A Pain in the Neck

I am supposed to leave for California tomorrow. I had to cancel because I am too sick. I tried to make the best of my disappointment, so we scheduled a staycation at Dream Hotel in the Meatpacking District. Sloan-Kettering was really helpful in arranging hydration so I can live a few days without my Mediport and swim and be a somewhat normal person for a few days. I took today and tomorrow off. I have a facial.

We got a notification that the pool, the whole reason I am going, will close at 5. I called and explained I am dying, but the manager initially said that everything is outlined in the rules and that they can’t refund me for today, so we have to go anyway. It re-opens at 8 pm. I was really disappointed that they wouldn’t let me cancel but a friend called on my behalf, and another helpful person there arranged for me to go swimming at the hotel next door during the event. We’re on our way there now and will arrive a bit after 5, which is why I was so upset at the timing. I got my Mediport de-accessed and am excited to be a normal person for a few days. I still have to go in for hydration tomorrow at MSKCC. I got a facial and look a little bit more like myself without the antibiotics acne.

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.

For the past few weeks, I’ve been uncertain what to plan for: living or dying. I’ve been hedging my bets on both, trying to wrap up some loose ends while also making a lot of plans for when I would feel better. It’s been confusing, I’m sure, to see from the outside. Am I dying or getting better? Truthfully, I had hoped to get better for a little bit before dying.

Today my VIP hormone levels came back. The VIP hormones produced by my tumors are what make me so sick. They are higher than ever. This means that the PRRT wasn’t magic this time. It’s not the antibiotics that are making me so sick. The cancer is still making me sick.

I don’t know how much time I have left. I don’t want to live on IV fluids and electrolytes anymore, and I plan on stopping those next week. I had optimistically planned a short vacation I still might take when I thought I might be better soon. I would like to cobble together a plan so I can take my vacation.

I have so many boring logistical things to do.

I was going to do some sort of living wake like someone I knew in Columbus had done maybe the weekend after Labor Day. It’s like a going-away party but more permanent.

This whole year has been a long goodbye. I’m sorry if I didn’t get a chance to say goodbye to you before now.

I don’t feel like talking to anyone right now. I feel really terrible but when my mom started talking about trusting in God and how He knows what He is doing, I had to hang up. I can’t hear it. I apologized and told her I would talk to her another time. I need to just sit and be.

I suppose everyone isn’t trying to kill me. The cats. The cats have been trying to kill me with their urine and chewing through my IV.

Then I ran out of potassium earlier this week and I’ve been trying to get some since, and I still don’t really have any. It’s to keep me out of the hospital and to keep my heart from getting messed up. I promised, when I was released from the hospital, to keep up with my potassium, but I haven’t had a blood test since last week (when it was still good) and I’ve been unsuccessfully trying to get some from CVS since Monday, when I started to run out.

The other night, I was so tired from lack of potassium and just exhausted from weeks of antibiotics, I was resigned to die from lack of potassium if it was my time. I arrived at CVS when the pharmacy had closed and couldn’t get some potassium in pill form to tide me over. I felt defeated. When I got the potassium yesterday, initially I thought things were OK. The prescribing doctor had asked if the pills I take say K-Tab and I said no. These say K-Tab and they’re coated and my body isn’t absorbing much of anything at all these days. I take the pills and they don’t dissolve. CVS still doesn’t have my liquid potassium. They don’t know when it will come in.

Today I don’t feel as defeated and I don’t feel like dying just because my insurance company is weird about potassium refills.

I just called and said I want to come in for IV potassium. I need the hateful liquid potassium. I need potassium pills that dissolve. I still have a tiny hope in my heart (or maybe it’s just abnormal rhythm from low potassium) that I can wring a few quality months out of my life, and I’m not quite ready to die of low potassium.

I’m so tired, I feel like I could fall asleep at this bus stop. Be careful what you wish for: looking at the last half dose of my potassium drink this morning, I could barely stomach it. I had emailed for a refill and called again today, but CVS won’t have any until tomorrow. In the meantime, I took all the potassium pills to keep me going through the day.

An electrical hiss woke me up this morning. Saline puddled around my IV pole. Liquid had soaked into an extension cord next to my bed that created small pops of electricity and heat. As I’ve learned from various crises over the years, I’m the type of person who freezes up in emergencies and wishes someone would do something. “Uh-oh,” I said, as saline leaked across the floor and the electrical pops continued.

I clipped my IV closed, but it was obviously the electrical extension that was the danger to killing us all, including whichever cat had decided to chew through the IV to create the leak. We unplugged the extension cord from the wall, and the hissing stopped, and once it cooled down, it went into the garbage.

My boyfriend is also a Libra, but I say he’s too organized and calm and must secretly be a Virgo. (I don’t set much store by astrology, but I’ve found this statement I read to be true of most Virgos: If there’s an emergency, you can run up to a Virgo and say, “Help, my house is on fire and my children are inside!” they’ll calmly respond, “Where do you keep your ladder?” They’re cool under pressure and always have the most practical response, and they’ve often solved a problem before I’ve even had time to panic.) As we mopped up puddles of saline from the floor, he started laughing, and that was the best response to have.

I just want a dull day.

I got most of my IV fluids in today. I took some potassium but then felt very lightheaded, and I think it might be because, knock on wood, I’m starting to feel a little bit better and maybe the potassium was too much. I’m still far from better, but I’m hopeful that once I am done with these antibiotics, I can resume a normal life for at least a month, after the infection stole a month.

Lulu plots.

Now that Ziggy tried to kill me on Saturday, and I suspect Lux was behind this morning’s assassination attempt, it’s up to Lulu to finish the job. She is the one I fear the most, as she seems the sweetest and is probably the most devious.

One thing that I’m taking away from this: I can no longer cheat the system and do my IVs early in the morning and lazily go back to bed, even if it means three to four hours of my day are eaten up. I have to be vigilant and awake to do the hydration to make sure the cats don’t chew on the IV. I’m not sure what was so tempting to the cat this morning, but it could have ended very badly with that extension cord. Hopefully, I’ll be done with this extra hydration next week.

Until then, I’ll keep my eyes open and my Libra/Virgos close.

This morning, I awoke in a puddle of bodily fluids. They weren’t my own.

Is that better or worse?

Ziggy had urinary blockages on and off for months this past March, April, and May, and I thought the worst was behind us. Last night, however, he was snuggling with me and peed on me—and my MediPort, which remains accessed for daily hydration while I slog through the rest of these antibiotics. Eight more days. And then who knows?

I contacted the home nurse, who is off on the weekends, and she told me to go to urgent care to have my dressing changed. First, I had to shower and drape all my furniture with cloth and protective pads in case Ziggy is leaking. Then I headed to urgent care. The nurse said she thought she’d heard it all when I said, “My sick cat peed on my MediPort.”

I am back from urgent care now. Ziggy is going to see his doctor at 1 pm. I think the doctor is going to recommend cutting his penis off. Poor Zigs. He’s wandering around the apartment now, oblivious.

If the pee infected my MediPort, I’ll know if I spike a fever.

We await our fates.

While I wait for Ziggy’s appointment, I put on a mud mask because the antibiotics, in addition to the usual litany of indignities, are also causing my chest, neck, back, and face to break out. Earlier this week, I had a day of beauty and a blow-out, which helped me get a little bit of the post-hospital ick out of my system. I look good as a lady of leisure.

Everyone keeps telling me to take it easy. I hate taking it easy. I’ve watched a few TV shows. I’ve ordered takeout a few times.

Yesterday, I ran out of painkillers for my liver pain and so I had to go into MSKCC on 53rd and 3rd Streets. Today I have to go to people and cat doctors. Even when I want to take it easy, I can’t.

Hopefully, I can just make it through the next week as uneventfully as possible.

A few years ago, when I was recovering from my Whipple procedure, a friend got me Tommy Lee’s autobiography, Tommyland. When it comes to mortality, I usually think about Lee’s bandmate Nikki Sixx and how if I lead a life more virtuous than that of the Mötley Crüe bassist, I too will see the bright light of the afterlife when my time comes. Recently, however, my friend and I were talking about Tommy Lee and the Cameo service, where you can pay to have celebs send personalized messages.

I’m pretty gullible and unsuspecting and easily surprised. For example, I knew about my surprise birthday party a few years ago because my ex told me about it during an argument so I had to act surprised when it happened. I’m a terrible actor, but the thing is, I’m still so unsuspecting, that I was still kind of surprised when I arrived to the party. Usually surprises fall apart at the last minute, when someone who has to get you someplace starts acting weird.

On Thursday, Memorial Sloan-Kettering Cancer Center released me just in time to meet my friends from out of town for a concert we’d planned to attend before I was so sick. I’m really grateful and lucky that once again, they worked so hard to get me out for something important to me.

Fact: If more than two Ohioans assemble, we must identify ourselves in Ohio apparel.

I had a great weekend. (Again, if I could get my body to stop trying to kill me, things would be perfect.) On Friday, my friend who was visiting from Ohio went to dinner with me and my boyfriend then we met up with another friend to see her friend’s band someplace close to my apartment. My Ohio friend was acting a little weird, insisting that we had to go someplace quieter. We walked to a nearby place with a big patio and met up with my friends visiting from Boston and another friend and some of their friends, and she pulled out her phone and said I had to watch something.

Tommy Lee appeared on her phone, and he said my name. He seemed deeply disappointed at my cancer diagnosis, wished me better health, gave a shout out to my cat, and said I had to drink water every time I saw fire. (This last thing was in reference to a viewing of The Dirt my friend and I had at his apartment, where we decided we should all drink whenever we saw sex, drugs, or fire. We didn’t realize there would be so much unexpected fire. We deeply regretted the fire rule the next day.) I’m not sure what my reaction video looks like, but I’m mostly in shock and laughing. About 15–20 of my friends had chipped in to get me a get well message from Tommy Lee. It looks like the secret Facebook group messages were as entertaining as the video itself. I feel like I haven’t even had time to thank everyone. Thank you all from the bottom of my Mötley Crüe-loving heart.

In addition to the message, I came home to a box from a high school friend containing a plush tabby and a coloring book. The plush tabby was soon joined by the real tabbies in the Amazon box. I also got another cat coloring book from another friend this weekend too! Plenty of coloring on the horizon.

The next day, we got brunch and my friend headed back to Ohio, and six of us headed to Governor’s Island. On our way there, we ran into someone else we knew. We strolled around and ate frozen treats before heading into Manhattan to meet another friend and her daughter and her friend. We chose The Smith but I wished we’d chosen another restaurant because The Smith isn’t very good with birthdays, and they unceremoniously put down a cake with a candle with the other desserts. Oh, well. It was still fun. The next day I had a buttery French brunch and more friend time.

I’ve been trying to rally, and I went to one more concert last night. I’m tired of being sick, but today I kind of hit a wall, physically. Everyone keeps telling me to take it easy, and I’m finally tired enough to do so. My blood sugar was weird yesterday and it felt off this morning, and I sometimes get really lightheaded.

I’m done resisting the doctors on the antibiotic front. Saying no makes me feel like I have some control, but I really have to finish this round. Eleven more days after today. Now that I’ve accepted it emotionally though, I’m sometimes not sure if I can physically do this slog through 11 more days. I’m so diminished from being sick since May, and then I’ve been sick from antibiotics for two weeks, and I have about two more weeks ahead of me. Sometimes, I feel like I’m going to physically give out before I cross this finish line.

Tomorrow, I have a check-in at MSKCC, and I’m always worried I’ll get whisked away to the hospital. I’m also getting my hormone levels checked, and that could be an indication as to whether this last treatment worked. I want to know and I don’t want to know. I hope it’s the antibiotics that are making me so sick, because then I might feel better one day.

Until then, I’ll just watch my Tommy Lee video for inspiration.

I was released from the hospital yesterday. They wanted to do it this morning, but I have friends in town and I had a concert ticket for last night, so they helped to get me out. It reminded me of last year, when my mom was in town and I had a blood infection, and the hospital worked really hard to get me out for her final night in town so I could have Mother’s Day dinner with her.

So I was released just in time to meet up with my friends in town from Boston and Ohio to see the Peter Murphy show. I was wheeled out holding the cheerful vase of sunflowers a friend delivered that morning.

I’m out! But I still have a lot of things to do to keep me out of the hospital.

One of the things that could keep me out of the hospital is a potassium drink that is the worst thing I’ve ever tasted. The instructions said 15 ml three times a day, but then the doctor called to tell me it’s 60 ml a day. I sit here sadly slumped at a table, drinking them like sad shots, with Los Lobos’ “Estoy Sentando Aquí” as my soundtrack.

It tastes like all the salt from all the tears shed in sorrows throughout the world. It’s vile, like the bitterness of every defeat you’ve ever experienced. It’s as if you’re forced to fill your mouth with the names of everyone who has ever wronged you and then swallow their cursed names whole.

This is the worst thing in the world.

I also have to do daily IVs, something I vowed I’d never do again. But in the interest of keeping me out of the hospital, I have to do it. Last time, a few months turned into five months, and that haunts me.

Right now, I’m heading to my community garden to hang out with some of my favorite people.

I’m making this update in the middle of the night from the hospital. I was in too dark of a place before to write anything. I’m supposed to be home by now, but they are reluctant to let me go, since the antibiotics make me so sick, it’s hard to keep up with my electrolyte replacements. My reassurances that I’ve felt this terrible for at least the past month and I should be able to slog through several more weeks doesn’t seem to ease their minds.

I have friends coming to town for plans I made when I thought I’d be done with the PRRT and on the mend. Instead my possibly superinfected embolization spot hurts, and the antibiotics give me the exact same symptoms as the tumors. I just need to get through the next few weeks of antibiotics, but it’s an uphill battle.

I’m just so tired of feeling so sick all the time. I can do it for a few more weeks, but I’d like to do it at home instead of here. Or I’d at least like to get out this weekend. I’ll leave and come back. I have no one to bargain with. I need my body to just give in just a little bit instead of being infected and uncooperative. I have put up with its melodramatic dying act for months now and I’m tired of this nonsense.

I’ve had a hard time talking to my mom for the past few days, because I’ve been in a terrible mood and I don’t know what to say to her sometimes. She is going through a lot but she’s generally a very upbeat person. My mom sent me an email today with a few heart emojis, meaning that she specifically logged into her Gmail, which she rarely does, just to send me those little hearts to cheer me up. It’s one of those things moms do that seem small but that are actually really big.

The other day, one of the hospital’s social workers stopped by because I’ve been depressed. Your body trying to kill you in your early 40s in a humiliating fashion will get you down. We talked about mortality. She said a lot of people rail and ask why this happens to them and asked me why I wasn’t doing that. I didn’t really have an answer. I think maybe I already did the why-me route. It’s probably in this blog somewhere.

Pressed for an answer, I still don’t have one. I guess I assume we all have terrible things happen and it’s just a matter of what terrible things you end up with. In the grand scheme of things, this is bad, but if being sick and maybe dying pretty young of cancer is it, then it’s not that bad. A lot of people in my life have gone through some terrible things. We’ve all gone through some awful things, right?

But this has kind of been it for me. Everything else in my life has been really lucky. I’ve had good luck with jobs and coworkers and my career and my friends. Things often fall into place for me. Over the years, bitter people have seemed jealous or annoyed that maybe I seem to come by good things so easily, so maybe my cancer helps even it out for them. People who go through life thinking that the world owes them something will never be happy though, so I think even my cancer doesn’t provide them with the kind of justice they’d like.

Some of the bad things that have happened recently have happened to me: the loss in February, the illness. I’ve had to actively make some of the good things happen. I was also very proactively holding on to some of the things in my life that were making it bad for many years, and for the past year, I’ve been so free and happy. (One of the tabloids that a friend dropped off proclaimed that Jennifer Garner has been having the best year of her life. Me too! I thought. I’m so happy for us, for me and for Jen. We deserve to be happy.)

The blood infection was very bad luck. Two types of cancer is bad luck. But I’m still very lucky. Today my mom sent me the heart emojis. My boyfriend cheered me up and brought me a fresh hoodie, and we looked at fun things to do when I’m finally out of here. My catgodmother was able to stay with the cats during this unexpected turn of events and she got keys for my friend who is visiting from Ohio. I know my New York friends are going to take care of my Ohio friend tomorrow and let her in and I don’t have to worry about anything. Another friend left flowers at my apartment while another was going to drop off food, and my network of friends have all been in touch and have been making things easy for me, taking care of the animals and the apartment and one another. People are dropping things off and offering to help so much I can’t even accept it all.

I just want to get out of here to enjoy everything. Or at least have the weekend. I’ll be miserable for a few weeks if I can just have a little bit of time and then the time after the antibiotics.

In the end, I think I just told the social worker that I’m still pretty lucky.