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Hellos go out to everyone......

I have been following, but have not posted in a while. I feel bad that I always seem to post when things are bad.

Well, some of you will remember that mom went to Germany to see her family this summer......and she has declined exponentially since then. The wheres, whos, whys, don't seem important any more. I have vascillated between anger(very severe and debillitating anger) to the same level of grief since she has come home. Gosh, I ask myself, what could have been done differently?????????? I do honestly believe that it was the trip that ultimately will lead to her death, and the anger I feel towards her sister and brother for not coming here is palpable. In some sense, I do blame them-and I know I sound like a bitter, selfish bit$%$^& for it. I am also very angry at her drs. Can't help it, I just am. I asked for a slew of non-invasive tests to be done at the end of August-she seemed to decline too fast- and no one would do them. Then to find out 10 days ago, that I was right and maybe if they had done these tests 6 weeks ago when I asked them to, we wouldn't be in this situation now. How do you stop feeling so bitter??? The dr. told me my mom has 2 weeks to 2-3 months left. She has been suffering for the last 2weeks, I have realistically let go...but she wants to fight. So, I still fight, torn b/c I have never kept anything from her on this journey, but now I have to-to keep her hope alive. She is not ready.

Tomorrow, they have set up a bronchoscope test to see if there is any obstruction. Only after this test will the dr. tell her if there is any reason to fight.

Sorry for spilling this-I am so torn with so many emotions, and unfortunately they are very conflicting. A sense of calm has come over me-I have seen her suffer too much already, I am ready to let her go, so that she doesnt suffer. She wants to go through testing to see "If my daughter's research is proven right or wrong" she told the dr.. Klls me to know that she is suffering because she thinks I could be right on a long shot.

So-I must end my tirade, even tho' I could go on. Has anyone been in these shoes? How to deal with this? How do I explain it to my young children who grew up with her in there lives 7 days a week?

I wish, that as I do with my kids when they are hurting, I wish that I could hold her until the pain goes away, and that she is okay again. But I can't make this ok anymore..... How does one do this?

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All I can say Hon is that I understand both your pain and anger. I was bitter for so long. My one wish was to make the ones who caused mine and Johnny's suffering to pay. In the long run I realized that bitterness was turning me into someone my Johnny wouldn't even recongnize. Because of that and what it was doing to me I slowly let go of the bitterness but still at times the anger can get the best of me.

My heart is in my throat as I read this. I know that feeling of deperately searching, trying to make people see what you already know. I know what is is like to feel the fear and to want to protect the ones you love from pain. You can't always protect them but you can love them. In the long run no matter what love is what counts and what survives.

I will certainly keep you in my thoughts and prayers as I am sure that so many more here will. I only wish I had the answers you seek but I don't. Hold on don't let it throw you, we are here to hold you up when you need us. (((HUGS)) Lillian

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Kim, I don't have relative experience or wisdom to offer. All I can say is it's better to let yourself feel the feelings. I'm so sorry you and your Mom are going through this, but it will play itself out as it does. It's your Mom's choice now. But you will be the better for it if you find a way (venting here is certainly an option) to let yourself feel the feelings instead of stuffing them. We are here for you.

Judy in Key West

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  • 5 weeks later...


I realize you left this message in Sept and it is now November. I'm not sure how things are with you and your mom, but your story sounds very similar. My mom went through WBR this summer and has declined so fast. We blamed it on her being overmedicated, but after many observations and more tests, the doctor is starting to believe that it is in fact the tumors in her brain putting pressure on a part of her brain that is controlling what she can and can not do. I got copies of her MRI and PET scan yesterday and tried to read the reports myself. I did understand that the MRI basically said there was too much movement to measure the mets in her brain. This is because she is always in pain from the lesions on her back. I mean, I know cancer is everywhere...but I still believe that it's controllable. I'm not in denial...I just feel that we're not there yet. And I feel that my mom wants to fight. She can't talk but her facial expressions light up when I walk in the room. She's in the hospital and for the first few days the doctors would come to ask her questions to see how her brain was functioning...they'd ask her if she knew where she was, what her name was, what the dr.'s name was, etc. She only knew her name and her dr.'s name. She couldn't say my name but she stares at me and smiles at me. She can also say, "I love you too babe.." When I tell her I love her. Amazing how some things just won't be taken by the loss of brain function.

I feel like this is all surreal. We've ordered hospice and they are actually delivering the hospital bed as I type this. My aunt and Grandpa are getting Mom's room ready at Grandpa's house. She's been living there every since her diagnosis, but we've changed her room because of the need for a hospital bed.

I don't know how I pictured things at the end....but I expected her to be with me mentally. I expected to talk to her and go through this together. Now I feel as though she's already gone and we never got the chance to plan for her leaving....

It's sound funny, but we were too busy trying to have fun and forget that she had cancer. Of course, it was always in the back of our minds....but we laughed and joked and took vacations and did what we could to not focus on the future.

My heart is bleeding. My children, two daughters -- aged 7 & 9 are watching me fall apart. And I know they are so sad but don't really know how to deal with their grief. Their "Nona" used to work in their classrooms at school. She was the guest art teacher for the past 2 years at their school. They LOVE her and miss her. They always kiss her bald head (hair is just now starting to grow back after radiation) and tell her they love her. She always responds, " I love you too..." But they know she's confused. They've seen her talk non-sense for the past 45 days and it scares them, I'm sure.

My heart is bleeding for you too Kim. I honestly can't believe people have been through this and survived this kind of pain. It's almost more than I can bare...so I feel what you feel. And I'm so sorry we are going through this....I'm just so sorry.


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