Hi All:
Thanks for your posts. I always forget to check the meter to see about the hits. It's really not a big deal. Like I said, I think it's more that we feel alone when we are down here. See...there I go with that feeling stuff again. ;)
What a day. Jim's CT scan was supposed to be at 12:30. Because of all types of snafu's that I won't bore you with, he didn't get his CT scan until almost 3:30. 10 minutes after getting back, the surgeon said he can see no abscesses from Jim's surgery. That quick it was posted on the computer. But he's not a cancer doc and doesn't read that portion of it, so despite the results being a click away, we couldn't get them. And no one else came, so we have no idea about the cancer and size and such. We hope that because it's a weekend and the team is gone that someone else can give us some info on that, but we will have to wait and see. That's hard to do when you really want to know. Was it hard for you waiting today and wanting to know? Not that it changes anything. You just want to know. But at home, geeze it takes almost a week, so I guess I can't complain.
Jim is supposed to also have a PET scan on Monday. It's 10:30 and Jim just got done bathing. Well, it was such a busy day our heads are spinning. Rather than go on and on, I will just tell some more of the highlights.
LODGE: No room at the Lodge until Feb 5th. Then I can stay until the 8th. Then I have to leave for 2 nights, and then I can come back. What a pain in the neck that is. Then to boot, the social worker tells me that I can get even booted out of that. It's happened to her 3 times this week. So, this is all a bit disappointing. Jim just doesn't want me driving the drive to Bob and Shelley's (I think he wants me close to him, which I understand) but I may have to. But Bob is going out of town and Shelley is out of town until Feb 10th, and I don't know their house and it would be scary to be by myself. Heck a neighbor could knock on the door, and I wouldn't even know if it was a neighbor or not. Anyway.
JIM: We have no idea how long they will keep him here. And with his problems it's scary. If he leaves, has a problem, he has to come back. If I was at the lodge, then leave, that cancels me out, and it's all very complicated. Really, they spent 7 million on a lodge that sleeps 35 people. But it has a grand piano. Why don't they open one of the floors in the old part of the hospital and put up some bunk beds...HELLO....
The surgeon tested Jim's surgery site today and really hurt him. He had to get a shot of dilauded. He turned so red, I thought he was going to have a heart attack. He said it was the worse pain that he ever had. And I believe him. He's also still neutropenic. His immune system is shot. The chemo is destroying him. It's just what they want for the SCT.
He's trying not to worry and rest in the Lord, so this is good. But is the cancer growing or not?
SCT: Turns out, they want to use Bob, and no Bill. Long story and something about the Alleles. Nancy the scientist probably knows all about that, huh Nance? Anyway, they want Bob. So, Billy and Bob, Zetta should have called you by now. I hope this works out okay.
Jim's has a week's worth of screening, starting on the 3rd. Every test imaginable, including another bone marrow biopsy. Even the dentist. Then he has to get some mild chemo, and they will probably do the STC on the 18th of February.
Well, there's more, but that's the important stuff to pray for. I have to get going and add some more nights to my hotel stay before midnight so I can get the same price.
Well, good night my friends. If I work out tomorrow, I'll pray for us all again.
Love Gloria (and Jim)
Friday, January 30, 2009
stuff
Hi Everyone...
Well, we finally got Jim's medicine snafu's in order. That's the biggest problem when going to the hopt here or there.
Jim has a CT scan at about 1:30 or so. This will tell us how large or small the cancer is, and whether we proceed to transplant. He's having less pain from his surgery, but it sure is messy and hard to deal with, and he'll have that for 2 months. They have to find someone who can take care of this Seton while he's down here if we go to SCT.
Bill, have they called you today? I'm surprise nobody called or posted. Is anyone reading any more? I'm sure you are. I always tend to feel more alone down here. But about those feelings...
We are both doing better this morning, in all ways. I think about the many times I've blogged or started my conversations with, "this is so ....I feel so..." After all this time, it's finally dawned on me to stop that. LOL. Wow, isn't that deep.
My feelings are renewed by what I feed my mind, the bible says. When I consider only what I'm feeling and entertain that, it's not good. I need to speak the truth to myself. Last night through someone's prayers, the HS showed me to stop that. Again. Me and Karen spoke the other day and said we sure wish we had a good memory. I know the HS has brought this before me many times. It's in trials when I forget all I learn. By concentrating on God's goodness, and what I wrote in the other blog about, while hard things happens, I'm not abandoned and so forth, I have been able to continue on with faith and hope. So thank you for your prayers everyone. Despite everything we are going through, the enemy of our souls continues to attack attack, as if dancing with death isn't enough for him.
I was able to go to the gym at the hotel this morning and pray for some of you. It was a good time for me. I haven't done that like I used to do that. I'm sorry. I posted a while back about what my friend Amy had told me about people giving me the best that they have, and that has really helped me. So much time has gone by though, and my relationships are so changed, and so is Jim's. I think we need to cut ourselves some of that same grace. But as I do it, I do want to say this. I know I have forgotten your birthdays, not met any of your needs, have been preoccupied with self, despite your own stuff in life. I didn't do much Christmas shopping. No cards. If my dad were reading this, I would write how sorry I am that I haven't been there for you dad. And I miss you. I haven't been a great friend, sister, sister in law, mother, wife, mother in law, christian sister, neighbor, etc. Jim probably feels the same way, too. We want to tell you that we are doing the best we can. We are giving the best that we have to give, too. So, please forgive us if we've hurt you by forgetting a thank you that should have been delivered, if we haven't returned a telephone call, etc. No one's complaining, mind you. I just know that we haven't been ourselves in so very long, and it's all weird, and I want you to know how imperfect we feel and have felt as we have walked through this.
Well, I'll update as soon as I know something.
Thanks guys
Love Gloria & Jim
Well, we finally got Jim's medicine snafu's in order. That's the biggest problem when going to the hopt here or there.
Jim has a CT scan at about 1:30 or so. This will tell us how large or small the cancer is, and whether we proceed to transplant. He's having less pain from his surgery, but it sure is messy and hard to deal with, and he'll have that for 2 months. They have to find someone who can take care of this Seton while he's down here if we go to SCT.
Bill, have they called you today? I'm surprise nobody called or posted. Is anyone reading any more? I'm sure you are. I always tend to feel more alone down here. But about those feelings...
We are both doing better this morning, in all ways. I think about the many times I've blogged or started my conversations with, "this is so ....I feel so..." After all this time, it's finally dawned on me to stop that. LOL. Wow, isn't that deep.
My feelings are renewed by what I feed my mind, the bible says. When I consider only what I'm feeling and entertain that, it's not good. I need to speak the truth to myself. Last night through someone's prayers, the HS showed me to stop that. Again. Me and Karen spoke the other day and said we sure wish we had a good memory. I know the HS has brought this before me many times. It's in trials when I forget all I learn. By concentrating on God's goodness, and what I wrote in the other blog about, while hard things happens, I'm not abandoned and so forth, I have been able to continue on with faith and hope. So thank you for your prayers everyone. Despite everything we are going through, the enemy of our souls continues to attack attack, as if dancing with death isn't enough for him.
I was able to go to the gym at the hotel this morning and pray for some of you. It was a good time for me. I haven't done that like I used to do that. I'm sorry. I posted a while back about what my friend Amy had told me about people giving me the best that they have, and that has really helped me. So much time has gone by though, and my relationships are so changed, and so is Jim's. I think we need to cut ourselves some of that same grace. But as I do it, I do want to say this. I know I have forgotten your birthdays, not met any of your needs, have been preoccupied with self, despite your own stuff in life. I didn't do much Christmas shopping. No cards. If my dad were reading this, I would write how sorry I am that I haven't been there for you dad. And I miss you. I haven't been a great friend, sister, sister in law, mother, wife, mother in law, christian sister, neighbor, etc. Jim probably feels the same way, too. We want to tell you that we are doing the best we can. We are giving the best that we have to give, too. So, please forgive us if we've hurt you by forgetting a thank you that should have been delivered, if we haven't returned a telephone call, etc. No one's complaining, mind you. I just know that we haven't been ourselves in so very long, and it's all weird, and I want you to know how imperfect we feel and have felt as we have walked through this.
Well, I'll update as soon as I know something.
Thanks guys
Love Gloria & Jim
Thursday, January 29, 2009
We need prayer...Bill B. LISTEN UP
Hi Everyone:
Well, we made it. It was a hard trip on Jim, with him having had surgery. But we made it.
We just now, at 7:00 got into Jim's room. It is not a private room, as it is very busy here. And there is no room for me at the Lodge, either. I just did a priceline bid and it wasn't accepted, so I upped what I was willing to spend, and they accepted it. I would have just went to Bobby and Shelley's, but I'm just too tired.
We really need your prayer. Jim's platelet count is not up yet. This is what they wanted to achieve for the SCT, so it's really working for him. Tomorrow...at least they hope it will be tomorrow, they want to do a PET/CT scan. Because Jim's platelets are so low, and his stemcells are shot, if the cancer is reduced pretty well, they plan on STARTING THE TYPING FOR THE STEMCELL NEXT WEEK. BILL..............DON'T GO TO OHIO FOR SURGERY....
Well, this is what we were working towards. And this is what we were afraid we would never get to. Now that it's here, we've been doing nothing but crying. Neither Jim nor I have great faith that this SCT is going to work. We talked to the SCT doctor for a bit. He mentioned one patient with Jim's type of cancer, who went into remission with a SCT and some more chemo. We didn't ask how many he's ever had. We just don't care about that info. We already don't hold out much hope, so we don't want to hear more lousy statistics.
Anyway, we're feeling sad, because without another chemo, we just kind of figure that's 21 days less of time that we get to spend together. We're not trying to be downers, and it's not that we don't believe God can or will work a healing through all of this. We are, however, realistic, and we know how aggressive this cancer is, and we are so sad that this could be the beginning of the end. We love each other so much and we enjoy doing so many things together, and I just can't imagine life without Jim. It's so terrible to see him smiling, knowing that the next month or the month after that could be the last.
I don't ever want to see him in the condition that he was in back in Nov/Dec. But I know that it's possible, probable. I won't belabor the point here. We just ask for prayer. I would rather not have to leave tonight, but there is nothing I can do about that. And it was like cold water in our face to think that last night could have been the last night we would ever cuddle in our king size bed. So, please just pray for us that we continue to live in the present. We have been doing so well with this. I don't want that to change.
Thanks
Us
PS. Bill, you may have to come down as early as next week. They will be in touch with you. Zetta will probably call you tomorrow.
Well, we made it. It was a hard trip on Jim, with him having had surgery. But we made it.
We just now, at 7:00 got into Jim's room. It is not a private room, as it is very busy here. And there is no room for me at the Lodge, either. I just did a priceline bid and it wasn't accepted, so I upped what I was willing to spend, and they accepted it. I would have just went to Bobby and Shelley's, but I'm just too tired.
We really need your prayer. Jim's platelet count is not up yet. This is what they wanted to achieve for the SCT, so it's really working for him. Tomorrow...at least they hope it will be tomorrow, they want to do a PET/CT scan. Because Jim's platelets are so low, and his stemcells are shot, if the cancer is reduced pretty well, they plan on STARTING THE TYPING FOR THE STEMCELL NEXT WEEK. BILL..............DON'T GO TO OHIO FOR SURGERY....
Well, this is what we were working towards. And this is what we were afraid we would never get to. Now that it's here, we've been doing nothing but crying. Neither Jim nor I have great faith that this SCT is going to work. We talked to the SCT doctor for a bit. He mentioned one patient with Jim's type of cancer, who went into remission with a SCT and some more chemo. We didn't ask how many he's ever had. We just don't care about that info. We already don't hold out much hope, so we don't want to hear more lousy statistics.
Anyway, we're feeling sad, because without another chemo, we just kind of figure that's 21 days less of time that we get to spend together. We're not trying to be downers, and it's not that we don't believe God can or will work a healing through all of this. We are, however, realistic, and we know how aggressive this cancer is, and we are so sad that this could be the beginning of the end. We love each other so much and we enjoy doing so many things together, and I just can't imagine life without Jim. It's so terrible to see him smiling, knowing that the next month or the month after that could be the last.
I don't ever want to see him in the condition that he was in back in Nov/Dec. But I know that it's possible, probable. I won't belabor the point here. We just ask for prayer. I would rather not have to leave tonight, but there is nothing I can do about that. And it was like cold water in our face to think that last night could have been the last night we would ever cuddle in our king size bed. So, please just pray for us that we continue to live in the present. We have been doing so well with this. I don't want that to change.
Thanks
Us
PS. Bill, you may have to come down as early as next week. They will be in touch with you. Zetta will probably call you tomorrow.
Wednesday, January 28, 2009
Praise the Lord!
This resting in God stuff is fun and easy when the outcome is our way. :)
Passavant was going to keep Jim. I didn't think it was wise, because they don't have clinic at the NCI until Tuesday, and that's 6 days for Jim's cancer to grow, for him to get sick, and for him to get booted out of his STC. Jim and I talked, and he called the NCI to talk to the docs down there.
I layed in bed, praised the Lord, thought about the beauty of the serenity prayer, and just let it go. And they want Jim down the NCI tomorrow pronto. They are going to admit him into the hopt. Yippee. Even if I don't get to stay at the Lodge, at least I don't have to solve shower problems with Jim at our hotel, his temp, him not getting his chemo, etc. They're care is so great, I can relax and ride my sickness through.
And to top things off, Brother Tom is picking up Jim with his 4 wheel drive.
Wow, I'm excited. It used to take Disney, or catching a 20" bass for me to use that word. I have rearranged. :)
Anyway, we're off tomorrow. I have to run and pack and......oh a billion things. So, pray that we make it there safe.
I'm so happy. It feels like I won one.
:)
AND with Jim being admitted, we have the computer and I can update the blog for those of you addicted to our chaos. (I know you're only addicted because you can say things like, "man am I glad I'm not them." Don't blame you.)
Passavant was going to keep Jim. I didn't think it was wise, because they don't have clinic at the NCI until Tuesday, and that's 6 days for Jim's cancer to grow, for him to get sick, and for him to get booted out of his STC. Jim and I talked, and he called the NCI to talk to the docs down there.
I layed in bed, praised the Lord, thought about the beauty of the serenity prayer, and just let it go. And they want Jim down the NCI tomorrow pronto. They are going to admit him into the hopt. Yippee. Even if I don't get to stay at the Lodge, at least I don't have to solve shower problems with Jim at our hotel, his temp, him not getting his chemo, etc. They're care is so great, I can relax and ride my sickness through.
And to top things off, Brother Tom is picking up Jim with his 4 wheel drive.
Wow, I'm excited. It used to take Disney, or catching a 20" bass for me to use that word. I have rearranged. :)
Anyway, we're off tomorrow. I have to run and pack and......oh a billion things. So, pray that we make it there safe.
I'm so happy. It feels like I won one.
:)
AND with Jim being admitted, we have the computer and I can update the blog for those of you addicted to our chaos. (I know you're only addicted because you can say things like, "man am I glad I'm not them." Don't blame you.)
quickly
Jim's got a temp. Not looking good to go. Does this mean it's all over? Should I pack? Reserve a hotel? I got the ice all scaped off the van and sidewalk in case I have to go get Jim so we can leave. But until I know something, I am going to rest and praise the Lord, because the opportunities to do so are slim. Keep praying. This temp thing could interrupt it all.
What to do
Jim is still in the hospital, potentially being released today. I have to chip through the ice, pay my bills, my dad's bills, go to the bank, get prescriptions filled, pick up Jim, laundry, pack our stuff, load the van, 20 other things and take off tomorrow. AND I'M SICK...
I'm not sure what we are taking off to. Because this Seton surgery that Jim had won't be resolved for 2 months, that takes us into the SCT time. Will they do the transplant with this Seton site not finished, as it can be a source of infection? Does this mean drive down there and stay or not? I don't know. I don't have a hotel room reserved, as I don't even know what is happening. They want us back down their for an EVALUATION. We think we are going for chemo and prep for transplant. Now, we don't know. If there is no chemo and SCT, then it's back home so Jim can go back on hospice so that he die with dignity. This is insane. It's almost laughable, except my laugh might sound like something from that song. "They're coming to take me away, ha ha. They're coming to take me away....to the funny farm, where life is beautiful all the time, and I'll be happy to see those nice young men in their clean white shirts, they're coming to take me away, ho ho hee hee ha ha... So, as I'm walking past the fridge, I saw this. I thought about it, and quickly broke it down into 2 groups of truth. Here's quickly what I came up with and what I have to try and remember.
2 Cor 4:7-18 But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus' sake, so that his life may be revealed in our mortal body.
.... Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.
I have had that scripture on the fridge for months. Broken down, I know that:
I'm not sure what we are taking off to. Because this Seton surgery that Jim had won't be resolved for 2 months, that takes us into the SCT time. Will they do the transplant with this Seton site not finished, as it can be a source of infection? Does this mean drive down there and stay or not? I don't know. I don't have a hotel room reserved, as I don't even know what is happening. They want us back down their for an EVALUATION. We think we are going for chemo and prep for transplant. Now, we don't know. If there is no chemo and SCT, then it's back home so Jim can go back on hospice so that he die with dignity. This is insane. It's almost laughable, except my laugh might sound like something from that song. "They're coming to take me away, ha ha. They're coming to take me away....to the funny farm, where life is beautiful all the time, and I'll be happy to see those nice young men in their clean white shirts, they're coming to take me away, ho ho hee hee ha ha... So, as I'm walking past the fridge, I saw this. I thought about it, and quickly broke it down into 2 groups of truth. Here's quickly what I came up with and what I have to try and remember.
2 Cor 4:7-18 But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus' sake, so that his life may be revealed in our mortal body.
.... Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.
I have had that scripture on the fridge for months. Broken down, I know that:
- The power for this does not come from me, from within, like many would have us believe.
- We are hard-pressed
- We are Perplexed
- We are Persecuted
- We are Struck down
- We carry around in our body the death of Jesus
- Outwardly we are wasting away
- We have troubles
- Our eyes have a tendency to stay stuck in seeing what is in front of us
I also know from this scripture that:
- The power to handle this life is from God.
- We are not crushed
- We are not in despair
- We are not abandoned
- We are not destroyed
- The life of Jesus is revealed in our body
- Inwardly, we are renewed daily
- These troubles are light and momentary
- We have to fix our eyes on what is not seen - HEAVEN, being with GOD, JESUS, HS
- Our troubles achieve for us an eternal glory that outweighs these same troubles
I wish I had about an hour or two to spend breaking these verses down, Kay Arthur style. To study the word "fix." What it means to truly "fix" our eyes on what is not seen. I miss doing that type of bible study, but even real quick, I can pull the truth out of this and carry on. Thank you Lord for that.
THAT....AND YOUR PRAYERS. We really need them. I am extremely exhausted...hey, that wasn't mentioned there, was it? I bet if I studied those words in the Greek, one of them probably means exhausted...lol. Anyway. I would be lost without your prayers.
Gloria
Monday, January 26, 2009
OH NO!!!
My glands are swollen and tender, and I am exhausted. Not a good combo. Please please PLEASE pray that I don't get sick. If I do, I can't be around Jim. And who will take care of him and take him to Maryland. I CANNOT GET SICK....
Recovery
Well, the surgery is over, but it didn't start out well. Jim needed platelets. They gave him 4 units. They put them in soooooooo fast. His eyes started to itch, and I noticed a swelling underneath his eye about the size of a 1/2 of a pencil eracer. The nurse told us to get him if Jim has any reactions. Normally Jim would be calling the nurse right away, but he had just put cleaning gel on his hands and thought he got some in his eyes. But I went to get the nurse and when I came back in, the swelling was about the size of a dime, and then a quarter and then the other eye. They had to rush in and take his vitals, which turned out to be okay, but they had to rush and give him some IV benadryl. He was having an allergic reaction to the platelets. In pre-op he started to cough. I know they were concerned about his throat closing, but I guess it was okay.
Down in the prep room, they could not find a vein to put an IV in. Because he was NPO, he was a bit dehydrated, and they couldn't stick him. They decided to use his hand, which causes extreme pain and he screamed out. It almost killed me. I can't take this poor dear having any more pain.
All of this delayed his surgery.
But now Jim's out of surgery. The doc spent about 15 mins with me explaining what they did and why. It's not pretty. They had to do a Seton, and with Jim's bowel problems, it's tricky. He's not out of the recovery room. He will be on the pain pump again, because this is painful. There are many many hygiene issues and needs. One of them is that Jim has to bath often, and when he has a BM he has to sit on the edge of the tub and spray his bottom off with water because he has strings hanging out of his rectum, and they will get dirty. Then there is wrapping and such that has to go on. Every week or so, Jim will have to go to the doctor and they will have to tighten the string a bit further until it cuts through his sphincter muscle. If they had cut straight thought it, he would have been incontinent. Seton is inserting the string so that all of that is avoided. Plus the string provides drainage.
Well, I know that I'm on my own here Health America will not provide any home nurse care for Jim. So this is scary. And how do I do this when we drive to the NCI? What if he has to go to the bathroom on the way there? And how do I do this at the hotel room? What if they don't have a shower hickie?
OH MY. How do I do it at home. There is broken tile laying in my bathroom. I'm handy, but I can't go home and repair my bathroom. Calgon, take me away. I guess Jim can bath without the tile being repaired, although he'll say he can't. I may be able to install the hand held thing. Does anybody know if they still sell those rubber hand held shower hose thingies that you can put right over the tub downspout so that Jim can use it as a butt cleaner? LOL. I'm sorry. Geeze....Hey, it is what it is.
MARK..........HELP!!!! I don't know where we would be without Mark. For those of you who don't know, Mark is my sister's husband. He's a wonderful man. MARK.....HELP!!!!!
Okay, well. I have to say, it's a miracle that Jim is alive after all this. Heck it's a miracle that I'm alive. A year of straight chemo is enough to kill him alone, but with all these other problems and such, I really do think it's a miracle that he's still got fight in him.
This rectum/anus problem can cause a lot of complications for Jim. Cleanliness is key to there not being an infection. Doctor Crandall called the NIH and they said that as long as the fluid and other stuff is draining and there is not an infection, they will do the SCT. The hanging strings are not only there to tighten cut off the muscle slowly, but to help provide drainage, and they can't clog. We also don't know if the tightening of the strings to slowly cut through the muscle so it's not damaged, will be done before the STC. If not, that provides problems as well, because Jim will be so weakened and cleanliness again is the issue.
Also, Jim cannot be constipated or have too loose of a stool. This is another hurdle that we have no idea how we will leap through, as Jim's bowel problems are what caused this is in the first place.
Well, that's enough of that for a while. It will definately be a miracle if Jim gets through this. This is just too unbelievable. What a strange trip it's been.
Down in the prep room, they could not find a vein to put an IV in. Because he was NPO, he was a bit dehydrated, and they couldn't stick him. They decided to use his hand, which causes extreme pain and he screamed out. It almost killed me. I can't take this poor dear having any more pain.
All of this delayed his surgery.
But now Jim's out of surgery. The doc spent about 15 mins with me explaining what they did and why. It's not pretty. They had to do a Seton, and with Jim's bowel problems, it's tricky. He's not out of the recovery room. He will be on the pain pump again, because this is painful. There are many many hygiene issues and needs. One of them is that Jim has to bath often, and when he has a BM he has to sit on the edge of the tub and spray his bottom off with water because he has strings hanging out of his rectum, and they will get dirty. Then there is wrapping and such that has to go on. Every week or so, Jim will have to go to the doctor and they will have to tighten the string a bit further until it cuts through his sphincter muscle. If they had cut straight thought it, he would have been incontinent. Seton is inserting the string so that all of that is avoided. Plus the string provides drainage.
Well, I know that I'm on my own here Health America will not provide any home nurse care for Jim. So this is scary. And how do I do this when we drive to the NCI? What if he has to go to the bathroom on the way there? And how do I do this at the hotel room? What if they don't have a shower hickie?
OH MY. How do I do it at home. There is broken tile laying in my bathroom. I'm handy, but I can't go home and repair my bathroom. Calgon, take me away. I guess Jim can bath without the tile being repaired, although he'll say he can't. I may be able to install the hand held thing. Does anybody know if they still sell those rubber hand held shower hose thingies that you can put right over the tub downspout so that Jim can use it as a butt cleaner? LOL. I'm sorry. Geeze....Hey, it is what it is.
MARK..........HELP!!!! I don't know where we would be without Mark. For those of you who don't know, Mark is my sister's husband. He's a wonderful man. MARK.....HELP!!!!!
Okay, well. I have to say, it's a miracle that Jim is alive after all this. Heck it's a miracle that I'm alive. A year of straight chemo is enough to kill him alone, but with all these other problems and such, I really do think it's a miracle that he's still got fight in him.
This rectum/anus problem can cause a lot of complications for Jim. Cleanliness is key to there not being an infection. Doctor Crandall called the NIH and they said that as long as the fluid and other stuff is draining and there is not an infection, they will do the SCT. The hanging strings are not only there to tighten cut off the muscle slowly, but to help provide drainage, and they can't clog. We also don't know if the tightening of the strings to slowly cut through the muscle so it's not damaged, will be done before the STC. If not, that provides problems as well, because Jim will be so weakened and cleanliness again is the issue.
Also, Jim cannot be constipated or have too loose of a stool. This is another hurdle that we have no idea how we will leap through, as Jim's bowel problems are what caused this is in the first place.
Well, that's enough of that for a while. It will definately be a miracle if Jim gets through this. This is just too unbelievable. What a strange trip it's been.
Fistulotomy
Okay, I looked it up, but it still seems a bit different than what Jim told me the doc told him, so who knows, but that he goes in today for the surgery.
I have lost track of time and dates, so as I read my devotional this morning, it's the wrong date, of course, but good for me.
From my Streams in the Desert it says:
"God is....an ever-present help in trouble. (Ps. 46:1) But He allows trouble to pursue us, as though He were indifferent to its overwhelming pressure, so we may be brought to the end of ourselves. Through the trial, we are lead to discover the treasure of darkness and the immeasurable wealth of tribulation..."
Boy can I relate to that. My greatest treasure of becoming more Christ-like has always come in the clouds of my weathered walk with the Lord, and not in the sun. And yet despite that, it still feels as though He really is indifferent to its overwhelming pressure...but I know that He isn't.
...so we may be brought to the end of ourselves," tells me a few things real quick at first glance.
1. I must have a lot of self. Seems like God is an ever present help in trouble. And that Dolly is in ever-present trouble, and needs help. LOL.
2. The trouble may never end if it's sole purpose is so that I can come to the end of myself. Because I know that I will not be at the end of my self until I draw my last breath. Not because I desire to be that way, but because self is my default setting. Reminds me of what it says in the book of Job. For man is born for trouble, as sparks fly upward. I wonder what Mr. Olsteen's spin would be on that verse....hmmm. Anyway
So, is it any wonder I, we, everyone, needs a savior to save us from our sin, our self.
...and so, we also need a savior to save us from things like cancer and botched surgeries, and other things, so join me in prayer today for Jim.
Last night I got word that a lady friend of mine from bible study, the sweetest dear woman... A few times we would be in the same hopt. with our husbands at the same time, and I would visit with her and she with me, and we would talk about the Lord, our fears, struggles, etc. Her husband died of prostate cancer last night, and my heart goes out to her, and I don't know that I will be able to go and give her my condolences. If you are reading this and from our church, will you please tell her for me, how blessed I am to know her, and how sad I am for her. I think of her and her dear husband laying in bed, praying for me and Jim, and I think of how God made us a family, and I wish there was something I could do for her. Tell her I love her. Thanks.
I have lost track of time and dates, so as I read my devotional this morning, it's the wrong date, of course, but good for me.
From my Streams in the Desert it says:
"God is....an ever-present help in trouble. (Ps. 46:1) But He allows trouble to pursue us, as though He were indifferent to its overwhelming pressure, so we may be brought to the end of ourselves. Through the trial, we are lead to discover the treasure of darkness and the immeasurable wealth of tribulation..."
Boy can I relate to that. My greatest treasure of becoming more Christ-like has always come in the clouds of my weathered walk with the Lord, and not in the sun. And yet despite that, it still feels as though He really is indifferent to its overwhelming pressure...but I know that He isn't.
...so we may be brought to the end of ourselves," tells me a few things real quick at first glance.
1. I must have a lot of self. Seems like God is an ever present help in trouble. And that Dolly is in ever-present trouble, and needs help. LOL.
2. The trouble may never end if it's sole purpose is so that I can come to the end of myself. Because I know that I will not be at the end of my self until I draw my last breath. Not because I desire to be that way, but because self is my default setting. Reminds me of what it says in the book of Job. For man is born for trouble, as sparks fly upward. I wonder what Mr. Olsteen's spin would be on that verse....hmmm. Anyway
So, is it any wonder I, we, everyone, needs a savior to save us from our sin, our self.
...and so, we also need a savior to save us from things like cancer and botched surgeries, and other things, so join me in prayer today for Jim.
Last night I got word that a lady friend of mine from bible study, the sweetest dear woman... A few times we would be in the same hopt. with our husbands at the same time, and I would visit with her and she with me, and we would talk about the Lord, our fears, struggles, etc. Her husband died of prostate cancer last night, and my heart goes out to her, and I don't know that I will be able to go and give her my condolences. If you are reading this and from our church, will you please tell her for me, how blessed I am to know her, and how sad I am for her. I think of her and her dear husband laying in bed, praying for me and Jim, and I think of how God made us a family, and I wish there was something I could do for her. Tell her I love her. Thanks.
Sunday, January 25, 2009
Brrrrrrr
It sure is cold out there. I just got home from the hopt. Went to visit Jim, and my dear Sister Mary Jo took me to the Cheesecake Factory for dinner, and then I went back to the hopt. to be with Jim.
I just got home, and it's cold out there. Brrrrr. Well, tomorrow is Jim's surgery. Words like fistula and seton are used, but not sure what it's about in all ways, and I'm not looking it up. I'm cold and going to bed. Pray that this goes well, is minor and does not interfer with Jim's trial, or we are in trouble.
Bob (Davey) I have no idea if we are still going to MD because of the surgery tomorrow. I will let you know asap.
Mary Jo, thanks so much for dinner. You are such a beautiful woman, person.
Amy, I'm wondering how your foot is. I sure hope it's healing well.
Good night folks.
I just got home, and it's cold out there. Brrrrr. Well, tomorrow is Jim's surgery. Words like fistula and seton are used, but not sure what it's about in all ways, and I'm not looking it up. I'm cold and going to bed. Pray that this goes well, is minor and does not interfer with Jim's trial, or we are in trouble.
Bob (Davey) I have no idea if we are still going to MD because of the surgery tomorrow. I will let you know asap.
Mary Jo, thanks so much for dinner. You are such a beautiful woman, person.
Amy, I'm wondering how your foot is. I sure hope it's healing well.
Good night folks.
Saturday, January 24, 2009
Surgery
Well, it's not as bad as we first thought. Jim misunderstood the doctor. Jim HAS to have this minor surgery or "you will die." The infection will just spread too fast. He's probably had it for a few weeks, which is why he had the temp last time. When he was neutropenic, it started to grow. We're assuming here, but. Anyway.
If Jim doesn't have the surgery, that will have to delay the chemo because Jim would not survive another chemo with this type of infection, because it's in his rectal area. Doc said that Jim might have to delay the chemo a day or two. They will contact the NIH on Monday for feedback, but the doctor said he doesn't care what they say down there, that Jim HAS to have this procedure. What they will do is put Jim under, and lance/slice something inside that is not draining properly (okay, this is gross, but his brothers and sisters neices and nephews love him and need to know what is going on, so friends, bear with us, here, although I know you love him too. I know that friends of friends read this too, and wonder why I talk so freely about things. Well....go read a sports blog...). They have to do this so that it will drain and stop being infected and Jim has to go on antibiotics and....I don't know. I'm wondering if the NIH will want him to go down there and do it, will they give him the chemo after this procedure. Will Jim even be able to sit on his behind, particularly for a 5 hour drive. Who knows. Those are next week's issues.
Well, I know this. I got all huffy as I was preparing to leave for the hospital for yet another frenzied problem. Janet called and said, "I feel so bad. Everytime I call, I seem to catch you in the middle of something." I had to laugh cause I'm always caught in the middle of something. So, I got off the phone and into the car. I wasn't out of the driveway when I called her and was pretty much balanced with the new development. All of this stuff brings Jim and I into totally different level of letting go, of not being control freaks, of trusting God. If we dwell on all the problems that could arise out of this new problem, well, then I'm sunk. But I practice letting go (and I have many opportunities to practice this daily), we do so much better. I'm learning the secret of joy amidst the problems. This is good. I'm not an expert, but I'm learning.
You have my permission to remind me of this often. :)
If Jim doesn't have the surgery, that will have to delay the chemo because Jim would not survive another chemo with this type of infection, because it's in his rectal area. Doc said that Jim might have to delay the chemo a day or two. They will contact the NIH on Monday for feedback, but the doctor said he doesn't care what they say down there, that Jim HAS to have this procedure. What they will do is put Jim under, and lance/slice something inside that is not draining properly (okay, this is gross, but his brothers and sisters neices and nephews love him and need to know what is going on, so friends, bear with us, here, although I know you love him too. I know that friends of friends read this too, and wonder why I talk so freely about things. Well....go read a sports blog...). They have to do this so that it will drain and stop being infected and Jim has to go on antibiotics and....I don't know. I'm wondering if the NIH will want him to go down there and do it, will they give him the chemo after this procedure. Will Jim even be able to sit on his behind, particularly for a 5 hour drive. Who knows. Those are next week's issues.
Well, I know this. I got all huffy as I was preparing to leave for the hospital for yet another frenzied problem. Janet called and said, "I feel so bad. Everytime I call, I seem to catch you in the middle of something." I had to laugh cause I'm always caught in the middle of something. So, I got off the phone and into the car. I wasn't out of the driveway when I called her and was pretty much balanced with the new development. All of this stuff brings Jim and I into totally different level of letting go, of not being control freaks, of trusting God. If we dwell on all the problems that could arise out of this new problem, well, then I'm sunk. But I practice letting go (and I have many opportunities to practice this daily), we do so much better. I'm learning the secret of joy amidst the problems. This is good. I'm not an expert, but I'm learning.
You have my permission to remind me of this often. :)
Saturday's stuff
Well, Jim's not coming home. He has an infection that requires minor surgery. The doc says that his chemo will have to be delayed, and I'm running out there before anybody messes his trial up.
Janet if you're reading this, our soup and visit will have to be delayed unless you want to come to the hopt.
Janet if you're reading this, our soup and visit will have to be delayed unless you want to come to the hopt.
Friday, January 23, 2009
???
Was talking to my sister Ruthie today and found myself saying. I cleaned the bathroom floor on my hands and knees and loved it. Wow. I've been away from home too long. No news on if Jim comes home.
2 a.m. mind ramblings
HI there:
Yeah. I can't sleep without my Jumbo. I laid there, and it felt too much like what it would be without him. So I prayed a bit, cried a bit, and came to shut off the computer. But I saw footprints in the snow. Someone else cutting through my yard. I hate it. It scares me. And I checked my e-mail.
My friend e-mailed me and said she understood my "worse case scenario" (WCS) type of thinking, but she misunderstood some of it, and I thought some of you may have too, so I thought I would clarify for her and anyone else out there.
There is a very real possibility that my Jumbo will not survive this cancer. And when signs point that way, I like to be ready for the ride, the WCS. How I get ready is by putting my seatbelt on. I am then strapped to my Jesus. I feel anxiety about it, yes. Mainly because I’m wired that way. 47 years old, and I still bite my nails like a little girl. And I’ll feel some sadness. But I DO NOT feel abandoning despair, extreme fear, a shaking in my boots. I have been there, and my world didn’t end. Jesus said he would never leave me or forsake me. He is trustworthy. I really really do know that. Sometimes I have to remind my feelings about that, sure. But after my emotional pendulum stops swinging, I’m always okay.
Also, I only entertain highly possible WCS’s, not an every-possible-thing-in-the-world type of WCS that can happen. Gosh, I would have ulcers or heart problems. I don’t spend the whole day, day after day, thinking things like I bet I have cancer, or I’m going to get robbed, or I’m going to end up homeless, or I’m not going to make it, or I'm not going to have any insurance, etc.
And I can be very optimistic, too. But that doesn't come out nearly as much as the negative stuff. First off, this is our journey through cancer blog. Not a tiptoe through the tulips trek. But still, I think about the negative stuff coming out, and I think this is why. First, I feel my feelings out loud. It clears my mind. As I hear myself speak, later on into the day, I work through it. Over and over again…Year after year sometimes. But I want to get better, and it’s the best way that works for me. Pretending and wearing masks don’t do it for me either. It’s very hard for me to wear masks. I know that there are people reading this blog who think I am ridiculous. Guess what :-P~~~~~~~~~~~~ on that. I know I could just type fluffy platitudes and be polite and speak churchianity and say things so that everyone would think I’m wonderful. But the truth is people, I’m not wonderful. I’m a wonderful sinner. And I don't want to stay that way. And when I bring all this crap out into the light. Jesus can shine His light on it. And then he mops it up, and I’m a smidgeon cleaner afterwards. And yeah, I may have some who judge me. And I have many who love me. And they are the ones I seek.
Another wrong thing I do sometimes is as I am sharing my trials and burdens, I find myself wanting pity. And this is NOT good. And this wanting pity, makes me bellyache more, despite the fact that every single day through out this horrible mess, I find some great goodness in each day, one way or another. I think the main reason I can fall into the bellyaching pity thing is because this is so hard to walk alone, and I want someone to hurt like I do. Not because I want that someone else to hurt like me, but I don’t want to have to carry it all myself or feel it all myself. But the truth is, no one else can feel this as badly as Jim and I. Not even close. And that’s good. I wouldn’t want to have to feel your pain as sharply as you do either. We all have enough of our own.
And another thing is that is really has been crazy, and I don't know how to spin it into anything more than what it is. And it's been a real pain in the ( Y ) (that's supposed to look like a butt).
I think the other thing I seek through my bellyaching is validation. And I want more than, “wow this is tough stuff, Dolly.” I guess I want to know that I am okay just the way I am. Almost like seeking your approval. But why? Why? Oh who the heck knows. It’s 2:30. LOL. I'm going to bed.
Good night.
Yeah. I can't sleep without my Jumbo. I laid there, and it felt too much like what it would be without him. So I prayed a bit, cried a bit, and came to shut off the computer. But I saw footprints in the snow. Someone else cutting through my yard. I hate it. It scares me. And I checked my e-mail.
My friend e-mailed me and said she understood my "worse case scenario" (WCS) type of thinking, but she misunderstood some of it, and I thought some of you may have too, so I thought I would clarify for her and anyone else out there.
There is a very real possibility that my Jumbo will not survive this cancer. And when signs point that way, I like to be ready for the ride, the WCS. How I get ready is by putting my seatbelt on. I am then strapped to my Jesus. I feel anxiety about it, yes. Mainly because I’m wired that way. 47 years old, and I still bite my nails like a little girl. And I’ll feel some sadness. But I DO NOT feel abandoning despair, extreme fear, a shaking in my boots. I have been there, and my world didn’t end. Jesus said he would never leave me or forsake me. He is trustworthy. I really really do know that. Sometimes I have to remind my feelings about that, sure. But after my emotional pendulum stops swinging, I’m always okay.
Also, I only entertain highly possible WCS’s, not an every-possible-thing-in-the-world type of WCS that can happen. Gosh, I would have ulcers or heart problems. I don’t spend the whole day, day after day, thinking things like I bet I have cancer, or I’m going to get robbed, or I’m going to end up homeless, or I’m not going to make it, or I'm not going to have any insurance, etc.
And I can be very optimistic, too. But that doesn't come out nearly as much as the negative stuff. First off, this is our journey through cancer blog. Not a tiptoe through the tulips trek. But still, I think about the negative stuff coming out, and I think this is why. First, I feel my feelings out loud. It clears my mind. As I hear myself speak, later on into the day, I work through it. Over and over again…Year after year sometimes. But I want to get better, and it’s the best way that works for me. Pretending and wearing masks don’t do it for me either. It’s very hard for me to wear masks. I know that there are people reading this blog who think I am ridiculous. Guess what :-P~~~~~~~~~~~~ on that. I know I could just type fluffy platitudes and be polite and speak churchianity and say things so that everyone would think I’m wonderful. But the truth is people, I’m not wonderful. I’m a wonderful sinner. And I don't want to stay that way. And when I bring all this crap out into the light. Jesus can shine His light on it. And then he mops it up, and I’m a smidgeon cleaner afterwards. And yeah, I may have some who judge me. And I have many who love me. And they are the ones I seek.
Another wrong thing I do sometimes is as I am sharing my trials and burdens, I find myself wanting pity. And this is NOT good. And this wanting pity, makes me bellyache more, despite the fact that every single day through out this horrible mess, I find some great goodness in each day, one way or another. I think the main reason I can fall into the bellyaching pity thing is because this is so hard to walk alone, and I want someone to hurt like I do. Not because I want that someone else to hurt like me, but I don’t want to have to carry it all myself or feel it all myself. But the truth is, no one else can feel this as badly as Jim and I. Not even close. And that’s good. I wouldn’t want to have to feel your pain as sharply as you do either. We all have enough of our own.
And another thing is that is really has been crazy, and I don't know how to spin it into anything more than what it is. And it's been a real pain in the ( Y ) (that's supposed to look like a butt).
I think the other thing I seek through my bellyaching is validation. And I want more than, “wow this is tough stuff, Dolly.” I guess I want to know that I am okay just the way I am. Almost like seeking your approval. But why? Why? Oh who the heck knows. It’s 2:30. LOL. I'm going to bed.
Good night.
Thursday, January 22, 2009
OH MY GOSH
You have to go to my friend Maddy's blog and watch this STEELER video. And check out her cool Steeler/Valentine's Day wallpaper. Maddy, you're too cool.
http://romans5.blogspot.com/
http://romans5.blogspot.com/
The maker of great days
Do I know how to party or what? I had a great day. Jim no longer has a temp since being on the antibiotics. The doctor doesn't think it's the cancer returning. This is how Gloria has a great day. See. Works for me. Serious. When I embrace the idea that my world can crash in at any moment, when it doesn't, it's grand.
Jim did have to get another 2 units of blood. He was really low. So, he's feeling much better. He's been fighting with the nurses because they wouldn't give him bowel medicine. He had to beg them for his neupogen shot. It was after 12 midnight last night and they were just going to skip that dose, because the nurse didn't want to bug the doctor on call?????? But Jim made her, which was good. I mean, he is neutropenic... They didn't order his pain meds, and were going to just skip his dose. So, Jim said, well, I brought my own, and she demanded them off of him, telling him he can't take his own meds. And he refused, and she said it's hospital policy that you are not allowed to have any meds. And he said, it's my policy to take care of myself. I don't want to get the shakes and blah blah blah. But this one is the best. He gets antibiotics every 12 hours. He didn't know that. So, he got his first IV bag. Then he got the blood transfusion. The doctor came in later today and said, well, you're responding well to the 2 antibiotic treatments. Jim said, "I only got one." The doc looks into it. Well, Jim's second one was due, but they were giving him the blood, and it took 3 hours, so the nurse thought that Jim might as well just skip that dose of antibiotic. Once again Doc Cran....was yelling at the nurse. Can you imagine being in the hospital...oh forget it. You get the picture. Anyway, he's doing really well, and will be home tomorrow probably.
I tried a little retail therapy. Boring...I bought a bathroom rug on sale for 6 bucks. I bought the newspaper and took my fat ol' self and got some mexican food for dinner. Yum Yum. I miss my Jumbo. I would rather eat poptarts at home with him, than eat out without him.
Oh, And Ruth THANK YOU THANK YOU THANK YOU for cleaning my fridge yesterday. It smells sooooooooo nice. And the pecans and book and other surprises. You sneak. :) You looked so good. SO GOOD. It was nice to see some family (OTHER THAN MY SISTER..shhhh, don't tell her I said that.) We felt bad that you were there doing that. Sorry it was a bit chaotic while you were here. That's just the way it is though. But thank you. That was so kind. I hope the jewelry wasn't overwhelming. Also, thanks for the turkey soup. It was delicious.
Jim did have to get another 2 units of blood. He was really low. So, he's feeling much better. He's been fighting with the nurses because they wouldn't give him bowel medicine. He had to beg them for his neupogen shot. It was after 12 midnight last night and they were just going to skip that dose, because the nurse didn't want to bug the doctor on call?????? But Jim made her, which was good. I mean, he is neutropenic... They didn't order his pain meds, and were going to just skip his dose. So, Jim said, well, I brought my own, and she demanded them off of him, telling him he can't take his own meds. And he refused, and she said it's hospital policy that you are not allowed to have any meds. And he said, it's my policy to take care of myself. I don't want to get the shakes and blah blah blah. But this one is the best. He gets antibiotics every 12 hours. He didn't know that. So, he got his first IV bag. Then he got the blood transfusion. The doctor came in later today and said, well, you're responding well to the 2 antibiotic treatments. Jim said, "I only got one." The doc looks into it. Well, Jim's second one was due, but they were giving him the blood, and it took 3 hours, so the nurse thought that Jim might as well just skip that dose of antibiotic. Once again Doc Cran....was yelling at the nurse. Can you imagine being in the hospital...oh forget it. You get the picture. Anyway, he's doing really well, and will be home tomorrow probably.
I tried a little retail therapy. Boring...I bought a bathroom rug on sale for 6 bucks. I bought the newspaper and took my fat ol' self and got some mexican food for dinner. Yum Yum. I miss my Jumbo. I would rather eat poptarts at home with him, than eat out without him.
Oh, And Ruth THANK YOU THANK YOU THANK YOU for cleaning my fridge yesterday. It smells sooooooooo nice. And the pecans and book and other surprises. You sneak. :) You looked so good. SO GOOD. It was nice to see some family (OTHER THAN MY SISTER..shhhh, don't tell her I said that.) We felt bad that you were there doing that. Sorry it was a bit chaotic while you were here. That's just the way it is though. But thank you. That was so kind. I hope the jewelry wasn't overwhelming. Also, thanks for the turkey soup. It was delicious.
Wednesday, January 21, 2009
Hospital visit number 22...or is it 23?
Yes, Jim's in the hopt. He needs a blood transfusion, platelets, and he has a temp.
He didn't have a temp. all day, but it started getting high again as the evening came. I'm scared. I said to the doctors down there? Are you sure you want to do another chemo? His cancer grows back in the midst of it and fast. They didn't concur. I'm not so sure it's the cancer either. No one is. Time will tell.
I think what I am doing is what I've tended to do most of my life. Go for the worse case scenerio. This way when it comes, I won't be surprised by the hardship. And if it's not the hardship, well, then geeze, that's great news. That's my kind of great news. I'm surprised at how this is hitting me. I can't stop crying today.
I talked with a friend about how I feel the Lord is purging me of everything. EVERYTHING, even things that are good. It scares me to think it could be the cancer back. Not that I thought the SCT or chemo would give us "happily ever after," but it did give me a reprieve from extreme grief. Well. It's back. And it may be premature. I don't know. So, please don't join me on this worry trip. It's just what I need to do. But like I said, if it's not the cancer, well, geeze. I've had some great news this week. Hey, we learn to take what we can get, don't we?
Peace
Gloria
He didn't have a temp. all day, but it started getting high again as the evening came. I'm scared. I said to the doctors down there? Are you sure you want to do another chemo? His cancer grows back in the midst of it and fast. They didn't concur. I'm not so sure it's the cancer either. No one is. Time will tell.
I think what I am doing is what I've tended to do most of my life. Go for the worse case scenerio. This way when it comes, I won't be surprised by the hardship. And if it's not the hardship, well, then geeze, that's great news. That's my kind of great news. I'm surprised at how this is hitting me. I can't stop crying today.
I talked with a friend about how I feel the Lord is purging me of everything. EVERYTHING, even things that are good. It scares me to think it could be the cancer back. Not that I thought the SCT or chemo would give us "happily ever after," but it did give me a reprieve from extreme grief. Well. It's back. And it may be premature. I don't know. So, please don't join me on this worry trip. It's just what I need to do. But like I said, if it's not the cancer, well, geeze. I've had some great news this week. Hey, we learn to take what we can get, don't we?
Peace
Gloria
Temp
Did I ever say Happy New Year? Well, Happy New Year.
Jim had a high temp in the middle of the night, but he didn't wake me up. RRRRRRRR. It's not high now, though. But that is scary. Is the cancer growing back? Which scares us and we talked to the docs about this, and how fast the cancer grows back. They are very good down there, but they don't know the history and they don't focus on that. They focus on their science. So to have come this far for the cancer to be growing back is scary. But who knows. Could be a light infection. We just really don't know. Ever. Anything.
When we head down there on the 27th or 29th, will it be with cancer growing back, and will they do something else, or will it be for the next cycle of EPOCH and if so, will we stay there until the SCT? I'm not sure.
Because we don't have a laptap and are not staying at the lodge or the hopt. I will not have a computer and will not be able to update the blog. Perhaps it will be a good time to transition out of blogging. Not sure.
Anyway, that's the latest update.
Monday, January 19, 2009
Today's Excellent Adventure
Today no one is real sick...so far, but 9 tile on our bathroom shower fell down. That's fun. Gotta love 1950's pink and blue bathroom tile, especially WHEN IT FALLS DOWN. BUT NOT WHEN JIM IS SICK... But hey, it matches the blue sink and toilet....sigh..., so I guess we'll just glue them ole beauties back up there. If Jim weren't sick. IT WOULD STAY DOWN.
Sunday, January 18, 2009
Double Whammy
Yeah, so when I go back to Raven Country (Bethesda, Maryland) on the 29th, 2 days before the superbowl, I'll not only wear my Steelers AFC Champion shirt, but I think on the back of the shirt, just for spite, I'll have the slogan added.
"AND I VOTED FOR JOHN MCCAIN TOO."
That's what they get for not letting us stay at the lodge next trip and having to go to the hotel...
"AND I VOTED FOR JOHN MCCAIN TOO."
That's what they get for not letting us stay at the lodge next trip and having to go to the hotel...
Saturday, January 17, 2009
Sick sick sick
And I'm sick to death of sick.
Once wasn't enough. I had to get the stomach flu twice. So, I've been sick with temp. and bad stomach and all that comes with it...again. Geeze, it hasn't even been a month yet since the last time I was sick with this same malady.
I'm a bit mad at God right now for allowing YET ANOTHER calamity to fall upon us when the other 20 haven't cleared up yet. But I'll get over it. I feel I'm reaching Job status in the suffering department, but not Job status in not sinning against God in my suffering. Which makes my distorted/tormented mind say things like, "which means I'll get more suffering until I get it straight." But I know that can't be right, because everyone would have this type of suffering. Which leads me to my next distorted/tormented thought which goes something like this.
Oh forget it!!! Who really cares about my ramblings anyway.
Allow me just to report. Jim is doing well. I have given him 3 injections so far, and that's gone well. I was afraid of getting him sick, but so far he's fine. Imagine that. A man who has gotten chemo for a year straight has a better immune system than mine. Dahhhh. Now if it could only get to work on the cancer, but it just can't.
Once wasn't enough. I had to get the stomach flu twice. So, I've been sick with temp. and bad stomach and all that comes with it...again. Geeze, it hasn't even been a month yet since the last time I was sick with this same malady.
I'm a bit mad at God right now for allowing YET ANOTHER calamity to fall upon us when the other 20 haven't cleared up yet. But I'll get over it. I feel I'm reaching Job status in the suffering department, but not Job status in not sinning against God in my suffering. Which makes my distorted/tormented mind say things like, "which means I'll get more suffering until I get it straight." But I know that can't be right, because everyone would have this type of suffering. Which leads me to my next distorted/tormented thought which goes something like this.
Oh forget it!!! Who really cares about my ramblings anyway.
Allow me just to report. Jim is doing well. I have given him 3 injections so far, and that's gone well. I was afraid of getting him sick, but so far he's fine. Imagine that. A man who has gotten chemo for a year straight has a better immune system than mine. Dahhhh. Now if it could only get to work on the cancer, but it just can't.
Wednesday, January 14, 2009
We need prayer
Hi folks:
I joke to keep me going. But I've noticed my jokes are pretty lame. A sign that I'm not going as well as I once did.
We need prayer.
Me, I am overwhelmed. I'm not going to type everything that I have to face and such. There is so much. And it's not about being a silent sufferer or offering it up, but I don't want to make the list. Seeing it would overwhelm me more. Just please pray for me.
And Jim. His Neuropathy (numbness) is sooooo bad. From his toes to his beldy (belly). He went down in pain meds, but the pain is there. Will the tumors shrink any more? There's a chance they won't. Will he make it to the SCT? And on and on and on.
Yesterday I wrote to a friend and thought that the cross that she walked for many years was harder than this. I was in a better place, Rach. :) Truth is there is no need to compare, and comparing apples with oranges is dumb anyway. WE ALL NEED GOD'S PRAYER, MERCY, GRACE, LOVE, COMPASSION, SPIRIT, ETC. None of us were created for the fruit of sin of this world, and it's just hard, period.
Maddy and Thelma, 2 friends from church whose husbands have cancer have tons of struggles, too. Thelma had to get cancerous tissue removed from her face in middle of her dear husband's hospice care. And Maddy....well, she posts here, go read her blog. She does all the cancer care and works and such, and her husband has had chronic pain for 10 years...before the cancer stint. But you know what I was thinking...again....I mean this is nothing new. This paragraph of pain doesn't mean someone else's migraine or paper cut (which we know can hurt and get infected) shouldn't cause them to cry because it doesn't compare. The truth is, we were created to have what we won't have until we go and be with our Lord and Savior. In the meantime, let's just be encouraged to love each other and pray for each other.
YOU FIRST....
:)
That was kinda funny there at the end, wasn't it? I haven't lost it all, have I?
Gloria
I joke to keep me going. But I've noticed my jokes are pretty lame. A sign that I'm not going as well as I once did.
We need prayer.
Me, I am overwhelmed. I'm not going to type everything that I have to face and such. There is so much. And it's not about being a silent sufferer or offering it up, but I don't want to make the list. Seeing it would overwhelm me more. Just please pray for me.
And Jim. His Neuropathy (numbness) is sooooo bad. From his toes to his beldy (belly). He went down in pain meds, but the pain is there. Will the tumors shrink any more? There's a chance they won't. Will he make it to the SCT? And on and on and on.
Yesterday I wrote to a friend and thought that the cross that she walked for many years was harder than this. I was in a better place, Rach. :) Truth is there is no need to compare, and comparing apples with oranges is dumb anyway. WE ALL NEED GOD'S PRAYER, MERCY, GRACE, LOVE, COMPASSION, SPIRIT, ETC. None of us were created for the fruit of sin of this world, and it's just hard, period.
Maddy and Thelma, 2 friends from church whose husbands have cancer have tons of struggles, too. Thelma had to get cancerous tissue removed from her face in middle of her dear husband's hospice care. And Maddy....well, she posts here, go read her blog. She does all the cancer care and works and such, and her husband has had chronic pain for 10 years...before the cancer stint. But you know what I was thinking...again....I mean this is nothing new. This paragraph of pain doesn't mean someone else's migraine or paper cut (which we know can hurt and get infected) shouldn't cause them to cry because it doesn't compare. The truth is, we were created to have what we won't have until we go and be with our Lord and Savior. In the meantime, let's just be encouraged to love each other and pray for each other.
YOU FIRST....
:)
That was kinda funny there at the end, wasn't it? I haven't lost it all, have I?
Gloria
Tuesday, January 13, 2009
We're Home
Hi We're home. And I'm beat. Just another day that starts very early, works hard on me all day, and then ends late. I have to call our insurance and see if I can get some home nursing. At the end of a day like this, I sometimes think I can't do it any more. Now, of course, I wake up, rearing to go, but we're like on day 500 or so of this, and I'm afraid one day I will wake up and won't be rearing... I guess it doesn't help that I have to give Jim a shot every day for the next 10 days.
Here's an example of governmental insanity. They give us 10 needles, gloves, a box of alcohol wipes, a little box to dispose of the needles so I can take them to the hospital to dispose of (I guess in my free time...lol) and they give us 10 bottles of this medicine that I have to inject into Jim. Each bottle costs 1700.00. So, I have 17000.00 dollars worth of meds in my fridge (no milk) and yet, they never gave me a syringe, some water and an orange or whatever to practice on. Now how dumb is that? So, I practice on Jim? And if I make a mistake, um, I don't have 1700.00 to replace it. What if I drop one? Sell one? Tee hee hee. Anybody want to score some neupogin? Anyways, by the time my insurance would approve home nursing, I would probably be proficient in giving shots, huh? Well, it was a thought. Maybe they'll pay for a chauffeur to drive us back and forth. How about a cleaning person? A cook? A banker? Just a nurse for 10 days....Come on Death America. Do something. Okay, well then, just call me Nurse Hatchet. Or is it Ratchet? Poor Jim.
I'm going to bed. I have a busy day tomorrow. I've discovered it's much easier being at the lodge and visiting Jim while the nurses take care of him. I'm too tired to tell my funny story, but it involves an enema bag, a shut of valve that wouldn't shut off, soapy water spraying all over the place, me dropping cleanser on my rug, and getting enema water on my night time meds. LOL. Anyway, poor Jim. LOL. I don't like the word Su.k. But I su.k as a nurse. Big time. But at least I got Jim to go to the bathroom.
2 funny things this trip. The fill in nurse, who usually works in the children's department who asks Jim. "When's the last time you pottied?" LOL. The other is a sign on an office that read. Department of Redundancy Dept. This had to be a joke, right? However at a government office, hmmmmmm.
Okay, I'm serious now. I'm going to bed. Good night.
Good night.
Here's an example of governmental insanity. They give us 10 needles, gloves, a box of alcohol wipes, a little box to dispose of the needles so I can take them to the hospital to dispose of (I guess in my free time...lol) and they give us 10 bottles of this medicine that I have to inject into Jim. Each bottle costs 1700.00. So, I have 17000.00 dollars worth of meds in my fridge (no milk) and yet, they never gave me a syringe, some water and an orange or whatever to practice on. Now how dumb is that? So, I practice on Jim? And if I make a mistake, um, I don't have 1700.00 to replace it. What if I drop one? Sell one? Tee hee hee. Anybody want to score some neupogin? Anyways, by the time my insurance would approve home nursing, I would probably be proficient in giving shots, huh? Well, it was a thought. Maybe they'll pay for a chauffeur to drive us back and forth. How about a cleaning person? A cook? A banker? Just a nurse for 10 days....Come on Death America. Do something. Okay, well then, just call me Nurse Hatchet. Or is it Ratchet? Poor Jim.
I'm going to bed. I have a busy day tomorrow. I've discovered it's much easier being at the lodge and visiting Jim while the nurses take care of him. I'm too tired to tell my funny story, but it involves an enema bag, a shut of valve that wouldn't shut off, soapy water spraying all over the place, me dropping cleanser on my rug, and getting enema water on my night time meds. LOL. Anyway, poor Jim. LOL. I don't like the word Su.k. But I su.k as a nurse. Big time. But at least I got Jim to go to the bathroom.
2 funny things this trip. The fill in nurse, who usually works in the children's department who asks Jim. "When's the last time you pottied?" LOL. The other is a sign on an office that read. Department of Redundancy Dept. This had to be a joke, right? However at a government office, hmmmmmm.
Okay, I'm serious now. I'm going to bed. Good night.
Good night.
Monday, January 12, 2009
sighs of relief
Hi Everyone:
Well, yesterday, Jim and I had a good day. He got a day pass, and we went got a piece of pizza. TURNS OUT OUR LAST AVDENTURE WAS NOT food poisoning. The NCI was attacked with the flu, which we caught. The docs encouraged us to go out last time, so out we went. This time, it was good to go, as well. We came back to the lodge and took a nap, watched the the Steelers win, and went back to the hopt.
It gave Jim and I a good time to talk, and we've decided that during the STC we will stay with family, as they are very very willing to have us, and I am very very afraid of all that could happen if we didn't. Jim just didn't want to put anyone out, and yet all I could think was....how am I going to move furniture, find a safe place, a place we can afford, what if I get sick, the car breaks down, my dad gets sick, what if Jim gets sick and I can't get him into the car, or he falls or I have to go to PA in an emergency, etc. So, we are going to stay with Bob and Shelley, God Love them...
We will have to stay at a hotel for a few weeks, just to be super close, but as time goes by, we think it will be okay to go a bit further away from the institute.
Our insurance would never approve a Allogenic Stem Cell Transplant (ASCT) And no doctors would do one anyway unless Jim had 3 months of remission, which we know never happened. This transplant costs 500,000.00. Yep, half a million bucks. What a blessing to be able to receive it. So, I wasn't going to complain to Jim about where we stayed. But I feel so much better knowing that he's on board, too.
Okay, well, I'm going over to the hopt. to visit my dear hubs. I just love that guy. It's so nice to see his smile back. Oh my goodness, but it's nice. If Jim continues to do well, we will be able to come home Tuesday or so.
Me
Well, yesterday, Jim and I had a good day. He got a day pass, and we went got a piece of pizza. TURNS OUT OUR LAST AVDENTURE WAS NOT food poisoning. The NCI was attacked with the flu, which we caught. The docs encouraged us to go out last time, so out we went. This time, it was good to go, as well. We came back to the lodge and took a nap, watched the the Steelers win, and went back to the hopt.
It gave Jim and I a good time to talk, and we've decided that during the STC we will stay with family, as they are very very willing to have us, and I am very very afraid of all that could happen if we didn't. Jim just didn't want to put anyone out, and yet all I could think was....how am I going to move furniture, find a safe place, a place we can afford, what if I get sick, the car breaks down, my dad gets sick, what if Jim gets sick and I can't get him into the car, or he falls or I have to go to PA in an emergency, etc. So, we are going to stay with Bob and Shelley, God Love them...
We will have to stay at a hotel for a few weeks, just to be super close, but as time goes by, we think it will be okay to go a bit further away from the institute.
Our insurance would never approve a Allogenic Stem Cell Transplant (ASCT) And no doctors would do one anyway unless Jim had 3 months of remission, which we know never happened. This transplant costs 500,000.00. Yep, half a million bucks. What a blessing to be able to receive it. So, I wasn't going to complain to Jim about where we stayed. But I feel so much better knowing that he's on board, too.
Okay, well, I'm going over to the hopt. to visit my dear hubs. I just love that guy. It's so nice to see his smile back. Oh my goodness, but it's nice. If Jim continues to do well, we will be able to come home Tuesday or so.
Me
Saturday, January 10, 2009
Life is funny
Hi Everyone:
Well, Jim is doing well.
Life sure is funny. Why, you ask? Well, I'll tell you.
Jim's stem cell transplant(SCT) will probably take place some time in early/mid February. He has a 50 percent chance of dying from the STC alone. If he survives that. He has about a 25 percent chance of living 2 years. Meanwhile it takes 1 to 2years to even bounce back from an allogenic SCT. So, statistically the future can look bleak if you want to look at statistics.
For the past 20 some months, life has been one harrowing situation after another. Prior to all of this, if we were laying in bed talking, we dreamed big...building a greenhouse, an addition to the cottage, being missionaries for God, joining the choir (Jim, not me.) Going out west. Snorkeling off Grand Cayman. Going to Israel with Kay Arthur.
Fast Forward those 20 harrowing months, and today, we find ourselves in the hospital. Jim has chemo dripping into his veins. His pain meds are being lowered, as the tumor burden is lessening. We laid on his twin bed, watching a movie, and playing a game on the computer, drinking a coke and eating pretzels, and man, you would have thought we were 2 young lovers on our honeymoon, having just won the lottery, with the sun shining on our faces. And that's exactly how we have been feeling lately. We've decided to dig in and scrape out what we can from whatever is dealt us, and it's amazing how little it can take to feel happy. But then NOTHING is little when it's done in the palms of God's hand. So. Now our big dreams are. Wow, Jim's not getting his STC for another month. That gives me a month of laying in bed with him sharing pretzels, getting all excited for him, if I hear his belly sounds cause then he'll go to the bathroom. LOL.
The little things have become so wonderful. And it's amazing that we can comfortably fit into a twin bed.
Well, Jim is doing well.
Life sure is funny. Why, you ask? Well, I'll tell you.
Jim's stem cell transplant(SCT) will probably take place some time in early/mid February. He has a 50 percent chance of dying from the STC alone. If he survives that. He has about a 25 percent chance of living 2 years. Meanwhile it takes 1 to 2years to even bounce back from an allogenic SCT. So, statistically the future can look bleak if you want to look at statistics.
For the past 20 some months, life has been one harrowing situation after another. Prior to all of this, if we were laying in bed talking, we dreamed big...building a greenhouse, an addition to the cottage, being missionaries for God, joining the choir (Jim, not me.) Going out west. Snorkeling off Grand Cayman. Going to Israel with Kay Arthur.
Fast Forward those 20 harrowing months, and today, we find ourselves in the hospital. Jim has chemo dripping into his veins. His pain meds are being lowered, as the tumor burden is lessening. We laid on his twin bed, watching a movie, and playing a game on the computer, drinking a coke and eating pretzels, and man, you would have thought we were 2 young lovers on our honeymoon, having just won the lottery, with the sun shining on our faces. And that's exactly how we have been feeling lately. We've decided to dig in and scrape out what we can from whatever is dealt us, and it's amazing how little it can take to feel happy. But then NOTHING is little when it's done in the palms of God's hand. So. Now our big dreams are. Wow, Jim's not getting his STC for another month. That gives me a month of laying in bed with him sharing pretzels, getting all excited for him, if I hear his belly sounds cause then he'll go to the bathroom. LOL.
The little things have become so wonderful. And it's amazing that we can comfortably fit into a twin bed.
Pics, Updates, Etc.
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Well, I had added some pics, but they got eraced, so I'll try again. Also, Jim no longer has an address here at the NCI, since we are short term stayers now. Thank you so much for all of your cards.
Jim is doing well. We are so thankful to be getting the kind of care that we are getting. It is such a blessing from God to have another opportunity at life through what they are doing here. We both know the other issues of housing, finances, etc. are minor in comparison to the wonderful opportunity we have here.
This is me and my dad. I sure missed him.
Here's a pic of my sister with my dad. She sure got a lot of him while I was gone.
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This is my dad peeling an orange.
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Here is Jim playing the Ukelele he bought me for Christmas. His fingers are numb, but he's trying. Sounds better than me.
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These are the lemons from our greenhouse. I'm holding the ones from the fridge. Jim said I could have them. It doesn't seem fair
This is the picture that made Leah famous. She's with the Ace of Cakes guy from the Food network. She looks smitten, huh? I'm telling John.
Forest...Forest...
I was supposed to go site seeing, too. But noooooooooo. I had to get the flu.
This is the national Christmas tree. This was me about an hour before I started throwing up. That was my game face.
Me and Leah cooking Christmas dinner at the Lodge
This is the Kitchen at the Lodge
These are some photos of the lodge.
Here's us guys on Christmas at the Hopt.
Friday, January 9, 2009
We're here
Hi Everyone:
We arrived safely. It was a very busy day. Jim's in the hopt. getting his chemo. The tumors have shrunk down to 3 cm. Good, but they need better. Jim will be getting 2 more chemos before the STC. And there will definately be a SCT. This chemo alone won't do it for Jim. We didn't think so either. The statement made, "That this chemo alone could cure the cancer" was made by the doctor who spends no more than 30 seconds with Jim at a time. He did not understand Jim's history. We didn't think that would work anyway, because we know his history, so there was only a slight moment of disappointment.
Jim will need 2 more chemos. And then a week of testing and typing. He will then be accepted into the SCT team if he meets all the criteria (which he should) and then he will get more chemo and then the SCT.
In the meantime, we are kind of on our own. I can stay at the lodge this time. Next time, Jim will get his chemo as an out-patient, which scares the heck out of us. We will have to stay at a hotel for a week. They will not be giving us any money for travel or money for the hotel, because we are not on an official "trial." And then during the typing, we are on our own, too. Hello people.... And....well, it goes on and on, and I won't bore you with details. Just pray for provision for us. We are both very leery and tired.
Bill, I'll be in touch.
We arrived safely. It was a very busy day. Jim's in the hopt. getting his chemo. The tumors have shrunk down to 3 cm. Good, but they need better. Jim will be getting 2 more chemos before the STC. And there will definately be a SCT. This chemo alone won't do it for Jim. We didn't think so either. The statement made, "That this chemo alone could cure the cancer" was made by the doctor who spends no more than 30 seconds with Jim at a time. He did not understand Jim's history. We didn't think that would work anyway, because we know his history, so there was only a slight moment of disappointment.
Jim will need 2 more chemos. And then a week of testing and typing. He will then be accepted into the SCT team if he meets all the criteria (which he should) and then he will get more chemo and then the SCT.
In the meantime, we are kind of on our own. I can stay at the lodge this time. Next time, Jim will get his chemo as an out-patient, which scares the heck out of us. We will have to stay at a hotel for a week. They will not be giving us any money for travel or money for the hotel, because we are not on an official "trial." And then during the typing, we are on our own, too. Hello people.... And....well, it goes on and on, and I won't bore you with details. Just pray for provision for us. We are both very leery and tired.
Bill, I'll be in touch.
Tuesday, January 6, 2009
Getting ready for Maryland
Hi Everyone:
Well, we are getting ready for our trip back to Maryland. We will leave Thursday at 4 a.m. So, tomorrow is a busy day of banking, packing, post office, packing. Poor Mark and Kim. I have worked them to the bone since I came home. Thanks so much for all you give to us.
I want to thank Bill and Wade for being so willing to take Jim to MD for me. Unfortunately we were unable to take them up on the offer because I would have lost the reservation at the Lodge, and with the Inauguration coming up, there is no room at any of the Inns right now. So we couldn't have that happen.
We don't know what awaits us. We believe it's going to be the 3rd round of chemo. Our Stem Cell Transplant (SCT) nurse called us today. She wanted to know when Jim was coming down and what was going on. She wants to start typing blood for Jim and his donor, who is going to be brother Bill, on Monday. She would also like to coordinated this chemo to be his chemo prior to the STC. But it's all Greek to her right now, too. She will call me tomorrow. She talked about postponing Jim's chemo.
If they do that, and do the typing, I don't think we can stay at the lodge, and there are no hotel rooms, so I don't really know what happens. I wouldn't be surprised if we just turn around and head home. Although I don't think Jim could drive for 4.5 hours, spend a day in clinic and then drive home again 4.5 hours. That would about wear him out. So, we'll see.
Herky got my car part in, so now I have new tires, and my power steering cooler is repaired, and oil changed and we're ready to go. Many things fell into place while at home. Also, I ordered new storm doors back in October and paid for them, but then we left and they never got installed. Well, a quick call, and the guy came today and now I have new doors, which will increase the safety of our home while we are gone. So, that was another loose end tied together.
Last night I was in the kitchen and all of a sudden it dawned on me. My husband has cancer. And he could die from this. In fact, he's been on the brink of death 4 times. It was so weird, like I haven't been living the last 20 months. Denial even at this stage. Amazing.
Well, we are getting ready for our trip back to Maryland. We will leave Thursday at 4 a.m. So, tomorrow is a busy day of banking, packing, post office, packing. Poor Mark and Kim. I have worked them to the bone since I came home. Thanks so much for all you give to us.
I want to thank Bill and Wade for being so willing to take Jim to MD for me. Unfortunately we were unable to take them up on the offer because I would have lost the reservation at the Lodge, and with the Inauguration coming up, there is no room at any of the Inns right now. So we couldn't have that happen.
We don't know what awaits us. We believe it's going to be the 3rd round of chemo. Our Stem Cell Transplant (SCT) nurse called us today. She wanted to know when Jim was coming down and what was going on. She wants to start typing blood for Jim and his donor, who is going to be brother Bill, on Monday. She would also like to coordinated this chemo to be his chemo prior to the STC. But it's all Greek to her right now, too. She will call me tomorrow. She talked about postponing Jim's chemo.
If they do that, and do the typing, I don't think we can stay at the lodge, and there are no hotel rooms, so I don't really know what happens. I wouldn't be surprised if we just turn around and head home. Although I don't think Jim could drive for 4.5 hours, spend a day in clinic and then drive home again 4.5 hours. That would about wear him out. So, we'll see.
Herky got my car part in, so now I have new tires, and my power steering cooler is repaired, and oil changed and we're ready to go. Many things fell into place while at home. Also, I ordered new storm doors back in October and paid for them, but then we left and they never got installed. Well, a quick call, and the guy came today and now I have new doors, which will increase the safety of our home while we are gone. So, that was another loose end tied together.
Last night I was in the kitchen and all of a sudden it dawned on me. My husband has cancer. And he could die from this. In fact, he's been on the brink of death 4 times. It was so weird, like I haven't been living the last 20 months. Denial even at this stage. Amazing.
Monday, January 5, 2009
Tires
Well, John is going to come home and get the tires on the van and such for me, so all is working out.
I DON'T KNOW WHO YOU ARE and JUDY WON'T TELL ME but you sure were generous to Jim and I. I could get by on the tires that I have for a few more months, but the traffic is so bad down there, and so many wrecks when it rains, and I slid once while on the 6 lane highway (shhhh, don't tell Jim) so not only are you (whoever you are...JUDY WON'T TELL ME) buying us tires, but you're potentially saving our lives too. Thank you.
You know. I have to say this. I was talking to the Lord the other day. It was after my spiritual temper tantrum day. I said, "Lord, I don't get it. All the problems, not just day to day, but sometimes hour by hour...day after day. It seems like you just don't care. No. I can't say that. It seems like you are aloof. And yet, all your people, their generosity, care, concern and love have been SOOOOOOOO GREAT. Why? I don't feel like I deserve it. Jim, yes. Me, no."
Now, I don't always feel that way, but many times. And I can recognize the evil one behind the evil thoughts. That doesn't trip me up. But it seems like God is loving me in ways that I don't need. No...wait. Not that. Cause we have needed the help we have received. Maybe this is better. It seems like God is loving me, but not in the way that I desire the most. Yes. I have greatly...GREATLY appreciated EVERYTHING that all of you guys have done for me. But the one thing I desire the most. The one thing I want the most feels like the one thing that I'm just not getting. And that is more of HIM. I just want more of God. And he seems so aloof. Oh, I know the cute little churchianity sayings like, "If you don't feel God's presense, He's not the one that has moved" and other sayings. But I don't believe that is what is happening here. I think that God has lifted his spirit of connectivity (for lack of a better word) from me, as part of this trial that I walk with Jim, so that his purpose is not thwarted, and I continue to grow in Him. But while doing that, he has drawn you guys to step in and love us, so that we aren't totally left alone adrift. I probably wouldn't have survived without you. Anxiety or something would have eaten me up.
It scares me to think of the long hard road that we have to walk yet, so we really don't go there often. But I have to say, one thing that has changed is that I see I need more of God, my savior, my friend, more than I need anything. And yet it seems like there is nothing that I can do to make his power, his presence manifest in my life. So I just sit and wait for Him to come. Come Lord Jesus. And he tells his bridegroom to wait a little longer, and as I wait, he sends a wedding party, you, to be his arms and legs and mouth and smiles, and you wash our feet, and I would be EMPTY without you all.
I DON'T KNOW WHO YOU ARE and JUDY WON'T TELL ME but you sure were generous to Jim and I. I could get by on the tires that I have for a few more months, but the traffic is so bad down there, and so many wrecks when it rains, and I slid once while on the 6 lane highway (shhhh, don't tell Jim) so not only are you (whoever you are...JUDY WON'T TELL ME) buying us tires, but you're potentially saving our lives too. Thank you.
You know. I have to say this. I was talking to the Lord the other day. It was after my spiritual temper tantrum day. I said, "Lord, I don't get it. All the problems, not just day to day, but sometimes hour by hour...day after day. It seems like you just don't care. No. I can't say that. It seems like you are aloof. And yet, all your people, their generosity, care, concern and love have been SOOOOOOOO GREAT. Why? I don't feel like I deserve it. Jim, yes. Me, no."
Now, I don't always feel that way, but many times. And I can recognize the evil one behind the evil thoughts. That doesn't trip me up. But it seems like God is loving me in ways that I don't need. No...wait. Not that. Cause we have needed the help we have received. Maybe this is better. It seems like God is loving me, but not in the way that I desire the most. Yes. I have greatly...GREATLY appreciated EVERYTHING that all of you guys have done for me. But the one thing I desire the most. The one thing I want the most feels like the one thing that I'm just not getting. And that is more of HIM. I just want more of God. And he seems so aloof. Oh, I know the cute little churchianity sayings like, "If you don't feel God's presense, He's not the one that has moved" and other sayings. But I don't believe that is what is happening here. I think that God has lifted his spirit of connectivity (for lack of a better word) from me, as part of this trial that I walk with Jim, so that his purpose is not thwarted, and I continue to grow in Him. But while doing that, he has drawn you guys to step in and love us, so that we aren't totally left alone adrift. I probably wouldn't have survived without you. Anxiety or something would have eaten me up.
It scares me to think of the long hard road that we have to walk yet, so we really don't go there often. But I have to say, one thing that has changed is that I see I need more of God, my savior, my friend, more than I need anything. And yet it seems like there is nothing that I can do to make his power, his presence manifest in my life. So I just sit and wait for Him to come. Come Lord Jesus. And he tells his bridegroom to wait a little longer, and as I wait, he sends a wedding party, you, to be his arms and legs and mouth and smiles, and you wash our feet, and I would be EMPTY without you all.
Home Sweet Home 2
Hi Everyone:
Jim is home safe and sound. He's glad to be home for a few days.
MaryJo, it was so nice to see you last night (you too, Joe, of course). You're such a sweetheart and an encourager. You looked so pretty last night. You were like a breath of fresh air.
PS...you want another sister? I can lend you one for a while. She cooks good. ;)
Well, my dear son was willing to come in today to help, but it's so hard to say, "yeah, drive 4 hours, and then when he gets here, I'm so scattered brain, I'm all confused as to what he could, should do. So, I don't know John. I still need tires, and have no plans yet on getting them. I better get off the computer and get to work.
Hope everyone has a wonderful, safe, spirit filled week.
Us
Jim is home safe and sound. He's glad to be home for a few days.
MaryJo, it was so nice to see you last night (you too, Joe, of course). You're such a sweetheart and an encourager. You looked so pretty last night. You were like a breath of fresh air.
PS...you want another sister? I can lend you one for a while. She cooks good. ;)
Well, my dear son was willing to come in today to help, but it's so hard to say, "yeah, drive 4 hours, and then when he gets here, I'm so scattered brain, I'm all confused as to what he could, should do. So, I don't know John. I still need tires, and have no plans yet on getting them. I better get off the computer and get to work.
Hope everyone has a wonderful, safe, spirit filled week.
Us
Sunday, January 4, 2009
Don't Visit
Hi All:
Visiting hours are over. Jim is coming home. Temp is down, and he's not neutropenic any more, so, he can come home. End result is I got a lot of things done, and Jim is okay. That's good. I just felt bad that Jim had to be away from home.
Visiting hours are over. Jim is coming home. Temp is down, and he's not neutropenic any more, so, he can come home. End result is I got a lot of things done, and Jim is okay. That's good. I just felt bad that Jim had to be away from home.
Saturday, January 3, 2009
Sorry for the confusion
Hi Everyone:
I'm sorry for the confusion. I was in a hurry to leave and see my father who I haven't seen in months that I left a quick message.
Okay. We came home from Bethesda MD to be...at home. And then Jim's temp spiked up to 102.5. Because he was neutropenic, I had to take him to the Emergency Room last night. And of course, they admitted him. He had to received IV antibiotics, and he also needed 2 units of blood. We were very disappointed at the outcome of leaving a hopt. in MD to have to go into another hospital here. And I wanted to tell people and let them know if they wanted to see them, they would have to do it there, but I guess I messed that up. And I wanted to convey that while we are also frustrated by the constant everyday snafu's, we are resting in God's love. We don't understand it, but that's okay.
Well, I saw my dad, and boy did he look good. I sure missed him. Poor thing. The only thing worse in my life than my husband's cancer is my dad's Altzheimer's. But he looked good and that felt good to my soul. My sister has done a WONDERFUL job taking care of him in my absence.
Jim's temp is gone now, and he's doing well, but this hasn't been quite the respite for him. My poor poor dear. And his temperment CONTINUES to be one of peace, trust, and letting go. God's spirit is at work in our lives, that's for sure.
K, people. Thanks for your prayers and your visiting. Jim has one offer for a ride to Bethesda. I'm not sure if I can take the gentleman up on the offer yet since Jim is sick, and I may need to be there because of the temp thing, but we shall see. One thing good is that with Jim in the hopt. I don't have to nurse him and I am able to get many things done that I otherwise wouldn't have been able too. Poor Jim, tho.
Ok. TTUL
US
I'm sorry for the confusion. I was in a hurry to leave and see my father who I haven't seen in months that I left a quick message.
Okay. We came home from Bethesda MD to be...at home. And then Jim's temp spiked up to 102.5. Because he was neutropenic, I had to take him to the Emergency Room last night. And of course, they admitted him. He had to received IV antibiotics, and he also needed 2 units of blood. We were very disappointed at the outcome of leaving a hopt. in MD to have to go into another hospital here. And I wanted to tell people and let them know if they wanted to see them, they would have to do it there, but I guess I messed that up. And I wanted to convey that while we are also frustrated by the constant everyday snafu's, we are resting in God's love. We don't understand it, but that's okay.
Well, I saw my dad, and boy did he look good. I sure missed him. Poor thing. The only thing worse in my life than my husband's cancer is my dad's Altzheimer's. But he looked good and that felt good to my soul. My sister has done a WONDERFUL job taking care of him in my absence.
Jim's temp is gone now, and he's doing well, but this hasn't been quite the respite for him. My poor poor dear. And his temperment CONTINUES to be one of peace, trust, and letting go. God's spirit is at work in our lives, that's for sure.
K, people. Thanks for your prayers and your visiting. Jim has one offer for a ride to Bethesda. I'm not sure if I can take the gentleman up on the offer yet since Jim is sick, and I may need to be there because of the temp thing, but we shall see. One thing good is that with Jim in the hopt. I don't have to nurse him and I am able to get many things done that I otherwise wouldn't have been able too. Poor Jim, tho.
Ok. TTUL
US
VISITING JIM
ALL ARE WELCOMED TO VISIT JIM. He's at Passavant Hopt. 6th floor. Go visit. Don't ask. We're good. We didn't want to leave the hopt. to go to the hopt. but it is what it is. GO VISIT. I'm going to do another 1000 things today. God is good to make this okay in our hearts. Thank you Jesus.
Friday, January 2, 2009
2009
Hi Everyone:
Jim is doing well. Cancer well. The chemo has brought on more mouth sores, and he's very very tired. It's nice to see him in our bed though sleeping. He goes to the doc tomorrow. We leave on Wednesday to go back to Bethesda. Is anyone heading that way on a trip? Close to that way? I could really use to stay home 3 or 4 more days and get some work done. I have to get the van repaired, the truck inspected, tires for the van. I would love to visit my dad, see a friend, and go to my doctors, things like that. I know the chances are slim, but it's worth mentioning. John is coming home to take the van to get tires and repaired. Pray there is an opening. And pray that I can get into the doctors by Monday. hmmmm.
So, what does this new year mean? Let's see.
If you follow Notradomus, some premillenialists, Mayans, Incas, and probably a few others out there, it's 3 years until the end of the world or the rapture.
So, when I say "have a blessed new year" with that in mind, the new house, car, vacation, face lift, addition, promotion, cleaning the walls, getting that raise, losing 20 pounds, getting your masters degree, hoping that your spouse learns how to communicate, etc. etc. etc. doesn't seem to be of that much value. (I will take that vacation off your hands though if you would like. Face lift, too. This nursing stuff has me looking haggard)
So then I started thinking about this at 12:50 on New Years Day and realized I have absolutely nothing to say and am searching for something to say about New Years, and I'm thinking stupid things.
Happy New Years seems so trite. Blessed New Year...well what does that mean? To some it's the christiany way of saying "Happy New Year" as many believe that to be truly blessed you are happy here on earth. Even I fall into the trap of thinking people who have it easier are more blessed. I know they aren't, but...like I said, I'm grasping for words.
Oh, I know. When I click on the link to my blog it takes me to my opening page. And I see these words every time.
"Jim's Jubilant Journey. I named it this because even though Jim has cancer, we still have great joy, we are rejoicing, are exultant and will triumph....come what may. WILL SOMEONE TELL ME WHO SLIPPED THE HAPPY PILLS INTO MY COFFEE THAT DAY? AND WHERE CAN I BUY SOME? I'm just kidding, but it sure does sound gross. But I realized there is still truth in there. Come what may...
Oh, and if I've spoken to you on the phone...PLEASE FORGIVE ME FOR RAMBLING. I ramble ramble ramble. I have never spoke so little in my life these past 19 months, and if you catch me in the mood, I can't seem to shut up. Even here.
Okay. Good night. I'm tired now.
PS. I was thinking. I'll take that 20 pound weight loss from you too. And more communication from the hubby...even a sick one. 3 more years is a long time to talk to yourself...geeze. A
Jim is doing well. Cancer well. The chemo has brought on more mouth sores, and he's very very tired. It's nice to see him in our bed though sleeping. He goes to the doc tomorrow. We leave on Wednesday to go back to Bethesda. Is anyone heading that way on a trip? Close to that way? I could really use to stay home 3 or 4 more days and get some work done. I have to get the van repaired, the truck inspected, tires for the van. I would love to visit my dad, see a friend, and go to my doctors, things like that. I know the chances are slim, but it's worth mentioning. John is coming home to take the van to get tires and repaired. Pray there is an opening. And pray that I can get into the doctors by Monday. hmmmm.
So, what does this new year mean? Let's see.
If you follow Notradomus, some premillenialists, Mayans, Incas, and probably a few others out there, it's 3 years until the end of the world or the rapture.
So, when I say "have a blessed new year" with that in mind, the new house, car, vacation, face lift, addition, promotion, cleaning the walls, getting that raise, losing 20 pounds, getting your masters degree, hoping that your spouse learns how to communicate, etc. etc. etc. doesn't seem to be of that much value. (I will take that vacation off your hands though if you would like. Face lift, too. This nursing stuff has me looking haggard)
So then I started thinking about this at 12:50 on New Years Day and realized I have absolutely nothing to say and am searching for something to say about New Years, and I'm thinking stupid things.
Happy New Years seems so trite. Blessed New Year...well what does that mean? To some it's the christiany way of saying "Happy New Year" as many believe that to be truly blessed you are happy here on earth. Even I fall into the trap of thinking people who have it easier are more blessed. I know they aren't, but...like I said, I'm grasping for words.
Oh, I know. When I click on the link to my blog it takes me to my opening page. And I see these words every time.
"Jim's Jubilant Journey. I named it this because even though Jim has cancer, we still have great joy, we are rejoicing, are exultant and will triumph....come what may. WILL SOMEONE TELL ME WHO SLIPPED THE HAPPY PILLS INTO MY COFFEE THAT DAY? AND WHERE CAN I BUY SOME? I'm just kidding, but it sure does sound gross. But I realized there is still truth in there. Come what may...
Oh, and if I've spoken to you on the phone...PLEASE FORGIVE ME FOR RAMBLING. I ramble ramble ramble. I have never spoke so little in my life these past 19 months, and if you catch me in the mood, I can't seem to shut up. Even here.
Okay. Good night. I'm tired now.
PS. I was thinking. I'll take that 20 pound weight loss from you too. And more communication from the hubby...even a sick one. 3 more years is a long time to talk to yourself...geeze. A
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