Friday, October 26, 2012

Ice Cream!

This was a treatment week.  When Dave got up in the wheelchair he was hurting pretty bad from his shoulder (damaged rotator cuff?) and his neck so I gave him some extra pain meds.  This has become pretty normal for him, his neck and shoulder are always sore but the meds he takes usually manage the pain.  On days he gets in the wheel chair it's worse because he has to stabilize those areas in different ways so the pain is different.  Anyway, the combo of the morphine boost and the lorazapam kind of knocked him out.  In the waiting room I was showing him something and he was telling me he couldn't actually focus. OOPS! It wasn't really more than he's taken in the past but the two drugs together compound each other plus when they were drawing blood he was trying to take deep breaths (because that helps the blood flow easier from the central line) and he almost hyperventilated and we think that contributed to his meds hitting him extra hard.  He gets a little goofy when he's like that so at least he's sillier than normal.  That's saying something because he's normally a little silly. Quietly silly.

You may recall that 6 weeks ago or so his central line was leaking a little and the nurse was concerned about it.  That seemed to clear itself up and then this week a couple drops of blood came out from around the tubing.  They're not doing anything except watching it and so far the actual line is working just peachy so they can still draw blood from it and inject all the things they need to inject so it's alright but we're definitely on edge about it a bit.  If it's not one thing it's another!

We finally got the results of the genetic testing back. He does indeed have the cancer gene which means Owen has a 50/50 chance of having it. We took it in stride and come to think of it we haven't even actually told Owen yet.  Not that we're hiding it from him but we have made a conscious decision to not make a big deal about it.  He already knows that there was a possibility Dad could have it and we discussed what that would mean for him but we never actually confirmed it to him. I guess we should do that soon... The doctor told us what the protocol is for testing and for cancer screenings. It's pretty aggressive if you have the gene although thankfully David won't have to go through all of that since he's already got the least common cancer you can get from the gene.  I told him he should have played the lotto instead. Anyway, they don't recommend kids get tested before 18 and the recommended screenings start between 20 and 25.  Then you have to be tested every 1-2 years.  It's known to most commonly cause colon cancer but can also cause stomach, neurological, uterine and ovarian cancers.  The screenings for everything except colon aren't very easy.  I hope by the time he gets to that age they revolutionize the way they can screen for those things.  Not that he has to worry about two of those... but we have nieces who do. I swear Auntie Marla's gonna start nagging all the nieces and nephews over 18 soon! This is their official warning (that they probably don't read). *snicker* 

Owen and I are doing pretty well. He's busy with school, national jr honor society, video games, he's walking to and from school now although we'll see what he thinks about that when it gets colder and rainier. It's about a mile each way.  I went back to my middle school to see how far my walk was and much to my chagrin it was only half a mile.  It felt like so much further when I was 12-14! He told me he is going to do the 100 pushups and 200 situps programs over the summer.  If he does those and he'll get his braces off probably by the end of 8th grade... He'll be a new man next year when he starts high school!  He is clearly motivated if he's asking if he can walk to and from school! Ugh, I just said he starts high school next year.  Our baby isn't so much a baby anymore.

Oh yeah! And speaking of braces... I'm getting them... again. actually again again.  I had them in middle school then again in high school and now as an adult.  Spendy mouth!  My ortho I had as a kid just didn't do a lot of things right, my retainers never fit right and my back teeth never fit together correctly when he was done and I ended up with all kinds of TMJ problems.  I'm really eager to see what this new dentist can do.  Nov 8th is the day.  It's funny how excited people are to get them on... then they get really excited to get them off.  The grass is always greener?  This ortho said he would put a permanent retainer on my bottom teeth.  I should have had that 20 years ago the first time I got them off! Owen said we get to be braces nerds together.  I'm going to get a box of milk duds and savor them right in front of him before I get mine on.  I'm mean like that... plus I know he'll do the same to me as soon as he gets his off.  hahaha

Nothing too exciting going on. Having an ongoing battle with Owen about getting to bed on time and we had this playful exchange the other night. (this is a repeat if we're friended on facebook)

Me:Why are you still on the computer after your bedtime?
Owen: I'm irresponsible?
Me: What do irresponsible kids get?
Owen: Ice cream!

Yup, that's our boy! 

Monday, October 15, 2012

October is Spelled R-A-I-N

We decided to go with the third party transport place and it worked out fine, it looks like we might have to do the same thing next time. I'm super frustrated but there isn't really anything we can do about it so I kind of have to roll with it.  We're still waiting to find out for sure, should know tomorrow. I have better things to worry about.

Still no word about the genetics test.  I think he gave the blood for it over a month ago and it was supposed to take 2 weeks to get back.  Last wednesday they said 4 more days and then they have to be fed-ex'd back to the dr's office and then we'll hear. So hopefully by this wednesday? It really doesn't matter one way or the other but since that is kind of looming over us we'd like a little closure.  David had treatment again and everything went mostly ok. The blood clotted in their vials again before they had a chance to process them so they had to do a second blood draw... again.  This happened a month ago or so.  His coumadin levels are right on this time.  Last time it was very high if you recall. Now it's right at 2.5 which is perfect.  Let's keep it that way. When we got home Dave took a nap and I went to watch Tim and Rose's son play in his JV football game.  They won by a landslide.  I haven't been to a high school game since my brother played many many moons ago.  It was a lot of fun, thanks for inviting me!

Owen is having a hard time keeping up with all of his homework. It's not that he gets a ton, it's that he doesn't always do all of it or he can't find it in his notebook to turn it in (messy!) or he gets a take home quiz and gets a 60%.  Seriously there's just no excuse for that. I'm kind of at my wits end. I know in the grand scheme of things it's not the most important thing in his life but we all have things we have to do and school is his only HAVE TO thing. Plus, to be morbid, if/when Dave passes he's going to want a buffer when his school work does take a backseat to whatever else is going on. I'm not incredibly concerned about that but the thought crosses my mind. When he's barely getting A's in half his classes it's a very different kid from the nearly straight A+'s he was getting before.  Well... plus he's 13 now and there are GIRLS at school. *snicker*  He even wants to start working out and asked me to get him some weights. Maybe when I go back to boot camp I'll take him with me! HA!

Speaking of... I've been slacking on the gym. On the bright side I just hit my first weight loss goal and lost all the weight I gained since David's diagnosis. About 15 lbs. (in 6ish weeks, not bad) Gaining and losing 15 lbs in a year is probably not so good for my heart I can imagine.  It's actually been really easy and I'm encouraged that it's been 95% changes in what we're eating rather than working out like a fiend.  Some day the fiend behavior will return but for now it's baby steps. I still have quite a way to go but these are sustainable changes and I think Dave and Owen benefit from the changes as well. That also makes it easier.

I've been so tired and stressed.(ironically I'd probably have more energy if I were working out and eating more but whatever..) Nothing major just a lot of little things.  Some of them not even bad things but just things that occupy space in my brain and my heart.  I think I've mentioned this before but Dave and I call it thrashing. It's a computer term that basically means there's so much going on the processor can't focus on one thing because it's swapping so much information around.  It can make the whole system freeze up and nothing really gets accomplished. We kind of froze up a little in the last week. I think things are calming down on many fronts, the stack is popping and features are functioning "as intended" and blah blah other nerdy references I could make but will spare you...  We should have rebooted... twice... ;)

I'll share something that touched my life pretty deeply this week.  How to explain... heh. When I was 16-19 I dated a guy who I ended up getting engaged to. I know, we were kids, it was ill-advised and things worked out well for us both in other directions so no hard feelings.  ANYWAY... his dad passed away just over a week ago. I was just a kid and his family really took me in. I looked to his parents as role models and truly as parents. They never treated me as less than one of their own, praising and scolding alike as any good parent does. hehe It made an impression on me then and helped me stay on a good path at a time in my life when things could have been very different. It's been a very very long time since his family has been a part of my life in any tangible way, or I theirs, but the appreciation and respect I feel for them will never change. I'll always remember Ron as a very warm, welcoming, soft-spoken, quietly hilarious man who gave good, timely advice and support whenever you needed it, especially if you didn't know you needed it. I'm glad I had the opportunity to be touched by his life and my heart hurts with their family as they grieve this loss.  I know he is missed.

So... I'm kind of done with death this year. Dear Grim Reaper, PLEASE STOP!  Love, Everyone! It would be so easy to be angry about the pile up of events but for some reason I feel the opposite. Anger really hasn't touched my mind much at all. It's more resignation. Yup, life kind of sucks, just keep swimming. It's made me more sensitive (is that possible?) and affectionate and willing to tell my friends and family how I feel about them, even if they're like please, not another mushy message! (no one actually says that) It turned off my brain to mouth filter in as far as holding things back, not in a negative way.  It encourages me to be more willing to be patient and forgiving because what if I'm not and something happens? It makes me try to be the best person I can be in whatever way I know how. I have to tell you though it's not easy. Ironically I'm the one I'm not patient and forgiving to. Anxiety sneaks in and weakness sneaks in and I've spent a couple of days in bed snuggling my boys and napping off and on and that's ok too.  It helps me be better when I'm actually awake. haha  Sometimes everyone needs to recharge in whatever way they know how.

This week it's raining. David was telling everyone that the forecast says "Rain starts friday and never ends!" He was right so far.  I guess that's what we get for having 3 or so months of NO rain.  We even had a fire warning in October. That's ridiculous. It figures it starts raining now because David's parents are going to make their way through town to visit for a bit. It will be a busy week. Owen has an ortho appointment where they are moving a couple of brackets AGAIN (does this mean they're fine tuning and he's almost done? Pretty please?), I have a PTO meeting I need to write the agenda for oh and shoot, I forgot about 2 more meetings I need to set up that I forgot about, oops. Thank goodness Dave doesn't have to go in for treatment this week!

I guess it's time to bust out the halloween movies and Dave and I's annual mandatory discussion about whether Nightmare before Christmas is a Halloween movie or a Christmas movie (the answer is probably yes). I still have Monster Squad that I still haven't made Owen watch, what a classic. (not that good but I watched the heck out of it growing up) Why can't I think of any others? I'll pass on the actual "Halloween" movies. Ew, no thank you. Anyone have any halloween movie suggestions that are appropriate for a 13 year old and his parents who aren't big on gorey grossness?

Monday, October 1, 2012

No Decisions Today!

I feel like I've had no time at all to write lately. I have emails upon emails to catch up on and people I want to stay in contact with that I just haven't had time or energy to do. This is why I love texting. Part of my email issue (and my blogging issue to be honest) is that I have to do that at the computer. If I'm at the computer that means I'm not in the bedroom with David. We have an ipad and a laptop but the lappy is tiny, it's great for travel but it's not great to type on, and the ipad is just not fantastic for making long posts because you can't touch type. That sounds like I'm making excuses, mostly I'm just venting.

Since the migraine I posted about last time Dave has been doing fairly well. It took a full week to recover from the dehydration and we think his stomach shrunk because he's not eating as much.  That means his coumadin level was too high.  WAY too high.  His INR (blood thinness) is supposed to be around 2.2 ish and it was 4.4  YIKES! I even knew that was going to happen so I was giving him 1/3 of his dose for a couple of days while he wasn't eating much but it was still too much when I went back to his normal dose.  I'm glad I didn't give him the full dose the whole time. I told his nurse I did that and she didn't say I should do it any differently so I guess it wasn't a big deal that I changed his med schedule.  I think once you're on hospice they give you a lot of leeway as far as meds go.  What's the worst thing that could happen? heh, that's kind of morbid but I get the impression that's the mentality. As long as people are comfortable they're not too worried about anything else.

Treatment went pretty well last time but we were supposed to get the results back from a genetics test and when we got there, all geared up for the answer, we found out they hadn't run the test yet because of a mix up with insurance. That was a little deflating. It hadn't been pre-authorized or something.  I have confirmation now that it has and it's being run so by next appointment (next week) we should have an answer. It really doesn't matter if Dave has this bad gene but if he does it gives Owen a 50/50 chance of having it but if the Glioma is a random occurrence Owen doesn't have to ever be tested for it. We wanted to be sure before we subjected him to that someday. He'll have the chance to decide for himself if he wants to be tested after he's 18. One kind of comforting thing about it is that since David's sister has it (I don't remember if the others were tested) it means that one of their parents HAS to have it, it's not recessive. While that's scary too at least we know that you can live a good long life without ever getting cancer from it so it's not a death sentence. That's good for all the kids in the family to know when they make the decision to get tested.

One little oddity at the end of David's treatment last week was that when the nurse changed the dressing on his central line she noticed it was leaking a little. There is kind of a scab around where it goes into his chest and was just leaking fluid just a little bit.  It could just be from the scab getting bonked around when the dressing was being changed but it's something they're keeping an eye on.  Because he needs more to worry about.  It's a few months old now and they said that's not really uncommon but if it starts to fail they'll have to remove it and I'm not sure what that would mean.  Since it's torture to get an IV it might mean he's done with treatments. We'll cross that bridge if we come to it.

Last night he got another migraine and got a little nauseated. I dosed him up before it had a chance to progress into what it was last time. Crisis averted although he's basically been asleep for the last 12 hours.  I'm so jealous. I'm getting about 1/3 as much sleep as he is! Friday Owen had the day off of school and I pretty much stayed in bed all day so maybe I caught up on a little. I was worried that maybe it was depression, you know where you don't even want to get out of bed? But mostly I think it's just exhaustion because normally I'm not quite that glued to the pillow.

Yesterday was a scary day. David's brother, Chris, has been having a lot of pain and was having trouble walking.  His doctor was worried about a tumor pressing on his spine and they scheduled scans for tuesday (tomorrow). Over the course of a couple of days it got so bad he ended up in the ER. After a very long day of waiting it ended up being some bulging/ruptured discs and he's having surgery this morning to fix it.  Thank goodness it's not what David has. They've been through so much they shouldn't have to go through this too. It brought it all back, everything we went through early in Dave's diagnosis, the not knowing and the fear and frustration of waiting for answers. Watching him be in excruciating pain and not being able to do anything about it no matter how many times you push the nurse call button. We obviously feel for what Chris is going through but I relate more to what Ricki is enduring. It's hard to put into words. I was so scared for them and it's such a relief that it's just his back acting up and it's something they can fix! We're praying for his quick recovery and I hope Ricki takes advantage of someone else taking care of him for a little while! Girl! Enjoy the help! 

It's been a pretty good couple of weeks besides that stuff. My Dad and Holly came over to watch the Avengers as Dave and I hadn't seen it yet. It was good to see them and spend a little time together, plus it was an awesome movie even though I almost fell asleep.  Not because it was boring, just because that's what I do during movies heh. Dave sometimes asks me, "Want to watch a movie so you can sleep?"  Owen had a science project to build a model of an atom... which I helped him with... a lot.  LOL (I hope his science teacher doesn't read this!)  He probably didn't need me to help as much as I did but we made it out of beads and wire and he didn't know how to use my beading tools. I taught him some and he directed me some. Whatever... what parent doesn't help their kids with science projects? It was fun to work on it together.  My mom came over yesterday and I painted her toe nails and she did my nails. Poor mom, I micromanaged because I'm used to doing my own nails but I just shut up and let her do it her way after a while. Someday I'll learn to give up a little control... maybe. It's been a crafty week I guess. I really want to get back into sewing, I have a few projects I need to finish including a baby quilt for my niece who is 9 months old!  It may turn into a first birthday present.  HA!

I really should write more often so I don't end up with a wall of text for every post. One last thought. I'm super frustrated this morning because hospice called to tell me that the (free) wheelchair transport we use isn't going to be able to take us next week because they have the van scheduled for something else. That means we'll have to pay for transport. The reason it's frustrating isn't because we have to pay it's because it's out of our comfort zone and consistency is kind of comforting right now at a time when most everything else changes so rapidly. It's the hospice company's own transport service but they only have one wheelchair van for people who can't transfer to a regular seat. They didn't have enough business so they just got a contract with a medicare/medicaid provider and now they're so busy and they do senior outings and such with the same van.  I don't begrudge them needing to keep their business afloat but I DO have a right to get frustrated when things don't work out conveniently. So now I have to decide if we want to use an unknown quantity for transport or try to reschedule his appointment. The hospice social worker asked if she should call back this afternoon to find out what we want to do. I told her there's no way I'm making a decision about this today and to try me back in the morning.  Yay for no decisions today! RAWR!