A Pain in the Neck

This weekend was weird. It started with a death sentence and then Saturday ended with my byline in The New York Times and an outpouring of kind words from friends and strangers. Then on Sunday, my legs went numb and I lost control of everything below my waist. My boyfriend found me in the bathtub, where I’d crawled, and I spent Sunday night at urgent care.

Saturday morning, before I even got out of bed, I was checking my emails and I noticed new lab results were in my Memorial Sloan-Kettering patient portal. I’ve been waiting to see the results from a VIPoma blood test. The VIP hormones produced by my NET tumors are what make me so sick. My theory had been that the antibiotics I’ve been on for the past month were causing the problems. But it’s not. It’s still the cancer. My VIP levels are higher than ever. The PRRT treatment wasn’t magic this time. I’m not going to get better. The tumors are producing more hormones, and they are winning.

I knew I was going to die soon, but I’d just wanted to steal a few more months of wellness.

I had plans to meet my boyfriend and his sister for brunch so I got it together. I feel bad meeting people for the first time in such a diminished state. There’s usually more of me and better. I’m 89 pounds. My face and neck have been riddled with acne ever since I started the minocycline, which I finally finished Saturday. I look gaunt, like I’m haunting my old body. After half of a muffaletta, I headed back to the apartment for some fluids and a good cry. Then my boyfriend came over to my apartment and I cried some more.

Eventually, I got tired of sitting inside and crying and feeling sorry for myself, so we headed out to the Red Hook Regatta at Valentino Pier, picking up my friend and her dog at her art studio and a Newyorkina paleta along the way. We saw another friend there and caught the end of some of the races of the boats people had made to race. Something pale bobbed in the water. We thought it was a dead bloated crab, but my boyfriend, a New Yorker, recognized it as a dead rat. “I love that you can recognize a waterlogged dead rat corpse,” I noted. “Every day I find something else to love about you.”

The boats or the rat made us hungry so we headed to Fairway’s outdoor space to get food. On the way, I found a phone on the ground and picked it up. It was locked. I debated on leaving it once someone retraced their steps, but took it with me in case someone tried to call it. (The owner called and was reunited with the phone within an hour.)

My own phone started buzzing with messages from my writing group, letting me know that my opinion piece in The New York Times Disability section had published! It’s called “Dating While Dying,” and it’s about dating with terminal cancer. I wrote it when I was still feeling better, and when I had just met my boyfriend. I wrote it as as submission for my writing group that formed after Gotham Writers Workshop class taught by one of my friends who wrote an amazing memoir about her own deadly disease. I’ve heard it’s hard to find a good writing group, and I’m fortunate to have such a delightful, diverse, and thoughtful group to provide feedback. I also have a lot of writer friends, who provided feedback and guidance and helped me find a home for my essay.

I woke up on Sunday under my usual pile of cats, though poor Ziggy has a cold so he wheezes a little bit. Lux loves the thought of breakfast so much that he sits on my chest and purrs at the anticipation of breakfast. Lulu is usually curled up at my feet, because she prefers the lunchtime kibble and tries, unsuccessfully, to bury her breakfast every single morning by pawing at the surrounding hardwood floor. My guts were roiling, and I know that they probably won’t get much better than this. I looked at my phone and saw a lot of really positive messages from people about my column.

Instead of sitting at home feeling sorry for myself, I read a lot of really nice and encouraging emails. It sounds like dating sites are going to be inundated with cancer patients now. Good. Feel free to use my opening line. I also got a lot of really nice feedback from friends and even from people I haven’t heard from in awhile. I haven’t had a chance to respond to everyone, but I’ve read almost everything.

I went to the bodega and bought some hard copies of the paper, and the owner took my photo with my byline. Then I headed to the community garden to plant some things in my plot. One of my moonflowers is finally blooming. I went to the store to get pasta and pizza crusts to use my fresh basil.

I decided to take a nap. I felt a twinge in my lower back and some leg weakness. I realized I couldn’t really move my legs and felt short of breath. I started to sweat. I was just so tired. I felt like maybe I lost control of my body. I thought I would call someone but I fell asleep. When I woke up, I knew something was still wrong. I couldn’t feel my legs. I couldn’t move them, and I couldn’t feel them from the outside. I slid to the floor and crawled to the bathroom, leaving my phone behind. As I crawled to the bathroom, something got caught on my bedroom French doors, and I couldn’t figure out what it was until I realized it was my legs that I couldn’t feel, caught in the door.

My boyfriend found me in the bathtub. We had to call EMS to get me down the steps. Ziggy, the pink-nosed tabby, demanded attention from the emergency crew, while Lux snuck up on someone and almost knocked him over. They carried me down the steps and took me to Methodist hospital because my blood pressure was low and they had to take me to the nearest ER and not to Sloan-Kettering. After waiting for about four hours and talking to a doctor, they were going to get me fluids and do some blood tests, but since that’s exactly what they would do at MSKCC, I got them to release me, and we took a car up to Sloan-Kettering. By then I could walk again.

I was kept there overnight and seen by neurology. They think it’s weakness from low potassium. I’m worried my tumors are spreading and pressing on something important. I have an MRI slated for tomorrow.

It’s becoming harder to live without hope of getting better. I’m hoping to stop hydration and electrolytes sooner rather than later and then getting some hospice care to ease the transition.