Dave had another sleepy day for the most part. It's my birthday and I got to get out and run some errands with Rose while my Nana hung out with Dave (read: watched him sleep) When I got home he was up for a little while and ate some lunch (yay!) and chit chatted for a little bit. I got him all settled and let him rest up for the party.
I got some flowers for my birthday from a friend and from Dave's aunt, it really brightens up the place. Now I just have to keep them away from Bob, the cat. He LOVES flowers... in his mouth. HA! Naughty kitty.
Tonight my Dad stopped by for a few minutes to wish me a happy birthday and then my Mom and Nana came over. Mom took Owen to pick out thai food and she brought angel food cake, because a birthday isn't a birthday without cake! I woke Dave up and gave him some Dr Pepper and he had some dinner and cake with us. Probably more cake than dinner but a man has to have priorities. After everyone left we settled in for the evening and cuddled up to watch the Rose Bowl that's been sitting on the DVR for the last month. Normally football isn't for cuddling but we made an exception. I can't believe he stayed awake so long! What a wonderful birthday! Having him here with us and being able to spend such quality time together is everything I could have wished for.
I called the dr again and the nurse told me he was going to call at the end of the day but it's 11:00pm and he hasn't called. I'm guessing he's not going to today. Oh well. We're trying not to be frustrated but I'll be calling first thing in the morning... again... to see if we can get a hold of him. This is the problem with having a busy doctor, he's good at what he does from all that we've heard but he's ridiculously hard to get on the phone. It's a little disheartening. On the bright side we got notification from insurance saying that the IV chemo is pre-approved so theoretically we CAN do it... assuming we can get Dave out of the house and that the dr actually contacts us.
Owen has an appointment to get his braces adjusted tomorrow after school. Thankfully Nana is going to take him for me so I don't have to leave David. I'm glad he's maintaining some normalcy. Ooh he got his report card today, all A's except for one B. Awesome job! Especially considering everything that's going on at home. He's a trooper and we love him! 2 weeks until his 13th birthday. A teenager! ACK! ;)
I'm so thankful for the day we've had even though we didn't get every bit of info we wanted. I'm just thankful that we had the opportunity to spend quality time as a family. The outpouring of love from friends and family really means a lot to both of us. It helps David to know that while we're caring for him others are caring for us. Thanks everyone for the wonderful birthday wishes! <3
Tuesday, January 31, 2012
Monday, January 30, 2012
Someone's Having A Case of the Mondays
Today was a sleepy day. Not sure why but Dave was extraordinarily sleepy today and just couldn't quite wake up. His pain is pretty much under control with the morphine and the occasional advil and the nurse said he could cut back on the anti-seizure meds so that will help him not be quite so tired as well. I hope that works for him.
Right now we're trying to decide if he should stay on hospice or move to home health and if he should do chemo still (have calls in to the dr but he hasn't called back which is super frustrating) and if he can take the coumadin again and and and... Just a huge list of things we're unsure about right now. On top of that all the other things we have to get done or want to get done.
Tomorrow is my birthday, Yay! For my birthday I think I want some answers, I don't even mind if they aren't gift wrapped. ;)
I'm not sure if we'll be able to transport Dave to/from dr's visits and chemo treatments regardless of what the dr wants to do because even being jostled around today by the bath aide wore him out so much that he pretty much slept the whole rest of the day. I wish there was something I could do to give him more energy. If I knew I would certainly do it. So I'm letting him sleep and trying to take care of other things and stay busy and productive. I think the most productive thing I could have done is to take a nap though.
Right now we're trying to decide if he should stay on hospice or move to home health and if he should do chemo still (have calls in to the dr but he hasn't called back which is super frustrating) and if he can take the coumadin again and and and... Just a huge list of things we're unsure about right now. On top of that all the other things we have to get done or want to get done.
Tomorrow is my birthday, Yay! For my birthday I think I want some answers, I don't even mind if they aren't gift wrapped. ;)
I'm not sure if we'll be able to transport Dave to/from dr's visits and chemo treatments regardless of what the dr wants to do because even being jostled around today by the bath aide wore him out so much that he pretty much slept the whole rest of the day. I wish there was something I could do to give him more energy. If I knew I would certainly do it. So I'm letting him sleep and trying to take care of other things and stay busy and productive. I think the most productive thing I could have done is to take a nap though.
Sunday, January 29, 2012
Weekend Update
David has been progressing all weekend. He's very weak as you can imagine but he's starting to eat normal food (i.e. not broth and applesauce) and he's taking some of his meds by mouth again plus asking for meds that they had previously cut him off from. I keep checking with the nurses to find out if I can give him things like his coumadin and they're saying things like "there's no reason to give him that at this point" That's somewhat upsetting because if feels like they're saying they don't want him to prolong his life. That may not actually be what they're saying but I'm thinking that I'm going to be calling the dr first thing in the morning to find out what exactly we *should* be doing rather than what the nurses are saying.
Yesterday I got a massage, the first of 3, that my mom and Rose & Tim got me for my birthday (it's tuesday!) The lady comes to the house and everything! What a nice treat. Thanks! Yesterday we had family visit from out of town which was nice even though Dave was too tired to spend time with people and Tim and Rose held down the fort while I got my massage, then my brother Jaeger and his fiance Sara came over with little baby Gabriella. Our new niece! YAY! While Gabby was sleeping and Dave was awake we laid the baby on his chest to take a little nap. He needed his baby fix! It was really nice to be able to spend time alone with them and hang out. Jaeger played video games with Owen which O really liked since he's not all that keen on babies.
Today was the first quiet day we've had in a long time. We're on something of a routine and it was nice to just hang out and nap and talk and watch silly TV and relax. Seriously, yay for naps! We really love and appreciate the visits but we're also appreciating our quiet time as well.
It's a lot of work making sure we stay on schedule and I can't say I'm perfect but it's manageable. We're just trying to stay ahead of the pain and still keep him as healthy as possible. We're hoping he'll be up in the wheel chair soon but for now I'm just sitting him up in bed for short periods to try to adjust to being upright again.
Yesterday I got a massage, the first of 3, that my mom and Rose & Tim got me for my birthday (it's tuesday!) The lady comes to the house and everything! What a nice treat. Thanks! Yesterday we had family visit from out of town which was nice even though Dave was too tired to spend time with people and Tim and Rose held down the fort while I got my massage, then my brother Jaeger and his fiance Sara came over with little baby Gabriella. Our new niece! YAY! While Gabby was sleeping and Dave was awake we laid the baby on his chest to take a little nap. He needed his baby fix! It was really nice to be able to spend time alone with them and hang out. Jaeger played video games with Owen which O really liked since he's not all that keen on babies.
Today was the first quiet day we've had in a long time. We're on something of a routine and it was nice to just hang out and nap and talk and watch silly TV and relax. Seriously, yay for naps! We really love and appreciate the visits but we're also appreciating our quiet time as well.
It's a lot of work making sure we stay on schedule and I can't say I'm perfect but it's manageable. We're just trying to stay ahead of the pain and still keep him as healthy as possible. We're hoping he'll be up in the wheel chair soon but for now I'm just sitting him up in bed for short periods to try to adjust to being upright again.
Friday, January 27, 2012
Finding Balance
Today has been an adventure in patience. David slept pretty much all day but every time he was awake he was a little more communicative. The lucid moments were only a few minutes at a time but he is a totally different man than yesterday! Or rather he's just a very tired version of normal self. Outrageous change! In all honesty we didn't expect him to make it 24 hours and now he's doing much better.
I spent the day talking with our hospice nurses, my pharmacist uncle, tim's nurse sister. It's amazing that every person I talk to gives me a slightly different answer but they aren't contradictory so I feel like I'm getting as much information as I can possibly get. Especially since the hospice nurses have told me that it's going to take some trial and error (in the framework they gave me) to figure out what dose of what will work out best for him. The goal being keeping him comfortable and able to be aware of what's going on around him as much as possible.
I am having a bit of a struggle because I had to make a call to move to hospice because of his pain and inability to communicate yesterday. We were told they didn't think he would make it through the day and yet here he is. I know his condition could change again just as rapidly as it has been changing but for now he's ok... so now we're left wondering if that took chemo off the table. I don't think I really had any choice but I don't want it to screw up his chances of living as long as he can as comfortably as he can. It's probably not a big of a deal as I've made it out to be in my head, I just feel bad for having to make that decision without him.
He doesn't really remember anything about yesterday. That's likely from the Ativan that he was given for the seizures (he hasn't had one since 2:30 on thursday) so I had to explain it all to him. He was disappointed about being on hospice but when I apologized he said, "I trust you". No pressure, right? I just hope I made the right choice. If I have to fight for him to stay on chemo while on hospice I will. i don't know if I will win that fight but I'll fight it as long as he wants me to.
We've had people bringing dinners the last few nights, I can't tell you how appreciated that is. It's one less thing to worry about. We can use all the "less worry" we can get!
I spent the day talking with our hospice nurses, my pharmacist uncle, tim's nurse sister. It's amazing that every person I talk to gives me a slightly different answer but they aren't contradictory so I feel like I'm getting as much information as I can possibly get. Especially since the hospice nurses have told me that it's going to take some trial and error (in the framework they gave me) to figure out what dose of what will work out best for him. The goal being keeping him comfortable and able to be aware of what's going on around him as much as possible.
I am having a bit of a struggle because I had to make a call to move to hospice because of his pain and inability to communicate yesterday. We were told they didn't think he would make it through the day and yet here he is. I know his condition could change again just as rapidly as it has been changing but for now he's ok... so now we're left wondering if that took chemo off the table. I don't think I really had any choice but I don't want it to screw up his chances of living as long as he can as comfortably as he can. It's probably not a big of a deal as I've made it out to be in my head, I just feel bad for having to make that decision without him.
He doesn't really remember anything about yesterday. That's likely from the Ativan that he was given for the seizures (he hasn't had one since 2:30 on thursday) so I had to explain it all to him. He was disappointed about being on hospice but when I apologized he said, "I trust you". No pressure, right? I just hope I made the right choice. If I have to fight for him to stay on chemo while on hospice I will. i don't know if I will win that fight but I'll fight it as long as he wants me to.
We've had people bringing dinners the last few nights, I can't tell you how appreciated that is. It's one less thing to worry about. We can use all the "less worry" we can get!
The Wonders of Morphine
Yesterday morning at 6 I woke Dave up to move him around and give him his meds, we fell back to sleep and Owen said goodbye at 7:30 when he left for school and Dave was still sleeping. I drifted back to sleep and at 7:45 I woke up to Dave being in obvious pain but I couldn't get him to respond to me. He was moving around and making noise but was unable to talk so I made a couple of calls and got Rose to come over and the Home Health nurse on her way. Tim's mom is also a nurse and called me while I was waiting which really really helped me. She told me I needed to bypass home health and go straight to hospice so when the nurse got here that's what we did and the hospice nurse and social worker came out within a couple hours.
Since all the meds we got were pill form and David was in no condition to swallow anything the hospice nurse ordered liquid pain meds for us. A box of stuff was delivered and starting at 1pm he's been on Morphine for pain and Ativan for seizures, he's also still on steroids to keep any inflammation down. To my count he had at least 5 small, scary but nonviolent seizures but those stopped after giving him a good dose of Ativan.
It was very obvious all day that he could hear us even if he couldn't respond so we have just been talking to him. The nurse in the morning said he probably was pretty close to the end but as the day wore on into night he started being able to respond a little bit. Mostly just ya and no and slight head nods but it was encouraging.
Rose spent the night (worst reason for a slumber party imo) and we set alarms so we could be sure to stay on top of the dosing and moving him around to avoid bedsores. He slept so well all night! We moved the "hospital bed" up next to my side of the bed so I could have my hand on him all night. Every time we had to wake him up he seemed a little more with it. Early on when I would tell him I was giving him morphine he would bat me away and push his lips together but by this morning when I gave him the morphine he would help me and he even asked for it at some point. I think we may have finally gotten ahead of the pain.
Around 4 am he even asked for a drink of water, big difference from the man that woke me up yesterday because he was making sounds of pain. I was nervous because I didn't want him to choke on the water but I moved the bed up so he was mostly sitting and I can't very well deny a man of water!
I'm not really sure what happened. I talked to his neurologist's PA and she said that if it was the tumor he wouldn't have use of his arms which he does. I wondered if he had a stroke or something but he didn't have any classic stroke symptoms except that he couldn't talk. After everything we went through yesterday trying to find the right dose of the meds we have available to us I'm wondering if he was just in so much pain that he went into shock of some sort that triggered the seizures and made everything go down hill.
At this point he's on a good dose (not a huge dose but high for him) of morphine, .5ml every 1-2 hours, and he's super super groggy but he is talking a little more and said, "I love you" which is more words than he said at once coherently all day yesterday. We might have the dose a little high and now that we have the pain under control maybe we can lower that a little but we'll wait for the nurse to come before we adjust that, for right now I'm just thrilled that he isn't in any pain and that he's sleeping well and breathing well.
We had so many people here yesterday and Rose has been here basically since she woke up yesterday. I'm so grateful we have such amazing friends and family.
I'm hoping as the day progresses so will David. We're looking for that sweet spot between comfortable and lucid.
Since all the meds we got were pill form and David was in no condition to swallow anything the hospice nurse ordered liquid pain meds for us. A box of stuff was delivered and starting at 1pm he's been on Morphine for pain and Ativan for seizures, he's also still on steroids to keep any inflammation down. To my count he had at least 5 small, scary but nonviolent seizures but those stopped after giving him a good dose of Ativan.
It was very obvious all day that he could hear us even if he couldn't respond so we have just been talking to him. The nurse in the morning said he probably was pretty close to the end but as the day wore on into night he started being able to respond a little bit. Mostly just ya and no and slight head nods but it was encouraging.
Rose spent the night (worst reason for a slumber party imo) and we set alarms so we could be sure to stay on top of the dosing and moving him around to avoid bedsores. He slept so well all night! We moved the "hospital bed" up next to my side of the bed so I could have my hand on him all night. Every time we had to wake him up he seemed a little more with it. Early on when I would tell him I was giving him morphine he would bat me away and push his lips together but by this morning when I gave him the morphine he would help me and he even asked for it at some point. I think we may have finally gotten ahead of the pain.
Around 4 am he even asked for a drink of water, big difference from the man that woke me up yesterday because he was making sounds of pain. I was nervous because I didn't want him to choke on the water but I moved the bed up so he was mostly sitting and I can't very well deny a man of water!
I'm not really sure what happened. I talked to his neurologist's PA and she said that if it was the tumor he wouldn't have use of his arms which he does. I wondered if he had a stroke or something but he didn't have any classic stroke symptoms except that he couldn't talk. After everything we went through yesterday trying to find the right dose of the meds we have available to us I'm wondering if he was just in so much pain that he went into shock of some sort that triggered the seizures and made everything go down hill.
At this point he's on a good dose (not a huge dose but high for him) of morphine, .5ml every 1-2 hours, and he's super super groggy but he is talking a little more and said, "I love you" which is more words than he said at once coherently all day yesterday. We might have the dose a little high and now that we have the pain under control maybe we can lower that a little but we'll wait for the nurse to come before we adjust that, for right now I'm just thrilled that he isn't in any pain and that he's sleeping well and breathing well.
We had so many people here yesterday and Rose has been here basically since she woke up yesterday. I'm so grateful we have such amazing friends and family.
I'm hoping as the day progresses so will David. We're looking for that sweet spot between comfortable and lucid.
Wednesday, January 25, 2012
Home Sweet Home
Today was not without speed bumps but the bottom line is HE'S HOME! YAY!
As soon as he got home the cats all came in the bedroom to investigate and Freckles laid on the bed all stretched out with him and kept him company for hours. It's good to be home.
Of course because of the strange schedule David somehow got a bit dehydrated and his neck is hurting from being jostled around so much and he ended up with a migraine. Welcome home, here's a migraine! I got him pretty drugged up (safely drugged... if there is such a thing) and he's sleeping now. YAY FOR SLEEP!
Tomorrow the nurse from home health comes to check in on things and offer her expertise. I know we've already come so far but I feel like this journey has just begun and I've got a list in my head a mile long of things I know I need to do and learn but I just can't get them out in any kind of orderly fashion. Handy.
One kind of cool thing I realized today, we've had a large whiteboard hanging on the wall in our bedroom for years. I know, totally classy decor. It's an excellent way to keep track of med schedules and things like that, kind of like they have in the hospital. I never knew it would serve a functional purpose other than drawing pictures and jotting down random shopping list items. I'm more organized in some regards than I ever thought I'd be and in other regards... yeah... not so much!
I'm super tired so I'm cutting this short again tonight but I wanted to say a quick thank you to Tim and Rose for everything they've been doing lately. You're really kind of orchestrating EVERYTHING I don't have time/energy/know-how to do and we love you both for all of it. You're finding us resources for things and people we didn't even know we needed resources for. You pretty much rock and stuff. ;) Thanks!
As soon as he got home the cats all came in the bedroom to investigate and Freckles laid on the bed all stretched out with him and kept him company for hours. It's good to be home.
Of course because of the strange schedule David somehow got a bit dehydrated and his neck is hurting from being jostled around so much and he ended up with a migraine. Welcome home, here's a migraine! I got him pretty drugged up (safely drugged... if there is such a thing) and he's sleeping now. YAY FOR SLEEP!
Tomorrow the nurse from home health comes to check in on things and offer her expertise. I know we've already come so far but I feel like this journey has just begun and I've got a list in my head a mile long of things I know I need to do and learn but I just can't get them out in any kind of orderly fashion. Handy.
One kind of cool thing I realized today, we've had a large whiteboard hanging on the wall in our bedroom for years. I know, totally classy decor. It's an excellent way to keep track of med schedules and things like that, kind of like they have in the hospital. I never knew it would serve a functional purpose other than drawing pictures and jotting down random shopping list items. I'm more organized in some regards than I ever thought I'd be and in other regards... yeah... not so much!
I'm super tired so I'm cutting this short again tonight but I wanted to say a quick thank you to Tim and Rose for everything they've been doing lately. You're really kind of orchestrating EVERYTHING I don't have time/energy/know-how to do and we love you both for all of it. You're finding us resources for things and people we didn't even know we needed resources for. You pretty much rock and stuff. ;) Thanks!
Tuesday, January 24, 2012
Short and Sweet
Today I'm having a hard time putting sentences together and keeping my thoughts clear. Not in a bad way, just in a busy way!
Today we found out David is coming home tomorrow! TOMORROW! Always with that word! Our fingers are crossed that they mean it for real! Now I have to coordinate his discharge info, meds, equipment rental/delivery/setup/training, david delivery *snicker*, care coordination. We decided, with the urging of the oncologist, that we're going to do home health with a bridge to hospice which as I understand it means home health with more of the services that hospice allows. Or stated otherwise... hospice with chemo and physical therapy. We may be proven otherwise but that's what we gather from everything that was said. It would be easier to navigate this path if we had fewer people helping to coordinate but I suppose they each have their niche to fill and theoretically they work well together. If all goes as planned David will be happily watching the DVR'd Rose Bowl game tomorrow night.. the very game that was on when he was admitted to the hospital 22 days ago. TWENTY TWO DAYS AGO! Holy smokes. That makes me tired just thinking about it.
No dramatic stories tonight, just time to clean a bit then pass out and get ready for a huge day tomorrow. Please don't let anything get in the way of making this happen.
Today we found out David is coming home tomorrow! TOMORROW! Always with that word! Our fingers are crossed that they mean it for real! Now I have to coordinate his discharge info, meds, equipment rental/delivery/setup/training, david delivery *snicker*, care coordination. We decided, with the urging of the oncologist, that we're going to do home health with a bridge to hospice which as I understand it means home health with more of the services that hospice allows. Or stated otherwise... hospice with chemo and physical therapy. We may be proven otherwise but that's what we gather from everything that was said. It would be easier to navigate this path if we had fewer people helping to coordinate but I suppose they each have their niche to fill and theoretically they work well together. If all goes as planned David will be happily watching the DVR'd Rose Bowl game tomorrow night.. the very game that was on when he was admitted to the hospital 22 days ago. TWENTY TWO DAYS AGO! Holy smokes. That makes me tired just thinking about it.
No dramatic stories tonight, just time to clean a bit then pass out and get ready for a huge day tomorrow. Please don't let anything get in the way of making this happen.
Monday, January 23, 2012
Navigation
David and I have always liked to go driving. It started with hour long trips to Olive Garden in Salem because we didn't have one here or a quick trip to the beach to watch the sunset. It turned into day trips to Crater Lake or up a scenic highway one last time before the snow sets in. We used to highlight all the roads we have been on and take alternate roads just to say we have gone down them. He drives and I navigate. I tell him which road to take to get where he wants to go, I prepare and hand him food so he can concentrate on the road without having to stop and we talk so he doesn't get sleepy... like I do.
He seems to be in the driver's seat again and while he sits there knowing what his eventual destination is I'm busy being the navigator, figuring out logistics, feeding him and talking to him... not so much to keep him awake as it is to keep him focused on the road right in front of him instead of thinking about what it will be like when he "arrives".
The care manager came in today to talk to us about home health care. She asked us what agency we'd like to use. Really? I didn't know we had a choice! She brought in a list of providers for us to look at. That would have been really useful information to have Friday so we could have spent the weekend doing research. Whatever, we didn't and there's nothing we can do about that so I did some calling around and decided on a couple to check out. Just as I'm about to pull my hair out Tim and Rose (the Wolfe's who are awesome!) let us know that Tim's sister worked in home health and hospice and wanted to talk to us. Perfect!
She really helped us understand a little more about the difference between home health and hospice. We're leaning towards hospice being closer to what we actually need as they offer more services but they don't always accept people who are taking chemo and the Drs want to keep him on it for the time being. They don't consider it curative which is the very definition of hospice. Hospice is for palliative treatment for comfort and often end of life type support, nothing curative. If chemo is palliative.... this is where navigating gets a little tricky. I hope the way is made clear very soon.
He seems to be in the driver's seat again and while he sits there knowing what his eventual destination is I'm busy being the navigator, figuring out logistics, feeding him and talking to him... not so much to keep him awake as it is to keep him focused on the road right in front of him instead of thinking about what it will be like when he "arrives".
The care manager came in today to talk to us about home health care. She asked us what agency we'd like to use. Really? I didn't know we had a choice! She brought in a list of providers for us to look at. That would have been really useful information to have Friday so we could have spent the weekend doing research. Whatever, we didn't and there's nothing we can do about that so I did some calling around and decided on a couple to check out. Just as I'm about to pull my hair out Tim and Rose (the Wolfe's who are awesome!) let us know that Tim's sister worked in home health and hospice and wanted to talk to us. Perfect!
She really helped us understand a little more about the difference between home health and hospice. We're leaning towards hospice being closer to what we actually need as they offer more services but they don't always accept people who are taking chemo and the Drs want to keep him on it for the time being. They don't consider it curative which is the very definition of hospice. Hospice is for palliative treatment for comfort and often end of life type support, nothing curative. If chemo is palliative.... this is where navigating gets a little tricky. I hope the way is made clear very soon.
Tomorrow... the song
Today marks 20 days in hospitals. It all seems so incredibly fast even though it's been nearly an entire month. It's fast and slow at the same time, does that even make sense? It feels like we're always waiting for tomorrow but I think the quality of that wait time has changed. It used to feel frantic and like tomorrow would never come but now it feels like I barely remember yesterday so it's a good thing I wrote down what was going on. I can't tell you how many times I've looked at my posts to remind myself on which day something happened.
This weekend was busy. So busy in fact that I don't feel like we accomplished much except surviving which given the circumstances is a notable accomplishment. David's progress with the arm movement seems to have slowed to a halt although today he was able to feed himself a bit, flip channels with the remote and talk on the phone to his sister. Really it's the first time he's talked on the phone this week so that's an accomplishment in and of itself. He's not generally one for the phone to begin with. I don't know if the strides are improvement with the nerves or just learning more muscle control.
Today the visits were family and best friends. I've been saying I don't know what we'd do without this core group of supporters but really I do know.... and it's not pretty. ;)
My parents each brought us food from Addi's (our favorite local diner) this weekend to help stave away the doldrums of 20 days of hospital food. Thank you! Addi even tossed in goodies she knows we like and brought a little sunshine to our day. You go above and beyond, girl! <3 Thanks.
We had some little visitors who lifted our spirits. David wasn't feeling confident enough in his dexterity to hold our tiny niece so I laid her on his chest for a minute so he could absorb some of her serious amounts of cuteness! My bff's little girl looked out the window with me and we talked about all the things outside and my little brother kept us entertained as usual. I saw my niece again later at my Dad's house and got to spend a little more cuddle time with her. Watching a baby sleep is, in my opinion, one of life's simplest pleasures. The little faces and the noises and ... ahhhh, my heart is happy. We had a little eye contact bonding time and I'm so thankful at the generosity of my brother and Sara sharing her with all of us. Having her really was their best idea ever! *high five*
Owen had a good and busy weekend. I'm fairly certain he'd almost rather live there than here at this point. He misses us but he doesn't miss the situation. I don't blame him one little bit.
Tomorrow David and I will meet with the home care coordinator. I have a million questions that I hope they can answer. I'm eager and hopeful and want to know what I can do right now to get this ball rolling. I feel like every day we're learning so much and everything we learn just sparks up so many more questions.
For some reason I have the song "Tomorrow" from Annie stuck in my head.... (now you do too, you're welcome)
"You gotta hang on til tomorrow, come what may."
This weekend was busy. So busy in fact that I don't feel like we accomplished much except surviving which given the circumstances is a notable accomplishment. David's progress with the arm movement seems to have slowed to a halt although today he was able to feed himself a bit, flip channels with the remote and talk on the phone to his sister. Really it's the first time he's talked on the phone this week so that's an accomplishment in and of itself. He's not generally one for the phone to begin with. I don't know if the strides are improvement with the nerves or just learning more muscle control.
Today the visits were family and best friends. I've been saying I don't know what we'd do without this core group of supporters but really I do know.... and it's not pretty. ;)
My parents each brought us food from Addi's (our favorite local diner) this weekend to help stave away the doldrums of 20 days of hospital food. Thank you! Addi even tossed in goodies she knows we like and brought a little sunshine to our day. You go above and beyond, girl! <3 Thanks.
We had some little visitors who lifted our spirits. David wasn't feeling confident enough in his dexterity to hold our tiny niece so I laid her on his chest for a minute so he could absorb some of her serious amounts of cuteness! My bff's little girl looked out the window with me and we talked about all the things outside and my little brother kept us entertained as usual. I saw my niece again later at my Dad's house and got to spend a little more cuddle time with her. Watching a baby sleep is, in my opinion, one of life's simplest pleasures. The little faces and the noises and ... ahhhh, my heart is happy. We had a little eye contact bonding time and I'm so thankful at the generosity of my brother and Sara sharing her with all of us. Having her really was their best idea ever! *high five*
Owen had a good and busy weekend. I'm fairly certain he'd almost rather live there than here at this point. He misses us but he doesn't miss the situation. I don't blame him one little bit.
Tomorrow David and I will meet with the home care coordinator. I have a million questions that I hope they can answer. I'm eager and hopeful and want to know what I can do right now to get this ball rolling. I feel like every day we're learning so much and everything we learn just sparks up so many more questions.
For some reason I have the song "Tomorrow" from Annie stuck in my head.... (now you do too, you're welcome)
"You gotta hang on til tomorrow, come what may."
Sunday, January 22, 2012
Stay Plucky!
It's already Saturday? When did that happen? This whole week has been one long day.
Today I gave in and asked for some help cleaning the garage. My longtime BFF from school directed the Nanas in cleaning our garage. Well, I should really say restacking our garage because it's not exactly clean but there is space and that was really the immediate need. David often tells me that I don't necessarily clean so much as I move piles around. (He's right but don't tell him I said that) They're my kind of "cleaners" All jokes aside it's a big relief to have some space in there to move furniture out of the living room in prep for Dave being able to come home.
The palliative care dr stopped by for a second to let us know that on friday she put in some orders for a hospital bed to be delivered and to find out about coordinating care. We won't know anything until monday or tuesday when we'll go over the whole shebang. Fingers crossed. For now we're just along for the ride.
Dave was doing fairly well today, there seems to be slow gradual progression of mobility in the arms/hands and he says the pins and needles feeling isn't quite as bad in his right arm. He practiced his dexterity a lot, practice makes perfect! His energy level is not as high as it was a few days ago but there could be a million reasons for that. Chemo, antibiotics, lack of sleep, reduction of steroids, being jostled around constantly, having been laying down for 4 whole days. He can sit up in bed if I sit the back of the bed up but since he has no core strength he can't really hold himself in that position for long without slumping down and that gets uncomfortable. I'm still helping him eat at mealtimes (and yes I'm eating also since everyone keeps asking me) and today I was noticing that he has pretty good mobility even though he isn't (wasn't?) left handed and he could probably start to do more for himself when it comes to meals. I think he just likes it when I do it. hahaha. I can't begrudge him that. Take what you can get, man!
We had a slower steady stream of visitors today which was nice. We saw a few unexpected and very much appreciated faces who came to offer support and to share their lives with us which is always nice. Even though we're going through this less than ideal situation we are aware that others have their own trials as well. Our current adventure doesn't take away from what anyone else is going through and we are glad that you still share your lives, both good and bad aspects, with us as well. It's good for us to keep things in perspective and part of that perspective is that life goes on.
Some of Owen's friends got together to go to a movie so that was a good distraction for him. THANK YOU! Yesterday I brought him a sleeping bag and his pillow from home for his little slumber party with the wolfe family and he texted me first thing to say thanks for that because it helped him sleep like a brick. I think I need to get my hands on that pillow and sleeping bag! 3-4 hours of sleep a night just isn't going to cut it! I got lectured this morning about how I should take something to help me sleep but I don't feel right about doing that right now. If he needs me in the middle of the night I don't want to be drugged up. Maybe after he comes home and I don't necessarily have to DRIVE anywhere to take care of him. Did I mention I hope that's soon.. I don't think I did today.
Once upon a time someone I look up to told me I'm plucky and to stay that way. I had never thought of myself as such but in time I grew to embrace the title. Through this whole thing I've been telling myself to stay plucky. My dear dear amazing friends from all over the country have been sending me cards and love with notes and reminders about staying plucky. I've even joked that I should spend my time the hospital room cross stitching a little picture that says "Stay Plucky". You know... in all my free time. ;)
Tonight I got home and got the mail, first time in a few days, and had a large envelope from a dear friend. In the envelope was a whole bunch of purple rubber "livestrong" type bracelets stamped with "STAY PLUCKY!" I admit that when I figured out what they were I took a minute to cry about it, not sad tears but because I am so touched. I'm going to wear them all up and down my arms like Madonna in the 80s. (no I'm not. lol...) I AM going to wear it and share them with others and encourage people to remember that a sense of humor and a solid support group can take you a lot further than you ever thought you could go.
Today I gave in and asked for some help cleaning the garage. My longtime BFF from school directed the Nanas in cleaning our garage. Well, I should really say restacking our garage because it's not exactly clean but there is space and that was really the immediate need. David often tells me that I don't necessarily clean so much as I move piles around. (He's right but don't tell him I said that) They're my kind of "cleaners" All jokes aside it's a big relief to have some space in there to move furniture out of the living room in prep for Dave being able to come home.
The palliative care dr stopped by for a second to let us know that on friday she put in some orders for a hospital bed to be delivered and to find out about coordinating care. We won't know anything until monday or tuesday when we'll go over the whole shebang. Fingers crossed. For now we're just along for the ride.
Dave was doing fairly well today, there seems to be slow gradual progression of mobility in the arms/hands and he says the pins and needles feeling isn't quite as bad in his right arm. He practiced his dexterity a lot, practice makes perfect! His energy level is not as high as it was a few days ago but there could be a million reasons for that. Chemo, antibiotics, lack of sleep, reduction of steroids, being jostled around constantly, having been laying down for 4 whole days. He can sit up in bed if I sit the back of the bed up but since he has no core strength he can't really hold himself in that position for long without slumping down and that gets uncomfortable. I'm still helping him eat at mealtimes (and yes I'm eating also since everyone keeps asking me) and today I was noticing that he has pretty good mobility even though he isn't (wasn't?) left handed and he could probably start to do more for himself when it comes to meals. I think he just likes it when I do it. hahaha. I can't begrudge him that. Take what you can get, man!
We had a slower steady stream of visitors today which was nice. We saw a few unexpected and very much appreciated faces who came to offer support and to share their lives with us which is always nice. Even though we're going through this less than ideal situation we are aware that others have their own trials as well. Our current adventure doesn't take away from what anyone else is going through and we are glad that you still share your lives, both good and bad aspects, with us as well. It's good for us to keep things in perspective and part of that perspective is that life goes on.
Some of Owen's friends got together to go to a movie so that was a good distraction for him. THANK YOU! Yesterday I brought him a sleeping bag and his pillow from home for his little slumber party with the wolfe family and he texted me first thing to say thanks for that because it helped him sleep like a brick. I think I need to get my hands on that pillow and sleeping bag! 3-4 hours of sleep a night just isn't going to cut it! I got lectured this morning about how I should take something to help me sleep but I don't feel right about doing that right now. If he needs me in the middle of the night I don't want to be drugged up. Maybe after he comes home and I don't necessarily have to DRIVE anywhere to take care of him. Did I mention I hope that's soon.. I don't think I did today.
Once upon a time someone I look up to told me I'm plucky and to stay that way. I had never thought of myself as such but in time I grew to embrace the title. Through this whole thing I've been telling myself to stay plucky. My dear dear amazing friends from all over the country have been sending me cards and love with notes and reminders about staying plucky. I've even joked that I should spend my time the hospital room cross stitching a little picture that says "Stay Plucky". You know... in all my free time. ;)
Tonight I got home and got the mail, first time in a few days, and had a large envelope from a dear friend. In the envelope was a whole bunch of purple rubber "livestrong" type bracelets stamped with "STAY PLUCKY!" I admit that when I figured out what they were I took a minute to cry about it, not sad tears but because I am so touched. I'm going to wear them all up and down my arms like Madonna in the 80s. (no I'm not. lol...) I AM going to wear it and share them with others and encourage people to remember that a sense of humor and a solid support group can take you a lot further than you ever thought you could go.
Saturday, January 21, 2012
Just keep swimming
Last night I spent the night at the hospital. Sheesh! I thought alarm clocks were bad... at 5:30 the IV pump starting going off (horribly loud alarm that kept getting louder) because someone had set it to a timer instead of to when the bag ran out and there was no one to be found! That was... annoying, to say the least. In retrospect it was a little funny because apparently there's a little button that says "silence" on the pump and I could have pushed it if I had seen it. My eyes were so blurry. You'd better believe I know where that button is now! Not a great way to start the day but thankfully we got back to sleep for a little while longer.
David did pretty well today, no noticeable negative side effects from chemo which is nice. I think he was really worn out but he was a trooper and handled all the visits like a champ. The nurse we had this morning, same nurse we've had during the day since we got back to the hospital, pulled me aside and said that social work wants to talk to us about in home care and hospice care but they didn't want to interrupt when we had so many visitors. I asked him not to wait and that talking to those people is a priority for us so pull me out at any time or kick everyone out temporarily because that's information we need to have sooner than later. The oncologist sent over a palliative care doctor to start the ball rolling on that. She talked to us about our options and the fact that nothing was going to change over the weekend but that by early next week we'd have a plan. We want him home, I've noticed a theme to these blogs.
He continues to regain a little movement and control over his arms and hands. We're not sure if it's due to the chemo or the steroids but we don't really care as long as something is working to slow the damage. The doctors don't want us to get our hopes up too high but they like the changes they've seen. We're hoping to have a little more time with him. The palliative care doctor said she wants to make sure that he gets home with time to enjoy being home and not wait until the last possible second and then be home for a day before he dies, or worse yet, die in the hospital because we didn't get a plan together. They don't know that it would be that quick but our motto has been to plan for the worst and hope for the best. She said that's their motto as well and she was glad to hear us say it first.
David's Aunt visited and from what I heard she noticed a man in the hallway with a cello and sent him in to see David. I had to run down to the car to get something for Owen. When I got back Dave was resting peacefully listening to the cello music in bed, I wonder if it reminded him of when he played in school. I hope it helped him rejuvenate a bit, he didn't really get a chance to nap, which might be ok with him so he sleeps better at night!
Tonight I talked to a friend who is going out of town. I told her to have a good weekend and she said the same back then kind of made a sad sound like she wondered if she should have said that all things considered. I told her that we WILL have the best weekend we can have, no doubt! She agreed.
Here's to hoping that the weekend brings more progress and less RAIN! I mentioned early on in a blog about the fog and how the weather was reflecting what was going on in our lives. I still find that to be true. When he moved to rehab it was only for a couple of days, it had gotten VERY cold and there was snow. A fresh start, a transition, new ground. The weather started getting worse then through the night and the morning when things took a turn for the worse there was a downpour. I had to drive 40 mph down the freeway to rehab because it was raining so hard that no one was going the speed limit. After that really terrible day of rain it's been kind of a constant liquid sunshine, there's flooding and some mayhem and everyone is just dealing with it the best they can. Normally they tell you not to swim in flood waters because it's can be dangerous. You don't want to get pulled under by a current or exposed to potential toxins. We're doing an awful lot of swimming lately.
Just keep swimming.
Thursday, January 19, 2012
Strength in Numbers
Today was a good long day. Bittersweet and draining in a lot of ways but good.
When Owen and I arrived this morning we found that David had regained a slight amount of movement in each arm. Not back to normal by any means but a slight improvement, probably from the steroids. He also got a really good night sleep. I take full credit for that because I brought him his memory foam pillow to help support his aching neck. (I'm incredibly modest... hehe) The oncologist came in this morning to follow up with us and gave us much the same talk that the neurologist gave us the night before. He even called a friend of mine who is a neuro-oncologist to consult which helped ease my mind a bit just because someone I am familiar with could give me news in a slightly different way than our doctors have delivered it.
What it boils down to is that they started a 2nd type of chemo today, Avastin (yarr! That's very piratey) It's an IV chemo that they can give once every 2 weeks. As I understand it it stops capillary growth thus ending/slowing the blood supply to the tumor. It was a concern that he has a biopsy wound from Jan 4th and they normally wait 28 days after surgery because it stops the wound from healing but the wound has mostly healed and they felt that this is a last ditch kind of effort with meds and it's worth the risk to potentially prolong his life.
That's hard to say and hard to think, but this is our reality right now. It's scary and unknown and we're acutely aware of the impact this is having on others as well as what it's putting us through. There is a slight possibility that the tumor could shrink a little but we have been told numerous times to remember this isn't curable and this is a temporary fix. We will take every extra second with him we can get as long as it's reasonable and he's comfortable. The last thing we want is to make him suffer unnecessarily.
Today Dr Hauck, our neuro, spoke about some options. Depending on how treatment goes (no time frame mentioned on the wait and see) he says we can make plans for every option. One end of the spectrum being rehab again to get what's left of his coordination trained so he can come home and the other end being hospice care at home. Either way the goal is to be home in as safe a way as possible. We have to see how those options pan out. As nice as this hospital is and as amazing as this staff has been we're pretty much over it.
Today we had a steady flow of visitors. Parents, siblings, cousins, aunts, uncles, nieces, friends, coworkers both past and current. It really is overwhelming when the impact you've had on other people is paraded right there in front of you. Most people don't get to see that. I'm a firm believer that you get what you give. This experience has proven that to me in more ways than I can count.
I feel a little bad when people who have just found out come in the room and we're kind of joking around and being very matter of fact about things that are hard to hear. We try to keep in mind that before I post or before we have visitors we've had a little time to process this stuff. Please don't feel bad for being emotional, we have our moments too. Plenty of them. We joke because it's a coping mechanism and laughing feels good. Don't be afraid to laugh with us.
My mom and grandma (hereto known as "the nanas") took down our christmas lights today. I scolded them not to get on the roof as I'm sure our homeowners insurance has a "no nanas on the roof" clause. They managed to take them down using a pole and averting danger! Thank you for taking that load off our minds.
Tonight I'm staying at the hospital and Owen is staying with his Wolfe family. *snicker* (my son is being raised by wolfes!). I hate to be away from him but I want to give him his space, and there are times when I feel the need to not leave Dave's side. Dave says he is comforted when I'm here but he may not be so happy about that in the morning when he realizes i didn't bring a change of clothes. HA! So um...sorry to everyone who visits on friday. ;)
I've been reading all the well wishes I've gotten on facebook/emails/text/calls to Dave. We're grateful beyond words.
When Owen and I arrived this morning we found that David had regained a slight amount of movement in each arm. Not back to normal by any means but a slight improvement, probably from the steroids. He also got a really good night sleep. I take full credit for that because I brought him his memory foam pillow to help support his aching neck. (I'm incredibly modest... hehe) The oncologist came in this morning to follow up with us and gave us much the same talk that the neurologist gave us the night before. He even called a friend of mine who is a neuro-oncologist to consult which helped ease my mind a bit just because someone I am familiar with could give me news in a slightly different way than our doctors have delivered it.
What it boils down to is that they started a 2nd type of chemo today, Avastin (yarr! That's very piratey) It's an IV chemo that they can give once every 2 weeks. As I understand it it stops capillary growth thus ending/slowing the blood supply to the tumor. It was a concern that he has a biopsy wound from Jan 4th and they normally wait 28 days after surgery because it stops the wound from healing but the wound has mostly healed and they felt that this is a last ditch kind of effort with meds and it's worth the risk to potentially prolong his life.
That's hard to say and hard to think, but this is our reality right now. It's scary and unknown and we're acutely aware of the impact this is having on others as well as what it's putting us through. There is a slight possibility that the tumor could shrink a little but we have been told numerous times to remember this isn't curable and this is a temporary fix. We will take every extra second with him we can get as long as it's reasonable and he's comfortable. The last thing we want is to make him suffer unnecessarily.
Today Dr Hauck, our neuro, spoke about some options. Depending on how treatment goes (no time frame mentioned on the wait and see) he says we can make plans for every option. One end of the spectrum being rehab again to get what's left of his coordination trained so he can come home and the other end being hospice care at home. Either way the goal is to be home in as safe a way as possible. We have to see how those options pan out. As nice as this hospital is and as amazing as this staff has been we're pretty much over it.
Today we had a steady flow of visitors. Parents, siblings, cousins, aunts, uncles, nieces, friends, coworkers both past and current. It really is overwhelming when the impact you've had on other people is paraded right there in front of you. Most people don't get to see that. I'm a firm believer that you get what you give. This experience has proven that to me in more ways than I can count.
I feel a little bad when people who have just found out come in the room and we're kind of joking around and being very matter of fact about things that are hard to hear. We try to keep in mind that before I post or before we have visitors we've had a little time to process this stuff. Please don't feel bad for being emotional, we have our moments too. Plenty of them. We joke because it's a coping mechanism and laughing feels good. Don't be afraid to laugh with us.
My mom and grandma (hereto known as "the nanas") took down our christmas lights today. I scolded them not to get on the roof as I'm sure our homeowners insurance has a "no nanas on the roof" clause. They managed to take them down using a pole and averting danger! Thank you for taking that load off our minds.
Tonight I'm staying at the hospital and Owen is staying with his Wolfe family. *snicker* (my son is being raised by wolfes!). I hate to be away from him but I want to give him his space, and there are times when I feel the need to not leave Dave's side. Dave says he is comforted when I'm here but he may not be so happy about that in the morning when he realizes i didn't bring a change of clothes. HA! So um...sorry to everyone who visits on friday. ;)
I've been reading all the well wishes I've gotten on facebook/emails/text/calls to Dave. We're grateful beyond words.
Wednesday, January 18, 2012
The Longest Day
Today was a day we've been dreading. David was moved back to Riverbend from the Rehab Center because he lost feeling in his arms. His left arm has a little bit of movement in the elbow/shoulder but no movement in the hand and his right arm is completely immobile. The Dr's moved him back to the hospital and did a series of MRIs.
While we were waiting to be transferred David asked me to call his parents and ask them to come which is something outside of his normal character. They were in portland visiting and came down immediately with David's sister Diana and her husband Eric. My Dad also came to the hospital to make sure I ate and Owen went home with my Step-mom after school. I'm thankful that all those people were there so that I didn't have to explain to everyone, especially his parents, what was happening and they were given the opportunity to talk with our doctor and ask all their questions as well.
After getting all the MRI results and consulting with numerous doctors regarding the findings the Dr came in to talk to our whole crew of people. After MUCH discussion about what they had ruled out (me thinking: get to the point!) he said that he tumor has grown beyond the reach of the radiation so that's no longer a treatment option. The tumor has moved up his spine into the neck up to C2. If it goes any further up it will cut off his respiration. It's extremely aggressive and he suggested that it may be Grade 4 but that they may not have gotten the part of the tumor in the biopsy that was grade 4 so it only showed up as grade 3.
They want David to take the chemo drugs he got in the mail today (finally) and tomorrow they're going to add a chemo treatment to that regime, the same chemo his brother is on but in pill form from what I understand. They also upped his steroid dose to 20mg up from the 1mg they had gotten down to while trying to wean him off them steroids. The steroids should help ease some swelling... if in fact swelling is causing his problems. If it's just the tumor and not any additional swelling then it won't help. The Dr said if the chemo meds make him too sick it won't be worth doing in which case they will just do everything they can to make him comfortable.
I went in the hall to talk to the dr after he left and I asked him some pointed questions about things like will we see cognitive changes in him before the respiratory problems, like will it grow into his brain. He basically said that no, the respiratory system will shut down before that happens. In some way that's a relief to both of us. I didn't ask "how long" because he just doesn't know but he kept saying he's concerned which is never good and I asked about how long we could wait before telling people to come see him. He said very directly, "don't wait" I immediately asked for Owen to be brought to us. After talking with Owen he asked if I could take him home tonight. I wish I could do more for him but I figured that was a little thing I could do. I checked with the nurses and David will be fine and they have instructions to call me if ANYTHING changes. Anything. Owen and I are going to spend the day with David tomorrow and we're expecting a lot of visitors. Don't let that deter you. We don't know what will happen and I want everyone to know that they shouldn't wait. I'm not saying that I think he has 24 hours or anything, we haven't given up, but I don't want anyone to regret not saying whatever they want to say because they were waiting to see how the remaining treatment goes.
We both want to say that we couldn't make it through this without everyone who has been supporting us from those here in town to those all around the country who have reached out in ways we never could have imagined. Your love and support is the only thing really holding us up. We keep assuring Owen that no matter what happens we're going to be ok and we had a lot of really difficult discussions tonight and I'm sure we'll have more in the very near future.
Not that I don't appreciate everyone but I especially want to thank my sister-in-law, Ricki. Her husband, David's brother, has had terminal cancer for 3 years and her experience, love and support has guided me in a much hastened crash course in wife/mother survival mode. Thanks for all the advice and tremendous amounts of love.
While we were waiting to be transferred David asked me to call his parents and ask them to come which is something outside of his normal character. They were in portland visiting and came down immediately with David's sister Diana and her husband Eric. My Dad also came to the hospital to make sure I ate and Owen went home with my Step-mom after school. I'm thankful that all those people were there so that I didn't have to explain to everyone, especially his parents, what was happening and they were given the opportunity to talk with our doctor and ask all their questions as well.
After getting all the MRI results and consulting with numerous doctors regarding the findings the Dr came in to talk to our whole crew of people. After MUCH discussion about what they had ruled out (me thinking: get to the point!) he said that he tumor has grown beyond the reach of the radiation so that's no longer a treatment option. The tumor has moved up his spine into the neck up to C2. If it goes any further up it will cut off his respiration. It's extremely aggressive and he suggested that it may be Grade 4 but that they may not have gotten the part of the tumor in the biopsy that was grade 4 so it only showed up as grade 3.
They want David to take the chemo drugs he got in the mail today (finally) and tomorrow they're going to add a chemo treatment to that regime, the same chemo his brother is on but in pill form from what I understand. They also upped his steroid dose to 20mg up from the 1mg they had gotten down to while trying to wean him off them steroids. The steroids should help ease some swelling... if in fact swelling is causing his problems. If it's just the tumor and not any additional swelling then it won't help. The Dr said if the chemo meds make him too sick it won't be worth doing in which case they will just do everything they can to make him comfortable.
I went in the hall to talk to the dr after he left and I asked him some pointed questions about things like will we see cognitive changes in him before the respiratory problems, like will it grow into his brain. He basically said that no, the respiratory system will shut down before that happens. In some way that's a relief to both of us. I didn't ask "how long" because he just doesn't know but he kept saying he's concerned which is never good and I asked about how long we could wait before telling people to come see him. He said very directly, "don't wait" I immediately asked for Owen to be brought to us. After talking with Owen he asked if I could take him home tonight. I wish I could do more for him but I figured that was a little thing I could do. I checked with the nurses and David will be fine and they have instructions to call me if ANYTHING changes. Anything. Owen and I are going to spend the day with David tomorrow and we're expecting a lot of visitors. Don't let that deter you. We don't know what will happen and I want everyone to know that they shouldn't wait. I'm not saying that I think he has 24 hours or anything, we haven't given up, but I don't want anyone to regret not saying whatever they want to say because they were waiting to see how the remaining treatment goes.
We both want to say that we couldn't make it through this without everyone who has been supporting us from those here in town to those all around the country who have reached out in ways we never could have imagined. Your love and support is the only thing really holding us up. We keep assuring Owen that no matter what happens we're going to be ok and we had a lot of really difficult discussions tonight and I'm sure we'll have more in the very near future.
Not that I don't appreciate everyone but I especially want to thank my sister-in-law, Ricki. Her husband, David's brother, has had terminal cancer for 3 years and her experience, love and support has guided me in a much hastened crash course in wife/mother survival mode. Thanks for all the advice and tremendous amounts of love.
Tuesday, January 17, 2012
Zombie days
It seems like we're having one good day then one not so good day. A short term goal for us is to have 2 good days for every bad day! Baby steps. Today David was a little like a zombie. He got about 2 hours of sleep last night then a full day with 3+ hours of physical and occupational therapy and a couple other meetings and radiation. He's barely functioning and is kind of zombieing through the day. He's back at the rehab facility now and getting as many pain meds as they can dish out to him. He's trying to stay away from the narcotics because they don't do a whole lot for his pain, they just make him care a little less but the dr's are pushing it a little bit because they don't want him to suffer and they NEED him to rest. His neck and shoulders are super sore from all the work he's been putting in. His neck wasn't all that flexible to begin with but laying down so much (mandated bedrest) has caused his range of motion in the neck and shoulders to be even more limited. They've started him doing stretches now so that should ease up soon.
Day two of radiation went a bit faster than day one. As they get the routine down it will go even faster which is nice. The quicker he can get in and out of there the better!
I finally got the mail order pharmacy to push through the prescription (bout time!) so he should have his chemo meds tomorrow. He's eager to start which again is odd in the grand scheme of things but in this situation I think it's probably normal. Let's get this wagon train a movin!
The doctors/nurses/therapists have meetings about each patient on tuesdays where they assess where the patient is in their recovery and plan out goals based on patient input and dr/therapist recommendations. They had their first meeting of this sort today and have designated David a T8 paraplegic (time will tell if that will change or not) and have set a tentative go home date for Feb 10th. Oy! That puts him at 4 weeks in rehab. Not what we were hoping for but the goal they set is for him to be primarily independent when he gets home. It feels like a very very long road from now but I suppose everyone feels that way. A guy was leaving the day we got there after recovering from a stroke. He said he was there 30 days and it flew by really fast. We're hoping that's the case. There's a possibility he could come home sooner if they can get his pain under control enough so he can rest and heal. We know if he could sleep and rejuvenate his rehab would be going much better. Even with his weakness he's still learning a lot and progressing but it's gotten a lot slower. By the end of the week his PT says she wants to try a transfer to/from the wheelchair without the slideboard! Scary but awesome. I hope he can reach that goal.
We've been overwhelmed today by some unexpected phone calls from friends who have gone above and beyond in supporting us both moral support and in more tangible ways. We feel so blessed to have such wonderful caring people in our lives and hope that one day we can repay the kindness, although we hope it's not for the same reasons. We love you guys, really. More than we can express.
Day two of radiation went a bit faster than day one. As they get the routine down it will go even faster which is nice. The quicker he can get in and out of there the better!
I finally got the mail order pharmacy to push through the prescription (bout time!) so he should have his chemo meds tomorrow. He's eager to start which again is odd in the grand scheme of things but in this situation I think it's probably normal. Let's get this wagon train a movin!
The doctors/nurses/therapists have meetings about each patient on tuesdays where they assess where the patient is in their recovery and plan out goals based on patient input and dr/therapist recommendations. They had their first meeting of this sort today and have designated David a T8 paraplegic (time will tell if that will change or not) and have set a tentative go home date for Feb 10th. Oy! That puts him at 4 weeks in rehab. Not what we were hoping for but the goal they set is for him to be primarily independent when he gets home. It feels like a very very long road from now but I suppose everyone feels that way. A guy was leaving the day we got there after recovering from a stroke. He said he was there 30 days and it flew by really fast. We're hoping that's the case. There's a possibility he could come home sooner if they can get his pain under control enough so he can rest and heal. We know if he could sleep and rejuvenate his rehab would be going much better. Even with his weakness he's still learning a lot and progressing but it's gotten a lot slower. By the end of the week his PT says she wants to try a transfer to/from the wheelchair without the slideboard! Scary but awesome. I hope he can reach that goal.
We've been overwhelmed today by some unexpected phone calls from friends who have gone above and beyond in supporting us both moral support and in more tangible ways. We feel so blessed to have such wonderful caring people in our lives and hope that one day we can repay the kindness, although we hope it's not for the same reasons. We love you guys, really. More than we can express.
Monday, January 16, 2012
Ah sweet progress!
Today was a good day. David got out of bed bright and early for breakfast and stayed up pretty much until 2:15 when he took a quick nap then got back up for radiation. YAY! Radiation! Seriously never thought we'd be celebrating that... perspective I guess.
He had 3 physical therapy sessions and 1 occupational therapy session, I think they were making up for yesterday. His muscles are going to be so sore tomorrow. I hope he can get comfortable in a while and get some good rest, he earned it!
There was a minor bump in the road as far as chemo is concerned. Insurance requires that it be sent through a mail order pharmacy and they didn't get their act together quickly enough to send it out for arrival today... or even shipping today... so it will be shipped tomorrow for arrival on wednesday. We talked to the dr about it and he wasn't at all concerned as long as it's within a week of starting radiation. Dave also got some fun new meds today. Coumadin for the DVT (deep vein thrombosis, blood clots) and two anti-nausea meds for treatments Zofran and Compazine. Plus he gets occasional advil, valium, and oxy for muscle discomfort. The guy is like a walking pharmacy! I asked the local pharmacy if we could just pick up there and they said insurance wouldn't cover it. I asked if we could purchase a single day worth out of pocket so she checked on the price. $300+ for ONE DAY! Um, yeah, we'll wait for the mail order thank you very much. Thank God for insurance! It's never been a better time to work for the insurance company!
Owen and I took him thai food for dinner after his treatment and sat there listening to another patient recount his stories from WWII and the Korean War. Colorful gentleman that had somehow cornered David as his captive audience. The guy could barely hear a thing but had a lot of fun loudly retelling the stories like they happened yesterday and complaining about the government, especially the TSA's treatment of older women! The nerve! My favorite was him rambling on about being stationed in California and blah blah (I zoned out) My General, General Travis this and that and then his plane crashed and "That's why it's named Travis Airforce Base" I should have paid more attention to the story! It's interesting to see who is in rehab for what. Most of the patients seem to be recovering from strokes and David appears to be the only one with a spinal injury and all the current patients are men. I don't think that's by design, just a strange coincidence. Dave is also the youngest by at least 10 years from what we can tell.
I hope tonight he gets some good sleep, I had to nag him to remember to take pain meds. He has to ask for them since they are on an as needed basis. He stops taking them because he feels fine (because he took them) and then they get out of his system and he lays there uncomfortable for hours. Men! Some day he'll learn. Or he'll just have to deal with me nagging him. I'd rather nag than have him in pain.
So today starts a 5 and a half week journey through radiation. So far no nausea, let's hope that trend continues! We're so relieved to have a positive day, we all needed it.
He had 3 physical therapy sessions and 1 occupational therapy session, I think they were making up for yesterday. His muscles are going to be so sore tomorrow. I hope he can get comfortable in a while and get some good rest, he earned it!
There was a minor bump in the road as far as chemo is concerned. Insurance requires that it be sent through a mail order pharmacy and they didn't get their act together quickly enough to send it out for arrival today... or even shipping today... so it will be shipped tomorrow for arrival on wednesday. We talked to the dr about it and he wasn't at all concerned as long as it's within a week of starting radiation. Dave also got some fun new meds today. Coumadin for the DVT (deep vein thrombosis, blood clots) and two anti-nausea meds for treatments Zofran and Compazine. Plus he gets occasional advil, valium, and oxy for muscle discomfort. The guy is like a walking pharmacy! I asked the local pharmacy if we could just pick up there and they said insurance wouldn't cover it. I asked if we could purchase a single day worth out of pocket so she checked on the price. $300+ for ONE DAY! Um, yeah, we'll wait for the mail order thank you very much. Thank God for insurance! It's never been a better time to work for the insurance company!
Owen and I took him thai food for dinner after his treatment and sat there listening to another patient recount his stories from WWII and the Korean War. Colorful gentleman that had somehow cornered David as his captive audience. The guy could barely hear a thing but had a lot of fun loudly retelling the stories like they happened yesterday and complaining about the government, especially the TSA's treatment of older women! The nerve! My favorite was him rambling on about being stationed in California and blah blah (I zoned out) My General, General Travis this and that and then his plane crashed and "That's why it's named Travis Airforce Base" I should have paid more attention to the story! It's interesting to see who is in rehab for what. Most of the patients seem to be recovering from strokes and David appears to be the only one with a spinal injury and all the current patients are men. I don't think that's by design, just a strange coincidence. Dave is also the youngest by at least 10 years from what we can tell.
I hope tonight he gets some good sleep, I had to nag him to remember to take pain meds. He has to ask for them since they are on an as needed basis. He stops taking them because he feels fine (because he took them) and then they get out of his system and he lays there uncomfortable for hours. Men! Some day he'll learn. Or he'll just have to deal with me nagging him. I'd rather nag than have him in pain.
So today starts a 5 and a half week journey through radiation. So far no nausea, let's hope that trend continues! We're so relieved to have a positive day, we all needed it.
Sunday, January 15, 2012
Peace and Quiet
I forgot to mention that last night when Owen and I went to have dinner with Dave we got food from a little BBQ place across the street. They gave us a take-away menu and I noticed at the bottom of the menu it said, "Mad Viking's Smokehouse can cater your event, party, tailgater or WOW raid." Hahahaha... It makes us nerdy for even knowing what that is but it was a good laugh and we needed that. Why did we never think to cater raids?!
David had a pretty uneventful day since he was "grounded" until 5pm. He had a quick meeting with the occupational therapist who said she wouldn't do anything with his upper body since she isn't supposed to get his heart rate up and then he had a meeting with the recreational therapist (what an awesome job!) It's a guy in a wheel chair with some obvious physical limitations who talks with patients about how to adapt to their new limitations so they can still participate in the activities they already enjoy and how to find new activities they might also enjoy. Mostly the guy asked David a million questions about what he likes to do in his spare time and what our lifestyle was like before 2 weeks ago so he can help him devise a plan for how he wants life to be when he gets home. He asked what D's goals are for when he leaves rehab. I don't think he had thought of it in that way so it was good to get him making goals and planning again. He's a planner!
Normally when David is sick in bed he turns on a (disney) cartoon so I brought the laptop and we watched Tangled on Netflix. I left around 2 and he slept until around 5! Guess he was tired. Muscle aches and valium can really wear you out! When he woke up he said he felt much better and he's really looking forward to tomorrow when he can go to physical therapy again and he starts his radiation/chemo treatments. What a strange thing to look forward to. He said it's a step towards fighting back. His brother, who has done various chemo treatments for 3 years after being told he had 6 weeks to live, commented "fun". I suppose it's not fun but it's a milestone that we were looking forward to because it means he's moving forward and not just stuck in bed like the last 2 weeks have kind of felt like. Growing up I don't think David had a lot in common with his older brother, Chris. It's too bad that this had to be their common ground but I hope David is just as stubborn as Chris in that regard. Maybe they have two things in common.
Owen and I had a kick back kind of day. His friend Josie put a bug in his ear about watching Dr Who so he spent a little time on Netflix catching a couple episodes of the newer series. When I told him it was time for bed he said, "But I'm watching sci-fi" HA! Before I know it Josie will have also convinced him to be interested in anime, she's already trying to figure out what character he could dress up as. I don't know that he's going to go for that but stranger things have happened.
It also snowed today! First snow of winter for us. It was only a dusting and it didn't last long but I'm hoping it doesn't pour down and cause any snow days because I'm kind of relying on routine right now. Forecast says there's a possibility of 3-5 inches on the valley floor. I'll believe it when I see it (I hope I don't see it). I almost feel bad putting our indoor/outdoor cat, Freckles, outside like usual tonight but if I don't she'll wake me up at 4:00 am. Not that I'm not up at that time anyway (having trouble sleeping) but I'd rather not have to get up to put her out if I can help it. Good thing she put on that winter coat!
I'm glad to report quiet "normal" things today and hope that can continue for the duration of rehab and treatments. We anticipate that there will be ups and downs along the way but we're hoping for more ups than downs.
Random side note: His nurse really really looks like Madeleine Stowe. Really!
David had a pretty uneventful day since he was "grounded" until 5pm. He had a quick meeting with the occupational therapist who said she wouldn't do anything with his upper body since she isn't supposed to get his heart rate up and then he had a meeting with the recreational therapist (what an awesome job!) It's a guy in a wheel chair with some obvious physical limitations who talks with patients about how to adapt to their new limitations so they can still participate in the activities they already enjoy and how to find new activities they might also enjoy. Mostly the guy asked David a million questions about what he likes to do in his spare time and what our lifestyle was like before 2 weeks ago so he can help him devise a plan for how he wants life to be when he gets home. He asked what D's goals are for when he leaves rehab. I don't think he had thought of it in that way so it was good to get him making goals and planning again. He's a planner!
Normally when David is sick in bed he turns on a (disney) cartoon so I brought the laptop and we watched Tangled on Netflix. I left around 2 and he slept until around 5! Guess he was tired. Muscle aches and valium can really wear you out! When he woke up he said he felt much better and he's really looking forward to tomorrow when he can go to physical therapy again and he starts his radiation/chemo treatments. What a strange thing to look forward to. He said it's a step towards fighting back. His brother, who has done various chemo treatments for 3 years after being told he had 6 weeks to live, commented "fun". I suppose it's not fun but it's a milestone that we were looking forward to because it means he's moving forward and not just stuck in bed like the last 2 weeks have kind of felt like. Growing up I don't think David had a lot in common with his older brother, Chris. It's too bad that this had to be their common ground but I hope David is just as stubborn as Chris in that regard. Maybe they have two things in common.
Owen and I had a kick back kind of day. His friend Josie put a bug in his ear about watching Dr Who so he spent a little time on Netflix catching a couple episodes of the newer series. When I told him it was time for bed he said, "But I'm watching sci-fi" HA! Before I know it Josie will have also convinced him to be interested in anime, she's already trying to figure out what character he could dress up as. I don't know that he's going to go for that but stranger things have happened.
It also snowed today! First snow of winter for us. It was only a dusting and it didn't last long but I'm hoping it doesn't pour down and cause any snow days because I'm kind of relying on routine right now. Forecast says there's a possibility of 3-5 inches on the valley floor. I'll believe it when I see it (I hope I don't see it). I almost feel bad putting our indoor/outdoor cat, Freckles, outside like usual tonight but if I don't she'll wake me up at 4:00 am. Not that I'm not up at that time anyway (having trouble sleeping) but I'd rather not have to get up to put her out if I can help it. Good thing she put on that winter coat!
I'm glad to report quiet "normal" things today and hope that can continue for the duration of rehab and treatments. We anticipate that there will be ups and downs along the way but we're hoping for more ups than downs.
Random side note: His nurse really really looks like Madeleine Stowe. Really!
Saturday, January 14, 2012
Never A Dull Moment
Today was Dave's first full day at the rehab center. They got him up and did 3 sessions today (two with physical therapy and one with occupational therapy) He's making huge improvements every day moving in and out of the chair, learning to sit up in bed by himself and doing some basic strengthening exercises. It's a good thing his arms have always been relatively strong because he's having to hoist himself all over! He's been tired but he's really earning those naps! He is really doing great!
My Mom and Nana convinced me to swallow my pride and let them come clean my house for me. I'm so glad I did. They figure I won't be able to find anything but I don't really care, it's clean and that's a weight off my shoulders that I didn't realize was so heavy. Thank you! It's nice to not have to worry about it and of course now Owen's like, "Hey, the kitchen is clean, let's make cookies!" He can make whatever he wants as long as he cleans up after himself!
I spent most of the day with Dave and then came home in the afternoon to get Owen to go back for dinner. Right before I left to come home Dave got an ultrasound on his legs to check for blood clots. The dr said it was routine and sure enough... they found clots. Now he's back on bedrest for 24 hours. He could sit up to eat but was told to not even touch his legs. They gave him new meds and hopefully that will take care of it quickly. It figures that it's the first time Owen has seen him in a week and he happens to be back on bedrest. I thought it had been long enough and wanted to take O back to see his Dad so I didn't let it stop me and we had a nice dinner together. They both needed to see each other.
Luckily it shouldn't set him back too far with therapy because tomorrow was supposed to be the easy day so he only had one short session scheduled. All he has to do is lay perfectly still... lol... because that's really easy... Maybe he can finally finish his last Wheel of Time book. I guess I titled this post "never a dull moment" when in reality it sounds like his tomorrow will be full of dull moments. I might have to bring him the mini-laptop so he can watch netflix or something.
I'm hoping for a hunky-dory status quo kind of day soon. I know it's a lot to ask but any day now would be fantastic. We like roller coasters as a rule but this one is a little too rickety for my tastes.
My Mom and Nana convinced me to swallow my pride and let them come clean my house for me. I'm so glad I did. They figure I won't be able to find anything but I don't really care, it's clean and that's a weight off my shoulders that I didn't realize was so heavy. Thank you! It's nice to not have to worry about it and of course now Owen's like, "Hey, the kitchen is clean, let's make cookies!" He can make whatever he wants as long as he cleans up after himself!
I spent most of the day with Dave and then came home in the afternoon to get Owen to go back for dinner. Right before I left to come home Dave got an ultrasound on his legs to check for blood clots. The dr said it was routine and sure enough... they found clots. Now he's back on bedrest for 24 hours. He could sit up to eat but was told to not even touch his legs. They gave him new meds and hopefully that will take care of it quickly. It figures that it's the first time Owen has seen him in a week and he happens to be back on bedrest. I thought it had been long enough and wanted to take O back to see his Dad so I didn't let it stop me and we had a nice dinner together. They both needed to see each other.
Luckily it shouldn't set him back too far with therapy because tomorrow was supposed to be the easy day so he only had one short session scheduled. All he has to do is lay perfectly still... lol... because that's really easy... Maybe he can finally finish his last Wheel of Time book. I guess I titled this post "never a dull moment" when in reality it sounds like his tomorrow will be full of dull moments. I might have to bring him the mini-laptop so he can watch netflix or something.
I'm hoping for a hunky-dory status quo kind of day soon. I know it's a lot to ask but any day now would be fantastic. We like roller coasters as a rule but this one is a little too rickety for my tastes.
Friday, January 13, 2012
Finally a carrot!
Dave got moved to rehab today. HOORAY! He's tired and ended up with a lot of drugs to ease the pain so he could sleep last night but he's so happy to be there. It's been a long road just to meet this milestone but we're almost overwhelmed at how relieved we are to start the next leg of this journey.
He'll be in 3 hours of physical/occupational therapy a day. They like them to eat meals in the common room and wear their own clothes (yay no more drafty hospital gowns!) and they encourage family to join in therapy sessions. The whole family learns things! This is a great opportunity to re-engage Owen in the new reality of things. He's very mindful of what Dad's needs are going to be which is very sweet of him. He's such a thoughtful boy. We certainly hit the jackpot with that one. I think we'll keep him.
Visiting hours for guests are now limited to 4:30-8:30 so as not to interfere with the physical therapy schedule and it's in a very sterile, antiquated part of the old hospital but it's still such an improvement morale wise over the plush neurology department at Riverbend.
We found out today that Dave has lost 20 lbs since when he first checked in on the 2nd. That's seriously the worst diet ever. Since he's having to hoist himself around with his arms he's happy that he's down those 20! His muscles are still pretty sore, especially on his back. Holding yourself up without being able to feel much of your legs is harder than you think! The dr has still said he expects some of that mobility to come back but we're just not really seeing it. Time will tell. We're trying to stay positive.
One thing we've found over the last 2 weeks is that everyone we dealt with on the neurology floor was really fantastic. They have these "Super Care Awards" that you can give to the nurses and we just can't even fill out enough of them to really show how much we appreciate them. They were absolutely wonderful and we are thankful beyond words. I know a nurse's job is to care for their patients but so many of them went above and beyond for us that it really made an impression. It makes me consider a career in nursing.
After a rough day like yesterday it was such a relief for Dave to reach a goal and have something tangible to show for it.
He'll be in 3 hours of physical/occupational therapy a day. They like them to eat meals in the common room and wear their own clothes (yay no more drafty hospital gowns!) and they encourage family to join in therapy sessions. The whole family learns things! This is a great opportunity to re-engage Owen in the new reality of things. He's very mindful of what Dad's needs are going to be which is very sweet of him. He's such a thoughtful boy. We certainly hit the jackpot with that one. I think we'll keep him.
Visiting hours for guests are now limited to 4:30-8:30 so as not to interfere with the physical therapy schedule and it's in a very sterile, antiquated part of the old hospital but it's still such an improvement morale wise over the plush neurology department at Riverbend.
We found out today that Dave has lost 20 lbs since when he first checked in on the 2nd. That's seriously the worst diet ever. Since he's having to hoist himself around with his arms he's happy that he's down those 20! His muscles are still pretty sore, especially on his back. Holding yourself up without being able to feel much of your legs is harder than you think! The dr has still said he expects some of that mobility to come back but we're just not really seeing it. Time will tell. We're trying to stay positive.
One thing we've found over the last 2 weeks is that everyone we dealt with on the neurology floor was really fantastic. They have these "Super Care Awards" that you can give to the nurses and we just can't even fill out enough of them to really show how much we appreciate them. They were absolutely wonderful and we are thankful beyond words. I know a nurse's job is to care for their patients but so many of them went above and beyond for us that it really made an impression. It makes me consider a career in nursing.
After a rough day like yesterday it was such a relief for Dave to reach a goal and have something tangible to show for it.
Thursday, January 12, 2012
One step forward, three steps back
I can't even begin to express how disappointing and frustrating today has
been. It's definitely been the most trying day of this little adventure
so far. David was supposed to be moved to rehab today but he woke up with
abdominal pain. Yesterday he had some pain as well and I teased him that
he overdid it during physical therapy but the pain was soreness and not sharp
pain. Today it hurt in a band around his whole body across his ribs but
more sharp near the left side so the Drs thought it was his stomach and to him
that’s what it could have been because everything hurt so much he couldn’t
really tell.
Fast forward through a very painful (12 on a scale of 1-10) day, a couple of near anxiety attacks from the intensity of the pain, 3 doses of morphine, nausea meds, valium, advil, ice packs and heating pads and I FINALLY convinced the physical therapist to consider that he pulled a muscle and the sharpness was from when the muscles were spasming. Apparently he went for that explanation and so did the Docs when he mentioned it to them. Ahhhh the heavens open up and the light shines down. I’d been saying it all day and they finally listened. Apparently they gave him some muscle relaxers and he’s doing much better now. I felt terrible that I had to leave early to take care of the aforementioned FedEx drama. At least that’s out of the way.
Needless to say when the rehab doc found out he got morphine he put the kibosh on the move so that was a total let down. They like them to be not in pain when they get there, go figure. Better that he not be moved than have him be moved and then moved back but that’s very little consolation right now. I also realized that the Dr who supervises the rehab place is the step-uncle of a girlfriend I've been friends with since kindergarten. Small world.
So then we got news that they were going to start treatment tomorrow! SO EXCITING! Then they called back and said the dr would rather wait until Monday so he can do 5 days in a row instead of 1 day then wait a weekend then start again. That makes sense but why get our hopes up?! GRRRR Lots of frustration. Then they mentioned that they don't always move people to rehab on fridays or on weekends so he could well still be at the hospital until monday. More fantastic! Monday will be 2 weeks. 2 weeks at the hospital is a long long... long... time. So many disappointments. Har har... dis... appointments... heh. Yeah... I need sleep... sleep helps me not overuse ellipses.
Fast forward through a very painful (12 on a scale of 1-10) day, a couple of near anxiety attacks from the intensity of the pain, 3 doses of morphine, nausea meds, valium, advil, ice packs and heating pads and I FINALLY convinced the physical therapist to consider that he pulled a muscle and the sharpness was from when the muscles were spasming. Apparently he went for that explanation and so did the Docs when he mentioned it to them. Ahhhh the heavens open up and the light shines down. I’d been saying it all day and they finally listened. Apparently they gave him some muscle relaxers and he’s doing much better now. I felt terrible that I had to leave early to take care of the aforementioned FedEx drama. At least that’s out of the way.
Needless to say when the rehab doc found out he got morphine he put the kibosh on the move so that was a total let down. They like them to be not in pain when they get there, go figure. Better that he not be moved than have him be moved and then moved back but that’s very little consolation right now. I also realized that the Dr who supervises the rehab place is the step-uncle of a girlfriend I've been friends with since kindergarten. Small world.
So then we got news that they were going to start treatment tomorrow! SO EXCITING! Then they called back and said the dr would rather wait until Monday so he can do 5 days in a row instead of 1 day then wait a weekend then start again. That makes sense but why get our hopes up?! GRRRR Lots of frustration. Then they mentioned that they don't always move people to rehab on fridays or on weekends so he could well still be at the hospital until monday. More fantastic! Monday will be 2 weeks. 2 weeks at the hospital is a long long... long... time. So many disappointments. Har har... dis... appointments... heh. Yeah... I need sleep... sleep helps me not overuse ellipses.
Oh, and to mark the fantastic start to this wonderful day I noticed
that the tank on the toilet in the master bath has a craze line and was slowly
leaking all over the floor. Great! I turned off the water and flushed the toilet
and left for the hospital. I grabbed
some marine epoxy that should take care of the problem temporarily until I have
a little more mental capacity to deal with replacing it. Plus if there is a kind that might be better
to have for when Dave comes home that would be a good excuse to make that change.
We’re still trying to look towards rehab where he can get
stronger and come home but it’s hard to see past the end of the day. Especially on days like today. It’s so hard to see him in that much pain and
not be able to do anything but hold his hand or in this case dig my fist into
his back which seemed to be the only thing that eased the pressure… hence why I
thought it was a muscle problem. He kept
apologizing but I was just relieved that we found something that helped. He updated me tonight and said the nurses are
keeping a good close watch on him and bringing him warm compresses for his
muscles and taking good care of him. That
makes it easier for me to leave when I have to, and sometimes I do have to.
Owen spent the afternoon with family but I know he’d like to
be at home more. We’ve been home long
enough to eat dinner, visit a bit or watch part of a movie (took 3 days to
watch Tron:Legacy, unacceptable!) and
then it’s bed time. That’s not very
conducive to quality time or rest or getting things done. As a random aside: at school every day they
learn about and taste a different food item (fruits and vegis mostly) and yesterday
at school they had shitake mushrooms.
Apparently most of the kids didn’t like them so Owen took home a few
extras (with permission) and we made stroganoff for dinner. A quick, easy and cheap skid row stroganoff
we used to have occasionally when I was a kid but we tossed the shitakes in
there. High class skid row.
Wednesday, January 11, 2012
Tomorrow and tomorrow and tomorrow...
...creeps in this petty pace from day to day...(a shakespeare quote David can rattle off at the drop of a hat when prompted)
It feels like we're in a constant waiting pattern. You'll go to rehab wednesday... you'll go to rehab thursday... you'll start treatment this week... you'll start treatment next week...
The fact is we just don't know. We've been looking forward to a new normal meaning a steady and reliable existence but we're starting to think that "normal" is the rocky not knowing and that's going to have to be ok too. We can get used to that even if we don't want to. We have to find normal in adaptability.
On the plus side we finally have some things to look forward to. The Medical Director from the rehab center is coming to see him in the morning and he'll assess whether Dave is ready for rehab. Everyone is hoping they can move him tomorrow (heh) or possibly friday if it doesn't come together for some reason. Fingers crossed for tomorrow! Treatment will either start friday or monday. Again, hoping for friday but monday is also on the horizon and will give him a few days to start more concentrated physical/occupational therapy.
A minor down side is that Oregon Rehab Center (ORC) is at the old Sacred Heart Hospital, the one where Owen was born... and I was born.. and my mom was born. The facility has been around a while so it's not new and pretty like the Riverbend hospital but it's a change of pace and it's a relatively minor stop on the road home.
He could be there anywhere from 2-4 weeks depending on the goals and his progress. That excites me! His progress has been amazing so far. He went from barely being able to get into a wheel chair without a lot of assistance and not being able to sit up on his own at the edge of the bed to moving to the chair ALMOST by himself and being able to toss a ball around while on the edge of the bed. Progress! He doesn't see it like I do but I cheer him on none-the-less. He probably thinks I'm dishing him a bowl of false enthusiasm but I'm absolutely earnest.
Even with all the frustrations I still feel like today was productive and it gave us a sense that things are happening... but they are all happening TOMORROW! (not literally) It's nice to have a plan!
The meeting with the medical oncologist went very well. He wants to start chemo the same day as radiation (whenever that is) and after radiation is over he wants to keep him on it for 5 days a month for about a year. Then he'll re-evaluate the need. From what I've read, yeah yeah I google, it's what I do, that seems like a normal course of treatment. The chemo drug is called Temodar and it's in pill form. They say it shouldn't cause the normal nasty side effects other than some nausea which they are confident they can control. The oncologist made some comments about the oddity of the tumor being in the spine and added that he thinks it gives him a slightly better prognosis because it's not a tumor that's going to web into the brain like it normally does. His job is to try to keep the tumor from growing that direction. He noted that even if it gets worse in the spine people can live happy productive lives in wheel chairs but not when it takes over your whole brain so he counts him as lucky. It's all in the perspective.
Owen and I are doing well. I had a little run in with Fed Ex tonight because they keep trying to deliver something and I keep trying to get them to hold the package since I'm not home. The guy I talked to had a thick accent so I had to keep asking him to repeat himself. He kept telling me they were going to deliver it again tomorrow and I HAVE to be there to sign for it... not gonna happen! Then after a few minutes of pure frustration he figured out that oh wait... they already tried to deliver it 3 times and it's already being held for me. Thanks man... that's what I was trying to tell you for the last 5 minutes but you weren't paying enough attention to get that! I guess it wasn't in the script. I knew my frustrations would manifest eventually. I just didn't realize it would be directed at the Fed Ex guy! Whew, glad to have that out of my system! Sorry for him that he caught my moment of wrath.
I'm really looking forward to tomorrow and to possibilities and to taking a step towards getting David home.
It feels like we're in a constant waiting pattern. You'll go to rehab wednesday... you'll go to rehab thursday... you'll start treatment this week... you'll start treatment next week...
The fact is we just don't know. We've been looking forward to a new normal meaning a steady and reliable existence but we're starting to think that "normal" is the rocky not knowing and that's going to have to be ok too. We can get used to that even if we don't want to. We have to find normal in adaptability.
On the plus side we finally have some things to look forward to. The Medical Director from the rehab center is coming to see him in the morning and he'll assess whether Dave is ready for rehab. Everyone is hoping they can move him tomorrow (heh) or possibly friday if it doesn't come together for some reason. Fingers crossed for tomorrow! Treatment will either start friday or monday. Again, hoping for friday but monday is also on the horizon and will give him a few days to start more concentrated physical/occupational therapy.
A minor down side is that Oregon Rehab Center (ORC) is at the old Sacred Heart Hospital, the one where Owen was born... and I was born.. and my mom was born. The facility has been around a while so it's not new and pretty like the Riverbend hospital but it's a change of pace and it's a relatively minor stop on the road home.
He could be there anywhere from 2-4 weeks depending on the goals and his progress. That excites me! His progress has been amazing so far. He went from barely being able to get into a wheel chair without a lot of assistance and not being able to sit up on his own at the edge of the bed to moving to the chair ALMOST by himself and being able to toss a ball around while on the edge of the bed. Progress! He doesn't see it like I do but I cheer him on none-the-less. He probably thinks I'm dishing him a bowl of false enthusiasm but I'm absolutely earnest.
Even with all the frustrations I still feel like today was productive and it gave us a sense that things are happening... but they are all happening TOMORROW! (not literally) It's nice to have a plan!
The meeting with the medical oncologist went very well. He wants to start chemo the same day as radiation (whenever that is) and after radiation is over he wants to keep him on it for 5 days a month for about a year. Then he'll re-evaluate the need. From what I've read, yeah yeah I google, it's what I do, that seems like a normal course of treatment. The chemo drug is called Temodar and it's in pill form. They say it shouldn't cause the normal nasty side effects other than some nausea which they are confident they can control. The oncologist made some comments about the oddity of the tumor being in the spine and added that he thinks it gives him a slightly better prognosis because it's not a tumor that's going to web into the brain like it normally does. His job is to try to keep the tumor from growing that direction. He noted that even if it gets worse in the spine people can live happy productive lives in wheel chairs but not when it takes over your whole brain so he counts him as lucky. It's all in the perspective.
Owen and I are doing well. I had a little run in with Fed Ex tonight because they keep trying to deliver something and I keep trying to get them to hold the package since I'm not home. The guy I talked to had a thick accent so I had to keep asking him to repeat himself. He kept telling me they were going to deliver it again tomorrow and I HAVE to be there to sign for it... not gonna happen! Then after a few minutes of pure frustration he figured out that oh wait... they already tried to deliver it 3 times and it's already being held for me. Thanks man... that's what I was trying to tell you for the last 5 minutes but you weren't paying enough attention to get that! I guess it wasn't in the script. I knew my frustrations would manifest eventually. I just didn't realize it would be directed at the Fed Ex guy! Whew, glad to have that out of my system! Sorry for him that he caught my moment of wrath.
I'm really looking forward to tomorrow and to possibilities and to taking a step towards getting David home.
Tuesday, January 10, 2012
Making a plan
Today was a relatively good day. They rescheduled the medical oncologist
appointment for tomorrow because they didn’t want to wear Dave out. It
would put him out of bed for 6+ hours instead of 4, but we did meet with
the radiation oncologist. He answered every question we have including
things about dietary and supplement inclusions and exclusions. They
want to start at the end of this week or early next week, we’ll find out
more after the medical appt tomorrow. The Dr suggested he stay away
from excessive antioxidants while doing radiation. He noted that
radiation works through oxidation so why would you put ANTI-oxidants in
your body if you want the radiation to work? Good point. He also went
through the risks associated with treatment on the spine but assured us
that at this dose and only doing one coarse of treatment he doesn’t feel
there is a significant risk of major damage. He couldn’t promise that,
but they never do. At the end of the appt they tossed Dave up on the
table and did some markings and an initial CT to get measurements and
sent him on his merry way.
Our spirits are up because there is a plan in the works. They want to move him to rehab tomorrow or Thursday and now we’re hearing that they will likely keep him 1-2 weeks instead of the 4-6 weeks someone freaked me out with the other day. The fact that I’m a stay at home caregiver does a lot to get him home sooner since they don’t have to make him 100% self-sufficient before he leaves their facility. ooh and he gets the staples out of his incision tomorrow! BONUS!
Radiation and Chemo will run concurrently and will likely start at the end of this week or early next week (fingers crossed) and will last 5.5 weeks, he can do that while in the rehab center although he’ll have to be transferred every day. The chemo is relatively gentle so he shouldn’t get too sick or lose his hair or anything. As long as it’s strong enough to make a difference where it counts, that’s all we care about.
Owen is doing really well. He spent some time at his friend’s house after school today and will go there tomorrow. It’s nice to know he’s not hanging out at home alone stewing about things although he’d probably be happy if I’d just leave him alone a little bit. No such luck, pal! We’re very thankful to all the people who have lovingly stepped up to keep him occupied while all this stuff is going on. He really seems to love it although after his whirlwind weekend of fun at the Wolfe house I’m having a heck of a time getting him to sleep on time. HA!
I feel like I'm falling behind with emails and texts. My capacity is a little limited right now so I hope people understand. Please don't take it to mean we don't appreciate and find strength in the messages. I want everyone to know that I read them to Dave and we appreciate all the love and support. My uncle told me, “..you need to face whatever comes your way, and be ready to say, "Thank you, I am the recipient of many, many blessings."” When I first read it I thought that’s a nice sentiment but that he was full of it because this doesn’t feel like a blessing kind of situation. That was 5 very long days ago and right now I can’t even count how many blessings that have presented themselves to us. Our families have rallied around us and we have more amazing friends than we ever realized. (Seriously, I don’t know what we’d do without you) The support structure is almost overwhelming… in a good way. It reminds us not to take people for granted and to count our blessings more regularly. It also reminds me to read the encouraging words with more of an open heart and not dismiss the “buck up little camper” messages out of hand. Overall it’s a good lesson.
Please know that we love hearing from everyone and we know you don’t know what to say… we don’t either. We don’t expect you to be profound but your love and support is really all there is to do right now. Unless you want to clean our house. HA! (thought I’d slip that in there)
Much love!
~M
Our spirits are up because there is a plan in the works. They want to move him to rehab tomorrow or Thursday and now we’re hearing that they will likely keep him 1-2 weeks instead of the 4-6 weeks someone freaked me out with the other day. The fact that I’m a stay at home caregiver does a lot to get him home sooner since they don’t have to make him 100% self-sufficient before he leaves their facility. ooh and he gets the staples out of his incision tomorrow! BONUS!
Radiation and Chemo will run concurrently and will likely start at the end of this week or early next week (fingers crossed) and will last 5.5 weeks, he can do that while in the rehab center although he’ll have to be transferred every day. The chemo is relatively gentle so he shouldn’t get too sick or lose his hair or anything. As long as it’s strong enough to make a difference where it counts, that’s all we care about.
Owen is doing really well. He spent some time at his friend’s house after school today and will go there tomorrow. It’s nice to know he’s not hanging out at home alone stewing about things although he’d probably be happy if I’d just leave him alone a little bit. No such luck, pal! We’re very thankful to all the people who have lovingly stepped up to keep him occupied while all this stuff is going on. He really seems to love it although after his whirlwind weekend of fun at the Wolfe house I’m having a heck of a time getting him to sleep on time. HA!
I feel like I'm falling behind with emails and texts. My capacity is a little limited right now so I hope people understand. Please don't take it to mean we don't appreciate and find strength in the messages. I want everyone to know that I read them to Dave and we appreciate all the love and support. My uncle told me, “..you need to face whatever comes your way, and be ready to say, "Thank you, I am the recipient of many, many blessings."” When I first read it I thought that’s a nice sentiment but that he was full of it because this doesn’t feel like a blessing kind of situation. That was 5 very long days ago and right now I can’t even count how many blessings that have presented themselves to us. Our families have rallied around us and we have more amazing friends than we ever realized. (Seriously, I don’t know what we’d do without you) The support structure is almost overwhelming… in a good way. It reminds us not to take people for granted and to count our blessings more regularly. It also reminds me to read the encouraging words with more of an open heart and not dismiss the “buck up little camper” messages out of hand. Overall it’s a good lesson.
Please know that we love hearing from everyone and we know you don’t know what to say… we don’t either. We don’t expect you to be profound but your love and support is really all there is to do right now. Unless you want to clean our house. HA! (thought I’d slip that in there)
Much love!
~M
Monday, January 9, 2012
Diagnosis
For months my husband, David Eric, was plagued with strange growing symptoms and numerous tests that culminated in a New Years Day visit to the after hours clinic. I'll save the long sordid story for another day.. if ever... The 4th dr we saw was an internist and he thought there could be a problem in his thoracic spine. The next day led to a new MRI and ultimately a trip to the hospital where 3 days and a biopsy later David was diagnosed with Grade 3 Glioma in his spine. They told us it is incurable and inoperable but treatable.
This rare cancer is most likely due to a family anomaly known as Lynch Syndrome. The Dr told us it normally starts in the brain so for it to only (so far) present in the spinal cord is something like a 1 in 400,000 chance. I'm writing this blog because I've been deemed family information officer *snicker* and I'm starting to forget what I've said to who so I took a page out of my sister-in-law's book and started a blog to keep people up to date about my husband's condition and the adventures of our family saga. I wish I didn't have to follow her lead but I find wisdom in her methods. The rest of this is fairly clinical as I'm kind of in business mode, it helps with the sanity.
As of right now Dave has been in the hospital for a week, he has minimal use of his legs due to the tumor in his spinal cord although the doctor hopes some of that is still due to swelling after the biopsy and he'll get some of that back in the next few days. Not back to normal, but back to being able to use a walker instead of a wheel chair full time. The dr has been saying that for days with little change so it's hard to remain optimistic. Being on flat on your back bedrest for 3 days really takes a lot out of you but that's what was required after surgery to prevent spinal fluid leakage. The wound healed nicely so he was able to start sitting up on saturday. David is getting out of bed with the help of a physical therapist and getting into a wheel chair. Every day he has a little more endurance and a little more strength. I really can't believe how quickly he's gaining confidence and willpower moving from the bed . I can't tell you how much I love and admire the fight in that man.
Tomorrow we have appointments with two oncologists. One is a radiation oncologist and another is a medical oncologist that does the chemo. We'll be happy to have a treatment plan since we've been in a bit of a holding pattern regarding future plans.
They're also talking about moving him to inpatient rehab on wednesday. It too bad it's in the old hospital so its' a little more sterile and dreary but it will give him/us the education we need so David can safely come home where he belongs. Thank heavens we have a single story house and we have a handful of friend that have offered to help build a ramp "just in case" the walker scenario doesn't work out. We also found out that inpatient rehab usually keeps people 4-6 weeks. *sigh* Not what we were hoping for. The neurologist was saying "a few days" in rehab. Either he doesn't know how rehab works or the rehab people don't know him well enough yet and Dave needs more than the neuro does. Not sure which is true but I'm hoping for a week in rehab and then home. Time will tell. I'm tired of living apart from my husband when I know he's only 15 minute away.
We're all doing as well as can be expected. There's a little bit of a fog that comes and goes. Emotional roller coaster and all that. It's a little like the actual weather of the last few days. Wafting between rainy and sunny, always chilly but at night the fog rolls in so thick you have to drive a little slower to navigate through it, relying on the combination of the line on the side of the road and the fact that you've (I've) driven the road a million times in the last week to guide you like an autopilot. We're a little on autopilot.
This rare cancer is most likely due to a family anomaly known as Lynch Syndrome. The Dr told us it normally starts in the brain so for it to only (so far) present in the spinal cord is something like a 1 in 400,000 chance. I'm writing this blog because I've been deemed family information officer *snicker* and I'm starting to forget what I've said to who so I took a page out of my sister-in-law's book and started a blog to keep people up to date about my husband's condition and the adventures of our family saga. I wish I didn't have to follow her lead but I find wisdom in her methods. The rest of this is fairly clinical as I'm kind of in business mode, it helps with the sanity.
As of right now Dave has been in the hospital for a week, he has minimal use of his legs due to the tumor in his spinal cord although the doctor hopes some of that is still due to swelling after the biopsy and he'll get some of that back in the next few days. Not back to normal, but back to being able to use a walker instead of a wheel chair full time. The dr has been saying that for days with little change so it's hard to remain optimistic. Being on flat on your back bedrest for 3 days really takes a lot out of you but that's what was required after surgery to prevent spinal fluid leakage. The wound healed nicely so he was able to start sitting up on saturday. David is getting out of bed with the help of a physical therapist and getting into a wheel chair. Every day he has a little more endurance and a little more strength. I really can't believe how quickly he's gaining confidence and willpower moving from the bed . I can't tell you how much I love and admire the fight in that man.
Tomorrow we have appointments with two oncologists. One is a radiation oncologist and another is a medical oncologist that does the chemo. We'll be happy to have a treatment plan since we've been in a bit of a holding pattern regarding future plans.
They're also talking about moving him to inpatient rehab on wednesday. It too bad it's in the old hospital so its' a little more sterile and dreary but it will give him/us the education we need so David can safely come home where he belongs. Thank heavens we have a single story house and we have a handful of friend that have offered to help build a ramp "just in case" the walker scenario doesn't work out. We also found out that inpatient rehab usually keeps people 4-6 weeks. *sigh* Not what we were hoping for. The neurologist was saying "a few days" in rehab. Either he doesn't know how rehab works or the rehab people don't know him well enough yet and Dave needs more than the neuro does. Not sure which is true but I'm hoping for a week in rehab and then home. Time will tell. I'm tired of living apart from my husband when I know he's only 15 minute away.
We're all doing as well as can be expected. There's a little bit of a fog that comes and goes. Emotional roller coaster and all that. It's a little like the actual weather of the last few days. Wafting between rainy and sunny, always chilly but at night the fog rolls in so thick you have to drive a little slower to navigate through it, relying on the combination of the line on the side of the road and the fact that you've (I've) driven the road a million times in the last week to guide you like an autopilot. We're a little on autopilot.
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