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.

It’s been quite some time since I’ve entered anything into this journal. My recovery has left me couchbound for the last three weeks. I have been out of the house six or seven times at the most. Even short walks cause my stomach to cramp up.

Fortunately, my proctalgia fugax attacks have diminished in frequency to once or twice a week, which makes recovery a lot less painful overall.

My main struggle over the past four weeks has been trying to consume food and derive nutrients from it. No matter what I would eat I would be hungry within 20 minutes, and I was always very tired. I have since discovered that I was not eating enough pancreatic enzymes with my food. Since upping the enzyme intake, I am recovering faster and have even gained back some weight

Two weeks ago I had a visit with my oncologist, Dr. Ko. At that point I was so
weak from malnutrition that I was actually sitting on the floor of his office with my
head resting on the chair because I was too tired to sit. Upon seeing this, Dr. Ko said I was obviously not ready to begin chemo.

To my surprise, he said if I had not significantly improved by the third week of August, I would not be getting chemo at all because if it is not begun within 3 months of surgery, the effectiveness of chemo diminishes significantly.

You may not know this, but pancreatic cancer has a high return rate, so I definitely need more
chemo. I should add that despite the setbacks, I feel like I’m on trajectory to be well enough to make the deadline

Since being home from the hospital,  I have hardly had any visitors and have not spoken very much on the phone with anyone. This has been largely because of my utter exhaustion from lack of nutrition. That being said, I would like to thank everyone who has reached out to me for your care and concern.

Although I have not made many journal entires since being home, the warmth I am
receiving from everyone is uplifting and much appreciated.

My recovery at home has been hindered by a serious and painful condition I have developed. It’s called proctalgia fugax. It’s a this is a condition where the muscle inside your anal sphincter spasms. It literally feels like you’re being stabbed. It turns out I’ve had this condition whole life, but attacks would occur only a few times a year and lasted only 10 or 20 seconds.

I had the first attack the day after I came back home. It continued for about eight excruciating days. Unfortunately Dr. Kirkwood was out of town, and there were no drugs available to alleviate the pain. The attacks were exacerbated by any kind of bowel movement or gas, so it diminished my desire to eat. It also made having visitors impossible – the pain would cause me to scream out loud.

This is also why my page hasn’t been updated in a while. I’ve been basically huddling on the couch for the last two weeks.

During breaks in the pain my appetite has been good. I’ve been desiring red meat again. One of the first big meals I ate was a delicious steak Deb Fink made along with husband Dave’s mashed potatoes. The condition seemed to alleviate by itself towards the end of the week. Which of course coincided wth my first visit with Dr. Kirkwood, fresh back from her camping trip. And of course, with her magical healing powers knew instantly how to alleviate my condition: a sublingual antispasmodic drug.

The visit with Dr. Kirkwood brought other good news. . Other than the proctalgia fugax my healing has fone exteremely well. I have only one tube left in my side, which removes fluids from the surgery site so that they don’t collect and abcess. This last tube will be removed in 4-6 weeks.

Apologies for the long delay in this posting. I’m still very week and dealing with the pain issues, but will be doing my best to keep you all updated and informed in a timely way. Thanks as always for your kind messages and thoughts. And to those of you who donated items for the auction and those who bid on them, thank you from the bottom of my heart. It means more than I can express.

After packing up the room and going through what felt like a lengthy pre-flight check with a nurse, I was ready to go. By  a strange coincidence, my mom was headed back to Boston today. After he took her to the airport, Cal came by with the car, we loaded up all our belongings on a rolling cart, and we headed out. I had to be wheeled to the door in a wheelchair, which when you think about it is not the best advertising for the hospital. Seems like they’d want the people leaving to come out looking more spry.

On the way home, we stopped at the T-shirt fabrication shop on Haight to pick up the “Hey Cancer, Suck It!” T-shirts we’d ordered. It was strange riding in the car, being out on the street again, watching the world hustling by going about its business.

Once home, I decided I felt like a meal. We took a short walk up the street to Whole Foods, stopped by Bernie’s cafe to say hi to the lovely Bernie, and dropped some scrips off at Walgreens. Then I celebrated coming home by cooking a (very) late breakfast for Cal, Kaki, and myself: scrambled eggs, tater tots, and toast with delicious marionberry jam sent to me by my dear friend Bob.

It’s good to be home.

Spent the morning figuring out what each of the tubes coming out of me did and how they worked, and learning about my different pain meds. I am to be on an epidural for the next seven days.

I have continued to feel very anxious. But that anxiety was totally relieved by Dr. Kirkwood. She is so incredible. She came to check in on me and personally changed my dressing and drainage tubes.

Being constrained the way I was has been a great incentive to get out of bed as soon as possible. As if I needed more motivation, I was told that I should get moving as soon as possible to avoid blood clots and pneumonia. That was all I needed to hear. Today I was out of bed by 1pm and took a short walk down the hall.

That’s Lisa in the photo, a fantastic nurse. I took a total of three walks today. And did a little dancing. In fact, added that to my regimen:

In preparation for leaving, I’ve had all the tubes removed from me except for one drain. The last serious procedure I Had was the removal of the drainage tube that snaked up my nose and drained my stomach. If you’re interested, you can see actual video of the removal of my nose tube at Fan Dan’s Plan to Ban Cancer, Man on Facebook. Fair warning: may not be for the faint of heart.

The day before I was discharged I had a chance to visit with all the nurses on the 14th floor. They’re the ones who took care of me when I was first admitted and diagnosed months ago (see the “How I Got Here” link). It was great to see them all.

The night before my discharge, at around ten to midnight, Dr. Kirkwood came to my hospital room. She was fresh from surgery, still in her scrubs. She wanted to visit because she was leaving town for a week on a much-needed vacation and she was nervous about leaving her patients. She wanted to check in on me one more time. Again, she instilled me with great confidence.

I arrived at the hospital in the early morning. Dr. Kirkwood was presented with a bag full of snacks to be distributed to her surgical team. For energy. This surgery was gonna take 12+ hours. Refueling would be essential. The snacks consisted of mini juice boxes and a variety of high quality protein and nut bars, as well as some dried fruit.

We also presented her with a “HEY CANCER, SUCK IT!” T-shirt (pictured in the Tuesday, May 31st journal entry), and gave her a second one which I told her was to be given to the intern who did the best job. It went to her chief resident, Tim.

Finally, I handed her my unicorn band-aid. It was given to me by my three-year-old friend Pearl, for good luck. Dr. Kirkwood looked at it, then put it in the pocket of her scrubs. I woke up with it taped so securely to my left arm that it is not coming off any time soon, at least not without a bunch of hair. I’m thinking it’s payback for the poster (see the “Dan’s Doctor” link).

Once again, Dr. Kirkwood held my hand as I went unconscious, and she was the first person I saw when I woke up. Her beaming smile told me everything I needed to know about how it went.

Things were so good I bypassed the ICU and moved straight to the Healing Hilton. So dubbed because the view from this room is one of the best I’ve experienced in 15 years of sleeping in San Francisco.

Despite this, there are simply not words to describe the shock and anxiety I felt that first night. I had five tubes coming out of my body: one in my nose which snaked down to drain fluid from my stomach, two coming out my side draining fluid from the suture points inside my belly, a feeding tube directly into my intestine that for the next several days would hang unattached, and a catheter. And that does not even count the epidural and tangle of IV’s I was connected to.

Although my mouth was dry as a bag of chalk, I was told I was not going to have water or food for 3-5 days. This  stark fact, hitting me all at once in the midst of the worst thirst I had ever felt (and still woozy from the anaesthetic), made me tremendously anxious. On top of that I couldn’t take anything to let me sleep. I spent the entire night staring at the clock. The only relief came from the swabs, little sponges on sticks like lollipops, that I could periodically moisten and rub on my lips and tongue.

I can say without exaggeration it was the worst fucking night of my life.

Dan is not receiving visitors today. He’s doing well,but trying to sleep and build his strength.

Kaki reports:

Twelve hours out from surgery, and Dan looks great. He didn’t sleep much last night, but several doctors have said that he looks better than just about everyone they’ve seen after this procedure. His arm is a little sore from the straps they used during surgery, but other than that he has very little pain. He’s still very sensitive to smells, and has banned the use of alcohol wipes and hand sanitizers in his room. (So no perfume, cologne, or other fragrance if you’re visiting him in the coming days, folks. And no flowers. -ed)

Oh! And although he hasn’t been able to enjoy it yet, his room has a great view of USF, the towers of the Golden Gate, and the Marin headlands!

Hey folks, Calum here.

Dan’s in surgery as we speak. He went in around 8:30 this morning. We are looking at 10-14 hours of surgery depending on a variety of factors.

We’ll be updating you as often as possible on this site and on Facebook at “Fan Dan’s Plan to Ban Cancer, Man.” This will depend on how often we get updates  (every few hours or so) and the accessibility of the wonky, wavery wi-fi signal here at UCSF. I’m here with Kaki, Dillon, Dan’s mom, and his brother Jimmy.

Here’s what we know so far:

We got two brief updates from the O.R. about three and five hours in, both saying, “Dan’s doing great.”

We just (5:15pm) received a brief but happy voicemail message from Dr. Kirkwood. The tumor has been succesfully removed! There remain another four or so hours of surgery, but this is good news. Please keep sending those positive thoughts. And leave Dan a note here (in the “Guest Book” section) or on his Fan Dan’s Plan to Ban Cancer, Man Facebook page. I know he’ll appreciate it when he returns to what he calls consciousness. 😉