living underground in the real world

AND THEN IT WAS SPRING

And everything was better.

This is the sixth installment of The Cancer Diaries. Read from the start, if you’re so inclined.

I like writing these monthlyish journals. I doubt many people are reading them, but they’re useful to me. When my brother and mother find them I’ll be so so so so so fuuuuuuuuuucked, but for now I’ll tell my truth as if no one’s reading. This one is pretty short. Not much to report. I leave so much of my life out of these, please don’t think it’s all cancer all the time?

This month I had Easter, so most of my energy went to that. And:

March 8.

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Soup starts with kombu when you’re not here I miss you // there are things I know how to do and things I don’t and I’m staring down at what might be the worst year of my best life so far and I’m learning. Sickness has a hella learning curve 〰 as I’m typing this my mom calls to ask me a computer question, says she feels “not that nauseated so that’s something?” 〰 Soup starts with kombu because you’ve gotta have good bones bones is a metaphor isn’t everything. I’m the empty pot I’ll figure it out you need a recipe at first then less and less

March 9.

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It is 50 degrees out and I am sunny for everything.

Pulling up to my mother’s apartment it is sunny and beautiful and I feel hopeful. Full of power, running around, projects and chores, energy in my bones. Planning Board meeting tonight then Jacob comes home from a tour in Australia.

Her apartment stinks like cat shit and my defrosting brain comes up with a genius idea: get someone to clean my mom’s apartment. I talk to her about it, and decide I’ll ask her three closest friends to pitch in. She’s OK with it. I send them emails discussing the plan: if they can pitch in $5 or $10 a week, she won’t need to think about housecleaning. They can send a check, but to make it easier, they can call me with their credit card numbers and I’ll automatically charge them every week and I’ll pay the cleaners.

And

.

.

.

just like that – – –

I’m mired in a ridiculous drama that drags out for weeks.

All of my mother’s friends have more money than she does, in varying degrees. Some of them have a lot of money. She has, no money. A full time job and social security, but no savings, no investments, nothing.

I try not to think about this part.

Her friends, whom she’s done things for for years, brought them food when sick, listened to them whine away for hours on the phone when she has a full time job, talked them down from nervous breakdowns and psychotic breaks. Her friends. She talks to each of them five or six times a day, no exaggeration. They email me periodically to see how she’s doing, but they don’t offer any assistance.

I send them an email and they write back with advice about what I should do, who to hire, how to do it. I am polite to the emails, though I am 37 years old and run a business and they are retired or constantly getting fired and never need to make phone calls to arrange anything because they are generally incompetent and would ask their doormen or something if a phone call needed to be made. Who knows how they function. I write back to the emails and they call my mother and say I’m doing this wrong (“this” being making one phone call to hire a cleaning company I already know about, no need to even find one, they don’t realize how small my town is, they don’t realize how fucking competent I am at everything, how I have been my entire life, etc etc the whole thing, where were they when my father was brutalizing my mother for 20 years? fuck them fuck them fuck them plays in my head for weeks. I am unfailingly polite I am never in a rage.). I politely send another email asking for their credit card numbers. They tell me they are worried about the credit card numbers being stolen. I tell them I process several hundred thousand dollars of credit card charges every year and have not yet been accused of credit card fraud.

Harriet tells me she’s sending a check. Judy lives off a trust fund and tells me she doesn’t have the cash, wishes she did. Harriet’s sister, the one with the huge bank account, never responds.

I hire the cleaning company. As I write this on April 10th, no one has yet to contribute a dollar. I’m too proud to ask anyone else for money, my friends would give it in a heartbeat, but what’s the use of that. I tell my brother he will split it with me. “It” being: me paying to have his house cleaned. He has yet to give me any money. I am bitter.

March 10.

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Is there anything springtime can’t fix? Cancer? We’ll see. Except for the cleaners debacle, my heart feels warmer with the warm temperatures. I’m so thankful not to have to worry so much about her falling on ice, the cold affecting her so much, her ability to be outside so curtailed. She can take walks. She has to hold onto the car, a pole, anything nearby every once in a while, especially right when getting up or out of the car, until her breath comes back. The breathlessness is a constant presence. Can you even imagine. But still. Less ice is something.

Maresa and Jacob and my brother and my mom and I go out for dumplings. Even with the breathlessness and all the rest, it feels normal. It feels like how I hoped her moving to town would feel—freed from the pressure of her quarterly visits, we could have normal, daily life interactions. I’d been looking forward to this for years. The visits were hard—so much contact, so compressed. Today feels right, both of us working at our jobs then meeting up at night for a treat.

In the car we learn that she’s done LSD twice and mushrooms “oh, a bunch I guess.” We talk about that Michael Pollan article about LSD for cancer patients. She’s unimpressed. Her trips weren’t something she wants to repeat.

I’ve been thinking about LSD, for myself. The article makes it sound really amazing. I want to be happier, desperately. I want to remove the barriers around my heart I’ve put up that separate myself from happiness. I’ve meditated three days in a row. I’m working on it.

March 11.

In the car (how many times have I written “in the car” in these diaries? I have never been in a car so much my entire life. Sometimes I think I am in love with my car, my cozy little world, hugging me here and there.) on the way to chemo we guess what her weight will be. I have a feeling she’s gained a little. She comes out of the weighing room and high fives me—103!!! Four pound gain from last time. Everyone’s smiling at us in our glee. Amazing.

Her ankles are swollen, she’s tired all the time, breathless whenever she puts her body into a new position, a million more bodily concerns and annoyances. Nothing major, but it adds up. I ask the doctor if she could get on a 3-week chemo schedule, to give her some more good days in-between infusions. She says she was going to suggest the same thing (confirming to me once again that I basically am an oncologist specializing in pancreatic cancer). She suggests no chemo today, and instead a blood transfusion in two days to help her energy and anemia. Blood transfusion! It sounds ominous.

She’s happy on the way home. It’s 53 degrees outside. No chemo feels like cutting school on the first nice day of the year. She’s been craving fries, and we go and get them. She needs a bookshelf and an ottoman, and we go and get them. I am problem solving like fucking nuts. We discover that she calls an ottoman a hassock, a word I’ve never heard before. The elderly man ringing us up at Target says “what a nice hassock this is,” and we’re going crazy, asking him if he grew up in Chicago (“I grew up in Hackensack New Jersey, ma’am, and everyone I knew would call this a hassock”).

She tells me random things on the way back up: that Maya would have gotten into Harvard, except that they had a quota for Jews. Somehow he found out years later. It devastated him at the time. What snobs they were, those kids. Harriet and Maya and Pauline. I hate feeling so hard toward Harriet. On the other hand: what is her fucking problem with sending me $5 a goddamn week.

I keep pointing out all the snow melting, how excited I am for snowdrops and trout lilies and the violets that grow on the hillside next to my house that we candy for Tablets and ramps and morels and she says “I’ve never met anyone who looks more forward to spring than you.”

I go to work and do paperwork for a few hours. We jump-rope for the first time all year. I head home early, 6:30, before the sun has even set, just for the rare pleasure of seeing my house at dusk.

SPRING.

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March 13.

We leave before dawn for the blood transfusion. I expect her to be feeling good, no chemo this week, but when I get to her apartment she’s weak, sitting on the couch catching her breath. Once she gets going she’s OK but it takes a lot to get going in the morning. My brother’s bike is blocking her gloves, and she gets that helpless anger she has sometimes now—“This bike! I’m going to smash it with a hammer!” Then she reaches the gloves, and it passes.

She doesn’t have Yearwood rage, it’s always strange to see her angry.

On the drive down with the ridiculously beautiful sunrise bathing the car we talk about animal rights vs. animal welfare, how we’re animal rights people but recognize that welfarists are needed, that it’s a spectrum. “Do you know that guy, Gary Francione? I’m Facebook friends with him. Oh, he hates Meatless Mondays. Hates them! I get the point, but still—maybe it helps people to eat a little less meat? Let people do it! Why hate on it!” We always have things to talk about.

The blood transfusion is in the same building as her chemo, but a different wing. For some reason the nurses here find us very charming. They tell my mother how tough she is for not using the numbing cream on her port before needles go into it (“I’ve never even opened it!”), coo over how skinny she is (which I hate and which is incredibly damaging to her weird pseudo-anorexia), how young she looks, how I brought her so many snacks and treats. They ask her if I’m in school and she tells them I’m 37 and own a chocolate shop, and they bring over all the other nurses to guess my age and talk about chocolate. One of them has a son who goes to SUNY New Paltz and she knows the shop, tells everyone how pretty it is, and then all day they’re bringing us treats, comfier chairs and juices and treats they’ve squirreled away.

The weight thing, the age thing—the mainstream world! What if I was transgender? What if I didn’t present so femmy? The special treats, the cooing and telling my mother what a great daughter she has—probably gone? How precarious one’s privileged position is.

The weight thing, dear reader, is such a complex and strange thing. She’s…how can I talk about it? A little proud of her ridiculous weight. She knows she needs to weigh more, knows she’s scary-thin, but she’s of the generation for whom thinness is all (though she’s only 1 generation removed from holocaust survivors, was born in 1941 and so is really the same generation. What gives? Patriarchy trumps even the post-war pleasant plumpness provided by prosperity [sorry for that].). She’s constantly telling me in a weirdly proud tone couched in concern “I weigh as much as those supermodels! How does anyone ever find them attractive? Skin and bones, yuck!” Then she’ll tell a nurse, as she did the other day, that she’s decided she wants a pair of stiletto heels for this summer, when she gets “less wobbly.” I ask her why on earth she’d want heels and she says, “Well, why not! For fun! I mean, I weigh as much as those supermodels, anyway!”

Oh, oh, oh, second-wave feminism. What hath you wrought. Sizeism you did not exactly tackle.

But who cares. Today I’m just so in love with her. When the nurses tell her I look so young because I have good genes, she says “I have two secrets—a vegan diet and hair dye.” They all laugh. The one who’s son goes to SUNY NP tells me, “New Paltz. What a great town! So beautiful. I love that town. So many quirky shops. Like yours!” We’re only an hour away, and Sleepy Hollow is beautiful too, but in a Westchestery way. New Paltz is country. On the Planning Board, we’re facing some major development, and it’s nice to be reminded that the image of my town in the region is so bucolic.

They show us the bag of blood. “You’ll feel a lot more peppy after this, let’s hope!” Let’s hope. I ask if it’s mixed blood, or if it’s all from one person. From one person! I wonder who. I hope they were kind.

They give her a Benedryl and she falls asleep. She wakes up at one point and looks straight at me.

“I have non-vegan blood in me now.”

I tell her it’s OK.

I look at her and she’s so small.

My tough mom. I want to cry. She falls back to sleep.

Later, she’s watching baby elephant videos on Facebook and tagging me in them, and then I watch them. Baby Elephant Doesn’t Want To Cross The Road.

“I bet that’s her mom and her aunt. Elephants are matriarchal, you know?”

March 16.

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The weather gets shitty again, 20 or 30 degrees below average every day. Being the asshole that I am, I would never self-identify as a person with SAD because it just sounds stupid, but it’s obvious cold affects me out of all proportion.  It’s in the low forties the whole week, which isn’t bad, but I’m so mad it’s not in the mid-fifties that it’s as bad as January in my head.

She’s feeling great, practically normal. Minimal shortness of breath, walking well, good energy. But she’s irritated. Life is irritating, I’d be irritated, you’d be irritated. I can’t afford to be irritated. I think about how angry and irked I would be as a patient. I’d be a fucking nightmare. As a caretaker I can afford to be calm.

Chemo. The doctor decides she needs some radiology tests on her swollen ankles. The swollen ankles are a source of concern to my mother. She’s terrified they portend more swelling, is having nightmares about her whole body swelling. Reader: be clear. She hates the swelling because having a thin body is everything to her. But also: it’s painful. Her legs are so heavy she has to lift them up stairs.

Needing to do a new test confuses and irritates her—the extra time, the walk to a different department. No one thinks she could have serious blood clots, but you need to check anyway. The hospital is labrynthiane, but walking to a different wing seems almost overwhelmingly confusing, she keeps asking me where we’re going, if we’re lost. “I’m not nervous about getting lost, but only because you’re here.”

We’re waiting in three different waiting rooms for hours. Sometimes that’s just how it goes.

One TV in one waiting room is showing The View and

{{{insert here standard rant by a person like me about daytime TV whipping the middle class middle aged women in the audience into a frenzy about how much they love Michelle Obama // preservation of the one party corporatized hegemony at all costs—include lines like: Everyone in the waiting room is rapt and so am I I mean how could you not be, high fructose corn syrup is a helluva drug.}}}

I miss our private waiting room with the little curtain where I can squish the chairs together and read with my shoes off.

When we finally get settled she starts in about her ankles.

“Oh, I’m just so irritated about it. I so pride myself on my thin ankles.”

“But…why? It’s not something you have control over.”

“It’s just…nice. Don’t you feel bad for people with fat ankles? I mean, how horrible.”

I’m the closest I’ve ever been to angry at her to her face in the past four months.

“No, I don’t feel bad for people with fat ankles. I’m a feminist.”

“It’s my generation, I know that. I just like my thin ankles. I’m a feminist too! Of course. But still.”

I don’t know why I’m so angry. Who fucking cares about politics. She just wants her body back. I have to open my heart more. I’m tired, haven’t eaten anything.

She can tell I’m irritated, is clinging to me, apologizing, doing that thing she does where she looks to me for approval before telling the doctor or nurses anything. The chemo nurse asks if she can get her anything, and she looks at me. “Ah….” “Mom, do you need anything? Water?” “Oh, water. Water would be great!” This attitude confuses me. Why doesn’t she know what she wants without consulting me?

I’d be a good mother. I know this. But I’d hate every minute of it. That’s something, right? Knowing this about yourself.

We’re gone for 11 hours, and when I get back to work I walk into Jacob and Maresa hatching springtime plans and I crumple into a ball they have to remold into a person-like shape in order to continue with the day.

And they do.

And I do.

My mom texts me later: “Well I guess I’m just like Keith Richards now.” “Why?” “He was always having blood transfusions between tours so he could do more drugs!”

March 25. 

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Kate and I go see Perfume Genius at BSP. I’ve already seen him once, last fall in San Francisco, so I know that I want to get there early to see everything, and I am rewarded. “Probably you in the back think I’m wearing pants,” he says. “You’re wrong.” He’s wearing some sort of very fashionable t-shirt and fishnets and we stand completely transfixed and it fixes both of us in important ways. Jenny Hval opens and I can’t even get into how weird and wonderful she was, songs full of screams and gendered and ungendered and engendered weirdness and things with bananas and people wearing wigs sitting on stage staring at you as she sang.

Maybe cool people go to see art to relax but I am an extremely uptight person and what I want from art is to feel the exquisite pressure of the universe compressing every atom in my body. Tonight did the trick, I renewed vows to the avant-garde, went to bed content for the first time in ages.

March 31.

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My mom texts me:

It is not nice to make fun of people but .. H last night asked me how to chop an apple. Detailed instructions.

She said she can’t peel an apple. I said do you have a peeler? She said, I did have one once.

me: this is greatly amusing to everyone at the shop.

mom: There is more. She said after you peel it do you cut it lengthwise or crosswise? Do you core it? I was kinda speechless.

 IMG_1734(bird list of my grandfather’s.)

Next: Cruelest, Part One. 

7 Responses to “AND THEN IT WAS SPRING”

  1. Randal Putnam

    Sweet, sweet sunshine. With more sunshine and a tailwind I may rejoin the living. Sounds like you’re already there. Good on you.

    Reply
  2. elizabeth

    i love perfumed genius.
    navigating cancerland while being… different… is strange. my partner is trans, and i’m heavily tattooed and pretty butch looking. my partner gets misgendered a lot, but the tattoos mean all the nurses remember who i am. mostly, they are all excellent, despite this. but that could just be australia.

    when i was in hospital after surgery, there was an endless flow of tattooed 30-somethings coming in and out of my corner of the ward. it was nice.

    Reply
  3. Veggies and Meows

    I just spent what seemed like hours (in a good way) reading your blog from part one of the cancer diaries. I adore your work as a chocolatier, I have mad respect and empathy for your veganism, your feminism, and your anarchism. I love the Gary Francione discussion you and your mom had. My boyfriend and I have that same discussion a lot. And I think you might just enjoy a good LSD trip, assuming you are in a positive state of mind when you dose. Just remember, you can always pull yourself out of a negative thinking blackhole when tripping, as long as you know you can. I hope that makes sense. Now I’m just rambling. Just wanted you to know I’m here. I’m reading. And I feel for you. And for your mom. You’re one strong woman and I hope one day to be half as kick-ass as you. Wishing you all the best. PS I love your sketchily-vegan sugar birthday tradition.

    Reply
  4. lagusta

    Oh wow! Thanks so much for reading all those zillion words. And for your heartfelt thoughts and tips. It means a lot.

    Reply

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