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!