Papillary Renal Cell Carcinoma- Anyone Experiencing This or is a Survivor?
Comments
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Always have hope,AlwaysHaveHope said:Hi, you two....
Hi, you two.
I'm so sorry if I worried the both of you. I know I've not posted in a long time. I just sat here and caught up with reading your postings.
Its been really hard around here lately. Mom's basically given up (or it seems that way to me). Ever since her oncologist told her a couple of months ago that she was stage 4 and that the fluid buildup was due to cancer cells in her abdomen and that there was no since in scanning her again, and that there was no further treatment options for her...... she's basically been sitting in the chair in the living room ever since. She's having a really hard time breathing and her energy level is non-existant, so she basically has to sit in the living room in her chair all day. Dad has to lift her up out of the chair now, because she can't get up herself due to low energy. Mom just sits or lays there, watches the food network on t.v., and well, doesn't go outside anymore.
Then there was the couple of times within the last month that shes fallen. Her breathing is so hard and energy so low. The first time, she fell in the kitchen floor because she her feet were too heavy for her to lift due to fluid. The second time, she fell after walking back to bed in the middle of the night. It was really scary, because I woke up after 2 in the morning to mom's screaming. Of course, I couldn't lift her, but dad and I worked together. Don't know how we managed to get her back in bed that night. Lifting a person of the floor; its like dead weight. So, now after a couple of scares like that, it's become a realization that mom can't be left sitting at the house alone. Someone always has to be there with her, to make sure she doesn't fall, plus anytime she needs to excuse herself to the restroom, someone has to lift her up and help her there. It's really emotionally difficult when the day comes that you have to help your mom off a toilet. The past two weeks or so, her energy's gotten so poor that she's had to start using a toilet seat sitting next to her bed. (Sorry, I know that may not be exactly what you'll might like to hear).
Mom went to the hospital last week and got out a couple days later. She just couldn't breath. I find it getting harder and harder to not look at her and want to cry. I had one of those moments this evening when she yelled at me. She gets frustrated sometimes and ends up yelling at people around her, which then makes me frustrated. Every day I see a change in her, and it's not for the better. I just wish that by some miracle she could be the mom I used to remember, that cancer wasn't a part of our daily lives, and that she and I could go do things together again. But that's just wishful thinking and I'm making myself tear up now just typing these words.
Our neighbor is really great to us right now. She's what we call the cookie lady. She makes cookies a lot for us and brings them over. She actually made us a lasagne that we ate tonight. That really helps sometimes. I work all day and come home at night, wash dishes, fix dad and I dinner (mom doesn't hardley eat these days, although she's been into the Claussen dill pickles lately), and I run upstairs to my room for "me time". Nights are the only time that I can somewhat have a moment to breath and relax. I'm not complaining though, don't get me wrong. It actually has me worried lately and wondering if one day when mom's not here, will I regret having not spent more time with mom? I don't know, but sometimes I just have to be alone, or I think I'll go nuts...
My sister and I were talking on the phone the other day for over an hour (and cried), one of those days mom was in the hospital. We talked about our fears and everything else you worry about concerning mom's situation. She told me mom had talked about how she was worried about how I would be when she's gone, because I am so attached to her. I wished I didn't know that, now. It makes me upset and want to cry more. I seem to be more and more emotionally upset right now due to not only mom's health being worse, but because frankly I am mad and tired of talking about death and what to do if mom dies and so on....I shouldn't be faced with these situations this early in life.
Mom was told of a new drug out there for Kidney cancer that just came out, don't know what it was called, but she told them no, she didn't want to try it. The way she is so skinny/boney, and her current breathing problems and difficulties getting around, she just feels that it's not worth it. That last treatment really did the number on her and she's paying for it now. Though it saddens me, I can't disagree.
On a happier note, mom's 60th birthday was yesterday. I had to open her present from me and dad for her, but she was surprised and happy about what we gave her. She'd been wanting this chandelier light fixture which is big and matches the light fixture in the entry way, for the living room to replace our weird acting fan. So dad and I went in together and got the light for her.
Tomorrow's my nanny's 89th birthday and we're going to be celebrating it here at the house with everyone. Were going to order Extra Billy's barbeque and I'll be fixing macaroni and a vegetable platter. I'm not very good at this cooking thing, but I've been learning. Mom's been working really hard these past few weeks, when she's not in a hospital, and has been working on her new laptop to put a family cook book together. Last weekend, I actually got to do something I wanted to do for myself....I got to work in my garden, planted seeds and everything. It's supposed to rain here in VA the next couple of days, that means free water for my flowers.
Well,
Maryann, I'm so sorry you had to go off the Nexavar, but I could almost foresee it (the way mom had done so badly on it). That drug's a monster. Are things still going okay with the new drug your on? I'm glad to hear you can get out once and a while. Hope your family and you are doing okay. Let me know.
Dawn, I'm sorry your father-in-law couldn't have surgery, but glad he's trying that trial you were talking about with Maryann. Mom's case was/is like your FIL's, it has spread to her lymphnodes in her abdomen by the time they had discovered it and done surgery. That's what shes suffering from right now. I worry though, about how the cancer is just left there to spread where ever it wants to. Please give your FIL my best wishes and hopes for his health.
To both of you, I am very sorry for worrying you and hope to find you both in good will and health. Please respond, I promise to try to get back in the swing of regular posting with you two. I miss talking with you. (my own fault, I know) Talk with you later.
I am so
Always have hope,
I am so sorry that your mom is in such bad shape that is what I was worried about, and don't worry about worrying us, you are going through the roughest of times and I certianly understand. I'm sure you know that your mom loves you deeply, even if she yells at times, I get that way once in a while, it's the frustration of not being able to do things and having to rely on others for help, and I think there's is a bit of depression mixed in because we know whats going on. It's good that you get some me time you need it, it wont do your mom any good if you burn out both physicaly and mentaly, so do what you need to do and don't feel guilty your mom I'm sure would not want that.
I'm not sure if I told you this before, but my mom died of lung cancer when I was 16, and my dad when I was 30, it's hard at both of those ages and it's not fair that you too have to go through this, I am so sorry for that I wish I could take your pain away, but as you know I can't. I hate what cancer does to people and families, I wish they could find a cure so no more have to go through this, but unfortunatly that day is a long way off, and I am afraid it wont come in our time.
It's a good thing that you got that light fixture she wanted that must have brought a bit of happieness for her and everytime she looks at it she'll feel happy even if it is a brief bit. That is so much more comforting for than you'll ever know, because it is the small things that I think helps us more.
I hate Nexavar, it was working for me, but the side effects made life not worth living, the new drug that her doctor was talking about is called Affinitor, and I am on it now, I am not sure if it is working, the side efects are cough, and tiredness, but very tolerable, I pray that it does what it is supposed to do, because the only other option for me is a clinical trial and I probably wont qualify for one any way so this is the last treatment for me. I am less active now then before, shortness of breath, and tiredness the doctor wants me to sit and eat and that is it, nothing more, my daughter had to plant my flowers for me because when I tried I got so tired that I thought I would pass out, it is really depressing not to be able to even sit and do that. I am not in the same shape as your mom, but I know I am not far off from it, everyone has noticed.
I am going to keep you and your family in my prayers, I wont tell you to think possitive because I know with what you are going through, you need to get through it, this is not ment as an insult what I am about to say, but you might want to see some sort of counselor to help you get through this time, my daughter has been going for months now, she still cries from time to time, but I think it really has helped her. Please hang in there. That old frase God dosn't give you more then you can handle is true, but I still wonder about that. I am going to keep my eyes on this thread, and I want to give you my personal email address: jwagnerjr@rcn.com Please email me I'll give you my phone # if you do, I have unlimited long distance, and I would like to help you in anyway that I can. Please know that I am here for you. I have to go now, but I hope to talk to you soon.
Maryann0 -
Hang in therebangormom said:Always have hope,
I am so
Always have hope,
I am so sorry that your mom is in such bad shape that is what I was worried about, and don't worry about worrying us, you are going through the roughest of times and I certianly understand. I'm sure you know that your mom loves you deeply, even if she yells at times, I get that way once in a while, it's the frustration of not being able to do things and having to rely on others for help, and I think there's is a bit of depression mixed in because we know whats going on. It's good that you get some me time you need it, it wont do your mom any good if you burn out both physicaly and mentaly, so do what you need to do and don't feel guilty your mom I'm sure would not want that.
I'm not sure if I told you this before, but my mom died of lung cancer when I was 16, and my dad when I was 30, it's hard at both of those ages and it's not fair that you too have to go through this, I am so sorry for that I wish I could take your pain away, but as you know I can't. I hate what cancer does to people and families, I wish they could find a cure so no more have to go through this, but unfortunatly that day is a long way off, and I am afraid it wont come in our time.
It's a good thing that you got that light fixture she wanted that must have brought a bit of happieness for her and everytime she looks at it she'll feel happy even if it is a brief bit. That is so much more comforting for than you'll ever know, because it is the small things that I think helps us more.
I hate Nexavar, it was working for me, but the side effects made life not worth living, the new drug that her doctor was talking about is called Affinitor, and I am on it now, I am not sure if it is working, the side efects are cough, and tiredness, but very tolerable, I pray that it does what it is supposed to do, because the only other option for me is a clinical trial and I probably wont qualify for one any way so this is the last treatment for me. I am less active now then before, shortness of breath, and tiredness the doctor wants me to sit and eat and that is it, nothing more, my daughter had to plant my flowers for me because when I tried I got so tired that I thought I would pass out, it is really depressing not to be able to even sit and do that. I am not in the same shape as your mom, but I know I am not far off from it, everyone has noticed.
I am going to keep you and your family in my prayers, I wont tell you to think possitive because I know with what you are going through, you need to get through it, this is not ment as an insult what I am about to say, but you might want to see some sort of counselor to help you get through this time, my daughter has been going for months now, she still cries from time to time, but I think it really has helped her. Please hang in there. That old frase God dosn't give you more then you can handle is true, but I still wonder about that. I am going to keep my eyes on this thread, and I want to give you my personal email address: jwagnerjr@rcn.com Please email me I'll give you my phone # if you do, I have unlimited long distance, and I would like to help you in anyway that I can. Please know that I am here for you. I have to go now, but I hope to talk to you soon.
Maryann
Hi Alwayshavehope and Maryann,
It is so good to hear from you Alwayshavehope! I am deeply saddened for your mom and your family that things are so tough for her right now. Don't worry about us, take care of yourself and your mom.
Along these lines, have you guys thought about respite home care for her? My Grandpa is suffering from endstage alzheimers and my Dad and my Aunt stay with him most of the week. But then once a week they have a health aid come in and stay with him to give everyone a break. This is expensive, but worth every penny for my Dad. Also, I think sometimes insurance may pay for some of this. I only mention this because I think a lot of times everyone focuses on the patient and forgets about taking care of the caregivers! It is mentally and physically exhausting caring for someone with a major illness around the clock. You and your Dad must take care of yourselves and give yourselves a break now and then or you will be useless to your mom. Besides, it would be nice to just spend some quality time with your mom when you are refreshed and someone else can focus on the "care" aspect for a little while. Just know that I am praying and thinking good thoughts for you and your family. I hope at least that your mom can enjoy life a little more in these coming weeks. I am sure she doesn't mean to yell at you, it must be so frustrating for her to feel so bad and to feel helpless and like she has to depend on everyone.
Maryann I am hoping that the Afinitor will at least stop your cancer from progressing. I am encouraged for you that so far you have been able to tolerate the drug. I had no idea that you lost both your parents to cancer. That is unbelievable and I almost have to wonder if there must be some sort of genetic link? You are a lot stronger than I could ever hope to be.
My fil is finally having some side effects from his treatment. He has lost his appetite and is exhausted. Worst of all for him is that he has these sores in his mouth. He is handling this much better than I expected though. He says he expected the side effects and is just going to take it a week at a time. He has been very lucky in his life. He is 70 years old and this is his first major illness so I didn't think he would be able to handle the discomforts of cancer treatment. So far he has surprised me with his strength and determination to get through this.
Well I'll check in later. I've got to get the kids to a birthday party. If either of you need me, my email address is: dawnlanders700@hotmail.com. I am always here for both of you to listen and help in whatever way that I can.
Take care,
Dawn0 -
Hi Dawn and Always havedawnmomofthree said:Hang in there
Hi Alwayshavehope and Maryann,
It is so good to hear from you Alwayshavehope! I am deeply saddened for your mom and your family that things are so tough for her right now. Don't worry about us, take care of yourself and your mom.
Along these lines, have you guys thought about respite home care for her? My Grandpa is suffering from endstage alzheimers and my Dad and my Aunt stay with him most of the week. But then once a week they have a health aid come in and stay with him to give everyone a break. This is expensive, but worth every penny for my Dad. Also, I think sometimes insurance may pay for some of this. I only mention this because I think a lot of times everyone focuses on the patient and forgets about taking care of the caregivers! It is mentally and physically exhausting caring for someone with a major illness around the clock. You and your Dad must take care of yourselves and give yourselves a break now and then or you will be useless to your mom. Besides, it would be nice to just spend some quality time with your mom when you are refreshed and someone else can focus on the "care" aspect for a little while. Just know that I am praying and thinking good thoughts for you and your family. I hope at least that your mom can enjoy life a little more in these coming weeks. I am sure she doesn't mean to yell at you, it must be so frustrating for her to feel so bad and to feel helpless and like she has to depend on everyone.
Maryann I am hoping that the Afinitor will at least stop your cancer from progressing. I am encouraged for you that so far you have been able to tolerate the drug. I had no idea that you lost both your parents to cancer. That is unbelievable and I almost have to wonder if there must be some sort of genetic link? You are a lot stronger than I could ever hope to be.
My fil is finally having some side effects from his treatment. He has lost his appetite and is exhausted. Worst of all for him is that he has these sores in his mouth. He is handling this much better than I expected though. He says he expected the side effects and is just going to take it a week at a time. He has been very lucky in his life. He is 70 years old and this is his first major illness so I didn't think he would be able to handle the discomforts of cancer treatment. So far he has surprised me with his strength and determination to get through this.
Well I'll check in later. I've got to get the kids to a birthday party. If either of you need me, my email address is: dawnlanders700@hotmail.com. I am always here for both of you to listen and help in whatever way that I can.
Take care,
Dawn
Hi Dawn and Always have hope,
I don't know how I missed this post, but I read both of your emails, I was really happy to get them it made my day so thank you very much. I think we have the longest thread here, I am so glad that we have our little group here. I'll be sending those pics hopefully soon.
Thanks again and have a great day and weekend.
Maryann0 -
Hellobangormom said:Hi Dawn and Always have
Hi Dawn and Always have hope,
I don't know how I missed this post, but I read both of your emails, I was really happy to get them it made my day so thank you very much. I think we have the longest thread here, I am so glad that we have our little group here. I'll be sending those pics hopefully soon.
Thanks again and have a great day and weekend.
Maryann
Hi Maryann and Carrie (Always have hope),
How are both of you this week? Carrie how is your mom doing? I had a great weekend but it was nice to get the kids back to school this morning. I am going to have to develop some sort of schedule for them over the summer or I will lose my mind.
My fil is still struggling with the mouth sores, but other than that he is doing pretty well so far.
Have a good week ladies. Maryann I can't wait to see your pics.
Dawn0 -
Hi Ladies,bangormom said:Hi Dawn and Always have
Hi Dawn and Always have hope,
I don't know how I missed this post, but I read both of your emails, I was really happy to get them it made my day so thank you very much. I think we have the longest thread here, I am so glad that we have our little group here. I'll be sending those pics hopefully soon.
Thanks again and have a great day and weekend.
Maryann
I had my port put
Hi Ladies,
I had my port put in on tuesday, and boy do I have pain! The cough that I have from the Afinitor makes the pain so much worse, I haven't gotten a real good sleep in 2 days now and it is making me cranky, I don't like that. We have had icky weather up here, and I am still trying to get my daughter to make some time for those pic's I want to send, she'll get to it. Her cheer tryouts will be held the last week of school and they don't even have a coach, what a year for cheer this will be.
Oh, before I forget, on tuesday 2hrs after I was discharged I had a dr's appointment I gained 3lbs! For me thats great news, he says he thinks I am doing pretty good, but no treatment for this cough that is driving me over the bend. All the doctors keep telling me that I have try all the over the counter stuff first, well that can get expensive, but it is what I am going to have to do I guess, one day I'll find something that works.
Dawn, has your father in law tried Biotene mouthwash and toothpaste for the mouth sore's, it has worked for me, if he has and it doesn't work there is a perscription the doctor can writte for something called mirical mouthwash, I haven't used it, but others have and they say it works. You might even be able to find a home made version on line. Well I have to go and get some ice for my shoulder, hopefuly I can get those pic's out this week.
Maryann0 -
How are you?bangormom said:Hi Ladies,
I had my port put
Hi Ladies,
I had my port put in on tuesday, and boy do I have pain! The cough that I have from the Afinitor makes the pain so much worse, I haven't gotten a real good sleep in 2 days now and it is making me cranky, I don't like that. We have had icky weather up here, and I am still trying to get my daughter to make some time for those pic's I want to send, she'll get to it. Her cheer tryouts will be held the last week of school and they don't even have a coach, what a year for cheer this will be.
Oh, before I forget, on tuesday 2hrs after I was discharged I had a dr's appointment I gained 3lbs! For me thats great news, he says he thinks I am doing pretty good, but no treatment for this cough that is driving me over the bend. All the doctors keep telling me that I have try all the over the counter stuff first, well that can get expensive, but it is what I am going to have to do I guess, one day I'll find something that works.
Dawn, has your father in law tried Biotene mouthwash and toothpaste for the mouth sore's, it has worked for me, if he has and it doesn't work there is a perscription the doctor can writte for something called mirical mouthwash, I haven't used it, but others have and they say it works. You might even be able to find a home made version on line. Well I have to go and get some ice for my shoulder, hopefuly I can get those pic's out this week.
Maryann
Hey Maryann,
How are you doing? Is the pain any better? Maybe you should see a special lung doctor and try to get this cough resolved. Anyway, I hope you are feeling better by now. I laughed and laughed at your delight in gaining 3 pounds. I wish that it was difficult for me to gain weight. Unfortunately, I could gain 3 pounds in about an hour if I wanted to.
My fil is now off the clinical trial he was in. It was a combo trial of Sutent (sp) and some other experimental drug that starts with an A. I can't keep all the names of his drugs straight, especially since sometimes they use brand names, sometimes generic. Anyhoo, the experimental drug is causing a dangerous clotting disorder in about 30% of the patients so the FDA stopped the study. The good news is that my fil was not one of the patients that suffered from this clotting disorder. The bad news is that now he is taking Sutent only and that is not experimental so it may prove to be very expensive for him if his insurance does not cover it. I don't know if it will work for him anyway. He has his next scans scheduled for July 10. Also, Maryann thanks for the information about the medication for the mouth sores. I will pass this on to my fil and hopefully he can feel better.
Alwayshavehope how is your mom doing? How is your garden doing? I hope this message finds you well. Feel free to email me directly if you need anything (you too Maryann).
Take care ladies. I have to get my daughter to gymnastics and my son to baseball practice.
Dawn0 -
Hi Dawn and Maryann....dawnmomofthree said:How are you?
Hey Maryann,
How are you doing? Is the pain any better? Maybe you should see a special lung doctor and try to get this cough resolved. Anyway, I hope you are feeling better by now. I laughed and laughed at your delight in gaining 3 pounds. I wish that it was difficult for me to gain weight. Unfortunately, I could gain 3 pounds in about an hour if I wanted to.
My fil is now off the clinical trial he was in. It was a combo trial of Sutent (sp) and some other experimental drug that starts with an A. I can't keep all the names of his drugs straight, especially since sometimes they use brand names, sometimes generic. Anyhoo, the experimental drug is causing a dangerous clotting disorder in about 30% of the patients so the FDA stopped the study. The good news is that my fil was not one of the patients that suffered from this clotting disorder. The bad news is that now he is taking Sutent only and that is not experimental so it may prove to be very expensive for him if his insurance does not cover it. I don't know if it will work for him anyway. He has his next scans scheduled for July 10. Also, Maryann thanks for the information about the medication for the mouth sores. I will pass this on to my fil and hopefully he can feel better.
Alwayshavehope how is your mom doing? How is your garden doing? I hope this message finds you well. Feel free to email me directly if you need anything (you too Maryann).
Take care ladies. I have to get my daughter to gymnastics and my son to baseball practice.
Dawn
Hi Dawn and Maryann:
How are you two doing? Finally got some time to get on here and take a look at the postings. Was home sick yesterday and again today. Got some sort of cold/flu thing going on. Feel better today than yesterday, at least. Went to the doctor and he prescribed something for me to take for my remaining sore throat and sinus headache. Think I caught it up at the hospital on Sunday.
Anyways, how are you doing Maryann? I hope that your pain from the port has gone away now. Hope it will be benefical to you. That cough must really be bothersome, too. You've been experiencing one for a long time now, haven't you. I was so glad to hear you'd gained weight. That's something to be happy about, right now, isn't it. I tell you, I really enjoyed being able to email you and Dawn. It allows me to talk about other things and allows me to send pics to you'll if I want to.
Dawn, how are you doing? Sorry to hear that your FIL won't be doing the clinical trial anymore, but sounds like someone was on top of their game when they realized that it causes blood clotting. Believe me, that's a serious thing when you start talking about blood clots. Scares you a lot. Sorry he's experiencing the mouth sores. I'd never heard of that mouthwash that Maryann suggested before. Sounds like a good idea to try. I'll have to remember it if mom gets her mouth sores again.
Well, as for here, mom's been in the hospital since Thursday night and is supposed to be coming home tomorrow. I'm not sure how to feel right now, to be honest. Mom's been miserable the past week or so, throwing up and etc... Dad had mom escorted in an ambulance to the hospital Thursday night and she was admitted. Apparently, mom's kidney function was so low (not doing good), her potasium levels were dangerously high, and she was dehydrated (other than the fact she had a hard time breathing). Friday, they were going to give her a drug to lower her potasium levels and if it didn't work they'd have to do surgery to open her kidney up, etc. So, I took Friday off and sat up at the hosptial with mom. She was so miserable that day. The drug they gave her, (to put it in a kind way...)basically made her use the bathroom all day; that's the only way you can get the potasium levels to lower, apparently. But it worked, so thankfully she didn't have to have any surgery (I don't think her body would've been able to take that anyways). Then on Saturday, she was much better, some of her color came back, her potasium levels returned to normal, her kidney function was better and weird enough, her tongue sores went away. She's been taking fluids all weekend due to the dehydration. I guess not eating anything will contribute to that. It also appears that she's been taking too much Levenox (blood thinner). The Levenox has been making her blood too thin and causing blood to pool up in small places underneath the skin on her arms and then those places end up opening up and bleeding. So somethings going to have to change with that. They're also giving her meds to help with digesting (keeping food down) and steroids for weight gain. Mom also went ahead and made the decision to have hospice care. So they will be coming once or twice a week now to the house checking on her. Also, a man just delivered a hospital bed to the house a second ago and set it up in the living room downstairs. Mom said she just couldn't go back to the way things were....having to wake people up at night for basic needs and laying in her bedroom all day with no one there and having nothing but four walls to look at. She says, at least now she'll be able to be downstairs and can look out the windows into the front yard and so on.... It's so sad to see it come to this, though.
Well, to talk about something a little more cheerful-my garden you asked? My garden is doing great. In fact, I'm going to try to go outside and water them today. I planted carrot seeds a week ago and haven't seen anything come up yet. The ground is so dry and it's like in the 80s right now. I planted wave petunias several weeks ago in the garden and small plants have come up in that exact area, but I haven't quite determined yet as to whether or not they're actually wave petunias or if they're clematis seedlings from the clematis vines that are planted near by. So I'm waiting for them to grow, so I can determine. Friday, my sister and I are going to the bridal store; provided I feel better by then. She had alterations done to her wedding dress that she'll get to inspect and I finally found a bridesmaid dress, but it needs a tailor's touch.
Well ladies, I hope to talk with you soon. Look out for an email soon, as well. I'm going to try to send more pics, if you'll two like. I'm hoping to see some of those pics you mentioned Maryann. Don't worry, I know your daughter will get around to it soon. Well, talk to you'll later. Have a great rest of the week, okay.0 -
Hi Everyone, Sorry for notbangormom said:Hi Ladies,
I had my port put
Hi Ladies,
I had my port put in on tuesday, and boy do I have pain! The cough that I have from the Afinitor makes the pain so much worse, I haven't gotten a real good sleep in 2 days now and it is making me cranky, I don't like that. We have had icky weather up here, and I am still trying to get my daughter to make some time for those pic's I want to send, she'll get to it. Her cheer tryouts will be held the last week of school and they don't even have a coach, what a year for cheer this will be.
Oh, before I forget, on tuesday 2hrs after I was discharged I had a dr's appointment I gained 3lbs! For me thats great news, he says he thinks I am doing pretty good, but no treatment for this cough that is driving me over the bend. All the doctors keep telling me that I have try all the over the counter stuff first, well that can get expensive, but it is what I am going to have to do I guess, one day I'll find something that works.
Dawn, has your father in law tried Biotene mouthwash and toothpaste for the mouth sore's, it has worked for me, if he has and it doesn't work there is a perscription the doctor can writte for something called mirical mouthwash, I haven't used it, but others have and they say it works. You might even be able to find a home made version on line. Well I have to go and get some ice for my shoulder, hopefuly I can get those pic's out this week.
Maryann
Hi Everyone,
Sorry for not answering sooner, but this is my 3rd day in the hospital, It seems I was the proud winner of an all expense paid trip to st.lukes in bethelhem pa. I have a lymphnode blocking my left lower lung from getting any fluids that it developes out, so now I have pneumonia,I know that is spelled wrong sorry. Hence all of my coughing I been doing for a month. I hate it when you tell a doctor something and they treat it as tho you have no clue what is going on, I have been telling him for so long about this cough I don't even remember how long and now I am stuck in the hospital. I can't stand hospitals, tho this one in nicer then temple university in phillie. I might get to go home today at noon, God I am praying so hard for that.
Always have hope, I am so sorry that your mom had such a rough week, sounds like she is/was worse then me. Hospice, it doesn't always mean a death sentence, and being in the living room will be better for her in so many ways, she'll be a part of everyday life, wich is so much better then being stuck in a room away from people, I know I spend way to many days alone, you get to the point that your want to give up. I pray that she does better and feels better everyday. I am keeping her in my thoughts and prayers as well as you and your dad. Let me know if there is anything I can do for you or your mom.
Dawn, I'm sorry also that your fil had to stop the trial, but like always have hope said, at least they discoverd it before he was made sicker then need be, and sometimes things work in ways that we don't understand and that is usualy for our best. I forgot what you said if anything he is going to try next, please forgive me for that, I am sorry, the biotene mouth wash and toothpaste you can find at cvs, walmart, riteaid, just about anywhere, I do hope his mouth sores aren't too bad. When I get home I am going to reread both your post and always have hopes post. I keep feeling as tho I missed something important, I don't like that feeling and I don't want to lose my two freinds here buy saying some thing wrong because I miss read or missed a line. I seem to be 'foggy'.
Well, I am going to sit here and wait to be discharged, doc says not before noon, I say asap!
I am praying for the both of you's.
Maryann
Maryann0 -
Hello to all threebangormom said:Hi Everyone, Sorry for not
Hi Everyone,
Sorry for not answering sooner, but this is my 3rd day in the hospital, It seems I was the proud winner of an all expense paid trip to st.lukes in bethelhem pa. I have a lymphnode blocking my left lower lung from getting any fluids that it developes out, so now I have pneumonia,I know that is spelled wrong sorry. Hence all of my coughing I been doing for a month. I hate it when you tell a doctor something and they treat it as tho you have no clue what is going on, I have been telling him for so long about this cough I don't even remember how long and now I am stuck in the hospital. I can't stand hospitals, tho this one in nicer then temple university in phillie. I might get to go home today at noon, God I am praying so hard for that.
Always have hope, I am so sorry that your mom had such a rough week, sounds like she is/was worse then me. Hospice, it doesn't always mean a death sentence, and being in the living room will be better for her in so many ways, she'll be a part of everyday life, wich is so much better then being stuck in a room away from people, I know I spend way to many days alone, you get to the point that your want to give up. I pray that she does better and feels better everyday. I am keeping her in my thoughts and prayers as well as you and your dad. Let me know if there is anything I can do for you or your mom.
Dawn, I'm sorry also that your fil had to stop the trial, but like always have hope said, at least they discoverd it before he was made sicker then need be, and sometimes things work in ways that we don't understand and that is usualy for our best. I forgot what you said if anything he is going to try next, please forgive me for that, I am sorry, the biotene mouth wash and toothpaste you can find at cvs, walmart, riteaid, just about anywhere, I do hope his mouth sores aren't too bad. When I get home I am going to reread both your post and always have hopes post. I keep feeling as tho I missed something important, I don't like that feeling and I don't want to lose my two freinds here buy saying some thing wrong because I miss read or missed a line. I seem to be 'foggy'.
Well, I am going to sit here and wait to be discharged, doc says not before noon, I say asap!
I am praying for the both of you's.
Maryann
Maryann
I just took the time to start at the beginning and read your stories/posts. What a series of journeys you are going thru and my regrets and regards to all. My posts are under donna_lee and right now I've had a "good news" result from my most recent CT.
But I wanted to find out about Afinitor, since my brother (a professor of Veterinary Radiology) had sent an article after the FDA approved it. Maryann, it seems to be effective for you at this time. I'm so sorry you had to go thru the other meds with such bad results. And Maryann, Happy Birthday in March. Let's be around for 2010!!!
Carrie -I'm glad you have Hospice involved. I took Hospice Volunteer training 2 years ago and really feel they have a lot to offer. The one I work with is not-for-profit and they have counseling available for family members, too. A little over a year ago, they started a Palliative Care service. That was what I was offered by the Dr.'s at my Dx.
Dawn-How hard to be in the "sandwich" of kids of your own and dealing with fil.
My kids are 43 with 9 & 13 year olds; and 38 with 2 & 4 year olds and I've been dealing with my cancer since this time 3 years ago. I try to put myself in their position, especially this past winter when my internist changed my anti-depressant and the new one made me really depressed and gain 20 lbs. I've been back on Paxil since 2/10-memorable day in my life- and the depression has lifted and I've lost the 20#.
Summer plans, besides pulling weeds in my gardens, include serving on Federal District Court Jury Duty out of Eugene, OR (I'm in Oregon); and taking the 13 year old on a "road trip". When we talked about it the other night, he couldn't come up with anything specific he wanted to do or see, so I said, "Maybe we should just put a map on the wall and throw a dart." The 9 year old said, "What if you hit Maine?" He knows his geography, but think I'll come up with a couple of fun itineraries to choose from that are a little closer to home.
My best to "The Three Musketeers."
Donna0 -
Hi, nice to meet you....donna_lee said:Hello to all three
I just took the time to start at the beginning and read your stories/posts. What a series of journeys you are going thru and my regrets and regards to all. My posts are under donna_lee and right now I've had a "good news" result from my most recent CT.
But I wanted to find out about Afinitor, since my brother (a professor of Veterinary Radiology) had sent an article after the FDA approved it. Maryann, it seems to be effective for you at this time. I'm so sorry you had to go thru the other meds with such bad results. And Maryann, Happy Birthday in March. Let's be around for 2010!!!
Carrie -I'm glad you have Hospice involved. I took Hospice Volunteer training 2 years ago and really feel they have a lot to offer. The one I work with is not-for-profit and they have counseling available for family members, too. A little over a year ago, they started a Palliative Care service. That was what I was offered by the Dr.'s at my Dx.
Dawn-How hard to be in the "sandwich" of kids of your own and dealing with fil.
My kids are 43 with 9 & 13 year olds; and 38 with 2 & 4 year olds and I've been dealing with my cancer since this time 3 years ago. I try to put myself in their position, especially this past winter when my internist changed my anti-depressant and the new one made me really depressed and gain 20 lbs. I've been back on Paxil since 2/10-memorable day in my life- and the depression has lifted and I've lost the 20#.
Summer plans, besides pulling weeds in my gardens, include serving on Federal District Court Jury Duty out of Eugene, OR (I'm in Oregon); and taking the 13 year old on a "road trip". When we talked about it the other night, he couldn't come up with anything specific he wanted to do or see, so I said, "Maybe we should just put a map on the wall and throw a dart." The 9 year old said, "What if you hit Maine?" He knows his geography, but think I'll come up with a couple of fun itineraries to choose from that are a little closer to home.
My best to "The Three Musketeers."
Donna
Hi Donna,
Welcome aboard, so to speak. You seem to have been dealing with this cancer for a while now. What kind of treatment are you on right now, if any?
I'm sorry, however, that yet another person in this world of ours has to experience this type of cancer (any cancer for that matter). I'm glad to hear you have gotten some type of good news on a recent scan. I bet you were over joyed.
You said you work with hospice? Are they really as helpful as everyone says? Mom just came home from the hosptial today, so I don't know what day they'll start coming by, yet. Not looking forward to any of this. A bit depressing if I think about it all at once.
It sounds like you are going to have fun on that trip you are planning (did you say that's with your grandkids?). It's great that you can get out and do that. Wish my mom and I could go do something like that again. She and I went on a trip with my at the time college art club to New York City four or five years ago. It was the best time of my life. Mom was just talking about it Sunday in the hospital and how she enjoyed it so much. It will always be a part of our memories though, I guess.
So, you like to garden, too. I've got a small vegetable garden (really small) going right now, as well as a flower garden behind the garage in the backyard and in front of the shed.
Well, this post sounds like I'm jumping around a lot with my words/thoughts. Sorry about that. Anyways, it's nice to hear from you and I welcome you to become a regular poster with me, Maryann, and Dawn. Hope to hear from you again.
Oh yeah, I about flipped over the "three musketeers" thing. Never thought about us that way, but I think I like that nickname. It's kind of neat.0 -
Hi, Maryann....Sorry to hear you've been back in the hospitalbangormom said:Hi Everyone, Sorry for not
Hi Everyone,
Sorry for not answering sooner, but this is my 3rd day in the hospital, It seems I was the proud winner of an all expense paid trip to st.lukes in bethelhem pa. I have a lymphnode blocking my left lower lung from getting any fluids that it developes out, so now I have pneumonia,I know that is spelled wrong sorry. Hence all of my coughing I been doing for a month. I hate it when you tell a doctor something and they treat it as tho you have no clue what is going on, I have been telling him for so long about this cough I don't even remember how long and now I am stuck in the hospital. I can't stand hospitals, tho this one in nicer then temple university in phillie. I might get to go home today at noon, God I am praying so hard for that.
Always have hope, I am so sorry that your mom had such a rough week, sounds like she is/was worse then me. Hospice, it doesn't always mean a death sentence, and being in the living room will be better for her in so many ways, she'll be a part of everyday life, wich is so much better then being stuck in a room away from people, I know I spend way to many days alone, you get to the point that your want to give up. I pray that she does better and feels better everyday. I am keeping her in my thoughts and prayers as well as you and your dad. Let me know if there is anything I can do for you or your mom.
Dawn, I'm sorry also that your fil had to stop the trial, but like always have hope said, at least they discoverd it before he was made sicker then need be, and sometimes things work in ways that we don't understand and that is usualy for our best. I forgot what you said if anything he is going to try next, please forgive me for that, I am sorry, the biotene mouth wash and toothpaste you can find at cvs, walmart, riteaid, just about anywhere, I do hope his mouth sores aren't too bad. When I get home I am going to reread both your post and always have hopes post. I keep feeling as tho I missed something important, I don't like that feeling and I don't want to lose my two freinds here buy saying some thing wrong because I miss read or missed a line. I seem to be 'foggy'.
Well, I am going to sit here and wait to be discharged, doc says not before noon, I say asap!
I am praying for the both of you's.
Maryann
Maryann
Well, now wonder you've been coughing. You've been coughing more than a month, though, Maryann, I don't know if you've realized or not. If you look back at some of our older postings, you can see where you've mentioned the cough way over a month ago. I know what you mean about what you said about telling a doctor about something and they somehow don't really seem to be listening. It's kind of like they're ignoring you or ignoring the health problems that are really bothersome to you and then later down the line, it progresses and finally it's like, "oh, we really should have paid more attention to what she was saying".
Anyways, did you get home from the hospital yet. I hope so. I know what you mean by hospitals not being your favorite place. They're good places because they help people get better, but stay more than a day in one and it's like cabin fever. It is nice when the hospital seems nicer inside than others you've previously visited. The one mom was just in, is one of three hospitals that are the closest to us. This one in paticular really needs a renovation, but luckily mom got to stay in the new cancer hospital that they just finished building onto the back on this hospital. It's so much better inside than the rest of the main hospital it's attached to. Well anyways, I'm sorry that you had to be back in the hospital. I hope that you will soon be feeling better and won't have any more complications with that lymphnode or anymore caughing or pneumonia. Otherwise, though, is the Afinitor still doing okay with you? Hope so.
Hope to hear back from you and Dawn soon. Oh yeah, and check out the new poster who just joined in on our posting. Well, talk with you later. Have a good night.
Carrie0 -
Hi Everyone!AlwaysHaveHope said:Hi, Maryann....Sorry to hear you've been back in the hospital
Well, now wonder you've been coughing. You've been coughing more than a month, though, Maryann, I don't know if you've realized or not. If you look back at some of our older postings, you can see where you've mentioned the cough way over a month ago. I know what you mean about what you said about telling a doctor about something and they somehow don't really seem to be listening. It's kind of like they're ignoring you or ignoring the health problems that are really bothersome to you and then later down the line, it progresses and finally it's like, "oh, we really should have paid more attention to what she was saying".
Anyways, did you get home from the hospital yet. I hope so. I know what you mean by hospitals not being your favorite place. They're good places because they help people get better, but stay more than a day in one and it's like cabin fever. It is nice when the hospital seems nicer inside than others you've previously visited. The one mom was just in, is one of three hospitals that are the closest to us. This one in paticular really needs a renovation, but luckily mom got to stay in the new cancer hospital that they just finished building onto the back on this hospital. It's so much better inside than the rest of the main hospital it's attached to. Well anyways, I'm sorry that you had to be back in the hospital. I hope that you will soon be feeling better and won't have any more complications with that lymphnode or anymore caughing or pneumonia. Otherwise, though, is the Afinitor still doing okay with you? Hope so.
Hope to hear back from you and Dawn soon. Oh yeah, and check out the new poster who just joined in on our posting. Well, talk with you later. Have a good night.
Carrie
God is great! I
Hi Everyone!
God is great! I am finaly home. As nice as the hospital and staff were to me, it's like the old saying say's 'there's no place like home!'. Yes, I do remember this cough being around quite awhile, it just got real bad last week the night of my last surgery, and on monday when I went to my regular doctor's appointment I was so upset, I told him: "you have to do something about this cough, I can't sleep eat or anything, and I feel weak and tired all the time." I must have hit a nerve, because the ball really started to roll, I knew I would be going in to get a blood transfusion because the shots I have been getting were not working, so he orderd the transfusion, a blood culture, a dry ct and chest exray. I went straight to the hospital from his office, thank God that my husband was with me, he had to drive me I was so tired that I couldn't drive myself.
There's no sighn of infection, white count is within normal limits, they even checked my urin for infection of the lungs, I never knew they could do that. But they said even tho they can't find it, it is definatly there, the port was a god send, as they used it for IV's and blood draws that really spared me alot of pain.
As far as the Atinitor goes, I have to have scans sent from one hospital to the other, and I think it's going to be a pain in the butt. Thats when I'll find out if it's working or not. I tend to think it's not working I will be disapointed if it isn't. We as in the doctor have to figure a new treatment plan, or if there will be one or not.
Donna, what about Afinitor do you want to know? I'll do my best to answer, it's not bad, it does have side effects tho, like it will mess with blood counts, and tiredness, some slight mouth sores that aren't bad. And coughing, which can become serious my left lung is swollen. Let me know if you need more info, I'll try to help if I can.
Well got to go I have to see about getting those records transferd.
Maryann0 -
Welcome Donnadonna_lee said:Hello to all three
I just took the time to start at the beginning and read your stories/posts. What a series of journeys you are going thru and my regrets and regards to all. My posts are under donna_lee and right now I've had a "good news" result from my most recent CT.
But I wanted to find out about Afinitor, since my brother (a professor of Veterinary Radiology) had sent an article after the FDA approved it. Maryann, it seems to be effective for you at this time. I'm so sorry you had to go thru the other meds with such bad results. And Maryann, Happy Birthday in March. Let's be around for 2010!!!
Carrie -I'm glad you have Hospice involved. I took Hospice Volunteer training 2 years ago and really feel they have a lot to offer. The one I work with is not-for-profit and they have counseling available for family members, too. A little over a year ago, they started a Palliative Care service. That was what I was offered by the Dr.'s at my Dx.
Dawn-How hard to be in the "sandwich" of kids of your own and dealing with fil.
My kids are 43 with 9 & 13 year olds; and 38 with 2 & 4 year olds and I've been dealing with my cancer since this time 3 years ago. I try to put myself in their position, especially this past winter when my internist changed my anti-depressant and the new one made me really depressed and gain 20 lbs. I've been back on Paxil since 2/10-memorable day in my life- and the depression has lifted and I've lost the 20#.
Summer plans, besides pulling weeds in my gardens, include serving on Federal District Court Jury Duty out of Eugene, OR (I'm in Oregon); and taking the 13 year old on a "road trip". When we talked about it the other night, he couldn't come up with anything specific he wanted to do or see, so I said, "Maybe we should just put a map on the wall and throw a dart." The 9 year old said, "What if you hit Maine?" He knows his geography, but think I'll come up with a couple of fun itineraries to choose from that are a little closer to home.
My best to "The Three Musketeers."
Donna
Hi Donna,
Welcome to our thread. As Carrie said, I'm really sorry that you have to be here, but it is encouraging to me to see a 3 year survivor. My fil is only a year and a half into it and when they diagnosed him as a Stage IV this last January, his prognosis was very poor. So far though, he is feeling pretty good. What treatment (if any) are you pursuing right now? Are you going to try the Afinitor like Maryann?
Your road trip sounds great! I wish I could take one this year. My husband and I elected not to take a big family vacation so that we can watch our finances and be there for my fil who is actually 5 hours away in northern Ohio (I'm in Kentucky). All my kids want to do anyway is go to the pool. LOL.
Have a great week.
The "third" musketeer,
Dawn0 -
I'm glad you figured out the coughbangormom said:Hi Everyone!
God is great! I
Hi Everyone!
God is great! I am finaly home. As nice as the hospital and staff were to me, it's like the old saying say's 'there's no place like home!'. Yes, I do remember this cough being around quite awhile, it just got real bad last week the night of my last surgery, and on monday when I went to my regular doctor's appointment I was so upset, I told him: "you have to do something about this cough, I can't sleep eat or anything, and I feel weak and tired all the time." I must have hit a nerve, because the ball really started to roll, I knew I would be going in to get a blood transfusion because the shots I have been getting were not working, so he orderd the transfusion, a blood culture, a dry ct and chest exray. I went straight to the hospital from his office, thank God that my husband was with me, he had to drive me I was so tired that I couldn't drive myself.
There's no sighn of infection, white count is within normal limits, they even checked my urin for infection of the lungs, I never knew they could do that. But they said even tho they can't find it, it is definatly there, the port was a god send, as they used it for IV's and blood draws that really spared me alot of pain.
As far as the Atinitor goes, I have to have scans sent from one hospital to the other, and I think it's going to be a pain in the butt. Thats when I'll find out if it's working or not. I tend to think it's not working I will be disapointed if it isn't. We as in the doctor have to figure a new treatment plan, or if there will be one or not.
Donna, what about Afinitor do you want to know? I'll do my best to answer, it's not bad, it does have side effects tho, like it will mess with blood counts, and tiredness, some slight mouth sores that aren't bad. And coughing, which can become serious my left lung is swollen. Let me know if you need more info, I'll try to help if I can.
Well got to go I have to see about getting those records transferd.
Maryann
Hi Maryann,
I am so sorry that you were hospitalized, but let me tell you I am glad they finally figured out the cough. As Carrie mentioned, you have been complaining about the cough for a long long time, and I knew something wasn't right. It is a shame that patients have to complain so much before things can get resolved! I have often had to call on behalf of my fil 3 or 4 times before I can get questions answered and issues resolved. Persistence is key. The doctors are just too busy I guess.
I pray that the Afinitor is working for you. If not, hopefully you can figure something else out. My fil is still taking the Sudent, but he will have scans in July to see if it is helping or not. Since they removed him from that drug that was causing blood clotting disorders in other patients, his side effects have diminished. It makes sense I guess, since he is only on 1 drug instead of 2. You have had a lot of trouble with most of these drugs. Were you allergic to Sudent? If the Sudent isn't working, I'd like to get him on Torisel or even Afinitor, like you.
Hey Carrie, I am so sorry that your mom is still having such a rough time of it. I wish she wasn't to the point where you guys have to receive hospice services, however, I am glad that she can get the care that she needs. Hopefully you and your dad can take care of yourselves too. This has got to be a nightmare for all of you. Be sure to post when you can and let me know how your mom is doing. In the meantime, I'll send you my prayers.
Take care ladies. I'm going to be out of town most of this week, but I'll try to check back in before I go.
Dawn0 -
Hi Dawn, Carrie,bangormom said:Hi Everyone!
God is great! I
Hi Everyone!
God is great! I am finaly home. As nice as the hospital and staff were to me, it's like the old saying say's 'there's no place like home!'. Yes, I do remember this cough being around quite awhile, it just got real bad last week the night of my last surgery, and on monday when I went to my regular doctor's appointment I was so upset, I told him: "you have to do something about this cough, I can't sleep eat or anything, and I feel weak and tired all the time." I must have hit a nerve, because the ball really started to roll, I knew I would be going in to get a blood transfusion because the shots I have been getting were not working, so he orderd the transfusion, a blood culture, a dry ct and chest exray. I went straight to the hospital from his office, thank God that my husband was with me, he had to drive me I was so tired that I couldn't drive myself.
There's no sighn of infection, white count is within normal limits, they even checked my urin for infection of the lungs, I never knew they could do that. But they said even tho they can't find it, it is definatly there, the port was a god send, as they used it for IV's and blood draws that really spared me alot of pain.
As far as the Atinitor goes, I have to have scans sent from one hospital to the other, and I think it's going to be a pain in the butt. Thats when I'll find out if it's working or not. I tend to think it's not working I will be disapointed if it isn't. We as in the doctor have to figure a new treatment plan, or if there will be one or not.
Donna, what about Afinitor do you want to know? I'll do my best to answer, it's not bad, it does have side effects tho, like it will mess with blood counts, and tiredness, some slight mouth sores that aren't bad. And coughing, which can become serious my left lung is swollen. Let me know if you need more info, I'll try to help if I can.
Well got to go I have to see about getting those records transferd.
Maryann
Hi Dawn, Carrie, Donna,
Well, I had to stop the antibiotics, they were making me so sick, I couldn't keep anything down, and the heart burn was horrible. I'll have to bug my doctor today or whoever is on call and let them know I can't take those antibiotics, I know you need to take the full course but the se's were just to much. I threw up 4x's yesterday and once already today, but I don't feel as bad as yesterday, thank God.
It's my oppinion that the Afinitor is not working as that lymphnode has increased enough to cause problems, I pray I am wrong about this it's like a gut feeling I have (no scientific bases for this) and the way the doctor's were all concerned. My doctor thinks some of what I was hospitalized for was partly a side effect of the afinitor.
No, I wasn't allergic to sutent, it just didn't work for me, however I was allergic to torisel. Sutent has seen alot of success for a rather large number of people, just not for me. It did give me high blood pressure, and took away my taste buds, the only thing I could taste was sweet stuff.
As far as hospice goes I am so sorry that your mom has gotten to that point, I have heard of people going into hospice and they did get some better that they felt they could try more treatments, I pray that's the case for your mom, if it's her decision to not go through anymore I do understand, I felt like that last night you get tired of being sick and tired, it is wearing on one's mind. I have heard so many possitive things about hospice those people are truely amazing.
well it's sunday and the sun is shinning, it looks like a beautiful day! I want to sit outside today and enjoy it if I can. I'll let you all know what we come up with on tuesday when I see my doctor (wether I continue with afinitor, or we go onto something else or no treatment at all) for now I'm gonna make a cup of tea and watch the birds, that seems to be a new intrest I have lol! Well, I'll continue to pray for you all, and please pray for me, your freindship means alot to me, if I don't responed in a timely manner it's because I am sick, so by for now.
Maryann0 -
I am so grief stricken right now, it is hard to think and hard to type these words.bangormom said:Hi Dawn, Carrie,
Hi Dawn, Carrie, Donna,
Well, I had to stop the antibiotics, they were making me so sick, I couldn't keep anything down, and the heart burn was horrible. I'll have to bug my doctor today or whoever is on call and let them know I can't take those antibiotics, I know you need to take the full course but the se's were just to much. I threw up 4x's yesterday and once already today, but I don't feel as bad as yesterday, thank God.
It's my oppinion that the Afinitor is not working as that lymphnode has increased enough to cause problems, I pray I am wrong about this it's like a gut feeling I have (no scientific bases for this) and the way the doctor's were all concerned. My doctor thinks some of what I was hospitalized for was partly a side effect of the afinitor.
No, I wasn't allergic to sutent, it just didn't work for me, however I was allergic to torisel. Sutent has seen alot of success for a rather large number of people, just not for me. It did give me high blood pressure, and took away my taste buds, the only thing I could taste was sweet stuff.
As far as hospice goes I am so sorry that your mom has gotten to that point, I have heard of people going into hospice and they did get some better that they felt they could try more treatments, I pray that's the case for your mom, if it's her decision to not go through anymore I do understand, I felt like that last night you get tired of being sick and tired, it is wearing on one's mind. I have heard so many possitive things about hospice those people are truely amazing.
well it's sunday and the sun is shinning, it looks like a beautiful day! I want to sit outside today and enjoy it if I can. I'll let you all know what we come up with on tuesday when I see my doctor (wether I continue with afinitor, or we go onto something else or no treatment at all) for now I'm gonna make a cup of tea and watch the birds, that seems to be a new intrest I have lol! Well, I'll continue to pray for you all, and please pray for me, your freindship means alot to me, if I don't responed in a timely manner it's because I am sick, so by for now.
Maryann
My mom passed away Friday, June 5 around 2:30 in the morning.
Thursday I was home sick trying to get over my cold. I ended up going in to work for four hours anyway, though. When I got off work and went home, I fixed supper and cleaned up dishes afterward. As I was cleaning up dishes, my sister had come over for a few minutes and ended up coming into the kitchen and asking me how much of the morphine pill my dad had given my mom. I said "none, that I knew of" and asked her why she was asking. She had told me mom wasn't making any sense. My sister left shortly afterward and when I got done with dishes, I went into the living room where mom was.
My mom just wasn't acting right. She started saying to my dad, "lift the bed up", "no I want down", "no that's not right", "put another pillow under my head", "lift me up"....she kept on and on, didn't know what she wanted, couldn't get comfortable. She kept fidgiting with her hands and the bed sheet and her eyes were rolling back and forth.... Then she said to my dad, "I'm scared" and "Jerry, don't leave me" and kept repeating "God, help me", and that's when I knew something wasn't right, I just had this feeling. I layed on the sofa behind her and eventually moved to a chair in front of her where I could sit and watch her and dad sat in the rocking chair beside her, trying to calm her down, holding her hand. A couple of hours later she had somewhat calmed down and dad and I just sat there in the living room with her until 10:00 at night. He went and took a shower, while I sat there with her, and then he came back down and decided to lay there on the sofa all night with her and I went upstairs to sleep.
Dad had waken up on the sofa that morning around 2:00 and went to check on her. She wasn't moving and didn't have a heart beat, and then he had to close her eyes for her. I sit here thinking now, how incredibly hard that must have been for him to have to see that and that image will be stuck in his memory forever.
On Friday, at 4:00 a.m., dad came into my bedroom, told me to turn on a light and sat on the bed beside me. I knew right then what he was about to say. The phone rang before he could speak. He had to give directions to the hospice nurse who would be coming by. Then dad told me and my world had suddenly ended. I cried so hard, we held each other, and dad told me to stay in my room, that he didn't want me to see her like that, to wait until they came and got her. I layed there and listened and heard the sound of the gurney as it took my mom's body away. I'll never forget that sound. Dad came up into my room afterwards and sat with me again and we cried and then he sat there with me as he called my sister's house. "Something" he said "that I never thought I'd have to do, tell my two kids that their mother was gone."
Up until today, Friday was the hardest and longest day of my life. You find out your mom's passed away and before you know it, you're running off to a cemetary and a funeral home the same day, making the arrangements. Picking out a casket was the hardest part of that experience, I cried, I guess because that's the first step that starts to make it all sink in. Even with that said, today is probably going to be the second hardest and sadest day of my life. This evening we're having the "viewing" from 2-5 p.m. and tomorrow is the graveside (funeral) at 10:00 a.m.
I'm about to go sit down now and pick out some pictures that I'd like to put in the casket with mom tonight. Thankfully, mom had written down some of her wishes a few days before she died. So, I know she wants our family photo sitting near her casket and she wants her last photo she had done for us sitting out near her register book tonight. Last Sunday, she was able to tell me, she wanted purple flowers and she wanted to be wearing the dress that she was going to wear to my sister's wedding.
I am so shaky right now, I guess because I want tonight to be over. I want to say my goodbyes, but I'm not looking forward to seeing her laying there.
I am so thankful though, that we have had a lot of people these past two days that have been so nice and supportive. Can't get over the food thing, though.....It's a little overwhelming.
Well, I am sorry to not ask how all of you are doing and I am sorry, I have to be giving you this bad news, but I am so sad and filled with too many thoughts and emotions right now. To all of you, if anyone is interested, my mom's obituary (her name is Carol Ester) can be viewed online through the website for the Richmond Times Dispatch, for Richmond, VA. AND they have a memorium/guest signin book attached to her obituary as well, where visitors can sign their names and any thoughts they'd like to leave.
For now, thanks for everyone's support over the past year as my mom fought so hard. I will post sometime later this week, perhaps. You are all in my prayers. Thanks.0 -
So SorryAlwaysHaveHope said:I am so grief stricken right now, it is hard to think and hard to type these words.
My mom passed away Friday, June 5 around 2:30 in the morning.
Thursday I was home sick trying to get over my cold. I ended up going in to work for four hours anyway, though. When I got off work and went home, I fixed supper and cleaned up dishes afterward. As I was cleaning up dishes, my sister had come over for a few minutes and ended up coming into the kitchen and asking me how much of the morphine pill my dad had given my mom. I said "none, that I knew of" and asked her why she was asking. She had told me mom wasn't making any sense. My sister left shortly afterward and when I got done with dishes, I went into the living room where mom was.
My mom just wasn't acting right. She started saying to my dad, "lift the bed up", "no I want down", "no that's not right", "put another pillow under my head", "lift me up"....she kept on and on, didn't know what she wanted, couldn't get comfortable. She kept fidgiting with her hands and the bed sheet and her eyes were rolling back and forth.... Then she said to my dad, "I'm scared" and "Jerry, don't leave me" and kept repeating "God, help me", and that's when I knew something wasn't right, I just had this feeling. I layed on the sofa behind her and eventually moved to a chair in front of her where I could sit and watch her and dad sat in the rocking chair beside her, trying to calm her down, holding her hand. A couple of hours later she had somewhat calmed down and dad and I just sat there in the living room with her until 10:00 at night. He went and took a shower, while I sat there with her, and then he came back down and decided to lay there on the sofa all night with her and I went upstairs to sleep.
Dad had waken up on the sofa that morning around 2:00 and went to check on her. She wasn't moving and didn't have a heart beat, and then he had to close her eyes for her. I sit here thinking now, how incredibly hard that must have been for him to have to see that and that image will be stuck in his memory forever.
On Friday, at 4:00 a.m., dad came into my bedroom, told me to turn on a light and sat on the bed beside me. I knew right then what he was about to say. The phone rang before he could speak. He had to give directions to the hospice nurse who would be coming by. Then dad told me and my world had suddenly ended. I cried so hard, we held each other, and dad told me to stay in my room, that he didn't want me to see her like that, to wait until they came and got her. I layed there and listened and heard the sound of the gurney as it took my mom's body away. I'll never forget that sound. Dad came up into my room afterwards and sat with me again and we cried and then he sat there with me as he called my sister's house. "Something" he said "that I never thought I'd have to do, tell my two kids that their mother was gone."
Up until today, Friday was the hardest and longest day of my life. You find out your mom's passed away and before you know it, you're running off to a cemetary and a funeral home the same day, making the arrangements. Picking out a casket was the hardest part of that experience, I cried, I guess because that's the first step that starts to make it all sink in. Even with that said, today is probably going to be the second hardest and sadest day of my life. This evening we're having the "viewing" from 2-5 p.m. and tomorrow is the graveside (funeral) at 10:00 a.m.
I'm about to go sit down now and pick out some pictures that I'd like to put in the casket with mom tonight. Thankfully, mom had written down some of her wishes a few days before she died. So, I know she wants our family photo sitting near her casket and she wants her last photo she had done for us sitting out near her register book tonight. Last Sunday, she was able to tell me, she wanted purple flowers and she wanted to be wearing the dress that she was going to wear to my sister's wedding.
I am so shaky right now, I guess because I want tonight to be over. I want to say my goodbyes, but I'm not looking forward to seeing her laying there.
I am so thankful though, that we have had a lot of people these past two days that have been so nice and supportive. Can't get over the food thing, though.....It's a little overwhelming.
Well, I am sorry to not ask how all of you are doing and I am sorry, I have to be giving you this bad news, but I am so sad and filled with too many thoughts and emotions right now. To all of you, if anyone is interested, my mom's obituary (her name is Carol Ester) can be viewed online through the website for the Richmond Times Dispatch, for Richmond, VA. AND they have a memorium/guest signin book attached to her obituary as well, where visitors can sign their names and any thoughts they'd like to leave.
For now, thanks for everyone's support over the past year as my mom fought so hard. I will post sometime later this week, perhaps. You are all in my prayers. Thanks.
Hi Carrie,
I am so sorry to hear about the loss of your mom. I can hardly type this my heart is just breaking for you. I am thinking about you and your family and please know that you are in my prayers right now. I wish that I lived closer so that I could just come over and give you a hug. Please don't feel like you have to respond to this post until you are ready. Take care of yourself and your family. I'm sending you an email too just in case you are not checking posts.
Hugs,
Dawn0 -
Carrie,AlwaysHaveHope said:I am so grief stricken right now, it is hard to think and hard to type these words.
My mom passed away Friday, June 5 around 2:30 in the morning.
Thursday I was home sick trying to get over my cold. I ended up going in to work for four hours anyway, though. When I got off work and went home, I fixed supper and cleaned up dishes afterward. As I was cleaning up dishes, my sister had come over for a few minutes and ended up coming into the kitchen and asking me how much of the morphine pill my dad had given my mom. I said "none, that I knew of" and asked her why she was asking. She had told me mom wasn't making any sense. My sister left shortly afterward and when I got done with dishes, I went into the living room where mom was.
My mom just wasn't acting right. She started saying to my dad, "lift the bed up", "no I want down", "no that's not right", "put another pillow under my head", "lift me up"....she kept on and on, didn't know what she wanted, couldn't get comfortable. She kept fidgiting with her hands and the bed sheet and her eyes were rolling back and forth.... Then she said to my dad, "I'm scared" and "Jerry, don't leave me" and kept repeating "God, help me", and that's when I knew something wasn't right, I just had this feeling. I layed on the sofa behind her and eventually moved to a chair in front of her where I could sit and watch her and dad sat in the rocking chair beside her, trying to calm her down, holding her hand. A couple of hours later she had somewhat calmed down and dad and I just sat there in the living room with her until 10:00 at night. He went and took a shower, while I sat there with her, and then he came back down and decided to lay there on the sofa all night with her and I went upstairs to sleep.
Dad had waken up on the sofa that morning around 2:00 and went to check on her. She wasn't moving and didn't have a heart beat, and then he had to close her eyes for her. I sit here thinking now, how incredibly hard that must have been for him to have to see that and that image will be stuck in his memory forever.
On Friday, at 4:00 a.m., dad came into my bedroom, told me to turn on a light and sat on the bed beside me. I knew right then what he was about to say. The phone rang before he could speak. He had to give directions to the hospice nurse who would be coming by. Then dad told me and my world had suddenly ended. I cried so hard, we held each other, and dad told me to stay in my room, that he didn't want me to see her like that, to wait until they came and got her. I layed there and listened and heard the sound of the gurney as it took my mom's body away. I'll never forget that sound. Dad came up into my room afterwards and sat with me again and we cried and then he sat there with me as he called my sister's house. "Something" he said "that I never thought I'd have to do, tell my two kids that their mother was gone."
Up until today, Friday was the hardest and longest day of my life. You find out your mom's passed away and before you know it, you're running off to a cemetary and a funeral home the same day, making the arrangements. Picking out a casket was the hardest part of that experience, I cried, I guess because that's the first step that starts to make it all sink in. Even with that said, today is probably going to be the second hardest and sadest day of my life. This evening we're having the "viewing" from 2-5 p.m. and tomorrow is the graveside (funeral) at 10:00 a.m.
I'm about to go sit down now and pick out some pictures that I'd like to put in the casket with mom tonight. Thankfully, mom had written down some of her wishes a few days before she died. So, I know she wants our family photo sitting near her casket and she wants her last photo she had done for us sitting out near her register book tonight. Last Sunday, she was able to tell me, she wanted purple flowers and she wanted to be wearing the dress that she was going to wear to my sister's wedding.
I am so shaky right now, I guess because I want tonight to be over. I want to say my goodbyes, but I'm not looking forward to seeing her laying there.
I am so thankful though, that we have had a lot of people these past two days that have been so nice and supportive. Can't get over the food thing, though.....It's a little overwhelming.
Well, I am sorry to not ask how all of you are doing and I am sorry, I have to be giving you this bad news, but I am so sad and filled with too many thoughts and emotions right now. To all of you, if anyone is interested, my mom's obituary (her name is Carol Ester) can be viewed online through the website for the Richmond Times Dispatch, for Richmond, VA. AND they have a memorium/guest signin book attached to her obituary as well, where visitors can sign their names and any thoughts they'd like to leave.
For now, thanks for everyone's support over the past year as my mom fought so hard. I will post sometime later this week, perhaps. You are all in my prayers. Thanks.
I am so sorry to see
Carrie,
I am so sorry to see your post, I am sorry that your mom passed. I to wish I lived closer so I could be there for you and your family, I am praying for you that God will bring you comfort and strength in this time. I know that words don't or can't heal your pain, if you need anything please don't hesitate to ask, know that I am here for you when you are ready to join us again. Please take care of yourself, and know that I care deeply for you.
In prayer,
Maryann0 -
Carrie,bangormom said:Carrie,
I am so sorry to see
Carrie,
I am so sorry to see your post, I am sorry that your mom passed. I to wish I lived closer so I could be there for you and your family, I am praying for you that God will bring you comfort and strength in this time. I know that words don't or can't heal your pain, if you need anything please don't hesitate to ask, know that I am here for you when you are ready to join us again. Please take care of yourself, and know that I care deeply for you.
In prayer,
Maryann
I know this will be
Carrie,
I know this will be a hard day for you as you lay your mom to rest. I am sending you love and strength for both you and your family. Yesterday when I looked at your mom's obituary, I was struck by how much you look like your mom. Cherish your memories with her and remember she lives on in you.
Please email me if there is anything I can do to help you.
Hugs,
Dawn0 -
Love and Regrets to the entire Familydawnmomofthree said:Carrie,
I know this will be
Carrie,
I know this will be a hard day for you as you lay your mom to rest. I am sending you love and strength for both you and your family. Yesterday when I looked at your mom's obituary, I was struck by how much you look like your mom. Cherish your memories with her and remember she lives on in you.
Please email me if there is anything I can do to help you.
Hugs,
Dawn
Dear Carrie,
How sad you must feel. My eyes are watery just thinking about what you must be going thru. If there is anything you can get out of this is that you and your dad got to spend some of the most precious and important time with your mom. You were truly "there" for her. Not everyone in a family is able to or wants to be there at the closing of a life.
Does the Hospice you worked with offer Grief counseling for the survivors? This can be extremely valuable for you, Dad, sister and the rest of the family there.
South Coast Hospice, the one I "champion" offers 13 months. We are across the USA, and each hospice functions under similar rules and regulations, but offer slightly different services. Go to www.schospice.org to see what this one offers; and they just put out their Winter 2009 Newsletter under publications.
Cry when you need to, laugh at the funny stuff and don't let anyone tell you how you should feel. I'm here. dlgould@wildblue.net
Donna0
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