Turns out I have lots of little brain tumors. Yup, I'm not a hypochondriac. They are too poorly differentiated to be able to have targeted radiosurgery (gamma knife) done. Today I will have the first of ten sessions of whole brain radiation (wbr). After that I will discontinue my beloved Perjeta and Herceptin for drugs that cross the blood brain barrier - these are Xeloda (an oral chemo) and
Tykerb (an anti-HER2 agent whose molecules are small enough to cross the bbb). I was also put on an aromitase inhibitor to address the hormone positive status of my current cancer, and I will take an anti-Alzheimer drug (off label use) per recent excellent data that shows it mitigates the cognitive effects of wbr. For more of the technical crap see Jon's blog www.joninastoria.blogspot.com.
It was a good year of feeling mostly very healthy with few side effects. Those days are done. Up side - I quit my little part time job which frankly, I didn't enjoy much at all. Shit's getting real as they say. The radiation should buy me time but rather than thinking in terms of say five or even ten years, I think in terms of one or two. It's possible I'll have more and possible I'll have less. We never know what new treatments are coming downt the pike that could help me. There is at least one trial that really interests me but at this point it is only in phase 1b.
Anyway, my strategy is to do lots of yoga, lie around with my family and my dogs, buy some easier crossword books in anticipation of getting even dumber than all the chemo made me. Bucket lists are wierd. I wanted to go to Paris but really the thought of it is exhausting. The things that make me happiest are hanging around with my kids and husband and friends, doing yoga, walking the dogs. Even at my chemo lows I was and will be really content texting back and forth with my daughter when she goes back to school. She is hilarious. We have a planned trip to Belize over Christmas. That will be a happy thing. More of a relaxing vacation than touring the great European cities, for me.
My friends (they are also family) rock. For 10 trips to Portland for radiation the schedule of drivers is filling up. Meals are coming. My birthday was really, really wonderful, especially when I decided I did not need to flit around and be hostessy, but instead planted on the couch with whoever wanted to plant there too and talk and laugh.
So the update is, things are a big giant shit sandwich, but we are supported and loved while we hold our nose and deal with it.