living underground in the real world

Things I Did When I Didn’t Know If My Mother Had Cancer Or Not

Thursday, November 13th

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I was making Drinking Chocolate Magic Spheres when my mom called. I knew I should’ve had my phone on me. A hollow round of chocolate, filled with marshmallows. You heat up some almond or whatever milk and pour it over the sphere in a mug and whisk and it becomes hot chocolate with marshmallows. The spheres are tough to make. Were tough, but we figured them out. Everything’s tough until you have a method. Then you try not to deviate from it. And hopefully things are OK from there. The key is to keep the magnets where the two halves of the mold connect really clean. Also a million other things. With chocolate there are always a million tricks.

I was thinking about how Shana was having trouble with them, and Adrienne was having trouble with them, but when I made them they came out fine. I was thinking about how it might have something to do with how I’ve been making chocolates since they were ten years old. I was feeling a little bit like a failure as a boss—why couldn’t I explain how I did it? So many little tiny details. Things you do without thinking. Things your hands can do but you can’t exactly bring into words. I was teaching myself a recipe to teach them when my mom called. Putting things into words.

There are recipes for everything, even magic.

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Judy had called me the day before. “She’s in more pain than she’s telling you. Don’t tell her I called you.”

I call her: “Did Judy call you?” “What? No, why?” “Because she just told me she called you.”

They’ve known each other since they were in grade school.

The little mind games old friends play.

I should have had my phone on me, but I didn’t. I saw the message five minutes later.

“Hi Gus.”

Real bright tone. My stomach sank.

“Can you call me when you get this?”

She’d been having stomach problems for months. Digestive problems her whole adult life, so at first we didn’t think much of it. It kept getting worse. She cut out all raw food, no salads, raw vegetables. So much pain every time she ate. She was losing weight. All the tests kept coming back perfect. She’s 72, vegan for over 20 years, yoga twice a week, walks around the neighborhood on her lunch hour every day. Finally, her doctor said she should get a CAT scan.

I called.

The CAT scan showed a mass on her pancreas. It all fell into place. The backaches that seemed unrelated. Digestive trouble.

They couldn’t conclusively say if it was cancer or not. She’d have to get tissue samples taken, it was a Thursday, it would have to wait until after the weekend. The lab tech apparently told Judy that it didn’t look good.

Who says that? How would they know?

I guess they know.

Have I ever mentioned that my mother’s the only person in my family? How perfect she is? How she drives me crazy because she’s my mother but how we’ve been best friends since the day I was born? I have a brother, and he’s lovely, but my mother is my whole world.

While pancreatic cancer survival rates have been improving from decade to decade, the disease is still considered largely incurable. According to the American Cancer Society, for all stages of pancreatic cancer combined, the one-year relative survival rate is 20%, and the five-year rate is 6%.

I sat on the back room floor for a while. Called and texted with my holy trinity: Jacob, Kate, Maresa. Cried a little.

What do you do, then? I couldn’t start making plans yet. I didn’t want to go home and sit in bed.

I made orange confit.

It sounds fancy but it’s just orange peels boiled in syrup. We use it in a white chocolate ganache with cranberries. All the holiday chocolates are coming back around. I’m changing the recipe for this one this year, it’s never been quite right.

This is my favorite time: when new chocolates are my secret. Everyone’s nosing around, seeing what new things they’ll be working on soon, but I selfishly hoard new flavors for as long as possible. I miss the quiet days of me teaching myself new techniques. They’re rare now, so I have to really luxuriate when they come around.

I have a trick for this, for keeping my head in a special spot in the middle of a busy shop and production kitchen. Thoreau taught it to me in high school but I didn’t realize I could pull it out at will until one day toward the end of my senior year, when police beat down my door and hauled my father off to prison for dealing drugs. I was handcuffed on the couch and I realized I could just—

not be there.

 

I have travelled a good deal in Concord, indeed.

It’s my only trick: teleportation. As the shop has gotten busier and busier I’ve gotten better and better at it. On my worst days it fails completely, my head is scattered and I pick up one small task and another and don’t finish anything because of constant interruptions and an inability to be sure that what I’m working on is the Absolute Best Use Of My Time.

On my best days I can dive into it like warm water, let the chocolate teach me things, work completely in the flow of a calm mind, and, more importantly, can instantly swim back up from it when someone asks me a question. The temporary, temporal transcendentalist CEO.

My father went to prison for years and years and it was the best thing that had ever happened to any of us. Maybe not for him, but who cares about him. I never think about him. Sometimes life gives you gifts like that. The gift of forgetting.

Here’s my way into transcendentalism: focus on what you’re focusing on. Do what you’re doing. The present is a present, so stay present. It’s the fucking hardest thing. But when you do it—time sinks, becomes malleable. It’s completely yours.

I chopped the orange peels and made my simple syrup for them. Switch over your brain, what else are you going to do.

 

Friday.

My mom went to see her GP. Why her regular doctor? It annoyed me. No appointments for oncologists available until Tuesday. She called me afterward. There were no customers so I sat at the counter in the shop and stared at the parking lot. Leaves to rake, the little scrubby garden I hadn’t bothered to put away for winter. I’m the worst. At the first sign of cold fingers my gardening days are done.

She sounded upbeat. Her doctor told her that pancreatic cancer used to be much more serious than it is now, that new treatments are resulting in much higher survival rates.

A few hours later Harriet called me and told me all the depressing stuff the doctor had said that my mom had left out.

Harriet knew she had left them out because she was in the car with my mom when she called me. I knew Harriet was in the car when my mom called me because I could hear Judy and Harriet yelling at each other from the front seat while my mom was talking to me. Harriet, Judy, and my mother converse in a style particular to Jewish women from Chicago, particularly baby boomers who grew up in the same Lakeview neighborhood: constant yelling coupled with a persistent insistence on being right at all times. “Why did you take The Drive!!!” is what I think I heard, but that’s probably because whether or not to take Lake Shore Drive seems to be 80% of their conversations.

Harriet will be on me because of the swear, a few paragraphs up there. Like my mother, she’s a journalist and editor. Words have power, and swear words are lazy words. I swear because I fucking can’t stand people who take themselves too seriously or think they’re good writers and I need to trash up my writing a little, so I don’t get all fucking precious about it. Writing’s not my job, though sometimes I act like it is, so I can afford to fuck around with it.

Harriet will not like this.

Harriet filled me in on everything my mom hadn’t said. Five-year survival. How I need to start Googling, doing some research, making some plans.

I got off the phone and stared at it for a few minutes.

No one was talking about how the mass could be benign. The Google searches I had been doing (“pancreatic mass often benign” “pancreatic mass usually benign” “pancreatic mass definitely always benign” “pancreatic mass never malignant”) had been giving me false hope, I knew, and I didn’t want to be talked out of it.

When I’d first called Jacob, we talked and he was calming and perfect, as always. And when he said “I bet it’s malignant. People have malignant tumors all the time” I actually laughed, and said “Sweetheart, you always mix up ‘malignant’ and ‘benign.’ Now might be a time to get them straight.” He apologized about a hundred times. We laughed in that rueful way.

I called Lucy and started crying the second she picked up. Can I come see Henry? She asked what was wrong. “Can I just come see his face? Can Kate and I come over?” As soon as we were done with work, we went over.

Honestly? Already it hadn’t been the best of weeks for my small circle.

Lucy’s partner had had emergency surgery and was recovering at home, a few houses up the hill from my house. Her newborn had had to have small surgeries twice in the first month of his life for being tongue tied, which it turns out is a real thing.

And. I’d actually had a small surgery almost two weeks before, ironically intended to ensure I don’t get cancer. It was taking longer than I had hoped to feel normal. These things always go like that. Oh, and Kate’s mom had recently been in the hospital, and Kate’s MS was flaring up a tiny bit, and Jacob called me from tour right after I talked to Harriet, shaking, to tell me he had just watched a horrific car accident that he could have easily been in, but decided at the last second not to follow the car ahead of him into an intersection. My cat Cleo was acting strangely and needed an emergency vet appointment—in the end it was just a small infection, but still scary in a 14-year-old cat. Maresa was the only person in my small circle without unfortunate things happening to her. I am not a jinxy kind of person but I thought of her with such happiness, just for a second, after hanging up with Jacob. Keep on keepin’ on, Reesey.

Henry’s face and wiggly arms did their tricks. Even a mean old childfree crone like me falls in love with her best friend’s month-old baby, you know?

When I got back from Lucy’s Kate came over and made me dinner because what Kate is good at, from having a mom who’s been sick her whole childhood and from just generally being a stellar person, is taking care of people when they need good food and to be listened to while you ramble out everything in your head.

I ate and rambled it all out and then I called my mom. She sounded upbeat. We were both just waiting out the weekend. What was she going to do?

“Well, usually on Saturday mornings I go to PetSmart because C.A.R.E. has a table there to try to adopt these cats from the shelter [for the past 12 years, my mother has devoted her weekends to volunteering at a local no-kill animal shelter, C.A.R.E. See I told you she was the best.]. But, and this is very strange, right now there aren’t any cats to adopt. They’ve all been adopted. There are new kittens someone dropped off in a box on the doorstep one night, but they’re not ready to be adopted yet. So…so I guess I won’t go to PetSmart tomorrow. Oh, but—there’s a demonstration against Ringling Brothers on Sunday I’m going to go to. Those are my only plans, so far.”

“Mom, you are definitely the only person on earth who is waiting to hear whether not she has cancer and makes plans to go to animal-rights demonstrations in order to take her mind off things.”

She laughed.

I told her I loved her and she told me she loved me.

 

Saturday.

Saturday was the Vegan Shop-Up in Brooklyn. My business and Maresa’s business have a table every month. Maresa hauls everything down and Than meets her there and sells for us. Maresa called me. She forgot her macarons. She was an hour away. Hundreds and hundreds of dollars worth of product.

Reesey is something to watch at the VSU, let me tell you. Lines all day long. She sells her stuff at our shop, of course, but pop-up markets and mail-order are a mega chunk of her business. I loaded up my car with macs, drove down to meet her. We met at Woodbury Commons. I’d never been to Woodbury Commons, but I had the fleeting thought of freaking everyone in my life out by buying an entire new wardrobe of ultra normcore basics at some horrific outgassing temple of sweatshop consumerism like Ann Taylor—just coolly sauntering into work wearing a lavender pantsuit or something.

If you dress different, are you different? Do different things happen to you? Can you change the future by changing you?

On the way down I listened to “You’re Invited” by Jeffrey Lewis over and over. I knew I was doing that thing of listening to a song too much so that later on you associate a time period in your life with it, and I didn’t want to, but I couldn’t stop myself because I wanted to fill my brain with the lyrics to a new song so that nothing else could get in. Self-soothing, whatever works. Kate had known about Jeffrey Lewis for forever, he’d played at her house years ago, and had just inducted Maresa and I into his anti-folk softpunk world. We were both getting mega into him. Maresa had commissioned a drawing of Kate from him for her birthday. He obliged, and Kate was so surprised when she opened it. Maresa had loaned me two of his CDs a few days before.

It was very sunny and very beautiful and very cold when I was driving. There was snow on the trees in the mountains but still leaves were still flaming that hot orange of late fall. I sang the song, I taught it to myself.

I turned over plans in my head. My mom had been talking about moving to New Paltz for almost ten years, and had already made preparations to do so next summer. Last night on the phone I’d said that the NYC hospitals had excellent cancer treatment centers, and would she consider having treatments out here? I could cook for her, drive her, take care of her. I was nervous about asking her. I wanted her to be near me more than anything, but obviously it had to be her decision. She sounded relieved I’d asked, said she thought that was a good idea.

I had friends lining up to help. Everyone was offering everything. Mark said that he would drive out to Chicago to pack up all her stuff and drive a U-Haul back. I knew he would. Mark is one of those people who has oriented his life so as to triumph over the skull-crushingness of the typical work schedule. This leaves him lots of time to help out friends who need, say, a semi-truck full of custom cardboard boxes unloaded and packed into the store room in the middle of January. The friend no small business owner can be without.

He and my mom had become mega BFFs over Facebook and during her summertime visits to New Paltz. Once my mom’s flight to visit me was rerouted from Stewart Airport (20 minutes away) to Newark (1.5 hours away) and I had a crazy work day and couldn’t spare the time to pick her up. He heard Maresa and I discussing the situation and didn’t hesitate, wouldn’t take no for an answer, jumped into his car. On the way back they talked about plays, literature, the New Yorker. Besties, just like that.

After I got back from the macaron delivery, I cooked.

I made radish pickle. I made sauerkraut. I had a lot of CSA veggies still. I made chickpea tagine with homemade harissa and charmoula, an old Deborah Madison recipe that takes all day. I put most of it in the freezer. Eating one of my favorite meals felt wrong.

As I was cooking I kept almost cutting myself, almost burning everything. I went to the storage room to get Drinking Chocolate cups and slammed my kneecap so hard on the doorframe that I collapsed on the floor howling. Off my game. Off-kilter.

I hobbled around while my knee recovered. Made another round of pretty great spheres, and tried to show Shana what I was doing differently from her. I felt the pressure: soon people were going to want to buy lots of these at a time, and there was a slim chance I wouldn’t be there to make them. Everyone had to get up to speed. Shana’s were still breaking in half along the meridian. “Clean the mold better. Use less chocolate to seal it. Blow-dry the chocolate longer.” All my ideas got her closer, but they were still breaking. How was it possible that I was this bad of a teacher? Partly I wanted her to figure it out for herself, to have all the failures so when it went right she came by it honestly.

You need so much time to fuck things up before your hands do the right things. So many little steps.

 

Sunday.

On Sunday Kate and I ran errands. Anything to use up my brain. My knee was fine as long as I didn’t walk up any stairs. I bought new sheets–Target has organic cotton sheets, who knew. I cleaned my house. I answered all my emails. I worked on our website. I only went into work for a bit. Everyone was still having trouble with the spheres. I was still making them fine. What I needed to do was have everyone gather around and make the spheres while they watched me but god I hate stuff like that. I’m lucky I don’t have a boss because I can’t ever do anything right when people are watching me do it. My magic comes from solitude.

We sat at Outdated and I wrote Harriet, Judy, my brother, Jacob, and my mom a long email with a plan I’d detailed for moving her to New Paltz, if the Tuesday appointment went the way we were hoping the Tuesday appointment would not go. I think I freaked everyone out with how detailed it was (“So the next few days will be packing. Sort everything into three piles: to keep with you, to put into storage in New Paltz [there is a storage place 5 minutes away from my house, so you’ll have access to everything whenever you’d want), and to donate…”]. If I can get all fucking Martha Stewart about something, I will.

Brenna texted me a photo of the spheres right before the end of the day: Adrienne had figured out a method and they were coming out perfect.

I texted my mom to ask how the circus demo went and the movie she went to last night. “Good morning. Snow on the ground! The movie was good. Demo cancelled today—not enough people signed up. Will go to C.A.R.E. board meeting. How are you?”

So: my mother, who may or may not have cancer, was willing to stand out in the cold holding a sign telling people that elephants in circuses live terrible lives, but no one else in Chicago was, so the circus went on as planned. Does anyone go to demos anymore? I don’t go to demos anymore. My mom goes to demos.

Harriet called me at 12:45 AM and told me all the books she’d read recently on her Kindle (“Gussy. Now, your mother hates that I read on my Kindle because, you know her, she’s in love with books. But I like to make the text bigger.”). Distractions. She told me not to tell Judy that she said this but that Judy was too emotional to help my mom out right now—after the movie Judy collapsed in tears in the theater, begging my mother not to die.

My mom left that part out of the text.

Harriet said when my grandmother died she left a locket in her will to Harriet that my mother had always loved. Harriet seemed to feel that the locket had been a source of secret contention for the past nineteen years, but, knowing my mother, I doubt she was too broken up about it. She’s not into jewelry except old turquoise hippie stuff (which I’d begun stealing when it became old turquoise hipster stuff). But she said that after the doctor on Friday she took off the locket and gave it to my mother, telling her that she wanted it back when this was all over.

The strength of women.

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Monday.

On Monday Jacob came home. That exhaled breath.

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I took photographs of chocolates for the holiday collections I wanted to launch that night. Mondays are my favorite days, shop-closed days, the only day I get to let my mind stretch out in the shop without having to use transcendentalist trickery. I get to use all the counters, all the sinks, play the first Rilo Kiley album on max volume over and over again, Maresa in her kitchen next door shouldering trays of macs into the front kitchen oven and telling me about her mom’s boyfriends or what her dog Lydia has rolled in on hikes recently (horseshit/dog diarrhea/squirrel remains). I give up a day off to do it and I don’t always do it but it’s always worth it. Maresa was in her post Vegan Shop-Up bliss (even coming late, she still sold out by 3:30) and didn’t come in. I missed her, but the deep quiet was good.

Kate read a spoken word piece at a zine workshop a few weeks ago. She said this one line I can’t get out of my head: “Everyone I know is kind-hearted because I’ve cut everyone who isn’t out.” Me too, pretty much. Being tough in order to have the softness. God it feels so good to be surrounded by soft people. I’m the least kind person in my circle, by far. Something to think about, Lagusta.

My mom emails me. The doctor’s office for the appointment had tomorrow called and said there’s no point to the appointment unless she has biopsy results. So she scheduled a biopsy for Wednesday. Depending on how it goes, the Best Pancreas Man In Town will see her for a diagnosis and treatment plan meeting later in the week or, more likely, next Tuesday. Another full week to wait.

How can we be living in a world where things move this slowly? This thing of owning my own business has completely fucked me for living on anyone else’s schedule. I want it my way right now. Everyone does, but since my life runs on my rules pretty much completely I’m more petulant than most about it. What’s that thing Shaw said? “The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.” That thing. I’m the goddamn unreasonable man. I wanted to call the doctors on Tuesday, get her in for the biopsy the same day, and an appointment with Pancreas Man on Wednesday. But my mom tells me Pancreas Man only sees new patients on Tuesdays. Seriously? I make fucking chocolates, the least important job on the entire planet, and if someone has a last-minute party we’ll work around the clock to get their truffles to them. Pancreas Man holds people’s lives in his hands and he only sees new patients on Tuesdays? I guess this is how the world works. Fucking insanity.

I call my mom. She is eating sauerkraut. Before this thing started—this thing being: this thing of her maybe having cancer—I was trying to convince her she could cure all her digestive woes with fermented foods. She takes pains to tell me that the sauerkraut is from “the refrigerated aisle in Whole Foods—not shelf-stable.” Little signs that she’s in it for the long haul, probiotics and all.

I ask for the number of her doctor, if she minds if I call to see if this process can be expedited, and if they can Skype me into the meeting. I can’t tell if she’s relieved I want to make all these calls or annoyed. I ask her if she minds again. “Mind? No, I’m so thankful, Gu.”

I am 36 years old and my mother calls me Gu. When my brother was little he couldn’t pronounce my name. Like the rest of the world. It’s ironic that I spend my life gently correcting people—“it has a ‘gus’ in the middle, not a ‘goo.’ It’s tricky, I know.” only to have my only two family members consistently call me Goo. Or Gussy. Lucy somehow started calling me Gussy, too. It would annoy me if it was anyone else. But Lucy says it with sweetness, like my grandmother used to say it.

I tell her if Judy is being too emotional and bringing her down she doesn’t have to hang out with her, and she tells me that even with everything she’s still so amazing—she won’t let her take the L to work and insists on driving her. My mom hates winter as much as I do, we both have that Raynauld’s Syndrome thing where our extremities are set on fire with white-hot pain if exposed to just a few minutes of cold weather, but she always says she doesn’t mind taking the L to work.

I ask her what she’s been eating, she says a hamburger restaurant was giving 20% of profits to C.A.R.E. today (“the irony, can you even believe it!”) so she and Judy went there for lunch and “it was horrible. I got a veggie burger, which they said was vegan. Let’s hope. But at least the money went to C.A.R.E.” She also told me the consistency at Native Foods has gone down terribly. “Terrible. I don’t know what is happening with them. I wrote a post about it on the Chicago Vegetarians Facebook group and lots of people agreed with me. Everyone says it’s getting ridiculous.”

We’re about to hang up and she says “oh wait—one more thing. OK, I was watching Seinfeld reruns [my mom’s obsession with Seinfeld is deep and wild] and Shantih got on my lap and I didn’t want to disservice her [cute wording sic throughout] so I just watched the next show that came on and it was called Two Broke Girls—have you seen this dreck? At first I thought it was so stupid that it was a parody, like a parody of itself, which I thought was pretty clever, but then I realized that it wasn’t a parody, it was just stupid.

So…that’s my news.”

 

Tuesday.

I wake up early, sunken with sadness. Read the news on my phone, take a bath and read The New Yorker. Depressing short story about a loveless marriage. The New Yorker is the The New Yorker is The New Yorker.

Hardest of hard frosts. I meant to harvest the last of the roses yesterday to dry for pomegranate truffle decorations but today they’re limp, ragged. Dead faces turned to the ground. Twenty degrees colder than average.

I wear long johns and skinny jeans and struggle with high waist / low waist differential all day.

On Halloween I was Mary Tyler Moore, hacked six inches off my hair to make a sort of long bob thing and coaxed my side-swept long bangs back into their longstanding Winnie Cooper arrangement. Cutting your own hair is a horrible idea. I do it because I can’t stand any of the salons in this town, any town, can’t stand how they always want to “do” my eyebrows. I can’t imagine what constitutes “doing” an eyebrow and have vowed to never find out. Something about the idea of fucking with my eyebrows depresses me almost more than anything else on earth except maybe the idea of my mother maybe having cancer. Every morning now I cut a little bit of bang or bob. Aiming for perfection always just shows you how far you are.

I’m equal parts upset that there’s not going to be a diagnosis today and relieved that my life will be normal for another day.

Tuesdays are big days in the shop: the weekends deplete everything so much and being closed on Mondays means by Tuesday there are lots of orders and the shop to restock and everyone’s reenergized for another week. It felt shamefully luxurious to have everyone asking me questions at once after our morning meeting, to have a fresh round of emails to answer, problems to solve. Work thoughts to think.

I go to the doctor to get the biopsy results from my surgery two weeks ago. Her office is in a cancer treatment center and going there gives me violent stomach cramps. I spend ten minutes doubled over in the bathroom before the appointment because being in a building with “CANCER” in huge letters on the façade seems such a bad sign. The appointment takes five minutes: the biopsy got all the dangerous cells and none were malignant. Benign benign benign. Because it was extremely unlikely to be cancer I’m not as relived as I probably should be. I instantly ask if I can get her opinion on pancreatic cancer. Her face changes. She tells me numbers to look for, questions to ask, how to pick a good doctor.

I ask if when she hears the words “pancreatic cancer” she knows it’s a bad one. She says yes. “It’s a very serious cancer. I’m so sorry. I hope it’s benign.”

 

Wednesday

Tuesday night I couldn’t sleep. I stared at the shifting stars outside my window, stared at Cleo sleeping on my chest. My mom texted me at 2:30, answering a text from me at 10 PM. I thought of her staring at the same stars outside her bedroom window. I thought of Fievel: An American Tail, which I weirdly remember watching with my mom as a kid and which I definitely haven’t thought about in twenty years. A great animated movie about Jewish mice. When I emailed my mom what her insurance was so I could make calls about coverage in NY, she wrote back “OK, my primary insurance is Medicare (thanks FDR even if you didn’t like Jews!)…”

I fall asleep around 5, wake up at 8:30, clammy and scared and wanting to see my mother’s face badly. I want to be there for the appointment Tuesday but logistically it doesn’t make sense: flying so close to Thanksgiving will be crazy, the shop is busy then, and no matter what the outcome is I’ll be flying back soon anyway. I think about just driving there, today, right now.

And I think about what I’ll wear today. I know there probably won’t be a definite diagnosis today, but I figure that a girl wearing a ludicrously optimistic outfit can’t get bad news, and dress accordingly.

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I remember the outfit I wore one day in mid-September just after the turn of the century when I had to run a work errand in lower Manhattan not only because it still sits, never worn again, infused with smoke and sweat, in a bag in a box in the furthest corner of my garage. Mostly I remember it because I remember every detail of the day, can instantly call them up and swim around inside the sickening detail of that sunny morning.

(Also: because I was wearing a ludicrous top hand-sewn out of a pillowcase.

Also: because it was an idea straight out of Martha Stewart Babies magazine.)

I go to work. Make spheres and do paperwork. I’m exhausted and sad and unable to do anything but drag myself around. I eat lunch at the little table in the back and feel like I’m slipping away from sanity, want to put my head on the table and sleep for the rest of time. Shana gives me magical energy tea.

My mom’s biopsy is at 1. It involves her swallowing a camera. “A tiny camera,” everyone says. I want to see her face and give her a hug and make her a Drinking Chocolate to put in her throat instead.

I hate everything.

When I was growing up and my dad busy was being the Worst Person Alive, I always took comfort in my body. Self-soothing is the word for it but I didn’t learn it for another thirty years. Hugging your knees, murmuring to yourself, I was the best fetal position curler you ever saw. I developed a feeling that my body was sacred, intimate, friendly, safe. Handing it over to doctors always feels like a violation, even a routine pap smear or blood pressure test.

I treat myself too gently. When real life jumps in it knifes me so hard.

Thinking of all the tests she’s had in the past few days.

And all that’s probably to come.

Some guy comes in to talk to me about how he could set up some meetings with Whole Foods buyers and I tear his face off. “Not interested. To me that would be selling out. Plus, they’re going to demand prices less than our wholesale prices, and I won’t budge on my wholesale prices.” Then of course Jacob was all interested in having a meeting with him, like a normal business owner would be. I gave him his card. If it weren’t for Jacob my high & mighty inconsistent hypocritical radical politix would have run this business into the ground long ago, probs. Mostly I just love telling middle-aged white guys their business advice isn’t wanted.

The biopsy stretches into the entire afternoon. I’m in contact with Harriet and Judy about everything: is she cold? She has a heater blanket on her legs and one on her back. She’s asking for a bagel. Her throat hurts. She needs more blood work. Her nurses are identical twins.

Harriet texts me in an hour.

“Definitely a tumor. But in a good place. One lymph node may be involved.”

“Is she awake?”

“Wide awake. My battery is almost down. It is cancer.”

 

The digital age.

This is how things go.

 

More talks and texts reveal they still aren’t positive, but positive enough to begin setting plans into motion. Tuesday the doctors will go over all the tests and discuss treatment options. My mom is woozy, exhausted, starving from not having eaten for almost a full day, parched from having a camera jammed down her throat and blood taken and all the rest.

I tell her I’m getting on a plane. Jacob looks for flights, has millions of miles he can use. She begs me not to. We talk. I’m trying to figure out if she secretly wants me there. If it was me, I’d want to live the next three days as if everything was normal, knowing after Tuesday nothing will probably be normal for a long time. I wouldn’t want to entertain my high-strung daughter, perennially rutting around the kitchen cabinets rearranging the spices in precise alphabetical order, bothering me with endless list-making and berating me for not keeping my kitchen knives properly sharpened. I tell her I’ll wait until Tuesday.

I go to dinner with Reesey and Jacob, come home and sit in bed and do work and text Than, sweetest light in my circle of sweet lights. He’s so kind and insane and full of good ideas and clearly insanely high (“it all makes you think about the fleetingness…and reminds us to cherish, as cheesey as it sounds… For you, work and industriousness have always been salves and therapeutic…it’s all about balance, yin and yang—said the Asian.”) and it cheers me up.

I have no plans for Thanksgiving. This is the joy of being a small business owner who sells a product intensely tied to holidays (“too tired to do anything, need to rest up for Black Friday”), a radical anarchist (“fucking Thanksgiving? Are you fucking kidding me?”) and living away from your two family members. Jacob’s usually on tour. Kate goes to her mom’s place in Syracuse. Maresa wants us to go to her mom’s place in Kingston. I’m still sort of burnt out from ten years of cooking bulk meals for other families, all those pies, all that squash scraping, ugh. Over it. Usually I make mashed potatoes and shiitake-beer-miso gravy and go in to work to indulge in the deep quiet.

This year I just want my mom to be here, I want to do the whole damn thing. I have so many great recipes from those ten years of commercial cooking I never make anymore. I keep doing calculations: appointment is Tuesday, if they give her the OK to have treatments in NY she could get on a flight Wednesday? Should I make a shopping list? Will she want to fly the day before Thanksgiving? On Thanksgiving? Where is my grandmother’s silver gravy boat, that box in the garage?

I just want to make her pumpkin pie.

Adrienne’s spheres are still coming out perfect.

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Thursday

I sleep from exactly 4:35 am to exactly 8:29 am. I’m tied to my phone to provide constant distraction from my mind at all times, so I am hyper aware of the time. I spend my nonsleeping bed-bound hours reading about the absolute stupidest shit imaginable. It seems a fairly good strategy until I go into work and begin the morning meeting by telling everyone about how Tori Amos has had a lot of plastic surgery and Kim Kardashian wanted to adopt an orphan and the orphan said no.

I feel giddy at work, so thankful for a little time to think about something as stupid as candy. It’s so busy, everyone rushing around working on their little projects. During busy times I mostly answer questions, put out fires, strategize, computerize—allow others to do their work. Bump along from one thing to the next, and try to stay late or come in early if I want to do real cooking or making or thinking. I don’t mind it as long as I know it’s going to be like that. I like being carried along on the tide, hopefully being the ant that allows the other worker ants to keep working.

We’re preparing for the holidays so crazily that I get the feeling throughout the day that the walls are pushing in on us and our bodies are being pressed closer and closer to speed racks crammed with trays and massive boxes full of chocolates. Everywhere are stacks of drinking chocolate mixes as tall as your body or 600 caramels just hanging out. We’ve never been this prepared before. I know it will pay off, but it’s such a huge labor gamble. Jacob keeps looking at numbers from last year and reassuring me that we’ll be happy we thought so far ahead. Silently we’re both also saying: especially if I’m not around that much soon.

I spend the morning making calls: insurance insurance insurance doctors doctors doctors. Emails to friends and customer-friends who might have insights on doctors, hospitals, cannabis.

Kate and I make the orange-cranberry things and everyone spends the afternoon in the shop talking about all the weed-infused chocolates we could make for my mom. Everyone gets all fired up about it, obviously. We’re real good at infusing flavors into fat. I tell my mom this is the topic of the day at the shop and she says “I hadn’t thought about that! Wow, something to look forward to.”

I ask her how often Harriet and Judy have been calling her and she has to interrupt me to click over to Judy calling her because “unless I tell her I’m talking to you she’ll just keep calling.” They’re averaging about 5-8 calls a day.

She’s at work, doing interviews, writing stories. Editor-in-chief, Chicago Jewish News. My entire life my mom’s made a living writing. She journalist-writes all day at work then comes home and creative-writes. She wrote herself out of her bad marriage with a novel so black it’ll break your heart. I thought she should call it Marital Rape, Cats I’ve Loved, and Other Tales from Twenty Years Spent With A State-Certified Psychopath, but in the end she went with another title. I think suddenly about all the new material she’s going to have soon. Writers always need new.

 

Friday

I sleep through the night. Who knows why you can sleep one night and not the other.

Brenna’s birthday party in the morning. Kate and I go to Dedrick’s to get a copy of Cat Fancy to decorate the shop with. I buy bobby pins. The cashier calls us “girls” twice and it annoys Kate, but I point out that we’re buying Cat Fancy and bobby pins.

Shop birthdays are getting insane. Maresa’s always made cakes and we’ve always had decorations but recently we got into this thing of Jeopardy! for everyone. Brenna’s topics were Cats (Brenna likes cats, did you guess), Feminism, Gilmore Girls, Name That Tune, and Music: Female Singer Edition. Everyone takes a category and makes up the questions then we all come in early to decorate. (I don’t know where these people keep coming from that we’re hiring but I hope the pipeline never dries up.) Brenna’s really surprised by her party because her actual birthday isn’t until Monday. I’m relieved that she likes her cake flavor, coconut—when she sees it she says her grandmother just asked her what kind of cake she wanted and she said coconut. Phew. We don’t ask people if they’re vegan when they apply but 90% of our staff is vegan because an insane number of vegans apply to work at a vegan chocolate shop—who would have guessed. Staff birthdays started getting a lil more lavish around the time Shana teared up on her birthday and told us she’d never had a vegan birthday cake—even after becoming vegan. Last year apparently her housemates put some peanut butter on a sketchily-vegan premade piecrust and called it a day. Fuck that noise. Maresa cakes and personalized party games it is.

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Another busy day. They all will be until January first, when we close for our three-week sabbatical. Then it’ll be Valentine’s insanity.

I decorate chocolates with cocoa butter colorings and colored white chocolate and I do a bad job of it. Off-kilter. It’ll probably be this way for a while. Trying to do things like I usually do them but the continual news ticker of cancercancercancer on the bottom of the television screen of my life is fucking with my concentration. I don’t beat myself up about it. I’m mega zen all day, transcendentalist princess of the universe not working so well so I just stay calm. An OK exchange for the laser beam mind I’d rather have. I’m in airplane mode, power saving for what matters.

So thankful for the energy made possible by a full nights sleep, I do a hundred million little tasks—all the stupid things that don’t take up much brain space but make life in the shop easier. Jacob and I are working together like we do when things get busy and he’s home from tour: seamlessly, efficiently, each understanding the other’s goals with perfect clarity. We’re using the shorthand of people who’ve been a team forever. We’ve been a team longer than some of the people working at the shop have been using language. When we got together several of the shop-women were in kindergarten. Ridiculous to be this old.

Mark comes by the shop because he wants to take Maresa to this diner that Gretchen told him has amazing vegan spaghetti. When you live in upstate New York, any new little vegan revelation—any randomly halfway decent vegan dish at any random halfway decent restaurant—is an occasion for texting all the vegans you know and telling them they must go immediately. The other day the two of them told me the new Mexican place in town is “excellent for vegans.” I ask them what they got and it turns out the only vegan dish was a plate of basically guacamole. I’m up to go anytime. Sign me up.

I haven’t seen Mark since the news came down, and I tell him the latest. He gives me the warmest hug and tells me he’s ready to do anything I need right now. “I’m trying not to come on too strong, but you know I mean it, please call me anytime.” And I know he means it and I know it will come in handy and even though I’m not a hugger I hug him back hard.

Jacob and I go out to dinner. There’s one of those culty pan-Asian formless vegan spots half an hour away. (In high school I fell into one of those cults, but that’s a story for another day.) I’m not in a cooking mood so much and their rose-date tea and wonton soup always makes me feel like a human when I need to be reminded I’m a human. On the way home we discuss every option and plan the doctors could recommend on Tuesday and formulate a strategy for each one. I feel strong and ready. My team.

 

Saturday

Made Portuguese Kale and Potato Soup, an old Bloodroot recipe, for the Sliding Scale Socialist Soup Special. Made Cuban coconut rice and peppers for lunch. Made some raspberry cream cups.

Made a lot of Drinking Chocolates for customers. Wished I’d made all of the Drinking Chocolates, but if I’m not at the stove when an order comes in Brenna gives the task to someone else. It makes sense, usually I’m doing too many different things to be the drink-maker. But I really need to make Drinking Chocolates today. It reminds me of working on the line in restaurants, a world where everything goes well as long as it’s organized, clean, focused, and precise.

It is a busy day at work.

Kate plays a show at Market Market that night. I go with her and her housemate Matt and we meet Maresa there. Trippy makes me champagne cocktails and I drink two, first drinks I’ve had in a month or so. Weird. Kate’s singing gives me chills as always but I feel guilty being out in the world. I come home to Jacob in bed with a thermometer and a mysterious pain in his arm. I Google around to see if he’s having a heart attack, but it doesn’t seem likely. He takes an aspirin and I wake up a million times during the night, scared he’s not breathing. Morning comes and he feels fine.

 

Sunday

Maresa’s streak of being the only person in my sacred circle without personal troubles breaks. Nothing major but still sad. I tell her I jinxed it by writing this diary. She and Jacob and I take the afternoon off, go for a hike with her dog. Nature does the thing it does: soothes your heart. Lydia’s good for that too.

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We come back to work and Adrienne has made 450 Ginger Nibby Bars and is still working on them. She’s goes until closing time and then Jacob and I take over so she can go home. We haven’t made chocolate together in a while. It’s soothing.

We keep getting orders for Peanut Butter Boxes, for some reason. It seems weird, then I remember they’re the chocolate I named for my mom. The chocoverse knows all.

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Monday

Wake up in a rage. First thing I do is leave an ultra-snotty comment on a post on the New Paltz Times’ Facebook page. I haven’t been an asshole on Facebook in years. What the hell.

Uh. Was the part about the proposed lawsuit intentionally left out of the article? Real shoddy work. Your first paragraph sets up a thesis that the rest of the article should explore. FYI.

Kate’s mom was out of the hospital, then went back into the hospital and promptly broke her pelvis. In the hospital. Her mom’s been sick her whole life and this is the sickest she’s ever been her whole life. That’s saying a lot. Half the drugs she’s on are to counteract the effects of the other drugs she’s on, slurred speech, the whole thing. She’s been like this for days. Unlike me, who takes comfort in working everything out loudly while working, Kate is completely silent about personal problems at work.

But even the strongest trees bend in even stronger winds, or some trite metaphor like that—eventually the knowledge that her mother is going downhill hits her, and, of course, it happens the day before she’s due to drive home for yet another in a long line of holidays spent in a hospital room next to her mother. I spend most of the day with her, trying to cheer her up, but who can cheer someone up whose mother is dying? She’s the saddest I’ve ever seen her. Eventually I persuade her to go to lunch at The Bistro. We see Shana there, she’s been hiking all morning and is bubbly with happiness at seeing us and mountain energy. We both marvel at the amazing women we have working in the shop right now, these goddamn beacons of positivity and industriousness next to us, lumpen masses on the floor until we heave ourselves into clothes and trudge into work.

I leave Kate feeling maybe 5% better and go into work, where Maresa’s making macarons and Jacob’s been shipping out orders all day in the closed shop while simultaneously doing pre-production for his other job in the indie rock world. He has a few shows coming up in December. I work a little, then call my mother to go over our plans before the appointment tomorrow.

I’ve been thinking about things that might worry her about staying in my house for a bit, and I tell her I want to preemptively reassure her about them: that she’ll have space because we’ll clear out the downstairs big room that’s currently Jacob’s studio, that it will be warm enough because we’ll have space heaters (she never visits between November and April because she has free heating in her apartment and isn’t used to living in cold houses where you pay for every inch of warmth), that we’ll fix up the downstairs bathroom for her. All of these tasks are in my productivity app on my computer, divided into sublists under the master list MOM ILLNESS PLANS because we still don’t definitely definitely definitely know it’s cancer so what’s the use of jinxing it in one’s productivity app?

I lay it on thick. I’d called Sloan today and they told me (after I had to answer computerized prompts like “which type of cancer are you calling about?”) that their current waitlist in the Pancreatic Center is mid-late December. I wonder if her doctor could get her in sooner. I tell this to her optimistically, that I was surprised their waiting times weren’t longer. I don’t relay what the woman on the phone said to me, which was “Uh, if your mom has pancreatic cancer, you don’t want to wait. You should find her someplace else to go.”

I tell her that there is no one else in her life that can cook for her, and one cannot eat Whole Foods salad bar salads when one is recovering from surgery, chemo, and radiation.

I tell her that it’s her decision—that if the doctor says she needs surgery on Wednesday, Tuesday night I will fly out and move into her place for a month, or longer. Her apartment is small and I’ve never stayed there for more than a night, but we’ll do what we need to do. I tell her the important thing is that I see her soon, and can care for her.”

“I’ve been thinking a lot, too. I want to come to New York.

Every time you post on Facebook about a soup you’re making I think—‘if I lived in New York, I could be eating that soup.’”

I am crying by now, of course. I say, “Every time I make food I think—‘if my mom lived nearby, I could come over and have dinner with her.’”

We laugh and we go over plans and I ask her if she’s scared. She says only a little.

I have to get off the phone to go to a Planning Board meeting.

“Just one more thing, Gu.”

“Yeah.”

“This is going to be really hard on the cats.”

 

Tuesday, November 25th.

Diagnosis day.

Breakfast soup with Maresa and Kate at work, each of us glum but gamely having a nice morning. Maresa’s already been at work for two hours by the time I get there at 10 am, will be there a few hours after I leave at 10 pm. Thanksgiving pies.

It’s supposed to snow tomorrow so today is going to be the Thanksgiving craziness. By 11:30 we’ve already had four people try to come in, even though we don’t open until noon. Corporate and wholesale orders are pouring in, Jacob is working on them nonstop, making up invoices, processing payments, communicating with customers. We’re officially in the holiday chaos.

Lucy comes over with Henry. The car puts him to sleep, so she drives around with him a lot, mostly to visit her partner, still recovering in his house right above my house on our hilly street. He still isn’t allowed to hold Henry, she has to lay him next to him. She asks if she can wrap bars for a bit while Henry sleeps, says she’s going crazy in the house. She starts foiling Ginger Nibby Bars and life feels so perfect. Lucy’s back in the shop. I feel warm every time I look at her.

The appointment is for 3 PM my time. Harriet texts me at 3:02 and tells me to FaceTime her. She can’t figure out how to call me using FaceTime but if I call her it works fine.

There are two oncologists and the radiologist in the room plus my mom, Harriet, and Judy. The room looks dingy and cluttered and garishly lit and the chief oncologist, Mr. Best Pancreas Man in Chicago, turns out to be a red-faced slobby-looking man with a yarmulke who is amazed at this futuristic technology. I immediately decide that my mother shouldn’t continue to see someone who is awed by an iPhone. As he gives his prognosis he seems overly jaunty and I want to punch his fucking face.

It seems to me that when you get a diagnosis of cancer you should be in a beautifully-lit wood-paneled office, with a kindly doctor sitting behind a heavy desk handing you a folder of information printed on thick cream stock:

you. have. cancer.

I realize suddenly I’ve been in a massive rage since yesterday morning and don’t care to get out of it. I’ve been working on my rage my entire adult life, most intensely the past three years in therapy, and it’s calmed down so much. I haven’t thrown a knife or a pot or a vase or a plate or a glass in over a year. I have four boxes of broken glass in my garage, remnants of the years of rage. I figure someday when I’m cured of misanthropy and stomach-churning hatred at humanity I’ll make some sort of backsplash or mosaic with them. Every day I use the chef’s knife I once threw to the ground and the All-Clad 4-quart pot I threw at the wall and dented when I needed alone time and wasn’t able to have it.

Ferguson was happening. Again. After work Jacob and I puttered around the shop and listened to This American Life. One of the segments was about these people who make You Tube videos talking back to Border Patrol officers, exercising their right not to answer their questions or consent to their cars being searched. Really really good episode. It got me thinking all these ragey thoughts about how I can really really rilllly stick it to the pigs. Just for kicks. On an everyday level. With humor and maybe, you know, YouTube videos and stuff. I need to smash this society more quickly than with vegan organic fairtrade wellpaid chocolates. I read too much about Ferguson too early in the morning, I was all riled still. Also because my mother has cancer.

I fiddled around with a chocolate I was working on I made dinner we ate it at work why not. I resisted getting in Facebook fights with my main Facebook fight-pal, Maresa’s dad, about Ferguson. I just quietly deleted his comment and moved on. Mark brought in Thanksgiving food from Karma Road for all of us. The night went on. I didn’t want to go home go to bed go not to sleep. My mother has bad cancer. Stage three. Inoperable. Chemo and radiation will shrink it but they still don’t think they will be able to operate. The tumor the cancerous tumor is wrapped around an artery. It will be radiation every day for five weeks and chemo once a week for –the FaceTime cut out and I don’t know how long.

So you get off the phone and you start making other phone calls. I hate the phone I run my business through email but today I made or answered 26 phone calls.

I learned a word.

Unresectable.

as in: so much for surgery fixing everything. As in

“Patients with stage III pancreatic cancer have tumors that are technically unresectable because of local vessel impingement or invasion by tumor. These patients may benefit from palliation of biliary obstruction by endoscopic, surgical, or radiological means.”

This is a random Google search so I will choose to ignore the word “palliation” because it obviously doesn’t apply to her situation.

No spheres made today. Once someone becomes a pro at something the way it goes is usually that we just let them make them and they get real into them and they get better and better and they get obsessed with them and then suddenly the season for them is over. Adrienne’s that obsessed person this holiday season and she doesn’t work Tuesdays.

Oh, and Kate’s mom is unspeakably, horrifyingly ill.

She texts me from the hospital in Syracuse: “What do we do with the crushing sadness that is basic human existence?” It’s somehow comforting to have someone suffering so much, we can suffer together. She texts me a new Jeffrey Lewis song to listen to.

My mom’s flying out Monday. Appointment at Sloan Kettering Tuesday. Chemo near the end of the week most likely.

I have a million things to do. Change of address forms. Gathering paperwork to fax to the new doctors. Work stuff like wild. What I do is research animal shelters she can volunteer at up here. Text Than and Kate about the meaning of life. Pet the cats with Jacob, who uses his endless frequent flier miles to bump her flight up to first class. Than tells me his Upper West Side apartment is “an oasis we can use any time.” Maresa uses her real estate agent mother’s connections to research the best apartments.

I’ll see her face so soon.

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Next.

25 Responses to “Things I Did When I Didn’t Know If My Mother Had Cancer Or Not”

  1. Cheryl

    You don’t know me (I live on the other side of the world) but I’ve been reading your blog for years. My heart goes out to you Lagusta; to you, to your mum, Jacob, Kate, Maresa, and everyone <3 <3 <3

    Reply
  2. Randal Putnam

    My head and heart are swimming and no useful words are coming out. Tears though.

    I know a person who works at Sloan. I don’t know exactly what she does there, she doesn’t run the joint, but insiders can sometimes help. Let me know if you want me to reach out to her.

    We love you all very much.

    Reply
  3. Zoe P.

    I’m so sorry, Lagusta. It sounds like you’re doing an amazing job taking all kinds of care of her. She’s lucky to have you.

    Reply
  4. Lacey

    I don’t know what to say except that my heart breaks for you and know that Randy and I are here for you and your lovely mother for whatever you may need.

    Reply
  5. jess sconé

    Lagusta, sending you love and warmth. I lost my mom nearly a decade ago, in 2005, when she was 49 and I was 22, and all I can say is to keep giving and showing her your time and love. Keep that with you. That’s what matters.

    Reply
  6. Donna Oakes

    Your relationship with your mother is beautiful and magical. You are truly your mother’s daughter and having her come to live with you will be the best therapy in the world for both of you. I am in tears reading this because I can feel your sadness but also because I feel your deep love. My heart is with you. xo

    Reply
  7. Rachel

    Love from a long time reader in California. I’m sure there’s more like me who have appreciated your presence on the planet through the web and would like to send you what feeble comfort they can from their distant locales. Sending my hope for your mother.

    Reply
  8. MeShell

    All the love in the world being thrown in your general direction.
    Of course, I don’t know you or your mom, but I read your blog fairly regularly and both of my parents have had cancer in the last few years and I can relate to bits and pieces of this so vividly and I’m sorry. I can’t say anything really.

    I hope your time together is filled with love and laughter and hugs. And soup. <3

    Reply
    • lagusta

      Aww, thank you so much for this. Both parents—wow. I can’t even imagine.

      Reply
  9. veritas

    this is crushing and beautiful. this is why cancer is never, ever just about those of us getting the diagnosis, and it’s not about hospitals, or wood-lined rooms, or Chemotherapy and Radiation and other words that need capitalisation. it’s about how the hell you just keep going after you get those words, and how tiny and small the word cancer should be. this is ‘cancer’. not a cute sad photo of a person in hospital robes doing a brave courageous inspirational thumbs up to make everyone who doesn’t have cancer feel better. it’s working out what to wear to the oncology appointments.

    i wish you, and your family, the best. whatever the hell that means. but yeah. and remember, statistics are meaningless and speak only to a ‘normal’ that doesn’t exist. Pancreatic is a terrifying GI cancer, but palliation can be for years. i say this to comfort myself, because my care is palliative, but no one thinks i’m dying any time soon.

    Reply
  10. lagusta

    Thank you–how great to hear from someone also struggling with this horribleness. Sending all my best to you.

    Reply

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