With the auction over, I wanted to take a moment to express my gratitude.
I especially want to say thank you from the bottom of my heart to all the beautiful, talented people who generously contributed their skills, their art, their services to this endeavor. I am so moved by the enthusiastic response, and I want to thank each and every one of you. Thanks also to the people who bid on the auction items. It’s a long road ahead, but the support I’ve gotten from this incredible community has made the journey a lot easier, and sunnier. For that, I will always be grateful.
My recovery at home has been hindered by a serious and painful condition I have developed. It’s called proctalgia fugax. It’s a this is a condition where the muscle inside your anal sphincter spasms. It literally feels like you’re being stabbed. It turns out I’ve had this condition whole life, but attacks would occur only a few times a year and lasted only 10 or 20 seconds.
I had the first attack the day after I came back home. It continued for about eight excruciating days. Unfortunately Dr. Kirkwood was out of town, and there were no drugs available to alleviate the pain. The attacks were exacerbated by any kind of bowel movement or gas, so it diminished my desire to eat. It also made having visitors impossible – the pain would cause me to scream out loud.
This is also why my page hasn’t been updated in a while. I’ve been basically huddling on the couch for the last two weeks.
During breaks in the pain my appetite has been good. I’ve been desiring red meat again. One of the first big meals I ate was a delicious steak Deb Fink made along with husband Dave’s mashed potatoes. The condition seemed to alleviate by itself towards the end of the week. Which of course coincided wth my first visit with Dr. Kirkwood, fresh back from her camping trip. And of course, with her magical healing powers knew instantly how to alleviate my condition: a sublingual antispasmodic drug.
The visit with Dr. Kirkwood brought other good news. . Other than the proctalgia fugax my healing has fone exteremely well. I have only one tube left in my side, which removes fluids from the surgery site so that they don’t collect and abcess. This last tube will be removed in 4-6 weeks.
Apologies for the long delay in this posting. I’m still very week and dealing with the pain issues, but will be doing my best to keep you all updated and informed in a timely way. Thanks as always for your kind messages and thoughts. And to those of you who donated items for the auction and those who bid on them, thank you from the bottom of my heart. It means more than I can express.
After packing up the room and going through what felt like a lengthy pre-flight check with a nurse, I was ready to go. By a strange coincidence, my mom was headed back to Boston today. After he took her to the airport, Cal came by with the car, we loaded up all our belongings on a rolling cart, and we headed out. I had to be wheeled to the door in a wheelchair, which when you think about it is not the best advertising for the hospital. Seems like they’d want the people leaving to come out looking more spry.
On the way home, we stopped at the T-shirt fabrication shop on Haight to pick up the “Hey Cancer, Suck It!” T-shirts we’d ordered. It was strange riding in the car, being out on the street again, watching the world hustling by going about its business.
Once home, I decided I felt like a meal. We took a short walk up the street to Whole Foods, stopped by Bernie’s cafe to say hi to the lovely Bernie, and dropped some scrips off at Walgreens. Then I celebrated coming home by cooking a (very) late breakfast for Cal, Kaki, and myself: scrambled eggs, tater tots, and toast with delicious marionberry jam sent to me by my dear friend Bob.
Spent the morning figuring out what each of the tubes coming out of me did and how they worked, and learning about my different pain meds. I am to be on an epidural for the next seven days.
I have continued to feel very anxious. But that anxiety was totally relieved by Dr. Kirkwood. She is so incredible. She came to check in on me and personally changed my dressing and drainage tubes.
Being constrained the way I was has been a great incentive to get out of bed as soon as possible. As if I needed more motivation, I was told that I should get moving as soon as possible to avoid blood clots and pneumonia. That was all I needed to hear. Today I was out of bed by 1pm and took a short walk down the hall.
That’s Lisa in the photo, a fantastic nurse. I took a total of three walks today. And did a little dancing. In fact, added that to my regimen:
In preparation for leaving, I’ve had all the tubes removed from me except for one drain. The last serious procedure I Had was the removal of the drainage tube that snaked up my nose and drained my stomach. If you’re interested, you can see actual video of the removal of my nose tube at Fan Dan’s Plan to Ban Cancer, Man on Facebook. Fair warning: may not be for the faint of heart.
The day before I was discharged I had a chance to visit with all the nurses on the 14th floor. They’re the ones who took care of me when I was first admitted and diagnosed months ago (see the “How I Got Here” link). It was great to see them all.
The night before my discharge, at around ten to midnight, Dr. Kirkwood came to my hospital room. She was fresh from surgery, still in her scrubs. She wanted to visit because she was leaving town for a week on a much-needed vacation and she was nervous about leaving her patients. She wanted to check in on me one more time. Again, she instilled me with great confidence.
I arrived at the hospital in the early morning. Dr. Kirkwood was presented with a bag full of snacks to be distributed to her surgical team. For energy. This surgery was gonna take 12+ hours. Refueling would be essential. The snacks consisted of mini juice boxes and a variety of high quality protein and nut bars, as well as some dried fruit.
We also presented her with a “HEY CANCER, SUCK IT!” T-shirt (pictured in the Tuesday, May 31st journal entry), and gave her a second one which I told her was to be given to the intern who did the best job. It went to her chief resident, Tim.
Finally, I handed her my unicorn band-aid. It was given to me by my three-year-old friend Pearl, for good luck. Dr. Kirkwood looked at it, then put it in the pocket of her scrubs. I woke up with it taped so securely to my left arm that it is not coming off any time soon, at least not without a bunch of hair. I’m thinking it’s payback for the poster (see the “Dan’s Doctor” link).
Once again, Dr. Kirkwood held my hand as I went unconscious, and she was the first person I saw when I woke up. Her beaming smile told me everything I needed to know about how it went.
Things were so good I bypassed the ICU and moved straight to the Healing Hilton. So dubbed because the view from this room is one of the best I’ve experienced in 15 years of sleeping in San Francisco.
Despite this, there are simply not words to describe the shock and anxiety I felt that first night. I had five tubes coming out of my body: one in my nose which snaked down to drain fluid from my stomach, two coming out my side draining fluid from the suture points inside my belly, a feeding tube directly into my intestine that for the next several days would hang unattached, and a catheter. And that does not even count the epidural and tangle of IV’s I was connected to.
Although my mouth was dry as a bag of chalk, I was told I was not going to have water or food for 3-5 days. This stark fact, hitting me all at once in the midst of the worst thirst I had ever felt (and still woozy from the anaesthetic), made me tremendously anxious. On top of that I couldn’t take anything to let me sleep. I spent the entire night staring at the clock. The only relief came from the swabs, little sponges on sticks like lollipops, that I could periodically moisten and rub on my lips and tongue.
I can say without exaggeration it was the worst fucking night of my life.
Dan is not receiving visitors today. He’s doing well,but trying to sleep and build his strength.
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!
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. 😉
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.
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.
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.