Linda P. Where are you?

lindaprocopio

Radioactive34 said:

Linda, in no way are your
Linda, in no way are your post making me any more pessimistic about my prognosis. I have already been called the most pessimistic...I call realist person around. In a way you are infusing me with optimism.

Death and taxes are the only guaranteed things in life. I echo others in saying that at least in this we get to say our goodbyes. We get to be surrounded by love. That makes any pessimism I have dull. Regardless of length of life....I have learned from you and the rest of the Teal sisters how to live with this constant fear.

A good part of the fear is the unknown. You are clearing the path and showing us what may come. When I first posted here, I wrote that I was going to war. And this place was/is my support. This place, filled with women in the same war, was where I was going to come to, when I could not talk to my family or other loved ones. This is where I was going to ask questions I was scared to voice outside. Never did I imagine this support to be filled with so much love. Never did I imagine a group so tightly knit.

I think about you daily. I say prayers for you and your family...for all of us. Thank you so much for helping me deal with my fear of the unknown. Thank you for sharing this. This is priceless. You are priceless.

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

clamryn

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

Yes
Yes, yes, yes.... that is what I wanted to hear. Keep it up Linda. I am so happy that you got a good night's sleep and the meds are under control.

Lots of love to you my teal sister.
Linda

Hissy_Fitz

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

So relieved to hear you are
So relieved to hear you are feeling better. Linda, I am in awe of your courage and grace. Please give us an update as often as you feel up to it.

Carlene

snowbird_11

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

Linda, It is so wonderful
Linda, It is so wonderful that you have such a great support system in place, from your medical team to the hospice overseeing your physical needs to all your family and friends who are there for you! Why, it tires me out just reading all that you are accomplishing every day. Your zest for life continues. Wishing you many moments of joy in each day.
Thank you for sharing this with us.
Annie

Kaleena

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

Glad to hear you are feeling better!
Linda:

I am glad to hear you are feeling better. Your new plan seems to be working and I hope it keeps getting better so that you are up and about again. I am also glad that your pills have been greatly reduced and that at least you finally got a comfortable rest last night.

Thanks for the update. Sending you caring thoughts and prayers.

Kathy

eward

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

xoxoxoxoxo
Love you so much, Linda. Your posts are so informative. You might remember, my mom has PPC/ovarian cancer. Stage 4 at diagnosis 2.5 years ago. You gave me great advice last spring about my mom's fluid retention. She is thin like you and her legs were super swollen. All of her symptoms left her terribly desperate at the time. Mom has also had a right lung catheter for well over a year and a left lung catheter for quite a while, too. The catheters allow she and my dad to drain the fluid and keep her more comfortable. I hope the catheter helps you to be comfortable and not worry about the fluid being too much over the weekend. I remember my mom had the same trouble before her catheters were put in place. Extreme discomfort always happens on the weekend. Murphy's law.

I am glad to hear you still have hope that your liver will kick in and you never know if there is a chemo that they haven't tried that will work. My mom has had varying degrees of success/non-success with the chemos she has been on in the past.

You are an amazing woman. Sharing all of this personal information with all of us is a lifeline for us. I am sending deep gratitude to you for keeping us informed of the details that will help us care for ourselves and our loved ones.

Sending the biggest hug to you,
Eileen

Susan53

NCEllen said:

Eat Dessert First
was my mother's mantra. I went to the Biltmore a couple of weeks ago with my sis and bro in-law and ordered a choc. brownie sundae in a waffle bowl for lunch!
You have offered so much encouragement to me and taught me how to choose to enjoy every moment of life- that advice rings so true.
My hubby is advancing in his prostate ca disease (9 year survivor) and we have both decided that hospice will be a part of our lives when it's time. My best friend of 19 years in NC is the event coordinator for Hospice of Charlotte and I know that sometime in the possibly near future I'll have to have a heart to heart with her - just because it's my family that she will be working with. I do know that hospice is a wonderful organization and the outreach they provide for the whole self being of not only you but family and friends have far reaching positive effects.
As for Thanksgiving - well I used the mantra last week and bought a punkin' pie and dolloped the whipped cream on top. I wasn't waiting. Creme brulee - yep, I think it's on my dessert list for next week for sure.
We're having a pajama run this Sat. in Charlotte for 'Cancers Below the Waist' - started by an organization in Charleston. They contacted the ovarian cancer support group I'm a part of and wanted to donate the funds raised to the ovarian cancer research fund. I'm working as a volunteer and will have your name on my 'PJ's' as well as a list of teal sisters from this board. Research, trials and just fighting the battle will eventually help lead to early diagnosis and eventual cure or management. It's what our sisterhood is all about and keeps us glued together.
I keep you in prayers that you stay comfortable and can satisfy those tasty cravings if even only a taste - it's a good thing. Love, hugs and warm thoughts coming your way always - Ellen

Dear Ellen
That is my motto Eat desert first. I have gone into a resturant and ordered my food and desert at the sametime. I have told the waitress that she would not offend me if she brought my desert out first. I have a pillow a dear girlfriend got for me that is needlepoint and it says Life is too short- Eat your desert first. Thought you might enjoy that. Sharon

Ro10

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

Linda so glad you are more comfortable
So glad you are feeling better, and you have another plan in place. Glad your fentenyl patch is helping you. Happy you are enjoying the visits from you family. As others have said you are amazing. Sounds like the hospice team is helping you and your family. Wishing you peace and comfort. In peace and caring.

lovesanimals

Ro10 said:

Linda so glad you are more comfortable
So glad you are feeling better, and you have another plan in place. Glad your fentenyl patch is helping you. Happy you are enjoying the visits from you family. As others have said you are amazing. Sounds like the hospice team is helping you and your family. Wishing you peace and comfort. In peace and caring.

Thank You
Thank you so much for being concerned about us and for continuing to keep us informed of your journey. The information you've provided is so valuable. Praying with all my heart for you and your family.

Kelly

zarkapopovic

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

Good to Know You are Better
Hi Linda,

I really do appreciate your sharing what is working with us. It sounds like you have a gameplan that has made a big difference in comfort level and allowing you proper rest. Am holding you and yours in my thoughts.

Zarka

srwruns

zarkapopovic said:

Good to Know You are Better
Hi Linda,

I really do appreciate your sharing what is working with us. It sounds like you have a gameplan that has made a big difference in comfort level and allowing you proper rest. Am holding you and yours in my thoughts.

Zarka

Nice to know you are feeling
Nice to know you are feeling better and having some pleasant times with your family.

carolyn45

srwruns said:

Nice to know you are feeling
Nice to know you are feeling better and having some pleasant times with your family.

Wonderful news
I'm so grateful that you are wending your way through so much discomfort into calmer waters. May this new plan bring you many good days and loads of happiness with your many loved ones. It is an amazing gift you are giving all of us.

LaundryQueen

zarkapopovic said:

Good to Know You are Better
Hi Linda,

I really do appreciate your sharing what is working with us. It sounds like you have a gameplan that has made a big difference in comfort level and allowing you proper rest. Am holding you and yours in my thoughts.

Zarka

Anti-psychotic medicine
Just want to let you know that anti-psychotic medications (such as Haldol, Zyprexa, Risperdol, Seroquel, etc.) have an interesting side effect: improved appetite. I have a sister who occasionally needs helped by taking Risperdol for mania & she has commented "you make the most delicious food!" when I know the food just seems extra tasty because of the medication.

Linda, let us know if you notice an oveall improvement in your appetite not just reduced nausea. In low dose, Haldol is very safe. I think anti-psychotic medication should be offered in low dose to anyone going thru chemo who is losing weight from chemo-induced anorexia.

I'm so glad to hear that you are finding your way in your transitional situation. Having the ability to drain the ascites yourself will make such a difference in your comfort level. You are a much loved woman whose life touches many others.

Cindy Bear

awesome
This is just so great. Corned beef and cabbage... next thing we know you'll be chugging green beer and dancing an Irish jig.. you go girl!! I am so happy you are feeling better and sleeping better and enjoying some food..
Big hugs,
Cindy

Mwee

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

sounds like a great plan
I'm so impressed with your plan of action! Being able to release that awful pressure should make you feel so much more comfortable. It's good to hear that you're eating and having to take less meds that constipate.
(((((HUGS)))) Maria

Susan53

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

glad to hear
I was so relieved to hear from you Linda. I was happy to see that you have some new plans and glad that they seem to be working. That is so special that you are able to spend time with many loved ones. Sounds like you have a good schedule going on so you have time for that badly needed nap. Thanks for posting Linda and post again as you feel up to it. You are such an inspiration to all your teal sisters, we love you Linda. Sharon

MaxRudy

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.

Thank you for your courage and resolve...
Your messages have been so informative and helpful to me in trying to figure out different courses of action to fight this dreaded disease. I am sending my heartfelt love and prayers your way. melanie

Tina Brown

Cindy Bear said:

awesome
This is just so great. Corned beef and cabbage... next thing we know you'll be chugging green beer and dancing an Irish jig.. you go girl!! I am so happy you are feeling better and sleeping better and enjoying some food..
Big hugs,
Cindy

God bless Linda
I am so pleased Linda that you have new meds that are able to give you some relief and a better quality of life. So pleased you are strong enough to keep posting as I am enjoying reading your story. Much love to you and your family.

Tina xxx

Radioactive34

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

The plans sound great.

The plans sound great.

MK_4Dani

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

Hanging on every word:
Linda,
I am hanging on every word you write: taking notes, (Replete, Haladol, Fenytal), and praying for your comfort. I was wondering why they weren't putting a drain to relieve pressure. I am glad you are now in control of that aspect.
Sending warm, peaceful thoughts your way.
((((((((((((((((((Linda)))))))))))))
Mary