Linda P. Where are you?

srwruns 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

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!

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.

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.

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.

You.....
....are so brave and lovely. So touched by you and your courage. I am praying for your liver to step up.

Robin

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.

Very powerful. You are a
Very powerful. You are a gracious woman to open up your heart and life like this.

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.

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

EnglishGal 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

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,

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.

THANK YOU, LINDA
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.

Monika

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..

Cindy 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..

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