brainmetsbc.org

Update from Jenny

I am now one year out after WBR (whole brain radiation). It worked well until late January (four months ago), when a routine brain scan showed they were growing again. I found the WBR doable, but it did set me back a bit, although I had a severe seizure and spent some time in ICU in the middle of the WBR. During WBR and after, I was tired. I had major problems with my dexterity, and I felt really foggy. Word confusion was a bit of an issue. I began my own little home therapy - printing a little every day then progressing to cursive writing, doing progressively harder puzzles, reading harder and harder things, etc.

Now, 1 year out, although I have some memory gaps around my hospital stay and don't multi-task as well, my verbal fluency is nearly back to normal, and I am working full time as a pastor and being a wife and a mom to 6 kids, 5 of whom live at home. All in all, I don't feel like I've really lost all that much.

I'm currently on a trial of Tykerb and Xeloda (it's one arm), and my scans are coming back with significant improvement.  The largest met in my brain was measured as 1.7x1.4 cm; it now measures 13 mm in diameter, so there is hope.  I have no headaches, balance issues, am allowed to drive, and have good neurological exams.

My only medication is Keppra, an anti-seizure medicine. Taking it makes it legal for me to drive, and since it has no side effects, I'll take it for as long as they want me to.
I write all this to say that even though I've had WBR and have lots of tiny brain mets, I'm still "me," and it is certainly true that having brain mets is not an automatic death sentence. It's scary - I still worry about whether long term side effects of the WBR will put in an appearance, and about what happens if this chemo stops working, but I try not to let that destroy my peace or my joy.
Grace and peace, Jenny