Dear You

“Dear you.” I’d been composing the letter in my head for weeks, but the first few words were the only ones I’d committed to screen.

Then they were all gone. I didn’t write any more.

They’d never been alive, really. They were five clumps of cells in vials or petri dishes. I don’t even know how they were stored. Nothing survived the thaw. What really died within 48 hours was hope I’d been hanging onto for more than six years: a feeling of assurance that I would have genetic offspring. Since my cancer became terminal cancer, I realized I would be unable to use my frozen eggs and embryos. I was donating them to two hopeful families. They were going to implant the embryos and thaw the eggs and then create embryos. The letter I had been composing was to the people that I’d expected would come from the eggs and embryos.

Sometimes I refer to the sad thing that happened in February. This was the sad thing. I don’t talk about it much.

It never occurred to me that the egg and embryo donation wouldn’t work. I guess eggs and embryos don’t thaw correctly all the time. I had been relatively healthy—at least fertility-wise—when was 35 and froze five embryos, created with my boyfriend at the time, and 11 eggs with the help of Livestrong cancer charity and NYU Langone Fertility Center. I was about to start chemotherapy at Memorial Sloan-Kettering Cancer Center for Hodgkin’s lymphoma: six months of chemo, which then turned into rounds of high-dose chemo, radiation, and a stem cell transplant that put me into early menopause.

With modern medicine, however, I could still potentially have children using the frozen embryos and eggs. A few months before I could get the green light to use the embryos, the doctors discovered that a spot that kept lighting up on my scans was a different type of cancer: neuroendocrine tumors. I had a Whipple procedure to remove the tumors and parts of my pancreas, stomach, intestines, lymph nodes, and gallbladder. It wasn’t until more than a year later that I learned my cancer wasn’t going to go away, and I would never be able to use the eggs or embryos myself. Even more recently, I had discovered my tumors are pretty aggressive. I measured my life in months.

Still, I’d had hope for the embryos. A friend even offered to carry and raise one alongside her own child, so I could be involved. My boyfriend wasn’t mentioned, because he didn’t seem to want anything to do with it. Then he disappeared as well; cut off from my savings account he regularly dipped into, he left me for an old friend of his, a recently separated Pilates studio owner he “reconnected” with on a business trip to London.

After so much time and expense—and hope—I decided to try to donate the eggs and embryos. I have to admit, it felt like something selfish. It’s always made me sad when people don’t have children. I needed to leave a genetic legacy. I wanted to be like Genghis Khan (without the pillaging) or Ben Franklin. I needed to leave something of myself behind.

When you’re told you don’t have much time to live and your boyfriend of 12 years has just left you, people are afraid to tell you no. It would have been helpful, in retrospect, to not have quite so much optimism thrown my way, but that’s hindsight after a crushing loss.

Until recently, I felt completely alone in embryo donation. I had no roadmap and I was actively discouraged by NYU. Though it’s been around for decades, embryo donation seemed like uncharted territory. Knowing that my ex didn’t want anything to do with the donation, I told NYU in June I wanted him to sign over the rights to the embryos entirely to me. Initially, they said he just had to write something on the existing contract, but when we got to the clinic, there was a lot of confusion. They sent us away and said we needed to talk to their legal team. I called repeatedly, and the NYU clinic advised me to get a lawyer and draw up a contract.

My attorney and I then spent the summer trying to follow up with them about the contract. By August, everyone was on vacation. In the meantime, my ex and I did the physical exams required by the FDA. (New York State law treats egg and embryo donation like tissue donation so you have to go through exams as if you were donating an organ, even though the material had been frozen years ago.)

In October, the clinic said I needed to speak to the on-staff psychologist. I felt like she was designated to talk me out of it. She told me that to release the embryos and eggs, I needed to have recipients—and I wouldn’t need the contract that I had paid the lawyer to draw up. Why had they told me I needed a lawyer? I asked.

“Who told you that?” she kept asking me.

“You did,” I replied. “This clinic. NYU.”

Finding someone who would want them would be difficult, she told me, especially with my cancer history. “You’re telling me that no one wants my terrible genetic material?” I asked, on the verge of tears.

“No one is saying that,” she said.

“Steve Jobs and Aretha Franklin had this cancer,” I countered. “Are you saying they shouldn’t have been born?”

I hadn’t been looking to recipients because I had been focusing on getting the rights to the embryos first. The NYU person said the only group that might want them was a Christian organization but I was put off a bit by the group, even as I asked for the necessary donation paperwork. By this time it was late November.

Search engines led me to baby sites and just a few organizations. If I couldn’t have Google to guide me, who could I trust? Frustrated, I told someone I was just going to put up fliers with my phone number to tear off at the bottom, like I was giving away kittens. Maybe I’d stand outside fertility clinics in a trenchcoat. “Hey, lady, you want some babies?”

Finally in early December, I found some Facebook groups: And the perfect recipients. I felt these families would do a better job that I even ever could.

Those little cells gave me so much comfort and insurance throughout the years. I never knew if I wanted to have children or not. I definitely felt like I needed them to make my life matter, but I didn’t yearn for babies, like some people. I always wriggle out of holding babies, tucking my arms behind me or jumping up and filling my arms with sharp objects. Babies make me nervous.

Me putting baby powder on a doll

Look at this childcare situation.

As a little girl, I always preferred my stuffed animals over dolls. A photo of me when I am about two shows me “playing Mommy,” according to my mom’s caption, with a doll on the floor. Her face is covered in baby powder. I put another doll in the laundry hamper and her tangled hair stood straight up from then on. It was handy for holding her by. Perhaps I was a better cat lady, caring for my three felines.

The clinic the embryos and eggs were shipped too said there was something abnormal about the embryos and eggs. NYU had considered them a “medical freeze” and were frozen at day one instead of three or five. I never knew this. I’ll never know what went wrong and why. I still paid the same storage fee. I picture them stored in an old lunchroom freezer along with other charity jobs.

I’m not saying that NYU Langone messed up for sure. I’m just saying they were extremely obstructive and weird about the whole thing, and then nothing survived the thaw.

I felt incredible guilt for allowing the people I’d selected to receive eggs and embryos hope with me. I’ve been focused on the end of life for so long, I don’t know much about how fragile the beginnings are. I am sad that we went through this together, but I can’t think of any other people I would have rather have gone through this with: kind, compassionate, generous people I can now count as friends.

Another reason I wasn’t sure if I wanted children is the risk of having my heart out there, inside other being that I would be expected to put out in the world. How could I protect them? How could I survive the first time they’re bullied, their first heartbreak? How could I let them go? Egg and embryo donation seemed like a good compromise for me.

I found out about the embryos first; the recipient messaged me to tell me the news. I realized I was waiting all day to hear that the lab made a mistake. That call never came. Instead I got a message from the egg recipient the next day: None of the eggs had made it.

I was midway through a French cream doughnut when I opened an email from the egg recipient. That was it. After six years of mistakenly believing that I would have some sort of genetic ancestors, it evaporated in a little more than 24 hours.

I had started to eat a doughnut as one woman and finished it as another. I kept chewing, thinking about how I wish I could go back to the beginning of the doughnut. Frozen in time and hope, like the embryos.

It wasn’t the prolonged years of infertility that some face. In a way, it wasn’t even my loss. But it was packed all into one powerful punch.

I cried. I actually almost cried my eyes out. I had to go to the eye doctor because my corneas got dried out and my vision was always blurry.

Some days I couldn’t get out of bed, the heavy blanket of sorrow weighing me down. I finally had to because one of my three cats took preliminary nibbles at my inert form. He stuck his nose in my ear and up my nose. He put my heel, which was sticking out from the covers, in his mouth, his teeth gently touching my skin but not biting. Finally, he got on my headboard, like a professional wrestler mounting the ropes to finish his opponent, and launched himself onto my chest. It was time to get up and stop wallowing in my self-pity. I am still necessary to other beings.

I talked to a friend about legacy. “I know how excited you were, but I promise you you are worth way more than just your eggs or embryos,” she wrote. “You have such an impact on your friends.”

I needed an angel who needed its wings to show me my life like George Bailey in It’s a Wonderful Life. What if everyone’s life would have been better? I feel like maybe I didn’t matter.

I wanted to pass along my family stories somehow too. Over the holidays, my mom and I pulled out some of my grandmother’s handwritten recipes. On notebook paper, she’d written out her recipe for chicken paprikas and the following note to me. “Don’t be disappointed if it’s not a success—many cooks fail. Next time you’re home we can make it-—so you can really be successful. It’s easy. Good luck. Love, Grandma.” When I posted the image on Instagram, a friend who is a chef said she was going to share it with her team. Maybe those words will help a young chef whose rice burnt or whose pasta fell apart to keep going.

I wish my mom could have been a grandma. She would be good at it. People talk about her kindness as well. A friend from grade school told me that she remembered when the Care Bear craze was going on, all the stores were sold out of them. My mom, who sews a lot, made her a Care Bear so she could have one. I remember my mom even sewed those little hearts onto the bears’ bottoms.

When I was in the hospital fairly often last year, people kept trying to cheer me up with old memories. A friend took a photo of a bunch of old mix tapes I’d made him in high school and posted it. One was titled “Cool Music.” It wasn’t cool after all, looking back. I’m sorry I led him astray, but he seems to be doing OK.

I introduced a few couples, so there are a few people in the world who owe their existence to me, at least a little bit. I can claim them at some point, like Rumpelstiltskin.

Someone recently told me a quote. “There are three deaths,” writes David Eagleman in Sum: Forty Tales from the Afterlives. “The first is when the body ceases to function. The second is when the body is consigned to the grave. The third is that moment, sometime in the future, when your name is spoken for the last time.”

I’m so worried no one will speak my name. What will I leave behind? Not a computer empire or a singing career like Steve and Aretha. I have all the good people I’ve surrounded myself with.

At my living wake/extreme going-away party, I felt as if I truly had a legacy to leave behind. People left messages and spoke about how I’d affected their lives. It was the George Bailey moments I needed without the angel. People spoke of being inspired to go out and do things and enjoy life, because it’s short. I got a lot of nice feedback from people who read my New York Times op-ed and are working on relationships or starting to date. I’ve received messages from strangers about how they’ve shifted their perspective and want to enjoy and appreciate life more.

In the end, it’s not a bad legacy to leave behind.

Like the end of It’s a Wonderful Life, I am reminded, “Remember, no man is a failure who has friends.”

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.

Three Little Kittens

When I was a little girl, one of my favorite children’s stories was about the three little kittens who lost their mittens. I have always loved cats. My dolls sat languishing in their doll beds while my stuffed animals got all the attention.

Before Instagram, I had to make my own photo layouts of cats when I was about 10. Pictured are Pretty and Perky, my grandpa’s cousin’s cats, and Morton, the beloved black cat who lived next door to me growing up.

We would sometimes visit my grandpa’s cousin in southern Ohio, a widow. I was told she didn’t like children and so I had to be on my best behavior. I spilled milk on her before a wedding and I realized then why she didn’t like children. She had two cats: a ginger tabby named Perky and a white fluffy cat named Pretty. I loved them. I knew deep down that one day I would be a cat lady.

When I realized I would die soon, I worried. What was I going to do about my three cats? My ex had initially said he would take them, but I knew that he would move to the U.K. to be with the Pilates instructor he left me for. And I knew that she already had pets, a dog and some cats, because she mentioned them in the flirty texts she sent to him. (Maybe he replaced me with a woman better suited to him and his extravagant tastes, but I take great satisfaction that his British cats will never be as great as goofy Ziggy Stardust, cool Lux Interior, and sweet Lulu.)

I started this post last year when I was dying, then I was too busy living to finish it. The question of pets comes up in support groups and among the terminally ill. What do we do with the animals we adopted when we expected to outlive them?

Thankfully, someone has agreed to take in my three cats all together. It’s such a relief. Right now, the cats also have a catgodmother who comes and cares for them during my hospitalizations.

My cats have a lot of personality. Everyone who visits has a favorite. Ziggy, a friendly good-looking tabby, needs lots of attention, and turns on the charm for all visitors and is a popular choice. Lux, a black cat with a hearty appetite and a goofy personality, has his own distinct fan club. Lulu, a small somewhat shy tabby, cultivates fiercely dedicated devotees with her sweet and gentle disposition.

Ziggy Stardust

A friend took a photo of Ziggy at his birthday party.

Ziggy is the cat who greets people at the door. He needs to charm everyone, whether you are sleeping on the daybed for a few days or over to fix the printer or the pipes. He is a ham. He poses for pictures. He’s a handsome cat, with big velvet painting eyes and a pink nose, and he knows he’s attractive. Some people say he’s a dandy.

We have a special bond because his sister, Charlotte Sometimes, was very sick with FIP as a kitten before she died. He would try to play with her but she was too weak and my ex would often lock Ziggy in the bathroom when he would try to play too rough with Charlotte or when Ziggy would mess with his record collection for attention. So sometimes I would spend time in the bathroom with him, during his exhile. Ziggy’s also really smart, so he figured out how to open the bathroom door, so if he got bored enough, he would let himself out.

Ziggy was sick at the animal hospital and I went to visit him. A photographer friend took this Madonna and child photo.

After his sister died, he didn’t have anyone to play with and so he would jump out from behind things and puff himself up like a Halloween cat to try to get me to chase him. I would chase him and catch him and then hold him and he would purr. We still play that game when he wants attention. Confused guests asks why he’s puffed himself up, but he’s just trying to play the little game we played. You have to try to pretend you’re going to get him and then hold him. He’s been doing it more and more lately, adding a little jig. His catgodmother calls it his “heed me” dance.

He loves attention so much that he’ll put up with me dressing him up and taking pictures sometimes. He’ll endure an otter hat or being dressed as a cow for attention. He’ll wear his bow tie for special occasions.

Ziggy is uncannily smart. When we were trying to keep him from my ex’s record collection, we got a scat mat, one of those mats that sends a slight shock, and put it in front of the records. In the middle of the night, he found the connector piece didn’t shock and was dragging it to the middle of the room with his mouth, to a place where we would step on it instead. Our eyes met as he moved the scat mat into my path. I didn’t care about the records and admitted defeat, proud that I have such a smart cat. The other day, he tried to figure out the cabinet door so he could get one of his favorite toys.

One day, I caught him on the cat cam trying to dismantle it before he knocked over a lamp. (This makes him smarter than my ex, who left the cat cam on when he called his brother to tell him about the London woman and talk about how he was tired of dealing with cancer.)

He is a sensitive soul and has to be on anti-anxiety medication. Because of his anxiety, he is prone to urinary tract infections and has to have a special diet. Of all the cats, I worry about Ziggy the most, because he lost his sister and he’s going to lose me too. Ziggy is my whole heart. He loves me too, I think. I bought a card with nine cat faces on the front for my boyfriend that said, “I would spend all nine lives with you.” Ziggy chewed the corner of the card. He likes to eat plastic, but it’s as if he was sending a message: I will always be his.

Ziggy’s major flaw is that he eats Apple chargers. Not all chargers, mind you, but Apple brand in particular. I think he has stock in Apple. I have a special case for my charger so I can wrap it up when not using it. He also loves to eat tape and adhesives.

He often sleeps on my neck, like a scarf, purring, his pink nose close to my cheek. I have a painting in my childhood bedroom that looks just like Ziggy. I feel like we were destined for each other.

Lux Interior

Lux was originally a set of ears mostly.

For my 22nd birthday, my boyfriend at the time surprised me by taking me to Cat Welfare in Columbus on our lunch break to pick out a cat. I was still a little bit goth, and after looking at a litter of little black kittens, I picked out a big spooky black cat that my boyfriend thought was ugly. It ran away from me and hid. He had to get back to work, but I needed a cat that very day, and so I took home instead the cat who stuck by my side when he meowed to be let out of his cage: A goofy white cat with tabby spots and tabby tail. One of my friends called him a “Frankenkitty, like someone took a bunch of different cats and sewed them together.” He did look like he was the last cat made at the factory that day and they used the last scraps of fur. I never regretted adopting sweet, goofy, clumsy Maceo.

Now Lux is mainly eyes.

I finally got my black cat a few years ago, at Urban Outfitters. They were picking up the tab for Best Friends animal adoptions, and we were on a search for companions for Ziggy. They hadn’t even put out Lux and his sister, Lulu, yet. They were barely three months old, and when we took one out to look, the other would mewl for its sibling. Lux was mostly a set of ears on skinny kitten legs. He had a tiny white spot on his chest. Both of them have their tails on backwards, so they curl forward. Another cat factory mishap; someone new on the job put a bunch of tails on backwards.

Lulu loves Lux. Ziggy loves Lux. Lux loves everyone. He’s very relaxed, except for when he’s racing around or chasing a spring. He likes to tear apart boxes. He looks at the window and stares at birds and makes clicking noises at them. I can’t tell if he’s impersonating the cats or if he’s telling them that he’s going to eat them.

Lux sincerely believes that no one can see him while he hides behind this curtain.

When he was a kitten, Lux would insert his entire face into your open mouth if he could. Now he is more polite and just inserts his snout. Food is his favorite thing.

Master of disguise. Stealth.

Sometimes I think he would be OK to live on the streets, but one of his favorite activities is to hide behind the sheer curtains. He can see out but he doesn’t think anyone can see in, nor does he realize his feet and tail are clearly visible below the curtain. He jumps out to surprise you and I have to act surprised. I think he’s convinced his sister, Lulu, that you are invisible behind the curtain. One of my friends who is a Lux fan uses a hashtag when he does things like this: #classicLux.

Now that I finally have a black cat, he’s the least goth cat you can imagine. He’s weird, but he’s definitely not spooky. That’s OK. I was also too goofy to be a real goth anyway. He’s the perfect black cat for me.

Lulu

Lulu is little camera-shy and a bit shy in person as well. Ever-cautious, she hides for a little before emerging, unlike the boys begging visitors for attention the minute they arrive. She establishes deep connections. “I love sweet and gentle little Lulu the best,” declared one of my best friends.

She’s a sweet and gentle soul.

Lulu has special meows and language for her favorites, eating on a shelf for her cat godmother. She follows my boyfriend around and meows at him for kibble.

Like my old cat Maceo, she answers to her name, to “Lulu” or “Lulululululu.” I didn’t know what to name her and when my ex suggested Lulu, I had my doubts. But I called her name and she immediately answered, so she picked her name.

She prefers kibble to wet food. Every day she buries her wet food by pawing the hardwood floor around her dish. Every day, the other cats find it.

Sometimes she watches TV.

Even though she’s so shy and timid at times, it seems like she craves adventure and travel. She often tries to sneak into her catgodmother’s bag and see the world.

Lulu suns her belly. Her front paw pads are all black except for one pink toe. Like her brother, Lux, she has a white spot on her chest, as well as an orange patch. She has a black ring around her neck that makes it look as if she’s wearing a necklace.

The person who is going to take care of them when I’m gone came to visit a few weekends ago. It was bittersweet. I know she’ll take good care of them. I told the cats to be good and impress our special guest. Ziggy was sweet and charming. Lux was soft and friendly. Lulu cuddled and even brought out a toy mouse to show off what a fierce huntress she could be. I’m so proud of my little cat family. I will have to say goodbye to them soon, and it will be one of the hardest things. Until then, I treasure my time with three of the very best cats.

Six Potassium a Day and a November End

I usually take 12-15 potassium a day but my insurance won’t let me get a refill until Oct. 31. At this rate, I would have six per day. The doctor and nurse were trying to get me a decent amount but it’s a struggle. I know it will work out but I am extremely annoyed.

I’m trying to stick around until mid November but it doesn’t really matter. The Keytruda isn’t working so I plan to do hospice in mid November. I really want to make it through my boyfriend’s birthday, Halloween, and a few friends’ visits. Then I can go to hospice.

We are out of options. I am so sad. I don’t want to say goodbye to the cats. To the people I love. But I don’t have a choice anymore. I tried so hard to stay for just a little bit longer and in the end, I couldn’t. Everything hurts. My electrolytes are all messed up. I am going to try to stay as long as I can with electrolyte boosts but my body is dying and it is hard to keep up.

It’s also handy to die in November because that’s right before my disability stops paying. I know this is the best possible outcome, but I am sad. I don’t want to go but my body is giving up. It will feel good to stop hydration and postassium when the time comes.

Also our system is broken so my dying wish is that you vote for Warren or someone good.

Last Birthday

My birthday was Saturday. It’s my last birthday.

Three years ago, I was in celebrating my birthday in Glasgow, Scotland. Two years ago, I was in California to see my friends and Depeche Mode, and my boyfriend at the time got upset and tried to leave me and a friend at the Hollywood Bowl and my finger got broken and I realized that he charged my birthday dinner and $500 worth of hotel rooms to my credit card and had been funneling money from my savings account. That birthday could have been better, but I managed to have fun without the spectre of his anger hanging over me, and it put me on the road to independence. (Sadly, I wasn’t strong enough to leave then, and I am forever grateful to the London Pilates instructor with whom he now lives. I sometimes feel bad for her, but I figure an op-ed in the New York Times is a fair warning.)

Last year, I was at a resort in Bermuda with a friend. I had always vowed to get back to Bermuda, and I’m glad I got to see its pink sand beaches one more time.

For this birthday, my boyfriend got me and some friends a boat trip down the East River, sailing to the Statue of Liberty, misidentifying New York City landmarks. A friend made a cat cake. It was such a good birthday with some of my favorite people. I couldn’t stay out too long though, because I felt fatigued. It lasted through Sunday and Monday, and I’ve spent a lot of time sleeping.

Overall, it was a nice last birthday. Time stops at 42. It’s strange.

I’ve been trying really hard to hang on, but ever since I got a cold and then pneumonia a few weeks ago, I’ve felt like I’ve been inhabiting a corpse. I’d promised that if I ever got to this point—to daily IVs that require a needle in my chest, to diapers, to crippling fatigue—I would go to hospice. However, I’ve had things to do. I wanted to live through my birthday. I want to live through my boyfriend’s birthday and Halloween and a friend’s visit.

Then I can go.

It’s strange after this past year of thinking this could be the last to this is definitely the last. Some things snuck up on me and I didn’t notice. My last yoga class. My last plane ride.

I feel like I’m dragging a corpse around. I’m so tired. I look at emails and can’t answer them. My lymph nodes hurt. My stomach and intestines hurt. My neck hurts. Everything hurts and I’m tired. Physically, I’m ready to go. I just have a few more things to do.

HER Podcast with Dr. Pamela Peeke

After my New York Times column in the Disability section, “Dating While Dying,” I got a few requests for interviews. One was from healthy living expert Dr. Pamela Peeke, a name I’m familiar with from my women’s magazine editor days. Dr. Peeke hosts the popular HER podcast on the RadioMD network. I talked to her about life, death, fear, relationships, and how online dating is more daunting than terminal cancer at times.

One thing that struck me as I listened to the podcast was how many people reached out to me via Twitter and email in response to the column. I haven’t even had time to write back. However, I hope that I inspired people to get out there and stop being afraid to do things, particularly after a cancer diagnosis. I know it often seems like after cancer, you’re waiting for the other shoe to drop. It might. It might not.

Also, dating is terrible. Fear of rejection is the worst. If I hadn’t gone into it as a fun extracurricular hobby, I don’t think I could have done it. Dating with a disease or disability is hard, but after I realized it kept me in a bad relationship, I realize my fear kept me from being free and happy. Before I had cancer, I didn’t think I was pretty enough or thin enough or cool enough. My nose is funny-looking. There’s always going to be something.

Dating is one of the scariest things I’ve ever done. If I didn’t have my dating app sherpa to share what he calls his “best practices” and to commiserate, I don’t know that I could have done it. He made it fun. And I found love, of all places, on Tinder. That’s crazy.

Please check out the Dating While Dying episode, and if you listen to it as an Apple podcast, don’t forget to rate and review the show. My headshots are old, so I just submitted a recent photo for the HER page. It’s me in a pool during a recent staycation. You know what they say: Dress for the job you want, not the one you have. Happy listening!

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.