Gaye spoke with her medical oncologist today. He is a gentle and philosophically positive person and is guiding her to use her time wisely - you know, doing things that spark joy- the end time is not predictable. It was good to speak with him. The next phase for Gaye will be what he is calling a "maintenance" dose of chemotherapy. It will be much higher than what she was taking with the radiation (about 2Xs higher) and she will take it for 5 days each month. Her blood will be drawn monthly and MRI's will be taken every two months. As long as they do not see tumor growth this will be the course of action. Her first chemo week will be the week of August 29th.
The issue of clinical trials or experimental drugs was discussed after we brought it up. He mentioned that what Gaye is receiving is the standard of care for now and they have found it has the best results. However, having said that, he did mention that if this standard of care was not working or tumors were reappearing then this would be a good time to look into trials or alternatives. He suggested that trials would be much better near home because they do require many visits - it would be easier to do something within a few hours drive rather than across the country involving flights. We saw the wisdom in this. He mentioned that UCLA had programs that could be looked into if this care was not working for her.
We also brought up the issue of her driving and he gently said that this was not in her immediate future if at all. She would be on the antiseizure drug for many months and if the maintenance chemo proved to keep her stable then she could revisit weaning off of the antiseizure medication. Driving could be left to her favorite Uber driver - have to work on that one....for now that is ME!!! Love that I am her favorite Uber driver. Even if she was were to be naughty and did some driving, if she got into a fender bender or worse and they found out she was on antiseizure medication that things would not go well for her. Neither scenario, fender bender or angry "victims" would not good. Driving is obviously not a comfortable situation.
The family is planning ahead for Christmas in Santa Barbara already and I have to say that we are all excited about this. What a fun place to have the holidays and if Gaye needs some alone time she'll have her cute cottage to retreat to.
By the way, we have become experts at jigsaw puzzles. We have found a great stash at her community's library....we love this system. We can pick out a puzzle, complete it and take it right back so not adding more things to Gaye's place. (The Cat puzzle, which we loved, was actually a gift from Keira, Gaye's granddaughter. Good choice Keira!)
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