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 …..