Saturday, December 25, 2010

Merry Christmas!

Didn't want the day to pass without wishing all a most blessed Christmas! Today we've celebrated Joe's 3rd Christmas since his cancer diagnosis. It's been step by step, sometimes baby steps, but man... 3 years after a stage IV cancer diagnosis is pretty awesome! (well, not 3 years exactly... 2 full years and 2 months, but 3 full Christmases... 3 birthdays... Cool!!!)

We had a great day at Mom and Dad's... Some strange family dynamics going on, but all that were there had a good time... lots of good food and laughter.

Hope that everybody had a good day... that your blessings were many on this wonderous Holy day. Love and hugs, Susan

Wednesday, December 8, 2010

Happy Birthday to my dear Joey!!!

We had a wonderful Thanksgiving! So much to be thankful for!

Then today, we celebrated Joe's 57th birthday!!! wonderful!!! We weren't sure he'd see 55, then 56 looked promising, but the first of this year... making 57 didn't look good... He did it tho! By God's grace, he's had another birthday... and right now, things are still looking good for 58!

His checkups have been really good... His liver #'s continue to fall... everything else is staying stable. Hemoglobin was better this last visit, so no Aranesp. He's still having a bit of trouble with his hands and feet (cracking and bleeding... some tingling), but we're staying on top of it.

We'll have another CT done in February, to "see" what the cancer's doing, but everything points to the Erbitux still doing it's thing. Yay!

Gearing up for Christmas... most everything is done for the kiddos... Going to try to get the kids a gift card to Applebees or somewhere similar. It won't be much, but we're slim pickin's this year.

But we're whole! And that definitely counts for something!! Just wanted to update...

Wishing you all a most blessed Christmas and hopes for all to have a wonderful new year. Hugs, Susan

Thursday, November 4, 2010

oh boy, oh boy, OH BOY!!!

Things have been really good the past few weeks... I've been able to keep clipping right along on my "taking back the house"... I've redone/freshened up 5 rooms since May, when Josh moved out. Moved Joe's office to the former bird room/kids' room/guest room... Moved the kiddos' room from Daniel's old room/kids' room into what was Josh's room/Joe's office... Painted and decorated the Jack and Jill bath in between Joe's new office and the kiddies' new room for the first time ever. (the kiddos' new room hadn't ever been touched either... was full of nail holes and all kinds of other dents and dings... THAT was a MAJOR undertaking!) REpainted and refreshed the hall bath... that I had started on... over 5 years ago! Last BIG project before the holidays was Daniel's old room, which became my craft room, then had Josh in there for... 3 years? It is now my craft/guest room. I call in Mamaw's room, because I've done it up all old fashioned, like a room in Mamaw's house... AND am hoping that SOON, we will find a way to get her down here for a visit, and she's going to come stay with us for a day or two... and this will be her room. Today, I'm going to be doing some touching up of some of the wear and tear of life on the hallway and living room before we have a crowd of folk out on Sunday for target shooting and a weenie roast.

THEN, I've got to see how far I can get in a week on my little grandbaby to be's quilt, before the baby shower on the 14th... and THEN... I have to hit hard on Christmas gifts that need to be made!!!

I can do it tho!!! I just have to keep up a good head of steam, and the news of yesterday is just what I need to keep plugging along...

So... are you ready for some really... REALLY good news?!?!?

We had gotten Joe's CEA back of a couple weeks ago... and were a bit disappointed that it had gone up some... from basically 78 to 114... but, Joe had been off of his Xeloda for 3 weeks due to how badly it was messing up his hands and feet... so... considering it HAD been almost 700... we would take the little bit higher number. Well... they sent him for a CT scan on Monday, and we got the results at his visit yesterday... The smaller tumors in his liver are GONE! GONE!!! The larger tumors... GREATLY REDUCED... some as much as by 50%!!! He's only being doing the new treatment... 4 months? 3rd time seems to be a charm! At this rate, we could be really, REALLY close to all being gone by Christmas! OHMYGOSH!!! Amazing... God is so good!!! We may be finally seeing an end to this.

I'm not going to lie... there have been times over the past 2 years that both of us felt like giving up... just stopping the treatment and letting nature take it's course... But then Joe would get a second wind, which would buoy up my sails, and off we'd go again... We feel like we've sailed around the world through all kinds of storms... but it looks like fair weather is ahead!!!

Thank you, thank you for all of the prayers and good wishes... The Lord is listening! I love you!!! (*"*)

Tuesday, October 5, 2010


Just wanted to drop a couple lines...

We're still cruising along... Joe seems to be doing better with his treatment/infusion one week and his chemo pills/Xeloda the next. Kind of gives him a continuous feed of cancer killer vs it all at once. Today's his last day of the Xeloda for another week, and tomorrow is treatment day. His hands are getting a bit sore and he really has to watch his finger tips and toes... They'll just split right open and he'll be bleeding with no warning. It's weird... doesn't just split the skin, it'll split right down the finger nail as well.

The Erbitux has a possibility of causing acne like spots on the face and chest... Joe got it on his legs and arms the other week (he's weird... never gets the sides like anybody else). He'd had a boo boo the other week... walking into one of those produce scales at the grocery store and got a big knot on his head... it got all scabby and ucky. Then he got more spots on his head... not really acne like, just got red bumps, then they scaled and seeped... They're all healing up now, but he looked a bit scary there for a few days.

Our insurance turned over on the 1st, so we're having to do like we did last year... first treatment has to be at the hospital so we can avoid owing the good doctor $3000 out of pocket. The hospital has charity programs that will cover what we end up owing for our deductible. Thank goodness! Just what we don't need is more debt.
We'll owe them some, 'cause he has to see the doc and have labs before we go over, but it won't be near the full amount.

Since we're not going to be staying there for treatment, I won't be making cookies this week. Joe had kind of promised the girl who's the doc's assistant something for her birthday, but it's just not going to happen... We were so short this week, no room for treats for anybody.

I'm taking a week off of decorating stuff (Mamaw may be down the end of the month, so I'm on a push to get her room done. Well... not really HER room, but it's Mamaw inspired... It's my craft/guest room. It was the kiddies' room before I moved them over a room. This room is going to be all vintage/antique... purty...). Got to get some deep cleaning done on the house so I can put out my Fall/Halloween stuff out. I don't have a lot, but I want to put out what I do have, and not in a bunch of dust/cobwebs. LOL! Next week, it'll be back to patching holes, then painting... Depending on how far I get, Peanut may need to go spend the weekend with his cousin, Lil' Buggie/Lochlynn next time. I'm sure that'll really hurt his feelings. He loves that girl to pieces! And her him too.

This past weekend with him was pretty awesome. Joe was feeling really, REALLY good, so he was able to get out and spend some time with him... making memories... Joe jumped the lawnmower for him, so he rode around for awhile... then they mowed a bit, until they ran out of gas. That was okay tho, 'cause that meant that Poppaw got to take his boy with him in his "new" truck to get gas. Joe had traded his Ranger in on an Explorer... straight across this time, thank goodness. Chase was super impressed with his Poppaw's new truck. Joe was letting him hang out in the back cargo space... Told him he (Chase) and Nannan could actually put blankets down and camp out in it in the back yard. HAHA! I think that sounds like more of a GUY thing! They came back and did some more mowing... We'd had us a picnic lunch out back... It was just a super good weekend! Joe keeps saying we need to just keep Chase here. I told him watch it, 'cause Chase always ends his visits saying, "I just wish I could come back here and live with you forever and ever..." He's fixing to get his new sister soon, tho. And I think he'd miss his Momma, Daddy, and Sissy after awhile. I would take him in a heartbeat, if needed, but I have to tell you, I love being Nannan. I love being able to have the grands, love them, enjoy them... then send them home to their parents! LOL! I managed okay when Chase and Krissy were here that year/year and 1/2, but I'm enjoying the heck out of being just me again... Joe and I have the run of the house. I can work on projects without getting hung up trying to juggle kids... Joe's not been deathly ill for months now, so we're not having to spend tons of time at the doctor's office or the hospital... It's just so liberating!

Well, if I'm going to get my cleaning done... I guess it's time to say bye for now... I reckon' we'll be getting Joe's CEA done again maybe 2 weeks from now? I'll be back then to post results, if not before, if something exciting comes up... Keep on prayin'!!! We're on the right track! (*"*)

Tuesday, September 14, 2010


Praise Report!!!

The PA had Joe's CEA (cancer marker count) run after we were there last Wednesday...

I think I'd mentioned before how last time downtown the PA had talked about us taking a vacation, or Joe taking Peanut fishing... making memories... and how our first chemo nurse we had had come up and asked "How ARE you doing?" and told me that if Joe DID get the acne stuff, that that doesn't mean that the new meds are working... And then Wednesday Donna, our favorite nurse, had come out before we left and just HUGGED and kissed us both... HARD. Joe was even saying, "Does she know something I don't know?"

Well, Friday I called Donna... and she was busy, so told me to call her back... Then before I got a chance, the phone rang... answering machine came on. "Susan, it's Donna... pick up the damn phone!" Oh gosh... I was even scareder (LOL!) then. "Sit down!" she says... Okay... I'm ready to fuke! "77.8"... "Do you remember what Joe's cancer markers were when they did them in June or July?" "Ummm... almost 700..." "Yep, 693... they're down to 77.8." "Ohmygosh... OHMYGOSH!" "Yeah... when I pulled them, I couldn't wait for you to call back, I had to call you."

OhjoyinthemorningblessedJesusthankyouthankyouPraisetheLord!!! WE'RE IN THE DOUBLE DIGITS AGAIN!!! First time in over a year! Yes, Yes, YES!!! The Erbitux is kickin' cancer BUTT! Just prayin' prayin' that the #'s keep going down... Who knows? Maybe our Christmas gift this year will be a reading of 5 (which is normal)!!! I called Joe and told him... We're still just both super elated.

Praise God... we're back on a roll! We've been so due some good news... Hoping that this is JUST the beginning! Yay God!

I've not forgotten you, Terri! I've got a couple things I'm finishing up to update my Photobucket account, then I'll email you a link. Hugs!!! (*"*)

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! (*"*)

Monday, July 26, 2010


and others... get a clue... Your trash is being trashed... not going to be posted. Go elsewhere!

As for everybody else, I've go a couple updates coming... more good than bad, I hope... for once... LOL! (*"*)

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.

Friday, June 25, 2010

"Dear" 林志宏

For you, and any others who are trying to post the pornography on my blog... save yourself the trouble... I've begun to moderate the posts, unfortunately because this has come up a few times over the past several months. It took me awhile to catch on to it, with all the stuff that's been going on. I mean, who would think that somebody would do something so unnecessary and uncouth on a forum where a person has been pouring out their heart and soul over a horrible situation in their life? I do this mostly for myself... to vent... and to update anybody that's actually still following our going ons... Please take yourself and your trash elsewhere.

To anybody else who's reading... please accept my apologies for the trash that's ended up here. In my naivety, I just kind of figured that anybody posting replies were being sincere... whether they were posted in English or Chinese, or whatever... As I'm now moderating posts, I'm hoping to keep the stuff from coming through anymore. (*"*)

Tuesday, June 22, 2010


So much been going on... I had started to update a couple weeks ago, and to be honest, I don't know where my post went...

Anyway... Joe had chemo last week. We had told the PA that he was going OFF the Xeloda.

The week after his previous chemo, 4 weeks prior, the diarrhea had hit again. He made it through the first week with it... it really wasn't as bad as the previous times. Memorial Day morning, we decided that he really needed some fluids... Since every time he ended up in the hospital, the oncologist played with him with fluids the first week, then called in the GI doc the 2nd. We decided to jump ahead, and we called the GI's office. The on-call called Joe in some fluids, so I dropped him by the local day hospital and went on to Mom and Dad's, and picked him up after he was done. He said he felt a lot better, but the on-call had mentioned something about his kidney function being a bit off...

He had an appointment for that Thursday, so we went in and saw the doc. Strangely, he didn't seem horribly concerned with Joe's dehydration. He had dropped 24 pounds from the Friday before... so 24 lbs. in just under a week. I asked about Joe needing more fluids, but he didn't think it was necessary, but he did have a stool sample taken. He never said a thing about Joe's kidneys, so we assumed all was well.

That next day, Joe was really dragging, so I called back and pretty much demanded that they call Joe in orders for some fluids. Well, he did... one bag for that day, one bag the next. ??? That seemed to help, and then, amazingly, the diarrhea stopped.

That week would have been chemo week, but with him having been so wimpy that week, we knew they wouldn't have done treatment anyway, so he had that week off, and then the next week, he'd already missed one full week's work, so we gave him another week to recover.

Having watched him go through this again and again... We got to seeing a pattern... We KNOW the Iranatican (Irantothecan) is famous for causing diarrhea. But even more than that, every time Joe's hands and feet start getting red and painful, the diarrhea would kick in. From all I've read, the Xeloda CAN affect a person's innards as well as their hands and feet. Joe gets the diarrhea, his taste buds get "off", he gets a "clog" in his throat...

That's why we were determined to go off the Xeloda. Joe had done the 5FU for over a year with no issues... Well, I guess we found out why. When Joe was doing folfox with the 5FU pump, he apparently was getting a very small dose of the 5FU. If he did the same amount of the 5FU as he was doing of the Xeloda, he would likely get the same symptoms. Before he wore the pump for 2 days... the Xeloda, he started out doing 4 pills twice a day for 10 days, then 4 off. They'd reduced the Iranatican down 25%, then another 25%, but they only took the Xeloda down 25%... so 3 pills twice a day, 10 on, 4 off.

We asked the PA about reducing the pills again, but she gave us a little dose of reality (we do need that every now and again, I guess...). Our previous visit 4 weeks prior, They weren't able to palpitate Joe's liver... well, I wrote about that in my last post. She said for the first time in awhile, we seem to be kicking cancer butt. We've already reduced the Iranatican by half... if we pull back too far on the Xeloda, we just may lose the lead we've got. We could very well get Joe into remission vs just keeping the cancer stable if we push on. If Joe can deal some with the diarrhea and us just stay on top of it, then maybe, just maybe... She was willing to make a bit of a concession... instead of doing 10 on, 4 off, we're going to go to 7 on, 7 off... give him a little longer break in between rounds. Today is our last day for this go 'round... as of yesterday, Joe's hands and feet started getting sore... We've been doctoring him pretty good with Imodium, and so far, so good. No diarrhea... not even a hint. 'Smatter of fact, Joe may be a bit... "clogged" up... but better that for a couple of days than the perpetual runs.

We're hoping and praying that this may finally be it. We may have the dosages of the drugs right that they will continue to attack the cancer, but NOT attack Joe. We can't live with the 2-3 weeks of diarrhea anymore. We are flat out busted financially... just barely holding on... On the verge of losing our house... we've had to quit paying on some of the non-necessity bills... The financial stuff is just insult to injury on top of the cancer... If you would... just pray that the new dosage keeps Joe healthy enough to work (and who knows, if he stays healthy, I just might be able to explore getting a job, or at least devoting more time to my crafting, which brings in a bit more here and there...).

We are fortunate that now and again, we get a blessing from unexpected sources... My sweet Mamaw... 89 years old, on Social Security, and she sends us a check now and again when she knows Joe's been out of work. We lost Pap to colon cancer just a couple years back... so she knows what we're going through, somewhat... Some of Joe's co-workers still occasionally donate time to him... or give him a cash gift. The new guy they hired to be Joe's helper... he's super sweet... He lost his mom to cancer just recently. He'll buy Joe breakfast and lunch during the week... told Joe he's his blessing. That it gives him a good feeling to do for Joe since he wasn't able to be with his mom for much of her illness.

Right now we could use a major blessing... It's happened before... I'm just holding my breath to see how we're going to make the house payment this month... and pay my truck taxes. I have faith it will all come together... but waiting with bated breath. (*"*)

Thursday, May 20, 2010

Dare we even hope?!?

Yesterday was chemo again... We had two actual NORMAL weeks!!! No diarrhea, no major issues of any kind (Joe HAS developed a... umbilical hernia... but they're not concerned with it unless it starts to cause him pain or discomfort). After all we've gone through the first part of the year... ohmygosh!!! To have... 4? 5? weeks with NO diarrhea... and Joe's back to work full time... and can even get overtime if he's up to it!!! OHMYGOSH!!! It's amazing! And he's feeling good... Tired when he gets home, but that's kind of normal for a 56 year old guy, I think... who gets up at 4 AM to go to work...

But the best thing... the thing that's making us rather excited... The PA came in yesterday. She was all upbeat and perky (maybe she DID hear me talking about her being so ugly and cranky at the hospital, and SHE'S taking happy pills now!)... We talked about how Joe's feeling... stuff... Then when she did his exam, and got to the feeling of his liver, which they always do... She poked... and prodded... poked and prodded some more... smiling, smiling... she grabbed up Joe's chart and said, "I have to show this to Dr. Geils" and out the door she went. Then HE came busting in... smiling, smiling... patted me on the shoulder, "Hi, how are you?" then goes right to Joe. "Lay back"... so Joe did. We're like... Oookay... And he's poking and prodding, pushing... thumping... poking... smiling... Smiling at Joe, smiling at me... "Remarkable... How long has he been on this treatment?" Gloria says, "So I was right?" and they're smiling... They look through his chart... count up the treatments... 3, 4, 5, 6... "Just 6 treatments... this is amazing... Remarkable..."

APPARENTLY... Joe's responding WELL to the new treatment... just since 2 weeks ago... his liver has shrank in size AND is softer than before. REMARKABLE! Most especially so, after last visit when the PA made the dire pronoucement that Joe will likely NOT respond to this treatment, since he didn't to the last one (well, he did... after just 2 treatments, or 3, his cancer markers had gone from over 3500 to just 315... then 200 something... finally down to 72 before they quit falling so much... then we were having the infection in the port issue, and he was missing treatments due to the rigors... then the acites... just so many bumps in the road... who knows if they'd have stayed the course?). That he'd likely be on maintenance treatment the rest of his life. After she walked out, Joe was kind of down, but I told him, DON'T discount God. He can work miracles, if he so chooses... He can heal you with or without the chemo. And now this week... the doc was still pushing around on Joe's liver, and I just said, "God is good." He said, "He certainly gives us our tools..."

Kind of holding our breath... they're going to run Joe's CEA again next treatment... that checks the cancer markers... 5 is normal. Joe was at 400 before the treatment before yesterday. It'll be greatly interesting to see what the number is after this treatment yesterday. We trust God to do with Joe whatever His will with all of this... We're just praying that He's truly smiling down on us, after all the valleys we've traveled in this year...

Join us in praying for our miracle. (*"*)

Wednesday, May 12, 2010

So far... so good...

Today is one week from Joe's last chemo treatment. They had reduced the dosage of the Iranatican again... and thus far... no diarrhea... Not even a niggle of it. Praise the Lord!!!

If a body has never dealt with chronic diarrhea... you can't imagine how wonderful it is to NOT have to deal with it. No more man pants (Joe is LOVING that!), no more massive doses of Imodium (tho we did do a few doses for the first few days just after treatment, and he IS still on the Welchol... which is supposed to be helping to keep the scooters at bay). We've been able to get out and about without the fear of him needing to go, and no bathroom nearby... Just breathing a HUGE sigh of relief!

He was able to work a little over 1/2 days last week... This week, he's gone back to full time... Was out yesterday getting his right eye operated on... no more cataracts! Aside from a couple of follow ups... going back at some point for a quick lasering of his left eye (the pocket that the lens sets in had just a bit of plaque on it... going to bust that away)... the eye business is done.

Likely not this week, or next... we're going to have to get him set up for surgery to remove his gallbladder. Dr. Geils and Dr. West are going to have to coordinate that, but it IS going to have to go. He's had 2 or 3 flare ups with it since we ended up in the ER Easter morning. Little bit "scary" as the gallbladder is another pre-filter (or co-filter) for the liver... The liver being compromised with the cancer already has the gallbladder and spleen working overtime...

Last trip to the oncologist... we saw the PA (Dr. G seems to have just turned Joe over to her... we were at least seeing him every other visit, or at least once every two months, but lately, it's been just her, unless Joe has issues that she wants the dr. to check on). Joe asked her about the last sentence that the dr. had written on his "back to work" note... about the condition not being expected to improve... actually to worsen... Her answer was that they still HOPE, of course, that the chemo will cause the cancer to go into remission... for the cancer markers to continue to go down... but since it's NOT happen thus far, in over 1 1/2 years... we're looking more at maintenance. Chemo every two weeks for the rest of forever. Chemo until this treatment loses effectiveness akin to the Folfox... then, that's it, I guess.

So, we just keep praying for a miracle... keep praying that God will touch Joe and aid the chemicals... put the cancer into remission... Beyond that... we just keep plugging along... taking each day one day at a time... living to the fullest. Can't just give up... can't just quit... There are those who think that Joe should go ahead and go on disability, but I tell you, when Joe doesn't work anymore... when he CAN'T work anymore... it'll be just a matter of time... Joe has to be able to work. At the point he can't, that'll be the point he just shuts down. I know it's coming... I just hope it holds off for awhile... We need some good days for awhile... some degree of normalcy. (*"*)

Thursday, May 6, 2010

I'm sorry...

for not having updated sooner. I swear, my brain is MUSH!

We're out of the hospital! Actually have been for about a week and 1/2. Keep trying to find some degree of normalcy here, but I'm beginning to think that we're about as normal as we're going to get. We may get some good days... but we're going to have bad days too... and apparently it's going to get worse... not necessarily better... without an absolute miracle from God.

It took nearly 2 weeks, again, for them to get Joe's diarrhea under control. The PA kind of lays the blame at our door, for Joe getting so far out of control... I'm not beyond still being a little torqued at her... and him too, really... the Dr. that is, not Joe.

THEY do not get that we have no extra income. The 4 weeks that Joe missed work in April, we have gotten a lovely $198 and change check from short term disability. We're beyond behind on the ignorant home equity loan I let Joe talk me into (there's more to that, but I'll not go there... gets me super PO'd at Joe, and right now, I want to love him more, not less)... our property taxes... we've got vehicle taxes coming up. We DON'T have the freaking money to come running every time he has diarrhea. They NEED to work with US to get some things done up here in MC vs driving all the way down to downtown Chasn. when they want blood work done. Even WA is too far if we're home... tho it's just a click away when Joe's at work. You can't get them to understand that tho. Call in to the local branch of the hospital for lab work... we'll go in... they can fax or call the results back, and then the PA or Dr. can request whatever Joe needs doing done. She acts like THEY are the only ones who can administer fluids. BS! Sorry... I'm just stressed.

Adding to the financial stress... Ever since our financial "issue" with the oncologist's office last Fall, I've been kind of knowing that things with Joe's prognosis was "iffy". The head chemo nurse had made a comment to me about the stress of all we were going through with their financial office being a lot when we were having to deal with the fact that the every two week chemo was going to be it for the rest of Joe's life. I really didn't question her... or say anything to Joe. Joe's fighting for his life. He's come close to wanting to hang it all up more than a couple of times. If there is ANY chance at all of him clearing the cancer, going into remission... I don't want to take away from his hope of a full recovery.

A couple of times just the first of the year, with the new treatment and all the diarrhea stuff, the doctor has written in his notes that Joe's had to have for his employer and whatnot, about the cancer being incurable... about the situation getting worse, no prognosis for better... Joe has always "explained" it away saying that, of course, the cancer at Stage IV is never considered cured... he can go into remission, but he'll always be considered as having Stage IV colon cancer.

Well, yesterday, he asked the PA about the Drs. remarks... Basically, she said that this is it. Chemo for the rest of forever. Of course, there is the "hope" that the chemo could finally kick cancer butt... but, for the most part, since it didn't during the first year and a few months... and the first round of drugs stopped working... Joe is either still not grasping what she said, or is, for his own sake, and maybe for mine too, glossing over it... STILL thinking that the new chemo is going to get his markers down... bring him into remission. I mean, I'm sure THEY hope so too, but I don't think they're counting on it. For the moment, I really don't want Joe's bubble busted. As long as he thinks he is going to get better... Attitude is a large part of dealing with any illness. As long as he's positive... he's going to have the drive to keep going. As long as he keeps going, I can keep going. Or I'm sure as shootin' gonna' try.

I can't say that I'm not torn up inside... since I pretty much "get" what they're saying. This is a whole lot different from when Les was sick. With Les, we were hopeful up to the last hour. Not to say I'm not hopeful with Joe. I believe and trust with my whole heart that if it's God's will that Joe be healed... Joe WILL be healed. It can happen. It's happened with others. And I don't know God's mind... so I don't know why Joe... why we... are being left to struggle so with all of this. I sometimes think, "If you're going to take him... just TAKE him!" We've come so close to losing him this year. 3 times. I don't think anybody but Joe and I, and the dr. and hospital staff, really realize just how close he was...

I think the scariest part of that for me is... with Les, I had tons of support. The online support group I was a part of... family... our church here... a few close friends... Right now, I'm feeling really alone. I guess I SHOULD try to find some sort of support group... but then again... I don't want the cancer overshadowing the rest of our lives. I don't WANT our whole life to be about cancer. I want our life to be about life! Family? My mom is so freaked out about money, she won't visit us, my poor older brother... "can't afford the gas". Hell, we can't afford the gas either, or any extra, but we have gone to see Mark (he was feeling alone enough before, with his STB ex-wife's stunts... but other stuff has come up... and now he's feeling really friendless... my younger brother is even bailing on him...)... we make it a point to make it to all the family get togethers that we can... She and Dad have two incomes with both their SS checks... They still have some in savings... We're sucking hind tit here, and SHE acts like THEY are floundering... I barely hear from her or Dad unless something is coming up. Like Mother's Day... dinner at their house... That's fine, but... The whole time Joe was in the hospital, she and Dad came once (gas)... called just a couple of times. My sister didn't even KNOW we were in the hospital until we'd been there a week... She was planning on coming down to steal me away the day we were released. I actually rarely ever hear from her... I realize she's got stuff with Loch... her and Jason have their couples small group... she has her women's small group... they have their friends... My brother, Matt, and his wife... Stef works a couple buildings over from the hospital. The whole time we were there, nary a phone call. She goes with her work friends to lunch all the time... sometimes right there in the hospital cafeteria. No effort made to come visit. Of course, Mom may have not told them either, as she hadn't told Sandra (who she sees and talks to daily)... but still. Mark IS about the only one we see or talk to at all... and that's generally just when he's really bored or lonely.

I'd say, it's a good thing you can pick your friends, but there again... The two next door... our Friendly Neighbors... I can't fault Gary... he's a hard worker, and he would do just about anything for Joe. "Brothers from another mother", they call themselves. And Patty... she DOES have a good heart. She just doesn't have a fully functional brain all the time. I've made myself step away from her a time or two. Everything is about her... always about her. Our financial problems are due in part largely to circumstances beyond our control... work and health related. They're having money problems too... the steel mill is slow, so his checks haven't been great. It was the same last year, but the whole of last year, they were traveling... going on vacation here, there, and yonder... And she is a shopaholic. Kohls... magazines, off the TV... her house looks like a... bomb went off. She's a hoarder. She's got more clothes than she can possibly ever wear. More stuff... stuffed in boxes, closets, under the beds. I doubt if she even knows half of what she's got and where. She keeps her life just as cluttered... constant drama... Two boys who like to use her... one she gets PO'd at, and the favorite one, she finds excuses for... She and her ex have been divorced and she's been remarried just about 20 years. She STILL hates him... still blames him for troubles in her life. Her now husband bends over backwards for her... doing stuff to try to keep her happy (last time he didn't devote himself to her, she left him and had an affair with a druggie... then when that didn't work, came back to Gary... and I'm afraid, given half a chance, she'd do it again...). She's just flighty. No real commitment to anything, or anybody, but her grandkids. I can't ever count on her to truly be there for me, 'cause she is everywhere else.

I do have one good, dependable friend... but her life is upside down right now too, due to cancer. Breast cancer... remission... Just had her reconstruction done, and it's not good. She's 5 weeks out...? Having all sorts of complications... My heart just goes out to her. I can't do much for her tho, as she's nearly an hour away... and I don't have the gas money to be able to go visit... sit with her... take her out for errands or appointments... She is having a lot to deal with, and now worried over Joe too... She does have other friends, at least, close by... her husband is a turd and her daughter is entitled and self-serving... lives at home but doesn't lift a finger to help.

I think... just one day... I'd like to step out of my life for a minute... be somebody else, somewhere else... But then again... I'm where God put me... all of this has to have a purpose... so I'll just keep on keeping on... Praying... always praying... (*"*)

Thursday, April 15, 2010

Good golly!

What a difference just a few days make! (have I said that before?)

We're back in the hospital... have been since Monday. Things were going so good for a couple of weeks and then... here we go again!

I got a bit ticked Monday when Doc G came in and Joe said something... Doc said, "Well, if you would have come in like we wanted you to..." Well, we both told him, Joe went for labs Thursday, and we waited for somebody to call us Friday, ALL DAY! and nobody did. THEN Saturday Joe called and got his dad to call in orders for hydration and whatever else was needed. Couldn't tell if Doc was aggravated with us, or with his staff.

Well, today, the PA came in. I'm getting really tired of her. She's got a bit of an attitude that she's doing us a favor or something... Joe was talking to her about the different meds he's on, and she made some snarky comment about IF he'd come in like he was told... but no... he wanted to go to Roper Berkeley (close to home) for labs... which SHE doubted he even did... Oh man... if she'd not have been walking out the door when she said that.

I don't know HOW to get through to these people... we have no freakin' money! We're behind on our home equity loan... being threatened with foreclosure... We weren't able to pay our taxes for '09 on the house yet, so that's going to be more money we've got to come up with before the end of the year... Joe's getting $200 a week in short term disability... when the idiots up in Rock Hill get the info to the lady at STD... It took 3 weeks to get the last check! We should have one this week from last week, but... the dingbat that's supposed to call Kathy with the info apparently didn't... and now tomorrow is another week... we won't have a paycheck. We don't have the flippin' money to be driving downtown every time they want labs. They can call in orders and THEN if Joe needs to come in... CALL!

Joe told Dr. G about Gloria tonight when he came by. Dr. G said, "Well, we can't go by labs that are hours old..." Why not? if they were bad 2-3-10 hours ago, chances are, they're NOT going to be getting better... Call and say, "Your numbers were off from the labs last night... you need to come on down and let us get you fixed up." Done.

BS... I'm sorry, but I've so had it with all of this. Don't need to worry about the cancer killing Joe. The cure is going to. I can tell you, I'm going to have to bite my tongue in half tomorrow if the PA comes in again. We are NOT stupid people... Don't treat us like we are. She used the same dumb act on our friend, Charlie, about her Coumadin... "Oh... this is the first I've heard about this..." Liar. Charlie had talked to her... to Doc G... to the doc's aid... for nearly 2 months!

Before Joe has chemo again, the doctor has to come up with a different plan of attack. This stuff can't go on anymore. Joe may as well just go off the chemo and die a "natural" death. Insane...

Well, enough for now. They'll be in again shortly to give him more meds... check his blood sugar (that's the new thing... with the TPN (nutrition in a bag... looks like Mountain Dew), the blood sugar can go up... which means he has to get insulin shots, on top of everything else... and shots to keep his blood thin... and shots for the diarrhea... and pills out the ying yang...). I've got to get ready for bed so I can be able to get up with him during the night, if need be.

Just keep the prayers coming, if you would... need to get over this bump in the road... again... (*"*)

Thursday, April 8, 2010

Moving along through April here...

STILL dealing with the diarrhea. We're fixing to go to the pharmacy with a list of all Joe's meds to see if the mix of some of them are reacting adversely. The doctors may all prescribe, but they don't always know how things mix. We KNOW that the one chemo med causes diarrhea... but we've been working to stay on top of that. Seems what has been working isn't any longer. ugh! Aside from that just being miserable for Joe, it's making it that he can't even go to work. There are 8 "heads" for over 800 people? and the area he works out of is nowhere near to a toilet. When you're getting no warning... it just hits you... you don't have time to try to go to the 4 corners to find an empty stall. This is about to kill us $-wise. We were already sinking... this is just adding to. Joe's fixing to call the oncologist's office today. We KNOW what they're going to say... "come in... get some labs..." and from there, it's going to be across the street to the hospital. We want to do what's necessary for Joe's health, but this hospital thing every month is getting OLD!

A good thing to report... Joe had surgery on his eye Tuesday. His left eye was completely cataracted... Vision is already near 100% better... a little blurry, but getting clearer daily. He'll need a little lasering to get some cataract that was on the back of the pocket, and they have plans to replace the lens in his right eye at some point soon as well (cataracts likely chemo related), then he'll be good to go vision wise. At least SOMETHING going right!

Well, can't totally complain about the chemo... #'s have been going down again... That's a wonderful thing... It's just that quality of living with chronic diarrhea isn't a good thing...

Well, that's it on the home front for now... just doing what we can and know to do to keep getting on.

Thursday, April 1, 2010

WHERE did March go???

Mercy! The month flew right outta' here!

It was a good month tho... after all the bad beginning... Joe's had no other real issues with the diarrhea... We've been using the Welchol and Imodium as a preventative starting a few days before treatment, and IT'S WORKING! Not to say he doesn't get a little loose every now and again, but we know to stay on top of things and not let it get out of control again. UGH! Do NOT want to have to go through that EVER again! I still need to borrow my mom's shampooer. Not pretty!

All in all, Joe's doing really well... He's back to working full time. Now and again, he'll miss a day... or a few hours... but he's doing really great, all things considered. God really reached down and touched him for sure. January into February... February into March... we weren't sure he was going to make it. Seriously... he was one sick puppy. Mood-wise, he wasn't there either. He was ready to die, or just hang everything up and go on disability.

Coming out of the hospital tho, he had a renewed zest for life... a new determination to get back to work... We'd kept Chase a couple of weekends ago, and they got out and were building some really good memories for the both of them... We worked out in the yard, and Joe was taking time with him... helping him do "man" stuff... "they" jump-started the lawn mower... rode into town together for gas (that's the FIRST time Joe's ever really had Chase BY HIMSELF!). Came back and it was starting to sprinkle, but, by golly, the boy was wanting to drive the mower, so Joe gassed it up and off they went... Chase steering and Joe operating the gas and brakes (thank goodness... Chase is a good driver, but he could get a little out of hand if he was doing ALL the driving!). They really had a good time together. And they both needed that Poppaw/Peanut time. We get past this pollen season, I think Poppaw plans to take his Peanut fishing. I plan to go along... just to supervise a bit. I know how MY Papaw watched MY boys around the water... Josh got off in the pond and was muck and mire... LOL!

Anyway... Praise be to God... things are so unbelievably better! I have renewed faith that we can maybe actually BEAT this thing again. Good news... it's such a wonderful thing!!!

Thursday, March 11, 2010

Sorry I've not been keeping up very well... We're home...

Got home Monday afternoon... The docs combined (GI and oncologist) finally got it together and got the diarrhea stopped. A combination of Imodium and a cholesterol drug called Questran (it's main side effect is constipation... so it counter-acted the diarrhea). Took them for forever, but now we know! The GI doc had just switched him to the pill form of the Questran, Welchol, so we got a Rx for that sent home with us... Since the diarrhea is considered to be chemo related, we'll be proactive with his next treatment (next Wednesday)... We'll have our Imodium and our Welchol at the ready. We're not doing THAT again!

Compared to the last time we came home from the hospital (early February), Joe is 100% better this time! His mental state, his physical state... he's just sooo much better this time around. Of course, last time, he still had the diarrhea when he came home. He was weak... his spirits were low. He'd taken a week before he went back to work, and he was still dragging his hiney. Of course, they'd done chemo that first week out, and I think that just added insult to injury. He was already low, and that just laid him out. This time, the diarrhea has been stopped, so he'd not losing all those vital nutrients like he had been. His appetite is back to normal. His attitude has done a 180* from even last Saturday.

He'd been at a really low point the last couple of weeks... he was ready to quit chemo... go on disability... just hang it up. Sunday, our dear friends/Joe's Boeing boss came to see us at the hospital. Au had gone home from church and made Panzit and egg rolls... baked a pineapple roll cake... brought all of that up to us. We ate and visited. Tony was telling him how much he was missed at work... how things are ramping up with the new plant being built... that they're fixing to start picking up some of the contract workers from Joe's company as Boeing workers... He got Joe all fired back up. He's chomping at the bit... raring to get back in there and get to it. He's been calling down there almost daily since we got home to see what's going on. A new lease on life.

I certainly wasn't going to push him if he didn't feel like he could go back to work, but I'll be honest, I wasn't prepared for him to give up and just lay down and die. I know that there may come a day when that becomes necessary, but... just not yet, Lord... just not yet.

Things are hopefully looking up all around for those in this household... Joe's got a stronger promise of better things to come, hopefully SOONER than later. Josh is starting a new job... the husband of a friend of ours (that we met at chemo) works for a construction company here in the Charleston area. They're starting to do some hiring for some new jobs that are coming in. Since Josh has been working construction for 4 years up to his layoff in November, Rich got him to fill out an application and got him hired on. He had his drug test today, and his indoctrination... It's raining today... and maybe tomorrow... but he's hired! and for $12 an hour vs the $10 he'd been making with Truluck, and the $9 with the landscaping company he'd been with since. Go Josh! Daniel had been with a company since back around the same time Josh got laid off... placed by the temp company he'd gone through for his last job. He'd started out at $18 an hour... had just gotten a $1 an hour raise, and now the company is maybe getting to bring him on with them directly. He's had his interview, just waiting for an answer back. He gets on with them, his pay goes even higher. The scary thing for them is that he could be transferred, but... maybe not.

Things could be better, financially, but they could be worse too. The first 3 weeks Joe was out of work, the folks he works WITH donated time for us to get a check. He's supposed to be getting short term disability, which isn't much $... the lady "in charge" at his company had said that the donated PTO wouldn't affect it, but the lady with STD is saying maybe differently... depending on how the company codes it. We've been so far behind on stuff, a little extra would be a big help... but looks like now we may not get any extra at all. If the Boeing thing would happen just real soon... it would be the biggest answer to prayer of all. Joe's pay would at least double, which would allow us to maybe get caught back up, if not a little ahead, which would be WONDERFUL! I don't mind pinching pennies, but squeezing blood from turnips is getting a little old.

Well, Joe's going to nap, so I'm going to sneak off here and find something constructive to do. He wants me to sit with him, which I don't mind doing, but I've got a bazillion things what need doing... so I'm going to slip off here and do a few of them.

Keep the prayers coming... they're working! Hugs, Susan (*"*)

Friday, March 5, 2010

Figured I needed to update...

We DID end up coming to the hospital... and we're still here. Trying to figure out the diarrhea... trying to get the diarrhea stopped...

Joe's been losing so much of his nutrients due to the loss of fluids, so they've been pumping him full... Saline, potassium, magnesium, phosphorus... He's over acidic, so he's getting sodium bicarbonate in his saline, as well as pills two times a day... and more.

He lost his appetite due to the Flagyl that the PA had prescribed. He has a hard time eating some things since he's had the sores in his mouth (and apparently throat) due to the chemo. I've tried sweet talking, threatening... Sometimes he'll eat a bit for me, sometimes not. Frustrating.

Tomorrow will make a week since he got himself admitted. I spent 3 night sleeping in a recliner... then Joe got mad at me and made me go home Tuesday night. I came back Wednesday tho... with a couple bags of foods that I know that he likes and will eat, when he can.

Right now, he's napping. We had a looong night last night. Supper was beef stroganoff... it was very good... until about 11:30-12 last night. I got diarrhea... he got worse diarrhea... we were tripping over each other getting to a bathroom. Fortunately, there is a public bathroom just outside our door. We were double timing. It went on until about 4 this morning. From 4 to about 7:30 we were finally sleeping, and they came to take him down for an xray. He JUST got settled back down around 10. He's napping good now, and hopefully will be able to rest pretty good the rest of the day.

Sis and my Lochy Buggie Girl will be here around noon to visit a bit, then I think Mom and Dad may come up later tonight. Our Friendly Neighbors have been up two nights in a row... Gary's been really worried about Joe. They is brothers from another mother.

That said, I should get off of here and make sure I'm ready when the girls get here. Just keep us in your prayers... this isn't a pleasant time...

Saturday, February 27, 2010

Probably heading back to the hospital here soon...

Joe just can't kick this diarrhea... it's been a week now. Seemed to have been getting somewhat better (says he), but when he called down to the oncologist's office on Thursday to see what the results of the tests they'd run on Tuesday were, the PA was on call, and she got all freaked out (still diarrhea and a tad bit of fever), and wanted him to come back downtown. Joe just refused. Said he'd just been there Tuesday and saw the doc. Doc had said to up the Imodium and get plenty of fluids and all... had sent us across the way to get fluids, potassium and magnesium... Since the tests were all negative (finally got them to check the results), there was no reason to go for more. At the end of the day, since Joe had refused to go down, the PA called in some Flagyl... an anti-infective. Well, Joe started that, and the diarrhea has actually gotten worse. So, we've just stopped it. Going to try to get him to where he can travel without oopsing in his drawers (he's had a couple times he's not even made it from the bed to the bathroom), and then we're going to call the office and let the on call know that we're coming. Pretty much KNOW that he's going to have to have more fluids. I can't get him to eat for anything. They may end up putting in a feeding tube. I just don't know.

I KNOW that Joe can't do much more of this... but honestly, I don't know how much more of this I can handle. I'm just about worn out. This part of it is way worse than what I ever went through with Les, tho I can't imagine. Les stayed pretty mobile right up to when he went in for his transplant. I rarely had to run and fetch for him. Joe's been pretty much bed ridden since last weekend. Just doesn't have the energy to get up and go, or isn't wanting to get too far from the potty. I can barely get out of hearing range, much less out of the house.

Just pray for us... I just don't know what the next steps are going to be. (*"*)

Tuesday, February 23, 2010

It was a good weekend...

it was a not so good weekend...

Chase was here Saturday night and most of Sunday. We had a good time, playing cars, watching cartoons... he helped me some out in the yard with the wax myrtle that broke in the snow and ice (good thing HE did... 'cause my brother never did come...). None of my family made it to the February birthday celebration. Daniel and Stacy came to get Chase, but said by the time they got to Mom and Dad's they'd have to leave to be home when Maria's father brought her back. They sat and visited here instead. I don't think Josh and Ashley went either. They'd planned on going Saturday night, but that all got changed around since my other brother had arranged a surprise BD thing for his wife. So, instead of 3 BD celebrant's on Saturday, they had two on Sunday. Oh well.

Friday night, I'd had to go pick up some Rx's for Joe... he'd started with the diarrhea again... and was getting sores in his mouth. He spent all Saturday in bed... and all of Sunday... Couldn't be any further than that from the bathroom. Finally called in to the oncologist's office Sunday morning and the on call doc called in a stronger anti-diarrheal med. Two days, and it's still not working...

So... we're fixing to head downtown to get him checked out. God willing, the PA will be able to come up with SOMETHING to get him back on the right track with all of this. Something has got to give...

Friday, February 19, 2010

The fun is neverending!

Joe went back to work on Monday... red, swollen legs and all. Was supposed to take it easy. I told him not to push... if he felt okay doing 8 hours, do 8 hours... or 5 or 6... or 4... Yeah... he did over 9!!! He was trying to play catch up. I had called the doc's office about his legs... HE had called the doc's office from the truck, but we'd heard nothing back...

He gets home and goes in to change clothes... his legs are PURPLE! Looks like somebody beat him with a stick. OHMYGOSH! "I'm okay..." he says, says he... I go in the kitchen and I'm muttering... "Okay, if you're going to kill yourself, just do it... just get it over with, if you're going to die..." "Go ahead and call the doctor if you want to, but I'm NOT going to the hospital!" he says from the living room.

So, I call... I get the on call doc... "Hmmm... I can't imagine... Never heard of anything like that with any of the drugs he's taking... Hmmm..." I tell him, Joe reacts strangely to all of the chemicals... ask about it being a symptom of the hand and foot syndrome. He doesn't "think" so... he's going to read up on stuff and see if he can come up with anything. In the meantime, I've told him about our call in to OUR doc, with no response... I'm ticked... he seems ticked... Must have been, 'cause we no more than hung up and Dr. G called. "What's he doing now?" he says... He knows Joe... knows Joe's weird... I tell him what's going on. He says it IS weird, but doesn't seem to be life threatening, so just watch him... give him some Motrin for swelling (anti-inflammatory)... if it's hurt real bad, or gets worse (?!?!) either come down Tuesday for tests, or come in Wednesday on his lunch hour and let him look at it.

Well, Joe and I did some more reading ourselves... I, Doctor Suze, think it IS the hand and foot syndrome... one of the pamphlets talked about the severe discoloration due to constrictive clothes... heat... sweating... like might come from two pair of tube like socks... two pair of pants... That's my uneducated guess... Anyway, we do the "Motrin" for swelling... lotion up his legs and get his feet us. Seems to help...

THEN... dummy goes to work Tuesday and works... 10 1/2 hours! DUMMY! Comes home and can barely walk. Same as night before... get him in comfy clothes... ibuprofen for the swelling... lotion, and he is out like a trout. Out of the chair and into bed after a little bite to eat and his PM pills.

Wednesday morning... he gets up to pee... he's freezing, he says... check his temp... 101+. Tylenol... Email his coworker... he's going to be late... He can't get woke up... 1 hour, 2 hours... He calls Connie... he's not coming in. We're going to head to the doctor's office as soon as we can get around. I call the office, tell them we're coming in... We get there around 12:30, they take him back pretty quickly... The PA comes in, looks at him... orders labs... and comes back with the Doc. He checks him over... shaking his head... "What ARE you doing NOW?" lol! I think Joe perplexes him. He is NOT textbook, for sure. More labs. HE thinks Vasculitis. The chemicals causing the blood vessels to break down... Okay... could well be... he IS the doctor. Me, myself, and I STILL think it's part of the hand/foot thing. It started with the socks... the pants and belt pushing on his belly... THAT is where the discoloration started. He started wearing suspenders, and the discoloration on his belly is fading. His legs are starting to fade some... Still a LOT of edema... will NOT stay off his feet, or try to find a way to work with his feet up, even tho the Doc "prescribed" that (working with his feet on his desk).

Yesterday, he only put in 5-5 1/2 hours... about the same today... He's not going in until around 8:30... gives him another couple hours of sleep. Sleep is good. I don't know if he'll try to go in tomorrow at all or not. We're going to have a short check.

We've got to sit down this weekend and try to come up with a plan. May need to go ahead and try applying for SSD. It generally takes 6 months for it to go through. I don't know if he can make it another 6 months if this keeps up. And it seems the worse HE is getting, the worse I'm getting.

I have NEVER been a depressed person... Not to say I don't get blue when all of this starts getting to me, but typically, I can maintain a pretty positive outlook. When Les was sick, I belonged to the Hep C message board on WebMD. Met a lot of nice folks in the same, or similar boats. I think I ended up with Hep C overload... tho it was good to be able to talk to, vent to, people who knew where I was coming from. I could bitch and moan about things... compare notes... Some people were really sick, and their ugliness could really come out, but it was like a big Hep C family... I think with Les, tho... we had hope. REAL hope... He was really sick, but he was going to do the transplant and be better. It was a process... it was going to get worse before it would get better. But it WAS going to get better. We were fortunate that when he got put on the transplant list, the Navy put him on the TDRL (some sort of temporary retirement list) which gave us an income while we were awaiting his VA and SSD benefits to kick in. It was tight, and we did eventually have to file a Chapter 13, but we made it without too much todo.

With Joe... I don't know about a cancer support group. I feel like I am consumed with cancer. Cancer is my life. Everywhere I go, everything I do... I can't get away from it. There just is no normal anymore. It's all cancer. I don't have anywhere to go or anything to do to get away from it. Joe goes to work (he's back to driving my truck while the piece of crap beater he bought to drive sits in the driveway... he doesn't want me driving it because he's afraid it'll break down and I'll be stuck), and I'm here at home. I try to stay busy... to not think about things, and usually, I do pretty well. I try to refuse to give in to sadness and sorrow... but it's hard. With Les, we had so much hope. We HAVE hope that Joe will overcome this... that the chemo will knock the cancer back... It was jumping a bit ahead of us again, but in just the last 3 treatments, his markers have come down another 100 points... from 250 to 150. It's about 2 x's what it was before it started going back up... but still better than the 250. We KNOW that with God, anything is possible... God is the Maker of Miracles... He can do anything, and we can do anything within Him. But some things aren't to be, and if it's His will that this is Joe's time... I just don't know what we're going to do when Joe can't work. I don't know if he can go ahead and apply for SSD now and quit working in 6 months, or whenever they approve it. I have to say, SSD IS a good thing, but it also stinks... They make you wait so long... figuring you might get better, or die, then they don't have to pay anything out on you. And if he quits working... there goes his insurance... and we're back to being the welfare people... I just don't know what to do or think anymore. Feeling like I'm beginning not to care anymore...

I sometimes think if we hadn't gone through so much drama and trauma in the past few years thanks to our lovely ex-dil and Daniel... That whole thing just sucked the life out of us. And we were still dealing with that when the cancer came up... Now that's kind of resolved itself, and Josh is in a bit of a pickle... Joe worries over him, but I tell him, Josh has got to make his own way. We'll help him as much as we can, but he has walked into his situation with his eyes wide open, much as Daniel did... and been told about what he's getting into, and he KNOWS it. HE is going to have to work this out. Without tying Joe and I up in it. We did what we could for 7 months, and it was the beginning of the Daniel/Bimbo thing all over again, so we stepped away from that QUICK! God willing, we've got a possibility of him a different job than the one he's working now. Got to get his app finished and get it to my friend's husband... Fingers crossed, he'll start around $14 an hour as an operator. He is going to HAVE to apply himself tho... not working with family anymore... And girl is going to have to get her butt in gear too, soon as he can get her car put back together. Get a REAL job.

Jobs... Lordy...

Well, going to get back to busy here... Chasey boy is coming tomorrow night after our Feb. BD bash... got to get some more stuff put away... Boy love... I can't wait! (*"*)

Monday, February 15, 2010

Just when we were hoping for a break...

We got snow... and the power went out. All thoughts of being able to enjoy it went out the window. Yeah, it was beautiful, and if I could have sat on the porch with my cup of coffee and my blankie and stared at it, and then came back in and gotten warm, well, I'd have loved it more. As it was, the power was out for about 36 hours. Thank goodness our Friendly Neighbors have a propane fireplace. We took the birds and stayed over there Saturday night and yesterday until she and I went down the road and found us a power crew and got them to come fix us back up. Took them all of 5-10 minutes! And we were supposed to have been next on the list Saturday night just before 6, but they got called into town for supper and we somehow got lost in the shuffle before they called it quits around 10PM. ugh!

Anyway, today is back to normal... or as normal as we can be. Joe went to work for the first time in 3 weeks today. Don't know if he'll make a whole day or not, but he went on in at regular time. He's having some serious sides with this new chemo. It is T-totally breaking my heart. We are getting so upside down financially, we're about to have to file bankruptcy. Don't know what else to do. We'll have to get upright on our home equity loan... then just let the rest fly to the wind... Joe may have to file for SS Disability soon. I really don't know how we'll make it on what he'll get. I feel like a boob. I know everybody looks at me thinking I should be working, but between you, me and the doorknob, I've got some issues of my own going on... I'm thinking that maybe if I can get my proverbial "shit" together and get some of my crafting projects done, I may try to open an etsy account or something and sell my stuff there. Between my back, my head, and my wrist, I'm not having a lot of luck with anything nowadays. And worry about Joe is about to take me down to the mat.

I've said it before, and I'll say it again... He is my hero. Goes through so much and really rarely complains. Since he doesn't, I do it for him. We're both so tired... I don't know how much more of this either one of us can take. Physically, financially... we're both about done in.

It probably sounds ugly... and I've had people take me at my worst for saying things, but when we were in the hospital... and I was sitting there looking at Joe... all he was going through... I prayed that if it was his time, that God would just take him and end his suffering. Understand, I don't wish Joe dead. I love him so much, I don't want to go through life without him. But heaven help me, if it's only going to get worse and worse for him. I just can't stand it. It nearly killed me going through everything with Les. I sometimes really doubt myself about going through this with Joe. I think only someone who has walked in your shoes before ever knows exactly what's going on in your heart or mind, in any situation. In the case of quality vs quantity... I just don't know... If we could have more assurance that Joe was going to beat this thing... I'm just almost afraid this new treatment is going to kill him before the cancer would. It just breaks my heart to watch him... and it breaks his heart to have me watch him. He's all the time apologizing for putting me through this (again)... for putting us in dire straits financially... He just keeps on tho. At least with Les, we had a sort of an income while we were waiting for his disability to be approved... and when it was, given that the boys were young yet, I had a check, and they had checks which all gave us more to work with money-wise. Since it's just Joe and I... all we would get is his disability, which isn't much. Almost makes a body lean toward dishonestly... I could divorce him and get my VA benefits back... but even that would take a year (unless one of us wanted to claim the other had been stepping out... hahaha). Again... I'm thinking evil thoughts... Good thing beyond this earth we're not judged by a jury of our peers... God knows my heart tho... and my fears...

Anyway, just wanted to check in and let those who are interested know what's going on... which right now is not much of anything, but...

Now I have got to go write a letter or two, to people I'd rather not have to deal with, but do... Keep the prayers coming... they're needed now as much as ever. Hugs, (*"*)

Saturday, February 6, 2010

We're home!

We've actually been home a couple of days now...

Wednesday morning after the night nurse had come in and done her whole rigamarow... the surgeon's assistant/student did the same... then the day nurse (JUST as his breakfast came in... so it sat there for nearly 30 mins. while she did the same thing the other 2 had done)... THEN the PA...

She asked Joe how he was doing, and he told her. He was MISERABLE... he'd tried for an hour to eat his breakfast, and people kept coming in interrupting. It was now cold again. He wanted to go HOME. People coming in all hours of the night poking and prodding... all throughout the day. Everytime he got his breakfast, lunch, or supper, somebody was coming in to do his vitals... hang meds... check his surgery spots... He just couldn't handle it anymore.

She must have seen he was really getting desperate, 'cause she went back out and checked his labs... came in and looked at his food intake... She said labs and vitals were all good, but the other... I told her if she let me take him home, I could get him to eat. I mean, they'd bring breakfast, and he'd get harassed... lunch, the same... supper, more of the same. Who could eat? When he DID have time and an appetite, there was nothing unless I went down and bought something, and that was getting $$$.

She agreed to cut him loose after she had two more meds hung. YAY! They were going to take two hours. Wah! So, we had to wait for the pharmacy to send the stuff up... then the nurse got lost... Finally got it hung around noon, so we figured by 2:15-2:30, we'd be out of there. Well, they wanted to drain the bags... so that was 2:15... then to get the nurse to come in and disconnect him... pull his needles... 2:30. She called for transport while she was doing that, so I grabbed what I could carry and headed out to find the truck (after nearly 2 weeks, I wasn't sure where I'd parked anymore... LOL!). I got down to the pick up area and called him to let him know I was there... he was still waiting... I made a couple of calls... called him back... they'd just called down again. Another couple of calls... called again... STILL waiting. After 45 mins total, I was about ready to go get a wheelchair and get him myself. I called back up one last time, he said they'd called a 3rd time, but oh, wait... Christine, the cleaning lady, was coming with a wheelchair and a cart in tow. She'd been going by to see if she could get in to clean and saw him sitting there time and again, and she got HOT. She went down to transport and told them they had a guy sitting up there waiting for somebody... what the heck where they doing? One said they were just headed out... the other said their shift was over too... She said she wasn't letting Joe sit there any longer, so she just did their job herself.

She was such a sweetheart the whole time we were there... bright and cheerful every morning she came in to straighten up. When she'd seen me call for linens and the like a couple of times and have to wait for one of the techs or nurses to get to me, she took me out and showed me where everything was.

The lunch lady was a doll too... Every morning, she'd bring me a blueberry muffin with Joe's breakfast. She was also bringing an extra tray most meals, so if I wanted something... tho Joe and I were sharing most of his meals.

Most all of the nurses and techs were really, really nice. We must have been the most fun patients on the ward, 'cause everybody was coming back to hang out with us. LOL! The night Joe spent in ICU, they set me up in a family room down the hall from the cancer ward (THAT was a little spooky, but I was about too tired to care!). When I ran out of clothes, they hooked me up with the washer and dryer down there too. The first night we were back in the ward, the nurse on duty snatched me a cot so that I didn't have to sleep in one of the reclining chairs. I can tell ya'. I'd never have made it all those nights in that recliner.

I hope we blessed as much as we were blessed. Joe was walking, talking inspiration to the staff. We handed out about 25 New Testments to the staff, and a few personal witness testaments too. As stinkin' as it was to have to have gone through all that, God was right there with us... We couldn't have gotten through it otherwise.

I'll tell ya', some moments had both Joe and I shakin' in our shoes. The bloody diarrhea, and then all the infusions... Then the power puking... Joe said he was afraid he wasn't coming home a few times. Me too. That's why I wasn't leaving him. I was too scared... afraid I'd get away, and then get a call.

It's good to be past the worst of that little adventure. He's still on meds... the shunt that Dr. W put in still isn't working 100%. They said he has a lot of air in his tum, as well as some fluid... just taking a bit of time for all of it to work it's way through. That's what some of the meds he's taking are for.

Joe's not planning on heading back to work until Thursday... We've got a check up and possible chemo appointment Wednesday... Until then, we're just working at getting his nutrition back up... and his strength. He's done real good the last couple of days eating and getting around. God willing, by Thursday, he'll be ready to get back to it.

We've been fortunate with Joe's work as well... the company itself hasn't done anything, but the people Joe works with have all donated time... been calling to check on him... I'm not tremendously impressed with the company, but his co-workers are all a great bunch of people. One guy donated a full 3 days of his time off. They don't get a whole lot, so that's pretty major.

Our "friend" at Boeing... not so sure about what's going on there... Since Joe's been working there, he's been saying that he's going to get Joe on direct... It's been over 2 years. Most of those, Joe's been working with a Stage IV cancer diagnosis, going through chemo, all this other stuff... He's been given 100% more work than he started with... totally redid the whole area he works in, and has only been given a $1 an hour raise. To put it nicely, it sucks. Joe gives his all at work. 200%. We've always been good friends with Tony and Au, but that's kind of cooled... I can't be friendly with somebody who dangles a job and more pay in front of Joe's nose like a carrot, and then never comes through.

We're sitting here struggling to pay our bills... going through hell with Joe's health... There are those who could just say the word and Joe would be a Boeing employee, and yet they do nothing. They've all got their big fat salaries... their nice vehicles... big houses... They don't have to worry about being able to pay their electric bills or buying groceries. Every month, we just get further and further behind. If it wasn't for Joe's cancer, I'd have been encouraging him to go elsewhere for work. But when you have a chronic/terminal illness, you don't want to be job hopping... and that would be even if he COULD find another job. Just not a lot of them out there, ya' know? So, we deal with creditors calling, threatening... while the Big Dogs live large. Joe's taken a big load off of them with their jobs, but he gets piddly for it. Shouldn't be so... especially since the company he works for got a raise to give him a bigger raise just 3 months after he started... BS.

Oh well, life goes on... and God goes with us... Just have to keep trusting Him to keep us afloat. (*"*)

Monday, February 1, 2010



i told our oncologist's PA earlier, they have to let joe out so i can take him home just to get him well.

we went from the bloody diarrhea, which they got control of pretty quick... got him down to the 5th floor, and he was feeling perky, and we were hopeful for a short stay.

then he started projectile vomiting stomach bile. that went on for most of a day, then they sent him down for a CT... supposedly showed a blockage in the small intestine... (i say supposedly, as the surgeon said he never thought blockage, but more infection akin to what they found in joe's colon... but the oncologist apparently didn't completely agree, tho he never really said exactly what he thought HE saw. the GI doc was saying blockage, but he was basing his findings on what the surgeon supposedly saw, which in the records say "blockage, per dr. w", but dr. w said no blockage... more like inflammation... ?!?!?) that led to him getting a NG tube through his nose into his stomach for a couple days... pumping the bile out to relieve pressure in his stomach so the "whatever" would hopefully clear. added a 2nd antibiotic...

after another day and a 1/2 (?), nobody had done anything toward trying to figure out what was going on down below, so the surgeon finally ordered an xray... and made the executive decision to pull the tube. everything held... no more vomiting... joe was able to start eating... still some loose, watery stools, but no more bleeding...

we were JUST thinking we'd get turned loose today... and all of the on call docs were in agreement... and last night they came in and said that joe's acid content was off... so they started him on a drip of basically baking soda water... and a couple of tabs that are basically the same (sodium bicarbonate)... that seemed to start working really quickly... and so still hoping... maybe tomorrow?

then this morning, joe was running a bit of a fever... 101 something... he's not been peeing a whole lot, so they draw labs... get a urine sample... maybe a kidney or bladder issue... so they change one of the antibiotics for another... and on we go.

i swear, being in the hospital is nowhere to be if you're sick or well. on top of everything else, joe's fighting a bedsore, the air in here is so dry, my sinuses are dried out... his sinuses are dried out... my nerves are shot...

there is nowhere to go, nothing to do here... we get out and do a few laps a day, but still. otherwise, just basically stuck in this little room. i COULD go home... maybe should go home, but folks come in and talk to joe while he's napping, while i'm out getting lunch, or a drink... and he doesn't remember who, or what was said... i don't not want to know what's going on. having enough trouble getting the drs. to coordinate...

i don't know what we're going to do, either, if he doesn't get out of here soon... he's going to have to have a few days at home to rest and regain himself from this week and 1/2 hospital stay. he's only covered for a few more days of time off (the guys at work have all donated PTO to joe... covering nearly 2 weeks time). his CPS boss said he could go on short term disability... but that's just 65% of his pay. we couldn't live on that for very long. well, more honestly, we just couldn't live on it period. we're running out of money before month already. i'm trying really hard to not feel bitter toward our friend, joe's bigger boss, for all this boeing BS. if they'd have hired joe on, and he was making what he should be, then it might be doable, but not at the measly $16 an hour he's getting now. that whole pay thing has just become a real sore subject with me. a year and 1/2 ago, the company joe works for wheedled out of giving him the raise that he'd been told he was going to get. then tony and eric have been dangling the vought/boeing job thing in front of joe's nose like a carrot, and have yet to come through for him. they could have even pushed the issue on joe's raise, but didn't. we're on a sinking ship, and there is just no sign of a life boat.

i know God is in control... and that we have to live with whatever His will is for us in all of this... but i've been here before, and it's no more pleasant the 2nd time around. it's really hard to watch your husband basically slipping away in front of your very eyes. not good, not good at all. just praying that God will give me grace and understanding... i'm running in short supply right now.

Tuesday, January 26, 2010


Yesterday we were VERY excited to be moved back down to the 5th floor... Moving down was a move up toward getting out of here. Joe's platelets and hemoglobin are still steady, or were at last check... (yep... she just came in and said last CBC she took a bit ago is still holding, so no more bleeding)

He was so excited to be able to eat again yesterday after no food since the tiny bit of toast at home Saturday morning, and a couple of Jellos Saturday night. They gave him some ice cream, Jello, and crackers. His stomach was a bit sore before... but they had said all the platelets they gave him, and the blood... the antibiotics... could make him a bit icky. It's kind of continued to be sore...

Last night, he wasn't real hungry. That was fine... Mom and Dad had come down to visit for a bit... brought me some chili... He nibbled on some rice and mac and cheese.

Early this AM, he got a little queasy... he's thrown up some stomach bile a couple of times. The shunt doesn't seem to be draining the fluid, but his hole from the parencentesis was still open and oozing until last night. The nurses had tried to tape it off, but it was still leaking out... I got him to roll on his opposite side to take the pressure off the hole (otherwise, every time you wiped it dry, it would just ooze back out again), and got it closed off, finally. Dr. W... the surgeon, said that MAY have actually been keeping the shunt from doing it's job. It's based on high pressure/low pressure, and since the hole was there (VERY tiny hole, but a hole nonetheless), it may have kept the pump from pulling. We're gonna' see! I think Dr. W is going to order up some more Lasix... just to help things along as far as getting the fluid out of his tummy.

Dr. W and Gloria, our oncologist's PA, have both been in. They had called the GI doc, and he had ordered an xray, but Dr. W has upgraded it to a CT. Don't know when they're going to take him down... but I just had to pause for a moment... we were going to change his sheets while he was gone, and give him a bath when he got back, but since it may be later, and due to the fact that he just urped and accidentally poured it from the pan down his gown and into the bed... the PCA (? that's what the white board says) changed his bedding while I washed him up.

Without doom and gloom, I think that they're concerned with why he's kind of going South. He was good when we went home Friday... Even after being down here Saturday and the ICU overnight Sunday, yesterday, he was looking really pert and perky. He was pretty good while Mom and Dad were here... just this throwing up thing now... and he's back to the being kind of lethargic. Washing his poor battered bod... he looks like he's just wasting away... everything is skin and bones but that belly. He's had A belly since I've known him, but he was always really built. BIG muscular arms... BIG muscular legs (or as Daniel had put it one time, legs like F'in GI Joe)... 'Bout broke my heart. Like washing up my Papaw after had his heart surgery.

Here I was so thrilled last night... thinking he was doing so much better... THRILLED that our night nurse snagged me a twin size cot to sleep on, so I could ditch the recliner chair. I guess THAT is still good. Looks like we're going to be here awhile longer... so important that I get good rest so I can be able to take care of him. And with all else going on early this AM, we did both get a better night's rest last night. He was up and down a bit, but we were both still snoozing up until around 7:30-8 this AM... that's nearly unheard of.

Keep praying... we're not quite out of the woods yet...

I talked to one of Joe's co-workers just a bit ago... His CPS boss donated 3 days of time for Joe, so he's covered now, for Thursday, Friday, and yesterday... and Connie said she's going to ask the "big dogs" about if there is anything in the PTO pool... that was supposed to have been set up after Joe's hospital stint after his inital cancer surgery. She said for us to not worry about Joe's paycheck for this week. They WILL get it covered. Tony, our friend and one of Joe's Boeing bosses, told me the same thing Sunday night. Joe and I are not to worry about his job, or about a paycheck. It's almost too much to hope for, but we'll see.

So, keep the prayers and good thoughts coming... we're still working our way out of the woods here. Thanks! Susan