A Pain in the Neck

I have currently spent most of 2018 in the hospital. People have asked me why, and there’s really no delicate way to put it: My body is trying to poop itself to death. It is so ridiculous that I can’t even be embarrassed about it. After everything, is this how it ends?

A bit before Christmas, I started feeling sick and I emailed my doctor about getting more potassium supplements. They responded that I would be OK, but by New Year’s, I was also throwing up on a regular basis and was taking anti-nausea medication to just make it through the days without being sick. When I went to the doctor on January 2, I suspected I might be admitted to the hospital but I was still a little unprepared when I was admitted to urgent care and then the hospital for four days. My potassium was 1.7 and 3.5 is the minimum safe level. Extremely low levels of potassium can put your heart rhythm off, and my EKG indicated this was happening. Things like cleaning or even walking up the steps from the train made me exhausted, and I felt weak all the time.

During my hospital stay, I was pumped full of potassium. I had a scan of my liver so the doctors could see if they should do an immediate embolization of the tumors,  but it turns out there is still not much going on in the liver. It is the pancreas tumor that is producing a hormone that I think is called VIP. This VIP status causes everything to rush past the velvet ropes of my digestive tract and create mayhem. I can’t hang on to most nutrients.

I was released the Friday after New Year’s. I spent three nights back at home before I returned to the doctor’s office for a fluid check. As I left the house for work that Monday, I had an inkling it might be the last time for a while. As I shut the door, saying goodbye to the cats, I worried it would be the last time I would ever see them. At times, I still do worry that I might never see them again. I miss them. I want someone to put ties on two of the kittens and bring them in as visiting business associates. I want to put the other cat in her Halloween granny outfit and sneak her in as my grandmother.

The doctors can’t release me until I start feeling better and can retain fluids. For that to happen, the tumor needs to stop producing the hormone. The tumor can’t be operated on, because it is too close to an artery, so radiation is the only option. I was told last week I could start feeling better by this week. However, on Monday, one of the radiation doctors said that I might not feel better until after the radiation ends, or even a few weeks after. My radiation stops January 29.

I didn’t realize I would possibly be here for a month. My mom is coming to see me. I was worried I wouldn’t see her again. I’m worried that a bunch of lasts happened—my last birthday, my last summer, my last time seeing some people—and I don’t know yet. I had been operating under the assumption I would get better, but one day I won’t. How do you know when it’s going to be the end?

There are worse things than your body trying to poop itself to death. I have learned in the past few weeks there are more humiliating things than wearing a diaper at age 40. It is worse when you have to collect your violently expelled bodily fluids in plastic bins and then call someone to empty them and then clean up as best you can for the benefit of your roommate. It is even worse when you heart monitor falls out of your pocket on your foot every night while you rearrange your plastic waste bins. It is much worse when your ill-fitting hospital gown dips into your full urine collector but a small mercy that it has not soaked up anything from the stool collector or from your neighbor’s bin.

For every noble version of dying and being brave in the face of illness, there are more grim realities like this. I don’t talk about it much, because it’s pretty gross. But once you start wearing adult diapers, it’s hard to feel much more embarrassed. Or so I thought, until my bodily fluids collector went missing on Sunday. I didn’t tell anyone, partially because I couldn’t bring myself to launch an investigation or even figure out how to initiate a conversation about such a mystery. “Has anyone seen my poop vessel?” I stayed quiet until the doctors and nurses remarked the next day that things were looking better for me and I had to break the news that nothing was recorded.

I spend a lot of time staring off into space, calculating the best time to go to the restroom. I spend less time (but too much time) looking up success and failure rates for radiation for neuroendocrine tumors.

I braved a lot of things that tested the boundaries of my squeamishness and survived. In roughly a day and a half, I had a new IV put in, blood taken from an artery, a neck catheter put in and removed, and a PICC line put in, and had several injections of lidocaine.

I have been trying to remain upbeat, but I’m a little bit scared. A visitor told me that last week, when I was on a liquid diet, she worried I would’t make it to the bathroom and back on my own. Today she said my cheeks look fuller and I look a lot better. I can eat solid foods, though I’m still not digesting very well. I don’t have to wear the heart monitor anymore. I’m going to try to wear pajamas instead of these drafty hospital gowns. I have a new room with a nice view from the bed. I have plenty of visitors and I have a lot to keep me busy. I have a lot, period.