Eni123 Posted May 13, 2006 Share Posted May 13, 2006 My mother had recently finished 6 mo of chemotherapy for lung cancer. We received results that the cancer had not spread, only stayed about the same. So I've just been spending more time with her this month doing normal things. Her attitude has been very postitive and weve really enjoyed being together. Just earlier this week I went out with my mother as usual and went to a museum, lunch, some shopping. She seemed fine, but something was off. Almost like a distant sadness in her, even though she didn't say anything was wrong. I came home from work yesterday to find that she had been taken to the ER. WHen I had arrived, my father told me the cancer had spread to her brain and she is "out of it". The doctors showed the scan and it has spread everywhere in her brain. When I saw her I almost just fell into millions of peices. She was looking around very rapidly and replying with short answers. She kept trying to get up and the nurses had to force her down. Then she started screaming and crying. No one could hold her down. It was the scariest and most excruciating moment of my life. She has always been a wonderfully loving and upbeat woman, even during the cancer. No signs of any sort of mental illness what so ever. I stayed with her at the hosp last night and they had to keep giving her meds to keep her from getting to aggitated, but at one point she was almost walking into walls and pushing and hitting me. Then the nurses were trying to give her meds and she was kept crying like I've never seen before in my life. Even when her eyes were closed she had tears. It's not even her, I don't undertsand what is happening. She would be 53 next month. She satrted sleeping again w/ the meds and I told her I loved her and she mumbled back "i love you too". It's like she is there somewhere, but completely gone. I don't know if this is normal. I had to leave the hosp b/c I haven;t slept and I'm about to lose my mind. Mother's day is tomorrow..I'm broken Quote Link to comment Share on other sites More sharing options...
ma's kid Posted May 13, 2006 Share Posted May 13, 2006 Praying for you and your family right this second. Close your eyes and feel our support and love. Gentle hugs and try to get some rest, ok. We are here for you, so please lean on us. Libby Quote Link to comment Share on other sites More sharing options...
Maryanne Posted May 13, 2006 Share Posted May 13, 2006 It really broke my heart reading this post. This is so sad and so scarey for you to watch your mom decline like this, especially when you thought she was doing so well. I don't have any answers for you as thank G-d I never experienced that. I just want you to know that I will put you mom in my prayers and pray this is just something they can fix. This is so sad as she was doing so well and quite a fighter. You must be so proud of her. Maybe some people on here could have some advise. I know you will stay with her. We are always here for you. Keep us posted on any changes. Praying for positive ones.... Maryanne Quote Link to comment Share on other sites More sharing options...
Don M Posted May 13, 2006 Share Posted May 13, 2006 I am sorry. How devastating. Perhaps the brain mets can respond to radiation at least to the extent that she could be more like her old self. Don M Quote Link to comment Share on other sites More sharing options...
Don Wood Posted May 13, 2006 Share Posted May 13, 2006 So sorry. So sad. My prayers are with you all. Don Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted May 13, 2006 Share Posted May 13, 2006 It is heart breaking, I understand. This happened to my mom along with a seizure when she was diagnosed with brain mets. That was December of 2004 and my mom is still fighting. Once they get some steroids and treatment started on your mom, things will hopefully turn around. Just a warning, the steroids can make people very angry, so if you see this, do not get alarmed. I am sorry that you guys are experiencing this when you were ready for some smooth sailing. We are here to support you. Hang in there... Quote Link to comment Share on other sites More sharing options...
tatlyn Posted May 13, 2006 Share Posted May 13, 2006 I'm so very, very sorry. God Bless you and your family. Many prayers. Lynda Quote Link to comment Share on other sites More sharing options...
mayos Posted May 13, 2006 Share Posted May 13, 2006 I'm reading this and feeling the pain that must be rocking you right now. Just think how scared she must be. Continue standing beside her...wherever this leads. I'll be going to the cemetary to give my love to my mom tomorrow. Good luck to you and yours Quote Link to comment Share on other sites More sharing options...
Eni123 Posted May 13, 2006 Author Share Posted May 13, 2006 Thank you all so much for your kind words and support. You have no idea what this means to me. I am about to go back to the hosp right now. The Dr. said they may start steroids and brain radiation. I'm not sure what to expect, but I will continue to be by her side no matter what. I am going to have to take a leave of absense from work, because I need to be there right now. I send my love to all of you. We all have this internal instinct to survive- keep pushing forward Quote Link to comment Share on other sites More sharing options...
francesbean Posted May 13, 2006 Share Posted May 13, 2006 Prayers and well wishes for your mom, Eni. Much Love, Frances Quote Link to comment Share on other sites More sharing options...
thrashej Posted May 13, 2006 Share Posted May 13, 2006 Wow, I can't imagine how hard watching your mom like that must be. I am experiencing similar..my father has brain mets with sclc and is dying right now. He is "out of it" but not angry and fighting....yet. I am praying for you and your family!! Quote Link to comment Share on other sites More sharing options...
adela Posted May 14, 2006 Share Posted May 14, 2006 This is so difficult for you. My husband had brain mets and steroids would help him, hope your Mother can get some relief. Adela Quote Link to comment Share on other sites More sharing options...
Littlegirl Posted May 14, 2006 Share Posted May 14, 2006 I am so sorry you are going through this rough time. Praying that the steroids and radiation bring back your old mom again. Karen Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted May 14, 2006 Share Posted May 14, 2006 Oh my dear. I am just beside myself with what is being put in front of you and your Mom. Poor thing. I pray her suffering is over and they have figured out a way to give her comfort. We are all wrapping our arms around you. Cindi o'h Quote Link to comment Share on other sites More sharing options...
ErinC1973 Posted May 14, 2006 Share Posted May 14, 2006 I am so very sorry...what terrible timing, not that any time is a good time for news like this, but on Mother's Day, it's especially hard. My stepdad had NSCLC which spread to his brain in 1999. It was devastating to watch this incredibly intelligent man reduced to childlike behavior in a matter of one day. I honestly couldn't stand looking at him, it was so heartbreaking. Unfortunately, I just lost my mom to NSCLC now, too, and tomorrow is going to be hard for me, too...and I have a brand new baby, so I should be happy... Well, I hope you have a better night at the hospital tonight with your mom, and please, keep us updated on her condition. I really do hope things turn around. Quote Link to comment Share on other sites More sharing options...
hollyanne Posted May 14, 2006 Share Posted May 14, 2006 I am praying si hard for you tonight. This had to be terrifying. I am so hopeful that steroids/radiaion will control the swelling that may be causing the delirium. Praying for a Mother's day gift of getting your mom back. Love to you, Holly Quote Link to comment Share on other sites More sharing options...
karenl Posted May 14, 2006 Share Posted May 14, 2006 I understand, and am so sorry you are going through this. I hope the steroids and WBR can help to reverse things for your Mom. Steroids usually work very quickly to reduce swelling, so if inflammation is responsible for some of the symptoms, then you will likely see some improvement relatively soon. Wishing you and your Mom the best, Karen Quote Link to comment Share on other sites More sharing options...
Eni123 Posted May 14, 2006 Author Share Posted May 14, 2006 AN UPDATE FOR TODAY: I managed to get about 2 hours of sleep from yesterday and I went to meet my father at the hosp this evening. When I got there she was in a very restless sleep and kept getting up and we had to walk her out in the hallway and she kept trying to go in the wrong rooms. She is also speaking in a child like manner and she kept putting her hands up and saying "just stop! this is nuts" and it was very hard to get her back in the room. Then she would calm down for a while and get up 20 mins later. The last fit was the worst. She was trying to open a door and couldn't figure out how to get around it and then she asked if I was going to attack her. I know she didn't mean those words, but I don't think I will ever forget how scared she looked. I don't mean to upset anyone with this information, but I just need to get it out. The nurses are giving her dexamethasone and I think it's finally working. From 7pm to 1am she was sleeping very peacefully. I don't know how I feel about the brain radiation. I'm just not sure what the right decision is. The cancer will end up spreading either way and I'm worried about additional side effects of the radiation. Part of me feels like she is already gone, but her spirit is still near. Grieving is going to be a long process for me. She is the most important person in my life. Erin- Celebrate the joy of your new baby tomorrow. Share the love your mother gave you to your child. For anyone who has a mother battling/or has battled lung cancer, my thoughts and love are with you tomorrow. Quote Link to comment Share on other sites More sharing options...
eppie Posted May 14, 2006 Share Posted May 14, 2006 (((((((Eni)))))) I hate this beast. I hate that it is attacking your mom so fiercely right now. Prayers. I am glad the decadron is helping. WE've been down this road with hubs dad in 1999. It sucked. Much love, Eppie Quote Link to comment Share on other sites More sharing options...
Don M Posted May 14, 2006 Share Posted May 14, 2006 I am glad to see that you mom is getting some rest. One stategy I would think would be to have at least enough radiation to get the brain mets under control. Perhaps your mom might have wbr at first. then, if there are not too many, or not too big, they could be zapped one by one with cyberknife. Go to this website and expain your mom's situation to the radiation oncs who post there. You may be able to get a cd copy of her MRI image and if so, you can post it to the message board and the radiation oncs can view it and give you specific advice to your mom's situation. I posted a copy of my ct scan there a while back. You can also get a copy of the mri report and post it there. You could ask the radiation dept. to send a copy of the report to you email so that it would be in a word format and then copy and paste it directly to the message board. These radiation oncs are among the best in the business and usually respond within 24 hours. http://www.cyberknifesupport.org/forum/default.aspx?c=4 You and your mom have my prayers. Don M Quote Link to comment Share on other sites More sharing options...
Linus Posted May 14, 2006 Share Posted May 14, 2006 Eni, Just wanted you to know that I am going through the same thing with my mom. The drs. have had her on steroids for a while now and that helped. Recently she has become very confused and agitated just like you are describing. Her Dr. prescribed Haldol for her yesterday. Today is the first time she has had a good day in about 2-3 weeks! You may want to ask about that drug. (Just FYI) Quote Link to comment Share on other sites More sharing options...
Eni123 Posted May 15, 2006 Author Share Posted May 15, 2006 Don, thanks for the website. I'm going to see what I can do. Eppie, Linus, thanks for the support! Today my mother was a bit more coherant and not as aggitated. It was still very difficult because she kept saying very strange things. I also wonder if the brain mets are changing her vision. She asked me what was all over my face, and commented on my blue and pink shirt (it was black.grey). She still is restless because all she can really do is sleep all day. Now I'm more worried about my dad. I don't know how he is going to deal with this. he doesn't have many close friends. He has experienced the loss of his mother, father, and sister but he commented that my mother is the most important person to him. Even though I'm there for him I feel like he is alone. This scares me so much. I'm still strangely numb at the moment. Tomorrow the dr's are starting brain radiation and then we will probably take my mother home Wednesday and begin hospice care. I wish this was a bad dream that I could just wake up from. I suppose this is just life and we have to survive someway/somehow. I just hope my father can. Quote Link to comment Share on other sites More sharing options...
hollyanne Posted May 15, 2006 Share Posted May 15, 2006 Praying for you so hard...I just want you to have some peace. I know how scary it is. Your dad will get through it -- none of this will be easy, because it simply isn't. I have chnaged my life completely to be with my dad since my mom died....I so badly want to "fix" everything for him, as you want to for your dad. Just be there for them, that is the best you can do and it DOES matter so much that you are "there." At the end of the day, everyone has to go through this journey for themselves as much as we want to help carry them. It absolutely sucks - that is the only way I can explain it. Keep your eyes open for the blessings that are out there. It is amazing how what makes us happy or what gives us a boost changes after going through this type of hell. Praying that your mom wil get some clarity and that through medicationm/radiation they can even out her mental clarity. My mom went through a strange experience that was actually caused by a reaction to Ativan...praying that your "solution" is as easy. Holly Quote Link to comment Share on other sites More sharing options...
Lovemypresley Posted May 15, 2006 Share Posted May 15, 2006 ((Eni)) I went through the same thing recently with my father, although they had not diagnosed brain mets. He had stage 4 NSSLC and was only diagnosed in March. He had his first and only round of chemo the Fri. before Easter. On 4/17, he was rushed back to the hospital and had to have emergency heart surgery. Afterwards, he was fine..acted normally other than a little confusion here and there. Then that Sat., he was neutropenic. He started acting strange, asking me if I heard the song playing over and over, etc...that Sunday, he was def. a changed person..called my mom asking her if she was at the hospital and that she would not find him, seeing kids who weren't there, seeing numbers on a turned off tv, hitting my mother after becoming agitated, pulled out his IV and catheter and was caught naked in the hallway, etcetcetc...that Monday, I begged his dr. to do a MRI to see if it had spread to his brain..they told me it was Sundown Syndrome...he was 69. SS does not cause crooked eyes and being totally incoherant, which he was that Monday. In just one day, I did not recognize him. I don't think he recognized me. And he stayed that way until he left us...that Thursday, 4/27. Tell me now it was Sundown! Anyway, to me, the mental decline was the hardest for me to deal with. Like you, I felt he was already gone and this man I was seeing was someone else...although I think at times in those last days, he knew a little... but I def. feel for you. I do understand what you are going through.... I hope the radiation helps her. I am sending prayers your way.... Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted May 15, 2006 Share Posted May 15, 2006 I hope that things will improve each day for your family. Prayers... Quote Link to comment Share on other sites More sharing options...
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