Well, I'm pooped, but I'm inching along. Jim, too.
But today I did something huge. HUGE. Back in October, I was planning Jim's funeral. Today I threw all of that info away.
It's a good day for us both. Except we're pooped.
Saturday, May 30, 2009
Friday, May 29, 2009
Up for Grabs...lol
Could be your lucky day, or your mom or dad's. I have about 8 pints of Lactulose and 2 pints of milk of magnesia that we don't need. They've never been opened, and the lactulose can be expensive to buy, so if you or anyone you know needs it, it's here. I'm tossing it out by Sunday.
Wednesday, May 27, 2009
Tuesday, May 26, 2009
Fiddler on the Roof
If you know me, you know I love the movie/musical Fiddler on the Roof.
Today I feel like Tevye when his horse goes lame and he asks God, "Now, was that necessary so close to the Sabbath?" I too, was so close to a rest.
Or perhaps this quote is apropos.
"I know we are the chosen people, but once in a while, can't you chose someone else."
It is 7:20, and Jim just started to get his second unit of blood. There were all kinds of missteps, snafu's, etc. The port wouldn't work. They had to retype Jim's blood because since the stem cell transplant, he might not be the same type. Bob's type is "normal" out there, but in here it's type A minor with a D trend...or some weird thing. Then Jim's blood kept clotting. And they ordered more blood tests. And the nurse forgot to answer a page...
I had 2 hours of sleep last night. My ankles are swollen and killing me, and if I get out of here at 10:00 p.m. I'll consider myself blessed.
So, I ask, God, was this necessary? I asked Him and am resting in knowing that "yeah, obviously so." And I try to see him as so kind and gentle and loving rather than seeing Him smiting me or laughing at my expense pushing pushing pushing me until...what? I succeeded in believing the voice of truth, that He is kind and gentle and loving. I succeeded in resting in that truth today better than I ever have in my life, "...for power is perfected in weakness" I guess. (His power, not mine)
However I wonder if perhaps God isn't wanting me home rather than Jim. Seriously. I feel dead.
How am I so filled with Him and love for Him and desire for Him and yet feel so empty, so very empty? I guess that's why I asked, "Now, God, was that necessary...
Today I feel like Tevye when his horse goes lame and he asks God, "Now, was that necessary so close to the Sabbath?" I too, was so close to a rest.
Or perhaps this quote is apropos.
"I know we are the chosen people, but once in a while, can't you chose someone else."
It is 7:20, and Jim just started to get his second unit of blood. There were all kinds of missteps, snafu's, etc. The port wouldn't work. They had to retype Jim's blood because since the stem cell transplant, he might not be the same type. Bob's type is "normal" out there, but in here it's type A minor with a D trend...or some weird thing. Then Jim's blood kept clotting. And they ordered more blood tests. And the nurse forgot to answer a page...
I had 2 hours of sleep last night. My ankles are swollen and killing me, and if I get out of here at 10:00 p.m. I'll consider myself blessed.
So, I ask, God, was this necessary? I asked Him and am resting in knowing that "yeah, obviously so." And I try to see him as so kind and gentle and loving rather than seeing Him smiting me or laughing at my expense pushing pushing pushing me until...what? I succeeded in believing the voice of truth, that He is kind and gentle and loving. I succeeded in resting in that truth today better than I ever have in my life, "...for power is perfected in weakness" I guess. (His power, not mine)
However I wonder if perhaps God isn't wanting me home rather than Jim. Seriously. I feel dead.
How am I so filled with Him and love for Him and desire for Him and yet feel so empty, so very empty? I guess that's why I asked, "Now, God, was that necessary...
OH BOY!!!!!!!!!
Well, it was a good start when we left Bob and Shelley's this morning. I couldn't sleep at all last night. But around 3, Mr. Sandman showed up. Before I knew it, it was 5 a.m. and time to go. Last minute shoving of stuff into a van filled to the gills. Shelley had her normal wonderful spread of juice, fresh fruit, etc. A few laughs, a few tears (we'll be back in 2 weeks) and we're off. First song I heard was...FINALLY MAKE IT HOME. LOL. And I thought about that first verse of wrapping my arms around my dad and tell him that I missed him, and I cried because I can't wait until I can see my dear dad.
AND THEN.... Buckets of rain. Almost 3 hours in traffic. Long lines here at the clinic. Check out papers messed up. But Jim's finally in a room, and his numbers are back, and I about puked.
His white blood cells...tanked.
neutrophils.....tanked. He's neutropenic again. Shots again...
His plateles.....tanked. Down to 29.
AND His red blood cells....tanked. So, right now, he's waiting on a blood transfusion. He hasn't needed red blood since before the transplant. (I think it was before the transplant.) Docs, don't know why. BUT, he has a new rash on his feet. It looks like petinkee (sp) eye, but the fact that he's losing blood has them looking into some internal bleeding possibilities???? His spleen being enlarge to 18 cm is being looked at, too.
His temp of 100 last night is causing them to take another round of blood tests, AND...
IF THEY THINK I'M UNPACKING THIS VAN, THEY'RE NUTS. So, pray hard people. I'm not sure if anyone is even reading much anymore. I haven't checked history or anything. I know there are a few out there, but I hope there's a lot more silent readers, and if so, please pray. This is certainly unnerving.
Despite all of that, I do believe they will still release Jim today. We will probably get the honorable discharge right at traffic time again.
Well, I'm in the business center here, so I better go.
Oh, just for laughs, let me tell you about our little "memorial day" treat that we went on, while B&S and fam. went picnicking with some friends. Jim and I decided to drive to the bay. "And just in case" (you know Jim) let's bring the crabbing stuff. It was a nice drive. We decided to go to Point Lookout Statepark, at the Bay. After the hour drive, the road ends at the entrance to the park...where you have to pay 5.00 per person to get in. WHAT????? And, it takes you right to a booth, with no way of getting out of it, unless you go through it and say you changed your mind. So Jim gets his wallet out (I'm driving) and gives me the money to pay. We pull through the booth and drive about 300 yards, not even enough time to get speed up, and a police officer pulls us over because Jim doesn't have his seatbelt on. (NICE TRAP MARYLAND) Wasn't so "merry." If they knew how slow Jim was, they would know it takes a while for him. And it's not like I'm staying around to appeal it... Anyway. We got a ticket. But we had to wait 40 mins for the cop to get all of Jim's history. So, we finally are able to proceed, and there's nothing to do there. We drive to the point, and you can't get out and park and walk on a beach or anything. All there is is barbwire around a lighthouse that is more like a bungalow with a bic lighter on top. Not the traditional lighthouse. So, we headed back out of the park. Wow. One the way back, there was an inlet with boat rental. At the boat rental place, we were able to go on a dock in and we tried our hand at crabbing, but it's been so cold in "merryland" that the crabs still aren't in. We did enjoy sitting on the dock though. I put my feet in the water, and Jim sat on his walker seat. (he did lose his feeting upon standing and I thought he was going in.) So, that was our memorial day. No what though. It was GLORIOUS. That's how hungry for anything we are.
If I wasn't a child of the King though, I would think we had a target on our heads that said, "get me." Of course, being a child of the King, there is that invisable target that the enemy....well... you know.
So, I sure hope it's truly our last day here and we are coming home. But my plans for stopping at Mineo's on the way home....tanked.
Gloria
AND THEN.... Buckets of rain. Almost 3 hours in traffic. Long lines here at the clinic. Check out papers messed up. But Jim's finally in a room, and his numbers are back, and I about puked.
His white blood cells...tanked.
neutrophils.....tanked. He's neutropenic again. Shots again...
His plateles.....tanked. Down to 29.
AND His red blood cells....tanked. So, right now, he's waiting on a blood transfusion. He hasn't needed red blood since before the transplant. (I think it was before the transplant.) Docs, don't know why. BUT, he has a new rash on his feet. It looks like petinkee (sp) eye, but the fact that he's losing blood has them looking into some internal bleeding possibilities???? His spleen being enlarge to 18 cm is being looked at, too.
His temp of 100 last night is causing them to take another round of blood tests, AND...
IF THEY THINK I'M UNPACKING THIS VAN, THEY'RE NUTS. So, pray hard people. I'm not sure if anyone is even reading much anymore. I haven't checked history or anything. I know there are a few out there, but I hope there's a lot more silent readers, and if so, please pray. This is certainly unnerving.
Despite all of that, I do believe they will still release Jim today. We will probably get the honorable discharge right at traffic time again.
Well, I'm in the business center here, so I better go.
Oh, just for laughs, let me tell you about our little "memorial day" treat that we went on, while B&S and fam. went picnicking with some friends. Jim and I decided to drive to the bay. "And just in case" (you know Jim) let's bring the crabbing stuff. It was a nice drive. We decided to go to Point Lookout Statepark, at the Bay. After the hour drive, the road ends at the entrance to the park...where you have to pay 5.00 per person to get in. WHAT????? And, it takes you right to a booth, with no way of getting out of it, unless you go through it and say you changed your mind. So Jim gets his wallet out (I'm driving) and gives me the money to pay. We pull through the booth and drive about 300 yards, not even enough time to get speed up, and a police officer pulls us over because Jim doesn't have his seatbelt on. (NICE TRAP MARYLAND) Wasn't so "merry." If they knew how slow Jim was, they would know it takes a while for him. And it's not like I'm staying around to appeal it... Anyway. We got a ticket. But we had to wait 40 mins for the cop to get all of Jim's history. So, we finally are able to proceed, and there's nothing to do there. We drive to the point, and you can't get out and park and walk on a beach or anything. All there is is barbwire around a lighthouse that is more like a bungalow with a bic lighter on top. Not the traditional lighthouse. So, we headed back out of the park. Wow. One the way back, there was an inlet with boat rental. At the boat rental place, we were able to go on a dock in and we tried our hand at crabbing, but it's been so cold in "merryland" that the crabs still aren't in. We did enjoy sitting on the dock though. I put my feet in the water, and Jim sat on his walker seat. (he did lose his feeting upon standing and I thought he was going in.) So, that was our memorial day. No what though. It was GLORIOUS. That's how hungry for anything we are.
If I wasn't a child of the King though, I would think we had a target on our heads that said, "get me." Of course, being a child of the King, there is that invisable target that the enemy....well... you know.
So, I sure hope it's truly our last day here and we are coming home. But my plans for stopping at Mineo's on the way home....tanked.
Gloria
Monday, May 25, 2009
last day in Maryland
So, we took the kids to Rita's, and now we're packing. Well, I'm packing. Jim is looking covetously at the computer.
WE'RE COMING HOME.
WE'RE COMING HOME.
Saturday, May 23, 2009
FINALLY HOME - a taste of heaven
There is a wonderful christian radio station down here that plays all types of popular christian music, and I am loving that..as I sit in traffic hour after hour after hour. Anyway, there is a song by Mercy Me called "Finally Home." And I love this song. But one particular morning I listened to the lyrics and it dawned on me that I never thought of heaven as my home. I've called it home, have wanted to go there, and it's my source of hope, but this particular morning I had a taste of heaven as my home. It may have only been a molecules worth on my taste bud, but it was delightful.
I want to go home soooooooooooooo bad. I'm getting excited like a kid at a candy store. And this morning when I heard those words, I thought about not heaven, but Pittsburgh, and the yearning and hearts tugs and desire for home...there was just such a longing. AND IN THAT MOMENT GOD GAVE ME A TASTE OF DESIRE FOR MY HEAVENLY HOME. If I'm this excited to go home to Pittsburgh with my goofy neighbors, brick house that needs repointing with tumbling chimneys, gravel driveway, all I could imagine is how great it will be to go FINALLY HOME to be with Jesus my new neighbor, and my my bros and sis' who are made perfect, and not gravel driveways, but streets paved of Gold, and not brick homes that need help, but mansions.
:) Anyway after Rancy Alcorn's book about heaven, and then desiring home (my home here) so badly, and now "feeling" that heaven is my home, man....I really got it made in the shade. Life is good.
Anyway, just thinking.
3 more days.
I want to go home soooooooooooooo bad. I'm getting excited like a kid at a candy store. And this morning when I heard those words, I thought about not heaven, but Pittsburgh, and the yearning and hearts tugs and desire for home...there was just such a longing. AND IN THAT MOMENT GOD GAVE ME A TASTE OF DESIRE FOR MY HEAVENLY HOME. If I'm this excited to go home to Pittsburgh with my goofy neighbors, brick house that needs repointing with tumbling chimneys, gravel driveway, all I could imagine is how great it will be to go FINALLY HOME to be with Jesus my new neighbor, and my my bros and sis' who are made perfect, and not gravel driveways, but streets paved of Gold, and not brick homes that need help, but mansions.
:) Anyway after Rancy Alcorn's book about heaven, and then desiring home (my home here) so badly, and now "feeling" that heaven is my home, man....I really got it made in the shade. Life is good.
Anyway, just thinking.
3 more days.
Friday, May 22, 2009
getting ready for steak
Well, the prime rib is almost done, (no wonder I'm fat) but I wanted to post and just say how very lovely it is to know that Jim is still cancer free and that we are coming home soon. I can't tell you how badly I want to come home. It's killing me. But what's a few more days.
The doctor said. Well, the immune system is keeping Jim's cancer away. And I asked him.
"Doctor, are you saying that whatever mutation happened in Jim's body is still happening, and that the new immune system is killing it? And the doctor said, "That's probably what is going on, yes." (I don't know why I thought a new immune system meant that his lymph nodes would no longer mutate.) Anyway, I said, well, isn't that what happens in bodies, and he said, yes it is. We have mutations all the time going on in our body, and our immune systems rid our bodies of them and when they don't, that's when something is going on. So, then I thought. However, Jim's cancer was in remission before the SCT, so isn't that better? That means the mutations stopped...or at least paused. But when I thought pause, I thought "Oh NO." What if they start and the new...so I wasn't sure what to be afraid of or not. Then I thought. I know. I won't be afraid of nothing. So, I"m not right now. And I'm feeling good. And the steak is ready. BYEEEEEEEEE
The doctor said. Well, the immune system is keeping Jim's cancer away. And I asked him.
"Doctor, are you saying that whatever mutation happened in Jim's body is still happening, and that the new immune system is killing it? And the doctor said, "That's probably what is going on, yes." (I don't know why I thought a new immune system meant that his lymph nodes would no longer mutate.) Anyway, I said, well, isn't that what happens in bodies, and he said, yes it is. We have mutations all the time going on in our body, and our immune systems rid our bodies of them and when they don't, that's when something is going on. So, then I thought. However, Jim's cancer was in remission before the SCT, so isn't that better? That means the mutations stopped...or at least paused. But when I thought pause, I thought "Oh NO." What if they start and the new...so I wasn't sure what to be afraid of or not. Then I thought. I know. I won't be afraid of nothing. So, I"m not right now. And I'm feeling good. And the steak is ready. BYEEEEEEEEE
Thursday, May 21, 2009
DRUM ROLL......................
:-p~~~~~~~~~~~~~~~~~~~
BLAH
We can't come home. That's the bad news.
The good news is JIM'S PET SCAN IS 100 PERCENT PERFECT WITH NOT A TOUCH OF DISEASE ANYWHERE. wAHOO, YipPEE. ( wood bE DANCinG BuY my FeeTS is KIlLiNG ME.) I guess that would be considered "great news" huh?
Bob, the doctor said, that's one good strong immune system, so....
They say that the blood #'s changing so much is normal...but they want to test Jim's blood on Tuesday before they release him.....Makes no sense to me. So, here's the real reason. PAPER WORK. They're terrible with it. So, we'll be home Tuesday.
So very tired. We woke up at 4:30 a.m and got home at 7:30 p.m. Just finished eating dinner, and I'm going to bed.
Us
BLAH
We can't come home. That's the bad news.
The good news is JIM'S PET SCAN IS 100 PERCENT PERFECT WITH NOT A TOUCH OF DISEASE ANYWHERE. wAHOO, YipPEE. ( wood bE DANCinG BuY my FeeTS is KIlLiNG ME.) I guess that would be considered "great news" huh?
Bob, the doctor said, that's one good strong immune system, so....
They say that the blood #'s changing so much is normal...but they want to test Jim's blood on Tuesday before they release him.....Makes no sense to me. So, here's the real reason. PAPER WORK. They're terrible with it. So, we'll be home Tuesday.
So very tired. We woke up at 4:30 a.m and got home at 7:30 p.m. Just finished eating dinner, and I'm going to bed.
Us
At the NIH
Well, I'm at the NIH still. We're waiting for Jim's last test, and then back up to the doc office to see the result of the PET scan....
This is painful...
This is painful...
Wednesday, May 20, 2009
I forgot ...
Yesterday morn, Jim was bit in the buttocks in bed and scratched off a bug. It wasn't imbedded, so it couldn't have been a tick (despite the kids having them all the time) I squashed it, and blood came out. So, was it a bedbug? Well, I almost died at the thought. There is a softbodied tick, but I can't seem to find out if they are in this region. I took apart the bed....again... and see no evidence of bedbugs, plus they just don't match pics on the web. So I have this little sucker under the microscope, but we're thinking tick. Now, I'm not sure if they can test a dead bug under a microscope for lymes disease or not. But the thought of Lymes disease or bed bugs was enough to make me curl up in a ball and fade away. I know you don't get Lymes disease just because you're bit...it's been something that I have worried about since I've been here. Their dog is loaded with them and they are pulling them off the kids all the time. I know what to look for, but it just feels like the slightest extra thing will just send me over the edge sometimes.
Also, allergies down here are horrible. I have never had bad outdoor allergies. Well, I can't breathe, they are so bad. I can't use my breathing machine, so I'm not sleeping well. This morning, my eye were almost closed shut they are so puffy. Shelley and I walked at 6:00 and it was in the low 40's, so the cold air helped them and they just oozed and oozed, but being out doors makes them worse, so they are starting to puff up again. It's the freakiest thing I've ever seen. I was crying in bed last night, my eyes hurt so bad and "I just wanna go home."
Jessie called and she's coming down tonight to have dinner with us tonight and then to take home as much stuff of ours that will fit into her car. That's a much needed blessing I hadn't gotten any takers on that, and so thrilled to have our stuff come home and to be able to clear out Bob and Shelley's house. We're taken the kids playroom too long. Anyway, then I got a message on my phone that my best friend on the east coast (that's for your Rach... ;) ) and her husband came down my house and rototilled my garden and brought me some mater and pepper plants and put them in the greenhouse, and Karen washed my table and chairs and pulled some weeds, and someone was there cutting the grass from our church again, and Mark was up there doing something, as he's always doing, and sister will buy some groceries so I don't have to run to the store and.....well you get the point. I get a card in a mail or a gift in the mail and.... Anyway, I just kind of uncurled from my ball of pity as I saw how good God has been to us again through his people. I think you have saved my life while I was trying to save Jim's.
However, I'm still packing. It's kind of like that scene in an airplane, where the oxygen masks fall from the ceiling and they tell you to put them on yourself before your child or someone sick so that you can help them. Going home, routine and order is my oxygen mask. I don't have much more to give.
Oh, and for some of you wondering and such, the mold problem has been taken care of. Mark moved everything out of the basement and Bill and Joey went over and worked on that. My sister says that the house has never smelled so good, and Bill and Joey do believe that the new roof they installed last year has taken care of the water problem. So... Things are looking up.
ok, well I'm rambling again because...probably because these past 2.5 years have had enough drama to just...well, make me nuts. I wonder if you can get post traumatic stress disorder. LOL.
Tomorrow's the big day.......
Also, allergies down here are horrible. I have never had bad outdoor allergies. Well, I can't breathe, they are so bad. I can't use my breathing machine, so I'm not sleeping well. This morning, my eye were almost closed shut they are so puffy. Shelley and I walked at 6:00 and it was in the low 40's, so the cold air helped them and they just oozed and oozed, but being out doors makes them worse, so they are starting to puff up again. It's the freakiest thing I've ever seen. I was crying in bed last night, my eyes hurt so bad and "I just wanna go home."
Jessie called and she's coming down tonight to have dinner with us tonight and then to take home as much stuff of ours that will fit into her car. That's a much needed blessing I hadn't gotten any takers on that, and so thrilled to have our stuff come home and to be able to clear out Bob and Shelley's house. We're taken the kids playroom too long. Anyway, then I got a message on my phone that my best friend on the east coast (that's for your Rach... ;) ) and her husband came down my house and rototilled my garden and brought me some mater and pepper plants and put them in the greenhouse, and Karen washed my table and chairs and pulled some weeds, and someone was there cutting the grass from our church again, and Mark was up there doing something, as he's always doing, and sister will buy some groceries so I don't have to run to the store and.....well you get the point. I get a card in a mail or a gift in the mail and.... Anyway, I just kind of uncurled from my ball of pity as I saw how good God has been to us again through his people. I think you have saved my life while I was trying to save Jim's.
However, I'm still packing. It's kind of like that scene in an airplane, where the oxygen masks fall from the ceiling and they tell you to put them on yourself before your child or someone sick so that you can help them. Going home, routine and order is my oxygen mask. I don't have much more to give.
Oh, and for some of you wondering and such, the mold problem has been taken care of. Mark moved everything out of the basement and Bill and Joey went over and worked on that. My sister says that the house has never smelled so good, and Bill and Joey do believe that the new roof they installed last year has taken care of the water problem. So... Things are looking up.
ok, well I'm rambling again because...probably because these past 2.5 years have had enough drama to just...well, make me nuts. I wonder if you can get post traumatic stress disorder. LOL.
Tomorrow's the big day.......
Tuesday, May 19, 2009
quickly...it'll take another miracle
Well, it'll be a miracle if we make it home this week. But I haven't stopped packing.
Jim's blood TANKED... He's neutropenic again. Really low. His neutrophil was .600. Normal is 2000. to 8000. So, I'm back to giving him shots daily. And his platelets have tanked, too. His are 28,000. Normal is 164,000 to 360,000. YIKES... Because of that, his nose won't stop bleeding, and the site of his bone marrow biopsy opened tonight, too, because of him pulling the darn tape. It's not running bad, so maybe that one will stop. His creatinine (kidney) numbers are up too.
You know why all of this is happening? Well, neither do they. But I'm packing.
G
Jim's blood TANKED... He's neutropenic again. Really low. His neutrophil was .600. Normal is 2000. to 8000. So, I'm back to giving him shots daily. And his platelets have tanked, too. His are 28,000. Normal is 164,000 to 360,000. YIKES... Because of that, his nose won't stop bleeding, and the site of his bone marrow biopsy opened tonight, too, because of him pulling the darn tape. It's not running bad, so maybe that one will stop. His creatinine (kidney) numbers are up too.
You know why all of this is happening? Well, neither do they. But I'm packing.
G
Monday, May 18, 2009
At the NIH
Hello Everyone.
First, I want to mention that I responded to your response in my last post, so go read them if you wrote something.
I am at the NIH right now. Jim is getting his bone marrow biopsy and a few other things. I will not miss the 2 to 3 hour drive every morning twice a week, once we leave here. I talked to MJ yesterday though and she didn't know this, so I thought I would just tell you guys here. Once we leave, we will have to come back to the NIH every week, probably for a month. Then we will go to once every 2 weeks for I think 3 months, and then to once a month, and then to once every 3 months....on down, for the next 5 years. Now, I'm not complaining, particuarly at the possibility of the 5 years later scenerio, but when we come down here for clinic every Thursday, if they order special procedures or tests, we will have to stay at a hotel for a night or two, so in many ways, I think it will still be stressful, so keep up the prayers.
Yesterday, Jim felt a slight bit better with the neuropathy in his hands, which was really good for him. So, we hope there's more of that to come. Walking is still very difficult for him, and if he dials the phone, just that tapping pressure feels like someone is taking razor blades to his finger. When he puts his feet in the cotton ball bin, it feels like he's sticking them in a bin of needles.
I heard either on the radio today that some great man of God (forget his name) made this statement. All Christians find themselves in one of 3 places in their life.
...going into a storm
...coming out of a storm
...or in the middle of a storm
So, quickly I thought, I would rather be coming out of a storm....but once I gave an extra minute to the thought, (after my life passed before my eyes) I was back at that same old place....rapture, judgment day...whatever end times flavor you subscribe to, come on down....
All 3 of those places really stink if you think about it. I mean, who wants to go into a storm. And who wants to be in one. And coming out of the storm means you just were in one and are getting ready for another...
Geeze. I do believe there is a break in between the coming out of the storm and entering into a storm phase. I hope there is... QUICK, SOMEONE TELL ME THERE IS.
What I haven't decided is this: Have I ever exited the storm. What I wonder is, have you?
Does fitting a quick vacation in somewhere every 4 years count as a break? How about a weekend up the cottage? Or let's take it down to the simplest of terms. Is having a toddler make you laugh, or seeing a new bird for the life list, or....________ (name yours) count as that break? I don't really know. I'm glad for those things, but they sure are fleeting. But they aren't as fleeting for some people as they are for others, and to be honest, I thought I was over that, but I still find myself getting a bit ticked once in a while.
I know I shared with you that once I prayed, "God, don't ever make my life so easy that I don't need you desperately." Bob (family we're staying with) says it's all my fault for praying that. He said, "What were you thinking." Now, I wonder.... ;)
Jim prayed that same prayer pretty much about 2.5 years ago. He added the following: "even if it means you have to take my life." Had I known, I would have stopped him. LOL. (this is all tongue in cheek, you know. Even if there were no heaven, we would still bow down to God because He's worthy of it) But you know, there is that kidding on the square type of thing going on. I still would have prayed it, but maybe I wouldn't have used the word "desperately." Maybe I would have used a softer adverb. (that is an adverb, isn't it?) Anywho. BUT WHERE WAS I WHEN JIM PRAYED THAT. What was he thinking? DOESN'T HE KNOW THAT WE ARE ONE. I didn't pray "death." But I got it by default. NOT FAIR. I thought my prayer was noble enough. And why did he wait so long to tell me about that. If he would have only told me, I would have had you all praying sooner...like the day after.
But seriously. I didn't pray that out of my own strength. That was the Holy Spirit that had me pray that, so I am not saying that proudly like, "Oh, Gloria, the mature Christian is such a Holy woman"... you only have to know me and hear me hold down a quick cuss word at something as simple as a stubbing of the toe...but I wonder if I would have said yes to the Holy Spirit's prompting to pray that, if I had only known that God would take me up on it.
Anyway. I've heard the saying, watch what you pray for. Hmmmm.
Well, Jim might be done soon, so I better shut up and go back up there.
Again, we won't know until Thursday whether we can come home or not. What's weird is that I am SO READY TO COME HOME. And yet I'M TERRIFIED TO COME HOME. Mary Joe, you got that so right last night. I'm glad you are involved in women's ministry. You are such a wise counselor.
As many of you are. I'm not singularly picking her out. All of you have offered me such needed offerings. Your gifts are all needed. In my bible study, I saw how often Paul wrote that his joy in the Lord was found in his christian brothers and sisters. I can honestly say I don't know how I would have made it without all of you and your love for the Lord and for using your gifts to hold me up. You have been my source of joy.
I just wanted again to say thanks in case my next blog post says nothing but "Coming Home." I just know I couldn't have made it these 6 months with you.
We love you all.
US
(Karen, my phone was dead and today I forgot it. The DVD was awesome. And thanks for the Tiara. Reminds me of a few years ago when we did Captivating.) Oh, how we forgot. But I like the twist she gave, about maybe, just maybe, the glimpse of our life in the Kingdom can be tasted through the childlike play of a princess and a knight.)
Is that Beth Moore something or what? I gotta tell you though. I'm a bit jealous of her. LOL. Isn't that funny. Nothing like repenting of jealousy of your teacher in the middle of a bible study. I wanna be Beth Moore when I grow up. :)
First, I want to mention that I responded to your response in my last post, so go read them if you wrote something.
I am at the NIH right now. Jim is getting his bone marrow biopsy and a few other things. I will not miss the 2 to 3 hour drive every morning twice a week, once we leave here. I talked to MJ yesterday though and she didn't know this, so I thought I would just tell you guys here. Once we leave, we will have to come back to the NIH every week, probably for a month. Then we will go to once every 2 weeks for I think 3 months, and then to once a month, and then to once every 3 months....on down, for the next 5 years. Now, I'm not complaining, particuarly at the possibility of the 5 years later scenerio, but when we come down here for clinic every Thursday, if they order special procedures or tests, we will have to stay at a hotel for a night or two, so in many ways, I think it will still be stressful, so keep up the prayers.
Yesterday, Jim felt a slight bit better with the neuropathy in his hands, which was really good for him. So, we hope there's more of that to come. Walking is still very difficult for him, and if he dials the phone, just that tapping pressure feels like someone is taking razor blades to his finger. When he puts his feet in the cotton ball bin, it feels like he's sticking them in a bin of needles.
I heard either on the radio today that some great man of God (forget his name) made this statement. All Christians find themselves in one of 3 places in their life.
...going into a storm
...coming out of a storm
...or in the middle of a storm
So, quickly I thought, I would rather be coming out of a storm....but once I gave an extra minute to the thought, (after my life passed before my eyes) I was back at that same old place....rapture, judgment day...whatever end times flavor you subscribe to, come on down....
All 3 of those places really stink if you think about it. I mean, who wants to go into a storm. And who wants to be in one. And coming out of the storm means you just were in one and are getting ready for another...
Geeze. I do believe there is a break in between the coming out of the storm and entering into a storm phase. I hope there is... QUICK, SOMEONE TELL ME THERE IS.
What I haven't decided is this: Have I ever exited the storm. What I wonder is, have you?
Does fitting a quick vacation in somewhere every 4 years count as a break? How about a weekend up the cottage? Or let's take it down to the simplest of terms. Is having a toddler make you laugh, or seeing a new bird for the life list, or....________ (name yours) count as that break? I don't really know. I'm glad for those things, but they sure are fleeting. But they aren't as fleeting for some people as they are for others, and to be honest, I thought I was over that, but I still find myself getting a bit ticked once in a while.
I know I shared with you that once I prayed, "God, don't ever make my life so easy that I don't need you desperately." Bob (family we're staying with) says it's all my fault for praying that. He said, "What were you thinking." Now, I wonder.... ;)
Jim prayed that same prayer pretty much about 2.5 years ago. He added the following: "even if it means you have to take my life." Had I known, I would have stopped him. LOL. (this is all tongue in cheek, you know. Even if there were no heaven, we would still bow down to God because He's worthy of it) But you know, there is that kidding on the square type of thing going on. I still would have prayed it, but maybe I wouldn't have used the word "desperately." Maybe I would have used a softer adverb. (that is an adverb, isn't it?) Anywho. BUT WHERE WAS I WHEN JIM PRAYED THAT. What was he thinking? DOESN'T HE KNOW THAT WE ARE ONE. I didn't pray "death." But I got it by default. NOT FAIR. I thought my prayer was noble enough. And why did he wait so long to tell me about that. If he would have only told me, I would have had you all praying sooner...like the day after.
But seriously. I didn't pray that out of my own strength. That was the Holy Spirit that had me pray that, so I am not saying that proudly like, "Oh, Gloria, the mature Christian is such a Holy woman"... you only have to know me and hear me hold down a quick cuss word at something as simple as a stubbing of the toe...but I wonder if I would have said yes to the Holy Spirit's prompting to pray that, if I had only known that God would take me up on it.
Anyway. I've heard the saying, watch what you pray for. Hmmmm.
Well, Jim might be done soon, so I better shut up and go back up there.
Again, we won't know until Thursday whether we can come home or not. What's weird is that I am SO READY TO COME HOME. And yet I'M TERRIFIED TO COME HOME. Mary Joe, you got that so right last night. I'm glad you are involved in women's ministry. You are such a wise counselor.
As many of you are. I'm not singularly picking her out. All of you have offered me such needed offerings. Your gifts are all needed. In my bible study, I saw how often Paul wrote that his joy in the Lord was found in his christian brothers and sisters. I can honestly say I don't know how I would have made it without all of you and your love for the Lord and for using your gifts to hold me up. You have been my source of joy.
I just wanted again to say thanks in case my next blog post says nothing but "Coming Home." I just know I couldn't have made it these 6 months with you.
We love you all.
US
(Karen, my phone was dead and today I forgot it. The DVD was awesome. And thanks for the Tiara. Reminds me of a few years ago when we did Captivating.) Oh, how we forgot. But I like the twist she gave, about maybe, just maybe, the glimpse of our life in the Kingdom can be tasted through the childlike play of a princess and a knight.)
Is that Beth Moore something or what? I gotta tell you though. I'm a bit jealous of her. LOL. Isn't that funny. Nothing like repenting of jealousy of your teacher in the middle of a bible study. I wanna be Beth Moore when I grow up. :)
Tuesday, May 12, 2009
Doing a bit better...HELP WANTED, TOO
Hi Everyone:
I'm doing a bit better, so thanks for the prayers. There is soooooooo much going on in my head and so many things that God is doing in me. It's beautiful...It's beautifully painful...how about that. My desire is that I come home and it slows down, but God has not told me that. So, I'm learning about being exhausted in today without thinking of tomorrow's exhaustion. :) But I find that much has been stripped of me during these 2 years. I could go on and on and on. Yesterday I discovered that...well, you know what. I'll talk of that another time. I'm really just too worn out to go into it or do it justice. And what the heck. Who wants to talk about the ugliness of total depravity when the sun it out. And yes the sun is out.
BUT...Jim had to go up on pain meds because the neuropathy is just killiing me, and now he can't go to the bathroom for days, and we're back to THAT place. So we are not out enjoying the sun. However, I did get to drive to the drug store for an enema. But we're terrified to use it because of the seton history, so...
Update:::::::::
Next Monday, May 18th, Jim will have his final BONE MARROW BIOPSY of this trial. Thank you Jesus. He has demanded that he be put to sleep for it. He, too, just can't bear too much more pain of this journey. Anywho, then on Thursday May 21st, Jim will have an echo cardiogram, some other tests, and his FINAL PET SCAN of this trial. This is the BIG ONE. Will there or won't there be any residual cancer cells... The doc said there is a small chance that we will be able to get the answer to the test results that Thursday. And the nurse said that we could still come into the day hopt. and clinic the following Monday and Thursday, if we wanted, unless we really wanted to go home. HELLO....... Nooooooooooooo, we'll hang out for an extra week.....What are they nuts?
Anyway, if all things are well, we may actually be heading home on the 23rd or so of May. I NEVER in 100 years would have thought it was possibly considering Jim's condition, even 2 weeks ago. Now, if the PET scan shows there is cancer...well, I don't know what that is about, but I'm coming home anyway. I NEED TO COME HOME. We'll work on plan B then. I don't know what plan B is, and I'm not planning on plan B, but I'm coming home one way or another, and very soon. So, I'm figuring Jim's PET scan is just going to be clean. Besides, it's not like Jim's cancer hangs around growing slowly or something. We would know in a big way in a very short time, so.
It's still scary though. Jim had a temp the other night of 100. He has slight temps every night. Could be the GVHD. We know from the last CT scan, that it wasn't any swollen LN's indicating cancer, but the PET scan will be more thorough. Also, Jim's white blood cell count is still low, but climbing. NO MORE SHOTS of neupogen, which is really great for us both, but his platelets are NOT bouncing back. The docs say that his bone marrow might have just been too damaged from all the chemo and may never come back fully, so...let's just not go there.
Anyway, it's a bit scary to come home. Not in the "not trusting God" way, but in the "I may not be coming home to go to the gym, the cottage, and work in the garden, kind of way.
I don't want to see anyone for 1 month when I come home. I have put 20 pounds on since November. I guess that isn't too bad considering I had been sitting on my butt eating vending food machine for almost 5 months, but still. I'm fatter and I HATE IT. I'll see you all after a month of dieting and the gym...unless you want to come and clean...then you're welcome. ;) Aha, there won't be too many takers for that one. And I can't blame you. Actually, I will love cleaning my house and such. I bet mopping my kit and bath floors will be WONDERFUL...for the first week, anyway.
Someone had offered to turn over my gardens. I can't remember who, but GO TO IT. I have a rototiller in the shed and a shovel. Or you can wait until I come home. But you can't look at my fatness. ;)
But here's my real need and what I need help with. If anyone is passing through MD, close to Washington DC or Mechanicsville or within an hour drive's of 20659 within the next week, this is particularly put out there because maybe someone at your church or my church is on a business trip or something. Anyway, if there is, and you or they would be willing to bring some of our stuff home, that would save me 2 trips, or having to throw good stuff away, or leaving it behind to clutter Bob and Shelley's house up, etc. It's not the end of the world if it doesn't happen, but if it could and it's easy, give us a call. I can meet you whereever you are at. But you can't look at me. :)
Okay, I'm going now.
Pray that Jim can go Numero Dos.
I'm doing a bit better, so thanks for the prayers. There is soooooooo much going on in my head and so many things that God is doing in me. It's beautiful...It's beautifully painful...how about that. My desire is that I come home and it slows down, but God has not told me that. So, I'm learning about being exhausted in today without thinking of tomorrow's exhaustion. :) But I find that much has been stripped of me during these 2 years. I could go on and on and on. Yesterday I discovered that...well, you know what. I'll talk of that another time. I'm really just too worn out to go into it or do it justice. And what the heck. Who wants to talk about the ugliness of total depravity when the sun it out. And yes the sun is out.
BUT...Jim had to go up on pain meds because the neuropathy is just killiing me, and now he can't go to the bathroom for days, and we're back to THAT place. So we are not out enjoying the sun. However, I did get to drive to the drug store for an enema. But we're terrified to use it because of the seton history, so...
Update:::::::::
Next Monday, May 18th, Jim will have his final BONE MARROW BIOPSY of this trial. Thank you Jesus. He has demanded that he be put to sleep for it. He, too, just can't bear too much more pain of this journey. Anywho, then on Thursday May 21st, Jim will have an echo cardiogram, some other tests, and his FINAL PET SCAN of this trial. This is the BIG ONE. Will there or won't there be any residual cancer cells... The doc said there is a small chance that we will be able to get the answer to the test results that Thursday. And the nurse said that we could still come into the day hopt. and clinic the following Monday and Thursday, if we wanted, unless we really wanted to go home. HELLO....... Nooooooooooooo, we'll hang out for an extra week.....What are they nuts?
Anyway, if all things are well, we may actually be heading home on the 23rd or so of May. I NEVER in 100 years would have thought it was possibly considering Jim's condition, even 2 weeks ago. Now, if the PET scan shows there is cancer...well, I don't know what that is about, but I'm coming home anyway. I NEED TO COME HOME. We'll work on plan B then. I don't know what plan B is, and I'm not planning on plan B, but I'm coming home one way or another, and very soon. So, I'm figuring Jim's PET scan is just going to be clean. Besides, it's not like Jim's cancer hangs around growing slowly or something. We would know in a big way in a very short time, so.
It's still scary though. Jim had a temp the other night of 100. He has slight temps every night. Could be the GVHD. We know from the last CT scan, that it wasn't any swollen LN's indicating cancer, but the PET scan will be more thorough. Also, Jim's white blood cell count is still low, but climbing. NO MORE SHOTS of neupogen, which is really great for us both, but his platelets are NOT bouncing back. The docs say that his bone marrow might have just been too damaged from all the chemo and may never come back fully, so...let's just not go there.
Anyway, it's a bit scary to come home. Not in the "not trusting God" way, but in the "I may not be coming home to go to the gym, the cottage, and work in the garden, kind of way.
I don't want to see anyone for 1 month when I come home. I have put 20 pounds on since November. I guess that isn't too bad considering I had been sitting on my butt eating vending food machine for almost 5 months, but still. I'm fatter and I HATE IT. I'll see you all after a month of dieting and the gym...unless you want to come and clean...then you're welcome. ;) Aha, there won't be too many takers for that one. And I can't blame you. Actually, I will love cleaning my house and such. I bet mopping my kit and bath floors will be WONDERFUL...for the first week, anyway.
Someone had offered to turn over my gardens. I can't remember who, but GO TO IT. I have a rototiller in the shed and a shovel. Or you can wait until I come home. But you can't look at my fatness. ;)
But here's my real need and what I need help with. If anyone is passing through MD, close to Washington DC or Mechanicsville or within an hour drive's of 20659 within the next week, this is particularly put out there because maybe someone at your church or my church is on a business trip or something. Anyway, if there is, and you or they would be willing to bring some of our stuff home, that would save me 2 trips, or having to throw good stuff away, or leaving it behind to clutter Bob and Shelley's house up, etc. It's not the end of the world if it doesn't happen, but if it could and it's easy, give us a call. I can meet you whereever you are at. But you can't look at me. :)
Okay, I'm going now.
Pray that Jim can go Numero Dos.
Friday, May 8, 2009
Fighting
It makes no sense to me at all. Life is still very hard. Some stuff hard, some stuff silly. Like my windshield wipers are broken, and I drove in the pouring rain turning them on and off, barely seeing out the window, while I was on the phone fighting with my insurance DEATH AMERICA so that I could have a perscription filled, which they wouldn't do, and now the windshield is scratched, and I still have no meds or windshield that works and blah blah blah blah....but this kind of stuff is my normal life. Big time, Jim is still cancer free. He has no GVHD in his eyes as feared. His GVHD is just there enough to make a good transplant, but not bad enough to make him real sick. We may actuallhy be able to come home in 2 weeks, and yet I'm closer and closer to sliding down that slippery slope towards depression.
I'm sooooooooooo very homesick...and yet...I'm terrified of coming home, of the work. I'm worn out. I am plum WORN OUT. I don't want to blog, do e-mail. Forget Facebook. I don't want to see anyone. I don't want to talk on the phone. Etc. Etc.
I would think I would be celebrating. Instead I'm fighting off depression. It doesn't help that it has done nothing but rain for....I would say with the exception of 3 days, the whole time I've been here. And it's been grayer than Pittsburgh...if that's possible. I've also felt the loss of intimacy and such with other women in my life, as I am now on my 6th month of being away from home. And yet now, I don't even want to talk to anyone really. I could go on and on. You get my point...maybe.
Jim is doing okay. He's still in lots of pain with the neuropathy. This causes him to be down. He talks of grand things, and yet can barely walk. It's all so very sad. He's had to go up in pain pills. This helps him feel better, but it's the opposite of "normal life" and to me it's the promise of more of what we've had. I can't even go on. So if you're reading this, please pray for me. I feel like giving up, and yet don't even know what that means.
I guess I dream of blue water and white sand on a small island, and no one else on it, but me.
Last night I had a headache and it woke me up. I woke up and saw shadows on the ceiling and walls. I said to Jim. Stop making those shadows. (I could have been dreaming) He said he wasn't, and I thought I was having a visual migraine. Jim gave me some aspirin and then he started praying for me. It really felt like for a second my spiritual glasses were on and I could see spiritual warfare going on. What were those shadows...hmmmm. I immediately started to feel better and went back to sleep. But as the day goes on, I find myself fighting again. So, please cover me in prayer. Cover us.
I'm sooooooooooo very homesick...and yet...I'm terrified of coming home, of the work. I'm worn out. I am plum WORN OUT. I don't want to blog, do e-mail. Forget Facebook. I don't want to see anyone. I don't want to talk on the phone. Etc. Etc.
I would think I would be celebrating. Instead I'm fighting off depression. It doesn't help that it has done nothing but rain for....I would say with the exception of 3 days, the whole time I've been here. And it's been grayer than Pittsburgh...if that's possible. I've also felt the loss of intimacy and such with other women in my life, as I am now on my 6th month of being away from home. And yet now, I don't even want to talk to anyone really. I could go on and on. You get my point...maybe.
Jim is doing okay. He's still in lots of pain with the neuropathy. This causes him to be down. He talks of grand things, and yet can barely walk. It's all so very sad. He's had to go up in pain pills. This helps him feel better, but it's the opposite of "normal life" and to me it's the promise of more of what we've had. I can't even go on. So if you're reading this, please pray for me. I feel like giving up, and yet don't even know what that means.
I guess I dream of blue water and white sand on a small island, and no one else on it, but me.
Last night I had a headache and it woke me up. I woke up and saw shadows on the ceiling and walls. I said to Jim. Stop making those shadows. (I could have been dreaming) He said he wasn't, and I thought I was having a visual migraine. Jim gave me some aspirin and then he started praying for me. It really felt like for a second my spiritual glasses were on and I could see spiritual warfare going on. What were those shadows...hmmmm. I immediately started to feel better and went back to sleep. But as the day goes on, I find myself fighting again. So, please cover me in prayer. Cover us.
Saturday, May 2, 2009
Update
Hi Everyone:
Jim is doing pretty well. His rib is healing. He continues to get stronger. He's eating better. And how about this. AFTER MORE THAN A YEAR, he's driving again. Kinda scary to me, but really great for him.
I talked to the doctors about the transplant and the 100 percent and the B-cell and T-cell stuff. I didn't really expect to get too much information out of them but at least I did get this. They said that they have a bit more success rate with T-cell cancers (which is what Jim's is) than the B cell cancers. So, while the cancer could come back tomorrow, next month, next year or never, at least I got something reassuring out of the docs.
Gotta run. The kids are becking at the door.
Jim is doing pretty well. His rib is healing. He continues to get stronger. He's eating better. And how about this. AFTER MORE THAN A YEAR, he's driving again. Kinda scary to me, but really great for him.
I talked to the doctors about the transplant and the 100 percent and the B-cell and T-cell stuff. I didn't really expect to get too much information out of them but at least I did get this. They said that they have a bit more success rate with T-cell cancers (which is what Jim's is) than the B cell cancers. So, while the cancer could come back tomorrow, next month, next year or never, at least I got something reassuring out of the docs.
Gotta run. The kids are becking at the door.
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