A Pain in the Neck

After the doctor had tried the debulking surgery but then discovered too many tumors and closed me back up, I kept falling asleep from medication and exhaustion. Each time, I woke up, I’d have to remember that the surgery didn’t go well. “Your tumors are still all there,” I had to tell myself. “There is nothing you can do.”

It seemed so surreal to be sitting here in recovery with no hope of getting better. I had to keep reminding myself that I wasn’t leaving to go home, but to hospice. I’d hopefully crossed out hospice on my calendar when I scheduled my surgery.

The surgery revealed lots of small tumors threaded throughout my bowels. That explains why my symptoms were so terrible, but the scans didn’t show much. The tumors had been hiding.

“You can’t open her back up and take them out?” a friend asked this morning as a last resort.

No. It’s not an option.

Today was hard. Today I was more cognizant and had to admit defeat. Today, on my way to hospice, I stopped by and visited the cats and my apartment for the very last time. (Cats are allowed at the facility but cats don’t like to travel.) I hurriedly packed some clothes and said goodbye to three very specific pieces of my heart. In between this, I sobbed at my boyfriend.

I don’t like being like this, so sad. On my way to the hospital, when I was optimistic about the surgery, I chattered away about fun stuff I’d done while doing chemo or going through treatment. As we passed by Lincoln Center’s film center, I recalled that I’d spent all day watching a season of Breaking Bad leading up to the premiere of the series’ last season and how fortunate I was to be bald to be Walter White for Halloween. I’ve tried to have fun no matter what and now all I can do is cry, particularly at my boyfriend, who I will hate leaving. I would have done anything for a few more months with him, and I hate that I have to go. I wanted forever and I should have been more specific, because my forever was only six months. I could have an abdomen full of tumors and be stapled together while being told that I don’t have very long to live and he smiles at me and I feel like the luckiest person in the world. All he has is a gaunt lady who looks at him and bursts into tears.

I don’t want him to remember me this way. I don’t want anyone to remember me like this.

I would like to go sooner rather than later, but I’m afraid to pull the trigger and stop the electrolytes and go. It will be quick.  I physically can’t go on much longer. There were times when I didn’t think I would make it during those two weeks until surgery. My body is giving out.

In the end, my heart will stop, but it feels broken now. I don’t want to leave the cats. I don’t want to leave my boyfriend. I don’t want to leave my mom. I don’t want to leave my friends. This is very different than how I felt in May of 2018, when my boyfriend at the time wanted me to die so he could be with his Pilates instructor in London (it worked out for him in the end even though I didn’t die then). Then I didn’t care whether I lived or died because I felt broken. This time, I don’t want to go, and I know that makes me much luckier. My life is so much better than the way it was.

My friends decorated by room with photos. I’ve had a good life. I can’t comprehend that it’s going to stop so soon. How did this happen?

I’ve been taking comfort in everyone’s kind words. I made it to 42, my friend Anne pointed out. “According to Douglas Adams, 42 is the answer to life, the universe, and everything. So nice job getting this far. The enemy’s gate is down.”

My friend Seanan says, “You are the most alive person I know, and I am beyond glad to know you.”

My friend Anna said, “You’ll live on for much longer than you know, in one form or another. You are so loved.”

I’ve received countless messages of love.

I asked my boyfriend what he thought happens after we die. He says you live on in other people’s memories, and I won’t be forgotten.

Still, the end looms close, and I feel like I’m not ready.

Every now and then, the worst thing happens. Yesterday was one of those times. When the surgeon opened me up, he found a lot of tumors that didn’t show up in the scan, so he closed up the incision.

That’s it. I’m done. There is nothing more to be done. We fought hard, but it’s time to go. I am in a lot of pain from the surgery and the tumors; I can feel the tumors cramping. I can’t control my bowels. I am exhausted and have a hard time fixing electrolyte imbalances.

It’s time for hospice. I knew this was an option going in, but I needed to exhaust all my options.

When I woke up from surgery yesterday, I was told the news. My boyfriend and two of my friends were there and my abdomen hurt so I couldn’t react. I still can’t do any gut-wrenching sobs. I am sad, but have to remain somewhat stoic.

I can’t laugh either, and in these situations, it shouldn’t be a problem, but I have the friends that I have, and so that is, thankfully, an issue.

I have a bunch of logistical and practical matters I have been working on, but I’ve wrapped those up, for the most part. I’m going to blow off some things.

Even now, when they talk about stopping the electrolytes and fluids, I hesitate. I still don’t want to die, but it is time. I had a good run.

I submitted Ziggy’s photo to a social media group for fat cats. It hasn’t been approved by the admins, so I’m not sure what this could mean. It’s possible a) he is not “chonky” enough, b) perhaps he’s too handsome, and they think maybe he’s a professional model c) my caption isn’t clever enough and doesn’t use enough umlauts and mention enough of the cutesy cat words, like “peets” or “himb” or “boi.”

Yesterday I was ghosted by a lampshade. Again. Since June of 2018, when my ex moved out, I needed some home decor items, but with my abbreviated timeline, buying new furniture seemed silly. I managed to find a floor lamp on the street, but it has a very specific lampshade that is stained. Last year, I tried to get a free lampshade that someone was giving away on NextDoor. After I rearranged my entire morning to be in Williamsburg, I went to her apartment and called. And called. And called. When I arrived at my train stop, I got a text back that she wasn’t looking at her phone. The first time I was ever ghosted was by a lampshade.

I tried again, and I planned to pick up a lampshade on Sunday in Kip’s Bay. I would be nearby at Rolf’s for the Christmas decor with friends in town. However, when I messaged Lamp Shade to confirm, it had been picked up already. “This is the second time I have been ghosted by a lampshade,” I noted.

Of course, I’m skipping over my big worry. Tomorrow is my debulking surgery. In an attempt to relieve some of my symptoms,  a surgeon is going to try to remove some of the tumors. Three are in my liver, and two are in my bowel. They’re not completely sure if they can get to the bowel tumors. There’s also a pancreas tumor that is inoperable. I have some sort of mammary thing happening, but they don’t think it’s cancer.

It’s not a small surgery. They will reopen my Whipple scar and then cut further down my abdomen. It’s a 30-day recovery.

I’m not afraid of the surgery and the staples and the scars. I’m worried it won’t work. There’s a chance it might work and there’s a chance it might not. Regardless, it’s my last chance. The PRRT didn’t work. It’s doubtful the Keytruda worked.

I was originally planning to go to hospice later this week, and instead, I’m having surgery to try to stay just a little bit longer. My time’s running out. I’m always tired and in pain. I just want a little bit more time.

I took three oxycodone today. I keep falling asleep writing this. I need to get up very early for surgery. Goodnight. See you on the other side of this surgery.

At the regular Thursday night Ladies Night during the spring of 2005, one of my friends waved to me near the dance floor. He smirked and said, “Word on the street is that Josie Rubio was seen buying a Kelly Clarkson CD at Best Buy today.”

Earlier, I had found myself at the Best Buy near my office in Columbus, Ohio, with Breakaway, the latest Kelly Clarkson CD in my hands. I couldn’t possibly buy (or perhaps even find) the CD at one of the cool record stores near the Ohio State campus, and this seemed like a good spot to make an illicit purchase. Until I hear a familiar voice behind me. “Hey, Josie, what are you buying?”

I had forgotten that someone I knew from the goth clubs/nights worked in the automotive stereo department. I sheepishly showed him my Kelly Clarkson CD. He was out at the club that night, and apparently word was spreading about my love of catchy pop tunes.

I love “Since U Been Gone” so I slipped the disc into my car stereo right after I bought it and listened to it on repeat all the way back to work. It’s not even a guilty pleasure. It’s a good song.

Today there is a dance party celebrating its 15-year anniversary and release in November 2004. I remember watching and discussing the video with my former roommate.

I still love that song. In fact, it was one of last summer’s anthems, for obvious reasons. After the breakup, I had a very small Gwen Stefani “Used to Love You” phase of a few weeks, followed by a triumphant return to victory songs. I played “Since U Been Gone” a lot. A lot. My music snob ex would have hated it so I played it even more. I alternated between that song and Icona Pop’s “I Don’t Care.” I listened to the latter on repeat the day we went to the courthouse to dissolve our domestic partnership. I was so happy, the clerk congratulated me.

I was trying to think of my other favorite breakup songs, but I don’t remember most of them. I do know that I played “Ordinary World” by Duran Duran over and over again after my very first breakup at 15. I guess the tone of the song depends on the breakup. That one was definitely a “Since U Been Gone” parting of ways. Happy 15-year-anniversary to one of my favorite breakup anthems. I don’t regret making that purchase at Best Buy.

I was supposed to start dying next week in hospice, but instead, I’m getting surgery. It’s strange. I’m still preparing for death and dealing with a bunch of red tape for everything from cashing out some of my retirement funds to my disability payments. I had nonstop visitors for over a week and instead of a tearful final goodbye, at least this gives us a bye-for-now attitude, hanging hope onto the surgery that may or may not buy me a little bit more time.

There are many worse things than the prospect of too many visitors once you’re in the hospital for surgery and recuperating. I appreciate all the messages I’ve received about visiting, both when I’m in the hospital and after my surgery. I check into the hospital on November 11 and have surgery November 12, then I am in the hospital for four to five days. My mom is coming out to stay with me and take care of me November 20–29.

I’ve been through a similar surgery for my Whipple procedure, though this will be less invasive. Refreshing my memory about that time with old posts, recovery was tough and worse than the stem cell transplant. I spent a lot of time in pain and on pain meds. I also came across an old blog about my unofficial visitors policy when I was in the hospital recovering from my stem cell transplant in 2014, and my attitude then was: “I want to be alone.”

This procedure and the circumstances are much different, of course. I had to be really careful with my immunity after the stem cell transplant. Also, I knew I would live and get better afterwards. I’m aware this might not work or it could hasten hospice and will buy me a small amount of time at best.

However, I’m still the same person I’ve always been. When a few people mentioned to one of my friends that I don’t seem that sick, she compared me to my favorite animal, the cat. She had taken her 20-year-old cat to the vet, who told her that the cat was really sick and in bad shape. She didn’t know how serious the cat’s health problems were or how bad the cat felt. The vet explained that cats don’t always show their pain, and when they do, it’s usually at a point where it’s pretty bad. “Josie’s like a cat,” she said.

At this point I can’t hide how bad I feel sometimes with the pain and dehydration and fatigue.

Also, like a cat, when I am feeling bad, I would like to drag myself under a porch and disappear.

When I am sick, I’m not huge on people visiting me when I’m drugged up and won’t remember things with a bag of my bodily fluids hanging off my bed. I prefer to hang out with people on my terms, when I’m more in control.

The other thing is that I’m actually an introvert. I had a shrink in my 20s who was really into the Briggs-Meyers test, and I always test on the more social side of introvert. I want to be an extrovert and I believe through sheer force of will I have pushed myself to the border of introvert/extrovert. But I’m not naturally “on” and even if you say I don’t have to entertain you, I really feel compelled to do so. I sometimes get a little drained.

I am up for visitors, but, like I said years ago, “’If you happen to be around and want to drop by, that’s OK. But if you plan to come to New York specifically to see me in the hospital, please don’t.” It’s possible I might change my mind but for now, I think I will need some down time too.

I love and appreciate the help, and I will definitely ask for more help if I need it. It is very possible that I will. I would rather just see you, say, poolside than bedside, and I’m hoping I have the chance. I think I have a lot of the caregiving covered. Hopefully see you on the other side of this.

My story, this story, will end the way all of our stories will end: I will die. The end.

How we get there usually isn’t really up to us, but obviously there are choices. Right now, I’m usually in pain from my tumors, and I’m often dehydrated and a little fatigued. I’m definitely tired of the daily IV infusions and having the Mediport accessed all the time. I try to keep up with electrolytes but it’s still a battle. Hospice has been looking more appealing.

I still have things to do that have been keeping me here. Some of them have been fun things: my birthday, my boyfriend’s birthday, hosting a Halloween party, friends in town. Others are painfully boring: Setting up disability logistics, trying to get myself to be declared permanently disabled so I can access my IRA early without penalties, scheduling nurses and IV deliveries with OptionCare, which has become increasingly and noticeably less efficient within the past month.

I feel terrible, but my last scan doesn’t show many tumors. The tumors that I have, however, are aggressive and producing a lot of VIPoma, the hormone that makes me sick. Drugs and octreotide shots don’t even really help much. My body just seems to be wearing out from the stress of being sick. I’m bewildered that such tiny tumors can cause so much pain.

Walter White: Me.

As I mentioned in a recent previous blog, my body has been trying to kill me, on and off, since 2012. Doctors have bought me time since then, but it’s like I’ve been on the run from cancer, first Hodgkin’s lymphoma and then neuroendocrine tumors. It’s relentless in hunting me down. It wants to win. It’s going to win, eventually. I made the analogy of being on the run and now cancer has surrounded me, like the authorities closing in on a criminal on the lam. I have been ready to come out slowly with my hands up and surrender to hospice.

Or am I? I would do anything for even a few months of normalcy. After the tumor board discussed my case, there is one more outside-the-box thing they can try. It might work. It might not. I met with the surgeon on Monday. I have three spots on my liver, one on my pancreas, and two in my bowels. My pancreas tumor is inoperable. It’s too close to a duct and they would do a risky surgery only if it were the only tumor and it could possibly cure me; that’s definitely not the case here. The liver tumors can be lopped off and it’s very likely the bowel tumors can be removed as well, but he won’t know the extent until he gets in there.

I had thought I also have a chest tumor but that wasn’t mentioned, so I am asking about that.

It’s not a small surgery. They would re-open my Whipple incision and then cut even further down. They wouldn’t offer it if there weren’t a chance of working, but there’s a chance it might not work. It won’t be as big of a deal as the Whipple, but it’s a month of recovery.

So it’s up to me.

I’m obviously going to do it. I can either go to hospice in a few weeks or try this. The way I see it, either: 1) I’m going to go into hospice and die within a month, 2) I can try this and it won’t work and I’ll still go into hospice and die, 3) I can try this and feel better for a little bit and then die.

Tony Montana: Also me.

Instead of coming out with my hands up, I feel more like Tony Montana in Scarface with a grenade launcher. When I made this analogy on social media, several friends have promised to have my back. “I love the comparison,” noted one friend. “You need a giant bowl of cocaine like right now.”

For all the tough talk though, I might be saying you need an army to take me, but that’s not quite true at all. Sometimes I feel so tired and weak, I can’t imagine making it to November 12 for my surgery.

And I could always get hit by a bus. People say that sometimes as in a you-never-know way, and then it almost happened yesterday. It wasn’t a bus though. After attending the premiere of Last Christmas with my friend visiting from LA last night, we ordered a car home through an app. Our driver appeared to be tired and we had to locate him half a block away. I rarely pay much attention during rides and so when we were on the FDR, I didn’t notice that we were in a lane heading full speed toward an abandoned car with its hazards on. Luckily my friend noticed, and she screamed for the driver to stop. He stopped just in time, leaving inches between us and the stopped car. The car behind us was inches away from us and luckily swerved in time. The driver also almost went the wrong way down a one-way street close to my apartment but I noticed and stopped him. I feel bad because he almost killed us but it was clear the driver was really tired. I think he shouldn’t have been driving but needed the money. It was sad.

So after all that worry about the surgery, I almost met my end yesterday on the FDR. I think it’s a message from the simulation runner not to speak of the simulation.

I am almost positive I’m going to go through with the surgery, unless they can’t do anything about the other tumor. But you never know: I could get hit by a bus tomorrow. I hope I can buy myself some more time.

A few of my friends and I often posit that this world is clearly a simulation, and we’re some sort of experiment.

My personal theory is that we’re in a jar in some alien teen’s bedroom and his little brother has stolen his science fair experiment and things have gone off the rails. I think the shift happened when the Chicago Cubs won the World Series over the Cleveland Indians. (What sort of dastardly deal did they make to win?)

One of my other friends thinks that there are a series of simulations, and we’re saved in the cloud and entered in various worlds.

Sometimes, I think the simulation is so obvious that the people who are running the situation are just messing with us. How do you explain Vanilla Ice on a quarantined plane from Dubai? It’s like when something ridiculous happens and you realize you’re in a dream. Sean Spicer on Dancing with the Stars? The smoking cockroach?

Maybe we know too much, we worry, while (mostly) joking about our simulation theories.

The other day, one of my friends I went to high school with had a very detailed dream that he was guiding me through the end of my life, but that he woke up in his dream to learned I had died. I spent the day kind of worried I had died and didn’t realize it, like Cary Grant and Constance Bennett in the beginning of Topper.

Then one of my friends got stuck in an elevator, on a high floor, for 10 minutes. “I’m not sure I made it,” she texted.

“We probably both died in some other simulations,” I noted. We went to a seance for fun early last week and the spirits had messages for everyone but us probably because they sensed we were already crossing over into their realm.

Following my crazy theory, I mentioned that maybe you die in another simulation when you have that feeling you’re falling when you’re about to go to sleep. “That’s just you rebooting,” replied my boyfriend.

Sometimes I find myself thinking about my crazy theories for a little too long. A few weeks ago, my hemoglobin was low. I was pale and tired and needed blood. I was always cold.  Am I turning into a vampire? I wondered. Being undead would be better than being just plain dead.

I wondered about my possible vampirism on social media after I slept in the bathtub with my black cat, Lux, after a night of not feeling well. “Depends… was the cat in the tub too?” asked one friend. “This is a very important part of the spell.”

Often we wonder how to get in a better simulation. I need to find one where I don’t have cancer.

Sometimes I find myself planning for the next life. “If I get rebooted into a new simulation, I’ll find you,” I tell my boyfriend. “I’ll find you before I get so sick this time, so you have time to get tired of me.”

I have to remember to avoid some people and situations. I’ll get my neuroendocrine tumor spot checked out earlier. Will Ziggy my cat still be a cat? I have a lot of questions, then I remember that I’m not actually in an episode of Black Mirror.

I have this life as far as I know. Yet I still hope I can get a better reboot situation.

When I have been in the hospital, I have been seen by a variety of teams: the dewy-skinned dermatologists, the inexplicably large neurology group, the gastro doctors. In August, the kidney doctors visited me several times. “We just have to stop the diarrhea,” they said matter-of-factly. It made me laugh because that’s all we’ve been trying to do for years. If it were that easy, we would have done it.

The PRRT helped a lot for a year, until it didn’t. Now I’m reliant on daily IV fluid for hydration and balancing electrolytes, replacing all the potassium, magnesium and sodium bicarbonate I’ve been losing. My type of neuroendocrine tumors are not only particularly aggressive (my ki-67 markers are 40% when most other people have 1% or 10%), but they also are a rare subset that produce VIPoma, a hormone that causes Verner-Morrison syndrome, which has a cholera-like effect.

It’s a particularly humiliating way to go, but I’m constantly reminded when I see other cancer patients that there’s no such thing as a good way to go. Every cancer is uniquely horrible: the brain cancer patient who had to have things manually expelled from her chest, the head-and-neck cancer person whose facial bones were painfully eaten away. People holding bags of bodily fluids, oxygen tanks. There’s no beautiful Hollywood death where you just get a nose tube or an IV bag. Cancer is messy and disgusting and like snowflakes, uniquely terrible for every single person who has it.

I actually read an article about how neuroendocrine tumor patients, who often have pancreatic tumors, don’t have the weight loss of the pancreatic cancer patients. People often say I don’t look sick. (Though now that I’m down to 86 pounds, I do look a little gaunt.) Steve Jobs, Aretha Franklin, and Rainè Riggs (Bernie Sanders’ daughter-in-law, who died two days after her cancer diagnosis), all seemed to look OK up until the very end. I mean, Aretha Franklin had three outfit changes at her own funeral and looked better than most of us while we’re still alive. So at least I look OK for now?

I had a CT and a dotatate scan on Monday, and I met with the doctor to discuss it yesterday. My lymph nodes and tumor sites have been hurting, and it seems as if the Keytruda (pembrolizumab) hasn’t been working. The scan results weren’t quite ready for review, but it looks as if things are kind of holding steady. It’s not the “cancer everywhere” report I was expecting. This would be good news if I felt better. But my quality of life is just OK at best.

So what now? I’m slated for another Keytruda appointment in two weeks. Something’s happening. I just don’t know what. Last night, I had to take a oxycodone in the middle of the night because my tumor sites hurt so much. Are they just inflamed because of the immunotherapy? Are they growing? Are they shrinking? No one knows.

I’m in pain. The doctors are trying to manage my electrolytes and balance them so I’m not so fatigued. I don’t know what to do. The other day I was so miserable I was ready to go to hospice right away. My plan was for hospice in mid November; I even started packing up my stuff to give away.

I wish it would it were to stop the diarrhea. It’s what we hoped to do with the last dose of PRRT. It seems impossible to do with these tumors.

I know that my cancer is aggressive and that any time purchased may not be of good quality or for very long. I just want a few months of normalcy, but I don’t think I’m going to get it. I would eat radioactive spiders. I would go to a creepy mansion on a hilltop and be sewn into a new body. I’m in the process of hanging on and letting go.