Hi All,
There's not really a nice way to say this so I'm not even going to try. David's chutes and ladders game hit a big old chute this week. Ok, maybe I'll try a little. ;) Last time I posted I mentioned that he wasn't eating much and was a little swollen and under the weather. On the bright side his sniffles seem to be gone, maybe because the fog has lifted (outside anyway) and the sun is shining. Everything else has gotten worse. The edema hasn't reduced, he has a hard time waking up and Thursday afternoon he started refusing food entirely. There's a part of me that kind of waited to see if he'd turn around, like he has a few times before, but this time it's definitely different.
At this point he's pretty much sleeping and I'm giving him pain meds as needed to keep him as comfortable as possible. He wakes up on occasion and mumbles a few things then falls back to sleep. He's confused sometimes and mumbles so you can't really understand what he's saying except occasionally he blurts out something obvious. Except when we tell him we love him, he always responds in kind. It's the only thing he responds to without fail. Earlier I was sitting near him, playing with his phone (he gets a lot of text alerts for things, he's funny) and he woke up, looked up and said "You're a nice girl" then fell back to sleep. I don't know how I got so lucky that even now he's still as sweet as can be and has rarely been anything but. Last night he had a silly moment with Owen as Owen was saying goodnight. It's those things we'll remember most.
I told Owen that things weren't looking good on thursday and he replied, "Worst birthday present ever" Seriously. My birthday is next friday, Owen's is Feb 17th and Dave's is March 3rd. I told him it sucks for us but I think it's exactly what Dave wants for his birthday.
I asked the nurse what we were looking at for a time frame here. She got out the reference book they give you when you first get admitted to hospice and there are a few lists of things to look for and what it means as far as how far from death someone is. Handy list to have I suppose. We're seeing most of the things in the 1-3 weeks range but maybe little touches of things in the 1-2 days range. Her best guess was about a week.
Owen has finals next week. What's your first finals in high school without a little bit of extra stress? My heart breaks for what he has to endure. He's amazing, truly. I keep forgetting to notify his principal or counselor or teachers of the change. Mom fail. I'll take care of it before monday, I've just been in a bit of a fog. I guess the fog moved from outside to in my brain.
I told Owen I'm a little scattered and stressed but that I'm trying to make sure everything he needs is taken care of and he smiled his "duh, mom" smile. I said, "not like you can't tell when I'm stressed." He said something like "it would be more unique for you to be not stressed." And we both laughed. Laughing is good. My sis-in-law, Ricki, said "Can you imagine a life without stress? Being able to relax?" I told her I'm not even sure what those words mean right now. I know those days are coming and I don't know when that will be able to happen but right now it's enough to know that some time in the future things will be easier. I keep telling myself so I remember.
One blessing in all of this is that we've had 2 years to say all the things we want to say. Nothing is left unspoken so even though this caught us a little bit off guard with how rapidly he declined I guess in a way we're as prepared as we could hope to be.
Saturday, January 25, 2014
Monday, January 20, 2014
It's 2014? When Did That Happen?
Hi All,
It seems we pretty much lost all of 2013. I keep thinking 2012 just happened and it can't possibly be 2014, yet here it is. Things are pretty quiet around here and we're trying to keep it that way. David hasn't been feeling great lately but we're not yet sure if it's advancement of the tumor or just an anomaly.
Christmas and New Years came and went without too much foofarah. Dave got up in the chair a couple times and all seemed mostly ok but afterwards his legs started swelling. A few days later one of them sprung a leak. It's called weeping edema and it's fairly common so there was no real panic, it's just something we have to keep an eye on. That stopped after a few days and the swelling went down then unexpectedly and without obvious provocation the swelling came back. It's in his whole body. The steroids he's been on for months could be making that worse so over the last couple of weeks we've done some adjusting of meds. Getting off the steroids, increasing the diuretic, increasing the morphine to help with the decreased steroid. etc etc.. He's had a few really bad migraines and now has a bit of a sniffle and an occasional cough. We're not sure if he's sick or if it's the terrible weather inversions we've been having in the valley. He thinks he may have a touch of a cold. I hope not seeing as it was this same time last year that he and Owen got really sick and they were worried about Dave getting pneumonia. We don't need a repeat of that.
Basically the hospice team feels that if the change in meds doesn't decrease his edema (fluid retention) they will consider it a progression of the disease. We can't really say that we would consider it anything else at this point. He's been constantly tired and his appetite has gotten much smaller (probably thanks to not being on the steroid anymore) and we're just trying to keep him as comfortable as possible.
I don't mean to only post when things seem to be changing but it's kind of all I have energy for these days. That sounds really bad, I don't mean it to sound all Debbie Downer. I'm not. I'm just focused on the things I need to take care of and not much else of anything.
Thankfully we got the insurance stuff all sorted out for the time being, hospice sorted out until he goes on medicare, our taxes are almost done (because I don't want them lingering over me), the housekeepers came in and did a deep clean of things (thanks to some awesome friends and me not using a gift cert until a year later and the owner of the company being nice and honoring it. Oops) and Owen is being a giant help, as usual. Even in those little teenagery moments he's still helpful... he just sighs about having to be that way. I really couldn't ask for more.
Hope everyone had a happy new year and I'll update when/if we find out more!
It seems we pretty much lost all of 2013. I keep thinking 2012 just happened and it can't possibly be 2014, yet here it is. Things are pretty quiet around here and we're trying to keep it that way. David hasn't been feeling great lately but we're not yet sure if it's advancement of the tumor or just an anomaly.
Christmas and New Years came and went without too much foofarah. Dave got up in the chair a couple times and all seemed mostly ok but afterwards his legs started swelling. A few days later one of them sprung a leak. It's called weeping edema and it's fairly common so there was no real panic, it's just something we have to keep an eye on. That stopped after a few days and the swelling went down then unexpectedly and without obvious provocation the swelling came back. It's in his whole body. The steroids he's been on for months could be making that worse so over the last couple of weeks we've done some adjusting of meds. Getting off the steroids, increasing the diuretic, increasing the morphine to help with the decreased steroid. etc etc.. He's had a few really bad migraines and now has a bit of a sniffle and an occasional cough. We're not sure if he's sick or if it's the terrible weather inversions we've been having in the valley. He thinks he may have a touch of a cold. I hope not seeing as it was this same time last year that he and Owen got really sick and they were worried about Dave getting pneumonia. We don't need a repeat of that.
Basically the hospice team feels that if the change in meds doesn't decrease his edema (fluid retention) they will consider it a progression of the disease. We can't really say that we would consider it anything else at this point. He's been constantly tired and his appetite has gotten much smaller (probably thanks to not being on the steroid anymore) and we're just trying to keep him as comfortable as possible.
I don't mean to only post when things seem to be changing but it's kind of all I have energy for these days. That sounds really bad, I don't mean it to sound all Debbie Downer. I'm not. I'm just focused on the things I need to take care of and not much else of anything.
Thankfully we got the insurance stuff all sorted out for the time being, hospice sorted out until he goes on medicare, our taxes are almost done (because I don't want them lingering over me), the housekeepers came in and did a deep clean of things (thanks to some awesome friends and me not using a gift cert until a year later and the owner of the company being nice and honoring it. Oops) and Owen is being a giant help, as usual. Even in those little teenagery moments he's still helpful... he just sighs about having to be that way. I really couldn't ask for more.
Hope everyone had a happy new year and I'll update when/if we find out more!
Friday, November 15, 2013
Thankfully Unnecessary Drama
Things have been going relatively "same old same old" up until a couple weeks ago. I'll share the greatly abbreviated version of the rollercoaster ride. Just so there's no suspense (where's the fun in that?) things are ok and back to the status quo for the time being.
I knew that COBRA would be expiring at the end of November but I misunderstood the extension process and didn't put in the paperwork at the appropriate time. The appropriate time would have been within 60 days of the SSA saying he was disabled. That was soooo long ago. I talked to the insurance and she said to get her some paperwork and she would submit it anyway. I got her the only paperwork I had but that wasn't right so I had to call social security (not an easy feat) and they said that's the only paperwork they got but they could send me a letter with the additional info. I was shocked when I got the letter the next day, thank heavens for the local SS office, and emailed it to the insurance later that day. I sent it on a friday afternoon and monday morning when I woke up I had an email saying the extension had been approved. So fast. GIANT WHEW!
There's still a chance that we'll be changing plans because of the ACA stuff becoming available but we really have to just wait that out. The plan he has now will be changing in January because the company is changing all their plans so we have to wait for paperwork and find out if the cobra premium is changing and if another plan would better suit us. This ACA stuff, while making it easier for some, is really adding another level of complexity to an already complex situation. We're not really stressed about it because there isn't anything we can do so we're playing it by ear and making backup plans for a variety of situations.
The day we got the good news about the extension the hospice nurse came to visit. She was talking about his re-certification and I asked, "Are you saying you're worried he won't be eligible for hospice?" She said that yes, that's what they were worried about. When the doctor came out to visit he explained that if David were on Medicare he's not sure if he would qualify under their guidelines because he's not declining fast enough... I... what? Oh and he's not improving so he's not technically not eligible for home health either. Stress. But private insurance has been covering hospice, not medicare. The doctor said as long as insurance was covering it it would be ok. I asked if he was worried about the re-cert this time and he said no. The next day the nurse and social worker came out to tell us that it looked like he was getting discharged the following thursday because the Dr said he wasn't eligible anymore. That's not what he said to us... Confusion and stress. The next day they said they talked to insurance and they said they would likely be covering it but they had to review the case. That was friday. Wednesday (2 days ago, 1 day before he was to be discharged) they called to say that they had written notice from insurance saying they'd cover it.
This insurance has been such a blessing to us. They saved the day with both issues and how quickly they responded. We honestly don't know what we'd do without them.
So there's our fun temporary drama. Things are back to normal so to speak. I'll fill in more details later and maybe post fun stuff. For now I'm just tired. :)
I knew that COBRA would be expiring at the end of November but I misunderstood the extension process and didn't put in the paperwork at the appropriate time. The appropriate time would have been within 60 days of the SSA saying he was disabled. That was soooo long ago. I talked to the insurance and she said to get her some paperwork and she would submit it anyway. I got her the only paperwork I had but that wasn't right so I had to call social security (not an easy feat) and they said that's the only paperwork they got but they could send me a letter with the additional info. I was shocked when I got the letter the next day, thank heavens for the local SS office, and emailed it to the insurance later that day. I sent it on a friday afternoon and monday morning when I woke up I had an email saying the extension had been approved. So fast. GIANT WHEW!
There's still a chance that we'll be changing plans because of the ACA stuff becoming available but we really have to just wait that out. The plan he has now will be changing in January because the company is changing all their plans so we have to wait for paperwork and find out if the cobra premium is changing and if another plan would better suit us. This ACA stuff, while making it easier for some, is really adding another level of complexity to an already complex situation. We're not really stressed about it because there isn't anything we can do so we're playing it by ear and making backup plans for a variety of situations.
The day we got the good news about the extension the hospice nurse came to visit. She was talking about his re-certification and I asked, "Are you saying you're worried he won't be eligible for hospice?" She said that yes, that's what they were worried about. When the doctor came out to visit he explained that if David were on Medicare he's not sure if he would qualify under their guidelines because he's not declining fast enough... I... what? Oh and he's not improving so he's not technically not eligible for home health either. Stress. But private insurance has been covering hospice, not medicare. The doctor said as long as insurance was covering it it would be ok. I asked if he was worried about the re-cert this time and he said no. The next day the nurse and social worker came out to tell us that it looked like he was getting discharged the following thursday because the Dr said he wasn't eligible anymore. That's not what he said to us... Confusion and stress. The next day they said they talked to insurance and they said they would likely be covering it but they had to review the case. That was friday. Wednesday (2 days ago, 1 day before he was to be discharged) they called to say that they had written notice from insurance saying they'd cover it.
This insurance has been such a blessing to us. They saved the day with both issues and how quickly they responded. We honestly don't know what we'd do without them.
So there's our fun temporary drama. Things are back to normal so to speak. I'll fill in more details later and maybe post fun stuff. For now I'm just tired. :)
Wednesday, September 4, 2013
First Day of High School...
Summer? What Summer?
I know it's been a while, I don't have an excuse except that focusing on one thing is hard. Harder than it should be sometimes. Occasionally things get a little beyond my grasp and this blog is sometimes one of those things.
So a quick update: David is doing well. Much better than we anticipated. He has lost a little additional control of his right hand and over the last few days we've noticed that his left hand is starting to get a little.... floppy? Not an accurate word for it but we notice that he's holding it a little more like he holds his right hand when he's not thinking about it. It curls up on him and his ring finger occasionally droops. He still has feeling although there is a more pronounced numbness in the tips of his fingers and sometimes the nerves in his palm spaz out. Spaz... heh. it's totally a medical term. ;) So far he's still agile enough to use his phone but he tires quickly.
My dad and stepmom rented us a wheelchair van for a few days in early august. The first day went to see Despicable Me 2, cute and lighthearted which is just what we needed. The next day we went to Florence then drove up to Newport and back home through Salem to see my mom's new cat and because David NEEDED Popeye's. We don't have a Popeye's in Eugene. The third day we got going early (ok noon, don't judge us) and went out to the Scandinavian Festival then I returned the van. It was a VERY busy few days but it was like our summer vacation! We got to leave the house!! We were all completely wiped out all weekend after that. It was fun but it was a lot of work and we're very thankful we were able to do that.
So not much else has been going on. Same old same old mostly. Owen started high school today. I agonized over a letter I wrote to the principal(s), his counselor and his teachers letting them know what's going on at home. It would be good for me to meet his teachers but meeting 9 teachers and 4 administrators and his counselor and talking to all of them about it seems daunting. For the same reasons I write this blog (to not have to repeat myself) I just wrote them a letter. I'll meet them eventually but for now typing is good.
This morning before he left I gave him a big hug and we had this little exchange:
O: "You're totally gonna cry"
Me: "No I'm not"
O: "Yes you are."
Me: "No I'm not, don't be a brat"
O: "You're going to wait until I leave, then you're going to cry"
Me: "I'm going to cry because you're such a brat"
Then we giggled.
I may or may not have gotten a little misty about him leaving. I may or may not be a little misty right now. He loves it when I cry because he's growing up. I think it makes him feel accomplished or something. He's not really growing up until mom cries about it. HA!
He is doing marching band and had two weeks of camp before school started. This weekend he got to play with the University of Oregon's marching band. They let alumni and high schoolers play with them during the first game because not all the college students have arrived to fill up the band. He got a t-shirt and got to play in the stands and on the field during half time. SO EXCITING! He found it funny that since the game was against Nicholls State and the Ducks were favored by 56 points they learned the Oregon Fight Song and were told, "We play this every time we score.... so we'll probably be playing this a lot." Sometimes he gets stressed in un-familiar or new situations until he gets comfortable so we were a tiny bit concerned that he'd be overwhelmed but he had a blast. He was there from 7 am - 5:30 pm and he was in such a good mood and had so much fun. Everything about it was great. We're thrilled he could participate in that and hope he continues with Marching Band all through high school.
I'll try to update more often but no promises. I'm hoping to pull out of this funk soon but I'm kind of operating at a base level right now and my motivation only amps up far enough to do what I HAVE to do and not much else. So until next time, no news is good news!
I know it's been a while, I don't have an excuse except that focusing on one thing is hard. Harder than it should be sometimes. Occasionally things get a little beyond my grasp and this blog is sometimes one of those things.
So a quick update: David is doing well. Much better than we anticipated. He has lost a little additional control of his right hand and over the last few days we've noticed that his left hand is starting to get a little.... floppy? Not an accurate word for it but we notice that he's holding it a little more like he holds his right hand when he's not thinking about it. It curls up on him and his ring finger occasionally droops. He still has feeling although there is a more pronounced numbness in the tips of his fingers and sometimes the nerves in his palm spaz out. Spaz... heh. it's totally a medical term. ;) So far he's still agile enough to use his phone but he tires quickly.
My dad and stepmom rented us a wheelchair van for a few days in early august. The first day went to see Despicable Me 2, cute and lighthearted which is just what we needed. The next day we went to Florence then drove up to Newport and back home through Salem to see my mom's new cat and because David NEEDED Popeye's. We don't have a Popeye's in Eugene. The third day we got going early (ok noon, don't judge us) and went out to the Scandinavian Festival then I returned the van. It was a VERY busy few days but it was like our summer vacation! We got to leave the house!! We were all completely wiped out all weekend after that. It was fun but it was a lot of work and we're very thankful we were able to do that.
So not much else has been going on. Same old same old mostly. Owen started high school today. I agonized over a letter I wrote to the principal(s), his counselor and his teachers letting them know what's going on at home. It would be good for me to meet his teachers but meeting 9 teachers and 4 administrators and his counselor and talking to all of them about it seems daunting. For the same reasons I write this blog (to not have to repeat myself) I just wrote them a letter. I'll meet them eventually but for now typing is good.
This morning before he left I gave him a big hug and we had this little exchange:
O: "You're totally gonna cry"
Me: "No I'm not"
O: "Yes you are."
Me: "No I'm not, don't be a brat"
O: "You're going to wait until I leave, then you're going to cry"
Me: "I'm going to cry because you're such a brat"
Then we giggled.
I may or may not have gotten a little misty about him leaving. I may or may not be a little misty right now. He loves it when I cry because he's growing up. I think it makes him feel accomplished or something. He's not really growing up until mom cries about it. HA!
He is doing marching band and had two weeks of camp before school started. This weekend he got to play with the University of Oregon's marching band. They let alumni and high schoolers play with them during the first game because not all the college students have arrived to fill up the band. He got a t-shirt and got to play in the stands and on the field during half time. SO EXCITING! He found it funny that since the game was against Nicholls State and the Ducks were favored by 56 points they learned the Oregon Fight Song and were told, "We play this every time we score.... so we'll probably be playing this a lot." Sometimes he gets stressed in un-familiar or new situations until he gets comfortable so we were a tiny bit concerned that he'd be overwhelmed but he had a blast. He was there from 7 am - 5:30 pm and he was in such a good mood and had so much fun. Everything about it was great. We're thrilled he could participate in that and hope he continues with Marching Band all through high school.
I'll try to update more often but no promises. I'm hoping to pull out of this funk soon but I'm kind of operating at a base level right now and my motivation only amps up far enough to do what I HAVE to do and not much else. So until next time, no news is good news!
Wednesday, July 17, 2013
Making Decisions
The last couple of weeks have felt very busy. We had a good 4th of July. I found the box of left over fireworks from last year and we picked out a few new ones. Owen got to light everything off while Dave and I sat back and watched. It was a nice family moment.
David decided to stop doing the Avastin treatments. His first missed appointment was July 3rd so the 4th was something of an Independence Day for him as well. Free from the medicines and free from the stress associated with making the decision. His whole demeanor changed after the decision was made. He's so at peace which in turn helps me be at peace. Last week he went in to have the central line removed since he won't be getting any more treatments. He had it for over a year and while it didn't hurt it was a low level irritation that he is THRILLED to be rid of. I got to watch them remove it which was super cool... I know... That's weird. I'm weird. Ha! David was amused by my amusement. He got no stitches and it's healing very well which we're happy to see. Thats a change from even a month ago when he was still on Avastin and the sore on his leg took over a month to heal. They found a clot in the central line when they removed it and advised him to start taking the blood thinner again but we let them know he won't be taking that anymore either.
Tomorrow he has an appointment with the oncologist, basically to make sure he's got all his T's crossed and such. Every healthcare professional we've talked to has been very supportive of this decision and that gives him some peace of mind as well. Deciding to stop the Avastin is something we've talked about off and on for the last year. Recently he took a little downhill slide and the dr started asking a lot of quality of life questions. It obviously had come up a lot more often lately. The dr is right, his quality of life has diminished. I think making the decision now felt right for both of us. Once that decision was made we discussed all his other meds. Most things are palliative but the Coumadin treats something so after heavily weighing the pros and cons we decided to stop that too.
The potential complications and side effects of being on them far outweigh the benefit at this point. The hospice manager had a lot of questions but after discussing it she felt we had more than adequately explored both sides and she supported our decision as well. It's nice for David that people haven't questioned him in a condescending way. I think he was worried about that but you'd have to blind not to see the impact this has had/is having on him.
David has spent countless hours trying to encourage me, build me up, prepare me for the windy and bumpy road this journey is taking us on. He says it makes him happy when Owen and I make plans for the future. Sometimes that is really difficult but if we can give him some peace of mind that's the least we can do. I'm grateful every day for how much love, patience and selflessness Dave shares with me and Owen. It would be so easy for him to be bitter or angry or depressed and he does his best to not burden us with that. It has helped me keep my chin up and I felt like it was important that he share that with Owen too so we had a long talk with him about stopping the meds and what that means. I wanted David to share those words of encouragement with Owen as well. To let him know what he wants for O's future and how he knows it will be hard but that Dave is excited for us to keep moving forward with our lives. That he wants to hear about our plans. D has always needed an adventure to look forward to, usually a vacation even if he planned it a year in advance. Now he's planning and preparing and looking forward to his next adventure.
Owen is doing remarkably well. He's staying moderately busy and planning for high school. We talk about everything regarding Dave's health very frankly with him and when he has concerns or questions he brings them up. He amazes me every day and I know that he and I will be ok.
So... What does this all mean? It means that the blood vessels have started growing again and the tumor will soon be getting "fed" again. How it will react is anyone's guess. We assume it will start growing more rapidly and his paralysis will progress and he will pass. That's really all we know. Stopping the Coumadin means he'll likely get blood clots. Those could kill him as well but really since that's the road he's on anyway we're not worried about that, worst cast scenario he has a stroke that doesn't kill him right away. It's a little out of the ordinary to not list "death" as your worst case scenario. Having a stroke isn't very likely but we tend to explore every known possibility when we make decisions.
I'm not going to sugar coat it. Staying upbeat is increasingly difficult. There are a lot of tears and anxiety but I am also comforted by the fact that those thoughts and feelings are normal and I'm not alone or unique in that process. David made this decision the Thursday before Jesse's birthday and that was a rough week for me but I am also acutely aware that life goes on for the rest of us and to spend all our time with an Eeyore cloud following us around is a waste of our precious resources.
This week our thoughts and prayers are with Tim and Rose's nephew, James Dahl, who is getting ready to go to UCLA for a hemispherectomy to treat a very rare disease. Those who are local may have read about him in the Register Guard or seen a story on KEZI news. We hope James' surgery goes as smoothly as possible and that he and his family are filled with patience and strength and hope for the future. I wish there was more we could do to help but please know our hearts are with you.
Please go here to learn more.
https://www.giveforward.com/fundraiser/5zn1/helpjamesfightepilepsyjointhejteamd
Friday, June 28, 2013
Summer!
Man it's been hot the last couple of days. We've got the air conditioner in the bedroom so it stays relatively comfortable for Dave which is nice.
Let's see where I left off. Oh the bed! We got them to return it. They took a little cut of it, 15% of the shipping cost which turned out to be something like $100. I called UPS to see if they were pulling my leg but nope... shipping really was that expensive. Oh well. Lesson learned and it makes for a funny story.
The 8th grade party was amazing! Chairing that committee wasn't my best choice as far as stress goes but it went off wonderfully. Along with all the parent volunteers that helped make it happen I called in my secret weapon, Ariana! That girl! I know she's just as uptight about things being "just so" as I am in some ways and when I gave her a job she took that thing over and did fantastic things with it. I don't know that I would have survived that night with my sanity intact without her.
A couple weeks later David ventured out with us on a non-dr's appointment trip to Owen's 8th grade graduation. It was just a quick trip down the street but it meant a lot to all of us. He got to see the band and choir (both of which Owen is in) perform one song each which is great since he wasn't able to see any of those performances live.
Owen is now done with middle school and on to High School. EEK! He finished off this year with a 3.86 GPA which is so fantastic, especially given everything that's going on at home. In the fall he will be doing Marching Band and Chess Club... what a nerd... don't know where he picked up the nerdiness from. *whistles* *snicker*
Let's see where I left off. Oh the bed! We got them to return it. They took a little cut of it, 15% of the shipping cost which turned out to be something like $100. I called UPS to see if they were pulling my leg but nope... shipping really was that expensive. Oh well. Lesson learned and it makes for a funny story.
The 8th grade party was amazing! Chairing that committee wasn't my best choice as far as stress goes but it went off wonderfully. Along with all the parent volunteers that helped make it happen I called in my secret weapon, Ariana! That girl! I know she's just as uptight about things being "just so" as I am in some ways and when I gave her a job she took that thing over and did fantastic things with it. I don't know that I would have survived that night with my sanity intact without her.
A couple weeks later David ventured out with us on a non-dr's appointment trip to Owen's 8th grade graduation. It was just a quick trip down the street but it meant a lot to all of us. He got to see the band and choir (both of which Owen is in) perform one song each which is great since he wasn't able to see any of those performances live.
Owen is now done with middle school and on to High School. EEK! He finished off this year with a 3.86 GPA which is so fantastic, especially given everything that's going on at home. In the fall he will be doing Marching Band and Chess Club... what a nerd... don't know where he picked up the nerdiness from. *whistles* *snicker*
Monday, May 27, 2013
Quarterly Blog Update -or- It's Been 2 Months? Oops.
Is it really almost the end of May? 2013 has been kind of a blur so far!
Owen is almost done with Middle School!! He has something like 11 days of school left. Everything until the end of the year is going to be really busy. He's got National Jr Honor Society meeting where he has to read something for the incoming NJHS students, he's got choir and band concerts, 8th grade party, field trip, 8th grade breakfast, marching band orientation, chess club meetings, 8th grade departure ceremony. He's at least 5'9" now and he's working on a little mustache, much to my chagrin. The 8th grade party is going to take up most of my time this next week. My mom is coming down to hang out with Dave on friday so I can be at school to decorate/chaperone/clean up. I'm sure Owen loves it. *snicker* He's really just psyched that I bought him a new suit for the party and I wouldn't let him wear it yet so it's been hanging in his closet, taunting him. It wasn't really necessary to get a suit but he loves to dress up and has multiple blazers and suit jackets from thrift stores so I figured this was worth the splurge. (plus jcp was having an amazing sale!) He's soon to be a high schooler. Heaven help us! ;)
Dave is doing ok. Not great but ok. We've swapped around his meds SOOOO much.. Last time I mentioned going on Neurontin and staying on the steroids. Well nix those things! He was getting so clumsy that he decided to go off it to figure out if it's the medication or the tumor pressing on things making it worse. It appears to be the tumor. On the bright side he doesn't have the tingling anymore... He can still move the right hand mostly but his fingers don't really go the way he wants. We joke that his hand has to be supervised because if he's not looking at it it kind of has a mind of it's own. His left hand has a tiny bit of numbness on the tips of his fingers but he still has full use of that hand thankfully.
He also went off the steroids for now because his getting such uncomfortable side effects. That could be contributing partially to how bad his hand has gotten. I don't know if I relayed that very well but yeah, it's bad.
The dr says things like "I think the avastin may be coming to the end of it's usefulness" and we don't really know what to make of that. They're going to keep him on it as long as he wants to be on it but we're to the point where being in the chair is a little more difficult and disorienting for him since his right side isn't as stable. OH! and he's got what we think is his first bedsore. Daddy's first bedsore... not really as fun as baby's firsts, right? It's on his calf and in a spot that doesn't REALLY make sense for a bedsore but I guess it's possible. It's either a bedsore or a tear in his skin which I guess probably came from the bed/pillows which I suppose qualifies it as a bedsore... technicalities. They put a skin colored kind of clear bandage over it that's supposed to stay on for a week to keep it from rubbing against things. The combination of the Avastin and the Steroids (which he's been off of for a couple of weeks) makes him unable to heal well, plus the coumadin which thins his blood and makes him bleed more than normal. The sore really isn't producing a scab which is not great for healing purposes. I hope this bandage she used does the trick.
His skin is very sensitive, he bruises very easily, his edema(swelling) is back in his feet and legs. He's just fragile. Thankfully he's not really in any pain, just occasional discomfort in his neck. he's thinking about going back on the steroids to try to alleviate some swelling in his spine and maybe get a little of the movement in the hand back but then he has to deal with all the other side effects again. It's kind of a toss up.
He's also on new sleeping meds and increased his morphine a bit. We (Owen and I) moved the bedroom around so Dave could have the little table on his left side to accommodate the hand situation and there isn't really much room in there now because of the way the room is laid out. (He's going to kill me for telling this story. Hi Honey, I love you!) We talked about getting rid of the queen bed and getting a daybed or something so we could move things over. So a few days later he showed me an email where he thought I had ordered a daybed and it was meant to be delivered soon. He thought I did it to surprise him. What he didn't realize is that no, that was his amazon account and I hadn't ordered something. We thought maybe it was coincidental spam because he swore he didn't even look at daybeds... then we investigated. About 2 hours after taking his sleeping meds he used his phone (which he can thankfully still manipulate) to look up daybeds on amazon. He found one he liked and he ordered it.... a $500 daybed... and there were 2 more in his cart! Thankfully he didn't order all three! So now we're waiting for the bed to arrive so I can get it shipped back and get a refund. He's not on Ambien but it's kind of like the crazy things you hear about people doing when they take Ambien. He was drugged up shopping. I had to remove the credit card information from his amazon account. He got cut off! Sweet of him to want to help out even in his altered state! At first I was irritated but now I think it's really funny. It's a good story in any case.
We're still thinking about bed arrangements, maybe I'll see if I can trade beds with Owen as he has a twin. I wouldn't mind having a daybed as a guest bed or something for the future but $500 for a bed without a mattress is just a little steep for what we need it for. I was thinking about giving the daybed to Owen once I was done with it but he's growing so fast that I figure I'll have to get him a full size bed before too long anyway.
As for me, I'm doing ok. Last year was more physically demanding I think but this year has been more emotionally demanding. I take every little thing to heart and get over-emotional when I don't really need to. HA! So... back to normal? ;) I'm taking my thyroid meds regularly finally and I've been having a bit of aphasia (I forget words or lose my train of thought mid-sentence). This happened before so I'm going to get my levels tested again because apparently too much thyroid hormone in your system can cause that. I'm not a fan of whatever is happening. Not like the memory loss could be stress related... heh. I try to do things for myself but none of it feels particularly rejuvenating.
We're thinking about trying to get Dave up in the chair and over to the school for Owen's 8th grade departure ceremony. It's only about 3/4 of a mile away with sidewalks the whole way, we could probably push him in the chair there if need be if the weather is nice. There are wheelchair accessible cabs... yes, but fresh air! We'll see how he's feeling in a couple of weeks. We have time to decide. I keep thinking that he likely won't see Owen graduate from high school so this might be a nice memory for Owen to have. I figure I'll be a mess if Dave does make it there but I'll be a mess if he doesn't so I'd rather him be there if at all possible.
I'll try to write more regularly so it's not a novel every time but no promises ;)
Owen is almost done with Middle School!! He has something like 11 days of school left. Everything until the end of the year is going to be really busy. He's got National Jr Honor Society meeting where he has to read something for the incoming NJHS students, he's got choir and band concerts, 8th grade party, field trip, 8th grade breakfast, marching band orientation, chess club meetings, 8th grade departure ceremony. He's at least 5'9" now and he's working on a little mustache, much to my chagrin. The 8th grade party is going to take up most of my time this next week. My mom is coming down to hang out with Dave on friday so I can be at school to decorate/chaperone/clean up. I'm sure Owen loves it. *snicker* He's really just psyched that I bought him a new suit for the party and I wouldn't let him wear it yet so it's been hanging in his closet, taunting him. It wasn't really necessary to get a suit but he loves to dress up and has multiple blazers and suit jackets from thrift stores so I figured this was worth the splurge. (plus jcp was having an amazing sale!) He's soon to be a high schooler. Heaven help us! ;)
Dave is doing ok. Not great but ok. We've swapped around his meds SOOOO much.. Last time I mentioned going on Neurontin and staying on the steroids. Well nix those things! He was getting so clumsy that he decided to go off it to figure out if it's the medication or the tumor pressing on things making it worse. It appears to be the tumor. On the bright side he doesn't have the tingling anymore... He can still move the right hand mostly but his fingers don't really go the way he wants. We joke that his hand has to be supervised because if he's not looking at it it kind of has a mind of it's own. His left hand has a tiny bit of numbness on the tips of his fingers but he still has full use of that hand thankfully.
He also went off the steroids for now because his getting such uncomfortable side effects. That could be contributing partially to how bad his hand has gotten. I don't know if I relayed that very well but yeah, it's bad.
The dr says things like "I think the avastin may be coming to the end of it's usefulness" and we don't really know what to make of that. They're going to keep him on it as long as he wants to be on it but we're to the point where being in the chair is a little more difficult and disorienting for him since his right side isn't as stable. OH! and he's got what we think is his first bedsore. Daddy's first bedsore... not really as fun as baby's firsts, right? It's on his calf and in a spot that doesn't REALLY make sense for a bedsore but I guess it's possible. It's either a bedsore or a tear in his skin which I guess probably came from the bed/pillows which I suppose qualifies it as a bedsore... technicalities. They put a skin colored kind of clear bandage over it that's supposed to stay on for a week to keep it from rubbing against things. The combination of the Avastin and the Steroids (which he's been off of for a couple of weeks) makes him unable to heal well, plus the coumadin which thins his blood and makes him bleed more than normal. The sore really isn't producing a scab which is not great for healing purposes. I hope this bandage she used does the trick.
His skin is very sensitive, he bruises very easily, his edema(swelling) is back in his feet and legs. He's just fragile. Thankfully he's not really in any pain, just occasional discomfort in his neck. he's thinking about going back on the steroids to try to alleviate some swelling in his spine and maybe get a little of the movement in the hand back but then he has to deal with all the other side effects again. It's kind of a toss up.
He's also on new sleeping meds and increased his morphine a bit. We (Owen and I) moved the bedroom around so Dave could have the little table on his left side to accommodate the hand situation and there isn't really much room in there now because of the way the room is laid out. (He's going to kill me for telling this story. Hi Honey, I love you!) We talked about getting rid of the queen bed and getting a daybed or something so we could move things over. So a few days later he showed me an email where he thought I had ordered a daybed and it was meant to be delivered soon. He thought I did it to surprise him. What he didn't realize is that no, that was his amazon account and I hadn't ordered something. We thought maybe it was coincidental spam because he swore he didn't even look at daybeds... then we investigated. About 2 hours after taking his sleeping meds he used his phone (which he can thankfully still manipulate) to look up daybeds on amazon. He found one he liked and he ordered it.... a $500 daybed... and there were 2 more in his cart! Thankfully he didn't order all three! So now we're waiting for the bed to arrive so I can get it shipped back and get a refund. He's not on Ambien but it's kind of like the crazy things you hear about people doing when they take Ambien. He was drugged up shopping. I had to remove the credit card information from his amazon account. He got cut off! Sweet of him to want to help out even in his altered state! At first I was irritated but now I think it's really funny. It's a good story in any case.
We're still thinking about bed arrangements, maybe I'll see if I can trade beds with Owen as he has a twin. I wouldn't mind having a daybed as a guest bed or something for the future but $500 for a bed without a mattress is just a little steep for what we need it for. I was thinking about giving the daybed to Owen once I was done with it but he's growing so fast that I figure I'll have to get him a full size bed before too long anyway.
As for me, I'm doing ok. Last year was more physically demanding I think but this year has been more emotionally demanding. I take every little thing to heart and get over-emotional when I don't really need to. HA! So... back to normal? ;) I'm taking my thyroid meds regularly finally and I've been having a bit of aphasia (I forget words or lose my train of thought mid-sentence). This happened before so I'm going to get my levels tested again because apparently too much thyroid hormone in your system can cause that. I'm not a fan of whatever is happening. Not like the memory loss could be stress related... heh. I try to do things for myself but none of it feels particularly rejuvenating.
We're thinking about trying to get Dave up in the chair and over to the school for Owen's 8th grade departure ceremony. It's only about 3/4 of a mile away with sidewalks the whole way, we could probably push him in the chair there if need be if the weather is nice. There are wheelchair accessible cabs... yes, but fresh air! We'll see how he's feeling in a couple of weeks. We have time to decide. I keep thinking that he likely won't see Owen graduate from high school so this might be a nice memory for Owen to have. I figure I'll be a mess if Dave does make it there but I'll be a mess if he doesn't so I'd rather him be there if at all possible.
I'll try to write more regularly so it's not a novel every time but no promises ;)
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