So much love...

The memorial on Aug. 4th was an amazing celebration and commemoration of Eric's life, and of the impact he had on so many. The day began with a hike up Mt. Tam with about 15-20 of Eric's friends and relatives -- a beautiful hike, one of Eric's favorites, we were told.  Then we returned to the Tamalpais Community Center, where we were both amazed and humbled by the number of people who came to share in the remembrance of Eric's life.  It was such a gift to us, as a family, to be able to meet and connect with the people who had been so important to Eric.  We will cherish the stories and memories you shared.  Thank you all for attending.  And a very special thanks to Sheri, Laura, Alexa, Grace, and Adrian for all of your efforts and time in organizing the event -- you gave us all a priceless gift.

On Monday, Aug. 5th, Eric's colleagues at SRI dedicated a tree (just outside his office window) to his memory, and held a celebration in his honor.  More great stories were shared, more tears were shed (I'm not sure I knew that tear ducts could produce such an endless volume of tears!), more chocolate consumed.  Our thanks to all of Eric's colleagues, but especially to Rat, Bob, Jeff, Todd, and Shuri, for all their support of Eric, and for the lovely reception.

Celebrate a life well lived!

Please join friends and family in sharing memories and love for Eric at a gathering that will begin at 2:00 p.m. on Aug. 4, 2013, in Mill Valley, CA.

At 3:00 p.m. we'll hold an informal service to provide an opportunity for all to share stories, memories and thoughts.

 

In honor of Eric’s love of really great chocolate, which he usually shared during outings, please bring a chocolate bar.

 

Also, Eric spent many weekends hiking the beautiful trails of Marin. We hope you’ll join us for a couple of organized hikes in Tamalpais Valley from 11:00 – 1:00 p.m. Details to come.

If you’d like to add digital photos to our slide show, please send them to acotter@nonsensical.com 

Note: If you'd like to come, please contact Laura Washburn, laurawashburn@sbcglobal.net, to be added to the Evite. This helps us keep track of how many friends and family members are joining us that day.

 

Light refreshments will be served.  

Location

Tamalpais Valley Community Center

203 Marin Avenue

Mill Valley, CA 94941

SF Memorial--Save the Date

A memorial celebration of Eric's life will be held on August 4, 2013 in San Francisco.  Details of time and place will follow soon. Please hold the date and plan to join friends and family to commemorate Eric's life.

Memories...

Those of you who follow this blog may also have been facebook friends with Eric.  If so, you will have seen the many posts on his timeline sharing memories of Eric's life and the ways he inspired others.

Friends of Eric's have set up a tumblr space outside of fb for those who knew Eric to post memories, pictures, videos, etc. If you haven't used tumblr it's very easy to use, just set up a username and they will email you to confirm, "follow" Eric's page, then you're good to post your memories and thoughts on the site. 

http://ericarons.tumblr.com/

Check out the links on the top of the tumblr page, there will be info updated about a planned memorial service for Eric in the Bay Area in August, and there is a list of charities Eric was involved with if you are moved to make a donation in his name. There are also instructions on how to send pictures for use in a slideshow at the memorial service.

Special thanks to Adrian for setting this up. Please pass this along and encourage others to participate~and if you posted to Eric's fb page, we would be grateful if you would re-post to the tumblr site so that we can collect these memories in one place.

I write with heavy heart

Eric passed away early this morning, peacefully, in his sleep, with family by his side.

He was, as I've written in the last few posts, ready to go, and his end was mercifully quick.  For that, we are all thankful.

Eric wished to donate his remains to research and education, and we have honored those wishes, in hopes that the cancer researchers at UCSF will be able to glean information from the study of his tumor that might one day lead to the discovery of an effective treatment for future glioblastoma multiforme patients.  Nothing would make Eric happier than to know that he could contribute to scientific progress even in death.

A funeral service will be held in Michigan on Tuesday June 18 at 2 pm at the Dorfman Chapel in Farmington Hills; those wishing to attend should check the chapel website for details.  Plans are also in the works for a memorial service in San Francisco later this summer.

To all of Eric's friends who have been following this blog and have shared your warm thoughts and wishes and support over the last four years:  thank you for being there with him and with us.  He was a lucky man to have such a loving community of friends.

Update

Just a quick update to let folks know how Eric is doing. Mom, brother Bil and I (big sis) arrived last night. Over the weekend, Eric was able to "virtually" participate with the rest of the family in Nicolas's coming of age ceremony and enjoy a nice dinner with friends. On Monday, he stopped taking steroids. When we arrived Monday night, we brought his favorite Michigan meal (a "make it larger" Olga sandwich) and a piece of homemade chocolate cake. He devoured these and we talked and hugged and he went to sleep. Today he has slept all day--rousing slightly to take some meds, but not eating or doing anything else. He seems very relaxed and peaceful and does not seem to be in any pain.

Rage, rage, against the dying of the light...

Several months ago I was reminded of Dylan Thomas's famous poem "Do not go gentle into that good night" when thinking about Eric's attitude toward the fast-approaching end to his own life.  Eric wanted, in fact, to go as gentle as possible; he seemed, in the last few months, to have come to peaceful terms with the awful hand he'd been dealt, and worried more about how hard it would be for us to have to lose him than for him to go.  "I'll be gone," he'd say, "I won't have to deal with it."  I think we all  were inspired by his brave reconciliation to the cessation of his life.  He wasn't interested in fighting death for every last second of life, as Thomas urges his dying father to do in his poem; he wanted quality of life or none at all, and hoped, above all, not to live for a prolonged period with the terrible disabilities that the tumor might produce.

The disease doesn't pay much mind to it's victims' wishes, unfortunately; and Eric is now in a place he never wanted to be.  His functioning has deteriorated greatly over the last couple of weeks.  He has to exert enormous effort to stand up -- his right side is completely numb, and doesn't seem to obey his mind's commands; when I observed to him that it looked as if his limbs felt like they were encased in a suit of armor made of lead he said that this was exactly how it felt to try to move.  Walking is precarious and slow, and he uses a wheelchair if he needs to go more than about ten feet.  He is often disoriented and has enormous difficulty finding the words he needs to communicate his thoughts, feelings, and needs. The steroids he is taking to lessen the inflammation in his brain give him a ravenous appetite, and he eats an astonishing amount at each meal -- which also means he has put on quite a bit of weight.  He may not be interested heeding Thomas's command to "burn and rave at close of day," but the steroids in his body make him perversely hungry for sustenance.  They also make him emotionally volatile and quick to anger and frustration, although when friends come to visit he perks up and reverts to his old charming, witty, sly self.  His sense of humor is as sharp as ever, and when he's rested he can pull some amazing facts and stories out of his memory.

He is in need, at this point, of company 24/7, to keep him safe and to help him take care of his daily needs.  He is still able to do many things on his own, but everything that we all take for granted takes him enormous effort and energy.  He spends a good deal of the day sleeping -- we joked when I was just there that he's on a dog's schedule:  that is, a day full of power naps punctuated by meals, pee breaks, and "play time" with friends.

It became pretty clear over the last week that the trip to Michigan was not going to be possible in the condition he's currently in, so we will be skyping with him over the weekend so that he can participate virtually in his nephew's coming-of-age ceremony. After the weekend, family will return to SF to be with him.  We know we are seeing the dying of the light now, and we'll be at his side, giving what comfort and support we can to help him go as gently as he hoped he would.

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.

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.

When "bad" means "good"?

As you recall, the initial result from CCNU showed tumor growth. We decided to continue with a higher dose, but really, my expectation was pretty minimal. In fact, the expectation was SO low that today, when I was told about how my tumor had grown slightly (smaller than the last time it grew), I was thrilled! Yes it grew bigger, but less so than the last time?!? Party time!

At this point, because this tumor cannot be stopped entirely, I'm definitely enjoying one day at a time. In fact, assuming I still qualify for the next cycle, we might try to hit the chemo a little more intensely.

Apology to those who have recently called or checked in. I will touch base soon. However, I just celebrated the event by eating a big cookie, and now it's time to sleep....