Well, almost.
Our furnace wouldn't go on and it was freezing. Actually our wonderful brother changed a switch on our furnace that was on the verge of shortening out and it turns out the new switch didn't work at all. But THANK GOD that was all done in the same day, otherwise, the furnace would not have turned on like it is programmed to and our pipes would have froze and....
But wonderful Tom came and put another swith in. Thanks Tom.
I've been working nonstop. It took me 4 hours to pack the van for the trip home, and Mark and Kim helped me unload and begin to unpack all THE WONDERFUL THINGS PEOPLE SENT ME. THANKS PEOPLE. It took me an hour just to get Jim's meds ready for him. Then Kim and Mark after working nonstop, too, flushes the toilet and waaaaaalaaaaaaa. It's leaking.
Do I have a target on my head? Really. Leah, did you catch that? :)
We think it's the wax ring and Mark can fix that (i sure hope so). But it made me think. How the heck am I moving somewhere for 6 months. And how am I getting everything that I need to get done, done in the 8 days I'm home.
CALGONE....
Well, here's some good news. I used my sonic toothbrush and am in heaven. Tomorrow I'm going to pluck my eyebrows. Sweet. Heck. I might go all the way and shave my legs, now that I have my razors. Life is good in Pittsburgh.
We're home.
I probably won't have time to see anyone, or do anything fun, but I'm home. :)
Tuesday, December 30, 2008
Monday, December 29, 2008
Still Christmas here
Hi All:
Well, we didn't leave today. Maybe tomorrow. I'm glad we didn't leave today though, cause Santa postman came today, and boy did we have fun.
You know the cell group we belong to, you know the one. I've mentioned it before. We've belonged to it for a year now and have never gone to a meeting, well, they sent us a big box of goodies. THANKS GUYS. Wow. It was sooooooooooooooooo much fun. I don't know where to start. Yummie cookies, yummie cookies, candy. And 10 fruit trees. Mangos. yum. But we don't get to eat them. They're not for the greenhouse. It's one of those Samaritan Purse gifts. I wanted to do that this year for a few people, but never got there. Anyway, there were candles and socks, and a beautiful scarf for me, and WONDERFULLY FUNNY and warm pillowcases. Amy and Elena made fleece pillowcases with beautiful fabric. The funny part is the way they were wrapped. A beautiful pink and green "garden" pillowcase, with handmade tags, made especially for Jim. Well, I laughed, and thought maybe her husband was there at Passavant when the nurses were teasing Jim about his girly pillowcase, so Amy wanted to really rub it in. And then I got one, too. WITH FISHING MOTIFS. Hmmmm I like to fish. I'm keeping it. Jim gets the girly one. ;) There were books, CDs, A Christmas Story DVD, etc.
Anyway, home group. Thank you so much. What a blessing you have been to us. Thank you so much for your care and love and generosity. I'm glad we were here to get more love in the mail. From the card, it seems the cell group is growing? I hope we don't split before we get to come... I think if we come home, we can come finally, or at least maybe host it. I'LL PROVIDE THE COOKIES. ;)
HOW DO I THANK ANY OF YOU. THERE IS NOT ENOUGH SPACE TO WRITE HOW THE MANY PEOPLE HAVE BLESSED US. We are overwhelmed. I could never NEVET DO THANK YOU CARDS. It would take me a week to write thank you to 1 person, as most people who are reading this has done soooooooooooooooooo much. I'm just at a loss of words.
I feel SO NOT WORTHY of all this love. All I can think is, it must be Jim.
Anyway, we might leave for home tomorrow. I sure hope so.
Jim and Gloria.
Well, we didn't leave today. Maybe tomorrow. I'm glad we didn't leave today though, cause Santa postman came today, and boy did we have fun.
You know the cell group we belong to, you know the one. I've mentioned it before. We've belonged to it for a year now and have never gone to a meeting, well, they sent us a big box of goodies. THANKS GUYS. Wow. It was sooooooooooooooooo much fun. I don't know where to start. Yummie cookies, yummie cookies, candy. And 10 fruit trees. Mangos. yum. But we don't get to eat them. They're not for the greenhouse. It's one of those Samaritan Purse gifts. I wanted to do that this year for a few people, but never got there. Anyway, there were candles and socks, and a beautiful scarf for me, and WONDERFULLY FUNNY and warm pillowcases. Amy and Elena made fleece pillowcases with beautiful fabric. The funny part is the way they were wrapped. A beautiful pink and green "garden" pillowcase, with handmade tags, made especially for Jim. Well, I laughed, and thought maybe her husband was there at Passavant when the nurses were teasing Jim about his girly pillowcase, so Amy wanted to really rub it in. And then I got one, too. WITH FISHING MOTIFS. Hmmmm I like to fish. I'm keeping it. Jim gets the girly one. ;) There were books, CDs, A Christmas Story DVD, etc.
Anyway, home group. Thank you so much. What a blessing you have been to us. Thank you so much for your care and love and generosity. I'm glad we were here to get more love in the mail. From the card, it seems the cell group is growing? I hope we don't split before we get to come... I think if we come home, we can come finally, or at least maybe host it. I'LL PROVIDE THE COOKIES. ;)
HOW DO I THANK ANY OF YOU. THERE IS NOT ENOUGH SPACE TO WRITE HOW THE MANY PEOPLE HAVE BLESSED US. We are overwhelmed. I could never NEVET DO THANK YOU CARDS. It would take me a week to write thank you to 1 person, as most people who are reading this has done soooooooooooooooooo much. I'm just at a loss of words.
I feel SO NOT WORTHY of all this love. All I can think is, it must be Jim.
Anyway, we might leave for home tomorrow. I sure hope so.
Jim and Gloria.
Sunday, December 28, 2008
Pre New Year Post
Well, Jim doesn't have C-dif, but we knew that because we knew it was the flu, but it's still good to know.
It could have been food poisening. Jim had gotten a pass to go out, and we went out to lunch for the first time in about 5 months. We went to PF Changs. We both started to not feel so well, but I don't know if it was that or the flu. I guess we'll know if John or Leah gets sick. I don't want to blame in on a restaurant if it's not, but you can bet we won't go back there.
Anyway, I'll let you know, as soon as I know, when we are getting out.
Sounds like I'm talking about jail. LOL.
Anyway, I stopped New Year's Resolutions years ago. I'm afraid to have hopes for a happy new year and afraid to not have hopes for a happy new year. I think we'll just go to bed. But the year 2008 was not a friendly one, for sure.
It could have been food poisening. Jim had gotten a pass to go out, and we went out to lunch for the first time in about 5 months. We went to PF Changs. We both started to not feel so well, but I don't know if it was that or the flu. I guess we'll know if John or Leah gets sick. I don't want to blame in on a restaurant if it's not, but you can bet we won't go back there.
Anyway, I'll let you know, as soon as I know, when we are getting out.
Sounds like I'm talking about jail. LOL.
Anyway, I stopped New Year's Resolutions years ago. I'm afraid to have hopes for a happy new year and afraid to not have hopes for a happy new year. I think we'll just go to bed. But the year 2008 was not a friendly one, for sure.
Post Christmas Update
So, I thought it was a good idea to see the National Christmas Tree with John and Leah Christmas night after we wore Jim out. Before we left, I wasn't feeling well, but went anyway.
I got car sick on the drive, and my Cold Urticaria was killing me, but we walked around the White House and saw the tree...After the bike cop held the flashlight so that John could change his flat tire, (which he had to replace...another unforeseen cost of this visit) we drove home, and that's when I knew it wasn't car sickness.
Without a second to spare, John pulled over on the main drag and I projectile vomited all over the lawn of the Naval Medical Center. I'm sure Big brother was watching. At least I spared the leather seats of their Volvo.
It turns out that it wasn't the chemo that had Jim vomiting and diarrheaing the whole night before Christmas and all through the NIH. And it wasn't chemo that had me doing the same thing on the roadside and all through the night and the next day at the lodge and unfortunately even today. Although I'm feeling much better. But the cramps in my stomach feels like I did 5000 situps and then someone kicked me in the stomach.
So, John and Leah had to go to a hotel and leave the Lodge so they didn't get sick. (Another unplanned expense for them) Fortunately nobody was around and I was allowed to stay at the lodge as long as I didn't tell anyone that Jim was being tested for C-dif, and that I stayed quaranteened in my room. The high temp and body chills just added to the festivities. I actually got it worse than Jim, for which I am thankful, because he's had enough.
I think there are 2 patients on the whole floor, and no docs to be seen. Everyone is gone, and I don't think Jim will be released because there is no one here to release him. I couldn't drive home yet anyway, as I am too weak...
And how was your Christmas???
I got car sick on the drive, and my Cold Urticaria was killing me, but we walked around the White House and saw the tree...After the bike cop held the flashlight so that John could change his flat tire, (which he had to replace...another unforeseen cost of this visit) we drove home, and that's when I knew it wasn't car sickness.
Without a second to spare, John pulled over on the main drag and I projectile vomited all over the lawn of the Naval Medical Center. I'm sure Big brother was watching. At least I spared the leather seats of their Volvo.
It turns out that it wasn't the chemo that had Jim vomiting and diarrheaing the whole night before Christmas and all through the NIH. And it wasn't chemo that had me doing the same thing on the roadside and all through the night and the next day at the lodge and unfortunately even today. Although I'm feeling much better. But the cramps in my stomach feels like I did 5000 situps and then someone kicked me in the stomach.
So, John and Leah had to go to a hotel and leave the Lodge so they didn't get sick. (Another unplanned expense for them) Fortunately nobody was around and I was allowed to stay at the lodge as long as I didn't tell anyone that Jim was being tested for C-dif, and that I stayed quaranteened in my room. The high temp and body chills just added to the festivities. I actually got it worse than Jim, for which I am thankful, because he's had enough.
I think there are 2 patients on the whole floor, and no docs to be seen. Everyone is gone, and I don't think Jim will be released because there is no one here to release him. I couldn't drive home yet anyway, as I am too weak...
And how was your Christmas???
Tuesday, December 23, 2008
Jim's health, answers to question, thank yous, and a bit of me rambling
Hi Everyone:
Jim first.
He's not doing so well. Lots of pain, from the neupogen shot from low white blood cells. His red are probably down too, but you have to be mostly drained before they give you blood here because of low levels. Pray for him, that he will feel a bit better. John and Leah are coming tomorrow, and he would like to be able to smile, rather than moan at them. Poor guy. Despite him doing better, it's very hard to see him like this. I remember last Christmas how much pain he was in. He went back into the hospital the day after Christmas. I think that's when Jim will be at his lowest point this year as well, with this treatment. We do hope afterwards we can come home.
Pray for me, too. One of the things I was moaning about the past few days, that I didn't mention is that I have impetigo on my face. I had it last year, December 12th to be exact. Caught it at the hospital too. I had to find a pharmacy, have my doctor phone in a prescription, blah blah blah. So, I'm under the weather a bit myself fighting off this nasty infection feeling like that guy in Princess Bride who ran the Pit of Despair. Remember him, with the nasty sores on his mouth. I need my sister here saying, "Quit picking your nails. Quit biting your nails." "Quit rubbing your face."
Thank you.
Thank you to all friends and family and our church who have sent your love to us while we have been here. No matter what form it arrived in, it has touched our hearts. Really. Despite my moaning. We have been so blessed by everyone's outreach to us. We don't think we could have handled it half as well as we have without it. We mean it from the bottom of our hearts.
Jesus, Bible and Feelings
I really appreciate everybody's input, I really do. And it blesses me, too. It does. I just feel out loud often, and when I do, I hate it. But I'm not going to beat myself up. I put to words, what often other people feel, but won't say or write. I know I'm not alone. I put a huge price on truth, and that's why I struggle so much when my feelings don't line up with the truth. I will never throw the truth out (God, God's word) , but I find myself not being able to throw away my feelings either, and I end up in turmoil. So, I had a spiritual temper tantrum. That's what I call it. It's been a while since I've had one. Self pity is the fuel that gets the spiritual temper tantrum going. I used to be way worse. Nobody knows more than my friend Elaine. Huh, Elaine. There I was, this huge pendulum swinging this way and then that way, extreme this way and that way. I used to drive her nuts. I'm way good now. ;) Actually, it's not something I am ashamed of or that I will apologize for. It's who I am, and God's working on me. I might leave you crazy, but I'll never leave you bored. ;)
And you know what...I appreciate your input still, cause it lets me know you love me and care for me, so thanks guys, even though I did threaten you with your eyeballs.
Bathroom Answers
Amy, I wet myself.
Kristen, tell Lar thanks, but I don't need the pot. I wet myself. LOL.
10 years ago
Jim said, "you are a fishing man's dream."
I asked, "why hon, cause I catch so many fish?"
He said, "no, it's because I can take you out on the boat, and you're good for 8 hours."
So, there's your answer.
Or it could that that maybe I borrowed one of Jim's Depends. LOL. Just kidding. No, Jim has not used Depends yet. He would kill me if I left you all thinking that. When one nurse suggested it, he said, "I'll never be that sick."
Okay, this conversation is going down the toilet....now how do I transition to Merry Christmas everyone? I guess I'll just go for it.
Merry Christmas everyone. In case I can't write, and I'm sure you will all be busy with your loved ones as well. Merry Christmas. Christmas really is in the heart. Thank you all for helping it arrive in our hearts through your love.
Love Jim and Gloria (Dolly)
Jim first.
He's not doing so well. Lots of pain, from the neupogen shot from low white blood cells. His red are probably down too, but you have to be mostly drained before they give you blood here because of low levels. Pray for him, that he will feel a bit better. John and Leah are coming tomorrow, and he would like to be able to smile, rather than moan at them. Poor guy. Despite him doing better, it's very hard to see him like this. I remember last Christmas how much pain he was in. He went back into the hospital the day after Christmas. I think that's when Jim will be at his lowest point this year as well, with this treatment. We do hope afterwards we can come home.
Pray for me, too. One of the things I was moaning about the past few days, that I didn't mention is that I have impetigo on my face. I had it last year, December 12th to be exact. Caught it at the hospital too. I had to find a pharmacy, have my doctor phone in a prescription, blah blah blah. So, I'm under the weather a bit myself fighting off this nasty infection feeling like that guy in Princess Bride who ran the Pit of Despair. Remember him, with the nasty sores on his mouth. I need my sister here saying, "Quit picking your nails. Quit biting your nails." "Quit rubbing your face."
Thank you.
Thank you to all friends and family and our church who have sent your love to us while we have been here. No matter what form it arrived in, it has touched our hearts. Really. Despite my moaning. We have been so blessed by everyone's outreach to us. We don't think we could have handled it half as well as we have without it. We mean it from the bottom of our hearts.
Jesus, Bible and Feelings
I really appreciate everybody's input, I really do. And it blesses me, too. It does. I just feel out loud often, and when I do, I hate it. But I'm not going to beat myself up. I put to words, what often other people feel, but won't say or write. I know I'm not alone. I put a huge price on truth, and that's why I struggle so much when my feelings don't line up with the truth. I will never throw the truth out (God, God's word) , but I find myself not being able to throw away my feelings either, and I end up in turmoil. So, I had a spiritual temper tantrum. That's what I call it. It's been a while since I've had one. Self pity is the fuel that gets the spiritual temper tantrum going. I used to be way worse. Nobody knows more than my friend Elaine. Huh, Elaine. There I was, this huge pendulum swinging this way and then that way, extreme this way and that way. I used to drive her nuts. I'm way good now. ;) Actually, it's not something I am ashamed of or that I will apologize for. It's who I am, and God's working on me. I might leave you crazy, but I'll never leave you bored. ;)
And you know what...I appreciate your input still, cause it lets me know you love me and care for me, so thanks guys, even though I did threaten you with your eyeballs.
Bathroom Answers
Amy, I wet myself.
Kristen, tell Lar thanks, but I don't need the pot. I wet myself. LOL.
10 years ago
Jim said, "you are a fishing man's dream."
I asked, "why hon, cause I catch so many fish?"
He said, "no, it's because I can take you out on the boat, and you're good for 8 hours."
So, there's your answer.
Or it could that that maybe I borrowed one of Jim's Depends. LOL. Just kidding. No, Jim has not used Depends yet. He would kill me if I left you all thinking that. When one nurse suggested it, he said, "I'll never be that sick."
Okay, this conversation is going down the toilet....now how do I transition to Merry Christmas everyone? I guess I'll just go for it.
Merry Christmas everyone. In case I can't write, and I'm sure you will all be busy with your loved ones as well. Merry Christmas. Christmas really is in the heart. Thank you all for helping it arrive in our hearts through your love.
Love Jim and Gloria (Dolly)
Today's drama
After the water shutting off in the middle of my shower, yes....soaped up, cold water dribbled out so I could get semi-rinsed, I followed the GPS, in insane traffic, to a grocery store that was no longer there, only to then go in the opposite direction, in insane traffic, to another food store, which was Whole Foods, which I could not afford, I went in another direction, in insane traffic, to go to another store to buy outrageously priced groceries. By this time, I had to go to the bathroom really really bad, but I had to get Jim a gyro. He's been craving one. So I drove in insane traffic, back to Bethesda to the gyro place, to see the sign that says, "We will be closed today." Now, I sit in insane traffic, really having to go to the bathroom, to go back to the Lodge to put my 9.00 a pound land o' lakes american cheese and such in the fridge. Ran up to the room....and we can't use the bathroom cause there is no water, still.
Watermain break, major....and they have no idea how long there will be no water.
HO HO HO
And so, after 20 months of this kind of crap, not to mention the 45 years of crap that led up to this, I am to continue to believe that God loves me. hmmmmmmmmmmmmm. I'm having trouble believing he even likes me.
I'm just kidding folks....kinda
Watermain break, major....and they have no idea how long there will be no water.
HO HO HO
And so, after 20 months of this kind of crap, not to mention the 45 years of crap that led up to this, I am to continue to believe that God loves me. hmmmmmmmmmmmmm. I'm having trouble believing he even likes me.
I'm just kidding folks....kinda
Monday, December 22, 2008
BP Okay
Hi everyone:
Didn't mean to scare anyone. Jim's BP was okay after they did it the old fashioned way. It was still high, but not dangerously high, like the first BP indicated.
Anyway, I went to bed in better spirits. I know this is not going to be a quick fix for me. But I'm glad to have a reprieve. I really do "depression" badly. This might sound weird, but some people do it better, I think. Or it seems that way. I like to laugh, joke, tease, crack up, be silly, etc. It's very hard for me when I lose those tendencies. It's like I lose all of myself. So, when I get a break, it's easier.
I am going to the hopt. I have to go food shopping, and talk to the social worker. How does one come back in one week ready to live somewhere else for 6 months, take care of 2 homes, etc. I HATE BEING THE MAN. I GAVE UP DOING THE TAXES YEARS AGO, ONLY TO HAVE TO THROW MY HAND INTO THAT RING AGAIN??????????? Oh boy do I have my work cut out for me. No wonder I'm depressed.
I miss my dad.
Didn't mean to scare anyone. Jim's BP was okay after they did it the old fashioned way. It was still high, but not dangerously high, like the first BP indicated.
Anyway, I went to bed in better spirits. I know this is not going to be a quick fix for me. But I'm glad to have a reprieve. I really do "depression" badly. This might sound weird, but some people do it better, I think. Or it seems that way. I like to laugh, joke, tease, crack up, be silly, etc. It's very hard for me when I lose those tendencies. It's like I lose all of myself. So, when I get a break, it's easier.
I am going to the hopt. I have to go food shopping, and talk to the social worker. How does one come back in one week ready to live somewhere else for 6 months, take care of 2 homes, etc. I HATE BEING THE MAN. I GAVE UP DOING THE TAXES YEARS AGO, ONLY TO HAVE TO THROW MY HAND INTO THAT RING AGAIN??????????? Oh boy do I have my work cut out for me. No wonder I'm depressed.
I miss my dad.
Sunday, December 21, 2008
Chickens, bok bok
LOL. Well, I scared all you well wishers away for a day, did I? All except 2.....2 people who probably have a bigger mouth than me. My sister and Maddy. Kim, meet Maddy, Maddy, Kim. What a bunch of chickens....
Well, I told satan to take a tall leap off my back and go back to HE double hockey sticks. I didn't want to ruin Jim's birthday with my depression. So, I picked Jim up, and he came with me to the Lodge. They had Hanaka, or however you spell that, light ceremony and then we ate Latkes, which are potatoe pancakes, traditional Jewish food served. We layed in our beds and watched a bit of tv, and we imagined that we were at home, and it felt good.
Wow, are we getting cheap. LOL. But it doesn't take much, so that's good. I actually feel better. If I had to spend another 10 hours in this hosptial I think I would have gone nuts today.
We just got back, and Jim's blood pressure is really really high. I have to go.
Bye for now.
Well, I told satan to take a tall leap off my back and go back to HE double hockey sticks. I didn't want to ruin Jim's birthday with my depression. So, I picked Jim up, and he came with me to the Lodge. They had Hanaka, or however you spell that, light ceremony and then we ate Latkes, which are potatoe pancakes, traditional Jewish food served. We layed in our beds and watched a bit of tv, and we imagined that we were at home, and it felt good.
Wow, are we getting cheap. LOL. But it doesn't take much, so that's good. I actually feel better. If I had to spend another 10 hours in this hosptial I think I would have gone nuts today.
We just got back, and Jim's blood pressure is really really high. I have to go.
Bye for now.
Happy Birthday to Jim
Today Jim turns 47 years old.
I am going to shower and go "celebrate" my husbands birthday with him. Yeah....okay.
He's doing okay. He's getting stronger from walking, and the chemo is working on his blood a bit, but it's not taxing his body nearly as much as the cancer was, so he looks and feels better. He has always felt better on chemo than off, because the cancer is so horrible.
Well, I am have a terrific hard time with moving here. We will be back Jan 29th for 1 week, and then that might be it. I don't know how to do this. I can't do this. 1 br apts in a good neighborhood cost 1500.00 a month. Okay, no big deal. They will give us 50 bucks a day. But there is no furniture. Furnished apts. are a lot more money. And I'm not moving my furniture down here. I guess I'll throw out my greenhouse plants. Plant grass in all the gardens. Go with long meadow grass throughout the yard, as I won't be there to cut grass. Forget me and my doctors appts. Cancel the membership to the gym. Put sheets on my furniture like they do in movies when rich people toggle between their homes. What????? This is insane. I think I will die from this. Seriously, I do. I am at the end of my rope now with insanity.
One person writes one thing encouraging, quotes one scripture verse, or one platitude, I think I will rip through the screen and poke your eyes out....if you're still sitting there. If you sneak one in, I guess you're home free.
I am going to shower and go "celebrate" my husbands birthday with him. Yeah....okay.
He's doing okay. He's getting stronger from walking, and the chemo is working on his blood a bit, but it's not taxing his body nearly as much as the cancer was, so he looks and feels better. He has always felt better on chemo than off, because the cancer is so horrible.
Well, I am have a terrific hard time with moving here. We will be back Jan 29th for 1 week, and then that might be it. I don't know how to do this. I can't do this. 1 br apts in a good neighborhood cost 1500.00 a month. Okay, no big deal. They will give us 50 bucks a day. But there is no furniture. Furnished apts. are a lot more money. And I'm not moving my furniture down here. I guess I'll throw out my greenhouse plants. Plant grass in all the gardens. Go with long meadow grass throughout the yard, as I won't be there to cut grass. Forget me and my doctors appts. Cancel the membership to the gym. Put sheets on my furniture like they do in movies when rich people toggle between their homes. What????? This is insane. I think I will die from this. Seriously, I do. I am at the end of my rope now with insanity.
One person writes one thing encouraging, quotes one scripture verse, or one platitude, I think I will rip through the screen and poke your eyes out....if you're still sitting there. If you sneak one in, I guess you're home free.
Friday, December 19, 2008
You know you've been in the hosptial too long when...
- you know what they are serving on the cafetaria menu, Monday thru Friday
- you give a newer employee directions to the gym
- you recognize a nurse at the local grocery store
- You only have 4 Christmas gifts to give
- and they aren't under a tree
- and they are wrapped WITH IV TAPE...
sigh
AND YOU KNOW YOU'RE GOING TO BE IN THE HOSPITAL TOO LONG WHEN, you start planning it such so that your Easter Holiday will celebrated with a little more "Jesus" then they celebrate Christian holidays with.
So you wonder why I mention Easter? BECAUSE WE'LL BE HERE ANOTHER 5 TO 6 MONTHS. 5 TO 6 MONTHS. YEAH, YOU HEARD ME RIGHT.
Jim's SCT requires that we live here 5 to 6 months. My childlikeness, snowangel making, catching the snowflake on my tongue, wrap the gifts with IV tape for a good laugh, 20 pound heavier butt, is fading fast. we're so homesick now, it's pathetic.
I guess I won't be selling perennials or tomatoes next summer. So glad God's mercies are new every morning. I'm going to need them 2 to 3 times a day to survive that. Well, I'll look at the bright side. I always wanted to see Washington when the cherry trees bloomed. I finally will. I need my bike. I'm going to ride my bike all over the place, something I can't do in Pittsburgh.
okay, that didn't work....
Wednesday, December 17, 2008
More Cards, Packages, Good News, Love & Tears
Well, as Leah posted, Ruth is doing well and home. That was a significantly different kind of operation. I can't believe she's home. Wow. Thank you, Lord. I wasn't expecting that. And Bro Tom is doing well, too. All is well with the Baldauffs... Now, Jim's turn.
We received 2 more love packages today. Cookies and such from Joe and MJ. Thanks MJ. YUM YUM. I gave Jim the gift card so that when he gets better he can buy something he wants. I suggested sheets, since he's bloodied ours all up ;-)
Bro and Sis Kim and Mark wrapped up a big box of things we wanted from home. My fave thing as a child was making snow angels. Years ago sis saw a small Christmas Tree village item of a family with a dog just like Ruby, and a girl making snow angels. It's electrical and the girl goes back and forth making snow angels. She didn't have the $ at the time, but when she went back to buy it, they were gone. I couldn't believe she didn't get it, and that I hadn't seen it. It could not be found anywhere. We've looked. Anyway, low and behold, it was in the box. EBAY... Knowing my sister, she searched on Ebay and elsewhere for 3 years. Thanks guys. It's very touching.
Childhood things are good things. I think the Lord put childlikeness in me, even at this age. It's how I have survived a hard life: always knowing some other good possibility was out there awaiting me, something to explore, a rock to kick, a flower to pick. If it snowed here and I was walking home to the Lodge, Kim knows, and now you do, too, that I wouldn't think twice about plopping myself in the snow and making an angel, while the snowflakes fell on my face. I would open my mouth, hoping one would catch on my tongue. People would look at me like I was nuts, but I would delight in my Lord and the snow he made. It would be our moment. I did this as a child, and didn't even know it was Him I was worshipping in my childlike pleasure. But He was there with me. I know that today. I think the Lord must have allowed Kim to find the snow angel at this time, don't you think? So, while life is really hard right now, I have a reminder of who I really am, and that this life, and that this hard temporary part of this hard temporary life will pass and we will live in childlike wonder for eternity.
I got my earrings, my calcium, and our fave CD's. We immediately popped one in. It's called "A Father Sings" and it's Jim's fave. He listens to it all day and night. Well, when we heard it, we just started to cry and cry and cry. After all the good news of family, the love in boxes, the Christmas cards in the mail that was sent to our house, that my sister sent here, and hearing our music that we would lie in bed to for hours at a time, it was more than we can bear. We are soooo home sick. We want to be home soooooooo much.
And yet I fear leaving this place. I am so tired. I am so weary. so weary. The furnace was broke in my room last night, and it was 80 degrees. The engineer came at 1 am and shut the furnace off. I didn't get to sleep until about 3. When I awoke at 7, I was so cold. The man came to fix it. He left, and an hour later, it was 78 degrees, so I think I have another night like last night coming. I had to carry wet clothes from the Lodge to the Hopt. to finish drying them here because The SCT team was coming to talk to me. They never came. And it goes on and on and on. But thanks so much for the love, family and friends. Without it, it would even be more unbearable.
Love Us
We received 2 more love packages today. Cookies and such from Joe and MJ. Thanks MJ. YUM YUM. I gave Jim the gift card so that when he gets better he can buy something he wants. I suggested sheets, since he's bloodied ours all up ;-)
Bro and Sis Kim and Mark wrapped up a big box of things we wanted from home. My fave thing as a child was making snow angels. Years ago sis saw a small Christmas Tree village item of a family with a dog just like Ruby, and a girl making snow angels. It's electrical and the girl goes back and forth making snow angels. She didn't have the $ at the time, but when she went back to buy it, they were gone. I couldn't believe she didn't get it, and that I hadn't seen it. It could not be found anywhere. We've looked. Anyway, low and behold, it was in the box. EBAY... Knowing my sister, she searched on Ebay and elsewhere for 3 years. Thanks guys. It's very touching.
Childhood things are good things. I think the Lord put childlikeness in me, even at this age. It's how I have survived a hard life: always knowing some other good possibility was out there awaiting me, something to explore, a rock to kick, a flower to pick. If it snowed here and I was walking home to the Lodge, Kim knows, and now you do, too, that I wouldn't think twice about plopping myself in the snow and making an angel, while the snowflakes fell on my face. I would open my mouth, hoping one would catch on my tongue. People would look at me like I was nuts, but I would delight in my Lord and the snow he made. It would be our moment. I did this as a child, and didn't even know it was Him I was worshipping in my childlike pleasure. But He was there with me. I know that today. I think the Lord must have allowed Kim to find the snow angel at this time, don't you think? So, while life is really hard right now, I have a reminder of who I really am, and that this life, and that this hard temporary part of this hard temporary life will pass and we will live in childlike wonder for eternity.
I got my earrings, my calcium, and our fave CD's. We immediately popped one in. It's called "A Father Sings" and it's Jim's fave. He listens to it all day and night. Well, when we heard it, we just started to cry and cry and cry. After all the good news of family, the love in boxes, the Christmas cards in the mail that was sent to our house, that my sister sent here, and hearing our music that we would lie in bed to for hours at a time, it was more than we can bear. We are soooo home sick. We want to be home soooooooo much.
And yet I fear leaving this place. I am so tired. I am so weary. so weary. The furnace was broke in my room last night, and it was 80 degrees. The engineer came at 1 am and shut the furnace off. I didn't get to sleep until about 3. When I awoke at 7, I was so cold. The man came to fix it. He left, and an hour later, it was 78 degrees, so I think I have another night like last night coming. I had to carry wet clothes from the Lodge to the Hopt. to finish drying them here because The SCT team was coming to talk to me. They never came. And it goes on and on and on. But thanks so much for the love, family and friends. Without it, it would even be more unbearable.
Love Us
Thanks Judy...Karen, too
Hi Judy:
Thanks for letting us know about Tom. That's great news. We were wondering. I'm surprised that he's done and back already. Now we're wondering about Ruthie. Please post if and when you know something.
No news on Jim's CT scan yet. They are giving him chemo today. They did say, significant improvement was seen, but not official report was dictated yet. Ya know, it doesn't really matter though. How many times have we heard, "Oh, great news. The CT scan shows the cancer is gone." Yeah, right.
Karen, thanks for the Christmas gifts. When I saw the zappos box, I thought "Oh No, not again. LOL, because I never did return the boots, but let Leah return them for some shoes. So, the boots didn't go to waste, but, ya know....Anyways, many thanks. You didn't have to wrap up my game, silly girlfriend. We had fun unwrapping the gifts, and your card made us cry. Merry Christmas, girlfriend, and I'm sorry I can't reciprocate and do our traditional lunch and such. Call me sometime.
Anyway, I'll still post when I know something about anything....
US
Thanks for letting us know about Tom. That's great news. We were wondering. I'm surprised that he's done and back already. Now we're wondering about Ruthie. Please post if and when you know something.
No news on Jim's CT scan yet. They are giving him chemo today. They did say, significant improvement was seen, but not official report was dictated yet. Ya know, it doesn't really matter though. How many times have we heard, "Oh, great news. The CT scan shows the cancer is gone." Yeah, right.
Karen, thanks for the Christmas gifts. When I saw the zappos box, I thought "Oh No, not again. LOL, because I never did return the boots, but let Leah return them for some shoes. So, the boots didn't go to waste, but, ya know....Anyways, many thanks. You didn't have to wrap up my game, silly girlfriend. We had fun unwrapping the gifts, and your card made us cry. Merry Christmas, girlfriend, and I'm sorry I can't reciprocate and do our traditional lunch and such. Call me sometime.
Anyway, I'll still post when I know something about anything....
US
Tuesday, December 16, 2008
All kinds of things
Hi Everyone:
First, allow me to say thank you for the cards. I will post our address here, since many people are asking it, and then this way if Jim's room is moved, I can change it there, as well. Anyway, we liked the cards. It really cheers us up and is fun. Today, I got Kim's and Bob and Janice & family. Thank you, guys. And John and Leah's, with Oreo's in John's teeth. Thank John. I'm even getting a few cards from my sister's online friends who have beat breast cancer. Yesterday we got Bill and Jeannies card and Bob and Ruth's, and Ruth had sent too ornaments that we put on the tree. She didn't even know a tree was coming. And I put Junie's nativity set under our tree and hung our cards. It's beginning to look a lot like Christmas here. Anyway, thank you all for your cards and gifts. We are so blessed.
Okay important stuff.
First, allow me to say thank you for the cards. I will post our address here, since many people are asking it, and then this way if Jim's room is moved, I can change it there, as well. Anyway, we liked the cards. It really cheers us up and is fun. Today, I got Kim's and Bob and Janice & family. Thank you, guys. And John and Leah's, with Oreo's in John's teeth. Thank John. I'm even getting a few cards from my sister's online friends who have beat breast cancer. Yesterday we got Bill and Jeannies card and Bob and Ruth's, and Ruth had sent too ornaments that we put on the tree. She didn't even know a tree was coming. And I put Junie's nativity set under our tree and hung our cards. It's beginning to look a lot like Christmas here. Anyway, thank you all for your cards and gifts. We are so blessed.
Okay important stuff.
- Prayer needed, not only for Jim, but for the people that have been praying for Jim.
- Jim's brother Tom is going in for mouth surgery. Last time he had this procedure done, it failed, and he got a severe infection, and lots of problems. So pray for him and his procedure. We all love and need Tom healthy. I think his surgery is tomorrow.
- Pray for Ruth, Jim's sister. She is also going in tomorrow for brain surgery, with the gamma knife. The last time she had surgery for the same problem, we almost lost her. It was severe. There is only 1 doctor around town who had ever had the problem that came up with Ruth, and he just happened to be in the operating room next to her. Had he not been, she would have died. She almost love every ounce of blood. We're still amazed she is here. The gamma knife is much safer than the last way they did the surgery, but still....I'm not even telling Jim they are doing the procedure. I just found out myself, so please lift up Ruth in prayer with us. We need her, too. And Ruthie, here you are sending us ornaments, and you are filled with your own issues. My goodness, sweet girl. I love you. God Bless you and be with you. I will pray double for you. Maybe I better tell Jim after all. He's a very good prayer. Okay, I'll tell him. And to think that you were disappointed that you couldn't get tested to be a donor for Jim. ;) We love you.
- I am home............awwwwwwwww...not in Pittsburgh, but back at the lodge. I hated being at the Hilton. How can men stand business trips. It is so cold and lonely at hotels, with their bars and weird television stations, all promising comfort and delivering more loneliness, with the added touch of shame and guilt. Yucky food at high prices, and commercialism. I'm glad I'm back at the lodge. I still see no Nativity Scene yet, next to the Menorah or Kwanzaa display. I'll get on it, Bill.
SISTER...Thanks for Jim's birthday card...and your funny little confetti. Now, if I get sepsis, C-dif, MRSA or imbetego from picking up little pieces of confetti off the floor, I'm going to come up there and kick your humming butt. Thanks for that. :-/
Leah, dear. Bring some sheet music when you come, or practice a few Christmas songs. There are 2 grand pianos here. 1 at the lodge. You can play for us, huh?
I'll let you know about Jim's CT scan as soon as we find out.
God bless.
US
Monday, December 15, 2008
roflmbo
Oh my gosh. Sister, I am dying here. Jim just rolled his eyes, as I mentioned you humming Deck the halls. He then proceeded to hum, like you do, with the weird mouth thing, and hum deck the halls and we were rolling on the floor, laughing our butts off.
when this is all over and Jim is healthy, we are having a blog party. All family and friends, and all who have read the blog are invited. We will have an open mic, so people can say things, etc. Great food and fun.
And my sister will hum a tune for you all, and you will all know what we are talking about. And the whole room will be rofltbo.
So pray hard for Jim, cause you won't want to miss that hum.
On the serious side. We jut go the study number of the trial. It's 04-C-0055. If you want to read about it, here it is.
http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_04-C-0055.html@04-C-0055
We just read the consent and would be scared to death to do it if we thought that anything else but death was awaiting Jim anyway. So, we'll do it. But it sure is scary. Jim will be and get possibly very sick from this. Anyway...we're going to finish our movie.
Us
when this is all over and Jim is healthy, we are having a blog party. All family and friends, and all who have read the blog are invited. We will have an open mic, so people can say things, etc. Great food and fun.
And my sister will hum a tune for you all, and you will all know what we are talking about. And the whole room will be rofltbo.
So pray hard for Jim, cause you won't want to miss that hum.
On the serious side. We jut go the study number of the trial. It's 04-C-0055. If you want to read about it, here it is.
http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_04-C-0055.html@04-C-0055
We just read the consent and would be scared to death to do it if we thought that anything else but death was awaiting Jim anyway. So, we'll do it. But it sure is scary. Jim will be and get possibly very sick from this. Anyway...we're going to finish our movie.
Us
And the lucky donor may be.....
Bob, Bill, and June....
So far. They're not done with Janet's yet. They are testing more to get even closer matches, but that's where we are so far. The doctors say the best donor is always the one that lives the farthest away. :)
Anyways, more info to come.
The tree came from Target. Is that you, my home group? Don't you love it.... Me and Jim belong to a home group, cell group. We don't even know what it's called. We've belonged for a year...and never made it to one meeting. LOL. And they send a tree. Now that is one heck of a group, don't you think?
So, Mark took a tree from the attic, sister and put it in the mail? Geeze. He's a nut. That one will go in my lodge room. :)
Thanks guys.
So far. They're not done with Janet's yet. They are testing more to get even closer matches, but that's where we are so far. The doctors say the best donor is always the one that lives the farthest away. :)
Anyways, more info to come.
The tree came from Target. Is that you, my home group? Don't you love it.... Me and Jim belong to a home group, cell group. We don't even know what it's called. We've belonged for a year...and never made it to one meeting. LOL. And they send a tree. Now that is one heck of a group, don't you think?
So, Mark took a tree from the attic, sister and put it in the mail? Geeze. He's a nut. That one will go in my lodge room. :)
Thanks guys.
SCT
The stem cell transplant team left a message. They are still doing some tests on some of the siblings blood, but she said they already have a few matches (which is great news) so they are waiting for these tests to come back because they will dig deeper to get the best, perfect match. So, that's good news and made Jim cry. It made him realize how much he wants to live. Oh, how I want him to live, too.
Fess up time. . Who sent the lit Christmas tree from Target? It's so pretty and makes it so nice in our room. I wish I had brought my camera, I would have taken a picture and posted it. Thanks so much, secret santa, but let us know if you would like so we can say ho ho ho and thank yo yo yo...wow, that was lame.
Fess up time. . Who sent the lit Christmas tree from Target? It's so pretty and makes it so nice in our room. I wish I had brought my camera, I would have taken a picture and posted it. Thanks so much, secret santa, but let us know if you would like so we can say ho ho ho and thank yo yo yo...wow, that was lame.
Sunday, December 14, 2008
reality
I just realized that I'm still not over the fact that the UCN-O1 didn't work, and that we are trying regular chemo and STC that don't offer the great results and minimal side effects that UCN offered. As I said prior, I really thought the Lord was working this all out and Jim would be miraculously healed by this trial like many of the others with this disease have been. And when I think that didn't work for Jim, it almost breaks my heart...again.
I was fine today, until he told me that he was losing his hair again, and I saw it all over the pillow. It was a reminder of how mean chemo is. Which made me think of how slim Jim's chances are that medically he will come out of this. Which is another reminder of the fact that my dear dear precious husband will get just as sick as he was and....get the point?
He now weighs 208. He keeps losing weight. It also scares us that they haven't gotten back to us about whether any of the siblings are a match for the SCT. It's been enough time. Have they started looking in the national databank and have not told us? It's possible. They treat you like mushrooms here. Keep you in the dark and feed you horse manure.
Anyway, I just posted cause I don't have my journel here and don't have anyone to talk to and well...there it is.
Well, the nurse came in with Jim's dinner...delivered through the IV. Yum Yum.
I was fine today, until he told me that he was losing his hair again, and I saw it all over the pillow. It was a reminder of how mean chemo is. Which made me think of how slim Jim's chances are that medically he will come out of this. Which is another reminder of the fact that my dear dear precious husband will get just as sick as he was and....get the point?
He now weighs 208. He keeps losing weight. It also scares us that they haven't gotten back to us about whether any of the siblings are a match for the SCT. It's been enough time. Have they started looking in the national databank and have not told us? It's possible. They treat you like mushrooms here. Keep you in the dark and feed you horse manure.
Anyway, I just posted cause I don't have my journel here and don't have anyone to talk to and well...there it is.
Well, the nurse came in with Jim's dinner...delivered through the IV. Yum Yum.
sunday
Good morning all.
I went to church today. It was good. I promise to let my NPC church members, those who were interested, how this church is similar, different and compares to ours.
Jim had a bad night. Lots of pain. His eyes are sore, and he's tired. Not sure what that is all about. Is the cancer growing again? I don't know. The doctor that came in today said that Jim will not be having 6 sessions of EPOCH, like we had been previously told. They just want to get it managed so they can do the stem cell transplant. I was told by the doc, that the EPOCH could take care of the cancer itself. They must have changed their mind. Anyway, I'm glad Jim's had some bounceback healthwise, which makes us say "yes" to a SCT. A week ago, we both would have said no. Still scary though. We don't even know if anyone is a match yet. I guess we'll find out soon. So, I'm also wondering if we'll ever go home before the STC takes place. Whewwwwwwwwww...Never a dull moment.
Rach, amen to what you posted.
MJ, amen to what you posted.
Amy, awwwwwww, you and Lanely sewing for me? That's sweet. Hope you and your family are doing well. Hannah still praying for Mr. Jim? Brian, you still writing poetry? ;)
Mike and Ali, I thought I had wrote a thankyou e-mail, but found that it was returned to me. I guess I remembered your e-mail address wrong. Anyway, I just wanted to say thank you so much for blessing me and your Uncle Jim. I tried to tell you mom, "no" but she said you guys really want to do that. So thanks. We love you guys and are blessed by your generosity. Thanks, too, for helping John with his car. They had a nice time visiting with you guys.
Oh my. We're doing okay down here. I sure am lonely. Very lonely. Last night, the 6 goosedown pillow place had a party in the Atrium. "Celebrate good times, come on" and such, boomed into my door so loud until about 11:15 at night. I couldn't even hear the television. But that's okay, it was just Willy Wonka for the 3rd time since I've been here.
So thanks MJ, Rach, and Amy, for letting me know what you guys were doing. It helps me feel connected. I appreciate that.
And MJ, I hope you're mouth is doing better. If I were at home, I would have joined you for a Christmas movie. There are never any good ones, anymore though.
Love Us
I went to church today. It was good. I promise to let my NPC church members, those who were interested, how this church is similar, different and compares to ours.
Jim had a bad night. Lots of pain. His eyes are sore, and he's tired. Not sure what that is all about. Is the cancer growing again? I don't know. The doctor that came in today said that Jim will not be having 6 sessions of EPOCH, like we had been previously told. They just want to get it managed so they can do the stem cell transplant. I was told by the doc, that the EPOCH could take care of the cancer itself. They must have changed their mind. Anyway, I'm glad Jim's had some bounceback healthwise, which makes us say "yes" to a SCT. A week ago, we both would have said no. Still scary though. We don't even know if anyone is a match yet. I guess we'll find out soon. So, I'm also wondering if we'll ever go home before the STC takes place. Whewwwwwwwwww...Never a dull moment.
Rach, amen to what you posted.
MJ, amen to what you posted.
Amy, awwwwwww, you and Lanely sewing for me? That's sweet. Hope you and your family are doing well. Hannah still praying for Mr. Jim? Brian, you still writing poetry? ;)
Mike and Ali, I thought I had wrote a thankyou e-mail, but found that it was returned to me. I guess I remembered your e-mail address wrong. Anyway, I just wanted to say thank you so much for blessing me and your Uncle Jim. I tried to tell you mom, "no" but she said you guys really want to do that. So thanks. We love you guys and are blessed by your generosity. Thanks, too, for helping John with his car. They had a nice time visiting with you guys.
Oh my. We're doing okay down here. I sure am lonely. Very lonely. Last night, the 6 goosedown pillow place had a party in the Atrium. "Celebrate good times, come on" and such, boomed into my door so loud until about 11:15 at night. I couldn't even hear the television. But that's okay, it was just Willy Wonka for the 3rd time since I've been here.
So thanks MJ, Rach, and Amy, for letting me know what you guys were doing. It helps me feel connected. I appreciate that.
And MJ, I hope you're mouth is doing better. If I were at home, I would have joined you for a Christmas movie. There are never any good ones, anymore though.
Love Us
Saturday, December 13, 2008
Ho Ho Ho? No No No. Boo Hoo Hoo
Jim continues to feel better painwise. He could use some red blood cells, however. His blood count is low. They let it go lower here, than anywhere else, because there is such a high use of blood, and a low supply. But he's okay.
He's down today. I'm not sure why. Well, I know part of the reason. A long time ago, I told him that I wanted a Ukelele. I'm so tired of trying to play the guitar and stinking at it. Ukes only have 4 strings, so I'm thinking I would be better. Anyway, he was looking at Uke playing on utube, and it made him think of how he probably won't be able to play the piano or guitar anymore. His neuropathy is soooooooooooo bad. The worse ever. I massaged his feet and hands, just to desensitize them. And he also thought about the many things he built with his hands and "how God gave him good hands." So, that certainly was a lot of it. But I think there is a bit of something else, too.
Perhaps he feels as I do... I'm glad he's not in pain and doing better, but I'm keeping my hope in the Lord, and not in what any day looks like, bad or good. I mean, it's certainly wonderful to not see him in pain and looking good. And Jim is loving it, too. But we have been there before. I'm not sure what is making Jim so sad. I'm not probing, cause it causes him to cry to talk of personal things today. Kind of odd for me...such a feeling person, one who "loves honest dialogue" so much. :) I just want to let him be and feel whatever it is he needs without me analyzing it. He's been through so much.
The nurse said that Jim will be getting a CT Scan on the 16th, and then the chemo will start again on the 17th or 18th. So, that's what next week brings. He continues to lose weight. He now weighs 211 pounds. Skinniest I've ever seen him.
The 6 goosedown pillow thrill is gone. Great place to stay, but going home alone to an empty "home" no matter how nice, is still going home alone. I wish I was a good sleeper. I'm just not. Even in my home, in my bed, with my DH right besides me, I'm still not a great sleeper. I would stay here with him, but I just can't sleep. On the goosebed last night, I stayed up doing logic problems (bought a whole mag full, Tom) until 3 a.m.
Something I wanted to mention about yesterday's 4 hour shopping trip. As I said in a prior post, we can definately feel the spiritual difference, oppression, of this area. But no matter where I go, and I've gone many places. I drove through Bethesda, with 200 restaurants, Rockville with 2000 shops, etc. And I found 1 red kettle outside Sam's Club. 1. One. Uno.
My sister knows what that means to me. During our traditional Christmas shopping days at home, when we would go shopping 2, 3 times a week, many times not even buying anything, but always having lunch, ;-) there were kettles everywhere. By the end of December, I was broke...not from shopping, but from the red kettles. I love Salvation Army. I saw one down here. 1 lonely solemn bell tingling in the cold air. Sad.
Now I know that Pittsburgh isn't the bible belt...lol, and I know a christian city, a red kettle does not make, but it sure is different. Great place to visit, but I wouldn't want to live here.
That just makes me want to kick the Ravens butt tomorrow. Go Steelers.
He's down today. I'm not sure why. Well, I know part of the reason. A long time ago, I told him that I wanted a Ukelele. I'm so tired of trying to play the guitar and stinking at it. Ukes only have 4 strings, so I'm thinking I would be better. Anyway, he was looking at Uke playing on utube, and it made him think of how he probably won't be able to play the piano or guitar anymore. His neuropathy is soooooooooooo bad. The worse ever. I massaged his feet and hands, just to desensitize them. And he also thought about the many things he built with his hands and "how God gave him good hands." So, that certainly was a lot of it. But I think there is a bit of something else, too.
Perhaps he feels as I do... I'm glad he's not in pain and doing better, but I'm keeping my hope in the Lord, and not in what any day looks like, bad or good. I mean, it's certainly wonderful to not see him in pain and looking good. And Jim is loving it, too. But we have been there before. I'm not sure what is making Jim so sad. I'm not probing, cause it causes him to cry to talk of personal things today. Kind of odd for me...such a feeling person, one who "loves honest dialogue" so much. :) I just want to let him be and feel whatever it is he needs without me analyzing it. He's been through so much.
The nurse said that Jim will be getting a CT Scan on the 16th, and then the chemo will start again on the 17th or 18th. So, that's what next week brings. He continues to lose weight. He now weighs 211 pounds. Skinniest I've ever seen him.
The 6 goosedown pillow thrill is gone. Great place to stay, but going home alone to an empty "home" no matter how nice, is still going home alone. I wish I was a good sleeper. I'm just not. Even in my home, in my bed, with my DH right besides me, I'm still not a great sleeper. I would stay here with him, but I just can't sleep. On the goosebed last night, I stayed up doing logic problems (bought a whole mag full, Tom) until 3 a.m.
Something I wanted to mention about yesterday's 4 hour shopping trip. As I said in a prior post, we can definately feel the spiritual difference, oppression, of this area. But no matter where I go, and I've gone many places. I drove through Bethesda, with 200 restaurants, Rockville with 2000 shops, etc. And I found 1 red kettle outside Sam's Club. 1. One. Uno.
My sister knows what that means to me. During our traditional Christmas shopping days at home, when we would go shopping 2, 3 times a week, many times not even buying anything, but always having lunch, ;-) there were kettles everywhere. By the end of December, I was broke...not from shopping, but from the red kettles. I love Salvation Army. I saw one down here. 1 lonely solemn bell tingling in the cold air. Sad.
Now I know that Pittsburgh isn't the bible belt...lol, and I know a christian city, a red kettle does not make, but it sure is different. Great place to visit, but I wouldn't want to live here.
That just makes me want to kick the Ravens butt tomorrow. Go Steelers.
Friday, December 12, 2008
Lots of stuff
Hi Everyone:
Jim is doing well. The methadone seems to be working fine, now. Thanks for the input, Mary. We also hope the chemo has helped it shrink, too. We didn't know you were reading, and both Jim and I feel blessed to have your prayers and your input. It's so nice to have Jim back.
Jim is really really REALLY doing well. He hasn't felt cancer pain today. He's feeling like the tumors are gone. We shall see. He's smiling a lot, something that he hasn't done in soooooooo long. He's talking about Disney, and wants to live, and hopes this works. If he had his muscles and some strength, I would say the old Jim is back. Weird. But good.
Now, this might be TMI for some of you, but Jim had a normal BM today. I'll leave it at that. That could signify that the tumors are shrunk.
Well, I have to tell you. I pricelined well. I am staying at the most fanciest place I have ever stayed in my whole life. I have a king size bed that is soooooo comfortable. I have 6 goose down pillows on my bed. I have a sitting area outside my door that overlooks the indoor atrium. It's where I had my quiet time today. I was embarrassed when I walked in. All these execs, and then there's me with my gym bag and 10 white grocery bags...lol. Well, hey, I only expected to be here 4 or 5 days. Anyway, it's lovely. but....BUT NEVER EVER GO TO A PLACE LIKE THIS AND FLIP THROUGH THE CHANNELS ON THE REMOTE CONTROL. HBO HAS PORNO. I couldn't believe it.
Well, I went to the stores today. 4 hours of shopping and I got 1 pair of slippers for Jim. We are going to watch a few movies. It's date night.
John and Leah are coming here for Christmas. I think we're going to have a nice Christmas after all.
SISTER, I NEED YOU TO SEND ME SOME LIGHTS. I'll e-mail you.
Anyway, Jim is doing very very well.
We are both smiling tonight.
Love Us
Jim is doing well. The methadone seems to be working fine, now. Thanks for the input, Mary. We also hope the chemo has helped it shrink, too. We didn't know you were reading, and both Jim and I feel blessed to have your prayers and your input. It's so nice to have Jim back.
Jim is really really REALLY doing well. He hasn't felt cancer pain today. He's feeling like the tumors are gone. We shall see. He's smiling a lot, something that he hasn't done in soooooooo long. He's talking about Disney, and wants to live, and hopes this works. If he had his muscles and some strength, I would say the old Jim is back. Weird. But good.
Now, this might be TMI for some of you, but Jim had a normal BM today. I'll leave it at that. That could signify that the tumors are shrunk.
Well, I have to tell you. I pricelined well. I am staying at the most fanciest place I have ever stayed in my whole life. I have a king size bed that is soooooo comfortable. I have 6 goose down pillows on my bed. I have a sitting area outside my door that overlooks the indoor atrium. It's where I had my quiet time today. I was embarrassed when I walked in. All these execs, and then there's me with my gym bag and 10 white grocery bags...lol. Well, hey, I only expected to be here 4 or 5 days. Anyway, it's lovely. but....BUT NEVER EVER GO TO A PLACE LIKE THIS AND FLIP THROUGH THE CHANNELS ON THE REMOTE CONTROL. HBO HAS PORNO. I couldn't believe it.
Well, I went to the stores today. 4 hours of shopping and I got 1 pair of slippers for Jim. We are going to watch a few movies. It's date night.
John and Leah are coming here for Christmas. I think we're going to have a nice Christmas after all.
SISTER, I NEED YOU TO SEND ME SOME LIGHTS. I'll e-mail you.
Anyway, Jim is doing very very well.
We are both smiling tonight.
Love Us
Thursday, December 11, 2008
Better and better & thanks yous
Jim continues to get better. He walked a bunch more yesterday. His mouth is still sore, but he ate some oatmeal I made him. He ate a yogurt, too.
The lump on his leg, that looks to me like an ingrown hair follicle, is going to be biopsied today. The docs just want to know what it is. I know that chemo can cause new cancers, and that may be their concern, but really it does look follicular in nature to me. (trying to sound doctorish)
The bed sore is still there. It's not getting better, but it's not getting worse. Jim was able to sleep on his side last night, something he has not been able to do for months.
He is still neutropenic. And today he needs to get more platelets.
I had told Jim that I thought they changed him from oxycontin to methadone because they thought he was addicted, and based on our 1 min discussin with the doctor today, because he is responding to this chemo, this is what the doctor said.
"It's obvious that the pain is no longer from the cancer, and because you have been on pain medicine for so long, your body is obviously addicted to it by now,(no kidding) and that's why we changed the medicine to methadone. (another point for me...big deal) AGAIN, I told them of this starting with great pain, and the first CT scan showed the lymph node was 1.5 cm. And Jim's only gotten off pain medicine when the tumor had shrunk all the way down. So....I think we are going to have a pain medicine battle going on, because they just can't "hear" us. I just hope they don't want a CT scan.
Junie: Thanks for Jesus in a package. :)
Bill: I did say something to the Lodge about no nativity scene. I even volunteered to buy them one. I have not heard from them.
Kelly: Jim LOVES the pj's. He says they are the best pj's he's ever had, and he has them on now. I was looking at Katlyn's pics, as he was opening up the box. She is so beautiful. My goodness. Stunning, really.
Sister: Thanks for letting me vent and taking the time to listen to a crazy woman. And the Chicago Tribune crossword puzzle. It's on his lap with 3 answers. ;)
Thanks for the cards and such, folks. I think he liked getting the mail.
The lump on his leg, that looks to me like an ingrown hair follicle, is going to be biopsied today. The docs just want to know what it is. I know that chemo can cause new cancers, and that may be their concern, but really it does look follicular in nature to me. (trying to sound doctorish)
The bed sore is still there. It's not getting better, but it's not getting worse. Jim was able to sleep on his side last night, something he has not been able to do for months.
He is still neutropenic. And today he needs to get more platelets.
I had told Jim that I thought they changed him from oxycontin to methadone because they thought he was addicted, and based on our 1 min discussin with the doctor today, because he is responding to this chemo, this is what the doctor said.
"It's obvious that the pain is no longer from the cancer, and because you have been on pain medicine for so long, your body is obviously addicted to it by now,(no kidding) and that's why we changed the medicine to methadone. (another point for me...big deal) AGAIN, I told them of this starting with great pain, and the first CT scan showed the lymph node was 1.5 cm. And Jim's only gotten off pain medicine when the tumor had shrunk all the way down. So....I think we are going to have a pain medicine battle going on, because they just can't "hear" us. I just hope they don't want a CT scan.
Junie: Thanks for Jesus in a package. :)
Bill: I did say something to the Lodge about no nativity scene. I even volunteered to buy them one. I have not heard from them.
Kelly: Jim LOVES the pj's. He says they are the best pj's he's ever had, and he has them on now. I was looking at Katlyn's pics, as he was opening up the box. She is so beautiful. My goodness. Stunning, really.
Sister: Thanks for letting me vent and taking the time to listen to a crazy woman. And the Chicago Tribune crossword puzzle. It's on his lap with 3 answers. ;)
Thanks for the cards and such, folks. I think he liked getting the mail.
long day and night
it's 1:30 a.m, and I'm not even close to sleeping. But Jim is, so shhhh.
I would say this was one of the top 10 worse days of my life. I won't be getting any sleep here. So, I just pricelined a hotel, for the next 5 days. I got a good deal. I'm amazed. It's at a Hilton 4 miles down the same road. It's a 4 star exec. center, so that' where I'll be until check in time at the lodge.
The lodge is a blessing. but it is totally rediculous that after 27 days, you have to leave for 5 days and re-check in. Did it dawn on anybody when they made up this rule, that if someone is here for 27 days, the last thing they need in their long drawn out exhaustive trial is to pack up everything and leave. I don't mean to sound ungreatful, but it's kind of backwards thinking. This is when they ought to throw in a free massage, not throw you out.
I think I might be getting sick.
I would say this was one of the top 10 worse days of my life. I won't be getting any sleep here. So, I just pricelined a hotel, for the next 5 days. I got a good deal. I'm amazed. It's at a Hilton 4 miles down the same road. It's a 4 star exec. center, so that' where I'll be until check in time at the lodge.
The lodge is a blessing. but it is totally rediculous that after 27 days, you have to leave for 5 days and re-check in. Did it dawn on anybody when they made up this rule, that if someone is here for 27 days, the last thing they need in their long drawn out exhaustive trial is to pack up everything and leave. I don't mean to sound ungreatful, but it's kind of backwards thinking. This is when they ought to throw in a free massage, not throw you out.
I think I might be getting sick.
Wednesday, December 10, 2008
IIIIII Won't be home for Christmas...
Hi Everyone:
Well, I took a day off from updates, so here is a quick review of yesterday.
Well, I took a day off from updates, so here is a quick review of yesterday.
- Jim's throat is a tiny bit better
- He's still neutropenic
- His mouth is feeling a tiny bit better
- His blood count is low, but okay
- His platelet count is low, but okay
- He's lost all the extra water, plus 7 pounds
- They are feeding him through IV
- He walked much stronger yesterday
- He's got a lump on his leg, that we don't what it is
- He's got the beginning of a terrible bed sore, if he doesn't quit laying the way he is.
All 16 hospital stays, he has insisted he can't lay flat or use a wedge. He comes home....and sleeps flat. So, while looking at the lump on his leg, I notice a 4" X 6" bedsore. 1" by 4" is close to breaking through. I told him he has to lay flat, but he still insists he can't. I googled bed sores, and hit the "image" tab and walla, he sees pics of bed sores, and he's laying flat with a wedge.
Well, I blogged for 20 minutes and lost it all, so I'm going fast now, cause I"m running out of time. I have to be out of the ledge in 1.20 hours. Bob and Shelly's little one has the flu, so I can't go there, so I have decided to stay with Jim. I appreciate all the offers from Jesse and Leahs' friend, and even checking with a local church, but I just don't have what it takes to sleep with people I don't know. I'm tired and worn out, and I want my own bathroom and bed and I want to read when I want to read and I haven't been going to the bathroom well, etc. So, thanks. I also don't have what it takes to make nice and chit chat and show appreciation. I 'm tired. I look like hell and feel like hell and am in no mood to make nice for a place to sleep. Worse comes to worse, I have a bed in the van, and I'm serious. So, thank you very much. I have been packing up stuff last night and this morn. Leaving the lodge is a pain in the butt, for sure. Food and all. Oh well. It's been nice for 27 days. And I'll be back in 6 days.
Worse than anything is I won't be home for Christmas. This makes the second yucky Christmas in a row. I hear no carols. No volunteering, no pretty decorations. For the second year in my life, I won't unwrap decorations out of their boxes for my tree, something I have done for 30 years. No train. No cookies. No christmas caroling with my church. No bell choir. No Light of Life, or Angel tree. None of my fave CD's or DVD's of Christmas. No good cheeseballs, no shopping, no Hartwood Acres for the Festival of Lights. No decorating with my own lights. NO GIFTS...YIKES...Now I'm really depressed. ;)
Ya know it sounds bleak, but I'm okay. I don't know how to tell of hard times without sounding...like it's hard. And it is, but I"m okay. Me and my buddy Jesus just keep on keeping on. Suffering has become beautiful in a weird sort of way. And things are bad. But they could be worse. And, who knows, this could be in preparation for even more bad, bad economy, losing our house, health insurance, my own health, etc. Who knows. It's okay cause it's temporary and I have the Lord with me no matter what. One thing though, Lord. I sure hope if more bad times come it doesn't involved years of hospital sitting taking care of someone sick. NO, NOT THAT...please not that.
Family, friends. Take care of yourselves. I may be seasoned, but I'm not on the volunteer list for this type of duty for another 10 years....unless you really needed me. But I hope it's in Pittsburgh and I can go into my own bed at night, and I can sit in my livingroom at Christmas, thanking Jesus for this life...and that this life doesn't last forever. AMEN.
This Christmas, we will talk of fun family times. We'll think of the box of love from our church, and Tom and Judy's visit and Shelly's food drop off. Free nights of rest at the Lodge, and Jim still being with us. There are many blessings still.
Last blog that got deleted was better, but, oh well....
Ho ho ho
Monday, December 8, 2008
What a difference a day makes
Hi Peoples:
Well, Judy, if he did take a step for everyone in the family, he would be home...your home. And I would stay here in hiding. :)
Jim's doing a bit better today. He's receiving 2 units of blood. 5 units of platelets. His mouth pain is still bothering him. So far he has consumed 100 calories. He's had some bathroom mishaps, so that's had him out of the bed quite a few times. He's also had a bath. And he's awake, which is pretty amazing in itself.
And he's fussing. Really fussing. Complaining to the nurse and everying. Why? Because the DVD in his room won't work, and he can't watch The Lord of the Rings. It's been 8 days since he's attempted to watch it, which tells me he is feeling better. I'm going down, and he's going to walk and then finish the darn yogurt. Then he's going to have to drink one of his 600 calorie drinks. I got my work cut out for me.
His culture is back. It was NOT Herpes of the mouth, but Mucositis. I win. I should have been a doctor. NO THANKS. We're now waiting for the C-dif culture. Yep, sister. good ole' C dif. And who knows what else.
He's got a long way to go, but he's a bit ornary, attempting to make a few jokes (we know how aweful that is) and he's feeding himself a yogurt. It's taking 3 hours, but he's doing it.
I'll write later to report how he did on his walk. First he has to get another unit of blood. I think the blood has really helped him, too. When you're low on the blood, that's hard. And they really let the blood get low here, under 8. There's such a shortage here. Imagine the blood they go through here. It's crazy. Makes me want to donate, but I'm so beat, I'm afraid I'll get down and sick. My saliva gland may be starting to get infected again. Pray I don't get sick.
Talk to you later.
PS. I'm going to use the "take a bite for Junie, Judy, Jesus" trick now.
Well, Judy, if he did take a step for everyone in the family, he would be home...your home. And I would stay here in hiding. :)
Jim's doing a bit better today. He's receiving 2 units of blood. 5 units of platelets. His mouth pain is still bothering him. So far he has consumed 100 calories. He's had some bathroom mishaps, so that's had him out of the bed quite a few times. He's also had a bath. And he's awake, which is pretty amazing in itself.
And he's fussing. Really fussing. Complaining to the nurse and everying. Why? Because the DVD in his room won't work, and he can't watch The Lord of the Rings. It's been 8 days since he's attempted to watch it, which tells me he is feeling better. I'm going down, and he's going to walk and then finish the darn yogurt. Then he's going to have to drink one of his 600 calorie drinks. I got my work cut out for me.
His culture is back. It was NOT Herpes of the mouth, but Mucositis. I win. I should have been a doctor. NO THANKS. We're now waiting for the C-dif culture. Yep, sister. good ole' C dif. And who knows what else.
He's got a long way to go, but he's a bit ornary, attempting to make a few jokes (we know how aweful that is) and he's feeding himself a yogurt. It's taking 3 hours, but he's doing it.
I'll write later to report how he did on his walk. First he has to get another unit of blood. I think the blood has really helped him, too. When you're low on the blood, that's hard. And they really let the blood get low here, under 8. There's such a shortage here. Imagine the blood they go through here. It's crazy. Makes me want to donate, but I'm so beat, I'm afraid I'll get down and sick. My saliva gland may be starting to get infected again. Pray I don't get sick.
Talk to you later.
PS. I'm going to use the "take a bite for Junie, Judy, Jesus" trick now.
Sunday, December 7, 2008
me again
First, Judi, Junie, Kim and Chrissie, I responded to your posts in the last blog.
Well, Tom called Jim, and that got him a bit motivated. So he ate about 400 calories and took a walk. He's still spiking a temp, but when I left him, he was resting well. The walk wore him out. He walked about 200 feet probably, give or take a few.
On the way back to the Lodge, I called Tom and we chatted a moment, and I was struggling because I told Tom that I didn't know what was happening to me, that I wasn't able to feel compassion for Jim, that about the only thing that I could possibly conjure up was a little bit of anger...not even too much of that either.
I am so black or white, all or nothing. That feeling was just for today, and I end up thinking that it categorizes me as a whole. Well, it doesn't. In bed an hour ago, I let some tears loose, and as I thought of things, more tears feel, and I realized that if I allow myself to feel the pain or suffering that Jim has gone through, that I feel like I'm going to die. So, I must shut it off to continue to survive this, to continue to walk this, to continue to serve Jim in this. It KILLS ME when I even think of what my Jumbo looked like as his ravaged body struggled to walk 200 feet. My herculean husband, now walking with a walker and a wheel chair behind him, in case he falls. I can't bear it. And now I can't stop crying. I guess if I were to be talking to Tom right now I would be saying, "I can't handle this, Tom. It hurts so bad...."
I think the "not trusting your emotions" book by James Dobson was probably one of the very first books that I ever read. It's amazing how one can forget things.
Well, Jim will probably need more blood and platelets tomorrow. Jim's next round of chemo is due in 9 days, and he's still natering after the last one. I have no idea what is going to happen. I have to be out of the lodge on Wednesday morn, I believe. Pray that I have the energy to pack up. I can go to Bob and Shelly's. I can stay with Jessie (Mary Jo, make sure you tell Jess, I got her message. I just didn't have enough time to call back) I was thinking of even going home, if John came down. Or I could sleep on a sofa bed at the hospital. I can come back to the lodge 5 nights later. So....well, don't worry about me. I'll be okay. And eventually so will Jim, one way or another. This insanity will end, could be in a day, could be in 25 years. I guess it doesn't really matter. We know who wins in the end. Jesus, and those of us in him. Because we all will eventually enter our rest. Praise God.
Well, Tom called Jim, and that got him a bit motivated. So he ate about 400 calories and took a walk. He's still spiking a temp, but when I left him, he was resting well. The walk wore him out. He walked about 200 feet probably, give or take a few.
On the way back to the Lodge, I called Tom and we chatted a moment, and I was struggling because I told Tom that I didn't know what was happening to me, that I wasn't able to feel compassion for Jim, that about the only thing that I could possibly conjure up was a little bit of anger...not even too much of that either.
I am so black or white, all or nothing. That feeling was just for today, and I end up thinking that it categorizes me as a whole. Well, it doesn't. In bed an hour ago, I let some tears loose, and as I thought of things, more tears feel, and I realized that if I allow myself to feel the pain or suffering that Jim has gone through, that I feel like I'm going to die. So, I must shut it off to continue to survive this, to continue to walk this, to continue to serve Jim in this. It KILLS ME when I even think of what my Jumbo looked like as his ravaged body struggled to walk 200 feet. My herculean husband, now walking with a walker and a wheel chair behind him, in case he falls. I can't bear it. And now I can't stop crying. I guess if I were to be talking to Tom right now I would be saying, "I can't handle this, Tom. It hurts so bad...."
I think the "not trusting your emotions" book by James Dobson was probably one of the very first books that I ever read. It's amazing how one can forget things.
Well, Jim will probably need more blood and platelets tomorrow. Jim's next round of chemo is due in 9 days, and he's still natering after the last one. I have no idea what is going to happen. I have to be out of the lodge on Wednesday morn, I believe. Pray that I have the energy to pack up. I can go to Bob and Shelly's. I can stay with Jessie (Mary Jo, make sure you tell Jess, I got her message. I just didn't have enough time to call back) I was thinking of even going home, if John came down. Or I could sleep on a sofa bed at the hospital. I can come back to the lodge 5 nights later. So....well, don't worry about me. I'll be okay. And eventually so will Jim, one way or another. This insanity will end, could be in a day, could be in 25 years. I guess it doesn't really matter. We know who wins in the end. Jesus, and those of us in him. Because we all will eventually enter our rest. Praise God.
It's one long day
So far this stay has been a 25 day day. It never ends. It just keeps going.
Jim has a fever. High blood pressure. Heart rate's up. He's getting more platelets. His back hurts. His mouth hurts. He's getting antibiotics.
He will not get out of bed for me. He will not do exercises for me. He will not eat for me. So, I'm going to play computer games. I'm tired of pushing for hours and hours. Jim knows what he needs to do to get stronger. I think he's chosing not to, and I am just going to let it go because I can't and don't want to make him do anything he doesn't want to. I think he is hiding in his sleep, hoping it will just take him, which eventually it will. The computer games just take care of my boredom. I would pray nonstop, but what would I say that hasn't been said thousands of times by thousands of people?
I wish I could say it was more positive, but it's not. I guess I'm a bit PO'd. It's one thing to die from cancer, it's another to not eat, let pneumonia set in, etc. because your throat hurts. Wish I would have known that one in advance, cause I could be crying and alone at Christmas in Pittsburgh, rather than down here.
I'm sorry. There I go again, getting angry at my sick husband. This is all so stupid. Ok, now I cry. Like I said, it's just one big long continuum.
Jim has a fever. High blood pressure. Heart rate's up. He's getting more platelets. His back hurts. His mouth hurts. He's getting antibiotics.
He will not get out of bed for me. He will not do exercises for me. He will not eat for me. So, I'm going to play computer games. I'm tired of pushing for hours and hours. Jim knows what he needs to do to get stronger. I think he's chosing not to, and I am just going to let it go because I can't and don't want to make him do anything he doesn't want to. I think he is hiding in his sleep, hoping it will just take him, which eventually it will. The computer games just take care of my boredom. I would pray nonstop, but what would I say that hasn't been said thousands of times by thousands of people?
I wish I could say it was more positive, but it's not. I guess I'm a bit PO'd. It's one thing to die from cancer, it's another to not eat, let pneumonia set in, etc. because your throat hurts. Wish I would have known that one in advance, cause I could be crying and alone at Christmas in Pittsburgh, rather than down here.
I'm sorry. There I go again, getting angry at my sick husband. This is all so stupid. Ok, now I cry. Like I said, it's just one big long continuum.
Saturday, December 6, 2008
I LOVE MY CHURCH - goodies from heaven
I have loved my church for a very long time. For many many reasons. Many posted here. Of course, it's the people. The people who have grown in the Lord and live it.
So, we got this BIG GIGANTIC box loaded with goodies. I got some e-mails from a bunch of nebnoses who want to know what's in it. The nurses, too. I told them they were nebnoses, but they didn't speak Pittsburghese, so...
Oh, thank you so much everyone. You guys are awesome. Our hearts are so warmed by your love and carepackage.
Ok Ok. Here's what we got:
So, we got this BIG GIGANTIC box loaded with goodies. I got some e-mails from a bunch of nebnoses who want to know what's in it. The nurses, too. I told them they were nebnoses, but they didn't speak Pittsburghese, so...
Oh, thank you so much everyone. You guys are awesome. Our hearts are so warmed by your love and carepackage.
Ok Ok. Here's what we got:
- Box cheddar gold fish -yum
- a toe warmer (heat it up in the microwave) (my toes are always cold)
- Craisins
- Big coffee mug
- coffee
- hot chocolate
- Cashews (I will save these for Jim, cause they are protein)
- a beautiful quilt carry bag to carry all my goodies in back and forth
- Everyday with Rachel Ray Magazine
- 4 bags of trail mix
- mm's
- stuffed cuddle bear
- moola, money, cash (thanks, cause I'll be here a while)
- snowman pez (hands off, sonny boy. Mom gots her own now)
- Naughty/Nice Notepad. Jim says not to use it on him. I won't dear
- Magnetic notepad
- a book, "danger in the shadwos by Dee Henderson." I think I have to return it to the church library, but if it's late, they won't charge me... ;)
- big bag of lifesavers
- Knitting needles, crocheting needle, and a hint or two
- yarn (which is great cause I have a knitting pattern book, but no yarn...)
- Crystal Light Iced Tea
- Tums
- Aleve (THANKS)
- Shout stain wipes (GREAT IDEA FOR JIM'S BLOODY T'S)
- Vaseline Lip care
- Celestrial tea - tension tamer (oh yeah, baby)
- gum
- Burts Bees Muscle Mend (I'll use it on Jim. Who will use it on me?) :)
- Christmas socks (Jim said I could have them. Thanks Hon)
- Guidepost Magazine
- Backyard Living - they know what I like...
- candycanes
- Pepperidge Farm Snack sticks
- gold cross necklace (really pretty. I have it on)
- protein bars
- fiber one bars
- word search book w/ pen
- Berry body bath
- hershey kisses
- antibacterial moist wipes
- a beany baby dog, that I names Ruby
- holy bible mints ;)
- 2 squeeze rubber christmas lights, which are our only Christmas Decorations.
That was so much fun, guys. I hope I didn't forget anything. It was as much fun to share...on paper ;) as it was to get. Thank you so much.
Love Gloria
antibiotics
The docs put Jim on another type of antibiotics. This will cover pneumonia, which is good, but I have to get Jim up and walking again, and eating more.
They don't want Jim to get "septic." Whatever that is. That's what could land him in the ICU, and they want to avoid it, of course.
They don't want Jim to get "septic." Whatever that is. That's what could land him in the ICU, and they want to avoid it, of course.
High Fever
Jim's temp is 102.3, and that's 1 hour after tylenol. This is not good. Things are not looking good for Jim. I think there is a very good chance that Jim is going to end up in ICU. If that happens, I think him making it out of there alive will be slim.
There is so much that I can't believe about this that I just don't know where to start. Oh well.
There is so much that I can't believe about this that I just don't know where to start. Oh well.
hard
So far it's been a hard day.
Jim has to take lots of meds. His mouth hurts. His cancer hurts. His butt hurts. The docs say that he is responding to the chemo. The one lump in Jim's neck is gone.
Jim has a temp now, and he is neutropenic. That is not good. The nurse said that she is hearing some air in his breathing.
Jim is whipped. I fed him 1 cup of a nutrition drink. He doesn't want it cause it hurts to swallow. He also doesn't want to do his breather or walk.
So, I ask him, "Honey, are you ready to let go and not fight this any more?" He said, "right now I want to let go. What will happen if I don't do anything I need to do now? I said, "well, you'll get weaker, probably pneumonia, etc. So, he got up, got dressed, did the breather, and took a short walk. He has to go for an Xray. I think they are checking to see if he has pneumonia. If he does, it won't be long before he's in the ICU, and I honestly don't think that he will pull through it.
But perhaps I'm getting ahead of myself. He is in a really tough spot right now. He's exhausted, because these are the worse days of chemo, where you do nothing but sleep, so he wants to be left alone, yet he wants to live, so he needs to eat and get up and walk and do the breather, plus he's in pain. We shall see.
I think I am going to leave for a while and take a break and come back and do the whole thing all over again later.
Jim has to take lots of meds. His mouth hurts. His cancer hurts. His butt hurts. The docs say that he is responding to the chemo. The one lump in Jim's neck is gone.
Jim has a temp now, and he is neutropenic. That is not good. The nurse said that she is hearing some air in his breathing.
Jim is whipped. I fed him 1 cup of a nutrition drink. He doesn't want it cause it hurts to swallow. He also doesn't want to do his breather or walk.
So, I ask him, "Honey, are you ready to let go and not fight this any more?" He said, "right now I want to let go. What will happen if I don't do anything I need to do now? I said, "well, you'll get weaker, probably pneumonia, etc. So, he got up, got dressed, did the breather, and took a short walk. He has to go for an Xray. I think they are checking to see if he has pneumonia. If he does, it won't be long before he's in the ICU, and I honestly don't think that he will pull through it.
But perhaps I'm getting ahead of myself. He is in a really tough spot right now. He's exhausted, because these are the worse days of chemo, where you do nothing but sleep, so he wants to be left alone, yet he wants to live, so he needs to eat and get up and walk and do the breather, plus he's in pain. We shall see.
I think I am going to leave for a while and take a break and come back and do the whole thing all over again later.
Puffy Eye
I can feel the prayers. Thank you.
I was able to get up today, ready to start "it" all over again. By nighttime, I'm ready to quit, leave, cry, throw something, etc. But I'm still getting up, dressed and getting to it.
Yesterday I wrote to my pastor about the church down here, and whether they have a worship session, and I was telling Janie how lonely I am, how I miss my church body, etc. Here's a funny one. Jim and I are members of a small group, for almost a year now. And we've never went to one meeting. LOL. But Amy and Kristen and their husbands are praying, and the whole group is, and I'm not even sure who is in it. But I can feel it.
Then today, I get this big heavy box from....my church. It's like you knew before I even told you how sad and lonely for you that I was. My church was hearing prayers, too.
We really are blessed by wonderful family and friends, and I can't forget that when it's heavy.
And today is heavy, too. The new medical surprise for today is that Jim's left eye is puffy. So, I'm not sure what that is all about.
Jim needed more platelets. Jim's mouth is very sore. So is his back. He has not eaten in days.
My agenda today is to get Jim to eat, to sit up, take a walk, and then we're going to open our box from our church family. It's like Christmas!!!!!!
Talk to you later
Us
I was able to get up today, ready to start "it" all over again. By nighttime, I'm ready to quit, leave, cry, throw something, etc. But I'm still getting up, dressed and getting to it.
Yesterday I wrote to my pastor about the church down here, and whether they have a worship session, and I was telling Janie how lonely I am, how I miss my church body, etc. Here's a funny one. Jim and I are members of a small group, for almost a year now. And we've never went to one meeting. LOL. But Amy and Kristen and their husbands are praying, and the whole group is, and I'm not even sure who is in it. But I can feel it.
Then today, I get this big heavy box from....my church. It's like you knew before I even told you how sad and lonely for you that I was. My church was hearing prayers, too.
We really are blessed by wonderful family and friends, and I can't forget that when it's heavy.
And today is heavy, too. The new medical surprise for today is that Jim's left eye is puffy. So, I'm not sure what that is all about.
Jim needed more platelets. Jim's mouth is very sore. So is his back. He has not eaten in days.
My agenda today is to get Jim to eat, to sit up, take a walk, and then we're going to open our box from our church family. It's like Christmas!!!!!!
Talk to you later
Us
Friday, December 5, 2008
20 bucks says I'm right
Docs say Herpes. I say it's Mucositis. 20 bucks says I'm right. It's why his temp is up, too. That's where the infection is I bet. Eh, but who knows.
Bad news is it is painful and can last for many days. Jim is absolutely misserable and serious about ready to give up. I am too. We both have nothing left to give.
Good night.
Bad news is it is painful and can last for many days. Jim is absolutely misserable and serious about ready to give up. I am too. We both have nothing left to give.
Good night.
update
Jim's got his platelets. He also got 1 unit of blood. They can't give him the other unit because his temp is too high. The meth is working good on the cancer pain, but now the throat/mouth pain is severe.
I think we're both about done with this kind of life...if that's what you want to call it.
I think we're both about done with this kind of life...if that's what you want to call it.
our address here
A few of you asked for our address. Is it as follows:
Jim Baldauff
c/0 National Institutes of Health
Building 10/CRC, Unit 3NW
Room 3164 NW
9000 Rockville Pike
Bethesda, MD 20892
Jim Baldauff
c/0 National Institutes of Health
Building 10/CRC, Unit 3NW
Room 3164 NW
9000 Rockville Pike
Bethesda, MD 20892
Today's new things
Hi All:
I've changed the way the blog is archived because sometimes I update 2,3 times a day, sometimes not. This way might be better.
Well, Jim's pain was better yesterday. He continues to lose the water in his body naturally, but he's also losing more than water, as he is not eating. The thrush is down his esophagus, causing him a lot of pain. He is neutropenic, and he has a fever, so they have him on antibiotics. The roof of his mouth bleeding culture is not back yet, but they think it's Herpes. Herpes? My husband has never had a cold sore. His first roommates had Herpes...and I worried about this thermometer. Not going there, least of my problems. I know 80 percent of the population carry it, but last thing Jim needs is another problem. So, he's using a suction because it's bleeding. Let's see. What else. His pain was better last night, so that is good. His platelets are low, so they are giving him platelets. His Red blood cell count is down, so they are giving him red blood cells, too.
Me, oh my.
I've changed the way the blog is archived because sometimes I update 2,3 times a day, sometimes not. This way might be better.
Well, Jim's pain was better yesterday. He continues to lose the water in his body naturally, but he's also losing more than water, as he is not eating. The thrush is down his esophagus, causing him a lot of pain. He is neutropenic, and he has a fever, so they have him on antibiotics. The roof of his mouth bleeding culture is not back yet, but they think it's Herpes. Herpes? My husband has never had a cold sore. His first roommates had Herpes...and I worried about this thermometer. Not going there, least of my problems. I know 80 percent of the population carry it, but last thing Jim needs is another problem. So, he's using a suction because it's bleeding. Let's see. What else. His pain was better last night, so that is good. His platelets are low, so they are giving him platelets. His Red blood cell count is down, so they are giving him red blood cells, too.
Me, oh my.
Oh Noooo again
Well, first and foremost:
Jim is doing well. He's still in bed and still has blood clot stockings on. He's entered into a new realm that I won't print, so save his dignity.
He seems to think that one of the lymph nodes in his neck is gone. They are still tweaking the pain meds. They are putting him on methadone(meth), trying to see if that works better than the oxycoton and pain pump that he is on now. Last night after his first meth, he felt his throat closing up and there was a rash on his arm. Nurse looked, and there appeared to be a blood blister on the roof of his mouth, which they cultured, and it was bleeding. So, I have no idea what that was.
I'll update more on Jim later if something should change. But here are some crazy things:
Jim is doing well. He's still in bed and still has blood clot stockings on. He's entered into a new realm that I won't print, so save his dignity.
He seems to think that one of the lymph nodes in his neck is gone. They are still tweaking the pain meds. They are putting him on methadone(meth), trying to see if that works better than the oxycoton and pain pump that he is on now. Last night after his first meth, he felt his throat closing up and there was a rash on his arm. Nurse looked, and there appeared to be a blood blister on the roof of his mouth, which they cultured, and it was bleeding. So, I have no idea what that was.
I'll update more on Jim later if something should change. But here are some crazy things:
- I haven't seen the name of Jesus, outside of my bible, Tom & Judy's Visit, and Shelly's.
- I haven't heard a praise song, outside of my Ipod, which is out of battery, or my mouth, which is out of key.
- There is a kwanza candle here at the Lodge.
- There is a Menorrah here at the Lodge.
- There is no manger set to be seen.
- There is cable TV, and I was excited to watch many shows, as I don't have it at home, but:
- HG TV is about getting more beautiful homes..getting getting getting. And half the people are gay, which I don't mind gay people, but I do mind how "normalized" it is.
- History channel...well, I turn that on, and they have a show called "Ganglands" About gangs. What's so historic about that?
- ION has nothing but Boston Legal, which should be called Strange Sex Legal
- Grey's Anatomy..which should be called Strange Sex Medical
- There's CNN, but they have the FOX news network blocked.
- And there are 10 channels where I can watch CSI, NSCI, or something other crime, dead body and gutts show.
- Oh, let's not forget the Victoria Secret Christmas Runway show.
- The Local morman show down here hosts the "holiday light" show.
I could go on and on. I feel like I"m in some strange foreign land. I really believe there is a spiritual covering over my house that is not over this place. I know that I'm not made for this world. But in this environment, I really feel out of place.
Well, I worked out on the cross trainer again this morning, am doing laundry and then I'm off to see Jim and to see what's new today.
So you want to come for Christmas, huh? What Christmas. You bringing me lots of gifts?????? Come on down. ;) j/k....guess I watched to much HGTV....lol
Wednesday, December 3, 2008
OHHHH NOOOOO
Doc came in and said that there's about a 90 percent chance that we won't get out of here before Jim's next infusion, which means I might not be home until Christmas Eve, if even by then.
I can't imagine. I'm so home sick. I can't stand it. I need to pay more bills. I need to order medicine. I need to feed my greenhouse plants. I need to bake butterballs. I need to see my Dad, John and Leah, my sister, my honeybee. I want to go to my church. I want to go to bible study. I want to volunteer for the Christmas stuff. I miss the bell choir. I need some assemblance of a normal life. I haven't had it in so long. I fear I am going nuts.
I have ADHD, as most of you know. Those of you who don't, now you know why I bounce of the walls, etc. The two most important things that someone with ADHD must have...MUST HAVE are
I can't imagine. I'm so home sick. I can't stand it. I need to pay more bills. I need to order medicine. I need to feed my greenhouse plants. I need to bake butterballs. I need to see my Dad, John and Leah, my sister, my honeybee. I want to go to my church. I want to go to bible study. I want to volunteer for the Christmas stuff. I miss the bell choir. I need some assemblance of a normal life. I haven't had it in so long. I fear I am going nuts.
I have ADHD, as most of you know. Those of you who don't, now you know why I bounce of the walls, etc. The two most important things that someone with ADHD must have...MUST HAVE are
- an orderly, scheduled life
- no stress
Well, 18 months of this hospitals, doctors, rollercoasters, chaos is really taking a toll, not only on Jim, but on me, too.
I have to leave the Lodge on the 8th, I believe, and then I'm not allowed to go back for 7 days. After 7 days, I could go back, if there is an opening. So, I have to pack up and....
Not that going home has all the answer either. I'm scared with Jim in so much pain and such. Because this place isn't insurance fed, the don't want to let Jim go home in a half dead condition with tons of narcotics. So, this is good. I just feel like my life is spinning out of control. I'm not sleeping right, exercising right, eating right, worshipping right....
20 more days possibly, if not more? sigh...
Screwing up the blog
Hi Everyone:
Well, I'm glad I didn't post last night, because it would have scared the pants off of everyone. Jim actually thought he was dying. I did too. But I'll spare you the details, and he's alive and having the best day he's had here yet. But I have to get him to walk.
Shelly visited today and brought me some groceries and protein bars for Jim, etc. I'm all loaded up. She didn't bring the boys because Jim's white blood cell count is low. It sure was good to see some family again. She brought a can of tuna, and I was in 7th heaven, as I was craving tuna. Tom & Judy's 12 dollar ham was wearing thin on me...as if 12 dollar ham ever should...
Boy, do I miss my home. As lovely as the Lodge is, there is no place like home.
I wish I would have brought my camera, cause I could have posted a bunch of pics of me and Jim. Well, maybe not. All the ones of Jim would have been the same. White background, eyes closed...
He's still on liquid diet. No solids. Very weak. He's lots 5 pounds of water. 25 more pounds to go.
Well, since I couldn't decorate the house, I thought I would do the blog. YUCKO... And then I lost all my links. Oh well.
Keep us in your prayers. Jim needs strength to make it home before his next treatment, or we may just end up staying here until the next treatment. I couldn't imagine that.
Love Us
BONNIE DEAR.....We just read your letter last night. I didn't want to read it until I could read it together with Uncle Jim. We cried and cried and cried. It blessed both of us so much. What a treasure you are. Thank you for writing of the stories of things you remembered about Uncle Jim when he was young. I wasn't there, and I love hearing them, too. God bless you.
Well, I'm glad I didn't post last night, because it would have scared the pants off of everyone. Jim actually thought he was dying. I did too. But I'll spare you the details, and he's alive and having the best day he's had here yet. But I have to get him to walk.
Shelly visited today and brought me some groceries and protein bars for Jim, etc. I'm all loaded up. She didn't bring the boys because Jim's white blood cell count is low. It sure was good to see some family again. She brought a can of tuna, and I was in 7th heaven, as I was craving tuna. Tom & Judy's 12 dollar ham was wearing thin on me...as if 12 dollar ham ever should...
Boy, do I miss my home. As lovely as the Lodge is, there is no place like home.
I wish I would have brought my camera, cause I could have posted a bunch of pics of me and Jim. Well, maybe not. All the ones of Jim would have been the same. White background, eyes closed...
He's still on liquid diet. No solids. Very weak. He's lots 5 pounds of water. 25 more pounds to go.
Well, since I couldn't decorate the house, I thought I would do the blog. YUCKO... And then I lost all my links. Oh well.
Keep us in your prayers. Jim needs strength to make it home before his next treatment, or we may just end up staying here until the next treatment. I couldn't imagine that.
Love Us
BONNIE DEAR.....We just read your letter last night. I didn't want to read it until I could read it together with Uncle Jim. We cried and cried and cried. It blessed both of us so much. What a treasure you are. Thank you for writing of the stories of things you remembered about Uncle Jim when he was young. I wasn't there, and I love hearing them, too. God bless you.
Tuesday, December 2, 2008
Pain
I all:
I didn't sleep well at all, but feel good, so somebody must be praying. Thanks.
Jim didn't sleep well either. 10 level pain all night. He was in so much pain that he said he doesn't want to do this anymore. He asked me if it was all right for him to die. I told him that it was, and that he didn't have to do anything for me.
However, I don't think he's dying. It just feels that way from so much pain. He moved his bowels this morning, and they are putting him back on oral pains, and he's on full liquid diet. He's voiding A LOT. His numbers are better, and they are giving his Lasix to help get rid of even more water. Why die now, Jim?
Physical therapy came in today, but he's in too much pain to work with them. Once he's back on his oral medication, I think he'll feel better.
Has all the Baldauffs sent in their tests? I know June and Tom has. Junie, check for me, k? Thanks
Love Us
I didn't sleep well at all, but feel good, so somebody must be praying. Thanks.
Jim didn't sleep well either. 10 level pain all night. He was in so much pain that he said he doesn't want to do this anymore. He asked me if it was all right for him to die. I told him that it was, and that he didn't have to do anything for me.
However, I don't think he's dying. It just feels that way from so much pain. He moved his bowels this morning, and they are putting him back on oral pains, and he's on full liquid diet. He's voiding A LOT. His numbers are better, and they are giving his Lasix to help get rid of even more water. Why die now, Jim?
Physical therapy came in today, but he's in too much pain to work with them. Once he's back on his oral medication, I think he'll feel better.
Has all the Baldauffs sent in their tests? I know June and Tom has. Junie, check for me, k? Thanks
Love Us
Monday, December 1, 2008
update
Jim had 2 xrays today. There is no stool blockage. No idea where it went, but it didn't go down the drain, as he has not had a BM. So, no tube.
Because he was nothing by mouth, he could only get his meds through IV, and once again, I am ticked off because they did NOT listen to me again, and Jim writhed in pain all night. Took them all day to get the pain under control. It still isn't great, but.....
I'm not a doctor or a nurse, but I've been in the hospital about 180 days in 2008, and doctoring him at home the rest of the time. I think I know a bit, but no one is interested in listening, and Jim pays the price. Of course, I do, too, but...
So no tube. I have a feeling we won't be out of here for another week, if we ever leave at all.
Because he was nothing by mouth, he could only get his meds through IV, and once again, I am ticked off because they did NOT listen to me again, and Jim writhed in pain all night. Took them all day to get the pain under control. It still isn't great, but.....
I'm not a doctor or a nurse, but I've been in the hospital about 180 days in 2008, and doctoring him at home the rest of the time. I think I know a bit, but no one is interested in listening, and Jim pays the price. Of course, I do, too, but...
So no tube. I have a feeling we won't be out of here for another week, if we ever leave at all.
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