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.