12.26.10

AYNSLEY:
Today was a really hard day. I came to the hospital looking forward to a good day-Mom had the day off from radiation and had a list of things she wanted to do: 1) shower and shampoo (it's been almost a week!) 2) email work to let them know what's up and 3) email and call out of town and non-Jewish friends who were celebrating Christmas and don't know the situation. I found some awesome Aveda shampoo and conditioner samples and a luxurious face cream from home and was looking forward to "spa day" and helping her compose her message to friends and colleagues.

When we arrived at the hospital around 10am, she was just starting on breakfast. She had more of an appetite today and was eating strawberries and cream of wheat, and an English muffin with butter and blackberry jam. But she's having trouble swallowing, so after two bites of English muffin, she gave up on that. Her mouth got really dry and she was afraid to eat it. She ate a lot of strawberries (chopped up into little pieces) and some cream of wheat. She also ordered yogurt and had a few bites of that a few hours later.

The trouble swallowing is scary and we're not sure if it's a side effect of radiation (according to our guest oncologist) or due to the tumors surrounding her brain and potentially interfering with the amygdala (according to the hospitalist). When I say guest oncologist, I'm referring to the fact that it's Christmas and lots of the doctors are on vacation. We have an oncologist covering for the weekend who is really nice, but not her original doctor. Tomorrow we have a different guest oncologist. I totally understand that it's the holiday and that people are on vacation, but it is a bit frustrating to not have one doctor to take us through everything. But that's where the hospitalist comes in-she's been here since the beginning and is in charge of coordinating all the care. For example, in addition to the difficulty swallowing, Mom also experienced a pretty dramatic decrease in vision function. (Yesterday she was having double vision that was annoying, and which our fabulous nurse, C, fixed by making a makeshift eye patch with gauze and tape. But today, in addition to the double vision, her total vision was really bad. She can tell who everyone is, but can't focus on details, like which button on the call pad is the big red "summon the nurse" button. She also doesn't have any depth perception.) The hospitalist came by today and noted the decrease in visual function and said that we really needed to see a neurologist, but recommended that we wait until tomorrow instead of speaking with the one on call today.

The hospitalist also drafted a plan of action for tomorrow: consultation with the neurologist and an MRI on the middle and lower part of her spine, to help determine how much radiation they want to give her. The MRI that diagnosed the cancer in her upper spine, neck and head is what is determining her radiation course of treatment for the time being, but they may want to do her whole spine and before they set that up, the doctor wants to see what's going on with the rest of her spine, cancer-wise. The hospitalist also recommended that we speak with the oncologist tomorrow to determine the best time to start the chemotherapy.

Mom was very tired today-she never really got in a good time frame. When she went to the bathroom in the morning, her legs almost buckled as she stood up. I had to stand behind her, grab her around the middle with both hands and basically be her support structure as she held onto her IV pole to get back to the bed. She kept saying that she wanted a shower, but wasn't quite ready for it. By 5pm, my favorite nurse (C) was getting ready to leave and we decided it was now or never. I told C that I wanted to do it, and she helped mom to the shower, sat her on the chair there and let us do our thing. As soon as the warm water started running over her hair, Mom revived a bit. She kept saying how good it felt and really enjoyed herself. We washed up and then I gave her a shampoo. I started rubbing her head and she told me to really dig in. So I gave her a really strong head massage around her whole head, no gentleness, and she loved it. It took us 45 minutes, 12 towels, two washcloths and my soaking jeans, but it was definitely the highlight of the day. She felt much better afterwards, even rating her pain at a 2 after she got back into bed (with the amazing C's help, of course) and not being hooked up to her meds.

Our family rabbi and his wife came by tonight to say a few prayers and chat a little bit. As tired as Mom is, and as much pain as she's in, she is still totally lucid and in control of her treatment. She participates in all of the conversations, with both doctors and visitors. She still has a fierce sense of humor, teasing my dad and Gary, and is always checking up on outside situations.

Yesterday I told her how strong she was being, how much I admired her attitude and determination, how I was so impressed with her ability to keep her humor and be so wonderfully nice to everyone despite feeling awful. "It's easy to the be the patient," she said. "It's so much harder for everyone else."