Wednesday, February 29, 2012

Leap Day Update

Today was productive but mostly I'm writing to say that tomorrow David has an appointment at the Dr's office at 10:40.   We'll know for sure if the dr thinks he's strong enough to get the Avastin and if Dr gives the go ahead he's getting it right then, lickety split!

We expect tomorrow to be a long slow day but that's ok as long as something productive is happening.  I made sure that transport knows we need 2 people, I'll call in the morning to confirm.  I lined up people to be here to help me move Dave from the bed to the chair and back again. I could probably do it myself but it would be safer for 2 people so we'll go that route.  We also go the Temodar in the mail so I guess we start that tomorrow as well.  OH BOY!  I expect that Dave will be a tired puppy on his birthday.  Luckily he spends a lot of time in bed... the perfect place to sleep!

Keep him in your thoughts and prayers tomorrow, that everything goes smoothly and he makes it there and back without incident.  It will be his first time outside in over a month!  The poor guy must have a raging case of cabin fever!

Tuesday, February 28, 2012


So tonight the forecast is for snow... with no significant accumulation, much to Owen's dismay.  Although around here if we get an inch that will close schools.  OH NOES! SNOWS! (it rhymed, I had to put the S)

Today Rose and I went to a couple of cemeteries and talked to a lady who kind of explained how things work.  I say kind of because it's SO complicated.  Ridiculously complicated.  There's no reason it should be like this.  I can't imagine having to go through it when you're actively grieving.  I think I found the place I want to deal with and so now David and I just have to make a few decisions.  We're motivated to have it all out of the way.  Glad to have something checked off the list.

Tomorrow we're having our satellite upgraded (for free, yay) to HD.  That means that a guy has to come upgrade the dish on our house tomorrow morning in the really crappy weather.  I suppose that comes with the territory of working outdoors in Oregon.  I'm wondering if he'll cancel if it snows at all.  He's supposed to be here between 8 and noon and it will take him 1-3 hours depending on how difficult it ends up being.  So... basically the window is from 8 am until 3 pm.  Not to mention on wednesdays we usually have a nurse that comes out and a bath aid... maybe I shouldn't have scheduled the install on a wednesday?  Let's just say I didn't really have my wits about me, go figure.  I'm sure one way or another it will all work out. 

In other news Dave was up in the chair today for 5 and a half hours.  He had to lay back after a while and his feet are fairly swollen but we kind of expected that.  We're going to try to make a dr's appointment for him in the next few days but to give him a couple of days to recover.  I got him a new TV tray type thing so he can eat in his chair without having to necessarily be at the table.  That might also enable him to use it to prop a book up or the laptop or something although he's showing pretty much zero interest in the computer.  That's how you know when he's really sick, no computer urges.  There's just only so much TV you can watch (I say as we get our satellite upgraded so he can watch prettier tv) so he really needs something else to keep him entertained.  I'm pretty entertaining but I'm only one person! ;)

David's birthday is Saturday.  The big 39!  We're glad that he's here to celebrate with us. 

Plan of Action

David had a pretty sleepy day. He took a couple of naps and every time he wakes up he apologizes for passing out.  HA!  It's good,  I feel like he does better when he gets good rest.  He went to bed at 10:30 tonight, hopefully tomorrow he'll have a longer awake day.  It seems to go every other day.  We heard from the doctor today.  He wants to see David as soon as he can be in the wheel chair comfortably for around 4 hours.  He anticipates that he will be able to do the Avastin (IV chemo) while he's there which takes about 90 minutes plus a dr's visit and transport time.  Dr Hauck's PA mentioned that we may be able to schedule for Dr Hauck to see him at the same time while he's getting the chemo.  Two (actually three) birds with one stone as it were.  The more we can get done with one excursion the better! 

Our nurse offered us a different possibility for why David had those seizures the day he came home.  We have been assuming it was because of the rough transfer (we haven't abandoned that possibility entirely) but she pointed out that he had gotten the Avastin a week earlier and sometimes with chemo the reactions the body has can linger so it could have been a combo of the chemo and the move that pushed him over the edge.  Seizure is one of the rarer but severe side effects of that drug.  It's always a possibility but since he's on the Ativan now hopefully that's under control. 

Dr also mentioned that Dave should go ahead and take the Temodar (pill form chemo) at the beginning of the month for 5 days (like last month) and to start taking the Coumadin again for the blood clots.  Finally!  Dave's left foot continues to swell a bit when he's up in the chair but the swelling doesn't seem to stick around for long which is a good sign.  We can handle that!  

Tomorrow Rose and I are going to go look at a cemetery that I want some information about. (Bless her for going with me for moral support) There was a place across town I drove by the other day and even though I thought I liked it from when David and I had driven by in the past I REALLY didn't like the idea of visiting there for a purpose some day.  It was just kind of a dreary place.  I'm not sure if it's the idea of visiting any cemetery or THAT cemetery but I think a final resting place should be at least pleasant.  It wasn't my cup of tea so the search continues.  I really really don't want to spend a lot of time dealing with this pre-planning stuff but one of the benefits of having David here is that he's willing and able to share his wishes with me.  Actually he's been pretty fantastic about it and we constantly make jokes about the otherwise difficult decisions.  For instance... what was the hymn his grandpa used to sing to his grandma when they bickered?  He doesn't remember but I'm sure SOMEONE in the family must.  He thought it was a primary hymn and while not necessarily appropriate he thought it would be funny to have it sung at his funeral.  Enough about that.  I realize it's probably hard for people to read about this because it makes it all the more real, and part of me feels like I'm going through the motions even though it doesn't seem all that real to me either.  I take some comfort in knowing that once these plans are made there is no rush on them and they don't expire so we can spend our time in better ways. 

So, new meds, an actual time frame to shoot for in the wheel chair, things to organize...

It will be nice to get him in the chair for longer on a regular basis.  I'm hoping to get him to help me make a big batch of mole one of these days!  Our last batch is finally gone and it's time to refill the freezer!  It's only a 5 or 6 hour process... ;)

Sunday, February 26, 2012

One Month of Home

As of today David has been home for a month.  He got up in the chair again for a couple of hours and didn't have to recline at all.  Big change from the man that he was when he came home. 

It doesn't feel like it's been a month, it's gone by so quickly.  We're guardedly optimistic.  Not a lot of thoughts today.  My lower back is hurting and it's not all that comfortable to sit here. 

OH!  I did want to mention that we got a t-shirt in the mail from our friends in Arizona.  There was an American Cancer Society event today in Phoenix called Climb to Conquer Cancer.  The t-shirt is from their team, this is the back:

I knew they were sending a shirt but I didn't know it had his name on it. We had a good cry over it. We can't express how much the love and support means to us.  Thank you! 

Thursday, February 23, 2012

Therapy Cat is theraputic.

Things are going fairly well for David.  He's doing ok on his new medicine dosage schedule, no pain and he's a little more alert.  Yesterday he stayed awake all day until after dinner when he took a little nap and today he took a short nap then was up in the wheel chair for 2 hours.  We had to lay him back a bit but we checked his blood  pressure a couple of times and it was good. Dave bought an electric cuff when he was having irregular heart rate problems a few years ago. (nothing serious)  103/69 at first then 104/76 after a while, in the range of normal for him as it's been fairly low and he wasn't feeling too bad (that he mentioned) so we're just doing what he can tolerate.  Owen and I are getting pretty good at moving him around.  I've found that it's easier to let Owen do the up/down controls on the lift and I do more of the maneuvering.  Owen likes that better anyway since we got the electric lift instead of the hydraulic one you have to pump up.

The nurse is checking with the oncologist to find out what kind of time frame we're looking at for him being up before the Dr is comfortable letting him come in to the office.  

Yesterday we had a rough day.  Not medically, just emotionally.  Everything that could be frustrating was frustrating.  The massage nurse wasn't here on time, the school nurse called home to say Owen was sick and needed to be picked up... she said he had a slight fever of 98.9.  In my universe that isn't a fever!  As it was I think he was just dehydrated.  He said his stomach hurt and when he stood up he got dizzy and a little pasty looking (more than usual) so I brought him home but not for 45 minutes because the nurse was late and I couldn't leave until she got here.  Ordinarily I could have driven the mile to pick up Owen and left Dave alone but I had to be here to let the nurse in since Dave can't really let her in and I didn't feel good leaving a note on the door saying that I wasn't home and to come on in!  So long story short (too late) the lunch place I went to wasn't open, we ended up not eating until 2:00 because the bath nurse got here right after that and Owen apparently wasn't sick he was just dehydrated and after drinking water and eating lunch he felt fine and today he was back to normal.  Oh and I got super annoyed about lunch and ended up ordering pizza.  Way easier. I got lunch cleaned up then Owen and I had eye dr appointments.  I'm glad he was feeling better because I didn't want to have to reschedule. His eyes haven't really changed but he got a new pair of glasses anyway so that he has a backup and they're a little more grown up looking.  I just ordered contacts because my eyes haven't changed enough to need new glasses.  Not that I've been wearing my contacts lately... The Dr commented that he's impressed my eyes haven't changed more because stress tends to really ruin your focus.  He noticed a little of that but not what he expected. OH! And my new atomic clock is somehow off by a half hour!  How does that even happen?!  The instructions say to move it to a wall that faces colorado.  lol... oy.   It was not that any one thing was all that frustrating but all of them together made for an un-awesome day.

There are aspects of being a full time caregiver that are starting to wear on me a bit.  It's not really the taking care of him that's wearing on me, it's more the fact that it leaves me very little time/energy to do other things that need to be done.  Things people can't really help me with like taking a shower and actually drying my hair instead of putting it straight into a pony tail.  It seems like such a minor thing but it takes energy that I would rather expend doing other things or by the time I get around to it I'm too tired to flat iron my hair for 10 minutes.  My concentration is pretty low and I don't feel like I'm accomplishing much.  Emotionally I'm doing ok for the most part, really.  I'm just tired.  I'm not sleeping great at night and during the day I should be napping but I don't get much of a chance to.  I have a hard time sleeping if it's quiet because then my brain is on overdrive so I sleep with the TV on but I know that's not as restful for David.

On the bright side, Olive the black cat of doom as Owen dubbed her when we got her, has been super attentive lately. Especially yesterday.  She is definitely David's cat. She has discovered that she can lay next to him on his bed and cuddle up to him.  Over the last couple of days she's barely left his side.  It kind of makes me nervous since she's the cat that slept on his pillow the night he got more sick but I think this time she's just being a therapy cat more than anything.  I hope.  It gives him a chance to pet her and feel/hear her constant purring and comfort.  He seems to rest well when she's around so she's welcome to hang out any time unlike the other obnoxious cats.  I'm glad she's being social.

Tuesday, February 21, 2012

New med schedule

The nurse came yesterday and said the swelling in Dave's foot/leg could be related to a number of things.  It could be a side effect of the oral chemo, from not being out of bed much, from being in the chair too much (can't win either way apparently).. I read it could be from blood clots but the nurse kind of glosses over that when I mention it.  I imagine they don't worry too much about clots on hospice because there really isn't much they can do about them when you're dealing with someone who is terminal.  They're not even giving him the coumadin.  Overall she wasn't overly concerned about the swelling and said it's fairly normal to have it only on one side.

We did alter his medicine schedule since his pain has been pretty low and he hasn't had any seizures since Jan 26th.  He's now taking the Ativan(Lorazapam) once a day instead of twice and it's a very low dose, .25 ml.  The morphine he WAS taking at .25 ml ever 4 hours and we're stretching that out to every 6 hours.  That makes for an easier sleep schedule as well since they said it's ok to not move him for 4 hours at night but 2 hours during the day.  Because of the way meds need to be spread out and the additional maintenance meds he's taking and trying to schedule it so we can both sleep at night I was giving him meds 8 times a day and we've scaled that down to 6.  It doesn't seem like much of a difference when I say it that way but its much simpler now.  If at any time he's in more pain or has a seizure we can easily increase the meds back up.   I'm probably driving him crazy asking him repeatedly how he's feeling so I can keep tabs on it.  I suspect that the seizures were a one off kind of thing and were due to the pain, not that he's prone to seizures generally.  At least we're hoping that's the case. We still don't know when/if he starts his next at home chemo treatment but we better find out soon because we need to order it through the mail order pharmacy.  I figure they have until the end of the month to let us know what's going on with it before I pitch a fit. 

He's still doing well for the most part.  His right hand continues to gain dexterity.  He can actually touch his thumb to his pinky 9 times out of 10.  If he's moving his arm around it's better, if he's been sleeping then it swells slightly and he can't. 

Owen had a good birthday weekend.  He ended up spending the rest of the weekend (including the holiday) at Tim and Rose's.  When he got home last night he was really unhappy to learn that when you're away from home your chores don't do themselves!  He's getting older and and getting more privileges, with that comes more responsibility much to his chagrin. I'm such a slave driver. ;) 

Speaking of cleaning... The cleaning lady is here.  She really does an awesome job and we're happy to have her.  I barely have time to keep things moderately tidy much less doing the actual vacuuming/sweeping/mopping/bathroom/kitchen stuff she does.  Actually the living room is easy because no one is ever out there!  Suddenly our house doesn't feel as small as it used to when we primarily only use a couple of rooms. Well Owen uses the whole house but I only use a couple of rooms. 

This week we're hoping that David's new med schedule works out, that his leg swelling goes down and that I can catch up on some sleep.  I was kind of a zombie yesterday.  I really need to start napping when he does.

In a totally random aside.  I just saw a commercial for a show called Too Cute! on Animal Planet on Saturday.  A whole show of puppies and kitties being cute!  Dave is just gonna love that! (hahahhahahahaha)  I told him I'm going to watch it and say "Awwww" a lot. He said he figured as much. He must really love me to put up with all that nonsense.

Sunday, February 19, 2012

The Birthday Aftermath

Yesterday and today were the fantastic birthday extravaganza.  Last night my mom and my brother's family came down to visit from Salem.  It was a great family dinner.  I made Shepherd's pie at Owen's request(first time I've cooked since Dave's been home) and Dave got up in the wheel chair, ate dinner at the table with the family and stayed up for about an hour and a half before asking to lay back down.  He did really great!  The transfers went really easy, Owen was my primary helper and he did a good job, but by the time David got back into bed he was very tired and looking a little pale.  He slept for a few hours, got up for an hour or two in the middle of the night and then back to sleep until morning.  I don't blame him, that's the longest he's been up since he got home!  Lots of milestones yesterday.  This morning he looked much better, I guess sleep is the answer to the paleness.

Today we had a party for Owen at Skateworld.  Tim stayed with Dave and my dad came over to replace the toilet.  Yes, the one I mentioned was leaking over a month ago. Thanks Dad's home repair service!  I finally took him up on his offer to help.  It was nice to get a little break out of the house.  I was going to come home mid-day to check on things but the guys kind of gave me a gentle ribbing before I left, "She doesn't trust us" so I just told them no parties and went about my way.  ;)  They were fine without me of course and I'm glad I didn't have to worry. 

A few friends from school, a few friends from life (because school isn't life?) and some family joined us for skating, pizza and cake and then we headed over to the movie theater so they could see The Secret World of Arrietty.  I drove some of them over to the mall but didn't stay because I felt like I had already been gone long enough but a couple of the mom's stayed because they wanted to see the movie too.  At the skating rink Owen bought some fake mustaches.  Apparently they were a big hit!

I love when they go along with stuff.  They aren't too cool for the silliness just yet, I hope they are NEVER too cool.  I adore these kids!

When I got home Dave was doing great so I made sure he was situated and then passed out for a little while.  Ah nap!  Then I woke up, Dave and I ate dinner, Owen came home and left again to stay at Tim and Rose's (good luck to them! He ate a lot of sugar today!)  and I fell asleep again.  No wonder I'm up in the middle of the night now. 

ALSO! Dave touched his right thumb to his right pinky tonight!  SQUEE! I asked how his dexterity was going and he lifted up his hand and showed me he could do it.  He looked almost as surprised as I was!  He's doing a good job of retraining things, I hope his strength continues to increase. 

I noticed just before he went to sleep that his left ankle and foot is looking a little swollen.  It wasn't yesterday so if it's still like that in the morning I'll call the hospice nurse and see if there's anything we should do for it.  For now he's sleeping pretty deeply.  I've walked in and out of there a few times and he hasn't woken up.  Usually he pops his eyes open.  Tired guy! 

We want to send out a huge thank you to everyone who helped make Owen's birthday so fantastic.  He really had a great birthday!  Dave's had a couple of busy days and he was thankfully around to see his boy turn into a teenager and now we're looking forward to David's birthday in a couple of weeks.  No matter how bleak things can get there is ALWAYS something to look forward to.

Friday, February 17, 2012

On the Eve of Teendom

In about 45 minutes from when I started writing this it will officially be Owen's 13th birthday. He didn't come into this world easily.  My pregnancy was difficult with full time nausea and the last month on bedrest.  He was born at 37 weeks after my doctor decided it was too risky to keep going with the pregnancy and induced labor.  13 long hours of back labor (my tailbone hurts just thinking about it) and he was born via urgent c-section at 12:48 a.m. on February 17, 1999.  6 lbs 12 oz and 19.5 inches long.  He had a heart murmur from being born a little early but that closed up by his 1st birthday.  He lost a lot of weight in the hospital, more than normal, and was in preemie clothes when we took him home.  Such a tiny little thing.   I noted to David how I thought it was strange that O slept through the night after he was born.  David remarked that no... actually I slept through the night.  David had stayed up all night with him while I passed out for a few hours. I had no idea.  From the beginning he has always been a wonderful father. 

After that pregnancy and subsequent postpartum depression we decided not to have any more children. Owen was proving to be enough for us and we agreed that we would be better off if we could outnumber him.  He was a very smart, busy and willful child.  When he was two a friend pointed out to us that we would tell O no and then not follow through and that was probably part of our problem with him.  At first we were offended but after we got over ourselves we realized he was right and it took a good couple of years for us to prove to Owen that we meant business when we said no.  Energy we feel now was definitely worth exerting when he was young.  I think that friend probably saved our marriage and the fate of our really wonderful child.   

When Owen started kindergarten he went from being an only child who interacted almost exclusively with adults to being in a kid environment with socialized peers.  That transition was rough for him.  He couldn't remember names and referred to kids with descriptors like, "That little man in the green shirt".  The social aspects of school were fairly lost on him.  His strong sense of fairness and justice made for some "passionate" altercations.  He's always had a strong sarcastic sense of humor that only his best gal pal actually understood.  They're still good friends and I'm confident that sarcasm was the glue that has kept them together.  He already knew some basic math and his alphabet and really remedial reading.  By the end of kindergarten we had gotten World of Warcraft and he REALLY wanted to play but it was annoying to have to read him every quest so I told him he couldn't play until he learned how to read.  Seriously the best motivator ever... of course then we realized he could read general chat and didn't let him play much after that.  Parental Fail.  That was really his first foray into the world of gaming. 

By the end of elementary school he was at the top of his class in all the state testing, his teachers talked about him from year to year so his new teachers already knew all about him and were more than happy to have him in class.  I always helped out in his classrooms so I knew what the teachers would say during conferences but David always came along so he could hear it too.  How his teachers are tickled by his writing style and impressed by how easy academics come to him.  In fact at one point he was bored with how he felt like some of the other kids hold him back because they don't learn as fast as he does.  He even once commented that he felt he was smarter than his teacher. That went over well... We quickly taught him that part of being smart is learning to keep your mouth shut, a skill we could all work on on occasion.  He wanted me to home school him to combat that issue.  HA!  um, no. We're not worried about the academics, we're worried about the social and he's not going to get that at home with me. Although I am very social. ;) 

Now he's in middle school. I have always said that as he gets older the hard stuff gets harder but the fun stuff gets way more fun.  At his last parent/teacher conference I was trying to go through his work while he filled out a self-evaluation. 

Me: (cracking up at his clever writing sample while listening to him read his evaluation out loud) Owen: Things I'm good at:  I'm awesome     Things I need to work on:  My humility.

He said it outloud to amuse me but he didn't actually write it, I had to check to make sure.  I'm sure his teacher thought we were crazy it took us so long to get through the short stack of papers because I couldn't stop laughing.  He'll do anything to make me laugh, the boy has no shame.  I'm so proud of his complete lack of caring what other people think.  I hope he holds on to that quality for dear life. 

Honestly the only other person who can make me laugh as much is David.  I guess Owen gets that from Dave.  He's really the best parts of both of us.  He's got an awesome, albeit cheesy and obscure, sense of humor.  He's a man with his Dad and goofy and loving with me. He still holds my hand in public without fear of who will see him, I've always told him that girls are impressed by boys who are nice to their mothers and so far he's buying it. ;)  He's very into tech toys and all things nerdy, it's not a bad word in our house, we take pride in our nerdiness.  He's smart as a whip and respectful and very thoughtful and curious.  He's got his quiet and introverted side like David and when needed he's learning to be an assertive extrovert like me.  He can wiggle his ears and do the Billy Idol face like Dave but has got my little button nose and round orb of a head.  Oh and as an aside it was just confirmed to us that after nearly 13 long years of trying he has FINALLY gotten taller than me.  A landmark day in any young boys life! 

Through this whole year so far Owen has been unbelievable. Maybe he's feeding off our energy or maybe he's got our pluckiness but he's really doing well with all the difficult things we're dealing with and we hope we can continue to help him as we journey on together.  I keep reminding him that we're a family and we will figure it all our together, no matter what.  We're incredibly proud of him and even though that teen attitude has started to creep in we're also seeing a mature side of him we like the looks of.  For his birthday dinner we're going to get Dave up in the wheel chair to come out and visit.  That will be good for all of us. 

Wednesday, February 15, 2012

Happy Valentine's Day!

It's Valentine's Day!  We had a really nice day. 
The massage therapist from hospice came over today and worked out some kinks in Dave's neck, back and arms.  The whole place smelled like lavender and Dave took a nice nap afterwards.  I went in the bedroom to check on him when she left and he mumbled something about how he didn't want to move because he was so relaxed.  HA!  I should have stayed in the room to see what she did exactly, it would be nice to have that magic touch.  Maybe next time, but it was nice for him to get some relaxation. 

Tonight Owen went to Tim and Rose's house and then skating (to warm up for his birthday party)  I hear he may have a bruised behind but it's good for him, it builds character.  hehe  He finally decided on skating and a movie for his birthday.  It's interesting to watch him set up the invite list and navigate the social workings of middle school (well if I invite A I have to invite B etc etc) I think it's harder to watch your kids go through it than it was to go through it ourselves.  Again with the character building. 

Since Owen was out of the house we got a quiet evening at home... to nap!  hahahaha we're an exciting old couple! ;) Actually it was nice to get a little nap in and woke up for dinner.  It's been more helpful than I ever could have imagined to have dinners being brought to us.  It's just one thing I don't have to worry about or plan for right now in amongst the million things I DO need to think about and plan for.  I know it won't last forever but we're not taking it for granted while it lasts and I want everyone to know how much we appreciate it.  Thank you!
After dinner we watched some Big Bang Theory (we never got into it until now so we have a lot of catching up to do!) then busted out the video camera and talked about a couple of photo albums.  It took about 45 minutes of video but it was fun to go over things that we've talked about a million times but to catch it on film to have forever. We have more pictures to go through, lots more, but it's nice to have started somewhere so that the ball is rolling.  We're slowly checking things off our to do list.

We've been spending so much time together, mostly out of necessity but also because we enjoy it.  When we first got married we worked at the same place so we were together basically 24/7.  About 16 months later I was pregnant and had to quit because I had pre-eclampsia and was sentenced (lol) to bedrest. It was a huge adjustment because we spent our whole relationship up to that point spending the majority of our time together to suddenly only seeing each other in the evenings.  He took amazing care of me when I really couldn't do anything but lay on the couch even though he couldn't be here with me all day.  Karma points maybe?  ;)  Eventually we got used to being apart all day (like a normal couple) and now here we are, 13 years later, together 24/7 again.  It's a really good thing we like each other!

While David was in the hospital we kind of felt we couldn't see past the next 24 hours and now that we're home we're starting to make plans for things.  Not long term plans but little things like Owen's birthday party and now, while I was looking up what kind of cake to order him, I started asking Dave what flavor cake he wanted this year for his birthday (March 3rd).  We always get a cake from a little bakery called Sweet Life because that's where we got our wedding cake almost 15 years ago when it was just a couple of sisters working out of their garage.  Now it's a well known bakery and getting special occasion treats from there is something of a tradition for us.  Dave actively participated in the conversation about what he wanted on his birthday cake... 2 weeks away.  That's the longest he's planned ahead for anything since the first of the year.  That thrills me. 

OOH! The other thing that thrills me!  He has a new trick! Monday night he said "look what I can do" and showed me that he could tap the bed with each finger on his right hand.  Before now he's just called it his claw as he had no dexterity at all.  He tried touching each finger to his thumb and could do all of them except his pinky which was a couple inches away from the thumb.  How exciting, this is really great news.  Today when I asked how his hand was doing he tried it again and the pinky and thumb got much closer, it's just going to take some more practice.  He has to retrain those muscles and what's left of the nerves to work in a different way than they did before.  Any improvement is fantastic. I can't wait to show the nurse tomorrow when she pops in for a visit.  She was out sick for a week and a half (we had a different nurse during that time) and when she got back she noted that his coloring looked better and he was more alert.  Before her unscheduled break David could barely stay awake long enough for her 30-45 minute visit. Now he's stays awake most of the day with a couple of short naps.  Now if I could also take a couple of short naps we'd be golden.  I'm pretty sure I made one of Dave's co-workers ring the doorbell 3 times the other day when he delivered dinner because I accidentally passed out on the couch.   oops. /blush  You'd think with the bell being right near me I'd wake up but I guess I thought it was my cell phone and I was fumbling around trying to find it until I realized it was the door.  hahahahaha,    I don't think I'm that sleep deprived but I'm very busy during the day and just kind of at capacity so I cat naps any time I can. 

All in all it was a very nice Valentine's Day and I'm looking forward to helping Owen with his birthday party this weekend and thanks to the friends who have volunteered to make sure his party goes off without a hitch and that Dave is covered so I can be where I need to be for both of my boys, erm, I mean men... I can't believe we're about to have a teenager!

Saturday, February 11, 2012

Time flies

So it's been a couple of days since my last post.  Nothing bad going on, we've just been busy and lack energy and focus to sit down with my thoughts.

Yesterday they did the equipment swap.  It actually went a lot better than expected, we ended up easily sliding David onto our old bed where he stayed while they broke down the hospital bed and set up the new one.  The new one is much better than the old.  It's the same basic bed but they included a "geo-matt" mattress topper (like an egg crate kind of) to help distribute weight and make sure he doesn't get bed sores.  The new bed also has better rails that are more out of the way than the old ones and it's longer, the mattress is the same size but the frame is longer so his feet won't rest against the bottom.  Whew!   The wheel chair stayed the same but they brought a new lift that is electric instead of hydraulic which is super awesome and then a new sling.  The old one was called a U-sling that didn't provide enough support to his body OR his head/neck but the new sling is a full seated one like a hammock you might sit in AND this one gives him full support all the way up to his head.  Excellent.  We feel much safer moving him around this way.  We figure we'll get him up in the chair once at least every other day as he can tolerate it.

The first day up in the chair (monday) his blood pressure dropped pretty significantly but this time his bp stayed up fairly normal. That's a good sign, I hope that trend continues.

I've been told numerous times that we need to be video taping him, more for the voice than the images but we both felt silly recording him laying around in bed doing the old vultures from jungle book routine, "What do you want to do?  I dunno, what do you want to do? Now now don't start that again!"  So instead we decided that we'd dig out his old travel pictures and put them in albums and talk about them.  He always has such great stories.  We found a whole box of pictures still in the envelopes from the store from a steam train chasing trip his family took in '93 to Austria, Hungary, Poland, Czech/Slovak (a few months after the split), Germany, Sweden and Norway.  Whew!  13 envelopes of pictures!  We spent last night identifying where each envelope was from, thank heaven for google and for him taking pictures of signs.  Today I'm going to put them in an album and then we'll go through them and record his stories from what he remembers.  He has an amazing memory and is a good story teller.  He remembered basically what order the trip went in and little details like that they ate at Pizza Hut in Hungary but that it wasn't what they were expecting.  I even heard a story last night that I had never heard before!  His Mom will be amused by that since she thinks I've heard all the family stories.

We also found pictures from high school (he said I could toss all the ones of old girlfriends but they kind of make me laugh so I didn't toss them all, especially not prom!  HA!) track and cross country, an Alaska highway trip with his parents and then going to school in Alaska.. lots of random adventures.. The man was lucky and got to travel a lot with his family growing up and he definitely instilled that travel bug in me.   I can't wait to start recording him talking about all this stuff.  He gets so excited, a side of him that I get the impression not many people have gotten to know. He's more the strong silent type... or as he likes to say, when you sit there being quiet people keep talking and you learn all their secrets.  Everyone nervous now? ;)

Owen's birthday is in less than a week!  13 on friday!  He still can't decide what he wants to do, we told him he could have a party and that hasn't changed although I'm nervous about leaving Dave alone (not alone, just not with me) for very long.  O wants to DO ALL THE THINGS but I'm trying to get him to narrow it down.  He's been more engrossed in deciding what high tech toys he wants for his birthday.  He's planning to ask for money from everyone and then use it to get the "toys" he wants. He's looking at a gaming mouse, a gaming keyboard and a wireless headset because he always snags the cords and breaks them.  Since that's not something Dave has ever really cared about much he's deferring to Tim to help guide him.  It's nice that O has Dave's best friend to turn to for manly nerdy things.  Especially that Tim and Owen can bond now, while Dave is still here.  I know I won't be able to be all things to him as he navigates through the teen years but it's nice to know I've got backup in all regards.  Ok ok enough with the mushy stuff. 

Got to get back to business! Hope everyone has a great weekend.

Thursday, February 9, 2012

Nap time!

The last couple of days have felt very busy and we've been very tired but we're still moving in positive directions. 

Yesterday the cleaning service came and REALLY cleaned the house.  I don't think the whole house has been swept/mopped/vacuumed all at the same time since we moved in!  Normally you just do a room or two at a time.  It's been so easy to spend a minute to tidy up, esp in the kitchen.  It's such a weight off my shoulders. Even Owen, who was uneasy about strangers cleaning his room, was pleased with the outcome. 

Today the physical therapist and nurse came over at the same time and we got Dave out of bed.  OUT OF BED!  For the first time in 2 weeks!  It was not without it's hiccups, I'll spare the sordid details but needless to say it did not go as planned and was more difficult than it needed to be because the sling they sent to cradle him was not ideal for his physical limitations.  He stayed in the chair for less than a half hour but he did get to go out to the living room for a bit which was nice to get him the heck out of the bedroom!  I'm really glad we did this test run today because we HAVE to do it on kind of a time line on friday. 

Friday we have to swap out the rental furniture.  I feel like I've mentioned this before but I'm too tired to go back and look so I'll just risk repeating myself (repeating myself is kind of what I do).  At the hospital the social worker or the case manager ordered the rental furniture through company A and hospice only works with company B. (probably good info for them to find out before ordering equipment)  Hospice is a not for profit and company B gives them a better rate, I don't blame them.  So I guess it's normal to have to change out the rentals.  Normal, but really frustrating.  ANYWAY, I called company B today and asked them to send out a couple different slings so the physical therapist can determine which would be best for David.  They said they will do that.  Friday morning we're doing the big swap.  I hope it goes more smoothly than today. When he was up in the chair his blood pressure dropped pretty low.  That's something we'll need to watch.

After the transfers David slept for about 4 hours solid.  I took advantage of the time and slept for a couple hours as well.  Nap time is awesome time.

Besides all that excitement (we can really only handle one exciting thing a day it seems) David is doing well.  His hands, which not back to "normal", are getting a little more dexterity.  Today he brushed his teeth by himself!  It's such a small thing in the grand scheme but when you're reliant on someone else for everything and you can finally do something for yourself it's HUGE!  YAY!

Monday, February 6, 2012

Cleaning For The Cleaners?

Tomorrow the house cleaners are coming thanks to some of my extremely awesome friends!  Today Rose came over and we "pre-cleaned" which really means we got things out of the way so they can actually CLEAN things.  It's going to be so nice!  I wish I had more time to clean things up, like spring cleaning type of cleaning but eventually I will get around to all that.  It's not exactly a priority right now, go figure.

Dave had a pretty good day, just tired a lot but he has been up for the last 4 or 5 hours.  We find that if we give him a little caffeine in the evenings he can stay up for a few hours then sleep really well.  Nights that he doesn't have an awake period before bed he doesn't sleep as well.  We're learning.

Today we got a reclining wheel chair delivered.  We're hoping he'll be able to use it soon but time will tell.  We also found out that since he's in hospice and the hospital social worker didn't set up the equipment with the same company that hospice uses they have to CHANGE OUT THE EQUIPMENT!  Including the bed he's already in.  So like... how is that going to work exactly?  Those companies have to figure it out and we'll just wait to find out.  I'm not going to let them do it before he's ready to be moved safely and I mentioned that to the nurse today and she was in full agreement so I'm glad she's got our back.

Tomorrow the social worker is going to stop in to check on us and see how things are going.  I'm glad we went with hospice because they seem to give us more services than we knew we needed.

Saturday, February 4, 2012

No News Is Good News

Nothing new really.  Just same old routine, weekends seem to be a little more quiet around here.  Dave is on day 4 of chemo and still seems to be doing well with it.  He's supposed to take it on an empty stomach just in case he gets nauseous but tonight we forgot until he had already eaten so he took it anyway.  No nausea! (whew) He's been so tired today, I feel like I say that every day but it's been even more noticeable.  He mentioned that he's sorry he had such a melancholy day.  There are definitely good days and bad days, the best we can hope for is more good than bad. 

Owen left bright and early (for us!) to get a haircut and go to my little brother's last basketball game then to a year end party at a make your own yogurt sundae shop.  We really had to twist his arm!  My mom came and stayed with Dave while I ran some errands, he pretty much slept the whole time she was here except for being up for a bit to eat lunch.  Thank heaven for left overs from dinners people have brought.  I don't think I've had to cook yet and that's been a huge help!  Oddly the kitchen seems to get just as messy, go figure. I imagine that soon I will be able to work cooking into my routine but it's just nice right now that I don't have to worry about it.

Dave and Owen's allergy symptoms seem to have gone away today.  Mine still linger.  I would have thought it was a cold except that my eyes were burny and my asthma kicked in a bit, that only happens with allergies.  No bubble for David just yet!

Hopefully tomorrow will be as uneventful!  

Friday, February 3, 2012


It was a busy day today!  First an appointment with a bath aide then physical therapy then the nurse! David got little naps in between so at least he wasn't too worn out.  He woke up for dinner and stayed awake while we all watched Tron together.  That's actually more than I did but it's kind of how I roll... we eat dinner and then I fall asleep while we watch a movie.  Traditions. ;)

The physical therapist taught me how to use the hoyer lift (the mechanism we would use to move Dave from the bed to a wheel chair) and while we didn't use it on David I DID use it on Owen when he got home from school.  Hahahaha, he was amused by the whole process and it gave me some experience using the lift so it worked out.  The PT also ran over some gentle stretches and exercises we can do at home.  David has lost a lot of muscle mass so we have to be careful with joints like his shoulders that could pop out of the socket if we got too aggressive.  That doesn't sound like fun for anyone. We're going to start sitting him up in bed more regularly with the goal of helping him to sit almost entirely upright but we have to take it slow.  We do have a blood pressure cuff at home so we could always test it ourselves if we're concerned about changes but we're pretty confident we can tell if he's not reacting well to moving around before it becomes a problem.  I follow his lead and sit him up until he says stop then lay him down when he's had enough.  The PT will be out again next week, he's also ordering a different kind of wheel chair than the one that's on order.  He thinks we need one that reclines a bit and the feet go up, like a recliner with wheels in a way.  That way if he needs to lean back he can do that without necessarily having to get out of the chair right away.  I hope we can use it! It would be nice for him to, at the very least, be able to leave the bedroom.  The sunlight doesn't come straight in this window and it would be nice for him to be able to get some sun on his face.  Yeah, it's been sunny!  In FEBRUARY!  Crazy, right?  The crocuses are starting to bloom and everything!

There is an air stagnation warning  in the area all through the weekend and we all woke up feeling kind of yucky.  Our allergies kicked in and we're a little stuffy with the bad air quality.  I noticed a lot of friends on facebook and in texts making comments about not feeling well either, I'm hoping it's just the air and that we're not all getting colds. That's really the last thing Dave needs on top of everything else.  I don't want to have to put the boy in a bubble. ;) 

This is day 3 of the 5 day course of Temodar.  So far no side effects like nausea so that kind of rules.  If he had bad side effects he'd have to stop taking it.  His arms/hands are about the same as far as movement goes so that's also a positive.  His left arm moves pretty freely and I sometimes encourage him to feed himself if it's something easy but he keeps telling me he's not left handed so it's difficult.  I find myself trying to do things left handed myself just to see what kind of obstacles he might be encountering, it's harder than I realized but I pipe back at him with, "I'm not left handed either" and it sparks up a few random Princess Bride quotes because we can't help ourselves.  There's always a reason to quote Princess Bride!

The nurse who saw him today is the admissions nurse who saw him last Thursday when he was seizing and basically unconscious.   His regular nurse is a different lady but she was off today so the first nurse came out to check in on us and bring more supplies.  She was really surprised and happy to see him as alert as he was.  She said his vitals are really great his heart and lungs sound good, his BP was 120/80 and his heart rate and oxygen are both really good.  All good signs, she mentioned that already he's kind of a miracle.  She did notice how much weight he's lost, it's really obvious.  Actually not unlike when we met a million (17) years ago when he was a bachelor who rode his bike everywhere and weighed 130 lbs.  Not that he's back down to 130 but he's headed that direction.  I'm kind of glad we can't weigh him because we'd kind of rather not know. We've got him drinking protein shakes once a day (thanks for the hook up on that, dad!)  so hopefully that will help him keep whatever remains of his muscle and build a little back up if at all possible.It also helps that the milk shake nature of the protein mix hides the flavor of this probiotic stuff he's supposed to drink so that helps him choke down the healthy stuff too!  He doesn't so much like the yogurty flavor of the probiotics, i might have to switch to the pill form to save him some of the ick. 

I like that he's been more awake in the evenings, I think it helps him sleep better at night.  I'm sitting here typing away, watching LOTR: The Two Towers, and listening to the cats pounce at each other up and down the hall and occasionally thump into his bed when they make it all the way to our room...  all the while Dave is sleeping soundly.  Much better than the restless sleep he had a few days ago.  I need to keep that guy awake more often so he gets good quality sleep!

Thursday, February 2, 2012

One Month

One month ago today David was admitted to the hospital.  We didn't know what was going on and we were stressed and restless and hopeful that it was something curable and benign.  A full month later and our reality is much different. 

We've learned a lot in the last month about strength.  We know our support system is stronger, that our love is stronger and that we are stronger than we ever thought possible. We've learned that a little patience goes a long way and that anger is a largely wasteful emotion.  It doesn't mean we don't have our moments of anger, but they are few and far between.

We've learned that when you're in the middle of something life changing every day feels like forever, but when you get answers and look back on those struggles they seem like they only took a moment.  This past month has been both the longest and shortest of our lives so far.  We're hoping for much more time together as a family and that the time feels like it's going slowly so we can savor it.

We've learned that it's important to tell people how you feel about them while you have the chance.  We feel blessed to have been able to say the things we need to say to each other, even if they aren't easy. 

We've learned that our friends and family are more amazing than we ever knew they were so in part we've learned not to take people for granted. We've also learned that it's important to talk to people.  When you open up to friends and family you never know what resources they might have and people they know may come crawling out of the woodwork to help you.  You never know who has experience navigating things like social security, health care, hospice, legal matters like power of attorney,  insurance, social work... things you don't normally need to know about but find it extraordinarily helpful when others can help guide you.

We've learned that laughing is a whole lot easier than crying.  There's always something to laugh about, even if not everyone gets your joke or thinks it's funny.  If you can laugh then you're doing a lot better than you could be doing. 

We've learned that everyone handles grief differently and there is no right way or wrong way but almost everyone can use a hug regardless of how they are handling things.

Personally I've learned that it comes in handy to not be shy about calling doctors and being "that wife".  If you get what you need because of it it's totally worth it.  I've gotten doctors cell phone numbers and direct lines to insurance people and prompt appointments all because I haven't been afraid to be the squeaky wheel if that's what it takes.  I'm willing to do that and if anyone reading this is (heaven forbid) ever in a situation like this don't be afraid to be an advocate for yourself or your spouse or your friend or family member who can't do it for themselves.  I think it has made all the difference in this because if it were up to David I don't think he would have ever gone to the dr until it was even further progressed than it was when I made him go and we'd have even less time together now.  Every minute counts.

Maybe one of the most important lessons we've all learned in our own way is to accept help.  David has to rely on people for everything and that was very hard for him but I'm proud of him for coming to terms with it instead of getting depressed and withdrawn.  I've had to accept help around the house and to allow people to take care of me while I take care of David.  I don't like asking for it so it's been nice that people have been right up in my face helping and not letting me say no, even when I try.  Owen has learned that people are there for him to talk to and to do things with to keep his mind off things he'd rather not focus on.  And they're also there to NOT talk to if that's what he needs.  In his pre-teen-ness sometimes he'd just rather not talk and that's ok too.  (t-minus 15 days until Owen's a teenager! Dave definitely has to stick around for that!)

Thank you to everyone who has been there for us in a variety of ways.  Who have sat with us almost every day or send notes or cards or prayers, who have brought meals and hugs and who visited in the hospital and at home.  Those who love us from near and afar and offer their support in whatever way they can, we feel it and we're thankful.  Mostly we've learned to be thankful and to count our blessings.

David starts physical therapy tomorrow.  Hopefully soon he can be in a wheel chair at least around the house then build up to being transported for treatment if the doctor gives the go ahead.  I've been sitting him up in bed more as long as he is comfortable.  Baby steps.

Better Late Than Never

I called the Oncologist again and let them know I'm not please that I hadn't heard from them yet and I have been calling since Monday.  The nurse said we had an appointment at 2!  ACK!  Since we're not 100% comfortable moving him and none of our other questions had been answered we weren't feeling very confident in whatever was going on. It turns out the Dr DID call someone last night, he called our hospice nurse.  Not really sure why but I mentioned that I wasn't happy about that.

Then I called insurance to double check that if he did go in to get the Avastin (chemo) that it would be covered since hospice was telling me that it wouldn't be covered.  Insurance said yes.  Then I called the social worker at hospice to find out if anyone could administer the drug at home.  Turns out that of all the people who can do at home IV chemo in eugene/springfield no one can do Avastin.   Handy. 

I also talked to our hospice nurse who was going to come out to see us today and discussed everything with her, that's when she told that the dr called her last night.  Thanks for letting us know!  It was a frustrating morning.  Everyone was telling me different things and conflicting things and I really wanted some clarity.

Dr Sharman's (oncologist) nurse called and shed some light on everything.  After talking to everyone involved and a long discussion with the Dr she finally gave us answers.  She said the Dr believes that David started having seizures on thursday because of the trauma of his transport home.  His body is weak enough that it set off some negative chain of events and he doesn't think that it's worth the risk of transporting him right now.  I'm relieved to hear a medical professional say the same thing.  He is on the fence about how effective the Avastin would be at this point but he's not ruling it out.  The plan of action is to get a physical therapist out to the house (we can do that with hospice) to try to get Dave more mobile.  They'll monitor his vitals and make sure he's safe.  Dr Sharman feels that if Dave isn't strong enough to get moved to the office in a wheel chair then he's not strong enough to be able to get the Avastin.  That makes sense to us and we're glad to have some confirmation from a doctor that our gut was right about the dangers of moving him.  Lastly she said that they don't want to talk to our hospice nurses, they want to talk directly to us so there is no middle man.  Hopefully that will take care of the problem where our nurse was contacting him and he was getting our info third hand although she was giving him her professional opinion as well. 

Our nurse also mentioned to us that they've had fragile patients decide to be transported when the dr and nurses felt they weren't stable enough and they've had people not survive the transfer.  SO not worth the risk.

Hopefully the physical therapist will be able to help David get stronger.  In the mean time we were told to start the at home chemo, the Temodar.  It's double the dose than what he took before but it's only for 5 days a month to try to hit it hard.  Tonight was the first night of that and no side effects to speak of.  I hope that trend continues.

I also heard from Dr Hauck's (the neurologist) physican's assistant, Nicole.  She's been really fantastic but I left her a message with her service on friday and she apparently never got it.  The whole point of a message service is to give them messages.  Total fail.  She ended up giving me her cell number and told me to call at any time.  Awesome. She thinks they're going to leave David on the same steroid dose instead of lowering the dose like they originally intended but she's going to check with Dr Hauck.  They don't want the swelling in his spine to kick back up and cause him more problems.  She's going to get back to us with a final answer but it sounded like they weren't going to change it just yet. 

We're glad to have a plan of action even if we can't do the other chemo just yet it isn't out of the question.  All we want is for him to be able to fight this in whatever way we can as safely as we can.