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.