On Saturday, September 11 of 2021, my friends, my girlfriend, and I are at the Renaissance festival in Maryland. While I’m wearing butterfly wings and taking cute, posed photos on a little bridge, hospice moves a hospital bed into my parents’ bedroom. Beneath their windowsill is an off-white loveseat that my father temporarily moves into the cramped space of my bedroom, much to the dismay of our sixteen-year-old blind cat who is very confused when she cannot locate her usual sleep spot anymore. Instead, it is replaced by the starchy hospital bed. Our cat is unable to be found for the next few days.
I text my mom the pictures of us at the Renaissance festival. She does not respond. When my girlfriend and I arrive at my parents’ house after the festival, my mom is downstairs in her electric sitting-to-standing armchair that we’re borrowing from my dad’s friend Mike, owner of our local marina, whose father used it when he was dying a while back. She is sitting with my fourteen-year-old niece Kylee, and as far as I can tell, they’re having a good conversation. She seems to be slurring her words a bit, and when she notices us, she demands we try some bread pudding someone has brought over. Neither my girlfriend nor I enjoy bread pudding, but we try it to appease my mom. It sucks, but she can’t see us in the kitchen from her seat in the chair and we stick our bready tongues out at each other and mime-gag. We tell her it’s delicious. We throw our portions away.
My mother is wearing a long maxi-dress, because it’s something she can put on her body without disturbing her skin very much. I’ve always been jealous of her ability to wear maxi-dresses without looking frumpy. I think I’m too short for them. Although, at this point, she had shrunk a few inches even though she is only fifty-seven years old and is now eye-to-eye with me. Before, she was 5’8”, a great source of pride. Her mother (the shortest adult I’d met at 5’0”) had always said 5’8” was the perfect height, although her husband is 6’6” so she might have been a little clouded. I am 5’5” (and a half). Perfectly average. Perfectly horrible for wearing long dresses.
My mom’s exposed skin on her upper body is covered in weeping sores. She’s jaundiced, and she has a deep tan that I have never seen on her complexion before. You can only see the yellow if you stare at her too long. Or if you look her in the eyes. The whites of them have turned yellow. I have been anticipating this to happen, but I had assumed I would be way more grossed out than I am. I have been worried I wouldn’t be able to look her in the eyes. Eye trauma freaks me out. I turn away from movies or television shows that depict eye gouging or stabbing.
Back when I was little, maybe five or six, I hooked a sunfish through the eye, fishing off our pier with my (half-)brother and he had me unhook it—though he had traumatized me into thinking fish fins and scales would cut through the skin of my hand. I grasped the fish with my small hand and pulled the hook back out of the fish. The eye came with it. I know I must have launched the fish back into the creek, screaming the whole time, and I’m certain he was laughing. My brother must have been about twenty-two then. I’m twenty-two now. He’s an asshole.
Even with all of my eye issues, I look my mother in hers, because it is easier than looking at the rest of her face. She is wearing a bright blonde wig because she has not had hair for the last year at least. She has gotten her eyebrows microbladed, which she refuses to acknowledge as tattoos (even though they are, and it’s silly that they’re face tattoos of all things) because she is staunchly against tattoos. Her face is covered in dusty gray peach fuzz, because even though she’s having chemotherapy, chemo does not actually care which hair it decides to rid you of. Chemo has chosen arm, leg, and most of her head hair. Facial hair, it decides, it doesn’t care about. The rest of her face has sporadic dried-blood brown sores in random patches. We do not know what these are.
The sores are allegedly from too much sun exposure while on chemo, but the only sun exposure she endures is when she’s in the passenger seat of the car. She and my dad drive the eight hours from Baltimore to Myrtle Beach to see their friends, and by the time they get there, her legs are swelling to more than twice their normal size, and she sees the first sore develop on her finger. Maybe this is why she sticks to dresses all summer on the off chance her legs swell again. They don’t. The sores, however, are just getting started. We figure out wherever she applies pressure, a sore develops by the next day. They are painful, and burn like fire when they open, weeping yellow fluid that isn’t plasma. The yellow fluid seeps until it dries, and crusts over brown. She buys oversized professional fishing long-sleeved shirts to try and help with sun exposure while traveling in the car. It is too late. The sores are very strange, and once the first one arrives, the rest follow quickly. The one on her finger appears because it is the finger she uses to scroll Facebook or tap out a text. Or throw a Pokéball in Pokémon Go. She starts resorting to using her knuckles, tapping the same keys multiple times to get them to register, the bone of her knuckle making it hard to pick up anything alive touching the screen at all. Her knuckles crust over next.
She has always had a problem with allergies, picking up the habit of swiping at her nose with her hand all the time. She has a wrinkle where the fleshy part of her nose meets the bridge from all the wiping, and she scolds me when I’m a child and pick up the same tick. I don't do it again. She never stops. Because of this, the sores spread to her face.
So, her face is covered in brown crust, gray fuzz, the untouched skin several shades too dark with a yellow undertone, stark synthetic blonde hair, tattooed eyebrows, and pale-yellow eyes. I choose to look at her eyes. Later, I’ll think the color of her eyes reminds me of taking a painting off a white wall of a long-time smoker’s house and being shocked at seeing true white next to what you thought has been white the whole time. You only really notice something’s off when you look at someone else’s eyes. Then, when you go back to hers, the difference cannot be unseen.
She rises from the sit-to-stand chair after pushing what we call the eject button, and silently holds her arm out to Kylee for assistance up the stairs. She puts one foot on the bottom stair and brings her plain black cane up to meet it. Kylee is clutching the arm not holding the cane, making the whole process a bit squished. Her other foot, still on the ground, raises to step on the bottom stair with her other foot and cane. She can then proceed to step onto the next stair. This whole scene takes several minutes. She will not come downstairs again.
—
Before the sores, before the cancer returns, before any of it, I spend significant amounts of time with my mom on the weekends when I don’t make plans with my friends. Since my high school is a forty-minute drive away into Baltimore City, a lot of my friends are also far away, and I can’t drive yet.
When the Pokémon Go phenomenon rocks the nation in the summer of 2016, I download the app like everyone else. I’m not sure what I’m thinking is going to happen since I live in the woods and Pokémon only spawn in public places right now, but I make the mistake of telling my mother that I’ve downloaded the app.
“You know, kids are getting hit by cars from that app,” she informs me.
“What am I, four? I know how to look both ways. I’m not about to die for a Pikachu,” I say, incredulous.
Later that week she informs me that she has heard on the radio that children are breaking and entering for Pokémon.
“Do you really think I’d do that?” I’m confused. I’ve barely played the game. Every time I open the app, the only Pokémon around are rats and pigeons. I’m getting sick of rats and pigeons. I close the app.
She throws up her arms. “I don’t know what you’d do! I didn’t think you’d be into this game at all, knowing all the bad things happening with it.”
“I literally don’t know what you mean. I think you’re falling into some kind of anti-children’s games conspiracy sector of conservativism,” I say, and she looks furious. “I only hear about these weird extreme situations from you, and I don’t really know anyone who plays the game hardcore like that. Maybe you need to download it to understand what it’s about, because it’s really not that serious.”
And I’m not really that serious either, but she’s never been able to tell. I watch as she downloads the app.
—
It is now Sunday, September 12, 2021, and when I slip into my parents’ room for a while, my mom is less talkative. She is set up in the hospice bed now. I call my Aunt Cathy, her older sister, over to our house, and our designated hospice nurses come over as well to meet us all and talk about what is happening. My mom and Aunt Cathy’s best friend Peggy comes over too.
My mom waves goodbye to my girlfriend, who has stayed the night, and I walk her out to her car, as she has to leave to go home to the Eastern Shore of Maryland for work the next day.
“I think it’s going to happen soon,” I say to her. “Did you notice the difference between yesterday and today?” She has.
I hold onto her for longer than usual, glance at the house to see if any of the extended family is watching, and when I deem it safe, I kiss her goodbye. After she pulls out of the driveway, it strikes me that this is the last time my girlfriend will see my mom, and I wonder if she has the same realization. I don’t ask. I go back inside.
Aunt Cathy stops me before I go back upstairs. She grabs ahold of my arm. “That girl is such a good friend,” she says, tears in her eyes and a waver in her voice.
I force a smile and nod. “Uh-huh, yup.”
My Catholic and politically conservative mom is in charge of telling similarly Catholic and politically conservative Aunt Cathy about my sexuality. It has not happened yet.
There is a balcony attached to my parents’ room, the windows directly next to my mom’s hospice bed looking out to it. Beyond the balcony, we can see the creek. We live in a waterfront house, deep in the woods with no neighbors. Normally it’s lonely, but right now it’s peaceful. The creek is glass, only disturbed by squabbling waterfowl. There’s an antique flowerpot sitting on the balcony, and we prop yellow mums, still in their nursery pots, on top of the flowerpot, so my mom can see a splash of yellow in the window and not just the still creek. We sit on plastic outdoor chairs that my dad carries upstairs and onto the balcony to accommodate the extra bodies. The chairs are bright teal, having been spray painted by my dad on a whim one day, against the wishes of my mother. The paint is peeling away from the chair, not reacting very well with the elements over the years, and I pick at it and watch it flake off onto the wooden planks at my feet. We watch my mom soundlessly through the dusty window as she answers some questions the other nurse must be asking.
The other hospice nurse, outside with us, is called Tamara, I think. She asks the basic questions:
What kind of cancer is it?
This one is easy; I say it to everyone who inevitably asks. She has Stage IV Metastatic Breast Cancer. At this point, I know more about it than the average person and the science behind it all. I keep a list in the notes app on my phone of all her medications, all of the treatments she’s taken, and all of the possible trials she could sign up for. It doesn’t serve us much use now, but I like to think it’s useful information. It makes me feel like we have all our options out in front of us.
Lynparza
Gem-carbo + Trilaciclib
Keytruda
Piqray
Doxil + Adriamycin
Xeloda + Ixempra
Xeloda + Docetaxel
Eribulin + Pembro
Cisplatin
OPDIVO
Ibrance + Arimidex
Fenbenzole
Kadcyla
Enhertu
Xtandi
Niraparib
Ixempra
With each appointment, the list of doable treatments and trials grows smaller and smaller, and the prognosis grows worse. We don’t delete the treatments from the list though. Just in case.
How long has she had it?
The short answer that we tell Tamara is she’s had diagnosed breast cancer for the last eight years. The long answer is she has a lump on her breast in 2010, but every doctor she goes to says, “It’s just a cyst, no need to worry!” But she worries, and the doctors brush her off until she demands a biopsy in 2012, and she is diagnosed with breast cancer over the phone while we’re eating salmon at the dinner table, and by then it is Stage III-C because the cancer has spread to her lymph nodes.
She has a double mastectomy in early 2013 while I am thirteen years old and in the eighth grade. I am in school on this day, at my private Catholic school, carrying around a figure of St. Peregrine encased in a resin stone in my pocket, turning it over and over with my hand. St. Peregrine is the patron saint of cancer patients, so I am told. I glance at the clock frequently, wondering what the surgeons are doing to her at every moment.
As I do a lot during this year, I fake being sick to my literature teacher. Mrs. Gallagher is old and mean and wears a Baltimore Ravens windbreaker every day. She drinks an extra-large Diet Coke from McDonald’s every morning, and she has only one arm—she lost the other in a motorcycle crash according to the rumor mill—that she uses to throw sticks of chalk at the boys who misbehave. She calls my friends Jack and Ben Stupid 1 and Stupid 2, and they fight over who gets to be number one. She loves me. She knows I already know all of the material, so I’m free to walk the halls of the school.
St. Peregrine comes with me, and we walk together. My feet tap against the linoleum, as I have stolen Mrs. Gallagher’s thumbtacks from her desk (along with a fistful of candy), pressed them into the soles and toes of my uniform shoes, and turned them into makeshift tap-dancing shoes. This cheers me up a bit, and I jump from blue tile to blue tile, avoiding the white ones. I sneak down into the hidden room in the elementary school cafeteria that the staff tries to pretend doesn’t exist. Next to the Got Milk? poster that teaches us there are 144 items in a gross, there is a door blended into the wall, no knob, and the only way in is to push very hard. Immediately behind this secret door is a small hallway leading to another door, this one with a knob. This door is marked clearly with signs that say do not enter, asbestos! but I am thirteen and do not know what that is.
I open the asbestos door, and the hidden room is just a small square. It’s probably fifteen by fifteen, but it felt larger when I was smaller. There’s nothing in it. I lean against the wall and sink to the floor, getting white powder on my green tartan skirt and my navy knee-high socks. I stay down there for a while, reading Wattpad stories on my iPod Touch. The lower school doesn’t have Wi-Fi, but the high school does, and the signal just barely reaches across the parking lot, and the password is just cougars123 which is my third guess. My teacher thinks I’m at the nurse’s office, and the nurse thinks I’m in class. It’s a good system. No one comes looking for me.
My mom’s surgery goes well. I watch my dad flush her drains every night, measuring the liquid each time, keeping track of the healing in a way I don’t understand. We look up a local tattoo artist named Vinny whose specialty is tattooing nipples on women who have mastectomies. Her internal battle between getting new nipples versus not having tattoos goes on for a while. She doesn’t go.
She is prescribed injections that cost more money than I’ll ever see in my lifetime, and I am told that we are lucky we have insurance. While my dad is away, playing golf on Wednesday evenings, my mom and I have a routine established. We go to our local Don Pablo’s restaurant, and she orders a large margarita on the rocks with salt, her signature drink. We split chips and salsa and the chicken fajitas. We go home, and I learn to give her injections in the fat of her belly.
“You’re way better at this than your father,” she says to me. “He sticks it in too slowly, like he’s afraid to hurt me, but it just hurts more when it lasts longer.” I, apparently, stab her at her preferred speed.
In 2014, she is cancer-free. They assure us. There is normally a bell in oncology that a patient in remission gets to ring, but my mom opts not to. “Superstition,” she claims, but I see the look on her face while she receives chemo in the infusion center and the sound of the bell fills the room. The rest of the cancer patients clap and lightly cheer, but I notice the strain on their faces too. Many of them know they will never get a chance to ring the bell. Superstition, perhaps, but I know she’s just being polite.
In 2019, I am at the dermatologist’s office. I have just come home from my sophomore year of college, and summer is starting. I am catching up on all of my doctor’s appointments that I have missed while being away. My mom has her own appointment on the floor above the oncology center, where she has been going every three months for the last five years to get an infusion to keep the cancer away. My mom is supposed to meet me at the dermatologist’s. I hate having doctor’s appointments alone; I’m nineteen, but I feel sixteen at most. I waive all of my medical privacy rights so my parents can call any of my doctors at any time to check my medical records. I text my mom, but she does not show up in time for the appointment. I’m sorry baby, she texts. I’ll see you at home. Alone, I am diagnosed with polycystic ovarian syndrome (by my dermatologist, the only doctor I have who listens to me), and I am told I may not be able to carry my own children. I only go to this appointment because I am having an issue with acne. The intake form asks when my last menstrual cycle is, and I write LOL, as I have no idea, but it’s been months. Maybe eight. My dermatologist does not like this answer. I leave his office with a prescription for antibiotics for the acne and a referral to get an ultrasound to inspect my ovaries and uterus. I don’t even know if I want kids; I’ve sworn for the last several years that I don’t, but that was mostly for show, trying to convince myself I don’t want kids to make it easier on myself when I inevitably end up with a woman and don’t have a ton of money to spend on fertility, but the idea of being pregnant has always intrigued me. I’d offered to be a surrogate for my gay male friends. I cry the entire forty-minute drive home.
My mom arrives home shortly after me.
“I need to tell you something,” she starts.
She gathers my dad and me onto the living room sofa. She cries.
“The cancer—it’s back. It’s worse. I’m sorry, I’m sorry, I’m sorry,” she apologizes to us. My dad is crying. I am numb.
“It’s not your fault.” It’s the only thing I can think to say to her, and then, “how worse?”
We all are standing now, and hold each other close, a triangle of a hug, limbs and breath shaking.
“It’s Stage IV, it’s in my bones. Oncology called while I was upstairs about to get the infusion. I had to go down there to make an appointment. Obviously, I skipped the infusion, since it didn’t prevent shit. I get a full scan tomorrow.”
We stand there. I try to make eye contact with my father, and he closes his eyes. My own eyes burn, and my chest is tight. I’ve already cried myself out today, but I feel like my tears have been wasted. I don’t tell them about what the dermatologist said. Not yet. One crisis at a time, I guess, though mine feels worlds away and so much smaller in comparison. I think about my mom, learning she has terminal cancer and texting me her genuine apologies for not making it to my doctor’s appointment. I think about the both of us driving home at the same time, driving the same roads, both of us crying, one of us with death in her bones.
“It’s going to kill me,” she finally says. “I’m so sorry, guys.”
Why did you decide on hospice now?
In the two years since her terminal diagnosis, we have exhausted all available treatment options. We have gotten second and third opinions, and I have a Google search history and a yellow legal pad full of questions like: does drinking lots of water actually decrease bilirubin levels? and what does renal failure look like? She tries to get me to smell her urine at some point, but I politely decline, and she says it looks like tea. I buy a (very overpriced) large glass container full of beetroot juice, and she drinks maybe a third of it. She says it’s gross, and buys powdered beetroot juice to mix into other, better-tasting drinks. This, apparently, is even more gross.
A month earlier, the evening of August 8th, I wait until my dad is outside, covering up our boat in preparation for rain, and I sit in front of her on their bed. I have gotten many crystals recently, giving into my inner crow who loves shiny things, and I am giving my mom a tour of them.
“This one’s carnelian, and this one’s ocean jasper, and this one’s just clear quartz,” I say, “but clear quartz when charged properly apparently sucks bad energy out and promotes healing.”
I have a large chunk of clear quartz a little larger than the size of my fist. His name is Large Thomas.
“I’m gonna put Large Thomas outside tonight, and the moon will charge him, and then you can take him to your next doctor’s appointment and maybe he’ll help a little.” She picks up Large Thomas.
“God, he’s heavy,” she says, and pets him like he’s a cat. I take him back from her.
“He’s not ready yet,” I say. I pause. “Do you believe in angel numbers and all that?” I ask.
She shrugs. “I mean, I don’t think I personally do, but I won’t discount it.”
I contemplate. “Can I show you a TikTok?” I ask, already pulling my phone out of my pocket.
She rolls her eyes. “Fiiiine,” she says, unimpressed.
The TikTok is about manifestations, and how they are most potent tonight, on 08/08 at 8:08pm. To manifest, according to this TikTok, we need bay leaves, a red writing tool, and a way to burn them. She lets me gather the things. We write in red China marker on the bay leaves what we want.
“Is there a limit to how many we can do?” I wonder aloud.
“I hope not,” she says, “I have a lot to manifest.”
I write on mine: peace and happiness, no pain, and I write NED on my last one. NED is a cancer miracle—No Evidence of Disease. I don’t show her that one. She writes on hers: good mental health, happiness for family, and acceptance. The next step is to burn them at 8:08pm, so we wait about five minutes for the time to be right, and I use the grill lighter to light a large Wood Wick candle (the Fireside scent) that until now has been just for display and never lit
(which I’ve always thought has been a waste), and we step onto the balcony of their bedroom. It works better if it’s outside, apparently. I light the bay leaves from the flame of the candle, and we watch in silence as they burn away, my dad tinkering with the boat in the background, not noticing us on the balcony.
“Should we be humming? I feel like we should be humming,” she says, and we giggle. I think at the same time we realize how weird it is to be staring at a decorative candle eating some leaves, and the giggles get louder. The melted candle wax catches the flakes of bay leaves that fall from the flame, and we click the lighter at them to see if they’ll burn any more while floating in the pool of gray. I leave Large Thomas out there on the balcony so he can soak up some moonlight. We leave the candle out there too to harden.
The next day, August 9th, I slip Large Thomas into her purse, and he follows her to all of her appointments. On August 11th, her second opinion oncologist at Johns Hopkins tells her of one final treatment option he’s discovered. A few days ago, there were none left. Her primary oncologist advises against it, but we decide we will exhaust all treatments, that way we can say we actually do try everything. We praise Large Thomas, and she starts sleeping with him on her bedside table.
The treatment does not make much of a difference, it turns out. It makes her feel sick, but she already felt sick, and we are no strangers to adverse side effects, so it’s worth the attempt. Her second opinion doctor thinks more rounds of treatment will kill her faster. She stops after a few rounds, and I throw Large Thomas out into the backyard for a few days to recharge. In the meantime, every at-home remedy for liver and kidney failure is attempted. Her bilirubin levels change a little, but her white blood cell count worsens. We call hospice.
—
I don’t know how or when she does it, but my mom easily surpasses me in Pokémon Go. I am a casual player. I open the app while we’re at the mall and spin a PokéStop at the Sprint store for some more Poké Balls. I begrudgingly catch the rats and pigeons and then trade them away, so they don’t take up my allotted amount of Pokémon. But my mom comes home from work with Pokémon I’ve never seen.
“What on earth is that?” I ask, looking at the pink monstrosity on her screen.
“A Lickitung,” she says proudly. It looks like if a light pink frog were standing on its hind legs. And if the frog had a skunk tail. And if the frog had a large tongue that had an accompanying animation that licked the screen up and down up and down up and down.
“He’s licking us!” I am outraged. I want one.
At the beginning of the app, the highest level was twenty, and she hit level twenty before anyone I know.
“How are you doing this?” I demand to know. I am a measly level sixteen. Even the Pokémon Go YouTubers my mom has taken to watching before bed are still level nineteen, almost twenty.
She shrugs. “I have it open on my desk at work. There are three PokéStops I can reach from my desk. You can spin them every four minutes. I go on walks at lunch to hit the Gyms [the Pokémon Gyms—for battling] at the end of the block, and Pokémon just spawn at my desk all day. I just catch them when they appear. And I don’t run out of Poké Balls because of all the items I can get from spinning the PokéStops every four minutes. It’s a great system.”
We start leaving for school earlier.
“You know, Mr. Wallace doesn’t even unlock the doors until seven,” I say at six when we slide into the car. Our projected ETA is six-forty.
“Perfect, we can hit some PokéStops,” she says, and I internally groan. She passes me her phone, already open to the app, and I sit in the front seat spinning PokéStops with both thumbs. She can’t see her phone from where she sits in the driver’s seat, but she dictates to me which Stops are worth spinning anyway. She recites to me which Stops are now Gyms. She tells me about her Pokémon Youtubers theorizing that more levels will be coming soon. She tells me that soon we’ll be able to request where PokéStops can go, and maybe we’ll be able to get one closer to our house.
—
That Sunday, September 12 is my mom’s last speaking day. As the day goes on, she opens her mouth less and less. I think the last real thing she eats is the bread pudding from the night before. I bring her bowls of ice chips, and she sucks on them. I bring her pickles and cheese, and she has half a bite of each, but stops. She wants more ice chips. I oblige.
Aunt Cathy is downstairs washing new sheets my dad’s mom brought over. The hospice bed is twin-sized, and we do not own any twin sheets. My dad and I are alone with my mom speaking softly to her. My dad is on their bed, holding her hand across the gap between the beds.
“Hey, did you ever tell Aunt Cathy about…me?” I ask. Her eyes widen, and before she can apologize, I say, “It’s okay, we’ll take care of it. It’s not important right now, I just wanted to know.” I stroke the small amount of gray hair she’s managed to grow back on her head.
“I’m sorry,” she says anyway, and I shake my head.
“Don’t, it’s not your fault.”
I think about anything else that we might need to say to each other. I think about a fight we have a year before, where she asks, “Why don’t you like me? I don’t even think you love me sometimes. I think you don’t like anybody. Aside from Whitney, I have no proof that you care about anyone at all.”
She says all of this viciously and unprompted. Whitney is my roommate and one of my best friends. Whitney stands up for me when I don’t stand up for myself, including against my mother. My mom does not like this. My mom does not like Whitney.
This fight happens because while we are baking pretzels in the oven, my mom says something cruel that I don’t remember anymore. I tell her she sounds like her father. She laughs and thanks me. I say that she misunderstands, and I don’t mean it as a compliment, that she sounds mean. She is quiet. When I take the pretzels out of the oven, she does not reach for hers, and instead makes a scene and storms upstairs. My father is distraught.
“What did I do?” he asks me.
“It’s not you, it’s me. I’ll fix it.”
I bring her pretzel upstairs with me. She is in bed. She stares at me and does not speak.
“You should eat this, it’s pretty good,” I say to her, holding out the pretzel and trying to break the ice. The “why don’t you like me” bit comes next. I think of this fight often, as I don’t know what to say in response to it. On this night, I put the pretzel on her bedside table and say something like “That’s unfair of you to say, and I’m sorry you feel that way, but I just meant to tell you that I didn’t like how you were treating me, not that I don’t like or love you. It’s fucked up of you to say that, actually, and you know it’s not true.”
I go back downstairs, and she does not follow. She pretends it does not happen the next day and all the days after.
Now, though, in the hospice bed, I know if I don’t say something, I’ll regret it.
“I just want you to know,” I start, searching her yellowed eyes, “that I love you so much.”
She smiles. “I love you too, baby.”
The next bit feels weird to say, but I manage it. “I don’t just love you though, I do like you too. I just really need you to know that.”
Her eyes well up with fluids she cannot afford to spare. “That’s so nice.”
—
Over the years, my dad’s Wednesday evening golf ritual turns into Wednesday and Saturday and Sunday, and when our local Don Pablo’s closes down (rest in peace), my mom and my tradition turns into getting Dunkin’ frozen coffees and playing Pokémon Go undisturbed for hours. During our hundreds of hours in the car traveling from the mall to the local community college and inevitably back to the mall hunting for Pokémon, we cultivate a playlist together.
The radio has lost its appeal. She normally keeps it on conservative talk radio at a grating volume, and when it’s not, the influx of commercials makes me stir crazy and itchy. When we get a new car in 2019 (an impulsive I’m-dying-and-I-need-to-ensure-my-family-has-nice-things-before-I’m-gone purchase, no doubt) I convince her to allow me to play Spotify instead of the radio. This is a tremendous accomplishment for my propaganda-tired ears. I try to queue songs that I think she’ll like, but aside from the songs I know she doesn’t outright hate from our radio music days, I don’t know what she likes. I don’t ask what she likes. I play my own music instead and experiment with how much I can get away with before she complains.
She tires of my boyband music quickly. I flip over to Broadway show tunes. This lasts us for a while, but we don’t have similar taste, it turns out. She prefers the classics, like Pippin and A Chorus Line, and I’m partial to Heathers and Dear Evan Hansen, both featuring the death of children, and both therefore banned from the car. They’re too sad, she says. We listen to Hadestown which depresses her (and is banned), and we listen to Hamilton so much that we memorize every lyric and cannot stand listening to it anymore. We listen to everything we can stomach, and finally we have to move onto something else.
“So, I’ve had a thought,” I say after she rejects my Wicked suggestion.
“God knows where those come from,” she says, a phone in each hand, spinning a PokéStop expertly with both of her thumbs. We’re parked at the local community college and there is an abundance of Stops and Pokémon spawns. My mom has her own account open on her phone and a backup account on a spare phone she bought from her boss. There are four phones between the two of us. All for Pokémon.
“What if we make a playlist of songs we both like from any genre and time period that we can just put on while we’re in the car,” I suggest. She blinks at me.
“What have we been doing this whole time?” she muses.
“Beats me,” I say.
“Get on it!” she says, and I close Pokémon to open Spotify. I create a new playlist and entitle it songs that make me indescribably happy to set the necessary vibe.
“I’m gonna put some stuff from Mamma Mia! on here,” I warn, and she sighs.
“Not too much, please,” she says, using both thumbs to throw Pokéballs in opposite directions to attempt to catch a Pidgey. They both land. Both phones throw animations in sync that say Nice!
“You’re wasting Poké Balls on Pidgeys,” I say. “They suck.”
“They do,” she agrees. “But they’re still worth points, and that’s why you’re so far behind. Gotta catch ’em all, baby.”
My mouth falls open. “How do you even know that catch phrase? I never watched Pokémon! You never watched Pokémon!”
She winks.
—
On Monday, September 13, she sleeps. My dad informs me that the hospice pamphlet says that when patients start to sleep, they’re close to dying, but they can still hear, they think. The hospice nurses ask if we want music therapy, and my dad asks what that entails, and they tell us that a man with a guitar will show up to our home and play live music. We politely decline.
I put my Spotify on my dad’s JBL speaker instead. I pull up the songs that make me indescribably happy playlist, now over 6 hours long. I play it now while she sleeps. I put the speaker on the windowsill next to Large Thomas, and I think I see movement in her face when one of her chosen songs comes on, and that’s good enough for me.
My dad says she opens her eyes whenever he tells her he loves her, and he doesn’t leave her side. I open her phone and catch a Pokémon for her to continue her daily streak. It would feel wrong for it to end. While I’m there, I text her friends and coworkers that if they want to come by the house and see her, they probably should soon. All of them do.
The hospice nurse comes by to check on her and presses on her stomach. It is very hard. She inserts a catheter, and immediately the pressure is released, the attached bag filling with tea-colored fluid. I don’t think she’s been to the bathroom since Saturday, and I feel bad about the pain this inevitably causes that she couldn’t voice. I don’t know which is the last time she opens her eyes.
The rest of the day is slow, just sitting by her bedside, watching people come visit and speak to her. My dad and I go through the dresses in her closet and pick out a blue maxi dress for her to be buried in. It feels wrong to do so while she’s still alive, but it’s something to do. We go through her jewelry and pick out a rosary that matches the blue in her dress. I grab the prayer blanket that oncology gives her. A bunch of ladies in a sewing circle sit around praying while they make them. The prayer blanket is also blue. I crochet a blue scarf to add to the mix. She gets cold easily, and I imagine six feet below the surface must be cold. We worry she’ll pass away overnight while we’re sleeping. We don’t sleep.
—
My mom’s Pokémon YouTubers are correct most of the time. The Pokémon levels do increase—this time to level forty. My mom is the first person I know to reach level forty. I’m stuck on level thirty-two when she does. She’s millions of XP ahead of me. She starts buying Google Play Store gift cards so she can spend real money in the game. She buys Pokémon accessories, like the Pokémon Go Plus which is a small wristwatch that vibrates and changes colors to tell the user there are Pokémon nearby, and if the user presses the button on the watch, it can catch Pokémon for them and spin PokéStops all without the user having to be on their phone. She clips it onto her purse.
We take a trip to Longwood Gardens in Pennsylvania to look at the flowers during the summer. This is around the time we learn about nests in Pokémon. Nests are when a specific Pokémon will spawn in large quantities in an area for about two weeks. The Pokémon spawning in Longwood Gardens was a Wobbuffet. We spend more time crying at the sheer amount of Wobbuffets around than looking at the in-bloom flowers.
Wobbuffets are like if you tried to imagine a bright blue octopus with only four stubby legs, standing at attention in the military. They look completely ridiculous, and they are also one of the Pokémon that have a visible difference between the male and female versions.
“What is that?” I screech, pointing my finger at the Wobbuffet dancing in the tulips on my phone screen. My mom whips her head around.
“Oh my God,” she says, “which one was it?” I tap the same Wobbuffet on her phone I’ve just touched. The Wobbuffet materializes on her phone, the same bright blue we’ve grown accustomed to in the last twenty minutes we’ve been at the garden, but over the zigzag mouth on this one is a pair of bright pink lips.
“She’s beautiful,” my mom declares, and we both stick out our lips as much as we can to imitate her.
“It’s going to be such a bitch checking all of their stats later,” I say after we catch the fiftieth.
“Oh, I almost forgot to tell you!” my mom says. “I found a third-party app that checks their IVs, and it’s accurate, like, to the number. It’s just a widget for me.”
“Oh my God, that’s crazy,” I say, but I’m also impressed. I don’t know what IVs are, but I’m assuming it’s another word for statistics.
“I’m not sure if it’ll work on your phone the same way it’ll work on mine with the whole Apple/Android thing, but I can always just check your IVs for you,” she says.
“Oh my God, please do it for me,” I say.
She rolls her eyes. “I don’t want to do it all for you. That’s no fun.”
“The clean-up afterward is no fun,” I say, wrinkling my nose. “This is what’s fun. The Wobbuffet of it all.”
She laughs. “I kind of like the clean-up,” she admits. “It’s a level of organization and statistics and only keeping what’s best that really speaks to me.”
“Mmm see, that’s where we differ,” I say. “I forget any of this exists the moment the app is closed.”
Her face falls. “Oh.”
“Not in, like, a bad way,” I hurry to explain. “Just that when I’m on my phone, my brain wants to read or text someone. If there aren’t Pokémon nearby, I don’t think about opening the app.”
She nods, but she’s not as enthusiastic as she was before. I don’t know how I manage to ruin every interaction we have, but somehow, I always do. It’s like she has a version of me that exists in her head, and every time I speak, I remind her that that Holly doesn’t exist.
To be fair to her, I suppose I do a bit of the same. I spend a lot of time assuming the things I say won’t get taken the wrong way, and then I spend even more time trying to make up for it when they do.
According to my Pokédex, we catch over one hundred Wobbuffet.
—
She dies Tuesday afternoon, September 14.
In the morning, we request Anointing of the Sick to appease the Catholicism, but our go-to priest doesn’t get the message until the following day and apologizes profusely when he does. Her Baptist friend and ex-coworker prays over her instead when he visits, saying a few words. I can’t pay attention to it, but the cadence of his voice sounds soothing and lovely, and I tell him as much. I put the happy playlist back on, and we sit with her.
The hospice nurse comes over. She isn’t scheduled to, but she does. She helps my aunt change the sheets on the bed by rolling my mom from one side to the other, and it would be comical if she didn’t groan in pain as it happened. This is the first sound she’s made since Sunday. It is also the last sound she makes. A few minutes later, we are standing around the foot of my parents’ bed, away from my mom. I am the only one with eyes still on her. The hospice nurse is saying something I’m not listening to. I am watching the rise and fall of her chest. It’s slow. It stops. I wait a moment, expecting it to rise again. It doesn’t.
“I think…I think she stopped breathing,” I say. The hospice nurse looks at her.
“It’s time,” she says.
I glance at the clock, and it’s 3:35pm. Time of death, I think to myself.
The song playing softly from the speaker is Elton John’s “I’m Still Standing,” and I hope to God no one notices. We gather around her bed. The hospice nurse says she is actively dying, that she’s not fully gone yet, but I don’t know how she knows that for sure. I stroke her head and her left arm. My dad has her other arm and her face in his hands. Our other family members are just, around, I suppose. I’m not looking at them. I’m looking at her chest. It looks wrong to see no movement, and yet still feel the warmth in her skin. The hospice nurse lets us stay there for a while, but she steps into the hall to call the funeral home. They’re sending someone to come collect her body. She’s a body now. The hospice nurse removes the catheter.
“She doesn’t need this anymore,” she says sort of fondly and I’m equally impressed with her ability to keep cool during devastating situations but also creeped out.
I leave the room to start making phone calls. I call Mommom first, my dad’s mom. It’s a bit of a blur. I call Kylee’s mom; she’s at volleyball. I think I call my brother. I can’t remember. I stop calling after that. I leave my aunt to call her and my mom’s father and their brother. Mommom arrives quickly, grasping my mom’s hand. My dad is still at her side. I don’t want to touch her again. I don’t want to know how she feels as the life leaves. I email my professors. I won’t be in class this week. Or next.
The funeral home representatives arrive alongside my brother. He comes upstairs to see her and make sure our dad is okay. He is not. I don’t watch the next part; I am advised against it. I am downstairs with my aunt when they bring the now-full body bag downstairs. My brother is helping them carry it. I watch them load it into the car (hearse? I cannot tell).
When my mom’s mom dies the year before, I am sitting in the hospital room with my mother, my mother’s brother, and my grandmother’s body. There is a DNR on file, but the EMTs try to revive her anyway, leaving her with purple, bloody lips. She is 90 years old. We sit there in silence for a while, and my mom cleans her face with a small pack of baby wipes she keeps in her purse.
“We now live in a world where we don’t have a mom,” my uncle says. We do not respond.
I think of this now, as the hearse pulls away. I now live in a world where I don’t have a mom. I go back upstairs and hug my father. It’s sort of like the family hug from back when she’s re-diagnosed, but there’s a third of it missing.
“We’ll get through it,” I tell him because what else can I say? He nods against my shoulder.
“We will.”
My eyes land on the Wood Wick candle on her vanity, and I focus on the bits of bay leaf still left behind. Peace, I remember. Acceptance. I take a deep breath, and I feel my dad follow suit. The speaker is still playing. Meat Loaf fades out, and Gloria Gaynor fades in with “I Will Survive,” and I smile a bit. Yeah, I suppose we will. I pull back from the hug with my dad, and I reach for my mom’s phone. I unplug it from where it’s charging, and I pocket it. I’ll catch more Pokémon later.
Holly Bergman
Not Speaking Ill
On Saturday, September 11 of 2021, my friends, my girlfriend, and I are at the Renaissance festival in Maryland. While I’m wearing butterfly wings and taking cute, posed photos on a little bridge, hospice moves a hospital bed into my parents’ bedroom. Beneath their windowsill is an off-white loveseat that my father temporarily moves into the cramped space of my bedroom, much to the dismay of our sixteen-year-old blind cat who is very confused when she cannot locate her usual sleep spot anymore. Instead, it is replaced by the starchy hospital bed. Our cat is unable to be found for the next few days.
I text my mom the pictures of us at the Renaissance festival. She does not respond. When my girlfriend and I arrive at my parents’ house after the festival, my mom is downstairs in her electric sitting-to-standing armchair that we’re borrowing from my dad’s friend Mike, owner of our local marina, whose father used it when he was dying a while back. She is sitting with my fourteen-year-old niece Kylee, and as far as I can tell, they’re having a good conversation. She seems to be slurring her words a bit, and when she notices us, she demands we try some bread pudding someone has brought over. Neither my girlfriend nor I enjoy bread pudding, but we try it to appease my mom. It sucks, but she can’t see us in the kitchen from her seat in the chair and we stick our bready tongues out at each other and mime-gag. We tell her it’s delicious. We throw our portions away.
My mother is wearing a long maxi-dress, because it’s something she can put on her body without disturbing her skin very much. I’ve always been jealous of her ability to wear maxi-dresses without looking frumpy. I think I’m too short for them. Although, at this point, she had shrunk a few inches even though she is only fifty-seven years old and is now eye-to-eye with me. Before, she was 5’8”, a great source of pride. Her mother (the shortest adult I’d met at 5’0”) had always said 5’8” was the perfect height, although her husband is 6’6” so she might have been a little clouded. I am 5’5” (and a half). Perfectly average. Perfectly horrible for wearing long dresses.
My mom’s exposed skin on her upper body is covered in weeping sores. She’s jaundiced, and she has a deep tan that I have never seen on her complexion before. You can only see the yellow if you stare at her too long. Or if you look her in the eyes. The whites of them have turned yellow. I have been anticipating this to happen, but I had assumed I would be way more grossed out than I am. I have been worried I wouldn’t be able to look her in the eyes. Eye trauma freaks me out. I turn away from movies or television shows that depict eye gouging or stabbing.
Back when I was little, maybe five or six, I hooked a sunfish through the eye, fishing off our pier with my (half-)brother and he had me unhook it—though he had traumatized me into thinking fish fins and scales would cut through the skin of my hand. I grasped the fish with my small hand and pulled the hook back out of the fish. The eye came with it. I know I must have launched the fish back into the creek, screaming the whole time, and I’m certain he was laughing. My brother must have been about twenty-two then. I’m twenty-two now. He’s an asshole.
Even with all of my eye issues, I look my mother in hers, because it is easier than looking at the rest of her face. She is wearing a bright blonde wig because she has not had hair for the last year at least. She has gotten her eyebrows microbladed, which she refuses to acknowledge as tattoos (even though they are, and it’s silly that they’re face tattoos of all things) because she is staunchly against tattoos. Her face is covered in dusty gray peach fuzz, because even though she’s having chemotherapy, chemo does not actually care which hair it decides to rid you of. Chemo has chosen arm, leg, and most of her head hair. Facial hair, it decides, it doesn’t care about. The rest of her face has sporadic dried-blood brown sores in random patches. We do not know what these are.
The sores are allegedly from too much sun exposure while on chemo, but the only sun exposure she endures is when she’s in the passenger seat of the car. She and my dad drive the eight hours from Baltimore to Myrtle Beach to see their friends, and by the time they get there, her legs are swelling to more than twice their normal size, and she sees the first sore develop on her finger. Maybe this is why she sticks to dresses all summer on the off chance her legs swell again. They don’t. The sores, however, are just getting started. We figure out wherever she applies pressure, a sore develops by the next day. They are painful, and burn like fire when they open, weeping yellow fluid that isn’t plasma. The yellow fluid seeps until it dries, and crusts over brown. She buys oversized professional fishing long-sleeved shirts to try and help with sun exposure while traveling in the car. It is too late. The sores are very strange, and once the first one arrives, the rest follow quickly. The one on her finger appears because it is the finger she uses to scroll Facebook or tap out a text. Or throw a Pokéball in Pokémon Go. She starts resorting to using her knuckles, tapping the same keys multiple times to get them to register, the bone of her knuckle making it hard to pick up anything alive touching the screen at all. Her knuckles crust over next.
She has always had a problem with allergies, picking up the habit of swiping at her nose with her hand all the time. She has a wrinkle where the fleshy part of her nose meets the bridge from all the wiping, and she scolds me when I’m a child and pick up the same tick. I don't do it again. She never stops. Because of this, the sores spread to her face.
So, her face is covered in brown crust, gray fuzz, the untouched skin several shades too dark with a yellow undertone, stark synthetic blonde hair, tattooed eyebrows, and pale-yellow eyes. I choose to look at her eyes. Later, I’ll think the color of her eyes reminds me of taking a painting off a white wall of a long-time smoker’s house and being shocked at seeing true white next to what you thought has been white the whole time. You only really notice something’s off when you look at someone else’s eyes. Then, when you go back to hers, the difference cannot be unseen.
She rises from the sit-to-stand chair after pushing what we call the eject button, and silently holds her arm out to Kylee for assistance up the stairs. She puts one foot on the bottom stair and brings her plain black cane up to meet it. Kylee is clutching the arm not holding the cane, making the whole process a bit squished. Her other foot, still on the ground, raises to step on the bottom stair with her other foot and cane. She can then proceed to step onto the next stair. This whole scene takes several minutes. She will not come downstairs again.
—
Before the sores, before the cancer returns, before any of it, I spend significant amounts of time with my mom on the weekends when I don’t make plans with my friends. Since my high school is a forty-minute drive away into Baltimore City, a lot of my friends are also far away, and I can’t drive yet.
When the Pokémon Go phenomenon rocks the nation in the summer of 2016, I download the app like everyone else. I’m not sure what I’m thinking is going to happen since I live in the woods and Pokémon only spawn in public places right now, but I make the mistake of telling my mother that I’ve downloaded the app.
“You know, kids are getting hit by cars from that app,” she informs me.
“What am I, four? I know how to look both ways. I’m not about to die for a Pikachu,” I say, incredulous.
Later that week she informs me that she has heard on the radio that children are breaking and entering for Pokémon.
“Do you really think I’d do that?” I’m confused. I’ve barely played the game. Every time I open the app, the only Pokémon around are rats and pigeons. I’m getting sick of rats and pigeons. I close the app.
She throws up her arms. “I don’t know what you’d do! I didn’t think you’d be into this game at all, knowing all the bad things happening with it.”
“I literally don’t know what you mean. I think you’re falling into some kind of anti-children’s games conspiracy sector of conservativism,” I say, and she looks furious. “I only hear about these weird extreme situations from you, and I don’t really know anyone who plays the game hardcore like that. Maybe you need to download it to understand what it’s about, because it’s really not that serious.”
And I’m not really that serious either, but she’s never been able to tell. I watch as she downloads the app.
—
It is now Sunday, September 12, 2021, and when I slip into my parents’ room for a while, my mom is less talkative. She is set up in the hospice bed now. I call my Aunt Cathy, her older sister, over to our house, and our designated hospice nurses come over as well to meet us all and talk about what is happening. My mom and Aunt Cathy’s best friend Peggy comes over too.
My mom waves goodbye to my girlfriend, who has stayed the night, and I walk her out to her car, as she has to leave to go home to the Eastern Shore of Maryland for work the next day.
“I think it’s going to happen soon,” I say to her. “Did you notice the difference between yesterday and today?” She has.
I hold onto her for longer than usual, glance at the house to see if any of the extended family is watching, and when I deem it safe, I kiss her goodbye. After she pulls out of the driveway, it strikes me that this is the last time my girlfriend will see my mom, and I wonder if she has the same realization. I don’t ask. I go back inside.
Aunt Cathy stops me before I go back upstairs. She grabs ahold of my arm. “That girl is such a good friend,” she says, tears in her eyes and a waver in her voice.
I force a smile and nod. “Uh-huh, yup.”
My Catholic and politically conservative mom is in charge of telling similarly Catholic and politically conservative Aunt Cathy about my sexuality. It has not happened yet.
There is a balcony attached to my parents’ room, the windows directly next to my mom’s hospice bed looking out to it. Beyond the balcony, we can see the creek. We live in a waterfront house, deep in the woods with no neighbors. Normally it’s lonely, but right now it’s peaceful. The creek is glass, only disturbed by squabbling waterfowl. There’s an antique flowerpot sitting on the balcony, and we prop yellow mums, still in their nursery pots, on top of the flowerpot, so my mom can see a splash of yellow in the window and not just the still creek. We sit on plastic outdoor chairs that my dad carries upstairs and onto the balcony to accommodate the extra bodies. The chairs are bright teal, having been spray painted by my dad on a whim one day, against the wishes of my mother. The paint is peeling away from the chair, not reacting very well with the elements over the years, and I pick at it and watch it flake off onto the wooden planks at my feet. We watch my mom soundlessly through the dusty window as she answers some questions the other nurse must be asking.
The other hospice nurse, outside with us, is called Tamara, I think. She asks the basic questions:
What kind of cancer is it?
This one is easy; I say it to everyone who inevitably asks. She has Stage IV Metastatic Breast Cancer. At this point, I know more about it than the average person and the science behind it all. I keep a list in the notes app on my phone of all her medications, all of the treatments she’s taken, and all of the possible trials she could sign up for. It doesn’t serve us much use now, but I like to think it’s useful information. It makes me feel like we have all our options out in front of us.
Lynparza
Gem-carbo + Trilaciclib
Keytruda
Piqray
Doxil + Adriamycin
Xeloda + Ixempra
Xeloda + Docetaxel
Eribulin + Pembro
Cisplatin
OPDIVO
Ibrance + Arimidex
Fenbenzole
Kadcyla
Enhertu
Xtandi
Niraparib
Ixempra
With each appointment, the list of doable treatments and trials grows smaller and smaller, and the prognosis grows worse. We don’t delete the treatments from the list though. Just in case.
How long has she had it?
The short answer that we tell Tamara is she’s had diagnosed breast cancer for the last eight years. The long answer is she has a lump on her breast in 2010, but every doctor she goes to says, “It’s just a cyst, no need to worry!” But she worries, and the doctors brush her off until she demands a biopsy in 2012, and she is diagnosed with breast cancer over the phone while we’re eating salmon at the dinner table, and by then it is Stage III-C because the cancer has spread to her lymph nodes.
She has a double mastectomy in early 2013 while I am thirteen years old and in the eighth grade. I am in school on this day, at my private Catholic school, carrying around a figure of St. Peregrine encased in a resin stone in my pocket, turning it over and over with my hand. St. Peregrine is the patron saint of cancer patients, so I am told. I glance at the clock frequently, wondering what the surgeons are doing to her at every moment.
As I do a lot during this year, I fake being sick to my literature teacher. Mrs. Gallagher is old and mean and wears a Baltimore Ravens windbreaker every day. She drinks an extra-large Diet Coke from McDonald’s every morning, and she has only one arm—she lost the other in a motorcycle crash according to the rumor mill—that she uses to throw sticks of chalk at the boys who misbehave. She calls my friends Jack and Ben Stupid 1 and Stupid 2, and they fight over who gets to be number one. She loves me. She knows I already know all of the material, so I’m free to walk the halls of the school.
St. Peregrine comes with me, and we walk together. My feet tap against the linoleum, as I have stolen Mrs. Gallagher’s thumbtacks from her desk (along with a fistful of candy), pressed them into the soles and toes of my uniform shoes, and turned them into makeshift tap-dancing shoes. This cheers me up a bit, and I jump from blue tile to blue tile, avoiding the white ones. I sneak down into the hidden room in the elementary school cafeteria that the staff tries to pretend doesn’t exist. Next to the Got Milk? poster that teaches us there are 144 items in a gross, there is a door blended into the wall, no knob, and the only way in is to push very hard. Immediately behind this secret door is a small hallway leading to another door, this one with a knob. This door is marked clearly with signs that say do not enter, asbestos! but I am thirteen and do not know what that is.
I open the asbestos door, and the hidden room is just a small square. It’s probably fifteen by fifteen, but it felt larger when I was smaller. There’s nothing in it. I lean against the wall and sink to the floor, getting white powder on my green tartan skirt and my navy knee-high socks. I stay down there for a while, reading Wattpad stories on my iPod Touch. The lower school doesn’t have Wi-Fi, but the high school does, and the signal just barely reaches across the parking lot, and the password is just cougars123 which is my third guess. My teacher thinks I’m at the nurse’s office, and the nurse thinks I’m in class. It’s a good system. No one comes looking for me.
My mom’s surgery goes well. I watch my dad flush her drains every night, measuring the liquid each time, keeping track of the healing in a way I don’t understand. We look up a local tattoo artist named Vinny whose specialty is tattooing nipples on women who have mastectomies. Her internal battle between getting new nipples versus not having tattoos goes on for a while. She doesn’t go.
She is prescribed injections that cost more money than I’ll ever see in my lifetime, and I am told that we are lucky we have insurance. While my dad is away, playing golf on Wednesday evenings, my mom and I have a routine established. We go to our local Don Pablo’s restaurant, and she orders a large margarita on the rocks with salt, her signature drink. We split chips and salsa and the chicken fajitas. We go home, and I learn to give her injections in the fat of her belly.
“You’re way better at this than your father,” she says to me. “He sticks it in too slowly, like he’s afraid to hurt me, but it just hurts more when it lasts longer.” I, apparently, stab her at her preferred speed.
In 2014, she is cancer-free. They assure us. There is normally a bell in oncology that a patient in remission gets to ring, but my mom opts not to. “Superstition,” she claims, but I see the look on her face while she receives chemo in the infusion center and the sound of the bell fills the room. The rest of the cancer patients clap and lightly cheer, but I notice the strain on their faces too. Many of them know they will never get a chance to ring the bell. Superstition, perhaps, but I know she’s just being polite.
In 2019, I am at the dermatologist’s office. I have just come home from my sophomore year of college, and summer is starting. I am catching up on all of my doctor’s appointments that I have missed while being away. My mom has her own appointment on the floor above the oncology center, where she has been going every three months for the last five years to get an infusion to keep the cancer away. My mom is supposed to meet me at the dermatologist’s. I hate having doctor’s appointments alone; I’m nineteen, but I feel sixteen at most. I waive all of my medical privacy rights so my parents can call any of my doctors at any time to check my medical records. I text my mom, but she does not show up in time for the appointment. I’m sorry baby, she texts. I’ll see you at home. Alone, I am diagnosed with polycystic ovarian syndrome (by my dermatologist, the only doctor I have who listens to me), and I am told I may not be able to carry my own children. I only go to this appointment because I am having an issue with acne. The intake form asks when my last menstrual cycle is, and I write LOL, as I have no idea, but it’s been months. Maybe eight. My dermatologist does not like this answer. I leave his office with a prescription for antibiotics for the acne and a referral to get an ultrasound to inspect my ovaries and uterus. I don’t even know if I want kids; I’ve sworn for the last several years that I don’t, but that was mostly for show, trying to convince myself I don’t want kids to make it easier on myself when I inevitably end up with a woman and don’t have a ton of money to spend on fertility, but the idea of being pregnant has always intrigued me. I’d offered to be a surrogate for my gay male friends. I cry the entire forty-minute drive home.
My mom arrives home shortly after me.
“I need to tell you something,” she starts.
She gathers my dad and me onto the living room sofa. She cries.
“The cancer—it’s back. It’s worse. I’m sorry, I’m sorry, I’m sorry,” she apologizes to us. My dad is crying. I am numb.
“It’s not your fault.” It’s the only thing I can think to say to her, and then, “how worse?”
We all are standing now, and hold each other close, a triangle of a hug, limbs and breath shaking.
“It’s Stage IV, it’s in my bones. Oncology called while I was upstairs about to get the infusion. I had to go down there to make an appointment. Obviously, I skipped the infusion, since it didn’t prevent shit. I get a full scan tomorrow.”
We stand there. I try to make eye contact with my father, and he closes his eyes. My own eyes burn, and my chest is tight. I’ve already cried myself out today, but I feel like my tears have been wasted. I don’t tell them about what the dermatologist said. Not yet. One crisis at a time, I guess, though mine feels worlds away and so much smaller in comparison. I think about my mom, learning she has terminal cancer and texting me her genuine apologies for not making it to my doctor’s appointment. I think about the both of us driving home at the same time, driving the same roads, both of us crying, one of us with death in her bones.
“It’s going to kill me,” she finally says. “I’m so sorry, guys.”
Why did you decide on hospice now?
In the two years since her terminal diagnosis, we have exhausted all available treatment options. We have gotten second and third opinions, and I have a Google search history and a yellow legal pad full of questions like: does drinking lots of water actually decrease bilirubin levels? and what does renal failure look like? She tries to get me to smell her urine at some point, but I politely decline, and she says it looks like tea. I buy a (very overpriced) large glass container full of beetroot juice, and she drinks maybe a third of it. She says it’s gross, and buys powdered beetroot juice to mix into other, better-tasting drinks. This, apparently, is even more gross.
A month earlier, the evening of August 8th, I wait until my dad is outside, covering up our boat in preparation for rain, and I sit in front of her on their bed. I have gotten many crystals recently, giving into my inner crow who loves shiny things, and I am giving my mom a tour of them.
“This one’s carnelian, and this one’s ocean jasper, and this one’s just clear quartz,” I say, “but clear quartz when charged properly apparently sucks bad energy out and promotes healing.”
I have a large chunk of clear quartz a little larger than the size of my fist. His name is Large Thomas.
“I’m gonna put Large Thomas outside tonight, and the moon will charge him, and then you can take him to your next doctor’s appointment and maybe he’ll help a little.” She picks up Large Thomas.
“God, he’s heavy,” she says, and pets him like he’s a cat. I take him back from her.
“He’s not ready yet,” I say. I pause. “Do you believe in angel numbers and all that?” I ask.
She shrugs. “I mean, I don’t think I personally do, but I won’t discount it.”
I contemplate. “Can I show you a TikTok?” I ask, already pulling my phone out of my pocket.
She rolls her eyes. “Fiiiine,” she says, unimpressed.
The TikTok is about manifestations, and how they are most potent tonight, on 08/08 at 8:08pm. To manifest, according to this TikTok, we need bay leaves, a red writing tool, and a way to burn them. She lets me gather the things. We write in red China marker on the bay leaves what we want.
“Is there a limit to how many we can do?” I wonder aloud.
“I hope not,” she says, “I have a lot to manifest.”
I write on mine: peace and happiness, no pain, and I write NED on my last one. NED is a cancer miracle—No Evidence of Disease. I don’t show her that one. She writes on hers: good mental health, happiness for family, and acceptance. The next step is to burn them at 8:08pm, so we wait about five minutes for the time to be right, and I use the grill lighter to light a large Wood Wick candle (the Fireside scent) that until now has been just for display and never lit
(which I’ve always thought has been a waste), and we step onto the balcony of their bedroom. It works better if it’s outside, apparently. I light the bay leaves from the flame of the candle, and we watch in silence as they burn away, my dad tinkering with the boat in the background, not noticing us on the balcony.
“Should we be humming? I feel like we should be humming,” she says, and we giggle. I think at the same time we realize how weird it is to be staring at a decorative candle eating some leaves, and the giggles get louder. The melted candle wax catches the flakes of bay leaves that fall from the flame, and we click the lighter at them to see if they’ll burn any more while floating in the pool of gray. I leave Large Thomas out there on the balcony so he can soak up some moonlight. We leave the candle out there too to harden.
The next day, August 9th, I slip Large Thomas into her purse, and he follows her to all of her appointments. On August 11th, her second opinion oncologist at Johns Hopkins tells her of one final treatment option he’s discovered. A few days ago, there were none left. Her primary oncologist advises against it, but we decide we will exhaust all treatments, that way we can say we actually do try everything. We praise Large Thomas, and she starts sleeping with him on her bedside table.
The treatment does not make much of a difference, it turns out. It makes her feel sick, but she already felt sick, and we are no strangers to adverse side effects, so it’s worth the attempt. Her second opinion doctor thinks more rounds of treatment will kill her faster. She stops after a few rounds, and I throw Large Thomas out into the backyard for a few days to recharge. In the meantime, every at-home remedy for liver and kidney failure is attempted. Her bilirubin levels change a little, but her white blood cell count worsens. We call hospice.
—
I don’t know how or when she does it, but my mom easily surpasses me in Pokémon Go. I am a casual player. I open the app while we’re at the mall and spin a PokéStop at the Sprint store for some more Poké Balls. I begrudgingly catch the rats and pigeons and then trade them away, so they don’t take up my allotted amount of Pokémon. But my mom comes home from work with Pokémon I’ve never seen.
“What on earth is that?” I ask, looking at the pink monstrosity on her screen.
“A Lickitung,” she says proudly. It looks like if a light pink frog were standing on its hind legs. And if the frog had a skunk tail. And if the frog had a large tongue that had an accompanying animation that licked the screen up and down up and down up and down.
“He’s licking us!” I am outraged. I want one.
At the beginning of the app, the highest level was twenty, and she hit level twenty before anyone I know.
“How are you doing this?” I demand to know. I am a measly level sixteen. Even the Pokémon Go YouTubers my mom has taken to watching before bed are still level nineteen, almost twenty.
She shrugs. “I have it open on my desk at work. There are three PokéStops I can reach from my desk. You can spin them every four minutes. I go on walks at lunch to hit the Gyms [the Pokémon Gyms—for battling] at the end of the block, and Pokémon just spawn at my desk all day. I just catch them when they appear. And I don’t run out of Poké Balls because of all the items I can get from spinning the PokéStops every four minutes. It’s a great system.”
We start leaving for school earlier.
“You know, Mr. Wallace doesn’t even unlock the doors until seven,” I say at six when we slide into the car. Our projected ETA is six-forty.
“Perfect, we can hit some PokéStops,” she says, and I internally groan. She passes me her phone, already open to the app, and I sit in the front seat spinning PokéStops with both thumbs. She can’t see her phone from where she sits in the driver’s seat, but she dictates to me which Stops are worth spinning anyway. She recites to me which Stops are now Gyms. She tells me about her Pokémon Youtubers theorizing that more levels will be coming soon. She tells me that soon we’ll be able to request where PokéStops can go, and maybe we’ll be able to get one closer to our house.
—
That Sunday, September 12 is my mom’s last speaking day. As the day goes on, she opens her mouth less and less. I think the last real thing she eats is the bread pudding from the night before. I bring her bowls of ice chips, and she sucks on them. I bring her pickles and cheese, and she has half a bite of each, but stops. She wants more ice chips. I oblige.
Aunt Cathy is downstairs washing new sheets my dad’s mom brought over. The hospice bed is twin-sized, and we do not own any twin sheets. My dad and I are alone with my mom speaking softly to her. My dad is on their bed, holding her hand across the gap between the beds.
“Hey, did you ever tell Aunt Cathy about…me?” I ask. Her eyes widen, and before she can apologize, I say, “It’s okay, we’ll take care of it. It’s not important right now, I just wanted to know.” I stroke the small amount of gray hair she’s managed to grow back on her head.
“I’m sorry,” she says anyway, and I shake my head.
“Don’t, it’s not your fault.”
I think about anything else that we might need to say to each other. I think about a fight we have a year before, where she asks, “Why don’t you like me? I don’t even think you love me sometimes. I think you don’t like anybody. Aside from Whitney, I have no proof that you care about anyone at all.”
She says all of this viciously and unprompted. Whitney is my roommate and one of my best friends. Whitney stands up for me when I don’t stand up for myself, including against my mother. My mom does not like this. My mom does not like Whitney.
This fight happens because while we are baking pretzels in the oven, my mom says something cruel that I don’t remember anymore. I tell her she sounds like her father. She laughs and thanks me. I say that she misunderstands, and I don’t mean it as a compliment, that she sounds mean. She is quiet. When I take the pretzels out of the oven, she does not reach for hers, and instead makes a scene and storms upstairs. My father is distraught.
“What did I do?” he asks me.
“It’s not you, it’s me. I’ll fix it.”
I bring her pretzel upstairs with me. She is in bed. She stares at me and does not speak.
“You should eat this, it’s pretty good,” I say to her, holding out the pretzel and trying to break the ice. The “why don’t you like me” bit comes next. I think of this fight often, as I don’t know what to say in response to it. On this night, I put the pretzel on her bedside table and say something like “That’s unfair of you to say, and I’m sorry you feel that way, but I just meant to tell you that I didn’t like how you were treating me, not that I don’t like or love you. It’s fucked up of you to say that, actually, and you know it’s not true.”
I go back downstairs, and she does not follow. She pretends it does not happen the next day and all the days after.
Now, though, in the hospice bed, I know if I don’t say something, I’ll regret it.
“I just want you to know,” I start, searching her yellowed eyes, “that I love you so much.”
She smiles. “I love you too, baby.”
The next bit feels weird to say, but I manage it. “I don’t just love you though, I do like you too. I just really need you to know that.”
Her eyes well up with fluids she cannot afford to spare. “That’s so nice.”
—
Over the years, my dad’s Wednesday evening golf ritual turns into Wednesday and Saturday and Sunday, and when our local Don Pablo’s closes down (rest in peace), my mom and my tradition turns into getting Dunkin’ frozen coffees and playing Pokémon Go undisturbed for hours. During our hundreds of hours in the car traveling from the mall to the local community college and inevitably back to the mall hunting for Pokémon, we cultivate a playlist together.
The radio has lost its appeal. She normally keeps it on conservative talk radio at a grating volume, and when it’s not, the influx of commercials makes me stir crazy and itchy. When we get a new car in 2019 (an impulsive I’m-dying-and-I-need-to-ensure-my-family-has-nice-things-before-I’m-gone purchase, no doubt) I convince her to allow me to play Spotify instead of the radio. This is a tremendous accomplishment for my propaganda-tired ears. I try to queue songs that I think she’ll like, but aside from the songs I know she doesn’t outright hate from our radio music days, I don’t know what she likes. I don’t ask what she likes. I play my own music instead and experiment with how much I can get away with before she complains.
She tires of my boyband music quickly. I flip over to Broadway show tunes. This lasts us for a while, but we don’t have similar taste, it turns out. She prefers the classics, like Pippin and A Chorus Line, and I’m partial to Heathers and Dear Evan Hansen, both featuring the death of children, and both therefore banned from the car. They’re too sad, she says. We listen to Hadestown which depresses her (and is banned), and we listen to Hamilton so much that we memorize every lyric and cannot stand listening to it anymore. We listen to everything we can stomach, and finally we have to move onto something else.
“So, I’ve had a thought,” I say after she rejects my Wicked suggestion.
“God knows where those come from,” she says, a phone in each hand, spinning a PokéStop expertly with both of her thumbs. We’re parked at the local community college and there is an abundance of Stops and Pokémon spawns. My mom has her own account open on her phone and a backup account on a spare phone she bought from her boss. There are four phones between the two of us. All for Pokémon.
“What if we make a playlist of songs we both like from any genre and time period that we can just put on while we’re in the car,” I suggest. She blinks at me.
“What have we been doing this whole time?” she muses.
“Beats me,” I say.
“Get on it!” she says, and I close Pokémon to open Spotify. I create a new playlist and entitle it songs that make me indescribably happy to set the necessary vibe.
“I’m gonna put some stuff from Mamma Mia! on here,” I warn, and she sighs.
“Not too much, please,” she says, using both thumbs to throw Pokéballs in opposite directions to attempt to catch a Pidgey. They both land. Both phones throw animations in sync that say Nice!
“You’re wasting Poké Balls on Pidgeys,” I say. “They suck.”
“They do,” she agrees. “But they’re still worth points, and that’s why you’re so far behind. Gotta catch ’em all, baby.”
My mouth falls open. “How do you even know that catch phrase? I never watched Pokémon! You never watched Pokémon!”
She winks.
—
On Monday, September 13, she sleeps. My dad informs me that the hospice pamphlet says that when patients start to sleep, they’re close to dying, but they can still hear, they think. The hospice nurses ask if we want music therapy, and my dad asks what that entails, and they tell us that a man with a guitar will show up to our home and play live music. We politely decline.
I put my Spotify on my dad’s JBL speaker instead. I pull up the songs that make me indescribably happy playlist, now over 6 hours long. I play it now while she sleeps. I put the speaker on the windowsill next to Large Thomas, and I think I see movement in her face when one of her chosen songs comes on, and that’s good enough for me.
My dad says she opens her eyes whenever he tells her he loves her, and he doesn’t leave her side. I open her phone and catch a Pokémon for her to continue her daily streak. It would feel wrong for it to end. While I’m there, I text her friends and coworkers that if they want to come by the house and see her, they probably should soon. All of them do.
The hospice nurse comes by to check on her and presses on her stomach. It is very hard. She inserts a catheter, and immediately the pressure is released, the attached bag filling with tea-colored fluid. I don’t think she’s been to the bathroom since Saturday, and I feel bad about the pain this inevitably causes that she couldn’t voice. I don’t know which is the last time she opens her eyes.
The rest of the day is slow, just sitting by her bedside, watching people come visit and speak to her. My dad and I go through the dresses in her closet and pick out a blue maxi dress for her to be buried in. It feels wrong to do so while she’s still alive, but it’s something to do. We go through her jewelry and pick out a rosary that matches the blue in her dress. I grab the prayer blanket that oncology gives her. A bunch of ladies in a sewing circle sit around praying while they make them. The prayer blanket is also blue. I crochet a blue scarf to add to the mix. She gets cold easily, and I imagine six feet below the surface must be cold. We worry she’ll pass away overnight while we’re sleeping. We don’t sleep.
—
My mom’s Pokémon YouTubers are correct most of the time. The Pokémon levels do increase—this time to level forty. My mom is the first person I know to reach level forty. I’m stuck on level thirty-two when she does. She’s millions of XP ahead of me. She starts buying Google Play Store gift cards so she can spend real money in the game. She buys Pokémon accessories, like the Pokémon Go Plus which is a small wristwatch that vibrates and changes colors to tell the user there are Pokémon nearby, and if the user presses the button on the watch, it can catch Pokémon for them and spin PokéStops all without the user having to be on their phone. She clips it onto her purse.
We take a trip to Longwood Gardens in Pennsylvania to look at the flowers during the summer. This is around the time we learn about nests in Pokémon. Nests are when a specific Pokémon will spawn in large quantities in an area for about two weeks. The Pokémon spawning in Longwood Gardens was a Wobbuffet. We spend more time crying at the sheer amount of Wobbuffets around than looking at the in-bloom flowers.
Wobbuffets are like if you tried to imagine a bright blue octopus with only four stubby legs, standing at attention in the military. They look completely ridiculous, and they are also one of the Pokémon that have a visible difference between the male and female versions.
“What is that?” I screech, pointing my finger at the Wobbuffet dancing in the tulips on my phone screen. My mom whips her head around.
“Oh my God,” she says, “which one was it?” I tap the same Wobbuffet on her phone I’ve just touched. The Wobbuffet materializes on her phone, the same bright blue we’ve grown accustomed to in the last twenty minutes we’ve been at the garden, but over the zigzag mouth on this one is a pair of bright pink lips.
“She’s beautiful,” my mom declares, and we both stick out our lips as much as we can to imitate her.
“It’s going to be such a bitch checking all of their stats later,” I say after we catch the fiftieth.
“Oh, I almost forgot to tell you!” my mom says. “I found a third-party app that checks their IVs, and it’s accurate, like, to the number. It’s just a widget for me.”
“Oh my God, that’s crazy,” I say, but I’m also impressed. I don’t know what IVs are, but I’m assuming it’s another word for statistics.
“I’m not sure if it’ll work on your phone the same way it’ll work on mine with the whole Apple/Android thing, but I can always just check your IVs for you,” she says.
“Oh my God, please do it for me,” I say.
She rolls her eyes. “I don’t want to do it all for you. That’s no fun.”
“The clean-up afterward is no fun,” I say, wrinkling my nose. “This is what’s fun. The Wobbuffet of it all.”
She laughs. “I kind of like the clean-up,” she admits. “It’s a level of organization and statistics and only keeping what’s best that really speaks to me.”
“Mmm see, that’s where we differ,” I say. “I forget any of this exists the moment the app is closed.”
Her face falls. “Oh.”
“Not in, like, a bad way,” I hurry to explain. “Just that when I’m on my phone, my brain wants to read or text someone. If there aren’t Pokémon nearby, I don’t think about opening the app.”
She nods, but she’s not as enthusiastic as she was before. I don’t know how I manage to ruin every interaction we have, but somehow, I always do. It’s like she has a version of me that exists in her head, and every time I speak, I remind her that that Holly doesn’t exist.
To be fair to her, I suppose I do a bit of the same. I spend a lot of time assuming the things I say won’t get taken the wrong way, and then I spend even more time trying to make up for it when they do.
According to my Pokédex, we catch over one hundred Wobbuffet.
—
She dies Tuesday afternoon, September 14.
In the morning, we request Anointing of the Sick to appease the Catholicism, but our go-to priest doesn’t get the message until the following day and apologizes profusely when he does. Her Baptist friend and ex-coworker prays over her instead when he visits, saying a few words. I can’t pay attention to it, but the cadence of his voice sounds soothing and lovely, and I tell him as much. I put the happy playlist back on, and we sit with her.
The hospice nurse comes over. She isn’t scheduled to, but she does. She helps my aunt change the sheets on the bed by rolling my mom from one side to the other, and it would be comical if she didn’t groan in pain as it happened. This is the first sound she’s made since Sunday. It is also the last sound she makes. A few minutes later, we are standing around the foot of my parents’ bed, away from my mom. I am the only one with eyes still on her. The hospice nurse is saying something I’m not listening to. I am watching the rise and fall of her chest. It’s slow. It stops. I wait a moment, expecting it to rise again. It doesn’t.
“I think…I think she stopped breathing,” I say. The hospice nurse looks at her.
“It’s time,” she says.
I glance at the clock, and it’s 3:35pm. Time of death, I think to myself.
The song playing softly from the speaker is Elton John’s “I’m Still Standing,” and I hope to God no one notices. We gather around her bed. The hospice nurse says she is actively dying, that she’s not fully gone yet, but I don’t know how she knows that for sure. I stroke her head and her left arm. My dad has her other arm and her face in his hands. Our other family members are just, around, I suppose. I’m not looking at them. I’m looking at her chest. It looks wrong to see no movement, and yet still feel the warmth in her skin. The hospice nurse lets us stay there for a while, but she steps into the hall to call the funeral home. They’re sending someone to come collect her body. She’s a body now. The hospice nurse removes the catheter.
“She doesn’t need this anymore,” she says sort of fondly and I’m equally impressed with her ability to keep cool during devastating situations but also creeped out.
I leave the room to start making phone calls. I call Mommom first, my dad’s mom. It’s a bit of a blur. I call Kylee’s mom; she’s at volleyball. I think I call my brother. I can’t remember. I stop calling after that. I leave my aunt to call her and my mom’s father and their brother. Mommom arrives quickly, grasping my mom’s hand. My dad is still at her side. I don’t want to touch her again. I don’t want to know how she feels as the life leaves. I email my professors. I won’t be in class this week. Or next.
The funeral home representatives arrive alongside my brother. He comes upstairs to see her and make sure our dad is okay. He is not. I don’t watch the next part; I am advised against it. I am downstairs with my aunt when they bring the now-full body bag downstairs. My brother is helping them carry it. I watch them load it into the car (hearse? I cannot tell).
When my mom’s mom dies the year before, I am sitting in the hospital room with my mother, my mother’s brother, and my grandmother’s body. There is a DNR on file, but the EMTs try to revive her anyway, leaving her with purple, bloody lips. She is 90 years old. We sit there in silence for a while, and my mom cleans her face with a small pack of baby wipes she keeps in her purse.
“We now live in a world where we don’t have a mom,” my uncle says. We do not respond.
I think of this now, as the hearse pulls away. I now live in a world where I don’t have a mom. I go back upstairs axnd hug my father. It’s sort of like the family hug from back when she’s re-diagnosed, but there’s a third of it missing.
“We’ll get through it,” I tell him because what else can I say? He nods against my shoulder.
“We will.”
My eyes land on the Wood Wick candle on her vanity, and I focus on the bits of bay leaf still left behind. Peace, I remember. Acceptance. I take a deep breath, and I feel my dad follow suit. The speaker is still playing. Meat Loaf fades out, and Gloria Gaynor fades in with “I Will Survive,” and I smile a bit. Yeah, I suppose we will. I pull back from the hug with my dad, and I reach for my mom’s phone. I unplug it from where it’s charging, and I pocket it. I’ll catch more Pokémon later.