Linda P. Where are you?

lindaprocopio

Mwee said:

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

Had 3 1/2 litres fluid drawn in parcentesis today. :-)
I feel much more comfortable since I had the ascites fluid drained off today. I am still carrying fluid on my belly, but the horrible pressure is relieved. The doctor said that if I keep my feet elevated a lot of the leg edema will be able to move back up and I may be able to pass a lot of the leg fluid with my urine now that there is less downward pressure. The leg elevation sure helps with the swelling and I am sleeping with my feet propped up. Last night was a horrible night. I was thinking "Just shoot me now and put me out of my misery." The left side up under my ribcage was pulsating this awful pain so sharp it brought tears to my eyes and literally took my breath away. I took 3 Oxicodones at 4AM and had to try and sleep sitting up because I felt so bad lying flat. I had the dry heaves on the way to the doctor and again on my way home from my treatment today from fasting The doctor today said that, based on the pulsing and the place of the pain, this was bowel-related. So maybe with some of this pressure off that will all settle down. I think I was right to fear ascites; it seems to affect everything in your torso in some negative way. But I am happy with how simple the paracentesis is, and if I have to have it drained frequently, I won't hesitate.

Tomorrow I am going out with 'the girls' to The Victorian Lady for a fancy lunch. Last night I would never have believed that I could do that and was planning to cancel (since I need my legs propped up and I have to eat in such small quantities.) But the paracentesis has made me feel comfortable enough to go. The doctor even recommended some of their better dishes, as he goes there often. I left feeling more optimistic and a lot lighter!

txtrisha55

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.

Praying for you.
I am a newbie here but I understand some as my Mother fought a battle with cancer and we (my sister and I) were there for it.

Spend the time with your family and friends and say all those things that you ever wanted to say to them.

Thank you for sharing your journey on this boards, the good and the bad. I hope you find some comfort from the pain.

trish

Tethys41

lindaprocopio said:

Had 3 1/2 litres fluid drawn in parcentesis today. :-)
I feel much more comfortable since I had the ascites fluid drained off today. I am still carrying fluid on my belly, but the horrible pressure is relieved. The doctor said that if I keep my feet elevated a lot of the leg edema will be able to move back up and I may be able to pass a lot of the leg fluid with my urine now that there is less downward pressure. The leg elevation sure helps with the swelling and I am sleeping with my feet propped up. Last night was a horrible night. I was thinking "Just shoot me now and put me out of my misery." The left side up under my ribcage was pulsating this awful pain so sharp it brought tears to my eyes and literally took my breath away. I took 3 Oxicodones at 4AM and had to try and sleep sitting up because I felt so bad lying flat. I had the dry heaves on the way to the doctor and again on my way home from my treatment today from fasting The doctor today said that, based on the pulsing and the place of the pain, this was bowel-related. So maybe with some of this pressure off that will all settle down. I think I was right to fear ascites; it seems to affect everything in your torso in some negative way. But I am happy with how simple the paracentesis is, and if I have to have it drained frequently, I won't hesitate.

Tomorrow I am going out with 'the girls' to The Victorian Lady for a fancy lunch. Last night I would never have believed that I could do that and was planning to cancel (since I need my legs propped up and I have to eat in such small quantities.) But the paracentesis has made me feel comfortable enough to go. The doctor even recommended some of their better dishes, as he goes there often. I left feeling more optimistic and a lot lighter!

Ascites
Linda,
I'm so glad to hear that the paracenteis went well. When I was dealing with repeated accumulation of ascites, I found that I could eat like a horse right after paracentesis, but as it accumulated again, my ability to eat dwindled. My motto became, "Eat while you can!" Hope you don't have to race to fill your belly. Thinking of you often.
Kate

HellieC

lindaprocopio said:

Had 3 1/2 litres fluid drawn in parcentesis today. :-)
I feel much more comfortable since I had the ascites fluid drained off today. I am still carrying fluid on my belly, but the horrible pressure is relieved. The doctor said that if I keep my feet elevated a lot of the leg edema will be able to move back up and I may be able to pass a lot of the leg fluid with my urine now that there is less downward pressure. The leg elevation sure helps with the swelling and I am sleeping with my feet propped up. Last night was a horrible night. I was thinking "Just shoot me now and put me out of my misery." The left side up under my ribcage was pulsating this awful pain so sharp it brought tears to my eyes and literally took my breath away. I took 3 Oxicodones at 4AM and had to try and sleep sitting up because I felt so bad lying flat. I had the dry heaves on the way to the doctor and again on my way home from my treatment today from fasting The doctor today said that, based on the pulsing and the place of the pain, this was bowel-related. So maybe with some of this pressure off that will all settle down. I think I was right to fear ascites; it seems to affect everything in your torso in some negative way. But I am happy with how simple the paracentesis is, and if I have to have it drained frequently, I won't hesitate.

Tomorrow I am going out with 'the girls' to The Victorian Lady for a fancy lunch. Last night I would never have believed that I could do that and was planning to cancel (since I need my legs propped up and I have to eat in such small quantities.) But the paracentesis has made me feel comfortable enough to go. The doctor even recommended some of their better dishes, as he goes there often. I left feeling more optimistic and a lot lighter!

Oh Linda - what a night!
Bless your heart - what a terrible night that sounded. I am so pleased that you have gained some relief from the paracentesis and I hope that it can be repeated as and when you need it.

I hope you have a wonderful "girly" lunch. It doesn't matter if you can't eat a lot - just getting out and "being normal" is the most important thing.

Thinking of you
Helen xxx

Kaleena

lindaprocopio said:

Had 3 1/2 litres fluid drawn in parcentesis today. :-)
I feel much more comfortable since I had the ascites fluid drained off today. I am still carrying fluid on my belly, but the horrible pressure is relieved. The doctor said that if I keep my feet elevated a lot of the leg edema will be able to move back up and I may be able to pass a lot of the leg fluid with my urine now that there is less downward pressure. The leg elevation sure helps with the swelling and I am sleeping with my feet propped up. Last night was a horrible night. I was thinking "Just shoot me now and put me out of my misery." The left side up under my ribcage was pulsating this awful pain so sharp it brought tears to my eyes and literally took my breath away. I took 3 Oxicodones at 4AM and had to try and sleep sitting up because I felt so bad lying flat. I had the dry heaves on the way to the doctor and again on my way home from my treatment today from fasting The doctor today said that, based on the pulsing and the place of the pain, this was bowel-related. So maybe with some of this pressure off that will all settle down. I think I was right to fear ascites; it seems to affect everything in your torso in some negative way. But I am happy with how simple the paracentesis is, and if I have to have it drained frequently, I won't hesitate.

Tomorrow I am going out with 'the girls' to The Victorian Lady for a fancy lunch. Last night I would never have believed that I could do that and was planning to cancel (since I need my legs propped up and I have to eat in such small quantities.) But the paracentesis has made me feel comfortable enough to go. The doctor even recommended some of their better dishes, as he goes there often. I left feeling more optimistic and a lot lighter!

Linda:
I am glad you were
Linda:

I am glad you were able to remove some of that fluid and at least you have relieved some of that horrible pressure. I am also glad that your are going to the Victorian Lady luncheon. It sounded so wonderful the last time you went and I wouldn't want you to miss it.

My best to you! (((Linda)))

Kathy

zinaida

lindaprocopio said:

Had 3 1/2 litres fluid drawn in parcentesis today. :-)
I feel much more comfortable since I had the ascites fluid drained off today. I am still carrying fluid on my belly, but the horrible pressure is relieved. The doctor said that if I keep my feet elevated a lot of the leg edema will be able to move back up and I may be able to pass a lot of the leg fluid with my urine now that there is less downward pressure. The leg elevation sure helps with the swelling and I am sleeping with my feet propped up. Last night was a horrible night. I was thinking "Just shoot me now and put me out of my misery." The left side up under my ribcage was pulsating this awful pain so sharp it brought tears to my eyes and literally took my breath away. I took 3 Oxicodones at 4AM and had to try and sleep sitting up because I felt so bad lying flat. I had the dry heaves on the way to the doctor and again on my way home from my treatment today from fasting The doctor today said that, based on the pulsing and the place of the pain, this was bowel-related. So maybe with some of this pressure off that will all settle down. I think I was right to fear ascites; it seems to affect everything in your torso in some negative way. But I am happy with how simple the paracentesis is, and if I have to have it drained frequently, I won't hesitate.

Tomorrow I am going out with 'the girls' to The Victorian Lady for a fancy lunch. Last night I would never have believed that I could do that and was planning to cancel (since I need my legs propped up and I have to eat in such small quantities.) But the paracentesis has made me feel comfortable enough to go. The doctor even recommended some of their better dishes, as he goes there often. I left feeling more optimistic and a lot lighter!

Linda! I feel blessed by
Linda! I feel blessed by meeting with you on this board. Every time, when I work on my little garden, I think about you. I see in my eyes your beautiful garden: roses and hydrangea, and other colorful flowers, and it looks big and rich. I wish you have enough strength to go through whatever in front of you. Love you, Zina.

Ro10

lindaprocopio said:

Had 3 1/2 litres fluid drawn in parcentesis today. :-)
I feel much more comfortable since I had the ascites fluid drained off today. I am still carrying fluid on my belly, but the horrible pressure is relieved. The doctor said that if I keep my feet elevated a lot of the leg edema will be able to move back up and I may be able to pass a lot of the leg fluid with my urine now that there is less downward pressure. The leg elevation sure helps with the swelling and I am sleeping with my feet propped up. Last night was a horrible night. I was thinking "Just shoot me now and put me out of my misery." The left side up under my ribcage was pulsating this awful pain so sharp it brought tears to my eyes and literally took my breath away. I took 3 Oxicodones at 4AM and had to try and sleep sitting up because I felt so bad lying flat. I had the dry heaves on the way to the doctor and again on my way home from my treatment today from fasting The doctor today said that, based on the pulsing and the place of the pain, this was bowel-related. So maybe with some of this pressure off that will all settle down. I think I was right to fear ascites; it seems to affect everything in your torso in some negative way. But I am happy with how simple the paracentesis is, and if I have to have it drained frequently, I won't hesitate.

Tomorrow I am going out with 'the girls' to The Victorian Lady for a fancy lunch. Last night I would never have believed that I could do that and was planning to cancel (since I need my legs propped up and I have to eat in such small quantities.) But the paracentesis has made me feel comfortable enough to go. The doctor even recommended some of their better dishes, as he goes there often. I left feeling more optimistic and a lot lighter!

Linda I am so glad you are feeling better
So sorry you had such a miserable night last night, but so happy to hear you had the paracentesis. 3 1/2 liters is a lot of fluid, no wonder you were so uncomfortable. Enjoy your lunch with the girls. So glad you are going to be able to go. Glad you are feeling more optimistic. Thanks for sharing. In peace and caring.

Robkel7

lindaprocopio said:

Had 3 1/2 litres fluid drawn in parcentesis today. :-)
I feel much more comfortable since I had the ascites fluid drained off today. I am still carrying fluid on my belly, but the horrible pressure is relieved. The doctor said that if I keep my feet elevated a lot of the leg edema will be able to move back up and I may be able to pass a lot of the leg fluid with my urine now that there is less downward pressure. The leg elevation sure helps with the swelling and I am sleeping with my feet propped up. Last night was a horrible night. I was thinking "Just shoot me now and put me out of my misery." The left side up under my ribcage was pulsating this awful pain so sharp it brought tears to my eyes and literally took my breath away. I took 3 Oxicodones at 4AM and had to try and sleep sitting up because I felt so bad lying flat. I had the dry heaves on the way to the doctor and again on my way home from my treatment today from fasting The doctor today said that, based on the pulsing and the place of the pain, this was bowel-related. So maybe with some of this pressure off that will all settle down. I think I was right to fear ascites; it seems to affect everything in your torso in some negative way. But I am happy with how simple the paracentesis is, and if I have to have it drained frequently, I won't hesitate.

Tomorrow I am going out with 'the girls' to The Victorian Lady for a fancy lunch. Last night I would never have believed that I could do that and was planning to cancel (since I need my legs propped up and I have to eat in such small quantities.) But the paracentesis has made me feel comfortable enough to go. The doctor even recommended some of their better dishes, as he goes there often. I left feeling more optimistic and a lot lighter!

Hi Linda....
I am so glad you got some relief. I had an awful time after surgery with fluid building up so I totally understand. I think of you and pray for you. I hope your lunch is perfect. p.s. I think you are amazing.

Robin

MK_4Dani

lindaprocopio said:

Had 3 1/2 litres fluid drawn in parcentesis today. :-)
I feel much more comfortable since I had the ascites fluid drained off today. I am still carrying fluid on my belly, but the horrible pressure is relieved. The doctor said that if I keep my feet elevated a lot of the leg edema will be able to move back up and I may be able to pass a lot of the leg fluid with my urine now that there is less downward pressure. The leg elevation sure helps with the swelling and I am sleeping with my feet propped up. Last night was a horrible night. I was thinking "Just shoot me now and put me out of my misery." The left side up under my ribcage was pulsating this awful pain so sharp it brought tears to my eyes and literally took my breath away. I took 3 Oxicodones at 4AM and had to try and sleep sitting up because I felt so bad lying flat. I had the dry heaves on the way to the doctor and again on my way home from my treatment today from fasting The doctor today said that, based on the pulsing and the place of the pain, this was bowel-related. So maybe with some of this pressure off that will all settle down. I think I was right to fear ascites; it seems to affect everything in your torso in some negative way. But I am happy with how simple the paracentesis is, and if I have to have it drained frequently, I won't hesitate.

Tomorrow I am going out with 'the girls' to The Victorian Lady for a fancy lunch. Last night I would never have believed that I could do that and was planning to cancel (since I need my legs propped up and I have to eat in such small quantities.) But the paracentesis has made me feel comfortable enough to go. The doctor even recommended some of their better dishes, as he goes there often. I left feeling more optimistic and a lot lighter!

Oh Linda
I am glad you have some relief. I pray and think of you daily for comfort and peace.
Hugs to you and your family.
Mary

Susan777

lindaprocopio said:

Had 3 1/2 litres fluid drawn in parcentesis today. :-)
I feel much more comfortable since I had the ascites fluid drained off today. I am still carrying fluid on my belly, but the horrible pressure is relieved. The doctor said that if I keep my feet elevated a lot of the leg edema will be able to move back up and I may be able to pass a lot of the leg fluid with my urine now that there is less downward pressure. The leg elevation sure helps with the swelling and I am sleeping with my feet propped up. Last night was a horrible night. I was thinking "Just shoot me now and put me out of my misery." The left side up under my ribcage was pulsating this awful pain so sharp it brought tears to my eyes and literally took my breath away. I took 3 Oxicodones at 4AM and had to try and sleep sitting up because I felt so bad lying flat. I had the dry heaves on the way to the doctor and again on my way home from my treatment today from fasting The doctor today said that, based on the pulsing and the place of the pain, this was bowel-related. So maybe with some of this pressure off that will all settle down. I think I was right to fear ascites; it seems to affect everything in your torso in some negative way. But I am happy with how simple the paracentesis is, and if I have to have it drained frequently, I won't hesitate.

Tomorrow I am going out with 'the girls' to The Victorian Lady for a fancy lunch. Last night I would never have believed that I could do that and was planning to cancel (since I need my legs propped up and I have to eat in such small quantities.) But the paracentesis has made me feel comfortable enough to go. The doctor even recommended some of their better dishes, as he goes there often. I left feeling more optimistic and a lot lighter!

Glad to hear you got some relief
I hope you have a wonderful lunch with your girls! Having the fluid drained makes a huge difference. When my Aunt got to that point in her battle w/OCV she would feel better for several weeks. When the fluid builds up it is like being 10 months pregnant with the edema in the legs and having a tough time getting comfortable. Enjoy your lunch....smiles and laughs!

Susan

cleo

txtrisha55 said:

Praying for you.
I am a newbie here but I understand some as my Mother fought a battle with cancer and we (my sister and I) were there for it.

Spend the time with your family and friends and say all those things that you ever wanted to say to them.

Thank you for sharing your journey on this boards, the good and the bad. I hope you find some comfort from the pain.

trish

A gift from Linda
I was with a wonderful friend of 25 years standing when she died of cancer 10 years ago. Our kids grew up together and we shared the good/bad /ugly of life. I still regret the things that I did not say when I had the chance...but she also never voiced her true situation to me, so I did not broach it, and we looked toward the 'miracle'. Linda, you have made it possible for everyone to be honest with you, and that is a gift.

Celia

carolyn45

lindaprocopio said:

Had 3 1/2 litres fluid drawn in parcentesis today. :-)
I feel much more comfortable since I had the ascites fluid drained off today. I am still carrying fluid on my belly, but the horrible pressure is relieved. The doctor said that if I keep my feet elevated a lot of the leg edema will be able to move back up and I may be able to pass a lot of the leg fluid with my urine now that there is less downward pressure. The leg elevation sure helps with the swelling and I am sleeping with my feet propped up. Last night was a horrible night. I was thinking "Just shoot me now and put me out of my misery." The left side up under my ribcage was pulsating this awful pain so sharp it brought tears to my eyes and literally took my breath away. I took 3 Oxicodones at 4AM and had to try and sleep sitting up because I felt so bad lying flat. I had the dry heaves on the way to the doctor and again on my way home from my treatment today from fasting The doctor today said that, based on the pulsing and the place of the pain, this was bowel-related. So maybe with some of this pressure off that will all settle down. I think I was right to fear ascites; it seems to affect everything in your torso in some negative way. But I am happy with how simple the paracentesis is, and if I have to have it drained frequently, I won't hesitate.

Tomorrow I am going out with 'the girls' to The Victorian Lady for a fancy lunch. Last night I would never have believed that I could do that and was planning to cancel (since I need my legs propped up and I have to eat in such small quantities.) But the paracentesis has made me feel comfortable enough to go. The doctor even recommended some of their better dishes, as he goes there often. I left feeling more optimistic and a lot lighter!

Holy Toledo!
3 1/2 liters is an unbelievable amount of fluid. No wonder you feel so much better! Hope you have a fabulous fancy lunch and a marvelous time with your friends. You're still living, and that is an inspiration to me.

mopar

lindaprocopio said:

Had 3 1/2 litres fluid drawn in parcentesis today. :-)
I feel much more comfortable since I had the ascites fluid drained off today. I am still carrying fluid on my belly, but the horrible pressure is relieved. The doctor said that if I keep my feet elevated a lot of the leg edema will be able to move back up and I may be able to pass a lot of the leg fluid with my urine now that there is less downward pressure. The leg elevation sure helps with the swelling and I am sleeping with my feet propped up. Last night was a horrible night. I was thinking "Just shoot me now and put me out of my misery." The left side up under my ribcage was pulsating this awful pain so sharp it brought tears to my eyes and literally took my breath away. I took 3 Oxicodones at 4AM and had to try and sleep sitting up because I felt so bad lying flat. I had the dry heaves on the way to the doctor and again on my way home from my treatment today from fasting The doctor today said that, based on the pulsing and the place of the pain, this was bowel-related. So maybe with some of this pressure off that will all settle down. I think I was right to fear ascites; it seems to affect everything in your torso in some negative way. But I am happy with how simple the paracentesis is, and if I have to have it drained frequently, I won't hesitate.

Tomorrow I am going out with 'the girls' to The Victorian Lady for a fancy lunch. Last night I would never have believed that I could do that and was planning to cancel (since I need my legs propped up and I have to eat in such small quantities.) But the paracentesis has made me feel comfortable enough to go. The doctor even recommended some of their better dishes, as he goes there often. I left feeling more optimistic and a lot lighter!

ENJOY YOUR LUNCHEON!
We can all learn a lesson from you, Linda about living 'in the moment'. You continue to amaze me, and bless me with your honesty and strength. Glad to hear you've had some relief, and I hope that your luncheon is nothing but joy-filled!

(((HUGS)))
Monika

TiggersDoBounce

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.

Linda
Thank you for being courageous in your reply. May each day be filled with less pain and more joy.

Sending hugs out to you. Please keep us updated. We learn so much from you...

Laurie

Cafewoman53

cleo said:

A gift from Linda
I was with a wonderful friend of 25 years standing when she died of cancer 10 years ago. Our kids grew up together and we shared the good/bad /ugly of life. I still regret the things that I did not say when I had the chance...but she also never voiced her true situation to me, so I did not broach it, and we looked toward the 'miracle'. Linda, you have made it possible for everyone to be honest with you, and that is a gift.

Celia

Bless you Linda !
May you continue to find ways of getting comfortable. I use a bean bag chair to prop up my legs ,the pillows tend to pop out from under me.
Colleen

leesag

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.

An alternative to "going" to a party
Let your family know your concerns and your disappointment in not feeling up to going out... I'm willing to bet that they would be more than willing to bring in carryout food (most restaurants provide this service) to you so that you can be part of the celebrations. We did that frequently when Ken's mom was sick, and also when I was recovering from my surgeries. My friends were more than willing to come watch movies, have dinner or just hang out here!

Thinking of you daily.
Many hugs and prayers winging towards you!
Leesa

lindaprocopio

leesag said:

An alternative to "going" to a party
Let your family know your concerns and your disappointment in not feeling up to going out... I'm willing to bet that they would be more than willing to bring in carryout food (most restaurants provide this service) to you so that you can be part of the celebrations. We did that frequently when Ken's mom was sick, and also when I was recovering from my surgeries. My friends were more than willing to come watch movies, have dinner or just hang out here!

Thinking of you daily.
Many hugs and prayers winging towards you!
Leesa

Had my 'tea' with the girls this afternoon
If any of the last 4 chemos drugs I tried last had worked at all for me, I probably would have shopped around and found an oncologist willing to give it to me. But since chemo has steadily allowed disease progression (even while I was TAKING it!), I knew it was time for me to stop treatments and just work on preserving my quality of life for the short amount of time I have left. Lately I feel that I am going downhill pretty fast, but I also think that maybe it just feels like that because I am taking so MANY new meds and my body is trying to find a balance with all that. I never had to take anti-nausea drugs or pain killers in my 3 years of cancer treqatments, so introducing those pills and potions (which I DO need in order to get up and do things instead of curling up in bed) has opened up new constipation and nausea challenges. So I have have 3 new drugs to deal with that. And the increase in my bilirubin levels causes itching and they gave me 3 drugs (2 oral, a topical) to manage that. So that's a lot of new medication to start in the same week. I think once I get used to ingesting all the new meds and we get the balance just right, I'll feel so much better. Hope so. Hospice is going to come in twice weekly to help us accomplish that.

I've had a couple of rough nights but am happy to have gone out with my girlfriends today. (Although, honestly, I got so tired and uncomfortable by the time we left the restaurant that I wanted to cry.) Without the parensentesis I don't think I would have been able to but I am so much more comfortable now. And I needed to get away from my loving and grieving family for a little bit and gossip and giggle. My bots and DIL have reacted to my hospice decision by taking medical leave from their work to be with me more, and they want to move up Thanksgiving, afraid I won't be alive in 3 weeks apparently. Now ME personally, I feel pretty confident I have more time than that! I had creme brulee' for dessert; does that sound like someone who will be dying any day now?

Thank you all for your love and support!

taiga

lindaprocopio said:

Had my 'tea' with the girls this afternoon
If any of the last 4 chemos drugs I tried last had worked at all for me, I probably would have shopped around and found an oncologist willing to give it to me. But since chemo has steadily allowed disease progression (even while I was TAKING it!), I knew it was time for me to stop treatments and just work on preserving my quality of life for the short amount of time I have left. Lately I feel that I am going downhill pretty fast, but I also think that maybe it just feels like that because I am taking so MANY new meds and my body is trying to find a balance with all that. I never had to take anti-nausea drugs or pain killers in my 3 years of cancer treqatments, so introducing those pills and potions (which I DO need in order to get up and do things instead of curling up in bed) has opened up new constipation and nausea challenges. So I have have 3 new drugs to deal with that. And the increase in my bilirubin levels causes itching and they gave me 3 drugs (2 oral, a topical) to manage that. So that's a lot of new medication to start in the same week. I think once I get used to ingesting all the new meds and we get the balance just right, I'll feel so much better. Hope so. Hospice is going to come in twice weekly to help us accomplish that.

I've had a couple of rough nights but am happy to have gone out with my girlfriends today. (Although, honestly, I got so tired and uncomfortable by the time we left the restaurant that I wanted to cry.) Without the parensentesis I don't think I would have been able to but I am so much more comfortable now. And I needed to get away from my loving and grieving family for a little bit and gossip and giggle. My bots and DIL have reacted to my hospice decision by taking medical leave from their work to be with me more, and they want to move up Thanksgiving, afraid I won't be alive in 3 weeks apparently. Now ME personally, I feel pretty confident I have more time than that! I had creme brulee' for dessert; does that sound like someone who will be dying any day now?

Thank you all for your love and support!

Happy for your day out
Linda, I have to say, your posts were the first that caught my eye when I discovered this board in July 2010. I was newly diagnosed and terrified. I have continued to read your responses to the women here and truly appreciate all the information and support you give us. You always seem to be so upbeat and positive and I so appreciate that. One of the first things I thought when I saw your picture was how beautiful you are. I've come to see this past year that not only are you beautiful on the outside, but also on the inside. Take care and have many more outings with your friends. You are thought of often.

lovesanimals

taiga said:

Happy for your day out
Linda, I have to say, your posts were the first that caught my eye when I discovered this board in July 2010. I was newly diagnosed and terrified. I have continued to read your responses to the women here and truly appreciate all the information and support you give us. You always seem to be so upbeat and positive and I so appreciate that. One of the first things I thought when I saw your picture was how beautiful you are. I've come to see this past year that not only are you beautiful on the outside, but also on the inside. Take care and have many more outings with your friends. You are thought of often.

Time With Girlfriends
Even though you ended up tired and uncomfortable, being able to spend time giggling and gossiping with your girlfriends is good. And the creme brulee sounds delicious!

Kelly

nempark

lindaprocopio said:

Had my 'tea' with the girls this afternoon
If any of the last 4 chemos drugs I tried last had worked at all for me, I probably would have shopped around and found an oncologist willing to give it to me. But since chemo has steadily allowed disease progression (even while I was TAKING it!), I knew it was time for me to stop treatments and just work on preserving my quality of life for the short amount of time I have left. Lately I feel that I am going downhill pretty fast, but I also think that maybe it just feels like that because I am taking so MANY new meds and my body is trying to find a balance with all that. I never had to take anti-nausea drugs or pain killers in my 3 years of cancer treqatments, so introducing those pills and potions (which I DO need in order to get up and do things instead of curling up in bed) has opened up new constipation and nausea challenges. So I have have 3 new drugs to deal with that. And the increase in my bilirubin levels causes itching and they gave me 3 drugs (2 oral, a topical) to manage that. So that's a lot of new medication to start in the same week. I think once I get used to ingesting all the new meds and we get the balance just right, I'll feel so much better. Hope so. Hospice is going to come in twice weekly to help us accomplish that.

I've had a couple of rough nights but am happy to have gone out with my girlfriends today. (Although, honestly, I got so tired and uncomfortable by the time we left the restaurant that I wanted to cry.) Without the parensentesis I don't think I would have been able to but I am so much more comfortable now. And I needed to get away from my loving and grieving family for a little bit and gossip and giggle. My bots and DIL have reacted to my hospice decision by taking medical leave from their work to be with me more, and they want to move up Thanksgiving, afraid I won't be alive in 3 weeks apparently. Now ME personally, I feel pretty confident I have more time than that! I had creme brulee' for dessert; does that sound like someone who will be dying any day now?

Thank you all for your love and support!

So glad I found you!!
I too am confident that you have much more time!!!!I hope the meds balances out real quick. What a family!!! Much comfort to you. June
ps. How is hubby handling all this?