Monday, April 25, 2011

The Dawn of a New Era

First a recap on how she is doing. Then some thoughts.

Nice quiet day yesterday, adjusting to the surroundings. "I love my home" was heard more than once. Got her routine down going from her chair fireside to the bathroom - with support but as the day wore on more and more independently - using new tools for visual scanning (the head swivel) and feeling for objects on the right side ("honey, pretend your right arm is a tentacle"). Ate like a horse. Loved our usual morning routine of matcha tea and oatmeal. Did not care for my surreptitious act of putting a pinch of salt in her oatmeal - won't be doing that again! We provided her sneaky calories throughout the day - she's on water restriction so has to drink high sodium beverages. Hates tomato or V-8 juice. So she is drinking lots of Odwalla and Naked protein drinks and lots of chocolate and regular milk. Her midnight salt tablet intake went fine, at her 6am one, I had her take some crackers along with the salt tablets because they can be hard on your stomach. Sitting in bed, eyes closed, she pops down the pills with water, and as she is munching, murmurs, "I love Ritz crackers", then back to sleep.

Was very happy to be able to take a bath and get properly cleaned, scraped and perfumed. Missed the coif part though. Casey and I have a little clipper work to do and we agreed to do it twice over the next week. Right now she has 3/4s of her head pretty buzzed and the rest medium buzzed. And tufts where they couldn't buzz until the staples we out of her head. So even though I clipped the most egregious tufts off, she looks a little ragtag. But oh so cute  - fortunately she has a really nice head shape. She also has all her jewelry back on and is starting to feel restored.

Today we jump on the medical side and get her scheduled for a sodium check (which involves a blood draw at her oncologist's office - at least twice a week) and try to see him today or tomorrow. She's anxious to see people, and as soon as I know her medical and rehab schedule I'll let everyone know.

It is a challenge for me. While she is the same in so many ways, in others she clearly is not. The dependence on me is the most obvious, and I expect that will decline in time. So many times she just tells me, "tell me what to do". Now, those who know Meagan will know that is not a phrase I've heard very often in the last 23 years. But she is unable to process alternatives, and working to do so can be hard and frustrating, so until her neurons make new connections, she has fallen back to looking to me for direction. That is a big responsibility.

Her attitude is amazing and she is very positive, which makes it better. As she is unable to read without difficulty, and still has motor skill issues, she isn't doing several of her favorite things - such as reading books, sending and reading email, or interacting on Facebook. She doesn't seem disturbed by it, but it is disconcerting to see her just sitting. She says she is fine, enjoys hearing me or Casey talk or putter. Does like to be read to. Doesn't initiate things, but is able to respond. You can't tell at all she had aphasia, but I can tell when she loses a train of thought or has a memory lapse. None of these things bother her, but they are markers for me of how different she really is, and I'll be watching these to see if there is improvement over time. I have found reading the book "My Stroke of Insight" helpful. It is providing me insight and tips to help her recover what she can and to understand the processes going on inside her.

But it definitely isn't a co-equal arrangement anymore and that makes me sad. I've picked up a new responsibility - and I say this without demeaning her in any way - but it's one in which I need to look out for her safety and care (both from a stroke perspective as well as ongoing cancer treatment) the way I would for a child. It's a heavy burden. She lightens it by her attitude and gratitude and laissez faire approach ("it's all good, no stress"). So I know I won't be drawing much criticism for my support - at least for a while.

The great guessing game is - how much will she recover - physically and mentally? What kind of person will she end up being in a stabilized state and what will our new relationship look like? And looming over it all - can we tame the melanoma beast?

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