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.

15 comments:

  1. :-( Blindsided. Can't imagine what it's like for you know him intimately and love him so. I hate the abilities it's already taken from him, frustrating I'm sure. Thank you for keeping us updated. Strength to him!

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  2. Thinking of you Eric and sending love and courage to the whole family.

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  3. Many thanks 'W' for the update. I appreciate how hard it must be to post this news, and hard again for me ( and others) to read and digest.


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  4. It's tough to go online to check and see nada there. Thanks much "W" for posting, hard as it must be to do. Our thoughts and warmest wishes are with Eric and all. Marianne

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  5. Thanks so much for posting this. I appreciate the update and the advice. Sending love to you as well.

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  6. Thank you so much, W, for the post. After seeing Eric today, it seems like he might be up for some easy (flat, open) walking. And going to hear bands. And company. And chocolate. :) That is, he talked about the things he is still able to do/enjoy, and there seemed to be a good list of things.

    And, amazingly, he was still helping me with my own recent loss. What a great guy.

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  7. W - thank you for the update and so sorry for what is happening to your brother - my prayers are with Eric, you and your family that this part of his journey will still bring joy and laughter as much as possible along the way.

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  8. Thanks so much for writing...i have been checking in to see how Eric is doing. Eric, we wil be in SF in four weeks and trust me: i will bring tons of German and Swiss chocolate!!!! Lots of love Nic

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  9. Thank you for sharing updates with those of us who love that crazy, wonderful, brother of yours. Sending huge hugs, laughs, and thoughts of chocolate to all of you from the East Coast. (and sending a special song from eminem to you, Eric!) amy

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  10. Thanks for the update & for your (and especially Eric's!) courage.

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  11. My heart is with you, Eric, and the rest of your family. Thank you for the update ... I am in Sacramento, but we will try to escape the heat wave next weekend and visit Eric in SF. I know he loves Ft. Funston, so my goal will be to get him out there with my crazy dogs. Love and hugs to you all. Jodi

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  12. Thanks for the update. Always thinking of the strong and courageous Wolverine.
    ...Cam

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  13. Thanks for the update. Have been wondering how he is doing. Prayers for Eric!

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