Dearest friends,

This may be the hardest thing I’ll ever write, and I know no way to soften it. Dan passed away Friday evening. He was very quiet and comfortable, and was surrounded by family and friends.

Dan passed away with the same level of intention with which he had lived his life. He didn’t want this phase of his illness to last long, and so he made sure it didn’t. Once his final decline began, it proceeded swiftly. He bore it all with strength and grace to the end. As his ability to care for himself faded away, he allowed us to care for him, helped us as much as he could, and in his own way he made sure that we knew he appreciated our help. Although he slept most of the time from Tuesday onward, he was still present. He lit up every time Dillon entered the room, and graced us with the occasional smile, wink, wave, or well-timed eyebrow raise. He couldn’t speak much toward the end, and even swallowing was sometimes a significant effort, but he let us know every chance he could that he was still there with us.  He enjoyed visiting with people, and liked to sit upright and listen to the conversations around him.

He was very excited that his good friend Steve made the drive down from Willits to be with him. The last time they had seen each other was when Dan went to Willits for Thanksgiving with Dillon, Mary (Ma), Jimmy, and Dillon’s friend Alexa. While he was in Willits for Thanksgiving, Dan asked Robin if she would come down and be with him at the end, and he was grateful to have her there. It was a huge comfort to all of us that Dan was in no pain for the last week. Although moving or being moved was uncomfortable for him near the end, the discomfort didn’t last long. He was quickly soothed with loving, reassuring words, gentle hand holding, and head stroking. He slept long and well, ate his favorite ice cream, and listened patiently as we talked his ear off.

We are immensely comforted by the love coming to us from all directions. And rest assured that Dan felt the same love from you that we are feeling now. I know he drew the same comfort from it. When I was looking for something on his computer the other day, I found a document titled “my thoughts.” When I opened it up, I found this quote from author Jana Richman: “But fear of death has never been my problem. To me, life, not death, holds the promise of misery. When life is lived as a problem to be solved, death offers the ultimate resolution, the release of all fears, and a moment of pure peace.” I, and anyone who knew him, knew that Dan did not see life as a source of misery or a problem to be solved. I remember the day we found this quote, and what it meant to him was simply this: that he had no fear of death, and that with it, he would be released from the various physical pains of the last two years.

This process, from the very first signs of Dan’s symptoms two months before his diagnosis, has been an exercise in raw humanity. And this exercise, this journey, continues. We are surrounded by friends, and blessed by the experience of knowing and loving Dan, and are grateful for the opportunity to carry his spirit forward. He lives on, within and through us.

Dan did not want a formal memorial service or any sort of ceremony. So to honor and celebrate this remarkable man, we are throwing a party in the Donovan style at the home of our lovely friends Deb and Dave this Saturday, December 22, starting at 2 p.m. Their address is 1820 Derby Street in Berkeley, CA, 94703. We will likely go into the evening, and if the weather is nice enough, I’m sure there will be a fire in the backyard. We are also planning to have a celebration on Dan’s birthday, May 1.

This Saturday we will be sharing photos and memories to compile in an album. Please bring any photos you’d like to share. Also, we will provide materials for and invite people to compose notes, letters, poems, telegrams, drawings, or whatever they’d like, to Dan. We’ll take these missives to next year’s Burning Man and place them at the Temple, a sanctuary long at the center of Dan’s spirituality, and one of his favorite places on Earth.

Dan was filled with love and gratitude for his friends, who brought him so much joy. He would have been happy to hear our house filled with as much loving conversation and laughter as it has been in the last couple of days. Even in your sadness, remember that the best way to honor Dan is to laugh, enjoy life, bring that joy to others, and above all, be yourself.

For those of you who sent checks to help cover Dan’s health insurance deductible, we will not be cashing them. For those of you who sent money through PayPal, with your kind permission we will gratefully use that money to help pay for Dan’s cremation. From the bottom of my heart, thank you for all the love, well-wishes, good vibes, and support in all its myriad forms.

Bon voyage, Captain. I can’t wait to hear about all your adventures when I see you again.

Love and gratitude,

Kaki (with my trusty literary partner in scribe, Calum)

My dear friends,

As many of you know, Dan had a scan in late November to see how his treatment was going. The results showed that the chemo has stopped working, and the cancer continues to grow and spread. While the scan showed some new spots in his bones, the main concern is the significant amount of cancer in his liver. His doctors were surprised that he hasn’t gone into liver failure already, given the extent of the damage. As it stands, that could happen at any time. The good news in all this is that liver failure is a relatively peaceful way to go.

Dan is in good spirits, although he is sleeping more and eating less.  He still gets out of the house when he can, but usually only for very short periods. He tires out easily, and recovery is slow. His pain has been increasing, and we’ve been ramping up his medication in response, which often leaves him drowsy. He has been put on hospice service, and they are giving us incredible care. Today, in fact, they delivered and installed a hospital bed in the living room. Dan’s sleeping in it now – his favorite couch served him well through this whole ordeal, but it’s time to upgrade. This new bed’s a freakin’ Cadillac: adjustable in every direction, cushioned air suspension, chrome detailing, you name it. Only the best for our Captain.

So I guess this is a long way of saying that we’ve entered a new phase in this fight. Dan is seeing people, when he’s awake enough, but there’s no telling from day to day, or even hour to hour, when that will be. He’s not been up for checking his phone or email much lately either, but I read his text messages and pass them on to him. If you want to visit, please call or text first, and please wait for the go-ahead before coming by. There’s no guarantee when or if he’ll be up for it, but you’re welcome to ask. And per Dan’s wishes, please keep all information about his health off of Facebook.

I know Dan appreciates the love and support you all have shown him during this journey, and he would thank each and every one of you if he could. So I’d like to thank you on his behalf. And on mine – I couldn’t do this without you. All the love we’ve received, and continue to receive, is astounding. It is the rock that we’ve stood on for all these many months. Thank you.

Godspeed,

Kaki

I have learned that cancer has many setbacks and negative aspects associated with it. The list is quite long and at times seems to have no end. But it also possesses a couple of, shall we say,”get out of jail free cards”, otherwise known as “pulling the cancer card.” So I’m just letting everyone know thats what I’m doing right now. I know it’s been a long time since I’ve updated this blog, but get off my back, i have effing cancer.

It’s now October 26th, in the year of someone’s lord. All kidding aside, since my last update my weight had slipped back down to 117 pounds as a consequence of the chemo that I was on becoming ineffective. The chemo seemed to be working until the second week of August, when a scan showed that my tumors were no longer shrinking. My liver tumor’s size was stable at best, and the scans showed new tumors in my lungs.

Despite this, I still had enough energy to make the trip out to Burning Man. Up until Burning Man, I had only been out of the house on two occasions for a total of three nights. With our early entry passes, we spent 10 days out there in the desert. It was the most normal I had felt in a long, long, time. The trip out there was made even more special by the fact that it was Dillon’s first time going, which invigorated me all the more. He fit right in, and I think that considering everything that’s gone on the last couple of years, it was a great break for us from the illness, emotionally, spiritually, and physically. As I’ve mentioned before, I’ve given away snow cones for many years at Burning Man. It was great to be able to repeat this tradition, and we spent many wonderful afternoons serving cones to thirsty Burners. We ended  up giving away over 1,000. This total can be verified by our paper cup count in case anyone has their doubts.

On the medical front, I had to have my chemo port removed from my clavicle after returning from the playa because it was interfering with my blood flow and causing clots.

My energy level had felt completely and totally normal while I was out there on the playa. This prompted us to plan a trip to Boston with Dillon, Kaki, and my mother three weeks after I got back from Burning Man, which set a series of problems into motion. One of which was that I had already been three weeks without chemo after Burning Man, but had not yet received authorization from the insurance company for the new chemo regimen. This was  denied, to our surprise, since the chemo was approved for breast cancer, not pancreatic cancer. After several failed attempts to get them to approve it, and facing the prospect of over a month with no chemo at all,I convinced my oncologist to give me my old chemo formula the morning of my trip to Boston. And, true to Murphy’s Law, the new chemo was approved an hour before my flight took off.

The old chemo proved ineffective in combatting my pain, so my trip to Boston was both wonderful and extremely painful. We brought a wheelchair, forgetting that the sidewalks and cobblestoned streets of Boston are some of the bumpiest and pot-holiest in the country. Highlights of the trip were obviously getting to see a lot of old friends I haven’t seen in a long time. I especially want to thank one of my oldest and dearest friends, Cindy Walsh, who generously put us up at the W Hotel downtown for 5 nights.

This was a preamble to the two nights we spent at the family beach house of another, more recent friend, Christine Troy, in Wellfleet on Cape Cod. The house was beautiful, and it was a dream come true for my mother – Cape Cod is one of her favorite places in the world. I had to practicaly drag her back to the city. In Provincetown, at the far end of the Cape, we were joined by one of my closest and oldest friends, Bobby Mac. After Bobby left, Kaki, Dillon, my mother and I had one of our most special moments watching the sun set as we sat on the beach there. I dropped my mother off in Boston to meet her husband Al so they could join the moving truck on its way to Florida, their new home  (It should be noted that my mother is already preparing to experience her first hurricane). It was nice to see Al, since I hadn’t seen him in four years. My mother usually comes out to visit me on her own, as Al is afraid to fly. Hi, Al! The trip also included many little visits with my sister, for which I couldn’t be more grateful.

Back in Boston (Somerville to be precise) one of the highlights of the trip was getting to wander through the house I grew up in. The people my mother sold it to still own it. And allowed me and Kaki and Dillon to tour the whole place. They could not have been a better fit for the house, they were friendly, warm, and very down to earth. I also was comforted by the fact that his superstitious nature had prevented him from painting over the children’s drawings he had found on the walls in the basement. They were works of art by my sister – witches with pumpkin heads and similar themes. Thanks also to the Bills for letting us stay with them in Maine, and my oldest high school friend Anne and Jeff (and their menagerie of pets) for their hospitality.

The trip was successful on many levels, but I did come home exhausted from the constant pain, and have yet to recover. To be honest, I’m not sure if the lack of recovery has to do with exhaustion from the trip, or if I’m looking at the new normal. I have had two treatments with the new chemo since returning, however, and it does seem to be having some positive effects. My appetite is better and I’ve gained back some weight. I now weigh 123 pounds. We’ll know more about where things after my next scan in a few weeks time.

Big love

Dan

Hello, this has been a long time coming. A lot of folks think I am traveling, well the truth is I have knocked out by fatigue.
My last cat scan did not go so well and it was discovered that my cancer is back and has spread to my liver. This makes me very, very weak, to the degree that I have just been on the couch for months.
I have started chemo hoping to slow it down. Won’t know for several weeks if that will work. I would like to say thank you to everyone who has sent me good thoughts and warm wishes. It is my wish that I could thank you all individually but I have not had the energy. My fatigue is so consuming that I don’t have the strength to really even speak on the phone very often. Fortunately the chemo has allowed my eating to improve some what but catching up after falling back to 120 pounds has proven a much more daunting task than I was hoping.

Anyway I am having random good days, which I am deeply thankful for as am I for all the offers of help love and support.

I wish you all health and laughter.

Lastly there are not enough words of thanks in this world for me to express for my dear sweet and best friend Amanda, aka Kaki.

DD

hellos and hellos

I would like to apologize to anyone who checks here to see how I am doing .    I have been trying to embrace what seems normal or should I say ordinary and not so heightened and intense which I feel keeps me away from reflecting on my condition , so as to get it out of the foreground of my thoughts.

We also realized this past weekend was exactly a year since first started having symptoms , time sure does fly when your having fun .

That said I am doing quite well. I ended chemo and had my first test cat scan which also went well . Kaki and I spent the last week of chemo in Hawaii at  Mike and Girrard’s lovely Kauai vacation home. They are partners who thought it would be rejuvenating for us to be there for some of my recovery . We had a great time I am posting a couple of photos and a video of me swimming in the ocean . swimming near queens bath As if this year were not fun filled enough I almost cut off two of my fingers while trying to get reacquainted with my wood shop. This happened an hour after I had a tooth pulled to replace an old dental fridge that had failed . Kaki told me to go home and rest but I didn’t listen ……    All is good though the cuts were surface flesh only no nerve damage or muscle stuff.        Thanksgiving was great got to spend it with cindy goldfield and midget  gang , my mom came out from NH and complained that it was too cold here , hello global warming . It was so great to show off to her that I am doing so well . I am at 145 pounds which is 20 pounds over my lowest weight .      Things are  as good as they could be , kaki and I are going to her folks in san diego for the Baby Jesus birthday  party, thats gonna be fun as I have never been.

Also since we have been through the ringer this year and came out the other side in tact  and only missing a couple of parts. We have decided to take a long trip around the big blue dirt ball we all call home. We  will  travelling on visas in more ways than one :0)

We are hoping to start in late april near the cuba and then go to eastern europe turkey then move into southeast asia eventually ending in new zealand. So we  would love suggestions on places any of you may have been that you loved.  We want to take advantage of my good health 

This update  is coming form the strange world of chemotheropathy. I am receiving it as I type. It’s 3:45. I started at 10 so I am feeling the goofy head, and I can not speak correctly because of the nueropathy.

It went quickly today and I went home awake and made a grass-fed  Prather Ranch steak with potatoes and white corn on the cob  – hello hobby !  The trip to the Yuba was a rejuvenating success, brought about by the company of two rivers: one providing a steady gurgling song coming down the mountain, the other a river of laughter and love coming off the mountains of some dear, sweet friends.  I wish this was something I could do with all of you at some point. It would make me so happy to be able to share myself with all my friends when I am feeling this well, especially since most of my strength is a direct response to the abundance of  love and care that I have been so humbled to have received from you all.

Today was my second day in a row in the chemotherapy clinic and  here’s why: I went yesterday to visit for the first time a woman named Ginny, whom I was introduced to through a person Kaki does yoga with .  She and I have talked on the phone several times – she has the same cancer I did, but in a different part of her pancreas. As I have explained before, the chemo is brutal and I  only had  four sessions. She is my new hero because she is on her 8th, and the doctors still can’t say for certtain wether or not she will be having surgery. Yet her attitude is positive and strong, which is inspiring   to witness.  My strength was also  enhanced by the knowledge  that the surgery was definitely happening (except for the brief hicup at the end of chemo). It was my intention to go and give her some support but I must say that after basking in her strength and beauty, I walked away having gotten as much support as I intended to share. In fact, more. Thanks so much, Ginny. You can do it.

Got some great news today – I weigh 142 pounds!  Hello, fatty!  Also found out the ” Ma”  is coming out for Thanksgiving.  Hmmmm, I wonder what we are gonna have to be thankful for… Her visit is really exciting because she has not been back here since  I left the hospital.  I owe a great many thanks to  my mom for being so strong through all of this, and for giving me the space I needed  to heal after  being in the hospital . Being a parent, I know this whole thing  has been her worst nightmare, and  she has done what has been best for me regardless of her needs or pain  which is why she is trully a great mother  And, thankfully, my mother,  because it was those seeds of her inner strength planted in me  that have grown into the powerful roots of  my tree.

Thanks to the generosity of other friends, Kaki and  I went to the symphony, which was great becase it felt so normal to just be out at a show .

I  I have also included a photo from the burning man that showed up this week in rolling stone  !

It is very early morning as I am typing, unless you are reading this on the East Coast. One of the strange side effects of the chemo is that I get woken up pretty early. I have probably mentioned this before… Anyway, I enjoy it as long as it’s not too early, the reason being that living in San Francisco I have come to realize that you never know what time of year it is – there are no seasons and, having grown up in New England, I really miss it.

I am not sure why, but for some reason the early mornings remind me of Autumn.  Speaking of chemo, it’s going well-ish, not too much discomfort, still mostly digestive disruption which is the great mystery of all of this.  In the middle of this round I had three totally normal bowel movements, which contradicts the chemo usual effects. (I just realized the term movement is predominantly used in conjunction with classical music, dance performances, great social change and going to the bathroom.  Now that I understand its dysfunction better I also understand why it is considered a great achievement i.e. movement.) Unfortunately though, it didn’t last, and now it is back to …. Well, let’s just say it’s more like a guy playing upside down buckets in the street for loose change or interpretive dancing to bad 8th-grade poetry than it is Beethoven’s Ninth or the New York City Ballet Company’s Swan Lake.

With that subject well covered, I move on.  Actually, I caught a cold, or The Cold, since so many people seem to have it, which I think is also giving me a false reading on the chemo. I guess that is kind of good because I seem able to handle it without too much trouble.

Not much else to report. I am hoping to go camping at the Yuba River tomorrow as long as my gut cooperates.  The Yuba River is one of those priceless free gifts you get when you live in California. It is also the place where Kaki and I discovered magic, a river monk named Yelvit, and that if freedom had a flavor it would be blackberry. Lately I spend a good deal of my time trying to reshape myself to my new reality. Especially as I am feeling better (or less sick). My mind and I have come to two major conclusions: First, that I am lacking in hobbies. This is the result I think of having a job that is technically a highly sought after hobby, so all my hobby needs were being met.  Second, that I don’t know how to cook (except eggs and potatoes). This is the result of living in this, aforementioned, season-less, (no pun intended but proud to have discovered it) dining utopia.

For, as most people know, it is very expensive here, especially housing, but eating out cheap and well is not very difficult,  which has left me lacking in the kitchen. So I have made it my new goal to make cooking my new hobby. So far this has involved mostly cooking meat, which until I got sick I had only done a couple of times before. My body has been craving protein.

It takes me so long to type that autumn has passed, and now outside the window it is spring, which in San Francisco means it must be late September.  So I am off to Bernie’s coffee to get some chai tea.

There are reasons, I have come to realize, why I have not been putting in journal entries more often than I do. They begin with the fact that I  was beginning to prepare for Burning Man. I  was quite busy and distracted, but it was the most normal I have felt in months. I had come to regard stepping away from the journal as embracing normalcy. In other words, outside of this journal I was not Dan, The Guy With Cancer. I could be just Dan.

I hope this absence has not left anyone wondering about my condition. I feel I have enough indirect connections with people outside of this blog so that everyone will have a general sense of my state of being. But for those who did not, I apologize for the delay.

Now, on to the details of the past few weeks:

One of the benefits of my situation is that I have been handed a handicapped placard for my car, which has translated into being able to have a golf cart or similar vehicle on the playa to get around – usually a big no-no unless it is heavily visually altered. And unsurprisingly, I was able to find on  craigslist a golf cart that has already been turned into a mini art car.

This was a particularly good find because this baby had 6 seats. I like the idea of being able to travel around the playa with up to six people rather than just myself and one passenger . The vehicle also gave us the opportunity to do something we love to do more than anything, which is give away Sno-Kones on hot afternoons. I was able to find a small ice shaving machine that mounted on the front of the cart, powered  by an inverter that ran off the cart’s battery. With the addition of a shade canopy, some articulated spotlights, and a decent sound system, she was looking good.

Before I go on about Burning Man, I should let everyone know that it was made possible by my oncologist permitting me to start chemo two days after returning from the playa.  I am actually typing from my chemo session now.

Other details about the chemo: I had such a good response to the original, very potent chemical combo that they are going to keep me on that regimen for my post-op series.  This is highly unusual and something of a double-edged sword. Though the chemo helped shrink and indeed amost kill the tumor before surgery, it is a very aggressive cocktail compared to the typical chemo given after surgery, and it’s a lot of work to go through.

On the plus side, I have gained three more pounds and am up to 135. And since pulling out the drain tube, I have experienced zero pain anywhere.

The biggest hassle right now is getting my diet to be as efficient as possible, in other words to gain weight and strength. Working on Burning Man has reminded me, though, that I still have a vibrant sense of drive. There were some days where I worked till 9 or 10 o’clock at night, and on the playa, where it could get up to 100 degrees or more, I was never slowed down.

I did, however,  experience constant low-grade digestive distress. Won’t go into detail for your sake, but let’s just say Winnie the Poo was a constant camp mate, and not very huggable. My appetite is quite good, and not limited in any way. I expect this to change now that I am back in chemo, but hopefully I will benefit from my experience and will deal with it more easily this time.

OK, back to Burning Man:

Cal, Kaki, and I spent a leisurely week getting ready to go out to the playa. This involved preparing the truck for its annual road trip and getting our newest little friend, the golf cart, ready for its journey up to Burning Man on a trailer. The golf cart, although entertainingly decked out with front and back seats, the front low and almost at ground level, the rear ones high and reached by a step, was missing some carburetor-ossity and lacked a certain spark, issues that needed to be addressed before we hit the playa.Thankfully, I was able to find everything I needed on eBay and the golf cart was purring heartily before we left.

Part of the reason for bringing the big truck was so Kaki and I could sleep in it – it provides a measure of comfort a tent couldn’t. But the other reason was to carry the centerpiece of out camp, an 18’ water tower I constructed for the Levi’s store in Union Square in SF. It was part of a water conservation campaign they undertook. Interestingly, I built and installed the tower when I was first sick, but as yet undiagnosed, so it seemed fitting that it went out with me.

The tank at the top of the tower was hollowed out, lined with an insulating blanket, fleece and pillows, and could rotate 360 degrees, providing a supremely comfortable view of the playa in any direction you liked.

To the tower, we attached lengths of a remarkable nylon fabric we picked up at Scrap, an art salvage yard in SF located a few blocks from my shop. The fabric was incredibly strong, flexible, and brilliantly colored. The water tower was particularly symbolic of beating cancer for me, because not only was I able to make it to Burning Man, but I have brought an art piece out to share every year since 2000, and I was able to do it again this year, in spite of everything that happened.  It was really a joyful thing for me.

Normally, we focus all our energy and attention on turning the truck (actually a retired Frito-Lay step van) into an enormous art car. This is a huge, exhausting undertaking, and was clearly beyond what I was going to be able to do this year. So out of this necessity, we began to make our camp the focus, a development which we found richly rewarding.  Though we are located in “walk-in”, at the very edge of the event, a remarkable number of people streamed through – strangers, friends, and passers-by alike, stopping into our camp to chat, sing, laugh, eat, drink, and in many cases return again and again. They were drawn by our tower (which glowed with the words “Camp Frosty” in ice-blue  light at night), the brightly colored shade, and the music and laughter flowing from our camp. I think their presence was a testament to the welcoming sanctuary we created there.

Our camp was so comfortable and enjoyable that we spent most of out time there, rather than wandering out to where most of the magic was. For those who don’t know, our camp is called Camp Frosty because we spent many years serving snow cones from an a roving art car out on the playa.The snow cones (or Sno Kones) were so popular and so ubiquitous that the essence of the cones has infiltrated everything we do. That’s how we came up with the name Camp Frosty, even though our camp is in a scorching desert, and why the name has stuck even though it’s been years (2006 was the last time) since we gave away cones on the playa.   But this year would be different –  we brought Torani syrup, conical Sno-Kone brand cups and the aforementioned little ice shaving machine.

With camp set up, everyone arrived, and everything in place, we decided to go out and revive our tradition of giving out frosty Sno Kones to the parched residents of Burning Man’s Black Rock City.

We started at the Temple of Transition, an enormous wooden structure far out on the playa. Its builders claimed, in fact, that it was the largest free-standing (i.e. no foundation) wooden structure in the world. Five smaller towers representing different points of transition in life – birth, death, etc. – radiated from a huge central tower, the Hall of Gratitude. The structure was very beautiful, and suffused with the sound of dozens of Tibetan prayer gongs played by programmed robotic arms. This is a place where people come to let things go – loved ones living and dead, memories, diaries, deceased pets, old versions of themselves.

The Burning Man event is quite a large party, but the energy at the Temple is always and has always been reflective, serene, and profound. It is fitting that we started there because there was where we intended to leave the jar with my pancreas in it, so it would be consumed by the flames on Sunday night.  One of our fonder memories is of our resident yogi, Dina Amsterdam, using her subtle arts to find people in need of not only a cool refreshing treat, but a treat for their hurting soul. She was especially adept at finding these people in the shadowy corners of the temple, and with a cone would draw them gently back into the sun. One of the great joys I got from this outing was not only reliving the incredible memories of  coning in the past, but also sharing it with people who had never done it before – Kaki, Estaybahn, Jason, and Dina.

Although this coning experience felt climactic and joyful for everyone involved, it would be amplified tenfold later that afternoon, when we found ourselves parked -or rather, moored – at the end of a rickety old pier.  This old pier was marvel, about 300′ long. It started at ground level at one end and meandered crookedly to a height of about 10’ at the far end. Along the way was a bait shop shack, and several people were “fishing” off the end of the pier with loaned poles.

It was at the end of the pier, in the “water”, that we found our golf cart-turned-trawler being inundated with fishing lines baited with candy and cookies. We would take these and carefully hook a Sno Kone to the end of their line. The Kones were precariously balanced and would have to be oh-so-carefully reeled in by the fishermen, to the the roaring cheers of the people above.  We have coned out on the playa many times but this time, angling for “Konefish” at what we renamed “The Koney Island Pier”, was by far one of the best.

Burning Man has a lot of focus on nighttime activities, not only due to the the heat of the day , but because a lot of the art and light effects are dependent on darkness. Strangely for Kaki and me, we spent a lot of nights sleeping. But one night we did go out, we stumbled on the Black Rock Movie Theatre. It looked like it had been plucked straight  out of the Midwest. Brick walls, a marquee, and a theater with 50 authentic old-school movie theater seats. Before entering, the concessions people ask you what you’d like – Hershey’s, Reese’s, Starburst. All free, of course. In the middle of a cold night, Kaki and I found ourselves snuggled down watching Robert Mitchum do a star turn as the malevolent tattooed preacher in “Night of the Hunter.”

The rest of Burning Man was spent relaxing in camp and taking leisurely tours around Black Rock City and the playa. The camp experience was hard to top, what with Estaybahn’s excellent cooking at every meal – the great company, and the great music . We didn’t feel too bad about Estaybahn doing all the cooking, because in his regular life he does not cook for a living. We ate pork shoulder, pot roast, risotto, and a delicious breakfast every day, all in conditions that would make an excellent setting for an extreme cooking show.

The only other part of Burning Man that was essential (and, at least partially, the focus for going) was the placement of a jar containing part of my pancreas onto the Temple so it would be burned, along with my hospital gown, on Sunday night. Kaki brought a box that the jar would fit in, wooden with a sliding lid. It was passed around for people to inscribe before we took it out at sunset to place it on the Temple.

We got to the temple with the box at dusk and searched the building for a good and proper place to put it. We finally selected a spot atop a beam over a walkway connecting the Hall of Gratitude to the Hall of Decay.  Though this may surprise some people, I do not like being the center of attention. So with all eyes on me, I quickly took the box out onto the beam, screwing it securely into place hurriedly and crookedly.

On returning back to the railing,  I realized I hadn’t even read what people had written on the box. I found myself feeling conflicted about whether to go back out on the beam and retrieve the box to read the inscriptions and photograph it. At this point I consulted my sage,  my dear old friend Calum Grant, about the matter. He said, without missing a beat, “Dude, you got away from it once. Why go back for it?” And that was that. I felt better and walked away, though I was still a wishing I had  done a better job placing and securing the box. I hadn’t walked ten feet before I saw on another beam, crookedly, hurriedly and nervously placed, an identical box.

I found myself placing this object at the Temple at Burning Man because this place is the center of my spirituality. It is a city based in the ideals of giving, sharing, and the need to accept whatever is put in front of you by nature or man. It has given me the strength to face the terrible ordeal of the last 8 months with grace and acceptance. That is why since learning I was going to be able to have surgery, it was my goal to take my pancreas in a jar to the Temple, where I feel closest to the concept of God,  and let it go in the midst of flames fueled by many other letting go’s.

The letting go would take place the following night when, after sunset,  the Temple of Transition would be set ablaze, surrounded by 50,000 hushed, reverent witnesses.

The whole of Camp Frosty who had not yet left Burning Man joined me at the Temple to watch it burn. As catharsis, this was a non-event. On one level it didn’t really feel like anything changed, and felt somewhat anticlimactic – but the act of putting it there, and taking the trouble of getting it there and placing it…that was cathartic. The burning had me pondering whether my sizzling flesh was raining down on everyone amidst the embers and ash, which was kind of gross.

Now the true cost of Burning Man  – we finished packing our camp the following morning and got on the road at 9 am . We travelled at a vigorous speed  of 20 mph for 75 feet, at which time we found ourselves at the back of a 15,000 car log jam. Luckily we had started early, as one of passengers, Bob,  had an 8:20 pm  flight out of Reno.

Flash to 1 pm – we had only moved 300 feet in 3 hours.  We talked with Bob about him heading to the head of the line on foot and trying to hitch a ride to Reno. Cal made him a cardboard sign, and he set off for the head of the line, over a mile away,  in a dust storm, on foot with one of his three bags.

The upside is that the wait in line turns into an impromptu Burning Man party. People share food, shelter, shade, and apparently body parts. I am referring to a particulary friendly couple who met in line and proceeded to put on quite a show for the multitudes, about three cars behind us and 50 ft from the porta potties. The guy looked looked like Brian Posehn with red dreadlocks, and he was carrying a  dead squirrel skin stretched over what looked like a ping pong paddle, and offering to rub people with it. Enough said.

We later learned Bob had hitched a ride to the airport and was on time for his flight. We arrived at Reno 20 minuteds after his designated departure time. Luckily though, his flight had been delayed and we were able to drop his bags off to him curbside at the Reno airport.

Exiting the Burning Man gates was the beginning of our 13 hour journey to the Bay Area.

The 7 hour wait in line, though not rigorous, is an exhausting battle with the heat and dust.  By the time we got to Truckee at 9 pm, we were exhausted and decided to stay with out good buddy Tacy at her ski cabin in Tahoe.  Mmmmmm,  warm beds! We did have to bring the food in the cars inside because of bears. Kaki and I got to take a dip in the hot tub, which was amazing.

I find myself back fully in reality – chemo is a reminder that I have more fight yet to fight.  Everyone who reads this should know that all your encouragement and support helped me to make it to Burning Man, and I am supremely grateful for it.  I’ll be signing off for now because the chemo is kicking in and making me very sleepy.

Hey friends,

Sorry, it’s been a while since my last entry. But there’s a very good reason for this. I am, as we speak, in the final stages of preparation for Burning Man, as many of you know an annual ritual for me.

I met with my oncologist on Aug 5th and he gave the okay for me to begin chemo a few days after I return from the desert.

We’ve got a great crew joining us for our annual pilgrimage, and as I’m still working my way back to my fighting weight, I’ll be tooling around in a sweet 6-seater golf cart that we’ve retrofitted to serve sno-kones. Kaki, Cal and I leave tonight, and we’ll be back on September 6th with lots of photos and stories to tell. I’ll update you all then. If anyone’s going to be out on the playa, you can find us at Camp Frosty in our usual spot, at 3:15 and L, in walk-in camping. look for the giant water tower and the big stepvan with the cloud mural . That’s us. Come by and set a spell 🙂

It is now Monday, and, well, it turns out after going to see the wizard yesterday I got one of my wishes granted after all. I had my bobble head drain removed and heres why . While finishing the update I was writing, I got a pain attack so intense and severe that I had to go to the ER at UCSF Hospital (my home away from home). I have (had) two tubes that are connected to my insides: one is a feeding tube, which I use for giving myself extra hydration (water), and the other is a tube that drains the body fluid from around my pancreas while it’s healing. Yesterday, as I wrote earlier, I was experiencing great pain in my groin, penis and abdomen. It seemed like the usual annoying but tolerable pain that I have been dealing with for weeks, but then suddenly (while I was typing) it sent me to the floor, writhing. So once I got my composure, Kaki and I decided I should get to the hospital before it got to the point where I might need an ambulance.
Once at the hospital, I was put on intravenous pain killers. Unfortunately all that did was make me feel high, but it did not quell the pain. The next step was a cat scan, which revealed the problem. My drain tube had shifted and was rubbing on bladder and other nerves. I am so happy to report that once it was removed all my pain vanished instantly. It was as if I had a thorn pulled out of my side.
I am typing this 12 hours later and I am thrilled to say that I have not had any pain today, not even from the proctalgia fujax.
This is the most comfortable I have been in months.
All I have to say now is wheeeeew….