Saturday, July 3, 2010

I'm so frustrated...

So much going on... feels like none of it's good...

We went for Joe's appointment on Wednesday. I'd stayed up the night before, after a day of working my behindy off getting the room formerly known as Josh's room/the office ready for painting this next week, making brownies. We get in there... I go back to drop my stuff in the infusion room... Joe goes in for labs, and we get put in the exam room. Gloria, the PA, comes in late, as usual... walks by and picks up Joe's chart. After a bit, she's back. She comes in... very brisk and business like. "We're not doing treatment today." Ummm... huh? Seems that when they ran Joe's CEA 2 weeks ago, his cancer markers were up. Okay... he'd missed treatment the 2 weeks before that, so, he'd been a month without treatment before they ran the CEA. You expect them to be up. That's what they always say to us any other time anyway... She says they don't want to do treatment until they get him in for a CT scan, so they can see what's going on. Ummm... treatment won't necessarily HURT him, even if there are issues with it... but NOT doing treatment WILL... it gives the cancer a chance to get ahead, to grow. Nope. Not going to do it. She said if he could get in Thursday, Joe could maybe come back on Friday and they'd go over the results, and THEN maybe they could go ahead and do treatment on Friday. Ummm... no. We had already taken the day to drive down there (gas we couldn't afford to waste) and Joe was missing a day's work (which we can also ill afford), and so to take 2 more days to run all over God's creation...

2 flippin' weeks ago, they got the results of the CEA. When Joe went the Thursday after treatment for his Neulasta shot, our chemo nurse printed out all of his results. Including the CEA. WE knew for 2 weeks that his CEA was up... They had the same results... same day. Why... in the bloody heck... did they seem to wait until the DAY of Joe's appointment 2 flippin' weeks later to look at the results and determine to not do treatment? If they had looked at the results the day they came in... same day WE saw them... SAW that the CEA was up... they could have called and scheduled his CT for the next week, and had the results back for his appointment Wednesday, or even had him come to the WA office LAST Wednesday to discuss the results so we could have stayed on track with his treatments. Or at least have had a new plan in place for this past Wednesday. I don't know if ALL the docs in that practice do their patients the same, but it just seems to me that Dr. G has gotten a bit too big for his britches as of late... especially with the building of their new mega million dollar cancer treatment center there by the hospital in WA that's due to open this Fall. The left and right hands are rarely working together... and it leaves a lot to be desired as far as care. We hardly ever see the doc... just the PA... and while she's certainly educated, she is NOT the doctor. For a while we'd decided that Joe was one of his patients that was doing well, so he didn't need to see the doc as often. We're beginning to wonder.

The whole thing makes no sense. 6 weeks ago, Gloria went out and brought the doc back in because she couldn't feel Joe's liver (good thing!). It was a great thing... amazing... wonderful... after only 6 treatments on the new batch of witch's brew (as Joe calls it)... then he had the dreadful diarrhea, again, and missed a treatment... Then two weeks ago, she could barely feel the edge of the liver... It's a stinkin' merry go round... and it's wearing me out!

Anyway... Joe finally got in to get his CT yesterday after work... He'll take off a bit early NEXT Wednesday to go in and talk about the results... Then depending on what they've seen... I guess we'll maybe schedule for treatment again, the NEXT week.

And in the meantime too, we have the ascites that Joe's having to deal with again. He's got a good 6-7 liters in his abdomen again... don't know WHY. The Denver Shunt is supposed to keep that drained, unless it's blocked/clogged... The PA had asked him if he was okay with it, or did he want to get it drained, and in all our dumbfoundedness, Joe said it was fine. ?!? (he's since called back and scheduled to go in for a paracentesis... but that's not until the 12th!)

And they're still not really telling us anything on Joe's kidneys. For MONTHS, the PA was pushing, pushing, pushing Joe with potassium... pills 2 times a day. Gatorade... Well, then when he went for fluids... Memorial Day? the on call GI doc made a comment about Joe's kidneys. The OUR GI doc didn't really address it, so we brought it up with the PA on that visit 2 weeks ago, and she told Joe to go easy on the Gatorade... due to the potassium... I wonder if she's not saying a lot because SHE is the one that pushed the potassium... so SHE is maybe the one who's caused the kidney issues? I promise you, she'd never admit it. They never take responsibility for their bloopers. When Joe was on the other treatment and started having the rigors, Doc's dad came in to the hospital and the first thing he said was... they were thinking there was an infection in his right port... For 2 more months they were back and forth... Joe having the rigors... was it the chemo, or an infection in the port? An infection COULD have well KILLED him, but they piddle-farted around and then finally decided, yes, it must be an infection... and then THEY were supposed to contact the surgeon... and WE ended up having to call and get set up to have the one port removed, and a new one put in... THEN, they were supposed to check and see about Joe needing platelets before the surgery... We never heard anything, so figured we musta' been good. Get there the morning of the surgery, and the tech was concerned at Joe's platelets, but they went ahead with the surgery anyway, and THAT'S when Joe nearly bled to death. When we were discussing him needing to get the gallbladder out (which STILL hasn't happened... Joe's just eating the heck out of anti-acids), the PA said that she doubted that Dr. W. would do the surgery with his platelets at around 90,000. We told her he'd done it at 39,000, she was like "When?" Ummm, when Joe nearly died? She said, "Well, I wrote orders for him to have a transfusion the night before the surgery!" That's all good and well... but sadly, nobody called to tell US!

My friend, Charlie, has had the same issues with them as far as lack of communication... failure to check out lab results and the like... Fortunately for her, she's pretty much done with them. She's having a horrible time with her surgery for her breast reconstruction... her surgeon is an idiot. Doc G. is supposed to be one of, if not THE best oncologist in all of SC. And he may well be. Unfortunately, he has a really crappy staff.

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