Recurrence w/Brain Mets 15 years after Bone Marrow Transplant

I would like to talk to someone who has experience with brain metastases - not to depress anyone currently battling brain mets. 

I am caring for my mother who had a breast cancer (estrogen receptor positive - small cell) which was unusual in that it never formed a mass.  The original cancer was diagnosed in 1995 by accident and was a stage IV when it was originally diagnosed.  Mom had radiation and chemo, then a Bone Marrow transplant (autologous) at Vanderbilt U.  I took care of her then - and she was proclaimed clean for many years. After completing 10 years on Tamoxifen ... In 2007 she pressed her Oncologist to biopsy a nodule on her neck - he resisted for almost a year, but she pressed on and it was the same cancer.  After the removal of the nodule at biopsy, her tumor markers dropped to normal again (they had spiked on and off).  Last year she pressed her IM to test her as she had balance problems. Nada. This year she had progressive weakness and they did nothing for her - the doctor told her she was having panic attacks.  A second nodule came up and the doctor told her it was a Lipoma (no way - it now has hard structure and multiple parts to it and is affixed to the surrounding tissues - I found this when I went to get in her Knoxville in June and was shocked).  She called to tell me to come and get her as she was not getting around well and had just drove out and bought a cane (this is a woman who is 70 and has been driving a 5 speed manual sports car).  We saw her, loaded her and her clothes and her meds in the car, and took her home to my home 5 hours away.  Half way there I called ahead and had a hospital bed set up in my dining room (there are no bedrooms downstairs).  The next day she needed a walker. The next day she needed two people and a walker.  I called and got friends and we turned the dining room into a real bedroom for her.   The next day she was bedridden.  I tried many doctors. The ER told me she had Alzheimers and to follow up with her primary care.  It was insane trying to get anyone to see a complicated patient with Medicare.  No doctor would accept her. Took almost 2 weeks. Finally an administrator for a home heath care company called a friend and she was sneaked into a good internist as a new patient and worked in -- we then got to a good oncologist. By this time she could not tell anyone where she was and was very confused.  Confusion, Ataxia, then loss of bladder control.  We had tons of scans and nothing showed -- the MRI looked like possible Normal Pressure Hydrocephalous -- and I was told to come back in 10 days to see surgeon.  10 Days was more than I could imagine.  Had this been a lovely perky 24 year old beauty - they would have admitted her and had the entire medical calvary called out.  I drove her to the ER and refused to leave.  Almost arrested yes ... but what would they do with my mother listing to one side in a wheelchair -- they eventually sent her in for testing and a lumbar puncture and she was admitted that day.  Her lumbar puncture showed that the NPH was caused because of cancer cells in her brain and CSF.  She could not reabsorb the fluid that was created in her brain until the pressure became so great the brain was starting to die.   A shunt could not be placed to drain the fluid as that would spread the cancer to the abdomen.   The damage is done -- the doctor who told her she was having panic attacks probably should have paid more attention -- and I am kicking myself as well for not going to see her earlier -- it is all our faults that this was allowed to go so long.

12 days later we are still in the same hospital room.  I have not left her a day.  However, she forgets I am here constantly.  10 relatives came to see her from out of town -- she cannot remember - the neurologic deficits are bad.   A  port was placed in her lateral ventricle of the brain by the neurosurgeon.  The new oncologist (and I think we have the best) has been great.  He has been doing a chemo with methotrexate directly into her brain and CSF (she had this systemically years ago but I think this is a drug that rarely crossed the blood-brain barrier so it is quite different to have it now inside the brain only).  He assures me this will make her feel better and think more clearly - and I do see that.  The inability to walk and control bladder I do not think will come back -- but she knows me and that I am here.  Sometimes she forgets and is very confused.  She can still tell time, knows her name -- the year is 1997 and the city she has wrong - -and she is placing sugar on her salad and was eating soup with her toothbrush -- but overall -- she is my mom (maybe a bit nicer -- actually much nicer).  I know her prognosis is very poor.  I do not want anything that will cause her suffering.  I want to make sure this chemo is the right thing to do.  She appears to be more clear in her head.  I know we will go home to my house and the hospital bed in my home.  I want to put in a handicapped bathroom we can use for her in her wheelchair so the poor lady can get a shower --I want to do so many things for her -- but have no idea what to do -- I feel like pulling my hair out and screaming into the night.  

Does anyone have advice for me -- any true advice and knowledge about what kinds of functional deficits can be reclaimed if any -- if I should just be continuing pallative care.  My mom seems to want the chemo --- but I do not know if it will really add to her life? Make the quality better?  After speaking with the doctor I made it clear that I understood the prognosis - and that quality was what I wanted for her.

 I know she is afraid.  She asks the doctor -- "Will I get better?" and he has such a good manner -- he says we will have to wait and see what the medicine does.  When she is clear-headed she is so afraid.  I just do not know what to do or expect. I do not know if she will be here with me for another month of another year.  I have no idea what to do for her.  For those of you who have mets, I do not want to worry you -- I hope I do not -- I just want feedback to get advice from patients who have thought about these things, or people on the forum who have witnessed such illness and fear in others -- to advise me in the best way to care for and comfort her.

My mother devoted her entire life to cancer diagnostics and research-- read pap smears -- did fine needles - taught - I grew up in the lab and the morgue with her as I was always a sick kid who she took to work with her -- I find it sad to see other people doing diagnostics on her -- and half-ass diagnostics at times, when I know she worked so hard for so many years to always do it right. 

 My thanks -- 

All of you - thank you.  I am still in the hospital with her. 

Sitting in the hospital room and suprised! The doctor's office and nurse that misdiagnosed her in Tennessee called to check on her ..the one who told her she had panic attacks and the nurse that my mother told me was ignoring her requests and did not schedule ordered tests - the one who told my mother she was not going to deal with her anymore and that she was just an anxious lonley old lady -- (the one who would never get the referrals I called for once I brought her to AL for treatment).  I was told that they "miss her" and were "thinking about her" and that she was "in their prayers."  I wonder if they are praying right now -- I wanted to send a fist through the phone.  I am glad they called -- it would be worse if they were not calling and either sucking up or at least showing some signs of remorse -- but I am still sick inside.

Thank you all for your assistance.  I talked to an elder care attorney and have a free appointment for phone help to plan with her funds and mine (not much) the best way to use it to take care of her so I can pay for home health care.  I have hired a wonderful and loving CNA and a sitter is planned to help -- it was $386 a day ($11K a month) to get the nursing help before at home the last couple of weeks before we came here -- but I had pancreatitis/liver biopsy/gall bladder removal that week she came and could not move her and lift her. She also was trying to get out of bed and falling -- it was hard.  It will be much more affordable now as I can lift -- and I took FMLA to care for her -- now it will be better.  We never had time to spend together when I was a child and she was an alcoholic when I was a child -- she has been dry 20 years -- and it is nice for a change to be able to spend this time with her -- I would not miss it for the world.