AnneBurris Posted December 9, 2003 Share Posted December 9, 2003 Things have changed from bad to worse very quickly for my mom. Her last chemo therapy was at the end of October, she did very well through all of that. She was put on Gleevec 2 weeks ago, its a drug in clinical trial and we've been very hopeful because other LC patients at her Onc office have been stable with it. However, it takes a few weeks to start working well. Unfortunately, my mom's body isn't giving her the time for it to start working. The last real food she ate was Thanksgiving dinner, and even at that point she was vomiting every day. She had a few spoonfulls of Jello every day up until about 4 days ago. The good thing is she's no longer vomiting. She is eating nothing now, and can barely even drink to take her Morphine. We got liquid Morphine today. The Hospice nurse has been coming to check on her. I'm here every day with her and my dad has now taken off work because we think she's in her final days. We also have liquid Adavan (tranquilizer), because although she is so weak and can barely walk, she is very restless and often gets bursts of energy where she has to get up and walk around. She always going to different bedrooms in the house and lying on different beds. Its strange that on the one hand she can have the energy to do that, but barely have the energy to speak or drink water. Just when we think she's so near death she gets up. All of her siblings live out of state, and my sister was finishing up a semester at college and was in the middle of finals, so it was hard to know whether or not we should call people to let them know of the finality of things, because we ourselves don't know when it will be. We asked the Hospice nurse what she thought and she said "it could be a couple of days or a couple of weeks". It's so hard to know whether or not we are making the right decisions here. Someone asked why she wasn't in the hospital or why we didn't have her on a feeding tube. All I could say was that we asked her if she wanted to be in the hospital and she doesn't, I think the same goes for the feeding tube. Are we making the right decisions here? I've never been mad at God or thought that it was unfair that she die or that I lose my mom. But, yesterday was such a long day here waiting to see if she was going to die that I thought for sure God would be merciful and take her peacefully in the night, because it is exhausting going through this. When I woke up this morning and saw that she was still with us, I became very upset with God. I just want a little mercy here for her and all of us watching her go through this. Thanks for listening, please let me know if you think we are making the right decisions. Anne Quote Link to comment Share on other sites More sharing options...
john Posted December 9, 2003 Share Posted December 9, 2003 My family was in the same situation as my mom faced her final days. Ultimately it was my mom's decision to go to hospice. I'll be praying for your family and I am sure everyone here will be praying also Take care Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted December 9, 2003 Share Posted December 9, 2003 Only your Mom and your family can make the decisions you seek and WHATEVER decision it is WILL be the right one. Please don't try to second guess any decision as that will only create heartache. I will keep your Mom and your family in my prayers. Please know that there are people who care deeply even though we have never met "In Person". God Bless you, MO Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted December 9, 2003 Share Posted December 9, 2003 Anne, I am so sorry to hear the news about your mother. Please know that you and your family will be in my prayers. David C Quote Link to comment Share on other sites More sharing options...
Guest canuckwebgrrl Posted December 9, 2003 Share Posted December 9, 2003 Anne, I'm so sorry your family is going through what must be a very difficult time. Like others, I think you would be second-guessing what to do no matter what your decisions are. You love your Mom very much, want to help her any way you can, and that's all that matters. Quote Link to comment Share on other sites More sharing options...
Guest babgb138 Posted December 9, 2003 Share Posted December 9, 2003 Dear Anne, Thank you for responding to my message. I got on this website a few days ago, and I have been reading a lot of your messages to other people and also from other people to you. It is funny how life goes by so quickly, and then suddenly you awake to a very big reality check. Life is so precious. My parents are so wonderful, and I feel so blessed to have such a wonderful life. Why does god have to take him so soon? I feel so selfish. This is really the first tragedy I have had to deal with, besides my grandma dying of cancer in 1987. As you know, it is so hard to cope. I keep praying for a miracle. My mother just called from the hospital. They are doing a more extensive lung scan. My fathers oncologist believes the cancer is back, and wants to start a new chemo..vp-16 and something else. Whatever he had the first time worked great, but not great enough. I hope you get through this Anne. The holiday season will never be the same will it? I am still hoping that my dad pulls through this, but deep down I know that extensive sclc is very hard to beat. Please keep in touch. I will be praying for you. I am putting faith in god. Kathy Quote Link to comment Share on other sites More sharing options...
karen335 Posted December 9, 2003 Share Posted December 9, 2003 Anne, Sorry to hear your mom is not doing well. Is your mom still taking the Gleevac. If she is lets pray that it starts to work for her. Is she drinking anything? You might want to try boost or insure shakes. Have you contacted the doctor? Do they have any recommendations? You are in my thoughts and prayers for you and your mom... God's Blessing to all of us. Karen Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted December 9, 2003 Share Posted December 9, 2003 Anne, I can only echo what others have said. All any of us can do is make the best decisions we can based on the information we have. You care about your Mom and THAT is the important thing. As for being mad at God. I wouldn't worry about that too much. From what little I know about Him, He's big enough to handle it. With my wife almost dieing twice in the last year and a half, and now with me dealing with the hand I've been delt, I've been a little irritated at Him a few times, believe me. But it doesn't seem to matter all that much to Him. He still shows His love and caring for me every day. Here's praying that whatever happens you are provided with the strength, wisdom and serenity to wether the storm. Dean Quote Link to comment Share on other sites More sharing options...
Tracy Posted December 9, 2003 Share Posted December 9, 2003 Both you are your mother are in my prayers, never second guess your decisions...you can only do what you think is best. Quote Link to comment Share on other sites More sharing options...
Ann Posted December 9, 2003 Share Posted December 9, 2003 So sorry that you are dealing with this at this time of the year. Your posting sounded like an echo of what my days were like just about one year ago to the exact date. Yes, I believe you have made the right decision, especially if you discussed it with your Mom previously. There comes a time when we realize that all fights have been fought and all weapons have been used. I know how hard this must be on you and your family. Thank goodness for Hospice and their help and care. Please let me know if you would like to talk. Reading your post seemed like and echo of things I lived through! God bless you and your Mom. You are in my prayers. Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted December 9, 2003 Share Posted December 9, 2003 all your mom has right now is her dignity. if she doesn't want the feeding tube dont do it. Its not worth it. the surgery is not difficult but its not worth putting her through it for what the cancer is doing to her anyway. hold her hand and spend every second with her.. you will be grateful you did. hang on to every second. the end comes too quickly anyway. i understand you wanting her suffering over but think of what that means, your mom would be gone for ever and that sucks. just cherish the minutes that are left. please. Quote Link to comment Share on other sites More sharing options...
Laurie Posted December 9, 2003 Share Posted December 9, 2003 Ann, I'm so sorry.... Your family is in my thoughts and prayers. You are a wonderful daughter and you are doing the best that you can.... I had such a hard time letting go of my Nana that I blame myself for her prolonged suffering ...I'm the one who she worried about leaving...... Sometimes all we can do is Cherish the moments and memories...love with your heart and turn the rest over to God....He will watch over you.... and you and your Mom will always be connected in spirit. I know that she hears me and I feel her warmth surrounding me and carrying me from a place wHere mracles and dreams come true and no one has to endure cancer or chemo... Bless you Ann Laurie Quote Link to comment Share on other sites More sharing options...
AnneBurris Posted December 9, 2003 Author Share Posted December 9, 2003 Karen 335, In response to your question, no we aren't able to get her to take the Gleevec anymore. They are 4 lbig pills to be taken twice a day and she can't even do that, she can barely drink water right now. She's able to take her morphine pills still only because they are very tiny and easy to swallow. She can hardly sit up to drink, and the ensure isn't really an option anymore either. I think though that if her health held out a little bit longer for her that the Gleevec would have added some time. I would encourage everyone who is eligible to inquire about it. Thanks for your response. Anne Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted December 9, 2003 Share Posted December 9, 2003 Karen, I haven't posted much but have read all about your mom. So sorry you have reached this point. My prayers go to you and your family for strength at this time. Quote Link to comment Share on other sites More sharing options...
Ry Posted December 9, 2003 Share Posted December 9, 2003 I am so sorry to hear what your mom is going through. Quote Link to comment Share on other sites More sharing options...
Debbie2003 Posted December 10, 2003 Share Posted December 10, 2003 I'm praying for your Mom. I just wanted to also add that no matter what you're doing, if you are doing it out of love, then it is the right decision. It sounds like you are listening to your Mom's wishes and doing what she wants, which is always the right way to go. But having said that, I also want to add that after my Dad died (not of cancer, but of heart disease) I questioned every single thing we did. He was in a coma so that brings up a lot of decisions the family must make. I would have times that I regreted things and wished we had made different decisions. But after time (it's been 5 years now) I realized that questioning yourself and the decisions the family makes is part of the process of dealing with trauma. It's perfectly normal. You'd question your decisions no matter what they were. It would be more disturbing if you WEREN'T questioning everything. So don't be to hard on yourself and just realize that it's natural. You're a good daughter and you want the best for your Mom and that's wonderful. Take care and remember everyone here is thinking about you and your family. And keep hoping for a change for the better because it can still happen. Quote Link to comment Share on other sites More sharing options...
shirleyb Posted December 10, 2003 Share Posted December 10, 2003 Dear Anne, I am so sorry that you are having to be in the position you and your family are in. Follow your heart. Be with her and let her know how much you care. God is very forgiving. I am sure He has heard each of shout at Him many times. My prayers are with you that you all are able to find peace within yourselves. Much love and warm hugs. Shirley Quote Link to comment Share on other sites More sharing options...
Debaroo Posted December 10, 2003 Share Posted December 10, 2003 Annie, I am so sorry for what you and your mother and your whole family are going through. I agree so much with Katie, make your decisions through love-it will not steer you the wrong way. You know your mother, and noone has any right to judge what you and your family are doing. It is difficult enough to go through all of this-people must understand that what you need right now is support. We are here for you. Deb Quote Link to comment Share on other sites More sharing options...
Rosie Posted December 10, 2003 Share Posted December 10, 2003 Anne, I have no answers, this adventure is just beginning for us. I do, however, want to post my support and prayers for you, your mom and your family. Take reassurance that God knows this is a difficult time. It's so hard, who can understand the heart of God or why He chooses to do what and when He does? Praying for rest, comfort, mercy and peace for you and your family... Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted December 10, 2003 Share Posted December 10, 2003 Anne I am so sorry to hear about your mom and what she is going through. May God give you all strength. Bess B Quote Link to comment Share on other sites More sharing options...
norme Posted December 10, 2003 Share Posted December 10, 2003 Anne, Oh how hard it is for all of you right now. Each day we think it can't get worse but sometimes it does and that is very hard to deal with. I pray very hard for your mom and you tonight. Quote Link to comment Share on other sites More sharing options...
SandyS Posted December 11, 2003 Share Posted December 11, 2003 Anne - God always has reasons for everything he does....try not to be mad at him, or frustrated with your mom - every day means something. Hang in there and know we're all here for you, Hugs and prayers, SandyS Quote Link to comment Share on other sites More sharing options...
Connie B Posted December 11, 2003 Share Posted December 11, 2003 Dear Anne, I too am very sorry to hear that things have taken a bad turn for your mom. I know how difficult this all is for you and your family. My thoughts and prayers are with you all. Sending you lots of TLC. Quote Link to comment Share on other sites More sharing options...
OhioKat Posted December 12, 2003 Share Posted December 12, 2003 I will say a prayer for you & your Mom. You said you spoke with your Mom about the hospital and she said no. Don't beat yourself up, she wouldn't want you to do that. ((hugs)) Quote Link to comment Share on other sites More sharing options...
debbie412 Posted December 12, 2003 Share Posted December 12, 2003 anne, i am so sorry to hear about your mom. i am going through the exact same thing right now. my mom is on hospice and went from good to terrible really quick. it is so hard watching them go through this and many times i had the exact same feelings as you. we dont want to watch them suffer. i have to say that hospice is wonderful and my mom looks forward to them. my mom was really out of it for awhile but since hospice came she is totally coherent but lost complete function of her leggs and only has use of one arm. she walked in the hospital and came out on a bed in diapers. just try to make everyday special. please email me anytime. we can vent to each other. i will pray for your mom. Quote Link to comment Share on other sites More sharing options...
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