Linda P. Where are you?

bots said:

Linda, Dear Linda
I send you love, prayers, and all my support for your difficult decision. I hope I will be able to be as wise when the time comes. You have been and still are an inspiration for so many. You are truly loved!!!

Bots

Linda
I have followed you since my diagnosis one year ago and come to love you for all the reasons the others have already stated. You have been so inspiring...I will never forget this summer when you not only planned a pool party but cleaned the house also, when your CA-125 was so high! It is my prayer that you sit by that pool next summer with your feet up! If you feel like posting please do....as I said, we care for you like a family member and we all want to know how our family is doing, especially you. I pray that God wraps his arms around you and meets your every need. Please know that you are in all our hearts and we will all be praying for you. God bless you.

Linda

lulu1010 said:

I almost forgot!
I want to tell you that I am so glad you are taking the pain meds. I am a nurse and I believe strongly in the pain meds. If they make living better and make the "uncomfortable" go away, then so be it, no matter what stage you are in. I hope all the girls learn this also. It is medicine and makes things better when are having discomfort. Take those pills and go on doing what you love to do!

Update
(I typed this up as a response to a Private Message, and thought it would make an edequate update for all of you wonderful supportive women. I'm doing my best. My sister and her husband slept over last night because we had a freak October snowstorm, so we had a nice morning with them. Then my grandson had his playoff game at 2. Thus far, they are undefeated, so I didn't want to miss that. But even as I try and 'live large', I can see that my body would SOOO rather be in bed than pushing myself.

Suddenly I seem to have all kinds of new symptoms: bleeding hemmoroids (which I've never had but I was told were par for the course with all this fluid pressure), and after the football game my legs were swollen from the feet up over my knees to my thighs, & that was a 1st ever. And I remember these very same symptoms happening to Dorian and Nancy during their final weeks. Then this all seems very real. I have 24 hour support from hospice and called them and they just had me take an extra water pill (& potassium), elevate my feet higher than my heart, and use Preparation H. I'm to phone tomorrow if my legs remain swollen; otherwise I see them here on Tuesday. I am going to push for sonogram-guided paracentesis and see if that relieves some of this horrible pressure. I'll try it once and if the fluid just rushes back, maybe not again.

But I'd PLANNED to go with my family to a restaurant for their little Playoff Victory party, and I just wasn't up to it when the game was over. That's not good. I don't want curling up in bed to be a more attractive option for me than a party. not yet. Today it feels like things are moving really quickly, and not in a good direction.

Thanks, everyone.

lindaprocopio said:

Update
(I typed this up as a response to a Private Message, and thought it would make an edequate update for all of you wonderful supportive women. I'm doing my best. My sister and her husband slept over last night because we had a freak October snowstorm, so we had a nice morning with them. Then my grandson had his playoff game at 2. Thus far, they are undefeated, so I didn't want to miss that. But even as I try and 'live large', I can see that my body would SOOO rather be in bed than pushing myself.

Suddenly I seem to have all kinds of new symptoms: bleeding hemmoroids (which I've never had but I was told were par for the course with all this fluid pressure), and after the football game my legs were swollen from the feet up over my knees to my thighs, & that was a 1st ever. And I remember these very same symptoms happening to Dorian and Nancy during their final weeks. Then this all seems very real. I have 24 hour support from hospice and called them and they just had me take an extra water pill (& potassium), elevate my feet higher than my heart, and use Preparation H. I'm to phone tomorrow if my legs remain swollen; otherwise I see them here on Tuesday. I am going to push for sonogram-guided paracentesis and see if that relieves some of this horrible pressure. I'll try it once and if the fluid just rushes back, maybe not again.

But I'd PLANNED to go with my family to a restaurant for their little Playoff Victory party, and I just wasn't up to it when the game was over. That's not good. I don't want curling up in bed to be a more attractive option for me than a party. not yet. Today it feels like things are moving really quickly, and not in a good direction.

Thanks, everyone.

Linda P.
Dearest Linda,

When I joined the uterine board you had recently done a roll call. I read some of your posts and admired how you'd expressed yourself. I knew from the posts that you were not well and had tried a number of things to stem the cancer from spreading.

In the United States we have removed ourselves from the active process of dying so your words are useful to me. I am not around medical establishments enough to have regular exposure to the dying process and all that it entails. In addition to the emotional and mental ramifications there are real physical ones that can catch anyone off guard.

Your horror at your legs swelling is real. Your being tired is real. Your shock that it is all happening so fast is HONEST. Please don't feel that you have to be "upbeat" so that you don't "burden" others here. We are each responsible for our feelings. Sharing what you are experiencing is useful to some of us. For those that it is not they don't have to read the posts.

I hope that after all you have given us you give a little more and that you let us share in this final walk with you.

Zarka P.

carolyn45 said:

Yes!
I couldn't agree more with Zarka. This is the place where you can be totally honest and NOT have to sugar coat a thing. It really does sound like your body is beginning to kick you out. That's terrifying and shocking--and real. Anything you want to share is so much more than welcome. I treasure all that you are revealing. Thank you. Loads of Love and Prayers, Carolyn

Dear Linda
I don't normally reply to the emotional posts on this board, because I feel anything I may have to say is so inadequate, but my heart hurts for you. I hope you are able to find some strength to rally so that you can enjoy the time you have left. You have truly been an inspiration for us all not only in how you have fought the good fight, but also in how you are facing the end. Thank you from the bottom of my heart. Laura

lindaprocopio said:

Update
(I typed this up as a response to a Private Message, and thought it would make an edequate update for all of you wonderful supportive women. I'm doing my best. My sister and her husband slept over last night because we had a freak October snowstorm, so we had a nice morning with them. Then my grandson had his playoff game at 2. Thus far, they are undefeated, so I didn't want to miss that. But even as I try and 'live large', I can see that my body would SOOO rather be in bed than pushing myself.

Suddenly I seem to have all kinds of new symptoms: bleeding hemmoroids (which I've never had but I was told were par for the course with all this fluid pressure), and after the football game my legs were swollen from the feet up over my knees to my thighs, & that was a 1st ever. And I remember these very same symptoms happening to Dorian and Nancy during their final weeks. Then this all seems very real. I have 24 hour support from hospice and called them and they just had me take an extra water pill (& potassium), elevate my feet higher than my heart, and use Preparation H. I'm to phone tomorrow if my legs remain swollen; otherwise I see them here on Tuesday. I am going to push for sonogram-guided paracentesis and see if that relieves some of this horrible pressure. I'll try it once and if the fluid just rushes back, maybe not again.

But I'd PLANNED to go with my family to a restaurant for their little Playoff Victory party, and I just wasn't up to it when the game was over. That's not good. I don't want curling up in bed to be a more attractive option for me than a party. not yet. Today it feels like things are moving really quickly, and not in a good direction.

Thanks, everyone.

((((Linda))))
When my aunt was having ascites.....each time they drained it she felt better for a week or so. I think having the draining will perk you up some!!! I think the swelling and hemeroids are from the fluid.....just like when you are pregnant. I hope you have a nice day today and get to smile or laugh at something. You are in my thoughts!

Susan

Mum2bellaandwilliam said:

Choosing to conserve the beauty of the time we have left.
Linda,

Linda , i been away for a while , I am saddened to read your post.
However, one line I will take with me on the rest of my mums journey is the heading of this post.
Mum went to the onc today , and one of mums options was to do nothing, I couldn't get my head around this and thought this is not even an option. After reading this line I understand why he said it, I think you are so brave, a true inspiration. Praying for your comfort and for beauty in the time you have left. Xxx liz xxx

Linda,
I admire your
Linda,
I admire your honesty. Please keep us updated on how you are feeling. This place is for us to keep it real and I am glad you are.

lindaprocopio said:

I guess it's time I bit the bullet & let you all know what's up.
I think each of the women who have reached this stage of their journey wonder if sharing a poor prognosis does this Discussion Board more harm than good. I remember all too well the dispair and grief that rocked our little world here when we lost Nancy, Dorian, Bonnie, Theresa, (too many others)....and my own personal reaction of sincere grief all mixed up with identification with the dying warrior's mortality and fragility. Then I think of the newbies here and the bright hope they have that I don't want to chip away at. I think that's why you see so many of our sisters here pulling away when they turn down this last path.

And it's also hard to tell it one more time when it seems like for days all I've done is try and spin this for my family and friends, one after the next, into something they can handle for now. And I know you all won't be as easy to buy into a rose-colored version. So I'll just tell you straight.

I have liver failure. All of those scans and tests showed no blackages anywhere, nothing 'fixable' anywhere. The good parts of my liver just haven't stepped up and picked up the work load of the bad parts of my liver we so successfully attacked with the radioembolism. Although my RBC, WBC, even platelets are all good and my vital signs excellent, my oncologist believes that additional treatment now would shorten my life and destroy the good quality of life I can still enjoy if I step away from the battle now. My eyes are slightly yellow with jaundice and I've gained 5 pounds with the ascites which feels HUGE to me, but apparently is considered a small amount still by my team. (We will do sonogram-guided parasentesis is I get really uncomfortable and I am taking 2 water pills daily to help with it.) I got opinions from a liver specialist and the doctor who did my radioembolism and everyone agreed. My acites sample had lots of malignant cells in it, so even if my liver kicks in I would still have new cancer to deal with. I've decided that palliative medicine can be a strategy, too, to staying alive as long as you can. I'm drinking 4 cans daily of Replete ($10/day!!) and eat whenever I have any appetite and WORK at that. I am consciously trying to make the most of every day and do a little work in the garden when it's sunny.

I met with palliative medicine yesterday and hospice is coming out tomorrow so that we can have an established relationship when the time comes that I need them. Palliative Care has already set me up on a pain management regime and bowel management regime. I never took painkillers the 3 years I've had cancer, and I am surprised to see how they can make it possible for me to do MORE, and have more fun, since I don't have the constant discomfort. I don't think of myself as in pain, just uncomfortable, but when I take those Oxicodone all that melts away. I learned something here.

I've always said I'd go down swinging, fighting it until the end, as I'm sure so many of you have. But when it doesn't make sense, choosing to conserve the beauty of the time you have left can be just as brave a choice. I hope you all can respect that. Please keep me in your prayers.

Sending you
some virtual hugs and my very best wishes

lindaprocopio said:

Update
(I typed this up as a response to a Private Message, and thought it would make an edequate update for all of you wonderful supportive women. I'm doing my best. My sister and her husband slept over last night because we had a freak October snowstorm, so we had a nice morning with them. Then my grandson had his playoff game at 2. Thus far, they are undefeated, so I didn't want to miss that. But even as I try and 'live large', I can see that my body would SOOO rather be in bed than pushing myself.

Suddenly I seem to have all kinds of new symptoms: bleeding hemmoroids (which I've never had but I was told were par for the course with all this fluid pressure), and after the football game my legs were swollen from the feet up over my knees to my thighs, & that was a 1st ever. And I remember these very same symptoms happening to Dorian and Nancy during their final weeks. Then this all seems very real. I have 24 hour support from hospice and called them and they just had me take an extra water pill (& potassium), elevate my feet higher than my heart, and use Preparation H. I'm to phone tomorrow if my legs remain swollen; otherwise I see them here on Tuesday. I am going to push for sonogram-guided paracentesis and see if that relieves some of this horrible pressure. I'll try it once and if the fluid just rushes back, maybe not again.

But I'd PLANNED to go with my family to a restaurant for their little Playoff Victory party, and I just wasn't up to it when the game was over. That's not good. I don't want curling up in bed to be a more attractive option for me than a party. not yet. Today it feels like things are moving really quickly, and not in a good direction.

Thanks, everyone.

Dearest Linda
With a very heavy heart I send you my biggest tender hug to thank you for helping me find the information available (despite such an alarming dearth) at the various times I have had to make decisions about my treatment for UPSC. With your encouragement I have learned to be my own best advocate. I celebrate having the ACS Uterine Cancer Board where a wealth of information can be found from real women dealing with various types of uterine cancer at all stages.

I am glad to see that you are continuing to make your own best decisions during this most challenging of times. Thank you, too, for giving us some glimpses of your loving family. I will always cherish your friendship and your enthusiasm.

I have extensive gardens, and you are always by my side there.

Sally

lindaprocopio said:

I guess it's time I bit the bullet & let you all know what's up.
I think each of the women who have reached this stage of their journey wonder if sharing a poor prognosis does this Discussion Board more harm than good. I remember all too well the dispair and grief that rocked our little world here when we lost Nancy, Dorian, Bonnie, Theresa, (too many others)....and my own personal reaction of sincere grief all mixed up with identification with the dying warrior's mortality and fragility. Then I think of the newbies here and the bright hope they have that I don't want to chip away at. I think that's why you see so many of our sisters here pulling away when they turn down this last path.

And it's also hard to tell it one more time when it seems like for days all I've done is try and spin this for my family and friends, one after the next, into something they can handle for now. And I know you all won't be as easy to buy into a rose-colored version. So I'll just tell you straight.

I have liver failure. All of those scans and tests showed no blackages anywhere, nothing 'fixable' anywhere. The good parts of my liver just haven't stepped up and picked up the work load of the bad parts of my liver we so successfully attacked with the radioembolism. Although my RBC, WBC, even platelets are all good and my vital signs excellent, my oncologist believes that additional treatment now would shorten my life and destroy the good quality of life I can still enjoy if I step away from the battle now. My eyes are slightly yellow with jaundice and I've gained 5 pounds with the ascites which feels HUGE to me, but apparently is considered a small amount still by my team. (We will do sonogram-guided parasentesis is I get really uncomfortable and I am taking 2 water pills daily to help with it.) I got opinions from a liver specialist and the doctor who did my radioembolism and everyone agreed. My acites sample had lots of malignant cells in it, so even if my liver kicks in I would still have new cancer to deal with. I've decided that palliative medicine can be a strategy, too, to staying alive as long as you can. I'm drinking 4 cans daily of Replete ($10/day!!) and eat whenever I have any appetite and WORK at that. I am consciously trying to make the most of every day and do a little work in the garden when it's sunny.

I met with palliative medicine yesterday and hospice is coming out tomorrow so that we can have an established relationship when the time comes that I need them. Palliative Care has already set me up on a pain management regime and bowel management regime. I never took painkillers the 3 years I've had cancer, and I am surprised to see how they can make it possible for me to do MORE, and have more fun, since I don't have the constant discomfort. I don't think of myself as in pain, just uncomfortable, but when I take those Oxicodone all that melts away. I learned something here.

I've always said I'd go down swinging, fighting it until the end, as I'm sure so many of you have. But when it doesn't make sense, choosing to conserve the beauty of the time you have left can be just as brave a choice. I hope you all can respect that. Please keep me in your prayers.

Dear Linda
I do not reply to many posts on this board, but I do sign in an read other's stories and advice almost daily. You are my favorite. Your willingness to share what you have experienced and learned in such an honest and straight-forward way has helped me many, many times. Thank you. You are in my prayers.

Love, Jo

lindaprocopio said:

Update
(I typed this up as a response to a Private Message, and thought it would make an edequate update for all of you wonderful supportive women. I'm doing my best. My sister and her husband slept over last night because we had a freak October snowstorm, so we had a nice morning with them. Then my grandson had his playoff game at 2. Thus far, they are undefeated, so I didn't want to miss that. But even as I try and 'live large', I can see that my body would SOOO rather be in bed than pushing myself.

Suddenly I seem to have all kinds of new symptoms: bleeding hemmoroids (which I've never had but I was told were par for the course with all this fluid pressure), and after the football game my legs were swollen from the feet up over my knees to my thighs, & that was a 1st ever. And I remember these very same symptoms happening to Dorian and Nancy during their final weeks. Then this all seems very real. I have 24 hour support from hospice and called them and they just had me take an extra water pill (& potassium), elevate my feet higher than my heart, and use Preparation H. I'm to phone tomorrow if my legs remain swollen; otherwise I see them here on Tuesday. I am going to push for sonogram-guided paracentesis and see if that relieves some of this horrible pressure. I'll try it once and if the fluid just rushes back, maybe not again.

But I'd PLANNED to go with my family to a restaurant for their little Playoff Victory party, and I just wasn't up to it when the game was over. That's not good. I don't want curling up in bed to be a more attractive option for me than a party. not yet. Today it feels like things are moving really quickly, and not in a good direction.

Thanks, everyone.

Thinking of you
Dear linda.. just wanted you to know that I'm thinking of you and hoping you're getting relief from your swollen legs...... ((((HUGS)))) Maria