Joe just can't kick this diarrhea... it's been a week now. Seemed to have been getting somewhat better (says he), but when he called down to the oncologist's office on Thursday to see what the results of the tests they'd run on Tuesday were, the PA was on call, and she got all freaked out (still diarrhea and a tad bit of fever), and wanted him to come back downtown. Joe just refused. Said he'd just been there Tuesday and saw the doc. Doc had said to up the Imodium and get plenty of fluids and all... had sent us across the way to get fluids, potassium and magnesium... Since the tests were all negative (finally got them to check the results), there was no reason to go for more. At the end of the day, since Joe had refused to go down, the PA called in some Flagyl... an anti-infective. Well, Joe started that, and the diarrhea has actually gotten worse. So, we've just stopped it. Going to try to get him to where he can travel without oopsing in his drawers (he's had a couple times he's not even made it from the bed to the bathroom), and then we're going to call the office and let the on call know that we're coming. Pretty much KNOW that he's going to have to have more fluids. I can't get him to eat for anything. They may end up putting in a feeding tube. I just don't know.
I KNOW that Joe can't do much more of this... but honestly, I don't know how much more of this I can handle. I'm just about worn out. This part of it is way worse than what I ever went through with Les, tho I can't imagine. Les stayed pretty mobile right up to when he went in for his transplant. I rarely had to run and fetch for him. Joe's been pretty much bed ridden since last weekend. Just doesn't have the energy to get up and go, or isn't wanting to get too far from the potty. I can barely get out of hearing range, much less out of the house.
Just pray for us... I just don't know what the next steps are going to be. (*"*)
Saturday, February 27, 2010
Tuesday, February 23, 2010
It was a good weekend...
it was a not so good weekend...
Chase was here Saturday night and most of Sunday. We had a good time, playing cars, watching cartoons... he helped me some out in the yard with the wax myrtle that broke in the snow and ice (good thing HE did... 'cause my brother never did come...). None of my family made it to the February birthday celebration. Daniel and Stacy came to get Chase, but said by the time they got to Mom and Dad's they'd have to leave to be home when Maria's father brought her back. They sat and visited here instead. I don't think Josh and Ashley went either. They'd planned on going Saturday night, but that all got changed around since my other brother had arranged a surprise BD thing for his wife. So, instead of 3 BD celebrant's on Saturday, they had two on Sunday. Oh well.
Friday night, I'd had to go pick up some Rx's for Joe... he'd started with the diarrhea again... and was getting sores in his mouth. He spent all Saturday in bed... and all of Sunday... Couldn't be any further than that from the bathroom. Finally called in to the oncologist's office Sunday morning and the on call doc called in a stronger anti-diarrheal med. Two days, and it's still not working...
So... we're fixing to head downtown to get him checked out. God willing, the PA will be able to come up with SOMETHING to get him back on the right track with all of this. Something has got to give...
Chase was here Saturday night and most of Sunday. We had a good time, playing cars, watching cartoons... he helped me some out in the yard with the wax myrtle that broke in the snow and ice (good thing HE did... 'cause my brother never did come...). None of my family made it to the February birthday celebration. Daniel and Stacy came to get Chase, but said by the time they got to Mom and Dad's they'd have to leave to be home when Maria's father brought her back. They sat and visited here instead. I don't think Josh and Ashley went either. They'd planned on going Saturday night, but that all got changed around since my other brother had arranged a surprise BD thing for his wife. So, instead of 3 BD celebrant's on Saturday, they had two on Sunday. Oh well.
Friday night, I'd had to go pick up some Rx's for Joe... he'd started with the diarrhea again... and was getting sores in his mouth. He spent all Saturday in bed... and all of Sunday... Couldn't be any further than that from the bathroom. Finally called in to the oncologist's office Sunday morning and the on call doc called in a stronger anti-diarrheal med. Two days, and it's still not working...
So... we're fixing to head downtown to get him checked out. God willing, the PA will be able to come up with SOMETHING to get him back on the right track with all of this. Something has got to give...
Friday, February 19, 2010
The fun is neverending!
Joe went back to work on Monday... red, swollen legs and all. Was supposed to take it easy. I told him not to push... if he felt okay doing 8 hours, do 8 hours... or 5 or 6... or 4... Yeah... he did over 9!!! He was trying to play catch up. I had called the doc's office about his legs... HE had called the doc's office from the truck, but we'd heard nothing back...
He gets home and goes in to change clothes... his legs are PURPLE! Looks like somebody beat him with a stick. OHMYGOSH! "I'm okay..." he says, says he... I go in the kitchen and I'm muttering... "Okay, if you're going to kill yourself, just do it... just get it over with, if you're going to die..." "Go ahead and call the doctor if you want to, but I'm NOT going to the hospital!" he says from the living room.
So, I call... I get the on call doc... "Hmmm... I can't imagine... Never heard of anything like that with any of the drugs he's taking... Hmmm..." I tell him, Joe reacts strangely to all of the chemicals... ask about it being a symptom of the hand and foot syndrome. He doesn't "think" so... he's going to read up on stuff and see if he can come up with anything. In the meantime, I've told him about our call in to OUR doc, with no response... I'm ticked... he seems ticked... Must have been, 'cause we no more than hung up and Dr. G called. "What's he doing now?" he says... He knows Joe... knows Joe's weird... I tell him what's going on. He says it IS weird, but doesn't seem to be life threatening, so just watch him... give him some Motrin for swelling (anti-inflammatory)... if it's hurt real bad, or gets worse (?!?!) either come down Tuesday for tests, or come in Wednesday on his lunch hour and let him look at it.
Well, Joe and I did some more reading ourselves... I, Doctor Suze, think it IS the hand and foot syndrome... one of the pamphlets talked about the severe discoloration due to constrictive clothes... heat... sweating... like might come from two pair of tube like socks... two pair of pants... That's my uneducated guess... Anyway, we do the "Motrin" for swelling... lotion up his legs and get his feet us. Seems to help...
THEN... dummy goes to work Tuesday and works... 10 1/2 hours! DUMMY! Comes home and can barely walk. Same as night before... get him in comfy clothes... ibuprofen for the swelling... lotion, and he is out like a trout. Out of the chair and into bed after a little bite to eat and his PM pills.
Wednesday morning... he gets up to pee... he's freezing, he says... check his temp... 101+. Tylenol... Email his coworker... he's going to be late... He can't get woke up... 1 hour, 2 hours... He calls Connie... he's not coming in. We're going to head to the doctor's office as soon as we can get around. I call the office, tell them we're coming in... We get there around 12:30, they take him back pretty quickly... The PA comes in, looks at him... orders labs... and comes back with the Doc. He checks him over... shaking his head... "What ARE you doing NOW?" lol! I think Joe perplexes him. He is NOT textbook, for sure. More labs. HE thinks Vasculitis. The chemicals causing the blood vessels to break down... Okay... could well be... he IS the doctor. Me, myself, and I STILL think it's part of the hand/foot thing. It started with the socks... the pants and belt pushing on his belly... THAT is where the discoloration started. He started wearing suspenders, and the discoloration on his belly is fading. His legs are starting to fade some... Still a LOT of edema... will NOT stay off his feet, or try to find a way to work with his feet up, even tho the Doc "prescribed" that (working with his feet on his desk).
Yesterday, he only put in 5-5 1/2 hours... about the same today... He's not going in until around 8:30... gives him another couple hours of sleep. Sleep is good. I don't know if he'll try to go in tomorrow at all or not. We're going to have a short check.
We've got to sit down this weekend and try to come up with a plan. May need to go ahead and try applying for SSD. It generally takes 6 months for it to go through. I don't know if he can make it another 6 months if this keeps up. And it seems the worse HE is getting, the worse I'm getting.
I have NEVER been a depressed person... Not to say I don't get blue when all of this starts getting to me, but typically, I can maintain a pretty positive outlook. When Les was sick, I belonged to the Hep C message board on WebMD. Met a lot of nice folks in the same, or similar boats. I think I ended up with Hep C overload... tho it was good to be able to talk to, vent to, people who knew where I was coming from. I could bitch and moan about things... compare notes... Some people were really sick, and their ugliness could really come out, but it was like a big Hep C family... I think with Les, tho... we had hope. REAL hope... He was really sick, but he was going to do the transplant and be better. It was a process... it was going to get worse before it would get better. But it WAS going to get better. We were fortunate that when he got put on the transplant list, the Navy put him on the TDRL (some sort of temporary retirement list) which gave us an income while we were awaiting his VA and SSD benefits to kick in. It was tight, and we did eventually have to file a Chapter 13, but we made it without too much todo.
With Joe... I don't know about a cancer support group. I feel like I am consumed with cancer. Cancer is my life. Everywhere I go, everything I do... I can't get away from it. There just is no normal anymore. It's all cancer. I don't have anywhere to go or anything to do to get away from it. Joe goes to work (he's back to driving my truck while the piece of crap beater he bought to drive sits in the driveway... he doesn't want me driving it because he's afraid it'll break down and I'll be stuck), and I'm here at home. I try to stay busy... to not think about things, and usually, I do pretty well. I try to refuse to give in to sadness and sorrow... but it's hard. With Les, we had so much hope. We HAVE hope that Joe will overcome this... that the chemo will knock the cancer back... It was jumping a bit ahead of us again, but in just the last 3 treatments, his markers have come down another 100 points... from 250 to 150. It's about 2 x's what it was before it started going back up... but still better than the 250. We KNOW that with God, anything is possible... God is the Maker of Miracles... He can do anything, and we can do anything within Him. But some things aren't to be, and if it's His will that this is Joe's time... I just don't know what we're going to do when Joe can't work. I don't know if he can go ahead and apply for SSD now and quit working in 6 months, or whenever they approve it. I have to say, SSD IS a good thing, but it also stinks... They make you wait so long... figuring you might get better, or die, then they don't have to pay anything out on you. And if he quits working... there goes his insurance... and we're back to being the welfare people... I just don't know what to do or think anymore. Feeling like I'm beginning not to care anymore...
I sometimes think if we hadn't gone through so much drama and trauma in the past few years thanks to our lovely ex-dil and Daniel... That whole thing just sucked the life out of us. And we were still dealing with that when the cancer came up... Now that's kind of resolved itself, and Josh is in a bit of a pickle... Joe worries over him, but I tell him, Josh has got to make his own way. We'll help him as much as we can, but he has walked into his situation with his eyes wide open, much as Daniel did... and been told about what he's getting into, and he KNOWS it. HE is going to have to work this out. Without tying Joe and I up in it. We did what we could for 7 months, and it was the beginning of the Daniel/Bimbo thing all over again, so we stepped away from that QUICK! God willing, we've got a possibility of him a different job than the one he's working now. Got to get his app finished and get it to my friend's husband... Fingers crossed, he'll start around $14 an hour as an operator. He is going to HAVE to apply himself tho... not working with family anymore... And girl is going to have to get her butt in gear too, soon as he can get her car put back together. Get a REAL job.
Jobs... Lordy...
Well, going to get back to busy here... Chasey boy is coming tomorrow night after our Feb. BD bash... got to get some more stuff put away... Boy love... I can't wait! (*"*)
He gets home and goes in to change clothes... his legs are PURPLE! Looks like somebody beat him with a stick. OHMYGOSH! "I'm okay..." he says, says he... I go in the kitchen and I'm muttering... "Okay, if you're going to kill yourself, just do it... just get it over with, if you're going to die..." "Go ahead and call the doctor if you want to, but I'm NOT going to the hospital!" he says from the living room.
So, I call... I get the on call doc... "Hmmm... I can't imagine... Never heard of anything like that with any of the drugs he's taking... Hmmm..." I tell him, Joe reacts strangely to all of the chemicals... ask about it being a symptom of the hand and foot syndrome. He doesn't "think" so... he's going to read up on stuff and see if he can come up with anything. In the meantime, I've told him about our call in to OUR doc, with no response... I'm ticked... he seems ticked... Must have been, 'cause we no more than hung up and Dr. G called. "What's he doing now?" he says... He knows Joe... knows Joe's weird... I tell him what's going on. He says it IS weird, but doesn't seem to be life threatening, so just watch him... give him some Motrin for swelling (anti-inflammatory)... if it's hurt real bad, or gets worse (?!?!) either come down Tuesday for tests, or come in Wednesday on his lunch hour and let him look at it.
Well, Joe and I did some more reading ourselves... I, Doctor Suze, think it IS the hand and foot syndrome... one of the pamphlets talked about the severe discoloration due to constrictive clothes... heat... sweating... like might come from two pair of tube like socks... two pair of pants... That's my uneducated guess... Anyway, we do the "Motrin" for swelling... lotion up his legs and get his feet us. Seems to help...
THEN... dummy goes to work Tuesday and works... 10 1/2 hours! DUMMY! Comes home and can barely walk. Same as night before... get him in comfy clothes... ibuprofen for the swelling... lotion, and he is out like a trout. Out of the chair and into bed after a little bite to eat and his PM pills.
Wednesday morning... he gets up to pee... he's freezing, he says... check his temp... 101+. Tylenol... Email his coworker... he's going to be late... He can't get woke up... 1 hour, 2 hours... He calls Connie... he's not coming in. We're going to head to the doctor's office as soon as we can get around. I call the office, tell them we're coming in... We get there around 12:30, they take him back pretty quickly... The PA comes in, looks at him... orders labs... and comes back with the Doc. He checks him over... shaking his head... "What ARE you doing NOW?" lol! I think Joe perplexes him. He is NOT textbook, for sure. More labs. HE thinks Vasculitis. The chemicals causing the blood vessels to break down... Okay... could well be... he IS the doctor. Me, myself, and I STILL think it's part of the hand/foot thing. It started with the socks... the pants and belt pushing on his belly... THAT is where the discoloration started. He started wearing suspenders, and the discoloration on his belly is fading. His legs are starting to fade some... Still a LOT of edema... will NOT stay off his feet, or try to find a way to work with his feet up, even tho the Doc "prescribed" that (working with his feet on his desk).
Yesterday, he only put in 5-5 1/2 hours... about the same today... He's not going in until around 8:30... gives him another couple hours of sleep. Sleep is good. I don't know if he'll try to go in tomorrow at all or not. We're going to have a short check.
We've got to sit down this weekend and try to come up with a plan. May need to go ahead and try applying for SSD. It generally takes 6 months for it to go through. I don't know if he can make it another 6 months if this keeps up. And it seems the worse HE is getting, the worse I'm getting.
I have NEVER been a depressed person... Not to say I don't get blue when all of this starts getting to me, but typically, I can maintain a pretty positive outlook. When Les was sick, I belonged to the Hep C message board on WebMD. Met a lot of nice folks in the same, or similar boats. I think I ended up with Hep C overload... tho it was good to be able to talk to, vent to, people who knew where I was coming from. I could bitch and moan about things... compare notes... Some people were really sick, and their ugliness could really come out, but it was like a big Hep C family... I think with Les, tho... we had hope. REAL hope... He was really sick, but he was going to do the transplant and be better. It was a process... it was going to get worse before it would get better. But it WAS going to get better. We were fortunate that when he got put on the transplant list, the Navy put him on the TDRL (some sort of temporary retirement list) which gave us an income while we were awaiting his VA and SSD benefits to kick in. It was tight, and we did eventually have to file a Chapter 13, but we made it without too much todo.
With Joe... I don't know about a cancer support group. I feel like I am consumed with cancer. Cancer is my life. Everywhere I go, everything I do... I can't get away from it. There just is no normal anymore. It's all cancer. I don't have anywhere to go or anything to do to get away from it. Joe goes to work (he's back to driving my truck while the piece of crap beater he bought to drive sits in the driveway... he doesn't want me driving it because he's afraid it'll break down and I'll be stuck), and I'm here at home. I try to stay busy... to not think about things, and usually, I do pretty well. I try to refuse to give in to sadness and sorrow... but it's hard. With Les, we had so much hope. We HAVE hope that Joe will overcome this... that the chemo will knock the cancer back... It was jumping a bit ahead of us again, but in just the last 3 treatments, his markers have come down another 100 points... from 250 to 150. It's about 2 x's what it was before it started going back up... but still better than the 250. We KNOW that with God, anything is possible... God is the Maker of Miracles... He can do anything, and we can do anything within Him. But some things aren't to be, and if it's His will that this is Joe's time... I just don't know what we're going to do when Joe can't work. I don't know if he can go ahead and apply for SSD now and quit working in 6 months, or whenever they approve it. I have to say, SSD IS a good thing, but it also stinks... They make you wait so long... figuring you might get better, or die, then they don't have to pay anything out on you. And if he quits working... there goes his insurance... and we're back to being the welfare people... I just don't know what to do or think anymore. Feeling like I'm beginning not to care anymore...
I sometimes think if we hadn't gone through so much drama and trauma in the past few years thanks to our lovely ex-dil and Daniel... That whole thing just sucked the life out of us. And we were still dealing with that when the cancer came up... Now that's kind of resolved itself, and Josh is in a bit of a pickle... Joe worries over him, but I tell him, Josh has got to make his own way. We'll help him as much as we can, but he has walked into his situation with his eyes wide open, much as Daniel did... and been told about what he's getting into, and he KNOWS it. HE is going to have to work this out. Without tying Joe and I up in it. We did what we could for 7 months, and it was the beginning of the Daniel/Bimbo thing all over again, so we stepped away from that QUICK! God willing, we've got a possibility of him a different job than the one he's working now. Got to get his app finished and get it to my friend's husband... Fingers crossed, he'll start around $14 an hour as an operator. He is going to HAVE to apply himself tho... not working with family anymore... And girl is going to have to get her butt in gear too, soon as he can get her car put back together. Get a REAL job.
Jobs... Lordy...
Well, going to get back to busy here... Chasey boy is coming tomorrow night after our Feb. BD bash... got to get some more stuff put away... Boy love... I can't wait! (*"*)
Monday, February 15, 2010
Just when we were hoping for a break...
We got snow... and the power went out. All thoughts of being able to enjoy it went out the window. Yeah, it was beautiful, and if I could have sat on the porch with my cup of coffee and my blankie and stared at it, and then came back in and gotten warm, well, I'd have loved it more. As it was, the power was out for about 36 hours. Thank goodness our Friendly Neighbors have a propane fireplace. We took the birds and stayed over there Saturday night and yesterday until she and I went down the road and found us a power crew and got them to come fix us back up. Took them all of 5-10 minutes! And we were supposed to have been next on the list Saturday night just before 6, but they got called into town for supper and we somehow got lost in the shuffle before they called it quits around 10PM. ugh!
Anyway, today is back to normal... or as normal as we can be. Joe went to work for the first time in 3 weeks today. Don't know if he'll make a whole day or not, but he went on in at regular time. He's having some serious sides with this new chemo. It is T-totally breaking my heart. We are getting so upside down financially, we're about to have to file bankruptcy. Don't know what else to do. We'll have to get upright on our home equity loan... then just let the rest fly to the wind... Joe may have to file for SS Disability soon. I really don't know how we'll make it on what he'll get. I feel like a boob. I know everybody looks at me thinking I should be working, but between you, me and the doorknob, I've got some issues of my own going on... I'm thinking that maybe if I can get my proverbial "shit" together and get some of my crafting projects done, I may try to open an etsy account or something and sell my stuff there. Between my back, my head, and my wrist, I'm not having a lot of luck with anything nowadays. And worry about Joe is about to take me down to the mat.
I've said it before, and I'll say it again... He is my hero. Goes through so much and really rarely complains. Since he doesn't, I do it for him. We're both so tired... I don't know how much more of this either one of us can take. Physically, financially... we're both about done in.
It probably sounds ugly... and I've had people take me at my worst for saying things, but when we were in the hospital... and I was sitting there looking at Joe... all he was going through... I prayed that if it was his time, that God would just take him and end his suffering. Understand, I don't wish Joe dead. I love him so much, I don't want to go through life without him. But heaven help me, if it's only going to get worse and worse for him. I just can't stand it. It nearly killed me going through everything with Les. I sometimes really doubt myself about going through this with Joe. I think only someone who has walked in your shoes before ever knows exactly what's going on in your heart or mind, in any situation. In the case of quality vs quantity... I just don't know... If we could have more assurance that Joe was going to beat this thing... I'm just almost afraid this new treatment is going to kill him before the cancer would. It just breaks my heart to watch him... and it breaks his heart to have me watch him. He's all the time apologizing for putting me through this (again)... for putting us in dire straits financially... He just keeps on tho. At least with Les, we had a sort of an income while we were waiting for his disability to be approved... and when it was, given that the boys were young yet, I had a check, and they had checks which all gave us more to work with money-wise. Since it's just Joe and I... all we would get is his disability, which isn't much. Almost makes a body lean toward dishonestly... I could divorce him and get my VA benefits back... but even that would take a year (unless one of us wanted to claim the other had been stepping out... hahaha). Again... I'm thinking evil thoughts... Good thing beyond this earth we're not judged by a jury of our peers... God knows my heart tho... and my fears...
Anyway, just wanted to check in and let those who are interested know what's going on... which right now is not much of anything, but...
Now I have got to go write a letter or two, to people I'd rather not have to deal with, but do... Keep the prayers coming... they're needed now as much as ever. Hugs, (*"*)
Anyway, today is back to normal... or as normal as we can be. Joe went to work for the first time in 3 weeks today. Don't know if he'll make a whole day or not, but he went on in at regular time. He's having some serious sides with this new chemo. It is T-totally breaking my heart. We are getting so upside down financially, we're about to have to file bankruptcy. Don't know what else to do. We'll have to get upright on our home equity loan... then just let the rest fly to the wind... Joe may have to file for SS Disability soon. I really don't know how we'll make it on what he'll get. I feel like a boob. I know everybody looks at me thinking I should be working, but between you, me and the doorknob, I've got some issues of my own going on... I'm thinking that maybe if I can get my proverbial "shit" together and get some of my crafting projects done, I may try to open an etsy account or something and sell my stuff there. Between my back, my head, and my wrist, I'm not having a lot of luck with anything nowadays. And worry about Joe is about to take me down to the mat.
I've said it before, and I'll say it again... He is my hero. Goes through so much and really rarely complains. Since he doesn't, I do it for him. We're both so tired... I don't know how much more of this either one of us can take. Physically, financially... we're both about done in.
It probably sounds ugly... and I've had people take me at my worst for saying things, but when we were in the hospital... and I was sitting there looking at Joe... all he was going through... I prayed that if it was his time, that God would just take him and end his suffering. Understand, I don't wish Joe dead. I love him so much, I don't want to go through life without him. But heaven help me, if it's only going to get worse and worse for him. I just can't stand it. It nearly killed me going through everything with Les. I sometimes really doubt myself about going through this with Joe. I think only someone who has walked in your shoes before ever knows exactly what's going on in your heart or mind, in any situation. In the case of quality vs quantity... I just don't know... If we could have more assurance that Joe was going to beat this thing... I'm just almost afraid this new treatment is going to kill him before the cancer would. It just breaks my heart to watch him... and it breaks his heart to have me watch him. He's all the time apologizing for putting me through this (again)... for putting us in dire straits financially... He just keeps on tho. At least with Les, we had a sort of an income while we were waiting for his disability to be approved... and when it was, given that the boys were young yet, I had a check, and they had checks which all gave us more to work with money-wise. Since it's just Joe and I... all we would get is his disability, which isn't much. Almost makes a body lean toward dishonestly... I could divorce him and get my VA benefits back... but even that would take a year (unless one of us wanted to claim the other had been stepping out... hahaha). Again... I'm thinking evil thoughts... Good thing beyond this earth we're not judged by a jury of our peers... God knows my heart tho... and my fears...
Anyway, just wanted to check in and let those who are interested know what's going on... which right now is not much of anything, but...
Now I have got to go write a letter or two, to people I'd rather not have to deal with, but do... Keep the prayers coming... they're needed now as much as ever. Hugs, (*"*)
Saturday, February 6, 2010
We're home!
We've actually been home a couple of days now...
Wednesday morning after the night nurse had come in and done her whole rigamarow... the surgeon's assistant/student did the same... then the day nurse (JUST as his breakfast came in... so it sat there for nearly 30 mins. while she did the same thing the other 2 had done)... THEN the PA...
She asked Joe how he was doing, and he told her. He was MISERABLE... he'd tried for an hour to eat his breakfast, and people kept coming in interrupting. It was now cold again. He wanted to go HOME. People coming in all hours of the night poking and prodding... all throughout the day. Everytime he got his breakfast, lunch, or supper, somebody was coming in to do his vitals... hang meds... check his surgery spots... He just couldn't handle it anymore.
She must have seen he was really getting desperate, 'cause she went back out and checked his labs... came in and looked at his food intake... She said labs and vitals were all good, but the other... I told her if she let me take him home, I could get him to eat. I mean, they'd bring breakfast, and he'd get harassed... lunch, the same... supper, more of the same. Who could eat? When he DID have time and an appetite, there was nothing unless I went down and bought something, and that was getting $$$.
She agreed to cut him loose after she had two more meds hung. YAY! They were going to take two hours. Wah! So, we had to wait for the pharmacy to send the stuff up... then the nurse got lost... Finally got it hung around noon, so we figured by 2:15-2:30, we'd be out of there. Well, they wanted to drain the bags... so that was 2:15... then to get the nurse to come in and disconnect him... pull his needles... 2:30. She called for transport while she was doing that, so I grabbed what I could carry and headed out to find the truck (after nearly 2 weeks, I wasn't sure where I'd parked anymore... LOL!). I got down to the pick up area and called him to let him know I was there... he was still waiting... I made a couple of calls... called him back... they'd just called down again. Another couple of calls... called again... STILL waiting. After 45 mins total, I was about ready to go get a wheelchair and get him myself. I called back up one last time, he said they'd called a 3rd time, but oh, wait... Christine, the cleaning lady, was coming with a wheelchair and a cart in tow. She'd been going by to see if she could get in to clean and saw him sitting there time and again, and she got HOT. She went down to transport and told them they had a guy sitting up there waiting for somebody... what the heck where they doing? One said they were just headed out... the other said their shift was over too... She said she wasn't letting Joe sit there any longer, so she just did their job herself.
She was such a sweetheart the whole time we were there... bright and cheerful every morning she came in to straighten up. When she'd seen me call for linens and the like a couple of times and have to wait for one of the techs or nurses to get to me, she took me out and showed me where everything was.
The lunch lady was a doll too... Every morning, she'd bring me a blueberry muffin with Joe's breakfast. She was also bringing an extra tray most meals, so if I wanted something... tho Joe and I were sharing most of his meals.
Most all of the nurses and techs were really, really nice. We must have been the most fun patients on the ward, 'cause everybody was coming back to hang out with us. LOL! The night Joe spent in ICU, they set me up in a family room down the hall from the cancer ward (THAT was a little spooky, but I was about too tired to care!). When I ran out of clothes, they hooked me up with the washer and dryer down there too. The first night we were back in the ward, the nurse on duty snatched me a cot so that I didn't have to sleep in one of the reclining chairs. I can tell ya'. I'd never have made it all those nights in that recliner.
I hope we blessed as much as we were blessed. Joe was walking, talking inspiration to the staff. We handed out about 25 New Testments to the staff, and a few personal witness testaments too. As stinkin' as it was to have to have gone through all that, God was right there with us... We couldn't have gotten through it otherwise.
I'll tell ya', some moments had both Joe and I shakin' in our shoes. The bloody diarrhea, and then all the infusions... Then the power puking... Joe said he was afraid he wasn't coming home a few times. Me too. That's why I wasn't leaving him. I was too scared... afraid I'd get away, and then get a call.
It's good to be past the worst of that little adventure. He's still on meds... the shunt that Dr. W put in still isn't working 100%. They said he has a lot of air in his tum, as well as some fluid... just taking a bit of time for all of it to work it's way through. That's what some of the meds he's taking are for.
Joe's not planning on heading back to work until Thursday... We've got a check up and possible chemo appointment Wednesday... Until then, we're just working at getting his nutrition back up... and his strength. He's done real good the last couple of days eating and getting around. God willing, by Thursday, he'll be ready to get back to it.
We've been fortunate with Joe's work as well... the company itself hasn't done anything, but the people Joe works with have all donated time... been calling to check on him... I'm not tremendously impressed with the company, but his co-workers are all a great bunch of people. One guy donated a full 3 days of his time off. They don't get a whole lot, so that's pretty major.
Our "friend" at Boeing... not so sure about what's going on there... Since Joe's been working there, he's been saying that he's going to get Joe on direct... It's been over 2 years. Most of those, Joe's been working with a Stage IV cancer diagnosis, going through chemo, all this other stuff... He's been given 100% more work than he started with... totally redid the whole area he works in, and has only been given a $1 an hour raise. To put it nicely, it sucks. Joe gives his all at work. 200%. We've always been good friends with Tony and Au, but that's kind of cooled... I can't be friendly with somebody who dangles a job and more pay in front of Joe's nose like a carrot, and then never comes through.
We're sitting here struggling to pay our bills... going through hell with Joe's health... There are those who could just say the word and Joe would be a Boeing employee, and yet they do nothing. They've all got their big fat salaries... their nice vehicles... big houses... They don't have to worry about being able to pay their electric bills or buying groceries. Every month, we just get further and further behind. If it wasn't for Joe's cancer, I'd have been encouraging him to go elsewhere for work. But when you have a chronic/terminal illness, you don't want to be job hopping... and that would be even if he COULD find another job. Just not a lot of them out there, ya' know? So, we deal with creditors calling, threatening... while the Big Dogs live large. Joe's taken a big load off of them with their jobs, but he gets piddly for it. Shouldn't be so... especially since the company he works for got a raise to give him a bigger raise just 3 months after he started... BS.
Oh well, life goes on... and God goes with us... Just have to keep trusting Him to keep us afloat. (*"*)
Wednesday morning after the night nurse had come in and done her whole rigamarow... the surgeon's assistant/student did the same... then the day nurse (JUST as his breakfast came in... so it sat there for nearly 30 mins. while she did the same thing the other 2 had done)... THEN the PA...
She asked Joe how he was doing, and he told her. He was MISERABLE... he'd tried for an hour to eat his breakfast, and people kept coming in interrupting. It was now cold again. He wanted to go HOME. People coming in all hours of the night poking and prodding... all throughout the day. Everytime he got his breakfast, lunch, or supper, somebody was coming in to do his vitals... hang meds... check his surgery spots... He just couldn't handle it anymore.
She must have seen he was really getting desperate, 'cause she went back out and checked his labs... came in and looked at his food intake... She said labs and vitals were all good, but the other... I told her if she let me take him home, I could get him to eat. I mean, they'd bring breakfast, and he'd get harassed... lunch, the same... supper, more of the same. Who could eat? When he DID have time and an appetite, there was nothing unless I went down and bought something, and that was getting $$$.
She agreed to cut him loose after she had two more meds hung. YAY! They were going to take two hours. Wah! So, we had to wait for the pharmacy to send the stuff up... then the nurse got lost... Finally got it hung around noon, so we figured by 2:15-2:30, we'd be out of there. Well, they wanted to drain the bags... so that was 2:15... then to get the nurse to come in and disconnect him... pull his needles... 2:30. She called for transport while she was doing that, so I grabbed what I could carry and headed out to find the truck (after nearly 2 weeks, I wasn't sure where I'd parked anymore... LOL!). I got down to the pick up area and called him to let him know I was there... he was still waiting... I made a couple of calls... called him back... they'd just called down again. Another couple of calls... called again... STILL waiting. After 45 mins total, I was about ready to go get a wheelchair and get him myself. I called back up one last time, he said they'd called a 3rd time, but oh, wait... Christine, the cleaning lady, was coming with a wheelchair and a cart in tow. She'd been going by to see if she could get in to clean and saw him sitting there time and again, and she got HOT. She went down to transport and told them they had a guy sitting up there waiting for somebody... what the heck where they doing? One said they were just headed out... the other said their shift was over too... She said she wasn't letting Joe sit there any longer, so she just did their job herself.
She was such a sweetheart the whole time we were there... bright and cheerful every morning she came in to straighten up. When she'd seen me call for linens and the like a couple of times and have to wait for one of the techs or nurses to get to me, she took me out and showed me where everything was.
The lunch lady was a doll too... Every morning, she'd bring me a blueberry muffin with Joe's breakfast. She was also bringing an extra tray most meals, so if I wanted something... tho Joe and I were sharing most of his meals.
Most all of the nurses and techs were really, really nice. We must have been the most fun patients on the ward, 'cause everybody was coming back to hang out with us. LOL! The night Joe spent in ICU, they set me up in a family room down the hall from the cancer ward (THAT was a little spooky, but I was about too tired to care!). When I ran out of clothes, they hooked me up with the washer and dryer down there too. The first night we were back in the ward, the nurse on duty snatched me a cot so that I didn't have to sleep in one of the reclining chairs. I can tell ya'. I'd never have made it all those nights in that recliner.
I hope we blessed as much as we were blessed. Joe was walking, talking inspiration to the staff. We handed out about 25 New Testments to the staff, and a few personal witness testaments too. As stinkin' as it was to have to have gone through all that, God was right there with us... We couldn't have gotten through it otherwise.
I'll tell ya', some moments had both Joe and I shakin' in our shoes. The bloody diarrhea, and then all the infusions... Then the power puking... Joe said he was afraid he wasn't coming home a few times. Me too. That's why I wasn't leaving him. I was too scared... afraid I'd get away, and then get a call.
It's good to be past the worst of that little adventure. He's still on meds... the shunt that Dr. W put in still isn't working 100%. They said he has a lot of air in his tum, as well as some fluid... just taking a bit of time for all of it to work it's way through. That's what some of the meds he's taking are for.
Joe's not planning on heading back to work until Thursday... We've got a check up and possible chemo appointment Wednesday... Until then, we're just working at getting his nutrition back up... and his strength. He's done real good the last couple of days eating and getting around. God willing, by Thursday, he'll be ready to get back to it.
We've been fortunate with Joe's work as well... the company itself hasn't done anything, but the people Joe works with have all donated time... been calling to check on him... I'm not tremendously impressed with the company, but his co-workers are all a great bunch of people. One guy donated a full 3 days of his time off. They don't get a whole lot, so that's pretty major.
Our "friend" at Boeing... not so sure about what's going on there... Since Joe's been working there, he's been saying that he's going to get Joe on direct... It's been over 2 years. Most of those, Joe's been working with a Stage IV cancer diagnosis, going through chemo, all this other stuff... He's been given 100% more work than he started with... totally redid the whole area he works in, and has only been given a $1 an hour raise. To put it nicely, it sucks. Joe gives his all at work. 200%. We've always been good friends with Tony and Au, but that's kind of cooled... I can't be friendly with somebody who dangles a job and more pay in front of Joe's nose like a carrot, and then never comes through.
We're sitting here struggling to pay our bills... going through hell with Joe's health... There are those who could just say the word and Joe would be a Boeing employee, and yet they do nothing. They've all got their big fat salaries... their nice vehicles... big houses... They don't have to worry about being able to pay their electric bills or buying groceries. Every month, we just get further and further behind. If it wasn't for Joe's cancer, I'd have been encouraging him to go elsewhere for work. But when you have a chronic/terminal illness, you don't want to be job hopping... and that would be even if he COULD find another job. Just not a lot of them out there, ya' know? So, we deal with creditors calling, threatening... while the Big Dogs live large. Joe's taken a big load off of them with their jobs, but he gets piddly for it. Shouldn't be so... especially since the company he works for got a raise to give him a bigger raise just 3 months after he started... BS.
Oh well, life goes on... and God goes with us... Just have to keep trusting Him to keep us afloat. (*"*)
Monday, February 1, 2010
Sorry...
ohmygosh...
i told our oncologist's PA earlier, they have to let joe out so i can take him home just to get him well.
we went from the bloody diarrhea, which they got control of pretty quick... got him down to the 5th floor, and he was feeling perky, and we were hopeful for a short stay.
then he started projectile vomiting stomach bile. that went on for most of a day, then they sent him down for a CT... supposedly showed a blockage in the small intestine... (i say supposedly, as the surgeon said he never thought blockage, but more infection akin to what they found in joe's colon... but the oncologist apparently didn't completely agree, tho he never really said exactly what he thought HE saw. the GI doc was saying blockage, but he was basing his findings on what the surgeon supposedly saw, which in the records say "blockage, per dr. w", but dr. w said no blockage... more like inflammation... ?!?!?) that led to him getting a NG tube through his nose into his stomach for a couple days... pumping the bile out to relieve pressure in his stomach so the "whatever" would hopefully clear. added a 2nd antibiotic...
after another day and a 1/2 (?), nobody had done anything toward trying to figure out what was going on down below, so the surgeon finally ordered an xray... and made the executive decision to pull the tube. everything held... no more vomiting... joe was able to start eating... still some loose, watery stools, but no more bleeding...
we were JUST thinking we'd get turned loose today... and all of the on call docs were in agreement... and last night they came in and said that joe's acid content was off... so they started him on a drip of basically baking soda water... and a couple of tabs that are basically the same (sodium bicarbonate)... that seemed to start working really quickly... and so still hoping... maybe tomorrow?
then this morning, joe was running a bit of a fever... 101 something... he's not been peeing a whole lot, so they draw labs... get a urine sample... maybe a kidney or bladder issue... so they change one of the antibiotics for another... and on we go.
i swear, being in the hospital is nowhere to be if you're sick or well. on top of everything else, joe's fighting a bedsore, the air in here is so dry, my sinuses are dried out... his sinuses are dried out... my nerves are shot...
there is nowhere to go, nothing to do here... we get out and do a few laps a day, but still. otherwise, just basically stuck in this little room. i COULD go home... maybe should go home, but folks come in and talk to joe while he's napping, while i'm out getting lunch, or a drink... and he doesn't remember who, or what was said... i don't not want to know what's going on. having enough trouble getting the drs. to coordinate...
i don't know what we're going to do, either, if he doesn't get out of here soon... he's going to have to have a few days at home to rest and regain himself from this week and 1/2 hospital stay. he's only covered for a few more days of time off (the guys at work have all donated PTO to joe... covering nearly 2 weeks time). his CPS boss said he could go on short term disability... but that's just 65% of his pay. we couldn't live on that for very long. well, more honestly, we just couldn't live on it period. we're running out of money before month already. i'm trying really hard to not feel bitter toward our friend, joe's bigger boss, for all this boeing BS. if they'd have hired joe on, and he was making what he should be, then it might be doable, but not at the measly $16 an hour he's getting now. that whole pay thing has just become a real sore subject with me. a year and 1/2 ago, the company joe works for wheedled out of giving him the raise that he'd been told he was going to get. then tony and eric have been dangling the vought/boeing job thing in front of joe's nose like a carrot, and have yet to come through for him. they could have even pushed the issue on joe's raise, but didn't. we're on a sinking ship, and there is just no sign of a life boat.
i know God is in control... and that we have to live with whatever His will is for us in all of this... but i've been here before, and it's no more pleasant the 2nd time around. it's really hard to watch your husband basically slipping away in front of your very eyes. not good, not good at all. just praying that God will give me grace and understanding... i'm running in short supply right now.
i told our oncologist's PA earlier, they have to let joe out so i can take him home just to get him well.
we went from the bloody diarrhea, which they got control of pretty quick... got him down to the 5th floor, and he was feeling perky, and we were hopeful for a short stay.
then he started projectile vomiting stomach bile. that went on for most of a day, then they sent him down for a CT... supposedly showed a blockage in the small intestine... (i say supposedly, as the surgeon said he never thought blockage, but more infection akin to what they found in joe's colon... but the oncologist apparently didn't completely agree, tho he never really said exactly what he thought HE saw. the GI doc was saying blockage, but he was basing his findings on what the surgeon supposedly saw, which in the records say "blockage, per dr. w", but dr. w said no blockage... more like inflammation... ?!?!?) that led to him getting a NG tube through his nose into his stomach for a couple days... pumping the bile out to relieve pressure in his stomach so the "whatever" would hopefully clear. added a 2nd antibiotic...
after another day and a 1/2 (?), nobody had done anything toward trying to figure out what was going on down below, so the surgeon finally ordered an xray... and made the executive decision to pull the tube. everything held... no more vomiting... joe was able to start eating... still some loose, watery stools, but no more bleeding...
we were JUST thinking we'd get turned loose today... and all of the on call docs were in agreement... and last night they came in and said that joe's acid content was off... so they started him on a drip of basically baking soda water... and a couple of tabs that are basically the same (sodium bicarbonate)... that seemed to start working really quickly... and so still hoping... maybe tomorrow?
then this morning, joe was running a bit of a fever... 101 something... he's not been peeing a whole lot, so they draw labs... get a urine sample... maybe a kidney or bladder issue... so they change one of the antibiotics for another... and on we go.
i swear, being in the hospital is nowhere to be if you're sick or well. on top of everything else, joe's fighting a bedsore, the air in here is so dry, my sinuses are dried out... his sinuses are dried out... my nerves are shot...
there is nowhere to go, nothing to do here... we get out and do a few laps a day, but still. otherwise, just basically stuck in this little room. i COULD go home... maybe should go home, but folks come in and talk to joe while he's napping, while i'm out getting lunch, or a drink... and he doesn't remember who, or what was said... i don't not want to know what's going on. having enough trouble getting the drs. to coordinate...
i don't know what we're going to do, either, if he doesn't get out of here soon... he's going to have to have a few days at home to rest and regain himself from this week and 1/2 hospital stay. he's only covered for a few more days of time off (the guys at work have all donated PTO to joe... covering nearly 2 weeks time). his CPS boss said he could go on short term disability... but that's just 65% of his pay. we couldn't live on that for very long. well, more honestly, we just couldn't live on it period. we're running out of money before month already. i'm trying really hard to not feel bitter toward our friend, joe's bigger boss, for all this boeing BS. if they'd have hired joe on, and he was making what he should be, then it might be doable, but not at the measly $16 an hour he's getting now. that whole pay thing has just become a real sore subject with me. a year and 1/2 ago, the company joe works for wheedled out of giving him the raise that he'd been told he was going to get. then tony and eric have been dangling the vought/boeing job thing in front of joe's nose like a carrot, and have yet to come through for him. they could have even pushed the issue on joe's raise, but didn't. we're on a sinking ship, and there is just no sign of a life boat.
i know God is in control... and that we have to live with whatever His will is for us in all of this... but i've been here before, and it's no more pleasant the 2nd time around. it's really hard to watch your husband basically slipping away in front of your very eyes. not good, not good at all. just praying that God will give me grace and understanding... i'm running in short supply right now.
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