For the love of all that is holy and decent! I’ve been up part of damn near every night for the past 5 years with abdominal pain and it turns out that for at least the past year and a half I could have been sleeping pain-free, like a fat and full walrus!
Medical dictionaries define pancreatitis as, “an inflammation of the pancreas marked by pain so severe that the pain’s pain has pain. Patients asked to rate their pain on a scale of 1 to 10 often respond by grabbing the questioner’s shirt collar and begging for morphine. Pressed for a number the patient will reply ‘ten fucking thousand!’” After spending two weeks in the fall of 2006 hospitalized because of it --much of that time in intensive care-- I won’t argue with that definition. It’s also notoriously hard to shake and flare-ups are common. I felt lucky because, even though I was in some pain for a few months after my hospitalization, my life pretty quickly got back to normal (except that I developed diabetes as a result of my malfunctioning pancreas).
However, while I was minding my own business, a pseudo-cyst –basically a sac of fluid stuck to the pancreas’ tail like a bubble gum bubble on a child’s lips-- was growing. First doctors tried to drain it by sticking a needle through my side and popping the bubble, which they located by doing the procedure while CT scanning my abdomen. The technicians and I, all new to this, followed the needle’s progress on the screen and were I’m sure a great help guiding it home. You’ve probably guessed by now that that didn’t work. The cyst rallied, and an MRI a few months later caught it in the act of re-inflating.
The next step was to try to address the cause of the cysts. The duct that drains my pancreas into my upper intestine was too small. Fluid was getting trapped in my pancreas, eventually blowing out the back when the pressure got too great. So I was off to HCMC for a procedure called an ERCP. An ERCP involves a doctor shoving a stent though the mouth, down the throat, through the stomach and into the pancreatic duct. Usually the procedure is an outpatient one but because my pancreas resents being looked at, and really hates being touched in even the gentlest manner, it always flared up. As a result, I was hospitalized for a few days after each of my five ERCPs. Yes, five. You would be right to ask why I let them do this to me 5 times. The answer is that those procedures were the least invasive fixes available and before I had my first the doctor said we’d need to do a few before we would see any results. So we would do one, my pancreas would flare up, I’d spend a few days hospitalized and then a month at home recuperating. And then I’d go back and do it all over again. The fifth was the last, though, and after it didn’t fix me I went in search of another answer.
My search led me to the Mayo Clinic, where a GI doctor, after first assuring me that his colleague at HCMC had handled my case appropriately and that the five ERCPs were a reasonable first course of action, wasted no time referring me to a surgeon. “Time to break out the big guns.” Since my pancreatic duct’s most severe stricture was towards the tail, he thought a surgeon might be able to chop the end of my pancreas off. If it worked, the pancreas left behind would be as healthy as yours. Guess what? The surgeon also recommended surgery. (Half the battle as a patient is picking the right person to see. A chiropractor will recommend an adjustment, an ERCP guy will suggest an ERCP, a dentist will do a root canal, and a surgeon will fairly salivate at the idea of cutting you from stem to stern.) This was in December of 2009 and the baby we were going to adopt was due in February. The surgeon promised I’d be recovered by then, so I had surgery. The surgeon hoped to cut out the tail of my pancreas laparoscopically, something he is apparently world-famous for being able to do. But after poking five holes in my stomach and looking around he realized he was going to have to open me up, which he did with a gusto, cutting me from under my right armpit all the way across my abdomen and around my left side to my back. Once in, he found my pancreas was dead from its midpoint to its tail. It was all nasty (I’m going to use some medical terms here. Deal with it.) and stuck to my spleen and liver and every other goddamned thing it could stick to. So they dissected my pancreas, cauterized it shut, pulled the dead half off my liver, grabbed my spleen, and got the hell out of there.
I was in the hospital for about a week after surgery and then came home for a long recuperation. I got better and eventually felt almost well, but my pain never completely went away. That led me back to Mayo for more tests and the GI doctor who, unable to find anything wrong, told me to take anti-oxidant vitamins. Luckily my family doctor trusted that I was in a lot of pain- he kept me supplied with pain meds (there were a few times I needed a refill and he was not in the office. Those times invariably led to demoralizing encounters with doctors who, unfamiliar with my situation, assumed I was a drug abuser—one even went so far as to diagnose me as such on my medical record without telling me. When I found out, I complained the clinic manager who told me he was only looking out for my safety. I felt like warning him to look out for his safety but, you know, I don’t do that kind of thing. My regular doctor un-diagnosed me as soon as he got back from vacation.), always urging me to take as few as possible and to keep looking for more long-term answers. Which leads me to my recent trip back to Mayo, determined not to take “Vitamins” for an answer. That time the GI doctor, still unable to find anything wrong, said, “I bet you have nerve damage from all these surgeries. Maybe you should go to the pain clinic. They can give you a shot and numb your abdominal wall. If that helps, we’ll know that was the problem.” Fucking doctors.
Guess what? Yesterday I had the shot-- which was cortisone and something else I don’t remember. It will take a couple days to know if that worked. But because the doctor hit something acutely painful with the needle I’m guessing that pain will numb when the medicine begins working. Also, because my pancreas looks perfectly healthy, the doctor lifted the ban on alcohol that had been imposed on me since 2006!
So it turns out that the past year and a half or so I probably could’ve been pain free. But then I wouldn’t have had those painkillers. And I suppose my blog would have been less funny. We’ll see.
My big surgery lasted about 10 hours and my lovely wife spent most of that time sitting in an uncomfortable chair in the corner of what would eventually be my room. She didn’t want to be away if I needed her. When the nurses finally wheeled me to the room after surgery she met us outside the door. Stacy and I were alone in the hallway for a moment while the nurses went in to ready the bed. I was in so much pain, I literally could barely see. I can’t imagine how hard something like that must be to go through alone because the sight of Stacy standing there, in charge (I could see in her body language that she already knew my nurses names and shifts and my doctor’s plan for treating my pain.) comforted me greatly. She probably asked how I was, etc, but as I remember it the first thing she said, as excitement spread across her face, was, “The social worker called. We know the sex of the baby.”
I was thrilled and said as much I think. I also remember that the nurses were caught up in the excitement, too.
Eventually Stacy said something like, “Good. Now that you know I can start making calls.”
She had patiently sat on that thrilling news all day because she thought I should be the next to know. Wouldn’t you have been tempted to get on your phone and start telling people, knowing how boring sitting there all day must’ve been?
I just couldn’t write this without saying something about how lucky I am to have Stacy to help me through it. Nor can I ignore her mom, whose help with our kids and dogs and house has been invaluable.
End of Chapter (I hope)