Saturday was beautiful. We had the memorial on Ocean Beach. I expected cloudy skies and at least wind (OB is notorious for having crap weather), but it was beautiful out. 70-75, sunny, no clouds and a light breeze.

I was (obviously) anxious and nervous, but everything turned out perfect. The sun even set at the perfect time. Burton had designed these massive wooden dinosaurs in undergrad and I had three amazing friends who worked their asses off for a week to make them happen on the beach. Countless friends that helped out with everything else – our friend Gabe graciously led the memorial, others put up decorations and a memory table for him. Our friend Natalie read this poem by Dylan Thomas that we both loved:

And death shall have no dominion.

Dead men naked they shall be one

With the man in the wind and the west moon;

When their bones are picked clean and the clean bones gone

They shall have stars at elbow and foot;

Though they go mad they shall be sane,

Though they sink through the sea they shall rise again;

Though lovers be lost love shall not;

And death shall have no dominion.

I also had everyone write a note on a piece of wood to Burton that put in the fire as a last goodbye. The wood was untreated red oak and as it burned, it smelled SO good! It reminded me of a wood shop, which reminds me always of Burton. We then went off to a friend’s place for a house party – Burton’s favorite kind of party 🙂 We even filled the clawfoot tub with ice and put beers in there! And the food was catered by Brenda’s French Soul Food, one of Burton’s favorites. He would have approved!

I’m happy I had many of our friends together with me, all in one place. I really could feel a small burden lifted off my shoulders – I wasn’t the only one grieving, there were many more people that felt that same hurt and ache as I did. People were crying just as hard as I did by myself. Spread out amongst all of us, the pain and loneliness I had been experiencing got just a tiny bit easier for me to bear.

Like I’ve mentioned before, I’m going to stop this blog where it’s at. I hope that others can still read this and find it useful if they are still on their cancer journey. However, I find that I have really enjoyed writing, even if I’m a complete amateur. It gives me a place to share and to be completely honest with myself and it helps me process when write out what I’m feeling. So that means there will be another blog up soon about grieving, traveling, and self discovery. My FB friends will see the posts and if you want it, message me for details 🙂

I love you Burton, and I will miss you each and every single day. Goodbye ❤

I wanted to post these today: 

They are beautiful portraits of us, gifted to us by a fellow Burner named Wayne. I love them because they kind of show the wild side to Burning Man – we’re posing with a weird prop and the backdrop looks ominous, like right before a massive thunderstorm – while looking terrifically professional. There are many wonderful people that roam Black Rock City, giving out gifts like this, I received a great Polaroid portrait of Burton and I last year from another kind stranger.

A friend happened to be looking through Wayne’s website a couple weeks ago and found us. This was when Burton had just been admitted to hospice. I “claimed” our photos via email, I let Wayne know what was going on with Burton and thanked him for giving us such a great gift for what turned out to be Burton’s last Burning Man. He came back with this:

Hello Emily,
I’m saddened to hear about Burton. This makes my heart heavy. I’m honoured that I was able to give you guys something from his last burn. A small token I know, but hopefully one that will be cherished.

The irony about this is that I’ve launched a “real world” version of this gift and yours and Burton’s story is exactly why I launched it. To gift meaningful photography back to people. Mostly people with limited means but essentially to anyone who I can make a difference for. In order to make this project a success I need as many eyes seeing it as possible. Please consider following, liking and sharing it to as many friends as possible. I’m hoping to hit the road with it after next years burn and will work it as long as there is a demand for it.
www.fotosforward.com | www.facebook.com/fotosforwardproject | @fotosforward on twitter

Thank you so much for being part of my photographic gift. I’m so sorry to hear about Burton and please give him my thoughts.

At a loss for more words,

Much love to you both,
Wayne aka waynerd aka Lens cap

Please visit and support! His gift to us was so incredibly meaningful to me and will probably be one of the photos that I print out and set up at the memorial this weekend.

Enough about photos…

My big reveal is that I’m quitting my job (which I’ve already told you guys about) and am going to travel for the next six months to a year! I don’t know where I’m going or who with or how long exactly, but I plan to pack up my belongings, sublet my room (with John’s permission of course – Hi John, we have lots to talk about when you get back from London this weekend) and ship myself off to some places I’ve never been. I’ve always wanted to travel, but being with Burton meant that we could never really take any trips abroad. We were able to pull off Taiwan and Japan a couple years ago, but that was when he was healthier at the beginning of his cancer. We soon were deprived of any further opportunities, especially with school and work.

I did mention earlier in the blog that I did want to travel to a couple places to scatter Burton’s ashes. I think I’m going to limit that to Vals, to give me focus. For now, the plan is to pack up my shit by mid-November, hang out with my parents in Michigan for a couple weeks and head first to Morocco, where my friends Amir and Judy are spending Christmas and New Years. My friend Ellie is headed on an extended trip of her own and will be in Indonesia in January, so I’ll probably hop there afterwards and she how she’s doing. Perhaps the good end point would be Vals, to scatter his ashes and say a final goodbye. I want to take something of his on my journey that will remind me of him – maybe the beautiful pendant that Gabe made him a couple months ago.

I’m incredibly nervous, because I’ve never really taken an open ended trip before. Nor have I ever really traveled alone. You guys know me and letting go of that control is something that’ll be really hard for me, but good for me too. I was just considering travel as an option this weekend and saw this while out at brunch with Mary:

I think it’s a pretty good sign that I should go and get busy living.

Burton’s memorial is going to be this weekend. It’s soon. Despite me wanting to keep it small, there will be about 70 people there, and that’s totally okay. I just have to make sure we have enough food! My mom and some of my siblings are coming too, which was a total but welcome surprise. I’m also really excited because our friends Chris and Mateo are trying REALLY hard to pull these dinosaurs off. Burton had designed and built them years ago and it would be amazing to have them on the beach with us. Everything else for planning is falling into place and I’ve found that the answer is really just to keep things simple.

I went to our friends Mark and Theresa’s wedding this weekend in Tiburon. It was a gorgeous, beautiful outdoor wedding with the best food and drink ever – Mark is a chef and Theresa loves food (obviously) and they killed it! My favorite part was the whiskey bar. It was also one of the most fun weddings I’ve been to because it was local and all our friends were there. I remember one moment distinctly – we were going through the toasts at dinnertime, I’m totally the girl that cries at all the weddings and I was barely holding on. They finished up and Mark gave one last toast to “our friends here now and the ones that aren’t with us anymore” and I just completely lost it. The next thing I remember was being hugged by both of them while I bawled my eyes out. I probably embarrassed myself in front of everybody, but it was so lovely that they said something about Burton. I’m kind of tearing up just thinking about it again. Just wanted to share 🙂

Martin and Molly, plus the beautiful fall inspired table settings! And lots of wine!

Amazing menu for the night! My favorite was the grilled hen – maybe it’s time to make a trip to Commonwealth for dinner!

In other Emily-specific news, still holding on okay, but I’ve been grappling with a couple things lately:

1) Still lonely, beyond all words. I keep waiting for Burton to text me or to walk through the door to meet up with me for dinner. When I find something interesting or cool, I reach for my phone and then realize he’s not there anymore. I’m missing my partner-in-crime, I’m missing someone that I can share anything and everything with. I’m surrounded by friends but still so, so lonely. I’m slowly going through his stuff and sorting out the important things. My inner OCD wants to do it NOW, but I want to take my time and let it settle in.

2) It’s hard for me to have sympathy for other people’s problems right now, especially if they are relationship problems. I just can’t. All I can think of is “well, at least this person you’re having problems with is still alive.” I know it’s unfair, because everything’s relative, but I just can’t deal with it right now.

3) Anxiety! Of course. But this is more about my future. I told work today that I wouldn’t be coming back. They’ve been so good to me and so supportive, but I really need some time to myself, to regroup and not be stressed out. I really doubt I’d be doing good work anyways, because I’ve been so distracted that I can barely concentrate on simple tasks, like doing laundry. So yeah, I’m going to be a bit selfish and not work for at least 6 months to a year. What will you do with that time, Emily? Tune in tomorrow to find out…

I’ve been staring at this blinking cursor for a couple hours now, not sure what to write. I can’t believe it’s only been four days since Burton left us. It feels like it’s been years. I feel tired and old.

There has been a flurry of activity since he passed away on Sunday – I went to the mortuary with his dad to make last arrangements (they get half of the ashes, I get the other half to scatter in Switzerland). The mortuary was a bit unprofessional, but I think I was spoiled by Zen Hospice. A mortuary is a business, after all, and they just want you to pay them. Our friend Chris had a really good point: all the important things in life – birth, marriage, death – all have huge price tags on them. I went for the simplest stuff I could, but it was still well over a thousand dollars to get everything done. And at the end I will get Burton ashes in what basically is a cardboard box. Sigh. (I, however, am excited to look for dinosaur urns for him!)

I’ve also been trying to stay busy by planning the memorial on the 18th. It’s coming up really soon. I researched bonfires and applied for a beach fire permit for Ocean Beach and also spent some time researching possible venues for dinner/drinks after. I was getting unnecessarily stressed out – with a nice venue comes a hefty price tag for food and alcohol – and then our friend Leeh came to the rescue and offered up her house. It came to me as a relief. She has a beautiful place that we can decorate and organize the way we want. And Burton’s favorite kind of party was a house party, so we’re going to spend the money we save on the venue on lots of great food from Brendas, one of his favorite places (hopefully! I still need to call them). And of course, some of his favorite beverages: pumpkin beers, PBRs and old fashioneds.

Clearly, I’ve already planned the party portion. But I’m still stuck on the actual memorial. I still don’t know what to do, exactly, and its ten days away. It feels weird planning these kind of things. What if it’s too short? What if nobody wants to speak and share? What if it’s super awkward? I know nobody will think that, but my anxiety is getting the better part of me. I should have some kind of program written up or at least thought out, but I really just don’t know.

Apart from the flurry of activity, I’ve been feeling okay. Not great, but not too terrible either. I don’t think it’s fully sunk in for me that he is actually gone. We were long distance for so long that I’m used to not seeing him all the time, so it just feels like he’s somewhere else. Maybe he’s in Boston? I also have a serious problem with anticipatory grief and somehow this real grief feels really similar to that fake grief. I used to mourn him even when he was still here and mourning him when he is actually gone doesn’t feel all that different. It definitely hurts a little bit more, though.

Again, I’m sure I’ll break down in a couple weeks and just feel like absolute shit for awhile. I’m lonely, sad, frustrated and a little angry, but I guess that’s just all expected.

Michael Patrick Burton died at 3:30pm this afternoon at Zen Hospice in Hayes Valley, San Francisco. He was surrounded by love – with me, my parents, our friends Mary, Chris and Martin. We were playing calming music, thought to switch it to Daft Punk (his favorite) and he took his last breath.

I’m going to miss you. I love you so much. Goodbye.

The past couple days have been spent contemplating life and funerals and memorials. I realized funerals/memorials are much like weddings – you can do anything you want! The problem is, I’ve gone to about ten weddings and I’ve never gone to any funerals. I don’t know how it works at all.

Talking to friends have helped. Theresa helped me realize that it’s okay to be a little “selfish” with the memorial. Its for him, but it’s really for me and everyone else to say goodbye. I was also anxious because I knew I couldn’t stop his parents from doing their own religious memorial, even though he had specified non-religious. She’s helped me realize that it’s okay too – his parents need to be “selfish” with their memorial and if that means they don’t respect his last wishes, it’s on them. I’ve come to terms that he wouldn’t be angry or disappointed in me for letting that happen.

Reading some books have also helped – Living at the End of Life is a very practical guide for steps to take and choices that people may have. Also really great for lots of other end-of-life questions.

So I now have some kind of idea. I want it to be a celebration of life, because Burton has always been so silly and sassy. He wouldn’t want his memorial to be somber and depressing. Theresa had the great idea to think of it like a surprise birthday party, with things he really loved.

I know I’d love to have it somewhere outdoors. In a park, or maybe a beach. Everyone can wear sandals and a pedicure is required! (He has painted toes right now and everybody is commenting on how awesome they look.) I would want everyone to bring something that reminded them of Burton to place in a pyre with flowers and photos – maybe we’ll just pull the pictures from his hospice room. We’d do the memorial, which could include several friends and mentors speaking about him and an open mic time slot. We both really like Dylan Thomas’s poem And Death Shall Have No Dominion. It would be perfect for a final ending. Then we could burn everything up, say goodbye and have food and some beers (PBR, duh) to celebrate him.

In hospice land, his mom was a pain in the ass today and bitched about us not giving them enough time with him when they’ve been getting roughly 10am-2pm every day. Must. Ignore.

We put up even more photos today in his room, and Brett brought Jake and Finn to keep him company. Havy got me a Daenerys Targaryen and she’s chillin’ with the homies too.

Here is a Flickr album of all the photos that are on his walls. Thanks Lian for putting that together! Amazing idea. There are so many I love and each and every one has an awesome story behind it. (Yes, he is friends with Meryl Davis, Olympic Ice Dancer! He met her in the dorms his freshman year.)

Okay. Bernard is here to say hi and we’re heading home after. So sleepy. Be back here at 9am sharp!

When I started this blog, I had just finished following another story: Dave and Billie Jo and their journey with her breast cancer. I wish I could remember the URL of the blog. Dave wrote his entries with this raw passion and truthfulness that broke my heart, but I was extremely grateful for it. He was unafraid to dumb it down, he swore and said shit, fuck, damn it all to hell. It was Billie Jo’s wish to die at home and he posted photos snuggling with her and/or their dog on the hospital bed at home almost every day, until the end. These last posts were serene, sad and beautiful moments and I felt his love through the screen of my laptop, so intensely. And I learned immensely from his experiences, as I knew I would have to go through the same thing one day.

So, that was one of my stipulations for my own blog. I wanted to be as truthful as possible. I wanted to truly help other people with this cancer and in that I wanted no censorship, because god knows that this nation is already in denial about death and dying and terminal illnesses.

The blog was also started to keep family and friends across the world informed about Burton and his health. When Burton went through his first scare in April, I was getting tired of typing the same thing to twenty different people. Through the next six months, many of these individuals have expressed to me that – through the candidness of the blog- they felt that they were right next to us every step of the way and that they appreciated this because they were far away and couldn’t be here.

The reason I am writing all this is because an online stranger was unhappy that I posted pictures of Burton in his hospice bed (the last post). They thought that I should’ve gotten Burton’s (and his parents’) permission before doing so, because I am posting photos of him dying and dying is a private matter and should not be on the internet.

I am upset about this because now I do feel guilty, even though I shouldn’t. I’ve shown the post to all our friends, who have assured me that it was okay, Burton would’ve been okay with it and that it was a beautiful set of photos, but I still can’t help it. I created the post to show how much love Burton is surrounded by, but now it’s tainted. Why are we so scared of death? I must add that this stranger is quite a bit older than my generation and may have different views toward online privacy, so I really shouldn’t be upset. But now I am going to question myself. I am currently anxious, insecure and super scared of doing something wrong, whether it be getting the title of “that annoying girlfriend” at the hospice, or overstep my bounds as DPOA with his parents. My OCD mixes with my desire to be, act and do everything perfectly in this shitty month.

I’m really tired and going to bed. To you, online stranger – yes, you hurt me with that comment. I hope you’re happy.

Yesterday, I expressed my displeasure in not being kept up to date with Burton’s drug schedule. Hospice by the Bay apologized, but it was too late by then. The miscommunication resulted in a standoff with his mother, where she declared that her son was in fear, scared and should be getting valium, morphine AND lorazepam. Oof. (She herself has been historically doped up as much as possible, which is opposite of what he typically prefers.)

So he’s only on morphine right now, once every four hours for comfort, breathing, agitation control, everything. Glad that cleared up.

I was just also not happy with the Hospice by the Bay nurse that came over yesterday to fill in for our normal nurse, who was off that day. She just did not have the compassion to try to relate to my concern, told me that “it’s better safe than sorry” and essentially guilted me into a decision. I mean, I get it. After some research yesterday, I totally understood that it’s not just for pain, but for agitation or breathing problems too, which Burton has. I just really didn’t appreciate her attitude and inability to allay my fears. I felt brushed off.

(Meanwhile, Burton’s mom is sitting there making underhanded comments about how she doesn’t want her son to suffer. Me too, madam. Me too.)

However, at Zen Hospice there is an overnight nurse, her name is Hilda. She is from Ireland and has this lovely accent. She took such good care of us the first night around and I trust her completely. When she came in in the evening, I was able to ask to ask her questions and to understand why morphine was given and why it should be continued. She suggested a tryout period where we delayed a dose a couple hours, so we did. All that resulted was a bit more blinking than usual. His breathing also wasn’t as smooth. So yeah, he’s going back on morphine, but I was able to talk to him a little bit before we “put him under”.

Also: My parents are here! They are lovely. Everybody at hospice loves them and so do my friends. They get hugs from my friends when they leave. So cute. They are also adorable – my dad has been giving Burton leg/foot/hand massages while my mom has been swabbing his mouth to make him feel comfortable. They’re so amazing and I am fully enjoying my time with them. I do love that they are here – they are a great buffer during the day when Burton’s parents are around too.

Last but not least, photos!

Burton snoozing by his photo collage – I requested that the photos were sent in by friends and family. They are photos of him, mainly from college to now. We’re putting more up as we get ’em!

Furry visitor Growler – dressed up in a Trex suit!

Snuggling with Growler – he’s the best therapy dog

Gave him a t-rex tattoo 🙂  

My turn for snuggles 🙂

Today was our first full day at Zen Hospice. It was nice. I had mentioned to someone offhand that Burton loved lobster truffle mac and cheese – jokingly of course, because he can’t eat anymore – and the chef at the hospice made truffle mac and cheese for us! Sadly, we were really busy with visitors and I didn’t have a chance to try it. Still, it’s the thought that counts. I’m going to try to find him and thank him tomorrow. It’s been really great here. We’re getting the hang of having visitors and cycling people through to hang out with Burton and see him.

However, last night he was pretty fidgety and agitated so they had to give him some morphine (lorazepam didn’t work). What they didn’t tell me was that they continued to give the morphine all of today, every four hours, on orders from the doctor, who hasn’t even seen him in person ever. I was a little upset that they did not inform me of this. I was wondering why he was so sleepy and unresponsive today and chalked it up to more decline. The whole time it was morphine! I’m going to ask them to stop it during the day and only give it to him at night if the lorazepam doses don’t work. He has no pain right now, there really isn’t any reason to be giving him pain meds.

Phil and Molly nabbed me and took me out to Zuni Cafe tonight for dinner, where I had the best roast chicken ever. It was really nice to get out of the house and outside. We had a good conversation about the current mom situation and I realized that I am able to be get through my days because I have the support of many dozens and scores of people. She doesn’t have friends like mine – she is alone and having to do this pretty much by herself. It’s still not an excuse for her behavior, but I think I am well on my way to being at peace with this – not seeing her as an object of anger but something else – maybe sadness?

I really miss Burton. I miss his smile, his grin, his voice, his pecks on the cheek – everything. He’s still here with us but I miss him all the same. I was looking through my photos yesterday and I have one of him sitting outside in his wheelchair at a cafe, drinking a soda. He could still smile back then.

Super tired. Sleep time – but for now, some photos of Zen Hospice. We’re still decorating his room, but I’ll post up a photo when we’re done.

Dining room area

Living Room

Front door/Foyer

Burton outside snoozing on the deck 🙂

New word today, for when someone attempts conversion. New word, new shit to deal with. I’ve gotten Pascal’s Wager thrown at me so many times – I think its a pretty bullshit reason to believe in god.

For the record, some good reasons why you shouldn’t try a deathbed conversion on a vehemently non-religious person:

1) “The psychological comforts of religion do not appear to be of universal necessity.”

2) This makes it about you and not about the dying person.

3) It’s just straight up rude.

Just FYI, I love our chaplain here. He is an atheist dude who went to Harvard Divinity school. What a badass.