Friday, November 20, 2009


Mom seems to be at a remove from the world today, which continues the downward trend we've observed since her massive sleep attack two Tuesdays ago. She used to be good about at least nodding yes in response to yes/no questions, but today it seems especially difficult to get any sort of response out of her. Asking her a question is enough to get her to look my way, but not enough to elicit further reaction.

Getting her to eat is becoming difficult, too, and this problem is only a day or two old. Mom stared at her Korean lunch after I'd placed it in front of her, and instead of automatically taking up her utensils and eating, she merely stared at the food. So I came around the bar and physically helped her to eat the first few mouthfuls of food, after which she began to eat under her own steam.

This was disconcerting and disheartening, and help isn't forthcoming. The only communication we've had from Mom's neurologist has been through the mail: his office sent us some paperwork to help us arrange for a speech pathologist to work with Mom. Actually talking to the neurologist has been impossible for two weeks. NCI, meanwhile, had told us to inform them of any changes in Mom during this eight-week carboplatin period, but when we tried to inform them of how Mom seems to have changed since two Tuesdays ago, they referred us back to Dr. Meister, Mom's medical oncologist. He, in turn, has proved to be extremely difficult to get hold of. My father has talked with him, but only after many repeated tries.

The above frustrations are what led me to take Mom to the ER last week. The ER did its scans, saw an edema, and reassured us that there was no evidence of stroke. While that was good news, there was little else positive that arose from the ER trip: no one there was willing to make a firm pronouncement about Mom's current mental and physical status, i.e., to say whether the carboplatin was playing a role in Mom's unreactiveness, or whether a problem like tumor growth had caused a worsening of the edema in Mom's head.

So-- frustration all around as my mom fades away. Those most in a position to do something seem too busy to care.

Mom has an appointment with her primary care physician, Dr. Royfe, on Monday. Here's hoping that he can enlighten us a bit as to what we're seeing and what can be done.


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