more to come after today...
Joe sees the oncologist today. It's been over a month now (well, 4 weeks?) since he got the first go round of beads... They'll be running a CEA to see where his cancer markers stand (they were over 2000 when he had the first implantation). I'm excited, and nervous, to see where we're at!
We thought they were going to do another scan before treating the left lobe, but I reckon' not... Joe got a call last week, and we're set up to head downtown Friday morning for the procedure! I reckon' after 3 or so weeks, THEN they'll do a scan... see what can be seen. I'm thinking a PET, since that seems to be more accurate as far as LIVE tumors.
All of this is really exciting... knowing that there's got to be good results... that the cancer can NOT fight and mutate around the radiation... I can't wait to see how good of results we've gotten so far. Praying, praying... I'll update just as soon as I know something tonight!
Wednesday, April 27, 2011
Saturday, April 9, 2011
Sheesh! Where the heck is the time going?
Well, as I'd said previously, Joe went on March 30th and had his 6 million little radioactive beads planted... Still amazed... 6 million!!! 1/3 the diameter of a human hair!!! AMAZING!!! Came right out from the procedure to recovery, hungry as a bear! We were heading home by about 5:30. A MUCH faster day than the day they did the vein study.
We went to the oncologist's this past Wednesday... Still weren't sure whether he was going to get full chemo with the last available, just the 5-FU, or the Xeloda. I'd called and asked the doc's assistant the week before Joe was implanted, but she never did get back with me. Actually, I emailed her, but still... she never let us know. So... when the doc asked if Joe'd gone back on his Xeloda, I told him that I'd contacted Niki to ask her exactly what he was supposed to be doing, 'cause the PA had talked about infused 5-FU with the other chemo... Dr. S kept saying 5-FU... Xeloda is a pill that creates 5-FU in the body, but it's not compatable with the infused 5-FU in all situations. It was the Xeloda. So Joe got a little later start on it, but he's cookin' with both now... Doc upped the Xeloda to 4 pills twice a day. We'll see if Joe can maintain that. That stuff just eats his hands and feet up!
He doesn't got back for 3 weeks now... we just let everything percolate... When he goes back they'll check his CEA (cancer markers... they'd done them the day of the procedure and they were over 2200, up from a little over a thousand a few weeks before. Hard to imagine we'd ever been all the way down in the 60's!)... I guess he'll get with Dr. S and discuss whether they are going to do another scan (or scans), and determine whether they're going to do the procedure on his left lobe, or just let the Xeloda take care of it. If they do another PET scan, they can see exactly what is live and what isn't. Those things are SOOO cool!
Anyway... that's it for now... We just wait. God willing, all with do what it's made to do and get those tumors DEAD! Since we're not running hither and yon, hopefully Joe will be able to maintain at work and actually get a few full weeks in. Those 3-4 day weeks have just about killed us! He's had some days where he's come home wiped out, but doesn't just fall out when he hits his chair. He's more sociable. That's a good thing for me! Not necessarily complaining, but considering that I'm home alone all day, then he comes home, sits down and basically passes out until bedtime... It can get kind of lonely! It's been nice to have him come home and chat with me... to be able to watch TV together and him be knowing what's going on... I love my husband. I've missed him... the whole him...
Aside from all of that... we're just waiting for grandbaby 5's arrival. She's due May 8th, but they've told her basically anytime in the next 2-6 weeks. Stacy is hoping that Ashley goes around her due date... Chase's birthday is the 14th, and she's planning him a big outside bash. She doesn't want to have to cancel it while we all troop off to the hospital. LOL!
Keep praying that things are on the right track, and I'll update you again when I know more...
We went to the oncologist's this past Wednesday... Still weren't sure whether he was going to get full chemo with the last available, just the 5-FU, or the Xeloda. I'd called and asked the doc's assistant the week before Joe was implanted, but she never did get back with me. Actually, I emailed her, but still... she never let us know. So... when the doc asked if Joe'd gone back on his Xeloda, I told him that I'd contacted Niki to ask her exactly what he was supposed to be doing, 'cause the PA had talked about infused 5-FU with the other chemo... Dr. S kept saying 5-FU... Xeloda is a pill that creates 5-FU in the body, but it's not compatable with the infused 5-FU in all situations. It was the Xeloda. So Joe got a little later start on it, but he's cookin' with both now... Doc upped the Xeloda to 4 pills twice a day. We'll see if Joe can maintain that. That stuff just eats his hands and feet up!
He doesn't got back for 3 weeks now... we just let everything percolate... When he goes back they'll check his CEA (cancer markers... they'd done them the day of the procedure and they were over 2200, up from a little over a thousand a few weeks before. Hard to imagine we'd ever been all the way down in the 60's!)... I guess he'll get with Dr. S and discuss whether they are going to do another scan (or scans), and determine whether they're going to do the procedure on his left lobe, or just let the Xeloda take care of it. If they do another PET scan, they can see exactly what is live and what isn't. Those things are SOOO cool!
Anyway... that's it for now... We just wait. God willing, all with do what it's made to do and get those tumors DEAD! Since we're not running hither and yon, hopefully Joe will be able to maintain at work and actually get a few full weeks in. Those 3-4 day weeks have just about killed us! He's had some days where he's come home wiped out, but doesn't just fall out when he hits his chair. He's more sociable. That's a good thing for me! Not necessarily complaining, but considering that I'm home alone all day, then he comes home, sits down and basically passes out until bedtime... It can get kind of lonely! It's been nice to have him come home and chat with me... to be able to watch TV together and him be knowing what's going on... I love my husband. I've missed him... the whole him...
Aside from all of that... we're just waiting for grandbaby 5's arrival. She's due May 8th, but they've told her basically anytime in the next 2-6 weeks. Stacy is hoping that Ashley goes around her due date... Chase's birthday is the 14th, and she's planning him a big outside bash. She doesn't want to have to cancel it while we all troop off to the hospital. LOL!
Keep praying that things are on the right track, and I'll update you again when I know more...
Wednesday, March 23, 2011
Okay!!!
Here we go... Last post, I think we were waiting to see what Joe's options were going to be as to treatment, as he's pretty much run through all but two. There is a fairly new treatment... uses microscopic radioactive beads implanted in the liver to fry the tumors... and one last old chemo... We were on pins and needles for a few days, waiting to see if Joe was going to be a candidate for the radiation... AND HE IS!!!
We went Monday for part 1 of the procedure... a vein study. They went up through his artery in his groin and injected some dye and a tad bit of radiation to map out his veins... Some of them have to be blocked with coils to keep the beads from traveling to other organs (such as the lungs), which could cause issues. They placed 5 coils.
Next Wednesday, the 30th of March, we go back down and they do the actual radiation procedure... Approximately 6 MILLION little beads, smaller than a cell, will be put into Joe's liver. These beads carry 40 times more radiation than they could give externally... and they are geared to attack JUST the cancer tumors, so the healthy parts of his liver will be unharmed for the most part. Wednesday night, I'll be back on the other side of the bed... said the chance of me having any problems from it are slim to none, but they just recommend that I not sleep on the side that they've treated.
Just to keep the chances of overtaxing his liver down, they'll do the right side first... it's the larger lobe, and where he has more tumors concentrated. After those are settled in, we'll go back in 2-3 weeks and get the left side treated.
That PET scan was pretty cool! They'd never done one of those on him before. And we've never been shown any of the scans... Generally the radiologist reads them and just calls the oncologist, but since Dr. Smith IS a radiologist, he took us through them on the computer. So neat how they can see everything... bottom to top, top to bottom, left and right, right and left... He showed us Joe's liver all the way through.
They've always talked about his tumor load... and innumerable tumors, which doesn't sound good at all, but we were actually pleased to find that Joe's tumor load is at about 30%... That means that 70% of his liver is tumor free! The oncologist was amazed that Joe's liver function is so good, all things considered, but then he may not actually KNOW what Joe's tumor load is either... he doesn't really deal in that.
I guess the only real downside is that the radiologist wants Joe to do some chemo too, along with the radiation... And it being the old chemo, chances are, it could cause Joe some grief with nausea... He's never had issues with nausea before, but that's been because all of the treatments have been newer ones, with less adverse side effects. God willing, Joe will do his usual and just groove right along! He's going back on the Xeloda again too, which is what makes such a mess of his hands and feet... they were JUST getting back to normal! Ugh! He's still got his "Never say Die" attitude tho! Complete confidence that the Lord is going to heal him. He faded a bit here a few weeks back... was wearing out... The hope for this new treatment has bolstered him up again.
I will admit to still having a bit of fear... The good thing with the radiation and chemo vs just the chemo... the cancer cells can't mutate against the radiation. With the one-two punch, God willing, the cancer won't stand a chance. I'll have his back, whatever happens... and I know y'all have our backs as well...
Before I sign off here, I just wanted to add that I'm still saying prayers for Julie's sister... and for Terri's family who've been facing cancer as well... I hope and pray that all come through things with flying colors!
Okay... got a baby blanket to finish up... Have I told you that we're expecting another new grandbaby? We suspected, but found out for sure just after Christmas... Another girl... Due May 8th... This will be our 5th in 7 years... All girls except for Peanut... he still gets to be my favoritest boy in the world ever! I have a sweet spot for him... can you tell? LOL!
Hugs and lots of smiles!!!
We went Monday for part 1 of the procedure... a vein study. They went up through his artery in his groin and injected some dye and a tad bit of radiation to map out his veins... Some of them have to be blocked with coils to keep the beads from traveling to other organs (such as the lungs), which could cause issues. They placed 5 coils.
Next Wednesday, the 30th of March, we go back down and they do the actual radiation procedure... Approximately 6 MILLION little beads, smaller than a cell, will be put into Joe's liver. These beads carry 40 times more radiation than they could give externally... and they are geared to attack JUST the cancer tumors, so the healthy parts of his liver will be unharmed for the most part. Wednesday night, I'll be back on the other side of the bed... said the chance of me having any problems from it are slim to none, but they just recommend that I not sleep on the side that they've treated.
Just to keep the chances of overtaxing his liver down, they'll do the right side first... it's the larger lobe, and where he has more tumors concentrated. After those are settled in, we'll go back in 2-3 weeks and get the left side treated.
That PET scan was pretty cool! They'd never done one of those on him before. And we've never been shown any of the scans... Generally the radiologist reads them and just calls the oncologist, but since Dr. Smith IS a radiologist, he took us through them on the computer. So neat how they can see everything... bottom to top, top to bottom, left and right, right and left... He showed us Joe's liver all the way through.
They've always talked about his tumor load... and innumerable tumors, which doesn't sound good at all, but we were actually pleased to find that Joe's tumor load is at about 30%... That means that 70% of his liver is tumor free! The oncologist was amazed that Joe's liver function is so good, all things considered, but then he may not actually KNOW what Joe's tumor load is either... he doesn't really deal in that.
I guess the only real downside is that the radiologist wants Joe to do some chemo too, along with the radiation... And it being the old chemo, chances are, it could cause Joe some grief with nausea... He's never had issues with nausea before, but that's been because all of the treatments have been newer ones, with less adverse side effects. God willing, Joe will do his usual and just groove right along! He's going back on the Xeloda again too, which is what makes such a mess of his hands and feet... they were JUST getting back to normal! Ugh! He's still got his "Never say Die" attitude tho! Complete confidence that the Lord is going to heal him. He faded a bit here a few weeks back... was wearing out... The hope for this new treatment has bolstered him up again.
I will admit to still having a bit of fear... The good thing with the radiation and chemo vs just the chemo... the cancer cells can't mutate against the radiation. With the one-two punch, God willing, the cancer won't stand a chance. I'll have his back, whatever happens... and I know y'all have our backs as well...
Before I sign off here, I just wanted to add that I'm still saying prayers for Julie's sister... and for Terri's family who've been facing cancer as well... I hope and pray that all come through things with flying colors!
Okay... got a baby blanket to finish up... Have I told you that we're expecting another new grandbaby? We suspected, but found out for sure just after Christmas... Another girl... Due May 8th... This will be our 5th in 7 years... All girls except for Peanut... he still gets to be my favoritest boy in the world ever! I have a sweet spot for him... can you tell? LOL!
Hugs and lots of smiles!!!
Wednesday, March 2, 2011
Ugh!
Well, no treatment today... We sat visiting with the PA long enough for Joe's CEA to come back. Over 1000. They scheduled a PET scan and a CTs for next Tuesday. My heart is kind of in my throat right now. I know there are still options, but Joe's wearing out. Me too. I know God's on top of things. I KNOW He's got this covered. One way or the other. Just pray we have what it takes to let this thing run it's course.
Things have been busy...
so I've not updated for a bit... Getting ready to head out to treatment here shortly, so thought I'd bring anybody curious up to date.
After a wonderful Christmas, we got the bomb dropped the next week about Joe's #'s going back up. yay. A CT later, the decision was made to switch his treatments... again... So... we're on #4. Vectibix. He had one cycle... 2 treatments... and they ran another CEA. From nearly 400 to over 700! WTHECK??? Apparently, that's what the doc is thinking too. The CT and the CEA usually correspond with each other... The CT looked really good, despite a couple of BB sized new growths. More was shrinking/dying off than was new. Doc said he wasn't worried about the BB's... he just doesn't understand the CEA being so high. This is the highest it's been since we started in October of '08 when the CEA went from over 3500 down to 315 with just a couple of treatments with the Folfox treatment.
Our last visit we actually SAW the doc, not the PA... He said we were going to give it another cycle... 2 more treatments... then run the CEA, AGAIN! Well, today is #2 of the 2nd cycle. Next visit, they'll do the CEA and see where the #'s are. IF they're going up still yet, he's going to order a PET and CTs to see what is happening inside. Depending on what those show... we may be on to option #5. Radiation.
There is a treatment that was actually developed for treating liver cancer... but what I read was that it actually shows better results in treating colon cancer that has matastisized into the liver. They shoot the liver up with millions of microscopic beads of radiation (not the clinical term, but you get the gist). The beads work their way into the blood vessels that supply the tumors and knock them out... kill 'em... wipe 'em off the face of the earth... hopefully... They do this... I think Joe said, every 3 months and check it?
If that does the trick in shrinking and killing off more of the tumors, then they will likely go back with a bit more chemo to irradicate any stray cancer cells possibly floating around in the blood stream.
That's the plan for the cancer part of our lives... I'll come back later to update on the good parts of life... I have to run get ready right now, or we'll be risking a ticket on our way to the Cancer Center... See ya' later!
After a wonderful Christmas, we got the bomb dropped the next week about Joe's #'s going back up. yay. A CT later, the decision was made to switch his treatments... again... So... we're on #4. Vectibix. He had one cycle... 2 treatments... and they ran another CEA. From nearly 400 to over 700! WTHECK??? Apparently, that's what the doc is thinking too. The CT and the CEA usually correspond with each other... The CT looked really good, despite a couple of BB sized new growths. More was shrinking/dying off than was new. Doc said he wasn't worried about the BB's... he just doesn't understand the CEA being so high. This is the highest it's been since we started in October of '08 when the CEA went from over 3500 down to 315 with just a couple of treatments with the Folfox treatment.
Our last visit we actually SAW the doc, not the PA... He said we were going to give it another cycle... 2 more treatments... then run the CEA, AGAIN! Well, today is #2 of the 2nd cycle. Next visit, they'll do the CEA and see where the #'s are. IF they're going up still yet, he's going to order a PET and CTs to see what is happening inside. Depending on what those show... we may be on to option #5. Radiation.
There is a treatment that was actually developed for treating liver cancer... but what I read was that it actually shows better results in treating colon cancer that has matastisized into the liver. They shoot the liver up with millions of microscopic beads of radiation (not the clinical term, but you get the gist). The beads work their way into the blood vessels that supply the tumors and knock them out... kill 'em... wipe 'em off the face of the earth... hopefully... They do this... I think Joe said, every 3 months and check it?
If that does the trick in shrinking and killing off more of the tumors, then they will likely go back with a bit more chemo to irradicate any stray cancer cells possibly floating around in the blood stream.
That's the plan for the cancer part of our lives... I'll come back later to update on the good parts of life... I have to run get ready right now, or we'll be risking a ticket on our way to the Cancer Center... See ya' later!
Monday, January 31, 2011
Well, it's been a month + since I've been back here...
Things have been busy... took me a week or two after Christmas to finish Christmas up... I was running a bit behind... Then I discovered a new craft. Button jewelry... FUN!!! Made a set for my niece's birthday... granddaughter #1's birthday, and two necklaces and a bracelet and earrings for sale. Just have to find a buyer, or they'll end up gifted down the road, I guess. Fun to make tho!
Unfortunately, just after Christmas, our Happy Cancer Bubble got burst... or maybe just pricked... They ran Joe's CEA at our December 29th visit... Oh... we were sooo hopeful! Just before Joe was finished with his treatment, we finally tracked down the results... 390? 490? I can't even remember at this point (I'm thinking it was near 500, so musta' been the 490)... Doesn't matter, really. They were going the wrong way! We'd been a 117 or something (can you tell I'm losing my mind? haha...). Well, we walked to the exam part of the Center, and saw our doc standing there... Joe told him about the new #'s. He was surprised... concerned... Said he'd look into it before our next appointment. Well, this is where I, again, get torqued... They run these labs every two weeks. If WE know what they are before we leave, THEY can know what they are too. If they're looking at something like his cancer markers, then it seems to me that they could find/take the time before we're back in two weeks to LOOK at the results and have a plan in hand BEFORE Joe takes a day off work and we drive down there for treatment... Only to be told what we already knew. CEA was high... not going to treat today... Gotta' get you set up for a CT, then come back next week and we'll proceed. CAAA-RAP! In two weeks, Doc or the PA should have looked at the results... called and said, "CEA is up, let's get you in for a CT..." Joe would have gone and had it done BEFORE the two weeks was up, and when we went in, we'd have been set and ready to go. Instead, it puts us back a week...
Our lives revolve around Joe's cancer and treatments. Anything and everything that we do, and don't do, depends on Joe's treatments, how he's feeling... He misses work due to his side effects sometimes... those days have to be made up, or we're out $. Add in a wasted day and wasted gas going down there, and we're out more $$. We get ourselves set in a routine that we adjust everything else to, and then because they can't take a few minutes in a two week period to look at Joe's #'s... We're all upside down. They just can't seem to get that through their heads. Oh well...
So, Joe had the CT. While it still showed some shrinkage in the tumors, there also appeared to be a couple new growths. I guess they error on the side of caution, assuming the new growths are malignant, so... It seems that the treatment we started in June/July has stalled out... too... So, we're on treatment #4. Vectibix. I have always been anxious with starting a new course of action, but now more than ever before, because it's looking like we're running out of options. Every treatment thus far has started out like gangbusters... getting in there and kicking cancer butt... CEA going down rapidly in the first few months... then blah. Knowing that we're nearing the end of the road in things they can do... I'm just all over the place with this. I am so nervous, edgy... stressed to the max. I can't focus, can't function. I know Joe's worried about how he'll do with the new treatment, but he knows that I'm spazzing out, even tho I try to keep it under wraps around him... I'm just holding my breath, hoping against hope. In our 3rd year of treatment here, and my nerves have just stretched so tightly... I'm really about to snap. I try not to dwell, but it's hard when it's just always right there... riiight there!
I'm so thankful that I've had this time with Joe that I might not have had otherwise... but it's so hard... all of this dragging out... getting our hopes up, and then... I'm just slap worn out. I really try hard to maintain a happy, smiling facade of normalacy, but sometimes my "happy" slips.
I've got my neighbor calling over here... I KNOW she has depression issues... she gets depressed over anything and everything... I've gotten to where I have to avoid her, because it's all about her, her, her. I know that's the way her mind works, and I try to knock her out of it sometimes, just by trying to draw a parallel between her life and mine, and show her, she really has nothing to feel depressed about. Yeah, it's bad for everybody right now, but she's so blessed in so many ways. Not that I'd trade my life with Joe for hers, but sometimes, it'd be nice to only have to deal with the things she has to deal with. Some people refuse to see how good they've got it, even when they have others suffering all around.
Well, now to go and try to occupy my mind with other things... Thank goodness for laundry and dishes and dirty shoes! LOL! Hugs, Susan
Unfortunately, just after Christmas, our Happy Cancer Bubble got burst... or maybe just pricked... They ran Joe's CEA at our December 29th visit... Oh... we were sooo hopeful! Just before Joe was finished with his treatment, we finally tracked down the results... 390? 490? I can't even remember at this point (I'm thinking it was near 500, so musta' been the 490)... Doesn't matter, really. They were going the wrong way! We'd been a 117 or something (can you tell I'm losing my mind? haha...). Well, we walked to the exam part of the Center, and saw our doc standing there... Joe told him about the new #'s. He was surprised... concerned... Said he'd look into it before our next appointment. Well, this is where I, again, get torqued... They run these labs every two weeks. If WE know what they are before we leave, THEY can know what they are too. If they're looking at something like his cancer markers, then it seems to me that they could find/take the time before we're back in two weeks to LOOK at the results and have a plan in hand BEFORE Joe takes a day off work and we drive down there for treatment... Only to be told what we already knew. CEA was high... not going to treat today... Gotta' get you set up for a CT, then come back next week and we'll proceed. CAAA-RAP! In two weeks, Doc or the PA should have looked at the results... called and said, "CEA is up, let's get you in for a CT..." Joe would have gone and had it done BEFORE the two weeks was up, and when we went in, we'd have been set and ready to go. Instead, it puts us back a week...
Our lives revolve around Joe's cancer and treatments. Anything and everything that we do, and don't do, depends on Joe's treatments, how he's feeling... He misses work due to his side effects sometimes... those days have to be made up, or we're out $. Add in a wasted day and wasted gas going down there, and we're out more $$. We get ourselves set in a routine that we adjust everything else to, and then because they can't take a few minutes in a two week period to look at Joe's #'s... We're all upside down. They just can't seem to get that through their heads. Oh well...
So, Joe had the CT. While it still showed some shrinkage in the tumors, there also appeared to be a couple new growths. I guess they error on the side of caution, assuming the new growths are malignant, so... It seems that the treatment we started in June/July has stalled out... too... So, we're on treatment #4. Vectibix. I have always been anxious with starting a new course of action, but now more than ever before, because it's looking like we're running out of options. Every treatment thus far has started out like gangbusters... getting in there and kicking cancer butt... CEA going down rapidly in the first few months... then blah. Knowing that we're nearing the end of the road in things they can do... I'm just all over the place with this. I am so nervous, edgy... stressed to the max. I can't focus, can't function. I know Joe's worried about how he'll do with the new treatment, but he knows that I'm spazzing out, even tho I try to keep it under wraps around him... I'm just holding my breath, hoping against hope. In our 3rd year of treatment here, and my nerves have just stretched so tightly... I'm really about to snap. I try not to dwell, but it's hard when it's just always right there... riiight there!
I'm so thankful that I've had this time with Joe that I might not have had otherwise... but it's so hard... all of this dragging out... getting our hopes up, and then... I'm just slap worn out. I really try hard to maintain a happy, smiling facade of normalacy, but sometimes my "happy" slips.
I've got my neighbor calling over here... I KNOW she has depression issues... she gets depressed over anything and everything... I've gotten to where I have to avoid her, because it's all about her, her, her. I know that's the way her mind works, and I try to knock her out of it sometimes, just by trying to draw a parallel between her life and mine, and show her, she really has nothing to feel depressed about. Yeah, it's bad for everybody right now, but she's so blessed in so many ways. Not that I'd trade my life with Joe for hers, but sometimes, it'd be nice to only have to deal with the things she has to deal with. Some people refuse to see how good they've got it, even when they have others suffering all around.
Well, now to go and try to occupy my mind with other things... Thank goodness for laundry and dishes and dirty shoes! LOL! Hugs, Susan
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
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
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!!! (*"*)
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
Hey!!!
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! (*"*)
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
GOOD NEWS ALERT!!!
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!!! (*"*)
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 (*"*)
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! (*"*)
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
童祖如童祖如
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! (*"*)
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.
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. (*"*)
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
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... (*"*)
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