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. (*"*)
Friday, June 25, 2010
Tuesday, June 22, 2010
Sorry...
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. (*"*)
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. (*"*)
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. (*"*)
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... (*"*)
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... (*"*)
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.
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.
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