Hospice

Dying, as it turns out, is incredibly boring. I expressed this thought to my boyfriend earlier today who pointed out that some people are bored with living too. That is much worse, I imagine. I am rarely bored. I always feel like I have a million things to do and not enough time to do them.

I’ve thought about checking out, and then people follow up and ask if I mean checking out of life permanently or checking out of hospice and I don’t know. I realize that I feel good enough to check out of hospice because I’m in hospice, with constant fluids and pain medication and electrolytes. There were times last week when I didn’t think I would make it to surgery, I was so weak and exhausted and in pain. Now everything is controlled, and I feel better, but on the outside I would be weak and sick again.

So far, one doctor and at least one nurse don’t like me. Someone likened it from going to first class to economy. I’m not used to making so many enemies now that I’m not in my 20s and I’m not drinking.

It’s strange to be the healthiest person in hospice. If I stopped taking my potassium and electrolytes and fluids, I wouldn’t be able to walk or control my lower body and eventually my heart would give out. It will probably take about a week or so to die. But I’m not there yet, so it’s odd. I want to sneak out to see the cats and do stuff. I’m also not well enough to be among the rest of the living, though. I’m in between.

I need to check out or check out. I probably need to do the permanent check out but I am scared. I have been resistant to home hospice but now I’m in a Libra conundrum of indecisiveness.

 

Deathbed Tourists

Years ago, I dated someone whose family ran a funeral home. Long before my cancer, I shared one of my fears about death: That frenemies would show up to my wake or funeral or that people who weren’t nice to me in life would show up and pretend to be sad, and I wouldn’t be able to do anything.

He promised to tie a string to my middle finger and pull on it when someone I disapproved of stopped over my coffin so that I could send one final message to people who I didn’t want at my wake.

I guess I always have to have the last word.

Now that it’s time for me to actually die, I have other things to worry about. And yet… I find myself irritated by a few people who would insincerely pretend to care. The first person that comes to mind is my ex-boyfriend, the one who left me last year. Every now and then, I would receive an email that was a halfhearted attempt to ease his conscience. Sometimes he acknowledged that I didn’t want to hear from him. In his last message, before my Times article, he said, “Know that I am here if you need/want to reach me.” Here. What does that mean? London.

I was tempted to tell him to read the Sunday New York Times to read how I felt. Instead I told it would be helpful to pay me back for my GoFundMe and his student loans on time every month. I don’t know if he’ll be able to muster faux sadness after my article. I think he might feign a sadness that we grew apart for the benefit of others. I’m aware this is a terrible thing to say, but when he tries to be deep, it’s like jumping into a pool and hitting your head on the shallow bottom: painful and embarrassing.

Shortly after we broke up, I found a note that he had written to himself, outlining his version of the story. I think it may have been a draft of a letter to his London lady. It detailed how I was kind of a terrible person before devolving into four lines of unforgettably bad poetry. I will tell you about my broken finger, the money he stole from my savings, the GoFundMe money he tried to take, but I can never share the poetry. It’s too cruel. Even I have a line I won’t cross. (Unless I was intoxicated last summer, when I would occasionally do dramatic recitings aloud.)

One night he fell asleep, after blowing me off to eat pot chocolate, with his phone in his hand. I put the phone on my nightstand. When his alarm went off, a series of flirty texts from London appeared. Furious, I started typing back, but then the phone locked up on me. I went back to where he was still sleeping. “Get out!” I screamed, throwing a pillow at his head. He woke up, confused. “I know about her!” I announced. “I know more than you think.” (At this point, he was unaware I’d heard his lascivious description of their time together in England and his plan to stay with me to “take care of me” while I was sick while pursuing her.)

“I know you’ve been writing her terrible poetry!” I thundered, throwing more pillows.

“No…” he started to protest.

“Are you trying to tell me,” I screamed, “that that poetry wasn’t terrible?!”

He had no response.

I recently watched The Marvelous Mrs. Maisel, and when she’s throwing out the jokes at her fleeing husband, it struck a chord. I think sometimes people don’t realize how hurt I am because I either make jokes or come across as angry.

The latter has particularly left me misunderstood, especially when it comes to friends who have stabbed me in the back. Once, mutual friends called me after a “friend” had spent the entire night drunkenly tearing me apart in front of someone I was dating, and asked me why I made her cry. All I’d done is say it wasn’t nice and ask if she was OK, but she turned it into an attack and turned some other “friends” against me. I cried for months. (Small voice: I also may have tried to punch her in the face but I missed.) “You know how she is,” these girls say about me. I “lash out.” I’m so mean and scary. I’m painted as a villain.

It’s better to be the villain than the fool I feel like when my trust is broken. “I’m hurt!” I sometimes exclaim to others, veins bulging from my forehead. “I’ve been wronged. Don’t you see, she’s trying to destroy me?” I sound crazy. It’s so easy to make me look crazy. I worry that I’m crazy. In the mid aughts, I had to go to therapy for years after the friend debacle, because she would goad me and I felt like I was losing my mind. I stopped talking to most of our mutual friends and it ended up being a good decision.

My old frenemies sigh and pout and bat their eyelashes and say that I’m unreasonable in plays for sympathy. Lots of people believe them. This has happened to me at least three times. I never learn with a certain type of insecure girl.

I don’t get the sympathy. Instead I get the laughs. I’m tough; I’ll make it through. I’m not going to be a simpering victim. It’s OK. Sometimes I just feel misunderstood. All my old frenemies will be relieved, I guess.

My uncle has been progressively meaner to me over the course of my life. He is a stealer of joy. He’s also an actual thief, who convinced my mom to give him money even after my grandmother warned me to look out for him. Then he turned us into villains. He recently contacted my mom, no doubt because he heard that I’m dying and he’s eager to weasel his way into inheritance money. He would always appear at the doorstep of the sick and dying.

Why am I so angry? Why am I wasting my precious time worrying over these people? Why do I turn my thoughts over the people I feel hurt by: friends who have turned, people who have said I’m like family then ditched me, people who I’ve felt abandoned by?

I need to let it go. But as Kim Gordon of Sonic Youth said of her ex, Thurston Moore, “You can’t really forgive someone if they don’t say they’re sorry.” According to Gordon, the Dalai Lama said you don’t need to forgive if you have empathy for the person.

I don’t understand these people though.

Yet I’ve thrown so much shade, I’m sitting in the cold. I want to be in the sunshine. Is that a selfish reason to want to forgive? Is it any worse than being like them, wanting to appear kind in the eyes of others by pretending to feel something other than contempt for me?

I call them Deathbed Tourists. My illness is a backdrop. It’s so sad that I’m dying, but it’s definitely my fault that our relationships ended. Isn’t it? I broke up with my ex via email. This is true. I broke up with him after he booked a solo trip to Iceland and then said I needed to pay $1,000 of his COBRA insurance coverage. I stopped talking to those girls after being humiliated, after being stabbed in the back. I stopped speaking to my uncle, tired of his verbal abuse every single holiday, when his goal seemed to anger me and make me cry, so much so that my grandmother said something to me and I was absolved from having to be around him anymore.

I’m a photo op. A shame. Something to shake your head at sadly. They tried to be there for me, but I turned them away.

But do I miss any of these people? No. My life is much better now. Why do I dwell here, in this dark place of hurt? I want to really let them go before I go. I don’t know how.

A Pain in the Neck: Coming Full Circle

It started just below my clavicle on the left side. It was December 14, 2012, and I noticed a strange bump. After being dismissed by my primary care doctor and going to a sports medicine doctor, who became increasingly alarmed as the bump grew over several months and I developed a rash, the sports medicine doc sent me to a specialist who discovered I had Hodgkin’s lymphoma. Bulky tumors spread through my chest and I could barely move my left arm by April. Six months of ABVD chemotherapy didn’t work, so I did two rounds of in-hospital chemo and 10 days of radiation, followed by a monthlong stay at Memorial Sloan-Kettering for an auto stem cell transplant.

Nearly seven years later, I’m probably at the end of my fight with cancer, this time a different type: neuroendocrine tumors. I’ve had a Whipple procedure that removed part of my pancreas, some of my intestines, part of my stomach, my entire gall bladder, and some lymph nodes. I’ve had a liver ablation and several embolizations. I’ve had four rounds of Peptide Receptor Radionuclide Therapy (PRRT), though the last one wasn’t magic like the first three were.

It seems impossible to accept that there’s not much more to do, until I list all of the treatments and surgeries and procedures. When I looked back the other day at all the treatments that the hospital has come up with to extend my life and improve my quality of life, I’ve been taken apart and put back together and been made radioactive and had systems broken down and rebuilt. At some point, all the king’s horses and all the king’s men and even modern medicine won’t be able to put me together again. Even with this list, it’s hard not to feel defeated.

I wanted more time. I still want more time, but only if it’s quality time.

Last Wednesday, I tried an immunotherapy drug called Keytruda that has a 3 percent chance of working for my rare type of cancer. The odds aren’t good, but it’s my last option before hospice.

Am I losing, in the end? Eventually our bodies stop working. Mine has been trying to kill me for an impressive seven years. I probably shouldn’t even be here. I wouldn’t have been here maybe a century ago. The PRRT that bought me the last year wasn’t even FDA-approved until right before I became the first patient at Memorial Sloan-Kettering Cancer Center not in a clinical trial to receive Lutathera. I have the very best doctors at one of the world’s very best facilities, staffed by some of the very best people at the top of their fields. I’ve been extremely lucky in that sense. They’ve worked tirelessly not only to keep me going, but to help whenever they can regarding quality of life.

In seven years, I fell in love more with New York City. I lost three beloved cats and gained three more. I got a new job. I went to concerts, museums, performances. I traveled to Scotland, Spain, Cuba, Bermuda, California, Barbados, France, Ireland, Iceland, Sweden, Denmark, Tennessee, Vermont, New Hampshire, and so many other places. Milestones happened: birthdays, anniversaries, weddings. People I love made new people and I got to meet them.

There were also upheavals, heartbreaks, betrayals, lay-offs, deaths, illnesses, losses, and the usual hardships. But I can’t imagine missing any of the last seven years.

I mean, a Cleveland sports team even won a championship.

I met and gotten to know a lot of people in the past seven years too, and I can’t imagine having left without meeting them. I even dated, something I’d never thought I’d do (or have to do), and I fell in love. On Tinder.

So if this is the end, I didn’t lose. I feel like the doctors bought me time. I feel like I robbed a bank and have been on the lam and the authorities are closing in, and my time of getting away with it has come to an end. I’m full of sad resignation and defiance. (Actually, that sounds like the finale of one of my favorite TV shows.)

I’m waiting for the side effects of the Keytruda. I’m told they are minimal. I keep waiting. Do I feel different? I think I’m maybe getting a slight rash. I do feel a little different but I couldn’t tell you how exactly. For the most part, I pretty much feel the same. I get a little tired. It’s hard for me to climb stairs.

My lymph nodes hurt. They hurt increasingly over the summer, as the neuroendocrine tumors spread through my lymph system. I feel kind of sore, especially in my chest, near my clavicle. This time it’s on the right side. My neck feels sore.

And so now near the end, here I am, with a pain in the neck.

The irony isn’t lost on me.

 

Lemonade and a Hail Mary

As I noted, I was supposed to be in Pasadena last weekend for the Cure concert and to see my LA friends. I require daily hydration and am not excited about traveling with an accessed Mediport and fluids and possibly faulty legs prone to giving out unexpectedly. So I stayed here. New York City is my favorite place, and it’s the center of the universe and it has my heart, so it’s not so bad. New York and I are a week and a half from celebrating 11 years together. (Well, I am celebrating. NYC likes to play things cool.)

We did a staycation, first one night at the Dream Hotel, then the second night at the Gansevoort Hotel a few blocks over. Most of the time we lounged by the pools, aside from a detour to Memorial Sloan-Kettering for fluids. (To have my port accessed and then de-accessed for pooltime, I went in for fluids.)

I rallied. I went to a backyard barbecue in Brooklyn last Saturday, did some light gardening on Sunday, ate a Labor Day hot dog—a chili dog, in fact—last Monday. This week I went to a storytelling event and comedy show and to the office and to a birthday party. “You don’t look sick,” some people tell me. I notice that my bicep is as big as the chili dog. My guts roil. My insides hurt. Since I am only going to get worse, I’m trying to rally as hard as I can before the end. But I never feel well.

I had fun on my staycation, but sometimes I’m tired of making lemonade from this pile of lemons. At this point, I feel like my hands have been sliced up with a mandoline, and the lemon juice stings. I can’t bear to make or drink another glass of lemonade. I’m out of sugar and it’s sour and makes my cheeks pucker. I’m out of patience. I’m out of metaphors. I wish I were Beyoncé and my lemonade made me millions.

I had my first post-PRRT follow-up with my oncologist, and I brought my health care proxy and my “bad cop” who comes with me to doctor appointments. We were armed with questions about hospice and any possible last ditch treatments. After my New York Times article, people had offered their top health care advocates and services like Cancer Commons to leave no stone unturned. The info was ultimately helpful, but the main downside of having the best doctors at one of the top cancer hospitals is that they’re aware of everything that’s out there, unless there’s a mad scientist on a rainy mountaintop with a bag of radioactive spiders sewing brains into repurposed bodies. Once they say there’s not much they can do, that’s kind of it.

And there’s not much they can do anymore. I knew this day would come, but I’d hoped the PRRT would buy me some time. It didn’t. One thing that came up with the health care advocate and a conversation with someone on the Smart Patients website is Keytruda (also known as Opdivo and prembolizumab). It’s not approved for neuroendocrine tumors because the immunotherapy hasn’t worked for a lot of people. They’re getting a compassionate release.

Right now, my tumors hurt and they feel like they’re spreading. I feel worse every day. I’m tired. I have to do IVs and supplements all day. I rally but it’s harder. The side effects could be bearable, though it also could make me feel worse. It works better with other drugs, like Yervoy and PV-10 (sometimes 19% rather than 3%), but those could give me worse side effects. It’s a Hail Mary pass. It’s unlikely to work.

My first infusion is September 18. I have so much to do before then. I’m wrapping up work before disability. I hate the idea of not working. I can’t do any work at all so I’m frantically writing and submitting before September 17, my last day of work. My mom is in town.

Today I decided where I would like to die. I had plans to tour three Calvary Hospital facilities. My oncologist and I talked about what to do when the pain and side effects when they become unbearable. I have decided to stop electrolytes and hydration when that is the case. The best place would be inpatient care, but I would probably have to do home care first until I declined enough to qualify for facilities. The Bronx facility is nice but far away.

I was told I could just pop by for tours of the Manhattan and Brooklyn facilities. When I got to the Manhattan location on the Upper East Side, I just didn’t get a good feeling from the moment I signed in. When I went to the 15th floor Calvary area, I stopped at the front desk and told them I was going to take a tour. “You’re going to have to wait because we’re in a meeting,” said the nurse. “How long?” I asked. “Ten minutes,” she said, before disappearing back into her meeting. I wanted to joke that I had less time than most, but I bet most hospice-type places get that a lot. Plus the nurse was gone, and there was no place to sit and my bones hurt sometimes. I wandered the hall for a minute then left. If I didn’t like it for the eight minutes I was there, I wouldn’t like to die there.

Next up was the Calvary location at NYU Langone in Sunset Park. Not too far like the Bronx or too rude like the Manhattan location, I decided that was a nice place. I’m still too well for hospice but once I stop taking my hydration and electrolytes, I decline fairly quickly. My main concern is that the side effects of the Keytruda might push me into hospice or my tumor symptoms keep progressing rapidly.

I have so much to do. And this is a deadline. An actual drop-dead deadline. I won’t ever get married or go on another vacation, but there’s a lot of weird little things I think about. I’m afraid to start watching a new TV series. I have a bunch of books to read. I waited too long to buy photo frames for my Spain pictures. I am annoyed I have to buy so many garbage bags in a pack when I will be around to use how many? Six? Ten?

People kept asking when they could drop in to see me, and I won’t be accepting visitors for much longer. I spent this past year saying goodbye. I’m tired. Everything hurts. I am stealing my former neighbor’s “living wake” idea and having kind of an extreme going-away party on September 14. I want to be around for my own party. I know that’s not for everyone, but I think of all the chances I missed to say goodbye to friends who died young. It will be celebratory: a happy time in the midst of a greater sad time.

I Google the hopeless statistics and cry a lot too. I didn’t get an extra few months of wellness. I’m angry. I’m sad. I’m tired. I’m disappointed.

As I spoke to the supportive care people about end-of-life things at Memorial Sloan-Kettering, someone said I seemed very matter-of-fact. Sometimes I am going over something with a friend/loved one and their faces have crumpled and I have forgotten that I’m talking about my death. It’s another to-do sometimes. I’m maybe not dealing with it properly.

Sometimes, when the pain in my right shoulder is too much or I feel too sick or my IV pole has fallen over again or I am taking hateful shots of potassium, I look forward to the end. I want to be free of this broken body already. I don’t want to leave, but the next step is off a cliff into the unknown. It offers nothingness. It offers freedom.

Gone Too Soon

Today, I saw an announcement on Facebook from someone I went to high school with that one of our classmates had died.

For a split second, I expected to see my own name. But it was someone from our class who had an ongoing battle with diabetes.

We weren’t close, but I knew her. We had some of the same classes and friends. My high school class of about 250 people had developed some sort of solidarity by the time we reached senior year. We had survived adolescence and most of our teen years together and had formed a bond. While a lot of people I know complain when they get a high school classmate friend request, I can say I genuinely like most of the people I went to high school with.

So when someone dies it’s upsetting and sad to say the least. In this case, I knew very little about her diabetes. Her rare health posts were upbeat, during her surgeries and hospital stays. I often admired how she handled her chronic illness with grace and a sense of humor.

At our 10-year reunion, I ended up talking to her for a while. There’s a photo somewhere of me and her and another friend goofing off, sticking our tongues out at the camera and being less angst-filled than we were as teens.

She had a tough exterior, but it didn’t hide that she was a truly sweet, generous person. I hope I can handle what life throws at me with half as much strength. RIP.