Whew, that was a helluva ride!

I’m typing this up all blanketed and reclining in a chair I bought a month ago in anticipation. I’m hydrated, well fed, and huh, almost painless! A lot of stuff has happened since the last post over a week ago, so this is a long post.

For those who didn’t already know, to get rid of the tumor in my pancreas, I had my Whipple procedure done on Monday, March 25. I started a Google group for those who asked to be updated. My wonderful partner Melissa used it and FaceBook to give lots of people up to the minute reports of my progress. So I’ll just go over the highlights, and then talk about how unusual my recovering is starting to look.

I was on the table by around 7:30 am. The operation took 12 1/2 hours to complete,from endoscopes to final sewing up. It usually takes less that 8 hours. It took a long time for 3 reasons:

  1. I had a lot of endoscopic biopsies. They poked around and found no masses but did a bunch of samples anyway just to be sure. I mean, if it’s all over the place then why bother opening me up? I was clean so they opened me up.
  2. I’m one of 20% of the population who has a bunch of arteries passing in front of my pancreas instead behind it. Blood in arteries is under pressure so it’s really risky to cut through them. They threaded my pancreas out and pushed arteries aside to get at the parts they wanted to cut out. Even brought in a vascular surgeon to QA the work.
  3. The tumor was wrapped around my portal vein. The portal vein is a really big pipe that moves a lot of blood. They had to cut out part of the vein along with the tumor, and then stretch the vein back together and sew it up. They didn’t need to grab any vein material from anywhere else in my body and they didn’t need to give me any blood either.

Really, I did have the dream team working on me, headed by Dr. Falvio Rocha. I read back through those 3 reasons and shake my head in wonder. They visited me every day while I was in the hospital in my initial recovery, and I learned that because of reason #2 they really had to stop and decide whether they would actually want to do the work. Being a sharp, experienced, and simply kick-ass bunch of surgeons they decided to go for it. They f-ing saved my life for the long term!

I can’t really say much about the early recovery except I think I wasn’t too pissy a patient. My gut hurt even with the epidural block but it never got out of hand. I transitioned off the epidural 3, maybe 4 days later. Then I took Tylenol most of the time with Oxycontin at night so I could sleep. I pushed for half doses of the oxy as soon as I felt I could. By the time I headed home I was only using the Tylenol. Let us pause and give thanks for Tylenol.

Not long after coming out of my purple haze of operation schmutz they had me get up and walk a tiny bit. The next day we were walking around the intensive care unit. By Tuesday night I had completed 2 full laps around the ICU and qualified for transfer out of the ICU and to the room where I completed my hospital stay.

I walked every chance I could get. This is a key activity to prompt healing and proper functioning of the guts, particularly the lower intestines. I never needed steadying, even at first. Of course they hovered closely at first, but I’m pretty sure they stopped bothering after my first day in the regular hospital room. My partner accompanied me whenever she was there, and soon it was clear that I was classifiable as “independent”, free to get out of bed and walk any time I pleased, so I did. If I couldn’t get t sleep I would be up and walking. 3 am is a great time to look over the city from the 15th floor. The nurses showed me a great little patio on the 7th floor where I was able to soak in some sunlight and hide out from the breeze. It was cool because the flight path to SeaTac airport was directly between the sun and me, so I got the experience of feeling exactly how fast they were going by the flash of their shadows as they went by.

I encountered one complication. I have a drain for fluids around my re-attached pancreas and the first one did not drain very well. I was bloated. Nothing was coming out. So they ran a CT scan and reset the drain with a new one. The new one works great, but I got an infection and was put on antibiotics and another 2 days were added to my hospital stay just to be sure. Fine with me, I just kept walking.

Here comes the unusual recovery part. I’ve been healing really fast. I was up and independent before most expected, and certainly compared to the other Whipple patients on my floor I was miles ahead of them. Compared to most of the survivors on the most useful Whipple support group on FaceBook, I am miles ahead of them too. Maybe it’s because I figured out how to work around the pains without straining anything. Maybe it was because I religiously sucked on a little device that measured my lung capacity (2500ml of suckage by the time I left, and I could hold it there for 2-3 seconds). Maybe because of all the walking told my guts that they shouldn’t give up. Maybe because I just do not have time to waste not drinking in this juicy mess called life, and I was ready to get going to the next stage.

Oh, and my biopsies and lab work all came back. No cancer. None in the lymph nodes, none anywhere except of course the tumor in the head of the pancreas. My oncologist, Dr. Piccozi came by to tell me that. His baseball analogy is that we are now set up to score.

There were a bunch of criteria that I had to pass through before being released. They were all up on a dry erase placard visible from bed, and one of nurses titled it “Geoff’s Escape Plan”. Each criterion showed how important the little things are in our lives and how precious it is to be able to do them without thinking. Stuff like passing gas, walking unassisted, urinating, eating enough liquids and then eating enough soft foods, and the ultimate goal – pooping. I guess I had one extra goal which was to get my white blood cell count to below “10” which meant my drain infection was under control.

I left the hospital on Wednesday, only 2 days after the boilerplate 7 day estimate. I insisted on walking out of the hospital. The nurses were totally behind me on that. I asked the poor guy who was supposed to wheel me out to use his wheelchair to carry the glorious flower arrangement that my team at work sent me and my bag of electronics.

Melissa took me home, where I immediately picked up my wallet and went to the pharmacy to fill the list of drugs I needed, then back home. Again, based on normal recoveries I was not expected to do stairs right away. I did them anyway. Not breaking any speed records, but it really wasn’t a biggie for me. We prepared the lounge chair with blankets and side tables. I set up all my chargers and Melissa took over about an hour in, because I kinda ran out of gas and sunk gratefully into my chair.

Our pups were delighted to see me and respected my strongly expressed wishes to not be jumped on. Poor guys don’t understand why I haven’t taken them for walkies yet. I don’t think they quite believe me when I promise to start doing it next week, but our pack is together again, and they have their big monkey boy back for morning snuggles at least.

Every day I feel better. Every morning I wake up and something else stopped hurting. At first I couldn’t cough without a huge pain from the incision. Now I can actually blow my nose. I can touch the ground, even if I don’t want to stay down there for long yet. I’m able to do many things for myself, like figure out that the pups had knocked the plug out of the wall for my computer monitors and desktop accessories.

And drugs, drugs, drugs. I’m taking:

  • Antibiotics 2x per day
  • Aspirin 1x per day
  • Miralax daily (to keep things moving)
  • My regular daily meds
  • Prilosec 1x per day (apparently forever since I am now at risk for ulcers now)
  • Tylenol for pain as needed (Oxycontin? Meh, fuggit)

…and this stuff….

Enzymes from the planet CREON

You are looking at a $1000 bottle of medication. Specifically 3 digestive enzymes that my pancreas will hopefully resume producing in the coming weeks. You can get the enzymes online for like $30 a bottle but none of them are configured to get those enzymes past the low pH stomach zone. Exposing some of those enzymes to stomach acid renders them useless. I really need them delivered intact to my small intestines along with my food to help break down fats, certain proteins, and other stuff. Creon is the brand name for those enzymes packed into varied size granules, all coated with something that gets them past the kill zone and into the small intestines where they belong.

I have to take one of these pills with any meal that is substantial. If I don’t then most of the food will just pass through, and if I never use it I could become severely malnourished, even while stuffing my face. Blech. I’m told that it is likely I won’t have to take it forever though, that my pancreas should be able to pick up the load once it is finished reintegrating. I shall meditate on that to happen.

So here I am, writing in comfort.My incision is still itchy and I still get the occasional twinge of pain. I get tired pretty easily and use the lounging chair a lot, for surfing, napping, and now for blogging. I’m being very careful not to lift anything more than 10 lbs and to do nothing that makes my incision hurt.

I also still have a drain coming out of my side which I need to flush twice a day, and clean up and re-bandage every 2 days. It’s still putting around 70cc of ahem, fluid into a bag, which I measure and empty twice a day. It’s not really gross at all. It doesn’t stink, and the amount coming out is slowly dropping. The most annoying thing is that I sometimes forget it has to go with me and gives me a little tug when I go off without it. I’ve taped the tube in two places below the exit so nothing get jostled that shouldn’t be jostled. I keep that until my follow up visit in 2 weeks, back at the hospital.

This was a long post so in closing I’ll just say this: Creon is remarkable technology but shit dudes, $10 per dose? I might not need it for long but there are plenty of people out there who are deciding whether to pay their rent or get this stuff to survive. How many examples do we need of drugs that are critical for peoples’ long term health that are unaffordable? Are we really just trying to kill them off? That is certainly what our medical payments “system” is telling us.