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.
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 …..

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s good to be home.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Kaki reports:

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

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

Hey folks, Calum here.

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

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

Here’s what we know so far:

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

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

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.

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.