It's been a long time since I've written and the opportunity came up to join some friends on a new blog site so I jumped at it. It's always been really cathartic for me to write. The goal is to post every Tuesday to share what we're up to. Maybe I'll get Owen to write some with me, if he dares! I promise it won't be all doom and gloom.
Much love!
Marla
http://rysham.com/site/2015/01/27/life_after_cancer/
Tuesday, January 27, 2015
Tuesday, February 25, 2014
Productivity?
I'm still trying to take care of everything that needs taken care of. Changing names on bills, filing paperwork etc etc boring stuff. To add a little extra fun tax season is coming and I need to finish those up (almost done) and then the Visa I use for everything got canceled because of the Target guffaw around Christmas so I got a new card that I have to make sure I update everywhere I use it.
Today I'm feeling productive, probably why I have the energy to write this. That hasn't always been the case since my last post. Things are finally starting to sink in and that is difficult. We'll power through but it slows us down a bit.
The movie Long Kiss Goodnight (geena davis and samuel l jackson) was on the other day so I watched it which is funny because when it came out in the theater I really wanted to go see it and Dave and Tim went without me. Dave said he'd go see it with me too but I was so mad/stubborn about it I wouldn't watch it. It was a couple of years before I finally watched it. It seems silly now, but at the time I'm sure it was the worst thing he had ever done. It's funny the things we see as important when everything else is pretty hunky dorey compared to when things are tough and you let little things go. ANYWAY. There's a line in the movie that says, "Life is pain. Get used to it." While I don't think that life is always pain I was struck by the phrase. "get used to it." Not get over it. Get used to it. It's part of the whole new normal concept. We'll get used to it but right now it just sucks. There's really no better way to describe it. As an aside Dave never went to a movie I wanted to see without me again. haha
I canceled David's phone today. That was difficult as well but we were paying for it when we didn't need to be. I can still access everything on it via wi-fi but it's just little things like that I like to do all at once so I don't prolong the agony. If I did one thing every day like I was doing before then every day I would have a reminder in my face about it. Not that it's not already in my face but that makes it worse. I wish it was one of those things you can get desensitized to.
So the obituary. I put a longer one in the funeral program and I guess I'll just do a summarized short one in the register guard. They charge you the same as any other classified ad, $25 per inch which is about 20 words per inch, and I could write a novel if they let me so I guess that's how I'll deal with it. I feel less pressure since the funeral has already happened and I'm not on a schedule here.
One of the benefits of Hospice is that they provide bereavement services after the loved one has departed. (that's so gently worded) The social worker/counselor gave me a visit and it happened to be on the worst day so far. Maybe good timing? She gave me a chapter from a book about things that happen when you lose a spouse. It was really aimed more at elderly spouses and it was really not at all encouraging for a younger person. About how women tend to spend the rest of their lives alone vs men who get back out there. I'm sure it's helpful for some people but I didn't find it helpful at all. Where are the books about losing someone when you're young. I googled it out of curiosity "losing a young spouse" then giggled at the link that said "How to live after the death of a spouse: 10 steps (with pictures)" With pictures. hahahaha I'll say that the watercolor images really weren't necessary or beneficial.
Yesterday I decided to clean the fridge, take out shelves and all that. About halfway through I got irritated and just grabbed my ipod and left for a walk. Didn't have to check with anyone first, didn't have to make sure Dave was ok, just left. I only went 1.72 (yay gps) miles but it was kind of liberating. Of course about a mile in I realized I need new shoes. HA! the blister on my pinky toe isn't happy but I'm glad I could get some of that frustration out. I forget about the exercise endorphines. I need to get back to that. Owen has expressed interest in doing something, like bootcamp, with me. I don't know if we're quite to that point of readiness yet but I don't want to discourage him. Maybe I'll borrow from his motivation.
Today I'm feeling productive, probably why I have the energy to write this. That hasn't always been the case since my last post. Things are finally starting to sink in and that is difficult. We'll power through but it slows us down a bit.
The movie Long Kiss Goodnight (geena davis and samuel l jackson) was on the other day so I watched it which is funny because when it came out in the theater I really wanted to go see it and Dave and Tim went without me. Dave said he'd go see it with me too but I was so mad/stubborn about it I wouldn't watch it. It was a couple of years before I finally watched it. It seems silly now, but at the time I'm sure it was the worst thing he had ever done. It's funny the things we see as important when everything else is pretty hunky dorey compared to when things are tough and you let little things go. ANYWAY. There's a line in the movie that says, "Life is pain. Get used to it." While I don't think that life is always pain I was struck by the phrase. "get used to it." Not get over it. Get used to it. It's part of the whole new normal concept. We'll get used to it but right now it just sucks. There's really no better way to describe it. As an aside Dave never went to a movie I wanted to see without me again. haha
I canceled David's phone today. That was difficult as well but we were paying for it when we didn't need to be. I can still access everything on it via wi-fi but it's just little things like that I like to do all at once so I don't prolong the agony. If I did one thing every day like I was doing before then every day I would have a reminder in my face about it. Not that it's not already in my face but that makes it worse. I wish it was one of those things you can get desensitized to.
So the obituary. I put a longer one in the funeral program and I guess I'll just do a summarized short one in the register guard. They charge you the same as any other classified ad, $25 per inch which is about 20 words per inch, and I could write a novel if they let me so I guess that's how I'll deal with it. I feel less pressure since the funeral has already happened and I'm not on a schedule here.
One of the benefits of Hospice is that they provide bereavement services after the loved one has departed. (that's so gently worded) The social worker/counselor gave me a visit and it happened to be on the worst day so far. Maybe good timing? She gave me a chapter from a book about things that happen when you lose a spouse. It was really aimed more at elderly spouses and it was really not at all encouraging for a younger person. About how women tend to spend the rest of their lives alone vs men who get back out there. I'm sure it's helpful for some people but I didn't find it helpful at all. Where are the books about losing someone when you're young. I googled it out of curiosity "losing a young spouse" then giggled at the link that said "How to live after the death of a spouse: 10 steps (with pictures)" With pictures. hahahaha I'll say that the watercolor images really weren't necessary or beneficial.
Yesterday I decided to clean the fridge, take out shelves and all that. About halfway through I got irritated and just grabbed my ipod and left for a walk. Didn't have to check with anyone first, didn't have to make sure Dave was ok, just left. I only went 1.72 (yay gps) miles but it was kind of liberating. Of course about a mile in I realized I need new shoes. HA! the blister on my pinky toe isn't happy but I'm glad I could get some of that frustration out. I forget about the exercise endorphines. I need to get back to that. Owen has expressed interest in doing something, like bootcamp, with me. I don't know if we're quite to that point of readiness yet but I don't want to discourage him. Maybe I'll borrow from his motivation.
Wednesday, February 12, 2014
Two weeks already?
It's been almost exactly two weeks since Dave passed. By almost exactly I mean... 15 minutes ago it was 2 weeks exactly. I have a complete lack of comprehension of time. (and so does Owen since he walked to school this morning then realized that he has a late start and was 2 hours early... oops.)
What have we been doing? The first week was full of funeral planning and making immediate arrangements. Now is the nitty gritty dirty work of notification and social security and death certificate distribution and ... ugh... insurance mucking. I tried to do too much too soon and got completely overwhelmed, or underwhelmed, at the speed at which the rest of the world works. Read: not fast enough. Then at the end of last week we had a nice little snow/ice storm that effectively shut down Oregon and I got roughly zero things done for a few days. Talk about anxiety. I should have lounged around eating bon bons and watching soap operas but instead I tried to make lists so I know what I need to do. That helps actually. I also decided if I can accomplish one or two things per day I'm in good shape and still moving forward. I just had to prioritize. In fact, it's only 9:30 now and I've already gotten TWO THINGS DONE! And I'm on a roll so I might actually do THREE things. I'm out of control with productivity! ;)
I've noticed a couple of human nature type things in my process. When I call to get info about what, if anything, I need to do with a company if a woman answers and I tell her that David passed her voice gets softer and she gets empathetic and apologetic. If a man answers he gets more business-like. I read it as a masculine, "I'm going to make things easier for you by taking care of business" whereas women I read more like, "I'm going to make things easier for you by taking care of business while simultaneously being sympathetic to your loss" They say they're sorry when I tell them and then again at the end of the conversation. My favorite was actually the first guy I talked to from the bank who got very authoritative sounding and never said sorry but got me a lot of information. Thank you anonymous bank guy who didn't know what to say! Saying nothing was perfect in that moment!
The other side of this is my response that I didn't really expect. It's nice to have people be caring and considerate and gentle, for lack of a better word. But it's difficult to hear. I don't feel sorry for myself and don't want other people to either. (ok that's a tiny lie, I have moments of feeling sorry for myself but I try to keep that in check) So my unexpected response is sadness. At the funeral I was fully expecting to hear people say they're sorry for our loss and that's perfectly acceptable. I was in a headspace to hear that and honestly you get a little numb to it after a while and that's a good thing. But hearing it here and there throughout the day while trying to take care of other business catches me off guard in an emotional way. I know you're sorry, so am I. It makes me want to blurt out " David passed away a couple of weeks ago, please don't say sorry just tell me what steps I need to take to get my ducks in a row." But I don't. It doesn't always bother me but when it does it always hits me at inopportune times, like right before I need to go to the grocery store, not as I'm finishing up errands and heading home.
The most difficult part of this has been figuring out the health insurance. I *think* Owen is eligible for the healthy kids, oregon health plan, whatever it's called thing. But I don't think I am. That's fine, we want to stay with pacificsource but the OHP plan for kids is great so if I can get him on that it's good and I can get separate coverage. I need it to start March 1st which is very do-able since I'm actually taking care of it now. However the website claims OHP can take up to 45 days to get on so I need to figure out if I need to add him to my coverage until that opens up or if it doesn't take 45 days but that's a disclaimer. Calling them is fairly useless because you end up on hold forever and then my phone loses signal or something equally annoying. They're open until 8 pm and they claim the call volume is lower at night, so I guess I'll try back later. In the mean time I'm filling out applications like a boss and getting those ducks in a row so I can send it in today.(that would make FOUR things! Look out!) I figure if I get all the irons in the fire right now then they'll be nice and toasty when I need to use them.
I wish there had been a way to plan ahead better for some of this stuff but there really wasn't. We thought we did a bunch of planning, and we did, but I wish there was a way to do MORE planning. Like a clearing house that notifies everyone for you or something. The funeral home gives you a list of places to think about notifying but they give it to you after someone dies. When you make pre-arrangements I think that would be a helpful list to have BEFORE they die so you can get all the phone numbers/account numbers together and just have one master list to work from instead of being foggy and trying to collect that information later. Knowing how many death certificates you need and things of that nature. Not that it's hard info to collect, it would just take a step out of the process. That's going in the book we're writing. If there is anything I can do to help people in similar situations to make the process just a tiny bit easier I feel like it's my duty to do that. Plus I'm bossy and helpful so if I can tell people what to do and have it help them that's kind of perfect. haha
As for how Owen and I are doing, well, we're ok mostly. We've been living with this and mourning this for 2 years. We're tired. We're not sleeping as well as we could be although I think that's slowly getting better. We talk about Dave a lot and miss him a ton but we know what he wanted for us and 2 years is a long time to process, even if we didn't always believe he would be gone. It's different now but it's not like when someone dies suddenly. We've been through the bulk of it and now we're experiencing a different step in the process where we're kind of in the acceptance and resolution stage. That feels like a rollercoaster. It's an awful feeling because society tells us that there's a mourning period and we should feel a certain way and we don't really so clearly we're doing it wrong. But it feels good because we're not starting at the beginning and we can see the light at the end of this very long tunnel. We WANT to see light. Please show us light! We want to move forward and that's huge. We'll never be "over it" but we know we'll get past it and have to continue living our own lives and finding our new normal.
As an aside: Do you know how hard it was to have to stay in the house last weekend because of the snow?! Cruel joke to be sure. The first weekend in 2 years we could go out and do something and we're literally trapped at home. Maybe it was good to have a forced moment to pause and ponder. But now that's over and we went to dinner the other night and today I think we're going to a movie because FROZEN AND THE LEGO MOVIE ARE CALLING OUR NAMES!
Owen's birthday is monday. 15 years old. Oh I should add "get him a book from the DMV to study for his permit test" to my list of things to do. (Five things?! That might be pushing it) We don't know what we want to do but we know we want to spend it together and we want to spend it out of the house. I'm glad he still likes me because I adore the heck out of that kid. He amazes me every day with his insights and observations and understanding. We have our bickery moments but we always come back and apologize and make things right. We're mother and son but we're also friends, I think we have an excellent foundation for getting through this. I hope I can say the same thing when he's about to turn 16 or 17 or 18.. or 40. LOL
I kept the sappier stuff out of this post. I have a lot of that in me but I just can't let most of it out yet. This is your official warning!! ;)
What have we been doing? The first week was full of funeral planning and making immediate arrangements. Now is the nitty gritty dirty work of notification and social security and death certificate distribution and ... ugh... insurance mucking. I tried to do too much too soon and got completely overwhelmed, or underwhelmed, at the speed at which the rest of the world works. Read: not fast enough. Then at the end of last week we had a nice little snow/ice storm that effectively shut down Oregon and I got roughly zero things done for a few days. Talk about anxiety. I should have lounged around eating bon bons and watching soap operas but instead I tried to make lists so I know what I need to do. That helps actually. I also decided if I can accomplish one or two things per day I'm in good shape and still moving forward. I just had to prioritize. In fact, it's only 9:30 now and I've already gotten TWO THINGS DONE! And I'm on a roll so I might actually do THREE things. I'm out of control with productivity! ;)
I've noticed a couple of human nature type things in my process. When I call to get info about what, if anything, I need to do with a company if a woman answers and I tell her that David passed her voice gets softer and she gets empathetic and apologetic. If a man answers he gets more business-like. I read it as a masculine, "I'm going to make things easier for you by taking care of business" whereas women I read more like, "I'm going to make things easier for you by taking care of business while simultaneously being sympathetic to your loss" They say they're sorry when I tell them and then again at the end of the conversation. My favorite was actually the first guy I talked to from the bank who got very authoritative sounding and never said sorry but got me a lot of information. Thank you anonymous bank guy who didn't know what to say! Saying nothing was perfect in that moment!
The other side of this is my response that I didn't really expect. It's nice to have people be caring and considerate and gentle, for lack of a better word. But it's difficult to hear. I don't feel sorry for myself and don't want other people to either. (ok that's a tiny lie, I have moments of feeling sorry for myself but I try to keep that in check) So my unexpected response is sadness. At the funeral I was fully expecting to hear people say they're sorry for our loss and that's perfectly acceptable. I was in a headspace to hear that and honestly you get a little numb to it after a while and that's a good thing. But hearing it here and there throughout the day while trying to take care of other business catches me off guard in an emotional way. I know you're sorry, so am I. It makes me want to blurt out " David passed away a couple of weeks ago, please don't say sorry just tell me what steps I need to take to get my ducks in a row." But I don't. It doesn't always bother me but when it does it always hits me at inopportune times, like right before I need to go to the grocery store, not as I'm finishing up errands and heading home.
The most difficult part of this has been figuring out the health insurance. I *think* Owen is eligible for the healthy kids, oregon health plan, whatever it's called thing. But I don't think I am. That's fine, we want to stay with pacificsource but the OHP plan for kids is great so if I can get him on that it's good and I can get separate coverage. I need it to start March 1st which is very do-able since I'm actually taking care of it now. However the website claims OHP can take up to 45 days to get on so I need to figure out if I need to add him to my coverage until that opens up or if it doesn't take 45 days but that's a disclaimer. Calling them is fairly useless because you end up on hold forever and then my phone loses signal or something equally annoying. They're open until 8 pm and they claim the call volume is lower at night, so I guess I'll try back later. In the mean time I'm filling out applications like a boss and getting those ducks in a row so I can send it in today.(that would make FOUR things! Look out!) I figure if I get all the irons in the fire right now then they'll be nice and toasty when I need to use them.
I wish there had been a way to plan ahead better for some of this stuff but there really wasn't. We thought we did a bunch of planning, and we did, but I wish there was a way to do MORE planning. Like a clearing house that notifies everyone for you or something. The funeral home gives you a list of places to think about notifying but they give it to you after someone dies. When you make pre-arrangements I think that would be a helpful list to have BEFORE they die so you can get all the phone numbers/account numbers together and just have one master list to work from instead of being foggy and trying to collect that information later. Knowing how many death certificates you need and things of that nature. Not that it's hard info to collect, it would just take a step out of the process. That's going in the book we're writing. If there is anything I can do to help people in similar situations to make the process just a tiny bit easier I feel like it's my duty to do that. Plus I'm bossy and helpful so if I can tell people what to do and have it help them that's kind of perfect. haha
As for how Owen and I are doing, well, we're ok mostly. We've been living with this and mourning this for 2 years. We're tired. We're not sleeping as well as we could be although I think that's slowly getting better. We talk about Dave a lot and miss him a ton but we know what he wanted for us and 2 years is a long time to process, even if we didn't always believe he would be gone. It's different now but it's not like when someone dies suddenly. We've been through the bulk of it and now we're experiencing a different step in the process where we're kind of in the acceptance and resolution stage. That feels like a rollercoaster. It's an awful feeling because society tells us that there's a mourning period and we should feel a certain way and we don't really so clearly we're doing it wrong. But it feels good because we're not starting at the beginning and we can see the light at the end of this very long tunnel. We WANT to see light. Please show us light! We want to move forward and that's huge. We'll never be "over it" but we know we'll get past it and have to continue living our own lives and finding our new normal.
As an aside: Do you know how hard it was to have to stay in the house last weekend because of the snow?! Cruel joke to be sure. The first weekend in 2 years we could go out and do something and we're literally trapped at home. Maybe it was good to have a forced moment to pause and ponder. But now that's over and we went to dinner the other night and today I think we're going to a movie because FROZEN AND THE LEGO MOVIE ARE CALLING OUR NAMES!
Owen's birthday is monday. 15 years old. Oh I should add "get him a book from the DMV to study for his permit test" to my list of things to do. (Five things?! That might be pushing it) We don't know what we want to do but we know we want to spend it together and we want to spend it out of the house. I'm glad he still likes me because I adore the heck out of that kid. He amazes me every day with his insights and observations and understanding. We have our bickery moments but we always come back and apologize and make things right. We're mother and son but we're also friends, I think we have an excellent foundation for getting through this. I hope I can say the same thing when he's about to turn 16 or 17 or 18.. or 40. LOL
I kept the sappier stuff out of this post. I have a lot of that in me but I just can't let most of it out yet. This is your official warning!! ;)
Friday, January 31, 2014
The Post I Didn't Want To Make
Somewhere inside me I never thought I'd have to write this post.
David passed away Wednesday morning, January 29th, 2014.
I know people often say that someone's passing was peaceful but I'm not sure I ever fully appreciated what that might mean until now.
At 8:54 am I started to give him his next dose of pain meds (due at 9) and I noticed his breathing was a little more uneven than before. Still quiet but definitely uneven. I felt like this was different than the other times his breathing pattern changed and I cuddled up close and held him as he took his final few breaths. I found it somehow fitting that the only lights I had bothered to turn on that morning were the Christmas lights we still have hanging in our room because he asked me to leave them up. They were perfect if there is such a thing. Truly.
He took his last breath at 9:01 and I feel so blessed to have been able to be with him. He said all along that he hoped I would be sleeping or taking a shower or out of the house or something when he passed because he didn't want me to have to live with that memory but it will always be one of my most precious memories. Bittersweet to be certain but what a blessing to feel his pain drift away. To not have to see my love suffer any longer with the hardships the last two years have brought him, both emotional and physical, and know that he's whole again. He has a wanderlust that's been stifled by circumstance and I was genuinely excited for him to get to travel to someplace he has, in essence, been waiting to go his whole life.
Rose and I got Owen from school and he and I had a nice family moment with Dave before they came to pick him up. We don't feel we left anything unsaid. That was part of the blessing of having so long to grieve.
We spent the day surrounded by friends and family, crying, laughing, hiding in our rooms or playing video games if that's what we needed to do (esp if your name is owen... heh) I told him it's ok if he needs space, he can hide from anyone but me and so far he's not even attempting to hide from me. I don't know how I got so lucky. Tim said that Owen is growing into the same type of gentle, spazzy man that his father was. I can't think of a more perfect description.
I feel that every post of this blog for the last 2 years has been a love letter of sorts to David. He read every post up until my last one and I read that one to him. It breaks my heart to lose my best friend but it also broke my heart to watch him suffer. Today, the 31st, is my birthday. I could sit around feeling sorry for myself, and I might do a tiny bit of that, but would rather consider this a gift. To me and to Dave, really. I'm relieved. Ya, I said the secret thing people don't want to talk about. There is relief mixed in with all the pain. There's some survivors guilt for sure but mostly I'm relieved to the point of tears that he isn't in pain every day. I kind of don't know what to do with myself because the majority of my energy revolved around taking care of him. I'll figure it out. We will honor him by finding a new normal.
There will be a service for David at the LDS chapel at 550 North Danebo in Eugene on Tuesday Feb 4th at 2:00 pm. All are welcome. I made a choice to spend my birthday with my son instead of looking to see what the obituary deadline was and it looks as though the Obit may not run until after the service. Oops... I feel pretty terrible about it actually but since there's nothing I can do about it I'll just suck it up and spread the word in other ways. I can only do so much and I suspect he would have wanted me to spend the day with my most favorite person in the world anyway instead of doing unfun stuff so maybe in that way I also honor him. Ya, I'm gonna go with that.
David passed away Wednesday morning, January 29th, 2014.
I know people often say that someone's passing was peaceful but I'm not sure I ever fully appreciated what that might mean until now.
At 8:54 am I started to give him his next dose of pain meds (due at 9) and I noticed his breathing was a little more uneven than before. Still quiet but definitely uneven. I felt like this was different than the other times his breathing pattern changed and I cuddled up close and held him as he took his final few breaths. I found it somehow fitting that the only lights I had bothered to turn on that morning were the Christmas lights we still have hanging in our room because he asked me to leave them up. They were perfect if there is such a thing. Truly.
He took his last breath at 9:01 and I feel so blessed to have been able to be with him. He said all along that he hoped I would be sleeping or taking a shower or out of the house or something when he passed because he didn't want me to have to live with that memory but it will always be one of my most precious memories. Bittersweet to be certain but what a blessing to feel his pain drift away. To not have to see my love suffer any longer with the hardships the last two years have brought him, both emotional and physical, and know that he's whole again. He has a wanderlust that's been stifled by circumstance and I was genuinely excited for him to get to travel to someplace he has, in essence, been waiting to go his whole life.
Rose and I got Owen from school and he and I had a nice family moment with Dave before they came to pick him up. We don't feel we left anything unsaid. That was part of the blessing of having so long to grieve.
We spent the day surrounded by friends and family, crying, laughing, hiding in our rooms or playing video games if that's what we needed to do (esp if your name is owen... heh) I told him it's ok if he needs space, he can hide from anyone but me and so far he's not even attempting to hide from me. I don't know how I got so lucky. Tim said that Owen is growing into the same type of gentle, spazzy man that his father was. I can't think of a more perfect description.
I feel that every post of this blog for the last 2 years has been a love letter of sorts to David. He read every post up until my last one and I read that one to him. It breaks my heart to lose my best friend but it also broke my heart to watch him suffer. Today, the 31st, is my birthday. I could sit around feeling sorry for myself, and I might do a tiny bit of that, but would rather consider this a gift. To me and to Dave, really. I'm relieved. Ya, I said the secret thing people don't want to talk about. There is relief mixed in with all the pain. There's some survivors guilt for sure but mostly I'm relieved to the point of tears that he isn't in pain every day. I kind of don't know what to do with myself because the majority of my energy revolved around taking care of him. I'll figure it out. We will honor him by finding a new normal.
There will be a service for David at the LDS chapel at 550 North Danebo in Eugene on Tuesday Feb 4th at 2:00 pm. All are welcome. I made a choice to spend my birthday with my son instead of looking to see what the obituary deadline was and it looks as though the Obit may not run until after the service. Oops... I feel pretty terrible about it actually but since there's nothing I can do about it I'll just suck it up and spread the word in other ways. I can only do so much and I suspect he would have wanted me to spend the day with my most favorite person in the world anyway instead of doing unfun stuff so maybe in that way I also honor him. Ya, I'm gonna go with that.
Tuesday, January 28, 2014
Thanks For The Pie.
Things are little by little getting quieter around here. Last night at bedtime I asked Dave if he thought he could swallow a couple of pills. I planned to only offer the morphine and the diuretic as they are tiny and I felt they were the more important of the lot. He looked at them and nodded yes. Morphine first. He took a sip of water and I gave him the pill. He drank a bit more then after a moment he made his snarl face which is not unlike his Billy Idol face that he confesses as a teen he practiced in the mirror because Billy Idol was pretty cool. "You didnt swallow it, did you?" *shakes head* "Let me see" *opens his mouth* and there it was. I pulled it back out and let him know that's ok and thats why we have the liquid meds so we'll just use those instead. The nurse prepped me for such an instance so I had the dosage all worked out and written down. I spent a few minutes setting alarms on my phone and away we went on the every 3 or 4 hour schedule. Every 3 hours at night to help him sleep and 4 during the day unless it seems like he needs more. I rested a lot but didnt really sleep. I liken it to a new parent's schedule. Every couple of hours you attend to some need, it's exhausting but it's a labor of love. It makes sense really that we would ideally give someone at the end of their life the same love and attention that you'd give someone at the beginning of their life.
I fully believe that David is still aware of whats going on and he hears and understands what we say to him, or around him. The last couple of days he's done a lot of mumbling in his wakeful moments. Last night his sister and family came to visit, I'm pretty sure he told his sister, "Thanks for the pie" as she was preparing to leave. I know he was saying thank you for coming to say goodbye, and he did say that, it just took a second to get the words to come out right. I'd like to think he was also thanking them for the dozens of Thanksgiving pies we've shared with them over the years. The man likes pie.
This morning (Monday) as Owen left for school David woke and told him bye and he loves him. Thats pretty much the last coherent thing he's said. It's obvious that he hears us and sometimes reacts but doesn't talk much. It takes too much energy. When Owen said goodnight and gave Dave a hug Owen got a kiss on the cheek. That boy means the world to Dave and he continues to show it even when he can't say it out loud.
The missionaries came to visit the other day and offered Dave and I both blessings. He kept saying "bless you too" to me, to make sure I was also taken care of. Like always.
I told Owen Sunday night that I didn't know what would happen this week but we just have to power through. He has finals so I carefully worded permission for him to not have to stress about his grades for half a second. Just do your best and it doesn't matter what the grade ends up being. All we can do is our best. He looked skeptical and wanted to know if I would feel the same way once I see his grades. Hahaha maybe he wants it in writing. For now I'm trying to keep his schedule as normal as possible but it's an abnormal week both at home and at school. I suppose that's fitting. We'll see what the rest of the week brings.
Every day we've seen a small but specific decline in David and I expect that to continue. We're being well looked after by hospice and he seems very comfortable and at peace. I know he's ready to go and while we'll never be ready to let him go I think we're as ready as we can be. I'll update more when my scattered brain can put together thoughts. Thank you for all the messages of love and for keeping us all in your thoughts and prayers. We take it all to heart.
I fully believe that David is still aware of whats going on and he hears and understands what we say to him, or around him. The last couple of days he's done a lot of mumbling in his wakeful moments. Last night his sister and family came to visit, I'm pretty sure he told his sister, "Thanks for the pie" as she was preparing to leave. I know he was saying thank you for coming to say goodbye, and he did say that, it just took a second to get the words to come out right. I'd like to think he was also thanking them for the dozens of Thanksgiving pies we've shared with them over the years. The man likes pie.
This morning (Monday) as Owen left for school David woke and told him bye and he loves him. Thats pretty much the last coherent thing he's said. It's obvious that he hears us and sometimes reacts but doesn't talk much. It takes too much energy. When Owen said goodnight and gave Dave a hug Owen got a kiss on the cheek. That boy means the world to Dave and he continues to show it even when he can't say it out loud.
The missionaries came to visit the other day and offered Dave and I both blessings. He kept saying "bless you too" to me, to make sure I was also taken care of. Like always.
I told Owen Sunday night that I didn't know what would happen this week but we just have to power through. He has finals so I carefully worded permission for him to not have to stress about his grades for half a second. Just do your best and it doesn't matter what the grade ends up being. All we can do is our best. He looked skeptical and wanted to know if I would feel the same way once I see his grades. Hahaha maybe he wants it in writing. For now I'm trying to keep his schedule as normal as possible but it's an abnormal week both at home and at school. I suppose that's fitting. We'll see what the rest of the week brings.
Every day we've seen a small but specific decline in David and I expect that to continue. We're being well looked after by hospice and he seems very comfortable and at peace. I know he's ready to go and while we'll never be ready to let him go I think we're as ready as we can be. I'll update more when my scattered brain can put together thoughts. Thank you for all the messages of love and for keeping us all in your thoughts and prayers. We take it all to heart.
Saturday, January 25, 2014
Chutes and Ladders
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.
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.
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 ;)
Sunday, March 31, 2013
Still here!
Hi strangers!
I know it's been a while since I've posted, every time I sit down to write the words just don't come to me so I'll try to summarize. Dave and Owen recovered from their colds nicely and I thankfully never got it. We all three had birthdays, low key quiet birthdays. 40, 37 and 14... I'll let you guess who's age is whose. lol
Basically the last couple months have been a roller coaster. We hit a lot of one year milestones and they've just been difficult to navigate. We're kind of out of the shocked stage and on to actually dealing with everything that's happened in the last year. I'm kind of a fan of the idea of going back into shock. In shock I was managing just fine. Now I'm kind of up and down and having a harder time managing. Pretty much only thing things that HAVE to be done are getting done at this point and I'm ok with that. I even turned down some stuff people wanted me to volunteer for, that was hard to do. I was away from the house for 6 hours one day helping with a fundraiser at the school (that I helped to organize). Tim came to the house and hung out with Dave and while I was at school I realized that I haven't been away from home that long in a whole year. That wears on me sometimes. I can't imagine what it must do to Dave who has much greater wanderlust than I do.
A quick overview update of things. Not much has changed. Dave is taking some new meds to try to get rid of the tingling in his right hand. It annoyed him so much he held on to his hand pretty much constantly. Now he's taking a new med, Neurontin, and it's helping that pain but it's also making him more clumsy and a little bit forgetful. We're trying to decide the best course of action. He's also having side effects from the steroids he's on but they're helping his shoulder and neck pain so much that he can't really bear to go off them. He decided to suffer through the inconvenient side effects for the more beneficial effects. It's hard to know exactly what to do to make things better since all the meds have side effects and interact in different ways.
I'll write more later but those are the main points I wanted to touch on and to say that yes, I know I've gotten multiple emails from some of you and no I'm not avoiding replying, I've just got too much on my mind and plate to reply at the moment but we're here and we're fine (relatively) and we're just plugging along and doing the best with what we have.
I know it's been a while since I've posted, every time I sit down to write the words just don't come to me so I'll try to summarize. Dave and Owen recovered from their colds nicely and I thankfully never got it. We all three had birthdays, low key quiet birthdays. 40, 37 and 14... I'll let you guess who's age is whose. lol
Basically the last couple months have been a roller coaster. We hit a lot of one year milestones and they've just been difficult to navigate. We're kind of out of the shocked stage and on to actually dealing with everything that's happened in the last year. I'm kind of a fan of the idea of going back into shock. In shock I was managing just fine. Now I'm kind of up and down and having a harder time managing. Pretty much only thing things that HAVE to be done are getting done at this point and I'm ok with that. I even turned down some stuff people wanted me to volunteer for, that was hard to do. I was away from the house for 6 hours one day helping with a fundraiser at the school (that I helped to organize). Tim came to the house and hung out with Dave and while I was at school I realized that I haven't been away from home that long in a whole year. That wears on me sometimes. I can't imagine what it must do to Dave who has much greater wanderlust than I do.
A quick overview update of things. Not much has changed. Dave is taking some new meds to try to get rid of the tingling in his right hand. It annoyed him so much he held on to his hand pretty much constantly. Now he's taking a new med, Neurontin, and it's helping that pain but it's also making him more clumsy and a little bit forgetful. We're trying to decide the best course of action. He's also having side effects from the steroids he's on but they're helping his shoulder and neck pain so much that he can't really bear to go off them. He decided to suffer through the inconvenient side effects for the more beneficial effects. It's hard to know exactly what to do to make things better since all the meds have side effects and interact in different ways.
I'll write more later but those are the main points I wanted to touch on and to say that yes, I know I've gotten multiple emails from some of you and no I'm not avoiding replying, I've just got too much on my mind and plate to reply at the moment but we're here and we're fine (relatively) and we're just plugging along and doing the best with what we have.
Sunday, January 27, 2013
Cooties!
So turns out things weren't exactly back to "normal". Dave definitely caught a cold and yesterday morning started coughing pretty bad. It got worse throughout the day and last night neither of us slept very well because his cough sounds SO awful. I was on high alert. At one point he knocked something over and I thought it was his water, I went from mostly asleep to on my feet in half a second. Thankfully it wasn't anything important and I could lay back down.
The big problem with him coughing is that he can't. Yeah... he can't. Think about when you get sick and how much your abs hurt when you have been coughing a ton, he doesn't have the ab muscles to help his body cough things out. We've figured out a way (yay google) to assist him where I basically give him resistance on his stomach, below the rib cage, so his diaphragm has something to press against when he tries to cough. It seems to work fairly well but it's a bit of a production and it wears him out.
Normally a cold like this wouldn't be a big deal but in his case it could go from bad to BAD very quickly. We're mostly concerned about pneumonia. He's taking some meds and sucking on cough drops like candy and I got a vaporizer to help keep things loose. He's been sleeping a lot which is good since he didn't sleep much during the night. It's stressful on both of us.A hospice nurse is making an unscheduled visit tomorrow just to check on him which is good.
Owen is still sick, he missed pretty much all of last week of school. I sent him back on Thursday only to get a call around 1:15 from the school nurse saying he has a fever and please come get him. He's been laid up all week/weekend and has been putting himself to bed at 8. That's totally unheard of. I'm hoping he's well enough to go to school in the morning but part of me is so hesitant because his immune system is low and I don't want him catching MORE cooties from the other sickies at school. If he stays home tomorrow I think I should take him to the Dr although I hate to because they'll probably just say he's got a virus and send him back home.
It's been a rough week for me because I have been feeling a little under the weather myself although thankfully not as bad as the boys. Not only am I doing the normal stuff taking care of David but now Owen needs to be taken care of AND I don't have my helper around because he's sick in bed. I don't feel like I can afford to have a cranky day. We're kind of on lockdown around here, no germs in or out if we can help it.
Oh yeah, and David has treatment on wednesday. We're not sure what's going to happen if he still has this cough. We'll have to evaluate the risks/reward when it gets closer. Hopefully he's on the upswing and this will all be a distant memory soon enough.
Wash your hands and don't touch your faces!
The big problem with him coughing is that he can't. Yeah... he can't. Think about when you get sick and how much your abs hurt when you have been coughing a ton, he doesn't have the ab muscles to help his body cough things out. We've figured out a way (yay google) to assist him where I basically give him resistance on his stomach, below the rib cage, so his diaphragm has something to press against when he tries to cough. It seems to work fairly well but it's a bit of a production and it wears him out.
Normally a cold like this wouldn't be a big deal but in his case it could go from bad to BAD very quickly. We're mostly concerned about pneumonia. He's taking some meds and sucking on cough drops like candy and I got a vaporizer to help keep things loose. He's been sleeping a lot which is good since he didn't sleep much during the night. It's stressful on both of us.A hospice nurse is making an unscheduled visit tomorrow just to check on him which is good.
Owen is still sick, he missed pretty much all of last week of school. I sent him back on Thursday only to get a call around 1:15 from the school nurse saying he has a fever and please come get him. He's been laid up all week/weekend and has been putting himself to bed at 8. That's totally unheard of. I'm hoping he's well enough to go to school in the morning but part of me is so hesitant because his immune system is low and I don't want him catching MORE cooties from the other sickies at school. If he stays home tomorrow I think I should take him to the Dr although I hate to because they'll probably just say he's got a virus and send him back home.
It's been a rough week for me because I have been feeling a little under the weather myself although thankfully not as bad as the boys. Not only am I doing the normal stuff taking care of David but now Owen needs to be taken care of AND I don't have my helper around because he's sick in bed. I don't feel like I can afford to have a cranky day. We're kind of on lockdown around here, no germs in or out if we can help it.
Oh yeah, and David has treatment on wednesday. We're not sure what's going to happen if he still has this cough. We'll have to evaluate the risks/reward when it gets closer. Hopefully he's on the upswing and this will all be a distant memory soon enough.
Wash your hands and don't touch your faces!
Friday, January 18, 2013
Back to "Normal"
David is feeling a little better. His throat is still a little sore and his stomach is still a little sensitive but mostly he's on the mend. His blood got tested again and his level is down to 2.3 so he starts back on Coumadin tomorrow but half as much as he was taking before, trying to keep his level where it is instead of spiking it back up.
As for the not passing urine problem that was an issue with the catheter that got taken care of. It basically wasn't completely draining his bladder which led to other issues. We're thankful for a couple of things... that he's already on anti-biotics which staved off a major infection because of that issue AND he has been saying he trained his whole life for such a thing to happen. By that he means that he used to drink a few (yes, few) large convenience store sodas every day and sometimes did the same on long car rides so his bladder was nice and stretched out and prepared for being full! HA!
Needless to say he's more comfortable overall. The tricky thing about paralysis is that he can't really FEEL that there's a problem but his body knows there's an issue and makes him feel out of sorts. He can't pinpoint the cause but he can indicate that there's definitely a problem.
Otherwise things have been pretty quiet around here. Olive hasn't really left David's bed since his treatment on Wednesday, she's so sweet.
Just wanted to drop a quick "all's quiet on the western front" note since I was a little stressed yesterday when I posted. So... All's quiet on the western front!
As for the not passing urine problem that was an issue with the catheter that got taken care of. It basically wasn't completely draining his bladder which led to other issues. We're thankful for a couple of things... that he's already on anti-biotics which staved off a major infection because of that issue AND he has been saying he trained his whole life for such a thing to happen. By that he means that he used to drink a few (yes, few) large convenience store sodas every day and sometimes did the same on long car rides so his bladder was nice and stretched out and prepared for being full! HA!
Needless to say he's more comfortable overall. The tricky thing about paralysis is that he can't really FEEL that there's a problem but his body knows there's an issue and makes him feel out of sorts. He can't pinpoint the cause but he can indicate that there's definitely a problem.
Otherwise things have been pretty quiet around here. Olive hasn't really left David's bed since his treatment on Wednesday, she's so sweet.
Just wanted to drop a quick "all's quiet on the western front" note since I was a little stressed yesterday when I posted. So... All's quiet on the western front!
Thursday, January 17, 2013
Feels Like A Pajama Day
David's having kind of a rough time of things right now. He's got a bit of a sore throat and a headache. I cannot fathom how his throat hurts, he's taking so many different pain meds it doesn't seem possible but there it is. I'm glad the pain meds don't usually knock him out too much but even if they did it would be ok, it's so awful to see him in pain, I would rather see him sleeping just because I know he isn't hurting in his sleep.
Yesterday they told us his protime (blood thinness) is at 5.4 YIKES! It's supposed to be between 2 and 2.5. When he got home from treatment he passed quite a bit of blood in a little bit of urine, not too surprising but quite unsettling. Actually he's not passing much urine at all compared to how much fluid he's had. No Bueno. His stomach is distended and he's not feeling well although thankfully he can't really FEEL anything but pressure in his stomach. We're wondering if the steroids are causing edema, that happened last time he was on steroids but his previous dose was larger than the one he's on now. All of this is "wait and see". I called to talk to the hospice nurse last night and she's coming to visit today but there really is not a whole lot they can do for him besides try to make him comfortable.
Remembering back to his time in the hospital it seems that there isn't a whole lot they can do for him there either so at least he gets to be uncomfortable at home rather than at a hospital where they do most of, if not all, the same stuff we can do for him at home.
Actually if we reflect back a year (why on earth do we do this to ourselves?) Today is the day before he lost feeling in his arms. So basically, a year ago tomorrow is the first day they didn't think he'd make it through the day. Yesterday a friend asked me how he was doing. I said he's not feeling great and they said, "Well considering they thought he was going to die a year ago I'd say he's doing pretty well" HA! TRUE! It's all in the perspective, right? It was good to get that reminder.
So today I'm cutting back his steroid to one dose instead of two (I decided, the nurse/doctor can tell me differently later) and his warfarin, and I'm going to stay in my pajamas until I absolutely have to get dressed because it's just one of those days.
Yesterday they told us his protime (blood thinness) is at 5.4 YIKES! It's supposed to be between 2 and 2.5. When he got home from treatment he passed quite a bit of blood in a little bit of urine, not too surprising but quite unsettling. Actually he's not passing much urine at all compared to how much fluid he's had. No Bueno. His stomach is distended and he's not feeling well although thankfully he can't really FEEL anything but pressure in his stomach. We're wondering if the steroids are causing edema, that happened last time he was on steroids but his previous dose was larger than the one he's on now. All of this is "wait and see". I called to talk to the hospice nurse last night and she's coming to visit today but there really is not a whole lot they can do for him besides try to make him comfortable.
Remembering back to his time in the hospital it seems that there isn't a whole lot they can do for him there either so at least he gets to be uncomfortable at home rather than at a hospital where they do most of, if not all, the same stuff we can do for him at home.
Actually if we reflect back a year (why on earth do we do this to ourselves?) Today is the day before he lost feeling in his arms. So basically, a year ago tomorrow is the first day they didn't think he'd make it through the day. Yesterday a friend asked me how he was doing. I said he's not feeling great and they said, "Well considering they thought he was going to die a year ago I'd say he's doing pretty well" HA! TRUE! It's all in the perspective, right? It was good to get that reminder.
So today I'm cutting back his steroid to one dose instead of two (I decided, the nurse/doctor can tell me differently later) and his warfarin, and I'm going to stay in my pajamas until I absolutely have to get dressed because it's just one of those days.
Saturday, January 5, 2013
Happy 2013!
Boy are we glad to say goodbye to 2012.
I know I haven't written in a while and there are a million reasons for that but most of all it's because we've been busy and emotional and the holidays were a lot more stressful than we anticipated. In fact, Christmas sort of snuck up on us because we were so wrapped up in the emotions of the whole thing so we inadvertently ordered some things that weren't going to arrive until after Christmas. Instead of worrying about it we decided we would celebrate Christmas in two shifts. On New Years Eve we celebrated Christmas part 2; Or as it's now known, "Second Christmas!" It actually relieved some of the stress and we figured since everything is different this year anyway we may as well roll with that.
Even though some of our traditions went to the wayside we couldn't let the season pass without taking our annual holiday picture. Usually we go up in the snow but we decided in front of the tree would be sufficient. I think it worked out just fine!
Christmas Day we got up early (by teen standards, glad he's not little and up super early!) and did our first Christmas, made breakfast together and spent some time in the living room together which NEVER happens. Later my Dad and Stepmom came over and brought dinner which was really nice. It was decided on kind of last minute but we're thankful they came over, it was a difficult day for everyone and we're glad we could be together. David was up in the chair pretty much all day which wore him out but he didn't complain at all because that's where he wanted to be. When he got back into bed he slept the rest of the night!
As for how David is doing... they've changed some of his meds around. He's now on a full time antibiotic to keep infection away, he's on steroids as a kind of last ditch attempt at relieving some of the pain in his shoulder and they've increased his morphine dose at night to relieve a little more pain to let him sleep better. We think all of those things are working to some degree. He can actually lift his left arm a bit now because the shoulder isn't in as much pain. I counted the other day and it averages out to about 26 pills a day. TWENTY-SIX! Yum.
We've also noticed some additional numbness in his right hand and arm all the way up to his shoulder. Why couldn't it be the other shoulder that went numb, the one that hurts from what we suspect is a rotator cuff problem. The right side is the bad side so it's not too big of a deal except that it's more pins and needles kind of feeling and it irritates him rather than hurting. He mentions it in passing maybe once a day and I notice him touching it a lot with his other hand, putting pressure on the sensitive areas. To most people that's nothing but coming from David that's a full on complaint!
We spent Christmas money from his parents on a new Blu-ray player and universal remote for the bedroom so he can watch movies a little easier than the old set-up where we had a computer hooked to the tv and the remote was cumbersome. The blu-ray does netflix and amazon prime and oodles of other online streaming resources and he found a remote app he can use on his phone! The man is set up with gadgets, just the way he likes it. Thanks Mom and Dad!
We expect to see David's parents here sometime this week for a visit, they're in Utah right now for the wedding of one of their Chinese grand daughters. Short story, they taught western culture/english at universities in china for a couple of years and some of their students moved here to go to school. These students are lovingly referred to as their Chinese grand children. David is still getting treatment although luckily this will be a week off so nicely timed!
Thanks for hanging in there for a whole year with us. Yesterday was the anniversary (that word doesn't seem right) of David's diagnosis. We've been wanting to post a "year in review" type of post with some thoughts from David (his family will laugh and expect about 2 sentences out of him) but as you can imagine we've been on a jumbled roller coaster of emotions lately and are having problems forming coherent thoughts. There's a lot of remembering what it was like a year ago, and that was no somewhere either of us really wants to go but it's kind of unavoidable. At least right now things are mostly status quo with minor setbacks and we're used to this new normal. It doesn't make it easy but it does make it predictable which can be somewhat comforting.
Happy New Year!
I know I haven't written in a while and there are a million reasons for that but most of all it's because we've been busy and emotional and the holidays were a lot more stressful than we anticipated. In fact, Christmas sort of snuck up on us because we were so wrapped up in the emotions of the whole thing so we inadvertently ordered some things that weren't going to arrive until after Christmas. Instead of worrying about it we decided we would celebrate Christmas in two shifts. On New Years Eve we celebrated Christmas part 2; Or as it's now known, "Second Christmas!" It actually relieved some of the stress and we figured since everything is different this year anyway we may as well roll with that.
Even though some of our traditions went to the wayside we couldn't let the season pass without taking our annual holiday picture. Usually we go up in the snow but we decided in front of the tree would be sufficient. I think it worked out just fine!
Christmas Day we got up early (by teen standards, glad he's not little and up super early!) and did our first Christmas, made breakfast together and spent some time in the living room together which NEVER happens. Later my Dad and Stepmom came over and brought dinner which was really nice. It was decided on kind of last minute but we're thankful they came over, it was a difficult day for everyone and we're glad we could be together. David was up in the chair pretty much all day which wore him out but he didn't complain at all because that's where he wanted to be. When he got back into bed he slept the rest of the night!
As for how David is doing... they've changed some of his meds around. He's now on a full time antibiotic to keep infection away, he's on steroids as a kind of last ditch attempt at relieving some of the pain in his shoulder and they've increased his morphine dose at night to relieve a little more pain to let him sleep better. We think all of those things are working to some degree. He can actually lift his left arm a bit now because the shoulder isn't in as much pain. I counted the other day and it averages out to about 26 pills a day. TWENTY-SIX! Yum.
We've also noticed some additional numbness in his right hand and arm all the way up to his shoulder. Why couldn't it be the other shoulder that went numb, the one that hurts from what we suspect is a rotator cuff problem. The right side is the bad side so it's not too big of a deal except that it's more pins and needles kind of feeling and it irritates him rather than hurting. He mentions it in passing maybe once a day and I notice him touching it a lot with his other hand, putting pressure on the sensitive areas. To most people that's nothing but coming from David that's a full on complaint!
We spent Christmas money from his parents on a new Blu-ray player and universal remote for the bedroom so he can watch movies a little easier than the old set-up where we had a computer hooked to the tv and the remote was cumbersome. The blu-ray does netflix and amazon prime and oodles of other online streaming resources and he found a remote app he can use on his phone! The man is set up with gadgets, just the way he likes it. Thanks Mom and Dad!
We expect to see David's parents here sometime this week for a visit, they're in Utah right now for the wedding of one of their Chinese grand daughters. Short story, they taught western culture/english at universities in china for a couple of years and some of their students moved here to go to school. These students are lovingly referred to as their Chinese grand children. David is still getting treatment although luckily this will be a week off so nicely timed!
Thanks for hanging in there for a whole year with us. Yesterday was the anniversary (that word doesn't seem right) of David's diagnosis. We've been wanting to post a "year in review" type of post with some thoughts from David (his family will laugh and expect about 2 sentences out of him) but as you can imagine we've been on a jumbled roller coaster of emotions lately and are having problems forming coherent thoughts. There's a lot of remembering what it was like a year ago, and that was no somewhere either of us really wants to go but it's kind of unavoidable. At least right now things are mostly status quo with minor setbacks and we're used to this new normal. It doesn't make it easy but it does make it predictable which can be somewhat comforting.
Happy New Year!
Monday, December 3, 2012
Traditional Sniffles
So Owen has a cold. Not sure where he picked up that little piece of lovely, school probably with all the rest of the germy kids but that's not really something we need around here. He's taken to knuckle bumping instead of hugs and kisses before bed. I hope he gets better soon. Today he took a can of soup and a bowl to heat it up in for lunch (they have microwaves) I thought it was cute. He's not sick enough to stay home, just sick enough to be whiny. I hope Dave doesn't get it. We don't normally get sick a lot around here but when we do it's usually this time of year. Yay.
Dave has been ridiculously tired lately. He spent a good part of last week napping. We think it might be the allergy medicine. He took Allegra for a while and I've always taken Zyrtec because those work better for each of us. Allergy season was over so he stopped taking it and then started getting migraines. We don't know for sure that's what caused the migraines because he isn't having allergy symptoms per se and correlation doesn't equal causation and all that but we figured he should start taking it again so we can rule it out. So... I gave him Zyrtec because I was out of Allegra. It could be why he's been so tired. Today I'm switching it back for the A and we'll see if that fixes the napping problem. He kept apologizing but I think it's probably ok if he sleeps.
His last big migraine was the week before Thanksgiving. He was taking a new antibiotic (Septra) and it was making his stomach hurt with severe nausea (if he can feel it it's severe) which turned into a migraine and throwing up etc etc. I was at a PTO meeting and I got a text message then an immediate panicky phone call from Owen so I came home. Ugh. The hospice/dr's office have Septra listed as an "allergy" now even though I don't think it's a true allergy they don't want to risk him getting it again since he doesn't tolerate it. That was even with the anti-nausea meds! You better believe we'll remember the name of that antibiotic!
This week Owen has a community service project at school for national jr honor society so he'll spend some part of wednesday night doing that. I'm feeding teachers on wednesday but Dave has Chemo so I'll have to get the food tuesday and leave it in the fridge at school and someone else will have to handle it. (yay for having more than just a couple people active on the PTO this year!) Thursday I have parent/teacher conferences and Owen has a half day then friday he gets the day off. Lucky dog. I feel like I'm missing a couple of things but I'm sure I'll figure them out really quickly. I write things on my calendar but I'm getting a little more forgetful.
My weight loss has kind of stalled out at 28 lbs lost (in 12 weeks, not bad) but I think this means I need to actually go back to the gym. I went for a while then got too busy (or lazy, whatever)It's a little frustrating that it was just falling off to begin with and now I'm actually having to work at it. I know for sure I'd feel better and have more energy if I went but actually getting there is a whole other thing entirely. I'm putting the pro in procrastinate. ;)
Owen and I did get a tree this weekend. I need to put the lights on it today (usually Dave's job) and we'll decorate it tonight. There are things that I didn't think would be such a big deal like getting the tree without D but they ended up being a little more difficult than I expected. I imagine a lot of things will be like that but I'm trying to take comfort in knowing that we're not doing them WITHOUT him, he's just not physically present for some of it but he's still here to talk to and work through things with. At some point that may not be the case and I'm hoping that because we've had transition time it will make things a little bit easier. I let Dave pick the colors for the decorations since we kind of switch it up every year. I'll post pictures when we finish. There will definitely have to be some White Christmas watching at some point.
We don't have a lot of traditions but that is one of them.
Oh yeah, and I don't know if we'd call it a tradition but we do have a bit of one. No angels on the top of the tree. Growing up we always had an angel and the first few years David and I were together we had an angel on the tree... until the one year when we had a bunch of baby spiders... and one crawled across the angel's face. HA! EW! NO! Stars... yeah... stars are nice on the top of the tree. I think we'll stick with stars. LOL
Dave has been ridiculously tired lately. He spent a good part of last week napping. We think it might be the allergy medicine. He took Allegra for a while and I've always taken Zyrtec because those work better for each of us. Allergy season was over so he stopped taking it and then started getting migraines. We don't know for sure that's what caused the migraines because he isn't having allergy symptoms per se and correlation doesn't equal causation and all that but we figured he should start taking it again so we can rule it out. So... I gave him Zyrtec because I was out of Allegra. It could be why he's been so tired. Today I'm switching it back for the A and we'll see if that fixes the napping problem. He kept apologizing but I think it's probably ok if he sleeps.
His last big migraine was the week before Thanksgiving. He was taking a new antibiotic (Septra) and it was making his stomach hurt with severe nausea (if he can feel it it's severe) which turned into a migraine and throwing up etc etc. I was at a PTO meeting and I got a text message then an immediate panicky phone call from Owen so I came home. Ugh. The hospice/dr's office have Septra listed as an "allergy" now even though I don't think it's a true allergy they don't want to risk him getting it again since he doesn't tolerate it. That was even with the anti-nausea meds! You better believe we'll remember the name of that antibiotic!
This week Owen has a community service project at school for national jr honor society so he'll spend some part of wednesday night doing that. I'm feeding teachers on wednesday but Dave has Chemo so I'll have to get the food tuesday and leave it in the fridge at school and someone else will have to handle it. (yay for having more than just a couple people active on the PTO this year!) Thursday I have parent/teacher conferences and Owen has a half day then friday he gets the day off. Lucky dog. I feel like I'm missing a couple of things but I'm sure I'll figure them out really quickly. I write things on my calendar but I'm getting a little more forgetful.
My weight loss has kind of stalled out at 28 lbs lost (in 12 weeks, not bad) but I think this means I need to actually go back to the gym. I went for a while then got too busy (or lazy, whatever)It's a little frustrating that it was just falling off to begin with and now I'm actually having to work at it. I know for sure I'd feel better and have more energy if I went but actually getting there is a whole other thing entirely. I'm putting the pro in procrastinate. ;)
Owen and I did get a tree this weekend. I need to put the lights on it today (usually Dave's job) and we'll decorate it tonight. There are things that I didn't think would be such a big deal like getting the tree without D but they ended up being a little more difficult than I expected. I imagine a lot of things will be like that but I'm trying to take comfort in knowing that we're not doing them WITHOUT him, he's just not physically present for some of it but he's still here to talk to and work through things with. At some point that may not be the case and I'm hoping that because we've had transition time it will make things a little bit easier. I let Dave pick the colors for the decorations since we kind of switch it up every year. I'll post pictures when we finish. There will definitely have to be some White Christmas watching at some point.
We don't have a lot of traditions but that is one of them.
Oh yeah, and I don't know if we'd call it a tradition but we do have a bit of one. No angels on the top of the tree. Growing up we always had an angel and the first few years David and I were together we had an angel on the tree... until the one year when we had a bunch of baby spiders... and one crawled across the angel's face. HA! EW! NO! Stars... yeah... stars are nice on the top of the tree. I think we'll stick with stars. LOL
Thursday, November 22, 2012
Thankfulness
Amid all the upheaval this year has brought to our lives we're often reminded of all the things we have to be thankful for. The very tangible things are kind of given. A house over our heads and food on the table, reliable vehicle, health insurance, hospice, etc etc etc. It's not that we're not beyond grateful for those things and we'd be lost without them but there are things we have overlooked in the past that seem so much more important to us. It's less tangible things we have tried to be more mindful of.
We don't know where we'd be this year without the moral support and love from friends and family. For everyone who cares enough to read this and even those who don't, for all the emails, cards, hugs, visits, phone calls, encouragement, shoulders to cry on, hands to hold, laughter and just love in general. I won't sugar coat it, this year has been the worst of our lives in many many ways, so full of loss and stress and impending doom. Heh, that was dramatic, I know. But it's also been full of countless blessings and an out-pouring of love. We've learned to recognize and be thankful for friendships and communities we didn't realize were so important to us. Hopefully we express our gratitude adequately in the moment but sometimes we get overwhelmed and don't do that as well as we could. It's hard to sit back and accept help but we're always reminded to be humble and we've tried to be gracious about it. Please never doubt how grateful we are.
It's been about a year since David was first having symptoms and there were two days early in the year when they didn't think he would live 24 hours, they certainly didn't think he would make it a year. Now look at us. We've found a new normal, he's doing relatively well and things are a little bit status quo. There is no real sense of urgency about anything which is kind of a relief in some ways although it's the quiet, non-urgent moments that get us out of business mode and give us time to think. Not always good for morale which is a little silly and backwards.
Personally, I'm thankful that we've been touched by the lives of the people we've lost this year. Facing the first holiday season without them is daunting but knowing that our lives are better because they were in them brings a sense of comfort at a time when we could be (and sometimes are) wrapped up in the loss. I'm thankful for David's strength and love and understanding. I can't imagine what he must be going through and he constantly gives everything he can give which he says isn't much but it's more than he knows. For Owen and his ability to roll with the punches, his humor and teenagery nonsense that reminds me that life continues as normal and things do exist outside our bubble. For family who includes us in every way they can even when we can't go anywhere. For my communities, ryinburgh, virakar, Owen's school(teachers, parents, admins, pto), pacificsource and church... you all overwhelm me with your understanding and support. And for friends who, more than I'd like to admit, help keep me sane. As sane as I ever am. (David is also thankful for that because he knows that when he's not here to be a support that I still have a good support system.) I don't know what I would do without you and I'm glad I don't have to find out. Thanks!
We don't know where we'd be this year without the moral support and love from friends and family. For everyone who cares enough to read this and even those who don't, for all the emails, cards, hugs, visits, phone calls, encouragement, shoulders to cry on, hands to hold, laughter and just love in general. I won't sugar coat it, this year has been the worst of our lives in many many ways, so full of loss and stress and impending doom. Heh, that was dramatic, I know. But it's also been full of countless blessings and an out-pouring of love. We've learned to recognize and be thankful for friendships and communities we didn't realize were so important to us. Hopefully we express our gratitude adequately in the moment but sometimes we get overwhelmed and don't do that as well as we could. It's hard to sit back and accept help but we're always reminded to be humble and we've tried to be gracious about it. Please never doubt how grateful we are.
It's been about a year since David was first having symptoms and there were two days early in the year when they didn't think he would live 24 hours, they certainly didn't think he would make it a year. Now look at us. We've found a new normal, he's doing relatively well and things are a little bit status quo. There is no real sense of urgency about anything which is kind of a relief in some ways although it's the quiet, non-urgent moments that get us out of business mode and give us time to think. Not always good for morale which is a little silly and backwards.
Personally, I'm thankful that we've been touched by the lives of the people we've lost this year. Facing the first holiday season without them is daunting but knowing that our lives are better because they were in them brings a sense of comfort at a time when we could be (and sometimes are) wrapped up in the loss. I'm thankful for David's strength and love and understanding. I can't imagine what he must be going through and he constantly gives everything he can give which he says isn't much but it's more than he knows. For Owen and his ability to roll with the punches, his humor and teenagery nonsense that reminds me that life continues as normal and things do exist outside our bubble. For family who includes us in every way they can even when we can't go anywhere. For my communities, ryinburgh, virakar, Owen's school(teachers, parents, admins, pto), pacificsource and church... you all overwhelm me with your understanding and support. And for friends who, more than I'd like to admit, help keep me sane. As sane as I ever am. (David is also thankful for that because he knows that when he's not here to be a support that I still have a good support system.) I don't know what I would do without you and I'm glad I don't have to find out. Thanks!
Thursday, November 1, 2012
Halloween: The Cute Story
This year the kids were allowed to dress up in costumes for school. In years past they weren't allowed. Owen decided to be a shadow and wore all black. We told him he couldn't wear that out trick or treating because it was too dangerous. (all black at night? recipe for disaster!) He said he could wear it with reflective strips and be the teenaged child of helicopter parents... har har. Clever little brat. lol I told him he could do that if he wanted but just to think about it and let me know after school. While he was gone I thought maybe he could be Dr Who. He's a BIG FAN and Dave has a jacket that fits Owen that works perfectly. When he got home and agreed to that choice I made a bow tie and a fez for him really quickly (good thing I'm crafty) and he was ready to go. He was going trick or treating with Josie (who introduced him to Dr Who) and it turns out that she had kind of a rough day as one of her wigs got played with too much at school and fell apart. Serious tragedy in the cosplay (costume play) world she lives in. So Owen got to her house and she took one look at him and freaked out and changed her costume to the female character from Dr Who, Amy Pond. She just happened to have a wig appropriate for that, too! It made her night which in turn made Owen's night. It's always nice to be able to cheer up a friend! Then there they were in themed costumes ready for the candy collecting! They met up with some other friends and had a good night. I love this picture to pieces. Their costumes, their body language, all 8 years of their friendship shows through.Owen is lucky to have a friend like her who gets his quirks and plays along and I'm happy that her mom, Laura, and I have become such good friends over the years. We're so thankful to those special ladies and don't know what we'd do without them! <3
David and I stayed home and happily ate halloween candy instead of passing it out to kids because none came to the door. MORE FOR US! Actually, I'm going to have Owen drop off the rest in the teacher's lounge at school. Less for us! HA! It's been a mostly quiet and uneventful week otherwise and for that we are grateful!
Hope everyone had a safe and happy halloween!
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