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.

 

Treatment Delay and My Extreme Going-Away Party

Yesterday evening at Brooklyn Bridge Park, we watched the sun set. “Bye,” my boyfriend casually addressed the giant red orb as it slipped below the horizon. “See you tomorrow.”

From my party slideshow, when people thought I was goth and cool in my early 20s before they got to know me.

I smiled at his comment. I would see the sun the next day, today. We all live with the hope and assumption we’ll see the sun rise another day. I’ve been grappling with the thought that one day soon I might not. It doesn’t seem real that my time is up. I find myself still circling flower bulb choices for my garden plot. I look at upcoming concerts.

I was going to get a Keytruda treatment this past Wednesday, but on Tuesday I found out there was a delay in approval, so it’s slated for this coming Wednesday instead. It doesn’t change much, though I probably would have worked a few more days before going on disability. My last day was Tuesday at work, and it was bittersweet.

I’m a little afraid. I’m worried about the side effects: swollen lymph nodes (mine are already hurting because of the tumors), muscle and bone pain (already have some of that too), a rash (vanity; I already am diminished). There’s only a 3 percent chance of this working too, so this extra week gives me one more week of hope before it’s probably dashed. I firmly believe I’m going to win the lottery every time I buy a ticket.

I’m sad. I don’t want to go. I would like to have some wellness and stay and it’s impossible.

Last weekend I had my living wake, which I re-named an Extreme Goodbye Party, at the event space in my friend’s apartment building in Long Island City. I wish it could be an annual event for years. An unnecessary event.  I saw so many people from my present and my past, from high school friends to more recent writing group members. I was inundated with well wishes, flowers, cards, and gifts: a custom flower-crown, cat ears, T-shirts, wine. A friend/former co-worker from Columbus sent a gift box of goodies from the iconic record store her boyfriend owns.

Another favorite thing: Friends brought some of my favorite foods. A friend made blackout cookies. My boss painstakingly decorated delicious cookies in the shape of my favorite Slack emojis (Chompy, Free Food, Party Shrimp, and of course, Party Parrot). My friend Kate made blue Jell-O shots with gummy sharks as a tribute to the shots I made for a viewing of Sharknado, and her friend dressed up his dinosaur/Gremlin in a life vest, with teeth marks in it. (Yes, you read that last part correctly. Please refer to the photo.) Another friend made rich blackout cupcakes. My friend Cheryl sent Cheryl’s Cookies.

I kept heading towards the deviled eggs and the onion dip and never made it. People brought Doughnut Plant doughnuts. Jeni’s Ice Cream appeared; my friend Dorian was wearing a Jeni’s shirt because, he noted, if you’re visiting from Ohio, you have to let everyone know with an Ohio T-shirt. Two friends brought the winners of the fried chicken sandwich taste test I set up at work to prove Chick-fil-a is overrated, and the Shake Shack sandwiches disappeared within an hour.

Like the famous In-and-Out Burger mystery in which a girl painstakingly transferred burgers from LA to NYC, my friend Pam transported the best veggie burgers (and hands-down the best burgers) from Northstar Cafe in Columbus. I’ve tried to re-create them and haven’t cracked the code.

My friend Lisa contacted Hale and Hearty Soups to ask if she could special order my absolute favorite soup, Creamy Tomato with Pasta and Meatballs. When I arrived at the party, there was a simmering pot of soup. She told me later that even the soup was out of season, Hale and Hearty vowed to make a special batch for me and ordered the ingredients.

Photo credit: John Wadsworth

My favorite thing was the memories and stories people shared. I wasn’t sure about the toast portion of the evening, initially nervously sipping from my red Solo cup. But hearing tales from my life, from the “origin stories” of friendships and funny memories to the serious stuff we’ve been through together with one another was a highlight, especially since I felt like I spoke to everyone for about two minutes each. We spoke of the time we drank a bar out of sparkling wine after a dry wedding, the difference between being my nemesis and enemy, silly advice that I’d doled out that went unheeded. We spoke about how we’d changed one anothers’ lives.

Since I announced the party, I received notes and messages from people who couldn’t attend. A lot of things people have said surprised me. In a video message and in person and via email, several people have said I was inspiring. A high school pal half-jokingly said she changed a WWJD? bumper sticker in her mind to “What Would Josie Do?” She said, “I liked that better.”

Me in my goth apartment, looking goofy. I was always too happy to be a real goth girl.

At least three people said that they were initially intimidated by me and thought I was too cool to hang out with them. That was especially funny considering what a big dork I actually am once you get to know me. In many renditions of people’s stories, I was a lot of characters: the high school/college goth, the reliable quirky sidekick in an ’80s or Gen-X film.

In more tearful portions, guests recalled our shared heartbreaks, divorces, losses, hard times, and how we were there for one another.

Photo credit: John Wadsworth

Then we ate and drank more. I said so many hellos and before I knew it, it was time for the goodbyes. It was such a whirlwind. I want so badly the goodbyes I say to not be final. Eventually they will be for all of us. The sun will set on us for the last time. I want more toasts and parties and sunsets, but if I don’t have many left, I’m grateful to have shared them with so many good friends and people.

Terrible Things I Have Done This Week

Since I’ve announced I am close to the end and since my article in the New York Times, friends and strangers alike have said a lot of nice things about my outlook and how I’ve handled cancer and dying. That’s just what I present, though. I also have some low lows. Dying is hard. Here are a few things I’ve done that are terrible, just this past week.

I threw my medication across the room in a full-blown tantrum after my mom told me that I would go to hell if I didn’t accept God’s will. I need to stop being so angry.

I tried to break up with my boyfriend after he said my going-away party would be too sad. I keep trying to spare him and set him free. I know I am trying to protect myself by calling things off before I feel like he is going to leave me, but I finally need to accept that he’s a good guy. I had to promise to stop breaking up with him. I don’t even want to break up with him ever, because he is the best. I need to stop letting my terrible last relationship haunt me. I also need to stop pushing people who are close to me away, because it’s not helpful.

I ignored a woman who I think maybe was yelling at me last night at a restaurant. She was passively-aggressively angrily talking to her baby and looking at me. I think she was telling the baby I was a bad person. I was talking about cell phone etiquette but I think she thought I was talking about her and her baby. But I didn’t want to engage, and so I ignored her instead of clarifying anything, and now I feel bad. People who passively-aggressively badmouth me to infants kind of scare me though. I should be more brave.

I cried when I received a plate of lukewarm duck at a restaurant. I’d spent all day touring hospices and deciding where to die, and cold duck at the understaffed restaurant was the last straw. I cry about weird things now because I sometimes don’t cry about the big things, like dying. Cold duck?! Why is the universe testing me? I had a similar meltdown years ago about missing an oyster happy hour after a graffiti artist blew off an interview with me. I really hate when cancer comes between me and fancy food.

Essentially, I am acting out of anger and sadness in inappropriate ways, and even though I know I’m doing it, I can’t help it. It’s like I’m looking at myself from the outside, horrified, and can’t stop it from happening. Dying is difficult and sad, but I’m trying to learn from my mistakes.

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.