Thursday, March 29, 2012

David's Big Adventure

David had chemo today. #3  I always want to capitalize that word, Chemo, maybe because it feels significant even though I suppose it's technically not supposed to be capitalized.  Transport was supposed to pick us up at 10:45 and we got kind of a late start (yay sleeping in) so at 10 the hospice nurse called and said that transport would be 10 minutes late.  That kind of stressed me out because the appointment was at 11:25 but whatever, nothing we could do about it.  I figured that gave me just enough extra time to take a quick shower... along with all the normal things like breakfast and getting David dressed (which takes a lot longer than one might thing), wrapping his legs in ace bandages to keep some of the swelling down, a few various personal care things that I'll spare you the details of...  I did everything except get him in the chair and then ran to take the worlds fastest shower.  I even turned on my flat iron because 25 minutes is more than enough time to get ready and do my hair!

So I get out of the shower and did a couple more things for David, got dressed and went to do my hair and... DING DONG!  Yup, transport wasn't late.  So Owen and I rushed to get Dave into the chair, my wet hair went into a ponytail and off we went.  Apparently the driver thought we were supposed to be picked up at 10:30 so by late he meant 10:45.... which was right on time.  Rock on. At least I got a shower, right?  Small favors.

Owen stayed home because hospitals are boring and Dave and I got chauffeured around in the big bus.  Scenic tour of the nearly flooded town from all the snow/rain/wind we've been having. Tim, Rose and a couple of their kids stopped in at the dr's office to say hi. Rose, Just for a second and Tim stayed during chemo so the boys could play with Tim's tablets.  After playing with Tim's ipad 3 for a while David decided he wants one.  I think it would be good for him and it's something else he can do while he's in bed.  He uses the laptop but it's kind of awkward and he's been wanting a tablet for a long time.  I want to be able to do this for him right now, his spirit has been a little low lately for a variety of reasons and I think being able to be more "normal" might help him.  He DID get to his for reals computer the other day (not the laptop) and while he couldn't stay there long it was nice for him to know it's an option.

After chemo Dave and I went to eat lunch in the cafeteria then we stopped into the ICU waiting area to see Tim and Rose and some of Ransom's other family.  He's doing fairly well from what we've heard.  It wasn't a good day to visit so we'll try him next time.  Hopefully he'll be out of the ICU by then so we can come by to annoy him in our old stomping grounds, the neuro floor!  So far as we know he's making progress that the dr is happy with and it's all kind of a waiting game.  I'm sure it's very difficult for him because he's conscious enough to act like he knows what's going on but no one is really sure exactly how much he comprehends at this point.  I wish we could be there more even if we can't go in the room with him.  It's more about being there to support his family that is supporting him.  His wife and daughters and sister barely go home, his step-son is here from Germany and other various family and friends have been there to show their love and support pretty much non-stop. 

Sunday our niece, Ariana, is moving in with us for spring term.  Aww, like a daughter I never had!  (p.s. I'm not old enough to have a 20 year old so it's like having a grown up daughter that I didn't have to deal with during the teen years, that kind of rocks! lol) We're happy to be able to help her out and we're glad that she has decided to take us up on the offer.  When David was about her age he lived with his sister and her husband for a while when he was going to school and it really helped him out, it's nice to be able to pay that forward.  That's what family is for, right? Oh, and a Harry Potter marathon is imminent!

Monday, March 26, 2012

Is This Real Life?

This has been a rough weekend.  Everything with David is good, or as good as can be expected, but we've had some unexpected news that has set everything back to surreal mode.  I've mentioned our best friends Tim and Rose pretty regularly as they've been hand and hand with us through everything... Friday night Rose's dad, Ransom, had an aneurysm. 

We found out in kind of a funny and fittingly nerdy way as Owen had been playing a game online with Tim and Tim said he had to go because something was going on with Rose's dad.  Thankfully Owen told me and I immediately texted her and she said they didn't know what was going on but they were headed to the hospital.  Ahhh the hospital, we all know it too well at this point.  

David and Owen were fine at home so I settled David in, gave him his meds and the remote and a phone (all a guy needs, right?) and went down to the ER.  They called in the same Neurologist David has, Dr Hauck, as he's the go-to guy for aneurysms and he took Ransom immediately to surgery for a "coiling" procedure.  I waited around with the family (11 of us!) until around 2 am when he was finally moved to the ICU with the assurance from the Dr that everything went as well as it could have gone and that he expected Ransom to be in ICU for a couple of weeks.

Tim and Rose and their families have been our extended family for years..  David has been working for Ransom off and on for about 17 years. I was working for him as well when Dave and I got married and didn't quit until I went on bedrest while I was pregnant with Owen.  In fact... I was due March 12th (Nana's birthday) and Ransom INSISTED that my baby would be born on his birthday.  No way!  His birthday is Feb 17th, that's 3 weeks early!  After getting put on bedrest my Dr decided to induce... on Feb 16th.  The induction didn't work out as planned and at midnight Rose said, "The baby is going to be born on my dad's birthday!"  He jinxed me!  Sure enough, Owen was born on Ransom's 50th birthday.  He's really been something of a father figure to us over the years and David was glad that one of us could be there to offer support to his family while they're going through this scary time.  The whole time Dave was in the hospital Ransom would pop in to say hi and offer his love and support and sarcasm *snicker* to our otherwise monotonous days.  He and his wife, Tami, who is a nurse at the hospital, have been nothing but warm and welcoming and loving to us.  I was glad to be there and felt like I needed to be for a variety of reasons. We're very relieved to know that Dr Hauck is taking care of him.  He's really been a phenomenal dr to David, even though there wasn't a whole lot he could do for him.  We know he's in good hands.

Over the last 48 hours I've been to the hospital again and I hear from Rose and Tim on occasion with updates.  It sounds like he's very slowly getting his wits about him again although he's still very sleepy.  Dr said he'll likely backslide a little but that's perfectly normal and to expect it but don't be discouraged because it doesn't mean he's losing the battle.  Lucky for all of us who love him he's a stubborn kind of fella.

As for David... last night he was complaining a little about his side hurting, I was rubbing it and I must have pushed too hard (not hard at all but too hard for him) on a rib and he yelled out in pain.  He can't feel the skin but he's feeling something inside, I wonder if we bruised a rib somehow or something *shrug*.  Well after a while he let it slip that it ALWAYS hurts and that sometimes it just hurts more than others.  Doesn't he know that we have a million different kinds of pain meds up in this house with access to anything he needs?  I'm not sure why he doesn't tell me, I guess he just doesn't like to complain about things. I'm definitely tattling to the nurse!  So for now we've upped his morphine a little bit to try to keep ahead of it.  The last thing that guy needs is to be uncomfortable.

The plan for this week is to lay low, Owen's on spring break so I'll probably try to come up with something for him to do and then thursday is our big outing to the hospital/Dr for chemo and our lunch date and to visit Ransom since it's all at the same hospital.  I checked with Dr Hauck (imagine his surprise to see Tim, Rose and Me when he came to talk to Ransom's wife) and he said it was fine for David to pop into the ICU for a few minutes in his wheelchair after chemo.

Friday, March 23, 2012

Welcome to Spring!

It's been a week since I've written?  This week has been so strange.  March 20th was the first day of spring but the 21st and 22nd were SNOW DAYS!  We got about 7 inches of snow on the valley floor, a record for this late in the year.  Owen started spring break 2 days early and he already didn't have school on friday due to budget cuts so it looks like he gets an almost 2 week spring break!  Lucky guy!  Boy are we glad the non-slip stuff is on the ramp now with all this icey/snowy yuck.

Last Saturday I snuck out for a bit to go to a baby shower for little Gabriella.  I'm so ridiculously in love with her.  I have some pretty amazing nieces on Dave's side but this one is the first on my side and I'm so happy we've had time to bond with her a bit as she grows.  She's 12 weeks old and already turning over and is learning to balance herself and sit on her own.  When I got home I had a little fender bender in the cul de sac with someone visiting our neighbor.  OOPS!  I'm not entirely sure who was at fault but the insurance companies are figuring it out.  The damage wasn't bad and I got a quick estimate and it sounds like it will be less than our deductible to fix.  Honestly if it weren't a newish car I don't think I'd even bother but since it's a 2011 I would like the bumper repainted.  Otherwise they could buff off the paint the other car left on the bumper and we'd have a couple black scratches and it wouldn't cost us anything.  I'm being a little persnickety but if it's something fixable I'd just rather fix it. 

Sunday my mom's family celebrated Nana's (85th) birthday with a traditional german dinner at Nana's house.  Sauerbraten, kartoffelkloesse, cucumbers in sour cream...  and brussel sprouts?  I suppose brussel sprouts are german but I never thought of them that way before now. (I need that recipe, Aunt Kathy.  It was so good!)  The whole gang came over for dessert and brought us left overs.  We ate dessert first because as we all know, life's too short! Schwarzwälder Kirschtorte (black forest cake)  It was good to see everyone and to meet my cousin's new b/f.  After everyone else left, my brother and his family stayed a little bit longer and David got to hold Gabriella.  He doesn't like to do that much because his hands are still weak but she sat on his lap looking out, leaning against his body so all he had to do was stabilize her.  It lifts his spirits.  I was bopping her around the room and she got fussy so I handed her to Owen who was sitting on the couch. He said, "She doesn't want me to hold her!" and she immediately stopped fussing and smiled at him.  HAHAHA!  He's got the magic touch whether he likes it or not.

David is doing really well.  We've reduced his meds as directed by the dr and so far no side effects to speak of so that's really good.  He's still got the rash on his face, presumably from the chemo but we're not really sure.  It's not too bad but it's noticeable. He's been working more with the computer but says that sometimes his right arm just doesn't do what he wants it to do. His motor skills are lacking and his strength in that hand is really weak.  He's still moving it pretty well and almost "normal" seeming but he's frustrated by the lack of control. Even though it's progress it's still a step back in his mind.  The occupational therapist didn't come out this week due to snow but will be back before he goes to chemo next thursday.

I talked to the Neurologist's nurse today.  For now we're looking at scheduling an appointment with him in a month and for there to be an MRI around that same time to determine what the tumor is doing.  Unless something changes in the next month in which case they'll re-evaluate when/if to scan.  That's just a what-if though and not the path we're all hoping to follow. 

Today David got out of bed and helped me make lunch as best he could.  We've always cooked together but he has always had an uncanny ability to be right where I want to go in the kitchen so him helping while in the wheelchair has some advantages... he's never in the way and if he's in my way it's my own fault because I put him there!  Although I would be happy to have him in my way if that meant he could maneuver himself around.  He's tried propelling himself in the chair and can really only go backwards since it's a pulling motion instead of pushing.  I imagine that would be hard to navigate while going backwards.

After lunch the nurse came to visit, it's the first time our regular nurse has seen him out of bed and she was excited!  After she left we sat down with Owen and watched The Matrix.  First time!  It's fun watching those movies with him that are just kind of pop culture so that he actually gets the references.  I REALLY want to show him Forrest Gump but I'm thinking he won't sit through it.  We're always trying to think of older movies to show him.

This week has been a lot of paperwork and trying to get organized and playing phone tag with social security and long term disability and car insurance and and and... it's probably not really that much stuff over the course of a week but on top of the already even work load it just feels like a lot.  It's a little overwhelming sometimes but thankfully right as I'm about to lose it someone always steps in to help.  Blessings.

I talked with the dad of one of Owen's friends (at the grocery store, the cereal aisle is best place to have intimate conversations about cancer) who just got done with sarcoma treatments.  He said it was mostly just him and his wife dealing with things and all their friends kind of split because they didn't know what to say or what to do or how to act around them.  It makes us grateful beyond words for the friends and family who check in on us and just let us know they are thinking about us and offering to help and praying for us.  Thank you everyone for all the love and good thoughts, the blessings, adding David to the temple prayer rolls and other various prayer lists, the novenas, the weebles, and wrens.  Even his oncologist said a nice prayer before the last chemo session.  We don't believe that all the positive energy hasn't made a difference.  The dr's and nurses have told us over and over that it's miraculous how well he's doing.  A full fledged miracle is too much for us to get our hopes up about, but it doesn't mean we're not open to the possibility.

September 1978:
"In September David started Kindergarten... I was called to be a teacher in Primary class.  Part of Primary is Sharing Time, when the kids are still together, before being dismissed into their classes.  Barbara Cromar presented a Sharing Time lesson on the creation -- how Jesus Christ under the direction of Heavenly Father had created the world, planets, sun, stars, etc. She said that the earth had trees and flowers, but the moon did not.  She then asked, "How is the moon different from the earth?" --I could see a couple of pictures of trees and plants she was holding.  David responded, "The moon has no atmosphere and no gravity."  Barb's jaw dropped with surprise.  Who would expect such an answer from a five-year-old?"

This story really cracks me up.  His mother always says that David has told me all his stories but she shared this one with me a couple years ago and she was tickled that she finally remembered something that he hadn't already told me!  I'm sure Dave is thrilled that I'm sharing these. Oh he knows.  He's actually kind of amused by how amused I am.... actually that sums up a lot about our relationship.  He's is often entertained by how easily amused I am.

Friday, March 16, 2012

Mom's Don't Know About Space Ships

David's parents and sister's family (The Cliffords) were he visiting for a few days. It was nice to see family. The kids gave our cats a run for their money so much so that Colin (our nephew) had dreams about him one night.  It was reported to us that he yelled out, "Bob! Bob!"  in his sleep. Hahaha we yell at him a lot when we're awake!   Thursday they were planning on heading to portland kind of early but my hair lady has tues/wed off so I asked them to come over thurs morning so I could go get my hair done.  It was so nice to have someone else take care of me for a couple of hours.  I figured that I would try to only worry about the things I CAN control.  My hair I can control.  Thanks to his family for that extra time!

David was up in the chair wednesdsay and thursday (more on that in a bit) and we tried the ace bandages around his ankles/feet/calves and it seemed to have slowed down the swelling a bit.  The only real drawback has been that since I have to do it tight enough to compress his legs enough to keep the swelling down then his legs look a little like mummy legs for a little while.  It's better than the massive swelling he was getting before although after 2 days up it's pretty swollen again.  I guess we'll take a couple days out of the chair with his feet elevated in bed. 

Thursday Dave was in the chair for chemo.  It went pretty smooth for the most part.  The ramp was fantastic and easy.  We said we only needed one person to help move him and when the driver saw his name he decided to get another person because he remembered the steps and he was really excited to see the ramp.  They picked us up an hour early because they had a tight schedule but we ate in the cafeteria and I think it was really a morale boost for both of us.  Just like our normal lunch dates we used to have.  Of course we eat all our meals together anyway but out at a "restaurant" just feels more normal somehow.   The treatment was easy, only one poke, his blood pressure is actually a little more "normal" and was 70 over 120 which was the same bp the nurse got at home today.  We feel like that's an improvement over the 60 over 100 he WAS getting.  Things are looking good for now.  We talked to the dr about getting another MRI and whether he would recommend that.  He basically said that eventually yes he wants to do that, he doesn't really have a timeline in mind but that as long as David isn't getting worse he feels confident in saying, "your scan looks good" without even having  a scan.  Dr also reduced the steroid dose and by the time we go back in 2 weeks Dave will have 2 mg twice a day.  Step in the right direction. 

When we were done it took transport almost an hour to come get us.  That part sucked.  if only Dave could transfer to the car, transport would be so much easier.  Maybe someday... (pipe dream or something to strive for?)  Today he's pretty tired, like usual, after being up in the chair and chemo.  It's a hang out day.  Last night I slept so well, I must have been really tired.  I fell asleep at the other end of the bed while trying to type up a blog post.  The TV was on, the lamp was on, I had an extra blanket cocooned around me.... Dave woke up and said it took a couple minutes to actually wake me up to get me to turn off the TV.  I fell back to sleep before even getting the lamp off or turning around in bed.  At 4 when my alarm went off to give him meds I woke right up, got up and took care of everything and was all confused about how the tv was off but the lamp was still on.  I didn't remember anything about waking up! Ahhh sleep.  Then we slept in until 9. It was fantastic!  I guess we both had a busy week. 

Last night when we got home from the dr I went to a PTO meeting at school.  It felt good to do something "normal" although there were a lot of volunteer opportunities coming up that I really wanted to volunteer for every one of and restrained myself.  I'm learning my limits.  I WANT to do everything but I know I'm pretty much at capacity.  They were also planning the 8th grade festivities, Owen is a 7th grader but I'm glad to know what we have in store for next year and one of the things they're planning is the dance which is right up my alley when it comes to decorating and such.  I might have to get someone to hang out with Dave while I do some of that even though it's not for my kid it's still for the school and I love being crafty!
While I was gone Owen got to spend some time with his Dad and I heard that even though they didn't spend the whole time chatting they got some good nerdy father/son time in.  It's important for Owen to have that, not only because David is sick but because Owen is 13 and it's good for him to have that positive male influence. 

Oh, so Dave's mom is going through her journals and writing biographies for her kids with stories about their lives from when they were born until they got married.  She gave us the birth to ten portion of that biography and while we haven't read the whole thing yet Dave and I were giggling reading some of the little kid stories and we thought some of them would be fun to share so I'll occasionally add one to the blog.These are as told by his mother.

"We took a family vacation in our Mobile Traveler that summer and stopped one night at a rest area in eastern Idaho that had a cafe just down the road a bit.  We all piled out of the camper, and David, 4, told me he saw something flash in the sky.  I told him it was a sign on front of the cafe, but no , he insisted it was up in the clouds. Again, I explained it as the revolving sign on the cafe, and I left. David then turned to Chris (his brother, who later  told his mom), and said, "Mom doesn't know anything about space ships."

Wednesday, March 14, 2012

Cat Naps and Nearly Retro Suit Jackets

Saturday my Dad and brother finished most of the ramp.  There's still a little 3 or so inch drop at the bottom, the last section of railing and the non-skid surface that needs to be finished, but I'm not worried about it. It's been SO rainy and windy and snowy...ew  It's really really nice and we're very happy with it.  I pushed my brother up and down it in the wheelchair (HA!) to test it out, he probably outweighs David by about 50 or 60 lbs at this point so we figured if I can maneuver Jaeger I could handle Dave in the chair no problem. Of course it's been pouring rain (and snow) since then so it's not quite done but the 3 inch drop is much easier and safer than the two step drop off.  Now if the weather would get nicer Dave could go outside!

Monday was my Nana's 85th birthday.  She got a little cake and brought it over when Owen got home from school and we had a piece of cake with her.  Who can say no to afternoon cake?!  This coming weekend family is coming down for a birthday dinner at my Nana's house and they're going to snag Owen to go over there as well then people will either filter over for a visit or if David is up for it we'll just invite everyone over for dessert.  Since he has chemo tomorrow and it's the first time he's getting two doses at two week intervals we're not sure how he'll respond so we're playing it by ear.  We like having visitors even though our house isn't big but Dave gets tired after a while.  It's good to push his limits a little without overdoing it.  It's a fine line.

Last thursday for Owen's band concert he got dressed up in some pin stripe pants, shiny black (uncomfortable) shoes, white shirt and tie with a suit jacket we got for Dave at goodwill about 17 years ago for a Frankenstein halloween costume.  80s style with big shoulder pads and everything!  O decided that he would wear it to school on monday and then for some reason he wore it again today.  It's cute but if he wants to dress up like that I'd be happy to get him actual dress up clothes that fit him rather than the oversized, old fashioned suit jacket.  It's not quite retro yet!  I don't want to discourage his desire to look sharp.  O also finished The Man in the Iron Mask.  Finally!  He has an orthodontist appointment this afternoon. Hopefully his mouth doesn't get too sore.  It's nice to have straight teeth but getting there isn't as fun.

Yesterday the occupational therapist came out to visit.  She said David is her first hospice patient, I guess this is pretty unusual.  She said that she feels like she wouldn't be doing her job if she gave him a bunch of exercises to do that would tire him out and that's probably what physical therapy would do so we made a good choice to not go with PT.  Instead of giving him specific exercises she said she wants him to do activities that tax his abilities but that also enrich his time/experience.  Maybe try playing a computer game with Owen that doesn't require speed but that encourages movements he knew how to do well (type and mouse use) and that shouldn't be hard for him to relearn.  Or things like reading because he has to hold the book and turn pages so he practices fine motor skills too.  That way if he gets tired it's because he's been doing something he enjoys and not extraneous exercise.

Yesterday was busy.  After the OT was here I had to go to a dr's appointment (just a checkup).  I was trying to clean up and get stuff done and I hadn't slept well the night before.  Rose swooped in and saved the day.  She finished tidying up for me and stayed here while I was gone so I didn't have to worry about Dave being alone.  My appointment lasted FOREVER because my dr didn't know what was going on at home so she asked me a million questions.  My blood pressure was high, can't imagine why.  LOL She did take a look at some test results I got from a life insurance physical I had a few months ago and she was impressed with the results.  All my levels are good, cholesterol is good and all that too so that eased my mind a bit.  She told me if I need anything like sleeping pills to give her a call.  sometimes I wish I could take her up on that but I have to be able to wake up in the middle of the night if needed so the most I've done is valerian root.  I don't always have insomnia and honestly I've always battled with insomnia in some regard but last night it took me a while to fall asleep and then this morning I've gotten up to get things done then gone right back to sleep for little cat naps.  Yay cat naps!

Last night David's parents and sister, brother-in-law and kids from AZ came to town for a visit.  They stayed for a little while last night and will be back this afternoon.  It's good to visit with them and it's good for David to see his family.  Today after Owen's ortho appointment I think I'm going to swing by and bring his niece over too.  Family night!

Olive has moved her spot of choice from laying by Dave's legs up to laying ON his pillow.. like a hat.  Cat hat.  It's really adorable. She's the sweetest little thing.  It actually makes me a little nervous when she hovers over him like that because they say cats have a sense about things but by all accounts he's as healthy as someone can be when they have an illness like this. 

Tomorrow his appointment is at 2:30 but we'll get picked up at 1:00 because the transport bus isn't available later which means we'll end up at his appointment an hour early.  We decided to make a date of it and go to the hospital cafeteria and have a late lunch.  A DATE! YAY!  Luckily the hospital is gorgeous with a restaurant atmosphere in the cafeteria and the dr's office is in the building adjacent to the hospital so it's not far. Also we're going to ask the dr about scaling back on the steroids and when we can expect that he'll get another MRI.  We're not sure if they will even do another one unless he starts getting worse again but it never hurts to ask. 

Saturday, March 10, 2012


So remember last time when I said I felt like I don't get much accomplished?  Yeah... I may not actually have much forward momentum but I DO get a lot done that kind of keeps us in the moment without getting buried in stuff. 

Rose came over and helped clean the fridge this week. Thanks, Rose! We got rid of (I'm not kidding) something like nine pickle jars.  They were mostly different like dill and sweet and big and little and pre-sliced and relish.  The scary thing is that they were all expired and I know I've cleaned the fridge since then.  I probably figured pickles never go bad.  I really have no idea how that accumulation happened but it's amazing how much room you end up with when you get rid of all that.   That night Betsy's parents brought dinner and her dad rescued me from the pile of glass jars.  Thanks, Big Dog! I ran to Costco yesterday and I asked Dave if he wanted me to get anything specific.  He said, "Probably we need a big jar of pickles"  har har, funny guy.

Tuesday night Owen had a choir concert and Thursday night a band concert. Both went well, I love that I can pick his voice out in the choir since there are only 6 boys and in band he's first chair clarinet so I can always see him.  Tim came over both nights to hang out with Dave and we came home to the boys watching Basketball.  Cute boy stuff. We haven't watched basketball in a long time but it's probably good for Dave to get his blood pumping.  Watching sports gives you a good cardio workout, right? ;)  Dave was up in the chair both nights and we noticed that now both his feet swell when he's up, not just the left one.  It takes a little longer to go down now, in fact it's saturday and they are still a little swollen but not as bad.  The nurse thinks that's probably from the chemo. 

Last night my dad came over to start working on the ramp.  He got the first run of it framed out mostly and then came over today to finish.  Figures that yesterday was beautiful and today it's rainy.  Yay Oregon.  So last night I had my dad show me where in the flower bed I needed to dig stuff up because he has to build over it.  Now is probably not the ideal time to move bulbs that just bloomed but I did it and we'll see if they survive the move.  It figures that's the one spot in the yard that had the most plant material.  We had one plant there that has been dubbed "the squishy plant" that is actually 3 plants growing together (ice plant, stone crop and blue star creeper) plus some unauthorized clover here and there.  I also had to move my mini daisies, some newly planted alliums, a few bunches of crocuses and some pinks.  Hopefully some of it will come back.  On the bright side with so many creeping plants there were a lot of weeds in the middle of it all that went right into the yard debris container.  Normally it's hard to get them out of there. My body is a little sore today from doing all that last night but I'm glad it got done.  I think I needed a little manual labor, gets the stress out.

Owen is busy reading "The Man in the Iron Mask" for a project and since he downloaded it on the Kindle he didn't realize just how big the book is. (kindle doesn't show page numbers)  OOPS!  So he's been doing a lot of reading lately just to catch up.  He's also going to read "The Count of Monte Cristo" for this project (on Alexandre Dumas) so he'll be busy for a while.  At least he enjoys reading and he's very fast.  I've always considered myself a fast reader but Dave is faster than I am... and Owen's faster than both of us!  I guess instead of taking after one or the other of us he got my skills x dave's skills.  Lucky kid.

Dave is doing well.  He's been trying to practice his mobility and having the massage lady come in helps with that.  Next week he starts occupational therapy and they should be able to help him even further.  We're holding off on physical therapy right now until he gets a little stronger.  I know it seems silly because PT could probably help him get stronger but since he feels that motor skills are more important to start and he gets worn out if he does too much we're going to focus on one then the other.  He also has chemo again this thursday.  He'll actually be able to use the ramp so it will be much easier to get him out of the house.  Yay for less stress! 

Ok, lots to do today, I'll try to write more often, this week just kind of got away from me!

Tuesday, March 6, 2012

Snow in March?

Here we thought it was strange to have snow at the end of February and then this morning we woke up to a light dusting of snow on the valley floor again.  How odd.  This weekend it's supposed to be up to 60 degrees, this weather is almost as crazy as we are!

I feel like this weekend would be a great weekend to build a ramp. Probably the universe is trying to tell me something like, "Make a decision already" and I guess I should listen.  It's so hard to decide what the best thing to do would be!  We're leaning towards building one instead of doing a temporary ramp since, at least for now, he'll be going to chemo every other week for a while.  It would be much easier to get him in and out of the house and as the weather improves we can go on walks and *gasp* see the neighborhood!  We're living on the wild side with dreams of leaving the house!  ;)

David's birthday was really nice.  Totally stressful for me but I think it went well and he enjoyed seeing family and friends.  As long as I can keep the stress away from him I think it's successful.  He's never really been a social butterfly but he appreciates the time he has with people more now. He's fine but I'm still recovering from having so many people over at the same time and all the little stresses that go with it.  The funny thing is that there really wasn't a ton to stress about and people were helping me but it took a good supportive hug from my brother to get me to calm down.  He's pretty amazing and I'm glad he's been around so much.  Sometimes siblings get you from a different place than other people.  Plus, he and his fiance bring their beautiful little girl (2 months old) with them so I get my baby fix!  She's gorgeous and she's always good for a little smile and cuddle and she coos when I whisper to her.. awww.  She's right on the cusp of laughing, I can't wait. Even her angry face is great!  She's good for my spirit, and Dave's!  I held her on his lap so he could "hold" her and make silly faces at her and get her to smile.  He's such a baby guy, I'm glad he gets chances to do things like that.

Tonight Tim is coming over to have some guy time with Dave while Owen and go to his choir concert.  Thursday he has a band concert and then monday (the 12th) is my Nana's 85th birthday and then Dave's parents and sister et al from Lake Havasu are coming up to visit during their spring break.  Our niece migh be staying with us for a little while as she navigates some housing issues (ah college!) and I'm thinking that even though we don't have a ton of room we do have a couch and it would always be nice to have another set of hands around here occasionally.  Plus we just adore her.   She and Owen can do homework together!  ha!

Speaking of Owen he's starting to show more signs of... stress?  I don't know if that's the right word or not but we've been hoping his behavior is just part of growing up but it's starting to be a little bit more than that so we're trying to help him navigate it before it becomes too much of an issue.  Our goal is to help him through everything the best we can.  Yesterday we had a pretty big meltdown (as a family) and cried it out a bit then today things are much better.  I guess as long as we keep having positive days we'll count our blessings and have faith that our path is headed the right direction.

I've been feeling like I'm not getting a lot done lately.  I keep making myself these lists of things I want to accomplish the next day and then I barely make a dent in my list. I'll admit that my lists can be a bit... over enthusiastic... then I get depressed when I don't feel like I'm doing enough.  So today I decided to write down everything I do because maybe if I can see what I'm doing, even the little things, it will make me feel like I accomplished something.  So like... I don't really feel bad about it anymore.  hahahahaha  Sometimes it just takes a different perspective to see the reality of things.   Sure there are still things that haven't gotten done, important things, like taxes (doh!) Actually at the top of my list of things to do is to finalize our Wills and do our taxes. heh.  It seems fitting right?  Nothing is certain, except death and taxes?

Friday, March 2, 2012

39th Birthday Eve

Dave's doing pretty well today, he's just tired as can be expected.  His color is still good and he's stayed in bed today since he'll likely be up for a while tomorrow for his birthday.  YAY! BIRTHDAY!

Not a ton to report except that we're just really beyond grateful for the care and love we're receiving from everyone.  From our friends and family and dave's work and my dad's work and our son's school.  It's really been overwhelming (in a good way) and we just can't say thank you enough. 

We're still getting dinners brought to us for a few more days.  I think I've cooked twice in the 38 days we've been home.  I don't remember if I mentioned it but tomorrow he requested party potatoes with dinner.  My Nana makes a mean party potato recipe (it's kind of like potatoes au gratin only... party-er..) We're looking forward to a day of lots of family and being up in the chair and getting to enjoy David's company. 

Luckily this type of chemo (even both types together) don't make him sick to his stomach and won't make him lose his hair (more than normal).  He still takes an anti-nausea pill with it but so far it hasn't given him even a little bit of queasiness.  Mostly it just makes him tired which is to be expected.  The Dr actually said this combo of chemo meds is a little bit "off the reservation" as he put it.  It's not exactly typical but his cancer isn't typical either.  They did a clinical trial but the results haven't been published yet, they just know enough to know that it's "safe" to give them together but not necessarily what the long term outlook is with that combo of drugs.  I'm sure eventually we'll find out.

Oh, and a correction from yesterday.  I said they mentioned they would do a scan 4-6 weeks after radiation.  I meant 4-6 months!  details details...

We hope everyone has a great weekend!

Sunshine and Chemo

Transport went fairly well today.   It was a little tricky getting him down the steps, they should have taken him down backwards. It actually didn't look that bad from inside the house but he told me later that he lurched forward and good thing he had a seat belt on!  ACK!  I told him I wish he hadn't actually told me about that part.  Getting him back in the house, which was the part we were really worried about, was the easy part.  The guy pretty much did it alone and the 2nd person just spotted him.  I was impressed.  He didn't even go right to bed when he got home.  In total he was in the chair about 5 hours again and when he got back into bed he didn't fall asleep right away, but did eventually take a nap.  I was just happy that the sun was out when he got outside so he got a few seconds of sun on his face.  It was sprinkling on the way home then it stopped until we got him inside and then it started raining pretty good.  GOOD TIMING! 

Chemo went as well as could be expected.  I also talked to the dr about the seizures being a potential side effect and he said he really doubts that David's seizures were from the avastin and he thinks they had everything to do with the way he was moved and that he wasn't very strong at that time.  That eased our minds a little.  The infusion took 90 minutes the first time but since he had no reactions they shortened the time to 30 minutes.  Not bad!  I had just enough time to get us lunch and for us to eat it then he was done and we had to wait another half hour for the transport to come back... had we known that we would have had transport notified sooner!  Oh well, one wall of the waiting room is a giant window that looks out on the parking lot and the hills behind it so we got a good scenic view... and some people watching while we waited.  Ooh and a puzzle. I'm a sucker for a puzzle.

Dr wants to start doing the chemo every 2 weeks so we got another appointment set up already.  Not sure when/if they'll do another MRI but they originally said it would be 4-6 weeks after radiation.  Since radiation lasted 2 days I imagine that time-frame went down the drain.  We're not TOO worried about it but it's in the back of our minds.

The Dr's care manager mentioned that it might be time for David to move off of hospice onto home health so he can get more physical therapy and occupational therapy.  We were both super apprehensive about that and had a lot of questions like will they have to swap equipment out again and will they change nurses and how will meds be covered.  Right now they get delivered, for home health I'd have to pick them up at the pharmacy which is just one more trip to the store I'd rather not have to make.  It's hard to get out of the house sometimes.  Saves on gas money though. ;)  She decided it would be best to call hospice and talk to our nurse.  She basically told them she doesn't think that's a good idea and that they'll make accommodations to get PT/OT in to support his needs.  We're glad his nurse went to bat for him because he doesn't feel like it's a good idea to go off hospice just yet.

Mostly they were just REALLY surprised to see him doing so well.  Keep in mind the last time they saw him he couldn't move his right arm at all and his left hand and arm were barely mobile.  He couldn't be upright in the chair at all and then they heard about his downhill slide when he went home.  David and I were talking about it earlier comparing it to how we see it like a video, gradual.  Especially to David he doesn't feel like he's made much progress at all even though I point out to him every day how far he's come..  The Dr sees it like snapshots and that makes it look like a much more dramatic change. 
Hopefully David tolerates this chemo well and we can continue to move forward.  As always I'll keep you all updated.  Thanks for going on this journey with us.  <3