Linda P. Where are you?
Comments
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newbiecalifornia_artist said:Linda
So, very saddened to here of how things are going. You are an inspiration to so many.
Your asking that the separate discussion board for uterine cancer be created really has made a difference in so many lives, for that I do thank you.
Wishing the very best for you in this part of your long journey.
I will be wishing for a miracle for you.
Your friend,
Claudia
JUst got diagnosed Wednesday and I was so inspired by reading your posts Linda. I already feel close to you and love you. Thank you for your spirit and love. We all on this journey together and need to help each other through support and reassurance. The Lord your GOd will comfort you. The Lord bless you and keep you, make His face to shine upon you, and give you His peace. A peace that reaches beyond all human understanding. Blessings to all!0 -
Glad to hear you got out andgermanlady said:newbie
JUst got diagnosed Wednesday and I was so inspired by reading your posts Linda. I already feel close to you and love you. Thank you for your spirit and love. We all on this journey together and need to help each other through support and reassurance. The Lord your GOd will comfort you. The Lord bless you and keep you, make His face to shine upon you, and give you His peace. A peace that reaches beyond all human understanding. Blessings to all!
Glad to hear you got out and about. When you make it out here to the left coast I'll take you to the restaurant in Monterey that makes the creme brûlée I have ever had....and boy have I had a lot all over! Your med regime sounds tough...I just envision all those multiple-times-a-day pill boxes!
Thinking of you0 -
Standards of Caresrwruns said:Glad to hear you got out and
Glad to hear you got out and about. When you make it out here to the left coast I'll take you to the restaurant in Monterey that makes the creme brûlée I have ever had....and boy have I had a lot all over! Your med regime sounds tough...I just envision all those multiple-times-a-day pill boxes!
Thinking of you
I think gossip and creme brulee should be in the standards of care!...glad you enjoyed it and cant wait to hear what you enjoy next!!
Hugs!0 -
Linda you are solulu1010 said:Standards of Care
I think gossip and creme brulee should be in the standards of care!...glad you enjoyed it and cant wait to hear what you enjoy next!!
Hugs!
Linda you are so inspirational. I love how you are so strong I hope I am the same. I agree with Carlene, alcohol and desserts plus a sports car. I just bought one. I call it my mid life crisis car because physically I am like 55. Going thru menopause and all. You keep doing what your doing. Live life to the fullest. You go girlfriend.0 -
You guys sure you want the blow-by-blow on this? Here goes:jbeans888 said:Linda you are so
Linda you are so inspirational. I love how you are so strong I hope I am the same. I agree with Carlene, alcohol and desserts plus a sports car. I just bought one. I call it my mid life crisis car because physically I am like 55. Going thru menopause and all. You keep doing what your doing. Live life to the fullest. You go girlfriend.
I can't believe how quickly things are rushing along, and hope to have everything settle down soon. I had a hospital bed delivered yesterday, which seem SO dramatic as I have no trouble making the stairs or getting around. But it is so difficult to arrange stacks of pillows so my legs stay raised, plus more for my upper body if the acid (not bad yet) seems to be rising up, plus small pillows to provide support for my lower back and my ascites belly. I think the bed will help and I plan to make it up with a beautiful comforter and lots of pretty pillows and NOT to stay in bed all the time. But it sure makes a statement that someone here is seriously ill here.
The ascites fluid is already coming back, but they said it could drained with paracentesis early next week if it gets worse. Getting that drained makes me feel better than any of the ga-zillion pills I take daily, which I think are causing a lot of of discomfort. They have me taking Zofran twice daily, and Senecot (stool spofteners/laxitive) every morning and before bed, and I have been trying it their way, on a schedule, but can't imagine taking the Oxicodone every hour (5 mg) and only take that when the pain gets bad, before I go out to do anything, qand at night to help me sleep. But added to that are 3 water pills daily and 3 potassium supplements to go with them. I have an itchy rash all over my torso, so also take benedryl before bed and have some kind of potion that gets mixed with water to take orally also if it gets bad. With hopice coming in twice weekly, and my boys and DIL all on FMLA this week, it's like a full-time job to stay on top of all of this stuff and still reassure all my family & friends that constantly phone and come over to spend time with me. My family (not my husband, but the others) all seem to think my body could shut down any time. They even want to move up Thanksgiving. I have no intention of dying within the next 3 weeks!
But it is a possibility and I try to spend some time each day in spiritual thought and in preparation for the end. It seems surreal, but I've read enough about liver failure to know that very soon (when I can no longer eat or keep anything down) I need to have my head and heart and beliefs in order.
Since my liver started to fail in earnest it has become a real challenge to not just curl up in bed and give up. But I am determined to fight this last lag of the journey. As nauseating as food is to me now, I am forcing myself to drink 4 cans of Replete daily. And yesterday Vic and I joined friends at Longhorn Steak House where I was able to get down about 1/3 for my filet and half my mashed potatoes. (I will slice the leftover steak up thin today and snack on it during the day.) Jake, Audie, & grandkids came over with a big dinner for Vic and I tonight, and I picked at some of that, curling up later with each of the grandkids in my new hospital bed to watch TV. It was so sweet to snuggle up to them, but so heartbreaking to see them cling to me and kiss me so many times, blinking back their tears. I must look pretty bad; they are clearly worried. But the people I know that died of cancer similar to mine stopped EATING at the end, something I’m trying so hard not to do. But I understand now why couldn’t eat, when it makes me feel so awful. But I will fight on in this way and try and get out and do something every day until I can’t. I still haven’t given up the tiny flame of hope that the good parts of my liver will step up and pick up the load.
I continue to make plans to do things. My 9-year olf grandson is playing in the Super Bowl of midget football Sunday at B uckness University, and I hope to feel good enough to go. My son Eric is coming in Sunday and staying half the week. (He's an attorney and I can't imagine how this is impacting his practice and his firm as he is a partner.) The early part of the week I hope I am getting paracentesis again. My brother, who I haven't seen in 2 years, is flying in from Little Rock and will be here Friday, so that will be wonderful. And one of my dear friends is coming over Thursday to make her famous Matzo Ball soup for me, joined by 3 other girlfriends who are bringing other goodies.
So even in this possibly final battle, I am surrounded by love and support. Blessed. If you piled all of the many many blessings of my life on a scale, and set 'cancer' on the other half of the scale, my blessings would still far outweigh the hard days. That's so very true.0 -
Still inspiring...lindaprocopio said:You guys sure you want the blow-by-blow on this? Here goes:
I can't believe how quickly things are rushing along, and hope to have everything settle down soon. I had a hospital bed delivered yesterday, which seem SO dramatic as I have no trouble making the stairs or getting around. But it is so difficult to arrange stacks of pillows so my legs stay raised, plus more for my upper body if the acid (not bad yet) seems to be rising up, plus small pillows to provide support for my lower back and my ascites belly. I think the bed will help and I plan to make it up with a beautiful comforter and lots of pretty pillows and NOT to stay in bed all the time. But it sure makes a statement that someone here is seriously ill here.
The ascites fluid is already coming back, but they said it could drained with paracentesis early next week if it gets worse. Getting that drained makes me feel better than any of the ga-zillion pills I take daily, which I think are causing a lot of of discomfort. They have me taking Zofran twice daily, and Senecot (stool spofteners/laxitive) every morning and before bed, and I have been trying it their way, on a schedule, but can't imagine taking the Oxicodone every hour (5 mg) and only take that when the pain gets bad, before I go out to do anything, qand at night to help me sleep. But added to that are 3 water pills daily and 3 potassium supplements to go with them. I have an itchy rash all over my torso, so also take benedryl before bed and have some kind of potion that gets mixed with water to take orally also if it gets bad. With hopice coming in twice weekly, and my boys and DIL all on FMLA this week, it's like a full-time job to stay on top of all of this stuff and still reassure all my family & friends that constantly phone and come over to spend time with me. My family (not my husband, but the others) all seem to think my body could shut down any time. They even want to move up Thanksgiving. I have no intention of dying within the next 3 weeks!
But it is a possibility and I try to spend some time each day in spiritual thought and in preparation for the end. It seems surreal, but I've read enough about liver failure to know that very soon (when I can no longer eat or keep anything down) I need to have my head and heart and beliefs in order.
Since my liver started to fail in earnest it has become a real challenge to not just curl up in bed and give up. But I am determined to fight this last lag of the journey. As nauseating as food is to me now, I am forcing myself to drink 4 cans of Replete daily. And yesterday Vic and I joined friends at Longhorn Steak House where I was able to get down about 1/3 for my filet and half my mashed potatoes. (I will slice the leftover steak up thin today and snack on it during the day.) Jake, Audie, & grandkids came over with a big dinner for Vic and I tonight, and I picked at some of that, curling up later with each of the grandkids in my new hospital bed to watch TV. It was so sweet to snuggle up to them, but so heartbreaking to see them cling to me and kiss me so many times, blinking back their tears. I must look pretty bad; they are clearly worried. But the people I know that died of cancer similar to mine stopped EATING at the end, something I’m trying so hard not to do. But I understand now why couldn’t eat, when it makes me feel so awful. But I will fight on in this way and try and get out and do something every day until I can’t. I still haven’t given up the tiny flame of hope that the good parts of my liver will step up and pick up the load.
I continue to make plans to do things. My 9-year olf grandson is playing in the Super Bowl of midget football Sunday at B uckness University, and I hope to feel good enough to go. My son Eric is coming in Sunday and staying half the week. (He's an attorney and I can't imagine how this is impacting his practice and his firm as he is a partner.) The early part of the week I hope I am getting paracentesis again. My brother, who I haven't seen in 2 years, is flying in from Little Rock and will be here Friday, so that will be wonderful. And one of my dear friends is coming over Thursday to make her famous Matzo Ball soup for me, joined by 3 other girlfriends who are bringing other goodies.
So even in this possibly final battle, I am surrounded by love and support. Blessed. If you piled all of the many many blessings of my life on a scale, and set 'cancer' on the other half of the scale, my blessings would still far outweigh the hard days. That's so very true.
Well, Linda, this post was a real tear jerker. I love that your hospital bed is covered with beautiful things and that you can cuddle with your grandchildren on it. I love that you're eating what you can. I love that your friends and family are loving and supporting you as best as they are able. I love that in all the important ways you are getting your "house" in order. I DON'T love that the ascites is coming back or all the other symptoms that your body is wearing out. Please don't wait until the pain is bad before taking your Oxycodone! You need to take it regularly enough to STAY out of pain! Once the pain is there, it's much harder to get rid of, and pain saps your strength. I'll be praying like crazy that you make that Super Bowl game. Know that beams of love and light are winging your way regularly. Carolyn0 -
You.....lindaprocopio said:You guys sure you want the blow-by-blow on this? Here goes:
I can't believe how quickly things are rushing along, and hope to have everything settle down soon. I had a hospital bed delivered yesterday, which seem SO dramatic as I have no trouble making the stairs or getting around. But it is so difficult to arrange stacks of pillows so my legs stay raised, plus more for my upper body if the acid (not bad yet) seems to be rising up, plus small pillows to provide support for my lower back and my ascites belly. I think the bed will help and I plan to make it up with a beautiful comforter and lots of pretty pillows and NOT to stay in bed all the time. But it sure makes a statement that someone here is seriously ill here.
The ascites fluid is already coming back, but they said it could drained with paracentesis early next week if it gets worse. Getting that drained makes me feel better than any of the ga-zillion pills I take daily, which I think are causing a lot of of discomfort. They have me taking Zofran twice daily, and Senecot (stool spofteners/laxitive) every morning and before bed, and I have been trying it their way, on a schedule, but can't imagine taking the Oxicodone every hour (5 mg) and only take that when the pain gets bad, before I go out to do anything, qand at night to help me sleep. But added to that are 3 water pills daily and 3 potassium supplements to go with them. I have an itchy rash all over my torso, so also take benedryl before bed and have some kind of potion that gets mixed with water to take orally also if it gets bad. With hopice coming in twice weekly, and my boys and DIL all on FMLA this week, it's like a full-time job to stay on top of all of this stuff and still reassure all my family & friends that constantly phone and come over to spend time with me. My family (not my husband, but the others) all seem to think my body could shut down any time. They even want to move up Thanksgiving. I have no intention of dying within the next 3 weeks!
But it is a possibility and I try to spend some time each day in spiritual thought and in preparation for the end. It seems surreal, but I've read enough about liver failure to know that very soon (when I can no longer eat or keep anything down) I need to have my head and heart and beliefs in order.
Since my liver started to fail in earnest it has become a real challenge to not just curl up in bed and give up. But I am determined to fight this last lag of the journey. As nauseating as food is to me now, I am forcing myself to drink 4 cans of Replete daily. And yesterday Vic and I joined friends at Longhorn Steak House where I was able to get down about 1/3 for my filet and half my mashed potatoes. (I will slice the leftover steak up thin today and snack on it during the day.) Jake, Audie, & grandkids came over with a big dinner for Vic and I tonight, and I picked at some of that, curling up later with each of the grandkids in my new hospital bed to watch TV. It was so sweet to snuggle up to them, but so heartbreaking to see them cling to me and kiss me so many times, blinking back their tears. I must look pretty bad; they are clearly worried. But the people I know that died of cancer similar to mine stopped EATING at the end, something I’m trying so hard not to do. But I understand now why couldn’t eat, when it makes me feel so awful. But I will fight on in this way and try and get out and do something every day until I can’t. I still haven’t given up the tiny flame of hope that the good parts of my liver will step up and pick up the load.
I continue to make plans to do things. My 9-year olf grandson is playing in the Super Bowl of midget football Sunday at B uckness University, and I hope to feel good enough to go. My son Eric is coming in Sunday and staying half the week. (He's an attorney and I can't imagine how this is impacting his practice and his firm as he is a partner.) The early part of the week I hope I am getting paracentesis again. My brother, who I haven't seen in 2 years, is flying in from Little Rock and will be here Friday, so that will be wonderful. And one of my dear friends is coming over Thursday to make her famous Matzo Ball soup for me, joined by 3 other girlfriends who are bringing other goodies.
So even in this possibly final battle, I am surrounded by love and support. Blessed. If you piled all of the many many blessings of my life on a scale, and set 'cancer' on the other half of the scale, my blessings would still far outweigh the hard days. That's so very true.
....are so brave and lovely. So touched by you and your courage. I am praying for your liver to step up.
Robin0 -
Lindalindaprocopio said:You guys sure you want the blow-by-blow on this? Here goes:
I can't believe how quickly things are rushing along, and hope to have everything settle down soon. I had a hospital bed delivered yesterday, which seem SO dramatic as I have no trouble making the stairs or getting around. But it is so difficult to arrange stacks of pillows so my legs stay raised, plus more for my upper body if the acid (not bad yet) seems to be rising up, plus small pillows to provide support for my lower back and my ascites belly. I think the bed will help and I plan to make it up with a beautiful comforter and lots of pretty pillows and NOT to stay in bed all the time. But it sure makes a statement that someone here is seriously ill here.
The ascites fluid is already coming back, but they said it could drained with paracentesis early next week if it gets worse. Getting that drained makes me feel better than any of the ga-zillion pills I take daily, which I think are causing a lot of of discomfort. They have me taking Zofran twice daily, and Senecot (stool spofteners/laxitive) every morning and before bed, and I have been trying it their way, on a schedule, but can't imagine taking the Oxicodone every hour (5 mg) and only take that when the pain gets bad, before I go out to do anything, qand at night to help me sleep. But added to that are 3 water pills daily and 3 potassium supplements to go with them. I have an itchy rash all over my torso, so also take benedryl before bed and have some kind of potion that gets mixed with water to take orally also if it gets bad. With hopice coming in twice weekly, and my boys and DIL all on FMLA this week, it's like a full-time job to stay on top of all of this stuff and still reassure all my family & friends that constantly phone and come over to spend time with me. My family (not my husband, but the others) all seem to think my body could shut down any time. They even want to move up Thanksgiving. I have no intention of dying within the next 3 weeks!
But it is a possibility and I try to spend some time each day in spiritual thought and in preparation for the end. It seems surreal, but I've read enough about liver failure to know that very soon (when I can no longer eat or keep anything down) I need to have my head and heart and beliefs in order.
Since my liver started to fail in earnest it has become a real challenge to not just curl up in bed and give up. But I am determined to fight this last lag of the journey. As nauseating as food is to me now, I am forcing myself to drink 4 cans of Replete daily. And yesterday Vic and I joined friends at Longhorn Steak House where I was able to get down about 1/3 for my filet and half my mashed potatoes. (I will slice the leftover steak up thin today and snack on it during the day.) Jake, Audie, & grandkids came over with a big dinner for Vic and I tonight, and I picked at some of that, curling up later with each of the grandkids in my new hospital bed to watch TV. It was so sweet to snuggle up to them, but so heartbreaking to see them cling to me and kiss me so many times, blinking back their tears. I must look pretty bad; they are clearly worried. But the people I know that died of cancer similar to mine stopped EATING at the end, something I’m trying so hard not to do. But I understand now why couldn’t eat, when it makes me feel so awful. But I will fight on in this way and try and get out and do something every day until I can’t. I still haven’t given up the tiny flame of hope that the good parts of my liver will step up and pick up the load.
I continue to make plans to do things. My 9-year olf grandson is playing in the Super Bowl of midget football Sunday at B uckness University, and I hope to feel good enough to go. My son Eric is coming in Sunday and staying half the week. (He's an attorney and I can't imagine how this is impacting his practice and his firm as he is a partner.) The early part of the week I hope I am getting paracentesis again. My brother, who I haven't seen in 2 years, is flying in from Little Rock and will be here Friday, so that will be wonderful. And one of my dear friends is coming over Thursday to make her famous Matzo Ball soup for me, joined by 3 other girlfriends who are bringing other goodies.
So even in this possibly final battle, I am surrounded by love and support. Blessed. If you piled all of the many many blessings of my life on a scale, and set 'cancer' on the other half of the scale, my blessings would still far outweigh the hard days. That's so very true.
Your posts are not easy to read, but I, like so many want and need to travel this leg of the journey with you. That is what friends do for each other. In you, we see our own immortality front and center. It's scary but you are providing such raw intensity and reality along with the dignity we all want for ourselves. My tears are for the unfairness of this disease. For you, for all of us on this community and for all the wonderfully special people we have all been robbed of because of it. The disease is damn hard enough..why can't we get it, do our prison sentence time with the treatments and be done with it? Why does it get to be done with us? No answers...No real cures
You are so gifted in your way to describe your surroundings...even making a hospital bed sound like something from Better Homes & Gardens! Too funny! I have visions of you trapizing around in brightly colored designer loungewear trying to make all your houseguests feel welcome....
You have learned how to make the small things in life seem extra large....hugs, touches, cuddle time...ALL of this is making life long memories for the grandkids....keep it going.
May your weekend be filled with less pain and discomfort...and a lot less FLUID buildup - LOL!
Sending gentle hugs, lots of prayers and hopes the weekend is kind to you....EAT on!
Laurie0 -
Very powerful. You are alindaprocopio said:You guys sure you want the blow-by-blow on this? Here goes:
I can't believe how quickly things are rushing along, and hope to have everything settle down soon. I had a hospital bed delivered yesterday, which seem SO dramatic as I have no trouble making the stairs or getting around. But it is so difficult to arrange stacks of pillows so my legs stay raised, plus more for my upper body if the acid (not bad yet) seems to be rising up, plus small pillows to provide support for my lower back and my ascites belly. I think the bed will help and I plan to make it up with a beautiful comforter and lots of pretty pillows and NOT to stay in bed all the time. But it sure makes a statement that someone here is seriously ill here.
The ascites fluid is already coming back, but they said it could drained with paracentesis early next week if it gets worse. Getting that drained makes me feel better than any of the ga-zillion pills I take daily, which I think are causing a lot of of discomfort. They have me taking Zofran twice daily, and Senecot (stool spofteners/laxitive) every morning and before bed, and I have been trying it their way, on a schedule, but can't imagine taking the Oxicodone every hour (5 mg) and only take that when the pain gets bad, before I go out to do anything, qand at night to help me sleep. But added to that are 3 water pills daily and 3 potassium supplements to go with them. I have an itchy rash all over my torso, so also take benedryl before bed and have some kind of potion that gets mixed with water to take orally also if it gets bad. With hopice coming in twice weekly, and my boys and DIL all on FMLA this week, it's like a full-time job to stay on top of all of this stuff and still reassure all my family & friends that constantly phone and come over to spend time with me. My family (not my husband, but the others) all seem to think my body could shut down any time. They even want to move up Thanksgiving. I have no intention of dying within the next 3 weeks!
But it is a possibility and I try to spend some time each day in spiritual thought and in preparation for the end. It seems surreal, but I've read enough about liver failure to know that very soon (when I can no longer eat or keep anything down) I need to have my head and heart and beliefs in order.
Since my liver started to fail in earnest it has become a real challenge to not just curl up in bed and give up. But I am determined to fight this last lag of the journey. As nauseating as food is to me now, I am forcing myself to drink 4 cans of Replete daily. And yesterday Vic and I joined friends at Longhorn Steak House where I was able to get down about 1/3 for my filet and half my mashed potatoes. (I will slice the leftover steak up thin today and snack on it during the day.) Jake, Audie, & grandkids came over with a big dinner for Vic and I tonight, and I picked at some of that, curling up later with each of the grandkids in my new hospital bed to watch TV. It was so sweet to snuggle up to them, but so heartbreaking to see them cling to me and kiss me so many times, blinking back their tears. I must look pretty bad; they are clearly worried. But the people I know that died of cancer similar to mine stopped EATING at the end, something I’m trying so hard not to do. But I understand now why couldn’t eat, when it makes me feel so awful. But I will fight on in this way and try and get out and do something every day until I can’t. I still haven’t given up the tiny flame of hope that the good parts of my liver will step up and pick up the load.
I continue to make plans to do things. My 9-year olf grandson is playing in the Super Bowl of midget football Sunday at B uckness University, and I hope to feel good enough to go. My son Eric is coming in Sunday and staying half the week. (He's an attorney and I can't imagine how this is impacting his practice and his firm as he is a partner.) The early part of the week I hope I am getting paracentesis again. My brother, who I haven't seen in 2 years, is flying in from Little Rock and will be here Friday, so that will be wonderful. And one of my dear friends is coming over Thursday to make her famous Matzo Ball soup for me, joined by 3 other girlfriends who are bringing other goodies.
So even in this possibly final battle, I am surrounded by love and support. Blessed. If you piled all of the many many blessings of my life on a scale, and set 'cancer' on the other half of the scale, my blessings would still far outweigh the hard days. That's so very true.
Very powerful. You are a gracious woman to open up your heart and life like this.0 -
I concur with all the comments
on this thread and to say, Linda, all my prayers are with you on an ongoing basis.
Ann0 -
Thinking of youlindaprocopio said:You guys sure you want the blow-by-blow on this? Here goes:
I can't believe how quickly things are rushing along, and hope to have everything settle down soon. I had a hospital bed delivered yesterday, which seem SO dramatic as I have no trouble making the stairs or getting around. But it is so difficult to arrange stacks of pillows so my legs stay raised, plus more for my upper body if the acid (not bad yet) seems to be rising up, plus small pillows to provide support for my lower back and my ascites belly. I think the bed will help and I plan to make it up with a beautiful comforter and lots of pretty pillows and NOT to stay in bed all the time. But it sure makes a statement that someone here is seriously ill here.
The ascites fluid is already coming back, but they said it could drained with paracentesis early next week if it gets worse. Getting that drained makes me feel better than any of the ga-zillion pills I take daily, which I think are causing a lot of of discomfort. They have me taking Zofran twice daily, and Senecot (stool spofteners/laxitive) every morning and before bed, and I have been trying it their way, on a schedule, but can't imagine taking the Oxicodone every hour (5 mg) and only take that when the pain gets bad, before I go out to do anything, qand at night to help me sleep. But added to that are 3 water pills daily and 3 potassium supplements to go with them. I have an itchy rash all over my torso, so also take benedryl before bed and have some kind of potion that gets mixed with water to take orally also if it gets bad. With hopice coming in twice weekly, and my boys and DIL all on FMLA this week, it's like a full-time job to stay on top of all of this stuff and still reassure all my family & friends that constantly phone and come over to spend time with me. My family (not my husband, but the others) all seem to think my body could shut down any time. They even want to move up Thanksgiving. I have no intention of dying within the next 3 weeks!
But it is a possibility and I try to spend some time each day in spiritual thought and in preparation for the end. It seems surreal, but I've read enough about liver failure to know that very soon (when I can no longer eat or keep anything down) I need to have my head and heart and beliefs in order.
Since my liver started to fail in earnest it has become a real challenge to not just curl up in bed and give up. But I am determined to fight this last lag of the journey. As nauseating as food is to me now, I am forcing myself to drink 4 cans of Replete daily. And yesterday Vic and I joined friends at Longhorn Steak House where I was able to get down about 1/3 for my filet and half my mashed potatoes. (I will slice the leftover steak up thin today and snack on it during the day.) Jake, Audie, & grandkids came over with a big dinner for Vic and I tonight, and I picked at some of that, curling up later with each of the grandkids in my new hospital bed to watch TV. It was so sweet to snuggle up to them, but so heartbreaking to see them cling to me and kiss me so many times, blinking back their tears. I must look pretty bad; they are clearly worried. But the people I know that died of cancer similar to mine stopped EATING at the end, something I’m trying so hard not to do. But I understand now why couldn’t eat, when it makes me feel so awful. But I will fight on in this way and try and get out and do something every day until I can’t. I still haven’t given up the tiny flame of hope that the good parts of my liver will step up and pick up the load.
I continue to make plans to do things. My 9-year olf grandson is playing in the Super Bowl of midget football Sunday at B uckness University, and I hope to feel good enough to go. My son Eric is coming in Sunday and staying half the week. (He's an attorney and I can't imagine how this is impacting his practice and his firm as he is a partner.) The early part of the week I hope I am getting paracentesis again. My brother, who I haven't seen in 2 years, is flying in from Little Rock and will be here Friday, so that will be wonderful. And one of my dear friends is coming over Thursday to make her famous Matzo Ball soup for me, joined by 3 other girlfriends who are bringing other goodies.
So even in this possibly final battle, I am surrounded by love and support. Blessed. If you piled all of the many many blessings of my life on a scale, and set 'cancer' on the other half of the scale, my blessings would still far outweigh the hard days. That's so very true.
L iving Large
I nspiring
N urturing
D edicated
A mazing
So many ways to describe you, Linda. You are awesome. A true leader. You have taken all of us under your wing to help us all. You have the courage to conquer new frontiers (with new treatments, etc.) and have logged your journey to help others and you are still continuing to do so.
My heart goes out to you. Thank you for continuing to share your journey. As painful as it may be to read (because we don't want you to be going through this), it is something we all think about at one time or another.
((((Linda)))) Sending you well wishes and prayers.
Kathy0 -
Thank you.lindaprocopio said:You guys sure you want the blow-by-blow on this? Here goes:
I can't believe how quickly things are rushing along, and hope to have everything settle down soon. I had a hospital bed delivered yesterday, which seem SO dramatic as I have no trouble making the stairs or getting around. But it is so difficult to arrange stacks of pillows so my legs stay raised, plus more for my upper body if the acid (not bad yet) seems to be rising up, plus small pillows to provide support for my lower back and my ascites belly. I think the bed will help and I plan to make it up with a beautiful comforter and lots of pretty pillows and NOT to stay in bed all the time. But it sure makes a statement that someone here is seriously ill here.
The ascites fluid is already coming back, but they said it could drained with paracentesis early next week if it gets worse. Getting that drained makes me feel better than any of the ga-zillion pills I take daily, which I think are causing a lot of of discomfort. They have me taking Zofran twice daily, and Senecot (stool spofteners/laxitive) every morning and before bed, and I have been trying it their way, on a schedule, but can't imagine taking the Oxicodone every hour (5 mg) and only take that when the pain gets bad, before I go out to do anything, qand at night to help me sleep. But added to that are 3 water pills daily and 3 potassium supplements to go with them. I have an itchy rash all over my torso, so also take benedryl before bed and have some kind of potion that gets mixed with water to take orally also if it gets bad. With hopice coming in twice weekly, and my boys and DIL all on FMLA this week, it's like a full-time job to stay on top of all of this stuff and still reassure all my family & friends that constantly phone and come over to spend time with me. My family (not my husband, but the others) all seem to think my body could shut down any time. They even want to move up Thanksgiving. I have no intention of dying within the next 3 weeks!
But it is a possibility and I try to spend some time each day in spiritual thought and in preparation for the end. It seems surreal, but I've read enough about liver failure to know that very soon (when I can no longer eat or keep anything down) I need to have my head and heart and beliefs in order.
Since my liver started to fail in earnest it has become a real challenge to not just curl up in bed and give up. But I am determined to fight this last lag of the journey. As nauseating as food is to me now, I am forcing myself to drink 4 cans of Replete daily. And yesterday Vic and I joined friends at Longhorn Steak House where I was able to get down about 1/3 for my filet and half my mashed potatoes. (I will slice the leftover steak up thin today and snack on it during the day.) Jake, Audie, & grandkids came over with a big dinner for Vic and I tonight, and I picked at some of that, curling up later with each of the grandkids in my new hospital bed to watch TV. It was so sweet to snuggle up to them, but so heartbreaking to see them cling to me and kiss me so many times, blinking back their tears. I must look pretty bad; they are clearly worried. But the people I know that died of cancer similar to mine stopped EATING at the end, something I’m trying so hard not to do. But I understand now why couldn’t eat, when it makes me feel so awful. But I will fight on in this way and try and get out and do something every day until I can’t. I still haven’t given up the tiny flame of hope that the good parts of my liver will step up and pick up the load.
I continue to make plans to do things. My 9-year olf grandson is playing in the Super Bowl of midget football Sunday at B uckness University, and I hope to feel good enough to go. My son Eric is coming in Sunday and staying half the week. (He's an attorney and I can't imagine how this is impacting his practice and his firm as he is a partner.) The early part of the week I hope I am getting paracentesis again. My brother, who I haven't seen in 2 years, is flying in from Little Rock and will be here Friday, so that will be wonderful. And one of my dear friends is coming over Thursday to make her famous Matzo Ball soup for me, joined by 3 other girlfriends who are bringing other goodies.
So even in this possibly final battle, I am surrounded by love and support. Blessed. If you piled all of the many many blessings of my life on a scale, and set 'cancer' on the other half of the scale, my blessings would still far outweigh the hard days. That's so very true.
I know it has got to be hard sharing your personal life, and I know it is so appreciated by so many of us.. I too made a trip to my beloved mountains early fall to pick my and my husband and pets final resting place. Ashes to be spread at a beautiful location in the woods, by a small waterfall.. I often go there in my mind. It gives me peace rather than anxiety. May God bless and keep you.again thank you, thank you for sharing this last journey. Praying you are surrounded by your loved one. Know your are loved and surrounded by all of us.Judy0 -
Linda thanks for shariingEnglishGal said:I concur with all the comments
on this thread and to say, Linda, all my prayers are with you on an ongoing basis.
Ann
It is difficult to read your post and know that you are going through so much. I admire you for being able to write it and share your journey with us. You are such an inspiration. You remain in my prayers for peace and comfort. You remain my hero. Hope you had a good weekend. So glad you are continuing your fight, in peace and caring,0 -
This says it all, LindaKaleena said:Thinking of you
L iving Large
I nspiring
N urturing
D edicated
A mazing
So many ways to describe you, Linda. You are awesome. A true leader. You have taken all of us under your wing to help us all. You have the courage to conquer new frontiers (with new treatments, etc.) and have logged your journey to help others and you are still continuing to do so.
My heart goes out to you. Thank you for continuing to share your journey. As painful as it may be to read (because we don't want you to be going through this), it is something we all think about at one time or another.
((((Linda)))) Sending you well wishes and prayers.
Kathy
Thank you for continuing to share your journey. Kathy has said so much of what I would want to say to you.
I hope and pray that your liver decides to step up to the plate.
You're in my prayers
Helen0 -
THANK YOU, LINDAlindaprocopio said:You guys sure you want the blow-by-blow on this? Here goes:
I can't believe how quickly things are rushing along, and hope to have everything settle down soon. I had a hospital bed delivered yesterday, which seem SO dramatic as I have no trouble making the stairs or getting around. But it is so difficult to arrange stacks of pillows so my legs stay raised, plus more for my upper body if the acid (not bad yet) seems to be rising up, plus small pillows to provide support for my lower back and my ascites belly. I think the bed will help and I plan to make it up with a beautiful comforter and lots of pretty pillows and NOT to stay in bed all the time. But it sure makes a statement that someone here is seriously ill here.
The ascites fluid is already coming back, but they said it could drained with paracentesis early next week if it gets worse. Getting that drained makes me feel better than any of the ga-zillion pills I take daily, which I think are causing a lot of of discomfort. They have me taking Zofran twice daily, and Senecot (stool spofteners/laxitive) every morning and before bed, and I have been trying it their way, on a schedule, but can't imagine taking the Oxicodone every hour (5 mg) and only take that when the pain gets bad, before I go out to do anything, qand at night to help me sleep. But added to that are 3 water pills daily and 3 potassium supplements to go with them. I have an itchy rash all over my torso, so also take benedryl before bed and have some kind of potion that gets mixed with water to take orally also if it gets bad. With hopice coming in twice weekly, and my boys and DIL all on FMLA this week, it's like a full-time job to stay on top of all of this stuff and still reassure all my family & friends that constantly phone and come over to spend time with me. My family (not my husband, but the others) all seem to think my body could shut down any time. They even want to move up Thanksgiving. I have no intention of dying within the next 3 weeks!
But it is a possibility and I try to spend some time each day in spiritual thought and in preparation for the end. It seems surreal, but I've read enough about liver failure to know that very soon (when I can no longer eat or keep anything down) I need to have my head and heart and beliefs in order.
Since my liver started to fail in earnest it has become a real challenge to not just curl up in bed and give up. But I am determined to fight this last lag of the journey. As nauseating as food is to me now, I am forcing myself to drink 4 cans of Replete daily. And yesterday Vic and I joined friends at Longhorn Steak House where I was able to get down about 1/3 for my filet and half my mashed potatoes. (I will slice the leftover steak up thin today and snack on it during the day.) Jake, Audie, & grandkids came over with a big dinner for Vic and I tonight, and I picked at some of that, curling up later with each of the grandkids in my new hospital bed to watch TV. It was so sweet to snuggle up to them, but so heartbreaking to see them cling to me and kiss me so many times, blinking back their tears. I must look pretty bad; they are clearly worried. But the people I know that died of cancer similar to mine stopped EATING at the end, something I’m trying so hard not to do. But I understand now why couldn’t eat, when it makes me feel so awful. But I will fight on in this way and try and get out and do something every day until I can’t. I still haven’t given up the tiny flame of hope that the good parts of my liver will step up and pick up the load.
I continue to make plans to do things. My 9-year olf grandson is playing in the Super Bowl of midget football Sunday at B uckness University, and I hope to feel good enough to go. My son Eric is coming in Sunday and staying half the week. (He's an attorney and I can't imagine how this is impacting his practice and his firm as he is a partner.) The early part of the week I hope I am getting paracentesis again. My brother, who I haven't seen in 2 years, is flying in from Little Rock and will be here Friday, so that will be wonderful. And one of my dear friends is coming over Thursday to make her famous Matzo Ball soup for me, joined by 3 other girlfriends who are bringing other goodies.
So even in this possibly final battle, I am surrounded by love and support. Blessed. If you piled all of the many many blessings of my life on a scale, and set 'cancer' on the other half of the scale, my blessings would still far outweigh the hard days. That's so very true.
In the midst of all of this you still write to us, it's amazing. And though it breaks my heart to hear all that you're going through, I can still find a bit of comfort to know that you are still solid, strong, and fighting. What a wonderful family you have - yes, you are truly blessed. We are all encouraged today by your hopeful spirit, that no matter what the circumstances, there are ALWAYS blessings to be cherished and appreciated.
My hugs and prayers to you, Linda are unceasing. May He continue to lift you up far beyond this dreaded disease. And may your family be blessed by your love and strength.
Monika0 -
Linda, thank youRo10 said:Linda thanks for shariing
It is difficult to read your post and know that you are going through so much. I admire you for being able to write it and share your journey with us. You are such an inspiration. You remain in my prayers for peace and comfort. You remain my hero. Hope you had a good weekend. So glad you are continuing your fight, in peace and caring,
I hope you can feel my big hug. Wishing you hope, peace and love as you continue this journey.
Kelly0 -
You are
truly blessed Linda. I can feel the love and support of your family and friends. I'm also getting hungry reading your posts.. filet, mashed potatoes, matzo ball soup. Sending great big hugs and prayers your way as always. Hope you were able to get outside today and enjoy the beautiful fall weather. At least it's beautiful here in Ohio and I'm assuming it is in PA too..0 -
You are amazing to sharelindaprocopio said:You guys sure you want the blow-by-blow on this? Here goes:
I can't believe how quickly things are rushing along, and hope to have everything settle down soon. I had a hospital bed delivered yesterday, which seem SO dramatic as I have no trouble making the stairs or getting around. But it is so difficult to arrange stacks of pillows so my legs stay raised, plus more for my upper body if the acid (not bad yet) seems to be rising up, plus small pillows to provide support for my lower back and my ascites belly. I think the bed will help and I plan to make it up with a beautiful comforter and lots of pretty pillows and NOT to stay in bed all the time. But it sure makes a statement that someone here is seriously ill here.
The ascites fluid is already coming back, but they said it could drained with paracentesis early next week if it gets worse. Getting that drained makes me feel better than any of the ga-zillion pills I take daily, which I think are causing a lot of of discomfort. They have me taking Zofran twice daily, and Senecot (stool spofteners/laxitive) every morning and before bed, and I have been trying it their way, on a schedule, but can't imagine taking the Oxicodone every hour (5 mg) and only take that when the pain gets bad, before I go out to do anything, qand at night to help me sleep. But added to that are 3 water pills daily and 3 potassium supplements to go with them. I have an itchy rash all over my torso, so also take benedryl before bed and have some kind of potion that gets mixed with water to take orally also if it gets bad. With hopice coming in twice weekly, and my boys and DIL all on FMLA this week, it's like a full-time job to stay on top of all of this stuff and still reassure all my family & friends that constantly phone and come over to spend time with me. My family (not my husband, but the others) all seem to think my body could shut down any time. They even want to move up Thanksgiving. I have no intention of dying within the next 3 weeks!
But it is a possibility and I try to spend some time each day in spiritual thought and in preparation for the end. It seems surreal, but I've read enough about liver failure to know that very soon (when I can no longer eat or keep anything down) I need to have my head and heart and beliefs in order.
Since my liver started to fail in earnest it has become a real challenge to not just curl up in bed and give up. But I am determined to fight this last lag of the journey. As nauseating as food is to me now, I am forcing myself to drink 4 cans of Replete daily. And yesterday Vic and I joined friends at Longhorn Steak House where I was able to get down about 1/3 for my filet and half my mashed potatoes. (I will slice the leftover steak up thin today and snack on it during the day.) Jake, Audie, & grandkids came over with a big dinner for Vic and I tonight, and I picked at some of that, curling up later with each of the grandkids in my new hospital bed to watch TV. It was so sweet to snuggle up to them, but so heartbreaking to see them cling to me and kiss me so many times, blinking back their tears. I must look pretty bad; they are clearly worried. But the people I know that died of cancer similar to mine stopped EATING at the end, something I’m trying so hard not to do. But I understand now why couldn’t eat, when it makes me feel so awful. But I will fight on in this way and try and get out and do something every day until I can’t. I still haven’t given up the tiny flame of hope that the good parts of my liver will step up and pick up the load.
I continue to make plans to do things. My 9-year olf grandson is playing in the Super Bowl of midget football Sunday at B uckness University, and I hope to feel good enough to go. My son Eric is coming in Sunday and staying half the week. (He's an attorney and I can't imagine how this is impacting his practice and his firm as he is a partner.) The early part of the week I hope I am getting paracentesis again. My brother, who I haven't seen in 2 years, is flying in from Little Rock and will be here Friday, so that will be wonderful. And one of my dear friends is coming over Thursday to make her famous Matzo Ball soup for me, joined by 3 other girlfriends who are bringing other goodies.
So even in this possibly final battle, I am surrounded by love and support. Blessed. If you piled all of the many many blessings of my life on a scale, and set 'cancer' on the other half of the scale, my blessings would still far outweigh the hard days. That's so very true.
You are amazing to share your thoughts with all of us. Thank you for that. It hurts to read all that you are going through, but you have gracefully continued to keep living and enjoying each precious moment in spite of everything. May you be surrounded by love and find peace and comfort. Sending big hugs and prayers.
-Laura0 -
LindaCindy Bear said:You are
truly blessed Linda. I can feel the love and support of your family and friends. I'm also getting hungry reading your posts.. filet, mashed potatoes, matzo ball soup. Sending great big hugs and prayers your way as always. Hope you were able to get outside today and enjoy the beautiful fall weather. At least it's beautiful here in Ohio and I'm assuming it is in PA too..
Thank you so much for sharing your life with us. Although it hurts to read what you are going through I am humbled by your willingness to do so. My prayers go out to you and your family. I am sure it is difficult for you to see your family in pain. I am glad they are there with you and I am sure they are gathering strength from you.
I have to say you are having a busier weekend than I am.
Karen0 -
Lindakikz said:Linda
Thank you so much for sharing your life with us. Although it hurts to read what you are going through I am humbled by your willingness to do so. My prayers go out to you and your family. I am sure it is difficult for you to see your family in pain. I am glad they are there with you and I am sure they are gathering strength from you.
I have to say you are having a busier weekend than I am.
Karen
You are such a dear! This just isnt fair! My heart just aches for you and your family and yet you are holding it all together and making the best of things.
I do agree about the blessings. I think of this often. I have received so many blessings as a result of this horrible disease but it is such a high price to pay.
You are doing terrifically and there is no doubt in my mind that you will be at the Thanksgiving table.
When I was first diagnosed I had been ill for quite a while and I had gotten to the point of near obstruction, lots of pain and unable to eat or drink. They gave me a Fentanyl patch which I changed every three days and it worked great. My pain was relieved and I had "breakthrough" pain med if I did have any pain. It was great to not have to be popping pain meds all day and nite. I am not sure why they did not offer this to you but you could ask.
I pray things settle down for you and you have a wonderful week with you family and friends.
Linda0
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