Friday, August 27, 2010

Well, we seem to be cruising along fairly smoothly...

You know, I can't even remember what I told ya' last time? My brain isn't firing on all whatevers today.

Anyway... Joe's on a new treatment... Erbitux... Doc had said he was an excellent candidate, so here's hoping! He had his 3rd full treatment on Wednesday. In two weeks, the PA said we'd do another CEA (measures the amount of cancer in the body... cancer markers) next appointment, the 8th of September (where is this year going?). Last visit, she'd said that while they didn't want to cause false hope, Joe's LFT's (I assume that's what she was talking about), were looking a lot better. About 1/2 of where they were before he'd started this new treatment. Awesome!

Joe's always been a quick responder tho... within 2 treatments of the first go 'round, his CEA went from over 3500 down to 315 or 317. It had gone all the way down to 72 or so before he started having trouble with rigors, which turned out to be an infection in his port, not the meds. Then on treatment #2, within 6 treatments (within... almost 5-6 months, due to all the diarrhea and hospitalizations), his liver had shrank remarkably... but then before we could get excited about that, they switched him to the Erbitux. Granted, his CEA was climbing a bit, but he'd not had a treatment in a month or more last time they'd run it, so it was going to be up.

I don't know... all we can do is still trust that they know better what they're doing than we do, and be praying that this new treatment is the one that will finally put Joe in remission.

I got kind of a weird "vibe" on Wednesday tho... even tho things are looking relatively good. The PA said we should take a vacation... to which we both laughed. We're barely making ends meet, Joe is in the hole for his time off... a vacation? What a joke! Then she said, even if we just went and sat on the beach... that so many folks who live near here never ever go to the beach... and it's true. We don't. Joe mentioned that we live right across the road from the lake but we never go fishing, and she said we should... we should take Chase and go fishing... make memories... This sudden "push" to get out and enjoy the finer things in life... makes me a little edgy. Then when I saw Wendy, the head chemo nurse... our first chemo nurse... she looked at me really concern-ed-ly (is that a word?), and asked how I was doing? I'm great! Really. Usual aches and pains... but with Joe not having massive diarrhea for weeks on end... being able to work pretty much full time... I'm having the time and energy to get stuff done here at home... HE'S able to get some small projects done... we're getting out and about together for the first time in seems like forever. The feeling was, what do they know that I don't know? And I still don't know. While I don't want to be in the dark... blindsided by anything, I don't want to just live in fear of the next moment either. I figure this next CEA will show if the numbers are dropping... if the new meds are working... If they're not, I don't know that we have a lot of other options available to us, unless they decide to try Joe back on the first treatment he'd done and see if it picks back up and makes any headway. It had... maybe his body just needed a break from it for awhile (tho Donna, our fave chemo nurse, and I feel like they jumped the gun a bit taking him off if it... his numbers were never bad with it... they'd gone up a bit from lack of treatment from all the mess with his port, but the cancer wasn't growing really... kind of stable. Like the doc has said, stable is good! If you get a treatment that gives you quality as well as quantity of life, even if it's just keeping the cancer from growing any more, even if it's not killing it off. As long as the body tolerates it... where's the harm?

Anyway... just want to check in quick... let you know we're still alive... and kicking... I'm making some real headway on the house, if I can quit drilling mega holes in the walls where they don't need to be (bad day!). You ever want to check out what I'm doing, let me know and I'll link you to my Photobucket. Except for Mr. or Ms. Chicken Scratches... they're still sending me porn... I'm sending it to spam. I'll have to say, they are persistant!

And... I'm off! (Y'all knew that tho, didn't ya'? LOL!) Hugs! Susan (*"*)

Thursday, August 5, 2010

Keep sitting down to do this, and then something comes up...

First off... YAY!!! We haven't had to go to the hospital for an extended stay for at least 3 months now! YAAAY!!!

Not to say we haven't had a couple of hiccups... but they've been small.

They had finally adjusted the Iranatican so that Joe was just having moderate but managable diarrhea... Thank GOODNESS! That was old after the 1st time. Not to mention the mess here at the house when Joe would make a mad dash... and not make it. Ugh! And the money we spent on "man pants" for Joe... and the issues with him trying to work, and 2 bathrooms, 8 "heads" for over 800 people! Poor baby!

Funnily enough tho, just as we've gotten a handle on it, the doctor has decided on another plan of attack. A few weeks back, he told us about a new drug that has just come out of trials... Erbitux (has a clinical name, but if you want to know it, you're gonna' have to look it up! LOL!). It's a growth inhibitor... it searches out the cancer cells specifically and kind of smothers them. Again, not real clinical, but... It's NOT a chemo, so it doesn't affect the body as adversely as chemo can. Still some side effects, the most prevalent being a acne type rash. It's not bacterial tho... just the chemicals, yet it will react to Rx type acne meds. Joe had his first "taste" of it last Friday. He only got a half dose, since we were running late (not our fault, but more on that a bit later...). Only real noticable sides... a bit of heat (fever/sweating), and he had a headache and backache the next day... but ibuprofen took care of those. He got another half dose yesterday (the treatment can be done weekly or bi-weekly... since they wanted to get him started on it, the first two doses were the weekly doses... next week, he'll get the whole shebang!). Dr. G is really excited about the new treatment, so we're really hopeful!

He's still taking the Xeloda (5FU pills) for an extra punch. So he's still going to get the dry, cracked hands... but since they put him on the 7 on- 7 off regimen vs the 10 on- 4 off... even that's lessen quite a bit.

All in all, things have been looking pretty good since our last hospital stay in March/April... One week, his hemoglobin was really low (7... his should be 12-15 or 17?), so they did treatment, then we went downtown to the hospital and got checked in for 2 bags of blood. Those folks are slow as molasses on a freezin' winter's day! Got there at 3, didn't get checked in until nearly 4. Oh!... he had to have an ultrasound on his arm and neck because his right arm and hand were somewhat swollen, so they were concerned about a clot. Well, first the techs supposedly left at 4, so there was a rush to catch them and get it done... then it was 5... FINALLY at nearly 6, they came and got him. He got back and they ordered his blood... first bag was done in 2 1/2 hours... YAY! We were looking at being done around midnight, then they were going to cut us loose (we were trying to make it so Joe could go to work the next day...). Well, the nurse didn't come back in until nearly 10-10:15 (Oh, nobody told me you were done! Ummm, SHE had just set it to run the last out about 9:15, so she KNEW it was about finished... SHOULD have ordered up his other bag of blood then but, nooo...). THEN she said she'd call down and order up his other bag... That was up about 11... After the first 15 mins. or so, they can speed it up if you're tolerating it okay... Well, he'd just finished one, so whadda' ya' think? I think it was nearly an hour before we got her back... and after she sped it up, it was still almost 2 before it got done. Joe said we'd just stay... I said NO WAY! We're out of here, puppy! So, we gathered up and finally headed home around 2:30... got home around 3:15. Had to REALLY mad birds to deal with... They like to go to bed around 8, 9 at the latest... the light was still on... cages uncovered, and adding insult to injury, we'd had a thunderstorm that had knocked out the satellite, so they didn't even have cartoons to watch! Po' beebies... I was wiped out. Joe had napped, I didn't. I wanted to go to bed to sleep, Joe was feeling chatty. Ugh! Needless to say, he didn't work that next day. Good news, there was no sign of a clot!

Shortly thereafter, we noticed that in addition to the edema in his arm and hand, he was getting it in his legs too, and his belly started blowing up again! We had to get the pump checked out, but first, he had to have a parencentsis done... 10 liters of fluid! That's 25 POUNDS!!! AMAZING! The surgeon checked the pump... messed with it a bit and got it flowing again... told Joe to keep it up... 2 x's a day... He went 3 weeks, then last week, it was filling up again... I had told him to start doing the diuretics again... HE said the PA had said to be careful with them... so when she okayed it, he did. He'd set up an appointment to get drained again at what we figured was about 6 liters, but by that day, it was going down (don't TELL me those things don't work on fluid from the liver, Doc... Les, my LH, was on them during the end of his illness. They flushed him out GOOD!). We still went, and they got 4. We're thinking that with the diuretics and Joe pumping his pump, we're getting THAT under control as well.

Joe had gone yesterday to get his 1/2 half of the Erbitux, and all of his labs were good, aside from his hemoglobin again. 8 this time... They've got him taking stool samples to send in for analysis... Funnily enough... when it's been low, he's felt great! The week WE were concerned about it (he was feeling run down... lethargic...), and wanted him to have labs run... it was fine. Joe's so weird! LOL!

So, anyway... while he's been doing so well, I've been taking advantage of being home and not having to run hither and yon... I've been working like a mad woman on the house. Josh, our youngest, had FINALLY moved out in May, so I kicked it in high gear and got things moved around... took the smaller of the 4 bedrooms and made Joe's office. We're just lacking a couple of small things to call it done for the most part... I cleaned out what was first Josh's room, then Joe's office... Spackled for DAYS! sanded... washed down the walls, painted... moved all the kiddos stuff from the former playroom/craft room over... So, Chase, Maria, and Lochlynn, and hopefully at some point again, Krissy, have their own room for overnights and to play and hang out in. Then I hit the hall bath, which I started on back before Chase was even BORN... and I've pretty much got it back to rights... Eventually, we'd like to put in a new countertop, losing the 2nd sink... take down the huge mirror... new flooring... But it's 100% better than what it was before. Not that many changes, but it was just ucky! Next on my list is the former playroom/ craft room. That won't take a whole lot, but I'm waiting on a bit of $... New purple paint, fabric for WTs... paint the bed... the TV/craft storage armoire... I'll pretty much be good to go! Of course, carpet cleaning in all 3 of the former bedrooms.

From there, it's just touch ups in the hallway... living room... kitchen... Then I'll be ready to get back to our master bedroom and bathroom redo... which has been on the backburner for about 3 years now. And I've only had my bedding for nearly 5 (that I refuse to use until it's all put together!). I'm feeling more like myself now, without all the drama and trauma going on.

Money still stinks... still no raise. Still no Boeing... Every month we're basically a month behind on most everything. Went to Wells Fargo for assistance on our home equity loan... just finished our 3 month trial period, with Joe doing credit counseling... Hopefully they'll do more than they'd originally started with. Took ONE stinking % point off of our loan. No, it's not a mortgage per se... but they were still threatening foreclosure (HOW can you foreclose on a $250,000 property over a $50,000 loan?). Anyway, the credit counseling folk were to get with them... maybe going to recommend that they lower our payment even further... We're at 6% now, I think...

Anyway... things are better, Joe wise... Just pray that the job thing gets a good kick in the pants soon. If Joe could just get that raise he'd been promised... another $400 a month or more would sure ease things! Hugs all! (*"*)