Continue radiation treatment?

Ed an Mimi have met with a social worker and a neurologist who explained to them a range of options open at this time:

1) Get more radiation and chemotherapy. The doctors at Memorial Sloan Kettering (who administered the chemo and radiation) believe that with more rounds of radiation and chemo Barbara’s life can be extended. If the treatment continues, she will reside in a nursing care facility while being treated as an outpatient with radiation. There is an appointment with Dr. Omuro (Barbara’s doctor at Sloan Kettering) on Nov. 3. At this time an MRI will be done. Ed feels that if the MRi reveals that the tumor has stopped growing, that that will be the most compelling evidence for resuming radiation and chemotherapy.

2) If the decision is made to forego radiation and chemo, hospice care is indicated. Options are moving her to an assisted care living unit close to their apartment, or moving her back home (with 24/7 live-in care). The doctor and social worker did not address the issue about the quality of Barbara’s remaining life in either case, and probably they cannot address it.

I have seen her Sunday evening. She looks beautiful as Barbara does, and her eyes and her smile are as expressive as ever. She recognized us all (by accident there were five of us plus nurses, which is way too many) and talking to me she started two different sentences, but did not get past three words of each, so I have no idea what she wanted to say. Frustrating as hell for her. She ate 1/2 cookie and drank about 6 drops of water during an hour or so I was her - she is kept hydrated by IV.

The night shift sitter was a lovely Jamaican woman who calls her Babs, as Barbaras are called in Jamaica.

Other bits I have been told: There are period of confusion and one is not sure whether she really recognizes her friends and comprehends what is being said. The aides, and sometimes even friends talk in front of her about "her" instead of addressing Barbara directly. The therapists sometimes arrive with no prior information about her condition and medical history - one of them assumed she was recovering from a stroke. They attempt to get Barbara to say her name, dates, etc.; these exercises are frustrating and making her more miserable.

Predrag [together with some input from Ed and Mimi]