- December 16, 2012
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)Continue reading →
- December 11, 2012
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.
KakiContinue reading →
- October 26th
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.
- May 27, 2012
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.
- Dec 13th
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 healthContinue reading →
- sept 22
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 !Continue reading →
- September 16th
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.Continue reading →
- September 8, 2011 – Back from Burning Man
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.Continue reading →
- Getting ready for Burning Man
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 🙂Continue reading →
- Monday July 25th
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.Continue reading →
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….
- Sunday July 24th
These past few days have been productive on the nutritional front. This is thanks to a visit with Dr. Kirkwood and her nurse practitioner Robin. The issue is that I wasn’t getting enough digestive enzymes. I only have 40% of my pancreas now and apparently it produces about 8 oz of the enzymes that are used to digest food, especially fat, every day.Continue reading →
I was taking enzyme pills when I was on chemotherapy prior to the surgery, but now it is much more crucial to my health rather than just helpful. While I have been taking them pretty regularly, it turns out I was taking them incorrectly.
This explains why I lost three more pounds since the last visit. I am weighing in at a whopping 124 pounds.
But Dr. Kirkwood and Robin explained how to get the most benefit out of them, and I’ve been following their advice. The new regiment of taking them has made me feel a little stronger every day, which really helps with dealing with the pain, which is still debilitating at times. Fortunately, that too is diminishing. The pain is not really the worst part, it is the fact that I never know when it’s coming or where it is going show up, or how intense it will be. Take, for instance, right now. As I’m writing this, I have a sharp, stabbing pain in my groin and penis that sends me to the floor. I think now this qualifies as reality typing — its like reality TV but the visuals are all internally manifested (picture a scarecrow with a grimaced face grabbing his crotch like a baseball player).
My goal now is to gain weight so I can start chemotherapy in the second week of August. I had chemo before the surgery, which is unusual since it normally it happens after. What I did not know was that if I do not restart the treatments within three months after surgery, I will not be having it at all. As much as I dislike the chemo, it is essential. The goal for gaining weight is two pronged, the second being trying to make it to Burning Man over Labor Day. I have been participating for 11 years, this being the 11th. I am sure there are many of you who are not familiar with it, and if you are curious there are many photos at the web site www.burningman.com. If you aren’t familiar with it, search for photos of the temple. The temples have always been built as memorials and place to let go. I went into my surgery with a mason jar and the request of my surgeon to please put part of me being removed into it. I woke up with the request fulfilled. It is my intention to leave the jar at the temple where it will be burned at the end of the week, along with all the diaries, photos and personal mementos. The temples have provided a way of letting go for all kinds of things (for example in 2002 a crew of firemen from New York placed a chest with debris from the towers there), and I’m looking forward to burning the pieces of this saga.
Today (Sun 24th) I have woken up with a minimal amount of in my drainage tube. This is the drain that runs internally to the site of my operation filling a bulb hanging off my side with body fluids from the healing process. While I was in the hospital I had one on each side of me. The left one came out the day I departed the hospital, but the right one has had too much fluid to be removed. At times, I was getting up to 400 ml a day in that one, and the maximum amount allowed for removal is 25 ml. Luckily, the output over the past two days has been around that level. It will be great to have it removed, it’s like have a tennis ball tethered to your gut bouncing around like bobble head doll on the dashboard of an old truck. I am hoping to get rid of the feeding tube also!
So the reality TV of the mind just became reality, reality the scarecrow is off to the ER to find the wizard for something is causing him to have tremendous pain in his bobble head drain …..
- Week of June 15th – July 18th
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 amContinue reading →
receiving from everyone is uplifting and much appreciated.
- First Week Home – The week of June 12th
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.Continue reading →
- Saturday, June 11th – Going home
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.Continue reading →
- Thursday, June 2nd – Dan’s Version
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.Continue reading →
- Flashback! Wednesday, June 1st (Surgery Day) – Dan’s Version
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.
- Thursday, June 2nd
Dan is not receiving visitors today. He’s doing well,but trying to sleep and build his strength.
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!
Continue reading →
- Wednesday, June 1st – Surgery Day
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. 😉
- Tuesday, May 31st
Took a small break from my vacation to find and deliver a needle in a haystack. Actually, it was a small part for the track lighting in the kitchen remodel I had just handed off to Toph and Aaron. A part I had lost. And the internet was telling me that the manufacturer was no longer in business. Okay, a needle in a haystack might actually be easier to find.
Amazingly, in the lighting store in town, the lovely Russian salesman found me one in an old, opened box in the back. In fact, it was the only one in the box, and as far as he knew the only one in the store. Take THAT, haystack!
I promptly took it to the jobsite so there was no chance of losing it again. The kitchen looks amazing, by the way. Toph and Aaron have made great progress.
These T-shirts were designed and created by my dear friend Elizabeth Ross:
She brought them to the fundraiser and gave them away. They were a huge hit. We made another for Dr. Kirkwood and one for her chief resident who will be assisting her during the operation. And yes, folks, we are planning on making more.
Wound down the eat-a-thon with an incredibly delicious dinner at Serpentine (the lovely Erin’s other restaurant) with Kaki, Dillon, Ma, my brother Jimmy, Dave Streitfeld, and Cal. The dinner was wonderful except for this awkward moment we caught Cal an Ma in…
As Cal types this, it is striking midnight, and the food-a-thon has ended. We’re off to the hospital tomorrow to evict my unwelcome guest and kick him to the curb.
I would like to sum up my feelings right now with a single photo. Me and Dillon. I am 21 years old. He is 26 hours old.
Good night, people.Continue reading →
- Monday, May 30th
11:50 AM, SFO – Nana touches down.
I picked up ma at the airport. Now I can have surgery.
The eat-a-thon hit a small road bump with a terrible breakfast, but I quickly recovered with a delicious sushi dinner that night. Let it be noted that my mother, Mary, ate sushi for the first time ever. It consisted of a very, very small bite of albacore tuna. Though this may not seem like a big deal, this is a woman who, when we used to go out to Chinese restaurants in Boston, would ask the waiter for a glass of milk and some bread and butter.
- Sunday, May 29th
We woke up late again (I’m on vacation, right? So sleep I shall, dammit).
We spent the afternoon strolling through opening day of San Francisco’s newest flea market on Treasure island. The eat-a-thon continues – I had a two absolutely delicious cheese mushroom personal-size pizzas with an egg cracked right in the middle. Calum joined us there, and later, Jason. Calum and Kaki and I bought some 1500 thread count sheets for 40 bucks. They are unearthly soft. I also got Kaki a beautifully printed t-shirt, and found an amazing pair of white leather wingtips, bought from a guy named, coincidentally, Dusty (as some of you know, I use the name “Dusty” when ordering coffee or food).
They don’t call it Treasure Island for nothing.
Everything was great until we got home and noticed that after a while the bedroom smelled like kerosene. We hunted for the source for nearly two days before we discovered that my snappy new shoes were the offender. They can now be found on the street corner outside my house, gently off-gassing into the night.
Treasures in hand, we left the island and decided to go on a hike. Destination: Mt. Diablo.
For anyone unfamiliar with it, Mt. Diablo is a nearly 4,000 ft. high solitary peak with some of the most spectacular views in the Bay Area. In fact, it’s been said that with the exception of Mt. Kilimanjaro in Africa, Mt. Diablo has the most spectacular panoramic view in the world. It’s visible from most of the Bay Area and much of Northern California. On a clear day you can see from the Golden Gate and the Pacific beyond, to well past the Altamont pass.
This spring in San Francisco has been cold and windy, so we left that climate like a mangy, three-legged dog at the pound and headed to the East Bay hills and Mt. Diablo, which is typically 20 degrees warmer. Unfortunately, the East Bay had adopted a three-legged dog of its own. And this one was neither friendly nor housebroken. If anything, at 3,800 feet, the wind was colder. Kaki, being something of an exercise junkie, said, “Hey guys, let’s hike around the peak a coule of times and get warmed up. It’ll be just like it’s hot out.” So we gamely tramped all around the peak, taking multiple trails and ascending and descending hundreds of feet. I don’t mind mentioning that despite me being the one with cancer and all, it was Cal, Kaki, and Jason who were constantly chorussing complaints about their knees and joints. Pffffft. Knees. Really.
After a bracing hike, we drove back down mountain, where we were flagged down by a man and his two young daughters. They were pointing at something in the road in front of our car. Pulling over, we got out and saw what he had been pointing at – a juvenile (but still quite large) tarantula sitting square in the middle of the road.
After marveling for a bit and helping it to the side of the road, we drove on, only to discover a rabbit corpse being devoured by vultures another mile down the road.
California is such a wild place…
The eat-a-thon continued in spectacular fashion with a visit to the East Bay branch of another favorite place of ours, Burma Superstar. Pleased to say that the Oakland location is just as tasty as the SF one. Jason generously bought us all Burma Superstar T-shirts.
We wrapped up the night watching A Woman, a Gun, and a Noodle Shop, a great, oddball remake of the Coen brothers’ Blood Simple set in 19th-century China.
- Saturday, May 28th
Woke up at 11:30. Remember the days when I couldn’t sleep past 4 am? Oh, chemo, I miss you.
Speaking of chemo, it turns out that not only has all my hair not fallen out, but it’s gotten long enough to warrant a cut. This I got from my dear friend Sasha, new mom to a beautiful baby. And for the second time is as many days, cancer picked up the tab.
Kaki and I went to a restaurant we like in West Marin, about 40 miles away. It was a nice romantic drive in a gentle rain. When we got there, however, we looked at the menu and both decided we weren’t that excited about it. So we turned around and turned our romantic 40-mile drive into a romantic 80-mile drive. 80 miles later we arrived at Millenium, which is about three miles from my house. Millenium is one of our favorite restaurants. I love it because it’s the best food I’ve ever had. Kaki loves it because it’s the best food she’s ever had, and everything on the menu is vegan, so she can eat it all (Though Kaki is not vegan she is highly allergic to cow’s milk). The food there is exquisite – it tastes like butter is the first ingredient. For dessert we had chocolate mousse tart, chocolate cake, and a lemon curd ginger ice cream. Eat-a-thon continues!Continue reading →
- Friday, May 27th
Spent the morning writing journal entries from previous days. Seems a little “meta” to be writing that.
Had lunch at Slow Club with Cal. I had a cheeseburger, which marked the beginning of my eat-a-thon: a days-long mission to eat as much of as many different types of food while I still can.
In that spirit, after I ate with Cal I stopped off at Dottie’s True Blue Café for a hearty late-afternoon breakfast. Kurt (aka Dottie) bought my lunch. Thanks, cancer! (gives thumbs up)
Friday at 2 pm I began my 5 days off from work before surgery. Kaki and I spent the night with Kaki ‘s favorite addiction, Arrested Development.
Note to Jason, those bootlegged discs of AD failed in the middle of the Charlize Theron episode. Some friend.
- Wednesday, May 25th and Thursday, May 26th
I had a sobering meeting with Dr. Kirkwood about the actual details of my surgery. Holy. Shit.
I was not aware I would have so many tubes protruding from my body. One in, two out. I’ll be receiving nutrients though one directly into my small intestine, as my stomach may be paralyzed for a couple of weeks. Any pregnant or formerly pregnant women who can give me tips about dealing with an epidural (for seven days)? Any assistance would be much appreciated.
This is not a small operation. Dr. Kirkwood told me she booked the operating room for 14 hours. There will have to be a break in the middle, during which Dr. Kirkwood will have a snack and the residents assisting her will get a juice box and a bag lunch.
Despite this daunting news, I left the meeting comforted, and with even greater confidence in Dr. Kirkwood’s abilities.
Luckily, my mother is flying into town the day before the surgery. Knowing she and my brother will be around gives me great comfort. And of course, Kaki and all of my friends. Except for Cal, who has disappeared on some kind of walkabout and left me high and dry.
(editors note: Hi, this is Cal. I’m actually typing this as Dan speaks, and though i have to include everything he says, I can reliably inform you that he is full of shit and just busting my balls. Sorry Dan, one of the drawbacks to having an official stenographer 🙂 – and now back to our story in progress…
OK, where were we? After the meeting with Kirkwood I dropped Kaki off back at work and went to the jobsite to meet the granite installation guys, who to my chagrin did not show up till 4:30 PM. As a result, my planned quiet evening at home started at 10:30 PM.
On Friday I spent the day handingover the reins on the kitchen job to my shopmates Toph and Aaron. Hallelujah and praise the Lord! I could not be more happy and thankful that they are taking over. I have spent my entire illness remodeling this kitchen and when it looked like it would not be done in time for Jen and Craig to come home with their children it was very disappointing.
Now, thanks to Toph and Aaron, the end is in sight.Continue reading →
- Monday and Tuesday
Kept working on that kitchen.
- Sunday, May 22nd
Sunday was a continuation of the weekend’s festivities with Kaki’s family. Her brother Karl engineers circus-like flying performances for a living. So we went to see a performance he rigged, a balletic visual feast including flying dancers, hula hooping, and tetherball performed on the side of a four-story building. Incredible.Continue reading →
- Saturday, May 21st
Kaki and I drove east to Oakland to try and find some warm, windless weather.
San Francisco has had a bitter, cold spring. We haven’t turned our heat off yet this year, and it’s almost June. We spent Saturday wandering Oakland thrift stores well into the afternoon. We had a nice long visit with Dave and Deb, since they weren’t going to be around till after the surgery.
Tonight we had dinner with Kaki’s sister Karina and her husband Bobby. We also got to meet Bobby’es new truck, Susan. She’s from Japan. Dinner was at one of our favorite restaurants, Lolo
We followed dinner with a trip to Karina’s favorite ice cream parlor, Bi-Rite, where I got a hot fudge sundae. This marked the beginning of my eat-whatever-I-want onslaught. I’m not sure what I’ll be able to eat in the aftermath of my operation, so I’m tasting everything now.
The sundae was incredible. Unfortunately, the lavender ice cream was overwhelmed by the hot fudge. Sundaes should be a strictly chocolate or vanilla affairs, otherwise the delicate flavors get lost in the flood of chocolate sauce.
- Friday, May 20th
On Friday afternoon, Kaki and I went to see her brother Kyle inducted as an officer in the U.S. Army. While momentous enough in its own right, this event turned out to be the beginning of an extremely busy evening
Because of my chemo brain (see Monday, May 9th) I had ordered some doors for the kitchen I was working on in the wrong size. Luckily (ha!) I was able to pull the cancer card and have themanufacturing company remake the doors and UPS them out to me in record time.
I only mention all of this because I had to leave Kyle’s indoctrination ceremony early to chase a UPS driver through San Francisco’s Bayview District (think warehouses, housing projects, and industrial parks), because – as Murphy’s Law dictates – my regular driver’s truck broke down and his replacement didn’t know the route. Thus, the whole delivery schedule was thrown off.
After finally catching him, I headed over to the Huntington Hotel to meet the rest of Kaki’s family, including her father (an anesthesiologist) ,who had diagnosed the air-bubble-related shoulder pain instantly.
I would have made it to the Huntington on time, but I had to take a phone call from Casey’s Bar in Somemrville, MA, where a bunch of old friends from high school (whom I haven’t seen since high school) were holding a fundraiser for me. They decided to call me and pass the phone around the room. What an incredible experience! My iPhone had been turned into a time machine.
I did finally make it to the Huntington for Kyle’s reception, where i met Kaki’s extended family on her father’s side. I got the added bonus of getting to see her brother Karl and his wife Charlene, which was great because I haven’t seen them in over a year.
- Thursday, May 19th
I’ve spent the last couple of days lying with my head below my waist, trying to get the air bubble in my chest to disperse.
I have learned that when you have a laproscopy they blow your chest up like a balloon so they can see more clearly. This creates an air bubble in your chest which, apparently, commonly causes shoulder pain.
I spent the rest of the week lying low. and trying not to walk. It only seems to hurt when I walk.
- Tuesday, May 17th
Today’s the day: laporoscopy. Thumbs up or thumbs down. I woke up and went to the jobsite because I was so anxious and needed something to occupy my mind.
At 11:11 AM , I got a text message from Kaki wishing that the time till my procedure that afternoon would pass quickly. At that exact moment, I got a call from Dr. Kirkwood saying a surgery scheduled ahead of us had been cancelled. Could I come the hospital early?
The pre-op time at the hospital was pretty uneventful. Everyone there was consistently lovely and attentive and took great care of me. I felt in good hands.
As some of you may know, I have a long history with the time 11:11. So I saw saw the early Kaki/Kirkwood text/call as a good omen. But I think the even better omen was that as I was falling asleep from the anaesthesia, Dr. Kirkwood held my hand until I went out.
The next thing I knew I was waking up to a beaming Dr. Kirkwood, who kept repeating, “Your liver is clean, everything is fine.”
I immediately started bawling, which seemed appropriate, and trying to get out of the bed, which was not. They gently told me to stay in bed for a bit.
Kaki, Donna, and Cal hung out with me while I recovered, which only took a couple of hours.They disconnected me from a spaghetti of monitors and I went home, sore but very happy.
Because I find myself, after three make-or-break tests and three long months, still in that lucky 15% of pancreatic cancer patients who have a shot at survival.
- Sunday, May 15th
The fundraiser at Slow Club. Had an AMAZING time.
I wasn’t looking forward to having to answer a lot of questions about my condition or treatment, especially with this new, big uncertainty I’d been wrestling with over the past week. But there was none of that. It was an incredibly light, fun event. Everything that had been weighing on my mind disappeared, and I enjoyed the hell outta myself.
The turnout was awesome, the food was mouth-watering, and the atmosphere was celebratory. Erin Rooney put on a truly great event. Words can’t describe how grateful I am to her, and to have such wonderful friends.
I’m also grateful to Tom Sewell for shooting video at the event. We’ll get that posted up here as soon as it’s ready for public viewing.
Thanks to everyone for attending and sharing that night with me. I’ll never forget it.
- Tuesday, May 10th
Kaki and I wrote out a list of questions for our meeting with Dr. Kirkwood about the surgery, post-op recovery, and what to expect. This turned out to have been a futile exercise, because I was told in the meeting that I needed another test to determine if I was going to be able to have surgery at all. This was shocking, to say the least. With pancreatic cancer, the alternative to surgery is…well, there is no alternative. I felt like I had my legs knocked out from under me.
I found out that the the tumor had not shrunk as much as they had hoped, and that they needed to do a laparoscopy (a camera inserted into my abdomen through an incision in my belly ) to look at my liver to see if the cancer had spread there at all. If it had, even the tiniest amount, they would have to cancel the surgery. Though I thought this had long been decided, this laparoscopy was going to truly determine if I actually was a candidate for surgery.
And I was going to have to wait another eight days for it.
It seems that a large part of cancer treatment is waiting. It’s certainly one of the most difficult.
After getting this upsetting news, I spent the next four days studying what pancreatic cancer was all about, the numbers and statistics, and what was required for the surgery. I was confused: was this test just a protocol? If so, why wasn’t I told about it before? Suddenly I felt compelled to seek out more information, and this exposed me to all the horrible statistics that go along with this disease. It was a very confusing, disheartening, and terrifying period. Everything had seemed set an on track, and suddenly I had no idea what was supposed to happen next, what my options were, what the best course of action was.
One thing I learned was that whoever did the surgey had to have a lot of experience. Everything I read said this was crucial – that survival rates were directly tied to the experience level of the doctor.
My investigation led me to other hospitals that do the surgery I needed, a procedure called “The Whipple.” I wound up on the phone with Massachusetts General, which is the hospital I grew up with. They still had all my medical records back to the age of two. The delightful lady in the records room gave me a new record locator number and told me to call the oncology department.
One thing I’ve learned about this disease is that everyone involved with it is incredibly dedicated. It’s a noble thing, because the survival statistics are so grim.
The woman in oncology called me back in 30 minutes from her vacation in Florida and talked to me for about 45 minutes. At the end of the conversation, she told me to have all my records sent to Mass General and she would have everything reviewed by a pancreatic surgeon, free of charge.
I had a similar conversation with a woman at Johns Hopkins later that day. These people are truly committed to helping; I found these institutions via the internet, not through some connections. And their response was amazing.
I also found some places and doctors that were recommended by my friend Naomi Dabby. Naomi is a doctor in San Francisco who I met at Burning Man just once, but she has become my biggest medical advocate.
She spent several days seeking info on Dr. Kirkwood, and what she came back with helped reassure me I was in good hands. Dr. Kirkwood is very experienced and very highly regarded by her peers.
I got this information as I walked into a friend’s house to write a letter to Dr. Kirkwood asking some pertinent questions about her experience, the procedure, and my options. As I finished the letter, my phone rang. It was Dr. Kirkwood.
She had received a message telling her to call this number, it was urgent. I hadn’t called her, but my mother had. Dr. Kirkwood was teaching at the time, but she took time out from her instruction to speak to me for around 45 minutes. She was incredibly gracious, generous, and understanding of my situation. I hung up the phone with my fears much assuaged.
Now all that was left was waiting for the laparoscopic procedure on Tuesday.
- Monday, May 9th
One of the side effects of chemo is something called chemo brain, which was in full evidence on Monday when I forgot I had tickets to see one of my favorite bands, TV on the Radio.
Fortunately, Dillon does not have chemo brain and reminded me. I danced till midnight at the show, in anticipation of the good news I was expecting the next day when I was to schedule my surgery with Dr. Kirkwood.
- Saturday, May 6th
One of the wonderful things to come out of this whole situation has been reconnecting with some really exceptional people.
This was especially true on Saturday when I got to spend the afternoon with my friends Ron and Gail and their daughter Sky. We ate at our favorite sandwich place, Mario’s Bohemian Café in North Beach.
Saturday night we spent at my friend Will’s housewarming. We didn’t get home til around 2 am. I’ve been feeling more than normal lately. In fact, some days I feel even better than I did before I got sick.
- Friday, May 6th
Went in for the CAT scan. Just a routine test. Spent the week getting better.
The week was pretty normal as far as the after-effects of chemotherapy go. The only noticeable difference has been the persistence of the neuropathy. Neuropathy, for the uninitiated, is a catch-all term that refers to damage or interference with the nerves. For me, it manifests in a very heightened sensitivity to cold in my fingers and toes, and numbness in my two front teeth. Also a heightened sense of smell.
So. Went in for the CAT scan but knew from past experience I wouldn’t know the results til Tuesday, when I would meet with Dr. Kirkwood. Based on how I was feeling (great, overall), I assumed the test would show the tumor had shrunk to the size of a raisin, or disappeared altogether. But experience has taught me that what I assumed and what I felt didn’t necessarily matter. I would have to wait to talk to Dr. Kirkwood.
After the scan I went home, and Kaki and I got ready for Whit and Nicole’s wedding reception at Delfina. Being at public events is interesting for me now. People are always surprised that I’m there. I think they expect me to be more knocked out by the chemo. Based on what I’ve learned about my chemo regimen, I can’t say I blame them.
It was a great night. It was wonderful catching up with so many people I hadn’t seen in a while. It was great to be there, and to offer a toast to the happy couple. And the food was delicious – I ate till I felt like a goose being prepped for pate. I had to bring home my dessert (a strawberry and shortcake tort) because I was simply too full to eat it. It was delicious when I finally did – the first dessert I’ve eaten in many weeks.
We left the reception to pick up Robert and Christine at SFO. They spent the weekend at our place. It was great to have some East Coast energy in the house. Technically, Robert is responsible for hiring the “dinner band” for my fundraiser, since he introduced me to them via the internet. You can find them on this website via the link for “Inspirational Music”
- Monday, April 25th
Starting Monday my condition was 110%. The only negative aspect is that I wake up between 4:30 and 5:00 AM and can’t get back to sleep.
Despite this, my well-being allowed me to work on the kitchen job that’s been hanging around my neck like an albatross since December. I put in 31 hours this week. Some would say this is overdoing it, but my constitution is such that all this activity is actually strengthening my body. I’m looking forward to being weighed at my next chemo on Thursday.
The approach of chemo has always been something I’ve dreaded, but my newfound strength has given me some comfort in the face of it.
Especially the realization that it’s my last one.Continue reading →
- Monday, May 2nd – Thursday, May 5th
I’ve spent the past 4 days struggling through a cold. Working at about 60% capacity.
Feeling a little better each day. I’m looking forward to the CAT scan on Friday, which coincides with the wedding reception of my dear friends Whit and Nicole.
For the past 3 days I’ve slept til 7 am, thanks to a concoction Kaki developed combining homeopathic and other ingredients.
We got our tickets to Burning Man in the mail. Now the goal is to try to get surgery in time to be well enough for Labor Day weekend.
Looking forward to my friends Robert and Christine visiting from New York. Robert is the guy who does the spectacular balloon art at Burning Man and other festivals. For those of you who haven’t seen it, imagine a 2500 ft. long strand of balloons, pinpoint lights, and bells arcing up into the night sky. Or better yet, here:
All this will be a good distraction until Monday, when I meet with Dr. Kirkwood to decide about the surgery.Continue reading →
- Sunday, May 1st
The day I escaped my mothers womb 46 years ago. I woke up with the same cold, but feeling a little bit better.
Decided to got to my friend Cal’s for an afternoon brunch. Luckily for him and Kaki, and everyone involved, I was somewhat out of it and thus completely unsuspecting and unaware that there was a huge surprise party planned for me. This even though one of the guests rolled up to the door just as we arrived. I wrote it off since it was Greg Piper, and it was totally feasible he was just randomly biking by.
This was just the medicine I needed to lift my cold – at least for the afternoon. And it was a good practice run for the big dinner I’m having on May 15th.
I received several lovely gifts, one in particular I would like to note that came from Lizzie Ross. Somehow she had a roll of film that was taken at my son Dillon’s high school graduation seven years ago. She selected the best one and had it framed. It was one of the most surprising gifts I received, and also the loveliest. Thank you, Lizzie.Continue reading →
- Friday, April 29th
Superman is dead.
Killed by the shaking of some random hand, which transferred germs. Germs containing just enough Kryptonite to bring the Man of Steel crashing down.
This is a dramatic way of saying that somehow I have caught a cold. Normally when I catch a cold, I get sick for five or six hours in the morning, throw up, then find a spot to park my car in the sun and sleep, and sweat it off. I’m usually fine by evening.
I employed this method to no avail, and spent Friday and Saturday feeling awful .Continue reading →
- Thurday, April 28th
I normally wear a safety helmet when I go to chemo, one I got at the Alameda Flea Market.
It’s a vintage helmet, probably originally for a civil defense worker in the 1950’s. I’ve worn it each and every time I’ve gone to chemo, and since this was my last scheduled session, Kaki decided to don hers as well. So we set off enthusiastically in our helmets for our meeting with my oncologists, celebrating that this was to be my last chemo.
To out chagrin the doctor, although very entertained by our positive attitude, informed us that this was actually not the last chemo. Normally, he explained, chemo continues after surgery as well, sometimes for six months to a year.
So we should hang on to the helmets.
As a side note, I feel great and have a great sense of comfort from my oncologist and my surgeon. I feel like I’m in good hands.
My oncologist has very smartly disseminated information to me only when necessary. For example, it wasn’t until this last chemo session that he informed me that I was on the most brutal chemotherapy regimen available.
This was subsequently confirmed by two doctors I met who each said, “Huh, I’ve never seen someone on both oxyplatin and folfirinol.” Both remarked on how well I was doing, considering that each one separately usually knocks people out. Their comments seem to prove that my natural physical health and strength have been my greatest gift, besides the presence of Kaki with me every day.
It should also be noted that upon being weighed, I had gained 9 pounds. All thanks to my Mendocino All-Natural Weight Gain Program. Smoke an ounce, gain some pounds!
During the meeting with the oncologist we scheduled a CAT scan on May 6 to reimage the tumor and decide if it has shrunk enough for surgery. This will be decided by my surgeon Dr. Kirkwood on May 10. Although I am looking forward to all of this ending and getting back to a normal life again, the concept of the surgery is indescribably overwhelming. Especially now that my poops are so brown, which is a direct sign that my pancreas is functioning properly.Continue reading →
- Sunday, April 24th
The improvement in my health was reinforced dramatically by the hike I took from the top of Mt. Tamalpais to Stinson Beach in Marin with Erin Rooney and Kaki. Approximately 6 miles. Breathtaking views.
A note to anyome who lives in the area:
There’s a bed and breakfast called Redwood Haus at the bottom of the trail. They provide a taxi service back up to the top for $20. Even the non-cancer stricken of our group though this was a great idea, since their calves were burning as well.
- Wednesday, April 20th
I’ve noticed a strange sensation when I eat meat, especially fish. It feels like the flesh is adhering to my bones, building muscle. My muscles have all come back at least 25%. Two weeks ago I had no deltoids, pectorals, forearms, or biceps. These all have now made modest reappearances, like Spring’s first buds, eager to bloom.
I’m no longer getting winded on stairs and actually feel 100% healthy. Which leads me to a very disturbing paradox – the concept of having my organs rearranged to work better seems counterproductive to the better health I’m feeling now.
This week has been completely and totally normal. This continued (and admittedly irrational) doubt about the continued presence of cancer due to my good health was fortified throughout the week as I continued to eat three meals a day, including various kinds of meat. Adding to my sense of well-being and this state of feeling cancer-free are my utterly normal-looking stools, dookies, numbers 2’s. Trying not to say poop here.
I even ended up working a bit this week.
Went to see Dave Chapelle at The Punch Line With Mike O’Reilly and his French designer Gerard Pronko. Although Dave is still hilarious, I was reminded that some of the best times I have laughing are with Mike and Gerard, whom I look forward to recuperating with in Hawaii after the surgery.Continue reading →
- Tuesday, April 19th
Went out for a sushi dinner. It’s the first time I’ve eaten raw fish since this whole thing started. My diet for the past year has somewhat mirrored Kaki’s, that is to say a strict vegetarian diet that includes goat cheese and eggs, but i never missed meat or craved it. But since dropping from 168 lbs. to 131, every time I am around a flesh-based food product, I turn into an eating machine.
That night definitely triggered my sushi craze. I’ve had it four more times since then, with increasing volumes of fish each time. People are noticing my beautiful, radiant glow. I’m hoping this is not from the Fukushima power plant in Japan. Gotta check where that fish is sourced from.
- Thursday, April 14th
Went smoothly. I felt satisfied that during this chemo session I was able to call the company that makes the chemo drip machines and ask them how to turn down the piercing beep that alerts the nurses when the bag of chemicals is empty. Started a small revolt among the other chemo patients in the chemo lounge who agreed that the beeping and the alcohol wipes were the worst part of chemo.
I must be feeling better because I was verbally assaulted by a nurse who demanded I not touch the machine (which I hadn’t). I explained to her that I was just trying to figure out how to make our time in chemo more audibly pleasant for everybody. She seemed unmoved.
Then it was off home where I began my second round of internal medicine (i.e. I finally started smoking the right weed).
As I’ve mentioned before, up until this point I had not been eating much and have continued to lose weight. But almost as if I’d been given a prescription by Dr. Houdini, this situation has magically transformed. The weed, an indica strain, wiped out my nausea and gave me an extreme case of the munchies. This marked the beginning of my journey back to three meals a day.
It was so effective that on Friday night I found myself at Bloom’s Bar on Potrero Hill at my friend Erin Rooney’s birthday party, where – though I was abstaining, obviously – I was able to revel with lots of drunken, empathetic friends.
I continued to eat regularly for the rest of the weekend, occasionally smoking a little weed to trigger my appetite. By Monday, the weed became unnecessary and I was back on a normal eating schedule for the first time in I don’t remember how long.
One of the benefits of this regimen is that now I don’t need to take any more nausea meds, which makes chemo and my morning cup of chai my only two medicinal supplements.
- Monday, April 11
Felt like I was at 95%. Huge difference from last Thursday. I can feel the next few days before my next chemo are going to be good. My body’s telling me I’ll be feeling fine.
Oversaw the delivery of the cabinets for the kitchen remodel I’ve been working on for my dear, sweet clients Jennifer and Craig. Jennifer is the mother of a two-year old and newborn twins as of December. She thought it would be a good idea to stay with her parents in Minnesota while I remodeled their kitchen. This started in the middle of December. Fortunately I was done with all the heavy construction when the pain peaked. I actually got the call that they thought I had pancreatitis while I was sweeping up the last of the construction debris.
Fortunately, since the hospital stay and starting chemo, I’ve only had to oversee painters, tilers, and sheetrock workers, and not actually do any labor myself. I say fortunately because I’ve lost about 60% of my muscle mass. So on Monday I found myself driving a truckload of cabinetry over to the jobsite with my friend Tim and my brother Jimmy. They did the lifting and I told them where to put them inside.
Which brings me to my next point. I’ve added a “Gratitude” button to try in some small way to express my thanks to everyone who’s been there for me, reached out to me, and supported me through this tough time. The list is incomplete and growing. Please take a minute to check it out.
Third chemo on Thursday.
- March 31st-April 10th / 2nd chemo
Had 2nd chemo Thursday. Was out and about on Friday and felt okay, strangely. Went out to dinner on Saturday night and ate a huge meal. Felt fine. But after that I’d been feeling progressively worse each day. Nauseous and unable to eat much.
I think I’ve eaten about 3,000 calories this whole week, of which I think 1,500 was that meal I had at Sunflower Saturday night – a delicious Vietnamese vegetable curry. (Note to self: don’t accept free Vietnamese iced tea after 9 pm. I was up literally all night. That was the most caffeine I have consumed in two months. I think the Vietnamese call it liquid meth.)
I burned off those 1,500 calories at the Alameda Flea Market on Sunday. For those of you who don’t know, the Alameda Flea is held the first Sunday of every month on the grounds of the old Alameda Naval Air Station. It covers a full two-and-a-half acres, and everything sold there must be at least 25 years old. It is a treasure trove of wonders and delights, and going there is one of my favorite things to do. This is evident in the household full of objects I have purchased there, from 100-year old lithograph print of a church (a church that I later accidentally stumbled upon in Paris with Barbara Caldwell) and the art deco pewter ashtray nymph on my mantelpiece to the lucite-encased ticket to the 1892 Chicago World’s Fair, a gift from my son Dillon. The most bizarre thing I’ve bought there is a set of half-melted copper and latex antique baby dollhead molds. They have been banished to a box somewhere due to the horror and dismay they cause anyone who looks upon them.
Strangely, this was the first day I went to the Alameda Flea and didn’t buy something. Kaki and I were looking for a desk, and although we found one we loved, it was being wheeled out the gate by the person who had bought it. I guess the reason I didn’t buy anything is I was so focused on looking for the desk, not because I haven’t been purchasing things. The future is mine and I shall not sway from buying something because of a fear that tomorrow may not come.
This belief was borne out by the beautiful art deco desk Kaki and I found on craigslist (that’s ‘classifieds’ to you 20th century folks) two days later. And it was less expensive than the one art the market.
So I started feeling worse late Sunday, and it got worse with each passing day. It peaked (or bottomed out) on Thursday. No appetite and lots of nausea. I feel like I’m still losing weight.
A dear friend who shall remain nameless (whose name starts with an ‘M’ and ends with an ‘E’ and sounds like something you sing into) brought me some traditional medicinal herbs to help me deal with the nausea and lack of appetite. Additional note to self: Like Vietnamese iced tea, this should not be imbibed after 9 pm. I found myself self-exiled to the couch, staring at the ceiling and trying to ignore the sounds of someone breaking into my house. Turns out it was the wind and my imagination jimmying the lock.
Apparently this was due to the strain of herb, and I have been assured by another dear friend in Mendocino County (whose name starts with an ‘S’ and ends with an ‘E’ and rhymes with the part of the shirt that covers your arm) that the next strain will do the trick without causing Vietnamese Tea Syndrome. It’s great having so many friends so well versed in the traditional Native American healing arts.
Starting on Friday, I’ve been feeling incrementally better each day.
- March 22-29
Have made tremendous strides. Feeling great. The chemo seem to have shrunk the tumor already. I’ve got a full appetite and can eat just about anything. I don’t even need to take the enzymes. I’m having minimal side effects from the chemo and have full energy. The only thing out of the ordinary is some weird tingling in my feet and fingertips. I feel so good I stopped taking painkillers. And I was finally able to deliver Kaki’s bed, which I made for her at Christmas.
The only negative experience so far has been withdrawal from going off the painkillers so quickly. Consulted with the doctors and we came up with a schedule to wean me off them more gradually.
Felt good enough to go to the Sing-a-Long Wizard of Oz at the Castro Theater with my ma, my brother, Kaki and Calum.Continue reading →
- March 18 – First Chemo
But first, I have to have an access “port” installed in my chest. I will be essentially plug-in-able for the duration of the chemo. That’s at 10 am. Chemo starts at 1 pm. 5 hours of chemo at the hospital followed by 48 hours with a pump at home.
Slept for three days afterwards. Totally wiped out.Continue reading →
- March 17
My cousin Stephen arrives from Washington, stopping to spend time with me, my mother and brother on his way back home to Korea. Just in time for St. Patrick’s Day! Great to have him. Hoping he brings his red-haired leprechaun luck.Continue reading →
- March 9-16
Managing pain. Worst managerial job ever. Not able to eat much. Been given a schedule of painkiller cocktails, and a scrip for digestive enzymes, which I will need in order to eat, since the tumor seems to be preventing my pancreas from producing them. At one point taking 160 mg of Oxycodone a day. We call it the Rush Limbaugh. I have no idea how he did his radio show on this stuff. Anxious for chemo to start.
I wish I could get over-the-counter chemo at Walgreen’s. Alas, it’s all Snuggies and Sham-Wow’s.Continue reading →
- March 8
Released back into the wild. Chemo starts in a week and a half.Continue reading →
- March 7 – Diagnosis Day
Diagnosed with pancreatic cancer. Monday, March 7 2011 joins the line of other Black Mondays in our nations history.Continue reading →
- March 3-6
At the hospital, awaiting the results of the ERCP ultrasound scope. Four days of waiting, enjoying the fine hospital food and the total lack of fresh air from the sealed windows.
The nursing staff is fantastic and the stay has been overall excellent. My room resembles walk-in camping at Burning Man. There is a steady stream of visitors in and out. Lots of laughs. According to the nurses, this place has become known as “The Party Room.”
That said, this place can sometimes feel like a psych ward. My neighbor (we call him Chief because he looks like the Chief from “One Flew Over the Cuckoo’s Nest”) barks like a dog at sunset every day.