Lindsey has an appointment with Dr. Taylor today. First on our list of questions is around sleep management. Last week the average nightly sleep was 6 hours (in bed by 11:30, up around 5/5:30am). The last two nights however has been 2.5 hours. In bed by 11/11:30 and up at 1:30am. This sleep pattern is significantly different than pre-tumor for Lindsey who was often times in bed by 10pm, up at 7am, and then would also nap during the day.
Second on our list is tumor management. How do we proceed? If the combination of chemo and anti-seizure meds is causing the difficult personality issues, what is the best course of treatment? Do we go back on the meds that have the most potential to slow tumor growth and make life uncomfortable to miserable for Lindsey and those around her or do you focus more on quality of life?
On a separate topic - Wedding.
In a prior post we mentioned that Lindsey gave Greg the ring back indicating that a wedding would be to much at this time. The wedding has been cancelled.
While it's not something Lindsey talks much about anymore, there are moments when she'll bring the wedding up. The most recent conversation occurred on Sunday when she stated that she wanted to go shopping for Grandmother Jackson's dress for the wedding. Last night as she was visiting with Megan and looking through a wedding book, I mentioned that based on the fact that she gave the rings back, still doesn't have a ring, and that she indicated that the wedding would be to much, we have not been focusing on wedding plans. I indicated that based on the current health issues, that it seemed best to postpone the wedding at this time (intentionally using the word postpone to prevent setting off anger/behavior issues.) She seemed confused, but not upset, like one would expect a person to be during a conversation such as this. I asked her to talk with Greg, which she immediately left him a message and asked him to call back but didn't state why. When he returned the call about 20 minutes later, she couldn't remember what her question was. While Greg knows that a wedding doesn't make sense right now. He too is confused because he is hoping that this is all just a bad dream and that the girl he fell in love with will come back.
It's 3:18am in the morning and I can hear Lindsey in her room cleaning out her closet..... I'm choosing not to open her door because unlike Lindsey, I do need to get some sleep. If I see what she is up to, I know I'll have this urge to pick-up and clean-up.
When people ask if I/Lindsey had a good or normal day, I'm not sure how to respond. Our definition of normal/good seems to change daily. I find myself evaluating days like I do projects at work... red, yellow or green. Yet overtime, how one defines a good day changes.
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