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.


Sunday, August 25, 2019

We R Going to Bunring Man!



First year Doug made us custom clown outfits, BM 2000
photo by Glenn Campbell

Hard to believe but yes, we are actually going to make it to the dust this year!
Before all this bullshit happened, Doug had hoped we could go together this year, since he went with a harem of ladies last year and I was with Peter and friends the year prior.



The year we did Klown Town, 2001
Photo by Jon Ross
This was going to be our year. And it still will be. We were falling in love at the 1998 burn, and have nurtured and exhibited so much of our connection to each other in nearly every year since. The place is super sentimental and where so many of our closest companions are, and NOT going because of this cancer fuckery was going to forcefully suck. Words alone can't quite express how exuberant we are about the ability to have this time together out there.


"That Guy" the Klown and iKandi the Klown, BM 2014
Photo by I have no idea
Plus, Harley, one of the organizers of the BM, had asked both of us months ago to do some storytelling at one of the camps out there, to talk about the "days of yore". We had even had conference calls rehearsing some of the tales about the formation of the Greeters, which Doug was involved with from the start, and Media Mecca, which I helped organize in 1997 with Marian and many others.

Delighted to report that Doug's treatment has worked so well that the decision for us, and with the counsel of our doctors, is to FUCKING JUST GO!

Therefore, if any of you are out there- please come hear our talk! The details:

Camp: The Mansonian Institute
Time: 4:00pm-5:00pm
Date: Wednesday, August 28th
Addy: The corner of 6:30 and Diana (look behind the murals in the front)

There will be shade and a happy hour! Harley is moderating it and is one other talk, too. We are thankful to even have had rehearsal time with the famed Dixie de la Tour today to really prep. And Andie Grace also helped us think through our tales when she came to record a session with us a few weeks ago (to play in case we could not make it).

But we are going!

Will stay for a few days and see how Doug feels and likely get out of there early.

Watch for a report on how that experience went. It is sure to be super romantic, dramatic, spiritual and cathartic.

Monday, August 19, 2019

Truth, Beauty, Freedom and Love



It’s interesting how sharply into focus the really important life stuff becomes. Truth is what we strive for in most interactions. Commitment, another form of truth, at a time when everything else is wobbly is extremely valuable to us (so if you are visiting, please try to be on time).  Beauty brings joy, so surrounding ourselves with fresh flowers, Doug’s mom’s antique sterling tea set, lit candles day and night and cute cats tends to set the right stage for being in the house a lot of the time. The Freedom that comes with living in the present and not worrying much at all about the future really is starting to happen and really helps strip out some of the crazy. And Love surrounds us constantly and all the friends and family continue to really buoy us. People are demonstrating how much they care in the most amazing ways and we are forever grateful.

These are the four tenets that take the spotlight in the Moulin Rouge film by Baz Luhrmann. When Doug and I went to see it 18 years ago, I remember these words flashing up in large letters and taking up the whole screen right at the end. I stood up and squealed the words along with the crazed characters and the full meaning of them hit me hard just then. It was a perfectly exciting denouement to a psychedelic movie about the infamous, decadent nightclub in Paris. Taken together, what more pure way to live life? So, it's obvious to reference these words, and think back to that time plus the passion we shared- especially knowing we are living with the clock incessantly going off in the background. (Yes, Doug’s various antique clocks are still bonging at slightly varied intervals in the living room.)

That movie is worth a re-watch (even Nicole Kidman is amusing and hella sexy) and if the closing scene hits you like it hit me, please call and let’s talk about it. 



Doug joins in on The Office build party pre-playa

This is a massively delayed yet really good update! 

It’s wild. The radiation + chemo pill cocktail really has TOTALLY WORKED to reduce that damn tumor. In the past week, Doug has:
  • started texting people again on his phone (thank you voice-to text-tech)
  • cooked up breakfast for the family 
  • made a rich short rib sugo in his brand new Instapot (handily using the Google Home Hub to give him step-by-step recipe directions)
  • jumped in the pool to swim laps for exercise
  • attended his business cult networking breakfast meeting to say Hi to everyone
  • helped drill The Office together to be shipped out to the playa AND AND AND
  • closed two deals for his buyers, including a legendary place that his best man and old friend Scout just sold

(NB: Doug’s real estate firm Highland Partners is really helping us out. The founders, Heidi Marchesotti and Adam Betta, are continuing to rep him so PLEASE send any leads for buyers or sellers in the East Bay our way. It can make a big difference for us financially.)



Doug and best man Scout after signing all the papers for Graceland
Doug is down to his last week of radiation- so expecting his abilities to improve even more! Yes, he is taking deep naps and that rest is important, but he is cruising right along with more independence and certitude since all this shit happened.

Interestingly, the docs say the effects of radiation aren’t truly known till two months AFTER it ends, so really thinking Doug will just keep getting better for a while. And that is super exciting! We are planning fun trips because the psych we are seeing at UCSF says to just start building memories NOW and we are taking that advice full-fucking-stop. 

We have had lots of weekend visitors which keeps Doug engaged and serves to be really helpful for me. The visit from one of Doug’s oldest college friends Cindy was so touching to them both. Having the time to talk and laugh and recall good times from ages past has really lifted everyone up and Clara likes hearing tales of yore about her Dad, too. Just yesterday Robbie Parrish- another college friend- was in town from D.C. and we spent seriously quality time on the deck, watching all the bees and hummingbirds and sharing stories. And Yomi comes tonight! This is something like his 15th visit from London en route to Burning Man. It is a ritual we all anticipate and he has become a family member because of it.

Speaking of Clara, she has started a new school- a charter called Millennium that is attached to the Piedmont High School campus and shares its curriculum & programming. Fingers crossed that this place gets her/and vice versa and she takes more of an interest in academic life. So far, she isn’t complaining and said nice things about her teachers so i take that to be an incredibly good sign! Also, the administration is being extremely sensitive and accommodating, even allowing her to skip the first two periods to spend morning time with Doug- which is sacred, quiet time together. We are seeking tutors that could ideally pick her up from school around 3:30pm and drive her home (10 mins) for an hour of structured homework time, 3 times per week. We have a few feelers out, but if anyone knows someone who is patient and kind and digs teenagers, please let me know and will pay them more than they would normally get with such a gig. Overall, she is busy with friends, and a new boyfriend!! who seems really sweet to her at an important time. We check in and hang out quite a bit these days with lots of pets and hugs and snuggles, to that all feels really, really good and well balanced given the grave situation.

Clara & Mr. Benson on first day of 10th grade at new school


Now that we are in the swing of a schedule, a few tips to make visits easier are worth mentioning:
- Thank you for sending an email to visit.klowntown@gmail.com to get scheduled. Catherine Lake continues to rock this so hard for us (NOT a simple task), so thanks for being patient with her, too.
- I am back to work in SF at Mighty on Tues/Thurs and WFH on Wednesdays. Trying to not work to be with Doug and Clara on Monday/Friday. 
- We have hired on in-home aides for when we need it, too so that is super great and a big fat relief.
- It’s totally cool to text Doug! He is really getting the hang of his new Pixel phone and doing lots of voice-to-texting so if you wanna reach out, please do. Email, not so much.
- On the flip side, if either of us are not texting/emailing/calling you back in 48 hours or so for something that deserves a response, **do not be afraid** to hit us up again. That shit actually helps keep us on track.
- Please take a moment to say Hi to Clara and engage her lightly if she seems in the mood. She is in her room a lot, and I can help facilitate these interactions, but its easy for her to get a bit shuffled and hanging/chatting with her will help normalize some of this.
- Seeing either of us stare off into the distance with an empty gaze or sit their with tears welling in our eyes in the middle of conversation can happen so just go with it and join in on the crazy emotion train. We are trying to feel our feelings more than normal.
- If you come over, extremely helpful to just go ahead and make yourself a glass of water/beer/wine/coffee and then empty the damn trash or the dishwasher or fold the ever present pile of laundry on our bed or take out the recycling- don’t need to ask me- can always use the help with mini-tasks like that because it never fucking stops.
- #RealTalk Yes, I am having a really difficult time turning off my deeply instilled Southern proclivity for instantly being in hostess mode when people come over. It’s insincere some of the time (not all the time, tho) so trying to get a grip on that. So, if I disappear when you come over its because I have 1,000 other things I can attend to while you visit with Doug AND I’ll skip the cycle of small talk, etc.

Hope to have more treatment related updates next time around. 

Thanks for reading this long-ass update and will do another one sooner promise mean it

Dashing with the silver tipped toad cane- Thx, DD!

Thursday, August 1, 2019

Playing Hooky & Visitation Situation


                                                                  Sunset at Nick's Cove

One of the biggest upsides of this whole thing is how deeply we are connecting with each other, and our close friends. Even strangers! For example, Clara just came home last night all lit up because she confessed to her Lyft driver a bit about all the drama of having a Dad with a terminal brain tumor, and he opened up to her to share some of his own tales and to give her encouragement. She was open to it and it touched her. That is the kind of interaction that sustains us.

Speaking of Lyft, that reminds me of all the apps powering this cancer crisis. Figured you tech folks might find this of interest.

Top 5 Apps for Dealing with This Crazy Ass Brain Tumor Situation

1) Lyft- this app moves Clara around to the places she needs to be since I can rarely drive her. And helps me escape, disappear, bolt and return when driving isn't a smart thing to do.

2) Slack- I use this across clients at work, but WOW this tool is also hella efficient for crisis comms, too. It helps us organize all manner of activities amongst a coterie of deeply caring and committed friends. We have nurses, attorneys, therapists, chefs, Aunties, musicians. They all chime in to help me make decisions muy rapido and nearly any kind of task is deftly handled by this willing crew. We even have a Slack exec in the group marveling at this use case. I, of course, just want to pitch the story, but...

3) Grubhub- we have gotten lots of coupons sent our way for meal delivery, which is really also quite helpful since I do not cook for shit. Doug has always been the house chef, and I the dishwasher- a clean 50/50 arrangement. As Camron can attest, if I try to make something simple as rice, it gets burned. So, this service has been popular. Many thanks to so many of you who have sent this to us.

4) Spotify- Music has filled the rooms because it really puts Doug in a great mood and stimulates many golden memories. In fact, friend Timmmii put together a collaborative playlist where folks can upload tunes that Doug might like. It is HUGE now and packed with some gems. Find it here and have at it. Another really crazy great play list is the one that Guy created - lots of surprises here and more abstract.

5) Amazon- I have held out and not joined this megastore until now. Doug was the problem shopper on this site, never me. Now, I see how valuable it is when you are housebound and need stuff fast but still a reluctant user for all the reasons.

(And no, Eaze doesn't make the list because many beautiful people keep bringing me some strong shit- Chem Dawg and Blue Dream. So, not using this service as often as one might assume.)

Playing hooky recently turned out to be the right call. Actually, my give-a-shit meter for rules of any kind these day is sorta low. And some red hot anger is popping up in the weirdest of places. I had a shouting match and staring contest with a homeless man who was harassing the clerk in a store in the Mission the other day. He called me a "white bitch" and said he would spit on me if I kept yelling. I acknowledged that yes, I am a "white bitch" but he was being really rude and also interrupting the business I was trying to conduct there. Fully irrational move on my part, and could have gotten ugly. So, I am trying not to go out very much in the Big Public anytime soon.

Anyway- back to the tale of the romantic if profligate getaway! Many people know that I love a nice hotel room, and often pack Xmas lights, candles, bottles of vintage Schramsberg, and the Bose when traveling to trick the space out. It seemed only right that Doug and I should steal away and just fucking skip one day of radiation, early in the cycle of treatment, while we could still enjoy that kind of time together. We booked an overly luxe cottage at Nick's Cove in Marshall, ordered in their delicious fare, and basically napped and watched the tide come in and out. It was blissful. Oh! And sat in the giant clawfoot tubs filled with perfumed water from the CBD bath bombs we got at Harborside. Two days quickly turned into three. We had the chance to really talk about some very tough topics, to think a bit about the near future and to just not be bothered by nurses and Kaiser appointments and email so that we could just relax together, un-interrupted. It feels like our days are chopped up into 15 minute increments with med schedules, meals, phone calls, visits, etc. so that kind of elongated time together was a tonic.

And thank you to Catherine for being the scheduling ninja! It is not an easy job, especially amongst close peeps who are not used to being told nothing. If you want to visit, please send an email to visit.klowntown@gmail.com - and we will get to you as soon as makes sense. There do seem to be a lot of guidelines, but that is how it has to be for now. We have 2-3 visitors most days, and that is on top of other appointments and people coming to the house for this thing or that. Sometimes that is just waaaay too much and we need quiet, family time. But mostly we enjoy this kind of stimulation and companionship.  We are starting to limit the time people visit as Doug gets more tired. And yes, radiation and chemo are going well- and his mobility is improving. The hair is starting to fall out. And he is getting more tired yet still quite lucid. We are packing it in because these visits and ensuing conversations are rich and thoughtful and nourishing as much as that Chicken Matzoh Ball Soup that a realtor friend brought over recently. I mean, how often do you have someone serenade you with a ukelele? Especially when it is someone named Chicken John.






Sunday, July 28, 2019

Ritual

Hey there folks- so much is always happening, so a bit behind posting here. And if you are joining us because you saw my posting on Facebook, thanks for jumping on this f'd up ride. This is the right place to get updates on how Doug is faring (and please read the Original Post that was sent via email below on the full story for how we got here).

Tomorrow, we are heading into week three of radiation/chemo and so far, Doug is doing quite well. He even seems to have more energy and is getting around the house sans cane. Mentally, he struggles to understand how he got to this place, why he needs someone to give him baths, and help him get dressed, etc. But he is also able to enjoy the visits with friends and family without falling into a dark hole. I've been duly warned by many that there will be good days and bad days, so expecting things to change with increased fatigue that comes with the treatments, and the hair loss, and who knows what else. Thankfully, he only experienced extreme nausea on the first night of treatment, and we switched meds so that he has had really easy rest ever since.

                                          Doug & his brother Deron out on the deck as the sun also sets

In all truth, we are gonna play hooky from radiation tomorrow. Instead, I am whisking Doug away to one of our favorite places to find tranquility- and that is Marshall, CA. There are many sweet little cottages perched right on Tomales Bay, so you can feel the tides go in and out. We are going there tonight, just the two of us, to enjoy the splendid array of waterlife on the Bay and sit quietly with each other watching the fog spill over the hills on the Inverness side. Also: OYSTERS!  He is quite excited to get away and maybe forget some of this.

And yesterday, we were blessed with a Mohican healing ceremony. One of Doug's colleagues does this frequently, and asked if we would be willing to do this in our house. We invited some close friends, and Deron and Clara were here to participate as well. The ceremony involved earth from our garden, some special tea we all drank, drums and Indian chants and lots of tears. It was intimate and opened us all up to the possibility of the spirit healing the body. The energy shifted dramatically after the ceremony concluded, and we fully believe this kind of ritual has many powers to heal.

                                                    Doug receiving a "rattling" around his body

It cannot be repeated often enough that the level of support from friends and family is making this crazy ride so much more tolerable than it should be. We are creating new rituals to celebrate the times we have together, and the love and warmth that surround us is palpable and sustaining. Thank you all over and over again.



++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

  (This was sent via email on July 7)
Friends-
Coming to you with shitty news, so sit down.

Maybe grab a glass of bourbon on ice. This won't be coated in sugar.

Ok.

Franklin Douglas Fuller has been diagnosed with a high-grade glioma, which is a malignant brain tumor. When the doctor met with us, he said the situation is "grave" - so that is the way we are thinking about it. 

He has been in and out of ICU and the hospital for the past 10 days with a few complications and ER visits along the way.

We hope he comes home tomorrow. Yes, this all happened quite suddenly.

I am starting a blog to post weekly updates to minimize the messaging back and forth on this. See it here: https://www.mrtoadwildride.com/

Three ways to help:
You can schedule a visit here (but if we need to make changes, please understand): https://docs.google.com/spreadsheets/u/1/d/1fgzQzErIDDiGoNcfDivrU5vgDfIczUr5f8WeYWNCJfs/htmlview

If you want to bring over food, and possibly eat with us (but also be willing to deliver it to doorstep), we have set this thing up: https://www.mealtrain.com/trains/v9l3z8


As for treatment, we are looking at starting a standard 6 week run of daily radiation therapy at Kaiser Oakland this week combined with a chemo pill that he can take at home. And tons of cannabis for me and him.

The Background on this FU'd Situation

Only 6 weeks ago, Doug noticed he was missing the exit when driving home and mixing up words and letters. He got an MRI and they instantly found a "dark shadow" on his brain. He went for lots more MRIs, a spinal tap, blood work of all kinds, etc and nothing was conclusive. So, they scheduled a brain biopsy to happen last Friday.

Right before he went in for surgery, his brain started to bleed. That caused lots of pressure to build up, and for his motor functions to be impacted. Short-term memory was affected, he couldn't remember how to put on his shoes, and his right side vision was impaired.

We got ambulanced to Kaiser to be monitored ahead of the biopsy. They conducted the surgery and when the results came back, the tumor was confirmed as malignant and aggressive.

Next week, we agreed to start a 6 week trial of daily radiation therapy + chemo pills he can take at home.

Today, friends cleaned out the computer room top to bottom so we can convert it into a recovery room for Doug.

The best news is that he is still his same, sparkling, hilarious self eager to crack jokes and laugh. He can also take himself to the bathroom and feed himself, too. We think he can walk with a cane, but stairs are a problem. I don't think he will be able to drive again. Reading and writing aren't happening. So, his days as a real estate agent are likely coming to a close.

Clara and I are extremely lucky to have a deep and wide support network of friends and family all around us. People have mobilized to help us with so many things, from researching remedies and coping resources (I am staying away from the dark rat holes on Google) to bringing meals over to going on walks and hikes and to yoga which is so tremendously helpful.

Clara has been a trooper, and is even trying to soothe me. She is super strong and connected to us both and feeling all the emotions. We are seeking counseling for her during this time. Doug and I have counselors already.

Here is an FAQ to help with some of the questions likely swirling in your head. And it's ok to forward this to people who may want to know in case I miss someone.

++++++++++++++++++++++++++++
Doug FAQ
July 7, 2019

What the hell?
Yeah, exactly.

How can I help?
Read this first. It's a bit finger-waggy, but an eye-opening chart that will allow us to connect in a stronger/healthier way around this fucked up situation. This right here is the number one question people like me receive, often many times daily. And it's natural to go there. But, it's tremendously hard to quickly answer and forces me to think on my feet- so trying to post lots of info here. We are extremely #blessed to have a sturdy crew of close peeps assisting in many ways already, but they will need to cycle out at some point.

Ok, cool but I really want and NEED to help!
Of course we can totally use your support in some way or another. And come visit. IRL is the best, but sometimes hard to balance and schedule so just be patient and promise we will make it happen. I want anyone who wants to see him have a chance to get over here.

And how is Clara doing?
She is maturing through this and really bonding with me in a whole new way. And she is sad and scared. Most of you know of the many challenges we have had and the beauty of this situation is how we are showing up so well for each other and connecting. She has lots of friends who provide safe havens for her to retreat and relax, too. She is in summer school for 2-3 hours each day so she has structured time there. And she has many Aunties who are checking in and making sure she has what she needs, as well.

How are you doing?
I have about 4 emotions at once most hours of the day. I love soothing Doug and feeding him and holding hands with him and Clara on his bed. However, staring at the wall is a treat. I've enjoyed using my comms skills to keep the first wave of folks informed and delighted to fucking finally get this note out to more people now that we have real, hard facts to share. I am alternately sad but soaring on adrenaline and sometimes manically busy juggling the mountain of stuff that a fast life change like this requires. Not thinking of the future much so I can be as present as possible. My work peeps have my back in an amazing way, so I will work part time for now.

What is your social media strategy?
Thanks for asking. Purposely staying WAY FAR AWAY from Facebook with this topic for 1,000 reasons. Realize I cannot control what people do out there, but would really appreciate it if folks didn't "vaguebook" about this. Prefer to use email and word of mouth and phone calls and in person experiences to handle this shitty situation. Thanks for the sensitivity.

Are you getting a second opinion?
Absolutely, we are. I have been severely focused on getting paperwork in place to make this happen on Kaiser's dime.

Can you move to UCSF?
Tons of people are pointing in that direction, and we've got 4-5 really strong connections on the inside from the Board level on down who can be called on if we think that is a better route. Unclear.

Can I call Doug on the phone?
Well, he cannot really work his mobile, so you can text me to get to him for a phone conversation.

How long is he going to be with us?
Doctor says maybe 18 months. Miracles do happen. Quality of life is more important to us than chasing an elusive "cure".

So, you aren't gonna pray for him to live forever?
NO HELL NO. Doug and I have talked about this quite a bit. He has lived a very colorful and full life- done MOST things TWICE- and has no looming regrets about bullshit bucket list items. As Teddy Rheingold so sagely said "Life is the Bucket" . Making sure he is having quality time in a comfortable fashion and in his own unique style is what we are focused on the most.

What is making Doug more comfortable right now?
Bad jokes are another form of medicine, because laughter always erupts. Seeing friends, getting foot rubs, and listening to jazz has been really soothing for him.

Will you try cannabis to help with this?
Hell yes. We got doctor's approval to go ahead and try THC & CBD treatments in parallel. We are lucky to be connected to the notable dispensary Harborside and they are going to recommend certain blends that will help with just this kind of cancer- especially with the nausea that comes with radiation.

Thanks for taking all this in, and for the love and concern and care for us as we move through this Wild Ride. Again, watch the blog for updates and understand if I cannot respond to emails/texts as we figure all this out.

Love-
Candace




Monday, July 15, 2019

The next phase: Gamma Rays






                                                   ( ^^ showed up on our front doorstep, courtesy of Robyn, 
                                                     the talented illustrator who helps Doug design his holiday CDs)


Today, Doug got his first radiation treatment. It is a very space age situation. Lasts 7 mins or so. And the side effects are cumulative so he felt ok coming out of it today. He will do this daily, M-F, for 6 weeks and then it should stop.

Tonight, he takes his first chemo pill. We are gripping for the nausea that typically ensues. The chemo pill is daily and could be administered longer than radiation. Both treatments are meant to shrink the tumour, and hopefully improve his vision, motor coordination, and short term memory. We will see!

In all the sadness and trauma associated with a major life shift like this, I am delighted to report that there are MANY silver linings.

  • Enhanced family bonding time. Clara is a CHAMP!
  • Magical, intimate moments with a panoply of visitors
  • Lots of real talk beyond just this cancer bullshit
  • The chance to slow life waaay down to Doug speed, i.e, he noticed a peregrine falcon swooping through the canyon off our deck for first time whilst gazing off in the distance
  • A renewed mission to try and #enjoyeveryday (thanks again, Teddy)
We are totally buffered by our community, which makes it even possible to recognize those silver linings. Just the other day, Doug had one dude and many special ladies surrounding him to help with various things, including a fresh shave.  These are moments to cherish, and we do. Thank you over and over, dear friends. It helps make this situation a lot more bearable and we are extremely grateful. More to come....