August is more than halfway over and I haven't even posted yet! I'm slacking apparently. It's not like I have anything else to do. ;) Actually I've been wanting to write but I haven't been able to find time to sit down and put down my thoughts. I'm a little (more) scatterbrained (than usual) lately. Oh and also we watched pretty much every minute of the Olympics that NBC had to offer... even if a lot of it was fast-forwarded through. We determined that Volleyball and Waterpolo are way more amusing when you speed through them. We'd also like to note that trampoline and rhythmic gymnastics are Olympic sports? Hruhwhat? Why isn't Golf? or Cheerleading? Although trampoline was super super fun in fast-motion. Also not that we want to watch golf, just sayin.
We're doing ok, status quo I suppose. Owen is off on a whirlwind trip to the coast with my mom's side of the family. I left Uncle Jaeger strict instructions to be his go-to guy although I know everyone will keep an eye on him. He's tall(er than me) now and is wearing a touristy grey plaid hat, he's hard to miss. It's the first time he's been away from us for a whole long weekend all summer, I miss him already and I think he's probably still at Nana's house waiting for the wagon train to hit the trail. I hope he has fun, I'm glad he gets this chance to get out of the house a little before school starts on the 4th. 8th grade. Yikes.
Dave is doing as well as can be expected. The last time (2 weeks ago) he went in for chemo we followed up with Dr Sharman about when to stop treatment. He mentioned a couple of things the other dr didn't bring up. He said once he stops the Avastin they tend to see quick growth of the tumor, quicker than if he hadn't taken it. He called it a rebound of the tumor but it sounds kind of like a flood gate has been holding the tumor back and once the avastin is out of his system the flood gates open and the tumor grows quickly. That might sound scary but to David it's a blessing since he's going to take that medicine until he isn't allowed to take it anymore because his body is too weak. At that point he wants everything to go quickly. The dr also said at that point he likely won't be able to use his arms anymore and if he doesn't actually WANT to eat he doesn't have to. Not that it will be starving himself because his body won't need as much nutrition, that also relieved Dave because we're concerned about him choking and he doesn't want to have to be fed and those kinds of things. It sounds like those are all negatives but he left the office somewhat giddy. As cheerful as I've seen him all year really.
This last appointment (this week) his platelets are a little lower than they'd like them to be. That can be caused by a few of the medications he's taking but they aren't really things we think he can go off of, including the Avastin. So far they're letting him stay on Avastin, we'll see how long that lasts. The platelet range they list as "normal" for this lab is 130-400. In the last few visits his have been 82, 134, 77, 59 (hut, hut, hike!) we're not sure how low they are comfortable with that being as long as he doesn't really have other symptoms like random bleeding, which is a concern. There isn't much we can do to raise that level. His white blood count is still pretty good and in the normal range so they aren't worried too much.
Next time he goes in he's also going to talk to the geneticist to start the process to find out if he actually has the Lynch gene that his family carries. We started thinking this might be something totally random since Lynch normally causes colon cancer. It's entirely possible that he has it but we figured the responsible thing to do for Owen would be to find out for sure. It's odd how tests like that can cause a little anxiety even though we already know whether or not he has cancer.
I'm doing alright. I feel really busy. I started back at the gym this month, I've been going at least twice a week. Not bootcamp yet but cardio and some light weights so far. It's like starting over and I'm sore so I know I'm doing a fair amount of stuff. My trainer had a picture on his website saying, "Someone busier than you is working out right now" I know it wasn't aimed directly at me but it got me thinking "I could be at the gym instead of watching tv right now" although sometimes I CAN'T be at the gym but you know... it just made me think so I finally did something about it. I'm not sleeping well and that doesn't help with having energy to workout either. That's not really new for me, insomnia, I think I sleep better during naps than I do at night because at night little noises wake me up. During the day I guess I'm confident things are ok and I zonk out. hehe probably the naps are part of why I don't sleep well at night but I'm not going to complain about quality naps. Yesterday I treated myself to a long massage. I'm a little sore today actually but that means she did a good job, right?
I'm going to skip the journal entry for right now because I'm eager to go pester my husband again. He can't catch a break! I will share a convo Owen and I had the other day. His best girl-pal's mom and I have been brainstorming their 8th grade dance theme. We know we'll be two of the more involved parents so we're coming up with ideas. It prompted this convo with Owen.
Me: (totally joking) *gasp* you could have a Twilight dance!
Owen: We
could have a jump-off-a-cliff dance, it would be equally as popular.
We could do what all the girls are derping about and have a Hunger Games
dance.
Me: We wouldn't want you to kill each other.
Owen: We would kill each other if we had a Twilight dance.
He's so quick witted. He's going to keep everyone on their toes this weekend!
Friday, August 17, 2012
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
Cereals
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!
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
Cereals
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. ;)
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.
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.
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.
Friday, June 29, 2012
Decisions, Decisions...
June is almost over? I can't even wrap my brain around that.
Tomorrow is June 30th, Jesse's 8th birthday. For his birthday we were going to donate whatever monies we would have normally spent on him to a good cause. After much deliberation... do we donate to the Jesse Lyle Hernandez Fund at Northwest Community Credit Union... do we donate to the Relief Nursery... do we donate to Toys for Tots... do we donate to CASA of Lane County where Jesse recently participated in the fundraising walk with Holly? So many choices. We decided to donate to Project Reindeer. It's a project Holly's(and Owen's) school does at Christmastime where they take boxes of supplies to families who need it in the community. Holly is very active with the program and Jesse always wanted to help in any way he could. We feel like that's the most close to home way we can contribute. It took a long time to decide (it takes us forever to decide anything these days) and we feel really good about this decision. Thinking about Christmas in July (ok, june, whatever)
David is doing pretty well. One of the hospice nurses was talking to us this week about his medications and suggested he switch from liquid morphine to pill form morphine that he'll only have to take twice a day. YES, PLEASE! It will increase his total dose from 25mg to 30 mg a day but it will be continuous release rather than taking it every 6 hours when it starts to wear off after 4 hours. The peaks and valleys of the morphine swing should even out a bit and since his neck continuously aches I think this will be a good thing. He starts taking the pills tonight so we'll see how the weekend goes. He may be a little sleepy for a couple of days while his body adjusts to the even flow of medication but since he's been on 20-25mg a day (which is a smallish dose) for a while now they think he's building up a tolerance which could be why his neck aches more now, not enough pain management. We'll see! We still have the fast acting liquid stuff for breakthru pain. It would be nice if we could get him in a not-too-doped-up state of ease. I'm eager to see how it goes. That also means that he would only have to take meds twice a day which would be awesome! Not that his meds would be reduced, he still takes somewhere around 15 pills a day. Yum! No wonder his stomach hurts sometimes. It just means it's less overall things on the to-do list. Or more importantly, I won't have to worry about napping through his meds schedule on wonky long nap days.
Speaking of his stomach, I think it's finally settled down since the last Temodar treatments. Glad he's not starting another round on the first since it took almost a month for his stomach to get over the last round.
Dave's parents are in town for a couple of days. When they got here (without hotel reservations) they realized it might be difficult to find an affordable place since the Olympic trials are going on at the University. Sure enough, everything in town was $150 or higher, even the seriously scary crack house rent a room by the hour kind of places. We busted out the computer and found them a nice little non-chain place up the road in the next town over for a reasonable price and reserved it online. Thank goodness as they didn't have to rush to check in then soon after they arrived they noticed the place put out the no vacancy sign. Yay internets! It's been nice visiting (we're not so exciting these days) but lots of both catching up and reminiscing. We're glad they could come visit.
They plan to leave tomorrow to head for Utah to see David's brother's family but we were saddened to learn that David's cousin (their nephew) took his life yesterday so if arrangements are made for a service in the next few days that may waylay their travels a bit as they may head back to Portland to see family and pay their respects. The Wach family has been through an awful lot and tragedy has struck every branch of this family tree. If there's anything to be thankful for it's that he's not hurting any more, but it's a small consolation to those who love him.
I really don't want to end this on a sad note so I will mention that David's mom brought a box of his assorted papers and such with her. I can't believe they've moved from Oregon to Arizona to Texas with things like this! (I'm sure she's glad to have passed it on!) In this box we found an old journal of David's from when he was 11. It looks like something they did at school where the teacher provided the topic and the kids write about it. We cracked up reading them and wanted to share some now and again. It actually reminds me a lot of Owen's writing voice. This one is... strange. hahaha
April
April is the time of Easter bunnies and eggs and strange weather. April's holiday is strange, it's called Easter. A big rabbit comes around and gives everybody candy and strange looking eggs. That's dumb because the easter bunnie or any rabbit can't lay eggs especially ugly eggs that are different colors. The weather in april is strange.
Tomorrow is June 30th, Jesse's 8th birthday. For his birthday we were going to donate whatever monies we would have normally spent on him to a good cause. After much deliberation... do we donate to the Jesse Lyle Hernandez Fund at Northwest Community Credit Union... do we donate to the Relief Nursery... do we donate to Toys for Tots... do we donate to CASA of Lane County where Jesse recently participated in the fundraising walk with Holly? So many choices. We decided to donate to Project Reindeer. It's a project Holly's(and Owen's) school does at Christmastime where they take boxes of supplies to families who need it in the community. Holly is very active with the program and Jesse always wanted to help in any way he could. We feel like that's the most close to home way we can contribute. It took a long time to decide (it takes us forever to decide anything these days) and we feel really good about this decision. Thinking about Christmas in July (ok, june, whatever)
David is doing pretty well. One of the hospice nurses was talking to us this week about his medications and suggested he switch from liquid morphine to pill form morphine that he'll only have to take twice a day. YES, PLEASE! It will increase his total dose from 25mg to 30 mg a day but it will be continuous release rather than taking it every 6 hours when it starts to wear off after 4 hours. The peaks and valleys of the morphine swing should even out a bit and since his neck continuously aches I think this will be a good thing. He starts taking the pills tonight so we'll see how the weekend goes. He may be a little sleepy for a couple of days while his body adjusts to the even flow of medication but since he's been on 20-25mg a day (which is a smallish dose) for a while now they think he's building up a tolerance which could be why his neck aches more now, not enough pain management. We'll see! We still have the fast acting liquid stuff for breakthru pain. It would be nice if we could get him in a not-too-doped-up state of ease. I'm eager to see how it goes. That also means that he would only have to take meds twice a day which would be awesome! Not that his meds would be reduced, he still takes somewhere around 15 pills a day. Yum! No wonder his stomach hurts sometimes. It just means it's less overall things on the to-do list. Or more importantly, I won't have to worry about napping through his meds schedule on wonky long nap days.
Speaking of his stomach, I think it's finally settled down since the last Temodar treatments. Glad he's not starting another round on the first since it took almost a month for his stomach to get over the last round.
Dave's parents are in town for a couple of days. When they got here (without hotel reservations) they realized it might be difficult to find an affordable place since the Olympic trials are going on at the University. Sure enough, everything in town was $150 or higher, even the seriously scary crack house rent a room by the hour kind of places. We busted out the computer and found them a nice little non-chain place up the road in the next town over for a reasonable price and reserved it online. Thank goodness as they didn't have to rush to check in then soon after they arrived they noticed the place put out the no vacancy sign. Yay internets! It's been nice visiting (we're not so exciting these days) but lots of both catching up and reminiscing. We're glad they could come visit.
They plan to leave tomorrow to head for Utah to see David's brother's family but we were saddened to learn that David's cousin (their nephew) took his life yesterday so if arrangements are made for a service in the next few days that may waylay their travels a bit as they may head back to Portland to see family and pay their respects. The Wach family has been through an awful lot and tragedy has struck every branch of this family tree. If there's anything to be thankful for it's that he's not hurting any more, but it's a small consolation to those who love him.
I really don't want to end this on a sad note so I will mention that David's mom brought a box of his assorted papers and such with her. I can't believe they've moved from Oregon to Arizona to Texas with things like this! (I'm sure she's glad to have passed it on!) In this box we found an old journal of David's from when he was 11. It looks like something they did at school where the teacher provided the topic and the kids write about it. We cracked up reading them and wanted to share some now and again. It actually reminds me a lot of Owen's writing voice. This one is... strange. hahaha
April
April is the time of Easter bunnies and eggs and strange weather. April's holiday is strange, it's called Easter. A big rabbit comes around and gives everybody candy and strange looking eggs. That's dumb because the easter bunnie or any rabbit can't lay eggs especially ugly eggs that are different colors. The weather in april is strange.
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.
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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