Any updates on our Craig? Update posted by Craig!
Thinking about Craig every day and hoping to see him pop in. Anyone know how he is, if the pain is under control?
Comments
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Hey Jen
Pain is out of control still every second for the last sixteen months.....pretty incredible stamina and endurance. Still giving to the trial but so far they have abandoned my requests for another s surgery. Today I met with trial doctor and hes talking to someone responsible in trial to stick up for me and say i need treatment. I gave freely to the trial and risked and now need help and he came here to help patients not hinder them. we'll seenwhat he comes up with.
That's what Santa to slip under the tree.......a surgery that will help me to points untaken. I look to maybe be able to do an eight or sixteen. I'm just hanging on and pushing myself where i can or have to. Things are so hard to do right now. Appts aremjust murder but they get me to a bed when I'm there.
Still in chemo.......doing avastin, lecuovoron, flouracil bolus, and 46-hour pump. Three bad reactions of oxy put me into life saving interventions all three times. Had the nurses and even main nurse scared to death. You could see the looks in their eyes....I'll never forget.
CEA is dropping....around 120 I think. Growth appears stable at this time so that's good for now. But ultimately I know this path is a short walk. I've run through most of the available drugs we use...we have so few. Regofenarib or however pronounced plus that cancer trial would be what I got left.
Kinda scary, huh?
Really glad you have not forgotten about me and took the time to post......we're sorta joined at the hip you know:)
Hospital appts are my social life these days.....otherwise mostly tied to bed....car rides are difficult as well but I just suck it up.
I can't eat anymore....know the old saying "what goes in must come out? Just cannot process anymore. It's been very difficult. I nibble and drink water and some chocolate milk to stay alive. I'm about 152 lbs. now........size 31 waist and medium shirts. I can fit into anything and look great in anything......what a great feeling......110 lbs lost but i'm a new man. But I miss food but it's not totally necessary to live. Our society gravitates around food and it's the currency we run our lives aroind.
It's amazing what cancer has taken from me this time:(
I'm lonely alot but often times not up for visitation....such a cruel side effect of the disease.
I just want some aspects of my life to return. I was cruising with the mag article and was hoping I would be clear but cancer changed that for us all. What I really miss is helping folks and interacting with you all here. That's one of my regrets but I'm fighting to try and return. Most days are so painful though.
If they won't let me back on trial drug I may be forced to have the inter-catheral pump installed this year. Big decision.
Any time when I feel "better" I try and push as far as I can go.
For example. all my wardrobe was 2x and I looked terrible wearing them. So finally pushed hard enough to shop for something to wrap around the new skinny me:)
I found some good old fashioned Levi's blue jeans....it's bee years and oh they make me look so good. And we got a pair of sweatpants and top that fits it. So I look much better and healthier with clothes that are tailored to your size. I noticed the stock of smaller sizes were in short supply whereas the bigger skzes had more quantity.
I can see clearly now how the girth of America has expanded in correlation with this trend. Have you noticed the GROSS combinations the food establishment has come up with these days? It's truly disgusting and unnhealthy....doesn't even look appetizing does it?
I'm enjoying football this year....Longhorns and Cowboys. TV is my best friend and mostly all I got. Enjoy the History channel...Pawn Stars, American Pickers, and Counting Cars are a few that I enjoy. I've caught a few movies that have been good and some downright terrifying.
All in all I'm trying my best everyday. I've got alot of issues and I just fight them. Doing my best to stay out of the hospital. Very grateful that we can still stay in our home...that's a Godsend. Finances have been a struggle since I lost my job.....and of course Life's breakdowns always occur when you're down as there have been plenty of them to say the least.
It's like they get together and say 'break' at the same time:)
I'm still alive though and fighting to find some kind of semblance of the life that was stripped away from me.
Where o'where is it?
I've just got to get better somehow, you know?
Take care, Jen and thanks much.
Big hugs!
-Craig
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Awwww, Craig, it is so goodSundanceh said:Hey Jen
Pain is out of control still every second for the last sixteen months.....pretty incredible stamina and endurance. Still giving to the trial but so far they have abandoned my requests for another s surgery. Today I met with trial doctor and hes talking to someone responsible in trial to stick up for me and say i need treatment. I gave freely to the trial and risked and now need help and he came here to help patients not hinder them. we'll seenwhat he comes up with.
That's what Santa to slip under the tree.......a surgery that will help me to points untaken. I look to maybe be able to do an eight or sixteen. I'm just hanging on and pushing myself where i can or have to. Things are so hard to do right now. Appts aremjust murder but they get me to a bed when I'm there.
Still in chemo.......doing avastin, lecuovoron, flouracil bolus, and 46-hour pump. Three bad reactions of oxy put me into life saving interventions all three times. Had the nurses and even main nurse scared to death. You could see the looks in their eyes....I'll never forget.
CEA is dropping....around 120 I think. Growth appears stable at this time so that's good for now. But ultimately I know this path is a short walk. I've run through most of the available drugs we use...we have so few. Regofenarib or however pronounced plus that cancer trial would be what I got left.
Kinda scary, huh?
Really glad you have not forgotten about me and took the time to post......we're sorta joined at the hip you know:)
Hospital appts are my social life these days.....otherwise mostly tied to bed....car rides are difficult as well but I just suck it up.
I can't eat anymore....know the old saying "what goes in must come out? Just cannot process anymore. It's been very difficult. I nibble and drink water and some chocolate milk to stay alive. I'm about 152 lbs. now........size 31 waist and medium shirts. I can fit into anything and look great in anything......what a great feeling......110 lbs lost but i'm a new man. But I miss food but it's not totally necessary to live. Our society gravitates around food and it's the currency we run our lives aroind.
It's amazing what cancer has taken from me this time:(
I'm lonely alot but often times not up for visitation....such a cruel side effect of the disease.
I just want some aspects of my life to return. I was cruising with the mag article and was hoping I would be clear but cancer changed that for us all. What I really miss is helping folks and interacting with you all here. That's one of my regrets but I'm fighting to try and return. Most days are so painful though.
If they won't let me back on trial drug I may be forced to have the inter-catheral pump installed this year. Big decision.
Any time when I feel "better" I try and push as far as I can go.
For example. all my wardrobe was 2x and I looked terrible wearing them. So finally pushed hard enough to shop for something to wrap around the new skinny me:)
I found some good old fashioned Levi's blue jeans....it's bee years and oh they make me look so good. And we got a pair of sweatpants and top that fits it. So I look much better and healthier with clothes that are tailored to your size. I noticed the stock of smaller sizes were in short supply whereas the bigger skzes had more quantity.
I can see clearly now how the girth of America has expanded in correlation with this trend. Have you noticed the GROSS combinations the food establishment has come up with these days? It's truly disgusting and unnhealthy....doesn't even look appetizing does it?
I'm enjoying football this year....Longhorns and Cowboys. TV is my best friend and mostly all I got. Enjoy the History channel...Pawn Stars, American Pickers, and Counting Cars are a few that I enjoy. I've caught a few movies that have been good and some downright terrifying.
All in all I'm trying my best everyday. I've got alot of issues and I just fight them. Doing my best to stay out of the hospital. Very grateful that we can still stay in our home...that's a Godsend. Finances have been a struggle since I lost my job.....and of course Life's breakdowns always occur when you're down as there have been plenty of them to say the least.
It's like they get together and say 'break' at the same time:)
I'm still alive though and fighting to find some kind of semblance of the life that was stripped away from me.
Where o'where is it?
I've just got to get better somehow, you know?
Take care, Jen and thanks much.
Big hugs!
-Craig
Awwww, Craig, it is so good to see you on the board!! Been thinking of you!
I am very sad to hear you have to be in such pain every day! There has got to be something someone can do to ease things for you! I so hope you are able to get some relief soon! Are you able to receive palliative care? If so, is that at all helpful?
I know exactly that lonlines you refer to, I hate it. It is an isolation that is hard to describe to people. But, I know you know you are not alone and always have us?!
Have you ever tried either instant carnation breakfast drink or ovaltine? Sometimes I throw that in a blender with a banana, milk, and ice ... Makes a nice treat.
I will be keeping you close in thoughts!
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Forget about you? NotSundanceh said:Hey Jen
Pain is out of control still every second for the last sixteen months.....pretty incredible stamina and endurance. Still giving to the trial but so far they have abandoned my requests for another s surgery. Today I met with trial doctor and hes talking to someone responsible in trial to stick up for me and say i need treatment. I gave freely to the trial and risked and now need help and he came here to help patients not hinder them. we'll seenwhat he comes up with.
That's what Santa to slip under the tree.......a surgery that will help me to points untaken. I look to maybe be able to do an eight or sixteen. I'm just hanging on and pushing myself where i can or have to. Things are so hard to do right now. Appts aremjust murder but they get me to a bed when I'm there.
Still in chemo.......doing avastin, lecuovoron, flouracil bolus, and 46-hour pump. Three bad reactions of oxy put me into life saving interventions all three times. Had the nurses and even main nurse scared to death. You could see the looks in their eyes....I'll never forget.
CEA is dropping....around 120 I think. Growth appears stable at this time so that's good for now. But ultimately I know this path is a short walk. I've run through most of the available drugs we use...we have so few. Regofenarib or however pronounced plus that cancer trial would be what I got left.
Kinda scary, huh?
Really glad you have not forgotten about me and took the time to post......we're sorta joined at the hip you know:)
Hospital appts are my social life these days.....otherwise mostly tied to bed....car rides are difficult as well but I just suck it up.
I can't eat anymore....know the old saying "what goes in must come out? Just cannot process anymore. It's been very difficult. I nibble and drink water and some chocolate milk to stay alive. I'm about 152 lbs. now........size 31 waist and medium shirts. I can fit into anything and look great in anything......what a great feeling......110 lbs lost but i'm a new man. But I miss food but it's not totally necessary to live. Our society gravitates around food and it's the currency we run our lives aroind.
It's amazing what cancer has taken from me this time:(
I'm lonely alot but often times not up for visitation....such a cruel side effect of the disease.
I just want some aspects of my life to return. I was cruising with the mag article and was hoping I would be clear but cancer changed that for us all. What I really miss is helping folks and interacting with you all here. That's one of my regrets but I'm fighting to try and return. Most days are so painful though.
If they won't let me back on trial drug I may be forced to have the inter-catheral pump installed this year. Big decision.
Any time when I feel "better" I try and push as far as I can go.
For example. all my wardrobe was 2x and I looked terrible wearing them. So finally pushed hard enough to shop for something to wrap around the new skinny me:)
I found some good old fashioned Levi's blue jeans....it's bee years and oh they make me look so good. And we got a pair of sweatpants and top that fits it. So I look much better and healthier with clothes that are tailored to your size. I noticed the stock of smaller sizes were in short supply whereas the bigger skzes had more quantity.
I can see clearly now how the girth of America has expanded in correlation with this trend. Have you noticed the GROSS combinations the food establishment has come up with these days? It's truly disgusting and unnhealthy....doesn't even look appetizing does it?
I'm enjoying football this year....Longhorns and Cowboys. TV is my best friend and mostly all I got. Enjoy the History channel...Pawn Stars, American Pickers, and Counting Cars are a few that I enjoy. I've caught a few movies that have been good and some downright terrifying.
All in all I'm trying my best everyday. I've got alot of issues and I just fight them. Doing my best to stay out of the hospital. Very grateful that we can still stay in our home...that's a Godsend. Finances have been a struggle since I lost my job.....and of course Life's breakdowns always occur when you're down as there have been plenty of them to say the least.
It's like they get together and say 'break' at the same time:)
I'm still alive though and fighting to find some kind of semblance of the life that was stripped away from me.
Where o'where is it?
I've just got to get better somehow, you know?
Take care, Jen and thanks much.
Big hugs!
-Craig
Forget about you? Not possible! I am so sorry you continue to struggle. You need a break already.
Those shows you are watching - those got my husband through his hospital stay! Oh and Storage Wars and Duck Dynasty too
Are you getting help from your neighbors or community? Dinners from friends were a Godsend...financially and otherwise. Don't be afraid to ask for help. I was lucky that I didn't have to ask, but people really do want to help. It's hard to swallow your pride but as a friend told us, we were doing our friends and community a disservice by not letting them help.
You are the same size as my 14 year old - he's skinny. But you are right, we do let our lives revolve around food a little too much
But you need to eat what and when you can! Can you do milkshakes with protein? Nutrition is more important than I really realized. My mom recently passed away, really due to poor nutrition that resulted from her surgeries and medical conditions, but it is scary how quickly things deteriorated for her when she just didn't want to eat. Please try to get your nutrients - it is important. Thank you for updating us. Know that we are thinking of you often!
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Hey Craig, Good to see youSundanceh said:Hey Jen
Pain is out of control still every second for the last sixteen months.....pretty incredible stamina and endurance. Still giving to the trial but so far they have abandoned my requests for another s surgery. Today I met with trial doctor and hes talking to someone responsible in trial to stick up for me and say i need treatment. I gave freely to the trial and risked and now need help and he came here to help patients not hinder them. we'll seenwhat he comes up with.
That's what Santa to slip under the tree.......a surgery that will help me to points untaken. I look to maybe be able to do an eight or sixteen. I'm just hanging on and pushing myself where i can or have to. Things are so hard to do right now. Appts aremjust murder but they get me to a bed when I'm there.
Still in chemo.......doing avastin, lecuovoron, flouracil bolus, and 46-hour pump. Three bad reactions of oxy put me into life saving interventions all three times. Had the nurses and even main nurse scared to death. You could see the looks in their eyes....I'll never forget.
CEA is dropping....around 120 I think. Growth appears stable at this time so that's good for now. But ultimately I know this path is a short walk. I've run through most of the available drugs we use...we have so few. Regofenarib or however pronounced plus that cancer trial would be what I got left.
Kinda scary, huh?
Really glad you have not forgotten about me and took the time to post......we're sorta joined at the hip you know:)
Hospital appts are my social life these days.....otherwise mostly tied to bed....car rides are difficult as well but I just suck it up.
I can't eat anymore....know the old saying "what goes in must come out? Just cannot process anymore. It's been very difficult. I nibble and drink water and some chocolate milk to stay alive. I'm about 152 lbs. now........size 31 waist and medium shirts. I can fit into anything and look great in anything......what a great feeling......110 lbs lost but i'm a new man. But I miss food but it's not totally necessary to live. Our society gravitates around food and it's the currency we run our lives aroind.
It's amazing what cancer has taken from me this time:(
I'm lonely alot but often times not up for visitation....such a cruel side effect of the disease.
I just want some aspects of my life to return. I was cruising with the mag article and was hoping I would be clear but cancer changed that for us all. What I really miss is helping folks and interacting with you all here. That's one of my regrets but I'm fighting to try and return. Most days are so painful though.
If they won't let me back on trial drug I may be forced to have the inter-catheral pump installed this year. Big decision.
Any time when I feel "better" I try and push as far as I can go.
For example. all my wardrobe was 2x and I looked terrible wearing them. So finally pushed hard enough to shop for something to wrap around the new skinny me:)
I found some good old fashioned Levi's blue jeans....it's bee years and oh they make me look so good. And we got a pair of sweatpants and top that fits it. So I look much better and healthier with clothes that are tailored to your size. I noticed the stock of smaller sizes were in short supply whereas the bigger skzes had more quantity.
I can see clearly now how the girth of America has expanded in correlation with this trend. Have you noticed the GROSS combinations the food establishment has come up with these days? It's truly disgusting and unnhealthy....doesn't even look appetizing does it?
I'm enjoying football this year....Longhorns and Cowboys. TV is my best friend and mostly all I got. Enjoy the History channel...Pawn Stars, American Pickers, and Counting Cars are a few that I enjoy. I've caught a few movies that have been good and some downright terrifying.
All in all I'm trying my best everyday. I've got alot of issues and I just fight them. Doing my best to stay out of the hospital. Very grateful that we can still stay in our home...that's a Godsend. Finances have been a struggle since I lost my job.....and of course Life's breakdowns always occur when you're down as there have been plenty of them to say the least.
It's like they get together and say 'break' at the same time:)
I'm still alive though and fighting to find some kind of semblance of the life that was stripped away from me.
Where o'where is it?
I've just got to get better somehow, you know?
Take care, Jen and thanks much.
Big hugs!
-Craig
Hey Craig, Good to see you posting. Things really do all break at the same time. I wish they would find a way to make your pain much more maneageable. I've found that pain meds are so limited. They work for minor ailments but not the big stuff. Keep hanging in there the best that you can. The food in America these days (even the healthy stuff) can hardly be called food. It's all so twisted and modified. I have been doing a lot of organic and I don't really trust it but a person has to eat. I don't even use the soil in my backyard in my garden because we had tainted water in our area years ago. It's all very sad. Keep on keeping on! Helen
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Craig, We are sending ourSundanceh said:Hey Jen
Pain is out of control still every second for the last sixteen months.....pretty incredible stamina and endurance. Still giving to the trial but so far they have abandoned my requests for another s surgery. Today I met with trial doctor and hes talking to someone responsible in trial to stick up for me and say i need treatment. I gave freely to the trial and risked and now need help and he came here to help patients not hinder them. we'll seenwhat he comes up with.
That's what Santa to slip under the tree.......a surgery that will help me to points untaken. I look to maybe be able to do an eight or sixteen. I'm just hanging on and pushing myself where i can or have to. Things are so hard to do right now. Appts aremjust murder but they get me to a bed when I'm there.
Still in chemo.......doing avastin, lecuovoron, flouracil bolus, and 46-hour pump. Three bad reactions of oxy put me into life saving interventions all three times. Had the nurses and even main nurse scared to death. You could see the looks in their eyes....I'll never forget.
CEA is dropping....around 120 I think. Growth appears stable at this time so that's good for now. But ultimately I know this path is a short walk. I've run through most of the available drugs we use...we have so few. Regofenarib or however pronounced plus that cancer trial would be what I got left.
Kinda scary, huh?
Really glad you have not forgotten about me and took the time to post......we're sorta joined at the hip you know:)
Hospital appts are my social life these days.....otherwise mostly tied to bed....car rides are difficult as well but I just suck it up.
I can't eat anymore....know the old saying "what goes in must come out? Just cannot process anymore. It's been very difficult. I nibble and drink water and some chocolate milk to stay alive. I'm about 152 lbs. now........size 31 waist and medium shirts. I can fit into anything and look great in anything......what a great feeling......110 lbs lost but i'm a new man. But I miss food but it's not totally necessary to live. Our society gravitates around food and it's the currency we run our lives aroind.
It's amazing what cancer has taken from me this time:(
I'm lonely alot but often times not up for visitation....such a cruel side effect of the disease.
I just want some aspects of my life to return. I was cruising with the mag article and was hoping I would be clear but cancer changed that for us all. What I really miss is helping folks and interacting with you all here. That's one of my regrets but I'm fighting to try and return. Most days are so painful though.
If they won't let me back on trial drug I may be forced to have the inter-catheral pump installed this year. Big decision.
Any time when I feel "better" I try and push as far as I can go.
For example. all my wardrobe was 2x and I looked terrible wearing them. So finally pushed hard enough to shop for something to wrap around the new skinny me:)
I found some good old fashioned Levi's blue jeans....it's bee years and oh they make me look so good. And we got a pair of sweatpants and top that fits it. So I look much better and healthier with clothes that are tailored to your size. I noticed the stock of smaller sizes were in short supply whereas the bigger skzes had more quantity.
I can see clearly now how the girth of America has expanded in correlation with this trend. Have you noticed the GROSS combinations the food establishment has come up with these days? It's truly disgusting and unnhealthy....doesn't even look appetizing does it?
I'm enjoying football this year....Longhorns and Cowboys. TV is my best friend and mostly all I got. Enjoy the History channel...Pawn Stars, American Pickers, and Counting Cars are a few that I enjoy. I've caught a few movies that have been good and some downright terrifying.
All in all I'm trying my best everyday. I've got alot of issues and I just fight them. Doing my best to stay out of the hospital. Very grateful that we can still stay in our home...that's a Godsend. Finances have been a struggle since I lost my job.....and of course Life's breakdowns always occur when you're down as there have been plenty of them to say the least.
It's like they get together and say 'break' at the same time:)
I'm still alive though and fighting to find some kind of semblance of the life that was stripped away from me.
Where o'where is it?
I've just got to get better somehow, you know?
Take care, Jen and thanks much.
Big hugs!
-Craig
Craig, We are sending our thoughts and prayers for strength and hope. Keep fighting the Dragon!
Best Always, mike
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Dear CraigSundanceh said:Hey Jen
Pain is out of control still every second for the last sixteen months.....pretty incredible stamina and endurance. Still giving to the trial but so far they have abandoned my requests for another s surgery. Today I met with trial doctor and hes talking to someone responsible in trial to stick up for me and say i need treatment. I gave freely to the trial and risked and now need help and he came here to help patients not hinder them. we'll seenwhat he comes up with.
That's what Santa to slip under the tree.......a surgery that will help me to points untaken. I look to maybe be able to do an eight or sixteen. I'm just hanging on and pushing myself where i can or have to. Things are so hard to do right now. Appts aremjust murder but they get me to a bed when I'm there.
Still in chemo.......doing avastin, lecuovoron, flouracil bolus, and 46-hour pump. Three bad reactions of oxy put me into life saving interventions all three times. Had the nurses and even main nurse scared to death. You could see the looks in their eyes....I'll never forget.
CEA is dropping....around 120 I think. Growth appears stable at this time so that's good for now. But ultimately I know this path is a short walk. I've run through most of the available drugs we use...we have so few. Regofenarib or however pronounced plus that cancer trial would be what I got left.
Kinda scary, huh?
Really glad you have not forgotten about me and took the time to post......we're sorta joined at the hip you know:)
Hospital appts are my social life these days.....otherwise mostly tied to bed....car rides are difficult as well but I just suck it up.
I can't eat anymore....know the old saying "what goes in must come out? Just cannot process anymore. It's been very difficult. I nibble and drink water and some chocolate milk to stay alive. I'm about 152 lbs. now........size 31 waist and medium shirts. I can fit into anything and look great in anything......what a great feeling......110 lbs lost but i'm a new man. But I miss food but it's not totally necessary to live. Our society gravitates around food and it's the currency we run our lives aroind.
It's amazing what cancer has taken from me this time:(
I'm lonely alot but often times not up for visitation....such a cruel side effect of the disease.
I just want some aspects of my life to return. I was cruising with the mag article and was hoping I would be clear but cancer changed that for us all. What I really miss is helping folks and interacting with you all here. That's one of my regrets but I'm fighting to try and return. Most days are so painful though.
If they won't let me back on trial drug I may be forced to have the inter-catheral pump installed this year. Big decision.
Any time when I feel "better" I try and push as far as I can go.
For example. all my wardrobe was 2x and I looked terrible wearing them. So finally pushed hard enough to shop for something to wrap around the new skinny me:)
I found some good old fashioned Levi's blue jeans....it's bee years and oh they make me look so good. And we got a pair of sweatpants and top that fits it. So I look much better and healthier with clothes that are tailored to your size. I noticed the stock of smaller sizes were in short supply whereas the bigger skzes had more quantity.
I can see clearly now how the girth of America has expanded in correlation with this trend. Have you noticed the GROSS combinations the food establishment has come up with these days? It's truly disgusting and unnhealthy....doesn't even look appetizing does it?
I'm enjoying football this year....Longhorns and Cowboys. TV is my best friend and mostly all I got. Enjoy the History channel...Pawn Stars, American Pickers, and Counting Cars are a few that I enjoy. I've caught a few movies that have been good and some downright terrifying.
All in all I'm trying my best everyday. I've got alot of issues and I just fight them. Doing my best to stay out of the hospital. Very grateful that we can still stay in our home...that's a Godsend. Finances have been a struggle since I lost my job.....and of course Life's breakdowns always occur when you're down as there have been plenty of them to say the least.
It's like they get together and say 'break' at the same time:)
I'm still alive though and fighting to find some kind of semblance of the life that was stripped away from me.
Where o'where is it?
I've just got to get better somehow, you know?
Take care, Jen and thanks much.
Big hugs!
-Craig
Your absence from the board does not make you absent from our hearts and minds.
Always prayers for your improvement and relief from pain.
Hugs and love,
Marie who loves kitties
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WeightSundanceh said:Hey Jen
Pain is out of control still every second for the last sixteen months.....pretty incredible stamina and endurance. Still giving to the trial but so far they have abandoned my requests for another s surgery. Today I met with trial doctor and hes talking to someone responsible in trial to stick up for me and say i need treatment. I gave freely to the trial and risked and now need help and he came here to help patients not hinder them. we'll seenwhat he comes up with.
That's what Santa to slip under the tree.......a surgery that will help me to points untaken. I look to maybe be able to do an eight or sixteen. I'm just hanging on and pushing myself where i can or have to. Things are so hard to do right now. Appts aremjust murder but they get me to a bed when I'm there.
Still in chemo.......doing avastin, lecuovoron, flouracil bolus, and 46-hour pump. Three bad reactions of oxy put me into life saving interventions all three times. Had the nurses and even main nurse scared to death. You could see the looks in their eyes....I'll never forget.
CEA is dropping....around 120 I think. Growth appears stable at this time so that's good for now. But ultimately I know this path is a short walk. I've run through most of the available drugs we use...we have so few. Regofenarib or however pronounced plus that cancer trial would be what I got left.
Kinda scary, huh?
Really glad you have not forgotten about me and took the time to post......we're sorta joined at the hip you know:)
Hospital appts are my social life these days.....otherwise mostly tied to bed....car rides are difficult as well but I just suck it up.
I can't eat anymore....know the old saying "what goes in must come out? Just cannot process anymore. It's been very difficult. I nibble and drink water and some chocolate milk to stay alive. I'm about 152 lbs. now........size 31 waist and medium shirts. I can fit into anything and look great in anything......what a great feeling......110 lbs lost but i'm a new man. But I miss food but it's not totally necessary to live. Our society gravitates around food and it's the currency we run our lives aroind.
It's amazing what cancer has taken from me this time:(
I'm lonely alot but often times not up for visitation....such a cruel side effect of the disease.
I just want some aspects of my life to return. I was cruising with the mag article and was hoping I would be clear but cancer changed that for us all. What I really miss is helping folks and interacting with you all here. That's one of my regrets but I'm fighting to try and return. Most days are so painful though.
If they won't let me back on trial drug I may be forced to have the inter-catheral pump installed this year. Big decision.
Any time when I feel "better" I try and push as far as I can go.
For example. all my wardrobe was 2x and I looked terrible wearing them. So finally pushed hard enough to shop for something to wrap around the new skinny me:)
I found some good old fashioned Levi's blue jeans....it's bee years and oh they make me look so good. And we got a pair of sweatpants and top that fits it. So I look much better and healthier with clothes that are tailored to your size. I noticed the stock of smaller sizes were in short supply whereas the bigger skzes had more quantity.
I can see clearly now how the girth of America has expanded in correlation with this trend. Have you noticed the GROSS combinations the food establishment has come up with these days? It's truly disgusting and unnhealthy....doesn't even look appetizing does it?
I'm enjoying football this year....Longhorns and Cowboys. TV is my best friend and mostly all I got. Enjoy the History channel...Pawn Stars, American Pickers, and Counting Cars are a few that I enjoy. I've caught a few movies that have been good and some downright terrifying.
All in all I'm trying my best everyday. I've got alot of issues and I just fight them. Doing my best to stay out of the hospital. Very grateful that we can still stay in our home...that's a Godsend. Finances have been a struggle since I lost my job.....and of course Life's breakdowns always occur when you're down as there have been plenty of them to say the least.
It's like they get together and say 'break' at the same time:)
I'm still alive though and fighting to find some kind of semblance of the life that was stripped away from me.
Where o'where is it?
I've just got to get better somehow, you know?
Take care, Jen and thanks much.
Big hugs!
-Craig
Great to hear your hanging in there. I have been tempted to post a picture of George before Cancer & one Of him now, but what is the point. Over the past couple of years he has lost 50lbs. He looks great, but it's a struggle for him to keep weight on.
Sure would be nice if you could eat more.
Take care Hugs from George & Diane
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Thinking of youSundanceh said:Hey Jen
Pain is out of control still every second for the last sixteen months.....pretty incredible stamina and endurance. Still giving to the trial but so far they have abandoned my requests for another s surgery. Today I met with trial doctor and hes talking to someone responsible in trial to stick up for me and say i need treatment. I gave freely to the trial and risked and now need help and he came here to help patients not hinder them. we'll seenwhat he comes up with.
That's what Santa to slip under the tree.......a surgery that will help me to points untaken. I look to maybe be able to do an eight or sixteen. I'm just hanging on and pushing myself where i can or have to. Things are so hard to do right now. Appts aremjust murder but they get me to a bed when I'm there.
Still in chemo.......doing avastin, lecuovoron, flouracil bolus, and 46-hour pump. Three bad reactions of oxy put me into life saving interventions all three times. Had the nurses and even main nurse scared to death. You could see the looks in their eyes....I'll never forget.
CEA is dropping....around 120 I think. Growth appears stable at this time so that's good for now. But ultimately I know this path is a short walk. I've run through most of the available drugs we use...we have so few. Regofenarib or however pronounced plus that cancer trial would be what I got left.
Kinda scary, huh?
Really glad you have not forgotten about me and took the time to post......we're sorta joined at the hip you know:)
Hospital appts are my social life these days.....otherwise mostly tied to bed....car rides are difficult as well but I just suck it up.
I can't eat anymore....know the old saying "what goes in must come out? Just cannot process anymore. It's been very difficult. I nibble and drink water and some chocolate milk to stay alive. I'm about 152 lbs. now........size 31 waist and medium shirts. I can fit into anything and look great in anything......what a great feeling......110 lbs lost but i'm a new man. But I miss food but it's not totally necessary to live. Our society gravitates around food and it's the currency we run our lives aroind.
It's amazing what cancer has taken from me this time:(
I'm lonely alot but often times not up for visitation....such a cruel side effect of the disease.
I just want some aspects of my life to return. I was cruising with the mag article and was hoping I would be clear but cancer changed that for us all. What I really miss is helping folks and interacting with you all here. That's one of my regrets but I'm fighting to try and return. Most days are so painful though.
If they won't let me back on trial drug I may be forced to have the inter-catheral pump installed this year. Big decision.
Any time when I feel "better" I try and push as far as I can go.
For example. all my wardrobe was 2x and I looked terrible wearing them. So finally pushed hard enough to shop for something to wrap around the new skinny me:)
I found some good old fashioned Levi's blue jeans....it's bee years and oh they make me look so good. And we got a pair of sweatpants and top that fits it. So I look much better and healthier with clothes that are tailored to your size. I noticed the stock of smaller sizes were in short supply whereas the bigger skzes had more quantity.
I can see clearly now how the girth of America has expanded in correlation with this trend. Have you noticed the GROSS combinations the food establishment has come up with these days? It's truly disgusting and unnhealthy....doesn't even look appetizing does it?
I'm enjoying football this year....Longhorns and Cowboys. TV is my best friend and mostly all I got. Enjoy the History channel...Pawn Stars, American Pickers, and Counting Cars are a few that I enjoy. I've caught a few movies that have been good and some downright terrifying.
All in all I'm trying my best everyday. I've got alot of issues and I just fight them. Doing my best to stay out of the hospital. Very grateful that we can still stay in our home...that's a Godsend. Finances have been a struggle since I lost my job.....and of course Life's breakdowns always occur when you're down as there have been plenty of them to say the least.
It's like they get together and say 'break' at the same time:)
I'm still alive though and fighting to find some kind of semblance of the life that was stripped away from me.
Where o'where is it?
I've just got to get better somehow, you know?
Take care, Jen and thanks much.
Big hugs!
-Craig
I'm so sorry about your continuing pain. I hope you can get some relief somehow, someway.
0 -
What a pain (literally)Sundanceh said:Hey Jen
Pain is out of control still every second for the last sixteen months.....pretty incredible stamina and endurance. Still giving to the trial but so far they have abandoned my requests for another s surgery. Today I met with trial doctor and hes talking to someone responsible in trial to stick up for me and say i need treatment. I gave freely to the trial and risked and now need help and he came here to help patients not hinder them. we'll seenwhat he comes up with.
That's what Santa to slip under the tree.......a surgery that will help me to points untaken. I look to maybe be able to do an eight or sixteen. I'm just hanging on and pushing myself where i can or have to. Things are so hard to do right now. Appts aremjust murder but they get me to a bed when I'm there.
Still in chemo.......doing avastin, lecuovoron, flouracil bolus, and 46-hour pump. Three bad reactions of oxy put me into life saving interventions all three times. Had the nurses and even main nurse scared to death. You could see the looks in their eyes....I'll never forget.
CEA is dropping....around 120 I think. Growth appears stable at this time so that's good for now. But ultimately I know this path is a short walk. I've run through most of the available drugs we use...we have so few. Regofenarib or however pronounced plus that cancer trial would be what I got left.
Kinda scary, huh?
Really glad you have not forgotten about me and took the time to post......we're sorta joined at the hip you know:)
Hospital appts are my social life these days.....otherwise mostly tied to bed....car rides are difficult as well but I just suck it up.
I can't eat anymore....know the old saying "what goes in must come out? Just cannot process anymore. It's been very difficult. I nibble and drink water and some chocolate milk to stay alive. I'm about 152 lbs. now........size 31 waist and medium shirts. I can fit into anything and look great in anything......what a great feeling......110 lbs lost but i'm a new man. But I miss food but it's not totally necessary to live. Our society gravitates around food and it's the currency we run our lives aroind.
It's amazing what cancer has taken from me this time:(
I'm lonely alot but often times not up for visitation....such a cruel side effect of the disease.
I just want some aspects of my life to return. I was cruising with the mag article and was hoping I would be clear but cancer changed that for us all. What I really miss is helping folks and interacting with you all here. That's one of my regrets but I'm fighting to try and return. Most days are so painful though.
If they won't let me back on trial drug I may be forced to have the inter-catheral pump installed this year. Big decision.
Any time when I feel "better" I try and push as far as I can go.
For example. all my wardrobe was 2x and I looked terrible wearing them. So finally pushed hard enough to shop for something to wrap around the new skinny me:)
I found some good old fashioned Levi's blue jeans....it's bee years and oh they make me look so good. And we got a pair of sweatpants and top that fits it. So I look much better and healthier with clothes that are tailored to your size. I noticed the stock of smaller sizes were in short supply whereas the bigger skzes had more quantity.
I can see clearly now how the girth of America has expanded in correlation with this trend. Have you noticed the GROSS combinations the food establishment has come up with these days? It's truly disgusting and unnhealthy....doesn't even look appetizing does it?
I'm enjoying football this year....Longhorns and Cowboys. TV is my best friend and mostly all I got. Enjoy the History channel...Pawn Stars, American Pickers, and Counting Cars are a few that I enjoy. I've caught a few movies that have been good and some downright terrifying.
All in all I'm trying my best everyday. I've got alot of issues and I just fight them. Doing my best to stay out of the hospital. Very grateful that we can still stay in our home...that's a Godsend. Finances have been a struggle since I lost my job.....and of course Life's breakdowns always occur when you're down as there have been plenty of them to say the least.
It's like they get together and say 'break' at the same time:)
I'm still alive though and fighting to find some kind of semblance of the life that was stripped away from me.
Where o'where is it?
I've just got to get better somehow, you know?
Take care, Jen and thanks much.
Big hugs!
-Craig
We get to lose weight and look slim and trim, but are too sick to go out an get our good looks appreciated.
I am sorry that things are not improving, pain wise.
You come visit us when you get the energy, we'll be here, waiting.
I really hope your team can work on getting a handle on your pain and appetite.
Sue - Trubrit
0 -
Geesh, Craig!!!Sundanceh said:Hey Jen
Pain is out of control still every second for the last sixteen months.....pretty incredible stamina and endurance. Still giving to the trial but so far they have abandoned my requests for another s surgery. Today I met with trial doctor and hes talking to someone responsible in trial to stick up for me and say i need treatment. I gave freely to the trial and risked and now need help and he came here to help patients not hinder them. we'll seenwhat he comes up with.
That's what Santa to slip under the tree.......a surgery that will help me to points untaken. I look to maybe be able to do an eight or sixteen. I'm just hanging on and pushing myself where i can or have to. Things are so hard to do right now. Appts aremjust murder but they get me to a bed when I'm there.
Still in chemo.......doing avastin, lecuovoron, flouracil bolus, and 46-hour pump. Three bad reactions of oxy put me into life saving interventions all three times. Had the nurses and even main nurse scared to death. You could see the looks in their eyes....I'll never forget.
CEA is dropping....around 120 I think. Growth appears stable at this time so that's good for now. But ultimately I know this path is a short walk. I've run through most of the available drugs we use...we have so few. Regofenarib or however pronounced plus that cancer trial would be what I got left.
Kinda scary, huh?
Really glad you have not forgotten about me and took the time to post......we're sorta joined at the hip you know:)
Hospital appts are my social life these days.....otherwise mostly tied to bed....car rides are difficult as well but I just suck it up.
I can't eat anymore....know the old saying "what goes in must come out? Just cannot process anymore. It's been very difficult. I nibble and drink water and some chocolate milk to stay alive. I'm about 152 lbs. now........size 31 waist and medium shirts. I can fit into anything and look great in anything......what a great feeling......110 lbs lost but i'm a new man. But I miss food but it's not totally necessary to live. Our society gravitates around food and it's the currency we run our lives aroind.
It's amazing what cancer has taken from me this time:(
I'm lonely alot but often times not up for visitation....such a cruel side effect of the disease.
I just want some aspects of my life to return. I was cruising with the mag article and was hoping I would be clear but cancer changed that for us all. What I really miss is helping folks and interacting with you all here. That's one of my regrets but I'm fighting to try and return. Most days are so painful though.
If they won't let me back on trial drug I may be forced to have the inter-catheral pump installed this year. Big decision.
Any time when I feel "better" I try and push as far as I can go.
For example. all my wardrobe was 2x and I looked terrible wearing them. So finally pushed hard enough to shop for something to wrap around the new skinny me:)
I found some good old fashioned Levi's blue jeans....it's bee years and oh they make me look so good. And we got a pair of sweatpants and top that fits it. So I look much better and healthier with clothes that are tailored to your size. I noticed the stock of smaller sizes were in short supply whereas the bigger skzes had more quantity.
I can see clearly now how the girth of America has expanded in correlation with this trend. Have you noticed the GROSS combinations the food establishment has come up with these days? It's truly disgusting and unnhealthy....doesn't even look appetizing does it?
I'm enjoying football this year....Longhorns and Cowboys. TV is my best friend and mostly all I got. Enjoy the History channel...Pawn Stars, American Pickers, and Counting Cars are a few that I enjoy. I've caught a few movies that have been good and some downright terrifying.
All in all I'm trying my best everyday. I've got alot of issues and I just fight them. Doing my best to stay out of the hospital. Very grateful that we can still stay in our home...that's a Godsend. Finances have been a struggle since I lost my job.....and of course Life's breakdowns always occur when you're down as there have been plenty of them to say the least.
It's like they get together and say 'break' at the same time:)
I'm still alive though and fighting to find some kind of semblance of the life that was stripped away from me.
Where o'where is it?
I've just got to get better somehow, you know?
Take care, Jen and thanks much.
Big hugs!
-Craig
I was hoping that things would start getting better for you. i hope they come up with a better plan. I've been thinking of you a lot lately wondering how you were doing.
Lin
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Craig I am new to the boardEasyflip said:That sucks Craig,
I hope they get a handle on your pain and get you into some promising trials. Stay strong.
easyflip/richard
Craig I am new to the board and have not met you but I still want to wish you all the best, I hope that things will improve.
Last January when I had lost 25 lbs. (for me it's a lot I am a small person) they gave me smoothies with coconut milk to help keep the weight. Try it if you can.
Healing prayers going your way.
Pilar
0 -
It's so good to hear from youSundanceh said:Hey Jen
Pain is out of control still every second for the last sixteen months.....pretty incredible stamina and endurance. Still giving to the trial but so far they have abandoned my requests for another s surgery. Today I met with trial doctor and hes talking to someone responsible in trial to stick up for me and say i need treatment. I gave freely to the trial and risked and now need help and he came here to help patients not hinder them. we'll seenwhat he comes up with.
That's what Santa to slip under the tree.......a surgery that will help me to points untaken. I look to maybe be able to do an eight or sixteen. I'm just hanging on and pushing myself where i can or have to. Things are so hard to do right now. Appts aremjust murder but they get me to a bed when I'm there.
Still in chemo.......doing avastin, lecuovoron, flouracil bolus, and 46-hour pump. Three bad reactions of oxy put me into life saving interventions all three times. Had the nurses and even main nurse scared to death. You could see the looks in their eyes....I'll never forget.
CEA is dropping....around 120 I think. Growth appears stable at this time so that's good for now. But ultimately I know this path is a short walk. I've run through most of the available drugs we use...we have so few. Regofenarib or however pronounced plus that cancer trial would be what I got left.
Kinda scary, huh?
Really glad you have not forgotten about me and took the time to post......we're sorta joined at the hip you know:)
Hospital appts are my social life these days.....otherwise mostly tied to bed....car rides are difficult as well but I just suck it up.
I can't eat anymore....know the old saying "what goes in must come out? Just cannot process anymore. It's been very difficult. I nibble and drink water and some chocolate milk to stay alive. I'm about 152 lbs. now........size 31 waist and medium shirts. I can fit into anything and look great in anything......what a great feeling......110 lbs lost but i'm a new man. But I miss food but it's not totally necessary to live. Our society gravitates around food and it's the currency we run our lives aroind.
It's amazing what cancer has taken from me this time:(
I'm lonely alot but often times not up for visitation....such a cruel side effect of the disease.
I just want some aspects of my life to return. I was cruising with the mag article and was hoping I would be clear but cancer changed that for us all. What I really miss is helping folks and interacting with you all here. That's one of my regrets but I'm fighting to try and return. Most days are so painful though.
If they won't let me back on trial drug I may be forced to have the inter-catheral pump installed this year. Big decision.
Any time when I feel "better" I try and push as far as I can go.
For example. all my wardrobe was 2x and I looked terrible wearing them. So finally pushed hard enough to shop for something to wrap around the new skinny me:)
I found some good old fashioned Levi's blue jeans....it's bee years and oh they make me look so good. And we got a pair of sweatpants and top that fits it. So I look much better and healthier with clothes that are tailored to your size. I noticed the stock of smaller sizes were in short supply whereas the bigger skzes had more quantity.
I can see clearly now how the girth of America has expanded in correlation with this trend. Have you noticed the GROSS combinations the food establishment has come up with these days? It's truly disgusting and unnhealthy....doesn't even look appetizing does it?
I'm enjoying football this year....Longhorns and Cowboys. TV is my best friend and mostly all I got. Enjoy the History channel...Pawn Stars, American Pickers, and Counting Cars are a few that I enjoy. I've caught a few movies that have been good and some downright terrifying.
All in all I'm trying my best everyday. I've got alot of issues and I just fight them. Doing my best to stay out of the hospital. Very grateful that we can still stay in our home...that's a Godsend. Finances have been a struggle since I lost my job.....and of course Life's breakdowns always occur when you're down as there have been plenty of them to say the least.
It's like they get together and say 'break' at the same time:)
I'm still alive though and fighting to find some kind of semblance of the life that was stripped away from me.
Where o'where is it?
I've just got to get better somehow, you know?
Take care, Jen and thanks much.
Big hugs!
-Craig
It's so good to hear from you Craig. I certainly wish it was under better conditions for you. It's a Hell of a way to loose weight but I am glad that you see that as a positive although now I think you have to concentrate on maintaining your weight and getting enough nutrition in you. I have benn thin most of my life but recently put on 20 pounds since my 3rd recurrence mainly to combat cancer and survive treatments. When I hear people talking about trying to loose weight, I tell them I have found the perfect diet plan in chemo.
I am glad you are still stable but you are right that it won't last forever. I know that is true for me as well. That is why I am always researching trials even though I don't need them now. There is also the CRC drug on the FDA fast track (TAS-102). I am not sure how good it will be but it is another option.
Keep fighting, we ALL miss you here and need you.
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Craig, you are missed!!! Ipilarica said:Craig I am new to the board
Craig I am new to the board and have not met you but I still want to wish you all the best, I hope that things will improve.
Last January when I had lost 25 lbs. (for me it's a lot I am a small person) they gave me smoothies with coconut milk to help keep the weight. Try it if you can.
Healing prayers going your way.
Pilar
Craig, you are missed!!! I am sorry that life has been so difficult these last months. Thanks for posting....your very presence gladdens hearts. My prayer and hope is for you to soon feel relief and some of your old energy return. I am one of many who looks for your posts and misses your words of wisdom.
hugs,
CM
0 -
Thoughts and prayersSundanceh said:Hey Jen
Pain is out of control still every second for the last sixteen months.....pretty incredible stamina and endurance. Still giving to the trial but so far they have abandoned my requests for another s surgery. Today I met with trial doctor and hes talking to someone responsible in trial to stick up for me and say i need treatment. I gave freely to the trial and risked and now need help and he came here to help patients not hinder them. we'll seenwhat he comes up with.
That's what Santa to slip under the tree.......a surgery that will help me to points untaken. I look to maybe be able to do an eight or sixteen. I'm just hanging on and pushing myself where i can or have to. Things are so hard to do right now. Appts aremjust murder but they get me to a bed when I'm there.
Still in chemo.......doing avastin, lecuovoron, flouracil bolus, and 46-hour pump. Three bad reactions of oxy put me into life saving interventions all three times. Had the nurses and even main nurse scared to death. You could see the looks in their eyes....I'll never forget.
CEA is dropping....around 120 I think. Growth appears stable at this time so that's good for now. But ultimately I know this path is a short walk. I've run through most of the available drugs we use...we have so few. Regofenarib or however pronounced plus that cancer trial would be what I got left.
Kinda scary, huh?
Really glad you have not forgotten about me and took the time to post......we're sorta joined at the hip you know:)
Hospital appts are my social life these days.....otherwise mostly tied to bed....car rides are difficult as well but I just suck it up.
I can't eat anymore....know the old saying "what goes in must come out? Just cannot process anymore. It's been very difficult. I nibble and drink water and some chocolate milk to stay alive. I'm about 152 lbs. now........size 31 waist and medium shirts. I can fit into anything and look great in anything......what a great feeling......110 lbs lost but i'm a new man. But I miss food but it's not totally necessary to live. Our society gravitates around food and it's the currency we run our lives aroind.
It's amazing what cancer has taken from me this time:(
I'm lonely alot but often times not up for visitation....such a cruel side effect of the disease.
I just want some aspects of my life to return. I was cruising with the mag article and was hoping I would be clear but cancer changed that for us all. What I really miss is helping folks and interacting with you all here. That's one of my regrets but I'm fighting to try and return. Most days are so painful though.
If they won't let me back on trial drug I may be forced to have the inter-catheral pump installed this year. Big decision.
Any time when I feel "better" I try and push as far as I can go.
For example. all my wardrobe was 2x and I looked terrible wearing them. So finally pushed hard enough to shop for something to wrap around the new skinny me:)
I found some good old fashioned Levi's blue jeans....it's bee years and oh they make me look so good. And we got a pair of sweatpants and top that fits it. So I look much better and healthier with clothes that are tailored to your size. I noticed the stock of smaller sizes were in short supply whereas the bigger skzes had more quantity.
I can see clearly now how the girth of America has expanded in correlation with this trend. Have you noticed the GROSS combinations the food establishment has come up with these days? It's truly disgusting and unnhealthy....doesn't even look appetizing does it?
I'm enjoying football this year....Longhorns and Cowboys. TV is my best friend and mostly all I got. Enjoy the History channel...Pawn Stars, American Pickers, and Counting Cars are a few that I enjoy. I've caught a few movies that have been good and some downright terrifying.
All in all I'm trying my best everyday. I've got alot of issues and I just fight them. Doing my best to stay out of the hospital. Very grateful that we can still stay in our home...that's a Godsend. Finances have been a struggle since I lost my job.....and of course Life's breakdowns always occur when you're down as there have been plenty of them to say the least.
It's like they get together and say 'break' at the same time:)
I'm still alive though and fighting to find some kind of semblance of the life that was stripped away from me.
Where o'where is it?
I've just got to get better somehow, you know?
Take care, Jen and thanks much.
Big hugs!
-Craig
Craig, you are in my thoughts and prayers daily. It is good to get an update. You have given so much to this forum I wish we could pay you back with CEA and Pain REDUCTION!
I completely understand your inability to post and please know that we all are wishing that your ability to post will increase tremendously!
I too am enjoying football this year. If the Lions win against Arizona on Sunday they will have the best record in the NFL. Unbelievable!!!
Love and light to you.
Phil
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Happy to hear from youSundanceh said:Hey Jen
Pain is out of control still every second for the last sixteen months.....pretty incredible stamina and endurance. Still giving to the trial but so far they have abandoned my requests for another s surgery. Today I met with trial doctor and hes talking to someone responsible in trial to stick up for me and say i need treatment. I gave freely to the trial and risked and now need help and he came here to help patients not hinder them. we'll seenwhat he comes up with.
That's what Santa to slip under the tree.......a surgery that will help me to points untaken. I look to maybe be able to do an eight or sixteen. I'm just hanging on and pushing myself where i can or have to. Things are so hard to do right now. Appts aremjust murder but they get me to a bed when I'm there.
Still in chemo.......doing avastin, lecuovoron, flouracil bolus, and 46-hour pump. Three bad reactions of oxy put me into life saving interventions all three times. Had the nurses and even main nurse scared to death. You could see the looks in their eyes....I'll never forget.
CEA is dropping....around 120 I think. Growth appears stable at this time so that's good for now. But ultimately I know this path is a short walk. I've run through most of the available drugs we use...we have so few. Regofenarib or however pronounced plus that cancer trial would be what I got left.
Kinda scary, huh?
Really glad you have not forgotten about me and took the time to post......we're sorta joined at the hip you know:)
Hospital appts are my social life these days.....otherwise mostly tied to bed....car rides are difficult as well but I just suck it up.
I can't eat anymore....know the old saying "what goes in must come out? Just cannot process anymore. It's been very difficult. I nibble and drink water and some chocolate milk to stay alive. I'm about 152 lbs. now........size 31 waist and medium shirts. I can fit into anything and look great in anything......what a great feeling......110 lbs lost but i'm a new man. But I miss food but it's not totally necessary to live. Our society gravitates around food and it's the currency we run our lives aroind.
It's amazing what cancer has taken from me this time:(
I'm lonely alot but often times not up for visitation....such a cruel side effect of the disease.
I just want some aspects of my life to return. I was cruising with the mag article and was hoping I would be clear but cancer changed that for us all. What I really miss is helping folks and interacting with you all here. That's one of my regrets but I'm fighting to try and return. Most days are so painful though.
If they won't let me back on trial drug I may be forced to have the inter-catheral pump installed this year. Big decision.
Any time when I feel "better" I try and push as far as I can go.
For example. all my wardrobe was 2x and I looked terrible wearing them. So finally pushed hard enough to shop for something to wrap around the new skinny me:)
I found some good old fashioned Levi's blue jeans....it's bee years and oh they make me look so good. And we got a pair of sweatpants and top that fits it. So I look much better and healthier with clothes that are tailored to your size. I noticed the stock of smaller sizes were in short supply whereas the bigger skzes had more quantity.
I can see clearly now how the girth of America has expanded in correlation with this trend. Have you noticed the GROSS combinations the food establishment has come up with these days? It's truly disgusting and unnhealthy....doesn't even look appetizing does it?
I'm enjoying football this year....Longhorns and Cowboys. TV is my best friend and mostly all I got. Enjoy the History channel...Pawn Stars, American Pickers, and Counting Cars are a few that I enjoy. I've caught a few movies that have been good and some downright terrifying.
All in all I'm trying my best everyday. I've got alot of issues and I just fight them. Doing my best to stay out of the hospital. Very grateful that we can still stay in our home...that's a Godsend. Finances have been a struggle since I lost my job.....and of course Life's breakdowns always occur when you're down as there have been plenty of them to say the least.
It's like they get together and say 'break' at the same time:)
I'm still alive though and fighting to find some kind of semblance of the life that was stripped away from me.
Where o'where is it?
I've just got to get better somehow, you know?
Take care, Jen and thanks much.
Big hugs!
-Craig
So good to hear your update, Craig. Sorry you are still in so much pain. I admire your stamina and strength to fight on. My DH passed away on 11/2/14. All this suffering makes me so sad.
Linda
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Hey, Craig. I am so rarelySundanceh said:Hey Jen
Pain is out of control still every second for the last sixteen months.....pretty incredible stamina and endurance. Still giving to the trial but so far they have abandoned my requests for another s surgery. Today I met with trial doctor and hes talking to someone responsible in trial to stick up for me and say i need treatment. I gave freely to the trial and risked and now need help and he came here to help patients not hinder them. we'll seenwhat he comes up with.
That's what Santa to slip under the tree.......a surgery that will help me to points untaken. I look to maybe be able to do an eight or sixteen. I'm just hanging on and pushing myself where i can or have to. Things are so hard to do right now. Appts aremjust murder but they get me to a bed when I'm there.
Still in chemo.......doing avastin, lecuovoron, flouracil bolus, and 46-hour pump. Three bad reactions of oxy put me into life saving interventions all three times. Had the nurses and even main nurse scared to death. You could see the looks in their eyes....I'll never forget.
CEA is dropping....around 120 I think. Growth appears stable at this time so that's good for now. But ultimately I know this path is a short walk. I've run through most of the available drugs we use...we have so few. Regofenarib or however pronounced plus that cancer trial would be what I got left.
Kinda scary, huh?
Really glad you have not forgotten about me and took the time to post......we're sorta joined at the hip you know:)
Hospital appts are my social life these days.....otherwise mostly tied to bed....car rides are difficult as well but I just suck it up.
I can't eat anymore....know the old saying "what goes in must come out? Just cannot process anymore. It's been very difficult. I nibble and drink water and some chocolate milk to stay alive. I'm about 152 lbs. now........size 31 waist and medium shirts. I can fit into anything and look great in anything......what a great feeling......110 lbs lost but i'm a new man. But I miss food but it's not totally necessary to live. Our society gravitates around food and it's the currency we run our lives aroind.
It's amazing what cancer has taken from me this time:(
I'm lonely alot but often times not up for visitation....such a cruel side effect of the disease.
I just want some aspects of my life to return. I was cruising with the mag article and was hoping I would be clear but cancer changed that for us all. What I really miss is helping folks and interacting with you all here. That's one of my regrets but I'm fighting to try and return. Most days are so painful though.
If they won't let me back on trial drug I may be forced to have the inter-catheral pump installed this year. Big decision.
Any time when I feel "better" I try and push as far as I can go.
For example. all my wardrobe was 2x and I looked terrible wearing them. So finally pushed hard enough to shop for something to wrap around the new skinny me:)
I found some good old fashioned Levi's blue jeans....it's bee years and oh they make me look so good. And we got a pair of sweatpants and top that fits it. So I look much better and healthier with clothes that are tailored to your size. I noticed the stock of smaller sizes were in short supply whereas the bigger skzes had more quantity.
I can see clearly now how the girth of America has expanded in correlation with this trend. Have you noticed the GROSS combinations the food establishment has come up with these days? It's truly disgusting and unnhealthy....doesn't even look appetizing does it?
I'm enjoying football this year....Longhorns and Cowboys. TV is my best friend and mostly all I got. Enjoy the History channel...Pawn Stars, American Pickers, and Counting Cars are a few that I enjoy. I've caught a few movies that have been good and some downright terrifying.
All in all I'm trying my best everyday. I've got alot of issues and I just fight them. Doing my best to stay out of the hospital. Very grateful that we can still stay in our home...that's a Godsend. Finances have been a struggle since I lost my job.....and of course Life's breakdowns always occur when you're down as there have been plenty of them to say the least.
It's like they get together and say 'break' at the same time:)
I'm still alive though and fighting to find some kind of semblance of the life that was stripped away from me.
Where o'where is it?
I've just got to get better somehow, you know?
Take care, Jen and thanks much.
Big hugs!
-Craig
Hey, Craig. I am so rarely here on the board. Just wanted to tell you that you're on my mind.
The Cowboys are my Boyfriend's first team, followed by Ravens, and Eagles. He's from Delaware but has loved the Cowboys since he was 7 years old. He said that, as a kid, he liked the star on their helmets and that his Grandfather loved them. I never watched football until I met him. Then I started to watch some games, trying to impress him ; ) Hey, I know what a "fair catch" is now.
I hope you are on the way to feeling better and getting stronger soon. I hope that you get into the trial you're looking at. It has been a long road for you and I would love to see that road be gentler and kinder for you, with beautiful things around the bend.
In the Light,
Aud
0 -
Praryers for treatmentSundanceh said:Hey Jen
Pain is out of control still every second for the last sixteen months.....pretty incredible stamina and endurance. Still giving to the trial but so far they have abandoned my requests for another s surgery. Today I met with trial doctor and hes talking to someone responsible in trial to stick up for me and say i need treatment. I gave freely to the trial and risked and now need help and he came here to help patients not hinder them. we'll seenwhat he comes up with.
That's what Santa to slip under the tree.......a surgery that will help me to points untaken. I look to maybe be able to do an eight or sixteen. I'm just hanging on and pushing myself where i can or have to. Things are so hard to do right now. Appts aremjust murder but they get me to a bed when I'm there.
Still in chemo.......doing avastin, lecuovoron, flouracil bolus, and 46-hour pump. Three bad reactions of oxy put me into life saving interventions all three times. Had the nurses and even main nurse scared to death. You could see the looks in their eyes....I'll never forget.
CEA is dropping....around 120 I think. Growth appears stable at this time so that's good for now. But ultimately I know this path is a short walk. I've run through most of the available drugs we use...we have so few. Regofenarib or however pronounced plus that cancer trial would be what I got left.
Kinda scary, huh?
Really glad you have not forgotten about me and took the time to post......we're sorta joined at the hip you know:)
Hospital appts are my social life these days.....otherwise mostly tied to bed....car rides are difficult as well but I just suck it up.
I can't eat anymore....know the old saying "what goes in must come out? Just cannot process anymore. It's been very difficult. I nibble and drink water and some chocolate milk to stay alive. I'm about 152 lbs. now........size 31 waist and medium shirts. I can fit into anything and look great in anything......what a great feeling......110 lbs lost but i'm a new man. But I miss food but it's not totally necessary to live. Our society gravitates around food and it's the currency we run our lives aroind.
It's amazing what cancer has taken from me this time:(
I'm lonely alot but often times not up for visitation....such a cruel side effect of the disease.
I just want some aspects of my life to return. I was cruising with the mag article and was hoping I would be clear but cancer changed that for us all. What I really miss is helping folks and interacting with you all here. That's one of my regrets but I'm fighting to try and return. Most days are so painful though.
If they won't let me back on trial drug I may be forced to have the inter-catheral pump installed this year. Big decision.
Any time when I feel "better" I try and push as far as I can go.
For example. all my wardrobe was 2x and I looked terrible wearing them. So finally pushed hard enough to shop for something to wrap around the new skinny me:)
I found some good old fashioned Levi's blue jeans....it's bee years and oh they make me look so good. And we got a pair of sweatpants and top that fits it. So I look much better and healthier with clothes that are tailored to your size. I noticed the stock of smaller sizes were in short supply whereas the bigger skzes had more quantity.
I can see clearly now how the girth of America has expanded in correlation with this trend. Have you noticed the GROSS combinations the food establishment has come up with these days? It's truly disgusting and unnhealthy....doesn't even look appetizing does it?
I'm enjoying football this year....Longhorns and Cowboys. TV is my best friend and mostly all I got. Enjoy the History channel...Pawn Stars, American Pickers, and Counting Cars are a few that I enjoy. I've caught a few movies that have been good and some downright terrifying.
All in all I'm trying my best everyday. I've got alot of issues and I just fight them. Doing my best to stay out of the hospital. Very grateful that we can still stay in our home...that's a Godsend. Finances have been a struggle since I lost my job.....and of course Life's breakdowns always occur when you're down as there have been plenty of them to say the least.
It's like they get together and say 'break' at the same time:)
I'm still alive though and fighting to find some kind of semblance of the life that was stripped away from me.
Where o'where is it?
I've just got to get better somehow, you know?
Take care, Jen and thanks much.
Big hugs!
-Craig
Craig - It's sad to hear of our lion in such pain. I hope that the trial doctors listen and get you the treatment you need. Glad to hear the cancer is at least stable. Hope that improves too. Take care of yourself. Thinking of you, Traci
0
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