This is part five of The Cancer Diaries.
It’s the coldest February in one hundred years in my town. They keep records up on the mountain.
I haven’t had an anger rager in over a month. I am breathing. I am stronger every day in some days and weaker in others, scared in some ways and powerful in others. Everything at once all the time.
We are humans on this planet
in this time and place.
I don’t know why I put that link there. I guess maybe someone is reading this blog because they searched “pancreatic cancer” or something and wonders why I’m so obsessed with Christmas and Valentine’s. The little shop. We’re always unprepared for Valentine’s because it comes so quick after the December holidays, which we spend months preparing for, then we forget all about Valentine’s until after our winter break. I worked in the shop the entire winter break and it didn’t really help us prepare for Valentine’s.
Like the December holidays, Valentine’s is a record-breaker for us in all ways. Money, customers served, boxes shipped. It’s strange. We’re growing steadily. We get better at our jobs and make a better product and so people buy more of it every year. Our ten-year commitment to not advertising stands firm.
This is simultaneously the best time in history to taste a Lagusta’s Luscious chocolate and, most likely, maybe, the worst time compared with all that is to come in the future, how good we’ll be at our jobs in a year or ten years. Maybe.
This is also how I think about cancer: this is literally the best time in history to get cancer. I mean, also the worst because of all the chemicals and whatnot that are causing cancer, but don’t think about that. Also don’t think about, like, healing herbs that maybe could cure cancer that have been lost to history because of a patriarchal allopathic medicine hierarchy. Just think about like western medicine and stuff. It’s the best time in history to get cancer. But the worst time in the history of the future. Hopefully. Who knows. Why do I think about this all the time? Have I written about this before? It’s too painful to go back and see. Who cares.
I am standing here, on this earth at this exact period in time. Why? How can I make the most of the time I have here, with these tools, for this tiny second I’m given on this planet?
Sickness makes you think of the big things, what a fucking cliché.
I am happy, as always, for the avalanche of work. I am happy, somewhat, in the diminished way of these days, in general. I am not kicking walls. I am making food for my family, they are coming to the shop to visit, my mom hanging out on the couch, my brother putting chocolates into cups. I can retreat into business busyness—late nights, early mornings, a calm brain washed free of anything but the clean pleasure of exhausting work.
I’m not sure my family exactly understands the difference for me between, say, the second and third weeks of February. To me they are the difference between living inside a washing machine and living on the earth. One with no air to breathe, only constant motion. The other with the regular cycles a human is used to: sleep at night, regular meals during the day, adequate time to pull one’s jeans, leggings, and underwear down before peeing, instead of, as I do one day, practically pissing all over my underwear because my exhaustion was such that I forgot I was wearing three layers, not two.
My mother and brother move in and out of the shop not seeming to notice the chaos, asking if I want to come over to watch TV, taking Tuesday éclairs and Friday pastry specials from the display case, asking me out to dinner, my brother wants me to come to bars at night with him. “Something to do.” His boredom is a constant pressure in my life. I am a problem-solver and someone who has never been bored, so I think this is an easy problem to solve. In time I see it’s something else. Insanity might be one word for it and that’s not p.c. to say and I could fucking care less. He doesn’t do anything to relieve the boredom like look for a job or friends or…it’s hard for him. All of it. His bouts of rage and cruelty make my compassion for his struggles come and go.
The busiest week of my year begins with a foot of snow.
I get reports that in my sleep I repeat the words “sorrow” and “running out of rosemary caramels” continuously.
In the span of three days, the three days before Valentine’s, my brother has a court date for the Bad Thing, I have intense mouth surgery, my mother has chemo, and Jacob and Kate have to steer the ship of the shop while I’m handling all the non-shop crises. We plow through one thing after another.
My surgery for an infected root canal is postponed because of snow and moved to three days before Valentine’s. The next day I need to drive my mother to chemo and worry that I’ll need to take painkillers that will mean I can’t drive. I take a few aspirin, strap a bag of frozen corn to my face, and go immediately back to work after the surgery. I was on nitrous the whole time and am left with a mind freed from worry the rest of the day, just dull aches and hands that don’t move as fast as I want. I still stay at work until midnight, and pay the price the next day at 7 am when I pick up my mother to take her to chemo and my mouth is thudding like someone has been punching it all night long. But I don’t take the Vicodin, am proud of my toughness. My dentist packed the space where the root used to be with specially-ordered dead human bodies, instead of the cow collagen he typically uses, knowing my proclivities. Small thoughtfulnesses, you know?
When my mother gets into the car she immediately says “oh, I didn’t bring my sunglasses.” It’s snow-bright outside, her eyes are sensitive. “I’ll get them for you.” “No, it’s fine.” “Really?” I know I should get them, but I want her to ask for something she wants. I want her to stand up for her needs. I want her to let me do something. I want her to appreciate something I’m doing because she specifically asked me to do it. She says it doesn’t matter and spends the first 45 minutes of the drive holding her hands over her eyes and crying sun-tears. The car is too cold. The car is too warm. Oh why didn’t she bring her sunglasses. She doesn’t want to wear mine. The visor doesn’t help. She’s sliding down inside herself, angry at physical discomfort, at not being able to control her life.
The doctor says she’s responding well to chemo, she looks good. This is a relative term. Her weight has stabilized at 99 lbs, a weight she hasn’t been since she was twelve. When she asks if she’s eating and drinking water I don’t do my typical thing of intervening and saying she isn’t. I just let her lie to the doctor with the nervous tic she gets when she’s lying and wants to be caught, wants to be fawned over because she’s being so stoic, such a great martyr, by taking such bad care of herself.
The doctor notes that she’s eating well.
I feel so tired at chemo I want to cry. I try to plow through emails on my laptop, but my mind is soup. I move two chairs together to make a bed and sleep for a beautiful fifteen minutes, when my brother calls me to tell me that he’s not going to prison, just needs to do community service, not get in trouble for a year, and pay a fine. My mother has been so nervous all morning about his hearing that she practically cries. I’m nervous but not particularly concerned. There is a limit to the number of things I can worry about.
What’s even the point of saying it? I’m so tired. I have stresses besides cancer and work that I don’t talk about in these journals. I mean obviously. I have The Thing It’s Been Decided I Shouldn’t Discuss On The Internet. And today it’s stressing me out. Also: cancer.
Also: it’s Valentine’s Day. Busiest day of the shop’s life. We’re handling it just fine. The display case never gets low on pieces, and the shelves are picked bare but that’s fine. It’ll be quiet the next two weeks and we can restock at our leisure.
We have a toast at the end of the day, champagne and seltzer and my mother and brother come by for it and to have cupcakes. My mom takes a photo of us. By the end of the day I feel fine, home by 8 PM for the first time in ages.
The crushing depression that comes after a hugely busy work time is unsurprising but it knocks me sideways with surprise, even still. This time it hits me so hard, so fast. I spend the day in bed writing in my journal and crying. Mostly it’s The Thing It’s Been Decided I Shouldn’t Discuss On The Internet, but, you know, the other stuff too. I’m wrecked with sorrow for a good 8 hours. It happens. It’s OK.
Here’s what I do when I’m not crying. I think about this thing I read somewhere:
thoughts are feathers.
All thoughts weigh exactly the same. Cancer/monogamy/work stress/revolution/hating cops—some of these thoughts occupy more or less space in your brain but they all weigh exactly the same: nothing. Or, let’s say: the weight of a feather. So you can do this thing where you breathe in a good breath and with your out-breath you push a feather away. Whatever feather is sitting there at the time. Over and over until there aren’t any feathers and you’re actually alive for just one one millionth of one second without thinking any of your dumb idiotic crazy-brain thoughts.
Jacob and my brother and my mom and I go to NYC for her first round of scans since starting chemo.
We are all nervous. I wake up too early and straighten my hair with a hair iron thing Maresa gave me when I was Mary Tyler Moore for Halloween. Why not.
Jacob drives and I have a moment of NYC-driving triumph when I swear that 63rd street goes west because “evens east // odds west” and he doesn’t believe in the absolute power of my rhyme and my brother says in his harsh wild way that what does it matter it’s just that we have to go around a block and I get all “oh ho ho! Lo and behold, my friend. This ‘block’ you speak of, it will take us 20 minutes to get around, easy, I mean, don’t even get me started on the Queensboro two blocks away–hoooo boy someone shoulda listened to ol’ Lagusta here.” and it does and I dine out on this small traffic triumph the rest of the day, constantly poking Jacob in the ribs and reminding him that though I may not have grown up in the Chelsea Hotel I still know something about east side traffic so THERE.
I have so few car-related skills. “Evens east” is about all I have, so I gotta hold close to it.
But still. I’m trying so fucking hard for lightness & normalcy, and I’m failing all over the place. The NYC cancer hospitals generally are hell. We wait for so long. I try to do work but end up just writing holier-than-thou mega-indulgent nonsense:
i mean i know we’re sitting in yet another hospital waiting room but god the people i’m surrounded with are just fucking black clouds and i feel always like i’m just pulling this whole goddamn ship along by my teeth and sometimes i want to scream at them that moping and stress will kill them all
they’re sitting there reading people magazine and i’m getting angrier and angrier and angrier, doing boring planning board readings, planning meals i can make for all of them, could anyone lift a damn finger but me, could anyone work on the mental attitude of this “family” but me.
the holistic doctor we went to today talked about stress, and all these little things she could be doing to eat better, sleep better, deal with stress better, and it got me thinking that i won’t be a sad and depressed person. i won’t let it happen to me, won’t sink into the hopelessness i’m surrounded with. i’m in manhattan, the city i love more than any city, and i want to run out of here, feel my legs working, feel the beating heart of a city that’s chosen to accomplish things, push things, have a vision, be creative and weird and human, not just a lump reading people magazine on a couch. i mean, i’m not talking about my mom, of course. only a little—and she has an excuse. jesus.
Jacob and I put my family in an Uber and walk to the restaurant after the scan, me pumping the sidewalk hard, ranting to him about their heaviness, how I can’t stand it. I squeeze his hand and make him swear we’ll never become so leaden. He swears.
Dinner. Candle Cafe. My mom had never been. I’ve always sort of hated it in a visceral way. It epitomizes the stupidity of the mainstream vegan world, the self-congratulatory “fine dining” smallness. The menu sports an “Indian Burrito” for $16 and eggplant napoleon for $20 that’s literally a recipe from the culinary school me & half the people working at Candle went to. Your standard tofu-dressing caesar salad. Guac and chips for fuck’s sake. I hate that kind of shit so much. A real raspberry kind of coulis place, you know? Tuiles and raspberry coulis. Dumbed-down white people shit food. But it was nearby.
I show her the poem I showed you before. I got it all framed up and everything. She was surprised, pleased, slightly embarrassed.
We go to Costco on the way home because organic vegan sugar is half the price at Costco than through my natural foods distributor so every time I go to NYC I have to buy $300 of sugar to keep my business going. I try to get my brother and mother interested in Costco, but my mother is tired to the point of crying and the crowds are not good for my brother. I tell them all about how we researched Costco so much, how well their employees are paid, benefits, vacations, blah blah.
Basically I am my worst self-righteous lecturey morally superior asshole uptight self all day and I don’t know how anyone puts up with me.
My mother and I are insane with nervousness to hear the results of the scan. The day drags on and it’s still not in. Finally they call:
I am fucking insane with excitement.
I write all kinds of shit all over social media
One thing of the many things about my mother suddenly (and not so suddenly every day) living a few blocks from me after 18 years of being separated by half a country is that she keeps giving me all this stuff. All of my report cards, my grandfather’s contracts for the books he wrote, programs for all the plays my grandmother was in, these jeans I decorated in junior high school with “vegetarian” written on the ass in puffy paint I need to show you. My family line ends with me most likely so I guess someone’s got to organize it all. I found this poem tucked in a letter she wrote to her mother & I hope you’re ready to cry. I showed it to her when we went out to dinner after her latest round of scans yesterday. We were all pretty jittery after the scans, I thought it would be a good conversation changer. This morning we were all pretty jittery. This afternoon we were all pretty jittery. And then they called and you guys the goddamn motherfucking tumor shrank. You guys I’m sitting here late at night making #socialistslidingscalesoup for you and I’m reading this poem over and over and I can’t stop crying but for the first time in exactly 101 days I’m crying not from abject terror and fear at what the future could hold but from excitement at the damn miracle of goddamn life and the tumor shrank and spring will come soon and I’m so excited I’m using stupid non-inclusive language like you guys. THE TUMOR SHRANK YOU GUYS.
One thing about dealing with humungous scary life things is you start to see how little people’s fucking idiotic little gripes about fucking chocolates matter.
One thing about getting good news from the doctor about my mother is that I take a tiny breath away from her and think about other things. Like recent stupid emails from customers.
Valentine’s means more business than usual, often from customers who aren’t our regular customers. This leads to some ridiculousness, and I get a handful of irksome emails in the span of a week that I will now mock, because #selfcare.
As usual, I need to make a standard disclaimer that our customers are amazing and I love them and I’m 100% positive they’re better than customers of any other business in the world. The trick is keeping those customers and gently dumping the customers you don’t want.
After we had a bad employee, I learned that you can’t keep bad energy around your workplace. You have to find some gentle way to let them know this isn’t the workplace for them. Same with customers. Unfortunately, annoying customers are often annoying and often don’t take the hint. I’ve been trying to dump a particularly annoying customer for about a year now. Every time we make a chocolate with a flavor sort of like what she likes, she emails me to ask me to add more of a very specific flavor she likes into it. She’s asked me to change so many chocolate flavors that I now have a standard email I copy and paste in response to her. She also consistently asks for special shipping favors, i.e. for us to ship items that aren’t on our website (typically because they’re not shippable due to perishability or breakability or us not making enough of them to ship) and often checks in about “what new items aren’t on the website I could order” and if we’re going to be making any other flavors of current lines of barks, barks, drinking chocolate mixes, etc. She’s a fucking nightmare and one of those super polite ones who will never understand what a strain she is on the planet and on people with brains who are trying to run businesses. I have a huge tangle with her this Valentine’s season and am proud of myself for consistently writing her firm but polite emails whose message is always no, even when to a better customer I’d say yes. I am trying to dump her, and I haven’t heard from her in three weeks so maybe it succeeded.
A longtime customer emails me this:
Just wondering why there wasn’t a card or note with the Valentine’s message I wrote to my hubby? I think I’ve ordered from you guys every year for gosh, I don’t even know how many years, and I remember handwritten notes (unless that was like 7 or more years ago)…so just curious to know what happened?
She forgot to write the note. It wasn’t a nasty email or anything, but why wouldn’t you check your order receipt, which lists the note, to see if you actually wrote it? Why do customers always assume we’re in the wrong?
We get negative Square feedback (basically just an email to us that no one else can see), very very rare for us:
It would be great if the staff were a little friendlier, especially since it’s a shop with premium products. I always feel like I’m an annoyance or imposing while browsing. Also, rather than offering me a bag for my loose chocolates, just put them in a bag. And please automatically put all my items into a bag–whether loose chocolates or prepackaged goods. It just feels more professional. Maybe you’re trying to save money or be eco-friendly, but I think it would be a much posher and less disconcerting experience if things were simply put into a beautiful package without asking. When I buy chocolates and sweets in Japan they come in such lovely packages. Because you have a delicious, lovingly crafted and fairly expensive chocolate product, I would love to see it packaged with the same thoughts in mind (just do a google images search for “japanese packaging”). For some North American inspiration, check out one of my favorite chocolatiers, based in Vancouver, BC: http://beta5.myshopify.com/ I’m sure you can figure out something cost-effective and memorable. Also–the jars of hazelnut/chocolate spread on your shelf display seem to have been affected by the cold and look discolored. I was going to buy some, but sadly none were pretty enough for a gift. Thanks for taking my comments into consideration.
Three years ago this email would have made me cry, but I’m 36 goddamn years old and have run my own business for twelve years so I just sigh and move on.
In a morning meeting, I walk the gentle line of deconstructing this email to help our staff understand where we could be misperceived by customers while also talking about how this is not the customer for us, and that’s ok. Our shop philosophy is not to pander, and she wants pandering. I hate it in a shop when people are constantly asking me if I need anything or following me around and commenting on what I’m looking at, so we don’t do that. Jacob writes an excellent response:
Hello! Thank you for your comments, we appreciate you sending us your thoughts. I’m sorry you felt like our staff wasn’t attentive to you, we try and maintain a distance while our customers browse to give them space to discover our shop, we’re always there and available for questions. All of our employees are also chocolatiers so they they keep busy making chocolates while customers browse. Regarding bags, we’ve found that 90 percent of our customers prefer not to have a bag. It’s not a cost or environmental issue on our end (we use recycled and recyclable materials for our bags) but a predominant preference by our customers to forgo a bag. This also applies to individual chocolates where many of our customers wish to enjoy our chocolates at that moment and don’t need them packaged to go, which is why we ask. We also love Japanese styled packaging (Minamoto Kitchoan in Manhattan is a favorite!) and Beta5 Chocolates, but sadly that level of additional packaging would require an increase in prices and we’re not willing to make that sacrifice. We try and find the right balance for everyone so people can afford to enjoy our chocolates but we’re always looking at, and investing in, new packaging (our new chocolate bar packaging is a result of that). Finally, the hazelnut spread is an unpreserved natural product with a disclaimer on the front of the package about how the oil separates from the solid giving it a white streaky look. As it’s an all natural product we don’t add the chemicals necessary to avoid that but the oil separating does not affect the taste or life of the product at all. I hope I have addressed your concerns and wish to see you again in our shop in the future! Best, Jacob
And, then we get this:
Hello, I understand this time of year is very busy for you but your website disclaimed that if we wanted delivery by Valentine’s Day, to choose Priority Express Mail. I requested by Thursday just in case and while I know that is very short notice I would have accepted a couple of days late. I paid $20 and change for Express Mail for these gifts for other people. If I knew it would take so long for the shipment to even be mailed out I would have chose a different mailing address as I am leaving this one this week. I used to live in New Paltz and rave about your shop all of the time and this is the first time I ordered by mail and am unfortunately disappointed. Is there any type of status I can get on my order? Maybe a refund for the $20 express shipping that held the disclaimer of “by Valentine’s Day”. It’s Tuesday and the package was not in my mail today. I am leaving in 2 days and would be sorely upset if I cannot give these gifts before I leave this address. Thank you.
This person wrote a note when placing their order saying to ship it February 28th, so we’re holding onto it. I email them gently to tell them this and ship their package the same day and I never get a response from them. An honest mistake, but again—the assumption that 1) we’re always in the wrong and 2) one mistake of ours means that they’ve lost faith in our business forever. Fuuuuuuuck that.
And then we get this:
[a friend] mentioned your name and website, saying that perhaps I could ask you some questions about all things chocolate! She told me you’ve gone through/are going through growing pains and you’d be a great person to talk with. My husband and I own [a small company making non-vegan non-organic non-fair-trade chocolates]. We are looking at scaling up, possibly moving to co-packing or building our own space (instead of renting in a commercial kitchen), and learning how to ship across the country, etc etc etc. We are just in [nearby], so perhaps we can make the trek up to see you one day?
From my perspective I want to write back—well, why the fuck would I even write back? I don’t get this thing where people who want a business like your business write to you for advice on how to run your (& their) business. I literally never did this. I am an anarchist, yes, but it’s not just solo politiks & a non-collectivist spirit & overdosing on Ayn Rand in high school that prevented me, it was just…ick? I dunno. I knew nothing about starting a business and now I know a lil and does advice even help? I mean, we don’t use copackers or anything. But I get it: it’s nice to hear from people who’ve been there. But you make a product completely anti to everything I stand for. I mean, you sound nice & all but I hope your business fails. For reals.
But obvi I can’t and don’t and won’t ever write anything like that. I put the delicate question of how to respond to inquiries like this on Facebook and Carol Adams suggests I gently tell them I can’t in good conscious give business advice to a non-vegan business. Even though I sound strong & high & mighty here I’m really not and I know this would sound terribly snobby to a nonvegan, so I just take the loser way out & tell them I don’t think I could really be of much help blah blah. They will just think I’m a bitch and will never understand why my politics prevented me from helping them. It’s a failure on my end but who cares.
Here’s what gets me annoyed about our customers, and I know I’ve whined about this before:
We’re a better company than people are used to seeing. We’re more caring, more dedicated, more politically aware and active, more open to input, less concerned with profit, blah blah. This philosophy has drawn excellent customers to us, but they also expect more of us.
This is good. Yesterday I put a “Spring Solstice Bark” online and three people wrote to tell me it should be “Spring Equinox” and two of them mentioned kindly that “Spring Solstice Bark” does sound more alliterative, which is nice. I didn’t mind that, I liked that. It made me laugh and realize what a bad pagan I am and I changed it and I was appreciative.
What I mind are people for whom this tips over into insanity. Like once when a customer saw a bottle of bleach underneath our sink and expressed shock that we’d have such a terrible product in our hippie-ass kitchen. You go into half the fucking restaurants in the world and you see horrors which will make your stomach turn in the kitchen, but most people look the other way because they want their General Tso’s Tofu and they don’t expect any better, but you come to my kitchen and say that kind of bullshit? The health department requires you to have bleach to sanitize your dishes. If you don’t have a bottle of bleach on hand you fail your inspection. Idiots.
Working harder means the bar is continually raised, and I know I have to accept this.
On the other hand, we continually get emails like this:
hey therenot sure if my order shipped yet..order # xxxif not, can i please add on one of the delicious looking PB caramel nougat bars?Hello xxx,So sorry your order hasn’t gone out yet—we’ve had a crazy week! I’ll definitely add on the peanut butter bar—please have it as a bonus for your patience! Maresa, who makes the macarons, isn’t around tomorrow to make yours, so is it OK if your order goes out Tuesday (we’re closed Mondays)? Sorry again for the delay!Best,Lagusta
Omg! I totally understand the delay, it looks like you have amazing things going on over there! I SO appreciate you adding on the bar and yes it can wait. Thank you so much! I had written to you about the great customer service I got during the Xmas rush and now you’ve done it again. I need to leave a yelp or something for you because you’re awesome! My partner and I are from NY and used to visit your shop and we loved it’s coziness so much. People and businesses like yours are part of what make us really miss NY, thank you!
So why am I even complaining. People are good. (Except me: I forgot to print out her order and it languished for a ridiculous six days.)
I wear an all-time personal record: 20 items of clothing.
legwarmers on arms because of short sleeve jacket
I go to my mother’s apartment to watch the Oscars. I hate award shows. Long form TV makes me itchy and anxious. I bring receipts to enter into my accounting program on my laptop.
The tumor has shrunk the tumor has shrunk the tumor has shrunk but still she’s so tired, frazzled, weak. Angry at commercials she doesn’t like. Angry at things that seem so insignificant that it makes my brother angry at her. I’m confused about why neither of them seem to care about what matters in their lives. My mother, who I always thought of as a great intellectual who lives completely in her head, turns out to know everything about every celebrity and seems confused and slightly angry at my disinterest.
The more I’m around her, the more I realize she devotes a large amount of her day to reading about celebrities online and watching news about celebrities on television.
This is a somewhat huge blow.
My mother is a kind and caring and wonderful person, but she’s not a particularly good mother. Instead, I figure, I have a friend I can discuss books, poetry, politics, philosophy with. When the knowledge slowly seeps into me that she can also, handily, despite taking no interest in clothes personally, discuss in-depth what actresses wore last year to the Oscars versus what they wore this year, I feel somewhat queasy. Many of the actresses dresses seem to make her personally upset, and this light misogyny makes me upset.
This is not the mother I know.
I love my mother, but I sometimes have trouble respecting her life choices. Unlike her financial aid-challenged daughter, my mother has never gone to a public school. Elite high school and then Bryn Mawr, then Northwestern for her masters. The utilization of her carefully educated brain was the area where I respected her most of all.
But now her brain is all about the news, pop culture, the weather, celebrities. When did this happen, where was I, why didn’t I notice? Worse, she judges me for not knowing more about these topics, seems quizzical and irked when I tell her they don’t affect me and I’d rather spend my time attempting to make positive change where I can (I sound like a fucking asshole / I am a fucking asshole). When we do talk about books, she can be equally judgmental, in a triumphant sort of way, when I haven’t read any Somerset Maugham or much Brontë. Does she secretly look down on me because I work with my hands, not with words? Does she see how many words my job requires? That I wash dishes but also run a company that employs a dozen people? I wonder.
I resent my mother intensely for a few days after the Oscars. The tiny window of good news about the tumor allows me to breathe a little bit, and inside the breath I realize I’ve been choking for months. My life has become so small and dim, laced with worry and obligation. I fully indulge in resentment from this day, Sunday, until the following Wednesday. In retrospect I’m glad I did.
I’m so annoyed about her celebrity obsession that I tell her my take on celebrities: their lives are hell. Not just the ultra-famous, even the small-famous, the ones in Jacob’s circle, for example. Society hates a famous person, and uses every opportunity to tear them down. They get money, hopefully, in exchange, but what a dumb life.
She tells me that that might be true, but that she regrets not becoming a famous journalist. I ask her what fame would have gotten her—more satisfaction out of life, more money, more…fame? She’s tired of the conversation. Or I’m being annoying. “Oh…I don’t know. It’s just…a thing I thought could happen, I guess.”
My notes for today’s entry:
THAT TIME I TURNED MY PHONE OFF FOR AN HOUR
Write about moms relationship to tap water, warm water, not taking the doctors recommendations, saying on Facebook that is going into remission / that’s not what it means.
That about covers it. I’m upset because she’s supposed to be drinking warm water, and refuses. Whatever.
I get so frustrated by my brother and mother interrupting my magic Monday of head-resetting solitude work that I decide I’m allowed to turn my phone off for an hour. When I turn it back on I have five text messages from my mother, two from my brother, and a phone message from my mother’s best friend Judy saying she heard I wasn’t answering my mother’s texts. I assume there’s been a crisis but I am only needed to print out files for my mother and my brother wants to come by and steal a macaron. I am close to a rager but do some square breathing and run around the block and I’m OK.
Unrelated to anything, but since this is also a little scrapbook of my own, a little bit of funny press comes out about me (& my outfits!). So odd, doing interviews and things once in a while. Makes me think more about the fame thing, how in my small little world it makes me feel so awkward but I never say no. Why not?
Chemo. We’re both a little nervous about meeting with her doctor to go over the scans. I’m excited-nervous. We know the tumor shrunk, she’s just going to go over the next phase of treatment, what could go wrong? I know the tumor won’t have shrunk enough for surgery, but I still hope for it. “Surgical resection offers the only hope of cure” plays over and over in my mind.
She weighs 99 lbs, is anemic and low in potassium, blood pressure slightly low, dizziness when standing, lightheadedness often, exhaustion and weakness constant. None of this is due to veganism, none is due to cancer, all is due to chemo. The doctor kindly reassures her of this. God being vegan is annoying sometimes, having to always win imaginary arguments with everyone all the time.
The doctor says how well she’s doing, how little side effects she has compared with most patients. I hope she’ll say that the chemo is doing such a great job that she can take a week off from it, let her body rest a little.
I smile at the doctor expectantly.
She says that the location of the tumor means, as she suspected, that it will most likely never be resectable. It hasn’t loosened its grip on the two blood vessels it’s been clinging to for months or most likely years, and the chances of it doing so, which would facilitate surgery, is “in the miracle range.”
She suggests another 4-6 rounds of chemo then another scan, and if it’s still shrinking maybe throwing some radiation at it, seeing what happens then, maybe some more chemo, maybe some more radiation—rinse and repeat ad nauseum.
I ask about the long term prognosis, and my mother says she doesn’t want to know. The doctor says that each case is so different, it’s hard to predict. The internet tells me that average life expectancy for locally advanced unresectable pancreatic cancer is anywhere from four to twelve months.
There’s no reason she should be average, she never has been before.
The doctor says that it’s almost certain she will be having chemo or radiation from now on.
As in: “forever.”
As in—we don’t know what to do so we’ll throw this poison at you until you fall apart from it.
While waiting for the chemo, I take photos of her with the lamb bag Maresa gave her and post them on social media, to much acclaim from my lovely community.
Gradually the heaviness of the news is sinking in and I become quiet. My mother maintains that it’s still good news—the tumor has shrunk! She asks me what I think, if I think it was good news. I tell her I wish the news was better. She says what she’s most concerned with is that the news doesn’t upset me. I tell her what I’m most concerned with is that she has cancer, which can be upsetting. We cautiously talk about big things for a minute.
“I guess…we’ll just keep doing treatment and seeing how you feel, ok?”
“I guess that’s all we can do, yeah. So far I feel fine. Well, not fine. Fine enough, though. Far from not fine.”
“I want you to know that you’re in control of this—no matter what the doctors say, if you get tired of treatments, you don’t have to do them, you know?”
“I’m far from feeling that way.”
“I know. But still.”
“It’s a good thing to remember.”
“Is there anything…you want to do?” I look at her carefully, worried I’m talking too much about the big things.
“Like jump out of a plane? No. I don’t want to travel the world or any of that stuff. I just want to spend time with you and your brother.”
“I want to spend time with you.”
I go back to my work, and she goes back to her magazine and we chitchat while I enter receipts into my accounting program and she reads an article in The New Yorker about serial commas. “I bet everyone is skipping this article. Not me. I have a lot of thoughts about the serial comma.” We talk about how she was trained to write in the AP style, and how TNY has its own style with all its weird dashes and serial commas, and how it drives her crazy but it’s so particular to The New Yorker that it’s still endearing.
Stupidly, uselessly, I make a recurring event in my calendar on my computer: “Walk With Mom.” 10:30 every other day with no end date, beginning March 1st. I am a person who has to be reminded to take a walk with her sick mother. I feel ashamed and sick.
I decide it doesn’t fucking matter what temperature the water she’s drinking is. Whether she’s eating junk food or not. Who cares. I vow to go on walks with her, watch stupid TV with her at night, not say no to her, not escape into the safe and calming world of work so much.
After chemo we go for a late lunch in New Paltz with my brother, to discuss the news. To tell him his mother will be having chemo for the rest of her life. I become very angry at the restaurant. At the restaurant. Not at chemo or whatever. I fucking hate the restaurant we decide to go to. Immediately after our lunch I post a stupid review on the Hudson Valley Vegans Facebook page:
I’ve only been to Main Course (in NP) twice and both times I became inexplicably filled with rage at their stupidity re: veganness, their inability to care about listing things as vegan, the fact that they seem to have good (nonvegan) food but utterly mediocre (very pricey) vegan stuff, and, I don’t know, I just get real mad there.
When I complained that my $12 “tofu hot pot” (i.e. miso-tofu breakfast soup) was advertised with wonton noodles (first of all, are they wontons or noodles? i guess i’ll never know) but got none, the chef casually told me they weren’t vegan (I ordered the dish because it was the only thing vegan except for HUMMUS! so he gave me more steamed carrots. I might or might not have yelled about how no one on earth wants STEAMED CARROTS instead of WONTONS. if anyone is friends with bruce, the owner, pls speak truth to power / knock some sense into him.
thank you for letting me vent.
(A friend later posts that the next day, the specials menu had clearly-labeled vegan items. Stupid rage. I hate how useful you are.)
It’s interesting, my brother seeing me angry. I am almost never angry around him, because I know anger is incredibly triggering to someone who grew up with a violent angry person in a position of power over them. He becomes quiet, not angry himself. We know the rules: there is only room for one angry person. The other people must cater to the angry person. The angry person has the power. After lunch I sit in my car by a huge slush pile and cry. Kate asks me where I am and she comes and sits with me.
On the drive home I had asked if she ever wanted siblings. I told her when I was going through boxes to put into the family archive I’m making I found both her parents wallets and both were filled with photos of her. Her father died when she was in her 30s, her mother when she was in her 50s, and they both carried around photos of her as a baby, a toddler, a child, a teenager, her high school graduation and college graduation photos.
She tells me she did, and her parents desperately wanted more children, but her mother couldn’t have them and they tried adopting for years, but it was the 50s and Jews could only adopt Jewish children and no one was giving Jewish children up for adoption so soon after the Holocaust (or, really, ever). So they were lonely and doted on her. My mother said every Saturday her mother would take her to Marshall Field’s to go shopping and have lunch in the Walnut Room. “It was what you did, then.” She told me at the parties her parents threw she was trotted out, all the adults would give her the cherries from their Manhattans, she never had a bedtime.
The day before is my birthday. My mother seems slightly distanced from the day, is so worried about getting to the restaurant for the little dinner I’ve planned with a few friends. It’s a block from the shop, but my brother drives her there and back, where we have a junk-food ice cream sundae bar party beforehand (shop birthday party! it’s become a tradition that on my birthday and the shop birthday we eat as much disgusting sketchily-vegan sugar junk as possible, and this year everyone outdoes themselves.) and cake afterward (friend birthday party!). She’s so much more cold sensitive than ever before, she can’t do the walk.
The next day I come over for our walk. We walk two blocks and she’s wiped out for the next few hours. She’s angry at her weakness, the way she gets in and out of a car “like an old lady.” This manifests itself primarily as anger at small things not helping her out—her seat belt being too difficult to snap in, her glove fallen out of reach, her phone beeping mysteriously. Small annoyances snap her into an impatient and ready anger that I’ve never seen before.
She tells me that on their drive to the hospital for her chemo disconnect, on my birthday when I was having fun in NYC, my brother’s phone GPS let him down again and they took an alternate route to the hospital that made him so angry he didn’t stop yelling the entire way. She tells me this with some weird pride, a sort of victimhood pride I recognize from childhood: see what I went through for you, so you could have a good day?
Coming in Part Six: my brother gets a job! He and I bond! My mother gets very tired. I look forward to spring. Jacob goes to Australia. Kate writes a new zine. Maresa invents vegan meringue. The shop keeps marching on.