Update

If you were to see Eric sitting in a room, or walking down the street, you’d have no idea he has a fatal disease.  At first glance, he seems like the healthy, hale Eric we’ve all always known.  That’s what is making this current phase of the disease so frustrating and baffling.  He doesn’t look like someone who is battling malignant cancer by any stretch of the imagination. But when you spend time with him it becomes clear that his abilities have deteriorated greatly and begun to impact his quality of life.  In addition, his blood test on Monday revealed a continued low platelet count which, combined with recent symptoms, rules out another treatment with CCNU as a viable option.  

And so, today Eric made the decision to admit himself into hospice care.

This doesn’t mean that he’s about to enter into a phase where he’s confined to bed on a morphine drip or anything.  At this point, Eric is still able to eat and clothe himself, still able to be out and about (we’re going to the theater on Thursday and the movies on Friday), still able to meet with friends, etc.  But a lot of activities are getting more challenging, and he’s begun to experience a worsening of some symptoms, and the onset of some new ones, all seemingly tumor related.  Communicating can be difficult for Eric, both verbally and – more frustrating, it seems – via text and email.  I’ve watched him spend 15 minutes composing a two sentence email to a friend.  He has no feeling or vision on the right side, and is constantly bumping into door jambs and other obstacles on the right that he can’t perceive.  He knocks things over accidentally with his right hand because he has no idea what is there for his hand to encounter.  He’s also experiencing poor depth perception, which means that simple activities like eating take more time and energy, because he can’t always locate in space what he wants to pick up.  He’s experiencing episodes of what he calls “chills,” and this morning he woke up with a debilitating headache on the left side.

What hospice does mean is that he is waiving further treatment. No more MRIs.  No more blood tests.  No more chemo, or trials, etc.  He is, as he puts it, “done.”

That’s a hard sentence to write, as you imagine, and I’m writing this post through tears.  As a family we are so proud and admiring of the courage and integrity and strength that Eric has demonstrated over the last 4 years.  He has beaten every odd, and has managed to remain incredibly healthy through four surgeries, four different chemotherapy regimens, and countless disappointments and setbacks.  (We are told that he is now a “verb” at the UCSF Tumor Board, and has helped the physicians determine a new method of administering one of the forms of chemotherapy).  He has always been clear that he does not want to fight simply for the sake of fighting, and we are a hundred percent supportive of his wishes.

Some of you, on reading this, will want to reach out to Eric, to see him, email, talk, text, etc.  He welcomes getting together with friends, and hearing from friends, but please be understanding, if you do contact Eric, that it’s very hard for him to read & respond to emails and texts; he now relies on Siri to read his email & text messages and type his responses (thank you, SRI!) but she sometimes doesn’t translate exactly what he says.  So communicating is a slow process for him, and the more brief and clear you can be in your communication, the easier it is for him.

I am here in SF until Saturday May 11^th; my sister and mother will be in town next week; my brother shortly after.  We’re here mainly to support Eric, and we will gladly step out of the way if a friend wants to take him out for lunch, tea, a walk, etc., so please do not hesitate on our account to make plans to see Eric.