Wednesday, April 10, 2013

Wish I had good news to share...

"W" here, Eric's sister.  Eric is finding it harder and harder to write, so I offered to post the occasional update.

Eric's been experiencing numbness in his right arm and leg, and has also lost more peripheral vision in his right eye.  For a while we had hope that perhaps these were aftereffects from his car accident a couple of weeks ago, but yesterday he saw his doctor, who confirmed that these symptoms are being caused by the tumor.  Eric's also having trouble with word recall, and he says that being in conversation with large groups of people is getting increasingly difficult -- he finds it hard to follow the thread.

It's hard to see my bright, sharp, quick younger brother struggle to express himself and understand what's going on in conversation.  His language abilities seem to come and go:  one on one he can be almost perfectly fine, fluent and clear, but when he's tired or stressed or there is too much sensory input he seems to get easily confused and unable to grab the words he needs.  He expressed to me on the phone today how difficult it is for him to experience this shrinking of his abilities; so much of his joy in life comes from being with his friends and family, and it's becoming harder and harder for him to participate in conversations and enjoy that company.  Much of what he loves to do physically is also looking out of reach -- the numbness in his arm and leg keeps him from being able to rock climb or kayak, and the loss of vision makes biking and even hiking a challenge.

He'll be having another MRI next week, I think, and he doesn't think they'll continue him on the CCNU, given the symptoms he's experiencing.  But we'll see.  A clinical trial is out of the question at this point for him; he's always been clear that quality of life is his most important priority, and he isn't willing to spend what time he has left suffering the side effects of a treatment under test.

Eric has bravely, admirably reconciled himself to the fact that he is in the end stages of this battle.  I don't know how he became so strong and courageous; he's far stronger than the rest of us, who are still wrapping our minds around the reality of the fact that this terrible disease is going to take him from us.

If you are one of his friends in SF, I urge you to find a time to stop by and visit him.  Best not to try to see him in large groups.

These posts are going to be hard to write.  I'll try to keep you updated.