit Loops?

I FINALLY PAINTED!  Peacock Blue, we love it!  I know you're all really interested...  I actually only painted one wall which is all I was going to do, but I also moved a couple things in our room around which gives us a tiny bit more room and less places to put clutter (I moved a bookshelf out).  We also got an air purifier and a new vacuum to try to help cut down on allergens/irritants. They are grade 2 medical devices so I'm hoping *fingers crossed* that we can write them off as medical expenses but I suppose I'll have to talk to a tax accountant about that.  So far so good.  I've noticed that Dave's sleep apnea isn't as bad and my allergy induced asthma symptoms haven't been as bad.  All pluses!  I hated spending the money on it but I think it was a good long term investment.

David is doing fairly well.  He's taking a lot more advil to try to get rid of the neck pain.  If it's muscular aches that should help if it's not muscular then the morphine would be better.  It's kind of a guessing game so we're just guess and checking until we figure it out.  The massage nurse suggested heat but um... it's been 80+ and the last thing he wants is MORE heat. 

Mostly it's been a low key week.  Except for my whirlwind project of painting and now there are boxes of books everywhere (fantastic!) because I haven't put them back on the shelf yet, dust, yay. OH and the toilet tank in Owen's bathroom has started leaking like the one in our bathroom did when Dave was in the hospital.  My dad is helping us replace this one too but it's just another pain in the neck thing I wish we didn't have to deal with.  This year has been full of them but I guess on the bright side... new toilet.  yay?  I'm not sure why that feels low key to me even though things are a little hectic.  Maybe because Dave is doing well.

Not a lot to report this week on the medical front which I'm actually really thankful for.  No noticeable progression of Dave's paralysis.  Owen has been great, I'm hanging in here and getting a few things done.... oh, yesterday I realized that I haven't taken my thyroid medicine (I have an underactive thyroid) for... well... so long that I don't remember. Months.  Not that I just don't bother taking it but I honestly just FORGOT that I was supposed to.  I guess my priorities have been somewhere else.  No wonder I've been feeling kind of run down and have been gaining weight and such.  Here I thought I was just eating poorly (ok, that too) I keep talking about going back to boot camp and the more I talk about it the more serious I get about it.  I sent my trainer a message, that's the first step, right?  But might have to just go in and talk to him.  I figure if I tell more people about it I will have to stop making excuses. ;)  It's hard to think about doing that kind of thing when you have no energy... even though I know I'd have more energy if I were exercising.  Funny how that works, right?  I'd probably sleep better too.  I fell asleep at 4 am, woke up at 6:30 to turn Dave and had a hard time getting back to sleep them up again at 10.  This is getting pretty typical. 

Now for your weekly installment of David's Journal


My favorite cereals are C3P0's Fruit Loops and Sugar Smacks.  I don't like all cereals because they don't taste good like cheerios and kicks and all sorts of yucky things like that because they taste like dry cat food and saw dust and when you put milk on them they go soggy and limp like a wet noodle and yuck. They really taste sicko! That's why I never eat them! 

Who doesn't have an aversion to soggy cereals.  I'm unclear what cat food and saw dust taste like but apparently it's like bland cereal.  hehe It's funny that those are the ones he lists as his favorites but he has never let Owen have those sugary cereals.  It was a different time I suppose!

Wednesday, July 18, 2012

A Week of a Different Color

This week is much better than last week!  I'm glad these episodes of more than normal stress are short lived. 

Owen went to stay last night at the Wolfe Compound (lucky them!) so Dave and I had a quiet evening of Storage Wars and Deadliest Catch watching *snicker*  Today Dave had chemo.  Our hospice bath aid is AWESOME and plans her schedule around his appointments so she can come bathe him and help me get him dressed before we go.  Today was an early appointment so she came over at 8:30.  I set my alarm for 8 but yeah... the snooze button is awesome so she woke me up.  OOPS!  I'm not complaining, I just felt bad that I answered the door in my pajamas.  We're thankful that she is so easy going and so willing to accommodate us. We really like her.

So Dave went in for his appointment and they drew blood to run labs then we saw the doctor. We brought up our concerns about chemo that I touched on last week and this doctor (not our normal doctor) gave us a few options.  He suggested that Dave could try another kind of chemo since he's not doing Temodar anymore.  Yeah... I don't think that's on the agenda.  We suspect he's just making sure he talks about ALL options.  So we told him our primary concern, that we don't want to prolong things after he loses use of his arms.  We barely got out the sentence when the dr said, "It won't"  As he explained it the Avastin is only really in your system for a week or two (google says 11-50 days, nice range!) so once the decline has hit that critical of a point the Avastin isn't going to play a role in the last stage and we can expect things to move quickly.  Is that wrong that hearing that the end stage will be quick is a giant relief to us?  I mean yes, it's scary, but knowing what to expect makes us much more equipped to cope.  We both agree that David will continue to do chemo until he declines so much that it's not worth it, he can't tolerate the trip anymore or he has some other side effect from it besides being tired.  Sheesh, with how much his body is going through it's no wonder he's tired.  I sometimes think about how flippantly some people say, "I'll sleep when I'm dead".  I admit the thought has crossed my mind when I want to wake him up to tell him something but really I want to let him sleep now as much as he wants so that when he's awake he's actually alert.  Although when I get excited about stupid things him being asleep has never stopped me before.  LOL  I should take advantage of it now while he's still here to tell my stupid things to! Poor guy would never sleep!  

OH! I forgot to mention that when he got blood drawn it was hard for the lab guy to draw it and by the time he got enough and then got it in the vials it had started clotting (even with his blood thinners? odd) so when he got out of his dr visit someone chased us down on the way to the the chemo room to tell us they had to draw new labs!  ACK!  The second time worked great but it definitely stressed him out a little more than normal. 

The weather was nice (for him) not sunny, low 70s, just rained so it smelled awesome.  It's the first time he's gotten to sit outside when the weather was comfortable for him.  We just sat and enjoyed being outside while we waited for our ride. I got him home and he stayed up long enough to help me mix up a batch of carne asada seasoning that we've been making for years and have yet to write down the recipe for, we just save a little from the last batch and taste test until it's close, or as Dave says, "Close enough for government work" then he went back to bed and napped for a while.  I noticed that a couple of his toes have little sores like ingrown nails or something.  This happened once before because of the edema.  Nurse Marla to the rescue!  I'll keep an eye on them to make sure they don't get infected.  If it's not one thing it's another!

I feel very spoiled this week. Last friday I got to visit Betsy, my bff of 25 years (holy cow, that shows my age because we were in middle school... wait, don't do the math!) Sunday my mom and nana came over for a "picnic", monday Owen cleaned his room with no complaints (because I bribed him with going to a friend's house) because on tuesday the housekeepers came for I think the last time for reals (thanks to some very amazing friends, I love you guys! Really, words aren't enough, I'm gonna hug every one of you some day!) Also yesterday Ariana was in town for a little while so she stopped by to say hi.  We miss her face plus she helps me more than she knows.  I appreciate her and her timing was perfect.  Maybe something prompted her to visit us. ;) Today our bath aide started her work early to come help us out, we got comforting news from the doctor and tonight Tim brought dinner when he brought Owen back.  He also brought their kids so we got a visit and dinner and entertained by goofy teens and Rose got some time with a mostly quiet house, so really that was a gift for all of us. Hahaha  It was good to see Tim. Tomorrow my dad and holly are coming over for a visit and dinner.  It's a full week for sure but we welcome that, especially after how emotional and in our cave last week was.

Journal time!

"Strange Things Happen When

Strange things happen when we get a big package in the mail and it says do not open until christmas.  Everyone starts guessing what it is.  People sneek up and shake it or they go and feel it.

Strange things happen when I start typing in a program I know nothing about on the computer. Everyone wants to know what I'm typing in I just say, "I don't know" and we run it and it erases a disk. WHOOPS!"

The christmas gift part of that story reminds me that David has serious present issues.  No shaking or guessing or touching whatever is wrapped up, strictly hands off.  He says his dad could pick up any gift and shake it and know what was inside and it drove him crazy.  I guess when you're a grown up you get to make your own rules and his rule is NO GUESSING! 
As for the computer comments, he wrote so much about computers even in the mid-80s, it's no wonder he ended up in the IT field. I think eventually he learned what the programs do before he typed in them. ;) 

Thursday, July 12, 2012

Favorite Stories

Well we made it through the 4th with all our fingers intact!  Dave got up in the chair to watch the kids (neighbor kids in the cul-de-sac had their own spoils) light things off and even though we didn't go to see any big displays we had plenty of neighbors with the big booming overhead less than legal stuff going on. It was a short and sweet display.  We went back inside, I gave Dave a haircut and got him back to bed.

The next day he had chemo and everything went pretty well.  Owen came with us because we thought it might be fun to go to the hospital cafeteria and eat at a "restaurant" (it's actually pretty nice) together but really the whole thing just bored him and he probably won't want to go with us again.  Hahaha.  Poor kid.  That's part of what being a kid is all about, right?  Getting dragged around by your parents to things that don't interest you? 

We've noticed that Dave's feet haven't been as swollen the last couple of days.  I can actually see his ankles again!  *snicker* His nurse was on vacation and just saw him after a week and a half away and noticed it right away.  We suspect that not doing the Temodar anymore (it's been about 6 weeks since his last treatment) is helping the swelling.  We knew it was one of the possible side effects but it's nice to actually see a result.

We're having a bit of an emotional week.  We've started talking about how long he'll be on the Avastin.  Not that we're chomping at the bit to make a decision but we're well aware that his arms are gradually getting worse and we're trying to make an educated decision about how much longer the chemo will benefit him.  As morbid as it may seem to think about this stuff we want to find that balance between giving him comfort and prolonging his agony.  We'd rather have a plan of action than let it sneak up on him and have to make a snap decision.  We're planners.

We seem to do pretty well as long as we have a plan and something to work towards.  Dave says that he has a finish line, not that he's racing for it or anything but he knows that there's an end point to this suffering for him.  For us, his passing isn't our end because we will continue on but it's definitely the start of something new for us.  It is a strange sort of limbo because we make plans but nothing firm necessarily because we don't have a time limit and that's ok.  We have to be adaptable but knowing what direction we're headed and being on the same page has been helpful.

In my plight to make sure Owen doesn't spend the entire summer playing on the computer (ya right, good luck!) I asked him to pick some books he'd like to read for pleasure.  He does enjoy reading but has had to do an awful lot for school that he wouldn't have necessarily chosen himself.  He picked up the The Chronicles of Prydain by Lloyd Alexander.  We call it the Black Cauldron series because it's the books the Disney movie of the same name was based on.  I think he's only read the first of five but he just started a couple days ago.  I'm glad to see him back in the world of books and away from the computer.  Now if only I could get him to read outside... ;)

This month we have a free preview of the Encore channel and they're showing just about every old James Bond movie without commercials.  David watched a lot of them growing up but there are a few he hasn't ever seen and I haven't actually seen any of them except a couple of the newer ones.  Normally I come in somewhere in the middle and he tells me what's going on and all the trivia about the song and the bond girl and all that because he has to read about the movie while it's on.   I'm trying to clean off the bookshelf so I can finally get around to painting but so far I get about a shelf done and have to stop because the dust gets to my allergies and I don't want to stir up too much and aggravate Dave's allergies.  We're all staying busy.

A journal entry from 1984

"Favorite Stories
My favorite stories are the choose your own adventure stories or horror stories or fantasy stories. My favorite story was a big book that was a fantasy story with about 300 pages.  It was about a little girl that was a sorcerist and got lost in the jungles of Xanth.  Her mother goes after her with all her friends.  But the girl gets caught by an evil witch.  They finally rescue her but find out their country is in danger of being destroyed by little creatures that eat their way through everything. They gather together and save their country."

David adds that he was talking about the Xanth series by Piers Anthony but since he wrote so many books he doesn't remember which one he was specifically talking about.  When I asked him about the horror stories he has no idea what he was talking about.  He figures he either read something he thought was scary and called it horror or maybe he wanted to be scared so he said that but didn't really know what horror meant.  I swear it's like Owen could have written these, chip off the old block.  He's so into "horror" right now even though he's never actually read or seen anything we'd consider horror necessarily.  Boys! 

HA! That reminds me.  When Owen was little we used to sarcastically say, "Oh the horror" when he'd freak out about something that wasn't all that big of a deal.  When he finally picked up on it he started saying it too, sarcastically, but with his pronunciation it came out more like, "Oh the whore!"   (which of course he had no idea what it meant) HAHAHAHA not exactly the same thing but it became a family meme and Dave and I still say it occasionally.   He also called my hope chest a "wish crate" and when the Woody doll (from toy story) would say "somebody poisoned the water hole!" he'd announce "SOMEBODY'S TOYS IN THE WATER HOLE!"  That one still makes me laugh.  To a kid your toys in the water hole is probably just about as upsetting as poison.  Ah innocence.  I'm sure there are more but those are my favorites that come to mind.

Wednesday, July 4, 2012

Happy Independence Day!

 Tomorrow (well, today because it's technically after midnight) is the 4th of July.  We don't normally do much on the 4th, sometimes a BBQ at my Dad's house but we haven't gone to see fireworks in years.  We're kind of thankful for that because it's not like we're missing some huge tradition we had.  Owen and I are going to pick up some fireworks and light them off in the cul-de-sac.  Owen is thrilled because Dave officially passed the torch to him this year to be the one to light them off.  Last year he got a taste of it (with supervision of course) but now he's 13 and can handle it... still with supervision but we trust him a lot more to be responsible.  David said he thought he could get up in the chair and go outside to watch the fireworks.  He doesn't want to stay up too long because he has chemo the next day which means he'll be in the chair two days in a row... again.  He only gets in the chair once every couple of weeks but once a month it seems like he's in it two days in a row for some reason.  

Since it's the 3rd (4th) this would be right in the middle of when he'd be taking the Temodar.  He's glad to not be sick like he was a month ago. That was awful, I'm thankful for that too! As for his other meds the addition of the continuous morphine has really been helpful.  He is still uncomfortable a little bit in the neck and shoulder area but not nearly as bad as it was and he's sleeping a lot better at night with not having to wake him up to take meds at 5 am.  He still has to be moved in the middle of the night but if I'm just turning him he has to be less awake than he does if he has to swallow something that tastes nasty and then drink water with it.  It's less maintenance and he likes that. (So do I)  Of course tonight he's getting a migraine and I can't find the migraine meds.  He hasn't had to take them for months and I have moved things around so many times since then I have no idea where they could have gone.  Hopefully he can sleep it off and be alright.

Owen has been SOOOO super awesome lately. So helpful and fun.  I hope this trend continues! I took him to get his braces adjusted today.  They repositioned 5 of the brackets on the bottom teeth and put in a lighter wire.  I have no idea what that does but I guess it's supposed to not have as much pull or something.  He also gets to go without rubber bands for the next 5 weeks.  Lucky dog. His teeth have moved so fast and his teeth were only sore when he first got them on.  He must have a high pain tolerance. 

I got my hair did yesterday! I've always been such a wuss about color but I splurged and just went for it.  My girl did a weave (the color technique not the extensions) and used a crimson red, it's so dark red that it's almost fuschia-y/purple.  I LOVE IT!  Too bad reds fade so quickly. I washed it today then noticed the bottom of the tub is pink and then when I was drying it my hands turned all pink.  DUDE!  I don't even have to do my nails because they're pink now! (I kid... kind of) I haven't taken a picture of my hair yet.  It's hard to see the color inside and the sun has yet to come out since I had it done.  Boo... Ah, summer in oregon... 60s and overcast.  LOL

David wrote this entry into his journal just before Thanksgiving in 1985.  It's about thanksgiving but given the content we thought it was mighty patriotic and fit with the Independence Day theme.

"I'm Grateful For
I'm grateful for turkeys and gravy with cranberry sauce and dressing and nice, thin, melt in your mouth slices of tender, juicy,  turkey, rolls with jam, honey and butter.  I'm grateful for clothes, clean air (which I don't have) cool summers, nice hiking up canyons, good ski resorts.  I'm grateful for a warm house. I'm grateful for the right to vote. I'm grateful for being able to go to school. I'm grateful for being able to choose which religion to join. I'm grateful for long strait freeways. I'm grateful for cars. I'm grateful for ways of fast transportation and I'm grateful for living in a free country."

(I'd like to note that he doesn't even really like cranberry sauce, but it's cute that he was thankful for it.  Also a lot of his entries have to do with food.  Those food details are the ones that remind me most of Owen.  )

In light (get it? light?) of the holiday I wanted to share this happy family memory. This is a video of Jesse from 2010 at a 4th of July BBQ.  He wasn't pleased that we were starting to light off fireworks before it actually got dark and he told me his solution.  It cracked me up so I grabbed the camera and asked him to explain it again.  I smile every time I see it.