living underground in the real world

in which i remove needles from my mother’s body and don’t even throw up once

The Cancer Journals, Part Three.

Part One is here. 

Part Two is here.

In Part Three I become yet more of a whiny self-pitying exhausted wraith.

Let us begin.

December 16th, 2014

Adrienne’s making Croissant Caramels Dani’s on Turtle Bars Shana’s Customers Jenna’s dishes Liz packaging Jacob paperwork Brenna’s shipping Lucy’s feeding Henry in between foiling bars, Than is at the Shop-Up, Alexis is enrobing, Alexandra is fixing Orange Bonbons, Kate’s expediting // what am I working on. Being Available. Crisis Management. Making my mom latkes, the only food she eats lately. The phone. I’m the swing shift, I’m water, I flow downhill, I smooth it over. A lot of everything / a lot of nothing.

My gynecologist comes in, remember her from Part One? The one whose face falls when I tell her there’s a chance my mom has pancreatic cancer? She bounds in, seven months pregnant, full of the matter-of-factness that good doctors have, to buy more boxes of the Vulvas chocolates that I’d given her before my surgery and to see how things went with my mom. My mom is, of course, hanging out on the couch at the shop, and she gives her tips—always ask questions, always get second opinions, be your own advocate. I ask her opinion on the hereditary thing, and she says don’t take no for an answer when it comes to tests, make them do tests, why not. Don’t mess around. Then she buys a ton of gelt, dreidels, vulva chocolates and I

I package 10 more Vulva boxes on the fly for her, my hands do it without thinking. You go where you’re needed.

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Later I’m having one of my begging conversations with my mom where I try to get her to eat, drink, take a walk, do anything but do work on her computer and read books on the couch. In desperation I tell her I don’t know what else to do if she won’t help herself. She stares at me incredulously.

“Do you think I could be doing more to help myself?”

I stare back at her just as incredulously.

“Mom…you’re not doing anything to help yourself.”

We look at each other. I tell her as kindly as I can that I know that it’s a lot to face but that she has to start facing it. “It’s easier not to face it,” she tells me. She goes back to reading. She’s eating so little she gets dizzy every time she wakes up, a lifetime of low blood sugar her excuse. The doctors tell her she has to force herself to eat, just two bites at a time, throughout the day.

December 17th. 

We’re talking about her new apartment, how she’s never lived in the country, how she’ll like it.

“The truth is,” she tells me, “I live completely in my head. It doesn’t matter, really, where I live.” I’m stunned at such an honest assessment of the problem I’ve been struggling with for weeks until I realize she thinks it’s a badge of honor. Maybe it is. My mother the intellectual. During the only fight I can ever remember us having I was about 16 and she spluttered to me that when she was my age she was reading better books than I did.

Having her at the shop is really funny. Everyone is so kind about her taking up their comfy break couch and having to either squish in next to her million tissues, uneaten snacks and drinks, computer, and books, or having to cram themselves into the little back room break table next to the clacking enrober. Everyone gets a kick out of her eccentricities, we all become attuned to the cycle of her talking to Harriet and Judy, make private jokes out of their ludicrous conversations, how she yells at them to stop calling her and they never do. I am on a constant campaign to ask her to take phone calls in the back room, but she never does. Customers can hear everything you’re saying from that couch, and we all wince when she is yelling at Judy things like “What? I can’t hear you! I said I had MILD CONSTIPATION BUT NOW IT’S OK! What’s wrong with you, you can’t hear me, now? Are your ears broken?”

It’s soothing to have her be a shared property in my workplace, for all of us to notice her insanities. To bear the burden together, a little bit.

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December 18th.

We go for the post-chemo checkup. She is dizzy, light-headed, nauseous, has Reynold’s Syndrome so bad all the time that her fingers are always white. She says it doesn’t hurt. Everything feels like it’s falling apart. Other people in the waiting room are joking about their white blood counts, talking to other patients about Christmas, magazine articles.

The doctor tells her literally, almost word for word what I’ve been saying nonstop. She has to eat she has to drink keep up her strength walk a little each day keep up her yoga practice don’t start to slide downhill. Her blood pressure is low. She’s dehydrated. They decide to give her fluids. They say it will take at least two hours and she says “my daughter can’t stay that long, she owns a chocolate shop and it’s December! I tell her I can and I will and I call the shop and I’m barely missed anyway because everyone’s so damn competent and I go into town to get us lunch.

Tarrytown is one of those great small Hudson Valley towns with good planning guidelines (wooden signage, excellent sidewalks) and small shops. An uppity town for richies. Nice to browse in, wouldn’t want to live here. I realize it’s the first time I’ve had to myself in weeks. In the car I indulge in yelling to my absent mother. I hate nagging you, see what happens when you don’t drink, how can you be taking care of yourself this badly, I CAN’T DO EVERYTHING FOR YOU

“Not everything that is faced can be changed, but nothing can be changed until it is faced.” James Baldwin

I miss myself with a sharpness that pulls me downward all day.

I miss sex, summertime, feeling good, my body. Work and doctors work and doctors, three weeks of nothing else.

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One more week until she moves into her apartment. I’m exhausted with it, I want my life back. Such privilege, to say such things. When will she get her life back.

Back to work by late afternoon.

Kate hates the chocolate calisthenics photos because she thinks we do them just so I can take the photos and she’s partly right of course but also stretching is just so good.

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My mom has a dream that I’m making a chocolate bar called Dark Night of the Soul, and I yell out to Jacob across the shop, “Jacob! We need more Dark Nights of the Soul!” Even in her dreams I am a nag.

Adrienne tells us about a Facebook fight she prevented herself from indulging in, with someone so mainstream “they believe in gender binaries and stuff, even.” I love her bubble so much. I want her never to have to leave it. Nothing punctures your bubble quicker than a hospital, I’m learning.

Everyone comes in early to work and stays late, I don’t even have to ask them.

Jacob and Brenna and Kate are running the whole show and I’m just floating around, occasionally asking them what I should do to help them.

 December 19th. 

Maresa didn’t hire anyone to help her this holiday season so we have two businesses running out of one space, one with eleven employees, one with one employee. She’s working 16 hour days every day, has been all of December and most of November, and she’s beginning to crack. She works like I used to work. Even before the cancer stuff I’d been taking it easier at work, because I could. I’m jealous of her. I’m jealous of anyone who works harder than me.

Her mother comes in to help her box up macarons and the two of them, goddamn Sophia Lorens in their vintage aprons and stylish handkerchiefs, are too much. Maresa has one of those Staten Island Italian families who all fucking love each other. Spend every holiday together. Play games. The cousins are like sisters and brothers and the sisters and brothers are like twins. The sight of Maresa and her mom working together depresses the shit out of me. Maresa’s mom with her boyfriends, her dates, her greenhouse full of perfect citrus fruits where she paints in the mornings, an easel nestled among the miraculous blooming Meyer lemon trees. She goes out to run errands for Maresa and I’m so jealous I can barely speak. My mom reads on the couch, reads on the couch, reads on the couch. Sometimes she’ll put chocolates in cups, it’s true. But real-world things aren’t her thing. She is not a maker. She’s a writer.

Have I mentioned the banner drama? I know I’m obsessing over the banner thing. I am really fucking losing it, OK? I’m not working a lot but not a lot is still more than most people work and I’m really fucking losing it. The banner drama is that Kate and I made her a banner and she still hasn’t noticed it. You literally can’t miss this banner. You open the front door and there it is. Our neighbor popped his head in and said “Oh my god! What a beautiful banner! Oh Pauline, how adorable!” but she was reading upstairs next to her space heater and didn’t hear.

Every day I do something to see if she will notice the banner. I tell her the tree outside, just behind the banner, is my favorite tree. I ask her if she can tell if that’s a bug on the ceiling, directly above the banner. She never looks directly at the banner, never acknowledges it. I’m past caring or tell myself I am, I’m just astounded.

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The latest saga in the banner drama, which isn’t a drama for itself but a sickeningly fascinating metaphor for her complete inability to see the world outside of herself in any way, is that this morning I ask her point bank if she likes the banner while pointing at it. She says she does in a vague way while not looking at it. I tell this to Maresa later at work and she says she did her own reconnaissance banner-mission yesterday—she said it was such a nice banner Kate and I made, and didn’t she think so? At first she said, “what banner?” then when Maresa described it she said “oh, that was a while ago.” I know she was covering up for not having seen it.

Does a part of her brain wonder what this banner is that everyone is referring to? Would that part connect to a part that would think to look around the living room? Have I ever mentioned the time she broke her leg because she didn’t realize the sidewalk had ended? When she got a concussion because she “bumped my head into the car door knob”? Your guess is as good as mine with that one. It’s not that I’m hurt about the banner, I want to say again. I mean, of course I am hurt about the banner. I thrive on praise, can’t live without it. But a huge part of me is just so filled with horror and sorrow when I think about her mind.

I’m consistently astonished at how willfully helpless she is. How she has no idea how to listen to her body. When she has a caretaker she leans hard into them, will not put food away or even close the refrigerator door, took me days to teach her to get water for herself. She doesn’t mean to do it, but she is not adaptable to new situations unless absolutely alone. I’m sorrowful that her living in my house hasn’t been a success, but how could it be? I’m disappointed. I’ve been disappointed in her my entire life, I always knew these things about her, why it hurts me now is puzzling to me. I guess I just see it more. How quickly she’s let herself slide. Her longing only for comfort. I’m constantly confused at why she seems to have no tools with which to take care of herself. It’s getting old. I have to stop being confused about it.

When I’m being mean like this, I try to catch myself. Wouldn’t you long for comfort? Wouldn’t you be weak? Halfway across the country, sick and physically weak and cold and scared and not in control. How can I blame her. How can I be this judgmental. I’m still kind to her, always, and that saves me from too much anger for letting myself be so brokenhearted at her essential weakness.

I have to keep reminding myself of her intellectual prowess, her appetite for words and the worlds made of them. There are things she is great at, I need to take comfort in them. She could help me rearrange that sentence to not have that weird preposition, that’s a thing she is great at.

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My friends continue to be shockingly wonderful. Except like three of them, whose lack of contact has been saddening. I’m trying not to take it to heart. Maybe they don’t know how hard things are for me right now, maybe they don’t know how much a friend reaching out means. Hey, people: if your friend is going through something rough, contact them. Even just a quick text. Even better is a great YouTube. If they forget to say thank you, don’t hold it against them. The Sponge Lady, or the Dancing Dog, text them those. Pohanna, Jacob’s sister, sent these to me. I watched both at moments when I thought I was going to burst into tears the millionth time in a day and they pulled me out of it long enough to keep the day on track. I need to remember this, too, the simple ways of being a better friend.

When I think about the three friends, I realize they are somewhat selfish, self-absorbed people. The things a crisis puts into focus. I am thankful for all of it: the sad revelations, the clear-eyed truth of who I surround myself with. I made little shifts away from the three self-absorbed friends. I don’t miss them, though I sometimes get pangs for the close friendships I thought we had.

I’m morose all day. Can you tell? Poor pitiful me. I’ve never been a loser like this, tallying up my petty sadnesses and slights. Oh well.

December 20th. 

Farmer friends bring hugs and huge grocery bags full of root vegetables, sun-dried tomatoes, and dried herbs, all homegrown. I am weak with pleasure and thankfulness. No better gift to a chef in crisis than heirloom potatoes.

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Jacob goes to the Vegan Shop Up and brings me Hanukkah presents even though we have a strict no-December-holidays-presents rule. Calming toner spray and a calming candle from our pals at Meow Meow Tweet. The MMT sweethearts gave me special body oil to give to my mother last month, knowing how hard chemo is on the skin. I love their stuff so much. I keep the toner spray at my station at work even though the health department wouldn’t approve, and spray it all over me whenever I feel crushed by despair.

My mother might be eating slightly better. Maybe the peanut butter cookies are slowly building up in her system.

Work is wilder than it’s even been, sales-wise, and calmer than it’s ever been, vibe-wise. Every day Jacob looks things up and says something like “yesterday was our busiest day on the website of all time. Today’s been the busiest month in the shop ever and it’s only December 18th.” I guess it’s a combination of everyone knowing they’ve got to take care of themselves because I’m not mentally there to nag them, having hired excellent people in the past year, and all of us just generally getting better at our jobs. It’s our third spin around the sun with this holidays thing, though there were those ten years before that were website-only, which was wild but still manageable. The cycles are so different now. First a huge push of corporate orders, then website craziness then shop craziness.

I organize the Long Containers at night. I try not to let anyone organize the chocolates in the long containers. (Also: the weird language of workplaces. The Long Containers. You sort of just settle into your lexicon, right? Ours is so wild there’s a whole section about it in our staff manual. POP, Pape, RSSC, TSSC, WITW, forever) The Long Containers are where we keep our pieces. Everyone always wants to get all matchy matchy about it. Of course. It’s easy and soothing and you would too. My reasoning is: it takes too much time, it doesn’t get us enough information. You could spend an hour a day doing it, we’re too quick for that. Focus // prioritize. It’s true. Also true is that I wanna do it. I want everyone to leave and then I want to watch The Daily Show and get matchy matchy and inventory away. It’s easy. And soothing.

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On this day last year I wrote:

“last year at this time we were in Oprah magazine but still this year is still busier than last year still. It’s an honor, I’m always surprised, it’s the best thing in my life but anti capitalists gotta think a little about how unquestioned growth should feel weird riiiiight. I have two minutes to think while JJMFP loads more RSSC onto the enrobing belt. Snuggled up next to the rosemary salt. God it smells good. See it’s always felt like a game: let’s try this. Trying to best myself, that’s my thing I know I’ve said it before. When it stops being a game and starts being a factory we gotta have the guts to pull a Mario Savio. Put our bodies on the gears. “Unless we’re free / the machine will be prevented from working at all.” Someone said today, we gotta stop making so many kinds of stuff, man–& woman that’s when I’m out. Come to work make a thousand PB cups go home no thanks. I can’t imagine us ever getting bigger but when I said that today everyone laughed at me. This dude the new head of the Chamber of Commerce keeps coming to ask me to join. I mean can you even. Like a chamber, like a bedchamber? I’d very much like a bedchamber right now.”

We got bigger over the past year. And it’s been ok.

December 21

It is the solstice. I make 22 quarts of hazelnut gianduja and it is the busiest day of all time in the shop. I make my little family dinner I go to dinner with Kate she’s my family too, it is the solstice. My own personal high holiday but I mean who has time.

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I don’t want to jinx it but maybe she is eating a little more? Definitely drinking more, since the day they gave her fluids. That scared her. It should have. Apparently my brother is loading the moving truck up today, driving out tomorrow. The Harriet Judy Party Line is abuzz constantly to the point where my mother finally yells to both of them, separately, on the couch at work with customers in the shop “YES THINGS WOULD BE GOING DIFFERENTLY IF I WAS THERE BUT I AM NOT THERE AND THINGS ARE GOING THE ONLY WAY THEY CAN GO WHAT CAN I DO? NOTHING, SO PLEASE STOP BUGGING ME ABOUT HOW YOU THINK THINGS SHOULD BE DONE DIFFERENTLY.” and Alexis and I exchange looks like “fuckin’ FINALLY.”

I somehow lose my grandmother’s engagement ring. A tiny tiny thing, so thin and delicate, with minuscule diamond chips. I’ve worn it every day since she died, when I was eighteen. Eighteen years ago. What’s with all these eighteens? Eighteen years since I lived with my mom. I tear apart my life looking for the ring. I know my hands shrink in the cold, it’s always been scarily loose in wintertime. I wonder if I’m losing weight too but I only have the postal scale at work and keep forgetting to weigh myself on it.

Is losing the ring a sign? Should atheists believe in signs? Just when I’m most tied to family, a sign that I don’t need to be tied to family for happiness. Keep a part of yourself for yourself.

Now I wear no jewelry, since I lost the knife necklace I’ve worn for years. Those are $35 on etsy and I’m sure it’s in the guest bedroom, though.

I fall asleep idly looking for rings on etsy on my phone—fuck it i’ll buy my own ring—and realize the only rings I can even barely stand are art deco rings from the 1920s that cost thousands of dollars.

December 23

I was getting the enrober going and making bulletproof-style pot-infused-coconut-oil coffee for my mom at 10 am my brother pulled in with a U-haul and two cats and a car and everyone I’m related to in this world now lives in this town.

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*          *          *

It’s the last night of Hanukkah and Maresa makes gingerbread eclairs and I realize I’ve helped a million customers with my undershirt backwards and inside out.

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*          *          *

The night before I get on a plane to go to an island for a month I stay at work late and arrange the staff presents but this year I’m not getting on a plane to go to an island, so I was there when everyone got their treats & that was a treat too. I got them Meow Meow Tweet extra special pouches full of such nice smells I was paranoid whenever anyone went to the back room to get drinking chocolate cups or paper towels they’d smell a mysterious box and investigate. We had Secret Santa this year too, and I wanted to make my deviled eggs for the mini-party but who has time for that. Then we opened up shop real quick and had the busiest day of all time and I know I said that yesterday. And I put one line on Facebook asking for people to help unload the moving truck my brother had driven overnight from Chicago because there’s no way I could leave the shop you know? & I’m used to doing things myself & by myself too but everyone helped, & now everyone I’m related to in the entire world lives within a mile of me and everything feels strange.

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*          *          *

Kate is a guest post for my December Diaries series on Instagram and writes this:

we’re not going crazy, we’re doing really well. shana’s been using a tolstoy paperback as a slapdash phone case, but i think she’d be doing that no matter how busy everything was. yes it’s true that it’s been the busiest month of the busiest year of the busiest shop’s life, and yes it’s true that the to-do list lately has just said “make everything,” and yes it’s true that partners have come in to help us out and work a few extra hours and we’ve needed that so bad, and yes it’s true: no one has really even batted an eye. go in early, stay late, it’s the call of duty and it sort of swallows you up. but i love this work, i love this world, and i’m tired but there’s white chocolate ganache to be made. you’ve got to whisk the hell out of it. the only real thing i want in life is a promise that there will always be things to be done. cut spruce tips \ boil them in apple cider \ make toffee \ make it again \ cut figs \ pipe truffles \ roll truffles \ dip truffles \ ship boxes \ grind juniper \ make caramel \ make cane syrup \ make calls \ help custies \ enrobe everything \ change the mangler blades \ pack for the shop-up \ make nougat \ ad nauseam, but the good kind. it all never ends and i’m glad. it boils down to having gentle conversations on the real grit of life over the induction stove in 40-second increments in between making drinking chocolates and brushing down caramel. two pots of the stuff going at once, side by side, most days lately. i like to pretend the neighboring caramel pots are good friends, but c’mon, we all know that’s impossible. but i’m not sure, see: i don’t know the difference between pots and machines and our hands and our bodies, anymore, it all feels like a big unit. life has been hard but right now the work is right there to be done, and i’m surrounded on all sides with people who are keeping me together, whether they know it or not. the work distracts me, i can dive into it and be a cog. go in early, stay late. the year is twelve punches, and december’s the last one, right? i love this world. i love what we can do in it.

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December 24

My brother takes my mother to chemo. Jacob and I get to sleep in until 9. The shop opens at 10. We sleep until 9:30 and still open the shop on time. Pros. My mother calls me to tell me she’s gained seven pounds. I feel like a worthwhile human being. My plans are working, I am keeping her alive. I feel a lessening of pressure and a tightening of pressure simultaneously. I am keeping her alive. That can’t be true, can it?

I’m so thankful I don’t have to sit at the hospital all day, but I go into work and immediately enter a huge world of rage. Everyone is in holiday-mode, happy and chatty. I hate everyone, can’t help customers, have to relegate myself to the back room. My bones feel tired, my face can’t arrange itself into a shape calm enough to not arouse concern, my legs are aching my brain won’t stop. The Christmas shit hasn’t even been that stressful. It’s just that I hate everything so much. Hate caretaking, but am proud I’m good at it. Hate working with so many people, though I love the people I’m working with. Miss solitude like fucking hell. It’s always darkest before dawn tomorrow’s a day off I repeat over and over. Except that tonight and tomorrow I have to unload a moving van and tomorrow I’ve decided I need to make some fucking huge Christmas meal at my place. We’re Jewish atheists and I’m tired, but as a kid we did Christmas because of my dad and my Catholic grandmother and I know my brother has a craving for Hallmark holiday bullshit and also I really just want to make my vegan deviled eggs, mostly so I can post them on Instagram and use ensure that the hashtag #vegandeviledeggs always refers to my recipe because it’s the best recipe and because it’s slowly being taken over my those disgusting potato angels which actually aren’t disgusting at all but they aren’t as good as the recipe Maresa and I made up and I don’t have an ego about recipe shit ever I swear I don’t, but when some idiot vegan recipe writer stole my I mean our recipe and published it in VegNews I got all fucking uppity about it. Also I constantly crave those eggs. They’re really good.

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I get Christmas presents for my mother and brother. Why I don’t know. I haven’t given anyone a Christmas present in twenty years. I’m not that person. I’m wrapping them and Jacob says, “You know that no one has any presents for anyone else, right?” Not unkindly, just factually. We made a rule 18 years ago of no presents on any day except birthdays, which we celebrate with a lavishness that would make Marie Antoinette blush. I made him chocolate tennis balls filled with gianduja and spray-painted with cocoa butter to look just like tennis balls anyway.

The shop is really busy but not quite as busy as yesterday. I fuck around, useful to no one, feeling angry and sorry for myself and like I’m going to burst at any second.

The key to the thing with my mom

and by the thing I mean

her being so nearby is that

I can’t expect anything from her.

This has been the key to our relationship since I was twelve but suddenly it hurts more. Why? I need to be a mother to her more than ever but the need for a mother is stronger than ever. Everyone else in my community is doing such a great job of that, but. Still.

I talk about this with Kate, figuring that she’s in the same boat with her ill mother (see part 1), but she says that her mom hasn’t been able to be a mom to her for so many years that it’s not painful anymore. Why is it so painful to me?

I have so much compassion for her in the moment but when she leaves even for five minutes I want to fall apart. This is the early stages of the chemo, too. It’s only going to get worse. I know when I have more sleep I’ll be able to handle things better. Who knows though.

I can’t decide if I’m a strong person or not. Indecision on this key point of my essential self seems to mean I’m not.

Making money is a fun game and we’ve all been playing it well, our key people are heading home for the holidays with fat checks filled with 1.2x hourly overtime pay, it’s cute to see their incredulousness at being paid so much. God they’re good people. But I’m so tired of making money. In a week we’ll be closed for 20 days. I ache for days alone in the shop.

Kate made veganized Phish Food ice cream for Shana for no reason whatsoever other than she loves Phish. Photoshopped a special design for the pint and everything. Work is ridiculously nice the day before a holiday, is the truth. Even with my bad head. What if I didn’t have a good job? I’m so weak and sensitive and spoiled I’d melt down completely. Used to, actually. I worked in an office in Manhattan for a year and had tantrums every Sunday night. Got migraines once a week, they stopped the day I quit.

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Close the shop at 6, I let everyone go at 5. Mopping up a girl comes in, Shana’s friend, who begs Jacob to let her buy a Rainbow Cookie. We talk about feminism, she says this shop is such a good home for Shana, that she takes a lot of shit in the real world and she’s so thankful she has this oasis of like-minded people she can come to. She says she’s so proud to have the shop in her town.

Close up, go over to mom’s apartment to unload the truck with Jacob. Kate meets us there and we get it all done in 45 minutes.

Len packed perfectly.

I go over to Kate’s and cry in her arms for an hour, about everything. Then I’m washed clean, feel new, go home and my mom’s sleeping here one last night because her bed isn’t set up yet. She seems rather disinclined to unpack and get her new place arranged. Unpacking and arranging and organizing is my favorite thing in the world, but would it be if I was having chemo at the same time? The dosi-fuser is the name for the thing that she wears in a fanny pack around her waist for two days after the chemo in the hospital. I sit in bed with the informational packet about it, reminding myself over and over how to disconnect it for when I need to on Friday.

Christmas

Stayed in bed until eleven. Tidied the whole house. Took a shower and washed my hair. Laundry. First day off in a month. Thought a lot about that tumor, how it could be metastasizing. Decided to do as big of a Christmas as I could do in six hours. Added Len’s name to the banner. Had planned to bring it to their apartment but couldn’t sneak it in, so I put it up over our mantle.

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I make macaroni and cheese casserole, kabocha squash salad, roasted cauliflower with yuzu, my vegan deviled eggs, cashew cheese canapés with olive oil caviar, mashed potatoes and gravy. I open champagne and put out fir tree cupcakes and rainbow cookies and bay leaf shortbread cookies from Maresa. I put my little pile of presents on the coffee table, put my grandmother’s antique poinsettia-print tablecloth on the table (why did Jewish grandmother have such a Christmassy tablecloth?), set it with her china and cut-glass wine glasses, light candles, Jacob makes a fire and cleans and does the dishes.

I make a Google Doc with key points we all need to know about my mother’s health, what she should and shouldn’t be eating, a section for a food diary. I am micromanaging as much as I can. She’s taking an anti-nausea pill. I think pot would make her feel calmer with no side effects, but she doesn’t want to feel stoned, doesn’t want to smoke. I mention the vape again. Vow to keep feeding her the peanut butter cookies.

When they come over I send the Google Doc to my fancy TV using Apple TV magic and go over it with them. It has lines like

The tumor has already started spreading (it’s around two blood vessels) and is potentially metastasizing around the liver. Chances of long-term survival with metastatic pancreatic cancer are typically measured in months. We need to do work on our own to shrink this tumor. The mainstream medical establishment can only do so much. All MSK is doing is chemo, but chemo can actively hurt the rest of your body. We need to take things into our own hands.

And I realize suddenly that my brother probably doesn’t know all this, at least not so starkly. He starts to cry a little and does his weird little aspie hug thing with her where he basically hits your back in a very odd way. It’s his trademark sign of affection.

(Side note: should I tell my brother he has Asperger’s.

Someone should, right? I diagnosed him myself years ago and every doctor I’ve ever talked to, maybe five or so, says it sounds pretty damn spot-on. His official diagnosis is ADHD but he has no trouble paying attention whatsoever if he’s working on something related to BMX bikes. Pot has helped him not be so hyper more than Ritalin ever did. He’s a good kid. He’s doing the best he can. We all are.)

We eat and no one eats as much as I’d like, though my mom does eat an impressive amount of eggs. I’ve noticed that if it’s a food she really likes, she’ll eat a normal amount of it. I am constantly on alert for foods she seems to like. When I ask her she can’t really answer.

We exchange presents and my mother says about a million times that she has no presents for anyone. My brother and I look at each other over her head and roll our eyes & laugh. I remember one Hanukkah him having a meltdown and screaming at her for “owing us” a million presents. The other day we were talking about the Tooth Fairy at work and I tell the story of how I never believed in her because the first time I put my tooth under my pillow my mom told me the next day that the Tooth Fairy was a little short this week but I’d definitely be getting some money after her next paycheck. The thing is it’s hard to have money when your husband steals all your money for drugs. My mother still lives in this emergency mindset, paycheck to paycheck, putting tiny amounts of gas in her car, buying tiny amounts of food. Worried about being short, always. Once money nervousness enters you, you can’t really ever shake it.

After they leave I begin an hours-long odyssey of researching alternative treatments for pancreatic cancer. According to the internet you’re an idiot for doing chemo over green juices. According to the internet green juices are bullshit and chemo is the only thing ever proven to cure cancer. The rabbit hole will kill you and I know it but what is the answer. Obsessed with wondering if we’ve made the wrong treatment choices. I stay up until 4 am making charts of potential treatments and feel no closer to any answers.

December 26

My mom calls me at 9 AM to tell me the chemo bottle is empty. She comes over and I do the entire procedure of flushing the port with saline and the cleaning solution then removing the needle perfectly. Gloves, a semi-sterile space, alcohol swabs, gauze, an improvised sharps container. I’m on a high for the rest of the day, can’t believe I did it without fainting or throwing up or whining like the baby I am.

I’m growing.

IMG_1032

December 29

She’s doing work at the shop because her office isn’t set up yet and I ask if she wants to step on the postal scale.

One oh three

She seems more upset that I’m upset than anything else, I ask if she’s doing the thing of always keeping food nearby, small meals every few hours, she says oh, I should be doing that, yeah, I ask why she doesn’t seem bothered, I tell her being healthy is her job more than writing stories or unpacking the apartment I ask if she’s taking the mushroom extracts and the supplements and she says “mostly…” in a way that I know means not really and I sort of melt away, and she wants me not to be sad but she needs to want it for herself and i don’t know

i’m scared and sad and just don’t know

Next: “Time Off” & Other Hollow Concepts / Let’s Make A List Of Ways To Keep From Crying Every Hour Of Every Day

11 Responses to “in which i remove needles from my mother’s body and don’t even throw up once”

  1. Lacey

    My heart aches for you and what you are experiencing. I understand what it is like to have a mother who is there, but not there, at the same time. We will talk about this some time. You are a beautiful person. The banner story really hits me- I can imagine my mother never noticing it either. Maybe she would accidentally walk into it and then realize it was there. Remember, you aren’t alone.

    Reply
  2. gandtt

    Hugs. not anonymous, one worded, just writing hugs because I don’t know what to say- but fierce, protective bear hugs from a stranger who eats a lot of your chocolate in intermittent burst because it gives joy. Because no one should have to feel this way, then it happens anyway, and word hugs are all I can do. Finding one thing a day that is good, and focusing on that through everything else- even if that’s vapid sounding- the funny video a friend sends, an old picture, your friends singing silly songs. I call them Anchors because they keep me grounded when everything feels out of control. and Hugs.

    Reply
  3. megillicuddy

    When I was 25, my father had a life-threatening stroke that for all intents and purposes put me in charge of his life — the big, medical, insurance and decision making stuff and the eating, cleaning daily stuff that sneaks up and gathers into something altogether more overwhelming than the sum of its parts.

    It’s easy to understand the ways that being ill disrupts a person’s life, but it’s often overlooked how drastically a loved one’s illness (especially a loved one with whom you have a complex relationship) changes a caregiver’s world, too.

    It. Is. Hard. And it’s bewildering, and feels somehow existentially unfair, but beyond the initial shockwave as everyone learns to navigate changed roles, it becomes less oppressive. Not perfect, but not so claustrophobic, so immediately heavy.

    I’m glad you have so many caring and kind people around you, but be sure *you* are kind to yourself too. It’s not unreasonable to grieve the loss of the familiar, comforting contours of the life you’re accustomed to before you can reclaim breathing room for yourself in a new landscape.

    All the best to you.

    Reply
  4. Daniela

    I will never know exactly what your going through but I can relate with someone I love having cancer. It’s depressing, the constant fatigue of it all and seeing how the body of your loved one is constantly changing because of the disease and medicine, ohhh how I hated this last part, my heart still aches about it. Nevertheless, just like you said, it makes us grow.
    I also relate to you about my mother not being a mother, and fuck, it hurts like hell, even now that I am a full-grown women it hurts. Sometimes mothers just aren’t aware of the power they have over their offspring.
    I am sorry to read how upset you are and how difficult things are right now. I wish you the best for your mother and you.

    Reply
  5. Claire Springfield

    When I was 12, my parents gave me an opal ring for Christmas. My mother told me my father had selected it which meant something to me because he was a laconic, mercurial person, and I liked thinking about him choosing it for me. He referred to opals at moonstones. When I returned home after his memorial service, I had to go to the hospital to tell his younger sister that he had died. I didn’t want her to know until after the fact because I knew she’d be lying there in her bed with no one to comfort her and picturing us going through the service and everything involved. That night when I went to tell her at the hospital, I lost the moonstone ring. I know I had it on when I arrived. I tried to find it. Called the hospital. No avail. I decided my dad somehow pulled it into the universe to keep us connected. I think that may be what happened to your ring too so your grandmother could channel some strength to you.

    Reply

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