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.
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….

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.