Well nothing really is new lately so I haven't posted anything! Sorry! :-(
On January 2nd he will go in for another blood draw. On January 5th the VA wants him to go to the crappy place and get his cathater put in. We shall see. I need to call some places to see where else we can go!
We did get his work insurance so that will help! Now that we have them and TriCare maybe it will all still be paid for and no out of pocket costs and he can get cared for by nice drs!
We are in the process of moving too, which doesn't help! I've been trying to keep James out of the cold, but with these temps it's kind of hard! LOL Hopefully he doesn't get sick anytime soon!!! That's it for now. Hopefully I'll know more soon!
Monday, December 22, 2008
Friday, December 5, 2008
What a great appt!
So now onto today's appt. I thought I'd break it up so it didn't get too long! ;-) I tend to get long winded sometimes, so I appologize in advance! :-)
So I got to the VA today around 2:15. I first went in and talked to the nurse. She said that she was wrong and they no longer want to do the infusiport, and they want to use a Hickman Port. A Hickman port basically looks like a chicken foot, I guess you could say! It has 3 ports that go into one that then gets infused through the chest and into the heart. They now want to do that appt. on Friday, but James doesn't want to. He is afraid that once they put the port in that he will no longer be able to have a choice. I totally understand and support his decision.
Then we went in and talked to Dr. Stone. Did I mention Dr. Stone is wonderful?? He said he completely understood. He said that he suggests I just show up at the one VA and walk around and see what I think. If I want him to that all I have to do is call him and he'll come up and show me around too. He also understand how I didn't like how Dr. Jerkwad treated us.
He said he didn't know why Dr. Jerkwad wouldn't answer my questions. He also agreed that we do have choices and were free to explore them. He also gave us some ideas on treatment too. ;-) I totally liked the ideas and might be going forth that way. James and I need to talk more about it. He explained that with the treatment that each dr might think they are right/best etc and only afterward would we know.
He also agreed that Nashville only sent us to the one because it was close, not that it was the best. Can I again say this was a great appt! ;-) So now we have options and we will work on exhausting those until we run out of time/find the best/etc!
We also were told that if James develops a fever that we need to get to the hospital. If it's really high to go to the closest, if it's not too high but still a fever then we can wait to get to the VA. So that is the latest! I will update when we lock some more things in. Dr. Stone believes that we can wait a bit if we want, although its a good idea to get treatment sooner than later but we are ok! :-) I feel so much better today and hope to continue getting things figured out! Thanks again everyone!
So I got to the VA today around 2:15. I first went in and talked to the nurse. She said that she was wrong and they no longer want to do the infusiport, and they want to use a Hickman Port. A Hickman port basically looks like a chicken foot, I guess you could say! It has 3 ports that go into one that then gets infused through the chest and into the heart. They now want to do that appt. on Friday, but James doesn't want to. He is afraid that once they put the port in that he will no longer be able to have a choice. I totally understand and support his decision.
Then we went in and talked to Dr. Stone. Did I mention Dr. Stone is wonderful?? He said he completely understood. He said that he suggests I just show up at the one VA and walk around and see what I think. If I want him to that all I have to do is call him and he'll come up and show me around too. He also understand how I didn't like how Dr. Jerkwad treated us.
He said he didn't know why Dr. Jerkwad wouldn't answer my questions. He also agreed that we do have choices and were free to explore them. He also gave us some ideas on treatment too. ;-) I totally liked the ideas and might be going forth that way. James and I need to talk more about it. He explained that with the treatment that each dr might think they are right/best etc and only afterward would we know.
He also agreed that Nashville only sent us to the one because it was close, not that it was the best. Can I again say this was a great appt! ;-) So now we have options and we will work on exhausting those until we run out of time/find the best/etc!
We also were told that if James develops a fever that we need to get to the hospital. If it's really high to go to the closest, if it's not too high but still a fever then we can wait to get to the VA. So that is the latest! I will update when we lock some more things in. Dr. Stone believes that we can wait a bit if we want, although its a good idea to get treatment sooner than later but we are ok! :-) I feel so much better today and hope to continue getting things figured out! Thanks again everyone!
What a great appt!
So now onto today's appt. I thought I'd break it up so it didn't get too long! ;-) I tend to get long winded sometimes, so I appologize in advance! :-)
So I got to the VA today around 2:15. I first went in and talked to the nurse. She said that she was wrong and they no longer want to do the infusiport, and they want to use a Hickman Port. A Hickman port basically looks like a chicken foot, I guess you could say! It has 3 ports that go into one that then gets infused through the chest and into the heart. They now want to do that appt. on Friday, but James doesn't want to. He is afraid that once they put the port in that he will no longer be able to have a choice. I totally understand and support his decision.
Then we went in and talked to Dr. Stone. Did I mention Dr. Stone is wonderful?? He said he completely understood. He said that he suggests I just show up at the one VA and walk around and see what I think. If I want him to that all I have to do is call him and he'll come up and show me around too. He also understand how I didn't like how Dr. Jerkwad treated us.
He said he didn't know why Dr. Jerkwad wouldn't answer my questions. He also agreed that we do have choices and were free to explore them. He also gave us some ideas on treatment too. ;-) I totally liked the ideas and might be going forth that way. James and I need to talk more about it. He explained that with the treatment that each dr might think they are right/best etc and only afterward would we know.
He also agreed that Nashville only sent us to the one because it was close, not that it was the best. Can I again say this was a great appt! ;-) So now we have options and we will work on exhausting those until we run out of time/find the best/etc!
We also were told that if James develops a fever that we need to get to the hospital. If it's really high to go to the closest, if it's not too high but still a fever then we can wait to get to the VA. So that is the latest! I will update when we lock some more things in. Dr. Stone believes that we can wait a bit if we want, although its a good idea to get treatment sooner than later but we are ok! :-) I feel so much better today and hope to continue getting things figured out! Thanks again everyone!
So I got to the VA today around 2:15. I first went in and talked to the nurse. She said that she was wrong and they no longer want to do the infusiport, and they want to use a Hickman Port. A Hickman port basically looks like a chicken foot, I guess you could say! It has 3 ports that go into one that then gets infused through the chest and into the heart. They now want to do that appt. on Friday, but James doesn't want to. He is afraid that once they put the port in that he will no longer be able to have a choice. I totally understand and support his decision.
Then we went in and talked to Dr. Stone. Did I mention Dr. Stone is wonderful?? He said he completely understood. He said that he suggests I just show up at the one VA and walk around and see what I think. If I want him to that all I have to do is call him and he'll come up and show me around too. He also understand how I didn't like how Dr. Jerkwad treated us.
He said he didn't know why Dr. Jerkwad wouldn't answer my questions. He also agreed that we do have choices and were free to explore them. He also gave us some ideas on treatment too. ;-) I totally liked the ideas and might be going forth that way. James and I need to talk more about it. He explained that with the treatment that each dr might think they are right/best etc and only afterward would we know.
He also agreed that Nashville only sent us to the one because it was close, not that it was the best. Can I again say this was a great appt! ;-) So now we have options and we will work on exhausting those until we run out of time/find the best/etc!
We also were told that if James develops a fever that we need to get to the hospital. If it's really high to go to the closest, if it's not too high but still a fever then we can wait to get to the VA. So that is the latest! I will update when we lock some more things in. Dr. Stone believes that we can wait a bit if we want, although its a good idea to get treatment sooner than later but we are ok! :-) I feel so much better today and hope to continue getting things figured out! Thanks again everyone!
Wednesday's Appt.
Well, Today was MUCH better! Let me back track for just a second! :-)
On Wednesday we went back to the VA that we had been going to so the TB skin test could be read, the last blood alcohol/drug test, and to talk to the nurse about the day before's irritating appointments and to talk to the shrink to clear him for transplant!
The shrink appt was first. We got in to talk with him and he was nice. He also forwarned us that since James has PTSD that the drugs used for Chemo can cause irritability, anxiety, etc and that we should tell the drs so they can watch for it and us too so we can get it taken care of if it happens. Thanks Dr. S2. He was kind and treated us well!
Then we went to main building to oncology and the nurse appologized for how bad they were. She said she used to work with Dr. Jerkwad and that he can come off strong. She said I need to tell him to answer my questions and to soften up. She said that he will go to bat for you and truly cares, but can come off harsh (that's fine, but seriously.. don't like the dude!).
She also showed us the infusiport that they originally had talked about putting in. She explained it and said they wanted to put it in on Monday. She did all the tests and we discussed things further. She said that they'd work at getting us other places. They said they called TriCare (our insurance currently) and that they would only pay 80% and that would cost us 20% of 250,000!!! Ouch! So we are trying to see about James' new employer's work coverage will cover and then TriCare too. We shall see.
We talked about seeing if we could transfer centers or what. She then said I could come back Friday and talk to Dr. Stone about everything. She said that James didn't have to be with me either. She said just to come by late Friday afternoon. So I went in today to talk and see what Dr. Stone has to say since I trust him and get his opinion! :-)
On Wednesday we went back to the VA that we had been going to so the TB skin test could be read, the last blood alcohol/drug test, and to talk to the nurse about the day before's irritating appointments and to talk to the shrink to clear him for transplant!
The shrink appt was first. We got in to talk with him and he was nice. He also forwarned us that since James has PTSD that the drugs used for Chemo can cause irritability, anxiety, etc and that we should tell the drs so they can watch for it and us too so we can get it taken care of if it happens. Thanks Dr. S2. He was kind and treated us well!
Then we went to main building to oncology and the nurse appologized for how bad they were. She said she used to work with Dr. Jerkwad and that he can come off strong. She said I need to tell him to answer my questions and to soften up. She said that he will go to bat for you and truly cares, but can come off harsh (that's fine, but seriously.. don't like the dude!).
She also showed us the infusiport that they originally had talked about putting in. She explained it and said they wanted to put it in on Monday. She did all the tests and we discussed things further. She said that they'd work at getting us other places. They said they called TriCare (our insurance currently) and that they would only pay 80% and that would cost us 20% of 250,000!!! Ouch! So we are trying to see about James' new employer's work coverage will cover and then TriCare too. We shall see.
We talked about seeing if we could transfer centers or what. She then said I could come back Friday and talk to Dr. Stone about everything. She said that James didn't have to be with me either. She said just to come by late Friday afternoon. So I went in today to talk and see what Dr. Stone has to say since I trust him and get his opinion! :-)
Tuesday, December 2, 2008
I dislike arrogant Drs! UGH!
So today we had our two appointments. The first was at the VA in KC. We get there and it's in the ghetto! Not a great neighborhood at all! We get there and get where we are supposed to go. The lady at the desk wanted us to do the lab we are scheduled for tomorrow, and I said NO! We will get that at our normal VA since we were only supposed to be at KC for an evaluation.
The reason for the evaluation was that when the Nashville center received James' blood for the HLA typing, they felt like (since James' blood levels are low although since he is strong and otherwise healthy he's not as critical as his blood work might indicate) he should begin treatment ASAP. Because of that Dr. Stone asked Dr. Kamhambpati (or something like that) to evaluate James and see if he concurred.
So we finally get to a room at close to noon (our appt is at 11:20!). The room is jankity! Where there should have been a vent was plastic held to the wall with duct tape! I think the room decor is older than me! They weren't doing a remodel either! Outside the window there was a hole in the wall too! My oh my!! Finally Dr. Patel comes in to chat.
He says that we will first do Chemo. I said wait a minute! We were told we were waiting until we got to the transplant center to start anything since they aren't sure which type of Leukemia James has. He said well you are going to the Nashville treatment center. Umm no, we told our Dr that we want to go to the Fred Hutchinson Center in Seattle (since we were given a choice that's what we picked!). He says that he was going to page Dr. Stone since he didn't know about that.
Finally Dr. K comes in. First thing he says after he introduces himself is "First let me correct some things". He says that we don't get to choose where we go and that the central office picks. If we were in the the NW then we'd get Seattle (not the Fred Hutch), if we are in Midwest either San Antonio or Nashville. He said he'd tell Central office James doesn't want Nashville, but we'll see. He said that he have to start treatment there and that he will treat it like ALL because it's more complex treatment and rare in Adults.
I said but you all don't know which one he has so that's why were were supposed to wait until we see a specialist! He said that Nashville wouldn't have sent us there if it weren't the best. (Umm we're in KS and that's the closest to us that does chemo, so yeah that's really the reason they sent us there jerkwad!)! Then he said that James would be only the 3rd person he's treated with ALL. I asked what his success rates were and he said that was the wrong question to ask. Umm, you want to treat my husband but won't tell me how successful you are! IGIT! He won't treat James as AML because he thinks he should be treated for ALL. Whatever.
He also asked about his blood and when he got the leukemia. We don't know. All we know is that when he got back from Iraq his blood was wonky. Then he came to the VA and this time they figure out through tests that it's Leukemia. The first dr asked when James was exposed to radiation. We don't know! All we know is that he was in Iraq exposed to everything! Come on now igits! Blood work preIraq good, post crazy. You figure that out. It's like he thought we were full of crap. He tries talking Georgia football with James (they both are from GA) and the kid doesn't even know the right rankings for the team, but tries to act like he does. I've been watching Sports Center and ESPN with James, umm I think I know what their newest ranking is! Now if you can't get that right, can you get the medical stuff right? Hmm.. interesting.
Then he said the treatment would be for 2-4 weeks in the hospital there at Jank Center (my words LOL) and that we would probably get a week off then go at it again for 6-9 months! WTH! We were told our treatment would be 4-6 weeks, off a month, then on again, and so forth. How can James work with a treatment plan like that? The dr also wanted to start the treatment tomorrow if he could! NO! We want to follow up with our dr first and make sure this is our only option. If we were to start tomorrow then James would be in the hospital for Christmas! He was deployed last year, I don't want him gone AGAIN this year!
Then I told him that we'd discuss it and call them back. I didn't want to get locked in. I'm sorry but I don't want my husband just to get treatment, I want him to get the best chance at success!Then we left. The dr made me feel like I was stupid and didn't know anything. I do know stuff and do my research. Try me again people! So I called Marlene at our clinic. She's the nurse that's been working with us, and I expressed my concerns to here. She totally understood! I told her how the place looked, and she understood not a good first impression!
She said that she'd talk to our Dr and get back with us. She is also talking to the Social worker there to see about getting us to another Center, at least for a second opinion, that our Insurance will cover! I hope it does! I can't stand Dr. K and don't want him treating James if I can prevent it! We now have to go to the VA tomorrow and get the psych dr appt out of the way, get the TB test read, and then discuss what's next. Blech. So I will hope to update again tomorrow afternoon! :-) Please pray that we won't have to use IGIT and get to go to the right center! Thank you!
The reason for the evaluation was that when the Nashville center received James' blood for the HLA typing, they felt like (since James' blood levels are low although since he is strong and otherwise healthy he's not as critical as his blood work might indicate) he should begin treatment ASAP. Because of that Dr. Stone asked Dr. Kamhambpati (or something like that) to evaluate James and see if he concurred.
So we finally get to a room at close to noon (our appt is at 11:20!). The room is jankity! Where there should have been a vent was plastic held to the wall with duct tape! I think the room decor is older than me! They weren't doing a remodel either! Outside the window there was a hole in the wall too! My oh my!! Finally Dr. Patel comes in to chat.
He says that we will first do Chemo. I said wait a minute! We were told we were waiting until we got to the transplant center to start anything since they aren't sure which type of Leukemia James has. He said well you are going to the Nashville treatment center. Umm no, we told our Dr that we want to go to the Fred Hutchinson Center in Seattle (since we were given a choice that's what we picked!). He says that he was going to page Dr. Stone since he didn't know about that.
Finally Dr. K comes in. First thing he says after he introduces himself is "First let me correct some things". He says that we don't get to choose where we go and that the central office picks. If we were in the the NW then we'd get Seattle (not the Fred Hutch), if we are in Midwest either San Antonio or Nashville. He said he'd tell Central office James doesn't want Nashville, but we'll see. He said that he have to start treatment there and that he will treat it like ALL because it's more complex treatment and rare in Adults.
I said but you all don't know which one he has so that's why were were supposed to wait until we see a specialist! He said that Nashville wouldn't have sent us there if it weren't the best. (Umm we're in KS and that's the closest to us that does chemo, so yeah that's really the reason they sent us there jerkwad!)! Then he said that James would be only the 3rd person he's treated with ALL. I asked what his success rates were and he said that was the wrong question to ask. Umm, you want to treat my husband but won't tell me how successful you are! IGIT! He won't treat James as AML because he thinks he should be treated for ALL. Whatever.
He also asked about his blood and when he got the leukemia. We don't know. All we know is that when he got back from Iraq his blood was wonky. Then he came to the VA and this time they figure out through tests that it's Leukemia. The first dr asked when James was exposed to radiation. We don't know! All we know is that he was in Iraq exposed to everything! Come on now igits! Blood work preIraq good, post crazy. You figure that out. It's like he thought we were full of crap. He tries talking Georgia football with James (they both are from GA) and the kid doesn't even know the right rankings for the team, but tries to act like he does. I've been watching Sports Center and ESPN with James, umm I think I know what their newest ranking is! Now if you can't get that right, can you get the medical stuff right? Hmm.. interesting.
Then he said the treatment would be for 2-4 weeks in the hospital there at Jank Center (my words LOL) and that we would probably get a week off then go at it again for 6-9 months! WTH! We were told our treatment would be 4-6 weeks, off a month, then on again, and so forth. How can James work with a treatment plan like that? The dr also wanted to start the treatment tomorrow if he could! NO! We want to follow up with our dr first and make sure this is our only option. If we were to start tomorrow then James would be in the hospital for Christmas! He was deployed last year, I don't want him gone AGAIN this year!
Then I told him that we'd discuss it and call them back. I didn't want to get locked in. I'm sorry but I don't want my husband just to get treatment, I want him to get the best chance at success!Then we left. The dr made me feel like I was stupid and didn't know anything. I do know stuff and do my research. Try me again people! So I called Marlene at our clinic. She's the nurse that's been working with us, and I expressed my concerns to here. She totally understood! I told her how the place looked, and she understood not a good first impression!
She said that she'd talk to our Dr and get back with us. She is also talking to the Social worker there to see about getting us to another Center, at least for a second opinion, that our Insurance will cover! I hope it does! I can't stand Dr. K and don't want him treating James if I can prevent it! We now have to go to the VA tomorrow and get the psych dr appt out of the way, get the TB test read, and then discuss what's next. Blech. So I will hope to update again tomorrow afternoon! :-) Please pray that we won't have to use IGIT and get to go to the right center! Thank you!
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