Tuesday, March 31, 2020

Love in the Time of Corona

Wow, what a time to be alive! is all I keep thinking.

I woke at 5:30am and so using the quiet space to update this blog. Found I was mentally ready to write again and decided to just do it ASAP before diving back in to Twitter to watch the world implode (and as I said on the other social network, Twitter is really, really good right now if you have curated your feed with smart friends and co-workers, politicians, journalists, pithy pundits, celebrities, and sports figures you respect. Lots of trenchant commentary and perspectives at a time NO one knows what the hell is really gonna happen = hard-hitting content).

First of all, I’m so very sorry we could not pull off Doug’s Big Fat Memorial as planned for April 11. As soon as I started sending out save-the-dates, it became clear that this virus was going to be virulent enough to keep it from coming off. My hope is that we will be able to still hold it in the grand style Doug really wanted, and the pent up energy to connect with each other by then will make it even more meaningful. I’ll re-announce it here whenever the fuck things stabilize enough to even plan this kind of party.

Secondly, yeah, dealing with implacable virus precautions + paranoia and extreme social isolation is a double serving of a drippy, sloppy shit sandwich and turns our world upside down again. All the sweet, warm check-ins from so many of you mean a lot. And we are ok! Clara and I are getting along so amazingly well and really partnering on living this new life in lockdown- and that is what matters to me most right now. That, and trying to keep us both healthy. If I even *think* about what happens if one of us has to quarantine from the other, I break down. I am already so emotionally weak. On the brighter side, wanted to share...

Things that are helping:
  • Getting double the amount of “ILY”s from Clara any time day or night and over SMS. Melts me.
  • Taking yoga and pilates classes over Zoom that my amazing studio Innerstellar offers (lemme know if you wanna join and may be able to get you a free pass). Clara often joins me, too!
  • Grating ginger root (a big piece), juicing it from a coffee filter into a shot glass. Then squeezing one lime into that glass. Shake a bunch of cayenne in there and a squirt of maple syrup to soften the sour up and BAM! you feel immunized. This is a morningtime activity.
  • Doing the hardcore, 30 minute power walk with Clara in the hills right outside our door. We pass no one!
  • Heating up and eating some of the super tasty curries and rice dishes that Yomi made and froze for us during his last trip over in December.
  • Having long conversations on the phone for check-ins with friends vs. the typical string of texts.
  • Taking long, bath-bombed tubs with candles all around.
  • Listening to two Boards of Canada-inspired playlists on Spotify that really bring the heartbeat down. I mean, mood-changing stuff! This is one Timmmii made and then Peter was inspired to do one, too. Both really long to get your groove on. (And best with headphones.)
  • Going on long, fast drives over the bridges and through our cities. The streets are hauntingly empty.

Please tell me some of the things that are keeping you all kool.

And sending all the love and luck out to each of you as we go through this monumental and difficult time.


-Candace

Monday, March 9, 2020

Doug's Big Fat Memorial

DISCLAIMER: Listening to Check your Head pretty loud in the house so I am in a mood....

It seems totally appropriate to pen the first post since the last one by announcing the party to you all.
It took some doing, but I found the perfect big ass indoor/outdoor warehouse space to throw a proper gathering for all you motherfuckers to celebrate Doug Fuller in the style we both discussed. All stops are being yanked out for this one, friends. Post-Ghostship & general real estate mayhem, this was no small feat. Big thanks to Yomi and Mr. Tom of We Are From Dust for hooking up the location. And major props to the design genius Catie Magee (aka Tits Magee) for the above design which will brand this night for years to come.

And you are all invited! In order to get succinct, yet amusing updates on what is gonna go down, you will need to RSVP if you can make it. I know it is Easter and that this fucked up virus is circulating - so what better time to celebrate life? Fine to bring an SO but please indicate this when responding. We will have security and greeters due to the location, so capturing an accurate guestlist is hella impt. Expect a rated R/XXX event. Thanks for not referring to this on any lists/sosh meeds.

The Deets

When: Saturday, April 11th
Where: China Basin area in San Francisco (addy to come closer to)
Time: 9pm till 3am
What: Variety Show of Shenanigans and Performances fueled by Hand-Shaken Cocktails & Light Southern Fare (ha)
Attire: Fancy AF or Klown Black Tie and we will have a coat check
Bring: Item for the Doug Altar, flask with your fave elixir in it, good intentions
Plan: NOT to drive. Please Lyft. #deleteuber Parking sux & it's just safer
RSVP: Please email visit.klowntown@gmail.com to request an invite and include addy for your SO. Formal invites to go out in a week or so.

This event will be as multifaceted as Doug's personality was and it is basically already 80% planned- has come together rapidly and naturally. Cameron aka Teiwaz is helping me project manage it, so please be in touch with him if you have big ideas.

ALSO! I am thinking of having a "Happy Hour Yard Sale" of some of Doug's things on Friday night before the party. He was a crazy collector of all sorts of things: silk ties, eclectic LPs, ceramic clowns, beads he made necklaces from, tons of quilting fabrics, beer brewing equipment, and on and on.  I will be keeping lots of stuff for Clara who will want it when she is older, but reallly want to release the stuff into the community for reasonable $$$. All proceeds will go to the 529 education account I just set up for Clara. Stay tuned for more info on this...

More and other thoughts to come.....

Big love to you all-
Candace

PS: Wash your hands, wipe shit down and breathe.






Tuesday, December 31, 2019

Obituary





Still Life of Doug Fuller, by Nettie the Horse



Hi folks-
Today is both lighter and heavier. We had a moving and very sweet funeral at Chapel of the Chimes in Oakland, where I received an urn of Doug's ashes. Many thanks to those who were able to make it.

I wrote a few versions of his obituary, a painful yet cathartic process, just like every blog post here.
See it as it ran in the print and online versions of the San Francisco Chronicle today, making it oh, so very official.

Clara and I are very intentionally trying to close the book on 2019 and celebrate the beginning of a new life in 2020.

Again, I must say this fast tragedy has been a lot less painful thanks to the voluminous love and support in all forms these past six months. Clara and I will be grieving for a while, and sifting through the rubble to figure out what is ahead. No big decisions yet, I know I know.

Please keep tuning in here for updates. As soon as I find a local venue that can comfortably hold 400 folks or so (PLEASE SEND RECOMMENDATIONS), we will book it and start planning the memorial that Doug expected.

And yes, let's all honor Doug by living life to the "Fullerest" - one of the greatest lessons he left behind.

Much love,
Candy & Clara





Friday, December 20, 2019

RIP Franklin Douglas Fuller



2015 family photo shoot

Oh, dear readers. It is with very heavy heart that I write the news of Doug's death on Tuesday, December 17. He was diagnosed with glioblastoma at the end of June, and left us just six months later. Yes, it was super fast. We had half the time together than I expected. But we are finding great comfort knowing he did not suffer any longer than he did. His last words were "UGH!!!" and "I don't want to do this anymore!!" - and he really hated being bed-bound and with zero agency.

[WARNING: EXPLICIT PHOTO OF DOUG'S FINAL HOURS AT THE END OF THIS POST]

He was deeply cared for by so many leading up to his last few days. Yomi was with me as we helped sedate him after being so agitated and uncomfortable. I will forever be so grateful to him for his gentle bedside ways with Doug when I was only frustrated and angry.

Let's remember him this way

And Doug knew he was going to go this fast. He told me three weeks ago "I don't think I will make it to Christmas" which I really refused to believe. I wanted to punch anyone who suggested he might meet an earlier demise in the throat, actually. But he knew all along. I have been getting signs of this that prove he wanted it to be just this way to limit the suffering of him and us who surrounded him.

The tsunami of tributes on Facebook is amazing to behold. So typical that someone is so grandly recognized posthumously. By attempting to keep the news of his diagnosis off Facebook, many people had no clue he was even going through this. That is how fast it happened. And I am very sorry for those shocked by it now and learning about it on social media.

In late July- the bond they shared was so precious
But we are taking comfort knowing he was able to spend lots of quality time with blood and chosen family these six months, and we remapped our lives to make that a special experience for all.

There is so much to say, and Clara and I need to catch a plane to finally see my aging folks in North Carolina. Watch for a formal obit soon.

And yes, we are gathering very close friends and family from all points around the world for a very small church service to remember him soon. Due to space constraints, we must make this invite only, unfortunately. PLEASE KNOW that we are designing a proper festive event full of fanfare and celebration for him in a few months- just like he wanted- and we will welcome anyone who wants to be there at that time. For now, we need to circle the wagons to grieve while emotions are high and in a way that respects all the many sides of Doug Fuller.

How did he go? I know you want to know. The best news is that he waited for me to let him go. Per the direction of our amazing hospice nurses, he had been in a deeply sedated state for 24 hours, snoring with mouth open and wheezing and not waking up. I thought he would come out of it. And it was so creepy and upsetting to see him in that state.

At 5am, something moved me to come find him in the room we made up for him. Many suggested I tell him it was ok to go, to release him, and that Clara and I would be ok. So I did that. Thank you Molly, Sydney and Amani for this counsel. He opened his eyes for a moment, closed them shut, and gave me five more increasingly slower, labored breaths before he slipped away. I know he was waiting for me to be by his side, and I know that he heard me. And that is what is saving me from extreme hysteria right now. He did not die alone.

Rest in Peace and Power my dear, sweet husbear. I feel you still with us and can't stop crying and telling you how much I will miss you, something I wish I had the chance to say much more than I did.


Camp Tipsy tee and bow-tie



Wednesday, December 4, 2019

This One is Laden with F-Bombs


Morning ritual: coffee and lap time with Stinker
Dear friends-

Had been waiting for Doug's return from the Big European Adventure with Camron and Timmmii to post, which extended to after Thanksgiving, and here we are.

Tl;dr- The Shit is Hitting the Fan

Doug has dramatically slowed down and requires a fuck-ton more assistance to move through life. He uses a walker in the house to get around, and takes many very long naps daily. We are thankful for so many things, including the fact that his appetite remains big, he has no major body pain and uses no opioids, and has zero nausea. But his mobility is severely limited now, sight is fuzzy, and confusion is greater. Leaving the house is a once a week thing. He needs help getting dressed, taking baths, making a sandwich, locating his water bottle, etc.  We are adjusting around it all and trying to stay calm but that doesn't always happen.

NB: We are limiting visitors quite a bit since he is sleeping so much of the time. Small pockets are still possible, but less of them. The mood can be dolorous, so go with it if so. Please keep coming to visit.klowntown@gmail.com to schedule visits, and many thanks for your patience because it won't always work for a thousand fucking reasons. Also, he isn't really using his phone much, and email not at all. I screen when I can and read sweet things to him that pop up. Lastly, I keep coming across people IRL who painfully admit that they have not reached out at all because they didn't have the words. Let me encourage you now. YES YOU DO. As long as its positive, supportive and succinct, YOU DO. So send away. It's about the gesture. You are not bothering us! Just can't always reply. This is one of many big lessons learned about grief and coping, so passing that shit on.

And way up front here, I want to show my deepest gratitude to the many friends who are are elbow deep in this with us, offering  strong counsel at a time when big decisions constantly need to be made. Because of those conversations, lots of great things are on deck:
  • In-home care kicks back in Tues-Wed-Thurs while I go to work and
  • Hospice is coming here to assess our sitch and will take over all of Doug's care
  • Many, many subscription services Doug can no longer use are being shut down and billing halted (thanks, Tina!) Getting this kind of minutiae handled is tedious af but so necessary and a giant weight lifted
  • We are Writing Things Down regarding the kind of memorial service he wants, and that is good
Clara just turned 16. Doug was able to pick out a gorgeous pendant from one of our favorite jewelers, Pave in Rockridge, which designed our wedding rings. We bought her a citrine stone ringed in diamonds on a necklace as the big gift to mark the occasion and she was beyond touched.

And she is really maturing even more through all of this. She is helping me do more things around the house because she sees how overwhelmed I am and is integrating upward with me. The sisterhood-like bond that is developing between us blows my mind on the daily. Clara has a serious goof-ball side so we find ways to express that with Doug as much as possible. She says the most touching things, always via SMS, and my heart stops in a good way. This see-saw of emotion is making the wild ride all the crazier, but see-saws have been kind of the norm in our whirlwind chosen lifestyle so....

One of the things she typed me the other day was about how "...we will be happy like before again", and I believe her.

Being a mother trains you to deal with intense caregiving but doing it for your spouse never stops sucking. For instance, sitting down for more than 10 minutes at a time doesn't happen unless Doug is sleeping. My hot flashes flare like crazy and he is always cold so adjusting the Nest is a constant. And Doug just feels humiliated by how much he has diminished and how little he can contribute, even though we constantly try to reassure him. Hugs bring tears. Yes, we are doing Google Hangouts with the psychiatrist weekly and yes, we have amped up his depression meds. Coping all the time, while feeling the doom grow, is fucking exhausting - so this additional help is timely.

It has been less than 6 months since this bullshit situation took hold, and already I am nostalgic for how much easier things were in September. We purposefully jam packed a LOT of trips and experiences in when we knew Doug could do it all. That all came to a screeching halt a couple of weeks ago. The whirlwind may have worn him out, but that is the calculated risk we took. Sitting around waiting on cancer to sink in really wasn't an option.

And yes, Doug had the trip of a lifetime with his two buddies- and the scenes he shared from the Scottish Highlands showed how much fun they all had. (I won't say more on this- watch for a blog post with lots of pix about the trip soon. It was all over Camron's and Timmmiii's Insta)

klown, bunny, klown

The trip was planned and paid for nearly a year ago. We realized Doug would be flying home solo late in the game, and that was not going to be a tenable situation for anyone. Neal Kaptain made the brilliant suggestion that I fly over to meet up with Doug in London, and attend the huge London Burning Man Decompression party going on at the same time that the boys were going to already, then fly back with him. Our great friend Yomi, the Londontown perma host and old skool drum & bass DJ was scheduled to spin at 1am. Eight rooms of techno, 1400 people, and Scumfrog was gonna be there! So I bought a fast ticket and made arrangements to be in London for 52 hours to collect Doug, doing a deep long afternoon hotel transition from Timmi and Teiwaz to me, then catch a late night rave, see the Christmas markets, and hustle Doug back home. Having that time on the plane with him was magical, too. We talked about so many deep things, which I journaled, and made plans for Clara.

On the plane, Doug talked about how much he missed Clara and I while traveling. He repeatedly said  that all he wanted to do was snuggle with us and watch movies when he got home. His days of going downstairs to the Klown Bar are over, so I decided to buy a huge, cozy sectional couch (with two power recliners) and a big new TV on a rolling stand so that we can have a new nest upstairs. i was delighted to realize, that, finally,  the universal remote works as advertised and many streaming services can be cast from phone to TV with one click. Yay for (long hyped) working technology!

Doug listens to Xmas CDs while Young Timmmii and Clara are on the couch
This was the right call. We are more physically connected now that we have plenty of space to sit together with room for visiting friends. And we have a list of movies to watch as a family and as a couple. If you have recommendations of good classics we should watch with Clara, please sound off in the comments! We just showed her Repo Man, Donnie Darko, Rocky Horror Picture Show and IT The Second Chapter to give you an idea of the kind of content we are thinking about (edgy and thought/convo provoking).

Doug's mother's brother Frankie, his wife Judy, Rachel the wife of Doug's Dad Jerry


Kelly the wife of brother Deron, daughter Emilia, daughter Eloise and our Clara

This microsuede nest came in handy since we hosted three sets of Doug's family over Thanksgiving, and had a grand time doing it. His dad and brother were in town with their families, along with his Uncle Frankie and Aunt Judy, who are Cajun- born and bred in Baton Rouge. They brought pecans from their backyard for pies, and all kinds of seasonings to make a gumbo out of leftover turkey and Louisiana sausage. Doug said it was the best he had ever had- the roux was out of this world! Many laughs were had, and everyone helped us keep the holiday low stress by helping me pull it all together. I am so glad Doug had that time with his kin and that Clara had more chances to bond, too.

More good news: YES! There WILL be a Christmas CD mix again this year. For the past 16 years, Doug has been designing holiday music mixes and making marketing mailers out of them to send to all his real estate contacts, which includes so many folks in our friends and family sphere, too. Thanks to the big audio assistance of Tim Pratt and his super talented illustrator Robyn Adams, expect a new mix to come out soon! And if you want to get into the spirit NOW, here are links to all the mixes he has made over the years from his work website.

In summary: Things are getting darker, slower, quieter and more real. I am gearing up for it and so is Clara but again, trying to stay as present as we can while Doug can still crack jokes, share laughs and snuggle on the couch. He is so lucid in so many ways! But this is some serious fucking bullshit. I am doing as much yoga and pilates and power walks as possible to stay in shape for this wild ride because it requires so much fucking strength night and day.  Crying for me now happens 2-3 times daily and sometimes uncontrollably. If I really want to work out some of the sadness, I just listen to Luther Vandross on Spotify super loud in the Benz with all those speakers. Major downpour. Or get on a plane. I lost it in Heathrow. Ellie from Virgin on the LHR > SFO leg saved me with buckets of champagne in first class as she arranged seats for me and Doug together and made everything ok.

And I must close this post by repeating how deeply thankful we are for the tight orbit of companions, confidantes and counselors who are shepherding us through a time of fear and struggle. We know there is a light at the end of this fucked up tunnel, we do. May we get there in a less speedy fashion.


Thursday, October 24, 2019

The Ride Mellows Out, Praise Be

Hello friends and family!

Since Bunring Man, things have been incredibly busy with lots of travel and visits and yes, big life adventures so excited to push the latest update out to you. And it only covers half of it. Wow! On the flip, Doug has been really stable for the past month or so- which is why we are chasing the adventures pretty hard right now, while we can. #enjoyeveryday

Doug is currently at the height of his treatment. The radiation should have penetrated all his cells by now, and we have had one complete cycle of chemo with more on the way. Pill management is the most complex part of it, and we continue to tweak it to help keep him comfortable in any way possible. His memory is getting weaker, so we find ourselves repeating what is happening, where things are, when he needs to go to the doctor, etc. quite a bit.  He is still hilarious, cracking jokes when you least expect it, so laughter remains a big part of our lives.


A few important notes if you are visiting:

  • Please, please keep coming to the diligent and dedicated Catherine Lake to get on the schedule. Pinging me or Doug about it adds lots more steps to coordinate and increases chances by 1000% for fucking up the schedule. She can be reached through visit.klowntown@gmail.com   THANK YOU
  • And if you need to cancel, please let us know as soon as you can. It is totally cool to cancel, but no shows really throw us off and upsets Doug. 
  • I find myself in the middle of most social interactions with Doug, and it is drains me. Please don't be offended if I want to take off once (or even before) you arrive, or busy myself with tasks around the house when you are here.
  • And a reminder that if you have a cold or a cough or anything contagious, please don't come over till you are better.
Me, Anneke, Sean, Doug, childhood friends Keith Cobb & Ruthie seeing Led Zeppelin cover band on a boat

We all feel this is happening WAY TOO FAST so are purposefully jamming our schedule with fun activities while we can. We are working with Clara to make sure she understands that Doug is on a short timeline, a fact that hadn't really sunk in for her until last week. Our sadness is deepening, for sure. Thankfully, her school counselors have joined efforts with me to convince her to attend a grief group for teens, so looking to do that in the new year. She has been so engaged in her new school, just got the best report card of her life, and has a sweet boyfriend who brings her comfort and escape. Keeping her stable as she adjusts to all of this has been our #1 priority and lining up help for her is next.

NEW YORK CITY
But on to the fun stuff. We had an extremely magical time in NYC right after Burning Man. For years we had discussed taking our kids for a Manhattan adventure with the Lake family, and made fast decisions to just book it since I had a work trip scheduled there anyway. Thanks again to the Lakes for using Jetblue points to get Doug and Clara there! The weather was perfect, the leaves just about to turn, and three nights was the perfect bite-sized snack of a vacation cross country to the most electric city on the planet.


In Times Square on way to see the show 


Photos were forbidden, but....

My cousin Dolph Ramseur, who manages The Avett Brothers, graciously offered to hook us up with tickets to the new Moulin Rouge production on Broadway since he knows the team behind the scenes there. To see the show that made the words TRUTH BEAUTY FREEDOM and LOVE take on a whole new meaning for us couldn't have been more perfect.

All seven of us sat together five rows from the front, and we remained on the edge of our seats the entire time. As people filtered in, the performers (who are one helluva sexy bunch- MEOW), strolled slowly across the stage making direct, lingering eye contact with the audience. It really set the mood and we knew right away it was going to captivate us.

The best part for me happened when the curtains finally went up. Clara exclaimed in a serious, hushed tone, "Mom, I want to be up there." Now, I have always hoped she would find the performing arts as a calling, and am totally ready to click in to stage mom mode the minute she gives me the green light. Really hoping she evolves in that direction.

The show mesmerized us, and the singing and dancing was top notch by extremely accomplished actors. And they got the diversity memo; people of all shapes and ethnicities and orientations were up there on the stage. The set design was so sophisticated, too. I want to go again right away. Strongly recommended!

We got two big loft suites at The Ace Hotel, a fun and reasonably priced place to stay. It has a thumpin', lamp-lit lobby where freelancing hipsters and travelers hang out glued to their devices and serves up a tasty menu from The Breslin which is attached to it. The coffee from Stumptown Roasters also makes this place a hot destination. It's a hotel I have returned to many times over the years, so being there with family was easy and fun.

She's not too old to enjoy jumping on the hotel bed


Hanging with Clara in lobby of The Ace
We were able to sightsee in Central Park and also walk the Highline along the Hudson. We met up with Auntie Helga for drinks at The Standard- a super stylish hotel. Clara's friend Annie showed up to whisk her off on the subway to have adventures in Brooklyn, and all the kids shopped for new sneakers at the funky Vans store across the street.

Hellga, Doug, Guy, Catherine, Una, Me, Berch at The Standard

The four adults also had the dinner experience of a lifetime at Le CouCou. I first read about this place in The Cut (such a good culture site from New York magazine). A faux German heiress named Anna Delvey regularly held fancy dinners there and never paid her bill, which I found intriguing.  And it just got a Michelin star for 2020!



Guy, Doug and Catherine

If you want classically prepared French fare with a few surprise menu items thrown in, go here. But save your sheckles because it will cost you. It is the kind of place you don't really mind throwing down big bucks for because it is THAT GOOD. Like, shamelessly-lick-the-plates good.  Guy Lake and I had dined there before when we realized we were both randomly in NYC for business, and pledged to bring our spouses next time. We made friends with the sommelier, and I contacted him to tell him we were going to return for a special dinner with Doug. Yes, I play the cancer card whenever it seems like it might help and it typically does. He hooked us up by seating us next to the open kitchen and the "decanting station" for all the fine wines on offer so we were in the middle of the action. Guy and Catherine selected a Chardonnay from Meursault that blew our minds. Naturally, we ordered two bottles. And the service was better than what we experienced at Quince, which had held top ranking before we came here. We had a lady who kept the bread coming (to sop up the rich sauces), a man who kept the water glasses from ever reaching empty, the somm, and our head server, Ethan- who regaled us with stories of dining in Paris and made sure we made smart selections.

Doug fared quite well in the chaos that NYC can bring. The only thing that bugged him was getting jostled while walking on the crowded Highline - not easy to be there when you use a cane.

LAS VEGAS
The travels continue while we are in the up phase. This weekend, I am taking Doug to Las Vegas for a big party that our friend Polly Superstar is throwing. We are celebrating his 57th birthday there, and many other friends/klowns are flying in as well. We are staying at another favorite hotel, The NoMad, which is one of the places that really gives Las Vegas a level of luxury that makes it desirable to be there. We are excited to go the Tim Burton exhibit at The Neon Museum and maybe tour Red Rocks which is just a beautiful site to see.

Speaking of birthdays, Tim Pratt just celebrated his 50th and it was one for the ages. Doug had a toast he rehearsed to share insights into the evolution of Timmi's various alter egos, and as he approached the stage, the whole party spontaneously stood up and gave him a standing ovation. It was one of those moments that was at once deeply touching and wrenching. Just writing that brought me to tears. Woof. So, take a look at this hilarious photo below. It will make you smile. Ouchy and Helga Bunny had a shtick, 16 years ago (!!!), of playing music on schoolhouse record players at underground parties. I think this was the Odeon, or maybe CBGB's when Scott Beale had a big Laughing Squid party there in 2003.

Helga Bunny, aka Tim Pratt, and Ouchy the Clown "DJing" a party

Europa
Soon after we get back from Vegas, Doug will take a two week trip to London and Scotland with his besties, Camron Assadi (aka Teiwaz) and Timmmii. Yeah, i know- this is nonstop action.  They will join up with Yomi in London to go to the Guy Fawkes festival, then take an overnight train to Scotland to visit three cities there. This is a trip that has been in the works for over a year, and the doctors cleared him to go last week, so it is ON! Thanks to the brilliant recommendation of Neal Kaptain, I decided to fly over to London to meet up with them at the end of the trip, attend the Burning Man Decompression party there, and then fly back with him so he is not alone on that long flight, which was causing us all lots of concern.

Now, Clara turns Sweet 16 on November 1st (the day Doug flies to London so he will sadly miss it), so I have been diligently planning an extra exciting party for her packed with surprises. It will involve a dinner party at a cool restaurant, a white stretch limo (shhh she doesn't know about this),  homemade cake and roaming around First Friday in downtown Oakland with her friends. John Law just agreed to open up the Oakland Tribune clocktower for her friends to check out, which is something we did for Doug's bday a few years back. Really want to make it memorable and special for her for all the reasons you might expect. Our Nurse Jess Bobier will accompany me to pull this all off!

Ok, thanks for reading down this far. This is what happens when more than a month goes by without an update. People keep asking me how I am doing, and I still really don't know how to answer. "Up and down" is the most accurate response. I realize things are going to get a lot harder and darker soon, which is why I am packing the schedule so tightly right now.

As some of you know, I am writing this from a villa in Tulum, where I have taken my PR agency for a weeklong retreat. It is a major perk and a way to retain the great talented young ladies we employ and do some serious bonding. I conducted a personality test here, and we used StrengthsFinders to do it after getting the same recommendation from many others. One of my strengths is "Adaptability" - described as someone who "...has a gift for reacting in the moment rather than delaying action. Someone for whom the present — not the future or the past — is most important." Pretty accurate. My therapist says to let the emotions that well up flow right through me, so I find myself sobbing in the bagel shop, driving across the Bay Bridge, and on planes, especially. I totally lost it on the way out here, feeling guilty for leaving my family once I had "private" time to think all the thoughts. The tears streamed down and I was shaking with the silent sobs. The nice couple next to me was quite respectful, and when I finally came out of it, they bought me a Modelo and we had a nice chat. Oh, life!


All I do know is that I am going to need to lean on many of you a lot harder for support, and I remain deeply thankful that I can even write that statement with confidence, knowing I have an army of friends at the ready.








Tuesday, September 24, 2019

Dust, Love and Pills

With Marian, BM CEO and Yomi, our long time friend.
She loved the BM sticker Ouchy gave out to people there.
Dear Friends and Fambly-
Very sorry to take forever to update the blog. So many things have been keeping us busy, hardly had a time to sit and think.

But first of all, wanted to say that BURNING MAN WAS AWESOME! It was definitely the right call to make the trip, and Doug never got too tired or overstimulated so it worked out quite well in every way. Deepest, never ending gratitude to Harley Dubois and Marian Goodell, two of the organizers of the event whom Doug and I have known and worked with since the late 90s. Those two ladies made  it really easy for both of us to fully participate this year.


Doug outside our RV at First Camp 
We were able to do our talk about the early days, and go to The Office for its Quinceanera, and watch The Folly burn after visiting it during the daytime.


Our talk about the formation of the Greeters and Media Mecca at The Mansonian Institute (thx, Anna!)

And yes, we marched with a whole group of friends to The Temple, took a selfie and then Doug said "I'm not dead yet" mimicking the tiny voice in the Monty Python skit- so we scooted outta there.

Most gorgeously designed Temple ever and our crew


With Harley, one of the founders, before the Larry Temple burned

Best of all, we were able to cry really hard together. We have really not been looking much around the corner, but as we were both putting on our clown makeup, it hit us that this could be the last time doing so at Burning Man. It has become a ritual for us with lots of meaning as we transformed into silly characters that helped define us for the past 20 years. We held each other, heaving with sobs, and then got our shit together to get out to the talk in clown outfits and made it just in time.
And those cries were worth all the hassle of the trip and then some.

With Bob and Anna at The Spa at Lake Lahontan, the bar Catie Magee created for Golden Guy Alley

On Friday pre-burn, our friend Amani drove Doug off the playa for a relaxing night in a penthouse suite at The Peppermill, and I had the extreme pleasure of staying another four days to frolic and provoke and cackle till way past sunrise, mostly ending up at Robot Heart frightening the high end ravers.

Yomi as SantaKlown and iKandi the Klown causing trouble at Robot Heart

Walking around the embers after The Temple fell to the ground, with Glenn Campbell as my bodyguard to keep me from melting in the extreme heat, was a very moving moment.

So, lots of therapy was had out there and tons of love received. I am so thankful we have this event in our lives; it is not as frivolous as some may believe.


Glenn, who I stumbled upon in 1998 out there and who we've befriended ever since

Doug's Condition
After returning, Doug wanted to come off steroids, and that was a mistake. It threw off his memory and mobility and caused headaches, so he is back on. He also started back on the chemo pill yesterday- and has one week on, three weeks off, and can go through that for 6-12 rounds.

He is able to do light housework, and enjoys watching TV with Clara. She is helping to get breakfast on the table for him, and doing more chores, too. And Clara LOVES her new high school and says it is the best school she has ever attended. She continues to really bloom through all this, and seems focused on her studies in a whole new way, too.

Later this week, we are taking a spontaneous trip to NYC with Catherine, Guy, Una and Berch Lake- another family who has been super close to us throughout all this bullshit. For years, we have talked about taking the kids to Manhattan to explore together, and finally we are. Our cousin Dolph Ramseur, who manages The Avett Brothers band, hooked us up with comp tickets to see Moulin Rouge which recently opened on Broadway- so we are all going to catch that show. And the next night, the four adults are going to have a perfect dining experience at Le CouCou- where Guy Lake and I had dinner a few months ago. This is the kind of place where you should NOT lick the plates, but are tempted to do it anyway. Watch for the trip report soon.

The therapists are starting to suggest that we begin to plan Doug's funeral while he is still super lucid, so we are going deep into bigger questions about his preferences for how to spend his final days and how to celebrate. It is a hard topic, and will take a while to form it all up, but we are encouraged to stare at this in the face and just do it, scary though it all is.

We are amazed at the love and support that continues to pour in, and have had almost 7 weeks of weekend visitors. We need to slow it down, focus on Clara transitioning into a new school and get a grip on additional therapies. Thanks for the patience to come visit, and we appreciate all the signs you all are sending to keep us lifted up in so many ways.