1.28.11

AYNSLEY:
I feel like everything throughout this process has been one step forward, two steps back. I have a hard time seeing things in aspects other than absolutes-things are either fabulous or horrendous. We're now settled in to the KG Home and while the staff is amazing and Mom's care is much more personalized, it's undeniable that she's exhausted. Plain and simple. She ate a few bites only of breakfast today, about half a cup of soup and a few bites of veggie pizza for lunch and another half a cup of soup for dinner. She has been drinking milk and a good amount of it-it seems to be the perfect consistency for her swallowing difficulty and she likes it. Plus, it's nutritional calories instead of simply sugar calories like juice and soda. But still, her appetite has been very diminished since we arrived and it's concerning. Though it could be due to the lack of marijuana-we didn't get it until dinnertime tonight, and she hadn't had it since leaving Overlake. She's been saying that she doesn't think it's doing anything, but I pointed out that on it, she could eat an entire bowl of cereal whereas today she only ate a few bites. She conceded that maybe it's working after all.

In addition to the poor appetite, the fatigue really bothers me. She has been sleeping a LOT, maybe twice as much during the day since we left Overlake. We're all pretty sure this is due to the Taxol (systemic chemo), and normal, but it's still very scary for me. She looks like a cancer patient. She's lost about 25 pounds (and I have managed to find at least a few of them-I must be the only person in history to gain weight during her engagement!), her muscles have wasted, her skin is burned from radiation, she's lost her hair, she's aged about 20 years in the past 5 weeks. And when she's energetic, it's easy to overlook all of those things. But when I sit next to her, watching her sleep for hours, it's heartbreaking.

So, I viewed today as a bad day. She was a bit uncomfortable during the day, she slept a lot and she didn't eat much. She did have a good physical and occupational therapy assessment in addition to a great speech therapy assessment. The staff here is undeniably excellent. She walked a bit and sat upright for awhile (longer than planned when she was interrupted in her wheelchair on the elevator for a fire drill), but still, I don't see those positives as much when I'm in the midst of my version of a bad day.

But I have to learn not to see things in such terms. I need to embrace the shades of gray. And so, in yet another miraculous moment, the universe intervened and taught me a lesson. At 10pm, Dad called me with the results of the lumbar puncture: there's no more cancer in Mom's cerebral spinal fluid.

Let me repeat: there is no cancer in Mom's cerebral spinal fluid