Linda P. Where are you?

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.

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!

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!

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!

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!

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!

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.

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!

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!