Thursday, July 28, 2011

Pillow Talk - it ain't what it used to be...

We've kind of developed a pattern. Usually I get up pretty early in the morning - between 4:30 and 5:00a.m. I have coffee, take care of the dogs, read the news and then do a lot of thinking and some writing. Meagan is up anywhere between 6:00 and 7:30a.m. After she gets settled we usually talk - mostly about her disease and a lot about how its going, what is upcoming, the boys, then about her appointments she's scheduled (that's when I typically find out about where I need to take her - sometimes with more advance warning than others), and what she needs to do that day in terms of timing to get ready and who is coming and what boy's schedule is and what I am doing. Usually not many tears, unless we get into some rough territory. But the medications she had the night before have worn off and she is typically in pretty good form, feeling reasonably sharp and capable of handling the situation. When she finishes breakfast and takes her medications - around 9:00a.m., she starts noticing the mental sharpness change right away. The mood changes don't kick in until later.

She has noticed feeling more loopy around 3:00p.m. We went for a walk around then yesterday and she could really feel it - it could be the Temodar side effect or it could be fatigue - she took a nap after we got home and during the evening said she didn't feel quite as loopy. So we will play around a bit with naps and see if that helps. She does not like at all that feeling and is quite concerned about her mind - her self image is built around being a sharp, intelligent and quick witted human being.

Which brings us to pillow talk - that time of the day when couples usually connect and bond. We used to do that. Now, mostly, it is about tears and fears. Last night was a good example. It started off with lots of tears around the fear of losing her mind - and I'm not talking about just the effects of the medication or the after effects of the surgery and radiation to-date. That's bad enough - she has a very difficult time reading, which for an avid reader like her is quite distressing. She is also quite aware of how much time it is taking her to do things - as simple as making some decaf coffee in our french press - she spun for 20 minutes trying to figure it out and couldn't remember how much coffee to put in or how it all worked. But it's also about the very real fear and probability of losing more brain function in the future either due to having to zap a new tumor(s) and the surrounding margin area, or of having so many new brain tumors that they can't be zapped and having the impingement on the healthy grey matter affect her cognitive capability even more. That alone is enough to cause anyone to be upset. But especially to her.

That of course leads to talk about how much time is left, the quality of that time, how the boys and I will cope, her anguish that she is causing us and other loved ones so much heartache because of her disease (classic Meagan...worrying about others), and worried about her legacy and how her precious things will be handled. Pretty heavy stuff for pillow time, with lots of tears. I comfort and reassure or provide explanations as best I can, hold her close, and eventually it sort of ends from sheer emotional exhaustion. Sleep eventually comes - but it's not as if that kind of talk generates sweet dreams. And it certainly doesn't generate the kind of intimacy and connectedness that pillow talk is supposed to. It serves a different function now - one that is likely very helpful to her. But not so much for me. Such is the reality of dealing with a terminal cancer.

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